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...
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...
posted by The Great Gildersleeve | 6:28 pm
5 Comments:
I don't understand why your Mother hesitated over signing the form for the radiotherapy, and didn't really want a blood tranfusion, I thought she wanted to keep going. Please just try & count your blessings, and stop being so negative . They can't find cancer any where else, they're going to treat it by the only way possible for a woman of your Mother's age & they've told you both your Mum will die of old age before the tumour kills her. There's no point in looking up side effects, or thinking about going private .
I've been reading some of the blogs on the forum you directed us to, one poor woman in her 30's with terminal bowel cancer & three small children, now there's some one who should really feel sorry for herself !
I'm sorry, but you're coming across as saying "Yes but & poor us * Just be grateful that if you were living in a country where you were old or couldn't work, you'd get NO medical treatment, so you'd die ! I'm sorry to sound harsh, but there's millions of people a lot worse of than you & your Mum, so please try & stop feeling sorry for yourself !
Also, why do you have to go with your Mum every day when she has her treatment ? have they said you can go the first time ? I'm sure if you're allowed to do that she'll be fine for the rest of the week, there'll be lots of old people in the same position as her, without relatives to hold their hand .
I think you'd get more positive responses on your blog if you weren't so negative . I'm not going to say any more on your blog , because I'm just getting rather impatient with you.
Fine...I have had more positive responses than negative. Especially private messages. I am quite upbeat but I think all my thoughts are what many will feel and think and I/we are one of many thousands who face this kind of situation every day of the week, every year across the world.
I did not look up side effects and I don't expect/hope Mum doesn't experience all or some of them. A Dr has to point out the worst case scenario.
I am reasonably happy with the scan results too. It was the Dr who wished he could give us better news.
Why did Mum hesitate to having treatment, who knows. We all react differently. Perhaps she doesn't grasp how serious the situation is or views change from one day to the next.
I don't think its unreasonable for elderly lady to want someone who is her nearest and dearest to be with her.
We are fortunate in this country as you say...please God it remains that way...
And of course the example you give anyone would have difficulty not to agree with you and I am sure there are so many cases which would be as deserving and pull on your heartstrings and emotions...
Two things come immediately to mind, Gildy.
1. None of us knows when our time will be up so it's as well for all of us to live one day at a time and enjoy what we can.
2. Are you sure that you can't travel in the ambulance with Mum. Have you actually asked?
Both are very obvious points but sometimes the small things are overlooked when one has so much on ones mind.
One thing is certain. Your mum is very lucky to have you.
Thank you VQ,
Until Mum became ill I did try to avoid looking too far ahead and I did very much live in the present.
If Mum had not asked about what she did we were none the wiser and she probably would've lived as long as she will now we do know.
Were we better not knowing? What's that saying about letting the Genie out of the bottle...
There are still a lot of positives...the scan was better than I thought it would be but then that suggests at this minute the only problem is the growth we know of. So it would be great if the Radio Therapy shrinks or kills it altogether.
Or...they could remove it if it really reduces in size. And if I can get Mum to be seen not as weak.
So they may reconsider.
You are so right about trying to enjoy what we can.
I think all my thoughts will be experienced by many in a similar situation. The difference is that I have put them down in a blog which is similar to witing a book, a diary, a letter.
The Oncologist said he could arrange an ambulance to take Mum to and from the hospital but I could not travel with her. If we use the service I suspect she will have to hang around for ages before and after the treatment until one is available and it will be like a minibus carrying a few people at once.
I'd like Mum home as soon as possible so she is not stressed more than she needs to be.
I even thought of us staying in a local hotel near the hospital to avoid travelling daily.
I have someone looking into whether we can use a kind of volunteer car service(approx 10p a mile)or if I can do a deal with a taxi firm as its regular business...
They reckon a taxi one way will be approx £25-£30.
When Mum had her hip operation I spent £900 on taxi fares and we were only talking of a trip of 7 miles to the hospital and home in the evening!
Nobody so far except anonymous has thought it unreasonable for Mum to have someone familar with her especially if she is seen as being vulnerable.
Today we had a kind of phone line installed in case of an emergency with Mum.
Someone else is going to get a backrest for Mum's bed and a special cushion to make her comfortable and a special seat so she can be lowered into a bath and have a proper bath which she hasn't had for maybe two years.
We may even hire a stair lift to make it easier for Mum to go downstairs. I'd buy one but not knowing how long Mum has hiring may be a better option.
If we are awarded some extra financial help which most think we will be successful...I believe 7 weeks of that will pay for the annual cost of the stairlift.
So the support is there seemingly in our own case.
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