Paul S
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Taking on hairy cell leukaemia

Paul S
Posted by
08 Aug 2017

My experiences of leukaemia and why raising money and awareness for charities like Bloodwise is so important to me

 

It all started in 2006 with me I visiting my GP on four separate occasions to inform her that I felt unwell. I couldn't really put a finer point on it, just that I felt unwell. Initially my GP thought I might be suffering from stress (who isn't these days!) so other than some advice on that topic no further tests were carried out.

What made me realise I was really ill was the Christmas period and then New Year’s Eve 2006/2007. I couldn't finish a glass of wine – decent wine at that – so I knew it was serious! I hastily took myself off to the Doctors on the 2nd of January 2007 and insisted that some tests were carried out. As luck would have it I was able to have a blood test that very day.

The following day my GP tracked me down to inform me that my results showed that I was seriously deficient in iron, and "did I have Medical Insurance, as we need to get you to a Consultant right away".

A few days later I visited my Consultant who re-tested my blood and then slipped into the subsequent conversation: "the trouble with these types of Leukaemia is............ blah, blah, blah".

Well imagine my surprise... as I had been thinking a few decent steaks would solve the matter. I had quite a bit of knowledge of leukaemia as my Grandfather sadly died from it in 1977 when I was a teenager so I immediately knew that the treatment was not going to be much fun.

I was 42 years old at the time of my diagnosis. It was one of the rare forms known as hairy cell leukaemia, which (unbeknown to me at that point) turns out to be one of the forms of blood cancer that research has been very successful with.

Undergoing chemotherapy, and my darkest moments

As my blood count was so low I duly started treatment within a matter of days. I was prescribed a combination of chemotherapy (Cladribine) and a non-chemo drug called Rituximab which is now more commonly available but at the time was not licensed for use in this manner. Within days the chemo had started to do its thing, and I was somewhat bed-ridden if not totally so.

I then experienced the usual complications of infections, high temperatures, nausea, and all manner of other side effects from the concoction of drugs I ingested daily. Indeed, I remember 'enjoying' my 43rd Birthday in hospital hooked up to a bag full of chemo for the day. Fun, fun, fun!

Over a period of the next few weeks and months I had a few scary moments where I needed urgent hospitalisation for platelet transfusions etc and some of those stays in hospital were, I have to say, my darkest moments.

Facing blood cancer as a family

I think one of the main issues with any form of serious illness is the psychological effect it has upon you. We all like to think we are invincible and to a degree take life for granted – so it's times like these that shake you to your core. As a Husband and Father of children – who were 17 and 14 at the time – you like to feel that you are the strong one who can handle everything for your family. Yet there you are... weak and feeble, feeling vulnerable.

It also places a great strain on your closest family members, as they are the ones who are fit enough to worry and have all the running around and nursing to do when you are at home for extended periods. And the phone never stops ringing with well wishers, which as nice as it sounds, can get wearing on your spouse as they relate the same story over and over.

To help with this I actually set up an email system to keep all my friends and family informed on a weekly basis as to my progress which I know many of them felt was a great idea as it saved them from bothering Sue.

Making a full recovery, and enjoying life to the full

My treatment turned out to be a terrific success and after a couple of months rest period I endured a second course of Chemo/Rituximab to 'gold plate' my initial course, as my Consultant put it. Second time around my body accepted the drugs more robustly and I sailed through entering full remission only 5 months after diagnosis.

Looking back and knowing what I now know about many of the 137 forms of Blood cancer I know I was extremely fortunate to be diagnosed with such a treatable form of the disease. And I know for a fact that had it not been for much of the research funded by Bloodwise over the past 56 years I would not be here enjoying life, cycling to France (is that enjoyment??) and all of the many other facets of my busy life.

I shall continue to fundraise for Bloodwise until we finally beat blood cancer!