From now on I’ll just be posting if and when there’s significant change to any of the parameters in my medical report from Dr P. The one just gone contained the usual suspects: an increase in my PSA, a report from my last scans showing no additional activity (just the usual chuntering on), and him telling me how well I looked. From here on, if there is no post, assume that, if it’s not exactly good news, it’ll be the best there can be.

Those who know me, know I have a birthday very late in the year. I am pretty pleased to see this particular one coming around. I need nothing for what I’m planning for that day, which will be as minimal as can be. Planning is not exactly one of my strengths, but I have so far poked my head above the parapet to have looked as far ahead as Christmas. Regardless what this particular day means to you, may you all have a good one.

This repost contains only minor changes — no need to re-read

This post is written from frustration and anger toward the prevalence of casual, verbal violence toward women, in the everyday speech of men. It’s based also on my belief that men talking about violence toward women normalizes such things. In the light of figures showing that more than one woman a fortnight has died in intimate partner (or “domestic”) violence, I am shocked that men can go on using this as a metaphor and not make the connection with its being carried out.

I found it shocking as well that this was happening in my exercise group. (I’ve changed the names.) This group is made up of prostate cancer patients. Each of us has a program comprising cardio and resistance exercises and balance training. Among the cardio exercises available is boxing; one patient can box with the exercise physiologist for about five minutes. (The EPs are mostly female, as was the case this time.) When requesting some boxing, Stanley said (of Mike), “Mike said he’s ready to beat the shit out of you”. The EP gently reproached Stanley for his language, in the context of domestic violence/intimate partner violence . (The boxing was carried out without incident.)

After class, most of us (including Mike and Stanley) went to lunch. Waiting for our toasties, Mike referred to a couple of female film characters, one being Nurse Ratched from One Flew Over the Cuckoo’s Nest, and another whose name I didn’t catch. Mike was riffing a bit on what he regards as these characters’ ability to avoid answering questions being put to them, thus negating the questioner while remaining icily pleasant. He remarked “You feel like beating the crap out of them”. At a break in the conversation I asked him whether he felt that women who behaved like Nurse Ratched deserved physical violence. He said (words to this effect) “No, you just feel like doing it”.

I was pretty surprised, to put it mildly, that he could express himself in this way after the pre-boxing incident. Both he and Stanley are married and fathers of daughters; the latter particularly dotes on his grand-daughter. Neither of these men, in other words, is likely to carry out violence against their spouses. But (and it’s a big but) I believe that the prevalence of expressions like Mike’s and Stanley’s contribute to a culture in which violence against women by men is seen as acceptable; something all men secretly feel like resorting to at times: unacceptable, for sure, but understandable.

Of course this is a belief on my part, not something I can prove. But we have seen recently a lot of analysis of Donald Trump’s inflammatory rhetoric, and concerns that this is providing justification to his supporters to act violently, should he not be re-elected. (An interesting Washington Post article explores these concerns on the part of Democrats and Republicans.) If Trump is adding to the threat of civic violence by his statements, why shouldn’t this work in the personal sphere? Are men who say things like “You feel like beating the crap out of them” (referring to women) blurring the line between fantasy and reality?

I believe there’s enough of a risk of this happening for men to refrain from expressing themselves in this way. I believe further it’s important to challenge and call out men who talk about acting violently toward women, regardless of whether they are our relatives, friends, or exercise buddies.

My bad, I forgot to post my last consultation with Dr P. In my defence, the difference between the previous set of results and those obtained last time was small. I was also feeling fine (which continues). Thus there wasn’t much to be either excited or depressed about. That could be said about the appointment we had with Dr P on Wednesday 13th June. The headline: the PSA is actually heading south, down to 475 from 491. The degree of decline is obviously modest, but anything in that direction is welcome. Following this consult, I had my chemo infusion, which went well as usual.

The main novelty of the last few weeks was my belated entry into the world of music downloads. I was initially lured by a $2 download, from a site called Classic Select World, of the complete Beethoven symphonies. This cycle dates from the 1980s, and is played by the London Symphony Orchestra conducted by Wyn Morris. I had only come across this conductor’s work in a little-known but exquisite piece by Mahler called “Blumine”. This had originally been intended by Mahler to be included in his Symphony no. 1, “Titan”. (NOT “The Titan”, as ABC Classic insists on announcing it.) Anyway, the composer decided to drop the piece from the final edition of the symphony, leaving it known mostly by Mahler tragics.

