Last Saturday was a huge day in my life history calendar. Six years ago I was diagnosed with multiple Myeloma.
Each year that passes makes that day, 4 Feb 2011, more and more significant and makes me more aware how lucky I am to have survived to this point, from an “incurable but treatable” cancer. I’ve got through all the treatments, two stem cell transplants and GvHD. And I’ve witnessed a number of fellow citizens of Myelomaville die or relapse and have to return to treatment.
What’s maybe more special about this year is that when I was first diagnosed, I was told that the average life expectancy with a myeloma diagnosis is 3-5 years. I amended and broadcast that as 5-10 years because I just couldn’t bear to give out such scary news to those who love me. So, I can now reveal that I have survived beyond the average I was given, which in the intervening years has also expanded. Myeloma is still deemed to be incurable, but there are many more people getting earlier diagnoses and due to incredibly fast-paced research and drug/transplant development for this disease, many more people are living much longer.
Having said that, I’m also aware of feeling guilty and sad that I’m not feeling totally celebratory about my survival. That’s just how it is; I don’t want to be persuaded, cheered up or ‘fixed’. Just heard.
These days, I’m mostly physically well, but with some lingering fatigue, loss of concentration and memory and varying anxiety. I do miss the energy and excitement of life on steroids. Adapting to a slower, calmer, more ‘normal’ way of being seems quite a challenge.
I’ve not felt like writing in the past year or so – well, there’s not been a lot to say. So this will probably be my last post… at least as long as I remain in remission. They say that the longer I survive, the longer I’m likely to survive… so who knows, it may be the last post ever… I’m not sure how I feel about that.
I feel irrevocably changed, on both a physical and emotional level. I am not the same person I was before. That’s ok, but I feel like I’m still working out who I am, what I want to be/do with my life.
In the meantime, I volunteer:
– as a member of Myeloma UK’s PEER Network, offering my experience and support over the phone to other myeloma patients facing an allogeneic stem cell transplant;
– with Anthony Nolan on their Register & Be a Lifesaver (R&Be) education programme, going into sixth forms and colleges to inform young people about what’s involved in donating stem cells, blood and organs, and recruiting them onto the stem cell register;
– with Nottingham Nightstop, offering occasional short-term overnight accommodation to homeless young women;
– I’ve also been out to Calais to help cook and prepare food for refugees at Dunkirk, with Refugee Community Kitchen. I hope to go again.
While my energy seems to fluctuate, with fatigue affecting me more some days than others, with no obvious rhythm, I have continued with Tai Chi, which I’ve been learning since I was first diagnosed. As for other interests, I’ve been drawn to the arts: painting, making ceramics, life drawing, printing, felt-making; and dance/movement, such as Butoh, Contact Improvisation and even getting involved in a performance art project. I am considering taking an Access/Foundation course in Fine Art at a local college, hoping to bring all these creative interests together.
I’ve learned Playback Theatre, which has become a big passion, not just for myself, but for how much it can be a cause for creating connection and community in the world, which I think we desperately need at this time. So as well as attending workshops and training, I am striving to develop a Playback Theatre company locally.
I still enjoy travelling, but less extravagantly (and less frequently) than a few years ago, without the fuel of steroids and without the propulsion of imminent death hanging over me. My last major trip was driving to Paris with a friend, to see Marianne Faithfull in concert at the post-bombing renovated Le Bataclan, then north to Calais to volunteer. My next trip may be to Budapest in April, or a driving tour with another friend in Southern Spain in May… to celebrate my five-year transplant anniversary.
Finally, I want to say thank you to all of you who’ve read my posts and commented, supported, empathised, shared your own stories and cheered on from the sidelines. This post is mostly to let you know I am alive and getting on with my life “just like any other bugger”. Thanks for being there. x