As far as I knew my condition was relatively stable back in April, when I posted about my first year of being diagnosed with Chronic Lymphocytic Leukaemia (CLL). One year in I had just about got used to the new normal. Little did I know then that like the path in this photo I took of the South Downs, my journey was about to take a detour.
I have been living in what some people call “CLL purgatory”. I was too sick to work, and was struggling to do very much, but not so sick that I needed treatment yet. I was on something called ‘watch and wait‘
Just a few days after my article was published in early May I had a blood test done. That showed my lymphocyte count had more or less doubled since February moving from 16,000 to 27,000 in three months.
It was enough to raise the eyebrow of the lymphoma registrar who was reviewing me that day, and they went to speak to the consultant. But it was just one reading so I was sent home to wait for another three months.
Over the following three months from early May to early August I had several infections and a couple of blood tests all of which suggested my blood count was on track to double again by early August. This was confirmed on 4 August with a count of 53,000.
My lymphocyte count is now doubling every three months which is quite rapid growth for CLL.
I have also had a worsening of my fatigue and muscle pain, and developed joint pain and a strange numbness sensation in my hands and feet suggestive of a peripheral neuropathy. My fitness levels have dropped further and now I often experience an increased heart rate as if I was running when walking slowly around the house. My lymph nodes are also growing quite quickly.
My doctors have run some tests to confirm I don’t have any other cause of the muscle, nerve, and heart rate symptoms I am experiencing. I will get those results this week, but my doctors expect that my heart itself will turn out fine and all these symptoms will be related to my CLL.
On 4th September I will have one more blood test. If it still shows this rapid upward trend then I will be starting chemotherapy or similar treatment later in September, possibly as part of a clinical trial. Obviously the need for treatment is is prompted because of the illness becoming more aggressive, and I may also face side effects of the treatment. However, there is also the hope that treatment will lead to an improvement not just in my blood counts but also in my symptoms.
If my count doesn’t drop miraculously, then please also pray for wisdom for me, my doctors, and for God to guide the computer to randomise me to the right treatment if I do go ahead with the trial. And pray that God would restore me to full health whether by a miracle or through treatment.
I am a great believer in the power of video or face to face communication to convey emotion, and because I feel that many of you are genuinely my friends I first shared this news online via a Facebook Live video stream which I embed here: