On Sunday 6 November, 2011 I was admitted to A&E at the Bath Royal United Hospital with a fever, shaking uncontrollably and with a pain in my shoulders that even a double dose of ibuprofen couldn’t shift. Twenty-four hours and a bone marrow biopsy later, I found myself in the oncology unit having been diagnosed with acute lymphoblastic leukaemia.
It was the culmination of a few months of not having felt quite right. I’d been tired a lot of the time and had a persistent cough that occasionally got so bad I would throw up. I’d had a couple of bouts of what seemed to be the flu, complete with the usual shivers, aches and pains.
I’d been living and working in Frankfurt, and first saw my German GP in August, when I was prescribed a course of antibiotics for a chest infection. After this failed to improve my cough, I returned and took a blood test. I thought nothing much of this, and indeed never heard anything back about the results, so presumably they didn’t flag up anything abnormal at that point. Instead I was referred firstly to a lung specialist, who ran a lung function test which indicated my lungs were working normally, and took an X-ray which came back clear. I remember being relieved at this but at the same thinking ‘it can’t possibly be cancer’ which seems a blissfully ignorant view now! Following this I was referred to an ear, nose & throat doctor who was similarly unable to find anything amiss.
While all this was going on over September and October, things got progressively worse, and I eventually saw my GP again the week before I was due to fly back to the UK for my belated university graduation ceremony. He took another blood test and arranged to see me on the Friday morning just before I headed to the airport. The doctor called me in and told me my blood results were ‘not very well’, and while he was still unable to determine the cause of my health issues, it was clear that he suspected something serious. I was anaemic, he explained, and should avoid any strenuous activity over the weekend, but was given the green light to fly home.
As it was, the doc advised me to go straight to hospital upon my return to Frankfurt. In the end I didn’t make it that far; my body held out just long enough to graduate before finally giving in. The evening after the ceremony I was in so much pain I didn’t sleep at all, and the next day I was admitted to hospital in Bath and finally diagnosed. To be honest, I don’t know what I’d been expecting the doctor to say, but I remember the first time the word leukaemia was mentioned, for me it came absolutely out of nowhere. I knew precious little about the disease and hadn’t considered it for a second. It was a classic case of one of those things you don’t ever think will happen to you, but alongside that I simply had no idea this kind of thing happened to people my age who were otherwise in good health.
I look back on the days following my diagnosis as some of the darkest, but for much of that time I managed to remain in remarkably high spirits, which I put down to a combination of shock and large doses of morphine. The outpouring of support from my family and friends of course provided a hugely important morale boost for which I’ll always be grateful. There was also a weird sense of relief that I finally had a diagnosis after months of struggling on, not understanding what was going wrong with my body, and that I was in the right place, with the right people around me, for something to be done about it.
Although it’s unhelpful to do so, it’s impossible sometimes not to torment myself with the thought that had I - or indeed the numerous doctors I saw - been a bit more aware, I could and should have been diagnosed sooner. I’m sure this is something a lot of blood cancer patients can relate to, what with the symptoms often being slow to appear and difficult to categorise, along with the sheer unexpected nature of the diagnosis. As surprisingly common as blood cancers are, they’re still rare enough that it’s seldom the first thing that crosses the mind of the patient, or in many cases the GP, especially among traditionally low-risk age groups.
Had I been admitted a few weeks earlier it’s possible that we could have got away with a less intensive treatment with fewer harsh side effects, but I’m still very lucky in that my diagnosis came early enough for the first-line chemotherapy to be effective. Although I learnt my lesson the hard way, never again will I let myself or my loved ones put off seeking medical advice in case of the slightest health doubt! In my next blog I’ll focus on the initial stages of treatment and how I made it through. Comments and questions welcome as always.