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'm in a similar position with my mum, however her oncologist told her a prognosis without asking if she wanted to hear it or not!

if you really need to have a rough idea, chatGPT could give you that. I really struggled with not knowing how much time mum might have left, and found myself asking one night and it was very similar to what experts had suggested.

OP try looking at it from a different point of view. Even if your mum had no illness at all - we none of us know how long we have left. You could be hit by a bus tomorrow and there was no time frame on that! You don't live your life expecting to be hit by a bus or you would never step outside your own front door. Added to which if you were told you have six months left - how would you feel if you were still here seven months later?
Having been through cancer treatment and been told conflicting opinions of cured or in remission, I go through life much like everyone else - I plan nights out, I look after GCs, go shopping, all the things you would do normally and I suspect this is what your mum wants to do. You live some distance from your mum which is obviously impacting how you think. So if it helps you - plan to see her more often or phone her for a chat. If you knew she only had X amount of months left it will affect your thoughts and how you treat your mum because you will feel that you are running out of time. You have 'one life live it' in the present here and now!

My parents were told and decided that they had heard something completely different.

They did let me speak to his oncologist which confirmed to me that they were being very unrealistic but this didn't help at all in terms of 'making memories ' as why did I want to visit so much when he was cured?

Ultimately I had to respect their decisions and let them do their thing- which was hard as most of their decisions made the situation far worse than it needed to be.

I understand op. I had a parent who had a type of dementia that caused very quick cognitive decline, but not knowing how long they’d be ill before it took them is difficult to deal with on many levels. I absolutely get your mum’s position as well, anywhere from her accepting it for what it is to just being in denial until it can’t be denied anymore is her right, doesn’t mean you won’t worry or overthink about it, it’s your mum and this must be devastating. It’s still very raw at the moment, as the weeks go by it will be less at the forefront of your mind, in the meantime would you be entitled to cancer related counselling?

THIS

When my DSis was dying 10 yrs ago (of a rare and aggressive cancer) - I lived 1.5hrs away by train, DPs lived 2hrs in the other direction. We bumbled along for 3-4 months spending a few days with her when she was having chemo etc. She did want to know, all the way through, until her final admission when she didn't, but she had given permission for us to. When she was admitted for the last time her consultant told us it would be "weeks not months". Other staff were having bizarre conversations with her about getting her bathroom redone to accommodate a walk in shower, pretty much while we were on the phone to the Hospice.

Knowing it would be weeks meant we could put our home lives on hold and move to her city, I stayed with friends, DPs and DB moved into her little flat.

She had begun to liaise with the Hospice straight away after diagnosis, they offered all sorts of lovely things like aromatherapy and massages for anyone living with a life limiting illness. You might want to encourage you r DM to do that if a local Hospice near her offers similar. It was an incredibly lovely and life affirming place to be - my first experience of hospices and I was massively impressed.

We "sold" the hospice place to her as "respite" while the bathroom was redone. Within a few days of going in she was moved from the four bed ward to a private room as her condition deteriorate. She died 2 weeks after the consultant told us "weeks not months". In her final days she had one of us with her all the time, playing music in the background, making sure the morphine pump was doing its job, requesting fentanyl when it wasn't. DM was with her when she died. I had gone home for the weekend to see family.

Knowing meant that we could advocate for her, be there with her, and try to ensure her death was the best it could be.

You’re not being unreasonable to feel this way. I would feel exactly the same because the plans you could make if it’s weeks / months looks entirely different to if it’s months / years. You must feel like you’re going to be living day at a time, wondering if every call is bad news.

But your mum is also not being unreasonable in not wanting to know. Ultimately, you & I don’t know how long we have to live and we cope perfectly fine with that uncertainty. The harsh reality of life and death is that even with your mums diagnosis, it is perfectly possible she could outlive you (I hope not, and I do not wish any bad fortune on you). Maybe she just wants to forget about the illness and enjoy what time she has left and I can empathise with that.

Is it possible that your mum would be open to one conversation with you. A heart to heart on how you’re feeling and why you would like to have some understanding of the expected trajectory of her illness, so you can support her in the way that works for you both? You can understand her wishes etc. Would she allow the consultant to write it on a note pad, and her pass it to you on the promise you tell nobody and treat her no differently?

Please don’t take this as criticism or judgement and I hope you don’t think I am being cruel. Can I suggest you make the most of however long you have with your mum and start making those memories you want now while she is at her fittest. If you only see her every few months, that is 6 times a year. I would try and spend as much time with her as you can realistically. Spend time with her while you can have fun together. Don’t wait until she only has a short time left, when she may be too unwell to make those memories. Just do your best to see her as often as you can and have fun with her.

We've had two parents die after each had a tough year of steady decline and now have a parent with a terminal cancer diagnosis. She told she probably had a year last September, but at the moment it feels like it still could go either way - she could decline quite quickly or could conceivably hang on for a few years.

It does feel very different to the decline of the other two where there was no terminal diagnosis but the direction of travel was steadily downhill. But actually, it's not very different - we are very aware she won't be around for ever, but have no idea exactly how long she has.

So even if you had a prognosis, they can often be wrong. In your position, I might be thinking that every two months is less than ideal, and start trying to fit in some extra time with her - in lots of ways, it's great that you have the opportunity to do that before she gets really poorly. But obviously, you don't want to use up all your time and resources at this stage knowing that you might need to be there more towards the end. So it's a balancing act.

It's a very tough thing to go through and particularly hard if you have a young child as it feels so unfair she is being taken too soon. Unmumsnetty hugs to you.

My dad is the same way. I'd never even hint that I'd like to know as I know it's completely up to him and I would hate for him to seek out that information just so he could tell me, even though he doesn't want to know himself.

