This blog is going to be a little different as I’m going to update it over the next 36 hours. I’m not going to be sat in the Vale Inn and complete it during one visit as is my usual way, but I’m going to update as I go along. The reason being that tomorrow is results day from my last MRI scan.
For those of you who are parents of patients especially of youngsters or patients yourself this is, to quote Alex Ferguson, a ‘squeaky bum time’. Now, as I’ve basically been given a terminal diagnosis, what’s the issue? Well, even knowing that in reality your cancer will probably kill you we are still as prone to accidents as anyone such as flying off my bike on the middlewood way to avoid on coming pedestrians, being informed of progress can take you to another level. The other reason is that people often say to me, ‘you seem to take it in your stride’ The reality is, I’m as scared as the next person
Firstly I’ll have decisions to make, what further treatment is available, what options are left, I hope I can react like my friend Laura Nuttall, take what you can and go for those additional life experiences. But until I get the news I just won’t know.
So it’s 8.29 on Tuesday 17th and my appointment is 9.50 tomorrow at The Christie, where I’ve been invited for a to face to face. What I try and do on days like this is take as long as I can over things. I’ve tried the 3 bottle of wine course of action. That in my case was not sensible, leaves to tears upset, not just mine, but the whole family
So I’ve decided to go the slow route the last two times even to the point of using the slowest way to make coffee with my trusty aero press and a trip up brickworks to my local roasters kickback adds a welcome distraction.
Then thank goodness for the world wide cricket leagues so back to bed on a cold morning with a bit of big bash action
So after 10, I decided that even I should get out of bed and slowly do the weeks drugs. This has fallen nicely as it’s a good 15 min job these days. So have moved cricket to kitchen and refreshed the coffee. As well as my cancer stuff, there is my kidney stuff that I almost forget about. I should be ill with CKD4 but weirdly never have been, it’s been a bit of mystery to the kidney specialists for about 10 years now. The only time it’s been an issue is when they planned my chemotherapy. Thankfully my renal consultant put them right on that. Just a reminder that as cancer patients we can get other medical stuff and have other stuff before hand. Still, Cancer then tends to dominate conversation. 10.15 this time tomorrow i will know a bit more
So 11.46, cricket finished, everything is on slow today, even the dhal on the simmer.
So half way for a walk it’s been a Gram Parsons kind of day. My sister rang me to distract me, then realised by doing so she had focused me back on it. She, like my Brother and Dad superb support, they will have eyes in the family what’s app tomorrow
So the next distraction is the dog Olive. When we got Olive as the family pet I had no idea how much she’d become a constant companion when Jen is at work and children are doing their thing. Now don’t get me wrong I’m not her Dad and I’m not canine, but she at least moves her ears when I talk
So back home to Jen, just to keep moving today was important to fill the mind
So here we are about 4 hours later I’m sitting in bed watching the football, it’s cold outside. Liverpool are at least winning against the team that should be my team.,,Wolves. Mum was a St John ambulance volunteer there in the 60’s .But whatever is going on distracts momentarily but doesn’t stop me thinking.
Jen knows the score, I’ll be in the spare room tonight as I will be restless. Watching various forms of sport around the world, if I was in our room, she’d be brilliant as ever saying don’t worry, but selfishly, I might need her fully recharged tomorrow. So I eat pie in bed / total bag of nerves.
So at least Liverpool won, know you’re free styling through the night. I know you’re going to be listening to in our time about Stoicism at 3 am, but free styling on you tube I come across this https://youtu.be/sofkM8zixH8
So now time for bed. 12 hours from now, nothing changes. I’ll know more or less. But that doesn’t stop the fact that I have a difficult to treat cancer despite brain cancer tumours being the biggest cancer killer of the under 40s in the uk and in need of major research and research, interestingly I don’t blame them, ok I do a little. But these pharma companies are also part of all our pension pots. Old blokes like me are one thing but more importantly children are dying, because maintaining trident remains more important than saving young lives. Laugh I nearly paid my license fee.
Now watching the best of Brian Blessed on HIGNFY
So wake at 5.25am that’s pretty good for me full stop it’s not unusual for me to be waiting for the shipping forecast, but today I’m in the middle of it. Around the blinds there is a luminous glow. A quick behind conforms my fears. It has snowed. Don’t panic, we’ve plenty of time and Jen has parked down hill. We live on a steep bank
We got here, now 30mins to go and sat in the cafe in the hospital, but eldest child did make it out of his student house on his way to UoM to meet for a coffee and a bit of breakfast which was cheery for me and I’d no idea you could spend so much in a small cafe on food.
The the stomach churns. Update after meeting
So the idea of this was to talk you through how horrible it is to wait and hoping everything will be fine. But for the first time there was a nervous look in the eyes of a consultant I’d never met before.
Now they have a chat about what you’re up to, energy levels etc. then surely good news no progress . But this time actually there is something there we aren’t sure about. But we are going to get everyone at Salford to have a look next Tuesday at the Multi disciplinary team meeting apparently there are the neuro surgeons who specialise specifically in Glioblastomas.
This is when you pretend, obviously I’d been expecting this. I mean 20 months ago I was told I possibly had 18 months max. But I went into this feeling well enough. I’m still as coherent as I get. I’ve still been out on the bike, walking the dog doing the twitter stuff. This is what the consultant now concentrates on. “Liam the scan is half the story the way you present today gives me confidence”
Well to this very nice young man…right now, the scan is the full story to Jen and I. What are the possibilities, well I may have had a minor stroke. It’s a weird world when that’s the best option. It could be the return of the Glioblastoma brain tumour. That’s the worrying case. But It’s unusual for it not to come back to the same place, and if that’s the case then I still have treatment options
So when I started this scanxiety blog the last words I hoped to type were, no progress… all stable
So in this case, not the case, we sit down and wait a another week. I’m going to carry on as normal as I’ve just found out I have a new job, I’ve a dog to walk and the company of Jen, family and friends to enjoy.
I am really lucky I’ve a close family not just Mine and Jens, the children, I’m still close to Dad, Dom my brother and Alexandra my sister. I also yesterday received brilliant support from my friends and from the little virtual social world I inhabit. Thank you
I’ll keep you updated as and when I can . Please think about this whilst only 51 I’m also old to be surviving this disease at 51. Across the nation yesterday parents will have been given this diagnosis for their baby, their child? It remains the biggest cancer killer of the under 40s in the uk. That’s why I may well continue to badger you for resources for further research after all
Thanks for keeping reading when I started this little project, maybe not what I expected to be writing, but I do have a terminal cancer. Thanks and as always love to all , but mostly to Jen my rock who has to re-live this day by editing this for you so it’s a bit more comprehensible.