The next morning, 12th April, 2016, I received a call from my GP who informed me that my platelets were low (23). I asked what that meant and much to my shock he told me that I had leukaemia. The fact that St George’s hospital in Tooting, London, near where I live, had a bed waiting for me was my first clear indication of just how bad things were. I remember a sense of disbelief coupled with a strange calmness as I called my husband, Richard, and a good friend, who hastily packed me an overnight bag. I even told the poor unsuspecting builders who had just started major renovations on our kitchen of my diagnosis. Waiting in A&E, I remember thinking about my children and how were we going to break the news to them, and the fact that I might not live to see Richard and my 25th wedding anniversary. Within an hour I was in a private room on the haematology ward surrounded by staff asking a constant stream of questions; did I have siblings was one of the. Sadly, neither of my brothers were a match
I remember thinking about my children and how were we going to break the news to them, and the fact that I might not live to see Richard and my 25th wedding anniversary
It was at this point I was told I had Acute Myeloid Leukaemia (AML). A Macmillan nurse explained that their aim was to cure me but still that night I prayed and cried myself to sleep thinking about my children and my husband. It was the first of the four hourly observations day and night, which I had over a six month period with only the occasional respite at home – neutrophils permitting of course. Going home was lovely but when I did get home I felt very scared and vulnerable. It’s incredible how reliant on the hospital and nurses you become.
The following morning it was full steam ahead. Nurses began poking and prodding me with needles to fit the PIC line and take a bone marrow biopsy. Usually the sight of needles or blood would make me pass out but I got used to very quickly as I didn’t have a choice. Two days after diagnosis I began my first round of a gruelling regime of chemotherapy (I had four in total). I managed to take a semblance of control back when I made the decision have my hair cut early on. It made the loss of losing if far more manageable. Most other decisions were taken out of my hands and put into those of the specialists. That’s when I decided I would be the perfect patient – I spent my days thinking, reading, watching programmes on my iPad, chatting and laughing with my family, visitors and the staff, many of whom were truly amazing.
I felt very scared and vulnerable. It’s incredible how reliant on the hospital and nurses you become
My family and friends kept my spirits up by frequent visits, endless snacks (most of which my husband ate), lovely gifts, text messages and emails. My son returned from his gap year trip to America for ten days, and my daughter who came up and down from Cardiff, was my rock. I will always be indebted to those friends who fed my family, cleaned my house, sorted out my Christmas tree by the time that came around, did my washing, gave their love and support and visited throughout my illness – I couldn’t have done it without them. As time went by I slowly felt strong enough to take on board more information and do some research myself, always trying not to look at survival rates. I tried to stay strong and positive, but I did have the occasional wobble. My consultant recommended counselling and I had a couple of sessions which really helped me process the situation I was in. My friends told me how strong I was but I can honestly say that I didn’t feel strong all of the time. It was just something that I had to go through and keep believing I could beat.
The longer I waited for them to find a donor match, the more anxious I became. The third round of chemo, was very tough; I had liver failure and spent three days in intensive care. When it recovered I returned to the ward about twelve kilos heavier... Kim Kardashian’s bottom had nothing on me! The problem was soon sorted out with medication and a chest drain. During all of this my husband helped me shower and stayed with me for a few nights as I was very worried about what was to come. I then received the fantastic news that a 9/10 donor match had been found through Anthony Nolan (what an amazing and selfless gift). Prior to the transplant I had a long, scary meeting with my consultant who went into great depth about the procedure, the cons, and the prognosis. The tests prior to the transplant threw up another curveball when they revealed I had heart failure. It was devastating news at the time, but manageable with the right medication.
The first few months were also plagued with fatigue. It was such a big issue it took so much effort to even have a shower or get dressed. I prayed for each day to end and hoped I would feel better the following morning. Again, my friends rallied around and set up a rota to take me to numerous appointments and get me out of the house for a coffee or a walk. Slowly, but surely I gained back the weight and strength and started to feel better. I finally returned to work in October 2017 (17 months after diagnoses) on a phased return. It’s been a huge milestone for me. I am so grateful to my supportive employers for keeping my job open – it really gave me something to aim for during my treatment.
I would be lying if I said I didn’t worry about the future, but now I say to myself ‘Why worry about something that might not happen? Live for the day’.
I go to hospital every five or six weeks for blood tests – my husband says I don’t breathe until I get the results; as a patient you become obsessed with them. I have accepted that the haematology day unit will always be part of my life. I have even popped into my old wards to visit the staff. I have also had my twelve month immunisations and will have my measles, mumps and rubella vaccine (MMR) in September, both enabling me to get out and about. And that’s exactly what I’m doing. I have been on numerous trips over the past six months – to Dublin, France, Austria, Majorca, Palma and Madeira, making up for lost time. We have also booked to go to South Africa this summer. I am really living life to the full again and enjoying every day that I spend with my family and friends. I have met some fantastic people in hospital due to my illness, many of whom I now share a close bond.
I don’t have the same strength and stamina I used to but I have adjusted to my new ‘normal’ with a few gentle reminders to slow down at times. Yes, I will be on medication for the rest of my life, but I know it is giving me a better quality of life too. I would be lying if I said I didn’t worry about the future, but now I say to myself ‘Why worry about something that might not happen? Live for the day’.