← A Shot in the Arm Podcast
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Foreign. Welcome to Colon Meets Cancer, brought to you by a Shot in the Arm podcast. It's been a busy few weeks, but before getting into it, I just want to express my deep gratitude for the kind comments you all have been sending me. Even the one that accuses me of being a pervert and that I should die painfully and that I should go straight to hell. Well, maybe I'm not so grateful for that comment, but for all the others, it really means a lot. It makes me feel connected at a time when I feel at a loss. Lost at sea, as it were. Lost in Northern California. People ask me, how am I doing? When I had energy, I'd respond in depth. These days it's easier to summarize the riotous differences in nausea, malaise, or teeth pain. And as an example, teeth pain before chemo, I had never experienced anything like this. So systemic, so harder baked. Ache in the dentin. That's the soft bone like material underneath the enamel and the pulp underneath all of that, where all the blood vessels and rapidly growing cells that chemo loves hang out. So to minimize the risk of sounding like Julie Walters performing a Victoria woods sketch, I've come up with what I hope is a simple and easily understood phrase taken from the First World War. I'm up and down, Jock. Up and down. Now the very lovely Venezuelan Canadian activist Marianne Torres asked me, how are you feeling? And I gave the reply, up and down, up and down. And it didn't take long to get this response, as in a trampoline. Touche, Marianne. I have been trying for the last few weeks to record the next episode of Colon Meet Cancer. I know it's been a while. It's been bloody difficult. Not because I don't have anything to say. Quite the reverse, in fact. I've got too much to say. And I'm not sure how much of this is really related to this podcast. Colon meets Cancer. It's about living with stage four colorectal cancer. For example, I'm literally force feeding myself animal protein, which supposedly is good for me, but which makes me want to vomit it all afterwards as it makes me sick. It's increasingly clear to me that humanity has to embrace veganism as the only moral way to live. And yet at the moment, the alternatives can often be no more appealing than a plate of ground toenails. Now, is this a topic to get into here about stage 4 colorectal cancer? I don't think so. I suppose appetite, etc. Etc. Might be par for the course, but the issue isn't really about chemo or cancer related lack of appetite, to which I can only say I'm really suffering from a very poor appetite. But let me tell you, if Gray had a taste, I'd know what that was like. I thought a great title for the episode would be to borrow from the great bard Shakespeare, A Comedy of errors and spend 25 minutes or so chuckling away at my own humorous misfortunes when it comes to cancer care like trampolines or the inevitable joining of the dots from people loving a My English Accent so which soccer team do I support? How exotic. And I confess I have neglected to keep up with the news on Fulham FC over the last few months. If you've listened to any previous podcasts of mine, you'll know it's my go to football club fandom of choice. By the way, did you know that soccer was really developed by someone with the delightfully Dickensian name Ebenezer Cobb Morley? He wrote the first draft of the Laws of the Game in a London pub in the early 1860s. He was also a progressive and radical politician, which should nicely offend friends of Nigel Farage and his public schoolmates. Or B People think I have a perceived South African accent, which leads them to ask who is my favourite Springbok player? Matt Damon? Or Mackie Hendrix? Or or C Do I have a perceived Australian accent? Which leads to requests to explain the differences between American football and Aussie football. Aussie footy, which I confidently and with no expertise whatsoever state is down to the lack of the Aussie's body armour. But here's the question. Why, oh why do people seek to connect me with sport? I'm very, very grateful, please don't get me wrong, but it does truly beg a belief in respect to all of these topics, funny or not. Let me be honest though. Much of the time they are but a moose bouche, invisibility cloaks and no jk, you don't get the rights over those to detract from any fear, pain, terror, depression. This cancer is causing me also. How do I explain this? It's just too obvious. Of course he's laughing. He's dying. So only the odd vignette thrown in unexpectedly catches people off guard as well as myself if I'm being smart at it. Another idea I've been thinking of writing about for this episode Time travel. Seriously, I have thought about an episode on cancer and time travel that would go forward into thinking what society might look like when progressive values truly become embedded in society, as evidenced by the sides of the i5 between LA and SF littered with decaying uber Teslas as everyone drives around in stunning long range Cadillacs and Chevrolets and think that is wild imagination or going backwards. I have got through four paragraphs of writing on when in my life I'd like to travel back to before again. I realize I'm expressing a ghoul like grief for a life clipped short because of cancer, but actually, the one time I would love to step back in time, as it were, is to 1984 or 1985 and the audience at Heaven for Hazeldine's imperial and historic performance of Searchin. So there's that. I also think of those early years as a young adult and how I craved love, not ecstasy. Note the multiple historic references there. I once had a short, very short Facebook exchange about sex with a leading UK activist when I was decidedly an nuclear wintry single. I wrote that I considered the best sex was an