Taking time off due to leukaemia

Short version – on medical leave until the end of January 2018

I’m on medical leave until at least the end of January 2018 due to therapy-related acute myeloid leukaemia (t-AML).

I will not be doing any professional activities until February 2018 at the earliest.

You are welcome to make requests for activities from February 2018; I am currently planning to consider those requests in January 2018 and will update this page if that changes.

How I found out that I had leukaemia

On 15th March 2017, my husband left the Churchill Hospital with a new kidney, after three weeks in hospital. We are deeply grateful to his surgical and medical teams, and to the family of the donor who made this possible for him.

Also on 15th March, I was told to report to hospital because I had dangerously low levels of platelets and haemoglobin in my blood. The following day, I was diagnosed with acute myeloid leukaemia (AML).

The type of AML that I have is a delayed side-effect of the chemotherapy that I had in 2001 as part of my treatment for breast cancer, so it’s abbreviated as t-AML. I don’t regret having that chemo because it’s given me 16 cancer-free years.

Treatment from March to July: three rounds of chemo

It turns out that supporting my husband through a complex stay in hospital with very little haemoglobin in my blood was unbelievably exhausting. I didn’t know how horribly tired I was until I received the first of many blood transfusions.

After I got over the initial shock of diagnosis and began treatment, I almost immediately began to feel very much better. Thanks to good Wi-Fi, and being allowed to bring in a few home comforts such as my usual big home monitor, I was able to keep in touch with friends and family.

I had three rounds of in-patient chemotherapy with a few days off between treatments. I got home after the third round of chemo on 3rd July 2017. The first two rounds were pretty easy on the whole; the third round, with a different mix of drugs, wasn’t a lot of fun at all but it did what the doctors wanted it to which was to set me up for my bone marrow transplant.

Bone Marrow Transplant: day zero, 22nd August 2017

On 15th August, I started the preparatory treatment for a ‘bone marrow transplant’. The Bloodwise booklet The seven steps: blood stem cell and bone marrow transplants explains the treatment in detail. It did not involve any knives; I received chemotherapy to kill off my old immune system, which no longer had the ability to keep the leukaemia at bay.

I received a new immune system from my brother. He donated his stem cells through a type of aggressive blood donation, and I received them through a blood transfusion. I’m immensely grateful to my brother who toughed it out through a process that meant he had to endure some injections that caused aching muscles, two 5-hour sessions of being immobile in a specific chair, and a short recovery period. He was totally supportive and cheerful throughout and is completely back to normal. My lovely sister-in-law was equally supportive of him and me and I’d like to thank her too for that and for entertaining their little boy while his father was otherwise occupied.

After I got the new stem cells, I was an in-patient in isolation and endured a process that was deeply horrible but necessary.  I was initially discharged from hospital on Saturday 23rd September.

Day 38 of the first 100 days: recovery after engraftment

I’m publishing this update on day 38. The first 100 days are the most critical. At the moment, I’m glad to say that my medical team is pleased with my progress so far, but I also clearly understand that there may be complications ahead. I am currently on step 6: recovery after engraftment.

My teams

I’m entirely confident in my medical team that they will make the right decisions for me. If they had not diagnosed me and started treatment straight away, I could have easily dropped dead sometime in March, or at any time since. I’m very glad that I have the choice not to do that.

Fortunately for me, I have an extensive support network (as well as the support provided by my hospitals) who are looking after the non-medical aspects of my treatment. They include a life coach, a dietitian, other doctors, a yoga teacher, people who have had a similar type of cancer, people who have gone through other illnesses with similar types of treatment, and many others from all walks of life.

Some requests

Of course I am very appreciative of messages of support.

Medical

  • Do NOT send me any suggestions about my treatment. My medical team has my full confidence.
  • Do NOT send me suggestions about non-medical support. My support team has my full confidence.
  • If you want to help me through this, and you are person who both feels comfortable with and is allowed to give blood, then please DO give blood (UK).
    If you already give blood, you have my heartfelt and personal thanks.
  • If you are under 30, and you are a person who feels comfortable with the idea of helping someone else with this sort of treatment then please DO join the stem cell register (UK).

Professional – complete break until end of January 2018

  • I’m not currently doing any professional work of any sort.
  • You may see me commenting on Twitter from time to time (@cjforms).
  • If you would like me to consider professional work from February 2018 onwards, please feel welcome to ask. I will be thinking about the requests in January 2018.