Hello, I suffered a stroke at the end of June and lost the left side of my body. Due to additional reduced mobility they ran scans and found a tumor(gliosblastoma highest grade still not sure what stage that refers to and. i may be sticking my head in the sand a bit) I'm told that various things: my age,im 38 , the fact that it's a cystic tumour and that it's methylated are all in my favour apparently. I'm finding it really hard to stay positive as I have two young children. I've completed 30 sessions of radiotherapy so far nd have more chemo lined up in 4 weeks time but any tips on how to stay upbeat for the 6 weeks I have to wait until my MRI would be welcome
I've been put forward for the optune trial but on further research it seems that the positives were adding an extra 4 months to life expectancy which doesn't seem a massive selling point. Has anyone been through this trial or can someone re share any positive news stories from trials that may be open to
Hi Popsi
a warm welcome to the group. So sorry to hear about all that you are going through.
I supported my late husband through the three years of his glioblastoma journey so I can empathise with the emotions you are going through. He was 50 when he was first diagnosed and our children we older (20 and 22 at the time)
After the 6 weeks of oral chemo/radiotherapy, G declined all offers of further chemo and opted for quality rather than quantity of life. It was his decision to make and one I had to respect. He was a marathon runner and his fitness was the key thing that kept him going. His symptoms were cognitive rather than physical so he continued to run until the last few weeks of his journey. He set PBs at all of his competitive race distances up to and including marathon two years after his initial diagnosis. He was first diagnosed in Sept 2020 amid all the covid restrictions but once these were lifted he travelled as much as he could. He went skiing in the French alps with our daughter. He spent a week in Paris with me. He went on various boys' weekends with his three closest friends (I didn't ask too many questions about those) He was also lucky enough to get involved in series seven of Outlander when they needed someone to row a boat for them.
What I'm trying to say was he lived life as best he could for as long as he could.
He had three monthly maintenance MRIs throughout his three year journey and he did get anxious and cranky in the run up to those. Scanxiety is real so please don't be dismissive of it. At one point he did ask if they could wait 6 months between scans to reduce this anxiety.
Everyone copes differently here as everyone's situation is unique. There really is no right or wrong way to cope.
This is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.
It’s always good to talk so please remember that you can also call the 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 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
Oh that's a shame that you weren't accepted for those trials. Hopefully something else will come up.
Take this journey one step at a time. Carpe diem!
sending love and light and hugs and positive energy.
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
