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I’d just started my second year at University, I was tired all the time and was getting headaches every day, I just didn’t feel myself but couldn’t put my finger on it. I was working at Ikea part time, as well as being at university and was loving every minute of it. I went to the doctors as I knew something wasn’t right, but I got told that I was probably stressed or maybe I was burning the candle at both ends. I certainly wasn’t. Whilst my friends were going out after a day of studying I was too tired and struggling with headaches or I was working.
It took a year for a doctor to finally give me a blood test after numerous visits. Within 24 hours I was called back to the doctors. I went on my break at work, only to be told that I had leukaemia. To be honest I was numb so didn’t react, apart from asking to use her phone to call work to say I wouldn’t be back. The doctor was our family doctor so I asked her to come to my parents’ house to talk to them as I was her last appointment. She happily obliged.
I called my parents to say I was on my way home thinking they would be there, unfortunately they were out shopping. I will never forget the moment I told my Mum that she needed to go home straight away as Dr. Miller was coming by to talk to them. She told my dad and the panic in her voice shocked me. At that point I had not said anything about my diagnosis and I was perfectly calm when I spoke to her. I guess it’s true what people say, mums just know when something is wrong.
I got home and minutes later both my parents and Dr. Miller arrived. We sat in the living room together as my parents heard the news that I had leukaemia. All three of them were so emotional, I practically had to comfort them. The most upsetting thing for me was seeing my parents so visibly distraught.
Within the week I had my first hospital appointment where we discussed what it would mean having leukaemia and what the next steps were. About a week after I was back at the hospital for a bone marrow test. Now I’m not going to lie, this is not a nice experience but obviously vital to reach a confirmed diagnosis. After the procedure I got told I had to wait a while for the results to come back. I suppose that’s the hard part for people, just waiting to find out how bad the illness was.
On Bonfire Night in 2003 I was told that I had chronic myeloid leukaemia (CML), the news didn’t come as a shock as we already knew I had leukaemia, just not to what extent it had developed. It was a relief to finally know what had been wrong with me for so long and that it was in the early stages.
I was in and out of the hospital every week for tests and talks with my consultant. I was told that I would be put on a trial drug called imatinib (Glivec®) and I would be put on the bone marrow register. They asked if my brother would be willing to have a blood test to see if he was a match for me. Obviously he happily agreed to this but unfortunately he wasn’t a match; which I think upset him more than me as he couldn’t do anything to help me.
Although at times I felt a bit poorly taking my new tablets, I can honestly say that things weren’t that bad. I did everything a normal 19-year-old would do; going out with friends, going to university and I continued working. The big upset in my life was putting my parents through so much; it was hard to see the sadness in their eyes, knowing that I had caused that. I tried to stay positive in front of my family, but inside at times I was so completely mad that this had happened to me.
In time, my body adjusted well to my medication and after more bone marrow tests it showed that the leukaemia-positive cells were reducing. My anger at my illness gradually subsided. I realised that things just happen and by no means was my situation that bad compared to others. Being upset or angry didn’t help me or my family. I think at the beginning I did bottle my feelings up too much, trying to stay strong for everyone else.
Life went on as normal and my attitude to the illness was much better, until late 2006 when I was told that I was no longer responding to imatinib. But because of all the new drugs that are continually being developed, my consultant didn’t believe it would be a problem and I was put on a new wonder drug, dasatinib (Sprycel®).
I was, and am, so lucky that at the time of my diagnosis all these drugs were being created and still are being created. Again, my body had to adjust to the new tablets, which took a bit of time, but yet again I achieved a complete cytogenetic response (CCR).
In 2007 my consultant shared the news that I had achieved a major molecular response (MMR) to dasatinib, which was amazing news. I was over the moon and so were my family. Three and a half years later and I had achieved an awesome result, I am so lucky. Since then I have remained in a MMR and my BCR-ABL ratio is currently 0.001% which is absolutely fantastic.
My whole journey has now spanned 11 years but I can honestly say hand over heart that it has been a good one. I have learnt a lot about myself, it has changed me, and I hope my friends and family would agree it’s for the better. I’ve had my ups and downs but someone has always been there to listen and support me, whether that being my friends, my parents or a complete stranger! Some people don’t even believe me when I tell them I have it because I look so healthy. When people think of leukaemia they think the absolute worst but I’m proud to say to people that I have leukaemia so that they can see that you can lead a normal life and enjoy it, I certainly enjoy mine.