I didn't have any concept of what leukaemia was and I certainly didn’t know how to spell it but that all changed in August 2012 when a young doctor told me I had it. To say I was shocked is an understatement. I was 46 and had five children. The eldest had just finished university and the youngest was only six. I instinctively knew that I had to survive this for them, whatever that meant doing. I didn’t want them to be scared for me and I wanted to show them I could be brave.
The diagnosis came back as ALL and treatment started immediately. As I sat in my hospital room preparing for it, my family were preparing to go back to school and university. I remember sewing on name tags whilst hooked up to my chemotherapy drip. I didn’t return home for nearly eight weeks. In that time my kitchen was totally replaced. It had been planned but I still feel odd when I look at it and think about the reason I missed its arrival.
The diagnosis came back as ALL and treatment started immediately. As I sat in my hospital room preparing for it, my family were preparing to go back to school and university. I remember sewing on name tags whilst hooked up to my chemotherapy drip. I didn’t return home for nearly eight weeks. In that time my kitchen was totally replaced. It had been planned but I still feel odd when I look at it and think about the reason I missed its arrival.
Rachel in hospital with her family after her bone marrow transplant in 2015
After the chemotherapy, the obvious next step was to have a stem cell transplant. I say obvious, in actual fact it was the hardest decision I’ve ever had to make. I went to the hospital i was to have the transplant in in Bristol to find out about it and I wept all the way home. How could I make such a risky and terrifying decision? Fortunately, I met a lady who’d had a transplant just before I had mine and I realised that people do survive. My transplant took place in January 2013 and it all went really rather well. I had to stay in Bristol (90 miles from home) for four months which was hard but my amazing family just kept going and my friends came and stayed with me for much of the time.
I returned home in triumph and it really felt like I'd beaten ALL. For some people that is how it happens. Sadly though, for me, it seemed as though there were going to be a few more twists in the tale. Just before my one year anniversary a bone marrow biopsy showed that the leukaemia was returning at a very low level. I returned to Bristol and had three Donor Lymphocyte Infusions. Amazingly these put me back in remission and off I went again!
Life was good. Although I was nowhere near normal (whatever that means!) I was enjoying holidays with my family and just being there for them. At my second year anniversary the biopsy showed low level relapse again. I returned to Bristol for another Donor Lymphocyte Infusion but rapidly began to feel unwell with stomach pains. Within the month I was diagnosed with a leukaemic tumour in my pelvis that was blocking my kidneys. The doctors were unaware of the damage it was doing until my kidneys failed. It was at that stage that my local hospital told me that we had come to the end of the line.
I am living my life and enjoying my amazing family and friends...and that is not guaranteed for anyone
I guess it was then I discovered quite how determined I was to live. Having spoken to my consultant in Bristol I knew there was a new treatment being trialled in America. I’m also a member of an International ALL page on Facebook which included friends from America who’d tried this drug successfully. To me this seemed to be exactly what I needed. But, despite the tumour in my pelvis, I hadn’t relapsed badly enough in my bone marrow to get a place on the trial. For a while it seemed as though that door was firmly closed. It wasn’t. My consultant approached the drug company and managed to get the drug on compassionate grounds. I then began a three month trial of Blinatumomab. The drug hadn’t really been tested on tumours but rapidly mine began to shrink and, eventually it disappeared. I was deemed to be in remission again.
The obvious move from here was to have a second transplant with a different donor. It proved tricky to organise because it isn’t common practise and getting funding for it wasn’t guaranteed. Again, my consultant came through for me and I suddenly found myself back in Bristol, this time for a four month stay. This time it was much tougher. On top of that, my consultant wanted me to get graft versus host disease (GVHD) in a mild form as soon as possible. While it can be life-threatening in a severe state, a small dose of it can be a useful indication of whether your body is taking to the donor cells. Unfortunately for me, on day 26 I went into hospital with a temperature and a few spots but quickly it became apparent that GVHD was taking hold of me in a big way. I didn’t come out for yet another four weeks!
I’m currently almost six months post-transplant and feeling pretty good. I’m having to learn to live with skin GVHD but that seems a small price to pay for the gift of life. I’ve met so many amazing people on my journey, many of whom are no longer here and my eyes are open to the reality of this disease. But I am living my life and enjoying my amazing family and friends. In so many ways I am proud of myself and the way I’ve taken whatever horrid things have been thrown at me. I have a much clearer view of what is important to me and I'm enjoying living as mum, wife and friend rather than as a patient. Life is often just too rushed to stop, look around and appreciate what we have. Without leukaemia I might never have got to the stage where I can say I'm proud to be me. I’m trying my best to be a support for others going through this confusing maze of drugs and decisions but most of all I’m just enjoying the sensation of being alive.
The most important thing I can say to anyone on the same journey as me is to go forward with hope and determination. It's difficult and unpredictable but the right attitude can take you a long way. Love and laughter have both really worked for me.
Do you know someone who has been affected by acute leukaemia? If so, get in touch with us here
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