Hello.
I am Julia, I am 22 and my mum was diagnosed with a stage 4 GBM tumour in October last year. She is 52, she had a very busy and stressful lifestyle as she was a nurse on the emergency ward in hospital, and also taking care of my little sister who is 5 amongst lots of other things.
I feel such unjustness and frustration and sadness that this has happened to her and to me and my whole family because she doesn’t deserve it (no one does.)
last October when this all started I was at work, and I got a call from my older sister to say that mum has had a scan at the hospital because she’s been feeling unwell, having headaches and nausea and couldn’t write her name at work. We then found out it was a tumour and then a week later that’s it’s a stage four brain cancer. Mum always said she wanted treatment and wanted to fight, so we got her through two rounds of temolozomide. Every time she went to the hospital because first time she had her first seizure and second time also she had a seizure and delirium from a UTI. This was the most scary time for me, every day was us worrying and fighting and it was all so new and seeing her having a seizure and having to call the ambulance was the most horrible thing I’ve ever had to witness. She declined a lot from the chemo, she is now bed bound and cannot talk just grunts and sleeps most of the time, is not eating as much. Her gaze is faraway and she is not as responsive anymore to me and my sisters talking.
It’s been a really difficult time, even though I feel like we are all processing it a bit more now. We just want to give her the best care we can and support her and make sure she is comfortable and at home with all of us. We’re a family of girls, my dad isn’t in the picture and it’s me and my three sisters. My mum has always been our inspiration because of how strong and independent she is. I can’t keep thinking how unfair it is she was dealt this card, she had a very difficult life and the last thing she deserves is being bed bound and unable to talk, it really pains me. My little sister is going to grow up without maybe remembering her well and her asking questions like why is mummy not talking is heart wrenching. Anyway I have been looking at this forum since mum got diagnosed and reading other stories has helped me see that others are also in this situation. I am so angry that there is nothing more that can be done, that treatment for brain tumours hasn’t progressed, that there wasn’t many warning signs and it was the worst case scenario right from diagnosis. I just hope we have some good time left, it was her birthday in February so we got to spend that together and now Easter. I just wish she wasn’t taken away from us all so soon, I am only in my twenties and she has so much to live for.
thank you for reading this very jumbled mess of my thoughts and feelings, it means a lot and love to everywhere here who is going through same or similar things, I wouldn’t wish anyone to have to go through this ever.
julia xxx
