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.

Marching on

I had my appointment with Dr P this morning. The PSA has gone up slightly again — to 4.8 from 3.7. However, the scans I had on Monday didn’t reveal any new activity. So I am still radiologically in remission. Dr P said there was a spot on my chest which was probably causing the increase in the PSA. (On the way home I checked the list of metastases, or “spots” in doctor-speak, that he gave me in February, 2019. This showed one on the sternum — this is probably the one he was referring to this morning.) Dr P referred me to a radiation oncologist for stereotactic treatment of that spot; I will be having this treatment starting on the 23rd.

(I had stereotactic radiation treatment a few years ago — after the operation and before the chemo/hormone treatment. So it is quite familiar. All these treatments are pretty refined, and fortunately don’t seem to cause me many side effects.)

Anyway, Dr P is not worried about the blood test and scan results — “not even close” were his exact words. I am certainly still feeling fine. The sleep continues to improve, and this always makes me feel better. I will continue with the exercise classes twice a week. (Ditto with the hormone treatment unless and until I need a different one.) I had another Zolodex implant after the appointment with Dr P. After that we had a coffee on Maling Road, and I went to the greengrocers.

The day went a bit pear-shaped after we got home, though. I should explain, for those who haven’t been to our place, we are in the rear unit of two. Another pair of units is directly to the north of us. As we approached our place, we saw a police car on the nature strip and a fire truck and an SES truck in the street. As we passed the units beside us, my beloved glanced up their driveway and exclaimed “Oh, my God!”. A car was sitting in their driveway at right angles to the boundary fence. When we got up to our driveway, the car belonging to the neighbour in the front unit was parked outside our garage. This was all highly unusual!

We asked one of the coppers what was going on. Apparently someone in one of the units to the north of us, while driving out of their garage, had lost control and gone through the boundary fence. This had flattened a section of the fence, and knocked a hole in the garage of the front unit on our side. (This was why the neighbour’s car was outside our garage.)

Our garage has a party wall with that of the front unit. The police and SES therefore asked to check inside our garage to see if it too was damaged. There was a small crack in our garage wall, but no other visible damage. As a precaution, though, the SES put a prop inside our garage to reinforce the roof where it joins our neighbour’s. The latter went to the trouble of tying up the prop to prevent it from falling onto our car, should the wall shift. (They were very concerned that they get this prop back — I assured them I would keep an eye on it. I reckon if the prop fell on the Camry, we would be up for a new car — they are hefty pieces of kit!) Our neighbour’s garage is quite badly damaged — one can see straight through the wall where the impact occurred. She will have to leave her car in the street for the time being. It was just lucky no-one was hurt.

Everyone was very calm and pleasant. One of the police helped me drag some stuff out of the garage to let the SES put the prop in. The police also helpfully supplied us with the contact details belonging to the driver of the car. Armed with this information we rang our insurance company and explained what had happened. They will be sending out someone to assess the damage to our wall in the next few days. No-one actually said “You can go on parking your car in the garage”, but we inferred that this was a fair thing to do while we are waiting for any remedial work that might be required. TBC!

Carry on in remission

We saw Dr P this morning. The news wasn’t great, on the face of it: the PSA is up from 2.3 to 3.7. However, Dr P continues to be happy with where I’m at. He referred to the scans I had had in December, which showed neither “clear evidence of bony metastatic disease”, nor indication of “local soft tissue recurrence”. He said while the PSA scores showed that there was something going on biologically, I was still in remission radiologically. He wants me to have scans now every three months, adding “I’m probably just being paranoid”. (He can be as paranoid as he likes as far as we’re concerned!) He doesn’t intend to change the treatment I’m on until something shows up on the scans.

As Dr P pointed out, we have been coming to see him for three years now, something that surprised us. During this period I have had adjunct chemotherapy and hormone treatment — the latter of which is continuing — and spent two years in remission, i.e. with an undetectable PSA score. It was welcome news to me also that I remained in any kind of remission — I thought this had finished when my PSA score started climbing. Being in remission doesn’t change anything, of course, it just makes me feel that bit better. Physically I still feel fine, thanks to the exercise classes and lots of walking.

