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SARAH’s StorY

People will tell you that when you have cancer you will look ill. You feel ill. I didn’t.

 
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After 10 months of limping, complaining and persisting I finally got an answer to my nagging slightly swollen left leg worries. Just worries, nothing major, but most definitely not right.

No, it wasn’t a DVT, or pelvic issues or an ovarian cyst, or a sports injury, or a sciatic nerve anomaly. I had cancer. An MRI confirmed the existence of a tumour and a biopsy confirmed its status. My official diagnosis date was 31 May 2016.

I had a cancer that neither I nor no one I knew had ever heard of: sarcoma. Sarcoma is cancer of the soft tissues and bones. Myxoid liposarcoma is a high-grade tumour, one of around 50 types of sarcomas. My tumour was malignant and sat at a whopping 5 x 5 x 12 cm (no wonder I was limping) and was in my left calf muscle sitting on the main artery into my foot. 

Sarcomas make up 1% of adult cancers and 15% of childhood cancers. They’re even rarer in someone my age, 46 at the time. As they are so rare, they’re misdiagnosed all the time, resulting in a staggering ½ mortality rate. Sarcomas as we understand it ARE NOT lifestyle cancers.

It’s important to add at this stage of the story that I had no other obvious symptoms. People will tell you that when you have cancer you will look ill. You feel ill. You might. I didn’t. I was an active (swimming teacher) mother to two daughters. 

My care plan was written. Radiotherapy to be followed by surgery. Radiotherapy was largely painless. I had 25 sessions at the Bristol Royal Infirmary and the logistical nightmare of those sessions was the tale of that summer. My leg grew sore but nothing more than looking like and feeling like sunburn.

A well-timed holiday in Spain followed, although frustratingly I wasn’t allowed in the water in case my skin had broken from the radiotherapy, which puts you at huge risk of infection. I also had to keep my leg out of the sun, something I will always have to do. I sat poolside with a leg shield on, sweltering and receiving many a strange glance. And, of course, I grew more and more apprehensive about my upcoming surgery.

7 September 2016 was the day. I already knew that I had the best medical team. One of the few plus sides to having a rare cancer means that you get the experts. Surgeons Chapman and Wilson are just that. Although to hear on the morning of my operation that they didn’t know if they could save my leg was devastating to say the least. While the radiotherapy had been successful in killing off most of the tumour, its position posed a headache.

Plus, the artery posed a mammoth problem: it was 1mm wide and was the only thing keeping my foot alive, so much else was being removed alongside the tumour. A good part of my fibula bone was being removed too as it had been savaged with the radiotherapy.

I woke from the seven-hour op trying to wiggle my toes and work out if my leg was still attached. It was and the doctors were pretty happy with their handy work! As were we of course.

For the following five days I wasn’t allowed to get out of bed and my leg was in a hot house quilt. They had taken a good chunk of my right thigh fat and muscle to fill the vacuous gap in my left calf. The warm (boiling) conditions were to incubate the transfer of tissue encouraging it to be accepted by its new home. This meant hourly checks, bloods, temperature…but as the days went on these got further apart and everything seemed to be working brilliantly.

On day five I was helped upright on to crutches in a cast and promptly fainted, such was the shock to my body. But I was progressing and after a week I was allowed home and for a short time used a wheelchair. Life was utterly, utterly exhausting at this time.

To cut a long story short, my surgeons marvel at my recovery. I have had so much removed from my left calf that they don’t really know how I am able to do everything that I can. I have some movement and balance issues still, but by and large it seems wrong to complain given the complexity of my surgery. 

I am nearly two years cancer free. I attend Southmead every three months to have chest x-rays (to check the cancer has not come back and spread to the lungs) and an MRI on the leg to check the same every six months. I will probably attend these sessions for a total of ten years IF I stay healthy. I’ve also had some reconstructive surgery to the calf to re-shape it.

To this day, I have still not met another sarcoma survivor in the flesh.

My surgery was a team effort, for which I must acknowledge the help of my surgeons and medical team at Southmead, my NHS physios, Karen Green at Core Pilates, Natasha & Dave at Get Fit in Bath, my parents who taught me to be healthy and active from an early age, my children for never giving me star treatment, but mostly my incredible partner Simon who’s put up with a lot and challenged me consistently.

 

“To hear on the morning of my operation that they didn’t know if they could save my leg was devastating to say the least.”

 

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