About Sarcoma and my Hemipelvectomy

In October of 2014, I was cycling out in the Peak District between Cromford and Parsley Hay on the High Peak Trail. It was a cold, wet and windy day, perfect for testing out my new winter cycling gear. After around 12 miles cycling, I was approaching Parsley Hay and was passing through an old cutting, as I transitioned from the relative shelter of the cutting to the open trail a strong gust of wind picked me up and threw me down onto the floor a good 6 feet away from where I started. I picked myself up, got back on the bike and carried on to Parsley Hay, had a bite to eat and then made the return journey to Cromford. I thought nothing of the fall.

Within a week, I was in A&E with siginifcant pain in my left hip. As I'd landed on my right side when I fell of the bike the week before, the doctors thought I'd simply stretched or strained some ligaments in the fall and the pain I was feeling was related to that. Because there was no other obvious reason for the pain, I carried on as normal and for the most part, I was pain free. By December 2014, the pain hadn't completely disappeared and I started to show signs of extreme fatigue. I was falling asleep in the day and I was also in pain at night. In the following weeks, my GP ordered an Ultra-sound, X-rays and finally, in early March, a CT scan. Whilst the X-ray and CT scan were only weeks apart and the X-ray was completely clear, the CT scan was done in early March 2015 and showed that I had an extremely large tumour in my pelvis.

From that point on, the NHS went into overdrive for me and I was whisked down to the RNOH at Stanmore where I had a biopsy (and got my first tattoo to mark where the biopsy had been) which revealed I had a Mesenchymal Chondrosarcoma. By early April 2015, I had my diagnosis and by late April, I had started my chemotherapy treatment which consisted of three drip bags containing Cisplatin, Doxorubicin and Saline.

The chemotherapy was administered at the Leicester Royal Infirmary through a Hickman line on a three week cycle and my final treatment was on the August Bank Holiday weekend in 2015. I then had seven weeks to recuperate from the chemotherapy before I had surgery at the RNOH in Stanmore.

On the 19th of October 2015, I underwent a full internal hemipelvectomy where the left half of my pelvis was removed to remove the Sarcoma in full. I then spent six weeks at Stanmore recovering from my surgery.

After one month, I had an X-ray to see how my surgery had settled and it looked like this...

After surgery, I spent many weeks with occupational and physio-therapists helping me to get back on my feet again. It was a long haul but I progressed from a pulpit walking frame to a standard walking frame, then onto crutches and finally after two years, only walking sticks.

As with any Cancer, my follow up treatment is quite regular and I have X-rays taken every few months to monitor my progress. After two and a half years, my hip had migrated just over 5cm from its initial position.

Since the X-ray above was taken, my hip seems to have finally settled at around 8cm from its original starting position, although it's only moved about 1.5cm further up, it's also moved about 1.5cm further inwards towards my sacrum thereby giving a 3cm difference to my shoe raises.

As you can see from the X-rays, there is no large prosthetic to stabilise the hip. Instead, my leg is attached using some strapping, screws and scar tissue. It works surprisingly well.

This is what I can do with it! 

Update 2020

Life is good, I continue to be Cancer free at 5 years and I'm still pedalling away on my bike. I've not lost a jot of weight unfortunately.

Update March 2022

In November 2021, I received the news that the Cancer had returned and it was already terminal. Since then I've had emergency surgery and palliative radiotherapy to reduce symptoms and maintain quality of life for as long as possible.