expression of intimacy between two term lovers. No it isn't, he replied. It's sex. Good sex at that. To which I said, that doesn't make much sense to me. With one word he dropped the mic with evidently or there is death itself. Now I'm not morbid and I can prove that, because if I pray for anything at all, it is that there isn't a heaven housed by da Vinci veneered self righteous evangelical extremists of all faiths from both classic Newtonian and quantum entanglement perspectives. It doesn't bother me if some of the subatomic particles that currently make my body up end up as door hooks or Venus fly traps. I am actively working on a script for an episode dedicated to death, but it is hard to write, hard to conceive without offending people's other values, beliefs and experiences. And two deaths have happened recently that have rocked me a little bit to the core, one cancer related and one not. It's not my place to talk about them, but I will admit my mental state is a little bit absurd at the moment, somewhat like US foreign policy in the Middle East. Up and down, Don, up and down. However, there are now a whole lot of events that are relevant and that have happened in the last few days. Firstly, last Friday I popped by the Oncology infusion clinic, as you do, for a chemotherapy infusion. I can't quite say that I've settled into the routine that it brings. For example, there is always a rush two days in advance of the treatment, as either Eric or I will remember, just in time, that I have to have a series of laboratory tests done to ensure that I am healthy enough for chemotherapy. And when we go to the infusion clinic in South Sacramento, three times out of four, I'll forget the gorgeous, bright Lululemon bum bag my niece Daisy bought for me. And Daisy, I hope you noticed that I said that correctly. Lululemon bumbag. Hmm. Say that when you're drunk. You may recall that maintenance therapy for me includes a chemo pump lasting 46 hours. The pump itself is yellow and it looks like a lemon, and it needs to sit inside Daisy's bum bag for protection over the 46 hours. At the end of those 46 hours, Eric removes it and the needle from the port inserted under my right breast skin. On this occasion, not only do I remember the Lululemon. Dammit, I blew that. On this occasion, not only do I remember the Lululemon, but I also bring last week's removed lemon to be thrown into the chemo bin. As always, I feel the effects for days afterwards, from painful teeth to itchy skin and fatigue. I'm still getting used to it all, so I can't call it routine at all. I mentioned teeth pain earlier. Up and down, Marianne. Up and down. They have caused a level of pain I have not experienced before, and don't tell my palliative care team, but I've increased my tylenol dose to 1.5 grams. Just as I feel a tingling of the pain coming on, I add the odd gabapentin if it's close in time to the dosing for that. Occasionally I'll even add an oxycodone or two if needed. Takes about 15 minutes to clear the pain, as I say, but my whole head inflames during the pain and treatment, so I have to sit up and not attempt to rest my skull on a pill. So it's Tuesday now. Eric removed the pump on Sunday, and since then, as well as the toothache, I've felt the works. Nausea, fatigue, body aches and something new. Itchy soles of my feet to add to my brittle fingernails. Joy of joys. Yesterday, Monday, I had my three monthly PET scan, which I gotta say I've been freaking out about. I'm always scared of what it will find and I'm equally scared of what it won't find. Now, just a reminder. According to Dr. Google, a PET scan and PET stands for positron emission tomography, is a non invasive 45 to 90 minute nuclear imaging test that uses a small amount of radioactive tracer. What a great name. Radioactive tracer to detect metabolic changes in the tissues in My body. You get injected with the radioactive fluid. You wait 40 or so minutes in a darkened room and then you're walked into the room that houses that huge circular nuclear imaging machine. You get onto the bed, told not to move, and then the bed slowly moves forwards and backwards into that massive circular scan. The fluid spreads through your system and lights up the areas in the body where there are diseased cancerous cells at work. Now, you'll recall that in an earlier episode I reported that the machine fused itself during my first PET scan and I was stuck inside it for 15 minutes before being rescued. Well, this was my third scan and thankfully I wasn't back with the same technician who operated the last two. And who remembers me as the person who single handedly destroyed a million dollar piece of equ on the first attempt. No, this was someone completely new who had no idea of my history. I have an appointment with my oncologist in a week's time to run through the results. So what am I afraid it will find? Over the last few weeks there have been pains in my belly which have been painful, but in ways I've not had before. They're not Crohn's disease pain. Now, Colin, the cecum cancer tumour is located on the right side of my body and the little colon's spread from there into the peritoneum sac that holds all your organs in one place. But I'm feeling spasms, aches and indeed the occasional stabbing pain up the left side of my body. What can this mean? Has the cancer spread over there? Could it be the effects of Crohn's disease, the immune disease I have had since a teenager? But I'm also on the right side itself, feeling deeper pains, particularly now at the base of my spine and coming forward to the front of my belly. What can this be? Has Colin grown? Or is it sciatica, which I need to treat with some participation in a gentle Zumba class? I've also been experiencing wild extremes between being too hot with sweating on my back, on my armpits, on