So a full on week. Started with my eldest Joe and I visiting the Brain Tumour Research Centre of excellence at Queen Mary’s London Town. To place some plaques on the wall of hope. Now through you’re generosity we had 9 plaques to place. Each plaques representing £3000 that’s a days research. I chose to dedicate my plaques to my support team and people who I’ve met in the cancer community and who we’ve sadly lost. All of those plaques for the community with the exception of the inspirational Laura, have sadly moved on…Mathew 19 pictured, Daniel 17, Ruby 18, isla 7 and last but by no means least Nate 5
Unfortunately, although we have rare cancers, it’s still the biggest cancer killer of the under 40s in the UK, but we only receive 1-2% of research funding, as there is still not a great return on investment for the pharmaceuticals.
But the thing about being in this community, is that you invest in these people and they become your friends, you share a common bond. Does being a bereaved stepfather and having a terminal diagnosis give me an empathy for others struggles? That’s not for me to answer, but I do know understand what it’s like to grieve and manage a terminal diagnosis.
I have connected with grieving Parents, Grieving Siblings, Grieving extended family members and Grieving friends . Not to mention all the bereaved members of the on line community, sharing bereavement through this terrible disease.
The parent part of me grieves for what could have been and what now won’t be for many of our younger community. Parents grieve their present loss and for the loss of their futures too.
It was brilliant to see the science at work, Joe is a material science student at UoM. I’m already grieving that it’s unlikely I’ll see how He and His sisters Caitlin and Esme, will develop. Grandchildren, I’ll never meet, will Joe be part of the science that frees us of plastics, will Caitlin design the graphics that sell that to the world. Will Esme make a breakthrough in psychology that will help the pandemic of mental health issues within our children. So please watch out for them for me please
Then to bookend the week. In a tremendous emotional moment I got to see one of my oldest friends Ginger Martin. He now lives in Spain and because of the pandemic he’s not been able to see me since my diagnosis. We went to Leeds to meet his Mum for lunch. We then realised it was 30 years since we started together at Leeds Poly. Brilliant to catch up on our children.
Perhaps jen and Martin hadn’t spent enough time together. But afterwards, in a moment a mixture of Martin’s genuine shock at our situation, different in the flesh than on Zoom. Also my stories of Martin’s and I misdeeds back in the 90s, we then both worked for oddbins for many years. She called it as it is. Two men that love each other as brothers, care for each other and now Martin worries about what I’ll miss of my Goddaughter Molly and his other lad Harry future . As well as us in our 70s having a Sherry on a Huesca terrace, to quote the great Bruce talking about the Glory Days
So a week of very mixed emotions, we have a difficult week ahead as we face the anniversary of Lewi’s passing, we celebrate the brilliant young Man he was, we are saddened by his illness another underfunded brain disease, but mostly we grieve what he would have been