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About six months before diagnosis I felt unusually tired. However, I put this down to going to the pub a bit too much with friends whilst working and studying, so I didn’t feel the need to go to the GP, but in the back of my mind I did feel something wasn’t right.
However, I ended up visiting the GP surgery and saw a nurse practitioner because I had a cold that had lasted a couple of weeks. This was unusual for me, and it was thought it had caused an enlarged gland on one side of my neck, which was the reason I was sent for a blood test as a precaution. It turned out it wasn’t enlarged from the cold.
I was called two days after my blood test to come to the GP surgery. They didn’t make me an appointment, they just told me to sit and wait. I wasn’t told to bring anyone with me, so I wasn’t that worried. After waiting for what felt like a lifetime (it was about an hour), the GP explained that she had been in touch with the haematology department at my local hospital and they believed that I had this treatable form of cancer called chronic myeloid leukaemia (CML), but this couldn’t be confirmed until I had a bone marrow biopsy at the hospital.
Originally, I was treated at my local hospital. Because this is typically an old man’s disease and I was a young woman with it, I felt like the treatment was aimed at older men and the doctors didn’t know how to deal with me as a young person properly and on a personable level. I was also struggling with the side effects of my drugs, but they would always brush anything other than sickness and diarrhoea under the carpet as other problems, and one even implied I was making it up.
While I was suffering with these awful side effects, I was sleeping for up to 16 hours a day. A doctor came to me and said, “It’s the best type of cancer you could get, so you shouldn’t complain.” This did not go down well as I felt so poorly all the time.
I used to see different doctors at every visit and would get variable information from every doctor I saw. So, after three months, I decided to move to the Royal Marsden Hospital. The care from my consultant has been outstanding and I feel that I am listened to and treated like a human, and I am now also given choices in my care and treatment to a degree which I am so grateful for.
To start with, I was on a casual contract at work so I could choose when I worked. This did impact my finances, but luckily I lived at home, so I didn’t need to worry too much. However, after a couple of years once my side effects eased, I secured a permanent contract working four days a week. I usually have a Wednesday off to recharge for the rest of the week, because I do still get a bit tired. Being on treatment definitely doesn’t make working easy as I am pretty forgetful and I rely on my colleagues to remind me of processes that I have been doing for the last 10 years. Luckily, they are all very understanding. I’ve tried to keep a positive outlook for my mental health’s sake. At times, when I have had bad news about my health, I have felt really down but I let myself wallow for a few days, pick myself up and dust myself down. I do try and keep life as normal as possible. I go to gigs, go to the pub and live life because what’s the point of going through treatment every day of your life to not live?
I am currently completely negative, which means I have no cancer cells detectable in my blood. I am always going to be on treatment. A few years ago, under the watchful eye of my consultant, I tried to come off the drugs to see what would happen if I tried going treatment-free, but unfortunately, this didn’t work for me and it probably never will. I take a miracle drug called imatinib at a lower dose than normal because it has always given me bad side effects. Even at a lower dose, it does still cause me a few mild side effects such as water retention and memory problems, but it’s easier to deal with now.
Thanks to the nurse practitioner I was diagnosed pretty early. I had to go and see her for a check-up a few months after and she said how shocked they all were at my diagnosis, but they were pleased it was caught early. Spot Leukaemia is important because it teaches people to be more aware of their bodies and healthcare professionals to be more aware of the signs to look out for in their patients. It also means more people like me get an early diagnosis and therefore early treatment.