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A Shot in the Arm Podcast
Episode 08 - Colon Meet Cancer: Side Effects
00:19:56
Welcome to a new episode of 'Colon, Meet Cancer' from A Shot in the Arm Media. In this first episode of 2026, Ben shares his experiences of treatment side effects while living with stage four colorectal cancer, and how these impact his ability to live as near a normal life as possible.
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Foreign. Welcome to another and belated episode of Colon Meat Cancer from a Shot in the Arm Media. I'm Ben Plumley and this is a sometimes regular podcast about my journey with stage four colorectal cancer and it's the first episode of 2026. I was diagnosed in April or May 2025. Do you know that one of the benefits for me of doing this podcast is that it has enabled me to prevent the process of diagnoses from just a tumor to full on stage 4 cancer from becoming a complete blur? You know, I wake up and I peer through the curtains to see the barren branches on our maple tree and it's hard to imagine it's still not the scorching heat of August rather than the dull damp cold of winter. Well, we do need the rain here in California. I last recorded at the end of September. Where have these months gone? Well, they've been lost to chemotherapy which as well as taking my hair and as you can see if you're watching us on YouTube or Spotify, it's coming back nicely has also disoriented my hold on what has been going on inside and around me through almost constant nausea and absolutely constant fatigue and occasional tiredness. I differentiate fatigue from tiredness as fatigue is a background wash that determines how I feel pretty much 24 hours, seven days a week. Tiredness is when I overexert myself and combined with the background fatigue sends me to bed and hopefully sleep whatever the time of day. Perhaps worst of all though, is an impish short term memory loss which makes me suddenly forget words or phrases. And that's not an insignificant side effect if you are a podcaster or chairing a meeting. Very recently, in describing to fellow meeting participants the state of the program that we were reviewing, I could not remember even a basic this is not happening as we hoped. And after some umming and ahhing, the best I could come up with was oh, it's all tits over ass. And yes, that caused a fair bit of polite and dismayed laughing. Friends from San Francisco visiting me recently let me confuse my gastroenterologist with gynecologist in a conversation for over five minutes. One friend, who I shall call Mrs. Peel eventually took me by the arm and said, dear, I don't think you mean your gynecologist. So getting into it, the big news is that at the end of October, my oncologist yes, really, my oncologist is gave me what to his mind and mine was terrific news that Colin, my A1 super tumour in the cecum had responded to treatment, and that a partial reduction in size could be seen after a CT scan. It wasn't growing, which in turn might then form a blockage. And of course, the cecum connects the small intestine to the large intestine. It's the little pouch where stools begin to be formed. Who knew I could now move to maintenance therapy. After this successful period of induction therapy, I had high hopes for and limited understanding of what maintenance therapy is like. A couple of pills, I might not back once or twice a day with limited or no side effects, and that would allow me to get back pretty much with my life. Alas, no. In this context, maintenance therapy is essentially the same course of therapy, that is infusion at the clinic every two weeks, but with the two killer chemos, the ones with the really awful effects removed. And let's see if I can get their names right. The evil Oxaliplatin and its vile twin Irinotecan. Yes, I did it. What remains is the monoclonal antibody bevacizumab, folinic acid, and the more traditional chemotherapy 5 Fluoracil, or as we like to say, 5 fu. Bevacizumab and folinic acid are infused at the same time, take about 30 minutes in total, and then, as in induction therapy, the 5FU has to be infused slowly over 46 hours via a pump attached to the port above my chest, which, with the folinic acid, allows it to have maximum impact on rapidly growing cells, including cancer cells. So I don't escape the chemo bumbag, and I'm pretty much out of action for two or three days before Eric removes the pump. It is yellow. It's about the size and shape of a lemon, and so, not surprisingly, we actually call it that the lemon. My niece Daisy gave me a yellow Lulu melon bumbag, so that matches nicely. You'll see then that even maintenance therapy is all a bit complicated. And 5fu is not without its side effects, more nausea and fatigue, not as intense as before, but still there. The other fascinating and painful side effect is teeth pain. I knew about the risks of sores to the gum, and indeed I have experienced them, but this is something a bit different, a kind of neuropathy affecting the nerves in my teeth and jaw. So it has not been plain sailing, and my expectations for an unfettered future life and career have been curtailed. I'll come back to other side effects later in the podcast, but before that, in more latest news. In early December and a couple of cycles into maintenance therapy, I somehow became infected with Clostridoides difficile, or C. Diff, as I shall now refer to flourishes when healthy gut flora are wiped out, as in chemotherapy, thus allowing it to overgrow. It caused me dreadful, constant diarrhea and nausea, leading to my first full vomit of this cancer journey. And I bet you're thrilled to know that my next infusion was postponed just as I was sitting in the chair in the clinic, ready to get started. C Diff was accompanied by a strange and increasing shortness of breath and dizziness whenever I got up. So I decided to call one of the oncology nurses to discuss my symptoms and she immediately recommended, and that's putting it politely, that I go straight to er, or as we say in the UK, A&E Accident and Emergency. I was seen rapidly and quickly moved to my own room. I submitted both arms for blood to be removed a few times and the results came back showing that as a result of the near constant diarrhea, I was extremely dehydrated with very low magnesium, potassium and sodium levels at equal pace. And that pace was beginning to concern me. Why was I being thrust to the front of the queue? I was given an ultrasound of my chest, which later revealed a blood clot in my left lung. Now, how on earth did I get that? Could it have travelled up the body from my legs, as is often the case with these pulmonary embolisms? A later ultrasound of my legs showed that there were no blood clots there. Could it be a side effect of colorectal cancer itself, which triggers the body's clotting system, making blood more susceptible to a clot formation, a condition called hypercoagulable state? More broadly, cancer cells release a protein called tissue factor that makes blood cotting