Random Jottings Of Gildersleeve

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Location: United Kingdom

Perhaps you'll learn more about me as you read my blog. For anyone who translates my blog using the translator facility, don't forget if you wish to read the comments in your own language to click on the title of the post down the left hand side otherwise they will remain in english. Also I assume that the translation is accurate but I don't know, so please allow for errors.

Monday, October 31, 2011

Last Night...

Mum said in passing when she decided to talk about her illness(she tends to say little and accept the situation)she feels the best solution is to cut it out and in some respects she feels she is not getting any treatment as such.

Now, if she is so weak does that mean if Mum had an accident "All" treatment that would require an operation is out?

As I said earlier, if Mum's Radio Therapy is successful to some extent and the side effects are few I wonder if they could reconsider and decide to operate? Especially, if it has reduced so surgery is less intrusive and could be dealt with to avoid it spreading.

There are still many, many questions.

Perhaps, we'll manage to sort out something about the travel arrangements today when I talk to my Social Worker. Perhaps she can come up with some ideas...

Mum had her blood test yesterday so I am awaiting the phone call that may say she needs a transfusion again(hopefully not)but if it works we have no problem with that and it will be quicker this time because Mum's been there before.

Did a little shopping today and still managed to forget a couple of items. Silly thing like...some soap flakes for washing delicate items which as I came back with detergents it seems crazy that I forgot a washing powder. Wasn't helped by forgetting my shopping list.

For now though I don't go mad with shopping, it is still a case of I can buy whatever I wish without being too thrifty. But I was just thinking if I was alone how careful I would have to be and how little I can purchase in the future. I really will have to choose carefully and in many cases do without things I now enjoy.

The older I become, the poorer I know I am going to be. People tell me I will be fine, I still think that I will be struggling.

Sunday, October 30, 2011

I Guess What Hurts...

Is that Mum appears to have a slow growing cancer so in one way that's a positive especially if she may live as long as she might've or die of natural causes not associated with cancer.

So far it would appear to be in only one place and has not spread as yet so how annoying that the experts say because of other reasons chemo is out and so is surgery so they leave it to grow and possibly spread.

I so hope this radio therapy works well(as I appreciate any person who is in a similar situation)and shrinks it as small as possible. We'll always wonder had it been treated/seen sooner when it was smaller this treatment might've worked even better and killed it or made it really small but you cannot change things.

We're also of the mind that ignorance is bliss and Mum may live as long as she was going to but not knowing you have cancer means that is not there in the background. So if Mum had not mentioned to the Dr who called we'd be none the wiser. Then again, hopefully she will be looked after and they'll keep an eye on things. I suspect it probably means we will spend more time in hospitals than we once would've.

I have found a hotel situated opposite the hospital(how near is that?)and it could save us the daily ride, its not cheap except that you avoid travelling...but Mum still thinks she'd like to come home.

I cannot arrange anything until I have dates from the hospital.

I Will Use The Washer...

especially when I have quite a few items but today I had one sheet that needed washing and it seemed crazy putting the washer on for one item. Then again the instructions given with the washer mentions some stains that are difficult to get rid of and it mentions pre-soaking first.

So I quickly(and I do mean quickly)popped the sheet into a small amount of washing powder in the bath(the central heating was on so the water was very hot)it was clean in perhaps 30 seconds to a minute. Popped it into the washer on a rinse cycle and the detergent was rinsed out and the sheet was spun almost dry, 10 minutes in the tumble drier...its all done. Hanging it on the washing line was out as it quite a damp rainy day.

Therefore the washer hasn't been on as long as it usual, saving power and time...So once in a while this may be a way to save me still doing hand washes but equally it will also save time and electricity because the washer does not need to go through the whole cycle of a wash, rinse and spin...

Saturday, October 29, 2011

A Rather Frightening Start To The Day...

Mum had a bleed and as always a little blood goes a long way and looks quite frightening on bedsheets and carpets. Especially when it still seems like the middle of the night(6am)and outside it is dark and quiet.

Thankfully, it stopped quite quickly, Mum cleaned up nicely and I had everything in the washer and dried not much after an hour.

But for various reasons I was still looking after Mum for most of the morning but all in all its not turned out so bad.

I think Mum is now quite positive about her radio therapy treatment(even though she may feel really bad with the side effects)but she may sail through it for all we know. If she does, perhaps they'll change their opinion about whether she could stand an operation.

I still take some comfort that the scan results seemed better than we feared(fluid on a lung)a small mark on the liver that may've been there years and could be harmless but I assume they'll keep an eye on.

I am still thinking of staying close to the hospital so our travel costs and times are reduced and explain to the hotel that we may need a few extra services and we'll pay any possible damage caused by Mum's treatment. I'd rather pay for a room, meals, a tv, central heating etc...than a basic ride to and from hospital.

Too late when Mum had her hip operation a few years ago I thought of doing this as there was a guest house virtually a stone's throw from the hospital.

My next best option would be if we can find a volunteer driving service(They usually charge something like 10p a mile)So £5 a day is better than around £50 for a taxi.

Then again if Mum wants to use a taxi and pay that amount and be in her own home and bed I'll do it!

Well, for all the above Mum has managed to have a reasonable start to the day food wise and that always pleases me...two complans(made with whole milk from the Channel Islands)Special K with the same milk and strawberry and banana sliced followed by wholemeal toast with Manuka honey. And two mugs of tea...

And I believe Mum is having some cream of tomato soup and haddock, potatoes and vegetables(probably Curly Kale)later for the evening meal and I hope she may have something to follow. I do hope that we can manage to keep her appetite going as long as possible and the best food available.

In general...its a quiet day much as I prefer it to be...

I think that we are going to get a few more things to help Mum be comfortable next week, a back rest for Mum's bed, a device to lower Mum into the bath so she can actually have a bath rather than just a blanket bath/sponge down, Mum may still use a stick to get around but I think we may also be getting a zimmer frame too. We may also be looking into hiring a stair lift.

I'd buy one but not knowing how long Mum has(that sounds so mercenary)to hire one(with repair service)the purchase price would be the same as hiring one for 6 years. Then again, it is only worth it if Mum uses it more than just a few times. I will have to really think this over.

Hopefully, we'll never have to use it but a gadget was installed yesterday which uses the landline but is independent of your phone, if there is an emergency, we can hit an illuminated red button on the receiver or use a button on a wrist band, if pressed it alerts someone to give Mum help. If done it overrides a phone call if its being made or would cut off my connection to the internet. The gadget is hands free, and probably because most who use the system are elderly or disabled, the speaker is very loud when the people at the control centre speak.

Thursday, October 27, 2011

How Do I Feel?

I don't know...

Still think that there are more positives than negatives...

Firstly the scan results are in...He only offered the information after I mentioned we had no idea what they were and when we would hear them. He'd missed when reading Mum's case history that she had already had a biopsy.

There is fluid on one lung(which could be drained off)its not been suggested that cancer is the reason for that. They found a little mark on the liver but again they cannot decide if that is the start of cancer or a harmless cyst that's been there years but may keep an eye on it.

I do wonder if it is whether radio therapy could be used to shrink that as soon as they realise things are changing?

They have as we know ruled out chemo, it sounded today as though they prefer surgery but have opted for radio therapy which will shrink the growth but they don't know by how much/how successful it will be. Its not a cure and could start to grow again(if this happened after 6 months they might give it a go again but if it started to come back within 3 months they probably would think its not worth it.

We were told about the side effects of Radio Therapy(Pain when passing water, passing water more often, sore back passage, diarrhoea, nausea, tiredness, poor appetite and skin reaction.

Having signed the consent form and got home I see a couple of other things we maybe missed at the appointment such as...

Late side effects...minor bowel changes, inflammation of the back passage, narrowing of the water pipe causing difficulty passing water, scarring/narrowing of vagina, dryness of vagina, bladder changes.

I don't know how concerned we should be about the late side effects...

I think that he preferred surgery but thought Mum could not stand the operation so Radio Therapy is second best option. But he says he believes it will get larger and bleed more without treatment. Even with treatment it sounds as though it will grow again. If it does so within 3 months they won't bother to do Radio Therapy again but might if it is happened after 6 months. Again if it reduces in size it would be great if they'd consider surgery.

He has ticked the box that suggests that this is being done for symptom control. Not increased survival...

But if Mum could gain weight and not be so weak after possibly more blood transfusions...could surgery be considered later? Say whilst the growth is smaller having been shrunk by the X-Rays?

It would appear the only place cancer seems to be confirmed is the growth that we can see after the biopsy.

Its the old "if's" and "buts"

Had the growth been smaller when spotted and seen earlier would radio therapy have killed or being smaller reduced much more, would Mum have had a better chance of shrinking it still further with RT or could it have been removed? We'll never know.

We must try and avoid that guilty feeling about neglecting it and seeking treatment sooner.

The fact I am at the pc writing this and also making a cup of tea for Mum and myself at this early hour shows though I am taking this reasonably well and people from the District Nurse, Social Worker, representative from a carer's association and so on keep saying how well I am coping, it is hitting me harder than I perhaps realise.

As said previously, had Mum not mentioned it to the Dr who called, we were none the wiser, Mum might've lived her allotted time, going before this disease killed her and we were ignorant, now we have it hanging over heads even though you could say we are getting care and may also get some financial help.

How do you manage to live as normal a life as possible and not have your mind keep going back to thinking about it.

We're not well off but then you wonder if you should try and go private or start looking at second opinions but I suspect all the NHS hospitals around here and private hospitals too are probably using the same consultants etc...

