To want to know my Mum's prognosis?

[UnBledPerdu]

It's been recently confirmed that my Mum's cancer has come back/spread and is now incurable.

She has made it clear that she doesn't want her oncologist to tell her how long she is likely to have. When she first had cancer, she wanted to know as little as possible about it so this isn't a new thing.

I completely get that this is her way of coping and I am being (outwardly) supportive of that... but, inside, I am struggling with having absolutely no idea of what kind of timescale we could be looking at. I know doctors can't give an exact date but to even know whether we're talking months or years would be something, especially as I live really far away from her.

I worry that I'm being unreasonable to feel this way - as if I'm wanting her to do something she explicitly doesn't want to do just so that I can feel (a bit) less stressed.

I don't think anyone is being unreasonable here, I totally understand why you feel the way you do and I would also struggle with the uncertainty, but it is your mum's decision and she has the right to not share her medical information with anyone if she chooses.

Yes, it's absolutely her decision. I get that objectively and would of course never pressure her to find out / tell me.

I just feels like a kind of torture, knowing she's going to die but having no idea when.

I said yabu, but not sure you are in some ways! Obviously, the doctor cannot tell you even in vague terms unless your mum agrees, but I perfectly understand how frustrating and stressful being 'in limbo' is.
Make plenty of memories while you can, and keep a smile fixed to your face!
Take care

I'm sorry OP. This is so tough. We went through something similar with my mum - she never wanted to acknowledge or say what is happening. I remember when I begged a nurse in hospital to please tell me if my mum is actually dying. It was her way of coping and while I didn't agree with it, I couldn't change it. I looked for signs and did speak to a family friend who was a palliative nurse, which helped. There are incredibly supportive boards on MN too. Saying all this, your mum might still have many years ahead, saying the cancer has spread doesn't always mean death is near.

YABVU.
The patient has the right of self-determination and that should be respected.

I would also really struggle with this, I'm sorry about your mum. You are absolutely not being unreasonable feeling this, we all deal with things in our own way and approach things differently. You are supporting your mum and recognise its her decision to make. So in my eyes you are doing everything right. Please don't feel guilty about feelings, it's actions that matter.

I’ve always said in those circumstances I wouldn’t want to know if it was happening to me. If people around her know (you) then you could end up overwhelmed with emotion and blurt it out, or little looks you give her subconsciously will alert her to things.
You need to remember this is happening to your mum and she has a right to not know. It could send her over the edge knowing, and it would be even harder for her knowing that you did know. You would be showing signs of preparation too. Let her do this her way.

Lots of people lose family and friends completely unexpectantly with no warning, at least you know you need to make the most of your time with her now and you know that now is the time to make memories. Focus on that.

Thank you ❤️ I'm sorry you've been through this too. Yes, I'm hoping she still has many years ahead - not least because I would love my 7-month-old to have some memories of her Nana if at all possible.

I feel your pain OP and I’m sorry for you both. My mum was diagnosed with bone lung kidney spine and spleen secondaries from breast cancer recurrences 15 years post treatment. I thought she’d be gone in 18 months but it’s 5 years later and we are on holiday now in south east Asia. She’s having immunotherapy as part of a medical trial and although she’s not cured and won’t ever be she is living and living well. Try not to think in timelines because often there isn’t one. Enjoy your time together and I hope there’s something out there for her too xx

Big hugs.
You have to respect your Mum's feelings and wishes here. Although I have huge sympathy for your distress too.
When my Mum was in late stage cancer the advice I was given was it's hard to predict a timeline, but the rate of change is a good indicator.
Keep in touch with your Mum and follow her lead.

I agree that neither of you are being unreasonable.

A clinical colleague passed on a rule of thumb that if people are deteriorating over months, they probably have months left, if they are deteriorating over weeks they might have weeks left, if they are deteriorating over days they probably have days left. If your mum is looking pretty chipper and not much changed from a year ago, maybe she still has years?

I'd have a look to see if you have a Maggies centre locally, they may have advice or a carers group.

Yanbu at all. Of course as you've said you know you can't force or persuade her to find out but you are completely entitled to feel like that. I'd feel very similar in those circumstances. I'm so sorry op.

I don't think either of you are unreasonable, just you need different things to cope.

When my DF had cancer I was able to anticipate very accurately as my job is Palliative Medicine and I found it helped to know timescales.

The Cancer Research UK website has prognosis stats if you know her primary and stage.

Even just knowing the primary and secondary sites can give you an idea as there is a world of difference between recurrent lung cancer and postmenopausal breast cancer with bone mets.

If your Mum has been allocated a specialist nurse it might be worth asking if she would give them permission to talk to you - then you could ring them
DF was diagnosed with bowel cancer 8 years before he died from a stroke - he went into denial and wouldn’t even call it cancer - just used to call it his ‘problem’ he did allow me to discuss his care though and it worked really well as I could just ring for test results or if I felt he’d deteriorated or had new symptoms
They reassured me it was quite slow growing and due to his age and other health conditions they would not be offering surgery or chemo or radiotherapy

The not knowing is so difficult. My DH's cancer came back in his bones and it was determined he was palliative care only, but the doctors refused to even use the word 'terminal' or discuss a prognosis. They tried different medications to stop it spreading further and right up to the day he died they were trying to treat his symptoms, even though it was obvious he was in very poor condition. I spent so much time with Dr Google, reading other people's experiences and attempting to guess what stage he was at, and how long he may potentially have. I hope you have a better journey with your DM.

I’m so sorry, this would drive me completely crazy.

Yes, a friend of mine said the same - that even if I could somehow find out, I would surely make it obvious to my Mum through the way I then acted around her etc.

The 'making memories' part of it is one of the reasons I wish I could know. I live many hours drive away and have a young baby, so currently we only see each other every couple of months. If she doesn't have much time, I would want to massively increase my visits / go and stay with her for an extended period.

If it makes you feel any better I have had two relatives who did have a prognosis but then events overtook things and the actual outcome was nothing like the prognosis. So even if you did know, you’d never really know, if you see what I mean? You just need to take things a day/week at a a time.

I am respecting that. I would never pressure her and I haven't told her that I'm feeling this way as I know that wouldn't be fair.

This is really helpful, thank you ❤️

This is tough on relatives but the medical staff have to abide by client confidentiality.

If the patient doesn't want to know themselves but is happy for a relative to know the medical teams can and do give information to relatives (very strictly with explicit permission from the patient). But what you've said here is the catch, it might be really hard for you to not convey that information unintentionally, especially if it was a poor prognosis.

I totally understand and accept this point but also feel for the OP. She isn't next door.

If her mum was due to live for a month she might get signed of work and spend all the time she can with her. If it's going to be three years that's not a practical or sustainable choice.

So with so little information, "make the most of this time" is impossible advice to follow.

The fact is she's going to have to mostly get on with her own life until things suddenly turn and become obvious - at which point she might then live with the regret of not having done enough. It's an impossible situation.

My DH has lost three family members suddenly. It's very scarring. Some warned is helpful (although I do think it's better to have a relatively short warning than years of illness)

My Dad was the same and didn't want to know anything. He knew he had cancer and then he knew he had terminal cancer. I wasn't at all surprised with his way of dealing with it and we just went along with it. He didn't want to do special things and preferred us to carry on as normal. He was ok talking about it though and was happy (?) to talk about death and what he wanted etc. He did not want people fussing around him and would have hated the thought of people wanting to 'make memories'.
I now have a friend with the same type of cancer and I know every detail of her diagnosis and prognosis. Her approach is the opposite of my Dads. Neither approach is right or wrong. You have to respect the opinions of the person with the cancer. You would be wrong not to.

Oh gosh, that sounds so tough - I'm really sorry 💐