Snakes and birthdays

I went to see Dr P yesterday and received some mixed news. The bad: the PSA is now 24, up from 16.The good: he emphasised that I looked “fantastic”, and that the disease is not causing radiological progression. (This will be tested the next time I see him in 4 weeks, by which time I will have had my three-monthly CT and PET scans.) I asked him if he was happy with me and he replied he was “happy with everything”.

Obviously an increase in the PSA is no cause for celebration. However

  • the reading hasn’t doubled (Dr P’s criterion for intervention);
  • one should remember that this is an increase recorded over two months, i.e. double the usual obervation period; and
  • the PSA itself is just a marker of the underlying disease. It is therefore a mistake to fetishise it. It’s not the quantum of the PSA, but the trajectory of the increases that is important. As long as I feel well and can do the things I want to do — both of which are the case — the number can be what it likes. (Short of point #1 above.)

So where do birthdays come in? This morning as I was trying to get back to sleep, I had the following thought. You know how after you’ve had a birthday, you think “Actually, I don’t feel different from when I was a year younger”? A monthly PSA score is a bit like having a different age each month. I was 16 in April, and 24 now in May. Something is happening, but I’m still the same person.

Dr P and I were both away in April (hence the two-month gap between consultations), he in Rome, we in Singapore. Below are some brief impressions from our five nights there:

  • Getting on the plane was a bit ugly (a one hour queue at Tullamarine for seat allocation). We learned later that Singapore Airlines had oversold premium economy. Also, my beloved and I were both affected by an annoying issue about our tickets. The form of name appearing in our passports was different to that on our tickets, the passports bearing our middle names, the tickets not. We had asked then travel agent specifically if that would be a problem, to which she replied “No”. Unfortunately she was wrong. This meant we couldn’t use the automated kiosk for seat allocation, because it couldn’t reconcile the two forms of our names, and we had to find a human to resolve this — who were in short supply.
  • The flight over was OK, and the hotel (the Shangri-La) was fantastic. My left ankle had gotten quite sore from all the standing at the airport, but I bought a (very expensive) sports elastic bandage for it, which made walking around a lot easier. The hotel is in 11 hectares of beautiful grounds, so we had a couple of tentative wanders around there.
  • The weather was very hot and humid — even the locals said so. So it was a bit too hot to walk around outside any distance. Fortunately the hotel had a shuttle bus to the CBD, and taxis were readily available — both air-conditioned.
  • The highlight of the trip was a visit to the Peranakan Museum , a tribute to a particular aspect of Singapore’s multicultural heritage. Fortunately this had a lift! All very fascinating with lots of personal stories.
  • The flight back was on a newer aircraft (Airbus A830), with better entertainment facilities and quieter. We had been to Singapore about 11 years previously, so knew what to expect. It is a very painless and tidied-up bit of SE Asia, redolent with shopping malls, great food, and tous les conforts modernes.

Don’t crack the Easter eggs yet

Following my last scans last Friday, we saw Dr P on Wednesday. The news was much the same as previously. The PSA has crept up again, 16.3 (from 14.7). In his words, this is “neither here nor there”. The good news was

  • the CT scan looks normal — everything the same as last time.
  • ditto for the bone scan. The scan folk mistakenly wrote on my report that there were no prior scan results with which to compare these ones. Of course I have been having these scans every three months for the last few years. Dr P rang them during the consult to query this. Whoever he spoke to found the previous results and said “nothing’s changed”.
  • Dr P is going away in April, and happy to kick my next consult with him forward to May, i.e. in eight weeks.
  • At the last consult we had asked him about going away for a holiday. He said he would be guided by the next scan results. So the uneventfulness of these scans led him to give us a leave pass until my next appointment with him.

I have been taking prednisolone over the last few weeks for the sciatica — see below. My GP wanted me to have a DEXA scan to establish baseline bone density data. (The scans I have with Dr P don’t give the right data for this.) So recently I had a BD scan, followed by a consult with the GP to discuss these results. As above, everything looks normal. The BD scan surveyed in particular the lumbar spine, femoral neck, and hip areas. (The thigh bone’s probably connected to the hip bone, or however the song goes. So sue me.) The lumbar spine is “in the normal range”. The left femoral neck is technically in the mild osteopenic range, but only just. (The osteopenia T-score range is between -1 and – 2.5; I scored -1.1, so only just within the range.) I eat plenty of calcium, and exercise quite regularly, so wasn’t expecting to have low BD. Nevertheless, it’s always good to have these things confirmed.

(We all know prednisolone reduces bone density. So in order that the DEXA scan would give me a proper set of baseline results, I held off on taking it until after the scan.)

The consult with the GP explored whether I could have something other than prednisolone. I said I had tried stretches, analgesics and anti-inflammatories, none of which worked satisfactorily, whereas the prednisolone does. (The effect of one 25 mg tablet each morning, followed by a coffee, is quite magical.) The GP ended up giving me a script for another medication, tapentadol, which should have a similar effect to the prednisolone, but without its side effects. I am yet to try this one; I have first to taper down the prednisolone over a week or so.