I'm not sure that Mum helps her cause when at hospital as she plays down the bother the tumour causes her, Mum tends to say something different when at home. It took ages for her to sign up for the RT treatment but at home she said she wanted the tumour removed altogether. She is just happy that the treatment is over within a week and can come home daily.

She wasn't too happy that she may have to have another blood transfusion...but at least on that she has said to me, if I have to have one I'll do it. So seems to have resigned herself to that.

Today, Mum is more in the frame of mind to what it takes to "beat" what we are facing.

They can arrange an ambulance to take Mum to the hospital but its quite a distance(its not local)and Mum wants me to be with her so that leaves only the expense of taxi's(and whether I can do some kind of deal to reduce the cost)or see if I can be entitled so some kind of help by Social Services. The ambulance will not allow me to travel with Mum.

I'll have to look into all that in the coming days. It won't be easy...Maybe I have found use for Mum's small savings...

I Got It Wrong...

I mentioned a product in an earlier post(I cannot find the post to correct it)by Astonish which is an anti bacterial liquid and only cost 79p. It wasn't a product for a washing machine but a waship up liquid.

However, for £2.29 I found a massive bottle of detergent by Astonish called 4 In 1 that does 25 washes but unlike others where you have to buy seperate fabric conditioners/softeners, another item to protect delicates/colours etc...this has that included and also it has something that is said to make ironing easier. So I think that does seem good value.

I have also heard that you should flush a washer out after approx 70 washes to reduce limescale etc...using a bleach but I found some limescale tablets in the local supermarket. You pop one in with your normal wash and it supposedly helps stop build up of limescale on washer parts. I assume its a bit like the kind you pop into a dishwasher. Since buying these I have seen a liquid version advertised on TV(different company)so I'll try that next time.

Its claimed by adding one of these tablets you can use the same amount of detergent as you wuld if you lived in a soft water area so you can use less...we live a medium hard water area.

The washer is fine but where it connects to the water supply we have a leak so the plumber will have to return to stop that(its just an odd drip but if not wiped away the whole shelf becomes wet.

The Tumble drier has arrived and been used, Its basic...timer dial, low and high heat settings(No programmes)and that's it...7Kg capacity so that's 1 Kg more than the washer.

Update:It does dry very quickly but often it will not be needed I suspect. Still it does no harm to have one...

There's Clean And There's Ultra Clean...

The carer's cleaned and creamed Mum...I know all about keeping things clean especially with Mum's health issues...

But after the blanket bath she said two towels were dirty...I've checked them out. One has no marks or soiling of any kind, the other has a very faint and really small(and I mean really small)mark of make-up. I'm not sure I can even measure the mark.


More important things are on our minds with the hospital appointment and what they will do about the reduction/removal of Mum's growth...I don't think leaving it there and doing nothing is an option. I hope that's not what he's going to suggest...

I don't know what to think to be honest, I'm jumping the gun, I must wait and see how the meeting goes.

The tumble drier is supposed to be being delivered today but I've told them to deliver it as soon as possible because of the hospital appointment. I could've waited until Friday(I suspect)but if this arrives, I have everything at last.

The washer is still fine and seems to be working well...but we do have one slight problem. There was on Sunday when it was installed, there was a small drip from the connection to the water supply in the cupboard but not enough to measure or decide when it actually happens...the plumber said he wanted to return and sort it out but I forgot about this for a few days and found earlier today the cupboard shelve soaking wet so I'll have to get it fixed. Probably too much for today...

Yesterday when in the supermarket another shopper heard me talking about Mum...She offered me a lift home with my shopping as she wanted to give Mum and myself hope and support through Mum's illness as her husband has had a similar scenario.

They offered another option as to which hospital to attend(having said that, I think the surgeons/consultants we are seeing are from one of the top hospitals in the area and they do surgeries at other hospitals in the area, that's how Mum is seeing this expert later today)I don't know if the care and treatment is any better there...he wasn't offered chemo, They gave him radio therapy...he lost some of his liver(when the cancer came back)but I understand within three months a liver can repair itself and become full size again(his has)the cancer came back and was all around his stomach area and was so bad his wife thought...this is the end...he was given radio therapy, he's clear of the disease, he's still here and still interested in life. So hopefully, if Mum can stand the treatment perhaps there is hope of her being here for a few more years yet, if her body can take the treatment and the Dr's are willing to give it a try.

She emphasised how important diet is to beat the disease and slow it down...so she mentioned eating many of the foods I would suggest to build up weight and strength...tomatoes, broccoli, cabbage, cauliflower as examples...this would be so even if you are fit and do not have cancer.

I guess I better stop and get ready so we are on time for the appointment...wish us well...

Monday, October 24, 2011


Its been in the news...The Government and experts who had all the rioters in the recent London unrest as to being on benefits and/or being part of the gang culture have been sort of disproved if what has been mentioned in the news is being reported correctly. It would appear initially, very few were from a gang culture but worryingly 100 people arrested were in receipt of Disability Living Allowance.

In the great scheme of things that number is insignificant(DLA is known for being a benefit with the lowest incidents of fraud, it is also one of the most difficult to get)but in the coming days I have no doubt that the media and possibly politicians will use this statistic to tar all genuine people with the same brush and to victimise anyone who receives it. The media and politicians are very good at putting out the negative side of things but the people receiving or trying to claim help rarely are heard.

At the weekend some events took place with ill/disabled people trying to put this right but few if any were mentioned and one big discussion planned on BBC Radio 5 on Saturday night was dropped at short notice to cover another news story which has already received many many hours of coverage. The programme lasts three hours so there was plenty of time to have covered both if they'd wished to.

I have enough to think about with my Mum but I have many, many people telling me not to worry about the future and take each day as it comes, not to look for problems that may/may not exist but when you see posts like the following(plus the comments)is it any wonder many are worried and scared of what the future holds? Changes to what people are entitled to and raising the bar to make it harder to get what you are entitled to so you may find that you are classed as being ok and are no entitled anymore. And even worse as this rug is pulled out from under your feet, you have the worry that will also mean that you'll lose the roof over your head and could end up homeless.

Some help is being phased out altogether and others are to be awarded for a limited time and after a year could be stopped.

I have had friends and family, a social worker, charity representative, Council officials all saying much of what is being proposed "Ain't going to happen!" and that everything will be ok...to use that well known expression "Time will tell!"

But unless something happens between now and 2013, it will and the proposed changes will get through because the numbers are so skewed in favour of the parties in power. And not enough to switch sides and help cause amendments or compromises to the changes.

Of course there is biasness on sites like the following I have linked to but who else is fighting the corner of the disadvantaged?

At least a lobbyist campaign/pressure group like the following is honest and its not being done for a business cause or to make a profit to secure work contracts.

The Invisibility Cloak

Weekly Disability News Roundup

I've Got That Washer Habit...

I've got myself a laundry basket and some more items for when I wash clothes. Now all the regularly used clothes, towels and bedding is washed. I am looking at the three programmes the washer manufactuurer seems to be pushing in its instruction manuel...It is said to benefit the environment not least because you avoid heating the water up, you actually use cold water. And the wash cycle can last as little as 30minutes. Seems strange to me but I may be surprised.

I have managed to get some of the items I purchased last week even cheaper but I could've got some things cheaper today if I'd known the offers available in two shops. Same products/different prices.

But we're only talking pennies...and my Surf wash liquid made up for that in one way...as last week I paid £2 for a bottle that did 18 washes. Today I managed to buy a bottle that does 28 washes and costs £3(it normally costs approx £4.50)

I invested in some more Astonish Stain remover but also in case of colours bleeding onto another garment if you have a mixed colour wash I bought some of those sheets you put in with a wash and also some items to help if you are washing delicate coloured clothes. I still managed to get everything for approx £10 and I have enough stuff to keep me going for a while.

I did a very quick shop just to top up the fridge/freezer and the bread cupboard. So it wasn't a very expensive shopping trip at all.

I spent most money on replenishing the supply of complan...and I have no plans to go out any more for quite some time...

What an exciting day...

Well, I'm away to make Mum's evening meal soon, Mum's asked for a fried egg, potatoes and spaghetti and just maybe I can persuade her to have something afterwards...I always feel a sense of achievement when I can say I have managed to get food into Mum.

To be honest there may be a time sooner or later when Mum will need more care than now but there are so many people popping in and out I think she is getting a bit tired of it all...The District Nurse brought with her what I assume was a trainee and yes they all have to learn but I suspect the reason was to show her Mum's tumour and prepare her for what she may see when she does this kind of work.

There was as far as I could see no other reason for disturbing Mum. And this particular District Nurse has never looked at it yet when she has called to see Mum. Only today.

Though in fairness thanks to DN we have had access to some help and items to make things easier for Mum.

Even Mum is saying that she is looking forward to a day(tomorrow)where no one calls...

Mum is used to the regular visits from her carer.

The New Washer Really Got Some Hammer...

In its first day...

I think I did approx 10 washes(some items I did twice)as I learn what's the best programme to use for various items. But I have a few odds and sods that are not worth putting through for so long and for so few and they are mixed materials.

So I may just wash those few by hand. The spin makes everything so dry everything is ready so quick or they will be if hung on a washing line, on a radiator or in the Tumble Drier for maybe 10 minutes. I doubt it will need to be on for a full cycle.

Now, more importantly...Mum slept not so good last night and every time I woke she seemed to be just sitting on the edge of the bed.

