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Wraye’s story

Wraye contracted NF whilst undergoing chemotherapy for breast cancer. Here's Wraye's story.
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Hello, my name is Wraye and I have been living and working on the European continent for almost 30 years. I now live in Bonn, Germany

I raised a family here and was always active in sport. I never had any major health issue until I was diagnosed – aged 50 -with breast cancer at the end of 2012. I was sent into surgery straight away and chemotherapy followed shortly after that. The first 3 rounds of FEC chemo went so well that I returned to work part-time. However, I suffered an unexpected toxic reaction to Doxetal chemo in March 2013, resulting in a severe skin reaction on my neck and back.

I was in treatment for this but the rest happened so fast. I developed a fever and excruciating pain in my right shoulder. This was a Friday evening so my daughter drove me to A&E where after many hours of tests an assistant doctor guessed at NF and sent me immediately into surgery. He probably saved my life.

I spent about 2 months in hospital, 3 weeks of that in intensive care, and underwent over 10 operations. I lost at least 30% of the skin and muscle on the right side of my back. The doctors tried to transplant muscle from my left side to the right but the transplant developed blot clots and partially died. This left me handicapped on both sides. After my release from hospital I needed daily nursing at home for a further 4 months. Since then I have been in physiotherapy for 2 hours a week to regain and maintain upper body mobility. NF is an utter rarity here so I have lost count of the number of doctors I have seen, half of them I suspect just wanted a look at my strange case.

I have since given my oncologist permission to use my case at a tumour conference to highlight the fact that NF can still be an issue in cancer treatment.

Since then I have been pensioned off but lead a simple life at home. The consequences of NF and constant pain are with me every day. I still grieve and fret over the heartbreak my children suffered during my illness but am also so grateful for their help and my friends during this time. Often, I could not cope without them. Bless them all and bless you my fellow sufferers.

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