Leukaemia – March 2017 to February 2018

After treatment in 2017 for therapy-related acute myeloid leukaemia (t-AML) and endometrial (womb) cancer, I returned to part-time work at the beginning of February 2018.

In March 2018, I did the Endnote at the Service Design in Government conference in Edinburgh.

If you’d like to help other people who have leukaemia, I’ve got some suggestions about how to help at the end of this post.

How I found out that I had endometrial cancer and leukaemia in 2017

Early in February 2017, 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.

December 2017 to February 2018: 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 was under strict instructions to do very little, no driving, and generally to take it easy until at least early January.

In January 2018, the gynaecologists handed me back to the haematologists who will continue to monitor my recovery. I was able to return to part-time work in early February, starting with a couple of days each week.

Many thanks to my teams

I’m extremely grateful to my various medical teams. 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.

I’m equally grateful to my extensive support network (as well as the support provided by my hospitals) who looked after the non-medical aspects of my treatment. Many friends and family rushed to help in various ways, often at no notice.

And finally, thank you to everyone who took time to send messages of support. I really appreciated them.

Help someone else in future

If you already give blood, have registered for a stem cell register, or have already donated stem cells then you have my heartfelt and personal thanks.

If you want to help people like me who have leukaemia, and you are person who both feels comfortable with and is allowed to give blood, then please give blood (UK).

If you are a person who feels comfortable with the idea of helping someone else with this sort of treatment then please join a stem cell register:

featured image of the ‘blood wagon’ by James West, creative commons licence