Scratchings

This is the first in an irregular series of stuff that has been disinterred from old notebooks; some quotations, some drafts of poems. All are posted as I found them.

Humankind, fleet of life like tree leaves, unsubstantial as shadows, weak creatures of clay, wingless, ephemeral, sorrow worn, and dreamlike.

(Aristophanes, quoted by Raymond Moody, Paranormal.)

Down, down

We went to see Dr P today, and the news continued to be good: the PSA is now 1.07, down from 3.2. The good doctor is confident he can get it below zero. I know I’m not supposed to be focusing too much on the PSA. But Dr P has led with it the last couple of consults. Maybe he does this because he knows we get concerned about it if it rises. Also, let’s face it, medicos, like everyone else, like to focus on good news — something with which to cheer the patients up. Whichever it is, I’ll take it anyway! So the Enzalutamide continues be successful, while at the same time not incurring any very objectionable side effects. (The exception to this is hot flushes, which are definitely on the increase. I don’t mind these, however, because I feel them to be a sign that the medication is doing what it’s supposed to do, i.e. starving the cancer of androgen.)

While I was just having the Zolodex, I used to see Dr P every six weeks. Now that I am having the Enzalutamide to my regimen, I need to see him every four weeks. This is to do with the Enza being dispensed in batches of 112 — a strange number, on the face of it. However, the logic is: I take four of these a day. Each lot of 112 therefore cunningly lasts me 28 days. (Trust me on this.) Dr P wants to see me after each batch, therefore every four weeks. I continue to have a Zolodex implant every 12 weeks. Each of these will now occur following every third consult with Dr P (instead of every second consult, as has been the case until now). Alles klar? I get most of the charge for each consult back from Medicare anyway, so having them more frequently is not a financial impost.

Coincidentally, today was also a Zolodex day. I was actually a bit early for this appointment. The nurse who was supposed to administer it was busy, so one of her colleagues took over. There was a slight confusion initially, on my part, over terminology. Zolodex had always been referred to previously as an implant; it is about the size of a grain of rice, and is placed just under the skin of the abdomen with a fair size syringe. This afternoon, though, the nurse asked something to the effect of “Which side would you like your injection on”? When I heard the word “injection” I automatically thought it would be something going into the vein at the wrist, so started rolling up my sleeve. Then I remembered it was an implant, and said this to the nurse. She said “Oh, I’ll go and get the box” (again, words to this effect), and went to fetch the relevant documentation.

At this point I should explain that each Zolodex implant goes into a different side of the abdomen to the previous one. Whichever side is used each time goes into the clinical record. Nursing staff avoid putting the implant into the same side twice in a row to reduce bruising, I think. However, I wasn’t worried about getting the wrong stuff — each dose is checked by another nurse before it is administered. (I know because, as always, they did this in front of me.) The patient is always asked their name and date of birth as well, to make sure the correct medication goes into the correct person. There was just a moment of being at cross purposes because the nurse said “injection”, not “implant”, sending me momentarily off down the wrong rabbit hole. We had a joke about how she was just seeing if I was paying attention (like Captain Mainwaring in Dad’s Army.) For chemo patients and those having CRT scans, an injection means a cannula in the wrist. (Yeah, OK, I suppose technically an implant is a type of injection. Please don’t correct me if I’m wrong about this! When I hear the word “culture” I reach for my Browning!)

Better news

We went along to see Dr P this afternoon to check how the Enzalutamide is going. He had some encouraging results from my last blood test. After two weeks the PSA has gone down from 7.2 to 3.2, a drop of 55% by my arithmetic. This has been accompanied by absolutely zero side effects. (I was supplied with a fancy little diary in which to record does times, dates, and side effects. After the first one, I had nothing to record.)

I will have my next Zolodex as scheduled on 1 September. Fingers crossed we can get away for a two-night break in a week or so (within Victoria, obvs). The arrangements are all made, but all of course is contingent on no more mystery cases, or people not being stupid. As I saw in an article somewhere or other — it is all down to the single males. (Apparently this is the the group most likely to party, not observe social distancing regulations, and thus be COVID spreaders.)

To be watchful of single males is also a maxim that everyone who learns German comes across early on. The masculine singular form of articles in the more exotic German cases (accusative, dative and genitive) do tend to be the most at variance with the plain old nominative forms. Crazily, this complexity is a reassuring thing into which to immerse myself. I’ve never been a crossword person — they just don’t grab me — but I imagine the feeling of finding the answers to a puzzle is similar.

Extra treatment

A week ago I had a CT and a bone scan, followed a couple of days later by the usual blood test. (I had to leave a gap between them because one of the scans involved being injected with a radioactive tracer dye. This dye can affect a blood test if the latter comes straight after.) This afternoon we saw Dr P to see what all these tests revealed.

The PSA has continued to creep up — only about 0.7 from the previous result, however. The scans revealed a few new spots, something of more consequence. Fortunately, however, these are all in bone, something that is greatly preferable to visceral metastases. (The phrase used in the findings of the scan was “mild progression of bony metastatic disease”.)

Dr P said he thought it was time for an additional treatment, enzalutamide. (The link points to a post in the Harvard Health blog which gives a bit of context about this type of drug.) I had heard of enzalutamide, and know a few guys who are on it. Dr P is confident I will tolerate this treatment well, and that he can get my PSA down to zero on it. (The last time he predicted this, it came about.)

Obviously having new spots isn’t ideal. However, Dr P emphasised that the new ones are minor, and that I’m not (as he put it) “lighting up like a Christmas tree” in the scans. We are both relieved to be moving to an additional treatment. I will continue with the Zolodex until further notice; the next implant for this will take place in 6 weeks. (I have actually been on Zolodex for almost three years, an unusually long time. Zolodex is an androgen deprivation treatment — see another link from the same source for more information.) I will see Dr P in a fortnight so he can see how I am going with the new drug. All going well, we will revert to our usual 6 weekly consult. Enzalutamide is on the PBS, so it should not cost much.

Pharmacists don’t tend to carry enzalutamide, so we had to order it, but it will be availabIe tomorrow. I will obviously just have to try it and see how I tolerate it.

Less good news

I have been procrastinating about writing this, so I am just going to get it over with. We saw Phillip P on Wednesday 9th (about 8 days after my appointment with Pat B). Unfortunately the “gains” that Pat reported, in terms of a reduction in PSA score, have entirely been lost. The score that we got from Phillip was 6.5, which is back to where it had been before the radiation treatment.

Phillip made several points about this. (Sorry, I have forgotten how to do numbered lists in this infuriating blog editor.) First, he found the increase “not upsetting”, and he hoped we were not perturbed by it. Second, he understood also that people made a fetish (my word) of the PSA score. However, the metric that he is focused on is the doubling rate, i.e. the time interval in which the PSA score doubles. A doubling rate of 6-8 weeks would cause him concern, but he feels I am a long way off that. Third, 90% of his consultation time is spent reassuring patients and their carers about PSA scores. So he gets that people find these increases worrying. (He was at pains not to ridicule or downplay our concern.) But he would like us to look, not just at the quantum of the score, but at its rate of progression. Fourth, he has many other treatments up his sleeve.

As to when it comes time for me to move to the next treatment, as he has said previously, Phillip wants to keep me on Zolodex for as long as possible. Let’s call the its successor “Treatment 2”. Say Treatment 2 has an estimated efficacy of a year. If I go onto it now, I will get a year out of it. If I go onto it in six months, I will get eighteen months out of it. So that is why he wants to defer Treatment 2, and its heirs and successors, for as long as possible. (Phillip has said to me before quite bluntly, that the fewer treatments I have, the better.) Treatment 2 will be deployed at a rapid rise in my PSA. But we ain’t there yet.

I was due for another Zolodex implant after the consult with Phillip, which I had without incident. I will go on having these every three months until I move to another treatment. I will continue seeing Phillip every 6 weeks, and having a CT whole body scan every three months. (The next one of these is booked in for 12 July.) So I remain under close surveillance.

It took us a while to digest this news. On hearing it, and the rest of that day, we both felt a bit stunned. What made me feel better, actually, was doing some German homework. Everyone deals with adversity in their own way, and this is mine. We both felt more positive the next day, having had some time to get a better grip on the situation.

It was obviously disappointing that the radiation treatment didn’t have more effect. However, Phillip has many arrows left in his quiver, and we are confident that he will deploy these as the situation dictates. I am still feeling fine, exercising, doing stuff on the home front, and all the other things I have been doing. So there are a lot of positives to focus on — take it from me, we are doing just that! To this end, I would also like to maintain the moratorium on questions. I say this for two reasons. One, I just don’t have any more information to add to what I have written above. Two, I don’t want to give the situation more mental space than it already occupies; we don’t want to delve into it further.

Good news story

We saw Pat B, the radiation oncologist, this morning. The news was good: the PSA has gone down from 6.5 to 5.1. This may not seem a large reduction, but it is more than 20% (relative to the previous score). Pat said that the radiation treatment will continue to have an effect for 6 to 12 months. Therefore, assuming that the cancer doesn’t start behaving aggressively again, the PSA should continue to decline.

The radiation treatment I had after Easter was focused solely on the metastasis on the sternum. The rationale for this was that this spot was identified from the CT scans as dominant (i.e. having “progressed”, which I guess is a nice way to say “grown”). Apparently there is a lot of research which indicates the value of just treating these dominant spots. Each spot or cancer site can be regarded as having its own population. The population of a spot that has become dominant has figured out a way to resist the Zolodex treatment. The idea is to stop this population from colonising other spots.

The Zolodex treatment continues to keep the other spots quiet, and I will continue with this. (I am due for the next implant on 9 June.) I will also continue having a CT scan every three months. These will identify any other spots that might become dominant. Phillip P will remain my medical oncologist; I will go on seeing him every 6 weeks. Pat B is my radiation oncologist; he said I didn’t need to continue seeing him as well as Phillip. Pat will be available, however, to be brought in again should that be appropriate. So it is good to have a team approach to my treatment.

I have explained how the radiation treatment has worked as best I can from the notes I took at the consultation this morning. I appreciate everyone’s interest and concern. Please bear in mind, however, I neither have special knowledge of oncology, nor do I have anything to add to the explanation I have given above. If people have questions about this treatment, there is a lot of information available from free and reliable sources. (I list some of these under Resources in the blog sidebar.) If I received questions about the treatment, I would just be consulting these sources. It has been a worrying six weeks for us since the radiation treatment finished. I would quite like to have a break from thinking about prostate cancer for a bit, and enjoy this little bit of medical sunshine.

Last home

Vignettes of this place

flit past the window:

huge deciduous trees

look benignly

over emerald parks.

The brassy chords of summer

resolve to subtle rain

luminous grey skies

pianissimo in B flat major.

After a while

another tram will glide past

shrieking around corners

like an electric whale

seeking its pod.


Melburnians move

between circles,

dress in layers;

rendezvous under

the Flinders Street clocks.

When you do these things

here becomes home.

Following on

Cricket fans will recognise “following on” as something that a team can legitimately ask another team to do. So the phrase is not redundant — unlike “watching on”, for example, or “off of”, as in “Get off of the couch”. (Incidentally, I might have to rethink my objection to “meeting with”. I had always regarded this coinage as not only redundant, but a Americanism, and therefore to be resisted. However, I recently met with it, you might say, in Northanger Abbey. So if Jane Austen uses it, it surely must be OK!)

This post does follow the previous one, though, in containing something I forgot to add to the latter. A further reason to expect that the radiation will be successful is that it was successful previously. The first batch of radiation treatments was also at Epworth Eastern, a couple of years ago. I say “successful” in that the spots on my left femur and hip (those being treated then) are now no longer active. Unfortunately other spots came up subsequently. Instead of continuing to hand-weed the garden, so to speak, a defoliant was instead required. This came in the form of a whole-of-body treatment, the chemotherapy and hormone combination, which I had under Dr P. (I continue on the hormone treatment alone, which kept me in remission for a couple of years.) So anyway, there is a reason for hope to spring eternal.

We saw a very good movie recently on Netflix, The good liar. I say “very good” rather than “outstanding”, because it is really carried by the performances of the two leads, Helen Mirren and Ian McKellen. There is a fascinating number of parallels with the Ring Cycle, though. Listing all these in my mind kept me awake from about 4.45 this morning! However, I had had a good sleep from about 9.45 last night. What seems to be improving my sleep? Exercise (no surprise there) and going on the wagon. The latter might seem counter-intuitive — doesn’t a drink help us get to sleep? Unfortunately, the sleep that follows is disturbed. The worst thing is I feel awfully foggy the next day. I now look forward to a mineral water after I have cooked dinner. Truly!

Go back, wrong way!

I saw Dr P in the middle of last week, and the news was appropriately middling too. The PSA has continued to creep up, from 4.8 at the previous test to 6.5.

Immediately following these scores in my notes, however, I have “BUT” written in caps! This was pointing out that the radiation treatments which I had in the weeks following Easter have not yet had time to have their full effect. This will need about six to eight weeks after the last treatment. So the next PSA test should show a decrease.

Dr P went on to say (as he has since the PSA started heading north) that he’s happy with where I’m at, he isn’t worried, and my beloved and I shouldn’t be either. Of course we are trying to take his advice. He has a high opinion of Dr B, the radiation oncologist who was in charge of my treatment. (I have a further appointment with this gent on 1 June, just to see how things are going.) Everything else continues treatment-wise.

Obviously this was not the news we had hoped for, and I would be lying if I said I was totally sanguine about it. But it is what it is. Everything is being kept under close surveillance, and I remain hopeful that, when the effects of the radiation treatments have percolated through, the numbers will turn around. I am still buying green bananas! I feel fine, and am continuing with exercise and language classes, book group, and so on, just as normal. There is no shortage of other stuff going on as well. I was even feeling a bit wistful about the days I used to bake bread, make marmalade, and all those other time-absorbing things. However, I would rather be busy — not so much that I don’t get time to enjoy what has been, so far, a mild autumn. It was 24 degrees yesterday — we were sitting outside a restaurant having lunch — pretty unusual for Melbourne in May.

Been there, done that

The culmination of an intensive fortnight of medical activity came this afternoon when I had my first COVID19 vaccination.

Family members may be surprised at this, given that I had previously said I was in no tearing hurry to get it done. This was partly based on advice that radiation treatment is immuno-suppressive. As previously posted, however, my radiation oncologist’s advice was contrary to this. In fact, he urged me to get the vaccine (he didn’t suggest any particular one). I subsequently checked on the web site of my usual GP clinic. They said that patients in category 1B like me should wait to hear from them. My beloved, however, rang them; in this way she got the names of a couple of clinics nearby which were getting a much bigger supply of doses. I was able to get an appointment at one of these.

I didn’t know whether I would experience side effects from the jab. My appointment was in the afternoon. When vaccination day rolled around today, I therefore did the food shopping and washing in the morning. The clinic was in Kew Junction, a suburb I know a little (my tour of duty in a public library service had included a stint at Kew Library). As well as filling in the usual registration form, I had to take along some proof that I was a cancer patient. I was a bit stumped by this requirement at first; no-one has written me a letter saying I have cancer. However, I took along the results from my last CT scan, which the clinic accepted as fulfilling its requirements. After only a short wait, I got my jab.

The injection itself was not painful; most of the people giving them out will have done a fair number by now. The nurse gave me the usual warnings, among which I was delighted to receive one that I may become nauseated! On my way back out to the waiting room, I congratulated the nurse on not having said “nauseous”. She asked me if I had learned Latin; I replied that I hadn’t, but was a former librarian, and therefore a pedant. We then had a brief but satisfying exchange about our respective lexical crotchets. This must have gone down well: while I was waiting the recommended 15 minutes post the injection, the nurse sought me out and gave me a Freddo frog. (Being a professional, she would possibly have done this anyway. She did say it was for medicinal purposes.) This was actually my first ever milky top Freddo, the top half of which had an unexpected but rather nostalgic flavour of condensed milk. As Dad would say, I manfully forced it down.

By now, a few hours later, I can say that neither the vaccine nor the Freddo was troublesome. I can feel that something a bit unexpected has gone into my arm. The arm isn’t exactly sore, however; I am just conscious of it. Generally I feel fine, and was easily able to pilot myself back to base, with a short detour via Maling Road for a late lunch. So, if anyone isn’t sure whether to get the jab, I would say “Go for it!”. From what I can work out, someone in my age range who has the Astra-Zeneca vaccine has about one chance in a million of dying from a blood clot. This seems like pretty good odds, and compares favourably to my risk of developing the same complication were I to contract COVID19.