The last lot of scans was bulk billed, so the only drawback of having more is the time required. There is a gap of an hour or two between the two scans. By the time you arrive, get prepped, have scan #1, then wait until you can have scan #2, the day has a fair sized hole in it. Last time I came home for lunch during the gap. Next time, however, I will just walk up to Whitehorse Road, buy a sandwich, and go and sit in the park across the road from the hospital. If it is a hot day I will renew my community membership in the RSL and have lunch there — the food is pretty good, and they even have a senior special menu!

Post for 23 November 2020

I am pretty tired after an eventful morning, so I am just going to write the basics.

I saw Phillip P, my oncologist, this morning. The PSA has gone up slightly, now 1.4. (The previous reading was 0.5.) He said it is still very low, he is happy with how I am travelling at present, and that I shouldn’t worry. He is focused less on the quantum of the PSA than on the trajectory of the rise. A steep increase would be concerning, but a gentle increase like this is not. Nevertheless, he wrote me a referral for a couple of scans (CT and bone) to be conducted before our next appointment. These will reveal if there is any spread of the disease.

(After I came home from a walk this afternoon, I got a call from the scanning centre at Epworth Eastern. The scans are booked for 17 December. It is a convenient location in Box Hill, being where I go for the Zolodex implants. Speaking of which, the next consult with Dr P, and the next Zolodex, are booked in for 23rd of December. This is a bit better than the original appointment, which was scheduled for the 30th of that month. There are lots of places at which I would prefer to celebrate my birthday than a day oncology centre!)

Dr P was running quite behind, and I had a consult booked also later that morning with my GP. I did make the latter on time. Unfortunately, it was a bit jarring. After having discussed a few alternatives for sleeping tablets, he wrote me a couple of prescriptions for some new ones. I quizzed him to make sure I understood how I was to take them — alternating one with the other, or both at once — the latter was the case.

He then said I had had my fifteen minutes and I couldn’t have any more time. If I had further things on my list (which I did), I should have outlined them at the start. I did get one more prescription out of him, for the blood pressure medication. Anyway, I will be changing GPs. I get that medicos are stressed. They need to manage that stress, though, in ways that don’t involve taking it out on their patients.

Positive points to the day included sitting down in a cafe for a coffee after the GP consult — I needed a lift by then! Another was going to the local library, picking up my hold, and taking out a few other books as well. These were both things I had missed doing for most of this year (cafes and libraries having been closed in Melbourne). Op shops have re-opened as well, so things are really getting back to normal.

Last night I took out a monthly subscription to Netflix. This will allow us to watch some more episodes of Emily in Paris, previously mentioned, and a favourite of my beloved. We will also be able to bring ourselves up to date with The Crown. The Netflix Android app works well with the Chromecast, and we were able to switch on the closed captioning without difficulty. One can just renew the subscription monthly. Entertainment is welcome at present, particularly in the leadup to The Festering Season (as I grumpily think of it).

Rest & recovery

When I started writing this post, I was trying to remember when I had had the hernia operation. According to an email message in my inbox, this took place on 9 October. I came home the following day. By now I am therefore well past the four week mark in my recovery. According to what the nurse told me, I have a couple of weeks to go.

The wound site was never really painful, and over the last few weeks has become gradually much less sensitive. It was always a bit worse in the evenings, when I generally felt more crummy. Now I am only conscious of the wound if I do something it doesn’t like. Yesterday was one of those days.

Sweeping the courtyard was one of the jobs I had been putting off. This procrastination isn’t unusual for me, but in this case I was conscious of all the bending down this job would involve. (Bending from the waist is better for me at the moment, as it puts less strain on the wound site.) By now, though, I thought that I could probably handle a little task like this. Sweeping the courtyard always makes it look neater and more inviting. Afterwards, I pictured myself sitting out there in the shade of the umbrella, enjoying my handiwork.