Wyn Morris’ Beethoven cycle is a total bargain at this nominal price, as long as you can divorce yourself from the CD format. OK, these are only MP3 files, but for $2, but to me, they sound pretty darn good! Downloading and unzipping the files was easy, but how to get them playing on the stereo was less obvious. Anyway, I figured out a way to copy them from the download folder in my Chromebook onto a thumb drive. (Most amplifiers have a USB drive suitable for this purpose.) Classic Select World has some other bargain boxes at this derisory price, a few of which I have also purchased and been playing back. If anyone wishes to test the waters for nix, they has a free weekly download — just have a click around their site. (Given the sums involved, it will come as no surprise to hear that Classic Select World has not paid me for this endorsement.)

The title of my post has been borrowed from the title that Proust intended to give his novel cycle. Never one to discard a good phrase, he went on to use it for part of volume 4, Sodom and Gomorrah. I thought I would borrow it for an update on how I am going after two chemo infusions, which is pretty well.

We saw Dr P on Wednesday. The PSA has risen, but only by a tiny amount relative to the previous score — I made a rough calculation of 10%. So it appears to be plateauing, a sign that the cabazitaxel is working. (Further evidence for this comes from the absence of pain in the lumbar and thoracic areas, allowing me to return to small tasks like grating an apple and running the wheely bins up and down the driveway.) After the consult, my beloved and I headed back to take a lift down to our separate destinations. All sounds very romantic! Alas, I was just continuing down to car park level B2, while she was alighting on the ground floor to go back to the car. Why the difference? There is a subterranean pathway in the car park leading to the westerly part of Epworth Eastern, where the day oncology centre is situated, itself where my second chemo infusion is to take place. (The building containing Dr P’s office was built later; for some reason, it isn’t possible to pass between them by a less convoluted method.)

Once the subterranean whatnots were negotiated, the actual infusion passed quite pleasantly. I have spent enough time in hospitals by now to feel quite at home there. The environment is warm; one is brought tea or coffee (which is actually quite good) and sandwiches. The seats are multi adjustable, good for me as I can have my calves raised to stop them swelling. The insertion of the cannula is not painful; the nurses have all done it many times. I am there for about an hour; I just sit there, read a book, and zone out. (I could alternatively listen to music via my earbuds, linked by Bluetooth to my phone. Last time, however, my phone battery was only at 27%, and I needed to arrange my lift home.)

For this, my second treatment, I had few side effects. Fortunately this is not my first rodeo, having had chemo about five years ago. That knocked me around a bit more, but not for long. I was fairly cavalier that time, travelling by train into the city to get to my poetry group. Now I am more conscious of needing to stay away from groups. Chemo is definitely something that compromises the immune system.

Let’s get the prostate stuff over with. Last week’s consult with Dr P was almost identical with the previous one, except for another rise in the PSA — up to 200 this time. Fortunately, I’m pretty inured to these kinds of figures, particularly when, as this time, Dr P said he was happy with how I’m going. I’ve been having difficulty with full body scans, insofar as the radiation therapist has to tie a velcro strap around my ankles to stop me wriggling around (thus blurring the scan). By the time the scan head gets to my ankles and feet, I’m in fairly decent pain from the sciatica. I’d reported this to Dr P, and he said he’d give me a prescription for some opioids to help with the pain. I thought he’d just give me a script for one box, but he wrote on for about 10-12 boxes! (No-one need be concerned that I’ll be tossing them down like lollies. Some time ago I read a book about Oxycontin and the dreadful legacy of addiction that that left behind. We also saw and enjoyed Addiction on one of the streaming services. So I’m well aware of the potential for addiction from this drug. But for pain relief, opiods leave things like Panadol in the dust.)

I gave these a bit of hiding, though, over the new year. I got a strain in the sacroiliac region on 23 December — just as we were about to leave for the airport to pick up my sister-in-law, who was having Christmas with us. I had been about to pick up an (empty) plastic Esky the way I’d been taught, i.e. bending my knees and keeping the back straight. Unfortunately the Esky was on my right hand side, not straight ahead. Anyway, this resulted in an almighty pain, recovery from which required lying down for several hours while my beloved continued to the airport. I was up and walking around about five hours later, albeit in a fashion that resembled Dr Frankenstein’s monster.

The happy pills have also been part of the treatment regimen I have been put on by my GP for a spasm in one of the lumbar spine muscles I’ve been having for a week now. This also gives me pretty decent pain when getting up or sitting down — just at various angles. My GP gave me two types of opioids and Panadeine Forte, all of which make me pleasantly woozy, but are only masking the pain. I’ve also had some adjustment by a chiropractor, who said she thought I might need another session (truer words were never spoke — I’m seeing her tomorrow afternoon). If that is unsuccessful I’ll try some needling therapy, either by an acupuncturist, or dry needling.

This pain is pretty disabling in terms of doing any cooking, or basically anything that involves lifting. It’s remarkable how many things, such as appliances, are stored in low cupboards. Fortunately my beloved is working from home this week. (One of her friends went down with Covid last week, so my beloved and I have been isolating for a few days. We both took a RAT test which came up negative, though, so that is one bullet we may have dodged!) My beloved has stepped nobly, as ever, into the breach of the household stuff. I have been supporting insofar as I’m able, including setting up a Click and Collect for the groceries.

One takeout from these two incidents for me is that my back has become rather fragile. I’ve become like a vintage car which requires consistent maintenance. To that end I’ll try seeing the chiropractor and massage therapist alternately each month. Another is that GPs in general don’t really know that much about the workings of the musculoskeletal system, and often only have time to write you a prescription for an analgesic or (if you’re lucky) an opioid. So one must find a practitioner in that realm of medicine deemed “complementary”, e.g. an exercise physiologist, chiropractor, or acupuncturist. (Caveat emptor, and all that, but that applies just as much to Western medical practitioners.)

I had my usual three monthly entire body bone scan and CT thorax/abdomen/pelvis scan on Monday. Following this, we saw Dr P yesterday. He led with the scan results, so I will follow suit with some highlights (so to speak):

• The conclusion for the former scan was “findings in keeping with moderately indolent disease”. When I asked for a translation of this, Dr P said “stable”.
• For the latter: “No features to indicate underlying soft tissue metastatic disease at any level”. The fact that there is no visceral metastatic disease (i.e. no lymph nodes or organs are affected) was further good news.

The PSA was a rather dizzying 63. However, Dr P said he thought this had probably increased to this extent because of the radiation treatment I had just had at Peter Mac. He said also he could see I was a bit sub-par, and that I would start feeling better about 6-8 weeks after the last treatment. (He relies much less on the PSA metric than on his assessment of how I am looking and feeling overall. )

The news was a mixture of encouraging and daunting. Looking at the positives, however, Dr P didn’t order me onto another round of chemo. Prior to the appointment, we both expected this. That he kept that up his sleeve this time was a relief. I am already feeling less tired from the radiation treatment (i.e. not sleeping half the day), so maybe the recovery is starting a bit earlier than forecast. My left eye (the one which was treated) is looking better, with less bloody and scummy stuff weeping out. The area underneath the eye in particular is much less red.

I am going into Peter Mac tomorrow morning to touch base with my radiation oncologist, Dr M. My plan is to continue seeing her each week, as she has requested, until the left eye has settled down. At that point I will transfer the oversight of the Merkel carcinoma to Dr P (being something with which he is familiar.) Not having to trek out to Parkville will be a relief.

The sciatica has been quite troublesome. I have had to supplement Lyrica (the medication prescribed for it by my GP, Dr T) with anti-inflammatories. We went to Camberwell earlier this afternoon to see her about this and a few other things. She authorised a double dose of Lyrica (150 mg twice a day), and gave me a prescription for this, and others for a few more meds that have been running a bit low.

Early this afternoon I came home from Peter Mac with my beloved after about 50 radiation sessions there. (For the middle 4 weeks or so I was having two sessions a day, five days a week. At the beginning, and for the last 10 days or so, only one.) On top of these I had at least 15 consults ancillary to the radiation proper, before and during the sessions. So getting up to 70 appointments all up. The main side effects of all this have been fatigue, a rather dry mouth, and some blurry vision from the left eye, especially when it is covered over with a whitish discharge. We have been assured by multiple folk that these things are quite normal, and will take a few weeks to settle down. Among these is my radiation oncologist, Dr M, who now wants to see me each week to, as she put it, keep an eye on things. (I see what you did there, Doctor!)

Dr M had originally wanted me to have 30 sessions to the eyelid as well. After 25, I had terrific pain to the eye (as well as looking as if I’d had a good hiding) and said “No more”. (I had to play the “I’m the patient” card with the registrar, who was gung-ho for me to continue. Dr M was far more amenable to my stopping; she said 30 was probably “a bit ambitious”.) Anyway, today’s was the last scheduled radiation session — just to the head and neck, by far the less intrusive of the two treatment sites. So next week, I resume the usual prostate cancer scans, treatments, and consults with the ever so slightly miffed Dr P. The latter, the last time I saw him, said (referring to the radiation treatment) “I can’t do anything with you while you’re having that!”. Well, Dr P, I’m all yours.

