Rebecca  W.
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My Journey with Chronic Myeloid leukaemia

Rebecca  W.
Posted by
27 Aug 2016

My life With living with CML

On the 26th of June 2004 just over a month short of my 17th birthday I was given the news that I had CML. That year had started pretty much like any other I was enrolled in college, had met lots of new friends, had just became an auntie for the first time and was just enjoying being a teenager. The symptoms of CML crept up on me slowly it began with being exhausted I would get up do my day at college if I could get myself there that was and by the time it was time to go home I was ready to sleep for hours. Then came the bruising I just kept noticing huge bruises appearing on my body but as I’m clumsy I just brushed that off. In time I began noticing my stomach was hard and swollen (which I later learnt was my enlarged spleen). One morning I just couldn’t get myself out of bed because I was so dizzy I just couldn’t stand. That’s when my parents rushed me to A&E and we got the dreaded news. At the time I was diagnosed I really didn’t take it in what I had just been told I think it was all a big shock and slightly unbelievable even when I was being blue lighted all the way from my home town to Nottingham City hospital. I spent 2 weeks in hospital taking chemo tablets and just getting my blood levels back under some sort of control. I was very lucky in the fact that I didn’t have to go through the full on chemo, radiation or a bone marrow transplant but I had been found a match just in case. I left hospital and was put on some medication called Glivec for all its side effects to me this is a miracle drug it gave me another chance at life. Now don’t get me wrong in the beginning the symptoms of the drugs were hard to live with the nausea and fatigue were the worst but after a while I sort of just got use to these things they became daily life and I started getting back on my feet. Being a teenager and trying to navigate through all of the teenage problems with that on top was difficult but looking back I had a great support system of friends and family. I started enjoying nights out (even though it would take me days to get over the fatigue) I went on girls holidays, finished college I wasn’t going to let this stop me I was adamant of that. Dating was always a scary thing for me because of having to tell someone you have blood cancer is so scary because of the fear of being judged or them running a mile and that was a real thing I had to be prepared for. 12 years later I am happily married to a man that never judged me and just took it in his stride and loved me for me. I’ve learnt the right person for you will always stick by you no matter what. Today my health is pretty good and my consultant brought up the idea of trying for a baby if I’d like I wasn’t sure if this was a possibility but he said it was but not many people had done it before I’m a bit of a guinea pig but I don’t mind that because this is another massive piece of luck on my part as I know many people who go through treatment don’t have the chance of this. To do this I had to change medication to one called Tasinga as it’s stronger and helps the level of cml be reduced even further in my body I’m currently at 0.006% which I couldn’t be happier with. The next step is to come off all medications and then after a month begin the trying. This is slightly risky as some peoples levels rise slowly while others are quite rapid I’m the latter but I know I’m in good hands so I’m not too worried. My husband and I have already given it ago twice but because of the speed my leukaemia multiples we don’t ever have to long to get the job done so to speak but all the specialists feel very positive it will happen for us we have just got to keep plodding along with little breaks on my medication in between. We are just about to gear up for attempt lucky number 3 so fingers crossed we get our little miracle baby but if that’s not on the cards for us I just need to look at how lucky I have been already I’m happy healthy and living life to is fullest!

Comments

Eleanor Baggley
31.08.2016

Thank you so much for sharing your experiences with us, Rebecca. It sounds like you've had a really difficult time, but haven't let your diagnosis get in the way of life at all! It's really interesting to hear about how you're trying for a baby and what your team are doing to support you with that - I think this will be particularly helpful for many others in a similar situation. I wish you all the best. If there's ever anything we can do to support you, please do not hesitate to get in touch. Take care, Eleanor