If I put her to bed she seemed to be back sitting on the edge of the bed within minutes so she's sleepy this morning so may have a sleep later as she's tired.

She did not eat as much yesterday...fewer Complans but she had a lovely thick creamy soup of sweetcorn, chicken and leek for supper and today in a few minutes after the carer goes she's going to have some wholemeal toast with manuka honey and later some Special K, banana, strawberry and whole milk later in the morning.

There is someone from the Carer's Association coming to see me later in the afternoon to discuss I assume if I need any help or support and explain what they offer but though at some point I may use their services for now I think it will be a case of saying thank you and not needing them.

Sunday, October 23, 2011

Sunday Morning...

One problem half solved(Computer taken away to be fixed)

The computer guy had forgotten about me yesterday but is now trying to get the failed desktop PC working again without losing any of my files but he may have to re-install the Windows XP operating system.

The laptop that was playing up has died. It will cost at least £90 to repair so I may have to buy a new one whilst I am able...

I cannot really afford to but it will be even more difficult in the future...possibly impossible.

Its like I said its one thing to worry whether I can keep my computers running and afford the cost of the power but when they break, can you afford to have them repaired or replaced.

The washer is installed. It took some doing(its a really tight fit)for the space available and in the end the plumber had to shave/chisel plaster off the wall but most of that cannot be seen.

However, if I wish he will come out and plaster the wall and fill in the holes but if he does take it to the original level the washer will not fit so we'll have smooth it but leave the wall slightly uneven.

Now I am trying out the washer and finding out what is the ideal programme for most items that I wish to wash but hopefully it will be relatively easy. And how much detergent I should add to get good results.

Update:I'm learning!

The washing is so dry when spun I can use the radiators and washing line probably without thinking of using the Tumble drier. Or I can use the Tumble sparingly.

Just doing towels at present...

This machine doesn't weigh the contents as you put them in(some do)so you have to guess or use the guide in the instruction manual to give an idea.

Blankets later...I say blankets they are more like sheets...I don't think we have anything that we could call a blanket.

Here's a bit of hot news...bit late for me...Hotpoint have a new range of Tumble Driers coming out next year and they are more economical to run as they are using some technology usually associated with fridges which means they will be warmer and so more efficient(that sounds a bit "Double Dutch!")but its something to do with condensers...no good asking me what that means...however, the downside is until they are good sellers they'll probably cost something in the region of £600 to purchase(roughly double what the present range cost)

Saturday, October 22, 2011

Mum's Had Another Good Day...

Nothing exciting has happened but she had some restful sleep.

She has been bright.

And her weight seems to be improving again...

Mum has managed to have some more Complan, toast and honey. Tonight Mum had potatoes, kurly kale, chicken and gravy followed by strawberry cheesecake and a mug of tea.

Excitement At Gildy Towers...

The washing machine has arrived and will be up and running around 11am tomorrow.

We are awaiting news where the Tumble drier has disappeared to...wonder if it could arrive tomorrow?

I am getting lots of advice on how to use the washer and even if I was doing very little washing it would appear that the machine can detect smaller loads and will use less water etc...so perhaps it really will make a difference to my life.

I used the new Vacuum cleaner yesterday and what a difference it has made...the carpets may be old but it has brought them up nicely and what a lot of stuff has come out of them...

I suspect if I keep on top of the vacuuming from now on there will never be the amount of fluff and dust it has sucked up now and I may get away with vacuuming once a week.

Two of my computers are playing up and my computer repairer thinks they will be easy to fix...I hope so, he forgot about me(he was supposed to call at lunchtime)so he's calling tomorrow morning at 10am so it going to be a busy morning...

BTW that probably makes me sound quite well off...but all my PC's are either very old or are second hand.

The Next Step In Our Journey...

We have just received a letter for Mum to be seen by a Dr at the Hospital next Thursday regarding what treatment is planned for the removal of Mum's tumour.

Whatever we are told(good or bad)and how much can be done for Mum, our National Health Service has(so far)seen Mum within the official guidelines for calling in cancer patients...no longer than 14 days for an appointment/between appointments.

Thursday, October 20, 2011

One Of The Worst...

experiences Mum has ever had.

She hated the CT scan. Well, they are not things to enjoy anyhow. Waiting for results that may tell you really bad news. Even thoughv they are clever and it may mean the results may also help medical specialists improve the treatment that they give. We knew that they were going to do a scan of her stomach last Friday within approx a fortnight as the Consultant mentioned it but I heard them say today that they were also scanning Mum's chest and back too...

They also tried to make Mum drink a massive amount of water(which had some kind of dye solution to help the X-ray work)Mum managed quite a lot but not the whole amount but I guess it must've been enough though. As it took Mum 50 minutes to drink what she did and she seemed to be the final scan of the day perhaps they decided that they could not wait any longer.

She looked so vulnerable in hospital but was so much brighter at home...Mum had some more complan and baked beans on toast and a couple of fish fingers and now a mug of tea...

Of course regarding the other, we now have to await the result...oh dear!

A Strange Day Indeed...

Mum had by my standards a restful night and seemed to sleep well.

But knowing that she had to eat very early because of the scan later today...

At 6.45am Mum was having breakfast. I managed to get her to eat a full bowl of Special K, milk with banana and strawberry. Followed by almost a full slice of brown wholemeal toast with Munaka honey(my spelling may be wrong on that one)

She has just had a chicken complan...Mum seems to like the complete range of complan and often asks for them now. She may have another before we leave at lunchtime for the hospital.

I was almost out of a many flavours of complan and couldn't really see when I needed to go out again with the fridge/freezer being stocked up so unusually for me(I don't think I have ever done this before)I was walking around the local Tesco's supermarket at 7.30am where I again came home with the complete range of that product, some extra milk, some kitchen rolls and some cleaning products...

The plan is not to go out shopping well into next week so I can give my full attention to caring for Mum.

I was up early because the recycling truck now collects at 7am and luckily I had mine out and ready for collection but other neighbours were dashing around coming out in their dressing gowns trying to catch the truck before it disappeared so I thought I might as well go and do the shopping. I know life goes on but it seems so strange still having to think about shopping and such tasks...

I have some blankets/sheets to go out on the washing line whilst we are out and hopefully I am on top of it all now but next time we should have the washer.

The carer has arrived to give Mum a wash and put cream on her body to keep it soft and help Mum get dressed and then we can relax if that's the right word and just wait for the time to come around for the taxi to take us to hospital. I know Mum is naturally worried, well, we both are and yet there is a strange calm too.

I've seen Mum as the carer started to wash her and she is still quite thin but I still think she has put some weight on in the places I have mentioned in previous posts. I notice the weight loss more around the back area...

Well, we can only do what we are able I guess...

Update:Dare I admit though I am not showing it...I'm starting to panic about the scan. The result and what it may reveal...Its also causing me to dwell on my own mortality. The thought that one day I could face a similar scenario.

We all want to pass away peacefully and not know our fate.

I sometimes think that I have a faith and belief and then its a human trait I guess, I find myself questioning it all. We knew nothing before we came into the world and its the thought of crossing that line where suddenly we will no longer know anything again.

None of us asked to be born, of course we'd have missed all the wonderful things this world can offer but had we not been born we would miss the pain of losing our loved ones and the scary part when our own life ends, especially if you are told you only have so long to live...but the trouble is that we can't change anything.

This doesn't sound like me at all, I guess we all have to visit dark places at some time, hopefully its temporary.

Wednesday, October 19, 2011

Well If The Washer Is Being Fitted Tomorrow...

It will have to wait but I am ready for using it...I used to as I said use well known brands of detergent but have been using Cussons This Morning Non-bio powder for hand washing and its fine for a washer too but everyone says powder makes such a mess so I was in a shop today and they set me up with Cussons This Morning fabric softener(does 30 washes)Surf Small and Mighty washer liquid(does 18 washes and as an alternative some washing tablets(12 for £1)

So I have all my washing detergents for as little as £4...

I think that's pretty good...

Update:The latest news is that the washer should be fitted and working around 11am on Sunday morning and looking at the weather forecast it could not be arriving at a better time especially for keeping on top of bed linen.

And the odd item of clothing but you know we really don't have a lot of clothes to wash so unless I save items up for a decent wash, I will probably still do quite a bit of hand washing.

If I was alone the amount of bedding I would wash in minuscule(as I have said previously)I have for some time found that I am so warm and enjoy the freedom of not using any bedding has brought.

The kitchen gadget that I think to be a waste of time in a home(not necessarily in the catering business)is the Dish Washer...How long does it really take to wash a few dishes and some cutlery after a meal or if you save up the day's washing and do it before you go to bed, if left in a tray the crockery dries very quickly and you can avoid having to dry everything with a tea towel. How easy is that?

It must take quite some time to load and unload a dish washer. I suspect I could be almost finished in the time it takes to do that.

There's Been A Cancellation...

Someone has dropped out of having their scan so Mum has been asked to take the appointment at 2pm tomorrow afternoon...

Naturally we are concerned...

Here's hoping!

Update:Mum's had four Complans today, Two fish fingers, scrambled eggs,toast and Cornish ice cream...and of course the obligatory mugs of tea too.

If Mum wants to eat(and can manage to)she has to do so between 6am and 7am as any later the scan will be affected...

Tuesday, October 18, 2011

Feeling A Bit Down Today...

Well, in the last hour or so I'm finding it a little difficult to shake off the worry of what will happen when Mum has her next hospital appointment.

I'm not so worried about the operation and possible treatment Mum will be offered(Surgery or radio therapy)

Its that scan she is being lined up for...How bad will it be if it has spread and been growing for years(even if slowly)or how wonderful it would be if we were told the growth that we can see is all there is and it hasn't spread but that may be secondary cancer for all we know.

A little bit of forgetfulness I could live with and its to be expected as the population ages but to have to battle against both.

I'm away to give Mum a cuddle and my time...

I'm making headway on the tidying up and washing. Tomorrow I'll get vacuuming. And then I can give as much time as possible.

I'm hoping that Mum will still think about having what she said she fancied for a meal tonight, fish, chips and peas followed by Cornish ice cream but she's already had three Complans(which are nourishing)and she may have some soup later...but I like to try and get something on Mum's tummy at least once a day...

Oh Mum had some Gypsy Toast at lunchtime which had a full egg in the bread so that must do some good.

Scrub that! Mum had some soup, a creamy vegetable one and decided to have the scrambled eggs for breakfast.

Monday, October 17, 2011

Maybe It Is That Simple...

The Plumber can do the work regarding the washer for £60 and plans to return in approx 2-3 days time so I suppose that won't make a lot of difference now...

I've activated the Hotpoint Guarantee on the Fridge/Freezer and these guarantees are funny aren't they? They told me that the repair is free but they charge £109.01 call out fee and there is no accidental damage included(you break something...you pay for it)

Well, I have a five year guarantee from the retailer and that includes accidental damage...and I hope the fridge/freezer is of such high standard it will last a reasonable amount of time before I have to worry about calling anyone out.
It is slightly smaller I have found as I cannot get as much food into the freezer but its still ample for the two of us and big enough for me if I was on my own I guess.

Update:I'm just back from a shop at the supermarket.

I've still managed to get quite a bit into the Fridge Freezer and hopefully most of it will do Mum good...

Fresh soups in cartons, salad stuff, tomatoes, five pints of semi skimmed and five pints of whole milk, eggs, fruit juice, cooked chicken breasts, sliced pork, chicken and vegetable pies, leeks, clover, actimal, a variety of frozen veg, Brussel sprouts, kurley kale, Cornish ice cream, Ben and Jerry's ice cream(on special offer)Nestlé's Smarties ice cream cones)on special offer)cheese cake, cheese, Yorkshire puddings, roast potatoes, blueberries, strawberries, oven chips(crinkle and ordinary)fish fingers, salmon, haddock, plaice and two bottles of fizzy flavoured water. It's more than I at first thought.

I don't really understand the first drawer which is for fast freezing as its not really a drawer at all...it is a flap that pulls down and the space is very tiny and it is a most peculiar shape...In the last freezer it was a normal drawer that could be pulled out but this is more like a letter box but it gets narrower the further back you go into the space, its like two slanting walls joining each other. So really it has almost no use.

But I have purchased it so I'll make the best of it. The company suggests that you can create more space by removing some of the freezer drawers but that would mean stacking food on top of food and it probably would look a bit strange and you have to keep moving things around as you look for something.

We have someone coming out to help fill in some forms that may mean Mum is entitled to some extra money towards her care but the trouble is Mum is...like many she wants to show how capable she is and plays down problems, many don't like to admit they are ill(in Mum's case seriously ill)but the Social worker thought that Mum needed care hence why we now have a carer and are paying for the service. If they talk to Mum she'll say she's doing ok...

Often people who need most help, just get on and do it because you have to. And you get used to doing so.

So we'll either get it...or we won't, we'll just have to see...The Social Worker visits tomorrow so I'll talk it over with her and try get some pointers how I should approach this possible help so we hopefully give all the right answers.

Well, It Was Never Going To Be Simple Was It!

The vacuum cleaner is great but I managed to damage the plastic slightly on the handle part because I had to attach it with some tight fitting screws(No screwdriver)and the knife slipped but its nothing really and it won't affect the use of the vacuum.

I knew that I had saved approx £5 on the vacuum cleaner but on the box today I saw £89 on it so perhaps I've saved £28(in reality)

I'll start using it tomorrow...

The Fridge/Freezer looks great and I think its a good investment. The person who delivered it had it flush against the wall and it fitted in the room well and takes up not too much space.

Unfortunately, that means that the internal drawers and containers cannot be pulled out properly when you open the cabinet doors so I have had to move it further away from the wall so we can get into the interior properly but this now means that it is approx a foot away from the wall so there is quite a gap. But what can you do?

It has to be switched off for four hours before being switched on and used so later today I am off to buy what I think we need and fill it up gain. Whilst I can I am looking at all the best food I can think of that will do Mum well. Fish, eggs, salad, ice cream, vegetables, meat etc...

When my income drops and I am alone I will have to probably eat a fairly low cost simple variety of foods(Cereals, porridge, beans on toast, soups, spaghetti etc...)Not that there is anything wrong with good basic wholesome food(Comfort food)but whilst we can afford to I want to have both of us eating as well as we possibly are able.

Can I be bothered to make cakes and home made bread if alone? I have the equipment but is it worth the time and effort? Will I save money doing more of my own cooking? Often some items are just as easy to pick up from a supermarket shelf. Will there be enough room in the freezer to store home made soup etc...

Buying convenience food can be expensive but staple food like a loaf of bread being already baked and on sale in a supermarket will be no more expensive once you take into account the cost of the baking of it at home in an oven.

The washer will arrive in the next day or two I assume with the Tumble Dryer. The fitting of the washer is more complicated than at first thought.

We need a waste pipe or something and probably a hole in the wall so more expense and delay. But it will be done, then we are in business. So for now I still need to wash things as I have been doing. Perhaps the money saved on the vacuum can be put tow rads the plumbing of the washer.

We were visited by the District Nurse and carer today who both wanted to know what happened with Mum on Friday at the examination with the Consultant. They were reasonably happy and thought it better news than originally expected.

Mum had been quite positive about what he said and liked him but after listening today and hearing it talked over is a bit more worried, frightened and not as positive.

I think its the realisation that you have cancer(even if it is slow growing)but she's not bothered about the operation or radio therapy regarding the growth that we can see, she'll be so much more comfortable when that's gone. It is what the scan may show and how advanced it is...even if they say she'll die of natural causes probably before it gets her.

Its not knowing how long its been there already and how much its progressed. And whether the external growth we can see that started off our journey is the first cancer and therefore if lucky and we have it zapped, we may find Mum is clear(that would be a great result from the scan)or that the growth is a secondary cancer and it's already taken hold elsewhere.

Then we could be back to having a time limit on Mum and the thought of Palliative care again. Mum hates the idea of the cancer growing inside of her and being left to take its course. I'm not too keen myself.

If it is slow growing, it may be livable with. The fact is, we have no idea how long its been doing so, if its relatively new or has been happening for years. There are lot of "If's"

A kind of friend of Mum's(he used to work with my Father years ago)has had and we are told he has beaten Bowel and Skin Cancer in recent years(He turned 90 in the last few weeks)

I don't know, perhaps radio therapy can be used elsewhere? Can surgery be considered? Or again will Mum be seen as being too weak? I got the impression they'd do an op on the growth that we know of but were not keen on internal surgery or the use radio therapy elsewhere. As I have said earlier she is gaining weight and still has her appetite.

So that is building up her strength and giving her something to fight with and I heard today from a District Nurse that they will keep an eye on her blood and if needs be they will do a transfusion as and when.

Saturday, October 15, 2011

I'm Almost Excited...

As long as I am in this house I have the luxury now that I can still do odd items as a hand wash(as it may take time to build up a wash load making it economic to put the washer on)and if the weather is good I can still use the washing lines in the garden.

On the other hand if I have to move in the future and have no garden I will have use of a Tumble dryer and washer. Again, I will be able to use the dryer if I hand wash odd items or have wash load that I have saved up...

The washer I am told has a good spin cycle and because it gets a lot of water out, the dryer does not need to be on as long.

The washer it appears has a good general programme that does most things so I don't have to mess about trying to work out all the programmes so its very much just switching the washer on and it does the rest.

Can I was a duvet in a washer? Will it take a double bed size?

Can I dry a duvet in a tumble dryer?

How do I know what a 6.5 kg load is? Is it guess work?

Of late I have been using a washing powder that only costs £1 a box and seems as good as any well known advertised brand...Its made by Cusson's and is called Morning Fresh(Non Bio)

Should I consider using a fabric freshener?

The vacuum cleaner is not as big as some but is bag less and I picked up a few and this seemed the lightest of the models available. It also has a hose attachment for doing furniture and stairs...

And the fridge freezer is big enough I think(may be slightly smaller than the one I have had)I'm not sure...big enough for the two of us I suspect and would be for me if I was alone.

There were some larger ones or rather they were taller but I would've been struggling to reach inside and would have been lost inside. So I think its pretty close to the size I had...

And again if I have to move hopefully it will fit the new place more easily.

I think the drawers and interior seem more sturdier than others. As it will now be indoors I probably can save some money on the electric bill during the Winter because I had to keep the outhouse warm to stop the freezer from not working.

Even if I leave the heating off in the house it will still be warmer than the outhouse so it should still work ok...

I've bought a five year warranty on everything but the vacuum...for 5 years...so that added another £400 but at least I am covered and I don't have to look for it if times get more difficult. As they will get the hammer they might in a family household, I may be lucky and see them last 10 years, if I last that long...I could do with an extended guarantee on me!

To be honest a lot of what I buy these days if its for the house I tend to think more in terms that this could be the last time that I do as if they last like many of the previous household goods have they'll out live me.

