Epilogue one

Master of puppets. I’m pulling your strings. Twisting your mind and smashing your dreams
Master of puppets – Metallica

Anatomy of a chronic, life threatening, disease

Our ideas of disease fall into a few archetypes. There’s those you get, are treated for and recover. There’s those you get, deteriorate and die. There’s infectious ones, hereditary ones and lifestyle induced ones. There’s disability. Myeloma is no one of those things. In particular, no matter how well it is treated, how well I look, how upbeat I am, it will never be cured and it is always lurking there, promising to lay me low and eventually kill me. I find that hard to acknowledge and accept. Other people – who have usually spent a lot less time thinking about it than me – find it harder. So I’m still aware, if I end off talking disease to someone for the first time, that they are fishing around for cues of a happy ending, that I have some kind of endpoint to head for beyond which I will be cured. And I don’t, because I won’t.

In the first few weeks of my diagnosis I was very fortunate to find an online group of “under 50s” (I was 39), whose company provided me some reassurance and solace. I am still grateful for their friendship and companionship. They showed me that life can go on, and helped me come to terms with a disease that might well just lurk about causing me problems and threatening to kill me, for a very long time. Among that group, though, I also saw the stark reality of what myeloma is capable of. I greatly miss those friends who have died, even though I think our rate of dying is slowing up which must be a consequence of better treatment options. But Wendy, Helen, and more, I will not forget you.

Every day, some other poor soul, sat with a doctor, discovers that (s)he has myeloma. And you aren’t prepared for it because until the bus hits you, you’ve never been run over before. Witnessing someone else getting run over is not the same. Maybe one learns a bit by the experiences of those close by. In that sense maybe dialm serves to shield a few people from a little of the shock that will come to most of us when we are faced with something potentially deadly or disabling. But honestly, I doubt it. I think that shock retains its impact the day it suddenly applies to you.

But I do think it helps to have a broader understanding of disease. Our ageing society, and the effect of medicine in defeating many infectious diseases, means that many more of the reasons we will find ourselves in front of the doctor will share some attributes with myeloma. Chronic disease probably means symptoms that fluctuate in severity. It probably means treatment that changes over time. It probably means an amount of cumulative disability. That’s reality folks! My own story is not really anything much to write home about.