Random Jottings Of Gildersleeve

Smoothie Two...

2012-01-28T16:37:00.003Z

Thought I'd make a smoothie for Mum last evening and no matter how I reassembled the Smoothie Machine I was using and made certain all parts were tightly in place...the liquid(in this case milk)kept leaking out around where the tap attaches to the machine and I ended up losing probably a pint of milk.

It is probably something I have not done correctly but in the end I thought..."I'll move onto my new food processor" but if you only want to use the smoothie facility that's a bit of a pain.

Today, I found one that does all I want...it had £2 knocked off the price too.

It is in the range of the Argos store's own brand and I have not been disappointed with previous items that I have purchased(a microwave and juice extractor)so I suspect this will be ok too.

It's nice to be back in business.

Calories...

2012-01-27T12:26:00.001Z

I'm not obsessed with how many calories we eat...If hungry...we eat, if not, we don't bother.

But with Mum's condition and the booklet sent by the dietitian, I am trying and hoping I can keep Mum's weight constant for as long as possible so she has something to fight with and keep her strength up. And it appears to maintain her weight they say 2,000 calories should be taken in daily and any extra will hopefully add extra weight.

Its been ages since I looked at the back of the carton containing Complan to read the information and for ages I have been saying to Mum..."Every time you have a Complan that's 250 calories!" Yes, if made with water but Mum's having whole milk and its actually nearer 385 calories per drink so if she has four in a day she's almost reached 2,000 target. Then if you work on the approx calorific value of coffee made with whole milk, sugar and brandy each of those is approx 200 calories.

And we haven't even got around to what a meal is worth or food stuffs like porridge, rice, yogurts, soups etc...Remarkably two crackers and a piece of cheese can come in at around 250 calories and once you get around to a meal that contains perhaps vegetables and meat(and that will fill you up)it can soon all add up.

I don't think there are so many publications on sale but years ago I remember in the newsagents there was quite a selection of books which had the calorific values of every day foods to help people work out their calorie intake(usually to try and reduce it)and lose weight whereas we are trying to maintain/increase Mum's weight.

So Ignorant...

2012-01-26T19:23:00.005Z

I can half understand why a Social Worker may wish to avoid talking to clients out of hours and not in their official capacity(perhaps its written in their conditions of contract)but you cannot really avoid saying at least "Hello" if your paths cross. You can acknowledge each other. Its doubtful anyone else would guess you are a Social Worker or a client unless you've had to use the service and to anyone else who she talks to it could be a friend for all they know.

Not long before Christmas I was sat in the town centre resting my tired legs and she walked past me, head down and avoided eye contact, ignoring me.

Today walking around the local supermarket she had to pass me and we were so close its a wonder our shoulders did not brush against each other and she still tried all she could not to speak but I made her say at least "Hello!"

And then for the rest of the time she was in the store if she saw I was in a particular aisle she did all she could to switch directions so she would not have to speak or have any contact.

Believe me I have no desire to talk to her but it is a worry and annoying that she has, in theory, so much power that she can make decisions that could affect us both so much.

She has such an opinion of herself which can be seen by the way she carries herself.

And to think she is visiting us again on Tuesday...the same day of the week that the District Nurse seems to favour. Supposedly a day no one does and therefore is restful. I can think of better things to do.

Update:Mum had a great day in every way and I can report as I write this added paragraph in the early hours of the next day, she has been having a lovely restful, peaceful sleep through the night.

Good News All Round?

2012-01-26T14:09:00.004Z

At last I can report that my blood tests are fine! And the consultant has arranged an appointement for April but he is happy to have me send my results in and him let me know how things are.

He's been very kind about that.

"That" meeting that I am not supposed to know about had been pencilled in for 2pm tomorrow afternoon but just as quick as it was arranged...it was cancelled...something had come up and the Social Worker was not available.

It appears that just possibly the District Nurse/Social Worker have hinted that things "Got out of hand" and things were said that should not have been... that's an understatement. And who's fault was that? Lets hope that's the line that they continue to take.

Its not very often these kind of people back down and admit that they were wrong.

The big problem is that they have been less than honest and they did not talk direct to those concerned. They were playing one off against the other. And everything was being found out almost by accident.

What A Faff On!

2012-01-25T16:44:00.002Z

Today I suddenly thought I have not heard anything regarding my blood tests and wondered if I should assume because the hospital where my Consultant is based has not got back to me all is well.

From an earlier post you'll know my Dr's surgery had raised concerns about something not being right and told me to contact them after sending a letter out.

The Consultant's secretary asked me to ask our surgery to fax them or talk direct to her/the consultant, she gave me her direct line and the fax number.

I phoned the surgery at 9.30am and was promised that they would send the information to the consultant.

I contacted the hospital today and was told they'd never been sent/arrived...no wonder I was still waiting.

So I rang the surgery again today(a few minutes ago)to be told "We don't send faxes out!" So I'd still be waiting. I asked for the number the Consultant should phone(Fax or direct line)They won't divulge them. So the Consultant's Secretary has had to contact them using the same number I use and sit and listen to the music and messages to eventually reach a person to get the results.

Why is one place in the NHS so helpful and the other so awkward?

If they are worried about the general public having numbers(its interesting to see that the hospital isn't)but wouldn't it be so much simple if they had faxed the information over to the hospital, especially as someone said that they would. And if they don't do that, how about coming back to me and telling me that they don't so I am not waiting and waiting.

Well, Here We Go Again...

2012-01-25T13:10:00.007Z

Had a long chat with MacMillan Nurses charity about our ongoing situation...Was advised things looked strange and what is going on looks questionable so was advised to consider asking what they are unhappy about and why we are getting so many visits. Was told that I could possibly consider getting in touch with the local council and to consider going down the Advocacy Route and/or put in for an Freedom Of Information Request.

I am awaiting a phone call from the Carer's Association for advice too.

Now, everything happened at once.

Someone arrived to discuss/arrange me becoming appointee for Mum's financial affairs regarding anything to do with the Government.

The carer arrived to give Mum a bath.

And then the District Nurse and a Dr.

It got so busy the carer couldn't give Mum her bath(We'll still have to pay for the time she was here)Then again she stayed and listened to what was said to Mum and heard the discussion between the Nurse and Doctor so she was another witness.

Because the carer, Dr and nurse were here it messed up the visit for me to become appointee which was not completed.

I wanted to be present and hear what the Dr said to Mum and vice versa.

Mum was not as good as she has been put with 5-6 people all wanting different things from her, it was a bit confusing. As soon as they all went she was more "With it!" and even answering or remembering things she got a little wrong earlier and she got them right. Asking what day it is isn't a good question if you don't read a newspaper or listen to the news and are indoors a lot. Many of us forget what day it is.

The Dr asked what street Mum lives in and she couldn't remember but when I asked a few minutes ago...she did. In many ways I can see an improvement in Mum, she does not repeat or ask the same questions as much as she did some months ago and I can often second guess when Mum will be a little more confused "She calls it being in a muddle!" And today she had not been awake long.

She would've been better on a one to one chat and how and what was asked.

The Dr said it was good as it could be in the circumstances and it is an ongoing thing, the carer thought he was reasonably positive and we should be happier by his attitude.

"That" Dr is leaving(I don't know how to take that)whether he was always temporary or things did not work out for him. The carer has had clients of hers who he saw and he wasn't popular with them. So we'll never know the reason I guess but we won't be seeing him again.

Today, being put into a hospital was not even mentioned.

Really, the Nurse brought Dr's in about the few marks on Mum's face(mentioned in an earlier post)they were still there nearly 4 months ago so why start now to go on about them. They are slow growing and they won't kill her so today the Dr said "Why stress Mum unnecessarily" but its good to know that they can be done if they need to be or Mum wants to have them done.

Our carer disagreed with something said by the District Nurse and voiced her concern which the District Nurse disliked. But at least she managed to voice her opinion about what's been going on and the Nurse even her intentions are good was knocked back a little.

And yes, "That" meeting is taking place and the Carer has been asked to attend and the meeting is between her and the Social Worker but we still cannot find out what its about and whether I should be concerned. Or where its to take place.

The carer thinks that the Nurse set things away and then probably regretted doing so and could not stop things racing away. Who knows.

Update:To avoid future problems the carers association have suggested to let anyone in(especially Dr's)and show co-operation(so they've changed their tune and advice)so I'll not be contacting them unless I have no choice in the future. Why can people who advice not show consistency?

To avoid the possibility of that Safeguard injunction being instigated they said(We only reacted as we did to that Dr)and the one Nurse and for almost three months things were going along quite well. If Mum can continue to show that she knows what is happening, she has the right to say she wants to stay here and not be taken into care(hospital or care home)and as long as we can show she getting the best of care Mum should always be here.

Going into hospital for an operation etc...is a different matter.

Oh and of course the Social Worker is calling again on Tuesday next week and now it seems unnecessary unless she has something to tell us?

This Is Just Sinister...

2012-01-24T18:30:00.003Z

The impression given by the Social Worker(She came out to see us)is that if we are not careful "A Safety Guard" may be issued and Mum could be taken away.

She brought someone else with her who kept me busy and she talked with Mum(and then they swapped places)

I have no reason to disbelieve Mum but some of what they say Mum had said she is sure she did not. But Mum says that a lot of questions they asked were about me and how I was coping and she gave a good report about me.

But Mum said all the right things and dare I say praised me and my care and explained how happy she is to remain here.

I understand "If" Mum says it herself she cannot be "Forced" to go where this Dr seems to want to send her. I understand(I don't know if this so)that she can sign herself out of hospital and ask to come home.

Now again, I am not told the absolute truth as the Social Worker left she said she thought that a Dr would call tomorrow(They are determined, I'll say that)How did she know that unless someone has been in touch with her? And guess what when I asked who the Dr would be...its the same one! I hate being lied to.

This now means that Mum has had to talk with the Social Worker for three hours, I think that is over the top and takes quite a bit out of her.

Friends, relatives and even charities cannot understand what is going on...and why we cannot be left alone, we're doing ok!

Mum is going on fine considering what is wrong. And even the District Nurse said as much today. That's why it seems so un-necessary.

They're Like A Dog With A Bone...

2012-01-24T14:48:00.002Z

Mum's eating reasonably well and drinking well. Sleep at night could be better but she does sleep restfully a lot of the time so does get "Proper Sleep!" She's warm and content. The confusion is not too bad either.

You'll know that we had a visit from the Social Worker last week and a different District Nurse both gave a glowing report on how well Mum is doing. And we are now back to alternative days with the carer etc...

So the District Nurse we have had problems with returned from a weeks holiday today and we expected she have a chat with Mum and look at the tumour and leave.
I was greeted once again with the Nurse telling me "That" Dr was coming to see Mum again(coincidence?)

Of course not!

It is also strange that some of the other nurses we used to see on a regular baises have dropped out of the picture and we only ever seem to get this one nurse visiting anymore. The other nurses never seemed to have any problems with Mum and the care that receives.

I refused to see him and Mum had said(without any prompting from me)that she did not want to see him.

More was said(Not worth going into)but we got the "We're health professionals" routine again and she started to bad mouth the Social Worker to some extent so I am hoping to talk with the Social Worker about this after 3pm if I can manage to catch her on the phone(She said that she was going to act as a buffer between us and the Dr but the Nurse was basically saying that she couldn't)

I am also talking to the local Carers Association tomorrow who are supposed to watch out for people like us and our concerns.

Its upsetting Mum and myself un-necessarily.

Update:The Social Worker came out(and brought someone with her)did that trick of keeping me talking to the other person whilst she talked to Mum but Mum said all the right things and they had to admit Mum was quite well mentally.

But the Social Worker is back tracking on things she said a week ago(could you call that telling half truths?)and as she left she suggested a Dr will probably call tomorrow and it will be the same Dr...

Why not be honest and say that she knew a Dr was calling again tomorrow and it would be him. Its already been arranged. We really seem to have little or no say in what is being decided for us. I found out from Mum that many of the questions being asked were about me. Its all so underhanded, no wonder I am the way I am. I don't trust anybody now.

Well I hope Everything Is Going To Be OK...

2012-01-23T11:18:00.003Z

I contacted the Consultant's secretary at the hospital and the results of my bloods had never been sent over to them.

So she gave me the Fax number so the results can be transferred from the Dr's surgery. Considering my condition the last few blood tests were confirmed as to being very good. And according to a quick word she had with the Consultant he expects this test will be similar.

Still my own Dr's surgery refer me to seeing a Dr(well my family Dr is away until the end of January and I'd rather see him)The letter is sent out on behalf of a Dr at the surgery so the only way I can find out what is wrong is to arrange an appointment with a Dr.

In the meantime, even though I still cannot find out anything at my surgery until 2pm the person on the phone said that she'd send the results over to the secretary but she let slip my previous bloods and these aren't that bad.

So probably/hopefully my Consultant is right when he thinks all
will be well this time.

The surprise that caused the alarm bells to ring at my surgery is a raised ESR level. What? I didn't know what that was and have never heard of it.

A quick search on the Internet informs me that it is short for Erythrocyte Sedimentation Rate(That's the activity of inflammation in my body)

Now, that does not seem to concern my Consultant and might be expected because of having a condition affecting my kidneys. So hopefully its just a case of my surgery being cautious but on my case but its maybe been spotted by a Dr not familiar with me.

The ESR is found out by leaving a container of blood and seeing how quickly they fall to the bottom...if its fast its not good, if its slower that's better and it can change from day to day so a one off test is not really a good way of deciding what is happening.

So I await a call but I am more positive as to what I am going to hear.

The Consultant's Secretary was so helpful and approachable I suspect the delay is because the Consultant was out of the office and she'll have to catch him or our surgery has been slow in sending the results to him.

Perhaps I'll hear tomorrow.

Typical...

2012-01-21T10:08:00.005Z

Just as things seem to be going our way...

I have had a letter from the Dr's surgery telling me to contact them regarding the blood tests I had done last week regarding my kidney condition so as I cannot contact anyone until Monday afternoon(They say they have a message for me)I'll be worried all weekend. I'm not sure that worried is the right word, more concerned and I am reasonably calm.

And then wondering what I am going to be told when I do manage to get in touch as if it is serious it could affect how Mum is looked after especially if I need more care myself...

Ask me how I feel as I make the phone call or hear what they want to tell me. I had the tests on Monday, they had the results on Wednesday(when the letter was written)and the letter arrived today. Dare I hope the fact they waited four days to contact me and I cannot contact anywhere until Monday, its not as serious as we think? That's almost six days.

If I had to go into hospital temporaily or for regular treatment, they'd probably want to take Mum into care...they would not let her stay here alone and I am the primary carer. Annoyingly, the last few tests have been very stable and good. So I hope the message is a good one but they don't usually contact me so I am cautious.

Nowhere that can help is open over the weekend. I think I'll contact the main department of the hospital my Consultant is based on Monday as they may have the results earlier and can tell me what the situation is a few hours sooner.

Result!!!

2012-01-20T08:23:00.005Z

Probably what we expected and unlike our good news regarding Mum and how we were being dealt with by the authorities this was what we probably expected and not so good.

Many have tried to soften the new proposals on welfare for the sick, vulnerable and disadvantaged or ask for a delay to see that what is wrong with them can be changed before they become law. Of course the campaign failed and any success was short lived.

A lot of that is because the media ignored the story or took the line from the Government instead of saying here are two views...you decide as a viewer or listener.

One of those who tried to get another opinion out there is Sue Marsh(with others working "Behind the Scenes")

It has taken its toll and I think its worth reposting the latest blog entry from Sue's own site.

So How Am I?

Statistics which the Government loves to keep putting out are so skewed...

An example today in the news is a report saying that 375,000 migrants are claiming from the UK's welfare state but there is not much being said as to whether they are from the European Market so they have a right to claim as we would if lived and worked in other European countries. They are not saying how many have become British Citizens and have been contributing to the UK's economy and so on. The headlines in the news is that 375,000 are making a claim.

A bit of research shows that only 2% are not entitled to benefit help but the fact that amount is so small has hardly been picked up on(I think that's around 5,000)and though that is not acceptable no one has said but we've also because of our safeguards and investigation stopped those 5,000 from getting anything.

And the same kind of treatment happens when the media/government talks about the sick ane disadvantaged. The media speak is so skewed.

I am not saying how I feel about this contentious topic just showing how what we hear cannot not always be taken at face value...

There is a great programme(I think some programmes are available as a podcast on the BBC Radio 4 website)called More Or Less they really are worth a listen...just to see how our every day lives are affected by numbers...

And at present if you have access to the BBC World Service they are carrying a series of this programme too...please give it a listen.

They are all available at the link I have posted...

Result!!!

2012-01-18T12:54:00.004Z

The best that we could hope for in the circumstances...there is in the background a worry that Dr's and Social Workers can force someone into care virtually at the click of their fingers(it can be done very quickly)and it appears that those affected have little or no chance of redress but...thankfully(Please God)we are not in that category and hopefully we will find ourselves being treated fairly. To me its another way of using the law and seems similar to where someone with mental problems are sanctioned.

Well, I'm not sure we did but whatever we said worked! Perhaps we had right on our side and also I was able to point out the short comings in their system.

For now we are back to almost where we were when all this started.

1 A carer calling alternative days(not every day)

2 A carer calling later at time than present, probably 11am instead of 9.30am/10am

3 Three days Mum will have a bath(the fourth day will be a blanket bath)

4 The Social Worker will call more regularly and doing so will replace the Dr who we had to deal with and I understand she'll report to him how Mum is but I will still refuse to deal with him and cancel his visits if he tries to call. It is my right and I want to deal with "Our" family Dr or others Mum and myself are comfortable with.

So they have some of the changes they wanted but I think that we have the better deal.

The Social Worker was definitely pleased with how she saw Mum today. I am happier with this result. Why did we have to go through all that we have and fight to get to this point?

The Social Worker thinks we should be getting those supplements to help build Mum up too and says we may have success if/when I approach our own Dr. I want that other Dr out of the picture.

Another Day And Ready For A Possible Fight?

2012-01-18T10:21:00.003Z

We never see hide nor hair of the Social Worker most of the time and there are times when I have approached her/her department in an open manner asking for help or suggesting ideas and you hear nothing! She has a lot of power though and she has decided to grace us with a visit.

Mum has decided to give her a bit of a surprise...when she walks into our lounge Mum will be sitting in her chair not in the bedroom. And hopefully Mum will have a bit to say about what she wants regarding the care she is or is not receiving.

Yesterday, I got the impression rightly or wrongly that just maybe there could finally be some give on behalf of the authorities who are supposedly meant to helping "Us" rather than adding to our stress.

Lets see if we feel that way after she's been.

On a positive side the carer today said she thinks that Mum is gaining weight and that has to be a good thing...

What Do You Do If You Feel That You Are Being Harrassed By A Dr?

2012-01-17T12:59:00.005Z

To cut the story short the District Nurse that we have had problems with brought a Dr with her last week to see Mum.

We'd had reasonably positive news from the specialists that are treating Mum(considering where we find ourselves)and if Mum only has a little time remaining(and we have not been told everything)but opinion suggests if that was so, specialists are pretty blunt and wouldn't hide bad news but Mum is happy, content, warm, eating and drinking and in many ways has improved. The fact Mum is being called back for a consulatation in two months time and may be offered further treatment and they say the problem should remain localised and will be controlled, is good by our standards.

Mum was offered a very mild bottle of medicine that has morphine in it, if needed should her own painkillers not work...I thank him for that but so far Mum has not needed it.

The Dr wants to put Mum into a cottage hospital(he says temporarily but neither Mum or myself wants her to go)I have not influenced her decision.

He suggested Mum was dehydrated when he called(Funny that the hospital last week did not suggest that)and the latest bloods were fine, she drinks loads in a twenty four hour period and the simple test of pinching the skin and seeing how quickly it returns to its orginal place shows that she is not lacking in moisture, Mum is putting on weight again and her motions are normal etc...if you are lacking in moisture they are affected. On the day he called Mum's temperature and blood pressure was perfect and the day before whilst at hospital we heard the results of mum's last three blood tests and they were very good.

I understood today that the DM would call as usual and do the usual quick check of Mum's tumour and disappear, I had no idea he was going to call as well at the same time. He'll claim its for Mum's good but he's stressing Mum out especially and if we need any help I'd rather see our own family Dr when he returns at the start of the next month. He knows us. This Dr does not! Once you lose trust in someone, it takes a lot to gain it again. This Dr never will.

Why?

2012-01-17T01:29:00.003Z

I'm talking years...but when we used to have a cup of coffee after our evening meal(sometimes cheese and biscuits too)but we always made it with boiled milk so it was always lovely and creamy.

