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.

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.

Published by licencedtoretire

Retired, or at least for now

4 thoughts on “I Got It So Wrong!

  1. Hi John – thanks for sharing your journey with us. As hard as it is – it always helps knowing others are going through this crazy time in their lives. Sure is tricky with the balancing act!!! Our daughter Tamsyn Cornwall (31)- has had IBD for 22 years and August 2020 diagnosed with Stage 3B bowel cancer. After surgery to remove her large bowel (and create a stoma and iliostomy) last September. – then a couple of goes with egg freezing – she started chemo last November (originally CAPOX – then FOLFOX – and then FOLFOX without the oxaliplatin). Next Wednesday will be her last round of chemo – then back to surgeons for a couple more ops to create a large intestine from her small intestine (J Pouch) then another to reverse her iliostomy. Her Instagram page is @nysmat (her name spelled backwards – haha). She has over the last 23 years (even though crazy nasty stuff) chosen to try and be as positive as she can (I know – a cliche) but has definitely been a tool that has helped. Plus being an Ambassasor for Bowel Cancer NZ. Being her mum – I am in awe of her. I feel so privileged being her carer and support person (though she has huge support from the cancer society and Crohns & Colitis Society – we feel sooooooo lucky). Anyway – just wanted to send you some sunshine and so proud of what you have gone through so far. Go the trials!!!! You have got this 🌞🌞🌞🌞🌞 Julie Cornwall. PS – Paula Greenville kindly sent me the link to your blob. Another amazing friend I am in awe of 🌺🌺🌺

    Liked by 1 person

    1. Many thanks, Julie. My oldest son has Crohn’s so I understand a little of what has happened to your daughter but his symptoms and condition pale into insignificance compared to what Tasmyn has been through. Anyway really glad that you have enjoyed my blog and that you so much for the sunshine you have sent me. I will keep the two of you in my thoughts

      Liked by 1 person

  2. I hear you! I have a different kind of lymphoma. Been fighting it for five years. It can be hard finding a balance when the disease is a constant presence. But we are still whole people with many and varied interests beyond the fight. I was on a social Zoom recently with other patients. It was billed as a social gathering, and we didn’t talk about lymphoma once!

    Liked by 2 people

  3. You are an awesome writer John. Great words and succinctly spells out the issue. For those who have loved ones going through obvious pain and struggles, knowing how to chat with them is an important topic. It might be the first time you’ve seen someone in a while so you want to address the obvious, but the person has been talking about it all day and would really rather talk about the rugby/racing/yachting/election/business etc. Being sensitive and knowing when to move onto lighter topics is probably more helpful than we realise. As someone sympathising with a hurting loved one you don’t want to appear unsympathetic by ignoring the elephant in the room, but we also need to be aware that it is possibly all they have been talking about lately. Help them access some semblance of normality by focusing on other interesting topics is a great tip. God bless.

    Liked by 2 people

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