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

[Catsandcheese]

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!

I'd feel the same. But a few days should be ok - you seem to have other relatives - would any of them be willing to be on call whilst you're away? How does your child feel about it?

I'm the parent is a young child with a low grade BT. Mostly removed but she's on watch and wait for the remainder. I totally understand your feelings of hyper vigilance and fear of planning ahead. It's taken several years (and mostly stable-ish scans) to be confident enough to think about holidays abroad, but time has helped.

I'm not going to say what you should and shouldn't feel comfortable with, everyone's comfort levels are different and every brain tumour (and patient) is different.

6 months is very new. It doesn't feel like it now but you're still in the initial leaving how to cope phase. In time there'll be a new normal and you'll adapt to that and your vigilance will drop - though never to how it was before.

Low grade doesn't mean it's not terrifying, or dangerous, and I don't think people always realise that. We live scan to scan. We panic at every weird behaviour or spiked temperature. It's better than a more aggressive tumour, but almost intolerably stressful still. Him being an adult doesn't make him any less your baby, or any less worry.

The brain tumour charity do zoom chats called 'living low grade' which may be useful in terms of support for him. Or it may feel a bit much now but with being in mind for the future.

What I will say though is that taxis and ambulances exist for a reason and it's ok to have a drink if you feel comfortable as there's a good backup plan in place. Take adjusting to the diagnosis at your own pace.

Thank you @Hopefulsalmon , yes we do have other relatives but they’re the ones asking us away.
I do have other children but they’re are both married, one is pregnant and the other has some other dramas going on
I just feel happier being here myself but it’s like people are losing patience with us.

@Somuchgoo
Thank you so much for your words. Everything you have said makes total sense to me.
Everything has been so hard to take in and everybody in our wider circle thinks benign = fine.
I can only imagine the sheer terror being the parent of a young child. I’m so so sorry for your situation. Scan to scan as we are learning is hard to take.
I’ll take a look at the zoom chats from the brain tumour charity, I feel like we could do with some support.
thank you for posting

Thanks.

I agree. I absolutely detest the word benign and am so glad it's not used as much these days. It certainly doesn't mean fine!

My child would have died within weeks (possibly less) had they not operated and she was in hospital for a couple of months. Some people here benign and think of it like a big wart rather than a life threatening condition which is often managed with massive surgery, chemo, radiotherapy etc. They also don't realise that leaving it doesn't mean it's ok, just that the risks of removal are greater right now.

The big saving grace for my daughter is that because she was a toddler, she doesn't remember the hell that she went through. It was horrible, but I imagine it would be worse in some ways with an older child or adult as you are managing their fear as well as your own.

There are also parent support groups on FB. They are aimed at parents of kids, but I'm sure it's open to anyone needing support.

It sounds like you're doing a great job of keeping an eye on him. You've got this.

My husband had a low grade glioma. We lived a very full life going on holiday for 12 years until sadly he died. Once things are stable you will relax and it will become a new normal. My husband's family were no support to me at all. His mother was in her 80s but his brother could have helped.
It took me several months to come to terms with things. Does he have a partner? If he does then no reason why he or she can't look after things so you can go away. Wishing you all the best it's a horrible illness.

Oh my goodness @Somuchgoo It’s such a terrible thing, you have my heartfelt sympathies and hugs. I wish the very very best for your little girl and hope the tumour stays hidden and growth free forever. Xxx

@Musicaltheatremum I am so sorry for your loss. My heart is breaking for you.
My child has no partner but they do have siblings but they also have stuff going on.

Another one here with a child who has a low grade glioma. It’s been 6 years since diagnosis and the first 18 months were v turbulent. In the situation you describe, I’d be reluctant to be further than a couple of hours away too. Alternatively, could you time your holiday with the next scan results, and then presuming all is well, you’d then feel able to go?

I can’t (yet) imagine what it’s like to parent an adult child with a brain tumour but I know how fragile it all feels particularly when there’s a history of hydrocephalus and sudden growth.

@banabak Thank you also for.responding. Do you know I’ve said to myself I wish they were a child so I’d get to he information directly! I think on balance thus year is too soon for holidays, maybe next year will work. I’m still too scared at this point.

thank you all for taking the time to answer , it means a lot. I feel a bit lost

I think you should go on holiday. A break will no doubt do you the world of good and give you a boost so you can be positive for your child.

A curious question from me (don't worry about responding if its too intrusive) - will your child be facing surgery? I assumed all brain tumours in younger people would be removed. Is that not always the case? Can you survive many years without surgery if it is benign?

@mjf981 it all depends on the type of tumour and where it is inside the brain.
Ours is in a tricky place but they were able to operate to sort out the fluid build up which was the symptom that caused the trip to a and e.
So currently pain free which is good, but living in fear of it growing again. Radiotherapy remains an option should that happen, but they don’t want to operate any further due to risks involved.

