Dan’s Story

Talk to us about your diagnosis and how Cure Leukaemia has supported you? 

It was early in 2017 and I was struck down by a nasty bout of shingles which was painful and led to a lump in my neck forming. After a visit to the GP I received medication and I thought that was the end of the matter. I could not have been more wrong and it started a sequence of GP visits, tests, scans and more tests over the next 3 months as the lump in my neck did not disappear and gradually grew larger. Eventually a biopsy was taken and I carried on with my every day life oblivious to the fact that my world was about to come crashing down.

After further scans I learnt that I had been diagnosed with leukaemia (CLL)  which was scary to say the least. What did it all mean and when would I start treatment? That is when it got even more confusing as I was told that I would not need treatment and that I would be placed on ‘Watch and wait’

This led to anxiety and worry that I had never experienced previously and every cough or cold led me to believe that something far more dangerous was lurking. Regular check- ups and consultations with the medical team became the norm and I used to live by waiting for the results and hoping that they would be positive and that I would not need further treatment

Frustratingly my general health gradually suffered and I experienced a number of bouts of tonsillitis and quinsy which eventually led to my tonsils being removed (this was not much fun I can tell you!) and led to me finding that tiredness and fatigue became a regular foe. I couldn’t afford to take time off work so I continued to plough on and do my best. Some days I felt good and others I didn’t and I just had to learn that this was the reality of living with CLL

Life started becoming busier when I became a dad for the first time in August 2019 and then the stresses and strains of COVID put a stop to life as we knew it in 2020 and the long periods of isolation were tough knowing that a weakened immune system made me more vulnerable and that I had to stay safe.

It was a huge relief to eventually see life return to something that felt more like normal but I had noticed that the periods of fatigue were increasingly tough and that my lymph nodes were starting to increase in size and especially in my neck. Tests with the consultant became more frequent and they told me that it was now the right time to begin treatment. It had been 5 years since diagnosis but now it was time to do what I had wanted to do from the start – fight back from this illness.

I was told about the fantastic work that the Cure Leukaemia research nurses had been doing and was given advice on the best forms of treatment. I finally decided that I wanted to take the Venetoclax and Obintuzomab option and was booked in to start at the Heath Hospital a week later. On arrival at the hospital the nurses were excellent and put my nerves at ease. For 3 months I made almost daily visits and it became like home and the nurses were very much like family by the time that I walked out after the initial phase. A year later I finished my medication and it has been amazing to see the results. My lymph nodes decreased in size almost immediately and I now have the energy back to play with my daughter and to enjoy running and cycling again.

I am proud to know that Wales (Cardiff) has a blood cancer centre and that it is being led by Emma Williams and her dedicated team of research nurses who will no doubt make every effort to find new ways of treating patients for many years to come.