my legs and in the nook and cranny of my kneecaps on the other side to being too cold and needing to wrap up myself in fleeces from head to toe. And both of these conditions can take place in rapid succession, three or four times an hour. My sweating woke me up a few nights ago and I had that age old creeping terror of a first experience of HIV related night sweats, which of course is impossible because I have to remind myself in times like that that I do not have hiv. I have been concerned that I might be overdosing myself with Tylenol. Paracetamol. Paracetamol, depending on where you live. And of course a side effect of this overdose, overuse of Tylenol is extreme temperature swings and particularly sweats. Or could it be my liver? Because that's what's most at risk from regular high doses of acetaminophen. Perhaps my liver is at double risk from metastasis, from the cancer and from the acetaminophen. You know, it's one of the most common drugs, isn't it, acetaminophen. And it's still impossible to say. I don't even want to think about the cancer spreading to my kidneys. It's very rare, but it's exceptionally serious and you may not even know you have it. Maybe some blood in your urine or maybe some pain in your back. Bit like kidney stones if you have ever had them. And I've had two, one on a plane from New York to Tokyo, I can safely say they are the greatest pain a man will go through. But that's for another day. Point is tremors and sharp pains in my back similar to the ones that I had 38,000ft across the Pacific. They're back. So could this be kidney stones? Or is it something else? So I'm really hoping that this one PET scan will reveal what is causing these pains. Or is it all trapped wind? I'm not quite ready to let this go. Not yet. Trapped wind or no. What if the PET scan reveals nothing at all or something? That's hard to explain. I know I am not imagining this discomfort, but it's yet another example of what my counsellor said, of having to expect the unexpected, to live with an ambiguity that could be something or nothing. Of all the life changes that cancer has wrought on me, this really is the hardest to live with. The expectation of experiencing the unexpected that is worth an episode in itself. Except of course, it would all be hypothetical. I would really love to get almost a calendar of my disease progression. When should I expect what? And what should I expect when? What is going to be so difficult for me is making a decision to plan even for the short term future, recognizing that there is every chance I won't be well enough to participate. There's a Human League concert happening in Sacramento. Yes, truly, in June. And featured guests include Alison Moyer and Soft Sell. Now who's going to miss that? Or there's a comedy set by German mother lady Laura Ramoso in October Lectures, classical music concerts online are easier of course, to manage. There is a major health related event at the end of July that, come hell or high water, I do intend to attend. Even if I have the feeling, honestly that it might be my last. I'm damn well going for any longer term planning. Do I dare open my mind? So if the oncologist, having reviewed the PET scan says it's all good news, Colin has only grown a tiny bit, or he shrunk a tiny bit. Nothing to worry about here, couldn't see anything else of any concern, this should be good news. But if Colin grows and the oncologist says it's not an issue, well, how does that work? How can you grow despite treatment and not be a risk? I will have to get clarification, another bullet point to go in my notes. And if that is all it is, it really doesn't reflect how I feel on a daily basis. Am I imagining things? But equally frightening is if he says that Colin, the tumour has grown more than we expected. We noticed what appear to be questionable growths here, here and here, and I want your liver checked out for possible acetaminophen overdosing. Well, what then? Is that what I want to make me happy? How does having the worst possible news represent even the remotest touch of happiness? I say I am at the bottom of the garden with the fairies. With this it's so difficult to make sense of. I want to say I'm fighting this. I'm staying fully hydrated with the help of coconut water, which does the trick and is full of all sorts of electrolyte goodies. I'm trying to eat as healthily as possible. I'm even trying to stay fit, but with deep aching or stabbing pains in my gut. This fighting fit regime consists of ambling to the bottom of the garden, no fairies there, and checking on the state of my rosemary bushes, which really aren't doing at all well. Although those pesky Californian poppies that pop up everywhere, bringing their glorious deep yellow flowers to enhance the rich green foliage of local shrubs and plants, well, they're doing really well. It hurts the base of my spine as I bend down to pick up weeds and remove them and put them in the composter. I confess I say a little prayer and apologize for derooting them when I do this, as weeds are only plants we humans don't want to see. I think there is a Margaret Atwood quote to that effect somewhere. I'll remind myself to check for it when I next reread the year of the Flood and share it with you. Now, this is no bucket list by any means, but other things I want to do in the medium term while I can include a Club Med holiday in the Mediterranean Club. Firstly, there is something so much more classy about European excess than its American equivalent. I went on a Club Med to Marrakech about 25 years ago. There was so much food, but oh my, was it good. Oh my. Now that would not happen at the American equivalent because there might be more quantity of food, sure, but the quality and the quality of preparation is so inferior it might as well be silage. A Club Med