Emotional and psychological

The impact of the cancer diagnosis on me and those who love me in emotional and psychological terms.

Ten-four, good buddy

by feurmann

We shuffled along to our monthly consult with Dr P to get some better news. The PSA has gone down from 12 to 10.4. Everything else in the last blood test is looking good as well (liver and kidney function and so forth). Dr P repeated the usual flattery about how well I look, which I must say, went down well. But it was the headline number which was reassuring; not so much the quantum, but its welcome southwards direction for a change. Of course it will continue to move around, and doubtless give us concern again. But for now, we’ll take it.

Things elsewhere are improving as well. After our recent excursion to the Blue Mountains, my beloved came down with a nasty cough, which morphed first into a virulent cold, then sinusitis, complete with throbbing pain in the top right hand teeth. Her face also became swollen on that side of her face in a fashion she found most unbecoming. A phone consult with a GP (not her regular one) produced a prescription, delivered via SMS, for an antibiotic. This had some effect, but not as quickly as we had hoped. So we were able to get in to see her regular GP in person, who gave her a stronger antibiotic script (Augmentin). She supplied a script also for a super-duper analgesic with a decent whack of codeine. A few days of this combo have pretty much eliminated the swelling and tooth pain. The patient has also progressed from foods like soup, yoghurt, and mashed banana and mango, to more solid fare.

While this was going on the GT also to be dropped off for a service (booked weeks ago), and I had an appointment with my GP to renew my mental health plan. In one of the better kept secrets of public medicine, one can receive (on the say-so of one’s GP) six subsidised sessions with a psychologist. This can be extended if desired by a further four. This initial lot of 10 sessions can itself be extended, again under the aegis of the GP, by a further 10. These, in combination with an antidepressant, have been brilliant. For anyone feeling worried or distressed (and there is a lot of worrisome news around), I recommend asking your doctor about this. I was lucky to find a psychologist pretty quickly – they are usually snowed under. Another positive also is the number of people who are being open about their mental health struggles, and who are encouraging open discussion of these issues, which may lead to people seeking help.

With the unusually vile weather in Melbourne, and my beloved being laid up, we have been cocooning and watching the Kingsman movies (pure spectacle), and one for Agatha Christie fans, See How They Run. There are some good series on Disney as well; Andor, which is a kind of Star Wars prequel, and The Offer, a series about the making of The Godfather. All replete with A-list talent and excellent production values. This morning I also finished vol. 2 of ‘In search of lost time‘: In the shadow of young girls in flower. (Other translations give the series title as ‘Remembrance of things past‘, and the volume as In a budding grove. The former title is a bit more accurate; Proust aficionados just call the cycle ISOLT. ) November 2022 being the centenary of Proust’s death, there is a lot about him in the press. In the case of both the primary and the secondary materials, there’s a lot of it about. (Thanks to everyone who has sent me messages about these pieces.) There is a great article by Helen Elliott about this centenary, and Proust in general, in The Monthly . Unless you are a subscriber, you will have to give them your email address. Live dangerously and just do it. Neither care nor responsibility!

12 is the new 10

by feurmann

At our last consult with Dr P, there was an unwelcome turnaround: the PSA had gone up to 12 (from the previous score of 9.7). This was a bit disappointing in that we had hoped to continue the previous slight downward trend. Putting it in context, however, as Dr P is always doing, he said the cancer is grumbling along, but the medications are doing their job and keeping the rises small. I had had the CT scans only a month ago, and the results of those had been good. He actually apologised for being a touch paranoid in having me do the scans every 3 months. I said he could be as paranoid as he liked. He said I looked great and he was sure I was enjoying a good quality of life. I’ll take his word for the former, but the latter is certainly true; I am feeling fine and being very well looked after.

Straight after the consult I went to the day oncology ward and had the Zolodex implant. This was uneventful except for a small bleed from the implant site in the abdomen. (I think I caused this by bending over to pick up the cover from something on the tray of sandwiches I had been brought by a volunteer.) Anyway, no matter: I have had this before. The nurse just put a new and bigger dressing on it, from which there have been no further bleeds.

The day after I felt vaguely unwell — nothing specific — we both always have a bit of measurement anxiety before each consult. It was a rotten day, with steady rain, so I cancelled exercise class and had a day at home, spent largely on the couch, apart from attending to a loaf of bread. The latter was successful, and the day proved very therapeutic.

