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In June 2015, I would have said that I was fit and healthy. However, I had severe joint pain in my left arm and leg, I had an awful, heavy period, passing huge amounts of clotted blood, which I put down to the menopause, and I was tired and exhausted. I couldn’t walk around the supermarket without stopping to sit down, and I had a couple of sores that wouldn’t heal. I guessed I had the flu and must be run down.
I went to see my GP for a repeat prescription and mentioned the sores. She thought perhaps I was anaemic and ordered a blood test. In that moment, she saved my life. 24 hours later she told me that I had leukaemia.
Three hours after my diagnosis I was in ITU receiving chemotherapy and life as I knew it stopped. I was 49, living with my long-term partner Woody, mother of three teenage boys and a daughter in the middle of law exams. I ran a home, managed Woody’s business, held down two part-time jobs, was living in a part converted house, had a dog, a cat, and my elderly father had recently moved to be near me. I ran, swam, gardened, cycled, sewed, organised and socialised. Now I was told that I was fighting for my life.
I was full of positive energy. “Kicking cancer’s ass” became my mantra, friends and family commented on how strong I was.
In hospital for weeks, I became an expert in my own disease, acute myeloid leukaemia (AML). I learnt very quickly that blood cancer is different, it knows you personally. You will never meet anyone else in the same situation as you. I had genetic mutations that made relapse more likely, made treatment success less likely, and my strength started to fail me. Blood cancer is lonely.
My first course of induction chemotherapy was unsuccessful. I was told that I needed a stem cell transplant but first I must be in remission; the consultant was not optimistic. She told me to put my house in order, as if this chemotherapy failed I would have weeks to live.
Woody and I decided we would tell no one. Woody told me he believed this chemotherapy would work and he believed that I would be well; he has never failed in that belief. We decided to get married.
We had an incredible, happy wedding, created memories, just the family. I came out of hospital for the day. That night, I got pleurisy and I don’t remember the next four weeks. As soon as I was well enough, I had my second course of chemotherapy. Woody was right; I went into remission.
After the chemotherapy, I was sent home to wait for transplant. I had lost 13kg from my 5ft frame, my hair was gone, I was being fed by NG tube and could hardly walk - I needed to build my strength.
My transplant was on November 6th, such an anti-climax after so much heavy-duty treatment. Physically a lot of the hard work was done, mentally it was just beginning. In isolation for long hours at the hospital, amazing friends and family kept in touch and visited all that they could, but post-transplant was a really difficult time, especially once I returned home.
It was January. Woody, my children, and friends were working all day. The pets had been outsourced, the half built house was cold and I was exhausted. Chronic graft-versus-host disease (GVHD) meant I was on steroids along with the usual cocktail of post-transplant meds. The reality of what I had been through started to catch up with me and I suffered with a horrible, debilitating depression.
I didn’t believe I could live with blood cancer, with the long-term treatment, side effects and constant hospital appointments. I became suicidal, I saw no reason to live when I believed I was just waiting for leukaemia to kill me; I wanted to take back control.
I have an amazing husband, family, friends and medical team. I couldn’t see my value back then, but thankfully they did. They stepped in, I was hospitalised, appropriately medicated and supported. I began to see that there is a life beyond diagnosis, beyond transplant, and it’s wonderful.
My recovery has been hard; blood cancer is unpredictable, which makes it difficult to manage for both the doctor and the patient. You can’t plan, as you don’t know how you will react, feel, respond. Your treatment changes sometimes hourly, daily. Your appointments alter constantly, you have to have a go bag ready. My liaison nurse and emergency hospital contact are on my phone above my children. You become obsessed with avoiding infection, listening to your body, recognising changes.
I am now 21 months post-transplant. I am still receiving treatment, have chronic GVHD, and frequent check-ups.
Leukaemia has made me a better person. I am more patient, calmer, empathetic, and kinder. My relationships and friendships are more emotionally intimate. I value time instead of wasting it, and I find joy everywhere.
This year we have bought a camper van, my first grandchild is due, and I had a girl’s weekend away. I have been to see live bands, comedians, gone to the races, and I have returned to work. I am dancing, singing, doing yoga. Life is good and I have never been happier.
Prognosis is now a conversation that I have with my consultant then lock away in a dark bubble in my head and don’t return to. I know that I would rather have five incredible, happy, loving years on this wonderful planet, than 50 unhappy years. It has been a long journey, and I am still travelling.