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
Hi Julia,
Welcome to the group, I'm so sorry to read about your mum but I am glad you found us. My wife had a GBM and died last month aged 49.
I read your post yesterday on the train and it really touched me. You are quite right that all of this is very unfair and cruel. It's very difficult not to be bitter and angry that anyone (let alone someone we love so much) has to suffer this awful disease.
I can't really offer much comfort but the thing that keeps me and my two teenage boys going is remembering how much brighter my wife made the world while she lived and trying to do the same every day. I think that's all we can do because none of us know what's coming round the corner.
Macmillan produce some guidance on talking to children about cancer and loss if that responsibility now falls to you or another family member. Talking to children and teenagers booklet | Macmillan Cancer Support and Preparing a child for loss | Macmillan Cancer Support
Please know that you're not alone and this group has been amazing support for me and others to ask for practical help or just to express how you're feeling to people who really understand.
Sending a virtual hug,
Chris
HI Julia
a warm welcome to the online community. So sorry to hear about all that is going on with your mum. Life's too cruel for words sometimes.
I supported my husband through his GBM for just over 3 years (gist of the tale is in my bio). He passed away five months ago. My kids are 26 and 24 so my heart breaks to think of you and your sisters going through this.
Chris has already covered off most of the key points I would suggest but I would strongly suggest speaking to your GP to get the community nurses and local hospice team (if there is one) on side. Even knowing that there is someone on the end of the phone 24/7 lifts a lot of the stress off. i can't sing the praises of our local nurses and hospice team high enough. They were angels.
Please try to take care of your wee self here too. Please don't underestimate the toll this is taking on you.
Remember we're here for you all anytime. This is a safe and supportive space as you've already seen. You're not alone. We've got you. The helpine is also only a call away too . Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.
for now though I'm sending you all a huge virtual hug and lots of positive energy
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