We have a break from the rain today (although showers are forecast), and tomorrow is Cup Day. Because of this my Tuesday exercise class will be cancelled. So I don’t miss out on two classes in a row, my beloved has made a one-off appointment with an exercise physiologist for us both; exercise is a vital part of our maintaining ourselves in a well space. I am pushing ahead also with Proust, as per the following quote:

“We do not receive wisdom, we must discover it for ourselves, after a journey through the wilderness that no one else can take for us, that no one can spare us, for our wisdom is the point of view from which we come at last to regard the world.”

Marcel Proust, In the shadow of young girls in flower (In Search of Lost Time, vol. 2), p. 482. Translated by C K Scott Moncrieff, edited and annotated by William C Carter. Yale UP, 2015.

Down but not out

by feurmann

We went to see Dr P yesterday, and the news was good: the PSA was 0.94 at the last test. He said “I told you I’d get it down to zero”, and he has. As I understand it, anything under 1.0 is undetectable, so this is as close as makes no difference. (Or, as Dad would have said, 5/8 of SFA. That’s the expurgated version, anyway!) We walked away with a script for the next lot of Enzalutamide, a copy of the latest blood test results (“pristine”, according to the good Dr), a screed for the next blood test, and the receipt for the consult. After the Medicare rebate, this last was only a few dollars — 5/8 of you-know-what! Frequent illness points, or something.

I had been expecting the number to continue its downward progress, but still felt rather tired and drained afterwards. Had we been able to go out for a coffee we would have; as it was, we just had one at home, and watched “My Unorthodox Life” on Netflix. The show is about Julia Haart, who left an orthodox Jewish sect in New York and went on to make a major career for herself in the fashion industry. (There is a rather academic account of the show in The Conversation, which nevertheless covers most of the bases.) Whether you are into fashion or not, it is a lot of fun, and is beautifully shot in the Haart penthouse in Tribeca, her fashion company, and various other locations in Manhattan. In the last episode we watched, she, her husband and four kids also go to Paris for the fashion season. They hire a 13th century chateau as well (presumably close to Paris). You get the picture — they have plenty of dough — but this makes the show a great bit of escapism!

I had a small win also, closer to home. The study, where I spend a lot of time, had a picture which, for historical reasons, was situated oddly in the right hand corner of the rear wall. I wanted to move this picture to the middle of the wall, and hang my masters and long service award from RMIT on either side. The fact that all these are a different size — and that I didn’t have another hook the same as that which the picture was hanging on — made this a mañana project. A catalyst that enabled me to Move Forward with it was reading an article in the New York Times about picture hanging. This article made a couple of helpful suggestion for hanging pictures of disparate size together:

  • give them a common top line, and
  • using painter’s tape (AKA masking tape) to show this line.

I had the further brainwave to use a blob of Blu-tak on the top of this line of masking tape to show the position of each hook. (Saves making pencil marks on the wall.) So the tape gives you the horizontal and the Blu-tak the vertical reference. Et voila!

Study

Of course I mucked it up slightly in the execution — measure once, cut twice, and all that. (Not saying where!) But eventually I think it was quite successful. Oddly, from this slight angle, there is a slight optical illusion that makes the large picture look a tad higher than the others. From where I am sitting it actually looks a bit lower. I can tell you they are the same distance apart, however they might look in the picture! Anyway, it is “rough enough for the bush”. More importantly, it has the elusive WAF (Wife Approval Factor). This is no small thing from someone I have been known to refer to affectionately as Der Fisch — as in, an eye like a dead fish! (This is meant to be complimentary: I can’t understand why it is not always so taken.)

Less good news

by feurmann

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.

Apocalypse already?

by feurmann

Like most of the world, I have been watching and reading the coronavirus news with mounting alarm. Obviously, any new virus which is capable of causing fatalities is frightful. One to which there is as yet no vaccine (it being a new strain) is worse. And one which has the potential to initiate a global recession is worse still. All this is known. The cherry on top is the the uncertainty in figuring out just how bad things might get. Epidemiologists and other experts are either being properly cautious in their forecasts, or predicting that (as I saw over the weekend) coronavirus will be like the common cold; everyone will catch it at some point, but not everyone will be symptomatic, and only a few of those will progress to the full-blown disease. (There is a good article which I stumbled on, 12 myths about the coronavirus, that contains some good information in an accessible form.)

Like everyone, the unfolding news about the coronavirus affects me in a particular way. Before all this happened, my beloved was planning to going to Paris towards the end of March. I was to accompany her, and we would go somewhere in  Europe afterwards. But where? We were attracted by the idea of a cruise: just making one booking, and only unpacking once. None was available, though, it being just too early in the year. As time progressed, it became less likely that she would get to attend the meeting anyway: it was a long way to go for one-and-a-half days. The year was starting to look a bit crowded already, weirdly, with other things we had planned. So 2021 began to look like the earliest I could contemplate another overseas trip. Then the coronavirus news started trickling in, making what seemed only probable into a near certainty.

