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) and endometrial (womb) cancer. I’ve had three rounds of chemotherapy, a bone marrow transplant, and a hysterectomy: all have gone well.

I’m expecting to be able to begin some professional activities in February and March, and it looks like I will have some spare capacity starting in April 2018.

If you’d like me to work with you, or to speak at your event in 2018, please feel welcome to contact me.

How I found out that I had endometrial cancer and leukaemia

Early in February, I noticed some spotting of blood from my vagina. My GP sent me for an ultrasound scan, then for a hysteroscopy. On 15th March, I had an appointment with a consultant gynaecologist who told me that I had a barely-detectable, early stage cancer of the womb (endometrial cancer), with the proposed treatment being a hysterectomy. I went through the usual pre-operative tests. Later that day, a consultant haematologist called me and said that the pre-op blood tests had revealed that I had dangerously low levels of platelets and haemoglobin in my blood and must report immediately to hospital.

Also on 15th March 2017, my husband left the Churchill Hospital with a new kidney, after three weeks in hospital. We are deeply grateful to the family of the donor who made this possible for him and to to his surgical and medical teams. I took my husband home from one hospital and drove immediately to another.

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 when I had breast cancer, so it’s therapy-related AML (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

Supporting my husband through his 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 a table for my laptop, 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.

On 22nd August – day zero – 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.

The first 100 days: initial recovery after engraftment

The first 100 days after the transplant are the most critical, but I was very fortunate to get through them relatively easily.

On day 64 towards the end of October, I had the good news that the haematologists decided that I was well enough for them to refer me back to the gynaecologists for the hysterectomy that had been delayed by the treatment for leukaemia. Mental health has its own strange behaviour, and somehow this good news threw me into a couple of quite bad weeks of depression – by far the worst of the whole experience so far. Maybe the depression needed to pop out somewhere and this was its chance.

If you’re suffering from a winter cold, you’ll sympathise with what turned out to be probably the worst medical experience between leaving hospital and making it to 100 days: a bad cold that struck me just as i was emerging from the depression around the middle of November. The cold wiped me out but didn’t need any treatment other than time, some precautionary extra antibiotics, and everyday ‘dealing with a cold’ stuff like plenty of tissues.

Day 105: hysterectomy

As it turned out, I got rid of the cold in the nick of time for my hysterectomy at the beginning of December. The gynaecologists used a ‘keyhole’ procedure that meant I’ve only got a few tiny incisions. I was well enough to be discharged from hospital the next day. I’m under strict instructions to do very little, no driving, and generally to take it easy until at least early January.

Day 114: update and the next 100 days

I feel perfectly OK apart from very tired and a few other bits and pieces of symptoms such as ‘fizzy’ hands and feet – possibly due to the mixture of drugs that I’m taking, possibly due to having a new immune system that’s still settling in, with some effects like reduced haemoglobin compared to normal (but about what the haematologists expect at this stage).

The gynaecologists have handed me back to the haematologists who will continue to monitor my recovery. They expect me to be well enough to start to return to professional activities by the end of January.

My teams

I’m entirely confident that my medical teams will continue to 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 didn’t happen.

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 teams have 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).
    If you are already on the register, or you have already donated stem calls, you have my heartfelt and personal thanks.

Professional – complete break until end of January 2018

  • I’m not currently doing any professional work of any sort.
  • I expect to restart some professional activities in February 2018
  • You may see me commenting on Twitter from time to time (@cjforms).
  • If you would like me to consider professional work from April 2018 onwards, please feel welcome to ask.