For most of September I had ambulance transport into Peter Mac. This was also supposed to happen this morning, but they never showed. PM Patient Transport assured me they could see that the vehicle was on its way — first 5 minutes away, then 20. So we pulled the pin on the ambulance, and my beloved drove me along the by-now familiar route to Parkville.

Being a nosy old bugger, I have found it fascinating to talk to the 20 or so ambos who drove me out and back. On this evidence, there is quite a spread of attitudes towards the job and degrees of burnout. On average, burnout is supposed to happen after seven years. However, some ambos I spoke to have been doing it for 20-30 years or even longer. Some never want to stop; a few others are counting down until retirement age. They were almost all pretty chatty, especially about the job, but many topics were ventilated — some quite personal — during our trips into and from Parkville.

There is quite a number of ambos about; one mentioned that Ambulance Victoria had around 7,000 drivers. This seems an awful lot. But ambulance vehicles come in different shapes and sizes. Mostly I was driven in the seven-seater Honda SUVs beloved of large families — these are reserved for passenger transport. Drivers of these vehicles often specialise in this. However, their numbers are also supplemented from the pool of full-size ambo drivers (those “on the stretchers”, as the jargon goes) as the need requires. Paramedics who generally drive these vehicles welcome the chance to have a more cruisy day on passenger transport. Shuttling patients around also doesn’t require them to make quick medical assessments of sick people; instead they get to chat to people unlikely to be affected by drugs or dementia, and who are thus less prone to abuse or assault them. (The latter happened to quite a few of the ambos I asked about this.)

There is also a spectrum of training competencies. At the bottom of the hierarchy are those only trained for passenger transport; they can administer oxygen and defibrillators, but no drugs. (A lot of these folk are doing this as a second career; some were made redundant, others felt like a change.) Above them are full-blown paramedics; this group subdivides into junior and senior. I asked one young woman, who had been an ambo for four years, whether she still got sent out with a senior partner. She replied that she was now sent out with the new graduates — ambo talk for the young and wet behind the ears — which she thought was crazy.

Having spent most of my library career in post-secondary and tertiary education, I was interested in how ambos are trained. Originally they did a diploma course, several months in duration. This alternated study of emergency medicine with being sent out on the stretchers with a senior ambo. That sounded like a darned good way to structure ambo training to me; most drivers I spoke to agreed. Unfortunately credentialism struck, and the diploma was “upgraded” to a degree course taking longer and involving more theory. Students had placements in which to acquire direct experience. But just how much experience they acquired depended on where they were placed. One young graduate I spoke to had served her placement in a regional centre, where the ambulance shifts were pretty quiet. It is therefore possible to emerge from a degree course without having treated many patients. Such graduates are pretty shell-shocked when they are sent on a shift to Collingwood, St Kilda, or the CBD on a Saturday night. The consensus, regardless of how individual drivers had been trained, was that the old ways were indeed better.

There is a bit to catch people up on, so I will just put it all in point form. (I have condensed a lot of medical appointments and put things out of strict chronological order. Trust me on this.)

First, the Merkel carcinoma.

