Stage 4 bowel cancer

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Scrabble96

Dad's FOLFIRI stopped after one cycle - he thinks he's ok, but he's not

My 91-year-old Dad - who is now living permanently with me - was recovering well from his Hartmann's op to remove a T3 colorectal tumour in early March, but it was reclassified as T4 with liver mets and several infected lymph nodes a couple of weeks later. He was deemed fit enough for a six-month course of fortnightly FOLFIRI cycles but after the first cycle things went rapidly downhill: swollen legs with a rash, a tongue ulcer, cognitive problems, urinary incontinence and such a great loss of muscle strength that he could barely walk, never mind get up the stairs, which he was quite capable of doing three weeks ago. He no longer seems to realise he has cancer, asking me, whilst staring at bank of Macmillan leaflets yesterday, "what is it that they think I've got?". A few days earlier he'd had a letter from the oncology 'Navigator' and had written a comment on the envelope saying "some emphasis on cancer". He queried me about it and I said yes, that's right and he asked me "Have I got cancer?" so I had to sit him down and talk him through the last six months, explaining that his chemo was palliative only and would not cure him. We went to the day centre for his 2nd cycle but the nurse and doctor were not happy with him and decided to postpone it a week until after he'd seen the consultant. It would have been tomorrow.

Not surprisingly, at yesterday's appointment with the oncology consultant we were told that the chemo is probably doing him more harm than good and that a better quality of life would be of most benefit to him at this stage.

The problem now is that I believe Dad thinks he's ok. In an email to friend a few days ago he said "I think it very unlikely that this battered 91-year-old will ever be really healthy again; indeed a whole lot of new treatment is threatening me very soon!" but after the meeting with the oncologist wrote again with "I may have been too quick or too pessimistic in recent communications. I had quite a long interview with a specialist in the local hospital yesterday afternoon. He had read all relevant reports on my health and prospects, and was adamant that the best thing for me was to get out and about and join in social meetings, go to concerts, etc. So it looks as if my activities will be a lot freer and more frequent."

We don't have a prognosis of how long he does have left without the chemo. The liver mets aren't making themselves felt, yet, although his serum alkaline phosphatase and GammaGT readings are rocketing. There will be the results of another CT scan in about three weeks (they were looking at his thorax but did abdomen and pelvis as well) which should give the consultant some idea.

My question is: what do I tell him, if anything? His memory is very selective and he has other cognitive problems (he said there was a badger in the garden a couple of days ago; it was a squirrel!) but he hasn't been diagnosed with dementia. Do I tell him he's only got a few months to live, which is why the consultant said to make the most of his time, or wait for the Macmillan nurse, when we get one, to tell him, or just wait until he starts to feel really poorly and take it from there?

Hismom

I suggest you don’t disagree with your Dad. It does sounds similar to dementia moments . In dealing with dementia type issues, it’s always best to go along with whatever their thoughts are at that moment.

Gentle slightly guided conversations are best.

Liz Blakelands

@Scrabble96 Your Dad is 91 and if he thinks he is fine then he is. The important thing is that you both enjoy the time that you have left together, it doesn't matter about the length of time, it is the quality of the time.

My mum had dementia and I although found it best to just go with the flow, easier for my mum and easier for me.

Also with or without dementia anyone of 91 will have most likely considered their own demise at some point. I think your Dad has made the decision to just get on and enjoy the time he has left.

All the best
Liz :x::x:

Scrabble96

Thank you, @Liz Blakelands, although my Dad was hoping to reach 100 (his mother did) and because that is the 'expiry' date on his bus pass!

But it will be much easier to have quality time together without the chemo. :x:

Scrabble96
Quote from @Hismom:
I suggest you don’t disagree with your Dad. It does sounds similar to dementia moments . In dealing with dementia type issues, it’s always best to go along with whatever their thoughts are at that moment.

Gentle slightly guided conversations are best.

Thanks, @Hismom. You're right. I will go with the flow and try to relax with it, too.

justturned50

Your dad's way of writing sounds very eloquent and articulated if not wholly accurate. I think infection and illness can cause people to feel muddled. It doesn't have to mean he has dementia does it? My grandmother is nearly 93 and became quite muddled and physically infirm each time she had a UTI. With regards to what you tell him I think the Macmillan nurse will be a great help. It's really difficult. In our house Cancer is always there; either causing physical difficulties or conversations. There is no freedom from it. We are just looking for the light and the little breaks from it- being in the garden, watching a film, talking about school etc
Hope you are getting on ok @Scrabble96 and I think @Hismom , you are right gentle guided conversations are best :x::x:

Scrabble96
Quote from @justturned50:
Your dad's way of writing sounds very eloquent and articulated if not wholly accurate. I think infection and illness can cause people to feel muddled. It doesn't have to mean he has dementia does it? My grandmother is nearly 93 and became quite muddled and physically infirm each time she had a UTI.

My Dad - a former college lecturer - has always been good with words - he even helps me with Wordle which I've just introduced him to - but he really struggles with recognising things (hence the squirrel/badger mixup), and even asked my husband what a tea towel was used for the other day. He's also struggling with coordination such as picking things up, getting his feet in the right place to put into his sandals, pulling up his pants and so on. When we were walking the other day he stopped at a doorway and when I asked him what the problem was he said he couldn't remember what he was supposed to do.

He did have a UTI a few days after the chemo but that was zapped with a five-day course of a very strong antibiotic (Ciprofloxacin) and I've making sure he has plenty of fluids. His urine looks a normal colour now, but he's still struggling with swollen lower legs and feet.

I am trying to hold it together, but it's not easy. Fortunately, my father is not difficult as some elderly people can be and is quite willing to accept help. Too willing, sometimes. I think he'd like me to do everything for him but I want him to do as much for himself as he can while he can.