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SNAFU wins the race

by feurmann

Well, as as a character says to another in The upside of anger, that was a mis-step. In the last post I attempted to convert the blog to private. The problem was, as a few intrepid followers found, that locked everything up tighter than a fish’s whatnot. Even I, as the blog founder, had difficulty logging back into WordPress to get things how I wanted them. The notification settings seemed mysterious. (I say “seemed” because I didn’t get to see the outgoing message that was sent to everyone I invited to become a viewer. This message obviously didn’t explain how viewers could be notified when I had posted new content to the blog.) Few people are going to come back and check in case I’ve updated the blog — something that’s become less frequent lately. (It’s possible to sign up for email updates, but I know some people haven’t been able to get this to work.)

Anyway, for those people who requested email updates, I will keep sending you those. I will post those also to the blog.

WordPress has no real half-way setting between “Open” (i.e. anyone can discover the blog) and “Private”. (The only one was something that “encourages” search engines to omit the blog from their search results. However, as WordPress pointed out, this depended on the search engines actually doing the right thing.) Oh well, just chalk it up to experience. Carry on irregardless, soz for that, and happy Easter!

Change to blog settings

by feurmann

From now, I have made this blog private. People who want to view and follow the site will not be able to do so unless I invite them. People I invite (and who accept) will need a free WordPress account to view the site. It will be necessary to log in to WordPress to view the site.

There don’t seem to be any people registered to follow the blog. (I know people have found this difficult to do.) However, I will invite people who I know used to follow it. If anyone is unsure about taking out a free WordPress account, my experience with them has been positive. WordPress has hosted the blog almost from the beginning, and I have very seldom been contacted by them. (Emails I have received have always been about changes to the blog editing software.) So, as far as I am concerned, they are a reputable company.

I will email family members with the content I am putting up on the blog (including this post) so they can follow it that way if that is their preference.

Best Xmas present yet!

by feurmann

I mentioned previously that I was scheduled to have a CT scan of the thorax, abdomen and pelvis and an isotope bone scan. These were done about a week ago. This morning we duly trooped off to Dr P to see what (if anything) these had revealed.

Basically, they found nothing new. To quote from the report, the bone scan found “[N]o clear evidence of bony metastatic disease”, and the CT scan found ” … no features at the level of the pelvis to suggest local soft tissue recurrence”. So, nothing to see here. The PSA has crawled up to 2.3, but Dr P wasn’t worried by that and said he was very happy with how I was going. I will continue on the Zolodex for the time being, depending on future tests. (I had another Zolodex as scheduled, after seeing Dr P.) Appointments were made to see the good doctor and for my Zolodex implant in March, 2021.

I will send this off now and rescue a load of washing from the machine! I hope everyone has a safe, unmemorable and uneventful Christmas.

Staying in touch

by feurmann

Yes, it’s Christmas again. As well as red bows around street trees, incessant carols in supermarkets, and gift catalogues, you know the season is under way when the first Christmas card appears in the letterbox.

In earlier decades, my intolerant, black-and-white younger self couldn’t see the point of sending a bunch of cards each year. Either you’re in touch with someone anyway, I thought, or you’re not. If you’re not, sending them a card every year isn’t much of a substitute.

It’s a mark of maturity (or selling out, whichever you prefer) that the annual ritual starts to make sense. Some people that you would like to be in more frequent contact with are just not close enough at hand for that to happen. As those people get older, as well, they acquire families and other appurtenances that push everyone else into second or third place. This is all inevitable and just the way things are. So getting a card each year provides that particle of reassurance that someone is thinking of you, even though you haven’t spoken to or laid eyes on that person for a while.

Australians move house, on average, every seven years. Our increasing mobility, new communications technologies, and the increasing demands of paid work all contribute to the fragmentation of relationships. (Recent events like a couple of bouts of lockdown only amplify this tendency.) The absence of social connections has been identified as a risk factor for an impressive range of physical and psychological ailments. A few dozen cards on a mantelpiece, the top of a piano, or wherever signify that, in spite of all the things separating us from our families and pals, we remain socially plugged-in.

