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 😫

Quick update. Kidney function is very bad. This has been an issue for a little while but has now dipped massively- apparently due to the radiotherapy. I don’t think I knew RT would cause such a lot of damage. I think they run thru side effects and you are sort of desperate for a solution and the positives outweigh the negatives. Poor kidney function means she doesn’t meet the criteria for the trial. So have to apply for ‘compassionate use’ from drug company.
Some talk from doc of chemo. Am torn, I promised no more chemo. Hair would go, sickness, very high risk of diarrhoea (and likely to be worse end of scale, again due to to the RT). And it would not cure just extend time. But time being sick and bald? How do you even begin to weigh this up?

I'm so sorry to hear about the trial. I hope the drug company agrees to give it on compassionate grounds.

The list of side effects they go through before we sign consents are so horrific and treatment is so important that whenever I've had to sign, I haven't been able to engage with the what ifs. There's no way you could ever have predicted what was going to happen. My dc has collected a long list of the 'this will never happen' side effects/developments.

Such a hard decision for you to make now (which is obviously the biggest understatement of the year). Some children seem to have fewer side effects and others seem to have the whole list of side effects. One option could be to agree to try the chemo and monitor how bad the side effects are, and then stop if it's too much. I'd want a belt and braces approach from the medical team from the very beginning though - if sickness is likely, I'd want the best anti sickness meds from the very start. (Highly recommend a combo of Emend and iv ondansatrone during the infusion). None of this let's see how it goes - and ending up in hospital on an iv drip for days.

What chemo drug or combo of chemo drugs are likely? Maybe some of our dc have been on them and could share experiences of side effects.

This is a beautiful blog written by the mother of Neve who died of a brain tumour. I hope you don't mind me sharing it. Her words give me so much comfort. Emily has posted on FB groups I've been on and I've found her to be incredibly thoughtful and wise.

emilytammam.substack.com

Thanks all. I follow Emily too- her piece about this period echoing the ante natal period really resonated.
It is Irinotecan. It is an impossible decision. We can delay deciding til later next week. We have supported all proposed treatments previously, had faith in the system and stayed hopeful even as the odds dwindled. But now I just don’t know if I can encourage and support more chemo. The trial drug yes. But chemo maybe not. Certainly not without her agreement.

Had a long day at the hospital earlier in week. In the bays with curtains 1) teenager with evangelical Christian granny, teen refusing dressing change, granny saying it was god’s will (that’s the short version of the on going row), 2) teenager on steroids crying about weight gain and having nurse try to explain why inducing vomiting a bad idea, 3) primary age child screaming about line access, 4) mum with a small baby and a pre schooler with Downs and cancer (beautifully behaved but just made me feel sad) and 5) us with DD silently crying as the nurses poke and poke again as cannot find a vein. And this is just one visit. One day. And it feels too much for any child to go through.

How are you doing @ScaredOncologyMum ? Been thinking of you

Thank you. Have had a really up
and down couple of days mood wise, lots of tears but am determined to try and keep
on top of it. Is a vicious circle of being so tired and sleeping and then a mad rush then not taking ADs or HRT and then struggling all day. Obviously the solution is to take the ADs every day but when you need ADs sometimes it is hard……. .
Also had a run in with an ‘alternative’ practitioner who was supposedly helping us. That resulted in me weeping on a bench outside Tesco. Honestly it is the wild west out there. Am so desperate to help DC was exploring all avenues and ended up being accused of faking it all!
No news yet on the compassionate use of drug. We have had a couple of amazing days out but would be too outing to share. Fatigue is an issue, so I hope we hear on Monday about the drug.
Still not told anyone. Protecting them, maintaining some sort of normal for me, but also I am scared, scared to tell and scared to give up control. And if you say it out loud it makes it real and I don’t want it to be real.

Glad you've had some good times recently. I know what you mean about forgetting to take the ADs when you need them most. Stress makes me so tired, its as if I could disappear and sleep my worries away.

If only you/we were faking it all. I'd love to be making all this up rather than being a mum to a child with a brain tumour. That sounds utterly utterly mad. You're doing amazingly by holding this in and holding yourself together. It's super human mothering/humaning, no wonder you're exhausted. Hoping so much that the compassionate use meds comes through quickly.

