My Story

I am in remission for Leukaemia (AML), I am on some medication still to help my recovery from the GVHD.

I want to share my story with you because when I was diagnosed, I couldn’t find anyone to talk to, who had gone through what I had just been diagnosed with.

There was no one I could talk to who could help me gain any sort of understanding of what I was about to face…. and I had so many questions in my head, along with the shock and anger that was raging through my body.

The nurses and doctors were great, but they hadn’t experienced AML and I needed to connect with people who had gone through this and had come out the other end.

It turned out my condition was quite complicated to diagnose.

It actually took the doctors a whole week to discover I had AML.

This was because I was showing no symptoms at all. .I had been told by quite a few people I looked like I had lost a lot of weight, but I had been trying to do that.

The registrar who sat with me to break the news was so lovely. He was holding back his tears as he explained what they had found. I also had a nurse sitting in the room with me, who I later found out was to be my wonderful specialist nurse.

I remember asking the usual questions: Will I survive this? Why me? What did I do wrong?

Of course, no one in the room that day could predict anything, but I was told because I was young and healthy I had a good chance of survival and that was all I needed to hear. I made a pact with myself in that moment I would remain positive no matter what happens. I will smile through my pain and cry as often as needed to. I was determined to stay strong for myself and my family, especially my children as they were still young.

I made a promise to myself I wasn’t going anywhere but home.

I was allowed to visit my daughter for Christmas dinner.

She picked me up in the morning.

It was the strangest feeling to be in a car travelling on the roads just like a normal person. The daylight was hurting my eyes and I did feel pretty apprehensive in case something happened while I was away from my hospital bed. But thankfully it didn’t and I had a wonderful day.

She took me back to the hospital that evening and it was hard to adjust again, even though it had only been one day out. I wanted to be back at home with all my things around me, not stuck on a hospital ward. Depression was one of the hardest things I had to battle with mentally while I was in hospital. That and the guilt for not being at home for my children.

What happened next made me realise that despite all that I was going through I was one of the luckiest women alive, because my sister was found to be a donor match. I had been given another chance of life and I will be forever grateful to her for that.

I had my transplant in March 2012. I then had what I call a top up in Feb 2013.

At the time I was receiving the transplant I actually felt fine, but as soon as it was all over the pain was unbearable. Worse than the Chemotherapy and Radiation combined.

I ended up on Morphine, which In time put me in a coma for a couple of weeks.

This extended my stay in hospital for months. I was bedbound for quite a lot of the time and as a consequence, my legs literally stopped working.

When I eventually got to go home, I was very weak and wobbly on my feet as I had spent so long in bed. I had to teach myself to walk up and down stairs again. In fact, I had to teach myself how to do many things again, including living.