TUESDAY was World Cancer Day and I found myself at Westminster. This isn’t my usual location on a run-of-the-mill Tuesday, but I had a good reason to be there.
On another week off the bike as my back slowly heals, I was there for Action Radiotherapy, a charity of which I am a patron. It supports Radiotherapy4life, which is a campaign to help people who would benefit from radiotherapy receive the treatment they need.
We were there to lobby MPs to get behind an increase in support which would allow people to access radiotherapy.
There are a couple of reasons why this is a special subject for me. While I did go through radiotherapy in 2019, it’s something that I never received during my eight years of care in Oxford and it wasn’t until moving my care to University College London Hospital that I got what I feel was the treatment I required for my tumour.
So it is very emotional for me to read back through my hospital notes, sat paralysed down one side of my body, and see a letter dated May 2010 after my first surgery which mentions radiotherapy. Yet the referral never happened.
They say hindsight is a wonderful thing. Knowing what I know now, and going on the research out there, I am convinced radiation has played a key part in the treatment of spinal cord tumours as far back as the 1990s.
I trusted my surgeon with my life and believed everything he said. But I now know I should have been looked after not only by a surgeon, but by an oncology department too.
Yet not once, in eight years of treatment at Oxford, did I ever visit oncology.
I think back to 2018. I was facing another surgery then, breaking down in tears, and the surgeon asked me if I needed support. To which I answered “yes I do”.
He said they had a wonderful psychologist there, but I never got to see him. I was left on my own, trying to understand what was wrong with me.
I am not a doctor but I have been studying neuroscience over the last nine years so I could actually work out what was going on with me.
No one in life prepares you for this. There isn’t a class at school where you learn how to manage yourself through tumour surgery.
For those first eight years I went from scan to surgery to scan to surgery until I was paralysed.
Yet when I spoke to all the leading hospitals in America in 2018 they all said the approach they would have taken was to debulk the tumour to prevent neural deficit, followed by radiation.
The frustration for me is knowing that my hospital knew in 2014 that my tumour was linked to a specific gene which meant re-occurrence was almost certain. But no one told me what that exactly meant.
Why am I sharing this now? Well, it’s a massive part of my life and I feel that if I could have had access to radiation in 2014, I could have not only avoided a further three surgeries but I could have avoided being paralysed altogether.
Forget missing the Olympic Games and the cycling, that was hard enough, but the real frustration is that I now have to live the rest of my life as a spinal cord injury patient.
You will know from last week how tough living with this type of injury is, but words on paper can’t really describe it.
I might appear to do these impossible challenges but that doesn’t mean I don’t go through mental hell. It’s constant work, both physically and mentally, to stay strong and keep fighting.
Not to forget the occasional check in with Dr Steve Peters who helps me see everything from a less emotional place. The 10-minute chat with him is what keeps my mind where it needs to be.
What can you learn from my story? Ask to see your medical notes so you know what’s going on with every aspect of your health, get those second and third opinions and don’t be scared to ask.
The day I sat down and read my notes I was heartbroken to see all these referrals for radiotherapy and know that I had never been told about them and no one actually ever made them. I was also led to believe that it wasn’t for me.
So even though this week wasn’t what I wanted from a training week, speaking about the benefits of radiotherapy in Westminster was very rewarding. And maybe more important than a few kilometres on my bike, as hopefully these discussions will save lives and the longer I live with this tumour I see that it’s not how many medals you win that’s really important.
What matters more is the amount of lives you affect in a positive way.
Why are you making commenting on The National only available to subscribers?
We know there are thousands of National readers who want to debate, argue and go back and forth in the comments section of our stories. We’ve got the most informed readers in Scotland, asking each other the big questions about the future of our country.
Unfortunately, though, these important debates are being spoiled by a vocal minority of trolls who aren’t really interested in the issues, try to derail the conversations, register under fake names, and post vile abuse.
So that’s why we’ve decided to make the ability to comment only available to our paying subscribers. That way, all the trolls who post abuse on our website will have to pay if they want to join the debate – and risk a permanent ban from the account that they subscribe with.
The conversation will go back to what it should be about – people who care passionately about the issues, but disagree constructively on what we should do about them. Let’s get that debate started!
Callum Baird, Editor of The National
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules here