“Before I received my chronic lymphocytic leukaemia (CLL) diagnosis, there was nothing that pointed to any illness in my general health. I had no idea that I was even slightly vulnerable to CLL.
My diagnosis came somewhat out of the blue. I went to Nepal in November 2012 on a charity help activity. It was an amazing experience, and I would like to think that the group of us from Action Aid made a difference.
On the return flight from Delhi, I sat beside a man, for the eight-hour flight, who coughed almost continually. I thought nothing of it, as I was perfectly healthy and unless this was some indigenous disease, I would fight it off. Consequently, I developed a cough.
To start off with, it was just an irritation, but it continued. It wasn’t particularly bad, but not something that I felt was right for me. I had an appointment with the GP after about six months of the cough (not due to waiting lists, but because of inactivity on my part).
The first examination ended with a course of antibiotics, however not a lot has changed as a result of them. After another delay, I had a second appointment with the GP, who then referred me to the local hospital for a chest x-ray. I was given the all-clear, and no further action was required.
However, the cough persisted. I went back to the GP, which ultimately led to me having blood tests in June 2017. I was then called into the GP surgery for a follow-up consultation where I was diagnosed with chronic lymphocytic leukaemia (CLL) stage A.
It was sort of a shock, but I had prepared myself for something unpleasant as all the other options had been ruled out. My reaction was, “Not the news I wanted to hear, but we are where we are.”
I next received a letter from the cancer unit at St Richard’s Hospital. The clinical lead nurse was brilliant! She was very cheerful and explained everything I needed to know. I was very grateful for the early diagnosis even though it came from an examination (in my opinion) that had nothing to do with a search for cancer. I was introduced to the lead medical doctor, who explained the route of discovery to me. I was also told that I was more likely to die with CLL than because of it – happy with that!
I had a couple more appointments at the Fernhurst Centre for my subsequent blood test results. These were every six months on Watch and Wait. After a couple of years, I was told that I was to be transferred to monitoring annually by my GP. In my own way of saying it, I was not getting sick enough fast enough, but I was more than happy with that.
So, for the last couple of years, I have had my annual blood tests and my blood seems to be very stable. I will continue on Watch and Wait until some intervention is required. I was, and still am, enjoying golf, walking and keeping busy.
I attend the Leukaemia Care support group in Chichester, but I do feel like a bit of fraud when I hear some of the stories of others who attend. The group is very friendly and I have learned a lot from just being there, so I would recommend attending support groups if you can.
The main point of this epistle is not to show you how I have with CLL, but to make sure if something is not right for you, then persist with the GP until a solution/reason is found. It is the ‘something’ that is not ‘right for you’ which should be the driving force. Don’t be fobbed off with some generalisation; stick to your guns and do whatever is necessary to find out what is wrong. It may be a complete surprise but at least you will know. Unless I had made a pest of myself and had the blood tests, I would still be ignorant of my condition. Who knows what might have happened over the last couple of years if I had not been aware I was clinically vulnerable and behaved appropriately!”
Do you know what the six most common signs and symptoms of leukaemia are? They are:
- 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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