• About a fortnight ago I had an operation to remove a growth on my upper left eyelid. This was picked up in my annual eye check at OPSM, who referred me to a local opthalmologist. He (Dr L) removed the growth and sent it to be biopsied as normal.
• This turned out to be a somewhat unusual cancer called a Merkel carcinoma. Merkel is a quite aggressive cancer, which can spread widely under the skin. Like other aggressive cancers, it can infect the lymph nodes. On the positive side, it responds well to radiation treatment. Dr L referred me to the Peter MacCallum Cancer Centre for further treatment.
• My beloved and I spent a couple of days there last week. In these appointments I had a PET scan, then met a radiation oncologist and a couple of plastic surgeons. (The PET scan showed that the Merkel had not spread to the lymph nodes in other parts of my body.)
• The radiation oncologist was there to talk me through what radiation treatment would look like. In short:
  • I will be having 30 sessions of radiation over six weeks.
  • Before this starts, I will need to be “marked up” by having a lead shield custom made for the contours of my old dial. This will ensure that only the appropriate areas are irradiated.
  • To the same end, a little metal disc like a contact lens will be placed over the cornea of the left eye, underneath the upper lid.
  • Fortunately, each session of RT will only take 15 minutes or so.
  • The markup session was yesterday. The team working on me took great pains to shape the lead shield to fit me closely. I had some numbing eye drops applied before they put the metal shield in place over the cornea. The discomfort of this was not nearly as bad as I had thought.
  • Apparently I can expect some redness and soreness of the upper lid as the treatment progresses. I will also lose the left eyebrow. (This is OK; the one I can raise is the right one!)
• The plastic surgeons were there to talk me through a procedure called a sentinel lymph node biopsy, for which I am booked in on Monday.
  • This is mostly a diagnostic procedure which will reveal whether the Merkel has spread to any of the lymph nodes in the head or neck. It does so by injecting a couple of radioactive dyes at the area where the original surgery was performed.
  • The procedure does not do anything to “cure” the cancer: it merely shows to which lymph nodes it might have spread. This is an important thing, however, because the radiation folk will need this information to proceed to treat any affected lymph nodes. (As I think of it: they can’t shoot at what they can’t see!)
  • SLNB also has the benefit of allowing any cancerous areas to be detected while they are still small. Removal of small cancers is easier than if they have been allowed to grow (and spread).
  • I asked the radiation oncologist why I was having the markup session yesterday and the SLNB on Monday. Shouldn’t they be in the other way around? She said that normally this would be the case. In my case, however, they were regarding the treatment of the lesion on my upper left eyelid, and treatment of any affected lymph nodes, as separate procedures. The markup was only applying to the former.
• The Peter Mac’s location in the Melbourne CBD makes getting to all these appointments a bit of a bore. (It does have a Box Hill campus, but they can’t provide the treatment I will require.) Driving oneself is not recommended because of the effect on the vision of the numbing eye drops which the radiation sessions require. Fortunately, however, my beloved is stalwartly driving me to them all. She will pack her laptop and work away on the free Peter Mac wifi.
• Apart from its location, I am greatly fortunate in having been referred to the Peter Mac, unusually (and fortunately) a public institution. Consequently all this treatment and surgery is not going to cost us a cent. The staff there are quite wonderful: it has pretty good coffee too! Out taxes at work.

OK, onto the prostate cancer.

• The PSA has gone up to 33, but only by one. I am counting this as a win! (A bit like the England cricket team feeling as if they won the first Ashes test.)
• Dr P had been told all about the Merkel. He is happy to hold off on any change to treatment for me (i.e. chemo) until after the radiation. (Not that I seem to need that — see below). This avoids the WICOS problem that I read about in one of Atul Gawande’s books. This initialism stands for “Who’s in charge of the ship?”: a question that can arise when a patient is being treated by several specialists.
• Incidentally, Dr P said he has one of the biggest Merkel practices in Melbourne. So when I have worked through the treatment at Peter Mac, I could come to him for that as well (if I wanted to). However, he is going away for five weeks, and we need to get onto the Merkel PDQ. So we decided to stick with Peter Mac.
• Later that day I had a Zolodex implant, which went well.
• Goddam it, I’ve forgotten how to mark the following up as a paragraph! This new WordPress editor gives me the Jimmies. You’ll just have to work it out.

• In the morning before I saw Dr P, I saw a gastroenterologist to whom he had referred me, Dr B.
• In a phone consult I had explained I was suffering from shortness of breath and dizziness on getting up. He asked me to measure my blood pressure sitting down, then standing up.
• Before the in-person consult, I had been increasing my consumption of iron rich foods as much as possible: two eggs for breakfast, meat sandwich for lunch, and so on. I had also doubled my iron supplement to two Ferrograd-C tablets per day — although only after the blood test which he had ordered for me. (The extra dietary iron may not fix the deficiency, but I figured it couldn’t hurt.)
• I gave him a couple of sitting-to-standing readings in our in-person consult. These revealed quite a drop between the two states — hence the dizziness. (He wasn’t interested in the BP after I had been standing for ten minutes or so.) Normally the body compensates for the change in states; however,for some reason this wasn’t happening in my case.
• In the consult Dr B said my iron level was “OK at present”. (Maybe the eggs and meat had been doing something after all!) He thought the Ferrograd-C contained too much iron for the body to assimilate, and suggested I drop the dosage to one every other day.
• Fortunately, he didn’t suggest a colonoscopy! (I had had three “scopes” about five years ago, when the low iron was first picked up.) He did suggest that I have a heart ultrasound in case there had been any partial heart failure. After all the dust clears from the Merkel, I will investigate this.
• I am generally feeling better and getting less puffed after walking up an incline. So I am planning to continue with the iron-rich diet.
• That’s your blooming lot! Comments not questions, please.