Lazarus-forum | Paul’s Story

Paul’s Story

As I looked around me in the hospital ward I felt like a fraud. There were a lot of very sick people here and I didn’t look or feel sick at all. As far as I was concerned I was only in here on a technicality. I was to be given a drug called Rituximab for the first time and there was a possibility that I might have a reaction to it! Oh, I reacted alright – shake and bake they call it. Fever then chills, sweating then shivering. Not very nice but a quick jab of steroids and antihistamine soothed it very quickly. So I guess that the hospital stay was justified but that feeling of not really being sick never left me.

In 2006, at age 49, I was diagnosed with a three letter acronym. CLL – Chronic Lymphocytic Leukeamia. Many people who have this disease go on to live long healthy lives without the need for treatment. Sometimes it has even been described as the “good cancer”. But if you look within the small print you will find that there are sub-types that don’t do as well. It was only three years after diagnosis that I found myself in that hospital ward getting my first chemo. I settled into the routine fairly easily. Day one was an infusion of Rituximab. Then three days of chemo in tablet form. Then two days of staying in bed trying to sleep through the ill effects and nausea. By week two I usually felt ok. Then followed two weeks of feeling strong before the cycle would start again. During these good weeks I used to participate in my favourite pastime – rock climbing! At every opportunity I was hanging out of the local sea cliffs. Ironically because of the weight loss I was now able to do climbs that I could not do in my twenties! I was in the top form of my life! So again, in the back of my head was a voice telling me that “You can’t really be sick”.

I had three years of a remission before I needed treatment again. It was to be a different drug but I expected the routine to be same as the first time. It didn’t work out that way. Now when I went climbing I felt that I was carrying someone else on my shoulders. After a promising start the drug had stopped working. There followed a year of multiple stays in University Hospital Galway where the staff were simply wonderful. My disease was progressing and I continued to have reactions to the drug infusions. The many different things I suffered from read like the table of contents for a medical encyclopedia. But through each episode I always thought “This is only temporary, I will be better soon!”. Slowly, gradually, grudgingly and with great reluctance I had to admit to myself that I was, maybe, possibly, sick.

Some days, feeling really ill and sometimes in great pain, I would shuffle into the doctors office to face the usual question.

“Good morning, Paul. How are you feeling?”

And, no matter how bad I was, the answer was always the same. Straight out of my mouth, before thinking…

“Doctor, I feel great”

Is this denial? Is it just stupidity? Ostrich like behaviour? I don’t know. But I think that if you say to yourself, “I feel good”, you have a greater chance of feeling better. If you say to yourself “I feel miserable” then you will definately feel miserable!

Early this year thanks to Professor O’Dwyer in UHG, I started on a clinical trial drug called Ibrutinib. It has transformed everything. I have had no more adverse events for twelve months and I am feeling strong. My disease has started to regress. I have started to climb again but only indoors for the moment. Indeed slowly, gradually, there is a little voice in my head trying to convince me that, maybe, possibly, I am not really sick!