Well I’m in a weird world now, I know my tumour is back and my professor keeps stressing highly aggressive, because it’s so deep in my brain it’s completely inoperable. So I’m on a new chemotherapy that I only take every 6 weeks
Now for someone whose entire life is spent trying to come up with operational solutions to problems this doesn’t feel very dynamic. In fact it feels very passive. I realise we are doing what we can and Jen and my sister asked about a long list of alternatives which were extensively ruled out by the consultant not just with why nots but examples of trials which have shown no conclusive benefit to Glioblastomas due to lack of funding into this complex cancer.
So here I am often awake between 2am and 5 am laying in bed mostly a little terrified, thinking about what I’m going to miss in life and wondering what will become of my family in this slightly dreary world of war and climate destruction
It’s weird I know I can’t do anything else but hope the chemo works and I’ll get it’s development checked out every 6 weeks with a review of my bloods, platelets, kidney function etc
What’s weird is I don’t know what I’m so worried about, I’m not sure what happens next, but I don’t know exactly why I am scared of it? Goes along with my permanent fear of not knowing. I find things easier when I just know.
So Joe and I took to the hills and a hostel where the children and I have often have visited over the years.
I then got the family together which can be like herding cats when they get to this age.
So I move from scan to scan with a sense of anxiety and powerlessness.
Jen and I have have splashed a bit extra for a trip to the lakes in half term
But I still don’t feel like I am organised enough but as my wise sister did say, just let it happen Liam.
She is obviously, as usual, correct, but I would like to meet my celebrant before I go and I have got an outline of what I’m going to have said on my phone.
So that’s my ramblings for now
One thought on “Twilight hours”
Liam, Shaun here, i follow you on Twitter. I don’t know what to put here except to say, i send you every bit of love and light i can muster. What an incredible family you have made, you must be so proud. All of us, each and every one, are waiting to find out when we go, when it ends, and i suppose we are all nearer or further and none of us know where. I, like you, worry about the future, and my family, and what happens when i am not here. But it sounds like your sis is right, letting it happen is a good thing to do. I hope so much that you get good news, that you feel better, that you get the time you need. I have nothing else really! I just wanted to let you know you’e inspring to a lot of people mate. Keep going, keep at it. All our love from our Community Garden xx