Now, the leaflet issued by the dietitian on how to maintain/build up weight mentioned milky coffee and I suddenly thought...when was the last time I made coffee that way.

For too long I've made it with water and added milk afterwards. Amazingly, Mum said a few minutes ago "I fancy a coffee!" Its been quite some time since Mum asked for one and I have made it with boiled milk and its lovely. We never made it strong anyhow but the extra milk will add to Mum's calorie intake.

Funny how sometimes very simple ideas are the best and you need a reminder once in a while.

Dr I'm In Trouble...

2012-01-16T13:21:00.010Z

We think/hope that the Dr we could not get away with could be a temporary addition to our Dr's surgery as another Dr is away until February.

I had to laugh, the nurse who took my bloods today for my consultant regarding my kidney problems brought up that I had not had a blood pressure reading for ages and the the drug I take means I should have one taken every six month at the surgery. The first time anyone has said that in 14 years(and I always have a reading taken by my consultant every three months so its in my medical records anyhow)

As I walked out my home to have my tests...a letter arrived addressed to Mum from the hospital Mum stayed in approx 14 days ago and remember the bother I have had to get a dietitian especially as to getting those supplements etc...to build up her calorie intake...this letter says Mum was due to see one before they let her out and back home!

Now, what did that Dr say about Mum not getting the best medical care that she could?

Or me for that matter...anyhow the dietitian says we can arrange an appointment/have a chat but they've enclosed a booklet with advice about diet etc...so I'll see what it says and what I think.

Everything in the supermarket is all about losing weight and many items are Low Fat but today I found some yogurts that are high in calories and a nice range of flavours.

One pot has the same calorie value as some meals and one cup of Complan(somewhere around 250 calories per pot)

So we should be able to build Mum's calorie intake still further...

Update:Had a look through the little booklet the dietitian sent and though only 14 pages long it has a lot of good ideas(and to be honest...I'm doing most them already)but the only thing I had not thought of to add extra calories to a meal is to add milk powder and I guess that is a bit like adding those granules I had heard about(and were going to be very expensive)

I can say that I am already doing all that I should be...

It would appear that we are back to being seen alternative days by the carer service(by error probably)but the truth is no one knows what's going on...Friday we were not meant to be seen by anyone and someone turned up. Sunday no one turned up but we were awake in case they did(we'd rather have not been)Tomorrow, again they say no one will be calling(But you never know)What a mix up!

But as this mix up has reduced some of the calls, we're keeping quiet...Don't get me wrong, its probably good that a nurse and a carer keee an eye onMum as they may spot something that I may miss but it shows at this minute we can and do manage well, not having someone every day.

And I can say hand on heart I have been proven right regarding all the things I have said on my blog about all that has happened and how we've been treated and that goes for the criticism I was getting on a forum where I thought I'd get support and I decided to pack up and avoid un-necessary hassle. It was only a couple of people but I didn't need it.

Looking after Mum sometimes I forget about me so I've just had tomato, cheese, ham and marmite in a wholemeal bun(I had two)And Mum's had the first of the yogurts(Strawberry with Channel Island Whole Milk)and enjoyed it! I think that I'll be buying more...

Later Mum had a ham and cheese omelet(and having looked on the internet)that offered approx 300-500 calories. It doesn't take much to increase or maintain energy intake.

I'm Glad That I Have My Gadgets And Most Are Being Used...

2012-01-15T16:03:00.006Z

As opposed to being stuck at the back of a cupboard in the kitchen.

I have returned to making my own smoothies today. It was ok(and easy)

I'm still using a machine that I had convinced myself needing replacing(I certainly believe its been discontinued)but I have a full processing system I can move onto when it gives up the ghost.

I thought I'd attempt to get some fruit into Mum's diet and as a drink its easier so I threw a decent handful of blueberries, two bananas and three or four big strawberries into the mix with some whole milk and came out fine...

Hope I keep the interest and will continue to use them and do as much for my own health and benefit when I am alone...assuming I can afford nice food(and don't find myself unable to buy certain items due to the cost)

I think we'll finish today with some chicken and mushroom soup and then a piece of baked fish and probably ice cream.

I suggested Mum might like to go downstairs and watch some TV(a change of scenery)but to be honest there isn't much of interest so we're going to doze whilst listening to the radio...its a favourite night for music on Radio 2 which become really "Easy" listening in the true sense of the word.

7pm Michael Parkinson playing favourite music of his.
8pm a documentary about Tony Hatch.
9pm Russell Davies
10pm Clare Teal
11pm David Jacobs(Yes, he's still broadcasting as he reaches his 87th year)and why shoudn't he?

They produced a two part tribute on David and his broadcasting career not to long ago and soon Brian Matthew is having a tribute programme too but he's only 85(I think)and he's only been given one programme.

And you get such a range of music of the last 50+ years amongst those programmes but its not "Chart" music its the standards with the great artists that are not heard as much on the radio anymore...For anyone outside of the UK that's BBC Radio 2(Its available on the BBC I-player live)or upto 7 days after transmission...

What an exciting life I lead...

I Mentioned About Whether The Time Is Right...

2012-01-15T14:57:00.003Z

To start a new political party with all the recent "Fun" regarding changes to welfare and the cuts being brought in. And the fact the House Lords had put a spanner in the works which I am afraid will really only offer a delay to what will happen in the next few months and years. And that many are asking who offers an alternative manifesto as the main parties are all similar.

I got into a little discussion with my fellow blogger and friend Span Ows about this and to some extent I can understand his view when it appears that "Many" take the safety net for granted and abuse it and was not what the welfare system was meant to offer. To the sick, vulnerable and disadvantaged but in reality those working the system are fewer than the media and politicians would have us believe.

But as always money can be found to try and brown nose other countries or for those projects that a particular Government favours.

And more than ever in these difficult times even those who work have no guarantees for the future as what their retirement will be like or whether you'll have a job one week to the next. So even those who think that they are safe need to think again.

Well this is quite an interesting piece even if it is more like an editorial and some will see as biased...

Nowhere To Turn For The Vulnerable

Complan...

2012-01-15T10:51:00.003Z

Takes some beating...I've been going on about getting extra calories into Mum. Well every time she has a Complan with whole milk she's getting 250 calories and often Mum has at least four in a day so there's 1000 calories before you think of any solid meal. And Complan is less expensive than those supplements/drinks I have been looking at. Macmillan Nurses charity seemed to think Complan is good. In fact looking at some foods in the cupboard that is higher than most foodstuffs, most cans of soup only come in around the 100 calorie region and many every day foods are similar. This increases on things like creamed Rice Pudding made with whole milk.

I didn't used to bother much with counting calories and most of the time commen sense works but perhaps I will take another look...not because I want to resuce intake but increase it. I noticed the Lancashire Hotpot we had the other night was around 525 calories so having shared it I guess we managed around 260 each.

On another topic...

They've made us have a carer daily as you know...

The stand in who called on Friday was nice enough but to be honest she had hadn't been informed what was expected of her, officially if she had done what was expected it was bath day(Mum had already had one the previous night)and Mum didn't want to be chewed on so she left(Put down that she'd been with us 20 minutes)It was more like 8 minutes. We'll pay for that. But to be air it was not her fault that she had been sent and was unprepared. I suspect if we had told her what to do she probably could've done something.

They say Mum is thin and her weight is down, this your girl looked as though she could do with a bit of building up herself. And far as we know this your girl isn't ill.

We've been up since 8.30am this morning...no one has called...so we've wasted two hours...in the meantime I have changed/cleaned Mum(I have it down to fine art...I think it took 3 minutes)I've made Mum a Complan too. Officially its not a bath day, Mum had a blanket bath and was creamed yesterday so if anyone had called, I doubt there is anything anyone could do today so it would have been a wasted visit and not needed.

So our morning has had an un-necessary interruption.

What a horrible day outside too, its dull and freezing cold...most of the night it was misty with that icy kind of mist in the air. Its nearly 11am and it hasn't thawed and so if it gets to maybe 2pm-3pm it will start to get cold again. Its nice if you don't have to go out in it.

But its my tests tomorrow morning so I hope they come out OK. My own consultant has been kind enough to allow me to have the tests done at the local Dr's surgery(well, I used to do that any how)and have the information for him when I saw him at the hospital a few days later but now they call the surgery and get the results.
He's been very kind with the situation we find ourselves in...

If all is well, I will be left alone until the next appointment comes around but things are not good they can call me in at short notice.

Hopefully all will be fine.

Is Now The Time To Launch A New Political Party?

2012-01-14T18:41:00.003Z

I don't really know if it could work...the intentions may be well meant but when you get into power you often find your hands are tied and many of the ideas you wish to introduce will not be possible or it will take longer than planned and your electorate will become disillusioned or impatient. Equally, some of the things you hate and want to change will prove very difficult to reverse.

Some new parties have been launched over the years and most fail or they have to join an existing political party to survive.

A lot of disadvantaged, vulnerable, disabled etc...are asking which party will offer them the best option to feel safe and secure and none of the main parties are offering any real alternative or a safety net.

Its been suggested that these very people should try and become a force. If you were going to try to do something about what's happening I guess this is the time to try it. Especially, as after the poorest in society have been kicked in the teeth, the middle class are now about to find they are getting squeezed so they may too find they have something in common with those at the bottom of the pile.

Maybe they could work together...the same is true that the Unions that have always supported Labour feel they too are being treated badly by a party that should at least offer an alternative manifesto to the other parties. There seems to be nowhere to go.

The House Of Lords has been criticised for years as being for the privileged but it is the best buffer we have to put the brakes on what the House Of Commons does especially at a time when laws can be passed on sheer numbers and you have no chance of any compromise.

And just as some MP's dislike what the Lords stand for, is it any better when the Lord's is now often populated by people are gifted the position of being in Lords by the political parties in the Commons and because of that they are probably going to go along with the policies of the party that awarded them their position.

And after the recent defeat regarding some of the changes the Government wants to introduce to the welfare system they have proved themselves to be remarkably on the ball and understanding about what the changes will mean to those most likely to be neglected by society.

The problem is that not enough was done to scupper the proposed changes and they'll probably be re-introduced and become law. Its mainly a delay and nothing more.

They say there is no money but money can always be found for projects that are dear to any Government who is in power and even a Baroness has said that its wrong that those at the bottom of the pile who had nothing to do with what's happened economically are being targeted first and as they are.

I would have said this whether I became ill or remained healthy and I still believe that as a basic element of a successful and compassionate society. Heaven forbid we go back to the idea of the Workhouse where people are hidden away from view.

Mum's Worth It...

2012-01-14T15:48:00.004Z

No wonder the pharmacist said get the energy drinks and granuals to build up Mum's calorie intake via the Dr and on prescription as many do...

I asked if I could buy Polycal Granuals and Maxijul drinks privately in a local pharmacy when I was out today. I have to buy a certain amount...

30 bottles of Maxijul(200ml per bottle)works out at £73.98

24 boxes of Polycal(400g each)works out at £158.11

I still may...because at this minute I am able and that won't always be the case.

But I have come back with so much fruit and vegetables to make juices and smoothies and ideas for meals after my shop today I may very well succeed using my own ideas.

There Might Be A Good Reason For It...

2012-01-13T20:55:00.004Z

I can't think of one unless I was around at the wrong time or not long enough.

However, thinking of how the Dr raised the possiblity of Mum being dehydrated the other day, I remember when Mum was in one hospital for nine weeks the came around every two or three hours(certainly morning, afternoon, evening)with fresh jugs of water at every patient's bed.

During Mum's recent stay at the other hospital run by the same trust...at the various times I was present I never saw any jugs of water near any bed or any removed or brought to a patient.

Knowing how important it is to have enough fluid, that can't be good can it?

Had A Long Chat With The Macmillan Nurses...

2012-01-13T12:32:00.004Z

They think the care I am giving Mum is superb and they say Mum will be at her best in her own familiar surroundings.

They think we are being hounded un-necessarily. And they could see the points I have been making regarding the care that we are getting or has been forced upon us so good to see an independent organisation giving unbiased view. Actually saying that, sometimes those who think they know best can get it wrong.

But there are more positives than negatives regarding Mum's health and her care.
And here's the important bit...I am feeding Mum all the right foods and drinks and doing all the right things to try keep Mum's weight reasonable and keep her strength up. And can probably do so without buying the range of expensive products manufactured specifically for the purpose.

They didn't think that they could suggest anything more to what I am already doing.

Interestingly enough though they felt that we should have been referred to a dietitian or could ask to be so again when the Dr called yesterday and said he thought they were not offering the care that they should...there is a simple idea that they all seem to have missed.

When I took ill with my kidney problems 14 years ago a dietitian visited me on the ward whilst I was in hospital. The District Nurse, Social Worker, Dr etc...all seemed to have missed this as a possible idea.

I'm not a health professional and yet unless you are talking about administering drugs or doing operations etc...I really believe it is mainly down to common sense and I am doing as much as those who are being called in to supposedly help us.

Well, Complan was thought to be very good and I am off to make another for Mum now, soon I will be giving her a bowl of porridge. All said to be very good.

So do I feel that I have to justify my care for Mum and have the Dr yesterday tell me that I am very defensive? He said the social care was ok, well I see Mum's comfort, well being and what I give her to drink and eat as medical care. So I don't think that's bad either and I take notice more of the specialists at the hospital to what the GP thinks.

But again, if it was any other Dr at the surgery we are regestered I might be more responsive but this one I dislike his manner, he was arrogant and you could not talk to him. He did not have that bedside manner.

Now Today...

2012-01-13T10:30:00.003Z

I've discussed with a few people what happened yesterday and they feel we are being hassled but cannot understand why and another had a similar situation.

He says we did right to stand our ground and as long as "We" say we want to stay here, they can do nothing.

Unfortunately, it has got to Mum and stressed her a little as today she said to me "I think that Dr will get his way!"

Not if I can help it and Mum should not be having to deal with that worry...

Those suppliments I was telling you about are very expensive no wonder people try to get them on prescription...would be nice to be given the chance.

Though the charity Macmillan Nurses seems to have an idea how to make some of your own nutritional drinks etc...

Ideas to Make Your Own Nutritional Drinks

They'll Say That They are Watching Out For Mum...

2012-01-12T13:47:00.014Z

But I see it as adding to Mum's stress...

The District Nurse arrived with a Dr from our GP surgery who we have never seen before...I'm sorry we did not like him...I'd love to say much more but I am afraid what I say might be misunderstood and I'd go down in your estimation...

It always seems to happen when this particular Nurse is on duty(the same one who caused the previous problems)I do wonder how much he had been primed by her instead of making his own unbiased opinion. Regardless of what he said and whether I agree with him I disliked his attitude and general demeanor.

He wanted to take Mum away and make her stay in what he called a Cottage Hospital and be assessed.

He felt that she could be given better medical care than she has at present. Really? Why has it taken them so long to come to that conclusion? I wonder if she'd ever get back home. I know of the hospital he was talking of. So does our carer and many who go in there seem to never come home.

Mum does not want to go. I don't want her to go either and I feel at this minute in time all that Mum needs is being done for her. She eats when she wants and I see that she gets the best of everything. She drinks regularly(He tried to suggest that Mum was dehydrated)

The carer earlier today had said how smooth and soft Mum's skin is and if you do that test where you pinch the skin and let go, it jumps back immediately.

She had a few Complans, fruit juices and soup already today.

They kept saying I can visit whenever I wish(where they are talking about sending her)is miles away and getting there by taxi is difficult and the expense could cost me £40-£50 a day.

She is content and as happy as anyone can be in the situation we find ourselves.

Mum's bloods are stable, her temperature perfect. There are no infections. She is relatively pain free too. She's much brighter and was having what I see as a good day until they showed up. She has continued that way ever since.

The worrying line I thought was ominous as he left here was that he said "We know what stage your Mum's disease is at" Is it worse than they are telling us?

Yesterday, I was told it can be controlled and it unlikely to spread and will stay local to the area it is located.

Again, I felt that I had to defend my care as it was being suggested there is something not quite right that I look after Mum(Why that is different to a male nurse with a female patient)A mother looking after a son, a partner looking after a wife etc...I don't know...Someone said the other day how is it different to a daughter caring for their Father?

Again, I'd just changed Mum perhaps two minutes before they arrived. He managed to spot one mark on a sheet and questioned it. You would not believe how small that mark was...I made it clear that if he had been here five minutes later that would have been taken care of but also made it clear that every sheet and blanket has been washed, all clothes are clean and washed...there is not one thing in this house that has not been washed and isn't clean. That mark was removed within 10 seconds with disinfectant(I said it was a sheet...it was actually a matress protector)

And I made it clear that she is better cared for here than when she was in hospital last week.

And basically said don't start criticising my care.

Whether Mum has weeks, months ahead Mum wants to stay where she is and I want that for her too.

If I require medical care for a problem of my own I have I have talked about putting Mum into residential care for a week or so until I can come home again and look after her. And when I mentioned that the District Nurse that is an option so why is it so important to get her into this Community Hospital?

Mum told them "I want to stay where I am and I am happy and content!" And they had to admit if Mum wants to stay here they have to follow her wishes...

Mum was quite sleepy when they called so did not say as much as she might've but she did say she wanted to be here.

And after they'd gone she said coherently that she had heard all that I said and she was proud of me and how I had stood up to them and that I was right in everything that I had said and she thought they were trying to be clever and treat me like a child.

Of course they are supposedly experts but it felt as though they know best and follow a set criteria.

I will do all I can to avoid him calling here again...I hope he doesn't just land on us without announcement, if I need a Dr I won't be asking for him.

It just seems one thing after another...

And another thing, Mum uses her bedroom as a bedsit so she can listen to music, look out of the window and watch the world go by, have meals...all she needs is upstairs...toilet, bathroom and so on.

Mum does go downstairs especially if there is a reason to if there is maybe a tv programme she wants to see. She sat in her chair downstairs in the lounge after being at hospital yesterday.

The District Nurse goes on about her being in her bed(and then other times says there's nothing wrong with that)she seems to keep changing her mind. Today after saying they want Mum to go downstairs, the same person said, well she's just sitting still in her chair.

Not sure what she expects anyone to do in your home...What do any of us do? Watch TV, read a book, use a PC, listen to a radio etc...especially if you are older and frail.

Some things that many seem to be prescribed to make them stronger I keep being told would be good for Mum and local pharmacists say we should be able to get them through our Dr but my requests seem to be ignored...I'd like Mum's calorie intake increased and there are nutritional drinks and powders that can be sprinkled on food but no one seems ready to let me have them so I may have to buy them privately. They are not cheap but Mum is worth it! So if they want to prove that they intend to offer Mum better medical care here's their chance. Don't hold your breath.

We're Home...

2012-01-11T21:41:00.002Z

We didn't see the Oncologist but a Dr who works in the Radio Therapy Department but she was reasonably positive about Mum's tumour(even though it has grown)and suggested that it will always stay a local problem and yes they are calling her in again for a check in two months. They did seem to suggest that she can have a course of RT again.

So that sounds as though they are not expecting Mum to leave us anytime soon.

They even suggested that they could do some localised marks on her face(not life threatening with RT)so they wouldn't offer to do them if they though Mum's time was limited. So maybe we have again more positives than negatives and she said again had the original tumour been seen sooner they probably could've made it even smaller but all in all not the bad day we feared.

Its funny how suddenly "Some" are interested in the marks on Mum's face...now. Why were the Dr's that treated her for years at the Dr's surgery not dealing with these?

When Mum was in hospital for nine weeks after a hip operation not doing something about it or referring her to someone else? Likewise another time she had in hospital.

Our problem is that if they stress Mum too much it may accelerate the dementia but even that isn't too bad for now...

A GP is calling tomorrow(Follow up to Mum's stay in hospital last week)but the District Nurse has invited herself along and I think its because she's raised the subject of these marks(again)little do they know the person we saw today at hospital has explained to Mum what they are and said they can be treated if Mum so wishes, I suspect Mum will leave well alone...One will improve be quite sore for a while and she'll have to wear a kind of contact lens to protect her eye whilst it is treated. Not sure Mum could get away with having a contact lens put in...the other is near a tear duct.

So when they visit tomorrow we've already talked about them and possible treatment.

Mum has also said she will probably not be considering changing her medication regarding pain as what she takes do still work a lot of the time. Changing to stronger pain relief may be something that will happen later. We'll have to see.

The carer returns tomorrow but you know we've really enjoyed having no carers here. Its been no more harder looking after Mum possibly easier...and as the District Nurse still calls she is able to check how Mum is and how the tumour/general health is. So Mum is not being neglected.

Mum's just eaten a decent portion of Shepherd's Pie...is having ice cream soon and a fruit juice. That's good enough for me.

