Precious, Chronic Myeloid Leukaemia (CML)
How did you find out you had cancer?
I had been ill for some time and my GP had missed the signs. I thought nothing of it and went to work and fainted at Hampstead tube station. I was rushed to the hospital at about 3pm and by 7pm my sister in law (a doctor) broke the news to me
What did you think and feel when you were diagnosed?
Relief. I knew something was wrong but I could not explain it. So the initial emotion was relief that I was right. After that came fear. I was terrified. I had heard about cancer and vaguely knew cancer patients so I didn’t know what to think. The whole thing was a major shock. I was unable to cry for a year. I just went on autopilot.
How did the people around you react?
My family were brilliant. I had my brother and his wife with me when I found out and they did an amazing job of breaking the news to a select group of people. I couldn’t do it. Friends were a mixed bag. Some people jumped ship and one or two stayed. I really struggled in the early days with the rejection and unkind comments from people I cared about. Thankfully, the experience revealed the people who love me without condition.
What treatment did you have?
I was on tablet chemo for 6 months from June to December 2012 but unfortunately I relapsed and had a course of chemo in January 2013. That was tough but I survived it. The treatment wasn’t as effective as we hoped so I had more chemo, radiation and a bone marrow transplant in May 2013.
How did you feel through treatment?
Treatment was hard-core. I thought of getting myself a Wonder Woman cape after it finished but I was too tired. After my first stint with chemo, I was scared. The sad thing was that the relapse happened so quickly that I had no time to look at fertility options. I was just told two days before chemo that it would lead to menopause. I had about 3 months to prepare for my transplant and I was just terrified. I spent hours reading up on my proposed treatment and it was stressful waiting for a donor. In the end, I got on a clinical trial and my brother very kindly donated his stem cells.
Nothing prepared me for the actual treatment and the side effects and I found the isolation challenging. I kept in touch via Skype and made friends with the staff and patients. Having human contact provided some sort of distraction.
What happened after treatment finished?
I had a cocktail of 27 tablets to take and weekly blood tests and transfusions as an outpatient. I was exhausted. I had to pick up the pieces and deal with my broken body. I was lucky to have my family with me. They put up with a lot. I was glad to be alive but there was anger also. My memory was shot and I mixed words up, the menopause was horrible, I was in a lot of pain and I was in bed for most of the time. My immune system had been wiped out. I was very lucky to be referred to the Marie Curie hospice in Hampstead. They really helped me put my life back together. I started counselling and discovered that my anger was normal. Talking also helped me deal with the aftermath of the diagnoses and gradually build my confidence.
I also joined an online group for people with CML in order to find out more about the disease and went back to night school for psychology courses.
In the last 2 years I have become an aunty twice over, taken a break and learnt how to use a tagine. I am also setting up a business making skincare products for people undergoing or completed cancer treatment.
How did you get involved with Shine?
Someone posted a note on the other cancer group I joined. It was for an event for young people who had been through cancer and they were doing fun things. At that point I wanted to forget about being sick and get on with my life. I requested to join and my first event was a drinks evening at the BFI. Everyone was welcoming; I got a free drink and met genuinely nice people my age who had survived.
What difference has Shine made to you?
Shine has been a blessing. I have met some amazing people and been to some fantastic events. The best thing is the community spirit. People get you and are supportive. The “Working after Cancer” workshop they ran in Bournemouth earlier this year (they think about everything) gave me a safe environment to figure things out. I used to be scared of the future but it is getting better
How do you feel now about your experiences? What‘s been the biggest change you’ve faced?
Tough question. I have learnt a lot about myself and about people. I became a philosopher along the way. I feel fortunate to be alive. I am a stronger person for the whole thing and I hope my experiences can help other people. My dreams have changed too. I want to raise awareness of the disease and need for donors in Black and Ethnic Minority communities.
The biggest change for me was my normal being redefined. I don’t remember what normal is. Things are very different now. I had to accept that my energy levels are different and to sleep when I can.
The drop in finances was really tough too. I found it hard to adjust in the beginning but I tell myself I have saved a fortune in hair products. I am trying to start a business and I wish the government would help people in my position with training and support.
If you could give one piece of advice to yourself before your what would it be?
Before my diagnosis, I had a pretty boring life. Being ill shook my world, but I learnt so much about myself and I did some growing. In that respect, it hasn’t been all bad. Maybe I had to go through the pain to be who I am. Someone said that light shines through the cracks of our broken hearts. What would I say to myself pre-diagnosis? Well done in advance for surviving what lies ahead.