A place for people affected by brain tumours or brain cancer to support one another...
Hello this is a long story so please be patient, my mum and dad always lived in a flat and wanted a bungalow for so long in fact they waited on council lists for years! End of may 2019 could hardly belive their luck when they were offered one, unfortunately in the process of moving early June my mum had an out of the blue seizure in the car this is when our whole life changed, she had a cut and MRI scan which revealed a brain tumour she was referred to neurosurgery and he advised removal immediately mum had this done early July 2019. She recovered so well and the surgeon managed to get 95% resssction! After an agonising two week wait she has an appointment for oncology this is when we found out the devastating news mum has gbm grade 4. She started a oral course of chemotherapy straight the way and was due to start radio end of July 2019. Unfortunately my poor mum contacted sepsis and this was unable to go ahead, she braved through like a fighter and came home from hospital last Thursday, the oncology sister telephoned on the Friday and made my mum aware she was due to start her radiotherapy on the Monday just gone which was the 23rd August, my mum initially was led to belive she was having 6 weeks Monday to Friday but on going they changed this now to two weeks every other day! This has left me feeling very confused can anyone shed some light?
Hi, I'm sorry about your mum. My Dad was diagnosed with GBM 7 weeks ago too. They said it was inoperable and offered 3 weeks of chemo and radiotherapy as they thought because of his bad chest, he has bronchiectasis, that 6 weeks would be too much for him. Maybe they think your mum is not well enough at the moment to have the full course? He's finished his sessions last week and the neurologist is calling next week to see how he has been, then we are having a review at the hospital in 3 weeks. It's been such a stressful time! Take care
Thanks so much for your response! I’m so sorry to hear your family are going through the same thing. Your right it’s so stressful and heartbreaking all at once, maybe your right and mum isn’t strong enough at the moment, I’m keeping everything crossed for you that the review goes well for your dad and both of us hear good news, I just find it so difficult to take in that this is incurable, have you got close family to help support? Take care x
It's nice to be in touch with someone that is going through a similar situation, although I'm sorry you are going through this too. It's so lonely, frightening and we are doing day by day at the moment. I have a small family but I'm now the main carer for both parents. Up until Dad's diagnosis he was my Mums carer, as he can't do that now I've picked up most things. If you want to message me anytime, feel free.
Could be that the shorter course of radiotherapy is palliative as it cannot be cured.
You would've been given the Nurse Oncologist telephone or email to contact. They will address any issues or answer any questions you may have. They are very good and knowledgeable and if they don't have the answers they will find out for you. Don't be afraid to ask them anything however big or small. They are there to help. X
I am so sorry and saddened to read your story from your profile. It's very sad and although the doctors have statistics they go by no one can say how long one can live with this disease as everyone is different and everyone's tumour behaves differently.
You are right to take each day as it comes and make sure your parents do everything they want and are able to do as these will be the memories you'll treasure in years to come.
You are in the right place here to get the best support from.people in the same situation.
Take care x
Wow that must be incredibly hard for you, do you have anyone to support and look after you? X
Hi mad thanks so much for you input my dad has the nurse oncologist number but unfortunately he’s in denial at the moment and just can’t come to terms that this is incurable, he seems to think she will at least have another ten years it’s so incredibly difficult xx
Hi Mad, thank you. Getting beyond the practical stuff like making sure he eats, washes, takes meds, rests and just getting through each day. I'm sleeping at my parents home now as Dad refusing to go upstairs. Actually, although really tough as I have kids at home and work too, I'm quite enjoying that quality time alone with him. We have a routine and he's comfortable with that. Just hoping I don't burn myself out though, what good would I be to him then!
Wow your an inspiration to be able to manage all this, please be kind to yourself have you got someone to take care of you? I have 3 small children and my husband is self employed so can’t lose much time from work so it’s incredibly hard xx
This is now the time to muster all the help you have been offered. Try to not get offended if people offer help. ....it's not that you are not coping well. ...it's their way of trying to help. If they want to cook a meal and bring it round say 'yes please '. This is the only thing they can do. They like us fwel helpless in this situationand want to help in any way they can .People always come together at times like this and often our pride gets in the way so we decline the help but we should accept it as it makes us all champs in the end. X
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