Rare Form of Blood Cancer – Nina’s Story

I couldn’t have got through this without Wessex Cancer Trust by my side.

In October 2017 I was told I had just months to live. I had been diagnosed with myelodysplastic syndromes, or MDS. It’s a rare type of blood cancer – only about 2,500 people are diagnosed with it in the UK each year and it’s where you don’t have enough healthy blood cells. As the condition develops, your bone marrow gets gradually taken over by immature blood cells which don’t work properly.

Three of my closest friends in my home town had been taken by cancer and I’d moved to Bournemouth to getaway. Now it had found me.

Terminal

Alarm bells started ringing when I grew more and more tired. I began to bruise and bleed very easily and started finding purple splodges on my legs.  I visited my Doctor who carried out blood tests and sent me straight to Bournemouth Hospital. Nobody knew what it was and it took three months to get the diagnosis, at which point I told it was terminal.

Limited Treatment

There was no cure and the only treatment available was repeated transfusions.

I felt shocked, confused and overwhelmed with fear. Because of the rarity of the disease, I felt incredibly alone. I found a support group that met three times a year, but they would just sit around in a circle and discuss the condition, often in a very clinical way. I didn’t need that. I was spending so much time at the hospital and seeing so many different doctors that I really didn’t want to spend another minute thinking medically.

Anxiety

I was diagnosed with anxiety and prescribed antidepressants, but it was hardly surprising given what I was going through.  I knew I might have to wait months for a counselling appointment on the NHS, or pay a fortune to access it privately, and with my family living miles away I felt frustrated and alone.

When I was at the Hospital one day I picked up a leaflet about Wessex Cancer Trust’s Bournemouth Support Centre. As soon as I stepped into the Centre I knew that it would give me all the support I had been missing. I just felt that I could offload and share my darkest feelings – things I couldn’t say to family members or friends for fear of upsetting or worrying them, with someone who would listen without judgement.

And then, miraculously, at one of my regular appointments, I was told I was getting better. Nobody knows how or why, but here I am, alive to tell this story. It’s a total mystery.

Essential Service

Coming face-to-face with death has, of course, changed me. It’s been an incredibly difficult experience and I couldn’t have got through it without the support of Wessex Cancer Trust. The work they do is incredible. I’d go as far as to say that it’s an essential service. Naturally, it still hangs over me. I’ve been told that it may come back, but try not to worry. I still go for regular blood tests,   But, I’ve made a decision to stay positive, ask for help and keep relying on the Centre for support.

There’s nothing quite like Wessex Cancer Trust and I’m incredibly grateful and relieved they’re still beside me on my journey.