It’s always a concern when they keep you waiting after a scan as normally it’s a whole weeks wait.
It’s been about 7 weeks since my last scan showed the return of the Glioblastoma and the look on the face of my oncologist this time just said it’s serious time Liam. Unfortunately it seems to be back aggressively and taking on its own time scale. So back we go next week to talk to the professor.
I’ve been overwhelmed with the reaction of people especially the on line support of people I’ve never met I don’t know why I attract so much attention and affection but I am really touched by your support.
I’ve seen people I’ve not seen since the late 80’s which is odd. Is it because we are all at an age when we realise our time is less and it intrigues us when one of our peers is in this place. There is a certain amount of there for the grace of god go I in all of us, even the non religious and the usual angst about mortality and illness that comes with our age kicks in for us all. I’m not the only one of my peers going through this change in status thing and it brings us all to a grinding halt and thought of blimey, but actually brain tumours have no respect for calendar years and there are many far younger going through the same experience and looking at an unknown timeline. A perfect example is young Laura, one of the youngest in our community but still one of the most energetic and inspiring and it was great to get a visit from Laura, Nicola and Mark as they continue to be so supportive and giving despite their own worries
In a different way the lads from the cricket club continue to support even though I have had to withdraw from the tour of Spain
Again the waiting for appointments when being terminally ill can be so fraught as your life is decided around you and it puts you back in the holding zone and piles on the pressure for family too and all we can do is continue to live life and in my case wonder if you should get rid of your beard as it feels dried out with chemo this time.
Talking of getting on with life the Red Willow brewery put on a pub Quiz for brain tumour research the other day it was great to see so many strands of my life coming together to support me and Joe brought his entire student house, Reasons to be cheerful formed a team as what would I do without them and Canadian Mike put together a great quiz for us all.
All went well and we raised over £100 for the biggest cancer killer of under 40s in the uk but the one you’ve never heard of.
So back in June 2020 I was told I had a year to 18 months to live with a GBM that’s so aggressive you’re almost immediately in palliative care. I’ve lived beyond expectations but now I have to face the fact that things are now serious after all and the feelings I have now were always inevitable.
The children are in exam times and making decisions about next steps which is challenging enough without having a poorly dad and I can see my own dad struggling with it too.
So that’s an update I now am staying focused on the Bollington brewery walk above and the upcoming wear a hat day on Friday. https://macclesfield.nub.news/news/local-news/macclesfield-bollington-brewery-fundraising-pub-hike-to-benefit-charities-174803
Since starting this blog I’ve been back to see Professor McBain who has done a full check of my physical health and has put me back on the pathway for radiotherapy so feels better to still be in active treatment despite my symptoms.
There is no cure for this disease and treatments haven’t changed in 10 years so funds are desperately needed to support further research and raise greater awareness so please send messages to your local MP and many thanks for continued support and good wishes from as far away as Sunderland and Scotland.