April 14, 2019
You had a blood test today…there is something wrong with your blood, so I need you to get to hospital immediately…” my doctor calmly informed me.
Back in April 2015, my life literally changed overnight and all those clichés like “life is too short”, “you never know what’s around the corner” and “life is not a dress rehearsal” were no longer abstract to me. I’d been complacent about life, thinking I had all the time in the world to live; how wrong I was, I’d wasted so much time.
I had been feeling unwell for about 10 days or so, which started with an awful headache that I couldn’t get rid of. This then developed into flu-like symptoms, but I also had a very painful neck, a rash and some bleeding which were worrying as they weren’t usual for flu. I still didn’t think there was anything seriously wrong with me, so I didn't visit my GP until I needed a sick note for work, which was about two weeks after this started.
At my doctor’s surgery I had a consultation with their nurse… as I was about to leave she suggested I have my bloods checked to “see if anything would show up” … This decision undoubtedly saved my life because by the next day I had 95% bone marrow failure, 35% leukemic blasts in my blood stream and sepsis. Another 24 hours without treatment and I would not be here today.
After the blood test, that night, my GP rang me and told me I needed to go to hospital immediately. He even suggested he’d call an ambulance due to the urgency. All the way to the hospital, which is 50 minutes away, I kept thinking “what can be wrong with my blood?” and leukemia or cancer never once crossed my mind. My medical notes state that I was admitted with “deranged bloods… query acute leukemia” because I had Auer rods in my blood stream, my white blood cell count was way above the normal range and my red blood cell count and platelets were also completely in the wrong ranges.
I was diagnosed with acute myeloid leukemia (AML).
In the early days I would say we were in a whirlwind, not really knowing what my diagnosis meant, not knowing anything about AML, its treatment or how it would affect us. My treatment had to start immediately because of the very aggressive nature of AML so we had no time to take it in, no time to tell our friends and family or to make any arrangements. I was started on oral chemotherapy within 24 hours while my bone marrow biopsy cytogenetics were done to determine my type of AML. It was very surreal and though my husband and family broke down around me, I was just numb.
They told me I had the NPM1 mutation, and this was M5 under the WHO classification.
My treatment consisted of two cycles of induction chemotherapy – daunorubicin and cytarabine, twice a day for 10 days and two cycles of consolidation chemotherapy, high dose cytarabine twice a day for 5 days.
There were many, many complications during my treatment including infections, several incidents of sepsis, neutropenic colitis, a meningitis scare, kidney problems, heart problems, I had a tube inserted through my nose into my stomach due to severe weight loss and lack of calorie intake, I needed numerous blood transfusions and platelets, growth hormone injections and had unbearable pain leading to me being put on a syringe driver with diamorphine and Nozinan®.
After spending months in hospital, I lost a lot; confidence in my own body because of the damage from my treatment, my career as my employer didn’t keep my job open, my bond with my daughter (who was 8 at the time), friendships, my independence, appetite and my identity (due to hair loss and extreme weight loss) to name a few. There was a significant financial impact for me and implications on insurances.
Waking up every day with physical pain, the chronic fatigue, the PTSD that can be triggered anytime, the fear of relapse and secondary cancers is distressing. It has been really tough, a rollercoaster of emotions; some massive lows with lots of uplifting and special moments along the way. It’s lonely and isolating and I have had a lot to come to terms with.
In the beginning I felt like a stranger in my own life; I didn’t even recognize my own face in the mirror and the things I thought I cared about no longer had any meaning. I remember thinking, when I was alone in my hospital room, just me, my body and this deadly leukemia, how insignificant it all was; after all, none of it was going to save me. If you don’t have your health then you don’t have anything. So, once I’d finished treatment it dawned on me pretty quickly that I needed to do something and as time has gone on, I’ve sadly seen how devastating AML can be. Doing nothing is not an option. I am lucky enough to still have my life so I can’t waste it by not giving back like those who’ve done the same for the past 40 years or so. The way I see it is that if those in the past hadn’t done their fundraising and if there hadn’t been research, trials and breakthroughs over those years, I would not be here today.
Ever since my diagnosis I’ve been open and honest about my experience; for me it feels like the right thing to do. I don’t have the answer, the cure, or a bottomless pit of money to fund research, but I do have my voice. I can speak on behalf of other AML patients and honor those who are no longer with us and those yet to be thrown into this scary world.