Terminal diagnosis support group

[ScaredOncologyMum]

First thanks to @Mumsnet for setting up
the children’s cancer chat. I have posted under other names before and had so few replies. I asked in Young Lives if there was anywhere for prebereaved/anticipatory grief parents to get support, and then thought Mumsnet might help. Am delighted there is now a children’s cancer topic. So here I am. (Under a new name).

we have been told DD is chemo resistant and nothing more can be done. No timescales, and DD is well, at school, no lines, no medication, no knowledge of what is to come. An Immunotherapy trial drug will be made available when her tumour markers start going up
again. So we are effectively waiting for her to die.
I am trying tolet her live a normal life. I get her to take some supplements and am trying to feed the family a v healthy diet as have been sucked down some of the adult ‘eat your way out of it’ cure pages in FB. We haven’t told other people because she doesn’t know and we don't want her to be treated differently.
of course we remain hopeful about the immunotherapy. Some days I convince myself that the diet and supplements are keeping it at bay.
But the ache of sadness never leaves me. It is not right to watch a child go from ‘normal’ to death and I have no idea what to do with it. By which I mean the sadness, the pain, the fear. So much ‘she looks so well!’ from well meaning family and friends. But I know there is residual disease and an official relapse is weeks/months away.
Within our ‘being normal’ we are trying to have fun and enjoy life, and I echo the gentle parenting comment mentioned in the ‘new thread’. I am a different person now entirely and cannot unsee or unhear the things experienced (especially on Lion) and I don’t think anyone can understand.
Am hoping others from the YLvC chat will join here so we can support each other through this nightmare.
sorry for the long opening message 😫

Hi OP, I've got no life experience or advice to offer you but I couldn't read and run.
Please just do with your DD whatever you'd like, how old is she?
Could you pause life a bit and go on any kind of adventures?
I cannot even imagine the pain and heartbreak you and your family must be dealing with, and it's much harder to understand when someone doesn't look unwell.
You have every right to scream, shout, cry, silence, and feel every emotion I've no doubt you do.
I really hope some people come along to your thread to offer you the support you are looking for ❤️

I'm so incredibly sorry to hear this. I'd be a complete state, I'm terrible with anticipatory grief, worse than when the thing I'm anticipating actually happens.

all I can suggest is finding one person who you can talk to, someone who won't tell anyone or change the way they treat Dd. If you don't have a family member/friend you can trust, then a counsellor?

(((HUGS)))) & best wishes for a new trial/drug/therapy that works for DD XX

I'm really sad to hear this. It must be agony. I hope the right people join you here as it probably feels lonely hearing from lots of people who don't know what you are going through. I don't (yet? either?).M y child will die quite quickly if their cancer returns, as there is nothing else available to treat this type of cancer other than what has already been tried.

There is a lovely book called Follow the Child written by a mum who cared for her child following the return of his cancer. Also I recommend Rob Delaney's little book if you haven't already seen it. Together for short lives is supposed to be really supportive. But you're right, you can't beat linking up with parents going through the same thing as you at the same time.

@ScaredOncologyMum I've just seen this thread. I'm so sorry to read this, I'm not in the same situation, but I'm here and will be as long as you need it. Have Lion/the Marsden/your local been any support? I'm v realistically expecting you to say no tbh. Does your dc still have regular scans?

You can vent here, we completely get it. We're not in the same situation today but still very precarious and that won't change. I now live in this very moment, try my very very best not to worry about tomorrow, and know that I cannot stop what is going to happen. It's taken a lot of work for me to get to this point, a huge huge amount of therapy and antidepressants. I think the antidepressants have been the most helpful and I will be ready to speak to the GP asap to increase the dose if needs be. I found it impossible to disengage/detach without them. Having said all that, when my dc says they have a headache, internally I fall apart and think the worst. It's a very scary, lonely world and I wish more than anything parents of children with brain tumors could all live on the same
road and be there for each other, as we completely get what the other is going through and be ready to help each other mother our children during the hardest of days.

My dc was referred to the hospice a few years ago to help us build up a relationship, I'm guessing in case the time comes. We've not been in person because it's about 45 mins away from us and my dc was v symptomatic and ill for a long period
but I have met their outreach person quite a few times. Unfortunately my dc doesn't like them (I get why!) and so we've disengaged. It worries me that we haven't built up a relationship with a place like this though as if/when the time comes, I think that would be helpful. There's no PICU at my local, only a completely inept, understaffed HDU which gives me PTSD flashbacks to even think about.

I have lived my dc's death, funeral over and over and over again in my mind. Every night, every spare waking thought for about a year/2 years. It was terrible and followed a time in PICU. The antidepressants have stopped those intrusive thoughts for now. It helps that my dc isn't on treatment now and although has a v large brain tumour, is doing far better than her oncologist thought given the initial 6 months, mutations driving the tumour etc. So today, I take that as a win.

You're being asked to parent as if you're a super human - to cope with the knowledge, keep it from your child (if you decide to do that) and try to live 'normally'. Hope so much that your dc stays well until
the science catches up and new meds/trials emerge.

I couldnt read and run… what a thoroughly awful place to be as a parent. I have absolutely no concept what you are all going or have been through, but just wanted to say how brave I think you all are. You’re in my best wishes and thoughts.

I'm not in the same situation, but I wanted to say how sorry I am that you and your family are having to go through this terrible time.

I will remember you in prayer and also hope and pray that you're given as long as possible with each other. Big hug xxx

It’s bloody hard isn’t it. My “child” will be 26 this month but he is still my baby. A year ago at the end of this month our lives changed forever.

He has the worst kind of brain tumour. After surgery and treatment the residual bit they were unable to take has shrunk and is currently stable, but it’s like we are living with a daily ticking time bomb. He too looks completely well.