Example? Our TV is approx 30 years old, if I buy another and it lasts that long I'd be well into my eighties...

I hope that I can afford to use everything as energy prices keep increasing each year.

I have had some help from some friends on the the internet so it should be quite easy.

It will be fun learning how to use everything.

Friday, October 14, 2011

We're Back!

I think/hope things are better than we feared. Chemo is out, they say it would kill Mum. Funny to think the cure can have the opposite effect. There is cancer present but they hope it hasn't spread(It is so slow)and he did not say how much was there(if its slow maybe its not that much)

They wanted to leave it alone(If its not bothering you, we'll not bother it)but when they realised its in an awkward place, they've arranged an appointment in a fortnight to decide if surgery or Radio Therapy is the best idea and we could lose the growth altogether.

The only glitch being they may give Mum a CT scan which may show it hasn't spread(Fantastic!)or it has spread but they say it only shows what is there and not change anything(unless you count knowing the full picture)

Hopefully, if that is the case there is a possibility its so slow growing that Mum may pass away before the cancer causes problems.

So its news in the middle, still a bit of limbo but Mum is very positive. And I feel some relief rightly or wrongly.

Funnily enough we were given the choice of attending one of two hospitals for treatment our home is between the two and the distance is approx the same..we started off at one and will now be seen at the other one.

There's no good time to get Cancer...but it would seem its better if it happens when you are older as it takes longer to affect you, you stand a better chance of outliving or beating it perhaps and the Consultant did say as the population ages, they are seeing more of this in the population. When younger its more aggressive.

Am I being wrong as the news sinks in and I remember what we have been told, is it as good a news as we think or the best we could hope for.

Mum is very happy and has convinced herself that it hasn't spread but if we have the scan will we feel that way if we see it has knowing Chemo is out and they would not use radio therapy on an internal organ.

And having said Mum may pass away before cancer would be the reason...surely, if Mum was to live a long time eventually the worry of being given a time limit would be raised again and then we'd be back to palliative care.

Maybe I'm just being too pessimistic and I am demanding too much. And I really should be overjoyed with how things have gone so far.

I should be looking at a glass that is half full rather half empty.

This Is It I Guess...

As it is for many others every day around the world...

My stomach is in knotts.

We leave at 10.45am and are seen at 11.20am

We are expecting bad news but praying for a miracle. There was a lot of heart to heart talking through the night and Mum was saying what she wants for her funeral...

And most of this was coming from Mum herself...I was was not having to ask those questions you'd rather not.

A day we are not looking forward to...it would be nice not to go but that wouldn't change anything and not alter what we are going to hear...

Thursday, October 13, 2011

It's So Awful Talking About Household Gadgets...

and problems I am likely to face when my concern and priority is Mum.

Makes me seem so heartless and cold.

Mum's even got to the carer and District Nurse, they've only been calling for a few weeks and they're filling up and walking away with a lump(wrong term probably)in their throat and trying not to show it.

The carer said no one has got to her as quickly as my Mum and what a lovely lady she is...

And of course we have to face the music tomorrow...

Now I have just listened to one of Mum's friends husbands down the town who lost his wife in August, we just found out weeks ago but I still was unsure how accurate the news was...

It is and he's told an horrendous story about the consultants and hospital Mum is being treated at too long to go into here but it does involve the Cancer Department.

His son is very high up in Nursing Management and has complained to the Trust...It won't bring that lady back though. The husband is not coping well and is attending Bereavement Counselling.

Makes me feel confident regarding our appointment tomorrow...not!

Wednesday, October 12, 2011

The Only Good News Amongst The Bad So Far...

The local retailer I popped into on Saturday, I phoned today to find out the opening hours and got hold of someone who knew more than who I saw at the weekend. It appears most items can be delivered the next day.

We can put the fridge/freezer and tumble dryer in the dining room. We know the vacuum cleaner we're buying but this is the best bit the retailer can and will do some joinery and plumbing so the washing machine will fit and be usable and if not will find a model that will. So all being well I am arranging and paying for all these items and discussing the installation later today.

Whatever happens I better go ahead and do so for Mum and I suppose from my own point of view it will do know harm to have what are seen to be essential gadgets for normal daily living.

The Tumble Dryer will have most use to me as I cannot always use radiators to dry items and if the weather is very bad I cannot always put everything on the washing line, if I move somewhere where there is no garden, a washing machine and tumble dryer will be a must. But as Tumble Dryers are quite heavy on electric I'll try and save it all up so I do only one big wash per week or whatever.

The washer is so good washing will be spun so much, the washing will be dryer for putting in the Tumble dryer so I may save 20 minutes drying time.

I have the option of extended shop guarantee and you pay monthly but I'm going to pay outright in case money is tight and I haven't any spare cash. I've already found something else to spend that money on, people keep saying you'll manage, you'll be ok, it will be a struggle...It is possible to survive on a very low income as a single person something else you haven't thought of makes you wonder where you will find the money to afford it. I have to take prescription drugs to keep me alive and try and stabilise a condition.

When I am finally alone unless I invest in a special certificate from the NHS I have to find approx £50 per month. And I can only avoid the charge when I reach the age of 60 and that's still a little way off. So a certificate is a must as I can save approx £500 but £104 still has to be found and something else will have to be dropped. Or move...
The washer, tumble and fridge/freezer are all Hotpoint, the vacuum is a Bissel. The shop looks really rundown and is a bit like an old wear house, wallpaper is coming off the walls and it could do with a lick of paint but goods wise the prices are lower than many places and delivery is free too. I think he knocked £10 off the vacuum.

The Fridge/freezer is slightly less expensive in white too...It might be a bit smaller than the one I have now but it should be ok for me. There were some really big models but they were probably too large really(They were taller than me)

I hate having to say that I have to use Mum's savings a little but because of buying items to make her life comfortable, the funeral and high energy bills because she's keeping the heating on more, I'd rather it was used to help Mum. It will never be reduced to a silly amount whilst Mum is alive and I'll be desperate to make what remains last as long as possible but I suspect even being careful it will last perhaps 2-3 years at most.

Then I'll need to apply for help again.

If I'd been around retirement age and on my State Pension I'd probably be reasonably comfortable but its too much for me to have in my own account and I'll be worse off coming into any savings Mum has.

And as I said previously I really would like to take some time off to contemplate before deciding what the future holds for me. I have a feeling that will not happen.

I'm Prepared For Bad News On Friday...

No, I'm not really. Are any of us? Maybe we try not to acknowledge what we don't want to hear.

I get the impression from facial expressions from the carer and District Nurse its not looking good. Its also the looks that more or less say "Let Mum have whatever she wants" for the time she has remaining.

Even the carer today was preparing me to expect bad news on Friday and that it doesn't look good.

Until then you can kind of fool yourself nothing has changed but in my heart of hearts I know that it has.

Tuesday, October 11, 2011

Tonight Is Different...

Not having a Fridge/freezer really messes up what you can do for a meal.

Fortunately, there is a big supermarket at the end of our street so tonight I am going to use their freezers and buy something, bring it home and cook it immediately so I don't need a freezer of my own.

I need some bread, complan and milk(Long life)as I have nowhere to keep it chilled and once opened it will go sour quite quickly but so far I am managing to keep it ok for at least 12 hours so I can use most of it up.

I think it is more important than ever to keep the disadvantaged(income wise and the disabled)the chance to live nearer to the centre of a town where all the amenities are because the cost and viability of public transport and taxi's becomes more expensive the further away that you live. And living great distances away means you are more likely to become a prisoner in your home.

I have a feeling that in the future I will have to move to another part of town because of changes in help I am entitled to. I am unaffected by changes on property being passed onto other family members because my name has been on the property for over 25 years. That has been stopped for new tenants but new conditions being put in place will still make it difficult to stay put.

If I am forced to move I worry that the new location will not be as safe, as nice and will I still be under the same Dr's that I have at present.

Should I risk looking at a private Landlord? Of course there are decent landlord's but you hear of so many horror stories. If I do I may regret that decision. Is it better to stay with who you know? Once you switch its virtually certain you'll never get back.

And if you don't fit in with the new conditions and income dries up altogether...Maybe you could become homeless.

You can't stop yourself thinking about such things.

That should be all in the future. For now my priority is Mum.

It's Not Getting Any Easier...

Walk don't run!

I keep saying that but the taxi has now been booked for our appointment on Friday.

The Social Worker was due to visit again today to see how we are getting on and see how the plan she started is going regarding having a carer call alternative days but we've had a phone call saying she is ill so its been put back to next Tuesday by which time we'll have been given a glimmer of hope or the worst case scenario.

I don't know why but if the carer is supposed to be coming alternative days and she started last Thursday that would mean...

Thursday, Saturday, Monday, Wednesday, Friday, Sunday and so on but for some reason her time sheet says and it seems it cannot be changed she will be here Wednesday and Thursday this week and then return on Saturday so that's two days together. I thought if she came on Friday Mum would be prepared(Dressed, washed, cleaned)to go to the hospital.

Mum is still able to dress herself.

So it will be down to me then...

The scariest part about Friday is that we appear to have already been told treatment is out but I keep reading of people having scans, x-rays and other tests, being told even if weak they have been given the chance of Chemo and/or surgery.

Mum had surgery and General anaesthetic for a hip operation two years ago and came through it so well and within two hours was asking for me. Mum has improved in the last two weeks gaining weight and an appetite again(maybe through the blood transfusion and my getting nourishment into her)So if she seemed weak a week ago, this must work in her favour?

