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BT Survivors Club [Title edited by MNHQ at OP's request]

59 replies

Catsandcheese · 23/02/2026 21:06

Hi lovely people,
I am the parent of an adult child who has a brain tumour, diagnosed 6 months ago. We are now in a wait and see holding pattern. It’s low grade but grew suddenly a while ago causing problems with hydrocephalus but these now seem to be resolved.
As their mother I am now scared to have a glass of wine in case I need to drop everything and drive to the hospital based on experiences last year. That’s fine for me, I want to be there. Problem is now other family members are trying to include me on holidays etc and I can’t imagine feeling ok to be further than a couple of hours away.
i guess I’m looking for some perspective here. Should i be ok to go away for a few days? My adult child is single so has no other help than me. And I’m happy to just stay here and avoid these invitations but people seem to think I need a holiday!

OP posts:
YourRubyMaker · 26/02/2026 18:18

GentleGoose · 26/02/2026 15:09

It’s lovely to have a group to dip in and out off, so thanks for setting it up. Dealing with this can be so lonely. I have been so depressed since DH diagnosis and just trying to hold everything together. Our life got flipped upside down and because of the location of his tumour - left frontal lobe- and where he had surgery, his personality and moods can be all over the place (although he doesn’t seem to realise). Our marriage has went from a partnership to me slipping into a carer role which he resents. When I try to give him one or two things to be responsible for he forgets, again a side effect of the surgery. I am mid 30s but we have been together since we were teens and the thought of the road ahead is scary. When I speak to the GP they just keep increasing the antidepressant medication I have been prescribed since this happened. There doesn’t seem to be much support out there.

My sons 12 diagnosed at 11 and since his op his personality and mood swings are so hard to deal with , it really is like being on eggshells all the time and with a toddler aswell it’s sooooo hard , currently waiting for counselling for his depression aswell but everything is a wait and even then I don’t think he will open up much even tho he desperately needs too , schools really hard work and he has lost most of his friends , as have I since diagnosis!?! It’s as if people don’t know what to say or even dare I say it get bored now it’s new and shocking anymore , lt is a really lonely and shit road and I’ve found more kindness in strangers with similar issues tbh , if people don’t get it they realllly don’t get it

Catsandcheese · 26/02/2026 18:23

Bless thank you for sharing. My daughter looked into travel insurance and it was prohibitively expensive..
We have a big family and for the past few years we have taken everyone away for a week or so to Europe in the summer for us all to be together.. in fact we had to cancel last years because of the tumour.
So we thought ok lets try again this year assuming all is under control but the insurance was £thousands..
I think this will reduce once the shunt has been in place for more than 6 months so is clearly working but I have no evidence in reality to back that up.
Hopefully we will do a week in Devon or Cornwall this year though, very happy to do that. I think we would all like that 😀

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Catsandcheese · 26/02/2026 18:29

@BlackSwan the mid 30s daughter requested a CT scan rather than MRI so they didn’t have to inject the dye! She ish9nestly embarrassing but at least I can walk away and leave the professionals to deal with her, which you can’t do when they are small.
@YourRubyMaker we have found the same, nobody knows what to say and they like to put some distance I think between themselves and the patient. It’s so sad. I often wonder what would I have been like if my best friend’s child had been diagnosed, and I like to think I’d have been better than my best friend has been to me.

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Somuchgoo · 26/02/2026 18:43

We've found the same with insurance.

It's like, is there a brain tumour - yes
Is it/some of it still there - yes

No travel for you!
It at least it's expensive because the algorithms don't take the type of tumour into account enough.

We found one which was actually sane, so we did manage to get abroad a couple of summers ago. But long waits for results, small amounts of growth etc means it's then been too difficult (or at least I don't have the bandwidth to do battle and sort it).

Then it's that they won't cover you if you are waiting for results - like when are we not? It's either waiting for scan results, or other tests whilst they try to sort out the other stuff that goes alongside.

We are hoping to get abroad this summer, but I need to check when her next scan is first as it'll have to be before that - if it's after, and it grows, they might cancel insurance. But that's assuming these bloods don't throw up the need for more tests in the meantime 😂. I'm bored of the UK now.

I know it's a small thing in the grand scheme of things, but it feels claustrophobic. With a shunt though I wouldn't risk it for a while.

Catsandcheese · 26/02/2026 18:51

@Somuchgoo Thank you. Yes I think we will stay in this country within spitting distance of the hospitals that can help us for the foreseeable future. And that’s fine. We have been very lucky over the last few years so I’m ok to stay here and you and your family can get abroad 😃 I hope all the gods align to allow it to happen for you.
Editing because my spelling is abysmal and autocorrect is just making things up!

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BlackSwan · 26/02/2026 19:12

@Catsandcheese I believe it! Contrast apparently has a taste when they inject it.

Catsandcheese · 26/02/2026 19:17

BlackSwan · 26/02/2026 19:12

@Catsandcheese I believe it! Contrast apparently has a taste when they inject it.

I have been told that too 😂😂😂😂

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islanddays · 26/02/2026 19:17

I am so sorry that you are all experiencing struggles so far down the line. My son is newly diagnosed and we have our first appointment with the consultant on Tuesday.
I may leave this thread for a while as I'm not really ready to hear your experiences just yet.
I'm so glad you all have this thread to support each other and it helps to know it's out there.
Best wishes to everyone for now. X

Catsandcheese · 26/02/2026 19:29

@islanddays I hope the meeting goes well and you get some answers that help. Good luck xx

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