Sarah D
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My first blog a year a go

Sarah D
Posted by
14 Oct 2014

I had just started my second year at University and was very happy but I just didn’t feel very well and could not put my finger on what it was. I was tired all the time and was getting headaches every day, I just didn’t feel myself. I was working at Ikea part time, at the same time as being at university and was loving every minute of that too, as I had made so many friends. I started going to the doctors as I knew something wasn’t right, but I got told that I was stressed because of university, 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.

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. Me and my Mum thought nothing of it really, just thought she was going to tell me I had anaemia and needed iron tablets to make me feel better again. I went to the doctors to meet Dr Miller where she told me 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. After getting off the phone to a friend at work I realised maybe it wasn’t really sinking in with me so I asked Dr Miller if she would come to my house to talk to my parents as I was the last appointment she had that day, she happily agreed and said she would see me in half an hour.

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. I remember going to work days after and everyone being extremely supportive and deeply worried about me as my friends had let people know the news. At times it was tough as some people struggled to talk to me as they didn’t know what to say, that was something I had never experienced before.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? Worst mistake I made back then was researching the illness on the internet, reading that I may live between 3-5 years made me feel sick and so angry about what may be happening to me.

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?

Beginning treatment

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.

On bonfire night in 2003 I got told that I had Chronic Myeloid Leukaemia, 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 sort a relief to finally know what had been wrong with me for so long and that it was in the early stages. Most people have a white blood cell count of 4-11, mine was in the 100s. My family and friends were so amazing, but it was hard for me to see them upset because of me. The thought of having CML did scare me but having so much support around me helped me through the bad days. Don’t think of me as vain, but I was massively worried about losing my hair and my eyelashes, I even joked to my dad that I should insure my eyelashes as they are my best feature ;-) ! Luckily I’ve never I had to experience full hair loss! :-)

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.

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!!  When I was younger I used to be a bit of a drama queen and when I felt ill I said I felt like I was dying, I didn’t really feel that way I just liked to be dramatic for a laugh.  I started to think that maybe it was Karma for my overreactions that had brought this on me. I just needed to blame something or try to explain why this had happened. Obviously I would never find an answer, unfortunately it just happens!

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. My best friend Kirsty was my rock when I couldn’t hold the feelings inside anymore. She just sat and listened and made me laugh. I would have told my parents how I felt but I didn’t want them to worry because I loved them so much and hated so see them hurt, so Kirsty was my shoulder to cry on.

Switching treatments

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

My whole journey has now spanned 10 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 best friend, my parents or a complete stranger!   When people think of leukaemia they think the absolute worst, 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!!!  Some people don’t even believe me when I tell them I have it because I look so healthy.

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.



Hi Sarah,

Thanks so much for sharing your experiences with CML as a blog as well as a patient story. You're a real inspiration to others going through treatment and the more people that are able to read your story the better!

I hope you're well and am still jealous about you meeting Rocky! 


Hi Sarah, My 19 year old daughter has recently been diagnosed with CML. She is in her second year at university studying ( ironically) bio medical science! She is on Glivec and although early days, is responding well so far. It's been a very traumatic time for us but reading your post is very reassuring for me (her mother) and has helped to put my mind at rest. Thank you.