Today's The Day!

2012-01-11T09:13:00.002Z

In less than two hours Mum sees the Oncologist...

So worried about that and what he'll say...

And in the House of Lords they vote onthe first ammendments of how many will be affected by changes to welfare...

Time Limiting Of ESA

Difficult times ahead...

Tried Out The Juicer...

2012-01-10T20:23:00.002Z

Mixed feelings...A cabbage had to remain in wedges rather than fed in as leaves otherwise it was treated as pulp and no juice was produced. I tried to wash it first as best as I could leaving it intact...

It didn't make as much juice as I hoped...Four carrots seemed to make only a small amount as did two sticks of celery but when poured out I guess that had made approx five glasses of juice. So perhaps more than it looked.

I suppose it came out at approx £1 for the amount that I made. As there is only a little celery and carrot included in the recipe, I don't think its fair to add that into the full price cost. It possibly added approx 30p.

Would another juicer be better? Possibly...but at that price...

The pulp was quite wet, if drier perhaps more juice could be extracted but its not been bad.

It wasn't that noisy.

Cleaning the juicer was ok.

I'm not sorry that I purchased it...

Palliative Care...

2012-01-10T13:54:00.000Z

I suppose it does what it says on the can and I have to accept that I will lose Mum but its more when rather than if. Back handed positives from the District Nurse today in that I asked how Mum was in general and though her weight mass is slight(she said she sees people with less body mass than Mum)but not to expect that I can really put weight on Mum by feeding her well and that as the cancer takes hold her weight will reduce still further.

Again, Dementia wise she sees people much worse than Mum who are still in their own home(with some extra care)and Mum is pleasantly content, happy and hasn't a difficult attitude so I should just "Plod on!" as I am doing.

Not to worry too much if she doesn't eat too much and to let Mum eat more or less what she would like and when she'd like. To carry on with the Complan's, rice puddings, custard, porridge and so on. Plenty of drink to stop dehydration.

She did a little more than usual and actually gave Mum a blanket bath...

The tumour has started bleeding slightly and whereas I thought it was larger, she tended to say it looks different but still looks reasonably good. Of course we can only see the side of the tumour that is visible not what is happening on the other side. We'll see what the Oncologist says tomorrow.

The District Nurse is coming again on Thursday or Friday with a GP from Mum's surgery just to give her a once over and to see if Mum needs to change her pain medication for something better.

Not sure if things are much the same or I have more to worry about.

In Amongst My Own Troubles...

2012-01-09T13:33:00.007Z

But it is connected regarding the vulnerable, sick and disadvantaged of society, we have changes happening to the help the State gives so it needs as much publicity as possible.

So here are more links to two important things happening the next few days with regards policies that will be discussed and probably carried through on numbers in Parliament.

Boris Says

The system would be under great strain if people had to keep contacting to report every single change in their medical conditions if it changes so much. I'm also happy that he highlights how small the amount is that actually commit fraud...we are always led to believe it is such a large figure. Also for them to know that figure must mean that those committing fraud are being caught.

The Doctors Say

Even the medical profession is unsure that the proposed changes are well thought out.
The Campaign/Report

I so hope this campaign has an effect but I fear it will fail because the main parties all sing from the same hymn sheet on many policies but again, because of the make up of the present Parliament many are carried on numbers alone.

Time to step forward on the Spartacus report

Other Public Figures Have Their Say...

Christine Hamilton

Stephen Fry

Val Mcdermid and Kate Long

The Spartacus Report – the easy read version

Not Watching The Clock...

2012-01-08T16:32:00.007Z

As all carers do, even the most caring are restricted by time. Most companies do not allow them time to get from one place to another even if its across town. So you are playing catch up all the time and few companies these days give anything towards the mileage.

Well, earlier this afternoon whilst Mum relaxed and listened to one of her favourite music programmes on the radio I gave her a blanket bath, it was not rushed and I suspect unlike the carer I removed any soap that remained(I used two sponges, one for the wash and one for the rinse)and two dishes of water. Then creamed Mum's skin to keep it soft. It did not take that long and Mum said it was better than what our carer does. And that's not being critical of the carer. I'm not sure that the soap gets removed normally.

Update:Mum has just said that her body feels the best it has ever felt after a blanket bath and every part of her feels lovely I can ask for no better compliment than that. Having the carer in, I've tended to accept that task has been done so to use the phrase all those in charge tell me. Let the carers in and let them do what they are there for and you enjoy the extra time you get to yourself.

Well, I don't really get any extra time as I have to get things ready for their visit and more and more I'd say my care supersedes anything we get so far. I accept in time that will change. I guess someone calling regular will spot such a time but isn't that why the District Nurse calls? The Social Worker would be known more by her absence but you know what, I prefer it that way.

Another thing, they worry about keeping Mum clean and about infections, well if Mum's care is so poor, how come no infections were found after they did all the tests on Mum at the hospital?

Remember the talk about dirty finger nails...Mum said herself sometimes if you scratch yourself and have cream on your body you get residue in your nails as you could if you scratch your head. Even our carer said that(so have other Nurses who work for the service)Why do they think the worst? BTW Mum's hands are lovely and clean and well cared for.

The Social Worker would probably find an excuse to complain and those in charge including the District Nurse that caused the recent upset too. I wonder if they would any good at actually doing the work that the carer and myself do?

Because I Feel So Strong About The Following...

2012-01-08T13:13:00.008Z

And more than a little scared of the future...

This blog enry links to another blog I have on the left hand side of my own but this a specific post that is very, very important...

If you are fair minded and live especially in the UK perhaps you may like to bring it to the attention of others via your own websites and blogs...

Thank You!

First They Ignore You...

Time Limit On ESA

Many disabled or disadvantaged just get on with it but when they keep making it harder for people to manage it is understable why people are worried and scared.

I'm glad that at last it is in print just how low the rate of fraud is, as I may have said elsewhere we have a TV programme that shows what fiddlers of the system get up to but they always show the worst cases and never say "these are exceptional cases we are highlighting" or "The fact we can show these cases shows how on the ball the authorities are at cracking down on fiddlers!" They leave the general viewing public to believe this is normal and everyone is at it! And that its easy to get these benefits. I hate that programme.

Mind you can never account for the Human race, someone who claimed to be ill phoned into a radio programme to say she thought our present Government is doing all that it can to make the lives of the disabled better, I doubt that very few feel that way and I might ask what planet she's on...

To some extent I'd actually include many in our society that work and those who find themselves unemployed not just the sick and vulnerable. I have said before that whilst a minimum wage is welcome...too many employers see that as an excuse to keep wages low.

The minimum wage may be ok if a few in a household are bringing it in or if you are starting out in work after you leave education and hopefully you live with your parents and they don't take too much off you towards your board and keep, you may just about survive but its not a living wage.

And many jobs have the household having to claim tax credits from the Government to still survive so people in work are still caught up in the benefits system. So you have to question the wages many are earning. Even before the downturn in the economy many companies were "Shafting" their employees. It happens whilst you work and more than ever your works pension scheme is scaled back so you are just as poor when you retire.

We even have a big international company Unilever, in dispute with its worker's about the final pension scheme and a series of rolling strikes are to be held at factories across the UK by workers starting in a few days time. The only problem is that such a company may decide its easier to relocate and though the workers probably feel their case is justified and this strike is probably a last resort decision, the risk will always be that jobs will be lost.

As We End Today...

2012-01-07T01:14:00.003Z

Its been a good one...

Mum has been calm and rested. She's happy and content. She's slept, she's listened to her music. Mum has been easy to look after. And everything that should be done has been.

I have not arranged the resuming of carers coming in after Mum's hospital visit. I'll have to and I'll probably aim for Monday but it has been less stressful not having them here. And I say again, all that Mum needs care wise has been done. A break like this can be a good thing even if temporary.

She has drank regularly(Complan, tea, water and fruit juice)I managed to get some meals into her(smaller portions but...)Chicken and Broccoli Pie(that's a bit like Shepherd's Pie)Home made soup with lots of fresh vegetables whizzed up so its easier for Mum to eat.

I don't care when we eat, just that we do. No doubt they'd say its good to have set times for meals.

I Have A Juicer...

2012-01-06T21:54:00.006Z

Not sure if the choice is the best I could've picked but I thought if you are not going to use it as often as you might, spending a lot may mean its a waste of money. It only cost £30(I see at some time in the past it had been on special offer at half price which I missed)

Anyhow, the reviews aren't that bad...

Juicer Reviews

Mine is more in a silver/grey colour.

And one person says more or less what I have said above. If I use it a lot and think the benefits are really good I can always consider a different model in the future.

I'll let you know what I think when I use it for the first time...

You Can't Teach Caring And Compassion

2012-01-06T13:29:00.006Z

Of course even the most caring person will have lapses and perhaps if you do a job day in day out(as has been said in the past that if you see horrific scenes on the news or photo's in the newspapers you might be desensitised)but...
Probably because everyone has to has to work there are always going to be some "Wrong Uns" that get into any profession but I don't think anyone can argue that you cannot teach someone to have compassion and to genuinely care for your fellow Human.

I have spent at least eleven weeks watching the care Mum has received at two hospitals and...when I was involved in hospital radio going onto wards for approx fifteen years. I have seen both sides.

Some it is the fault of the nurse/Dr/consultant, some it is the way they have to follow procedures or are simply rushed off their feet being pulled in all directions.

In general though the biggest problem is...attitude and that some simply don't want to be there, the patient is getting in the way.

This last visit the nurses were efficient, friendly and quick to do whatever they were asked.

Where they fell down was again something that is often mentioned.

Food was brought in at mealtimes and they said they wanted Mum to eat something before they let her home.

Mum might've eaten more and fed herself if she was in a chair or able to sit up close enough to reach it but even with the table lowered and the bed raised as high as it was...the angles were all wrong and I suspect had I not been there she would have given up.

At least I was able to feed her and get some soup into her and a little mashed potato and minced lamb with gravy. The meal itself was fine, I had no problems with the quality/quantity.

They sometimes like relatives out of wards when its meal times but in many cases I think that could be a time they should be allowed to be there because if a patient has difficulties eating food, the relative can feed the patient and take the pressure off staff who may be busy doing other things.

Our Prime Minister is according to what I heard on the radio making cuts in the NHS and we could see 48,000 nurses being let go. Perhaps there are too many. Yet in the next breath it is said that he has proposals to improve the care nurses give to patients and that includes at least a nurse checking on a patient every hour. That I would think is a minimum requirement anyhow.

Perhaps if the 48,000 were retained, patients could be seen more than once an hour, that does not necessarily mean you have to bother a patient but you could be observing and if suddenly something goes wrong, you could be on it quicker and that may save a life.

One nurse seemed to be on the ball all the time that I was watching and whenever I asked for anything to be done it was done very quickly and with no protest.

Ideally people instigating such changes should be thrown in at the deep end and have to do the job themselves and experience it at the coal face. That would be good for the Prime Minister. Get your hands dirty and also see the emotions staff have to deal with facing both patients and relatives often having to give bad news. But that isn't going to happen.

Even without the fact it just won't happen, he couldn't go under cover, he's too well known, so any situation would be artificial and there would always be loads of helpers running around or security keeping people at a safe distance which the staff don't have the luxury of.

But again, whilst I am sure some care given to loved ones at home is below par, unless Mum was in need of a piece of equipment only available at a hospital, drugs not available to the general public or an operation...my care is just as good as what she had in hospital and dare I say probably better. As once again it is on a one to one basis.

Speaking of caring some are just that way...the taxi firm that we use, all the drivers go out of their way(and you can tell its not done because for business purposes)they want to help even if its nothing to do with needing a taxi.

Last night one driver had passed by a lady driver broken down on a roundabout and he couldn't do anything at the time but he went back specially as soon as he was able and did what he could to get her car going again. He had some jump leads. He managed to get her on her way so at least so she reached home safely. There are still nice people around(possibly fewer but thankfully some exist)

I saw a similar incident last year when the snow was at its worst(I am not fit to help)but a lady driver got stuck on a side road and spent ages digging around the tyres but could she free herself?

Many cars went by but eventually two cars did stop and had her away in seconds...that isn't taught, its within you.

Whatever Caused Mum's Blip...

2012-01-06T09:56:00.004Z

and resulted in her being in hospital...

Her general health must be pretty damn good.

All the vital signs blood pressure, bloods and the fact there were no infections prove that if it wasn't for the two acute conditions she has developed she is pretty fit and healthy so it is a pity these two things had to happen.

It also proves that my care must be pretty good as if they were concerned about hygiene and infections and she did not have any when tested in hospital, I am doing all the right things.

As The Previous Day Ends...

2012-01-06T00:52:00.005Z

Mum is sleeping soundly, little sign so far that I can expect a restless night.

She's eaten and drank.

Some of the memories have returned and she seems content and calm.

I managaged to get the weekly shop in and have some new ideas that hopefully may tempt Mum to eat her meals and hopefully build up her strength, one was prompted by the hospital as I found she was able to eat it quite easily...Shepherd's Pie. So I have some lean minced lamb, some maris piper mashed potato to go over the top of it, I may add a small amount of vegetable(even if I chop it up finely)and a little gravy.
Or tinned tomatoes instead.

Still looking at the fruit juice extractors...Amazon have sent an e-mail with so extra ideas to consider..

I think its time to turn in...Goodnight!

A New Day...

2012-01-05T10:15:00.004Z

I wan't going to go to bed but I did and slept reasonably well.

I didn't bother to tidy the house that can be done later.

A couple of quick tasks to do...A shave...get Mum's bits and pieces together and I'll be away and it could be a long day.

Been told Mum is ok but she had a restless night so has been moved to side ward(bit vocal)so I assume would keep other patients awake. This may go against her early return home. I don't know. I was told it was nothing to worry about but my knowledge of patients moved to side wards suggests otherwise. I hope that I am wrong this time.

So see you later!

Update:Just got Mum home...there is confusion but she's much as before(and seemingly all tests came back fine)so we cannot blame an infection for the sudden change. Hopefully its temporary and she'll settle down again and an incident such as yesterday is a one off.

I assume a new appointment will be made for Mum to see the Oncologist for the cancelled appointment. I'll leave it this week and maybe get in touch and see if another can be arranged.

Mum's first request on getting home...she wants a complan.

A Day I Am Glad To See The Back Of...

2012-01-04T22:58:00.001Z

Well, You never know how things will work out...

This has been one of the worst days I have ever had.

There I was just after 8am I had overslept and was rushing to get Mum to see her Cancer Specialist...

Guess what we never made it!

I went to make Mum a Complan and when I returned I could not get any real response from her. All she wanted to do was sleep. Well, of course after some time I really became worried and thought Mum was having a stroke.

So we spent 5-6 hours in A&E in a different hospital with various tests being carried out and once again even that did not go smoothly(they forgot about her)and her x-rays were delayed by 2 hours.

The only good thing is that she became coherent more or less as soon as she was on the ambulance. And it would not appear that she had a stroke.

If the observation goes ok and the further tests that are planned too just maybe she will be allowed home tomorrow. She is confused but not about important things and most of the time she is still quite bright. It also depends when you catch her 99% of the time she knew she was in hospital but when a Dr asked where she was she did not know but she knew she wasn't at home.

But again they asked her as she had just woke up, never a good time to ask questions.

Most of the time she manages fine...

So we'll just have to play it by ear...they are going to test of UTI infections and other things like bloods etc...This is one time I hope they find she has something making things worse because if all is well, then there may be more serious reasons...for what happened.

So we'll see what tomorrow brings...

Another Busy And Possibly Difficult Week Ahead...

2012-01-02T09:21:00.005Z

The carers return today in approx 10 minutes(I say carers)in reality at present its the same one...

Tomorrow we have to jump through hoops and prove we should be getting extra financial help...all the forms were filled in months ago and those involved said we should get it and all was sorted, seemingly some loose ends need tidying up. So some official is calling.

Wednesday its the appointment with the Consultant regarding Mums cancer...Still doing well but I am afraid that the tumour is growing again...It now has white spots on it but a nurse who is quite up in such matters suggests that I ask if there is a fungal infection on the tumour bed causing inflammation and swelling which might make it look as though its growing again.

Also, a fungal infection could cause a change in behaviour, appetite, increased confusion as the digestive tract is affected and bowel changes...and of course Mum may need a blood test(I think they'll do that automatically)and it may show changes in her blood counts that could require a blood transfusion(as happened at the start of this journey)and if anaemic that too can cause confusion...as can a water infection in the elderly.

Now, if this is the case perhaps things may improve again with treatment and care, if so perhaps and I hope that we will not have too much to worry over again. But you await possible dreaded words your Oncologist may utter.

Update:Tuesday 2012 01 03:Not a good day, Hope Mum is better for seeing the Oncologist tomorrow and I can get her to the hospital by Taxi. Had the weekly visit from the District Nurse(first time for this one)she's normally in the office so has not much information on Mum. So whereas the others who call can compare from one visit to the next this one had nothing to compare it too. Overall she thought it looked intact and not too bad, cleaned the area and applied cream but...

When she left I had to do it again as I noticed that because of how she went about the task the bedding and the new pants were already soiled as they were put on. So again, I found myself doing the work others are supposed to be doing to save me some work. Now don't get the impression I am constantly doing this...we can often go for quite sometime and really though things may become worse, we are managing very well all things considering.

Oh I hope we are not going to hear some really bad news tomorrow and that he is happy with how things are and that he may consider further treatment when it is safe to do so. I hope that he doesn't say we will leave things as they are and Mum is living on borrowed time. We are but as things stand we have not been given a time frame.

Update:The visitor who is calling about helping us is not calling today and for at least the 5th time they have the dates wrong and we have gone back to a date we were given a few weeks ago and had I not called the office I'd still be waiting. I would be wondering if they would come when Mum is at hospital, we're back on for Friday...

What a horrible day weatherise, its windy we have squally showers and though it usually gets dark in the early afternoon it is really dark.

There has been damage reported in the media and some deaths around the UK but in my street so far my wheelie bin was blown over even though weighted down with lots of rubbish inside and a fence was blown down over the road but some hours later when I looked out it was erected again but as the person is out at work I have no idea who repaired it and when.

A New Year Begins...

2012-01-01T14:34:00.006Z

It will probably change but at this time my Mum is very loving(which was always her nature)and likes lots of cuddles and the holding of hands so we are enjoying that bond we have. And I also realise that many are not fortunate to have such a close relationship.

If she falls asleep she likes to know that I am there and it gives Mum comfort.

I don't believe she understands that she has mind problems but admits to being frightened(its awful when you cannot make things better)It also doesn't help when at times she says "I don't want to die yet!"

I have read of people having reasonable lives for years with the right care and understanding.

I won't say that its not going to hurt but as I know Mum is not in control of changes her brain will go through I think I will be able to accept the day when she does not recognise me or know who I am.

And I hope that I will not dwell on it and think of our happier times together. This assumes again that she will be here for sometime to come and we may never reach that point.

With understanding and care we may still have some good times to share. But I am jumping the gun and so much of this is unknown.

In some ways its good to get help from reputable organisations and the internet/pc has been so important but its sad that most of my time on line is now spent looking up and finding out information about something so sad.

I hope that the confusion of late and how quickly it seems to have become worse may be tied in with the cancer and people have suggested some possiblities which sound familiar to when all this began approx 3 months ago and just as the cancer is supposed to be a slow one, I hope this type of dementia is slow too.

I Should Have Had A Look Out...

2011-12-31T15:07:00.002Z

But I cannot be bothered. I want to be around Mum. The weather is horrible and I don't feel as positive or bright as usual.

Being New Year's Eve chances are most shops will be closed tomorrow so I really should be getting some bread, milk and some chicken or something.

But I think I can manage with what I have in the food store until next week.

I have lots of soup, fruit, fruit juice, eggs, milk, bread, spaghetti, baked beans, ham, fish, potatoes, salad stuff, cereals, porridge etc...so I should be able to make something out that lot to tide us over and Mum isn't eating as much as she was.

I hope I can persuade Mum to watch some TV tonight but its difficult when the programmes don't interest her much. But a change of scenery has to be good.

Worrying Times...

2011-12-30T12:40:00.009Z

Not what I want to see as we enter the New Year and our appointment with the consultant.

Mum's tumour has been quite consistent and remained intact...the carer and nurse have been very positive about how the lump has reduced. However, yesterday the nurse said that the skin around the area is healthy and all is good but the carer mentioned a slight change in appearance(some white spots on it)

As we are not having carers in over the new year period I was dealing with Mum a bit more closely today and yes, though still small and they say any change would take some time to show and it wouldn't happen overnight I think it has started growing again and yes I can see the white spots they are on about.