I’d be honest, explain to family you don’t feel comfortable going away at the moment and ask them not to pressure you.
They probably don’t realise they are making a difficult situation harder.

My son has a brain tumour and il say it’s just bloody awful , we’re coming up to a year since diagnosis and my mental health is not good atm . It’s a lonely road aswell that nodbody gets , we’ve just had a scan and now the dreaded 3 week wait . I’d say give it more time and possible plan it so you book after scan results to give yourself peace of mind

I also DETEST the word benign and how everyone assumes it will all be ok now , it’s cancer just not a high grade

I am sorry for you and your family member. My daughter has a brain tumour and we went through hell and back during her first 12 months of it being discovered. I resonate with you totally regarding not drinking in case of emergency, I. never ever have more than 1 alcoholic drink and that is very rarely. I also have elderly parents and should they ever need me I want to be available any time day or night. I have ptsd from the time my daughters condition developed and the unnecessary pain she went through due to the medical response, it is extremely stressful seeing someone you love go through pain and emotional trauma. My advice is to do what you need to do to feel in control. In time you may feel more relaxed about not putting your family member first every minute of the day. It is all very new for you. I do what I want and if I turn down family events then it's my choice. I hope things get better for you soon.

Thank you all. On balance I think I’ll not travel this year.
@YourRubyMaker I hope the scan results are reassuring, the wait is torture. @Username3333333 thank you I totally agree, I thought we all had ptsd from the time at the beginning before diagnosis and while all the surgeries were ongoing.
Actually I’m very glad I have posted here, I have been feeling very alone. It’s not a nice club to be in. But at least we are not as alone as we thought!

Cancer household here, though not a brain tumour.

Six months post diagnosis is no time at all, you’re still processing it all at that stage. I think in your case I’d say to people that I probably wouldn’t travel for at least the next six months and just see how things stabilise.

Longer term, it would be good to think about a wider support network- whether that’s other siblings once theirs own lives are a bit more stable, or your child’s own friends etc, because apart from anything else you could have flu or work commitments or just need a break, so it makes sense to have back ups, but all that takes time to build and it’s ok that you’re not there yet.

Wish you all well.

I agree with this. My husband's was a benign grade 2 astrocytoma but it affected him so much. He had a lot of focal seizures and then radiotherapy which helped control the seizures but over time caused mental slowing. He was a lawyer at the peak of his career when diagnosed aged 38 and had to stop work at 40 due to mental slowing. I had 2 young children. They have really been affected by it although they're great now aged 30 and 32.
It's 26 years since my husband was diagnosed and treatment really isn't any further forwards.

It hasn’t moved at all unfortunately it’s really underfunded it’s actually disgusting, how is your husband now ? Yeah my sons been massively affected and obviously our worlds been turned upside down but we are expected to just go back to normal , awaiting scan results now and it’s always so scary and they make us wait 3 weeks

We are 3 years into my husband being diagnosed with a grade 2 astrocytoma…3 years sounds a lot but we feel like we are only coming to terms with it now. His mental health really struggled for the first 18 months. All I can describe it as is living from scan to scan. There’s no more planning for the future or taking things for granted. His tumour is in the left frontal lobe and surgery has affected some of his behaviour too which makes life hard. It’s scary as this wasn’t the future we had planned for us or our kids.

All I can say is take things one day at a time. I agree with other posters, 6 months still really early for adjusting to things. Best of luck to you and your son ❤️❤️

I’m so sorry @Catsandcheese it is an exceptionally frightening and lonely time.

my son was diagnosed with a very aggressive brain tumour just before he was 16. This meant that we knew all details and were able to make all choices for him when he was unable to discuss them himself. The only time I left his side was when his dad took him on holiday (and I flew to a country nearby so that I was still close).

other people suggesting time away is coming from a place of love for you as they have no understanding of the pressure you are under. Where possible try to explain but that in itself is exhausting. its not possible to switch off the feelings of fear nor the trauma that you have been through and are still going through.

i hope your son’s treatment is gentle. Sending love.

@YourRubyMaker sadly my husband died 14 years ago next month. He was 50. Lived with it for 12 years. Waiting for scans was awful although I got to realise that if something was growing or changing then symptoms often developed. We used to get the scan result the same day but they changed this to within the week. This gave more time for the team to discuss the results and make plans before they reviewed you. Three weeks is awful to wait.

I’m so sorry about your husband , my son has the same tumour and I’m so frightened constantly and praying they find treatments before his grows again , albeit unlikely Hope is all we have , yes it’s always 3 weeks whether it’s good or bad news it’s so hard , people really don’t understand how horrible brain tumours are and it really needs to be addressed and desperately needs more funding for treatments

My daughter's is 'only' a 1 (that's bad enough). The quickest we've heard is 5 days, usually it's a couple of months! In other hospital with the same tumour it's about 2 weeks. It doesn't matter if it's good or bad news, it takes ages. It's hellish.