Surprisingly, I’m still alive

Dear friends,

My oncologists are very happy with me at the moment. When I was diagnosed with multiple myeloma in mid-2007, I was given a prognosis of three-to-four years survival. My prospects were particularly miserable because the type of myeloma I have is associated with rapid deterioration. Yet here I am, more than six years later, a bit hobbled, but still able to live and enjoy life.

It seems I’m the beneficiary of an amazingly accelerated improvement in myeloma treatment. Hence the oncologists’ delight.

To get to this point, I’ve undergone two stem cell transplants, repeated blasts of radiotherapy, and I’ve lost count of how many courses of chemotherapy, plus the bio-medical therapies of more recent vintage (taken orally): thalidomide, velcade, and now revlimid.

All of these have taken their toll. None of them has cured the myeloma. It’s always there, festering away (I can feel the tumours in my back and chest). At any point it could and one day will overwhelm me, but no one knows when that will be. I’m now off the prognostic charts, in a phase that the myeloma sufferers who preceded me never reached. It’s a strange feeling. Going where no one has gone before but at the same time headed quite surely for the place where everyone goes in the end, and probably sooner rather than alter.

All I really know is that for the time being I’m still here. But to be honest what’s most important to me about this unexpected experience of survival is that I still feel I have many things to do in this life: people to love, causes to fight, books and articles to write, maybe even places to visit. One thing I learned from this whole ordeal is not to take that continuing engagement with life (with all its unanswered questions) for granted. There were certainly times in the last six years when I felt being alive no longer offered that. It was survival and nothing but. I know it’s hard to imagine if you haven’t been in this position, but there are times and circumstances when mere survival loses all appeal.

Of course I’m grateful beyond words to the many people who got me to this point. The doctors, nurses, technicians, receptionists, cleaners and porters who’ve cared for me at Barts and the Royal London. All those past and present who built and sustained the NHS. My partner in sickness and health, Liz, who’s accompanied me through every phase of this labyrinthine journey (and made sure I was taking the right pills on the right day, not an easy task). My sister Susan, who donated the stem cells for my transplant. All the scientists – going back generations – whose research contributed to the myriad therapies I’ve benefitted from.

But not to Celgene, the US-based corporation that owns the license on revlimid and uses its monopoly to charge the NHS extortionate rates for its product. The cost of actually producing the drug is next to nothing, but this year my revlimid treatment alone will cost the NHS more than £40,000. Like other drug companies, Celgene claims its high prices are necessary to pay for research and development but frankly that’s crap. It spends more on marketing and lobbying than on R and D. Plus it boasts an extraordinary 26% profit margin, way above the already exorbitant pharma industry average of 17%. Who knew multiple myeloma cold be such a money-spinner?

One of the reasons I’m glad to be alive is that I can have a go at these bastards.

In solidarity,
Mike