Living With Sarcoma

06/07/2016 12:25 | Updated 06 July 2016

I was diagnosed with chondrosarcoma - a rare type of sarcoma, which is a cancer of the bone and soft tissue- in my hip and thigh bone when I was 25 years old. I've been asked to blog about how it felt to have this type of cancer - and how it feels now, almost two years since finishing treatment.

To be honest, it's difficult to capture all my emotions during the past two-and-a-bit years of my life. I've learnt that having cancer does not necessarily mean life changes too dramatically - although perhaps I was lucky (a word I've used more since diagnosis) to have caught my sarcoma early.

I spent a lot of the time between diagnosis and treatment - six months in all while my medical team decided what to do with me - trying not to think about the situation I found myself in. It was easier to bury my head in the sand than accept the scale of the surgery I faced.

However, it was hard to ignore my sarcoma - or 'The Bastard Leg' as I christened it - due to the smothering amount of pain it dealt me. I had a constant dull ache in my hip. But when I stood up or sat down, there was a sudden shooting pain right the way through my bones. It felt like someone was taking an ice pick to my bone marrow, chipping it away in small fragments - sometimes, I'd imagine my bones were turning to this black, putrid sludge.

My nurse told me about Sarcoma UK when I was diagnosed and I found their website really helpful to learn more about my condition and treatment. Through Sarcoma UK, I came across a mailing list and Facebook group of sarcoma patients. It made me feel so much better to hear from other patients about their experiences and to share my own moans and worries.

I didn't receive chemotherapy or radiotherapy for my treatment - chondrosarcoma, which is a cancer of the cartilage, is unresponsive to both. Luckily (that word again - luck) surgeons were able to remove the large tumour in my pelvis and the smaller tumour in my femur. So although I now walk with a limp and am unable to run, I do sometimes feel like a phoney cancer patient because I never had to receive chemotherapy or radiation.

What I did receive was a "massive hemipelvic and proximal femoral replacement" - I call it a "hip replacement on steroids". Essentially I've had most of the left side of my pelvis and the top part of my femur removed and replaced with a metal implant - and yes, I do think I'm The Bionic Man.

Although I avoided radiotherapy or chemotherapy, I was woefully unprepared for the six-week, horizontal stay in hospital. I hated hospital. Not because I wasn't cared for - the staff were excellent - but because I couldn't face handing over my independence to people who got to go home to see their friends and family at the end of their 12 hour shift.

A turning point came around four weeks after my operation. My new hip had already dislocated twice and it felt like every time I was allowed to try something new, like getting out of bed or standing up, it would dislocate again. I'd be in an ungodly amount of pain and have to go through another procedure.

At this point four weeks after my first operation, I tried to stand for the first time and my hip dislocated again. This time I felt the clunk that anyone who's jointed a chicken will tell you means the drumstick is ready to carve. A deeply unsettling feeling when the 'drumstick' happens to be your own leg.

At this point, I thought I'd never get out of my bed, let alone hospital. I remember when I came back from x-ray, waiting for the confirmation that my hip had dislocated again, the Ward Sister put me out of my waiting misery by simply saying "Hard luck." I knew then that my hip had dislocated again and I melted into tears - I didn't care that the other people on the ward would see me, a young man, cry.

That was the first and only time I cried in hospital. And I remember it being the moment when my outlook at being in hospital switched from being negative to positive. I felt a sudden lift and could see again that I was going to get out of there.

Cancer isn't all doom and gloom - although there is a fair amount of that thrown in - there are highs (not all of them caused by morphine) as well as lows. And after all was finished, the net result might even be that I'm a better person for going through it. Since my treatment, I've learned to walk without a stick (mostly) and have got back onto my bike again, training to ride long distances - something which I would have never imagined doing two years earlier, as I waited for the surgeon's scalpel.

Sarcoma Awareness Week takes place from 4th - 10th July. For further information on the work of Sarcoma UK, the only charity in the UK focusing on all types of sarcoma cancer, please visit