I don't know if the change is big enough to mean we should be over concerned. I said earlier our consultant mentioned if it came back within three months they may not give further treatment, six months they probably would.

Well, I suppose it must be at least six weeks since the Radio therapy treatment was completed so possibly if it does grow this slowly maybe he might consider another round somewhere down the line...its still much better than it was though I have to concede.

But of course we'll have to see if he wants Mum to have another scan, a blood test in case she is anaemic and needs another blood transfusion. Of course none of the above may happen.

And of course I am watching over Mum's memory problems too. Sadly, it may be more than short term memory loss, then again many illnesses have symptoms that are similar so I hope that I am wrong. We'll just have to take it one day at a time.

I have advice which may mean the confusion could(Please God)be for other reasons so we'll see how that goes. It could be for all the reasons I've already given and yes those so called innocent white spots that I mentioned may have something to do with it remarkable as it seems.

Of course I have kept Mum's remaining living brothers informed how things are but all they seem to say is Mum should be in a home! The easy option. Things will have to be really bad before I'll ever consider that option and its not on my radar. Another relative on my Father's side who I have made contact has said look after Mum as long as you can and you'll know that you have done your best by her.

His Father had dementia and was looked after until a spell in hospital but before he could be placed in a home he passed away. However a home was only considered because his mother was also quite aged and it was too much for her to care for him. I have age on my side for now. They keep saying I am still a "Young man!" Sadly time is catching up on me and unless they keep increasing the age that you retire from work, I'll soon be collecting my pension soon enough assuming my own health does not deteriorate further.

I was talking to a neighbour I have never met before and so many people are struggling and looking after their own "because its what you do" and not all are getting help...this person is in his 80's, going blind and looking after his wife who has Parkinson's Disease and he says he'll look after as long as he's able and she says she wants him to do so because she trusts him. How many are playing out similar scenario's?

The Nurse That Called Today...

2011-12-29T15:25:00.003Z

Said she did not know anything that had happened in recent weeks(that could be true)but I suspect that they all are in the picture. However, this one has seen the carer at work and she also knows what I do for Mum and she is more approachable.

Again, this one has told me that I am doing a "Good job" of caring for Mum(I'm not after praise)and I must avoid being paranoid about every little mark that may mean something not as clean as it could be but no one could be kept as clean as Mum(not even on a hospital ward)but who got me this way and who upset the carer, Mum and myself?

Its thanks to this one that we were given access to some extra medical items that were costing us a fortune, this one is looking into getting us a supply of some nutritional drinks on prescription so its a change from Mum drinking Complan which though good we are purchasing and this nurse also goes out of her way to get us other items we require on prescription when we are getting low.

She is also trying to sort out a problem we have with the Social Worker about Mum's bath routine...its too early at 9.30am(three times a week)Mum is half asleep. We are trying to change it to 11am-Midday or in the afternoons but if later morning works Mum keeps the carer she knows and likes. The earlier time often means Mum is so tired/asleep or not awake enough. So it really does not do Mum any good and adds to the stress for both of us rather than helping us.

To use an old expression she is "Good Egg!"

The good news is that it appears that once again we have three days where we are being left alone and can enjoy each others company over the New Year which again proves that we are managing quite well for now...and we have some quality time.

The carer and nurse call enough to see if anything is wrong regading Mum's condition and the care she receives.

The overall opinion is that Mum's skin looks healthy and the tumour seems to be remaining quite settled and intact, hopefully all good signs for when she sees the Consultant next week.

Fruit Juice Extractor...

2011-12-29T14:24:00.004Z

It appears the best one on the market(with a two year guarantee)is made by the company Phillips but I will have to part with £100.

The big question is will I use it?

Though I believe its a good idea to have one as you can use up vegetables, fruit etc... that might normally be thrown out and you can make your own combinations of juices so have a larger variety that what is available in a supermarket. On the other hand buying individual ingredients is much more expensive so buying juices already packaged is still very appealing.

Of course you can add purchased juices or combine juices to suit your own tastes anyhow without using a juice extractor. I just want Mum to have the best of what's available to give her choice and variety and the best chance of controlling/beating the cancer, Improving her memory and make her as comfortable as possible. Well you have to try anything. If this does not prove how much I care for Mum what else can?

Drinking all this juice won't do me any harm either. Although having kidney problems I may have to watch out for water retention as much as anything so I may just have to drink less.

I am able to make smoothies and liquidise vegetables and fruit using a food processor/smoothie maker.

I have discovered two great juices which kind of make me wonder if its false economy having a juicer made by the Campbell Soup Company under the brand V8...there is a Fruit and Carrot tropical juice that contains Apple(38%)Carrot(27%)Orange(14%)Pear,Pineapple(8%)Passion Fruit(2.5%)White Grape and Banana.

The other is a vegetable juice containing Tomato(87%)Carrot, Celery, Beetroot, Parsley, Lettuce, Watercress And Spinach.

Perhaps there are others in the range but these are the only two I can find on my town.

Could I really do any better? Only in that I have some other combinations that are not on sale.

Update:I have found some great sites that show various combinations of fruit and vegetable juices that can be made up without a juicer and likewise some that need one. And it should not really work out much more expensive to make "Your Own" and you should be able to make them so you only have a glass as opposed to a full carton.

I've confused myself...I can get the juicer I was thinking of £30 cheaper online from Amazon but there is now a newer model which is double the price of the original so we're talking £200...There is also a site that sells only juicers and the like and they are supposed to make the decision easier but they've confused me further which juicer to buy but many on that site have 6-10 year warranties on the products they are selling so if I wait a few days nothing will spoil I guess.

The one I chose still seems popular but a few reviews suggest that some plastic parts break easily and it takes quite a bit of work to clean it when you are finished. I'll probably end up choosing it.

Really A Carer Is More Than A Carer...

2011-12-28T14:15:00.001Z

she/he is a spy. First and foremost they are supposedly in between a nurse and social worker.

They can be in trouble if they do not do their work properly but if they spot something they think is not "Quite Right!" Not only are they covering their own backs but they are the eyes and ears for both the medical profession and Social Services.

So often the work they do is more social.

By talking to and building up a relationship with the person they are visiting and that also includes others that live within the property and are also caring for the person they will pick up on something that does not add up.

Today, Mum wasn't being awkward but she simply was too tired to have a bath. She even dozed off whilst the carer was here. It would've been wrong to chew Mum on by dragging her along to the bathroom. So she has promised to have one tomorrow, that proves willingness.

As time is tight tomorrow, I am running the bath water before the carer arrives to save time. In theory though I am doing the work of the carer and what we are paying for. But I don't see the care Mum receives in black and white terms where I won't do something because the carer does that task or vice versa. On the other hand if Mum needs a back rub because its hurting, if that's not in the care plan...I can do it but the carer is not allowed to. So I can do more.

Mum is not avoiding having baths, some think three baths a week for Mum's age is too much and many have less than three. Mum cannot have a decent bath even with the help of a special chair that lowers her into the bath, she longs to lay out in a bath and feel the water around her. But the complication of a hip repair and to be honest we don't really like the shape of our bath its not the most comfortable anyhow. We liked the old one that was replaced when they upgraded certain rooms in the house.

I digress, just because Mum doesn't have a bath with a carer does not mean she is unclean...she gets bed baths, her nether regions are washed daily with clean soapy water/disinfectant and she has baths with me but at times that suit her better maybe 4pm, 10pm whatever. And between the carers taking a break over Christmas and returning yesterday Mum did have three baths. Its not a problem for me. Who do they think is caring for Mum when they are not here?

I have talked with Mum and she says she might feel different and have these baths with carers if they could switch perhaps to an afternoon.

But those making the decisions seems set in their ways and they don't always engage with the people they are supposed to be helping. I believe our carer may take up this with her company as even she realises that it is wrong the way Mum is being "forced" to follow the new plan which they keep saying was agreed but I know neither Mum or myself said yes...it was "forced" upon us.

Mum even warmed to an idea I had that if these baths could be moved to an afternoon that would be much better so perhaps we could reach that compromise. We'll see what happens next.

Mum's fingers/hands are cleaned often during the day either by herself or me. Most of the time that's how they are but now my carer has admitted when they call they are looking and she admits it is paranoia but she has to follow what she has been told to do. So something has been said even though I am told otherwise. Really no one could be kept any cleaner than Mum.

I Sometimes Think...

2011-12-27T09:07:00.002Z

Because you have to tidy up a little and get Mum ready upon waking, the argument that by having a paid carer brought in by a Social Worker to look after the person will save "You" the main carer some time for yourself, I actually feel until the person is really in need of care because they have gone down hill health wise, they can get in the way.

They can make a condition worse or stress out(unintentionally)the person they are meant to help. And where I can do tasks at a leisurely pace I am being rushed. And I have to put in at least an hour before the person arrives. And it doesn't take into account that perhaps during the night the person has been restless or may have needed some extra care so when morning comes around we may be tired and would like that extra rest but you look at the clock and reluctantly rise. And you do anyhow, as you are worry that you'll oversleep.

It reminds me a little of the old joke where someone hires a domestic cleaner to do their home(and actually go around cleaning the home before the cleaner arrives)so its presentable for the cleaner and you've in theory done the work you hired the cleaner to do.

Christmas Day And...

2011-12-25T13:35:00.012Z

A Happy Christmas to You and Yours...

Apologies if any of you reading here usually receive a Christmas card from Mum and myself. You must admit this year is a little different and so some things I am behind on so if you sent a card to us thank you, it is appreciated. Hopefully, you'll receive a New Year card soon...

In general the day got off to a reasonable start, Mum needed little if any extra care. Mum wants to watch the Queen's speech(we may watch the repeat later)so we can listen to our favourite Sunday afternoon music programme which a Christmas special. Mum is also looking forward to her Christmas lunch(Well, evening meal)

Update One:Most of the work I have found myself having to do today and you guess how awful this is that Mum wanted a Tomato juice and...managed to spill it all over a continental quilt, carpet and some pillow cases which managed to go through to the pillows itself. A small amount can cause so much in the way of stains. And again, when you cannot get the quilt into a washing machine you can imagine the problems its caused.

Complan can be equally troublesome to get rid of if its spilled and you can only take so many precautions to avoid accidents. That would be the same if we started to think about replacing the carpet.

The weather isn't so good outside, its not a white Christmas but its dull, white cloud, cold and there is an increase in the chilly winds...

The worse thing is my brand spanking new laptop I have discovered(I wanted it to record audio files)it can manage speech with some music fine but music on its own sounds metallic and as though its in tunnel and it kind of disappears with a strange effect I cannot describe(it has a sci-fi quality about it)so to some extent it has turned into an expensive mistake.

Who would know this would be a problem. I'm wondering if it needs a better sound card installed if that's possible(more expense and the warranty will be no longer any good)the other idea which is much less expensive but a compromise would be to join up quite a few phono audio leads and run them from downstairs all the way to my bedroom and plug them into one of my desktop PC's here.

There is always a problem unforeseen...

Update Two:Not as planned, I am still cleaning the quilt(tomato juice really is a pain if spilt(I thought that it may)but this is my first experience of it and I am washing in general. Mum's very sleepy and I have a feeling she's not going to get downstairs to see the Queen or have her Christmas meal there but she could still surprise me. Perhaps Boxing Day will be better.

At least the radio is good tonight(better than the TV)unless you like soaps, so perhaps we'll just enjoy each other's company and listen together. I think it will be a case of taking the Christmas meal to Mum. She's still talking of having it and yes, some Christmas pudding.

Update Three:Not the greatest Christmas we've had, please let tomorrow be better. Mum has slept most of it away. If that helps Mum that's fine by me but if its our last together I'd rather treat Boxing Day as the one to remember. It can be our Christmas Day. I did get a Christmas meal of sorts into her(more to build up her strength than anything because she had not really eaten anything)We did not even pull a Christmas cracker.

If she's well enough tomorrow, we'll try again and see if we can eat some Christmas Pudding. I'm still washing, more little disasters like the chain on plug for the kitchen sink has snapped. And a pillow I washed and tumbled dried has hole in it and feathers are in the drier and on the carpet where I pulled the pillow out of the drier. By the way how do you stop pillows from going a funny shape after they've been in a washer?(I had to cut into the pillow and try and smooth the filling back into some kind of shape so they were flattish again)Minor annoyances in the great scheme of things.

I think tonight rather than try and grab some sleep whilst keeping an eye on Mum I will stay up all night and keep an extra special watch over her.

I want a better day tomorrow as from Tuesday the carer returns and we start all that routine again and we know not what the future holds(Well, we have an idea but not how long we have and how soon difficult things could become)I worried about the cancer but I am more concerned now about Mum's memory problems/confusion but mostly likely if Mum is tired. Its terrible having two serious things to worry over.

Christmas Eve And...

2011-12-24T18:34:00.007Z

We've done as little as possible(other than my shopping trip)

We're just enjoying each other's company and thankful that we have this Christmas at least. We dare not look too far ahead and are living one day at a time.

Mum seems to have her appetite back and I am not having to persuade her to eat.

She's had scrambled egg this afternoon, soon we'll have some soup and later on probably a slice of ham, chips(French Fries)and Curly Kale with some gravy and just possibly something to follow.

We can have it late as we are planing a rare night of TV watching as there is more to interest tonight than Christmas Night. Its mostly documentaries or compilation shows of people we used to watch on TV so it is a big night of nostalgia.

In amongst that selection of programmes Mum found out that a radio show given by Michael Bublé was recorded by the BBC and is available to digital viewers via the red button so she wants to see that.

We had arranged to have no carers over the Christmas period into the New Year but because of the District Nurse and Social Worker causing un-necessary problems recently it looks as though we only have today, Christmas Day and Boxing Day and they return on Tuesday.

Did we miss them today? No...as we said when things get difficult we'll ask for help and be grateful but you know what? Mum was relaxed all morning, not watching the clock and waiting for the knock at the door, the truth is we thought someone was calling but as the time they usual arrive went by we relaxed even more.

I did what the carer would do(easy peasy)and its been an easy day and she's been really easy to look after. And it could be that way most of the time.

The District Nurse calls weekly and I have access to the Social worker so there is plenty of time for me to ask for help, there is every opportunity for the District Nurse to see how Mum's health is generally and how her tumour is doing and the option to bring in help. And see if any abuse was going on...I am unsure why they seem so interested in us. And I have seen cases where many people are looking after and being allowed to keep their loved ones in their homes and they don't hsve social or carers involved and you could ask why they are being neglected.

It is baffling quite a few people who know us. We have always been so well respected and liked even if I say that myself. If I don't get things sorted whilst Mum is alive I'll certainly have plenty to say when I am on my own. I have lost any respect or trust in the District Nurse and the Social Worker assigned to us. Be interesting to see if they can get that back.

I also appreciate that there are many decent and caring people in these professions who do a grand job. That's a pity because I only say what I do because of my experience of using the service as I have seen it that makes me seem hostile to some. I wasn't when we started.

Unfortunately, if I live long enough but due to health reasons I have to use the service or they put me in a home as I am alone, I haven't much to look forward to as I have no one to care for me the way I am looking after Mum.

Please God I'd rather be dead than have to end up in a home or have these people interfering if they behave like this lot.

Christmas Shop...

2011-12-24T13:50:00.004Z

Well, that's the Christmas shop out of the way. I did not buy much but today proves how small my fridge freezer really is but I've squeezed it all in...and it still cost a fair bit.

I realise only too well if I was alone how I would be looking at prices more and thinking can I afford that and what are the essentials. For now though all that concerns me is buying the best of what's available quality and variety wise so Mum has the best and I guess myself too as I have a medical condition too.

I was out at 6.30am(I can hardly believe that)but I thought if I don't taxi's may be difficult to get later in the day and whereas I buy what we need others stack the the shopping trolley's high and empty the shelves(and the supermarkets all open again the day after Christmas)so the one on our town is closed for 26 hours...

There is talk of(I heard on the radio)but I am sure this has already happened if the shop is owned by someone who does not follow the Christian religion they'll open on Christmas Day but now there is talk of any shop possibly opening on Christmas afternoon.

The only thing I was not really happy was with the choice or lack of bread/bread buns but hey, I have something. I understand the shop was busy all through the night. I thought that I may be able to get some cooked chicken breasts and some of the sliced turkey with stuffing I found earlier in the month but in the end I had to buy fresh chicken breasts(to cook later)and I did not want to pay £12-£15 upwards for a turkey etc...so luckily there were some Turkey joints(with stuffing)for £5 so I settled for that.

I had to pop back this afternoon though, as this morning my taxi driver managed to drop my large sherry trifle and though most of it remained intact, it was a bit of a mess and the lid came off.

I managed to get the last sherry trifle in the supermarket, just waiting for me.

I have unfortunately realised as I write this forgotten one item, but I'm not going back out for that, Cranberry sauce to serve with the turkey.

I was also thinking of buying a juice extractor so Mum can get the goodness out of vegetables if she does not feel like eating them but perhaps they had sold out of them or none were in stock. I already have a good food processor that also liquidises and an older liquidiser that could fail soon. They're fine for making smoothies and blending but that's still not the same as making a juice from fruit or vegetables.

I'll pop into another retailer later in the week and see what they've got. Perhaps there could be some in a sale. In the meantime I found some vegetable juices already in cartons so I've purchased some and extra cartons of tomato juice.

Its funny how tastes change I would never of eaten tomato soup, tomatoes or drank tomato juice now I quite enjoy them all.

There Have Been...

2011-12-23T19:06:00.002Z

some new developments that seem sinister(again, I'm not supposed to know of)and if this is our last Christmas together its put a damper on things(I have been lied to again)

I have talked to Macmillan Nurses, my local carers association and another charity. It is difficult because everywhere has closed over Christmas and what may happen is pencilled in for next year. But there is a limited amount of places I can turn for help. To some extent out of three places contacted so far, little can be done.

I am wondering whether a solicitor should be considered because if I don't go down the legal route I'm still stuck with the people I am unhappy about. I say that I am unhappy(Mum isn't exactly cock a hoop about it either)

I could try and sort this all out and for all I know I could lose Mum before I get a satisfactory result if one is possible.

It seems I can change the Social Worker for what good that will do...not much in the way options then.

Oh well, Happy Christmas everybody!

I Guess It's Safe...

2011-12-22T12:39:00.000Z

To say that they are not coming...we were ready for the carer at 9.30am(well, the relief carer...)our's is at a funeral today.
It's midday thirty and there is no sign of anyone, it looks as though they have forgotten about us!

A Sad Day...

2011-12-21T19:10:00.007Z

I have helped run a forum for many years and we were a lovely bunch of people who rarely if ever fell out with each other. Disagreements were few but different views were treated with respect and you knew how to deal with problems if they arose. We had a crisis some years ago but weathered the storm.

But over the years people do leave and now the membership is probably standing at approx twelve people but these things happen. Out of those twelve some rarely post so that means the core membership is approx six people. There are still some lovely people there.

Some of what I write here because they are/were my friends I have posted there too. They wanted to know how things were but I have been accused of self pity and been criticised about how I have reacted to the help we are receiving. The last straw was that someone said something really horrible about Mum(I won't repeat it here, it was quite disgusting)

In the past some would have been finished or warned for saying less. I don't want anyone to take sides but I would've hoped that my fellow mods would've said "You have crossed a line" withdraw that remark there is no bases for saying such a thing.

Say what you like about me but not my defenceless seriously ill Mum.

I would say that wouldn't I, especially as you are not hearing all sides but I refuse to say what I found offensive. Clever people on the net probably will be able to find it(though the forum was mostly private and you had to be a member to read everything)we tried to protect our members.

I have also had(I must protect their honesty)but it shows how I keep what I am told to myself, someone admit they have said nothing because it could divide the members and some may talk to her or decide not to, damned either way. No, all that had to be said was "Withdraw that remark, you have gone too far!"

Again I'm not asking for someone to take sides.

And today I discovered the argument had flared up again(By chance)about something else I had done(but I had not)totally innocent and only discovered this by chance(the same person/people again)once again I had no support.

How sad to have who I thought were friends during our difficult time to have this happen. The only good thing is that a number of people did not want me to leave and return. Some apologised for being cowards and not saying something and many have asked to stay in touch and have given me an e-mail address so some of my faith has been restored.

And privately those who have stayed in touch are less than complimentary about those who said such hurtful things. I suppose the truth is that when there only a few people keeping a forum going they are frightened it will fold altogether.

Some thought I would go complaining to the person who pays for the forum to be online, If I do contact that person it will not be to slag the board off just to say I am no longer actively involved(I'm just popping in and tying up loose ends until I am banned, my access is blocked)and though still officially a moderator I am reluctant to do anything for fear of being crticised. Would I post again/ Really, only if I felt I had to defend/justify myself because the war of words breaks out.

I know that if the board is closed down plans are afoot to kind of launch a new site where those who are suddenly without a home can go and resume from scratch. I won't be invited.

So I have mixed feelings today...and you feel bad because of all the years you've wasted.

Now what else can go wrong?

At least I have not named anyone nor said which forum it was...

I've probably created a rod for my own back writing about this here and no doubt this will be mentioned at the other place as some read this blog, I probably should've kept my mouth shut but when you feel sad sometimes you need to say something(I suppose its a bit like writing a diary)

Mum Had A Bad Night...

2011-12-20T08:43:00.003Z

They are happy how Mum's tumour is and another problem she has appears to have improved. However, Mum did not feel like eating yesterday so we were back to Complan drinks even though I had cooked an evening meal and it was ready to go!

I'll find a use for the sprouts, chicken and potatoes today so they'll not be wasted.

But of course this also means Mum did not have her bath yesterday either.

So she has to wait until 9.30am-10am for the carer to give her a bath as it is written into the care plan...

Well you know what? Sod the care plan...

Mum is awake...she wants to rest but does not feel like waiting until the carer arrives so even if the carer is booked for a forty five minute slot(and we still have to pay for that time period)I'm giving Mum her bath in a few minutes and taking her back to bed and the carer will just have to write what happened in her report/record that she fills in every time she calls.

Mum wants her baths when she feels like them, be it a morning/afternoon/evening and does not want to be tied to a particular time on a particular day. And though the care plan says she will probably have the minimum of three baths weekly, taking our bath care, it could be more than four.

I don't work to a time and so Mum can stay in the bath as long as she wishes and hopefully will get more benefit from them.

And this time I/we am not going to be dictated to and will tell the Social Worker that as well if she ever gets back to us. She may be busy with other cases but she often says she'll phone or call("I'll get back to you")she often does not.

I think I managed to get this home to the District Nurse finally after our talk yesterday. Alot of her happy disposition is over the top, when she arrived she kept waving and laughing and smiling as she came over from the car and now I don't fall for any of that guff, I'm sorry its not my nature but I was cool and non responsive.

All they do may be done with the right intentions but when they have a genuine, caring person like myself they seem determined to cause un-necessary problems(and they will probably happen sooner rather than later whatever we do)and I am so easy to work with.

Even now though the chair lift is better than a board across the bath but Mum still misses being able to lie in a bath and feel water around her body so its not the wonderful experience it used to be. Whoever bathes Mum they are a chew on.

When all this is over Mum is going to try and eat some breakfast(probably porridge and toast)which will build up her strength and release energy slowly.

Still Unsure...

2011-12-19T14:21:00.003Z

I'm a little happier after today but still a bit suspicious of the District Nurse. I was pretty cold with the District Nurse and it resulted in us having quite a heart to heart but again(Stupid me)I got distracted by a second person who came along(who was introduced as a colleague who might fill in when someone is missing)but later on it came out that she was a "Team Leader" and that means she is "The Boss"?

So not exactly who she was said to be and...the Nurse obviously felt she was going to get a bit of a difficult time otherwise why bring a second person again?

One thing Mum remembers is the Nurse when talking with her was that she remarked on Mum's clean finger nails so that still rankles and shows it was one of the problems in the first place.

But I was told, that I am caring for Mum well enough and doing a good job so maybe I'll have to accept the situation for now, the only problem is we are still stuck with the extra care that has been arranged and the extra cost.

They are very happy with the progress regarding Mum's tumour.

She has to have three baths with the carer's(not four as was mentioned on that meeting I had last week)but as Mum is having at least three baths each week and she prefers to have them when she wishes and stay in the water a bit longer so she gets more of a soak and benefits from that but then that means taking today as an example she wants her bath(and wash her hair)before going to bed after having been downstairs watching tv earlier but then that means as tomorrow is marked as a day for a bath with a carer Mum has to get up at 9.30am and have another so she's had two within twelve hours.

And Mum doesn't like getting up that early(I don't)when I don't have to and chances are as the carer leaves Mum will go back to bed to rest even if not sleep so the visit by a carer is actually a bit like a nuisance rather than benefitting Mum.

Mum could've had three or four baths with a carer under our original agreement as they were visiting four days per week already.

The Cost Of Care(Money And Physically)

2011-12-17T15:52:00.005Z

For approx 360 minutes of care a month we pay £70 a month! Now, if/when Mum has everything done for her by her carer to make her comfortable, possibly you can say its worth it!

Then again, by the time someone arrives, prepares for the task at hand and depending how tired the person is being cared for or immobile, some time is lost. So you'll be paying for some unused time. If it is worth £70 for 6 hours. Now we have been forced into having another 480 minutes(three extra visits of extended time)that is now 14 hours each week so we will now have to find approx an extra £82(That's £152)each month(My figures may be slightly off)

What is a family relative worth who is caring for a partner, a child, a mother, a father etc...who is there for the remaining 616 hours per month. No wonder governments prefer to keep people in their own homes and to be cared for by family members.

You'd pay much more if loved ones were in a care home and/or the government and councils had to pick up the bill.

Mum's worth it but we were told "You will have the extra care whether you want it or not!" The decision was already made so the visit form the Social Worker and District Nurse was a stitch up!

No one asks you if finding the extra money will be a problem and to be honest I can at present do what the carer does and could quite easily bath Mum and as the baths carers do are so quick, with me I could allow more time to soak in the water and feel the benefit of it. To save time I usually have already run the bath water and positioned the chairlift in the right position.

And I also think that the care that I am giving is more difficult. And I think I do it all very well and in hand, that's why it hurts to have been lied to and treated as I have.

Someone said you do realise that you will be discussed by the care and social services departments...of course I do, I am not naive but that is different to being lied to or being misrepresented. And not being allowed to answer questions directly or defend myself and put my side.

Someone elsewhere has come up with idea that Mum is not wearing any underwear and is naked or semi-naked and her dignity is being neglected, I don't know where that person got that idea but can I say she wears underwear and would if she was going anywhere, in a public place or expecting visitors at home or moving away from the bedroom and her bed would wear a skirt or something. It was suggested Mum had said she did not want to wear underwear, again I cannot see anything to suggest that.

I tried to look over my posts to see how this misunderstanding arose but cannot see it so far.

And whilst I am on I am the only living relative and I love and care for Mum as any son may and yes we are close but there is nothing sexual in our relationship. And without me Mum would probably be in a care home where as good as many of them are and those working there do care for their residents, she'd never get the one on one care that I can offer here practically 24/7.

Unless, I decide to let it go or take it further with those involved. Reading what I have written, you as a reader can only agree or disagree with me or those who have instigated matters and caused un-necessary problems. And work from what I have written which you may see as biased(I have tried to stick to the facts)I guess social services see so many bad cases and being untra careful they may have got hold of the wrong end of the stick but its difficult when you are a genuine caring person in the community to be shafted like this.

So I'll post about this again should something unexpected happens or there is some response should I try and reverse what's happened or defend myself.

So What Can You Do?

2011-12-17T03:43:00.003Z

Bit personal now...I mentioned one thing that had been complained about and probably went against me was Mum had dirty hands at the minute she was visited. They are checked often in a day and I have a variety of ways to keep the hands and nails clean including a scrubbing brush, water, disinfectant, creams and that alcohol based hand wash liquid.

There I am at 3am this morning...I changed Mum, made a drink for her and on coming back with it found her hands were dirty...so I cleaned them immediately but what if that Nurse had happened to call, I thought Mum was OK because the last time I looked...she was...so I say go straight up.

I could be innocently in trouble and seen as not to be caring for Mum. And yet in this example when I did bring the drink into Mum she herself mentioned her hands needed cleaning.

Unless you tie someones hands down you cannot stop them doing what they are going to do.

Most reaction has been on my side and they think that I have been treated badly.

Only one person has seen it as a case of me wanting to be centre of attraction and not keeping Mum's welfare as the priority...Caring for Mum and being there daily, twenty three and a half hours shows that she is my priority and even after all that's happened I am still doing that. If I am such a rubbish carer why am I still being allowed to do that?

My complaint is that I have been lied to, stress and worry has been given to Mum's carer and myself. Mum doesn't like how I have been treated and thought that her original carer was in trouble and she keeps saying "She's done nothing wrong!"

I was led to believe it was the carer who was being criticised and it was me all along and the not knowing what is written about me in the official files doesn't help either. I don't see that as me putting myself above Mum's care.

Someone who sees things differently said..."I don't care what they said about me when my Mum was ill as long she was given the best care possible!"

Neither do I if its because I am fighting for the best care and they say I am a pain for that kind of reason but when you are criticised for the reasons I have been and they've tried to cover it up, that's a different matter.

Mum was happy but is actually unhappy now with what has happened and doesn't like the nurse or social worker any longer. And I have not influenced her. And she has told our carer what she thinks of them.

And they said Mum was incapable of making a decision on her care(if you catch her half asleep perhaps not)they did when they called but Mum has had long talks with me about it and known what she's talking about but she may not say much because she doesn't want "bother" and hopes it will just go away.

Its Eating Away At Me...

2011-12-16T15:06:00.001Z

Its bad enough having a Mum who has serious health problems and also age against her and accepting our time together could be very short but all this with people and departments supposedly with our "Best interests at heart" have added to my stress and worries at a time they shouldn't. I have always done everything expected of me and more and yet I feel as though I am being scrutinised to the point where it is ridiculous.

If a drop of tea gets on a blouse, even so small you'd probably not see it I feel I have to take it off immediately just in case...I can imagine "That" District Nurse finding an excuse to cause further problems. As they never announce when they are coming you are waiting for the knock on the door. Even though I am doing nothing wrong, I feel as though I am...

I have lost my respect and trust in those who are involved in our lives and I do feel as though our lives are no longer our own. I feel no one has been honest and straight forward with me. I'd say us but as I am the main carer they tend to talk with me(at me perhaps is more appropriate)

Other people have to look after their partners or other family members, are they are all being scrutinised as I/we are. Is it because we have carers coming in?

I don't ever remember asking the District Nurses to call, I don't remember asking for a Social worker or carers...they just came out of the woodwork and people used to say don't turn down help if it is offered to you, I have and I seem to be getting shafted.

I think those who call in the future will find me less talkative and they will get the most basic of answers.

And another thing...These services say they work with you/as a team but I also realise more than ever even if you say "No" to something they want to do, they will do it anyhow so your wishes are largely ignored and therefore you don't have much say in what happens.

I Have Had It Confirmed From A Reliable Source...

2011-12-16T10:15:00.004Z

There was never ever a complaint against the care company and/or the carer as I was led to believe and my carer believed...

The complaint was/is about me and my care(or lack of)so all the guff I have been told and "How well I am doing etc..." is lies.

And I now know that the care company has been quite fourthright regarding refuting the criticism of their care of Mum and basically told Social Services "Where to go" and now it would appear that I am on my own with a black mark against my name and no idea what has been written about me.

I have not therefore even had the right to have my views put alongside what is their official files and on the quiet from my sources the opinion of social services and how they go about things isn't very high.

So at the risk of getting in the Social Services bad books I think that I must take this further and yet I keep holding back for the fear of all the stories you hear about how if you upset them you'll pay for it in the future.

I Don't Know How I Feel...

2011-12-15T14:45:00.008Z

In some ways better than I did but I still feel that I have been lied to. I was definitely told that they were unhappy with the care Mum was receiving so naturally that sounds like criticism of the carer we have had. How can it sound like anything else. If you find out that someone has phoned the care company to complain, what does that sound like? How can you take it any other way?

It would appear that we are still having to accept an extra three days per week to our care package so we'll have someone 7 days a week(not 4 days as present)

Here's the twist though...we still have the carer that they were seemingly having problems with and now it appears that the complaint that went into the company's office was not aimed our carer specifically(but you still wonder if that is the case who the complaint was aimed at)So I am still suspicious...perhaps that's my nature.

So reluctantly we have accepted the extra few days of care...so they have got their way.

But now this raises other issues, the way I was told about the situation they did say the care was below par...so if our carer is still ok to do the caring of Mum she must have been doing it right in the first place so then is the problem actually a criticism of me? And they are telling white lies by making it sound as though its someone else?

I still look after Mum approx twenty three and half hours, seven days a week. And I think I do one hell of a job. I keep on top of the housework(The house will never be a palace and the furniture/carpets have seen better days but its clean)and hey we're not likely to entertain so why worry, see to our meals and general care of Mum and in many cases I am doing what the carer is being paid to do. And not being paid...

If we eventually get allowed some extra cash it will be eaten up by extra costs for extra care and perhaps the need to keep the heating and lighting on more. And other things that are unexpected.

Whatever the reason for the change of the care plan and whoever they blame, why go about things indirectly...why not just come out and say what is bothering them and give me or the carer the chance to defend ourselves? They gave us stress and worry that we don't need and should not have at these difficult times.

Our carer says that she knows my Mum is well looked after and I am doing a sterling job but as a carer if she felt I wasn't looking after Mum she would say so to her boss and would be expected to even if just to cover herself.

If someone called unexpectedly just before or after something has to be done you might be criticised unfairly. I've had a knock at the door as I am in the middle of doing a task for Mum.

Also you are criticised for silly reasons like "Why don't you have a flowery counterpane on your bed?" and "You only have a sheet covering you." If you are warm and happy, and you only want a sheet over you why make a big thing of it...

A sheet makes it easier to get at Mum if you need to clean her numerous times say overnight or you perhaps are laying on a bed rather than in a bed perhaps all you need is a light sheet as our carer said a counterpane on someone so slight in build as Mum she may find it too heavy.

Equally, who would wear a skirt if you were in bed? Mum will wear a skirt if she's sitting, laying on a bed or moving around the house but its easier to change her if you don't have to keep removing a skirt all the time and it can save the garment possibly getting dirty and needing being washed earlier than it needs to be...

Now this may seem strange to some, I'm sorry if it does but in recent months I have found that I am warm enough not actually being in my bed but appreciate/prefer laying on the bed. I like the freedom of movement.

They said if Mum has a bath with a carer it gives me time to have breakfast and put my feet up...I haven't had a sit down breakfast for over 30 years...I eat if and when I am hungry...If I fancy a bowl of porridge or cereal I grab it when I feel I want to.

I don't think we are peculiar but maybe we don't everything as everyone else does or we're expected to and I'm not going to be forced to change my way of going on to suit someone else's view of how we should be.

So I think though I'll accept things for now...I will be taking up how the situation has been handled and how it did not help keep us on a better footing than we could've. I hate people who are not direct with you.

All the points that were put to me I could knock for six but I could've said more if I'd been having a one to one with the Social Worker. And I realise because of the extra speed the extra visits by a carer have been arranged it was already a done deal. As they left my home after most offices are closed, it could not have been done as quickly.

I did talk to the care company and they said the only way to proceed if we felt that we have to is talk to the Social worker again or go over her head to her boss. But we do have rights and can speak out if we want to. I will certainly talk to the Social Worker again.

BTW I wonder what they'd make of this...for whatever the reason Mum is warm but is laying on the bed at present without any bedclothes on her, they wouldn't like it!

The only two things I know of which the District Nurse appeared to blame the carer for Mum's hair being untidy(If you are having a sleep I don't think that's to be unexpected and Mum/the carer and myself always tidy her up)and Mum's hands being dirty.

I think I had changed Mum after the carer had been so she was waiting for something to be replaced, if the District Nurse had called 10 minutes earlier/later all would have been well. I think she has been very harsh. I think she may've mentioned Mum had no skirt on...who sleeps in a skirt? And as she wears those Tena type pants its easier for Mum and me to get to them if you don't have to start removing other clothes...

She does wear clothes if she is out of bed or downstairs.

I think that the District Nurse jumped the gun...

So we assume that we are going to get someone else but that has not been said yet and we've made it clear we're not happy.

I think if Mum had been asked "Does the carer wash You?"

"Does the carer clean you?" etc...

Mum would have replied yes and no and added comments but I think the way Mum was asked Mum probably just said that she was happy with the care she was getting and that probably wasn't as detailed an answer that they wanted to hear...

But we know that supposedly they did not complain about the carer but if you are criticising the care being given, isn't that exactly what you are doing? It does not add up.

Well, Here We Are At This Early Hour...

2011-12-15T04:41:00.003Z

and what I should be thinking about is Mum. Instead I am thinking about what happened yesterday and what will happen next. The District Nurse service and Social Worker will say they are only wanting the best for Mum too and that is why they are doing what they are.

But I am coping fine and not stressed and am ready to ask for extra help if I/we feel we need it and when Mum's health fails(If she lives long enough for that to be an issue)

For now we are doing great! Considering the difficult situation we find ourselves. Knowing even if it is a slow process things will get worse.

Unless we are at an end stage(and chances are we'd be using charity nurses that would do the work for free/donations and would stay with Mum overnight etc...in our home)the majority of work is still down to the main carer which is me.

Whether a carer is brought in for 20 minutes/60 minutes and daily instead of alternate days all that will do is add more to the cost our care and as I have said previously a carer could wash and clean mum and as they walk out the door I could be doing the very task they have just done so what advantage have we gained? It wouldn't make any difference if we had more than one visit daily.

I have discussed this(giving more examples of what was cited for the reason for the District Nurse initially making the complaints)and the Social Worker being called in and with friends. OK, I haven't put them on my blog, I cannot see any point but we all feel that even if the intention is correct it all seems a bit strange. And has been handled badly.

I am still unhappy that I was not see alone by the Social Worker and I was press ganged or disadvantaged by having both turn up together showing a united front.

I may get into some trouble but I really am tempted to phone the care company and tell them what is happening is nothing to do with us and we were happy with the care we were getting and we are as unhappy as I am sure that they are with what has happened and I don't want to see someone doing their job correctly having a black mark on their career but when you are dealing with some departments connected to the Government you worry what pressure/power they have and how much control you have over your own lives especially when you probably have to face the same people after kicking up a fuss and saying you are unhappy.

They told me that we are all working as a team for the benefit of Mum but it was obvious that I was being ignored by these officials and even though I was still saying "No" to the changes and what they are planning(and Mum felt the same when I told her)they are going ahead regardless.

I actually feel(but I don't I could actually do this)like telling them all leave us alone and stop them being involved but they'd take no notice and would probably use some legal procedure against me.

Its too late for this week and being near Christmas doesn't help but I am even thinking(though I don't know what they could do)of askingfor help from the Citizen's Advice Beaureux and see if they could offer any guidelines we should follow up.

Tell Tale...

2011-12-14T11:49:00.018Z

On the whole everything is going well with Mum and she is quite bright...

My problem is actually with the people who are supposedly watching over Mum's care...

On Monday I mentioned that I was having to do some housework as I needed to look for a disc of software for when the computer repairman was going to call in the afternoon to install something and finish off some tasks.

And I kept getting interrupted by callers such as the District Nurse. And if you are doing one task...you cannot do another. I was up to my eyes in it!

She asked some very strange questions and made some comments that seemed general chit chat, she hoped I would not think anything of them. But I am very astute.

After she went away, within a short time "Our" Social Worker phoned saying she'd like to see me later in the week(just happened to be thinking of us and hadn't seen us for a number of weeks)but by certain things she said, she had obviously been talking to the District Nurse.

Then, yesterday we had a call from another person who works in another department and she just happened to decide to call the same week by chance. And again certain things said triggered my mind and I realise that it is obvious this person had been talking to the District Nurse too.

And the one thing that seems to be driving this are questions about my care of Mum(though they are careful how they say it)you know they'll start of by saying "You are coping very well but do you not think that..." and the District Nurse seemed to be doing a lot of questioning about the service our carers are giving Mum when they call.

We have no complaints about the care(for what it is)and Mum even gets a bit tired having someone call at all even though she likes our carer. If Mum becomes very ill or I feel unable to cope I'll ask for extra help but to be honest we could actually manage without the visits we have already. I was talked into it to some extent.

I realise that we are being talked about and you do wonder what is being said about you.

I am not supposed to know but I also realise that the same District Nurse has phoned into the office of the company that the carer works for raising concerns about the care Mum gets and I'd already said to her we were happy and that our carer does more than she should and stays longer than scheduled. So I am bit annoyed to discover this has happened without me being told directly and first.

In some ways its good that all the departments are talking with each other and working as a team but in another way they are causing un-necessary trouble/ill feeling.

I've explained in many ways Mum's bedroom is like a bedsit where she can sit at the window and watch what's happening outside, she can listen to my mp3 player and enjoy lots of music or read something(Mum has talked of having a TV installed)It is warmer upstairs than downstairs but she does go downstairs if there is something she wishes to watch on TV and sometimes for her meals.