more likely. And a pulmonary embolism can also be the sign of aggressive cancer spreading to the lungs. So, bottom line, there was no going home. With just a pat on the back, a Strepsil band aid and a fistful of painkillers, I was instead promptly admitted to hospital. I ended up spending two nights in Ward 5 of one of Kaiser's Sacramento hospitals. And a couple of things of that experience stand out to me. Firstly, while we have all been banging on about the impact of AI in healthcare delivery this year and marveling at the almost weekly announcements of new biomedical innovations. I don't think the basics of care have changed, and those basics are the fundamental human interaction with patients that are led by nurses. Kaiser Permanente has seen its wave of industrial action by nursing staff in California this year over wages and working conditions. But nonetheless, the nursing staff's experience and skills that I've experienced on my journey really have just been out of this world. I honestly don't think I would have made it mentally and emotionally, let alone chemically, if it had not been for the exceptional cadre of nurses at the Effusion Clinic and Ward 5. I am lucky or not that I've been able to read up in the published literature just what to expect biomedically. But this gives you no guidance on how to experience the biomedical, how to get through the side effects and thereby how to hold together your mind and spirit. And the nurses and counselor at Kaiser have been rocks guiding me through cancer's troubled waters. Secondly, I'm also impressed, as I regularly am in urban California with the diversity of the whole staff, the different cultural backgrounds coming together to to be American, blending and weaving together a quality of care that really outperforms the unanimity, imbalance and exclusion of a monochrome society. I'm thinking particularly about the Kenyan, Nigerian and Filipino American nurses on Ward 5, the Indian and European American infusion nurses, and the Korean American and African American clinical staff overseeing my treatment. It's a world in a village and I really don't mean this to be a political statement, although how can it not be in today's environment? But I just see how a multisectoral care package benefits from the insights, behaviours and attitudes of a multicultural care team. So I was hydrated and infused with essential electrolytes and injected with a blood thinner and believe it or not, I rather enjoyed the food they served. So just two nights in hospital and then I was discharged and at home just in time for the holidays, which in my case is Christmas. Christmas, it's a happy and a holy holiday. But oh boy, oh boy, do I not like Christmas. It never meets the over expectations I formed as a child and somehow still yearn for as an adult. But this year Eric and I had a small, lovely family affair. I even excelled, though I say this myself, in making a traditional British trifle, complete with birds, custard and sherry. My gift to Eric this year was a painting, a representation of the Filipino mythological serpent Bakunawa that tried to eat the moon. Seven versions of them for each night of the week. And I received a collector's model of an eagle space transporter, which features in the 1970s Jerry and Sylvia Anderson TV series Space 1999. It has a fascinating design and was made into toys for young kids of my generation. It took me back, but particularly to its structural weaknesses I had always questioned when watching the show of a Saturday morning in the school holidays. It seems like it's just held together by a crisscross of bars. How on earth would that be able to overcome the stresses of flying into and out of new worlds? Look, Plumlee is a NASA engineer. What the hell do I know? But I say all of this because to me it was a statement that I was celebrating Christmas in the way I always have done, and that was a really good thing. But this was also a bit of a strange Christmas with dark clouds on the horizon of our merrymaking. I suppose this must be a question everybody living with cancer asks, and especially those of us who rely on maintenance therapy to keep the tumors in check, never ever eliminating them, but containing them for as long as possible. And that question is, will this be my last Christmas? And no, I am not referring to the Wham Evergreen holiday hit single. I came out of hospital alarmed and disoriented at being diagnosed with not only one condition, but cancer. Not only a second condition, cedif, but wait, yes, a third condition, a pulmonary embolism. I have now become acutely aware of how little control I do in fact have over my body. So what else might be in store for me? How do I expect the unexpected? How do I prepare myself and my loved ones if I will not be here next Christmas? And if I am, what will be the state of my health? I've been generally surprised at how calm and positive I've been this year. Now I don't subscribe to the yeah, cancer sucks, but cancer suck this you mofo school of thought in all its various manifestations. And no, I won't eliminate my cancer. I just have to get on and live with it with the help of the qualified assistance of chemotherapy and the full on psychosocial support that I get for the rest of my life. But I will not be defined by cancer. Sure, I'm a person living with cancer, but I'm much, much more than cancer and that is the source of my strength. I realized sometime in November that my return to full or part time work will be hard. That was a sobering realization. International infectious disease policy making and strategic advice with all those travel and meetings that go with it, I just don't have the energy for that These days. My body has a good few hours in the morning, but then I'm bushwhacked, unable to do anything but lie down. Recording this podcast, for example, will knock me out for the rest of the day. And while I'm still obsessed with being part of the AIDS movement's drive to end the HIV epidemic for good. It won't be in my lifetime and I may not be able to contribute to the good fight in the professional ways I thought I might be able to contribute to a year ago. So I think I will also try to write a series of essays oh how Aldous Huxley of Me from my vantage point of what we should expect realistically in the trajectory of the AIDS and HIV epidemic this century. Bar a miracle of a cure and everlasting prevention. But watch or listen to a Shot in the Arm podcast if you're interested in that. It's the start of a new year, 2026, and it's that time for resolutions. So besides improving my trifle making abilities, I hope for serenity and acceptance of what befalls me with opportunities to grow with Eric, my loved ones and my family and my friends around the world. I hope for no physical pain, or at least as little physical pain as possible, and to be at peace with whatever gets thrown at me and indeed all of us in 2026. So here's to a happy, prosperous and life affirming 2026. And thank you as always for joining me on this journey with.