Given that (to put it bluntly) I may not get many more opportunities, an overseas trip is fairly high on the bucket list. So anything that defers it is unwelcome; the more so if the period of deferral is as indefinite as this. No-one seems to have the definitive formula for how people can minimise their chances of infection. For me, however, one precaution stands out: stay out of situations in which you are in forced proximity with a lot of people. An international flight and a cruise seem therefore like exactly the things to avoid.

Being a cancer patient by itself doesn’t mean you have to avoid all risk of infection. (An exception is people who are actually undergoing chemotherapy, who are encouraged to avoid opportunistic infections.) And I feel generally very well. Having had chemo and radiation treatment, though, does undermine one’s immune system. Consequently, I make sure to have a flu shot — all the more given the coronavirus infection peak may coincide with the flu season. So, while you can’t avoid risk altogether, you can sensibly minimise it. This means taking precautions that people who aren’t cancer patients may not bother to take.

My situation is fortunate in several ways. Being retired, I no longer have to undertake the daily commute on increasingly crowded trains or trams. Because my main income source is an indexed super pension, I am rendered fairly immune from the effects of an economic downturn. If I want to take a less risky trip, there are plenty of places to go in Australia with my beloved. (She is the one who will really need the holiday.) Many people would gladly swap their existential anxieties in the face of the coronavirus for my concerns. Saying this doesn’t make the latter go away — it just puts them in a context. 

On this note, some of you will have seen the article which fortuitously appeared in The Guardian this morning “Young and forever sick“. This piece gives an account of some young people’s experiences with a chronic (and acute) medical condition. The focus is on the concept of mortality salience — how a serious illness can change your view of the world. I have written about this before, so won’t repeat myself other than to say that I think this is an important discussion to have. Olivia Gee’s experience of serious illnesses in her twenties adds a layer to this already gnarly topic. Getting a life-changing diagnosis when you can reasonably expect to have most of your life in front of you would be tough indeed. (To say that it is tough at any life stage is not to negate her experience.) Medicos and mere mortals alike need to remember that their patients still have things that they want to achieve. This existential shopping list will be different for everyone.

Scoreless draw

by feurmann

My beloved and I went along for my final appointment with Dr Parente for the year. All was as if had been the other times — PSA undetectable — everything good. Of course, this is something we never get tired of hearing! Herself and I had a celebratory coffee in Hawthorn before went to my exercise class.

The week before each appointment, I have a blood test, leaving enough time for the lab work to be done and delivered to Dr P. Around then, I start getting testing anxiety; I am more irritable, although I try not to be, and my sleep is worse. On the morning of the appointment, I feel quite neutral — there is almost a relief that it is here.  On the morning of the appointment, we drive to Box Hill, hoping to get a spot in the practice’s car park. This is quite contested. To keep non-patients out, the practice has had to hand out passes each day to display on the top of their vehicle’s dashboard. If there is a spot, my beloved parks the car while I nick in to grab a pass. I bring this back to her and retrieve my backpack. Necessary things contained therein are my notebook, and a book to read. If I don’t have the notebook, I just don’t remember anything much of what is said in the appointment. I just sit and read my book until my name is called. 

We have found morning appointments are best; I am usually a bit more alert, and there is less chance of the good doctor running behind. Dr P goes through the results from the blood test. This is usually straightforward; everything is over in about five minutes.  It is strange how, after I get this news, I feel a bit scatty and distracted. I never expect the results to be the same as they were last time, even when they have been good all year, or remember how I feel from one time to the next. We have gone through this cycle eight times this year. In saying this, I am very conscious that everything is the best that it can be.

Every other time I see Dr P, all being well, I have another Zolodex. (This is the estrogen treatment that is keeping the cancer quiet. It is delivered in the form of an implant about the size of a grain of rice.) I just walk up the street from the practice to the Epworth Box Hill oncology ward. One of the nurses there checks the dose, and what side it went in on last time. Then they swab the other side of my tummy, and shove it in. This is one of the situations where being a bit rounded is actually quite a good thing! One of the nurses said that they have to hunt around on really lean patients to find enough fat into which to put the implant. Even with my moderate spare tyre, the injection still leaves a fair size bruise.