If when she is able she has access to the bathroom, toilet and everything is on one level so being upstairs makes a lot of sense. Its warmer too.

Also, a carer can do what she is meant to but within minutes of leaving I could be doing the same task the carer has just completed. We cannot have a carer or nurse here 24 hours a day and I am the main carer.

The impression is that they want us to have someone here every day but we do not feel it is necessary nor could we afford it at this time. Already for approx 100 minutes a week it costs approx £70 per month.

So if it was increased in frequency, more calls per day/week what is it going to cost? And by saying that I am not saying Mum isn't worth it.

So as I await the Social Worker this afternoon I am debating whether to be blunt and basically have it out with them(whether that make us popular or not)or whether to try and find a way of making my points without getting off on a bad foot about what's happening.

When I needed help from the Social Worker and left a message for her weeks ago regarding possible problems about Mum and myself getting to hospital I heard nothing...where was she then?

I am also sure that she walked past me some weeks ago and deliberately kept her head down and avoided eye contact in the town centre and all she'd have had to do was say "Hello" not get into a conversation but when she comes today she'll be saying that she cannot do enough for us...

The District Nurse service is a valuable service and I am sure that most of the time they do a very good job and are dedicated(They often are used in cases where people need to be cared for "In the Community" and often have serious long term conditions/illnesses so they cannot be kept in hospital etc...but lately they said they were going to call twice a week(but its still only a weekly visit)so even they do not always do what they say that they will.

Also, on the grapevine I heard one topic brought up was Mum having dirty fingernails(I am always looking after her hand care with cream, soap, a scrubbing brush and so on)and so does the carer(even Mum herself)Mum has always looked after her hygiene...but if you just happen to hit a time between cleaning sessions as perhaps the District Nurse may've its wrong to think that's like that all the time. I can wear protective gloves but its quite easy for Mum to accidentally get dirty hands. And again this was the day/time where I was very busy looking for something and waiting for someone to call.

It seems a case of "Jobs Worth" for the sake of it. It's times like this when you start to wish you did not have to use such services and could go private and this is when you see why such departments are disliked or treated suspiciously by the public in general.

Could be an interesting visit...

Update:It was very interesting and to some extent I am very angry. Even if I was to say "Its all for Mum's good and her well being!" I feel as though I have been forced into accepting what "They" want us to do. I also felt as though our carer is being singled out as though she is not doing her job. And both Mum and myself are perfectly happy with what she has done.

The carer washes and cleans Mum. Sometimes a bath, sometimes a blanket bath. She checks Mum over regarding the area that is a problem and applies creams etc...She dresses Mum. I have seen what she does(she has often stayed longer than her official allotted time)But this one District Nurse has felt that she should make a complaint and has caused un-necessary trouble and worry for us and our carer.

I appreciate you hear of some horror stories and of some carers not doing what they should or are paid for but the crazy thing is that other District Nurses have been present when the carer is doing the work. And seemingly they've had nothing to say so must have been ok with what they saw.

I was able to dismiss most of the things that there was concerns about.

The upshot is that we are now being forced to have a carer every day not alternative days and I think that they are trying to stop us having a break over Christmas and the New Year.

I'm not turning down offers of help, I never have, if we need extra help I will ask.

Why now? We've had our carer for almost 3 months...

But here's what I did not like...I thought that I was being seen by the Social Worker on her own.

Instead, the Social Worker and the District Nurse turned up as a team. If I had been the Social Worker I would have listened to what the District Nurse had to say, then myself and make a decision or compromise after what I was told if I thought any action should be taken.

But because they turned up together I could not say all that I might've. And they had one little trick planned...I realised after they had gone...The Social Worker started to talk to Mum asking what the carer does for her and in the meantime the District Nurse occupied me so I could not hear what Mum was saying or that I could not influence what Mum said.

It turns out Mum's fingernails were a little dirty when the District Nurse called(I wasn't supposed to know that and maybe giving that example I have blown my contact and questions may be asked how I knew that)

Well its not worth going into detail why that might be but I know that the carer and myself are always cleaning Mum's hands and also I use some that special liquid you can buy to kill bacteria if you haven't access to water. Perhaps just on that visit it was so if she'd called 15 minutes or earlier it probably would not have been the case.

Mum's hair was untidy...(she'd only been awake for a few minutes)and who has tidy hair if you are in bed asleep? And Mum does comb her hair and keeps it tidy normally.

There are other examples but as I always say no matter how many carers you have or how often they call its what happens the other twenty three and half hours that no one is coming to see to her. You can't have care 24/7 and again with extra care the cost will increase too.

And they are saying Mum isn't capable of making such a decision but I realise that was because Mum had just woken from a little sleep and was still not wide awake and because Mum kept saying she was happy with the care she receives but perhaps did not say "Well, I get washed and dressed on a morning" etc...just that she is very happy with the care she receives and they have ignored what I said.

And as for not understanding...when I went upstairs after they'd been and told Mum what they had agreed and decided, Mum said herself "I don't want it!" and she is worried she is going to loe the carer she has become used to.

I am not sure where we go from here...I think the Social Worker had no right(possibly later it would've been ok)to arrive with someone else who was involved in the situation.

She should have talked to me alone.

I think that the District Nurse even if she felt she had to complain should've talked to me in greater detail first. If she had I don't think the complaint was necessary and could've been avoided.

I don't think it has been handled correctly at all. They said that they are not the "Heavy Squad" They seem pretty Heavy to me even though they keep trying to say its all for Mum's good.

To be fair I realise that you are only hearing one side of the story. You do start to feel as though your life is not your own...I don't lose my temper but did a little the way I was being treated and not being listened to, I don't like to lose my temper, its not me...heaven knows what they said to each other as they drove home and what will go in their reports which we will never see.

To be honest the carer has done much more than the District Nurses have in all the time we've been visited.

The only good thing we've had from the DN's is some pants to save us buying them. Anything else has been given from other departments of the health service not the District Nurses.

And as I say, any care has been done by "The Carer"

Three District Nurses call once in a while and the other two seem to be ok about the care...just this one seems to be a bit over zealous but she's convinced the Social Worker so...

As the carer is doing all that she should I feel bad that she may be taken off our case or have a warning on her working record and I am so tempted to phone the company and tell them we were very happy and it was not us complaining(We'd just filled in a customer satisfaction survey which was all positive...now this...)

I Really Cannot Afford It...

2011-12-12T15:48:00.008Z

But what can you do?

My desktop PC's are second hand(maybe third or fourth hand)but they do all that I want them to(and I have a decent computer repairman)who helps me and I know that he is genuine.

Sadly, as reliable as the machines are they do fail and finding the money to get them working again can be a problem.

But listening to the radio and using my computers are what keep me sane.

So after a number of years I have had to invest in a new laptop to use when I am downstairs...(My desktop PC's are in my bedroom)

I cannot always listen to programmes when they clash with each other and BBC Radio 4 Extra is only in stereo if you take the satellite feed(On DAB the other main way of hearing it, its in mono)for some programmes it doesn't matter(readings of books or programmes produced before 1967)but drama's, comedies and especially Sci-Fi material really make use of stereo sound.

It has cost a fair bit but I know that he would buy something that's fancy and expensive for the sake of it. So I have a laptop and a wireless mouse to go with it. He found a really good offer and did save some money so it was worth it.

He looked for a bargain and he says this has all that he hoped it would and was the one he had in mind for me. It would seem to have a decent processor inside of it.

Just waiting for it to be set up and returned to me.

The most annoying thing today was I spent 4-5 hours looking for a disc with some software on it which I needed and I could not find it. I said my bedroom was a tip.

Well, at least its tidy now(even if I have some black bin liners to go through to decide what to keep or throw away)

The disc did turn up by the way...it was in the drive of a computer I had not used for a some weeks, if I'd only looked I could've saved all that work.

Then again it made me do something about the situation.

Now being a laptop the speakers aren't brilliant but whilst waiting to watch something on TV I was able to play the André Rieu DVD I wanted Mum to see using the laptop so she has seen it.

Of course I should add I thought my laptop was going to be a letdown after attempting some audio recording as it was distorted and everything sounded as though it was happening in a large empty room but some further fiddling about with hidden settings I think we've got it just about right so I am very relieved.

You Know, Thinking About Mum's

2011-12-11T13:45:00.002Z

situation and the refusal of having Chemo Therapy...

And the fact that it looks as though they can control it to some extent even they don't cure it made me look at my own illness. And I'd say I'm in a similar situation.

And it appears that Prednisolone(a steroid drug)and Azathioprine(An immune depressant drug)are a form of chemo. It appears that Azathioprine isn't used any more or rarely as part of officially chemo and is used for other illnesses especially Rheumatoid arthritis.

Azathioprine is given to patients who have had a transplant to avoid organ rejection.

So no wonder I feel aches and pains and tired and my condition varies daily.

That's all I need to know for now...I've never asked what stage I am with my kidney problems and knowing more may just add to the worry(possibly un-necessarily)I am just happy to hear that generally they are happy with how things are and to get away until the next check up. I have had an extra 14 years I may not have had and I hope to have a few more yet.

The Main Terrestrial TV Channels...

2011-12-10T19:08:00.003Z

will no doubt pull in large viewing figures especially on Christmas Eve, Christmas Day and Boxing Day and for anyone born in the last 10-20 years will probably say that what is on offer is fantastic entertainment and of course if you follow some of the soaps regular that will be so but I still would like some of the schmaltzy Christmas entertainment specials we used to get when I was growing up and was a young adult.

I know things change but I have looked at what is being served up and there is nothing really that I feel is a must see or I find myself saying "Wow!"

I have a feeling that most of my entertainment will be obtained via BBC Radio networks and if I don't manage to hear everything "Live" I will be recording as much as I can and playing the programmes back during January and February. Or playing music via the PC/mp3 player from my music collection...

Another Positive?

2011-12-10T14:40:00.003Z

As far as I know Mum has short term memory loss(that's what it's been classed as)so far she only really has trouble if she is tired and at best the only trouble is remembering what time of the day it is and...whether she has had her medication. In the last day or two Mum has even improved regarding both of these things and if made to remember she can often work things out for herself.

No one(so far has suggested that its Alzheimer's)so it could be a slow burner(I hope)and the same is true of Mum's cancer(thank heavens)

This became more clear today as I met in the supermarket an ex neighbours son and his wife/partner who passed away some years ago of something similar to Mum, he said after what I told him it was a good sign that Mum had responded so well to radio therapy and that we have been told it is a slow one.

He said that "They do not mince their words" and if things are looking really bad "They will not hide it and will tell you outright!"

They told his Father everything.

They both said "Don't think about the future and live for today" and be thankful for what appears to be better news than it could've been.

They are also in a similar frame of mind about worrying about "Will they have a roof over their heads" in the future with all the changes coming in but they take it one day at a time.

So again, for now I must remain upbeat.

Today Has Been A Success...

2011-12-09T21:18:00.002Z

regarding eating.

Ok its small portions but its almost like a day should be(the equivalent of Breakfast, Lunch and Evening meal)

Mum has had porridge. Wholemeal toast with Manuka honey.

Soup containing pea, ham, chicken, leek and potato.

Quiche and baked beans.

Banana flavoured Angel Delight made with semi-skimmed milk.

And various drinks including Complan, Tea, Water and Blueberry fruit juice.

That pleases me.

So if she eats less another day I don't feel so bad.

Sorry Wrong Number...

2011-12-09T12:35:00.003Z

A fantastic and classic old American Radio drama in the series of the 1940's and 1950's called Suspense starring Agnes Moorehead...

In this day and age unfortunately there are companies and individuals that annoy and terrorise people daily...

Silent calls where no number is left to contact(often dialed out by computer)It may phone hundreds and thousands of people and there are only a handful of people at the call centre picking up on the calls and if you don't pick up you are left wondering who called. If you pick up someone may be trying a scam of some kind.

Thankfully, we get very, very few of these calls and can go for months without being troubled.

Unfortunately, when you are in a situation as I am with someone seriously ill and many people wanting to help or you need to be available for possible phone calls, you have to be there to answer every call. Sometimes you miss a call and you can phone back if they leave a number. Usually, you get the standard lines "We do not have the caller's number" or "The caller with held their number" With either you have an idea if its a private number or a company. But you know at some point they'll probably call again.

Today, I am getting calls that are not ringing long enough to even get to the phone but I did check the last time it called to see if a number was available(there was)

I decided to phone it(I rarely do that)but I am expecting a delivery of some medical items for Mum and I started to think could it be the driver checking I'm in to collect the delivery...I phoned it but every time I hit the fifth digit it kept saying the number has not been recognised.

I phoned our telephone company and they phoned the number for me and they say its coming in from abroad and is not a complete number. So its a funny number! I feel a little better now knowing that, in normal times such calls are a nuisance, at times where you are having serious family problems...it can get annoying.

Unfortunately, what you can do about such practices is somewhat limited but we have done all that we can to protect ourselves.

Strange Anniversaries...

2011-12-08T17:26:00.003Z

Today in 2008 Mum went along the landing to the toilet...it was around 8am.

It was a horrible Winter's Day and dark...somehow within minutes Mum was at the bottom of the stairs. Half asleep did she take the wrong direction, stumble, faint, lose her balance? We'll never know.

I managed to get her back to bed but by night we knew she had seriously damaged herself.

She had crushed a vertebrae. Remarkably we got Mum over that and they were happy with her progress.

Almost a year later she rolled out of bed and managed to break her right hip. Again, any other time she probably would've been lucky but...they fixed it and again Mum came home...

And now the big fight of her life, hopefully outliving, fighting, beating or living with cancer(and all the possible treatments and visits to to hospital to see how its progressing)and wondering how long she has with it or if its slow how long before natural causes takes Mum away. This is probably the most worrying of all that has happened so far though we thought the other two were pretty bad.

One thing I started to do from the first incident is leave a light switched on above the landing switched on all night which shines into all the bedrooms if we leave the doors open and I always will leave that light on.

When I am in my own bedroom I usually leave the bedside lamp on all night and I sleep fine.

I've switched the lights off to see what it used to be like and I find it hard to believe that we used to sleep with no lights on. The difference is amazing.

Its a pretty awful day weather wise today here in the North East of England but nowhere as bad as what Scotland has been experiencing.

And as I add a few lines at the end of the day, it is so cold that even with the central heating on the bedroom is cold and we are needing some extra blankets to stay warm...and I'll worry about the cost later, the heating is staying on overnight.

A Friend Said Something Today...

2011-12-06T16:44:00.008Z

And I'd never thought of it this way...

There is terminal cancer and incurable cancer...and though either way both may get you...the difference is that if fortunate incurable still means that they can control it to some extent and you may still be around for quite some time so unless you are told bluntly there is nothing that can be done, there are still more positives than negatives. And yes, they are getting cleverer all the time...

And as an afterthought isn't that the situation I am in with my kidney problems?

I am on strong drugs that control and dampen down my body's immune system to stop it attacking my own kidneys, the drugs I take are very toxic but I am still here and under in other circumstances I suppose I could be seen as having something terminal but what has happened instead is that something incurable for now is being stabilised. It still gives many problems but you live with it.

On the other hand having had a few days to think about it...

So far no one has use the word terminal or inoperable ...I/We have had to come to that conclusion because they say chemo is out and I assume surgery. If Radio Therapy could kill it on its own, perhaps it could be beaten...but if they are not giving(perhaps for all the right reasons)any of the treatments that could halt the disease, they are making the cancer terminal/inoperable by their actions and are allowing it to spread. I am unsure how I feel about that. Especially, when it still seems to only be in the one spot which is accessible and carer's, district nurses and myself can see such an improvement already after the Radio Therapy.

And we have to assume that we were told the truth regarding Mum's scan approx 8 weeks ago which only showed slight fluid on one lung, some osteoporosis and a slight mark on the liver which they hope is not it spreading but could have been there for ages and harmless. The fluid could be drained so that scan seems pretty good to me.

I don't know if they will say Mum should have another scan to see how things are going or just look at how the tumour has reduced and leave it at that. With the option of calling her in every so often to monitor things and perhaps give more radio therapy when it is safe to.

Unless My Budget Is Seriously Curtailed...

2011-12-05T16:39:00.000Z

I have decided that if I am alone whilst I may go for simple and quick food more often than perhaps I do now...I am going to cook lovely meals for myself and not give up on cooking a Sunday Lunch and similar fare etc...

This Christmas I still plan to cook a traditional Christmas lunch for Mum and myself(Turkey and all the trimmings)and followed by Christmas Pudding...but as last year I am not buying a turkey...nor a turkey saddle...Tesco's and I am sure that other supermarkets will do something similar...they have packets containing eight cooked slices of Turkey with stuffing and I found last year there was enough for a few meals and yes, sandwiches.

And as I do eat smaller portions and don't always stick to rigid meal times, I think with careful planning and the right foods in the fridge/freezer I should hopefully eat well.

And not just give up...

I enjoy cooking which helps but I find myself returning to what I would call comfort/traditional foods and they are perfectly ok for your health.

In many ways when food was on ration during the Great World Wars the British population was probably at its fittest and healthiest.

There's Always Hope...

2011-12-03T21:32:00.004Z

There has been an award given to a hospital to look into whether Radio Therapy actually continues to kill cancer cells longer than at first thought(up to twelve weeks)and by letting RT take its course and considering possible surgery that is normally carried out sooner, by waiting it may not have to be so invasive or drastic.

This would be fantastic if proven(but allowing for each case still being judged on its own merit)

I was told Mum's treatment may still be working three weeks after the last session and therefore we could still be seeing the benefit. But if the treatment could still be working up to twelve weeks, that could be even better news...I don't think that this is mentioned the article below...

Hospital Grant

It Just Gets Worse...

2011-12-02T22:37:00.008Z

Earlier on, as an after thought I put a link on a post saying how the cancer charity Macmillan Nurses were launching a campaign about how people with cancer are likely to be called in for a job assessment and basically asked why they are not working. Also, in an attempt to restrict any help received from welfare.

As I said previously who in their right mind would choose to have cancer and claim benefits? The people to ask for information are the Dr's and Consultants that are treating you.

The new tests don't allow you to submit information. There has to be something wrong with that.

My good friend Span mentioned its only a proposal so probably won't happen..

It has just got worse...

The Latest

I so hope that this story finds some broadcaster willing to give this maximum publicity.

I should add that of course some people will work whilst receiving treatment and find that they are strong enough either emotionally or physically. For some it will keep body and soul together but its being "forced" to attend these interviews and the reports of how the new benefit works in practice and how the assessments are conducted that worries me more.

People who can work, want to work, have to work will be doing so without being called in to an arranged and pressurised interview. Most in the population have a work ethic...so its a fair bet those not working are either too ill, have lost their job because of their illness or are out of work and probably few employers would take someone on with a known life threatening illness. Not forgetting the times you'll miss work because of being ill and/or times you need to attend a clinic or hospital for treatment.

Also, more contact should be made between those who assess you and those do the treatment and know you best, Dr's and consultant's and access to your medical records.

Many horror stories(anecdotal admittedly but too many to ignore)suggest that you are not able to submit information and tests are a question and answer procedure using computer software and boxes are ticked. You are unable to submit information in these assessments but today there is a news story that the Government may look into allowing access to private companies of medical records on the grounds of medical research. So that's alright then, you can only give information when it suits the Government not when you need to.

It won't happen but we should allow your GP to tell it how it is and stuff these private companies getting rich on the back of the ill and vulnerable. I may have said elsewhere some report that was mentioned on the radio news suggested that one in five people who are said to be sick could work and Dr's are getting it wrong when they assess their patients.

No one said how they came up with that statistic. But lets turn it on its head and say that means that four out of five are not fit so most of the time they are getting it right. And recently many who attend assessments and fail and take it to appeal actually get their benefits reinstated so even the private companies are getting it wrong.

Conditions do vary, what I suffer from(using last evening as an example) I was absolutely exhausted and could barely manage to get my body off the bed, I went out like a light and was all aches and pains for at least 12 hours.

Many tests these days have no give or take for changes like this and they are very rigid. They have to realise that one size does not fit all...

Another anecdotal example(not cancer related this time...)

A taxi driver was telling me that his wife is so blind that you virtually have to stand nose to nose for her to recognise you...she also has a condition that can shut down major organs without warning and is under a top consultant at one of the big hospitals in the area...she has been summoned to one of these assessments.

My Bedroom Is A Bit Of A Tip To Be Honest...

2011-11-30T18:08:00.002Z

I tidy it up and then something happens and it all gets untidy again.