This was pretty much how it transpired. The sweeping, picking up all the debris into the big garden bag, putting some of that into the compost, and the rest into the green waste bin, all took about an hour. Along the way I re-fixed some shade cloth I have rigged up over the daphne in the front garden. I interspersed these with hanging out a couple of loads of washing, including the towels. (All these little tasks took me over my step target for the day, without having gone past the mailbox.)

I did notice the hernia wound after a while. It wasn’t painful exactly — just enough for me to think, okay, that’s about as much as I can manage right now. But I enjoyed being outside, getting things looking a bit better, and having a closer look at the garden.

The main problem I’ve had over the last few weeks has been my sleep. I think this has to do, at least in part, with my not being able to exercise as much as before the operation. (I did resume a modified exercise class just last week.) Consequently I have been getting, on average, an hour and ten minutes less sleep than I was having before the operation. I have also been waking several times a night, and getting up in search of something that will knock me out for a while. So the sleep has been both shorter and more fragmented.

The other reason is to do with my sleep medication (Stilnox), to which I have been gradually becoming habituated over the years. I really need a new one. Whatever I take, however, has to not interfere with the Zolodex — while I remain on that treatment. I will be seeing Dr P on Monday week to discuss all this, together with my most recent blood test.

I have had insomnia for about 25 years now. Over this time I tried most of the sleep treatments around. None delivered a cure, so I just learned to live with it. The last four weeks has been an extremely sustained patch of sleep deprivation, however, and I have been finding it pretty tough. I hope that gradually getting back to my full exercise program will help.

I am also going to investigate contactless shopping for groceries. In this scenario, I drive to the supermarket, open the boot of the GT, and send a text to the effect of “I’m here”. Someone will put the bags into the boot of my car, I drive home, and at this point my beloved will bring the bags inside. This way I will get a mini-outing, and she will have the chance to catch up on her work a tad. From each according to his ability, to each according to her need.

We did some old-style shopping over the weekend. Our dishwasher packed it in last week. (I think the noisy, thrashy thing is about 20 years old.) I read lots of reviews, and measured the recess in which it sits under the kitchen bench several times. Yesterday we headed to one of the nearby big box stores to kick some tyres. Did we want a two or a five year warranty? Would a cutlery drawer be a good thing, or would we make do with a basket? All the alternatives were worked through, and we chose a German make with which to replace the tired old Dishlex. The credit card was unfurled to good effect, and the new dishwasher — a Siemens — is being delivered on Friday.

In the meantime, my beloved and I have had some slightly nostalgic times handwashing our dishes, and drying them with a tea towel. I seem to remember Mum and Dad having sotto voce arguments while doing this. Like them, we have fallen into gender roles — my beloved washing, me drying up. We haven’t had any arguments so far, though, even when I queried her practice of putting the cutlery into the sink first. I will remain a cutlery-last man to the end of my days! (I hope this preference will soon revert to being a theoretical one.)

Mr B sees it through

[Apologies — I have corrected the first sentence to remove various solecisms. Some changes further down are too trivial to mention. So no need to read further if you’ve already read it.]

Yesterday I went with my beloved to see Michael B, the surgeon who carried out the hernia operation . This follow-up consult was one week after the operation had been carried out. Mr B pronounced himself satisfied with how everything was looking. My main question was “When I can go back to exercise classes?”. He thought another couple of weeks’ recuperation should do it .

Just before Michael came in, the nurse removed the dressing that had been put on the wound after the operation. This dressing was transparent, allowing any bleeding or anything else undesirable to be identified. According to the notes with which we were supplied on discharge, this dressing could be left in place, absent any leaking, oozing, or other indications of the wound not healing. We had seen no reason to change it, however. (Several spare dressings had been included in the sample bag I took home on discharge.)

Before yesterday’s consult, I had imagined the dressing being ripped off in enthusiastic Nurse Ratched style, perhaps preceded by a bracing “This won’t hurt a bit!”. However, it was just gently peeled off, with zero discomfort. I was lying on an examination couch, with my shirt and jacket pulled up a bit, so I couldn’t see exactly what the nurse was doing. On our way out my beloved and I asked ourselves “Did she put another one on?”. I checked when we got home — she hadn’t. But the wound still seems dry, and neither tender nor inflamed .