might be a good way of tempting my chemo torn appetite back into normal operation. And I can sit by the pool listening to my Euro hits. I'm not allowed to sunbathe again because of the chemo. I don't feel I want Eric and I to go solo, like renting an Airbnb, booking our own planes and trains and foraging for our own local produce, and getting knackered and irritable in the process. I want it all taken care of. I wonder if there are Club Meds with availability in Spain. That would come first. If not, I'd happily accept Croatia, Cyprus or even Libya if they exist there. I know there are Club Meds in the Caribbean, but I really want it to be in the Mediterranean so I can proudly show off my European convictions. And if you are watching this, there's my European flag come hoodie. I think of breakfast. I want to be indulged with fresh, fluffy scrambled eggs, not strange hunks of yellow mash sitting in tepid water that you you get over here. Wow. I'm delving into a touch of anti Americanism. I don't know what has got into me, although from a global geopolitical perspective, that's perfectly understandable currently. And that's the trouble when you end up with an elected leader like Trump or indeed Netanyahu, it's all or nothing. How can I love the USA while being revolted by every single little bit of executive action that extrudes from that orange Oval Office? I'm having an extended chemo fog moment in that I'm sure it was Will Hutton, the British journalist who wrote a book, the name of which I can't recall, but which influenced me deeply in that he showed in his mind categorically and to me very convincingly, how the U.S. constitution was born out of, and would correct much of the limited UK constitution. And I put constitution in the UK context in quotation marks. Because the UK doesn't really have one, but rather a range of strange laws, precedents and long accepted behavior that has served the Conservative Party in particular exceptionally well. And I use this description for two reasons. To demonstrate firstly, how frustrating chemo brain fog is, and secondly, to show how pro and how proud an American I am. In fact. Well, let's hope that stops them from kicking me out of the country. Except, and I am theoretically really uncomfortable with this, the nuclear medicine technician posted the results of the PET scan on the test section of my online patient portal this morning. To the lay audience like me, oncology has no Rosetta Stone. So with the help of Dr. Google again I managed to guess the following I think the down news first, Collins SUV has reduced from 5.6 to 5.3. Now you know something. Down I think in this instance is good news. It's not a massive reduction, but it is the first time that Collins SUV has reduced even by a little bit. Suv. Now we aren't talking American city cars here. It is a term of measurement standardized uptake value. No shit there Sherlock. Indicating how much radioactive tracer. Again, love that phrase. A tumour or a lesion has absorbed. A higher SUV generally signifies faster glucose metabolism, which is probably a posh way of saying more aggressive cancer. Now the up news, which might be bad news or it might be nothing at all, but the thyroid gland has an SUV of 6.5, up slightly from 6.4, and it's a finding that requires further clinical investigation to say whether this is of any concern, whether the tumor is benign or malignant. If it is benign, it could be a symptom of something sophisticated. That's called Hashimoto's thyroiditis, which if you are of a certain age and a certain interest in electronic dance music, could easily be confused for one of Yellow Magic Orchestra's greatest hits. But no, it's the name of the Japanese doctor who discovered it in 1912. Or of course the tumor could be malignant. I will have to make sure that this is also at the top of my bullet points to raise with the oncologist next week. Because as I've said already today, though rare thyroid tumors can spread from the cecum, so presumably we will need to check this out. I'll let you know. And then of course there's this whole jumple of up and down jog up and down, which could be Crohn's related inflammation and deflammation. And then there's the stuff that I can't even pronounce, let alone Google. So I will have to leave that to the oncologist, but I'll make a recording again after I speak to them to share any clarifications they give me to these questions. Oh, Plumley, look at you. Regular podcasting again. How thoroughly modern and professional. Yeah, well, we'll see about that. So, up and down, Jock. Up and down. Well, that's it for this episode. If you or anyone you know is going through colorectal cancer, there is an online peer support group I found very helpful called Colontown. I'll put the links in the notes. Actually, I'm not ready to end today's episode because, as I mentioned earlier, two people I know have been lost, one to cancer. Now, anyone working, living and breathing the AIDS response, for example. Although I'm sure the same is true for cancer, for hospice care. All of us can attest, like Marianne and myself, that grief really is not about the person you've lost. If they were in any kind of pain, that pain is gone. So that's good. Grief really is about an emotionally intelligent understanding of what support, if any, spouses, families, lovers and friends need at this time. Their subatomic particles still make up the person with a heart and a soul that they are, and they come first. And I'll check with their loved ones. If it's okay with their loved ones, I'll post on my Facebook and substack any public information they don't mind sharing. So with that, thanks again for being on this journey with me. Up and down, Jock. Up and down. And here's to not being excessively fidgety in the coming week as I wait for the oncologist.