Quick update. Mad alternative therapy woman was quite alarming, she sent someone round to collect the products which was scary as had no idea who this person was and they know where we live…. I contacted some ‘hospital mums’ the kitchen chat mums that I have contact details
for and had a rant. Truly surreal situation. I cannot tell you how wounding it was to be told I didn’t care about my child and accused of faking it.
Good news is drug approved and started with so far no bad reaction or side effects. However the pain is becoming an issue. Paracetamol helps and have morphine if needed but am keen to know if it is the lung mets causing pain or the shoulder. Is so confusing as not sure if the guidance on ‘lung cancer pain’ applies to lung mets from a different primary. Trying to get to bottom of that.
Was debating updating this and reread about the ADs, so got up and took them. Hopefully will have a better day today as a result. Love to everyone on here. Also I braved telling some close family members. They had suspicions and were glad to have the truth even though it is heartbreaking.
sorry not very well structured post!

The alternative therapy woman sounds scary, I hope she's gone for good! Have had lots of suggestions for alternative stuff, including from the kitchen mums but am too scared to try. Also there's no way DC would go anywhere near mushroom tea etc. DC probably give medicinal cannabis a go but then so would I 😂So glad the drug was approved and little side effects, the continuing pain must be so hard to watch though. Hope the drug keeps things under control and they sort out decent pain relief

Thanks. The mushrooms I have are powdered, I sneak a spoonful into hot chocolate and spag bol. I am usually a sceptic but you reach a point of desperation. I wonder if we know the same ‘kitchen mums’!
On a separate note am finding the coverage about the King excruciating. This morning I read that he had ‘no obvious signs of the disease’. That’s pretty much the problem with cancer, that you can’t tell you have it!

Me again. Latest drama is spinal cord compression. Annoyed that this has apparently been visible on the scans for a couple
of weeks, but only picked up last week, despite her complaining of back pain which should be a massive red flag. She is now on steroids (Dex) and is super moody. Have only ever had Dex for a day or 2 before. I feel like it has taken my girl away from me. Feeling very tired and fed up. Any ideas to deal with Dex? Thanks

Hello @ScaredOncologyMum So sorry for all you and DD are going through. Has it been helpful to have some close family members know what's going on?

Christ almighty regarding the hosp not picking up the spinal cord compression. I'm so sorry the usual shitshow continues. What did you/your DD decide about further chemo?

My DS was on Dex for a couple of months following brain surgery. No one told us anything about it, so we had no clue what potential side effects might be. In hindsight I feel very guilty that we didn't look the details up ourselves sooner, as DS's side effect was constant hunger. It was like he was never full. He would have eaten 24/7 if we let him. Months later, a consultant at GOSH says we got off lightly if that was the only side effect, as lots of kids on Dex get very agressive. Sorry I don't have anything helpful to add there; but know your DD isn't alone in her personality being affected by the drug.

Another update from me. The targeted therapy drug isn’t working, tumour markers are shooting up. Scans brought forward, being offered another type of chemo that shows promise in trials but would only buy time not cure.
So that awful decision has to be made and will have to tell DD the horrific reality. That is the thing that causes me the most pain. How to tell a child who has put up with so much and always remained calm and hopeful that it was all in vain? I have cried more this week than in the past 3 years. It feels like the mad train is coming to a stop and the feelings finally catching up. I am a mess. But on the outside I think I still seem ok. And I am so sad for the pain that her siblings are going to face.
Off to take the ADs and eat (am in the not always doing self care stage but trying hard to keep on top of it). Helps to re read what I posted before to sense check myself. Hope
you are out of hospital @C152

Oh @ScaredOncologyMum I'm so sorry to hear your update. The night my dc was diagnosed, I will always remember another parent in the kitchen saying to me: you're on this road now and you can't get off it. And I think there's something so utterly and primitively true about that statement. It's like the one truth of life somehow, and when everything in you just wants to take your dc and run, you can't run from it and you can't get off. So I really hear what you said about this mad train coming to a stop.

Has your dc been offered avastin? I don't know what the side effects are like, but I know children with my dc's tumour are offered it to help stop or slow down sudden growth.

Thinking of you and your dc @ScaredOncologyMum, please post anytime and we'll be here. Same for you @C152, hope you're home from hospital now.

I too am so sorry to hear your latest update @ScaredOncologyMum . How totally, unbearably gut wrenching it all is.