When too many Beethoven concerto cycles are never enough — I am just listening to the recent recording on ABC Classics with Jayson Gillham, the Adelaide Symphony Orchestra, and Nicholas Carter. I had heard most of this when first broadcast on ABC Classic (to whom a shout-out for promoting Australian musicians is due). Gilham has plays with neatness, clarity, and spontaneity, and gets up quite a head of steam with Carter. All beautifully recorded at live concerts in the Elder Conservatorium. I actually like it even better on CD. Who else have I got? Stephen Kovacevich/Colin Davis, and Maurizio Pollini/Claudio Abbado are the only complete cycles on modern instruments. (I also have several of the Christian Bezuidenhout/Pablo Heras-Cassado cycle on original instruments, which are quite fabulous.)

A moderate start to 2023

We saw Dr P this afternoon for the first appointment of the year. (He had been on holidays in January. Rather than being referred to someone else for a one-off consult, he and I had agreed to skip the January appointment.) Anyway, my PSA had risen slightly at the blood test a week ago, to 14. However, a rise of 1.2 over two months is nowhere near doubling. So no-one was bothered by this development.

The only complaint I have had since my last consult is the sciatica, which has become quite persistent. I had been told about various stretches, all of which I have been carrying out. The sciatica just keeps coming back, so persistently that it kept me awake last night. So yet another medication is called for. With Dr P’s blessing, last week I started a short course of prednisolone. (Family members will remember that our mother was taking this steroid for yonks.) According to Dr P, this drug is used in chemotherapy, and could well bring down my PSA a bit. My initial impressions of it were positive — it seemed pretty efficacious. However, this seems to be wearing off. (No-one wants me to be on it for long anyway. I am well aware of its effects on bone density and so on.)

These early efforts having proved ineffective, today I booked an MRI of my lumbar spine to see whether there is any disc compression going on. Fortunately the scan clinic had a vacancy for tomorrow afternoon. I will be seeing my GP the following Monday (20th) to see what, if anything, this scan reveals. As far as I know there are not that many treatments for sciatica other than a steroid injection. If this is appropriate — bring it on! TBC.

More good than bad

At our last consultation with Dr P on Wednesday 21st, I knew the PSA had gone up without him saying so. (When it has gone down he leads with that – when it has increased, he prefaces that with some positive news.) So it was on Monday, when, after a couple of encouraging comments, he told us the PSA had gone up a bit to 12.8.

The good news, however, was quite encouraging. I had had my three monthly CT and bone scans the preceding Monday. According to these, everything is stable. (My take on this — the hormone treatment is continuing to suppress the cancer.)

Dr P added that he was going to be away in January 2023. I generally see him every month, but in light of the scan results (and how I’m looking), he’s happy to not see me until February. This is the first time that I will have had a two month gap between consults for years. So if he feels he doesn’t have to keep such a close eye on me, for the time being at least, well and good.

Recently I read the old joke about averages, along the lines that someone with one foot on fire, and the the other foot in an ice bath, should, on average, be quite comfortable. On average, therefore, I am quite OK with this news. If the PSA grumbles along, but doesn’t do anything startling, that is all anyone can hope for. Shit happens, but we deal with it as and when. Meanwhile, we sat outside on the first warm day for ages and had Christmas a deux — which was what we both wanted. Props to those catering for and delivering comestibles to a crowd! Love and comiserations to those digesting difficult news. Both require good old-fashioned G and D — qualities I know you lot all have in spades.

Ten-four, good buddy

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

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.

Going down in style

We saw Dr P this afternoon. Cutting to the chase, the PSA has actually gone down down a titchy bit; the one from the previous consult 9.9, while today’s score was 9.7. A small decrease, but welcome after several consecutive rises. (I had gone there expecting to be told that everything had zoomed up, and I would need another round of chemo.) Dr P was very pleased, as (obviously) were we.

There was more good news. A couple of days before today’s consultation I had had my scheduled isotope bone scan and CT upper body scan. To quote from what that found, “avid foci in the lower thoracic region in the previous study have largely resolved with the activity at the L4 level not being substantially altered”. My inexpert translation: spots that were lighting up in the previous isotope scan didn’t light up this time; the exception was the one at the L4 vertebra, which is still lighting up. As before: no questions by request. If you want to read up on the isotope scan, have a look at Bone scan from the Mayo Clinic.

The only fly in the ointment is quite a decent bit of sciatic pain in the left thigh. This is exactly where it was when it first reared its head, less seriously, 5 or 6 weeks ago. (I had mentioned this to Dr P at our previous consultation, who said “Sounds like a touch of sciatica”.) At that time I was able to resolve it by stretching the thigh and running a spiky ball over the painful area. This afternoon those things, plus some escalating pain relief, made it go away for a bit. After this, however, it pulsed back to life, although less strongly than before. (Sitting for a while does seem to bring it on; apparently this is classically associated with the condition.) So maybe I need a steroid injection in the site. I will try a quad stretch, and/or running the spiky ball across the quad, when I have sent this off.

