Paul Binyon: my story

Paul was oblivious to the signs and symptoms of leukaemia when he started experiencing fatigue and dizziness. He put it down to having young kids and his busy job as a Fire Officer. But two weeks before his 50th birthday, he was diagnosed with chronic lymphocytic leukaemia (CLL). Paul shares his story here...

In October 2016, I was two weeks off my 50th birthday.  I was a married father of three children and a Senior Officer in a Fire and Rescue Service. For several months, I’d been feeling tired and washed out, occasionally a bit light-headed and dizzy. But I always put it down to having young kids and a busy job. I’d go to work, but by mid-afternoon, I would feel as if someone had pulled out my power cord. Then, shortly after I’d returned from holiday, I went for my normal lunchtime run – but I could barely do more than walk. On returning to the office, I noticed I was finding it was an effort to get up the stairs. This was not like me at all. I spoke to my wife about it and we agreed that I would see the doctor. It was around this time that I also started experiencing night sweats which solidified my decision to get myself checked out.

As a Fire Officer for over 20 years, I was accustomed to annual medical check-ups, but nothing untoward had ever shown up.  A few months before, a routine check-up with my GP had shown I had high cholesterol, which I had never had previously, but there was nothing at all to suggest anything more serious was going on. 

The night before my appointment, I was remotely monitoring an incident during the night and was on the verge of giving the appointment a miss. However, in the end, I decided to go. I was seen by a Junior Doctor who was being mentored by one of the more senior ones. They suggested I should go for some blood tests and when in passing, I mentioned the night sweats I’d been having, I could see both of their ears prick up. It seemed to get everyone’s attention and I was advised to go for the blood tests that very morning. Having been awake during the night, I wasn’t keen and suggested I would go the following week. But at that point the senior doctor gestured to the more junior one quite vigorously and I could tell they thought it urgent for me to go. At that point I had a feeling something was wrong. 

At the local cottage hospital, I was having my bloods taken and chatting to the nurse when she suddenly stopped dead and said ”you know, you are very pale’. This was another step on the road to thinking there may be something wrong. In fact, it was later that day that both my wife and I realised I hadn’t been a very nice colour recently.  We just hadn’t noticed until then. 

I returned home to four missed calls from the doctor. When I telephoned back, I was told I had to go to Wythenshawe Hospital straight away as my bloods were seriously low. If someone could not take me, they would send an ambulance. This got me worried.

I was admitted to Wythenshawe and had two pints of blood transfused that night. In the next couple of weeks, I was referred to a haematologist and had further tests carried out, including a biopsy on one of the lymph nodes in my leg. At this point, I was told I had blood cancer, but tests were needed to ascertain which type.

Hearing you have cancer is very scary. I felt as if I had been punched in the head. By now, I had begun to suspect that this might be the problem – there seemed to be no other explanation for my blood test results when I was clearly not losing blood from anywhere.  Shortly afterwards, I was told I had CLL.  I had so many questions – I wanted to know what this meant and how long I would have to live. But the consultant was very reassuring and convinced me that he would sort me out.

Then my treatment journey began. I was put on the Flair trail and started on FCR. The treatment lasted for seven months and I was able to undergo it as an outpatient. The fatigue was tough, but I was lucky enough to have few other side effects and was not very sick.  I was off work during my treatment but was able to go in during the weeks that I was not being treated. The Service and my colleagues were extremely supportive.  After the seven months were up, bone marrow tests showed that it had been a success.

I was told I had minimal residual disease (MRD) which did not sound good to me, but the doctors explained that this was normal and that my CLL was at a very low level.  It has been hard coming to terms with the fact that I have cancer in my system, even at a very low level, but I have worked through this over time and accepted it. 

I am now having regular check-ups every six months. During all this time my white blood cell count has been very low and in late 2017,  I contracted meningococcal encephalitis – which came very close to being fatal. However I survived, thanks once again to the excellent care at Wythenshawe Hospital.

I recognise that the CLL can return at any moment. But it is also likely that something else may be fatal for me in the meantime.  So the best I can do is just enjoy life.  If it does come back, I have to hope that it can be fixed.

I know that my journey could have been very different if it were not for all the developments in research and the new treatments available to blood cancer patients. Raising awareness about the signs and symptoms of the disease is key. But I want to share my story so that people can see it as something positive – when you are diagnosed with cancer, you assume that’s it, you’re done and you’re going to die. But that isn’t always the case.  Since my diagnosis, I’ve moved house, been promoted and got on with my life, it hasn’t meant the end for me.  Of course, I feel a degree of anxiety whenever I go for my check-ups, but most of the time, I don’t even think about it.

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