Glioblastoma

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Hi all,

This isn't the first time of writing but I'm scared. Mum's having her scan on Tuesday and results Friday. She was diagnosed with a Glioblastoma back in September, had a 5 hour operation and radiotherapy. The scan was clear at Christmas but now its time to see what's happening. I hope so much that it hasn't changed but I'm scared for her and me. The Doctor seems pleased with her, some people she said beat the odds. Today fir the first time since before the operation her eye was playing up seeing things again like someone's standing there out the corner of her eye and they are not. She's tried and stressed and I tried to reassure her that it's just that, got a big week to come. But in my head I'm so fearful this bloody thing has come back. If it has she will start chemo tablets. You read all this stuff of what might come. She just doesn't deserve this. Is anyone else going through this with someone with a brain tumour?

I got engaged at Christmas and so want mum to be there even if its just a quick ceremony at the registry office. She's so happy for us and I hope it gives her some joy out of all this. I was wondering if anyone else has tried to arrange a wedding with a loved one with cancer and has any advice. We just want it to be about commitment and family. I don't want bells and whistles. We want to do it before mum gets too poorly.

I'm sending everyone stength and love.

FlowerGirl x

src60 10 months ago

Hi Flowergirl01

You are feeling totally normal - we sometimes refer to this on here as scanxiety and sometimes if we can recognize that it can help us contain the feelings - a bit at least.

I am sure your mum will be so glad to see you are happy and have someone beside you. One thing perhaps, if she is able, would be to get your mum involved in the planning of the wedding.

Hopefully the results will be great and if there is something then the chemo will deal with that. I hope too your partner is getting the support they may need because this nasty diseases can have a long reach.

<<hugs>>

Steve

Flowergirl01 10 months ago in reply to src60

Thanks Steve x

Eleven11 10 months ago

My mum was diagnosed with GBM in 2019 and been a whirlwind of emotions ever since, I myself read a lot of articles and cases online and in a weird way found comfort in knowing I wasn’t alone and even though I was scared i can tell you now, after close to 5 years of dealing with the issues that arise I can say you will have good days.. always remember to utilise the support of professionals, friends and family as it really helps in lifting the weight off.. take one day at a time and always make sure to look after yourself.

Flowergirl01 10 months ago in reply to Eleven11

Thanks Eleven, It's nice to know I'm not alone. First we were told 3-6 months and then after operation it's 12-18 months. I guess everyone is different and some people do go over that. Is your mum still going strong ? after 5 years ? xx

Eleven11 10 months ago in reply to Flowergirl01

Absolutely! Every case is different and you can’t predict any single outcome but I can speak for myself in saying we definitely did not expect to get this far especially after reading the available resources online at the time.. I remember coming on this very forum and not having the nerve to chime in due to the uncertainty. I can say everyday has its challenges and she has experienced changes in personality, mobility and temperament but she’s still here with us and with the care and treatment currently available anything is possible.. March 2024 will be 5 years since the initial operation and in that time our family has had 3 weddings and 4 new additions which shes been part of which thinking back seems so surreal. My best advice would be to take it one day at a time and be present for your mum as much as possible and not to forget to look after yourself too. I wish you all the very best x

Flowergirl01 10 months ago in reply to Eleven11

Thank you, you've given me hope. X

Flowergirl01 9 months ago in reply to Eleven11

Hi, I just wanted to let you know that mum's scan results came back and there is nothing there as far as the consultant can see. Next scan is end of March ! We are so relieved! So no chemo until its needed. Its the best news we could of hoped for. Her eye has settled down the consultant thought it was swelling. Thank you again for your kind words everyone on here is so nice.

Take care

Flowergirl1 x

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