This is an exciting day for those experiencing Waldenström’s macroglobulinaemia (“WM”) in the UK: the launch of a new website dedicated not only to their interests, but also to resourcing medical professionals in this quirky, rare disease. You can find the website here
What is more, the organisers have very kindly provided a link to this blog from the site, so it may be that some of you reading this are new here: if so, a very warm welcome to you.
I thought this might therefore be a suitable opportunity to say a bit about the blog, what it is and what it is not, and to give a brief synopsis of my journey with WM so far.
This was me on 7 September 2010…
This is me now…
Exaggerations and over-simplifications both, to be sure, but nevertheless close to the truth. Yes, as my doctor told me just over a year ago, I have cancer. She went on to say that there was treatment available and, with that, hope. Surely many of us create playlets in our minds, anticipating how we will react in certain situations and it is inevitable that “My Cancer Diagnosis” is going to be a particularly popular production. The reality for me however was that the diagnosis marked the beginning of a new chapter; it was not the closing sentence of the book of my life. It became apparent early on that there was a story unfolding and so this blog was born. In it I have sought to give essential medical detail, including details of treatments and procedures and occasional (gasp) pictures of body parts, my guiding principle being that knowledge is power. I have seen more needles, of varying sizes, in the last year than I ever thought possible and I don’t think you ever really get used to them, but the more we shine the light the less darkness there is.
It became quite apparent however that, although Dr W had just made a shock entrance and moved centre-stage in my life, he was not destined to stay there all the time and moreover that the cast of the production was large and growing. So the blog sought to recount other episodes besides the immediate effects of disease and the ins and outs of treatment in the hope that readers would gain an insight, as I was doing day by day, into how disease relates to life and vice versa. When the side effects of chemotherapy have been at their height, the danger has been that personality will be obliterated under a mass of uncomfortable, disconcerting symptoms. I have found though that there are elements of story to be teased even out of those times. You will read them here.
I am not however terribly good with numbers, so you will only find modest references to my blood counts and other statistics. Some people take great interest in these things and I salute them, but I tend to think in pictures.
So where am I now, literally and metaphorically? I am at home, in initial recovery from major chemotherapy at University College London Hospital (“UCLH”), with whom my local hospital, St Peter’s Chertsey, has shared care. I have undergone what is referred to as “autologous stem cell transplant” (“ASCT”): in essence, stem cells were abstracted from my blood in July and stored, I was blitzed with high-dose chemo in August and then my stem cells were fed back to me, so that my vacated bone marrow could be repopulated with squeaky clean new blood cells and I would grow an immune system again instead of being left without one (a bad thing). It is a form of treatment sometimes suitable for patients under 65 (you need to be reasonably hale and hearty to withstand the chemo). It was advisable in my case as my disease was pretty well advanced when I was diagnosed, this being a sneaky, slow-growing condition and it having developed in my bone marrow and lymph nodes over about five years. The goal of treatment is at least five years of remission without the need for further strong medications. In the meantime, new treatments are being developed and there is increasing national and international cooperation in combating the disease.
Recovery from this latest treatment is slow: at least three months before the slightest exertion will not leave me breathless. At the moment I am not taking any drugs other than an antiviral to keep shingles at bay, my immune system being somewhat vulnerable to opportunistic viruses at present, although present and correct in many other respects. In six months I will undergo my third bone marrow biopsy and CT scan to see how the latest chemo has actually affected the disease: booted it to the far corners of the known universe, we earnestly hope!
What have been most helpful to me over the last year and a bit? Family and friends above all: existing bonds have been strengthened and developed and I have been on the receiving end of numerous messages and acts of love, kindness, encouragement and generosity. Faith, not religion: faith flew away for a bit, but came fluttering back. Music, music, music. My iPhone, purchased just in time. DVD box sets: Mad Men, The Sopranos, The West Wing… My doctors and support staff, without exception. The “WM Community” both online and in person: one of the upsides of having a rare disease is that those affected by it are strongly motivated to support one another and share knowledge and experience. Books. Writing this blog.
What have not been so helpful? Telephone sales calls. Political speeches. The preposterous plots of much British TV drama. Noise. Er, that’s it.