Completely out of the blue in May 2011, I was diagnosed with acute myeloid leukaemia (AML) after not feeling well for a couple of months. I know something wasn’t right but I couldn’t put my finger on what the problem was. I felt very tired and spots kept appearing on my skin, which was odd because as a teenager I hadn’t really suffered with bad skin. I also had problems with my ears and they started to leak. When I visited my doctor I asked if any of this was connected and was told it was highly unlikely.
I had also developed a sore throat which became so painful that after three days I attended our local drop-in centre which is attached to one of our NHS hospitals. I was told I had a bad case of tonsillitis and was given two weeks’ worth of antibiotics. I carried on going to work but I didn’t seem to be getting any better and felt more tired than ever. I visited my doctor again who prescribed more antibiotics and also referred me to have a blood test a couple of days later.
I had my blood test on the morning of Wednesday 25th May (I don’t think this date will ever leave me). I went back to work and thought to myself that if I felt the same in a few days, I’d go back to the doctors and get signed off as I simply had no energy.
That night, when I got home from work, I received a phone call from my doctor saying that my blood test was back and I needed to come to the surgery right away.
I was told that the results indicated that my white blood cell count was zero and that
Queen Alexandra Hospital in Portsmouth wanted me to be admitted for tests immediately as my doctor was concerned that I could pick up an infection with such a compromised immune system.
I can remember standing up in her surgery and asking whether she was speaking to me or someone else – it didn’t feel real. I asked her what are we dealing with, only to be told that I may have leukaemia and may need to undergo chemotherapy.
I am not sure what I thought at this point. All I knew was that I had to be strong to get through this. I also knew my husband would undoubtedly crumble when I told him. While I packed my bags, my husband was beside himself and all I could say was, “the sooner we get this show on the road the better,” still not realising what may lie ahead.
At the hospital I was asked so many questions and more blood samples and x-rays were taken. I was very scared but could not let others see it. I kept reminding myself that nothing had been confirmed yet.
The day after all of this, I had a bone marrow sample taken which was more uncomfortable than painful. The following day, the bone marrow results confirmed I had AML and I would have to have three courses of chemotherapy. I wanted to ask my consultant so many questions but my main one was, “what is the survival rate?” I needed to know what I was fighting. She told me it was good which gave me a much-needed boost.
A few days passed and I had my Hickman line put in ready for my chemotherapy which was to start that evening. In total, I had nine days of chemo. It was tough but I am a firm believer that you have to be positive and fight these things head on. I was not sick at all, just a bit tired and didn’t feel like eating the day after I had daunorubicin, but by the evening I was feeling better.
I was asked to join the AML17 clinical trial. I obliged as I thought if it didn’t help me, it could help someone else in the long term.
I did lose my hair and had a wig which I hated. I liked my bald head and as far as I was concerned it was my badge of honour. I didn’t feel the need for scarves but sometimes liked to wear a trilby. My husband always said I looked like a woman on a mission when I wore it!
A month later, I was told my blood cell counts were high enough to go home. I have never packed so quickly; it felt so good to be going home. I had an appointment the following week to see my consultant. My husband came with me and we were totally shocked to be told I was in remission. I cried with tears of happiness as I didn’t realise that I could be in remission after only one course of chemo. On the down side I was going to be admitted back into hospital the following week to start the second eight-day course of treatment. Going back was made a lot easier due to the lovely staff on the ward which had become like family.
Once again, I didn’t experience any sickness, but did itch a lot and my feet started to peel. I then had four weeks at home to rest and for my body to recover. Course three was a six-day course and, once again, all went well and I was still in remission.
As I had signed up to the AML17 trial, I was randomised to have a forth course of chemo which I could have said no to. But as I had been so lucky through the previous three courses, what did I have to lose? I finished my chemo on October 1st 2011 – another poignant date for me.
Nearly four years on and I am still in remission. I just have a blood test and a visit to my consultant every six months, which I am hoping will become yearly soon. I was very lucky as I didn’t feel ill throughout my treatment. I really do think you have to be positive when faced with adversity, although this isn’t always as easy as it sounds when you are facing something like blood cancer.
I found the support of family and friends was a huge help, coupled with the comradeship of another brave lady who was going through the same as me. We quickly became known as the terrible twins on the ward as we laughed and misbehaved through our journey together. The impact a cancer diagnosis can have on your partner is huge. My husband felt helpless and didn’t have anyone to talk to about what he was going through, but all the while, was trying to be positive for me. This is why I am trying to get my local hospital to start a support group as I think support for the whole family, not just the patient, is so important during testing times.
Amanda Menage 2021 update
Since finishing my chemo for acute myeloid leukaemia (AML) back in 2011, life has returned to normal. I finished my treatment in October 2011 and enjoyed being back home with weekly check-ups at the hospital and the occasional blood transfusion. I had a couple of short stays back in hospital with infections, which I consider par for the course, but my consultant agreed this was due to my Hickman line still being in and not being used.
February 2012, I went back to work full time and loved being with people again. I also enjoyed booking holidays and the first one with the backing of my consultant was a flight to California to visit our daughter, which was wonderful.
Since then, my health has been good – no hiccups, and this year I am celebrating my 10th year in remission. I really don’t know where that time has gone. I am now retired and living life to the full, having recently been signed off from the hospital at my final yearly check-up.
These days, I think doctors are more aware of the signs of leukaemia. It took a couple of months for my AML to be diagnosed. For someone who does not visit the surgery unless necessary, I had many visits during this period, and it wasn’t until I asked about having a blood test that I was diagnosed.
I really had no idea about leukaemia until I was diagnosed. Do not hesitate to contact your GP; it could save your life. Listen to your own body – you know if something is not right.