I Got It So Wrong!

Yesterday I was at a support meeting for people with blood cancers and as is usual with this sort of thing I had to introduce myself. Easy, “my name is John and I have Follicular Lymphoma”. It was then that I realised that I had it wrong and I needed to correct myself. “Actually I said Follicular Lymphoma has me”. Which set off a whole new direction about the disease in my mind.

When I was first diagnosed with Lymphoma in 2016 I underwent six rounds of R-CHOP chemotherapy. I was probably one of the lucky ones, other than losing my hair and a small amount of fatigue I barely noticed being treated. This time things are so much different. Although it didn’t start that way. When I began treatment for the second time early in 2020 everything was again simple and easy. R-Bendamustine, the chosen second line, again had little in the way of side effects. I even managed to keep my hair this time. All this started to change when after four rounds I had my first PET scan.

Results of this scan showed that the chemotherapy had produced what could best be described as a partial result. The remaining two rounds and a further scan showed a deteriorating result leading to another regime (ICE) being tried before the stem cell transplant. Those who have read my previous blogs will know that the stem cell transplant failed. Then I had a couple of rounds of another regime (GDP) before chemo was suspended altogether. All going well I hope to be entered into a trial starting shortly.

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All that brings me back to last night and Lymphoma having me. So what do I mean when I say this? Quite simply as the disease has progressed so has the way it dominates my life. In fact it’s not just my life it dominates. It also dominates the conversation of the people around me when they talk with me, it’s the first thing out of their mouths. Last weekend my oldest son was married at a small intimate ceremony. I knew most of the guests but even those I didn’t know knew my story. So the first thing out of almost everyone’s mouth was how are you? Don’t get me wrong I am sure that the concern was genuine but it meant that the disease is reinforced as a condition I have. Towards the end of the ceremony fatigue was beginning to take hold and I found myself having to sit in a quiet spot. This only brought more concern.

It’s not just in a social situation that things have changed. The way my wife and I communicate is also dominated by the disease. With so many visits to the hospital over the last few months almost a daily question is what’s happening today? With the side effects from the chemo therapy also dominating my life the other question is how are you feeling today?

Talking about multiple visits to the hospital. That’s also a place where when you get chatting to others in the waiting or treatment room you cannot help but talk about your disease. Recently I ran into an acquaintance who almost immediately noticed the PICC line in my arm (I was wearing a T Shirt) two guesses, what we talked about. So it seems that in my life I cannot get away from the Lymphoma. It’s not quite chasing me down the street but it is dominating the conversation and I need to work out how to change that.

One other thing that really gets me at the moment is the number of people that tell me I look so well. We had a motorhoming friend I hadn’t seen in a while pop around the other day and like others told me the same thing. It makes me wonder how people expect me to look. Maybe the fact that I haven’t had chemotherapy in the last six weeks has made me look better. It’s sad to think that the reason that I look better is because the treatment that should be making me better doesn’t work and they have stopped giving it to me.

Taking my life back from the disease is probably easier said than done. Obviously some people are showing genuine concern around my health. Telling them that I no longer wish to discuss things may send the wrong message. Maybe I need to be more proactive, answer the question about my health quickly and then move onto another topic. So the conversation moves away from Lymphoma towards something else. I think that assuming I am accepted to the clinical trial and the time between doctors visits begins to expand. We should be able to restart using the motorhome on a more regular basis. This will open up other topics of conversation allowing us to move our focus from the Lymphoma.

Talking about the trial, I think that’s my hope to start rewriting the story. I am sure that initially there will be lots of interest in the trial. But assuming I suffer no major side effects and start the long road to recovery without having chemotherapy. I am sure that interest in what is going on with me will begin to wain. I would hope to get to the point where writing this blog is no longer necessary. In fact it’s more than probable that writing the blog is exacerbating the very thing I want to change.

I look forward to the day when I can again stand up and say “My name is John and I have Follicular Lymphoma”. Knowing that I have retaken my life from the disease.