There is, of course, a reciprocal principle lurking not too far beneath the surface. As that great philosopher and baseball coach Yogi Berra remarked, “You don’t go to their funeral, they don’t come to yours”. So it is that my beloved and I gear up for the annual Christmas card sendathon.

Our modest effort pales by comparison with my parents’ yearly communication blitz. Writing their Christmas cards seemed to take them the best part of a day. The bridge table was set up, cards, envelopes and stamps stacked in piles, and a serious list was worked through. Names were culled, and others added when, after several years’ silence, these lurkers sent them a card. Of course every one of the cards Mum and Dad sent was hand written — none of this wimpy Christmas Letter stuff! (I must confess we have resorted to that for the last few years, family members excepted. I think of it as our Annual Report.)

Unlike HMQ, I don’t have a Christmas Message. (No offence, but I will know I am really past it when I start looking forward to that!) I just hope that everyone reading this gets what they want, not just on Christmas Day, but as often as possible. Not too much, of course — just now and then.

Post for 23 November 2020

by feurmann

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).

More, but not in a bad way

by feurmann

Note to family members — this post doesn’t contain any information that wasn’t in my last email message.

We saw Dr P on Monday, to get the unwelcome news that the PSA was up at the last test. However, the current level is 0.3 — still obviously less than 1. When we found this out, we were somewhat daunted. Our feeling was “a rise is a rise”. The consult didn’t allow us time to process the information or ask what it meant. However, on the advice of Dr P’s PA, I sent him an email with some questions. He rang me back the same day and I learned a lot more about it. The new information:

  1. the increase I had had was not a rise in clinical terms.
  2. He would be worried about an increase of a much bigger trajectory, e.g. if it was
    measured in whole numbers (integers), and doubling in 4 weeks. So, for example, if I had a PSA of 5.0 and it went up to 10.0.
  3. Increases in fractions of 1.0 aren’t really accurate anyway. (This information is given in a disclaimer on  printout from the path company — a copy of which Phillip gave me on the day.) So, while one may worry about going from 0.09 to 0.3 — an increase of 0.21, which is more than double the first score — it’s a mistake to read too much into that increase. At that quantum it’s not really meaningful.
  4. He doesn’t look at the number itself, but at the velocity of the increase. (This goes back to #2 above.) A steep increase is most undesirable. But if it just grumbles away, as he put it, and increases gradually, that’s not alarming. Scores can move around, particularly under 1.0.
  5. One of the things he teaches his students is not just to look at the PSA, but look at the whole person. Do they feel (and look) well and healthy? On that basis, I am doing very well.
  6. One of the questions I had sent him was whether I would need to move to another treatment (e.g. another round of chemo). He doesn’t think that will be necessary for some time (see below). The longer we can delay my moving to a second-line treatment, the longer I’ll live!
  7. These are the answers he gave me to the questions I had sent him:
    Does he believe the cancer is progressing? No.
    Is he worried at the last increase? No.
    Is he expecting that I may need to move to a different treatment? Possibly, around the end of this year.
  8. He reminded me the treatment I am having presently (androgen deprivation) is Plan A. It has an expected maximum life of about 24 months. (I started it around Christmas, 2018. I can’t recall exactly, as it started as adjunct treatment with the chemo. The latter definitely finished on Boxing Day, 2018 — that I do remember!) Beyond Plan A, however, he has Plans B, C, D and E.

So the whole exercise was quite reassuring. He hadn’t realised we were worried — to be fair, we were wearing masks, which may have made it more difficult to read our expressions. Anyway, I will be talking to him in about 5 weeks, after the next blood test.

There is a lot of ambiguity around PSA. As I commented before, people look for certainty, and want a simple test to see whether they are doing OK or not. There is a temptation to simplify:  low PSA is good, high PSA is bad. As you can see above, it is a lot more nuanced than that. Dr P thinks PSA is a really useful way to see whether someone who has been pronounced cancer-free has suddenly relapsed. It is a less useful measure for someone like me in whom the disease is continuing.

