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My story is a bit different because I didn’t have any symptoms of acute myeloid leukaemia (AML). I appeared very well and healthy. I had gone to see my GP about something else totally unrelated to AML. It was nothing pressing, it was just something that had been on my mind for a while. My GP asked me to have a blood test done and it was from this that they happened to come across the leukaemia cells.
I had my blood test on the Monday morning. I was called back on the Monday evening, but I missed the call, so it was a voicemail. The voicemail gave no cause for concern and I’m sure if I remember correctly, the words “nothing to worry about” were used. I was simply asked to call back to make another blood test appointment as my blood counts were reading lower than normal but sometimes the machine doesn’t read properly.
The next morning before I left for work, the GP receptionist called me at home and asked if I could go in at 2pm. When I got to work, she called again to ask if could go in at 11am. This might sound crazy, but I wasn’t worried. I left my PC on at work, left my lunch in the fridge, told everyone I’d be back soon and off I went back to my GP surgery to be “re-tested”. Little did I know, I wouldn’t be back.
When the GP called me in, he looked behind me to see if I had someone with me and looked shocked that I didn’t. But I was led to believe I had nothing to worry about, so why would I? He sat me down and explained that my blood counts were lower than normal which was flagged as a concern, which then made them look at the sample further, only to find what looked like leukaemia cells. He was almost certain that it was AML but needed it to be confirmed with further testing. He was great and explained what would happen when I was sent over to the hospital straight after. I didn’t cry, but was probably in shock. There was a bit of apprehension at that point as well due to the fact that my family and I had just watched a very close family member pass away with AML six weeks prior. Even though it’s not hereditary, instantly, that was my initial thought and I feared the worst. But still to this day, we believe she was looking down on me and made sure that I was going to be okay.
At the hospital, I had loads of blood samples taken and the dreaded bone marrow biopsy; probably the worst pain I have ever experienced. If I hadn’t gone for that blood test, my story would have been completely different. I would have started to feel tired, noticed bruising, been quite pale, been out of breath and developed frequent infections. I had none of these when diagnosed because the AML was detected very early on, and by chance! I think that this highlights the importance of going to your GP when you feel concerned about anything.
I can probably count on both hands how many days I was unwell. There was only one day that I didn’t get out of bed to do my hair (before it all fell out of course).
Looking at the best bits to begin with:
Not having to do your hair every day is a bonus! The NHS funded a top hairdresser to visit me in hospital. He provided a wig for me and cut it to suit my face. I loved it so much that I bought one myself as they do start to get a bit tatty after a while. I wore a wig for almost two years.
Not having to cook and clean is also a bonus! I didn’t enjoy hospital food at all. I took in my own cereal and had family and friends bring me in lunch every day. My partner brought my dinner in at night, with the odd takeaway brought in too. This made me feel like I wasn’t missing out on normal things.
I had lots of personal touches in my room, from photo boards to my own bedding. The whiteboard was vandalised by anyone who visited me too. My partner got to stay overnight with me and the nurses/auxiliaries were brilliant in setting up a bed for him. They even fed and watered him.
Seeing friends and family every day. We had a lot of good times, from birthday celebrations, palm readings (when I looked like a fortune teller with my bandana), learning card tricks and making Easter hats. I also made friends with staff and other patients.
I attended a session at the Maggies Centre called “Look Good, Feel Better”. It was a session for ladies going through chemotherapy where they might not have felt good about themselves due to their change in image (skin changes, hair falling out etc). It was held by a lady who works on a top beauty counter and we all received a free kit including makeup and perfume. It was such a nice thing to take part in and speak to other ladies going through the same.
And now for the not so good bits:
Chemotherapy, of course! I handled it well. There were very few bad days due to this. But it did come with side effects and downsides. I had to get my temperature and blood pressure checked every four hours, even through the night which would usually be when I would develop a temperature. This meant I had to have various tests done there and then, and was put straight on antibiotics. It also gave me bad heartburn once which meant I had to go on tablets for that. Don’t pick your spots when you have no immune system, or you might end up with Staf B and a massive infected swollen face resulting in two weeks solid IV antibiotics. It was not a pretty sight! I also had to come back into hospital after I was discharged due to my Hickman line being infected. My temperature was 39.9°C because of this. It had to be removed straight away, but luckily I was finished with it.
I think because you can’t “see” leukaemia, that’s probably why a lot of patients are told they look well. I was always told this and always told “you’d never know”. When people would visit me in hospital, they would say that I was a picture of health and that they were the ones coming in with bags under their eyes!
However, I was always very positive from the start. I went into treatment healthy. In fact, I think I was told I was the healthiest patient they’d had admitted. They didn’t have to treat any other illnesses before starting chemotherapy and I think that’s why I was so strong throughout. I never really lost my appetite either, so was always eating (maybe a bit too much!). My chances of remission were great due to factors such as my age, gender and a marker in my genes. And here I am to tell the tale.
I am in full remission. I was diagnosed on 27/03/14, and was in remission after round one of chemotherapy. After I received a further three rounds of chemotherapy, I was given the all clear on 24/11/14. I didn’t have to take any medication after treatment. I had to undergo a further two bone marrow tests and numerous blood tests. The blood tests started often but the frequency was spaced out as time went on. The longest gap I reached was six months. I also had to go for an ECG to check that there was no long-term damage to my heart after chemotherapy, which there wasn’t, so that was great to hear! I was fully discharged from Haematology in May 2019.
I would give some advice to anyone going through a diagnosis: don’t google! Only listen to your GP/consultant as they know best for your circumstances. And be positive. I like the fact that that’s my blood group too. It’s like it was a sign.
I really can’t complain about my diagnosis experience. The NHS did an amazing job at spotting the leukaemia when it wasn’t what they were initially looking for. I had my first blood test on the Monday, was called back in on the Tuesday for further testing, and had it confirmed on the Wednesday. I was then admitted and officially diagnosed on the Thursday. It all happened so quick and I can’t thank the NHS enough for that.
It’s important to know the symptoms that you might not necessarily see. Other cancers involve lumps, for example, which can be seen, so immediately you know there might be something wrong. If you start to feel or see things in yourself that aren’t normal to you, then they probably aren’t normal and you shouldn’t make excuses for them – speak to your GP!
