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Anne's story

Where to begin

Everyone tells you start at the beginning when you are telling a story so I decided to share my story from when I was diagnosed with Chronic Lymphocytic Leukaemia (CLL).

Anne O'Neil

My illness was discovered by accident more than me noticing something was wrong. I had been admitted to hospital with gall bladder problems. When it came to having my gall bladder removed the surgeon was concerned about my high white cell count, despite my having had several courses of antibiotics. He made enquiries with a colleague and informed me that they suspected I had a form of leukaemia. I knew very little about the disease apart from knowing a friend who had been diagnosed years before and had thankfully, survived by having a bone marrow transplant. The only other information I knew about at the time was like most people, what I had read in newspapers or seen on the TV.

I very quickly decided that I needed to gain a much greater understanding of what I was dealing with and how this may affect me and my family in the future. I was 59 years old at this point and working full time so all of a sudden like many other people who face this type of news my life was looking very different from how I had perceived it the previous week.

On my first appointment after the diagnosis my consultant explained more about CLL and how it progressed differently in people and that I would go through a stage of watchful waiting. While I completely understood and was grateful that I didn't have a more severe type of leukaemia I found It difficult to get my head round the whole adjustment of living with it.

I decided I needed to know as much as I could about CLL and tried to read articles and gather information obviously reading articles on the internet can be scary and I often had to give myself a lecture on keeping a sensible head on my shoulders and keep some perspective in place. Not always easy!

As time went on I found that I did adjust and that by gaining the understanding of what I was dealing with helped me to deal with it in my own way. It is probably what we all do when faced with difficult times.

For several years I attended clinic as an outpatient, usually every eight to twelve weeks depending on my blood test results. I very quickly became aware of how many other people were dealing with blood disorders, it is one of those things in life I think that is a bit off a reality check. Sometimes it would be good news white cells are down a bit, instant phone call to my family to share in my delight or bad news white cells have increased considerably so we may need to start treatment, instant phone calls to my family, disappointed it's not good news and treatment may have to start. In each case a glass of wine and a chat with my nearest and dearest as well as close friends helped me keep balance and a positive attitude.

I haven't said much about being positive but I think it has helped me enormously, I am naturally a person who has a glass half full. I think from day one of being diagnosed, I went through lots of emotions but came to the conclusion that the best way to use my energy would be in accepting my situation and doing all I could to prepare my mind and body to defend itself.

Hence I tried to eat a much healthier diet, retired from full time working, decreasing stress and started walking as much as possible.

I explored all the treatments that were available to me with my consultant and asked him if he knew of any clinical trials that would be suitable for me. This was over a period of about a year and we often talked about different trials but I was never in the right place to be an appropriate patient.

At one of my normal check ups my consultant told me about a clinical trial that was taking place at the Royal Bournemouth Hospital, we talked through the process and the implications of participating in a trial. I must admit I was very excited, I thought this would really suit me. I am constantly in awe of research and science, it is truly amazing to me how much progress has been made in my lifetime to combat diseases and to be part of something like this would be very rewarding no matter how small a part one plays.

You can imagine the phone call to the family after this appointment it was not so much how bad the disease had got but much more about the possibility of participating in a clinical trial.

My consultant referred me to Dr. Walewska and my initial appointment to meet her was eagerly awaited, I didn't have to wait long and promptly headed off to the Bournemouth hospital to hear more.

My husband came with me for this initial meeting as it was important to us that if I was to embark on this trial we would both need to be committed.

I will never forget that first meeting, I was instantly overwhelmed by the level of knowledge Dr. Walewska held and also her ability to connect with me, explaining everything in terms that I could understand. I don't think I have met many people in life let alone the medical world that have had such an impact on me. We discussed at length the Flair trial, what is involved, how the trial works and the implications.

I left the hospital that day armed with lots of information both written and verbal as well as a real sense of feeling heard and cared for. I think this is probably a good point to take a breather and will carry on to the next stage of my story soon, where I can tell you more about the ups and downs of joining the trial.

Thanks for reading