Well, I have an incentive to do something about it...I purchased the new CD "And The Waltz Goes On" by the world famous violinist, André Rieu. I say that he's famous, we only discovered him late last year or early this year. He gives concerts with his Johann Strauss Orchestra across the world and has for many years.

He makes classical music fun, the concerts are colourful and spectacular, he wants you to enjoy the music and get carried away by it. Not necessarily sitting quiet and still in a concert hall. He does slip in a few pieces of music that are not classical and can call on some reasonably famous artists to do guest appearances.

He attracts an audience of all ages, creeds and colours.

What is great is that many of his CD releases include a DVD of a concert so you have both an audio and visual experience.

So Mum is going to come along to my room and watch the DVD on my computer.

I had a quick search through its content and I think it is one of his best CD's and DVD's yet!

To be honest I have another CD/DVD I purchased around Christmas last year of him which Mum hasn't seen. I think its a concert he gave in Australia.

So I'll save that for another time.

I have a Foster and Allen CD/DVD release from last Christmas too)Mum has heard the CD but still hasn't seen the DVD.

And I know there is a DVD release of Andrea Bocelli in Central Park New York but I have the CD not sure I'll duplicate and buy the DVD though.

I don't understand why with all the interest and sales of such artists radio and tv seem so reluctant to avoid doing programmes and features on a wider range of music than many play.

Thank heavens BBC Radio still finds room to offer a wider range of music even if it usually has to be aired off peak time or classed as being in the specialist strand.

Next week Carol King is doing a "Live" session and an interview during a weekday Ken Bruce show on Radio 2 some toime between 9.30am-Midday which is ok and though there is access via the internet and a player for 7 days...it deserves a better slot in the schedule(or a rebroadcast)

I'm not against new material, if I like it I'll listen but I still have to say though my musical taste is wide it still leans towards past material which I am still discovering but of late some of the new and most exciting releases have been where older artists embrace new songs and/or working with artists recording today...

And the new artists also embrace working with people seen as legends(Such as the new second CD in the series)of Tony Bennett appearing with artists like Michael Bublé, Andrea Bocelli, Amy Winehouse, Lady Gaga etc...Duets II. Similar idea to what Sinatra did some time ago...

A Mixed Report?

2011-11-30T10:25:00.005Z

The District Nurse did not seem so happy today with how things looked(I still think the tumour is smaller)but the skin surrounding it, is possibly redder but I think that is still the treatment causing that...and it will continue to improve...at the hospital they thought Mum having thinner skin, she might suffer most from what is like sunburn and so far other side effects have not materialised.

I still apply aqueous cream to the area that is red and barrier cream to the tumour area...I think Mum is cleaner and is easier to keep clean/washed since the treatment and the tumour has reduced in size.

We are changing pads regularly and keeping Mum dry. The DN thinks it could be burns from fecal matter passing by or some leakage but that has improved too. That's either because the tumour is smaller or the treatment has done something else to improve things. I say it should've been more of a problem before treatment/the diagnosis...when she was not being seen by anyone and we were dealing with something unknown.

I'm not saying that the sore skin could not be aggrevated and react if it came into contact with bodily fluids but isn't that why we are using various creams and keeping Mum clean with mild unpefumed soap.

You have to bow to the DN's knowledge and she has said how she's advised me to proceed(but I was doing all that she said anyhow)and saying that in her written weekly report makes it sound as though I haven't been doing so, even though I have...

Anyhow, instead of a weekly visit they are going to call twice next week so we'll just have to see what happens next...

I'll add and I think that Mum is correct, her back and arms appear to be putting on weight again so that's another positive to us...here's another...

I compared Mum's tumour size wise to being similar to the segment in a satsuma...tonight its nearer to being the size of a marrowfat pea...

Interesting...

2011-11-29T20:08:00.008Z

With or without the treatment Mum has had recently for her cancer and before she was diagnosed...Mum has taken paracetamol and codeine combined. The amount taken varies from a small amount to the maximum allowed.

Recently, I assume as the treatment kills and reduces the size of the tumour and Mum also has the side effect of what looks like sunburn in the same area, she has needed them more than ever.

Occasionally, in recent weeks from what Mum has said they have not worked. We toyed with the idea of asking for another pain killer to work alongside or instead of Mum's normal medication but today so far Mum has not requested or seems to be missing them.

We had been told by various medical people(from our Carer, District Nurse, Dr's and Oncologist)it is better to take painkillers regularly(say Morning, Noon, Teatime and Bedtime)even if not in pain to build up a kind of resistance for when it does come on.

Mum not asking for pain relief, is this because the treatment is starting to wind down and will not improve any more and so Mum's body is no longer reacting to the changes which could cause pain?

Is it because the treatment has done such a great job, what was causing the pain has been halted in in its tracks?

Was this the reason for Mum's pain all along and we did not know it?

Working on the premise as it stands...

Radio Therapy can and does for many, kill cancer. It can reduce a tumour greatly but the other important thing is that it can stop the supply of blood from feeding it and therefore starving it of nutrition and I hope that also means cancer cells cannot be carried into the bloodstream.

As far as I know and from what we have been told" It does not appear to have spread" especially going by the scans that were taken approx 5 weeks ago.

Now, obviously if/when they do a follow up which may include another scan for all we know the situation may've changed.

Tomorrow, Mum may ask for her painkillers again but today she is pain free, that has to be good.

A Quiet Day...

2011-11-28T17:55:00.003Z

Nothing much happening...I prefer it that way...

Plenty of sleeping, a little shopping(had to go out the fridge was virtually empty)and I have never purchased as milk as I do now. But if I don't I would have to go out more but two Complans and cereal/porridge and you'd be amazed how that milk soon disappears.

I think the treatment is still working on Mum as the sunburn area looks more angry than a few days ago(a small price to pay)if the tumour is still being attacked...sadly as can happen with sunburn caused by the sun Mum has a few small blisters that have appeared so I am making certain that she has plenty of cream to soothe the area.

A night of radio listening and a small meal for Mum and myself...(Mum had scrambled egg with added cheese, some chicken breast, heinz tomato ketchup and wholemeal toast)I went for a salad containing chicken breast, cucumber, tomato, egg, celery, lettuce, spring onion, carrot and branston pickle. So what we have had was tasty and reasonably healthy.

At least Mum has had something on her stomach.

Tomorrow is another day, we'll see what that entails...

Care In The Community...

2011-11-26T19:13:00.003Z

For all the criticism of care for people in the community and a lack of money coming from Government and local authorities and councils there are some very expensive places that look after people when you finally retire, become ill. Many struggle in their twilight years but if you are fortunate to have enough savings there are some amazing places still around taking up care of the vulnerable and able to make a profit.

When going to hospital last week the ambulance transport service called in at a massive site which called itself a retirement village. It had a bowling green, a lake with seats to sit outdoors etc...but the person who was picked up for his hospital visit at a spinal unit(he was in a wheelchair)he had a minder and she explained to another passenger that this place had...a block of apartments people could buy and live in, a nursing home, a residential home and another block where you live your life but have helpers coming in.

There is no way an ordinary member of the public could live there unless they have special rates and as many homes run by local authorities are continually being closed down and some private care homes are struggling too, social care is in a bit of mess to put it mildly.

And this story has now broken on the charity site run by the MacMillan Nurses which I think is a disgrace and as far as I know has not been reported much in the media. Who in their right mind would prefer to have cancer and all the treatment it entails to get benefits and possibly face death to take benefits and when you have a record of your treatment, a Dr and a Consultant to speak up for you(Oh, I forgot)many assessments these days will not allow you to submit information from your medical records and those treating you...

It ties in with an anecdote I may have mentioned before where I was in a supermarket and two women were talking and one was absolutely livid because her daughter is being treated for cancer, is still ill, not in remission and is being chased after to ask why she was not working.

Benefit Checks On People Having Chemotherapy

Oh Dear...

2011-11-25T11:00:00.008Z

Sadly, the lady who lives two doors down from us has been taken away to hospital in an ambulance.

Earlier in the year she'd spent approx six weeks there but we had no idea.

Then a few weeks before Mum was diagnosed, she was taken into hospital and spent roughly the same amount of time there. To cut the story short she had never really been ill all her life or one for being seen by Doctors.

We believe she has something similar to Mum and has had a few operations and was unable to eat.

She answered the door when I was going to tell tell her husband how Mum was doing, she really looked weak and vulnerable but said that her consultant reckoned it would take around 6 months for her to make a full recovery.

Today, I looked out of our window and the ambulance was back...and Mum thinks it took our neighbour away. Its a worry and I am sure that they must be going through all the worry and concern that we are feeling.

Seeing another person going through such a worrying time does bring your own situation home.

We've just lost another neighbour but I don't think that is connected to anything connected to what anything associated with this disease.

He'd had a stroke a few years ago and he wasn't doing so well. I mentioned him in an earlier post.

Meantime, Mum has had a letter today confirming the follow up appointment to her Radio Therapy treatment and it will happen on January 4, 2012 just before lunchtime at a local satellite surgery the Oncologist holds. I so hope its good news...

I saw Mum's tumour today...it is amazing how much smaller it is(it also makes me realise how large it originally was and a nuisance)it has improved greatly and that pleases me.

I hope that it continues to shrink but I assume the effect will slow down in the second and third week.

I don't know if it will continue after that or if it will start to regrow immediately so when the Oncologist sees it early January, will it still look as good. Its unknown territory.

For now we must be thankful how things have gone and take it one day at a time. As things stand still more to be positive about.

I should have mentioned this earlier...this is a very positive story...I don't know widespread it was reported in the media. In Mum's case this looks good but then again the 17 fold survival rate of 9 years can only be a generalisation and people surviving that long instead of months may be affected by other health matters, age and whether you are getting a combination of treatments rather than just one. Still good though...

We Haven't Eaten Much Today...

2011-11-24T20:31:00.003Z

But I tend to believe sometimes eating little but often is a good way of going on rather than sitting down to big meals. And I have been nibbling all day.

Mum's still on the Complan and earlier I took some celery, an onion and some carrots blitzed them in the blender with some water containing vegetable stock and made my own soup so that should be good for us. I have chopped up some eggs and tomatoes finely so its more like a paste and I've spread that on some wholemeal bread buns.

So hopefully Mum will have some of them later.

Perhaps, Mum may decide to have some porridge or cereal later.

Any change in Mum's health? I haven't looked at the tumour today though I have cared for Mum and kept her clean and tidy but the only real visible effect of the Radio Therapy is a reddening of the skin around Mum's bottom and the surrounding area that I suppose looks a bit like sunburn so I just make certain that there is plenty of cream in case it is sore. So again...so far, so good.

An Observation...Which I Hope Is Good News...

2011-11-23T17:31:00.001Z

I take heart from two visits earlier today...

Both the Carer and District Nurse have not seen Mum for approx 14-17 days(before Mum's treatment)and both agree that the tumour has reduced in size and it is much less sore than before.

I guess if anyone will notice an improvement it is professionals who see and deal with such matters daily and having not seen it for awhile. Lets hope the treatment continues to make further changes over the coming weeks.

Bit Of A Cheat...

2011-11-21T15:05:00.005Z

I did a clear out of my cupboards and pantry the other day...throwing out items past their sell by dates and found I have more soup than I thought so in reality I can avoid buying any for awhile.

For many months I have thought I should make my own soup(It would be no more expensive)and would have fresh ingredients and probably have more goodness in them. I have some great books with recipes but you can virtually put anything you wish into the mix.

Today, I had some fresh cauliflower and broccoli and I knew there was no way it was going to be used in a meal and I was reluctant to waste it. So I whizzed it up in my smoothie machine with some vegetable stock, brought it up to the boil and served it up. It did not taste bad, I know that it has all the goodness of the vegetables too.

And I hope all the fibre too. I might've left it chunky but by liquidising I know Mum can manage it better. I was also able to make at least double the amount of soup you purchase in a supermarket for the price.

RIP Eric...

2011-11-21T14:47:00.006Z

Most of the people who live around here stay put for years and years. So many of us only move out in a box.

Around the time Mum was diagnosed, I found out from an acquaintance that three people in my street had passed away in recently, we knew them reasonably well but I guess as we spend a lot of time indoors and do not buy a newspaper you don't always find out until some time afterwards often by chance.

Just like earlier posts about things happening in three's, perhaps its just coincidence but I can remember a similar situation a few years ago where the out of the block of four houses we face onto three people passed away within a short time of each other.

Sadly, we have lost another person...a neighbour. He wished Mum well when he found out about her and now its him.

Decades ago Dad knew Eric's father in law and to earn extra money he drove a taxi for him. Times were difficult so any extra cash was welcome.

All have left this world...the mother in law, Eric's wife, many years ago. Eric was not really old by today's standards(only 68)

Back then when all was well they lived next door to each other in two semi-detached houses and believe they knocked the two properties into one. In time I think the houses were turned back into two. And since then the other house has been been home to at least three families.

All this brings it home as to how mortal we are and how precious each day is.

Ironically, ten days ago a neighbour told me that Eric was so ill and unlikely to get back into his home...what neither of us knew was that he had died the night before so that statement could not have been truer.

Bye Eric...

In The Middle Of The Night...

2011-11-20T14:15:00.006Z

I sometimes make Mum a drink. Tea, coffee, milk, fruit juice or water is usually easy as I have all that I need upstairs but sometimes I have to nip downstairs.

Whatever can go wrong will and last night seemed to be one of those nights. At 3am I managed to knock over a bottle of lemon juice and managed to clean up the glass and liquid and just started to pop some items I had found had passed their sell by date into some carrier bags to put in the wheelie bin later.

I of course managed to pick one up with a big hole in the bottom and placed a big glass jar of Dolmino tomato sauce for use in cooking and it smashed on the floor and I had to start all over again cleaning up glass and a horrible gooey mess. I can think of better things to be doing at that hour.

They say things happen in three's I hope that is not the case and that's the last accident for awhile.

(Of course three accidents did happen...)I'd forgotten that some hours earlier I had spilt some dry spaghetti over the kitchen floor. I will have to vacuum some of that up later as I keep trailing bits of spaghetti everywhere.

Somewhere On A Hard Drive...

2011-11-19T06:00:00.004Z

I have an image of Tony Blair...ex British Prime Minister. I was originally testing the new(my first)digital camera I had invested in. He turned and gave me the thumbs up.

I think I was interested more as it was a news event happening only streets away from where I live more than the fact it was him. I had images of all the satellite broadcasting trucks from major news broadcasters ready to relay the election results to the nation and the world.

At the time I did not have a blog and unless I search out those images by connecting the old hard drives and searching they will never be seen.

I'm not sure these days unless I happened to be there by chance and was wanting to put images on here I could be bothered to stand around to try and see any public figure, celebrity or politician.

Without saying whether I liked Blair or which political party I voted for or would in the future. I tend to be very unbiased how I view many events these days and I will say if I think any party can put up a very good argument for why their policies are correct.

However, I do think from the things I heard said over the years even though he was voted in as the local MP and this meant that he could continue as our Prime Minister, many voters around here felt because he was working the world stage and having a large public persona, instead of it benefiting the area, it did the opposite because he could not give enough time to local matters. It might be a perception that is wrong and there might be some statistics that show he did give of his time generously.

I will say that when he announced he was stepping down as Prime Minster with a year still remaining before a general election had to be called I thought that he should've spent that last year showing how grateful he was to those who elected him into power.

Instead he quit British politics altogether and started performing on the world stage. Being a consultant to companies, doing lecture tours and taking on other commitments such as a kind of ambassador to try and help bring peace to the Middle East(a wonderful idea if it could be pulled off)but experts and ordinary people around the world have their views on his suitability for holding such a post. That's not for me to say.

What has also been noticed by many is how "Rich" he is and what he has managed to amass in his personal finances.

It could argued that we all have the right to use whatever we can to secure a future where we are secure financially and so he is no different so is such criticism justified...I am unsure.

My one observation and I always thought it(again rightly or wrongly)he always made an appearance at a local working man's club in the town that bore the name of his constituency and he would usually launch his campaign and go there to celebrate when successful.

And its not a case of being a snob or feeling that people are beneath me, but you could tell that under normal circumstances he would not normally mix with those who frequented this place.

It is a bit like the old joke where politicians used to like being seen kissing and holding a baby for the photo to be published in a newspaper.

What provoked the above was that the radio they look back at events that happened years ago on this day and another politician was mentioned who was a British Prime Minister years ago, Harold Wilson and I have a vague memory(I don't know if it was at a time of election)or just a normal time but we(my parents and I)must have been having a picnic or had stopped on a grass verge somewhere with others and someone informed us that he was coming by soon and I assume we all(like idiots)stood and watched his motorcade go past.

I wouldn't do that now. I cannot remember whether we all waved or stood. I cannot remember if we could see him and whether he acknowledged us in some way.

The same thing happened in Bournemouth years ago when I was on holiday. Word got around that the Queen would be coming along the road on the seafront under the cliffs(you cannot do that now)so people lined the route waiting for ages and when the motorcade swept by, it was so quick I don't think many actually saw her, it was a disappointment for many and I am sure many probably felt like saying "Was that it?"

Day Five And We've Survived The Experience...

2011-11-18T13:55:00.010Z

For the first time today I discovered that Mum's cancer is affecting the Rectum and...when I mentioned we had thought she had bowel cancer when getting a kind of last minute information talk with the Radio Therapy guy, he said that such cancer is border line to bowel cancer. I think this is a medical term that is used as an alternative for colon cancer. I'm still learning/finding out the situation.

They are happy with how the treatment has gone and seem very positive but the one with all the good or bad news and how things will turn out is the Oncologist. Mum has a follow up appointment with him some time in the next 4-6 weeks, the letter will drop on the mat at a future date. No good second guessing what he'll say. As far as we know it is only the tumour we see.

The same person cannot put words in the Dr's mouth(I would not expect him to)but the suggestion was there that if the Oconologist decided to, they could do more sessions, chemo(if he thought Mum could take it)that may be too much but more radio therapy is possible. It all depends on his knowledge and what he says are our best options and if we can convince him to continue.

Interestingly enough Mum is willing to do more treatment if offered and that proves the treatment did not trouble her too much(but she is only willing if she goes by taxi or perhaps if there is a next time the hotel might seem more appealing)and not the way we have this week. I think Mum disliked most that you felt every bump in the road and the doors were continually slamed shut. But it shows that there is some fighting spirit there.

Day Four...

2011-11-17T13:51:00.000Z

We did not see the Oncologist as we thought we were going to but as I'd raised concerns about Mum's pain killers perhaps not offering pain relief as they should we were given a kind of meeting with someone who had access to Mum's notes and could advise...

They are happy with Mum and how the treatment is going and think they can continue to control it.

If the pain killers stop working or we need something stronger we should take it up with the District Nurse service(or the Oncologist when he does call her back in to revue how the treatment has/is going)
And we do not need to change Mum's diet and can carry on giving all the different variety of good foods that we can think of.

So again more positives than negatives for now.

The last treatment is tomorrow.

Three Down And Two To Go...

2011-11-16T15:07:00.002Z

even less to report today...

The session seemed quicker, perhaps Mum's better at staying still.

It seems the Oncologist will see Mum tomorrow(We didn't know that was happening)to revue the progress of how treatment is proceeding etc...and maybe this is the time we can raise concerns we have.

Mum still appears not to be having any of the side effects they said was possible. I still believe that I can see changes happening and this is only day three.

The treatment lasted maybe five minutes, travel there and back plus waiting times for transport came out at five hours twenty minutes...mainly due to other patients appointments being delayed. One they waited thirty minutes and then they were saying another thirty minutes were needed so the driver decided to get us home(and another three people)

Never mind...this is the Human side of the hospital and the staff have been very friendly and(to use an old fashioned term)very nice!

Second Session Of Radio Therapy Completed...

2011-11-15T13:33:00.008Z

Mum had a restless night, I stayed awake worried that I'd oversleep and miss the mini-bus to take us to Mum's hospital appointment.

I was up at 6am and started to get Mum ready by 7am.

Mum was cleaned and dressed and I managed to have her eat some porridge and have a cup of tea.

Getting her downstairs was another matter, she had decided she still wasn't going to go.

At the top of stairs Mum was about ready to descend I happened to look away and try and get something ready and when I looked back...she'd disappeared and I could see Mum's hand moving along the bannister that runs along the landing and she was obviously going back to her bedroom. That was both funny but frustrating especially working against the clock.

So I had to(and I'm not proud to say this)physically coerce her to turn around and come downstairs.

Then after approx 15 minutes the bus arrived and again both the ambulance driver had myself had to persuade her to go out the front door.