For now, as the man used to say, that’s your bloomin’ lot.

Still in single figures

Accentuating the positive here! The PSA at the consult yesterday was 9.9, up from 7.6 previously. I asked Dr P if he said he was still happy with how I was going. He said “Exceptionally happy!”. I looked great, etc., and was living with my disease (both comments from him). There was no need no change the treatment regimen. The next time I see him I will have had my three-monthly scan. (Dr P said he was being conservative with this timing; I said I never minded him erring on that side.) I am still feeling well, just a bit of discomfort along the left thigh, particularly after exercise class. Dr P thought this could be a touch of sciatica. This discomfort diminishes and ultimately disappears if I run a spiky ball along the area, and take some analgesics. (Apparently the standard treatments include massage and analgesics or a muscle relaxant.)

Although we were expecting a rise in the PSA, for some reason I found this particular one daunting. This was although I have tried to focus on the rate of increase, not the quantum. We will just have to see what the scan picks up. I don’t yet know exactly when the latter will occur, other than that it needs to be three days before my next appointment with Dr P on 28 September. The scan folk will be contacting me to set this up.

Nothing much to see

We went to see Dr P yesterday and the news was not as bad as we had expected. The magic PSA number is 6.8, not much of an increase on the previous one of 6.2, and certainly nowhere near doubling. So the rate of increase has obviously slowed. As well as the usual blood test, on the Monday of this week I had an all-body CT scan and a head and neck scan. (I generally have this combo every three months, so am well used to the rigmarole.) This showed one new spot, but also that an old one (on the L4 vertebra) had almost completely dissolved. So, in other words, a steady state. Dr P’s wrap-up was that the disease is stable and low volume. Chemo will not be required unless and until things go south; I am just going to continue on the existing regimen of a Zolodex implant every three months, and four enzalutamides a day. We were obviously relieved, and celebrated with a drink before dinner, which was Chinese takeaway — night off for the cook!

We have been watching Succession on Binge, which we have on a free three month trial. Good, but not as outstanding as Mare of Easttown, via the same source. I have embarked on a mini project I have thinking about for quite a while, digitising my German index cards to put onto my online vocabulary lists on I had hoped to use our new printer scanner for this, but while this scans the cards perfectly well, even after quite a few goes I can’t get it to save the scanned files in any editable format. (I am too cheap to pay for full-fat Adobe Acrobat, which would probably do this.) I have, however, found a workaround, involving scanning a batch of cards with Google Lens on my phone, then copying that text to the laptop. I then paste the text into a Google Sheet, massage it a bit, then upload it to as a tab delimited file. Nerdy paradise!

Mutatis mutandis

We had an appointment with Dr P on Wednesday. On that date the PSA was 3.6, an increase from the previous reading of 2.9. All the comments made in the post for the last appointment (“Onwards and upwards“) apply here as well. The only new information was his reply when I asked him at what PSA score he would change treatments. He said (words to this effect) when the current score has doubled relative to the previous one. I have an appointment with him every four weeks, so, obviously, the PSA would have to double over that period. At the last consult he did a quick calculation of the present doubling rate, but it is nowhere near what he would find alarming (my words, not his.)

There is fortunately no other news. The RAV4 is still great to drive, with just a few quirks emerging in its operations. It has a powered tailgate, which can be operated from the key fob, from a button on the dashboard, or a hidden switch on the tailgate. (It is accompanied in all these instances case by warning beeps like a truck reversing). The tailgate can only be operated from the key fob or the tailgate button, however, when the car doors are unlocked. Another owner pointed out that the doors can’t be locked before the tailgate has finished closing — a process that takes maybe ten seconds. So if you go food shopping while it’s raining, you return to the car with the bags, unlock the doors, open the tailgate, load up, then wait in the rain until the tailgate has closed before you can lock the car. (This assumes you have to go somewhere else before driving off.) Of course, if you park underground, there is no problem!

At least the tailgate doesn’t have that opening technology whereby you stand on one foot and swing the other one underneath the rear bumper. (I’m not making this up! It’s quite common on Euro SUVs, I think.) This calls for good balance if you are burdened with shopping bags. I’ve witnessed people in this situation swinging a foot underneath the back of their cars, fail to do it correctly, and have to have several goes at it, becoming more peeved each time. The wonders of proximity keys!

There were a few other minor things we found mildly annoying about the car. Once it has reached 20 kilometres an hour, the doors automatically lock. One unexpected disadvantage of this is, if the car is in Park with the engine running, and someone in the front or rear passenger seats wants to get out, the driver has to unlock the doors. My beloved became quite irritated when I had to release her from durance vile. (I spent about half an hour reading the manual before I could reverse this setting. Now, when I put it in Park, the front passenger door unlocks.) At the free 1,000 kilometre service we also got the dealer to switch off the speed limit warnings, which were becoming quite irritating. We kept the warnings about red light camera intersections, though! These are but minor foibles in a car that goes about its business in a quiet and calming manner.