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I didn’t believe that the nurse walking over in my direction was actually heading towards me. My GP had reassured me that my colourful, bruised limbs were due to idiopathic thrombocytopenic purpura (ITP), a disorder that can lead to easy or excessive bruising and bleeding, and that I’d munch my way through a large dose of steroids, develop ‘moon face’, fidget a lot and I’d be fixed. I had even searched for my symptoms on Google and diagnosed myself with this. I’d be back to normal in a couple of months. Job done. The 4th December will forever be etched in my memory.
My clinical nurse specialist and soon-to-be doctor sat me in a quiet room. My mum and my very good friend were both with me as the news was delivered very pragmatically by the doctor and with a massive sprinkle of empathy and kindness from the lady in blue. Lots of things were thrown at me in a short amount of time but the sentence I clung on to was, ‘We are awaiting confirmation, but the type of leukaemia we think you have carries a high cure rate. We should know by the morning.’ I remember thinking, ‘Please, please let it be that one.’
With a diagnosis of APML confirmed, my new life as a cancer patient had started. PICC line in, first chemo in and I had only been there less than 24 hours. I had no idea at this point as to how sick I was, I was totally focused on the end goal, getting better.
My room quickly became colourful and full of stuff. I had books, movies, cards to read and a huge array of wonderfully smelling hair stuff that a friend had kindly brought in. I looked at him when he gave it to me and said, ‘But it’s all going to fall out.’ His reply was, ‘Babe, if it’s coming out, it’s going to look fabulous as it departs.’ That same day I asked him to help me get rid of my ponytail, as I wanted it to be donated to the Little Princess Trust. He cried and I told him to man up.
My life has always been about numbers and achieving, so after counting the days, weeks, months, cycles and doses, I had deduced I’d be done by Easter.
My body just wasn’t working. Every day I wished my blood results would come back showing an increase in its counts, but no. I heard the rumble of the trolley as it headed towards my door and was then hooked up for hours to pumps and lines, delivering life-saving blood products including platelets and plasma. I passed this time by cycling on a stationary seated bike I had acquired from the physiotherapy department, drinking tea and watching inane episodes of American soaps. My mum visited me everyday and sneaked in homemade soups and treats. On Christmas Day my sister brought in the best turkey and cranberry sandwiches and my friends filled my fridge with huge amounts of chocolate. I developed a penchant for Babybels and a dislike for anything that was presented to me on a hospital plate.
Finally the day came and I was discharged to the care of my mum. I was 37 years old and allowed home under the proviso I was careful, I didn’t do anything I shouldn’t do and that I took a whole heap of medications. Antivirus, antifungal, antibiotic, anticancer, antibleeding, antihormone, anti everything! Coming out of hospital was terrifying. I was scared of everything but each day was a day closer to recovery, I had to think like that.
I mostly behaved but had a few minor mishaps; I fell over a Labrador, split my knee open, had stitches, cut myself on a piece of glass, walked, jogged, ran a few times but I was quickly reminded that I should be planning the rest of my life not my next run. Lesson learnt. I was lucky enough to have my further treatments as an outpatient. I baked and smiled my way through the next few months; my mum’s baking cupboard had never seen so much action!
Next on the agenda was treating the PML RARA fusion gene created by the translocation of chromosome 15 and 17. I wanted a negative PCR test. This finally came in February and the weeks of vile treatment was now all worthwhile. My doctor announced I was in molecular remission and I could celebrate. I rang everyone I knew and was desperate to get out of the hospital to tell the world.
I had one final cycle of treatment to go and this was delivered on the 13th March. I was lucky; I’d made it, still smiling and undefeated. Life now is still turbulent. Every 12 weeks I check myself into the unit as a patient, I take a deep breath as they draw the bone marrow aspirate, I forget the pain and think of all the things I still have to do. I compartmentalise the action and the potential consequence. This 12-week cycle is my life for the next few years.
Nothing has changed. I still do what I want to do. Within six weeks of completing my treatment with the help of my fantastic family and friends, I fulfilled my promise to the unit and hosted a massive party called the Wig Bash raising over £7,500 for the department. I have climbed two of the UK’s biggest mountains, I have gone back to work and am loving every minute of my job - plus I can knock out a decent 10k time. This is who I was before the cancer and I refuse to let this disease change me. We are people that can. We are human, fight or flight, and I choose fight.