Once at the hospital her appointment was around 10.50am but she was seen virtually straight away at around 10.30am.

We were ready to go home but due to technical difficulties and delays the other people we shared our bus with were late in being seen so we had to add an extra 30+ minutes before we could start our journey.

So at present Mum is once again saying she won't go tomorrow but I have tried to have her understand how important the treatment is, I got the radiographer to explain again today that she will be more comfortable if she completes the treatment(and she said it in a nice way to Mum)the procedure was much quicker today.

Mum was so tired that she fell asleep whilst they were doing or preparing the treatment.

Mum really hates the journey. Tomorrow as you feel every bump in the road and she's a bit sore I'll see if a cushion helps.

Now, I may be imagining it(and I was told we probably would not see any changes for 3 weeks)but I think that I can...As always time will tell.

I am about to prepare some soup(winter broth soup)but liquidise it so its easier to eat but has the goodness...last evening I did tomato and butter bean soup the same way and she also had some scrambled egg.

And I believe she is talking of having a reasonable meal later so for now the Radio Therapy has not affected her appetite and apart from being a little sore so far other side effects have not kicked in.

More positives than negatives so far...I was so busy seeing to Mum this morning I didn't manage to eat anything myself...

The First Session Is Over...

2011-11-14T20:21:00.005Z

The first visit for the planning of what they'll do and RT is over.

The staff made what could be a frightening experience exactly the opposite. Everyone was friendly. There was quite a bit of waiting but what they did went well. Mum's plan was arranged by the Oncologist that we saw a few weeks ago and arranged that I could accompany her there and back to the hospital.

I was in on all the talks with Mum and at the end of the first session I was allowed into the room where all the equipment was. As I was present they took some swabs(on little cotton bud sticks)from Mum's nose and I think her nether regions(and I think I heard the term MRSI)so I hope they don't show up anything nasty...It was the end of the session and the transport was waiting so I didn't ask what that was for...

Perhaps I will tomorrow...

Update:Its some kind of check to see if people being treated are carrying those infections that sometimes cause problems for pateints in hospital after they've had a stay/operation.

Whilst at the hospital I found some publications from the charity "MacMillan Nurses" and though cancer isn't a fun subject they are written in an informative, unfrightening way and cover so many different aspects of what it is, what care is available but aspects I would never have thought of.

I have seen that RT can and does often kill cancer or it can if successful at reducing the size of a tumour surgery might be considered but such courses last 5-8 weeks. But as Mum is only being given 5 sessions it is obviously beeing done to improve Mum's life and make her comfortable but as a pallative measure again not to get rid of it but again if Mum proves to be not so weak, could that be considered?

Mum is talking of not going tomorrow but I am sure that she will...Its the early hour we have to go and...Mum doesn't enjoy the journey there and back.

At least tonight the transport to get us home was waiting for us immediately.

Tomorrow we have to be there for 10.30am but the last three days we have to be there for 9.35am(I've still suggested a partial stay over at that hotel...)Possibly on the earliest days of the treatment, I think that she may still say no but the suggestion actually came from Mum herself.

It does mean we'll probably be leaving here even earlier 7.30am-8am. But maybe if Mum is home quite soon afterwards she has ages to prepare/rest until the next session. I think it will be quicker from now on.

The last day of two I have been liquidising vegetable soups so Mum gets the goodness but doesn't have problems eating the chunks of vegetables many soups have...

And get this Mum said that she would never ever eat porridge(probably remembering how it was made in the days when she was a child...probably with water and very thick...but I persuaded her to try some of the new kinds available and she enjoyed it and has asked for another so maybe I could think of this for breakfast before she has her next treatment.

The Only Sure Thing We Know About Life Is...

2011-11-13T14:04:00.007Z

Death and Taxes. I believe that's the saying. Well, taxes I could care less about except in an ideal world they are used to improve the lives of the sick and vulnerable.

But we do know that we all will die. Just that hopefully no one tells you when its likely or that you have live with the knowledge your time is limited. Most have an approx age in mind because officially an average age is statistically released every so often.

Certain events in life make you realise your mortality. Such as if you work and you reach retirement age. I believe for many years up on retiring it was more or less agreed you would live between five and ten years. That also pleased the Governments because they are not paying out on expensive medical procedures on the NHS and not paying state pension and other benefits indefinitely.

Its ok "Rich" people living longer but not the mass population.

But life is not guaranteed and all kinds of spanners will and do get thrown in the works for many of us and it will see many of us having all kinds of worries from not having enough money to live on, losing jobs, illnesses and so on.

I don't know which is worse...I used to think how do you accept being told that you cannot be cured or have a condition stabilised but I almost was faced with that situation 14 years ago and I cannot say what the future holds, my time on this earth may be cut short or I may face lots of medical procedures where I find myself wondering if I can be bothered with the hassle. Is my life that precious?

If I only have myself to think of and no one else is worried whether I am here am I less likely to fight to survive?

And here's another thought...is it worse for the person who is told they are going to die or if you have others who love you being left behind and still living without you in their lives. Do you ever get over the loss of a loved one? Of course your life has been enriched having that person in your life and that's why it feels less so without them. So perhaps it is easier for the person who is told such news.

I have heard it said many times it is worse for the relatives watching than the person themselves.

Luckily the Human mind can for most of the time put such morbid thoughts on the back burner and almost pretend it isn't going to happen. We all hope we'll die peacefully in our sleep or it will happen so quickly we'll not have time to think about it!

But only God knows what it feels like having loved ones if you are fortunate to have them sitting around the bed waiting for you to take your last breath and you knowing its coming.

In my own case unless I meet someone and have a relationship late in life, unless I have accident...I will die alone in my home and be discovered by someone who might wonder why the curtains are drawn and I haven't been seen or been paying my rent, possibly in hospital or in a residential home with people who are not loved ones and are being paid to do a job but I'll still die alone as we all will.

Where did this morbid blog entry come from? I don't know but we all think such thoughts at some time in our lives and you realise you are not immortal and I have lost my Father to Lung cancer and now Mum is living with the disease but as I say hopefully they can be dismissed and other thoughts block them out.

They say one in three people will get cancer at some point in their lives so if we don't get it ourselves we will know someone with it. Great statistics to have to live with...

To lighten this post I remember a joke the comedian Dave Allen used to tell(I'm sure others have)

He had a routine about retirement and he used to say how you worked by the clock or clocked into work each day and your live is governed by time and what do they give you when you retire as a gift?

"A Bloody Clock!"

Now We're Starting To Find Out What...

2011-11-12T19:57:00.005Z

Radio Therapy may entail...

Mum might find that she'll be sore and it may feel a bit like a bad case of sunburn...of course it might not!

It has been suggested that we may have to change how we clean Mum and change the creams we use and possibly use plain water when washing so avoiding any soap product making a sensitive area sore.

I have been talking to others in a similar situation and warm not hot baths have been mentioned, someone said splashing with water in a similar way like a bidet is a good idea and the use of unperfumed aqueous cream, I'd never even heard of it but a quick search shows that it exists and its not particularly expensive. But there are as many negative stories about it as there seems to be good. Even the nationwide retailer Boots makes and sells its own version.

If Mum loses her appetite it has been suggested that our Dr could prescribe some supplements that will give Mum nourishment and they could be used in addition to the complan I have been giving her between meals etc...

A few people have been surprised that we have not been offered these already by the District Nurses and/or the Dr. I did know know that they were available so I would not have thought to have asked for them.

I only found out through a charitable website that deals with bowel cancer and someone who was waiting with us at the hospital last Monday when we had the fiasco of going there and Mum being injured and having the treatment cancelled and postponed and we were waiting almost three hours for transport to get home again.

It would appear that many of these things I am being told of are mentioned to others when they are being given Radio Therapy so I hope they will do the same for us when we go for our first(rescheduled)session on Monday.

Anecdotal Stories...

2011-11-10T17:46:00.010Z

Most of the stories we relate can only be anecdotal unless you can show documentary proof or you are able to record sound or take a photo/video of something.

Often when someone says that they know of someone who is getting help from the Government in benefits but they are working or doing something that means that they are not entitled to it is very suspect in my view.

There are many tales of genuine people not going out because they are afraid of the reaction they'll get from some or are afraid to do a little bit of pottering about in their gardens in case someone says if you can manage to do that, you should be working.

People don't always look ill, people have conditions that fluctuate. There are so many reasons why someone is unable to hold down a job. Unless you are in that person's shoes you don't know.

I have said many times that I can see from all sides...people who work hard and feel they are being shafted, for many being in work isn't easy.

They are unsure that their jobs are safe and will be there one week to the next, they are unable to ask for a wage rise or might be told because times are tough they might have to take a wage freeze or a cut, many jobs pay the minimum wage(a nice idea)but unless you are just starting out, that is not a living wage to run a home or bring up a family on...you might just about manage if you are still living at home with your parents and they are not taking too much off you for bed and board.

The fact is that many jobs mean that people in work still have to try and claim benefits form the Government(perhaps tax credits, housing benefit etc...)the problem is that few jobs pay a living wage. There is something wrong about that.

Unfortunately, I don't have an answer to the problem. I'm not sure those in charge have either looking at the Euro currency fiasco happening in Europe(and how Ireland and Greece have had ask for help to bail them out)and a number of other countries may have to in the future. And we haven't even touched on the global economic problems of recent years which has seen bankers become hated by so many.

For many, the help given to the sick and vulnerable and those who are looking for work isn't great either and with the current economic climate it has given our coalition government the excuse to reduce or cut what they pay but again stories in the press and broadcasting media are of fiddling and scroungers(which is minuscule in the great scheme of things)it means many are all tarred with the same brush.

The only possible way a family not working might be better off is if they are all over the age of 16 and share the money between a whole household but if you are the only person claiming and happen to be single or have a partner and have children...it will be a struggle.

Again, I'm not sure I have an answer except the vulnerable should not be vilified and the problem still lies within the business community and yes, with those who work in the stock exchange, the investors, the bankers and so on...

But again the following two stories should worry all of us...those of us who are in similar situations now or could be through no fault of our own in the future.

And when, as will happen, some say these tales are anecdotal...they are no more so than those tales put around by those critical of the vulnerable in society being undeserving but its so hard for the vulnerable to be heard.

As bad as our system is or rather is becoming over the next few years we then have to say at least some help is available here...in many countries you really would be left on your own and not receive anything.

Married Couple Commit Suicide

Fit For Work

Another Day And...

2011-11-10T11:13:00.004Z

Mum had restless night which is distressing for me but is now resting peacefully.

Mum has had her first proper bath in two years using a chair that lowers her into the bath(the carer looked after her)she has enjoyed it and it has relaxed her.

After her sleep hopefully Mum will have a small bowl of cereal with added banana, strawberries, blueberries and whole milk. Followed by wholemeal toast and manuka honey.

I think that is a good result...

I purchased a mini chopper yesterday(originally I had thought of slightly more powerful and expensive one but went with the supermarkets own brand, it was on offer and half the price)

I chopped up a salad and enjoyed it that way. I think being chopped up very fine, I ate more than when you lay a salad out on a plate and as Mum has difficulty eating some foods(I tried a spoonful to see if she could manage it...)she could do so now, I may be able to get her to eat foods like celery, cucumber, tomatoes etc...which can be a bit hard to chew. And she can still get the goodness out them.

If it works, fine but if it doesn't what have we lost?

Have You Seen My Chopper?

2011-11-09T23:04:00.003Z

A few days ago I nearly purchased a Kenwood Mini-chopper. Approx £20 but decided against it.

Today in the same supermarket they had their own brand on sale(worth £15)selling at £10. I bought it. The speed is less than the other one and a bit smaller(barely)but big enough for me/us.

I actually chopped up all the ingredients for my salad and they were really tiny pieces and all mixed into one but you know what...I liked it that way.

I think I ate more than I might've when its all laid out on a plate.

Mum's not a salad eater but she found that presented this way she was able to eat so another day I may try her with a sandwich or a little portion in a bowl and she'll get all the goodness the vegetables contain...items like celery can be too hard usually.

This could be a very useful gadget...

Diet And Cancer...

2011-11-09T17:54:00.003Z

Well of course you'll do all that you can to try and save your loved one's.

Mum has never had what I would call a bad diet. She rarely drinks alcohol, she never smoked. She eats very little red meat. We always ate a varied diet of fruit and vegetables. I would not say she is a big sweet eater either. Nor soft drinks.

But naturally, this cancer Mum finds herself with has made me more aware of Mum's diet so I am seeing that she is drinking Complan with whole organic milk to build her up and she likes them so much she asks for them instead of tea. They are full of vitamins and minerals and can act as a complete meal and give nutrition.

Mum likes Special K with banana and strawberries. I have purchased some blueberries and decided if Mum is unable to eat these as normal I can put them in a smoothie machine. She like soups, most vegetables. Tomatoes and tomato juice(But I have bought some supplements that have that ingredient that they say is good in tomatoes and its the same as eating 6 large tomatoes)Garlic and so on...So I am just upping how much of these and other foods I can get into Mum's system in the hope it may halt, reverse or slow down the effect.

There is a book available written by someone who had cancer and held it at bay and managed another 20 years of life by eating certain foods. Everything to gain and nothing to lose.

Someone suggested My Mum would not live to 105, I'm not expecting that but if it improves her well being/quality of life, it has to be worth it!

All Change!

2011-11-09T10:57:00.002Z

Well, I was told yesterday that Mum is rescheduled for treatment Tues-Fri and the following Mon at 10.30am(with next Monday to arrange everything at 2pm)

Now we have a letter saying Mum's first session of Radio Therapy will be on Monday an hour after the meeting to arrange things. So I am now guessing this means they'll drop the odd session pencilled in for that following Monday.

They keep changing things, it takes some keeping on top of it all.

Par for the course I suspect...

That Toe...

2011-11-08T17:11:00.004Z

The dressing came off and guess what...we know that it is fractured but as has been said many times, out of all of the body, toes are fractured and broken all the time and most of time we never realise. It is the part of the body gets broken the most. The medical professions tends not to bother considering doing anything except letting time heal matters.

It did look nasty yesterday but with all the blood clear, the nail is not looking as though it will be lost and it looks more or less as it always has.

It probably would've looked much better yesterday if only it had been cleaned up.

When the bandage came off today before I saw it I said to Mum I'll redress it with items in my first aid cupboard but looking, I think its going to be ok if we let the air get at it. I think that I could dress it better than they did at the hospital if I have to.

The blood just seems to have disappeared. If it had been cleaned first maybe we'd have been away quicker.

I suppose they'd say better to be safe than sorry!

Accidents Do Happen But Today Was A Total Disaster...

2011-11-07T20:48:00.014Z

Mum and myself were picked up around lunchtime and dropped outside the Radio Therapy building, you could not get much closer...the driver walked Mum in and she had a slow motion fall but so slow he caught her, when she was sat in a wheel chair waiting her turn I discovered Mum's big toe on the right foot was bleeding badly.

We spent the next five and quarter hours in A&E and they took so long over the treatment even though the Radio Therapy department said they were willing for us to go back for our appointment, in the end they cancelled so we had no contact with that department and all Mum got out of it was a fractured toe.

And due to various mix ups with transport to get us home and various members of staff assuring us that a car or ambulance Mini-bus was ordered and was coming it was obvious that most of the time no transport had been ordered. And therefore we sat in a waiting room for two and a quarter hours waiting for some way to get home.

Many of the staff were busy(I know that)and most were polite and caring in attitude but much of the time it was as if the right hand did not know what the left hand was doing.

An example, I was given a white piece of paper for an x-ray to be taken of Mum's toe. She was parked next to the room where x-rays are done. I assumed that I had to wait my turn and hand the radiographer the piece of paper with Mum's details...

I could've still been waiting it turned out I had to walk along a corridor to another reception desk and give them the piece of paper...No one told me.

Even up to 4.15pm the Radio Therapy dept was ready to see Mum and then they cancelled.

Now what if Mum had been on her own?

Knowing Mum was there to be seen in a hospital department and had been specially travelled in I am sure they could have fast tracked Mum through the system.

I was not impressed and Mum was getting quite worked up/frustrated in the end.

I do hope tomorrow works out better.

Update:Tuesday 08 November 2011Unfortunately...I thought Mum might be in hospital for other reasons this morning... a restless night perhaps due to yesterday...I found her upside down in bed three times and...she fell out of bed twice!!!

The last sounded nasty but I had the foresight of putting a large, thick old duvet(or maybe they are called Continental quilts)down the side of the bed as I used to for such possible falls and this morning she is moving ok and seems to have suffered no damage.

Its too big to attempt to get in the washer(or wash by hand)and really could do with a good wash but if it does the job of keeping her safe, I'll use it.

I may buy another new one yet...crazily just for this use. Not for putting on the bed! We have some light weight one's that work and keep us warm even in winter and they probably could go in a washer because they are thinner(the tog rating is much less)but these are really padded.

At present the important problem(the radio therapy)seems to have taken less of priority. We don't need all the extra stress on top.

Must get up in an hour or two and start all over again...but this time Mum will hopefully be seen as planned and get her treatment tomorrow. They'll have to try and fit in the missing day from yesterday and add it onto today. Or move the appointments back a day so Mum's RT finishes Wednesday next week instead of Tuesday.

Today was supposed to be a case of checking details taking yesterday to see they match what they have programmed into the machine so treatment can start on Wednesday. And Mum should be marked up already.

Update:(Same Day)Now, it appears all Mum's treatment has been cancelled...rearranged to start again from Monday(hope the delay of week doesn't change things too much to the success of the treatment)

So yesterday was a wasted day. All she did was injure herself and end up cold and confused because of the waiting. Approx 7 hours and no treatment and what was done for her toe could've been sorted in an hour.

So instead of the nice time of 2pm Mum now is being seen at 10.30am each day Tuesday-Friday and a final session the following Monday so we'll be leaving here approx 8.30am each day.

Except for another of the appointments like she missed yesterday on the Monday which is at 2pm.

I keep being told that Mum is weak but she must have some strength somewhere to cope with the kind of day she had to endure yesterday at the hospital and through the night.

Not expecting any of the above Mum wasn't hungry before goingto the hospital so thought she eat when she came home...she survived this day on half a slice of toast a cup of tea...thinking about it...I had the same(well, I had a slice of toast)

I'm still trying to decide why the rest of Mum's treatment for this week has been cancelled and rescheduled, she was sort of prepared for it and in the mood but will she be next week?

I may say a lot on my blog but I rarely kick up a fuss and take the least line of resistance. Others go in blazing and demanding this that and the other. They are not liked but do they get what they want or are we who say very little but are liked and seemly ignored the silly one's?

I mean 3 hours to get to the point where they said "You have a fracture" and dressed the wound. And nearly 3 hours for transport to get home. Forgive me if I have said this already but why could Mum not be fast tracked through the system as she had travelled especially for treatment and why did they not clean the wound, when the blood was not there any longer it looked as different again.

I did go back and ask what was happening a couple of times but you feel awkward sometimes doing so, you almost feel apologetic and you are getting in the way.

Its a bit like the stories you hear where someone has a horrible meal and when the waiter asks if everything is fine, everyone says that it is.

What a carry on...

A Day Where Nothing Much Is Happening...

2011-11-05T15:23:00.004Z

And that's ok with me...

Next week will be quite busy. It may work out much better than we fear. At this minute its hard to believe we'll be starting 7 days of visiting one of the major hospitals in the area or Europe. Their website suggests that they have just spent £35million on their facilities for treating cancer.

Further investigation suggests that the Oncologist Mum saw was appointed in 1999 and started his training in 1984 so I guess though he looked very young he is nearer 45 years of age so I guess that means he has quite a lot of experience behind him.

And the person we believed to be the main consultant is an expert at surgery at the local NHS hospital and two private hospitals in the area, the main person is who Mum saw.

So here's hoping that all goes well and we have some success.

The most exciting thing going on today is me doing more washing and keeping on top of it all. And being frugal I have a couple of sheets that supposedly stop coloured items spoiling white garments if you do a mixed wash. They do shrink in size but you know as they still continue to work, rather than getting a new one, I have been reusing them.

Whilst I am able I treated ourselves to a new Christmas CD issued by Michael Bublé when shopping yesterday. I had already downloaded some Christmas songs by Michael last Christmas so I thought that this new album might have tracks I already own and two are the same but sixteen are new so it was still a good buy(The more music you have sometimes makes it difficult when buying a CD to remember what you already have)

And naturally being issued by Frank Sinatra's record label "Reprise" and with the kind of production values associated with Bublé and Sinatra the quality of sound arrangements are superb.

So even though new Christmas songs seem few at least old favourites still sound great. Even though you have heard them many times over the years.