I was in and out of the doctors for nearly a year before I actually got to see my family doctor, Dr Miller, (she had been there for both mine and my brother’s births), she was so popular and head of the surgery, she was so busy and to be honest I never thought it was that serious I had to request to see her! As soon as she saw me she thought I may be anaemic so took a blood test then and there. Back then I was petrified of needles, so this freaked me out (obviously I have no issues with them now (-: ).
The next day whilst I was working a late shift at Ikea I got a call from my Mum saying Dr Miller had called and wanted to see me that evening.
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. I just heard her take the phone away from her and tell my Dad that they needed to go home straight away. The panic in her voice shocked me as at that point as I had not said anything about what had been discussed and I was perfectly calm when I spoke to her. That is one memory that will never leave me, EVER!! But I guess it’s true what people say, Mums just know when something is wrong!!
I got home and minutes late both my parents and Dr Miller arrived. We sat in the living room together as my parents heard the news from Dr Miller that I had leukaemia. All three of them got so emotional, I practically had to comfort them. The most upsetting thing for me was seeing my parents so visibly distraught.After this point most things seem a bit of a blur to be honest.
Of course every minute of my day was taken up with thinking about what will happen to me now I had leukaemia. Will I see my 21st birthday, will I have kids, some sites on the internet said not?
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 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.
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 Glivec (imatinib) 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, unfortunately he wasn’t a match which I think upset him more than me as he couldn’t do anything to help me.
In time my body adjusted well to my new medication and after more bone marrow tests it showed that the leukaemia positive cells were reducing. Due to the good response I was having from the drugs which had put me in a complete cytogenetic response, I was sent to have a stem cell harvest to collect my cells in case I had a relapse. This isn’t a painful procedure, more boring to be honest. Because I had tubes coming out of the veins in both my arms I couldn’t move at all, for me that was extremely annoying as I like to move about, luckily I was only in for a day having to endure rubbish day time TV :-)
My anger at my illness went away for most parts, 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 friends and 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 Glivec as I had Philadelphia chromosome positive CML which means that patients do become resistant to Glivec. 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.
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.
In 2007 my consultant happily shared the news that I had achieved a Major Molecular response 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 0.0006% which is absolutely fantastic.
Coming to terms with having CML
You may think it’s strange for me to say this, but I am so lucky to have been diagnosed with CML. I know it’s not good to be diagnosed with Leukaemia but CML is the best one you can possibly get. I am a much stronger person due to the journey I have been through. My only regret in all of this is putting my family through such hard times, but I believe the hard times are over for me and them now.
I would honestly like to thank the NHS as I have experienced them at their best. I especially want to thank all the Nurses, specialists and consultants at the Cavell unit at Dewsbury hospital, they have been amazing throughout and I have made a few friends along the way. I also need to thank my best friend Kirsty for being there for me no matter what, even when I was a miserable person :-). I want to thank my brother too for the support he has shown, even if it’s behind the scenes, I love him dearly. The picture above shows me and my brother at my mum's 60th birthday party, October 2013.
The biggest thanks goes to my parents, they mean the world to me and I cannot thank them enough for everything that they have done for me or the love they have given to me, I love them more than words can say.