GBM4 and me

Greetings to all on here.

I'm 58 and was diagnosed with GBM4 last year. I had no symptoms until I had a seizure in mid April 2021 and it was quickly established that I had a brain tumour. By the end of April I had surgery to remove it (this was very successful so I count myself lucky) and within a few days, the histology report concluded that I had GBM4. My surgeon told me not to Google it but of course I did that as you just have to! Not very nice reading at all and we all know that it's a poor prognosis. Anyway, I have had the full menu  since then - 6 weeks of RT and chemo and then another 6 months of adjuvant chemo (5 days on, 23 off) all of which was tolerable even if the stronger chemo dose at the end of the process, made me feel a bit unwell at times. 

Next week I have a follow up MRI scan and then a consultation with the oncologist. Obviously I'm hoping for a positive outcome but one thing I have learned is not to assume anything. 

I have found it helpful to read the various threads about GBM4 and interesting to see that many contributors are anxious loved ones, not necessarily the patient. You can see that it is very hard for families to know what to do and how to help the person with GBM4, and also that it's not only the patient who might need to talk and seek support. So an online community like this can be a great way of sharing experiences and realising that you're not alone. 

In my experience, a GBM4 diagnosis is quite shocking and hard to come to terms with. Sharing the news with family (I'm married with 3 children all in their 20s) is hard. Nearly 9 months on I'm doing OK and feel pretty upbeat although I know it won't be so easy, if or when the cancer shows itself again. I don't think too much about the long term and I try not to worry about things that I can't control. I focus on things that I can control - spending quality time with my wife (who looks after me so well!) and family; trying to keep fit by running a bit and trading my car (which I'm not allowed to drive) for an electric bike, making short term plans and 'doing stuff'.  

I have had loads of help from Macmillan and I know that if I get really ill, they will support my family to take good decisions about care plans and so on. These are not nice things for me to think about but knowing the family will get good support, really helps. I also find that it helps to count your blessings: it's not nice to contemplate having to leave your family much sooner than you had planned, but I am lucky enough to have got this far in life without serious illness and I have had the privilege of having a long and happy marriage in which time we have raised 3 fantastic kids. I read of people much younger than me (sometimes very young children) getting GBM4 and know that there are always others who haven't had as much time as I have, to enjoy life. Even then, the positivity and determination shown by young GBM patients can be inspiring. 

I don't know if this helps others in any way but it helps me to reflect on my experience and how I have got through it so far. Thanks for reading, and I wish all GBM patients and all their loved ones, the strength to keep going. 

Dave