However, I think medicos are partly responsible for this fetishising of the score. For the first half dozen or so consults this year, Phillip was very enthusiastic about my having PSA that was undetectable. He seemed different in the last consult, and I read a fair amount into him being much less effusive than usual. I can see I drew the wrong inferences, but then, I’m not an oncologist.

I believe situations like this arise because experts find it really difficult to remember what life was like before they became experts. Their knowledge gives them an incredibly rich context in which to interpret things. Can they meaningfully ask themselves the question “How would I interpret this if I didn’t know what I know?”. It’s an almost impossible task. Also, people join the dots in an attempt to find a “take-out” message.

My take-out from this? If in doubt, ask questions. There’s no statute of limitations — you can ask questions that occur to you after the consult. (My beloved prodded me to do this, and it was the right thing to do.)

Isolation day 45

by feurmann

No-one plans to fail — they only fail to plan! Apologies for the old chestnut, but it serves to introduce something I’ve been meaning to put up here. This is our little system for listing and marking off stuff that we want to get done. I am particularly vague at present, so having a way to capture these things is something I find helpful. Otherwise projects just tend to get away from me — I think of things, then forget them, only to remember them later on, and so on. Anyway, here is our little “whiteboard”.

img_20200426_094332559

It is a simple idea that I came across somewhere or other. There are three categories, in columns:

  1. Tasks; 
  2. In progress; and
  3. Done.

With the Tasks category, you will see there are two sub-headings: Courtyard and Front Garden/Driveway. This category is where everything we want to get done is listed. Projects are written up on post-it notes. (I find the small ones work the best.) As one works through them, the projects move across the board from left to right. If projects stay In Process for too long, they may need a final push to get them done. 

The idea of using post-it notes to record the projects was my idea. This saves writing and erasing things between the columns as tasks progress. (One could colour-code the notes — if one could remember what the colours meant.) Why list completed tasks under Done? I think it’s encouraging to see things that one has actually finished. Otherwise it can feel discouraging to have tasks hanging around for ever. This way one can see what projects have been accomplished, and can be marked off. Some projects, like “Sweep”, are never ending. This one will return to Tasks the next time it needs doing.

These things are recorded on a giant fridge magnet that I got from a newsagent in Camberwell Junction. I used to keep this on the side of the fridge. This was just a bit out of the way, however, so I put it on the front. I need a reminder that is hard to ignore.

Isolation day 34

by feurmann
  • Glad we did all the work in the courtyard yesterday (including a couple of loads of washing); lots of rain overnight. By the time we got up this had eased, just leaving a typical overcast Melbourne autumn day. Perfect! Having not been beyond the gates yesterday, I ventured out for a walk mid-morning.
  • Home for a second coffee, a look at the rest of The Age, and attending to some business. A friend is trying to learn Zoom; she has the disadvantage in this of not having a webcam. Is it even possible to use Zoom without one? Apparently it is; people lacking this bit of kit (or a camera built into their device) can view video from other participants, just not transmit it themselves. So they can be heard but not seen. Anyway, I sent her an invitation to a Zoom meeting with this information appended to it.
    • Of course it is possible to use Zoom on a smart phone, and transmit video via its built-in “selfie” (front facing) camera. However, that has the drawback of only giving the phone user a fairly small screen to look at. I imagine this is more of a drawback the more participants there are in a meeting.
  • I joined up for my next lot of exercise physiology classes. I could have just done this over the phone with a credit card. The practice, however, had sent me an invoice at my request. (I like to have a bit of an audit trail in case a payment doesn’t come through, goes to the wrong account, etc.) So I paid the invoice via bank transfer, and sent the practice a notice of the payment via email. This is not a remarkable thing to do at all, of course, but I still marvel at how technology enables transactions like this.
  • On the subject of everyday technology, one device that has been getting a bit of a workout recently is our Epson inkjet printer. This has been invaluable just recently for printing invoices, drafts of things I am working on, transcripts of chat sessions, and so on. My beloved had to print out a 10 page document (or so) for her work recently. Like all such things, the device is pretty cheap, the cartridges outrageously expensive. Third party ones work perfectly well, in spite of the nagging screens they generate, reminding you that you’re not using genuine Epson products, and so on. It is also a scanner, which has also come in handy recently.
  • Some of the things this technology can do are pretty nifty. I had heard some excerpts from Tosca a while ago, which I had enjoyed. So I found a recording of excerpts from this opera on Google Play Music, started playing this in the living room, then was able to send this audio stream to the kitchen when I had to go out there to make dinner. It just picked up where I had left off. All via the magic of the Chromecast.
  • The same device casts video to the TV from Stan in a particularly seamless way. Of course it works also with the ABC iView, Kanopy, and SBS On Demand apps, to name but a few — just not quite as elegantly as with Stan. (I’m not getting any commission for these various endorsements, unfortunately.) We are nearly at the end of Deutschland 86.

