Dying of bladder cancer - what to expect?

[MyDadIsTheGreatest]

My 86 year old dad was diagnosed with "aggressive" bladder cancer in April and told he had 6-12 months to live. We've not been told what stage the cancer is. It has spread into the lymph nodes but not to his lungs. He had no symptoms and is generally fit & healthy (goes out for an hour's walk most days).

Since then he's had radiotherapy to reduce the speed of progression (not to get rid of the cancer). The side effects of the radiotherapy have subsided and he has a review appointment in a couple of weeks' time. He's been told he won't be given any other treatment.

What might we expect to happen from this point onwards in terms of symptoms?

Is he likely to get symptoms which get worse, or might he just keel over one day? Is he likely to end up in pain? Is he likely to need help like personal care or nursing care?

I’m so sorry you’re going through this. You need to go to the review with him if you can and ask for referral to MacMillan who were very good when we needed them. Your dad’s GP may also be open to talking to you about your dad’s care. I went through a terminal cancer diagnosis with my mum recently and the above was where we became more informed. They are unlikely to give you a break down of likely events as everyone is different.

I would go with him to the appointment and take a notebook with the questions you want answered. Some that might be helpful to you:

Who do you contact if you need further help/advice down the line?
How would you arrange carers if it is needed later?
Do they have a macmillan service?
Do they have palliative care in the community?

From a practical point of view- does he have a DNAR? Does he have a will, do you have power of attorney sorted? Do you live nearby/have siblings etc? Is the place he lives practical for end of life (stairs/downstairs loo.) It’s a lot to take in but I always think forewarned is prepared. Sympathies on the situation, it’s so tough.

My Dad died of this recently. He went from healthy enough to loosing interest in food and becoming very tired exceedingly fast after being given the news of his illnessbeing terminal, exactly like his doctor said would happen. Initially he had some pains but once we got involved with the hospice they took care of all of that for him. Dont delay in asking for help, and dont wait till it gets sore or painful. Have you got an LPA?
Your Dads doctors surgery is supposed to coordinate your dad's care if I recall, inform them of your dad's diagnosis

Ask for the calorie drinks as soon as your dad goes off his food, theycan be very useful. If your dad rapidly loses appetite, feels sick or seems agitated or confused, dont freak out and panic, it could be high calcium levels which are caused by some cancers. google high calcium levels and keep those symptoms at the front of your mind. Its treated fairly easily via drip at the hospital, but it is an emergency .
Im so sorry you have to go through this too

Get in touch with your local hospice if you have one, I would not like to have coped without our one

Get a hospice involved. They’re fountains of knowledge and give superb practcal advice, and real
help.

Sign up to macmillan on-line. There will be a section you can join for bladder cancer. Good luck !

Thanks for the helpful replies.

My brother and I have power of attorney for health stuff, but not financial so that might be usefulto organise. His will is sorted. My brother is going to the review appointment - thanks for the suggestions of questions to ask. Unfortunately we both live 3 hours' drive away; my brother has a busy job & family and travel is really difficult for me due to caring responsibilities for disabled DC.

My dad has actually become suddenly unwell in the last week with constipation and what seems to be nerve pain in one leg. No idea if it's cancer-related but we may need to put some domestic help in place as it's affecting his mobility.

@BiteSizeByzantinethanks for the suggestion of calorie drinks. Do you mean ask the GP for them? This might well be helpful. He lost appetite during the radiotherapy and I should ask about whether he's managing to eat normally again.

Dont delay with the financial LPA, if your dad becomes confused you will need it to pay his bills and things like that. Does he have a wife or a partner?

Yes ask the doctor for the drinks. Constipation can be a side effect too either of the drugs, the cancer or stress.

What area of the country are you in? For us, St Christopher's Hospice workers sent a lady out to write down everything my Dad might need then, made it happen so we were very lucky. Things like Attendance Allowance, a blue badge, contacting occupational health to have grab rails and a bannister.

Your Dad is likely to become very frail and confused so organise his care package now. Think closely about meal prep or delivery or a carer that cooks. Possibly a cleaner. This type of cancer will sneak up on you FAST. Our heads were spinning with it all.

Oh and call age uk for his area and explain the situation, you can do this for your dad. They are very helpful at sign posting

Thanks, that is really helpful. He is in Peterborough (Cambridgeshire).

I can’t give any better info than what’s already been posted….but just want to say I wish you all well. Cancer diagnosis affects the sufferer, family & friends-hope you can all stay strong at this time.

This will of course be a difficult conversation but needs to happen. Where is his preferred place of death. I know it seems morbid to discuss now but its worth having now when its not urgent and he is well enough for the conversation. I think a cleaner is an excellent idea. You can even employ a carer via an agency or self employed who will clean, get shopping in, pick up prescriptions, change beds

From personal experience this is excellent advice. My dad died some years ago now but he wanted to come home but in the end wasn't able to as my mum didn't organise it / couldn't face the reality of it.

Thinking about this now is so important as if it's left too late he will likely die in hospital which is not an ideal environment.

I would get on to social services. They were excellent for us, generally signposting what help we could ask for, providing lists of vetted cleaners etc.

we got carers 3x a week, and paid for a cleaner to come and generally keep on top of things.

macmillan for us were worse than useless, we had to ask them not to come back.

if you want end of life care at home it’s Marie Curie nurses who provide that service.

eta a lifesaver for us was a “companion” lady. She would come and sit, play cards, take trips to garden centres when well enough etc. gave us a break, kept quality of left going so it felt less like waiting to die. I post in particular as there was recently a lady on here musing if she could do something similar and got knocked back, mumsnet style.

In terms of finances, some banks allow you to be added as a trusted person without POA. Barclays did this for my dad and were very helpful.

Sorry for your sad news OP

Most palliative care and nutrion teams now advise that the prescribed calorie drinks aren't used when a patient is heading towards end of life care. It's a different situation if the goal is nutrition to aid recovery while someone isn't able to eat very much.

A reduced appetite is part of the inevitable decline. The drinks are ulta processed and taste pretty vile and it may be better to focus on the person eating and drinking a little whatever they fancy and get enjoyment from rather than trying to maintain balanced calorie intake.

Some ways to enrich normal food are discussed here www.bapen.org.uk/education/nutrition-support/nutrition-by-mouth/food-first-food-enrichment/

Its the bit beforehand, that the drinks are useful for, when someone is hungry and feeling weak but cant tolerate food for whatever reason.

https://www.ageuk.org.uk/cambridgeshireandpeterborough/about-us/contact-us/

Phone our Helpline:
0300 666 9860
Or email [email protected]

Explain the situation and they can possibly help. They'll make your dad a profile so he can call too and theyll have his notes on screen.

Great idea: thanks for that suggestion.

My dad has actually become suddenly unwell in the last week with constipation and what seems to be nerve pain in one leg
@MyDadIsTheGreatest Has he mentioned this to his cancer team? I only ask as my aunt had the constipation and didn't tell anyone on hers (lung cancer) until it was too late. She thought it was due to her medication.
I wish you all the best helping your dear dad navigate what he is going through 💐