Hi All,
I'm, new to this forum. I was diagnosed with a Grade 4 Glioblastoma 4 months ago August 30th. I was a very fit 61 year old man when I had a seizure whilst having a bout of covid which. Long story short a CT scan showed a thumbnail sized tumour at the back of my brain. We were not really concerned as it was tiny but following surgery genetic testing showed it to be a Grade 4 methalayted tumour.
I've just undergone 6 months radiotherapy with chemo by pill. Compared with other people I feel very lucky - it was caught very early - and my prognosis falls into line with the averages 10-24 months. It's very hard to believe that the week before diagnosis I had just walked nearly 120 miles across the Yorks Dales. I have fabulous support from both family and the Oncology team at Carlisle.
My approach to dealing with this prognosis (and it may not work for all) is to face it head on. Talk openly and let your family talk openly to you. We engage in lots of laughter and black humour and it's my aim to leave them in the best emotional sate possible. Coming to terms with my prognosis has both hard and easy. Ive had a good life got a wonderful family and I think it's harder for the survivors than the patient.
I used to fear death but I don't now (it happens to us all), We knew nothing before we were born so why should we after our death (this works for me). What I do fear is the manner of my death and I have to say our GP has been brilliantly reassuring as with the Palluative care team. I'm really happy to keep posting on my experience whilst I can. In the meantime best wishes to all of you whether patient family or friends we have a lot to be thankful for.
Just one final thing. My Mum died of the same tumour type 22 years ago at the same age. The professionals say there is no hereditary link and no research is being undertaken. My GP has taken a blood sample (to bank) for a time when research is commissioned. Does anyone else have a similar experience.
HI Ian
a warm welcome to the group and thank you for sharing your story.
My husband then 50 was diagnosed with a GBM4 in Sept 2020. He too was very/is very fit. He's a marathon runner and in fact his first symptoms were a "funny turn" while out running. Fortunately ( although its cruel in its own way) his tumour (now tumours) has caused cognitive rather than physical symptoms so he can still run. he's run 2750 miles this year! I have no idea how he's doing it.
HIs mum too died of a primary brain tumour way back in 1993. Unfortunately we couldn't access her medical records to see if it was the same type of tumour - it was just too long ago and the records weren't available. Like you we too have been told there is no hereditary link. I do wonder though....
The only similarity I have noted is that before her diagnosis and throughout my husband's, they craved salt.
This group is a safe and supportive space , as is Glioblastoma multiforme brain tumour forum - Macmillan Online Community so please reach out anytime. There's always someone around to listen who gets it. You're not alone
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.
Hold onto that positive attitude and that dark sense of humour.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
