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My Mum. She's dying, she doesn't know - or does she? She won't go for confirmation, tests - nothing. We know though. Biliary cancer? Liver cancer? Primary or secondary? We will never know. What we do know is that she isn't expected to live
She is, in her own words the other day when I was trying to convince her to have a recliner to help her increasingly swollen legs - 'Cussed awkward'.
'I know I'm being cussed awkward, but I'm not having one of those chairs, they're for old people'.
Trying to deal with my mum and pinpoint problems is like trying to figure out how to 'remove' puzzle pieces so you can pick apart one picture from the other. She has dementia, depression, high blood pressure and wonky knees that have packed up completely.
The dementia was a shock for us all, that wasn't expected in any way, shape or form. Least of all by her, after diagnosis she ended up back on the ward because she just got so very low. Low enough that we couldn't cope with her being at home anymore.
She recovered (ish) and went back home with a full care package x4 a day. They give her meds and meals - and things sort of settled in a groove. I do her shopping, finance and cleaning. It was all jogging along really.
Then came the weight loss, despite best efforts. High calorie shopping from me, the carers became total and unrelenting pushers of biscuits, meal drinks were prescribed and she was checked for thyroid and diabetes etc. Nothing was found and it was put down to her depression/dementia/'we're not sure'. Then came the tiredness, again she was checked and nothing found and again it was put down to age/dementia/depression. Then came the intermittent diarrhoea, which she was forgetting she was having but, due to her poor mobility the carers and I were finding evidence of it everywhere. After a while it was clear it wasn't a tummy bug.
And that's where it's all gone wrong. Full bloods including LFT's were ordered and I get a call from her GP. Her LFT's are way out, with one factor being 3x normal. Apparently this isn't good at all, I need to speak to my sister - it, along with her other symptoms, indicate a malignancy. What do we want to do? (!?!)
My sister books an appointment with him, we need more info, we need to know what's going on.
He gets the graph of LFT's up to show us, it looks like the graph has had to be extended to accommodate how high one of her levels has gotten. He's not hopeful, he only ever talks about investigation, never treatment. He knows she isn't going to go for anything, he knows we haven't been able to get her out of the house for over a year. The district nurses have done all her bloods as I can't get her to go with me....and in light of that he tells us, with her symptoms, with her bloods and with the fact she won't agree to treatment, we're looking at 6 months.
Wow, just....wow. I'm not ready yet. I'm only 34, I've got a 4 year old! I know she's got depression, dementia and wonky blood pressure and legs but, I'm not ready yet.
So, we agree that we put the idea of investigations to her, see what she says - which I do.
'Mum, you know you've had that diarrhoea.....'
'Oh I haven't had that for ages.'
Well, anyway, you've had the diarrhoea and the doctor got your bloods back and they're a bit 'funny'...
'What do you mean funny? Bloody doctors, they just worry you over nothing.'
'...well, I'm not sure but he's worried enough to want you to go for an ERCP.
'...well, they'll sedate you so you feel really relaxed and then they'll put a camera down your throat to see what's happening.'
'I am not having that done! I am not being buggered about with any more! I don't want it, I can't...I don't feel up to it. I am not having anyone bugger about with me. No.'
'What if the diarrhoea was bad mum? What if you started feeling really poorly?'
'No, never. Is there another way?'
'They could put it up your bum I suppose...'
'Oh my God! That is never going to happen E! I don't want messing with at all, I want to be left alone.'
And that's it. We will never know, she will never leave the house. No one, my sister, the GP or I want to scare her as when my mum gets low we aren't talking a bit down, we are talking admission and we don't want her to spend the rest of her days in a mental health ward. She's settled now, she's happy (ish), she feels safe, things are regular - this would frighten her to death, most likely quite literally - to death. The chances of it being operable or treatable are slim - so in effect, what would confirmation do?
Now - here's my rub...I'm a do-er, a planner. I cope by getting busy, always have. I can't do, or plan or fight - nothing. I'm watching my mum get more frail - she's doing this weird thing of stabilising in weight now, but looking thinner, more gaunt, more browny, yellow - which I hadn't noticed before. If I did think about it I always assumed it was her 200 a week cig habit turning her that colour - dismissed it. She was just turning the same colour as the decor. Are the tumours weighing more and that's why she's looking thinner but not losing? Is she filling with fluid?
I'll never know. neither will she and neither does she want to. We have to just wait and hope she 'slips' as opposed to obstructs and needs emergency care. She's in no pain, we just have to wait. Just - wait.
Im so sorry this is happening to you and your Mum.Not a lot I can say otherwise.HUGS xxxxxx
My father has chronic depression and has just got through non hodgkins lyphoma treatment. He spends most of his time sitting and we got him one of those IKEA bent wood arm chairs. Good back support, easy to clean cushions and good arms to help him get out. It comes with a matching foot stool as well. The good thing is it was cheap and looks modern, infact everyone has them. Not just old people.
We also bought a revolving one, but my mum won't let him use it as she likes to sit in it!
You sound like a good, caring daughter. xx
It's a terrible situation your Mum / all of you are in. I hope your Mum is able to be as comfortable as she can, you seem to be an amazing help, which she is glad of.
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