I know everyone is different but I hear so much of how chemo shrinks tumours even if they are in the lungs or liver and kills them altogether or reduces them greatly.

Some people have a combination of chemo and radio therapy(and surgery too)

It seems we'll be offered treatment where they slow it down but it isn't cured so we are living with a time line hanging over us.

Or does ruling Chemo out altogether mean we're on a time scale and waiting for the inevitable. Years ago I heard of some men that have Prostate Cancer but the progress is so slow that old age kills the person before the disease does.

I keep reading from reliable sources that Bowel Cancer is a very slow growing type(hence why they keep saying its important to catch it early)but also the fact it slow can mean for many you could be lucky even if you are given treatment that makes you comfortable old age may get you first. Look at me trying to convince myself there are more positives than negatives.

Its a minefield.

I was told by a GP who saw us before Mum started her visits to hospital treatment would only be refused on whether she is weak. Not age or cost.

I think Mum is the kind of person who would rather go for it and it fail and her lose the fight quicker than live longer and know what's coming.

Its so difficult trying to decide what to ask, what to accept on Friday. Whether to question what we are offered.

I remember when I was diagnosed with kidney problems things were progressing nicely then one day the chairs were pulled together and the Consultant had some very bad news to impart. If it had not been for his trials of a combination of drugs that had helped another patient and he was giving me the option of following a similar route, I doubt I'd be writing this.

Perhaps there is a trial Mum could take part in?

Who Benefits?

I've enough to worry about with Mum(and with the cards fate has now dealt us)

I've always had to fight for anything that I am entitled to and often been without help that I probably could've claimed for or did not know of, so I missed out for years and years.

I have my own horror stories where I was heading for kidney transplant or dialysis, absolutely lacking in energy and so on but I still had to sign on as though fit for work but a few kind souls could tell that I was seriously unwell so probably as long as they could, they took a compassionate line with me and found ways to protect me, the rules were followed but I was unofficially allowed some slack. It was never said.

Of course some people were hard...I had someone in a wheelchair(who you'd hope would be compassionate)practically saying "If I can manage to get out there, why can't you?" Every individual is different.

I had a personal advisor at some point, she couldn't get my name right no matter how often we met or had it written in front of her. That's how much they cared. If successful she was probably on a bonus.

I had to attend an assessment regarding my fitness(this was before private companies were brought in to do the work)and that Dr said that I was fit! This was when I was being told things were not looking good.

I saw the report afterwards and a lot of what I had said was not accurately recorded(it was lies)

We also had trick questions where you could not win whatever you said...if you said I sit around watching TV all day(you are lazy slob)if you said I try to do a little walk and some exercise, they went away with the attitude of, if you can do that, you cannot be so ill. But the sickest person tries to improve themselves and most health experts encourage you to try and do some limited exercise.

With the help of a charity advising me, another Dr examined me and I was told I should never have been failed on the first test and probably should not have even had to attend an assessment(all the information was in the forms I had filled in and I had the support/evidence of my own Dr and a top hospital consultant)

I know under the new rules being brought in both of my benefits will be reduced by 20% and/or one is being scrapped altogether assuming they say I can still have it. Both if the proposed law is passed will be obsolete as they will be given a new name and there will be new conditions that will affect whether you qualify for it.

If it stops altogether heaven knows what stress and worry I'll be under.

Suddenly when any money stops, it is frightening even if you launch an appeal and many are successful. What do you live on whilst appealing?

Everything is up in the air again with proposals for some benefits being scrapped, amounts awarded reduced, conditions of the rights to some being raised, making it harder to obtain. You know the kind of thing...if you cannot walk 200metres without pain and difficulty, they'll now say it has to be 300metres.

And politicians and the media are playing their part in causing a "them" and "us" feeling in the population(genuine people with genuine concerns are ignored at large)but they always find the fiddlers and that gives all a bad name and an excuse to call everyone a scrounger.

Those in the media or Parliament will only know how difficult it is to get help if they suddenly find themselves without a job, they become ill or have to look after someone who is in need of care.

Someone once said to someone on Disability Living Allowance be careful what you admit to doing because if you look after someone and are receiving DLA they will probably say "you are fit as you are looking after someone" And take the award away.

They don't take into account it could still be very difficult to do and its a struggle but if you are the only living person who can be there 24/7 what choice do you have?

That benefit is to help people with disability problems live a more independent life but doing so they are now seeming to say you do not need it or you can manage on less. Because if you use aids to help you do daily tasks and help with mobility, it doesn't mean you are better but they are saying more than ever if you aids to help, you're alright.

We're always being told that there are many benefits that are never claimed. That looking after someone and keeping them in their own homes actually saves the State money.

When you've had to go through the system you can understand why many prefer not to take what they are entitled to.

Believe me I wish I was in a position where I did not have to depend on handouts and jump through the hoops but if you have to accept help you have no choice.

I have had times where I have not claimed what I could or not been entitled to a technicality. I have had times where I have been told(as in the case of Mum)we could've been claiming something for over 3 years and are now more less being told why didn't you?

A lot of people say "If you are genuinely looking for work" or "If you are genuinely ill, you've nothing to fear, you'll be looked after" Not forgetting those who think that because you look ok they have no idea how ill you are. If only, if only...

Unfortunately, any example given will always be(even if there are many examples)anecdotal and it is really difficult for some this to be heard or printed in the media, for whatever reason they seem to prefer to ignore an alternative view.

Many would not so bothered about having to be reassessed if they felt those carrying out the tests to be fair and you are allowed to give evidence from those who know you best such as Dr's, Consultants, Social Workers and so on but it has to be said few if any like the company that the Government uses for this task. And stories featured in links such as those below do not help increase confidence in how assessments are carried out and changes being brought in...

Mirror Blogs

Free Speech?

Blog That Puts The Other Side

Monday, October 10, 2011

I Can't Change Anything...

And that really hurts.

I know Friday is coming and nothing can be done.

Mum is panicking a bit. She's just woke out of a restful sleep and the first thing she said is "I Want To Get Better!" Of course all I can say is "I Want You To!" and "I Know That You Do!"

Even I find myself waking up, if I manage to doze, I immediately have that knotted feeling in my stomach and feel worked up.

It takes a lot to stop my mind racing away and take one day at a time.

The carer has been again and done what she does, she thought Mum was brighter.

Another person who works for the company came to fill in a care plan but it doesn't really amount to anything more than a little bit of a potted history of Mum. A couple of questions have wrong answers but not enough to really affect things and they will not affect the drama we are now facing and the care and how Mum's illness will progress. One answer says Mum cannot put her shoes on...she can!

That she has a history of falling. She's had two major falls that needed hospital care but is that a history?

And one of those wasn't really a fall, she went down onto the bed and rolled off. If she had not rolled off she'd have been OK.

The person doing the plan asked if Mum could get off the bed and walk. Today with her walking stick she was quite nifty and did. But her legs are so thin...

Having said that Mum is putting on weight and I am not imagining that she is...last week her ribs were less noticeable now her tummy is filling out again...Is it the blood transfusion, getting more nourishment into her or both? I don't know.

Mum's already had a cup of tea and two complans(Banana and Chicken)but with the fridge/freezer out of action what to feed Mum tonight so she has something on her tummy. I thought could I get a small portion of rice with sweet and sour chicken? Otherwise it may have to be fish and chips again, then we're back to whatever I have in a can or the old faithful eggs(scrambled, fried, poached)Potatoes of course.

Please God we get some good news on Friday and its not all sadness, doom and gloom.

Not sure that I can add much more in these final few days before going to hospital for the results.

I think I've exhausted all my thoughts...after Friday, who knows what state we'll both be in. If its better news than expected we'll be shouting from the roof tops and there will be lots of giving thanks for a miracle.

If its bad there will be lots of tears, kissing, holding each other close, depression, worry and despair. And trying to support each other through difficult times.

Sunday, October 09, 2011

This Is Going To Be One Of The Most Difficult Days...

So Far!

Mum is panicking! And there is nothing that I can do. I can talk and try to offer reassurance. I can hold her hand, cuddle her...be there for her but she simply cannot rest. All she can focus on is Friday and what we suspect will be bad news.

She doesn't want to know...she does want to know.

She doesn't want to wait until Friday, she'd rather know now...

But its Sunday, in theory Dr's surgeries are closed, hospitals wind down over weekends. Its so difficult, I'm not sure anything I can do would be the right thing...

Saturday, October 08, 2011

How Do We Survive Until Friday? How Do We Survive After Friday?

Its starting to hit home that Friday is the day we receive news that a miracle has happened and everyone is wrong or it is what we fear and possibly how long Mum has. Whether there are any options if Chemo is out.

When I lost Dad we had each other to give support and strength. I can give that to Mum and in a strange way even though Mum is the victim, she manages to send such vibes my way.

Mum is starting to think about Friday so this week will be difficult.

I remember when my Father went into hospital and we were told "We cannot get him better but we can make him comfortable" Twelve hours later it was over...Well, no it wasn't as I had to start to arrange everything. I had to collect the few personal possessions from the hospital. You go in with a person and come home with a few "bits and bobs"

I also remember having to leave Father so they could do tests and whatever they do and Mum and myself walking from the hospital into the town centre and trying to get a cup of tea and very light snack(How we ate I don't know)we just cried and cried and did the same when trying to eat our meal. People must've wondered what was wrong.

I suspect there will be a lot of crying and holding of each other this Friday too.

I cannot begin to think how we'll come to terms with what we are told and how we are expected to continue trying to have so called "Normal" life.

