Andy W
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My battle with chronic lymphocytic leukaemia

Andy W
Posted by
21 Mar 2014

Tuesday August 15th 2006 was just another ordinary day, the only real difference was that on that day I had to attend Grantham Hospital to have a chat with a haematologist for what my GP had said was simply a "routine appointment... nothing to worry about”!

I had been given the appointment after suffering a few weeks of symptoms including stomach ache, headaches and most prominently, fatigue. I recall sitting calmly in the waiting room of the clinic waiting to have some blood taken before I saw the consultant and remember looking at the slip in my hand. Next to the boxes on the slip to be ticked for blood samples required was a small handwritten note which read simply "CLL aged 40?” At the time it meant nothing, what was CLL anyway?

I was escorted into the consulting room by a nurse who then proceeded to measure my height and weight before showing me through to the consultant himself. He then asked me to lie on the couch and checked my neck, groin and under my arms. Once this was done I sat down and after a short introduction as to the history of my journey to my being sat in this chair on this "normal" day, he looked at me and said simply "I'm sorry to have to report that you have chronic lymphocytic leukaemia". I remembered the note on the blood test slip, but strangely, even now, I was still ignorant as to what those three letters meant...or indeed the impact they would have on my life from that day forward.

"What is CLL?" I asked, at which point the consultant, perhaps realising then that not all of us recognise every acronym, explained that it was a chronic form of leukaemia....blood cancer!

When you hear other people tell you of their experience in being diagnosed with cancer, any form of cancer, you often hear them say that in the instance that word is mentioned, their world stops. In my case I felt the same. All the other words after that word meant nothing. The consultant’s voice became a background noise as my brain attempted to put the words "Andrew Ward" and "cancer" into the same sentence. I remembered thinking how this was not supposed to be in the script for the story of my life...but now, somehow, it was.

After having a routine chest x-ray, I was allowed home. I was supposed to have been travelling on to my workplace at a hospital in Sutton-in-Ashfield after my appointment. Strangely enough I didn't really fancy going after my recent chat, so I went home to my wife whom I found upstairs carefully folding clothes, just an ordinary activity on this hitherto ordinary day.

She said something like "how did you get on?", and I remember telling her quite directly in almost a detached from myself way, "I have leukaemia". She stopped folding clothes and replied "You are joking aren't you? Please tell me your joking!" Of course I wasn't and I couldn't . We sat together on the side of the bed holding each other close and cried.

The next few weeks were something of a blur. My biggest problem was awful insomnia and even though I did try to carry on for a few days at work initially, the lack of sleep, fear, uncertainty and stress eventually lead to my having to take two or three weeks of sick leave just to try to come to terms with my recent diagnosis.

As the weeks passed and having gathered copious quantities of information from books, magazines and of course the internet, I slowly began to understand my enemy and with understanding came acceptance.....grudgingly!

In January 2007 I decided that after all the stress and anxiety I had had to deal with over the last few months I deserved something nice. And after considering what would best serve as a "pick me up", I bought myself a car. Not a new car or even a flash luxury car, but instead a model of car which had, in days past, always made me feel good! So, after a train journey to Ipswich, I became the proud owner of a Silver 1992 Volkswagen Scirocco Coupe......wonderful!

After many long months of feeling sorry for myself and having no real "spark" in my life, I now suddenly had an interest and I immersed myself in my new found hobby.

One important thing I did was to join an online community of Scirocco owners called the "Scirocco Register" and I soon made some great friends with whom I shared this common interest. It was through this community that I was able to be offered a very special car, which, after a little TLC, was to become a great source of adventure and, in some ways, therapy!

Scarlett, as she is now known, had sat on the kerbside outside a house in Leicester for almost six months. Her MOT and road tax had almost expired and her paintwork badly faded. Add to this a flat battery, leaking fuel hose and jammed handbrake, plus the fungus on the inside of the windscreen and you start to get some sort of idea as to why her owner was looking to sell her. The advert on the owners’ club website had asked for offers of around £100 just for a quick sale. I responded to the advert and arranged to go over to Leicester and buy the car...I had great plans for her future!

Steve, the owner, once we had agreed a sale, asked what I intended to do with the car. "I am going to fix her up and use it to raise money for charity mate," I told him. “What charity would that be?" he asked. I told him it was Leukaemia Research (now Leukaemia & Lymphoma Research. He put his hand in his pocket and gave me back the £100. "My daughter had leukaemia when she was 6," he said. "Now she is 26 and that's mostly down to charities such as that one. Take the car for nothing and do something good with it."

And I did.

August 24th 2007, slightly over a year since my diagnosis, the car crewed by myself and Teresa completed a challenge to visit as many hospitals as possible in a 24 hour period. We managed 35 and raised £1,500. The challenge was called "Roc Around the Clock"

September 6th 2008, I and a very good friend and Scirocco owner called Glen Place drove the same car, this time now with a trailer made from a second Scirocco, to Gibraltar and back. Almost 4,000 miles in under 10 days – we raised over £4,000 for three charities, including more than £1,500 for Leukaemia Research. The challenge was called "Scirocco 2 Morocco" (although changed later to Scirocco (Almost) 2 Morocco as we ran out of cash and could not afford the ferry to North Africa!)

In 2010 the car yet again had a mission, this time she was resplendent in a new graphics scheme to celebrate the 50th anniversary of Leukaemia Research and also to show off the new name for the charity which was now known as Leukaemia & Lymphoma Research. The project was Scirocco 50 LLR. The highpoint of that year was when we went down to Tredegar house for the annual car show and we were allowed to drive around the display arena whilst the Chief Executive of Leukaemia & Lymphoma Research spoke of the work of the charity and about our fundraising adventures!

Since then she continues to wear the graphics, still promoting the charity with which I, or perhaps more fittingly, we, have become inexorably connected. No adventures recently, just a daily commute to work......to continue my "normal" life as a leukaemia survivor :-)

So in a bizarre twist being diagnosed with a life threatening illness, after first causing me to view my life as being over, has in fact by virtue of my active participation in fundraising, given me in immense feeling of worth and accomplishment. To date my red stuff is behaving itself and seven years post diagnosis I am still on ‘watch and wait’!

Any more missions planned?  We shall see!

Let’s fight for a cure. Become a leukaemia warrior, Run, swim, cycle or drive - let’s help Leukaemia & Lymphoma Research to keep more people alive!

Andy blogs about his leukaemia and his fundraising at www.scirocco2morocco.blogspot.com 

Comments

Anonymous
13.05.2014

I've just stumbled onto this site and after reading your blog want to say you have lifted a heavy heart....thank you. My husband was diagnosed with cll in January and we are on watch and wait....you can't describe the scale of emotions you go through....he like you has developed this condition early(46) but now I feel like I have some where to go, where people understand.....

Anonymous
14.05.2014

Hi Jani. Thank you for your kind words. Always nice to get nice feedback from folk :-)

Hope your husband is doing well and keeping in good spirits. Having a positive outlook can make a lot of difference when faced with something fearful and negative.....take care and best wishes.Andy

Anonymous
02.11.2014

Just read your page , I have had CLL for 4 years now and at the moment, feel very low, your words have fuelled me to get up and go again. I was a very active person but the last month has made me feel so tired and a bit weepy, comes and goes, I do try and get out everyday, somedays pushing my self. I am 61 and somedays feel 101

It is hard for some people to understand has I look really well! they also think that Leukaemia is something that children get , some people think it is catching and stay away from you, others totally clueless.

Every year my husband is santa at the garden centre raising money for Lymphoma and Leukaemia research.

I send my best wishes to you

Patty

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