A video diary of my Cladribine chemotherapy for Hairy Cell Leukaemia.

I recently started a course of chemotherapy for my condition, Hairy Cell Leukaemia, and decided to keep a short video log on YouTube each day detailing how the treatment was progressing and how I was feeling. Partly to keep myself occupied and something to remain focused on, and partly in the hope that it might prove useful to anyone else unfortunate enough to find themselves in the same position.

There’s often a feeling of helplessness in situations like this, with medical events going on which are largely outside of your control. Some people make notes in a record book, to keep themselves involved in the process. I found that making a short video each day helped me considerably, by giving me a ‘job to do’ documenting the treatment that others were delivering, and making me a part of the process rather than just the patient.

The video clips are a fairly matter-of-fact record of events, but in this blog post I’ve also noted a few random thoughts and observations which didn’t get captured in the videos and are perhaps more personal or emotional.

The first clip starts the day before my treatment, as a benchmark for my mood, and outlines my understanding of what’s about to happen. Two days earlier, I had seen my consultant to discuss the treatment, sign the consent form, and raise any questions. One of my questions concerned organ donation. I’ve carried a donor card for all of my adult life, and in more recent years added myself to the electronic register. The organ donation website advises that the only automatic exclusion from donation is CJD, and all other cases are assessed individually for suitability. But after discussing in some detail with my consultant, and his well-qualified concluding comment “I wouldn’t want your organs”, I decided it would no longer be appropriate for me to donate. That evening, I removed myself from the online register, and also removed and destroyed my donor wallet card. Such a simple process, yet with such a sense of finality about it, which really struck home quite deeply and left me very upset.

The clip for Day 1 is taken at the end of the first day’s treatment, and talks about the various prophylactic medications I will be taking. Little did I know that I would shortly be having a massive allergic reaction to one of them. I can remember feeling what I thought was the onset of a sore throat, and being disappointed that it was only Day 1 and I might already be succumbing to an infection. I had hoped to get further through the treatment before that happened. It was only when I saw the massive rash which had suddenly appeared on my body that the realisation struck – it wasn’t a sore throat from a cold, but was my throat swelling up and constricting in an allergic response.

I can’t begin to describe the sheer terror that fills your mind at a moment like that. Far more scary than anything to do with Leukaemia, chemotherapy or infections. It’s a very real and immediate threat, and your only thoughts are how quickly can you get to hospital or a paramedic? Will it stop your breathing? Can you beat the clock? What if you don’t?…

Next clip, end of Day 2, relatively uneventful following last night’s unexpected complication. After the injections, the nurse applies small gauze dressings held on with micropore tape, to mop up any small traces of blood and keep it off your clothes. I found that the most painful part of this whole process has been trying to unpeel the tape from my hairy tummy later in the day!

Day 3 slightly more normal, but some side-effects noticed. Day 4 discusses a false alarm with a raised temperature overnight, and sees a repeat of yesterday’s side effects. Day 5, and the fatigue is getting more pronounced. This proves to be the main issue facing me during the week following treatment, where I spend large parts of each day sleeping or resting. It’s very different to ‘ordinary tired’, and something which I was perhaps least expecting or least prepared for.

Although I’m now almost completely neutropenic, so far so good! I’ve managed to remain infection-free and out of hospital. It may seem a little scary having your immune system deliberately compromised in this way, but knowing the risk in advance and planning for it has been a big comfort. I’ve avoided risks by staying home, I’m monitoring my condition closely, and I’m all prepared with a bag at the ready should I need to go to hospital.

I’m now starting the second week following treatment, and still at risk of infection while my white blood cell count is temporarily suppressed. I can look forward to regular follow-up appointments with my consultant, and regular blood counts to monitor the progress of my recovery. I assume at some point a few months down the line I will need a second bone marrow biopsy to confirm if I am in remission. The leukaemia isn’t curable in the regular sense, but if it cannot be detected in the standard tests done on the biopsy sample, I will be ‘in remission’ and the condition may not surface again for perhaps ten years or more.

Here’s hoping!