Having watched my 72-year-old father struggle with the side effects of treatment for AML in the weeks before he passed away in 1995, I can vividly recall praying to never find myself in the same situation. He was diagnosed very late in the progression of the illness and was given a prognosis of just two weeks. He astounded us all and lived for another five months but it was hard to see him so poorly.
Helena, one year post treatment for AML
I didn’t know anything about leukaemia or AML before my dad’s diagnosis. He was from a generation that didn’t discuss their feelings or show affection and even though I knew he loved me I don’t recall either of us saying it until the day he was diagnosed. It definitely brought us closer together. I kept thinking stuff like this only happens to other people’s dads, not to mine. He coped with the treatment magnificently, never complaining or showing any sign of weakness, as he would have seen it. The consultant said he couldn’t cure him but he could extend his life for a short time. Watching him so dreadfully ill and not being able to help was so upsetting. I still can’t bear to think about it, but I’m pleased he passed away at home, as he had wished.
Fast forward to 2008 and my own AML diagnosis at the age of 51. It is, as far as I know, not a hereditary illness, but rather a terribly unfortunate coincidence. I remember thinking about my poor mother, having lost her husband to the illness, and now she was having to face the possibility of losing her daughter to it too. We never discussed the fact that I could die. I didn’t want to bring up all the painful memories of my dad for her.
Strangely, my diagnosis made me feel closer to my dad than ever before, as I was now dealing with this awful disease just like he had. I had so much respect and admiration for him knowing he went through his treatment aware of his inevitable outcome. It was overwhelming. I tried not to think of my diagnosis as cancer. I told myself I had AML. It was always referred to as that in hospital too. I don’t know if it was a deliberate tactic by the nurses or not but, unlike my father, I was told right from the start that they could make me better. That thought stayed with me throughout.
"I was told right from the start that they could make me better. That thought stayed with me throughout."
It all started when I went to see my GP suffering from a recurring sinus infection that I just couldn't shake off. He thought I looked rather pale and suggested a blood test. This was arranged for two weeks later but within a few days of seeing him, I began to feel really unwell. A doctor came to my house and took another blood test. A few hours later, I had a telephone call telling me I might have leukaemia and an ambulance was on its way. I remember asking “is that bad?” I think I went into instant denial.
I’m sure the doctors knew I did have leukaemia but as they had to carry out more tests to confirm, they couldn’t actually say. I remember telling my mother and screaming, but there were no tears. It was like an out of body experience. She had been telling me to go to the doctors for a while but I just kept saying I was fine. I didn't feel really ill until the few days leading up to my diagnosis. It wasn’t until months later that my mother said she’d already suspected what it was because I was saying the same things my dad had about feeling tired, having a sensitive mouth and finding bruises. I had started to fall asleep in random places too due to being fatigued. I even fell asleep standing up at the bus stop.
Helena and her friend Peter taking part in a sponsored dog walking event for the local hospice in May this year
The ambulance arrived within half an hour and I was incredibly calm, although looking back, it was probably shock. I was taken to Aintree hospital and from that moment my life was not my own. I had my first of six bone marrow biopsies the following morning. The thought of it absolutely terrified me. It did hurt a little, but I think the expectation of it was worse than actually having it done. Later that day, I was told I had AML. I can remember every single word of that conversation. At that point, I handed all my trust over to the doctors and nurses. One commented a while later that I’d looked like a rabbit caught in headlights when I first arrived. I spent the first night sobbing in my bed. All I could think about was my dad.
I responded well to the first cycle of chemotherapy. The consultant said I had textbook results. But my blood took an unusually long time to recover after each cycle so I was I injected with a growth hormone daily for two weeks after chemo to give my platelets a boost. I couldn’t understand all the numbers and percentages of red and white cells reeled off to me daily, so I would just ask if it was good or bad and that was enough for me. I suffered a few side effects but one really disconcerting thing that occurred during my third cycle was that I lost the ability to tell the time for two weeks. I would look at that clock on the wall and just couldn’t understand what it said. It was very strange! After continuing to respond well to the second cycle of my treatment, a bone marrow transplant was mentioned. However, with my consultants’ blessing, I decided against having a transplant as it wasn’t a complete necessity for me to undergo one. Why rock the boat, I felt. The thought of it terrified me. During my third cycle, the lining of my mouth was badly affected from the treatment and it eventually fell off. I was placed on morphine for six days because the pain was intolerable. I came home three times for five days during my six months in hospital, but my temperature shot up during my second stay at home and I had to go back in after two days. I thought that after watching my dad go through his treatment that I knew what to expect, but nothing can prepare you for your own journey.
"I thought that after watching my dad go through his treatment that I knew what to expect, but nothing can prepare you for your own journey."
I had four cycles of chemotherapy in total and was off work for two years. I was just under eight stone at diagnosis and just under six when I finally went home. A few days after I finished my fourth and final cycle, I developed the dreaded infection you spend every single minute in hospital praying you won’t get. It was in my Hickman line so it was removed and I had to take a course of antibiotics. I can honestly say this was the only time during my treatment than I really thought I might not get better. I felt so ill and it seemed relentless.
I am most definitely not the same person as I was prior to my AML. I’m more calm, patient and tolerant of the things that would usually annoy me. I used to be a real clock watcher, especially at work, counting the minutes until it was time to go home. That has completely changed. I can’t really explain why this has happened, but perhaps it’s because I’ve come to know that life really is too short.
You really do find out who your friends are when you have had a life-threatening illness. Quite a few have been crossed off my Christmas card list, but I have made so many new ones too, including some neighbours who, I barely knew, have since become really close friends. The support was overwhelming and I will never forget such kindness.
I didn't know at the time, but my treatment was far superior to my dad's. The options to treat leukaemia have improved vastly in the years between his and my diagnosis, with mine being tailored to my specific needs. I have been in complete remission now since October 2008 and I feel so happy and blessed. I have learned that the most important things in life are family, friends and good health.
Sounds such a cliché but it really is so true.
Do you know someone who has been affected by acute leukaemia? If so, get in touch here.
– Subscribe to our Bpositive bulletin –
– Subscribe to our Bpositive bulletin –
RSS Feed
