Ian’s Watch and Wait story

Ian has lived with Watch and Wait since 2012.

Spring 2012 and things were good. I had two years to go to retirement, the project I was working on should be finished by then, and I would also reach my target of 100 blood donations about that time too.

Then out of the blue something hit me; I felt dreadful and both my lips were covered in cold sores. My GP diagnosed a virus but thought a blood test was in order – quite routine!

A week or so later, I received a telephone call from my local hospital and was asked to attend a meeting with a haematologist to discuss my blood results. Confused and somewhat alarmed, I asked my younger daughter to attend with me for moral support and, being a nurse, may understand better what I was about to be told. We duly met the Haematology Consultant and I was informed that I had chronic lymphocytic leukaemia (CLL), which came as quite a shock as an uncle of mine (not much older than I) had died from leukaemia some years previously. It was somewhat reassuring when it was explained that I only had Stage 1 CLL, and the Consultant’s parting words were that “more people die WITH CLL than OF it.”Small comfort I suppose.

I found it hard to take in and understand what all the different figures of my blood components meant (and still do) having no previous knowledge of leukaemia and its different forms. I’d been given a Macmillan booklet by my consultant which outlined the symptoms of CLL and was put on Watch and Wait with three-monthly blood tests in the short term. I did some research on CLL on the internet, but there was too much to absorb, so I settled for having regular blood tests and coming to terms with the symptoms, principally night sweats, insomnia and fatigue.

Watch and Wait or “Watch and Worry”? How long would this go on? I resigned myself to trying to put Watch and Wait to the back of my mind and get on with my life despite the restrictions that my condition was putting on me. Support from friends and family was there but I don’t think people fully understood how I felt both physically and psychologically.

I’ve not met in person anyone else in the same boat, so I’ve felt alone all along my present journey. At my last discussion with the hospital doctor, he suggested I go onto annual blood tests which, at first, I agreed to, but in hindsight I feel that a year is too long to wait – too much could change in that time. So, my GP has agreed to offer me a test at six months to bridge the gap. I have recorded and graphed my blood test results and from those I can readily see for myself any variations or trends in my condition. This is my only practical way of accepting Watch and Wait.

The annual consultation at the hospital will continue, but I would be far happier if I were seeing an actual Haematology Consultant. I continue to have a good relationship with my GP, who knows of my condition and will talk to me if I have concerns about any issues which may be caused due to my CLL. I recently had shingles and her response and prescription of medication was rapid and the results effective.

Telling my family was something which I did not look forward to doing as I was keen to allay any sense of the panic by my family that I had at first experienced when being told. One daughter already knew, and we sat with my sister and ex-wife to give as full an explanation as possible. They reacted as expected and assured me of their support.

I didn’t have a wide circle of friends and most of them were my work colleagues. I mentioned my current work project earlier and, in its execution, I was playing a lead part in a Task Force, so it was right that I told them as soon as I knew what to say. I convened a meeting including my immediate workmates, my Head of Department and a member of HR.

My main concern that I expressed was my energy levels due to changes in my sleep patterns and loss of appetite. To this end, I proposed that I reduce the hours of my working week and this was wholeheartedly accepted. Over the ensuing two years up to my retirement, I made two further reductions in hours until I was actually on half time. This had no detrimental effect on my completing the current project and I left four months after my 65thbirthday with best wishes and a handsome gift from my colleagues.

My general health over the past six years has been generally good, the most “serious”issue was the shingles, as mentioned above. Annoyingly, this current winter has seen me with persistent colds developing into chesty coughs dealt with by over the counter medication. Luckily, no chest infection has occurred. I habitually receive a flu jab and to date, they have protected me from it.

I have changed significantly, in that pre-CLL I was active and energetic – prepared to tackle the challenges of my work and my domestic situation. I used to rise early and slept well, whereas now I’m tired and lethargic which I try to tackle as best that I can and avoid saying “Why me?”.I now take life as it comes!

Simply do the best you can – there are others far worse off. Not very outstanding advice, but it is seeing me through. It has worked for six years for me and I am determined to continue doing this for as long as my journey lasts.

 

 

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