I remember crying to a very kind consultant (who I only met twice, alas) at the start of radiotherapy, when DS was in a very bad place, physically and mentally - what if I let you do all this and it doesn't work? What will I say to DS then? And more words to that effect. She actually took a moment to think about it, then she cried too. She said they don't often stop to think about exactly how much they're putting these children through. How much they're asking of them. An amazing radiographer was also in the room and I asked her what I would say if my son said enough was enough and refused further treatment. What would I say to him then? There was a long pause before she took a deep breath and said, you will be honest with him, like you were today, and you will tell him his choices.

Children shouldn't have to make such hideous choices. Yet they're the only ones who really can decide how they want to live and die. It is unbearably unfair. I am so sorry you are at this place with your daughter.

Thinking of you and your family. X

Popped over from the scanxiaty thread as I feel it's probably more appropriate to post here.

Jake got his wish of seeing his sister catch a fish today, it was top of his bucket list and he was very excited! I have just settled him in for the night, another night wondering if he will be awake in the morning. I think it might be seen as weird using his name on here, but it feels right to me.

Hi, good to have you here @Downtoyou . Delighted the fish was caught!

We are having ups and downs. Last week I really thought she had taken a turn for the worse, breathing so laboured and struggling with stairs and even flat walking. Thought it unlikey she would be able to go to school again. But scans show tumours have not grown much, but there is now lymph system involvement, and that causes the breathlessness. Steroids prescribed and they have had an amazing effect! Only in this mad world would lymph involvement seem a good thing.

I kind of told her, gave her the 3 options, do nothing, the chemo with lines and baldness or the one tablet a day chemo, and said ‘none of it will make you better’. I cannot tell if she understands what that means but she has had no questions, is keen to be out and about and the only thing that has been in any way unusual is that she came to sleep in bed with me and DH one night. She chose the one a day chemo. I feel I unintentionally misled her as it is also the steroid, Lansoprazole, co-trimoxazole and ondansetron. Not quite one tablet a day!
All we can do is our best. I think we should use same wording to older 2 children, DH seems less convinced that we should tell them. I feel like I would like to tell a few close friends now but that other children should know first.
Due to the dramatic improvement have booked a few more days out.

Stay in touch everyone

@Downtoyou I'm glad Jake got to see his sister catch a fish!

@ScaredOncologyMum Forgive the questions, but does the one a day chemo pill have the same effects as the chemo through the line? I'm just wondering about the lansoprazole - will the chemo affect your DD's appetite in the same way as other chemo? Did the ondansetron work for her? We ran through the list of antiemetics, none of which worked for DS.

In terms of telling your other children, won't your DD end up talking to them herself?

I hope the steroids keep having a good effect and you have some lovely days out. x

Hi @C152 it was sold as far fewer side effects. The Lanzoprazole is because of the steroids.

However counts can drop and weekly bloods needed. She hasn’t been on this type of regime for over a year. Bloods done Wednesday, had a day out yesterday punctuated with calls from a consultant from KCH, community team and the symptom team at main hospital.

KCH doc was saying they needed to check dodgy levels ‘before the weekend’. I have this fear they will say she needs iv antibiotics or a transfusion and will be a weekend inpatient. Have not had that for a long time and tbh dreading her reaction if that is needed. This was meant to be the easier option but already is feeling like quite a lot.

But we had a fab day out yesterday and the resolution of breathlessness is a win.

How are you getting on after the long stint inpatient?

Jake has been on a syringe driver at home for almost a week. He suddenly had sickness and headaches which was a sign that his disease was spreading. He is currently on a hospital bed in the living room. His dad and I (separated) have been sleeping on the sofas every night. It's just a waiting game now. He is becoming more and more sleepy and less responsive and it's breaking my heart to see. Less than 4 weeks since we were told the cancer has spread.

I am thinking of you and Jake from the other side of the world. xxx

@Downtoyou so sorry to hear this. So scary how fast they can decline. Reading about Jake makes it even clearer to me that we are living fortnight to fortnight. It is my daughter’s birthday today and it is hitting very hard. I hope Jake can stay pain free.

I'm so sorry @Downtoyou . I too hope Jake can stay pain free and my thoughts are with you. x

I'm sorry @Downtoyou. Is the care team good, is it easy to get hold of people and meds? I hope you have good people around you x

@Castlereagh the care team are incredible with him and treat him as though he was their own child. We have all the medicines here ready, there are some we can give when necessary. The team come out twice a day and there's a number of we need advice or we want someone to come out. He has been mostly peaceful