Alan’s leukaemia story

It started with a persistent sore throat. I thought it would be OK by the time I would be going skiing in 10 days, but it was no better. On my return, I went to see my GP on a Monday morning.

My GP insisted it was “a very mild infection.” I explained I was going back-packing to Northern Ireland the following week, to get my peace dividend. I asked if I could have some antibiotics as I didn’t want to be ill on my travels. She replied, “I’ll give you a prescription, but hold off a few days, it’ll be gone by then.”  I said, “That’s what I thought four weeks ago.” She responded that, as I was 61, she’d send me for a blood test.

I had a full week’s work planned, so the next day I gave a blood sample at Dulwich Hospital in the morning and went off to work. However, my doctor had been right; the sore throat was getting so much better.

On the Friday evening I opened the front door and answered the ringing phone in the hallway.
It was someone from Kings College Hospital, saying they had arranged an appointment for 09:30 on Monday morning for tests. I explained I would be in Belfast by then, and could it wait a week or two.
The person put me through to a Professor Mufti, and I explained again why I was not going to be there. After some talk, he said, “I think you have bone marrow cancer, and want to take some marrow to check.” I said, “I think you’re wrong, but I’ll be there.”

On the Monday morning I gave some bone marrow and motor-biked home, thinking no more of it. The hospital asked me to bring someone with me for a Wednesday appointment at 09:15. My girlfriend Shelley took a morning off work as we sat in the waiting room for three hours. I was very angry.

Eventually, Professor Mufti saw us. He explained it was very important that he see me, and if any patient had not turned up for their appointment, he would have fitted me in. This was because I had a blood cancer called chronic myeloid leukaemia (CML). He explained it was a good cancer to get, as there had been real breakthroughs in the treatment of CML and I could start my treatment at the weekend. But I had switched off after the cancer diagnosis was mentioned. My mind was racing in another direction, sorting out my affairs. He was explaining with hand sketches how the drug I was going to take, works.

What happened next was brilliant. The Prof jumped up and led me back to the waiting room. There, he introduced me to a fellow patient. Professor Mufti had asked one of his CML patients to stay after her appointment. He took us – Shelley, myself and my new friend Penny – through some corridors to an empty room. Penny told me she had been diagnosed eight years ago! She was there explaining the side effects. I was not listening. She was still alive – I loved this lady.

Fortunately, my Shelley was listening. Shelley was then a computer analyst/programmer, very much into detail and very supportive. Meeting Penny, however, had calmed me down. I thought it would be so good if when everybody was diagnosed there was a Penny to talk to; someone who was not a clinician, someone who could explain how it feels, someone who had been there, done that, a survivor who could give tips on what to expect, and was living proof that some treatments work. I joined the new support group for my cancer at Kings College Hospital and set about trying to get the idea in motion. There were lots of obstacles. CRB checks, costs, back-up and money needed.

Since then, I’ve volunteered for everything and anything. Today I am on the cover of a Macmillan booklet explaining my cancer; I work for the Biomedical Research Centre at Guys and St Thomas, giving seven workshops a year to researchers on how to involve patients in their research. I am also a founding member of the South-East London Consumer Research Panel for Cancer (SELCRP). I’m also a founding member of KERRI: Kings Electronic Records Research Initiative, representing the patient on a panel deciding who should be allowed to use Kings College Hospital patient records for research. Who’d have thought, getting cancer would be a career move?

My experience of diagnosis was very positive in the end, and I left the hospital happy. My situation now is my cancer has shrunk from 100% to 0.032%.   My advice to others would be that if you have a cold that lasts a long time, or things just won’t heal up, see your GP. And for newly diagnosed patients, I want them to know there are treatments out there that have and are still having great results. There is wonderful new research out there that can help them.

Alan’s story is a wonderful example of how having someone to support you in a such a difficult situation is of immense value. Here at OPAAL, we recognise and praise the informal advocacy provided by his lovely girlfriend Shelley, and by Penny. Alan was very fortunate to have this support on hand just when he needed it the most – but that is not always the position for all of us.

If you need someone to listen, take notes, ask questions and be there for you and with you, advocacy can help. Click on Advocacy Services near you to find it.

Thank you to Leukaemia Care for their generous sharing of this story.