After Thursday bad news, my sister had the bit between her teeth yesterday in chasing down “The Matrix” clinical trials.
One of the things I’ve learned about this condition is that however hopeless the end result might be people want to help. And being too proud to accept support doesn’t define my independence, it excludes those who care and went to help if they can.
Mark giving me free parking and transport to Manchester airport. Anybody I’ve shared lunch with in the last year or so. The Plymouth train strike recovery team who first got me to the ground and then got me home when the trains didn’t. The matchday resident’s parking pass at Boundary Park. My landlord for attending a diagnosis appointment in the early days and organising moving my stuff to my new downstairs bedroom. My ex-wife and step daughter for transporting me over to Oldham to see Chris at a time when I couldn’t drive due to being a brain cancer risk. My step son for getting me to the hospital appointment for the biopsy that got me onto the wonder drugs that kept me alive last year. And anyone else who has helped!
My sister has attended most of my hospital appointments. Taken notes each time. And remembered some of the questions I forgot to ask for myself. She’s also manged to get herself appointed as a lay person on a British Lung Foundation committee that makes key medical research funding decisions. Access to top doctors who may be of influence. Access to information about medical trials.
In October Oncobabe referred me for assessment to a medical trial called Matrix. I’ve heard nothing from them, something I mentioned to Oncobabe when we met at the end of the same month. On Thursday, for obvious reasons, the question was asked about what happens next regarding this.
First response “you’ve not exhausted chemotherapy yet so you don’t qualify”.
Second response “here’s a number for you to chase up Dr Jain in Leeds”.
A little shocked at chasing up my own referral. Especially after receiving news that knocked me flat. Yesterday I wanted to crawl into a cave and do very little. So my sister started researching, reading and telephoning. I’m not sure I’d have even bothered had I had to do it myself.
A 2.45am message from Helen. “These trials require you to have seen off one treatment before you can be accepted”. I’ve seen off two. Helen thinks I qualify.
She spends much of her day reading further before picking up the phone. No reply. Chases up more numbers. Contacts my MacMillan nurse who I’ve not seen in months. Things slowly start to happen.
It seems that while my referral form is on the computer, it was never faxed to Matrix. Or if it was faxed, it’s receipt was never actioned. Irritating to say the least.
I then get a phone call from my nurse. “The trials have a ten week lead in time that cannot be skipped. The clock will effectively start when I fax this form”. Granted, the statistical accuracy of what these trials report is going to be essential and that will include a range of pre-tests and biopsy results. But I should have been in the system at the start of October and I’m not.
This creates a choice. Ten weeks with no treatment, running the risk of the cancer spreading still further and maybe even killing me. Or exhaust chemotherapy but start the clock on Matrix access now? Hobson’s choice. Chemotherapy it is. But had that fax been actioned properly I’d now be undergoing tests to get me on the Matrix medical trials.
I feel let down. The lack of follow up on my behalf has forced me to go down a treatment route I’m uncomfortable with. And that my kids are a little uncomfortable with too having seen the impact chemotherapy had on a close family friend five years ago.
Thats not to say that clinical trials are a land of milk and honey that guarantee me years of pain free life and unlimited access to a series of Oldham Athletic promotions in coming seasons.
I might not be accepted after various medical tests. Although I’ve had two treatable genetic mutations, so it’s not unreasonable to think they might be able to treat a third. I might be given a placebo. Side effects maybe horrendous. Any drug combination might fail quickly. Or, the long shot, I might benefit from a new treatment for a period of time and be a part of some wonderful cancer breakthrough.
Perhaps the chemotherapy attack on my cancer cells followed up with whatever the medical trials throw into me will work better. But at a time when I’ve taken a psychological kick, I feel particularly let down by a system over something that is meant to provide hope.
And I spent last year riding that bubble of hope.