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TAP can save your life, it saved mine

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01 Aug 2016

I’d retired and was setting about enjoying life, making plans and doing the things I’d put off. But I noticed that I wasn’t my normal energetic self. I’d started picking up colds and coughs, and my immune system was down.

So I spoke with my GP who’d known me for years and agreed this wasn’t normal for me. He suggested a battery of blood tests. When I got the call to come in for the results, to be honest I didn’t expect to hear that I had blood cancer. Well, who does? But when they uttered the words, I was dumbstruck.

It’s strange when you hear that you have cancer. Everything seems to stop. All the questions you had disappear and what you’re being told flies over your head. All you can think of is that you have cancer. I was devastated. I’d reached my late fifties and avoided any serious illness. And now I had chronic lymphocytic leukaemia (CLL). It was at an advanced stage and my organs had begun to deteriorate.

I decided early on that I really didn’t want to go through chemotherapy. It can devastate your system. I’d known friends who’d been through it and seen what it did to them. I desperately wanted to avoid it. So I researched the condition. I used the Bloodwise website and various other sites. That’s how I found out about a new treatment called Ibrutinib, an alternative to chemotherapy, which is non-toxic.

I discovered there was a trial being conducted on it that was supported by TAP. Having carefully discussed my options and the potential risks with my consultant, I decided to join the trial. One thing was for certain, I wanted to see if Ibrutinib was for me. I didn’t have any reservations about it, I’d done my research and taken expert advice. And fortunately I was able to join the trial. 

The treatment itself has been very straightforward, I simply take three pills in the morning. I have managed to avoid any major side effects – no sickness or hair loss. More recently I've experienced a few other side effects, but nothing major and I have no regrets. The whole experience has been far simpler than I thought. I used to be 0% me, 100% cancer. It consumed my every thought.

Thankfully, by being part of the trial, I’m now 95% me and just 5% cancer. It never goes away completely and I’ll have to take the tablets for the rest of my life. But that’s a small price to pay.

I count myself as being very lucky indeed to have been allowed to participate in this cutting-edge research trial. It offered me a fantastic opportunity to get a treatment I wouldn’t otherwise have had access to. TAP can save your life, it saved mine.

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