A few stitches are holding the edges of the wound together. These stitches will just dissolve by themselves, so there is nothing further to be removed. Because I seem to be healing well, a second consult date wasn’t set. Of course I can ring and report any problems or complications that might ensue. Based on how things have gone so far, however, I am not expecting any.

Hospital admissions are bit more protracted, in Victoria at least, because of a compulsory temperature check, a digital form to be filled out on one’s phone, and other CoVID19 business at the point of entry. Even with these extra steps, we were in and out in less than half an hour. This period is the maximum for which Knox Private Hospital provides free parking: after this, their meter is on. Anyway, we must just have snuck under the wire — yay!

Yesterday’s visit featured another freebie: there was no charge for yesterday’s consult. I am not expecting any other charge to be forthcoming. Before we booked in for the procedure, I had requested a financial quote from the practice. According to this, Mr B’s, the assisting surgeon’s, and the anaesthetist’s fees were all to be sent direct to our health insurance fund. This seems to have happened exactly as promised. So, apart from a few dollars for some anti-inflammatories and analgesics with which I was supplied on discharge, the procedure cost has cost nothing.

We won’t (fingers crossed) have to pay anything for the costs for my overnight hospital stay, either. The hospital cover of our health insurance features a $500 excess. The hospital cover year runs from May to April. (Just to make things difficult, the extras cover corresponds to the financial year.) From May to April, the first two hospital admissions for either of us cost $250 a throw. Any subsequent admissions in that period come after the excess has been paid, and are therefore not charged.

This operation was preceded by a couple of hospital admissions during this period, each for a Zoladex implant (albeit this is only a day procedure). The lady at the cashier’s at Knox Private, by whom I was interviewed at admission and at discharge, did try to charge me $250 both times. She readily demurred when I pointed out I had already had two hospital admissions since May. No, I’m not having anything else done, even for free! I do believe in being careful what you wish for.

Hernia op all done

Many of you will have found out, directly or indirectly, that my hernia operation went successfully yesterday.

I didn’t get much sleep last night. The wound made it difficult to push myself up the bed far enough so that my feet weren’t pressing against the end of the bed. Fortunately it was possible to raise the middle of the bed independently of the top section. This raised my knees a bit, which took a lot of pressure off the feet. By the time I fiddled around with this, however, I had woken up, so I had to go through all the business of sitting up again. Laughing was the worst thing for the wound — I had to press on the wound site to avoid straining it too much. (Of course, trying not to laugh at something that is bloody funny is next to impossible.)

I felt a lot better after breakfast this morning, and was able to get up, shower, and dress myself independently. (These always seem like major achievements after surgery!) Kudos to the nursing staff at Knox Private Hospital, who were kind and attentive. I was sent home with painkillers and anti-inflammatories, and strict instructions not to lift anything much, or strain the site in general. Today when I stand up, the wound is a bit painful. When sitting I can still feel it, but there is only a mild discomfort.

Fortunately I had taken in a few things with which entertain myself. Among these was Night letters, by Robert Dessaix. I hadn’t read this since it came out in 1996. It had a lot of extra resonances for me this time through. I gather it was written after his diagnosis as HIV positive. (Fortunately his Wikipedia entry only has a birthdate after his name, so I gather he is still with us.) Dessaix vividly describes how receiving a diagnosis of a serious medical condition throws one’s values and plans into disarray.

One of the nurses was interested in it. I tried to explain that the book purports to be a series of letters written by a character strongly resembling Robert Dessaix, who is travelling through Italy and Switzerland after receiving a life-changing diagnosis. Night letters is both an epistolary novel and a memoir, and a great example of both genres. It has some playful mock-academic apparatus in the form of a “translator’s” foreword, and three lots of end-notes. If this all sounds bit drearily post-modern, have no fear — the narrative pulse beats strongly throughout.

My tablet is running out of charge, so I am going to press “Publish”.