When were you diagnosed and what with?
I was diagnosed with mesenchymal chondrosarcoma in December 2016. It is a very rare form of cancer with only three diagnoses a year in the UK. My tumour was in T10, one of the bones in my thoracic spine - about level with my bra strap (to put it in to plain English!).
How did you find out you had cancer?
I had pain in my left leg, for about 6 months. I requested a scan to confirm sciatica –my GP had been giving me painkillers but they weren’t really helping. The scan showed an anomaly in my spine. I had further full body scans, blood tests and a biopsy – all within 2 weeks of the results of the first scan, which was very fast, and made my head spin! I met with an orthopaedic surgeon who told me the diagnosis and referred me to the oncology team. On meeting the oncology team the diagnosis was explained more fully and a treatment plan was discussed.
What did you think and feel when you were diagnosed?
I was very shocked when I was diagnosed. I was told for 6 months I had sciatica and it turned out to be a form of sarcoma. I felt numb for a few days. I tried to work out what it meant for my life to be diagnosed with cancer at 31, in the middle of a degree at university, how I was going to tell people. It was recommended that I start chemotherapy within days as I had a rare and aggressive tumour.
How did the people around you react?
People around me were understandably upset and concerned. Most were supportive.
What treatment did you have?
I have had 6 rounds of doxorubicin and ifosfamide chemotherapy since diagnosis. The plan is for surgery next, where the bone in my spine containing the tumour will be removed and reconstructed with carbon fibre rods. Recovery from the surgery and return to my normal works and physical activity will take between 6 and 12 months with physio. Six weeks after surgery I will have either traditional radiotherapy or proton beam therapy in America. This still has to be decided.
How have you felt through treatment?
I felt pretty ropey through each cycle of chemotherapy that lasted three days and was repeated every 21 days. My chemotherapy was very aggressive and I was admitted to the hospital for infections when my white cells were reduced due to treatment. In those instances I felt very unwell. Between cycles I had between 5 and 10 days where I felt “normal” and was able to do normal things, although I felt very tired most of the time. The tiredness was cumulative and with each round of chemotherapy I felt more tired.
What happened after treatment finished?
I’m still undergoing treatment. I’m hoping that I can return to my studies and work after treatment.
How did you get involved with Shine?
A friend recommended Shine to me as a place to find support and to find people going through similar experiences.
What difference has Shine made to you?
I mainly use the Shine online support and Facebook group. It has been a source of inspiration, support and on occasions a place to rant. Many of my challenges and frustrations are faced by others in the group and many things can be discussed openly, like food choices when feeling nauseated and what people have found helpful regarding hair loss, for example.
How do you feel now about your experiences? What‘s been the biggest change you’ve faced?
I’m still adjusting. I’ve implemented lots of life changes, some big and some small, since I was diagnosed. I’ve changed my diet which is challenging when going out to restaurants etc. I’m taking better care of myself and living a slower, calmer life. I can’t recommend that highly enough. I was a frantic, running-everywhere-70-working-hours-a-week kind of girl before I was diagnosed. Now everything is much calmer and I pace myself much more. It’s the biggest change and the best.
If you could give one piece of advice to yourself before your diagnosis what would it be?
Live calmly, live on purpose and don’t worry about others think of you. Just do what is best for you.