Isolation day 23

by feurmann

Spoiler alert — some of this post is based on an email. We are all recyclers now!

I have always found Easter a tricky time, somehow. We always used to get to Easter Saturday and think “Okay, so what happens now?”. It’s still challenging, but for new reasons.

Yesterday started out perfectly, with an Easter egg from my beloved. It deteriorated, however, after a couple of culinary implosions. I baked a couple of loaves, from a recipe I have used many times, but they both sagged in the middle. Had we not been watching Deutschland 83 at the time, I might have given them the extra five minutes they probably needed. The rotten things wouldn’t even slice properly. I struck back by putting one loaf in the fridge, to slice up the next morning when it was a bit stale. (This actually worked well; I must remember it for saggy loaves in future.) The second loaf I put in the freezer.

Later, I was cooking lamb shanks for dinner in the pressure cooker. These shanks were about the biggest I had ever seen, and I couldn’t fit them all in the cooker. (I had to reserve one, which I cooked in the wall oven the next day.) At the end of the cooking time, when I opened the pressure cooker vent, a hideous amount of white fatty stuff spewed out. This sprayed all over the tiles, the toaster, kettle and so forth. The cooker must have been a bit full, and the shanks were pretty fatty, so this eruption was fairly undesirable! When I made my toast this morning, the corner was still faintly redolent of lamb shank. I left the top of the cooker soaking in a detergent solution so that the pressure valve wouldn’t be gummed shut.

What made it even worse was that I had cleaned up that very corner of the kitchen a few hours before, after using the pressure cooker to do a batch of chickpeas. (That earlier emission was only steam, but there was rather a lot of it, and it condensed on the benchtop, in the top of the cooker itself.) Over the last few weeks I have been using the cooker as a kind of Swiss Army knife in the kitchen. As well as chick peas and shanks, I use if for rice, various soups, steaming vegetables, and so on. I see I will have to resort to the stovetop and convection oven a bit more.

This morning started out better, scoring a goal in the IT support stakes. Along with her laptop and proper keyboard, my beloved had brought home a huge monitor from work weeks ago. After some experimentation I was able to hook this behemoth up to the laptop. This rig now takes up most of the dining table. I even connected her laptop to our printer, through our wifi. She did a morning’s work, then had a lamb shank, potatoes, and greens. (Yep, the one that wouldn’t fit in last night.) I took the meat off one of last night’s shanks and put it in some vegie soup that I had made a day or so ago. (Yep, in the pressure cooker.)

We watched an episode of Escape to the Chateau while we had that. (The show turned out to be one we had seen before — Channel 9 is putting them to air in seemingly random order.) The day turned out lovely and sunny, but I just felt more and more out of it. My sleep has been disturbed for — a week? two? I really can’t remember. Anyway, my beloved went back to work while I went and slept, only for about 45 minutes. This little sleep was really refreshing, though, and I felt much more positive.

In this vein, I stumbled across a short video on The Guardian by a psychologist, Lea Waters, about how to encourage positive thoughts and feelings. Finding this was fortuitous (and fortunate, in that I was feeling particularly lousy). Anyway, I recommend it. Some of the things she talks about:

  • giving yourself a break from the information overload about the pandemic;
  • making a playlist of songs that have positive emotions or lyrics (OK, I didn’t do this);
  • thinking about times when you were happy (apparently the brain is not good at distinguishing between past and present, and you might fool it into being happy now);
  • looking for things in your situation for which to be grateful; and
  • talking to the people with whom you are in isolation about things that you are enjoying reading, listening to, or doing. 

If this all sounds a bit happy-clappy to you, well, go on enjoying being a misery guts! It’s a free country. I can say, though, that I felt better when I did some of the things mentioned above. A walk with my beloved down to the park was a help, too. I am grateful that I have her to go for a walk with, and told her. And the day stayed sunny. 

All of this emotional stuff is stirring things up creatively, a bit, though. I wrote a poem yesterday that I am still fiddling with. (It’s about trams — I should call it Saved by the bell.) And on my way home I made a note of a couple of lines that came to me, that I expanded and scratched around with when I got home. Yep, I remembered to take the notebook on our walk. Tomorrow will be another sunny day; there will be sheets to wash and a Zoom exercise class. Talk about the universe in a grain of sand!

 

Isolation day 21

by feurmann

Yes, past the three week mark today.

It was a bit of a weird day, but good. I know readers find our routine as fascinating as we do, so you will remember that we normally go for a walk after breakfast — particularly if the sun is out. This morning was unusual in that my beloved wanted instead to do some weights, then some gardening. So we both did an exercise program, then some weeding and pruning in the front garden. I thought I might get the towels dry, so while we were so occupied, I put a couple of loads of washing on. Of course the change came through early,  as soon as I’d hung everything out. So I had to haul the towels back in and put them in the dryer — something we rarely use. (I generally just put them on clothes racks, which are positioned over heating vents.) 

After lunch my beloved passed out for a few hours, and I played Act 1 of Parsifal. This is obviously a suitable choice for Easter — the Good Friday music in Act 3 is one of the most beautiful passages in the opera, and indeed in Wagner overall. We had seen a concert performance of this opera a couple of years ago in Sydney, with the incomparable Jonas Kaufmann in the title role. I’m so glad we went to see him. Around that time he announced his intention to not travel so far from his base in Germany. Of course, for the foreseeable future, I won’t be travelling anywhere, so I may not get to see him again. This was one of the best opera performances I have seen. The SMH critic, Peter MacCallum, gave it 11 out of 10. (Kudos, BTW, to my former music teacher for arranging the tickets.)

Parsifal is of course Wagner’s final opera, and one that I recommend for anyone for whom the Ring Cycle is just too drawn out. Someone observed about Parsifal that it is an opera about religion, rather than a religious opera. I think that is true. It examines Christian values such as compassion and redemption, but in a rather detached way. More importantly, the music is luminous, exquisitely beautiful, and scored with great transparency. I played a wonderful recording made at the Salzburg Festival in 2013, conducted by Christian Thielemann. (This is made more poignant for me by the death a few years later of the lead, the South African heldentenor Johan Botha.) 

When my beloved surfaced, she had a late lunch, and we watched Fake or Fortune. It was time then for a drink, the ABC news, and another Deutschland 83. During the last of these the wifi started slowing down occasionally, although only for a few seconds. This was the first time I noticed this happening since we had switched over to NBN about six weeks ago. Last week the laptop in the study disconnected a few times from the wifi. After reading some Telstra discussion list messages, I went to the settings for the NBN modem router and switched off the band steering. (This allows the modem to switch between 2.4 and 5 GHz speeds. The latter is obviously faster, but can be problematic for devices further away from the modem.) I switched the setting back on again, in the hope that this will reduce these slowdowns. No doubt, with everyone staying put for Easter, everyone is streaming Stan, Netflix, and so on all at once.