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!

Former member of the BT club here too! 💐for all of us, patients, survivors & family members.

I would say if you're waiting 3 weeks for scan results it's not URGENT, although I do definitely understand how horrible and stressful it is to wait. I got a call back 6 hrs after my first MRI, and was on the operating table within 24 hrs. The radiologists definitely take a quick look at the results and move some to the urgent pile.
🤞crossed for everyone awaiting results at the moment.

The first scan was only hours but now we have to wait for results to do to mdt meeting before we get told so scheduled results app is 3 weeks whatever the results so it isn’t a indicator of anything unfortunately and was explained to me as such too , they don’t even get the scan until 7-10 day to review at the mdt meeting

We have waited up to a month at times for scan results so I completely know where you are coming from regarding the wait. It’s always been 3 to 4 weeks for us here too. I follow a girl from Ireland on instagram, she is in her 6th year of being diagnosed with a glioblastoma. She gets her scan results within a few days as well.
DH has had the odd headache recently which has me worried - it’s hard to separate stress from anything more serious.

I feel for you also , I asked my sons oncologist that if it was bad news would he call me sooner and got told 3 weeks is the absolute earliest opportunity!! Crazy as like you say in other countries it can be next day results , just adds to the stress of a impossibly stressful time as it is , we’ve just had one so 3 weeks and hopefully we will be back to being able to breathe again for 3 months I hope it’s the same for you

Yes and no. It was 20 minutes after the first scan we got the results and operated on 16 hours later on a different hospital. But the follow up ones for the remaining tumour are the ones that take a while. I assume if it's pinged back to full size we'd never ever leave the hospital (always a relief when we leave!) but we've waited 2 months to find out there's growth before. Not dangerous levels of growth, but if sustained mean more surgery. So a delay isn't always good news, it just means not catastrophically bad!

Oh wow, sorry I have been working today so missed so many replies. It looks as if there are a whole bunch of us with similar issues. My daughter ( sorry to be confusing with the they/their nonsense, just didn’t want to be outing but actually who cares!) has a grade 1 Astrocytoma which has some genetics that can potentially be treated but she was unsuccessful in getting on atrial that could have helped because they wanted to do another biopsy. The surgeon did not recommend this so we wait and see.
I’m so sorry to hear others stories @Musicaltheatremum I’m so sad for you and your children.
Maybe this thread is a good place to just chat! I’m happy for it to be used this way and am also happy to find others in similar situations as I’m currently going about my day pretending everything is fine and inside I’m drowning.
My daughter has had only 2 MRIs so far, the first in hospital when the thing had been discovered and the second at the end of January. In hospital, the results were next day I think but this January it was a wait it about 2-3 weeks. She has had a shunt fitted to deal with the CFS which can’t now drain and that has failed 3/4 times so we have back and forth to hospital getting that sorted. It looks like it’s working now. But they say you can’t be sure till it’s been 6 months without a problem so we have 3 more to go 🤯. She’s had about 25 CT scans as every time she needs the shunt fixing that’s 2 plus a couple of other trips where she thought there was a problem and there wasn’t .

If people want me to, I could ask MNHQ to change the title to BT Survivors Club so we can share stuff not related to me and my holidays😱

Our problem is separating a headache that’s from a cold/stress or some other mild issue from the ‘big headache’. Additionally she was told to get to A and E for any headache that does not respond to paracetemol so we are all over the place if I’m honest

The problem we had was getting medical staff to appreciate that the ‘headaches’ are not usual headaches. My daughter’s ‘headache’ was in fact Chemical meningitis caused by the rupture of her brain tumour. Her pain was so intense she kept passing out. Unfortunately it was only after I took her to a private consultant in London that this was diagnosed. Walton specialist in brain tumours failed to see the ruptured tumour on MRI. Because the tumour is wrapped around blood vessels at the base of her brain it can’t be removed but is likely to grow and cause loss of sight, movement etc on one side . A knock on the head could cause it to rupture again, I feel like I want her to wear a crash helmet constantly. Anyway we are very thankful it hasn’t become cancerous. I always contact consultants secretary for results of scans, blood tests etc, they tend to speed things up for me.

Would definitely appreciate that my son isn’t a adult but nearly a teen so not too dissimilar

My 27 year old son has just been diagnosed with a brain tumour. We don't know what type yet and he had a full body CT scan today to see if it has spread. We have a long road ahead and are all dazed.
He lives at home with us. He has autism and we do a lot for him. Luckily the doctors have been good so far talking to us together.

Hello BT peeps. I recognise a couple of you from the children's health pages.

@Catsandcheese I'm sorry about your daughter's diagnosis. The early months after diagnosis are really tough - I hope you're coping ok. Fingers crossed the shunt keeps working for her. There can be a lot of fine tuning.

My son was treated for craniopharyngioma age 3 - fortunately he has been stable since he had proton beam therapy age 4. He's got many hormone deficiencies/on lots of meds but is doing really well medically & generally. He's 16 now and transferring into adult care.
DH and I went away alone (overseas?!) for the first time ever for a whole 2 nights last year, which was a big mental leap. He was in safe hands but I was in two minds about it. I also 'allowed' DS to go on a school trip to Italy, reminding myself he can't be wrapped in cotton wool... only to have him fall ill while he was away - that was pretty worrying.
I don't know what the future holds but if he decides to go to uni close to home I would be very happy. I've told him when he's older he needs to choose a partner who is medically trained 🙂. Even a dental nurse or a vet 😂

I have reported to mnhq to see if we can change the name.

So my daughters headache relates to cerebral fluid build up and also is nit a normal headache either. Your issue sounds awful and I’m glad you got a diagnosis.
I totally understand the desire for a helmet. Xx

I am so sorry to hear that and I sincerely hope you get answers soon. Please feel free to ask any questions you might have.

@BlackSwan thankyou for posting. I totally understand where you are coming from and you’ve been through the mill for the past however long. I hope your son remains well and meets a vet/doctor/pharmacist to spend rte rest of their life with 😃

Thank you @MNHQ for changing the name of the thread. I am very happy for people just to add their experiences or vent. I hate hate hate this condition/disease and have felt totally alone since we found ourselves in it a few months ago. Until I made this thread and found other people in similar situations.

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.

@GentleGoose
i hope this little thread helps you to realise you are not on your own. My daughter is mid 30s too, it’s way too young to be dealing with this. At least I’m her mum not her partner!
I can see there’s no support available, I’ve had none, and I am exhausted now. I’ve not asked for antidepressants although I was on the verge a couple of months ago.
Do you know whether your husband’s moods and memory will improve with time? I can see some small changes in my daughter’s personality, just less attention to detail type stuff, but I don’t know if I’m over analysing.

Over analysis is a way of life! As is second guessing yourself.

Small win here today, she has some bloods and the two horrid wee and to convince then into one (maybe) blood draw. Stress beginning increasingly anxious with needles as thankfully she didn't have them off three days, but I think they bring back subconscious trauma. She's 6 so too young to be and to fully traumatised things and if through fear, but old enough to have awareness and make things difficult to have them (like barricading herself in her bedroom this morning). I'm glad we don't have to go to the second hospital for them.

They aren't even about her tumour, but side effects of everything (relating to about 3 different areas, hence why so many vials).

She's an awesome kid.

And yes to the behavioural stuff, though for us because she was young when she was diagnosed it's a bit like the terrible twos never went away. We don't t know how much it's her, and how much is brain. I guess it doesn't really matter. Handle like glass!

DH got diagnosed 3 years ago. There has been a slight improvement in his moods, but it can still be like walking on eggshells at times. He is also taking keppra for his seizures which has been known to cause mood swings. I now see a much more vulnerable, less confident and almost childlike side to him (in regards to his inability to do simple tasks and his lack of initiative) which was never there before in the 20 plus years we have been together. He finds it hard to socialise now and barely leaves the house without me which is a vast contrast to before this. I love him a lot but it can be very draining and it’s hard no longer having someone looking out for me iykwim.

We managed to go away on a family holiday last year, perhaps that is something you and your daughter could do in the future? It was lovely to escape from it all for a week.

@GentleGoose When was your DH diagnosed? It's so tough in the beginning. In the first year I was in shock mostly. Running on adrenaline and in utter disbelief. Try not to lose hope. I've been on antidepressants for years - they have made a difference for me - but things are a lot more steady since the early days.

Do you have kids? It's very hard either way, for different reasons.

@GentleGoose sorry I just read your update. I see it's 3 years.

Who do you have in your life supporting you in all this?

Blood draws are anxiety inducing for kids & parents alike. Mine used to scream bloody murder poor thing. Got easier over the years, now it's nothing of course, but I feel bad for the little ones.