Dr P told me to keep up the exercise, which I intend to do. I am about half way through the three months of exercise classes I am doing for the university study; three classes a week for the next six weeks, with a break for Christmas. The classes are all supervised by PhD students in exercise physiology. They are lovely young folk, radiating fitness and endorphins, who implacably raise the bar on us old roosters. The aerobic session I do first has gotten longer, and now features high intensity interval training. (This is where you go flat out for a minute, then ease back to the original speed. I do this three or four times, then have a cool-down.) In the resistance training part, the weights have gotten heavier, and the number of sets has gone from two to three. I am feeling better for it all, and even putting on some muscle.  On Sunday, two days after my last class, I felt restless, and found it hard to concentrate. I think I am getting hooked on this exercise caper!

I have been pondering what to do around the end of January, after the study finishes.  I don’t think I will do three sessions a week on my own dime; two, however, is quite a possibility. Meanwhile, Christmas looms into view again. I had the end-of-year party for the Museum last week. This week there is the party for the physio practice I was going to before starting the university program. The same day there is a coffee morning for former RMIT people; everyone kindly rearranged this from its usual day to accommodate my exercise class. This week we will also be getting a visit from an air-conditioning installer, fortunately the day before a heatwave. We will have gone from fifteen to thirty-eight in the same week, an impressive range even for Melbourne. 

Nothing to see here …

by feurmann

The main news, and you will forgive me if I repeat myself, is the PSA is still undetectable.

Getting the all-clear from the good Dr P always gives me a bit of a boost. Before we saw him I had made an appointment for the following day (i.e. today) for an induction from the volunteer co-ordinator at the Melbourne Museum. (I will be working there on a project to make digital scans of archival scientific documents, and add metadata to records linked to those digital images.)  Being involved in this enterprise will be a good thing, because manageable. I will be there only a morning a week, breathing those cataloguing muscles back into life after five years of inactivity. I made notes on the train on my way in about how much I am really appreciating Melbourne this winter — the grey days, the European lanes in the CBD, the lovely gardens and Victorian buildings through and past which I walk on my way to the Museum. 

The morning went the deceptive way of days when everything seems to just fit in. I left the GT in a side street and walked back to the station. The train before mine stopped the traffic at the level crossing on Riversdale Road in nice time for me to cross, touch on with my Myki, and get the all-important coffee. I had allowed half an hour to get from Parliament station to the Museum, plenty of time to walk along Spring Street, past the Royal College of Surgeons, through the Carlton Gardens, and, with a slight detour, past the Exhibition Building. (In the course of my Museum induction, I learn that this huge structure, the best preserved of the Victorian era exhibition buildings, is technically part of its 15 million item collection.) 

Of course, when things seem to be going just right, some sand gets thrown in the gears. I had planned to do the food shopping on the way home. In my haste to leave early in order to get the coffee, I had forgotten to bring both the cool brick for the little esky in the car boot, and (disastrously) the shopping list. Rather than have to go home then go out again, I reconstructed the extensive list of comestibles as best I could on my homeward journey from the Museum. I decided to go to the supermarket, then the butcher, so that the meat wouldn’t be sitting in the esky sans cool brick. Of course I promptly forgot about this, arriving at the butcher first. Curses! Should I backtrack to the supermarket? No, I’ll just get the meat, then whiz through the grocery shopping so the meat doesn’t go off. (With ambient temperatures of about 12 degrees, this was never likely, but it is one of the things I am most neurotic about.) Of course, not having a proper list, many things remained annoyingly needing to be purchased in a second excursion tomorrow.

That day I am to have two cooks, the first to make a banana bread for morning tea. One of our neighbours is moving to the inner city; she and her daughter have been clearing the ancestral home. I offered to bring them around coffee and a snack to sustain them in this enterprise. Fortunately, they have no dietary issues for me to consider. (I wouldn’t mind if they did, it just makes things a tad more complex.) Unfortunately, I am not sure that I have enough sugar — this being one of the things left off my reconstructed list. If I don’t, I am going to have to improvise by making up the shortfall with a few spoons of jam. (I have done this once before — one just has to take a guess at quantities — but it worked surprisingly well.) The second cook is dinner for us and our niece. I have all the ingredients for the main course, but not the dessert. So I will have to head out after morning tea and get the things I left off the list. You’ll be sick of hearing about this list! I’m sick of thinking about it! My usual scattiness is being given a turbo boost by the stress of measurement anxiety — bringing me back to the start of this rather ratty blog post.

Still, compared to what they could be, the little niggles and irrits I am having a whinge about here are great problems to have. I do know this. Thank you, universe! You feel you can’t make things too easy for me — in case I get too complacent? Fair enough. You the man.