Probable terminal cancer & refusing treatment

[InTheFamilyTree]

My Dad has never had robust health, heavy smoker and mental health problems meant he has been socially isolated for years.

It has become apparent that he is very ill, seems to have crept up in the last couple of years unnoticed. So many symptoms like low appetite etc were things he would have periodically, some of which I thought were a somatization of his mental state.

However my mum (theyre separated but friends) is looking after him, and reports that he's not eating food, getting weaker but is refusing to have a colonoscopy, cancelled the MRI etc so we have no firm diagnosis. Testing a BM revealed high fecal elastase, and the family suspects pancreatic cancer, but dad who has little faith in authorities and rarely accepts support, is just fading away.

Anyone been through similar? Were having a hard time accepting it because atm there is so much unknown. It seems he has a short time left, but then might have a brief burst of (relative) energy.

Thanks for reading.

Thanks for responding @CrazyNeighbour

You are right, I think this must be what he wants, in that he is an adult who chooses to withold consent from treatment. This is his choice of course but makes me sad in that the decision seems to come from fear rather than being an active choice.

Talking with family last night and plan to go and visit shortly. Its hard as a live 2.5 hours away and have a young family, so can't be there as much as I might like. Would be great to have heart-to-heart and a chance to say things long overdue, but somehow I don't think it will be like that.

My mother refused testing and treatment for cancer but at the end she did accept some palliative care, i.e. especially pain relief. I relied on the co-operation of the drs to put that in motion despite not having a proper formal diagnosis by the usual standards. (We had already nursed my father, with terminal cancer, who had very little treatment because of my mother.)

I accepted that it was what she wanted (it did also cause some difficulties with some medical staff) but it is difficult for carers as there is a point where some kind of medication/help becomes necessary. If you and your mum haven't already - contact Macmillan to discuss the situation.

Hi @InTheFamilyTree
Firstly I'm very sorry to hear you're in this situation
My mother had bowel cancer and at the time of diagnosis it was already stage 4 so I totally understand how you're feeling.

I had a situation whereby Mum didn't want to discuss it she hoped for treatment but was only suitable for palliative radiotherapy.

It all came to ahead when she was in agony one day, an ambulance called and she had an emergency stoma operation but that only gave her another 3 months.

I would phone your Dads GP and get the district nurses on-board, mention the word "safeguarding" and say he's had mental health concerns and you just want the best.

Our district nurses, Marie Curie, Hospice at Home were amazing - which area are you in?

Sorry to hear this.

If pancreatic cancer then he won’t have much time left.

Has anyone sat down & actually spoken to him?

So sorry he’s in this situation. If it is pancreatic cancer then it’s likely that treatment would not be effective anyway. My mum had treatment for a different kind of cancer and it did give her some more time but I wonder whether it prolonged her suffering to be honest - the end for her was long and it made me realise that there are things worse than dying sooner. It’s so difficult but you’re right that he is an adult and it really is his decision, even though that can be so hard to accept. Hugs to you x

My mother had breast cancer and after the first time of taking all the treatment she said 'enough' and opted to die from it. It was hard, but it was what she wanted and she died at home. Sending hugs.

Thanks, it means a lot to know other people have faced, or are dealing with similar.

Mums in the process of contacting MC snd Macmillans, I may do the same too. Thanks for the tip about District nurses, will let mum know as she's local and has dealt with dad's GP.

I know the prognosis for pancreatic cancer is really poor, but of course atm were just making an educated guess. Part of me is in denial too, and holding onto the idea that it's not cancer, it might be curable... But then hear that he's not been eating food for the last week. Hard to retain the sense of urgency or gravitas when he is just trying to carry on as normal!

Plan is to visit this wkend, which is the soonest I can get there, and then take the kids to say goodbyes.

Good question @naturallyred! Mum who is his main carer is quite reluctant to ask him these things, though did ask him about will the other day. Think it will be up to me to have this conversation with him.

When talking about the baby I asked if he thought he'd be here in 6 months, said he didn't know.

It has become apparent that he is very ill, seems to have crept up in the last couple of years unnoticed. So many symptoms like low appetite etc were things he would have periodically

Pancreatic cancer though, by the time you see symptoms it’s usually already terminal. The fact he’s been unwell on and off for years would point me toward something else. The people I have known with PC have had less than 6 months from symptoms.

Having said that, if he won’t accept any diagnosis or intervention all you can do is treat his symptoms to make him feel better and help with pain.

@InTheFamilyTree
If it was me (and this is merely friendly advice) I'd take some time off work and get there before things potentially progress.

I don't wish to alarm you but in my experience with both my Grandmother and Grandfather, Great Aunt and also my younger cousin things moved quickly.

Once a patient is Stage 4 things can progress very quickly and if they have to manage your Dads pain by putting a syringe driver in (like a line in his arm there's 4 different drugs they can use, for pain, sickness, agitation and secretions) and once my relatives got to that stage we could really talk much.

You mentioned a long overdue heart to heart. Get some childcare in place and some emergency leave sorted and visit 💗

You hopefully won't then have the "wish is been there sooner" feeling which is dreadful for people x

To be honest the fact that it has been going on for a couple of years gives me doubt that it is pancreatic cancer.

The (young, fit, healthy) man I know who died of pancreatic cancer ran the London Marathon in April and died in August.

Understand how you are feeling OP, MIL was suspected stage 4 bowel cancer in December, refused medication etc, managed at home with a mixture of carers, macmillian, district & marie curie nurses and her own GP. She passed away in April. She went downhill fast.

If I were you I would spend as much time as you can as he may not have long left

Its so hard to know what to do as don't want to leave it too late, OTOH it may not (yet) be as serious as feared... It's not that easy to get up there as newborn/young family/busy partner but feel I have to see him to make some kind of risk assessment of my own. And to try and see what he thinks is going on, and see if he will explore treatment

Your mum - if your dad absolutely won’t - need to call the GP tomorrow as a matter of urgency. The ball needs to start moving ASAP.

If it were me, whilst incredibly difficult, honest talking to him and because he is loved is needed and the healthcare professionals need to be made aware so investigations can start.

@naturallyred The GP is aware of the situation I believe, as am ambulance was called a couple weeks ago due to acute pain. Cat scan arranged but dad cancelled it, did accept painkillers though.

Tricky part is that he is refusing treatment, spoke earlier today and he complains that his symptoms are being ignored and that's what he wants help with. I asked if it had occurred that refusing help could mean moving from a treatable condition to one that is terminal, he didn't answer snd doesn't want to discuss it. I can't underline enough that even in good health he can de a very difficult character, so this stonewalling is not unusual.

I want to see him with or without my family this wkend but he has not yet agreed to this. May ignore the lack of communication and go anyway.

Agree timelines look unlikely for pancreatic cancer, symptoms more like gastric.