I had begun suffering with chronic bone and nerve pain. I also noticed swelling in my right thigh, all down the leg, ankle, and into my foot. On top of all this I experienced extreme levels of tiredness for almost the whole of the 18 months - 2 years before I was diagnosed. I always felt no matter how much sleep I had, I never felt not tired.
I went to my GP quite early after experiencing a few symptoms. I first noticed symptoms around June/July and went to the GP in August, 2015 before finally getting diagnosed with Ewing sarcoma in 2017. Sadly I was misdiagnosed for around 2 years.
I had 2 years worth of tests/scans referrals but didn’t get diagnosed until I had to pay for a private scan. The tests were at Huddersfield Royal Infirmary.
I underwent chemotherapy as well as a radiotherapy 2012 clinical trial. I had 9 rounds of chemotherapy.
I was in hospital 5-7 days a week, then a week at home then the next week again back in hospital 3-4 days, after 9 rounds they started me on a 30-session radiation treatment. I was still doing the chemotherapy while having the radiation. All together there was 14 rounds of which I finished in October 2017.
The chemotherapy made me feel sick and tired. I always slept most of the first 2 days while having it. After a few days I used to perk up a little and was able to watch tv or have some “fun” with visitors. I was always lethargic and nauseous. I would definitely do it all again though to save my life.
I finished my treatment in October 2017.
Unfortunately, I have incurable Ewing sarcoma as it metastasised to the lungs and breast bone. The tumour was really big at 18” x 10” cm at diagnosis.
My biggest positive is that my cancer is stable since treatment finished. And that in a strange way the cancer has helped me. I've lost a lot of weight and am now as healthy as can be. I want to be healthy to curb the chance of a relapse. I've lost 14 stone. And now weigh a healthy 9 stone 8lb!
My cancer changed my life, it caused foot drop and mobility issues. So, I had to learn to cope without walking.
My strength are my kids and husband along with the willingness to live. And to beat it.
My message to others is,
Fight like hell. With everything you have.
Since I was misdiagnosed for around 18 months. I know the importance of raising vital awareness. By the time they found my cancer, it was a huge tumour and had spread.
Early diagnosis is a matter of life or death for some. It is a rare cancer especially in someone my age (41, 38 at diagnosis) it is usually a “teenage” cancer.