I’d been unwell on and off for a year or more and can’t really say this was related, but more symptoms started to appear over the course of a few months. I started having dizzy spells, aching joints, bruises, tiredness and a persistent nosebleed. I also had what I thought was a chest infection which turned out to be pneumonia.
My initial diagnosis consisted of the following:
- Grief from the death of my Father
- Knee joints not connecting properly
- 6-hour nosebleed wasn’t diagnosed as anything
It took five visits to the doctor and a trip to A&E before I was offered a blood test.
After having a blood test, I got the call from my doctor on 29th September 2017—my partner’s birthday—that shook me to the core and completely turned my life upside down. The blood tests showed I had acute myeloid leukaemia (AML). I was told to pack a bag immediately and head straight to hospital. There I met my consultant, who took my bloods to confirm exactly what type of leukaemia I had, and told me I had 80% blasts and maximum 12 days left if I didn’t agree to chemotherapy almost straightaway. My family were all informed and were devastated, as was I.
Little did I know that this was to be my home for the next six weeks.
I started my first round of chemo and likened it to cherryade as it was bright red. This knocked me for six and I developed a rash all over my body. I also had mucositis, a painful mouth infection where my gums ended up covering my entire teeth and I had numerous ulcers. For two weeks I lived on soup, ice cream and mash. I’d never felt so ill in all my life and the fatigue was indescribable. I became bed bound. My hair was falling out so my friend came to the ward and shaved my head as I would find my hair everywhere. I donated my hair to the Little Princess Trust as it was very long.
Results from bloods and the dreaded bone marrow biopsy I had to have revealed that the chemo hadn’t put me in remission and the blasts were still there. It was now becoming a race against time, so after a short break at home to recuperate, I was admitted for the next round of chemo. This time it was going to be more potent and toxic. I likened this one to Irn-Bru. My fighting spirit came out for this round and, feeling stronger this time than the first, I was determined to get better and beat it.
After my next biopsy, it showed I was in remission and I was elated, but this was short lived because the results also showed that my bone marrow had taken a battering, giving me grade 4 fibrosis. This meant it was extremely likely the leukaemia would be back within months and with a vengeance, so the only possible solution would be a stem cell transplant.
I was scared as I knew little about what this entailed, but it sounded like my only choice. A meeting was set up at a hospital 75 miles away from home, and when I first met the consultant and had “the talk”, I was petrified—it sounded like a game of Russian roulette; it might work and it might not. So many side effects and talk of death made me realise I had a massive decision to make and I wasn’t sure if I was strong enough or my body could take it. Many nights were spent crying. I decided to go ahead and try to save my life in any way I could, regardless of the worst-case scenario.
First, I needed a donor. My brother and sister weren’t a match, so Anthony Nolan were contacted and they amazingly found me a 10/10 match with a 30-year-old male from North America. I was over the moon and so very grateful for this selfless person who would donate their cells for me. The date was set for my transplant and the hospital was to be my home for the next few weeks. Fortunately, my partner was able to stay on the grounds.
I was given a sheet with my regimen on for intensive conditioning therapy and antibodies, and this treatment was going to be one of the hardest parts to get through, as I knew from “the talk” that the side effects could be extremely debilitating, as could the fatigue. After getting through the regimen, my transplant date was 8th February 2018 which was to become my re-birthday.
It was an incredibly emotional time watching my donor’s cells infused into me and giving me a second chance at life.
I was in hospital for three weeks, and as soon as my neutrophils reached 0.5, I was allowed home. I was still classed as neutropenic and had to be careful with what foods to avoid. Plus, a list of things to be careful with and rules to follow. The overwhelming tiredness and fatigue and being wheelchair-bound made me realise just how much my body had been through. Not to mention the emotional impact of it all. The side effects had been pretty gruesome, especially the BK virus where I was on the loo every 20 minutes, but with a determination and strength and love and support from my family I had come out the other side.
Those first few months were spent mainly indoors as I had no immune system, and if I did venture out, I had to wear a mask for protection. I had to take 35 tablets a day and I’m no tablet taker. Clinic appointments were twice a week with regular blood checks, and a bone marrow biopsy showed I had 100% chimerism meaning I’d completely harvested my donor’s cells and was now 100% donor. This was the best news I could have wished for.
I was borderline 100 days when I developed GvHD (Graft-versus-Host-Disease) of the gut, showing bowel and gut problems. I was admitted and ended up being on the ward for a month. I was put on prednisone steroid tablets and whilst they helped my GvHD, they brought on a new set of challenges over time.
After taking steroids I started gaining lots of fluid in my legs, and at one point my knees were measured and they were 52cm. This left me virtually immobile as my legs were so heavy and I was covered in blisters that oozed fluid, making me leave puddles wherever I had sat. Emotionally this was another particular low point. District nurses told me not to worry, but when I developed an open sore on my foot, I knew this was serious. I got admitted and the consultant told me that my protein was dangerously low and it didn’t look good. I also had a foot ulcer and was close to losing my foot. I found myself having to fight for my life yet again. I was on the ward for two months and within that time I became steroid-induced diabetic and caught numerous infections, something else to contend with, but I was alive and that was all that mattered.
After two months I was transferred to my local hospital and spent another month recuperating and having physio as I was still immobile and had lost all my muscle mass. Over time I beat diabetes and came off steroids and my protein returned to normal, so I was allowed home.
I’m 21 months post-transplant and still in remission, something I never thought I’d be in those early days of diagnosis. I have thanked my donor for saving my life and hope to meet or correspond one day. I do live with side effects from the chemo and transplant, but it’s a small price to pay for living. Slowly but surely my mobility is returning. On a bad day I still use a wheelchair for long distance and on a good day I walk with a stick. Not bad for saying I very nearly lost a foot and couldn’t walk at all.
I’m always being told I look well but it’s very hard for those that haven’t gone through my journey to understand lasting side effects. I have since been diagnosed with PTSD and am only just being referred for CBT and counselling. I don’t feel there is enough out there to cater for the emotional impact of leukaemia as it’s such a long journey, with lengthy hospital stays and readjusting after being extremely hard I have found.
I hope my story will help raise awareness of the symptoms that are all too commonly shrugged off by doctors, and will help people recognise what the symptoms are.