My advice…live life to the full with your child and have no regrets that you didn’t do xyz. We have done a huge amount and still have lots to do. I am fortunate that the company I work for give me a paid day off in the middle of the week - which is mine and DS’s day to do whatever he wants (unable to drive atm) and I love spending that time with him.

Sending all my love to you and your family xx

@banabak I totally get how you felt/feeling. I too atm live that death/funeral scenario.

I asked for an appt with our GP (am already on Sertraline for the menopause) and he rang me as I wanted to up the dose as I literally wasn’t coping with the situation. I remember taking the call at work and having to go into my walk in cupboard as I was so upset and told him I felt suicidal. He was amazing and did up the dose and rang me every week for quite a while to make sure I was ok.

Sending my love to you xx

I'm so sorry to hear, sending you hugs.

How old is your daughter? Have you got a counsellor?

@BellaVita I'm so sorry, of course your 26 year old is still your baby. I love to hear about you and your son cramming in mid week fun together. Did the increase of meds help you?

@banabak yes the increase in meds absolutely helped. My head is in a much better place.

Looking forward to our next few trips - Monza GP, Back to the Future Musical in London and then Busted in concert mid September (one of his favourite bands growing up).

Yes, ADs have def helped me too. Takes the edge off the rawness of the emotions. Am trying to fill the days with fun but also be normal. Hard to juggle. Hospital etc not much use . Do have psychological support. No contact with hospice- DC not keen on medical
staff so not holding out much hope for a rapport there. Am glad to find some people here. Will post again when next steps reached or mental
health requires. Thank
you all v much

Hi. My child had leukaemia.

Young lives versus cancer (Clic Sargent back then) were very good and supportive.

If there is any useful support I can give you, I offer it willingly.

How are you and what is your financial position? Hug.

Just to add, we were under shared care at the RD&E, on Bramble ward, but initially at Bristol. I totally understand your comment about not being able to unsee things. Holding your hand. x

So I posted a bit on @C152’s thread, the endless wait for results etc. Eventually got the call, there is a specific mutation in the tumour (this isn’t a genetic cancer like a BRAC2, rather the bad cells have mutated themselves, so the rest of her is fine, and it isn’t inheritable). There is a trial available with an immunotherapy agent but tbh the results are not outstanding in adult patients so it would not be a game changer more possibly a time gainer. Loads of scans, good news is brain is clear, and spread limited. Doctor surprised by lack of new lesions. In my optimistic moments I put this down to the variety of supplements I am researching and giving, in my sane moments I suspect it is ‘luck’.
Finding life very lonely, mainly due to our decision not to tell people. But when yawning on the phone to my mum (who knows some but not all of this), she asked if I was struggling with menopause. No. It is just f**king exhausting living from one hospital
appointment to the next and stressing over every cough or bruise in case it is a sign.

Hello @ScaredOncologyMum I'm sorry the trial isn't sounding as good as it could be. It is great news about the latest scan results, though.

The constant, massive ups and downs of waiting for scans, waiting for results etc., are enough to drive anyone crazy. We're all here if you need us. x

So happy to hear that the scans have been positive. Such a relief. Have you got one person in real life you can talk to? A therapist? It must be utterly exhausting holding it in all the time. Thinking of you, and we're absolutely here for you as much as we can be. This path is the absolute worst.

I was the absolute opposite - I basically over shared in every possible situation I was in - random neighbour I'd not met before, at the supermarket checkout, dentist.....and the list goes on! I look back and cringe at how many people I must have shocked/traumatised/over shared with. I've found my way more now and seem to be able to separate (a lot of the time) the diagnosis from the every day (except when the word headache is mentioned, then I'm back to day one).

I so so hope your dc responds to the trial. I keep on hoping that time will bring more treatment possibilities and if we can just get more time....

So, 2023 the year of hoping and smiling and trying to be normal.
More surgery in December, that was meant to buy more time as previous scan was looking good. But now the most recent bloods show a huge rise in tumour markers. I am praying it is a lab mistake. Bloods 18/12 sample not big enough to process, bloods on 23/12 sample does not get to lab on time to test. So a mistake isn’t a complete impossibility! Xray and ultrasound in past week. Another visit to hospital tomorrow. Feel very anxious that ‘being normal’ may not be possible much longer.

Hoping and praying for good news for you

Oh no @ScaredOncologyMum . What is tomorrow's hospital visit for? More bloods or to find out the results of the scans? I do hope it goes as well as it can.

No, a mistake isn't out of the question...especially given the two cockups you mention! I'll keep my fingers crossed it is a mistake and you can all be 'normal' for a long time to come. X

Bloods and scans. Not got scan results yet but bloods are very bad- worst they have been since 2021. Another visit next week. Am very scared. Will update next week. But the thing bugging me, and this will come as no surprise, is that it seems to be in a part of the body that hasn’t been regularly scanned. I am a mess.

I'm so sorry for what you are going through. No words of advice but a gentle hand hold to you and your family.

Oh no @ScaredOncologyMum . I am so very sorry to hear that.

Oh no, I do hope you have supportive people around you. If you feel you are overwhelmed (understandably), the GP can give you something to help you feel more able to better cope/ control panic.

@ScaredOncologyMum I'm just so sorry to hear what's going on with your dc. How on earth do we put one foot in front of the other during the worst of days? It's like the universe has dealt the worst deck of cards for our children, and for us as mothers with the momentous task of acting normally so as not to terrify our dc. It's a super human task expected of you. Hope you've got some real life support to get you through (although I say that with the full knowledge that just as hospitals don't provide the support for our dc as would probably be expected, sometimes the closest relationships don't either).

Is the possible spread to the spine? Or too early to know?