I was diagnosed with chronic myeloid leukaemia (CML) on 19th August 2015, which came after two months of feeling generally unwell and having a number of signs and symptoms commonly associated with blood cancer. I started feeling extremely tired at late afternoon, not just the tired feeling many of us get when you’ve had a long day at work, but a fatigued feeling to the point where I just needed to sleep. I was a very active person due to my job as a soldier in the British Army, so it was quite easy to spot that something was wrong.
There were a couple of occasions where I woke up in the middle of the night drenched with sweat, feeling like I was in a sauna and I would also get cramp in my calves; the pain would wake me. My fitness was also affected and I was finding any type of exercise difficult. Whilst playing in competitive football matches I wasn’t able to last more than 15 minutes in each game without needing to sit down as I was bright red, breathless and cramping. I also noticed a change in my weight and I lost my appetite. I later learned that this was caused by my enlarged spleen which was pressing on my stomach. This prompted a close friend of mine who I worked and exercised with to book me a doctor’s appointment to have a check up.
I was booked in for a blood test the next morning. While I waited for the nurse to take my blood I wasn’t nervous as I thought it was just a routine check. I even asked the nurse as she jabbed me, ‘How does my blood look?’ She ironically replied with ‘all fine.’ Later that afternoon, when I was called back to see the doctor again for my results, it was not fine at all.
I was told that there was an abnormal white blood count which they suspected to be caused by leukaemia. Needless to say, I was shocked, I didn’t even know what leukaemia was. I asked if it was the big C, to which the doctor replied, ‘I’m afraid it is.’ All the arrangements had been made for me to see a specialist consultant the next day. I left the office to be greeted by my friend who was outside waiting for me where I collapsed in a fit of tears.
I then made one of the hardest calls I have ever had to make and that was to my now ex-wife. My friend had advised me to wait to make the call as he didn’t want me to make the call in the state I was in, so I waited until I had calmed down. I am so thankful for what my friend did that evening and for the friendship and support he has given all of us during these hard few months, a true friend for life.
After meeting the specialist the next day, I was in shock, just staring into nothing. I was then taken into a different room and I had some bone marrow extracted from my pelvic bone, a procedure that I would never volunteer to have, but I understand it has to be done.
A week later I was back at the hospital to arrange what treatment I would need. I was given all the information on the two medications available and had a further week to decide which was the one for me. This was because I had to make a visit to a fertility clinic, which was very daunting. As I am a young adult, and there is a risk of becoming infertile due to the medication, I was advised to freeze some of my sperm for the future, as myself and Vicki were still indecisive to whether we would want more children. I started taking nilotinib and I have responded very well, hitting all the key markers with very little side effects.
My ex-wife was very upset at the beginning but since my diagnosis she has been very strong for my sake. She has been there through all my ups and downs giving me her shoulder to cry on or just listening to me when I needed to rant, ‘why me?’
Thankfully my children are still too young to fully understand what is happening with their daddy. My mum and my sister both found the news very hard to digest, but all of my close family and friends have supported me and I am forever thankful.
Since my diagnosis I have been at home on sick leave. I have been in the army since I left school at 16-years-old and it’s all I have known; so now it was time to move on and to start my new life as a civilian living with CML. At the moment I am feeling very fit and healthy.
I knew when I started feeling a little better that I wanted to do some work for a blood cancer charity, an event to fundraise, to create awareness and to show people that your life can be as normal as possible living with blood cancer.
Daniel shared his diagnosis story in 2016 and now shares an update:
“I have been medically discharged from the Army and now work as a Mental Health Support Worker in the NHS. I remain on the same medication and treatment plan but have recently been told that due to having a long period in molecular remission, I will start the de-escalation process of my medication in July this year. This will mean I will be lowering my dose whilst being monitored with monthly blood tests with the aim to stop medication altogether, which is very exciting having been on this medication since 2015. I do have a worry that thus may not be successful but feel confident that my medical team will be able to monitor this closely.”
Fundraising
Daniel first ran the London Marathon on behalf of Leukaemia Care in 2016 and is running again this year.
“I ran the 2016 London Marathon for three main reasons. The first was to show myself that I could do arduous things even with my diagnosis; I personally see the marathon as a big challenge as I am not a massive fan of running but I liked the idea of overcoming this massive challenge. The second was to raise money for LC in some way to say thank you for the support I received early in my diagnosis and continue to receive. The third reason was that it was a personal bucket list challenge I wanted to do in my life and my diagnosis of CML kicked me into doing things or trying things that I wanted to.
The reason I wanted to run the London Marathon again was that I wanted to raise money for charity and also challenge myself again and I know that the experience and whole process of the London Marathon from start to finish is amazing, but at times challenging and very tough not only physically but mentally. I wanted to experience this again. I will also share this whole journey with my partner Emily who is also running alongside me. We aim to train, fundraise, and run the marathon together. This will be her first-ever marathon and I cannot wait to do this with her alongside me.
I have a personal connection with LC so it was no brainer that I would do it on behalf of the charity again. The support during training and fundraising is brilliant always there to answer any questions and offer advice. I also get help with any aids to help with my fundraising like collection tins to banners and t-shirts for events. During the marathon, the ‘cheer squads’ also keep you going and the team at the end of the marathon offer a place to relax and recover but also is nice to have a place to meet the other runners and the LC team.
To those who are unsure about running a marathon – if you have that feeling go with it. The marathon is a massive achievement for anyone from a professional runner to a complete novice. The feeling when you complete the marathon is amazing and quite difficult to describe. I won’t lie the training is very hard and sometimes during the longer runs you may feel like stopping or having thoughts of quitting but trust me when I say this stick with it, and you will enjoy every moment of the day from start to finish.”
Fancy running a marathon?
We still have plenty of opportunities for you to run with us and join #TeamLC this year! Our fundraising team will be on hand to guide and support you through your fundraising journey, whether you’re a complete beginner, or a #TeamLC veteran.
Email our fundraising team and they can help pick the marathon best for you! Contact them at fundraising@leukaemiacare.org.uk.
Maybe a marathon isn’t for you but you want to be there cheering on #TeamLC along the way? Don’t worry, we have plenty of opportunities for you to be a part of one of our cheer squads. Email our Volunteer Coordinator Zoe at zoe.collins@leukaemiacare.org.uk for more information.
Do you know what the six most common signs and symptoms of leukaemia are? They are:
- Fatigue
- Shortness of breath
- Fever or night sweats
- Bruising or bleeding
- Bone/joint pain
- Repeated infections
Are you currently experiencing any of these signs and symptoms? If so, contact your GP and ask for a blood test.
For more information on our Spot Leukaemia campaign, our goal and how to get involved, head over to our official Spot Leukaemia website at www.spotleukaemia.org.uk
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