It all started when I came back from a trip to Amsterdam and a massive bruise appeared on my thigh. It was so large I ended up calling it Barry. After a couple of weeks it was still there, so I arranged a telephone appointment with my GP. I was asked to send a picture of the bruise and remember having to sneak away from my desk and find a meeting room so I could pull down my trousers and take a snap! The GP said it was nothing to worry about, but a week later I had more and more bruises popping up on my legs. They weren’t like normal bruises: they were very round, dark around the edges, but solid white in the middle and hard to touch. I went back to my GP (in person this time) and asked him to look, at which point he referred me for blood tests. Funnily enough I asked him if it looked like leukaemia because I knew unexplained bruises could be a sign, but he said no. Aside from the bruising, I had no other symptoms. I hadn’t lost any weight (sadly) and wasn’t unusually tired… Apart from stressing about what could be causing the bruising, I felt fine.
I had my blood tests on a Tuesday and at 5am on Thursday, I was woken by an out of hours doctor from my local hospital. He told me my white cell count was extremely high and he’d been dispatched to check on me. He took some observations, then sent me to the hospital. Once there, I had more blood tests and at about 10am a lovely doctor came and told me that someone out there was looking out for me: although it was bad news, it could be a lot worse. She told me I had CML and had likely had it for a year. I immediately had a bone marrow biopsy and the rest is history.
The day I was diagnosed was weird, but I imagine that would be the same for all of us. I should explain that I’m a little bit of a hypochondriac and a worst-case scenario one at that! Even before I’d had my blood taken, on some level I’d convinced myself I had leukaemia and was mentally planning the songs I wanted at my funeral… It’s fair to say I have a flair for the dramatic. The upshot of me believing this though was that when the doctor told me I had leukaemia, and after reassuring me at least 100 times that I wasn’t dying, I felt a profound sense of relief. Yes, I had cancer and that sucked, but at least I knew I wasn’t dying. Knowing what you’re facing is much less terrifying than facing the unknown, at least to me.
The hospital kept me overnight as they wanted to start me on Hydroxycarbamide and keep an eye on me, so I made the questionable decision to call my nearest and dearest and tell them about my diagnosis. In hindsight, it was probably not the best news to break over the phone, but I must confess that by this point I was a little blasé about the whole thing. My attitude was that the doctor had told me I wasn’t dying, so what was there to worry about?
My blasé attitude lasted for about a week until I attended my first review at the hospital. The haematology department is based in the Day Therapy Unit, so when I went in, the first thing I saw was the patients hooked up to IV Chemo. At that point reality hit: I was in this part of the hospital because I had cancer. That was the start of my existential crisis. Around family and friends, it was all false bravado as I laughed, joked, and agreed that cancer had picked on the wrong woman. But the second I was alone, I’d sit around and cry, cuddling the cat. I was the most scared I had ever been in my life and didn’t know how to even start processing it. I knew there was support available to cancer patients to help them come to terms with their diagnosis, but I didn’t believe that support applied to me because I didn’t feel like a cancer patient. My treatment was one pill a day, I didn’t have to go through IV Chemo, I wasn’t likely to lose my hair and the side effects from my medication were minimal. Most days I felt normal. People say the Cancer Club is one which no one wants to join, and I felt as if membership had been fraudulently thrust upon me. My friends and family were all wonderful, but their support made me feel worse as I didn’t feel I deserved it, which in turn made me feel guilty about getting it, and that along with all my very real cancer-related fears and anxieties started to take a massive toll on my mental health. I can only describe it as ‘cancer diagnosis survivors guilt’. It took a long time to persuade myself that it was okay to ask for support.
I discovered that Leukaemia Care offered a buddy scheme, so I reached out and requested a buddy. I needed reassurance that it was okay to keep my hair, keep my job and continue to live my life, but still be part of the Cancer Club and terrified about what that meant. The most important thing I learned was that everyone’s cancer journey and experience is unique, the fact I’ve been “lucky” with my diagnosis and lack of side effects doesn’t make me any less deserving of support. Thanks to my buddy’s confirmation that it was okay to feel okay, I started looking at other support available, because it was okay for me to make use of it.
Over the next few weeks I signed myself up for a variety of courses ranging from Managing Fatigue to Coping with Worries and Anxieties. I did a lot of self-help, but there was still that little niggle at the back of my mind that I just couldn’t shake, which is when I decided to make use of the available funding through Leukaemia Care for some counselling sessions. I found a counsellor with a specialisation in cancer support, and over six sessions talked a lot about the things I feared, the guilt I was still carrying and all my worries for the future… He was very kind, offering tools and exercises to help me along the way, and he backed up the advice of my buddy: your journey is unique, so lean into it and accept it for what it is.
I eventually accepted that I don’t have to like leukaemia to live with it. This shift in perspective helped me massively, and from then on I decided to have fun with it! My friends and family know me well, and we’re now at the point where if I try to play the cancer card, they laugh at me and roll their eyes – I laugh too. It’s no longer something I’m scared to talk about because I’m living with it – it’s something we laugh at as I use it to try to get a free upgrade on a flight or a discount on a holiday… Because why not? Leukaemia is the card that life dealt me, so I’m going to play it! I absolutely appreciate that this may not be everyone’s way of handling their diagnosis, but you have to find a way which works for you, and whilst I’m aware that at some point things may take a turn for the worse and get a bit scary, I’m determined to have a bit of fun and make the most of it for as long as I can.
A year on and you wouldn’t know there was anything wrong with me. I’m still on treatment and my last BCR-ABL has me down to 1.7%, I started at 58%. It’s not going down as quickly as I’d hoped, but the main thing is it’s going down and I consider that a win! I’ve realised your average person, me included, views cancer as a gruelling and horrific experience, but it’s important for people to know that’s not always true. I’m not saying it’s a picnic because it absolutely isn’t, but at the start of your journey, you have to have hope that you could still live a full life someday. I consider myself to be living with cancer – I work full time, go on holiday, travel, get drunk and dance at weddings. I live my life more or less the same way as I did before. Granted, I take more naps than I used to and I take it easy in the mornings as I can get nauseous, so I’ve built my routine around that. I’ve now put myself forward for the buddy programme. I understand the fears, anxieties and how lonely it is to believe you’re the only person in the world who feels the way you do. I’m at a point in my own journey where I’m happy, I recognise I had so much help to get me to where I am – now I just want to give back.
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