Oh I know I/we are not alone and why should we not be touched by sorrow when thousands are daily/yearly. The sad fact is as we get older it will be either someone we love that leaves our lives or it will be ourselves.

Of course I wonder what the future holds, financially I'll struggle. With new rules being brought in I'll probably be forced to go along with some new rules to continue getting entitlement to help being not so good health wise so that will be a worry. I have heard too many cases to dismiss the scare stories as just that.

I'll worry that I can keep a roof over my head.

I hope too but there is no guarantee this can be done and perhaps its a daft idea to use up any savings which are precious...I want to take a year off and not think about anything at all.

I'd like to go on a holiday but if you spend money wildly that will go down like a lead balloon and if you did manage a holiday to try and improve your mental state, someone, somewhere will say if you are well enough to go away, you are fit ...period.

So in a way you are a prisoner in your home. And you never know when you may be called in for tests regarding your eligibility so how can you go away?

Anecdotally, I read the other day of someone who has difficulty going out and some carers had said it would do this person good to go out and join some kind of class to improve confidence etc...

On the way a taxi driver was talking and he asked if this person was on holiday, she was honest and explained she was on the sick and going to the leisure centre to take part in something that hopefully will improve her health, he came back with a typical response..."You Don't Look Ill" Many of us don't!

I'd love to be in a position where I am not beholden to any Government department but when you are on a low income or are having to accept help they have you hook, line and sinker. If you accept the "King's Shilling" to use an old saying, you cannot complain if you have to jump through hoops and meet the criteria the Government lays down. Many have no choice. I wish that I did not have to.

The hatred stirred up by the media and politicians against all people who are helped in some way by the state has created a "them" and "us" situation where society is divided.

I think that life can be very sad...

The future is going to be very uncertain.

I have people saying that I should be able to stay where I am and have a reasonable life and changes coming are more likely to affect new people who need help but if I because of Mum's meagre savings have to come off state help say for a year or so until I reach a certain threshold, when I re-apply I will be classed as a new claimant so I will be affected. So naturally I'm worried.

I suspect I will have to move and I'm used to my location, neighbours, being close to the shops, a safe and quiet area and of course I want to keep the Doctors I have always had.

I feel it just the same for those who survive with little security and have to decide whether to heat a home or eat well.

I feel it for those who have to work hard and hold done many menial but important jobs just to try and have income to keep a roof over their heads and have to watch every penny.

When the fridge/freezer broke down last evening and we had to send out for Fish and Chips, it really was a treat but if I was alone I doubt I could ever afford to order such a meal in for myself. What an example of life in 21st UK.

My Auntie used to wear a think coat and a woollen hat and keep warming up a hot water bottle to try and stay warm. Don't be surprised if I have to...

Its To Make Mum Comfortable...

That's what I see money for. As a friend said this morning in a PM its awful having to think about money when you have something far more important to consider...

I suppose I could've purchased everything today but to be honest the person left in charge of the store did not seem to know a great deal but I think I have decided on which washing machine,fridge/freezer(Both Hotpoint I think)tumble dryer(Not sure who makes it)and vacuum cleaner(Bissell)I am buying so I may go back on Monday and part with the money.

The tumble dryer because of the way you have to draw off the damp air putting it in to Dining Room is out so that may have to go into the passage that runs alongside the house for now.

I'm a bit concerned that the only space for the washing machine may be a problem, Washing machines are a standard size of twenty three and a half inches in width(Think that's around 60cms)

The space is just that, so its going to be really tight but what may mess things up is there is a piece of wood that supports a work top at the top of the space and that reduces hole further but it would be ok if the machine is not as tall and does not reach that piece of wood.

I'm also concerned if there is no gap around the washer to allow air to circulate and avoid the machine getting over heated.

It won't at the back because there is a large ventilation grill...

If that space is too small I am really thrown, why does something that should be so simple be so complicated?

Someone up in joinery might say I can remove that supoporting piece of wood as another piece runs along the back. But that doesn't affect anything. I'm not sure who I can call in...

I suspect by the time I've finished(and it won't be easy)I'll have spent close on £1,000! I should say it is easy to spend but not easy to find or afford.

Update:A neighbour says that if we remove the skirting board and that wood it will fit...just! It will be tight at the sides but we'll have an inch to play with at the top of the machine, then we have the ventilation grill at the back in the wall and another hole will have to be created for the pipe that the water drains away.

The same neighbour thinks we could put the tumble dryer in the dining room as long as we drape the pipe that takes water vapour away out of the window or we could go for a model that captures the condensation.

How Personal Should I Go And Betray Mum's Dignity?

Well, this blog has become quite raw and personal so should I stop now?

Annoyingly, Mum because she is eating again is(and I am no expert)having normal movements and the problem is that damn growth being in the way. If it wasn't for that Mum probably could go to the toilet as before but wearing those special pants ladies wear means there is less chance of an accident dirtying clotes and bedding etc...

Now whether the Dr seeing her wearing pants like this put him off offering treatment I don't know but I had to take the chance that it could happen hence the pants she wore at the examination.

I hope this not the reason she was refused chemotherapy.

I hope we can reverse that decision or get some good news this coming Friday.

I'd be so grateful if the diagnosis so far is wrong, I have now heard of examples where two or three tests were taken and it was found not to be Cancer. And it took the knowledge of a few experts to come to the correct conclusion.

Friday, October 07, 2011

If Something Is To Go Wrong...

I've enough on my plate worrying about Mum. We're in the process of buying a washing machine, tumble dryer as advised by the Social Worker and District Nurse. Our vacuum cleaner packed up recently and someone kindly gave us a second hand one last week and its packed up so that needs replacing.

I go out to the fridge/freezer and find its packed up. All the food has thawed. Its been repaired before and I'm not prepared to keep paying out on repairs, I'd rather have a new one.

I haven't enough room in the kitchen for another so it will go into the dining room in the corner and if there it will not have problems with temperatures as in the outhouse. I may put the tumble dryer in there too. We don't use the dining room and I doubt that I would if I was on my own.

I could order via a national retailer but I'll see if a local one on the town can supply all the above so tomorrow will be another busy day.

I've had look on their website and seem to have quite a range of goods and well known brands so I think I can get a washer, tumble dryer and fridge freezer(I haven't seen any vacuums but seeing what they do sell I'd be surprised if there isn't something there to suit our requirements.

Under the circumstances perhaps they may deliver everything tomorrow, if I get there early enough.

I cannot be bothered to claim on the insurance...the time it will take to do so and the premiums will go up.

For the first time(If I am alone I may not bother with insurance)the one time I don't I may regret the decision but we've never claimed in decades. And if everything was lost I don't have much in the way of anything worth replacing. Is it false economy?

That Was A Busy Day...

What's the saying about you can't live with it and you can't live without it!

You don't have to have much money before you are penalised but equally it is hard to get into a position where you are comfortable so you do not need to ask for help.

In this day and age when so many are struggling the threshold on the savings people are allowed is too low.

Sometimes, a small nestegg looks great when you see all those zero's but in reality if you live a reasonable life with little luxury it would soon be used up.

I spent a couple of hours discussing finances. It had to be done. It was made much easier by the attitude of those on the other end of the phone who were probably genuine but if not, at least they have been trained well how to react to what they hear from callers who often will be distressed.

It was quite straight forward but you feel as though you are in a dream talking about someone close to you and their demise, its unreal.

Its not knowing how long Mum has, we may end up paying much more for Mum's care, we may find if we do not delay, we are entitled to more help financially, we hopefully will not be worse off. I don't care if we're worse off.

Mum is the priority. I hope anonymous and anyone else realises that and money is not my God.

I'm getting more worried as the date of our next hospital appointment draws near.

For now you can pretend everything is the same and little has changed. But we know that it has...

Its ironic when I say we don't know how long Mum has...none of us do(I don't)but the difference is that in our situation the Consultant will probably estimate and suddenly we will have an idea.

Thursday, October 06, 2011

Mum Seems More Troubled Than Usual...

But I am making a cup of tea for her so hopefully she'll come around.

On the other hand, Mum must be putting on weight again as the other day when I put my arm around her I could really feel her ribs but a few minutes ago, I cannot feel them as I did before.

I hope that is a good sign...

Now We're Getting Down To The Nitty Gritty...

Tomorrow they will quiz me over Mum's finances and savings...this can apparently be done over the phone...I hope that I have all the answers that they require...I told the Social Worker the other day...

When possible I am withdrawing money to pay for the extra heating costs(Mum's cold)so the heating is on virtually 24/7.

I will consider(If I am allowed)putting towards things I really wish I do not have to but also that washing machine and a vacuum cleaner.

Extra bedding and cleaning costs etc...and who knows what else I have yet to factor into the equation and we don't know whether we have long or it will all happen very quickly. She is so thin.

I hope that I can feed Mum with the best of food whilst she is able to eat.

She's just had Lentil and Bacon Soup and Mum has said that she would like to try a jacket potato with grated cheese and some small Brussels sprouts(She managed half of that)

But we still have a Complan to have later and possibly some Baked Beans...Just want to get something on her tummy.

Finally, No matter what the nurse/nurses do and the care offered supposedly to make my life easier to give me quality time with Mum...I am the primary carer and I do it because I love my mum.

And today even if Mum had the full care of the carer(Blanket bath, creamed all over to make her skin soft and cleaned to make her bottom less sore)

Twice today I had to clean Mum up and wash her, wash some bedclothes. So some of the work the carer has done has been redone by me. That's no one's fault just the way it is.

