It’s been five years since I left hospital in a wheelchair after cancer surgery (Image: Steffan Rhys)
January 23, 2020 was a monumental day for me. It marked both my 40th birthday and the day I was cured of cancer.
A few months prior, I had become increasingly concerned about a lump on my right thigh, just above the knee. It’s plausible that it had been there for years unnoticed. For a long time, the thought of it being something serious didn’t even cross my mind. It wasn’t painful or obstructive and I’d never heard of anyone developing cancer in their leg.
So, I brushed it off as a peculiar muscle knot or something along those lines. I can’t pinpoint exactly what triggered my growing concern around it, but by around halfway through 2019 I was constantly touching and rubbing it, initially with a detached curiosity that gradually turned into worry and eventually dread. My internet searches kept leading me back to one term: sarcoma. This is a malignant tumour that develops in bone or soft tissue anywhere in the body. It accounts for just 1% of cancer diagnoses in the UK.
On the left, me shortly after surgery and, on the right, leaving hospital in a wheelchair (Image: Steffan Rhys)
With around 100 different sub-types (mine was called low grade fibromyxoid sarcoma), individuals diagnosed with sarcoma often face vastly different situations. These tumours can develop anywhere from your head to your feet. They vary in terms of aggressiveness and size at the time of discovery.
Since they’re painless, they’re often discovered accidentally. Mine was roughly the size of a golf ball (most are the size of a baked beans tin when discovered).
I finally decided to call my GP surgery for some advice. I almost didn’t make that call and I recall awkwardly answering the receptionist’s questions like “Is it serious?” with a mumbled response like “Well, I don’t think it’s supposed to be there but I’m not sure how serious it is.”
I shudder to think where I’d be now if I hadn’t made that call, which turned out to be the beginning of a journey that led to a cancer diagnosis and a significant portion of my leg being removed, leaving it looking like I’ve been bitten by a small shark.
Five years have passed since that operation and I certainly feel like one of the fortunate ones. Those few hours in hospital cured me. There was no radiotherapy, no chemotherapy and no metastasis. For many people, it is much, much harder.
On the left, my leg post surgery, with part of the thigh cut away. On the right, a few days into recovery (Image: Steffan Rhys)
Part of my motivation for writing this article five years on is to show people that a cancer diagnosis can result in a positive outcome, with full recovery and a mostly normal life. As of now, I can consider myself as one of the individuals in the “five-year survival” statistics and have no reason to believe I won’t also be in the 10-year survival numbers.
Of course, I wasn’t this calm at the time. A cancer diagnosis is a profound experience and I’ll never forget the fear and tears as I contemplated my little girl and my soon-to-be-born son growing up without their father.
The days between diagnosis and surgery were a daze, as I tried to maintain normality at home and work while keeping my emotions in check.
Once the incredible people in our NHS suspected what they were dealing with, they sprang into action. There were ultrasounds, CT and MRI scans and biopsies before I received the confirmation I dreaded but largely expected.
But as well as diagnosing the leg tumour, they also needed to examine my lungs to ensure the cancer hadn’t spread there, which was the scariest part of the process – it felt like there was a serious difference between dealing with a leg tumour that could be surgically removed and dealing with secondary cancer in my lungs.
However, all the scans were clear on that front and have remained so in the regular check-ups over the past five years. I no longer feel anxious about these tests. In fact, I’m grateful that I’m checked so frequently.
It’s not to say that it wasn’t challenging at times. The agonising wait for a definitive diagnosis was tough. Post-surgery, I had to regain strength in my leg, which for a few weeks, I couldn’t move no matter how hard I tried. But that was nothing compared to the previous weeks and I was back to cycling and running within three months, much quicker than anticipated.
It took a bit longer not to immediately fear that any (entirely normal) illness or change in my body was cancer again (though I think lots of us do this whether we’ve had it or not!)
A few weeks post-surgery, I wrote about my experience. Over the years, I’ve received numerous messages from people worldwide who read it and looked me up seeking advice and reassurance. Some were terrified, and I was glad to offer living proof that their situation might not be as dire as they feared.
My leg not long after surgery, showing a large scar running down the right thigh (Image: Steffan Rhys)
Five years on, I hope more people read this update on my journey, and if it helps even one person, I’ll be content.
I also hope that anyone reading gets the message that if you are worried about a lump anywhere on your body, you need to see a doctor. More often than not, it’s nothing to worry about in my case, this time it was a different story. I know from talking to others that I’m not alone in initially thinking my sarcoma was just a weird muscle or a knot in my leg. But if it is cancer, the simple truth is the sooner you get treated, the better your chances of recovery.
As a result of going through this, I know what it’s like to have friends, colleagues and loved ones who took the time to come and see me, bring me food, keep me company, check if I’m OK and babysit. And that there are complete strangers who will take the time to offer support and advice when you most need it — some of them are often facing far more difficult, life-threatening circumstances and their courage far outweighs my own. Sarcoma is sometimes called “the loneliest cancer” because of its rarity and low profile and because even people with the same condition will be facing different operations, complications and recovery plans. The Facebook group for sarcoma patients in the UK had just 1,100 members when I joined; the group for my specific sub-type had just 20. But thanks to them I found it far from lonely.
And I got to experience for real the skill, expertise, dedication, care and patience that runs through the people on the frontline of the NHS and at charities like Sarcoma UK and Macmillan. At every step of the way, it has been not only hugely impressive but truly humbling. It’s blown me away. It is only thanks to them that I’m cured. I may even be a better person at the end of it.
For more information about sarcoma, to donate or to access their support line, visit the Sarcoma UK website.