His reasoning is that he doesn't know a single person who was given an estimation that was correct. His cancer has had periods of quick growth, and periods of slow growth. It's been very difficult to predict. He doesn't want to linger on information that in all likelihood won't be right.

There are guides online that will tell you X% of people lived X amount of months/years following the diagnosis but really, it's personal to each person.

Sending you sympathy, I've been in this position and it helped me to plan and support my loved ones.💐
When my parents were terminally ill (separately, different conditions), I had a quiet word with the respective lead nurse and they told me what the expected timescale was.

The nurse caring for my dad was spot-on, he died in the month she had predicted and I had been told in December my mum wouldn't see another Christmas. She died in the September.

This was a number of years ago, things may have changed but I think HCPs who deal with palliative care will be used to this.

This is such a difficult situation @UnBledPerdu I'm so sorry you and your mum are dealing with this.

I completely understand you wanting to know how much time you have left with your mum and I can also really relate to your mum not wanting to know what her prognosis is.

There is no right or wrong - how you feel is how you feel, don't question whether you are being unreasonable, you are just trying to deal with your feelings, please don't feel guilty about it.

Is there a Maggies centre near you? They support family members and could be a great place for you to visit - you can just drop in for a cup of tea and a chat. They might be a good place for you to help process some of your own worries and concerns about your mum's situation.

Does she have any kind of immediate treatment plan in place? It sounds like this is all recent news, it may be that in time you will get more of an idea? Or as the news and initial shock sinks in, you may find that you come to have more acceptance that you don't know and just take things month by month.

Like others have said, incurable doesn't necessarily mean months - it could still mean years.

Wishing you and your mum all the best and sending you a hug.

Oh OP, this is hard and I completely understand. I'm very much a 'need all the facts' person. When my lovely Mum's terminal cancer diagnosis was delivered to us, without even thinking about it, one of the first questions I asked the consultant was "how long". I felt dreadful afterwards, as I'm not sure my Mum would have asked that question.

Have you researched the particular type of cancer that Mum has, or could you have a chat with MacMillan to see if they can give you some more information?

I'm so sorry you are having to go through this.

Just because you don't want to be told all the details of your prognosis doesn't mean you are 'in denial'. My Dad knew he had terminal cancer but he actively chose not to know the details. He 100% knew he was dying but found it more palatable not to know the details.

If you get to the point of having Palliative Care visit at home, the common solution is the relative ushers the nurse to the door at the end of the visit and has a quiet discussion on the doorstep.

Sometimes the nurse will even hint at you to come to the door although not everyone gets the hint.

YANBU at all. It's actually really hard for the people who have to cope with the death and aftermath to not have any idea. When my FIL had cancer he and MIL refused to ask any questions about disease progression or prognosis. Consequently, neither of them realised that his cancer had spread and that this meant that it was terminal, until he died. So he did nothing to get his affairs in order and she was absolutely blindsided when he died, despite his appearance suggesting that the end was near for a good couple of months beforehand.

I think I'd try and find out, if it were me. Of course, all timescales are very approximate and subject to sudden change, but I too would want some kind of ballpark figure, if possible. I'm sure there will be opportunities for you to ask someone - a doctor, a nurse - and if so I would take that opportunity

I'm so sorry you're in this situation OP
This is quite a common scenario and I had something similar with my mum.

It can depend whether the cancer is in a vital organ. When her cancer returned I assumed she was within the last year of her life and treated everything accordingly. She survived about 18months

If you can go and stay with her and she would be happy for you to then I would suggest just going to do this anyway. If it does turn out to be a short time she has left then you’ll be glad you went and even if she has years left, you’ll probably still be glad you spent that time with her.

I should also say if you are providing direct care the Dr may give you an idea nearer the end. I discovered afterwards my dad knew my mum was in the last month of her life but didn't tell anyone. But he was caring for her at home and had POA as she wasn't really capable of making decisions by that point

Thank you to everyone who's suggested Maggies. My Mum went to the one near her the first time around and they were absolutely wonderful so I will see if there is a centre local to me that I might be able to pop into for a chat at some point.

Knowing meant that we could advocate for her, be there with her, and try to ensure her death was the best it could be.

@thiswilloutme I'm so sorry about your DSis 💐

What you've said here is exactly it. I want to be able to plan (as much as possible) so that I can support her. Last time, I went to live with her for four months while she recovered from the surgery. Not having a clear picture of what is actually happening this time means I don't feel able to plan.

If you know her cancer type and where it has come back to, and what treatment she is offered etc you can probably Google and find the answer in a few minutes. When my mum had cancer she didn’t really ask the drs about timescales but I knew as I looked it up. It was all pretty accurate tbh. Some stats are out of date for general prognosis because for things like 5 years survival rate they can be 5 years behind. But once someone’s cancer has come back it’s usually quite right. You don’t need to tell her you’ve looked it up and can just make plans accordingly in terms of seeing her. Even if she wasn’t ill, you can always choose to go more regularly.

This is the best advice. It's usually apparent when someone is moving into the final stages, and losing them can happen quickly once their illness is physically evident (considerable weight loss, fatigue and becoming more illness prone).
My Mum was given a prognosis of 6 months, she was however still with us 2 years later. At that point though she deteriorated very quickly (in the 6 weeks or so) prior to her death.

Thank you ❤️

It's pancreatic cancer that was caught early(ish) first time around which meant she was able to have surgery, so a lot of the stuff online around prognosis doesn't seem to necessarily apply to her case.

I'm sorry about your Mum 💐

Thank you @Baileysandcream ❤️

She is due to start chemo in a few weeks time.

Could you reframe it in your own mind, by reminding yourself that everyone is going to die and it is very rare to know when it will happen? Like it's not an uncertainty you are having to cope with because of her choices/preferences, it is just how life and death is?