And very soon I will be keeping Mum company again for most of the night.

You've Heard Stories Where...

Someone has a cleaner that keeps a home tidy and before the cleaner arrives the home owner has a tidy round so it doesn't look as bad even though that's why you have hired a domestic in the first place...

Well, I'm the primary carer for Mum but in time as the disease takes more of a hold we will be given more care but for now its one visit per day or as arranged at present, alternative days...

So any work this carer/nurse does for now, it could be as this morning, I've already cleaned Mum up and done in reality what she's coming to do minutes after I have done what she's going to and its likely throughout the day I will be doing so again. What she does here at 9.30am isn't going to last until the next visit.

So at this minute I'm not sure what we've gained by asking for or being given so called extra help.

I know the idea is good and in time we'll need extra help and be thankful of it so I'm not knocking it but...

I promised to get a washing machine in and the Social Worker and District Nurse said its a necessity but with extra bedding and the amount of time in reality spent washing, I think I can manage as I am and it doesn't take that much time out of being with Mum. They say time gained using a washer means more time with Mum and quality time at that.

When the time comes and its just me, I have very little to wash so I probably will find it just as easy to hand wash a couple of shirts and an odd blanklet so I may never turn the machine on so it will be an expensive gadget just sitting there...doing nothing. So I'm not so sure whether to order one or not.

The best thing about a washer might be using it not for blankets but towels which are thicker.

Update:Mum's got away with it today but on Saturday she is getting a full bed bath and creaming of her skin and so I have to get supplies in later today or tomorrow...a washing bowl, dove moisturising shower gel, towels, face cloths and the like. Whatever time Mum has we must keep her comfortable and give her quality of life.

Oh how I pray for a miracle in a week's time when we go back to the hospital for the results, hope is all it can be.

Our carer was booked for an hour and stayed approx 30 minutes today(if Mum says no you cannot force her to have care but Saturday will be different I'm sure)

I've purchased or got together some bath sponges, some shower gel that lathers up nicely, the carer thinks its better than soap etc...(I wanted Dove)but had to make do with Simple which I am told is also good. A kind of hand bowl, many hand towels and face cloths and I have some bath towels that I think are suitable.

I'll be watching because I may need to copy this myself later.

I've already seen how to apply barrier cream and managed that ok.

Wednesday, October 05, 2011

Minimalistic Life...

I can see my life being very unmaterialistic.

An Avon book was popped through the letterbox a few minutes ago...I could see from the book cover it was full of Christmas goodies.

I caught the person and gave it straight back. I'll not be buying anything Christmassy. Besides, when what I fear happens, most days will be the same. If I buy anything who am I leaving it for?

I can quite understand for many, why Christmas which is very family orientated is a sad time. If have you have no one to share it with and perhaps you remember happier times when you were a child or you had family. But no my sadness does not mean that others should not experience the joy chritmas brings to those who see it as a holiday and not for the religious reasoning behind it and likewise those who do have a spiritual calling.

If I can keep interested I think my sanity of mind will be mainly kept alive from being on the Internet, reading a book, listening to the radio and music and if I can still manage to motivate myself to cook something nice to eat rather than sticking to soup, baked beans and cereal(all fine)and can afford to. I'm not sure what else I need.

I have a feeling that I may sleep more(I think many who live alone)or as often happens with single older people, they tend to stay up through the night and go to bed during the day and have a kind of reversal of how many live their lives.

I wonder if I'll try and have a pet for company. But its something to be emotionally attached to and again it will be painful when you lose them. Also, I believe my Housing Association isn't too keen on tenents owning animals so it may not be possible anyhow.

And once again you have to factor in giving your pet the deserved time and attention and the cost of vets bills and food etc...

Am I Doing The Right Thing?

Feeding Mum and building her strength up?

In one way I assume that if Mum isn't wasting away she has something to fight with, isn't so weak which may please the consultant when we see him.

Then again am I by building her strength up feeding the possible cancer that she has within...

Perhaps I am imagining it but even after a few days of adding full bodied milk in her complan and getting some solid food into her I do think that Mum is putting weight on again. I thought when I held her that her ribs were not as easy to feel.

Some days when I wake everything seems as it should be and has been for as long as I have known. Then it hits home and the worry and depression hits again my stomach feels all knotted up again...

You wonder what each day will bring...

I do know that I will struggle financially contrary to what everyone keeps saying. I am constantly told that you'll be ok and you will manage and be taken care of. I still think I'll have to go careful on what I eat, whether I heat the house, I will have to pay for my medicines. Can I afford for my garden to kept tidy? I may have to see if I qualify for the local authority to do it and if they will, is it free or will I have contribute towards the cost?

On a less selfish note, the carers arrive tomorrow morning at 9.30am to see Mum. Still not sure what they will do.

Mum is brighter today but it doesn't help knowing what's coming. Any death is a shock to those who are left behind but if someone dies in their sleep or suddenly its better for the person themselves. It's awful when you know you are dying or your loved one is and its always there hanging over your heads or there in the background.

Still mixed up whether to push for possible Chemo or take the line the District Nurse keeps pushing that you want quality time and as much time as possible and chemo may just make Mum feel ill and only offer weeks and months, and its a lot to put her through, if its as slow at taking hold as has been suggested we may have longer than we think to be with each other(I hope)but of course Mum has not had a any scans or x-rays and we don't know if they'll be offered.

Its really, really difficult. And I know that I am not alone, that many families have had or are having similar experiences.

Its probably natural but I am going through a period of thinking do I want to continue myself after I lose Mum and what is the point of it all. But its not as if I can determine how long I have, that's out of my hands and I am not contemplating suicide. So don't worry about that. But I may worry how the next twenty five years will be and I may not be here as long as that myself.

This all brings back memories of a period in my life when I was very young and I became very clingy of my parents and needed a little bit of help from our family Dr as I was worried about losing my parents, only now this is for real.

Tuesday, October 04, 2011

Is This Really Happening...

I don't think that Mum is strong or will last long enough to attend her next hospital appointment for her results. We may be surprised and with plenty of care from nurses in our home and making her comfortable Mum may surprise us all. She is very ill, I thought I'd lost her a few times in the night with shortness of breath and times where she went quiet all together.

We may need a Dr to give some drugs or treatment.

I'm debating whether(even if the District nurses/social services are involved whether to contact some of the volunteer support services around as well or instead of depending on the District nurses or Social services. Its all new to me. We have the Macmillan Nurses service, Marie Curie Nurses(both are charities)and a couple of hospices in the area(one I believe even comes out and does home visits)and when times are really tough some of these organisations sleep overnight with the patient.

Its all new to me and I am learning as much as anyone. Mum still wants to stay in her own home. If I can grant that wish I will and she wants me to be there.

Its like living in a dream, more so because of the speed everything seems to have happened.

Hopefully, I'll know more after this afternoon...

I cannot imagine what Mum is going through but I don't feel like eating or drinking, my mouth is dry, I have a lump in my throat and stomach is all churned up. I want Mum to be with me of course I do but I don't her to suffer or be here longer than she can bare. At least she will be given drugs to ease the pain and eventually help her drift into a peaceful slumber.

Update:Well, the Social Worker called. What a lovely lady and she gave us both so much of her time...I talked her ears off.

We've initially come to the agreement that Mum will have care alternative days but as she gets worse or feels comfortable with having a carer, we'll increase this to perhaps every day.

We have to pay...the rate is £10 an hour but depending on how long it takes to do the tasks required will decide what the cost actually is.

We've also managed to get a nice time for the carer to call...approx 9.30am-10am so its not too early.

It appears that whoever we owe the money to, do not care whether the money comes out of savings or is paid another way as long as its paid.

I also feel much happier regarding Mum's meagre savings and what I am allowed to do when managing it on her behalf whilst she's here and if I come into any that remains, I will not have someone standing over me watching every penny that I spend.

I need to make Mum's time more comfortable, but the Social Worker said that I need to bring the house up to modern standards for my own comfort too so I have a decent life ahead, so I can spend it on furniture, carpets etc...and the items expected to to have a decent standard of living like replacing or buying a vacuum cleaner, washer etc... So I feel so much more positive about "Our" time together and my own future.

But I so wish this wasn't happening.

If/when I hit a certain threshold I will be entitled to help again...

Been trying to build up Mum's strength again, today she's had two complan meals made up with full bodied milk, a small meal with a fried egg(In olive oil)and concentrating on the yolk, spaghetti hoops and chicken. Pureed banana with milk. And later she had some toast with marmite and a small chicken sandwich.

Again whilst she can eat and get nourishment out of food(one day it won't be possible)I am determined to do what I can for now.

And some friends are giving hope that Mum might/should be allowed chemo again having been told otherwise and that we still should press for the chance and not just accept what we have been told already. Even pushing for a second opinion. Not just because great strides have been made in treatment and how its used but they can get it wrong and even if correct some people do respond.

Monday, October 03, 2011

Trying To Build Up Mum's Strength...

I might be imagining it but I thought Mum was starting to put on weight today.

It could be the transfusion still having an effect but I have heard that to eat a few small portions of food throughout the day can help but also I am making the Complan with Full Bodied milk(not water)and I have heard it helps to add it to thick soups too. I don't think she'll eat milk puddings because she hates porridge and rice pudding etc...

I am trying to get some small amounts of items that have vitamins and protein such as a little chicken etc...

Tonight it was the inside of a chicken and veg pie. Ok no pastry but there was chicken, peas, carrot and gravy. Its always something on the stomach.

We can but try...