We had our consultation with Jeremy this morning. As discussed, the focus was initially on the PSA test I had done on the 12th (this being about 6 weeks after the operation). The level was 0.9, whereas the previous test (prior to the surgery) had been 9.9. Obviously the former seems a lot better than the latter. Following a prostatectomy, however, the desirable level is 0.0. So anything higher than 0.5 confirms some residual disease. The question is, where? Another scan is required to locate and determine what is going on. I am therefore going to have another whole body PSMA/PET procedure at the Alfred – they are going to ring me to set this up. This will probably be in January.

While it is slightly disappointing not to be home free, I didn’t actually expect the test result to come back zero. So as far as I am concerned, it is not as bad as it could have been. If the disease is within the pelvic area, radio therapy can be used (see no. 3 below). Jeremy is always keen to point out the positives:

1. I have had the optimal first treatment, i.e. the prostatectomy. (Jeremy said last time this would have removed 99% of the cancers.) Therefore we are not in a rush to determine the next treatment.
2. The disease is PSMA-avid. This makes it easier to see it because it shows up on a PSMA-PET scan. Easier to see means that
3. Stereotactic radio therapy can be used. This is a specific kind of RT with much lower side effects. A 2016 study of stereotactic body radio therapy found “a 98.6 percent cure rate with SBRT, a noninvasive form of radiation treatment that involves high-dose radiation beams entering the body through various angles and intersecting at the desired target. It is a state-of-the-art technology that allows for a concentrated dose to reach the tumor while limiting the radiation dose to surrounding healthy tissue.”

I also saw Susannah the physio this afternoon. She is encouraging me to become less reliant on pads. (The urinary continence has certainly improved since I saw her last.) She said that going pad-free speeds up recovery of more normal levels of continence, and is better for the perineal region. Obviously I will be selective about when I do this, e.g. not while engaged in activities that cause leaking, while I have people over, etc.

I have a new exercise to do, which involves bending over to pick up a 2 kilo weight. I am to do this 15 times. (Needless to say I will be engaging the pelvic floor the while.) The aim of this exercise is to teach the muscles greater endurance. I will check in with her again when I know the date of the PSMA/PET scan.

It has been very hot here, about 37 at one point. The change has come through and dropped the temperature to 23, with some rain.

Here is my new (to me) Technics tuner …

This is the reason that I defected from Blogger to here. I attempted to upload this image to the old Blogger blog. Nothing. Well known fault. Well, I am too intolerant of things not working. I ain’t got time!

I have decided to stop listening to digital radio, FM sounding a lot less artificial. This is made possible by the fact that we are sitting near the top of a ridge with good sightlines to Mount Dandenong, where a lot of stations have their transmitters. Anyway, I had quite a happy hour or so in the Melbourne Hifi Exchange browsing among the vintage FM tuners. There is a great site called fmtunerino.com which has reviews of hundreds of tuners, and which I referred to before and during the visit. There was a nice looking Marantz tuner, but unfortunately this had sold. Some tuners are “collectable”, i.e. people buy them for their looks rather than their performance. I finally selected a Technics tuner which was quite well reviewed, looks the business, but isn’t collectable and thus was reasonably priced. Here is a comparo with the most favoured tuner http://www.fmtunerinfo.com/shootouts.html#ST-8080 . The guy plugged it into his stereo to demonstrate it, and a fellow customer held up the ribbon aerial for me! (I swapped notes with the latter about having his Luxman tube power amp fixed, which sounds like a similar model to mine. Having been through it and parted with a fair chunk of cash, I was able to advise him, as per the Nike ad, “Just do it”.) The place is really more of a hobbyist hangout than a proper shop, but all rather good fun.

This might work now that I’ve put new batteries in the keyboard!

I know I can appear a little obsessed at the moment with knocking the dew off the lily (see previous post: and do pay attention!). However, if one goes from never thinking about urinary continence, to its being actively a problem, it is quite a transition. One can start avoiding social activity, because it can lead to embarassment. And you all know that social engagement is a marker of health.

These thoughts were prompted by seeing the physio from Jeremy’s practice this morning. I had seen this lady previously to learn that I did have a pelvic floor, actually, and I had to get it into shape for post-operative duty. (At the risk of repeating myself, these muscles have to take over urinary and faecal continence from the prostate.) So this was a follow-up visit. I had a fairly mixed report card to relate. I have been able fairly much to engage the PFMs when getting up, and for long enough to reach the bathroom. Sneezing, coughing, laughing etc. are all pretty well under control. However, standing up for any time definitely brings about leakage. The habit of pre-emptive loo visits to head this off is to be discouraged. (The idea is to get back to going when the need arises, and holding on between.)

This consult was encouraging in giving me some techniques to practice and develop that will help bring this about. The physio also reminded me that PFMs, like any other muscle, get tired, particularly toward the end of the day. It was a judicious mixture of encouragement and stuff to concentrate on. I am liking this team approach to medicine, where after the specialist does what they uniquely do, their team gets the patient back to full functioning.

OK, time for another select list of sinful synonyms. This time, featuring an activity dear to the heart of anyone who has had a prostatectomy. To make it more interesting, you can guess what the activity is. A couple of clues to keep you going:

• Urologists primly refer to it as “voiding” (as you will see, not for any want of alternatives); and
• It has been alluded to in several blog posts, especially those featuring incontinence pads.  

OK, enough preamble! Most of these are rhyming slang. Here they are:

1. Arthur Bliss (one for the musical cognoscenti);
2. bangers and mash; 
3. bubble and squeak;
4. Christopher Lee;
5. cousin Sis;
6. dingo’s breakfast, AKA swaggie’s breakfast (in Partridge’s succinct gloss, “an act of urination and a good look around”);
7. fiddlers three;
8. goodnight kiss;
9. lemon tea;
10. Lilian Gish;
11. Mark Ramprakash (one for the cricket fans);
12. mimi (yes, lower case “m”: according to Partridge, “from the Maori”); 
13. peter heater (act of urination in a wetsuit).

Honourable mention must also be made for

• knock the dew off the lily; and
• couldn’t organise a urine sample in a golden shower (according to Partridge, “used of an inefficient person or organisation”).

Just to prove that too much is never enough, I love the joke from Garrison Keilor about the young lady from the midwest being shown around a historic home. She enquired about the feature on top of the antique four-poster bed. Guide: “That, madam, is a canopy”. Young lady: “Oh, at home we keep those underneath the bed”. 

Well, after a week of thirty plus temperatures it’s rained for two days solidly. Victoria is supposed to be getting a month worth of rain in three days, and it feels like that. (It is really coming down now.) There have been eight people, from memory, admitted to hospital after falling off ladders. (Clearing out the gutters is a good wheeze, but not if you injure yourself in the attempt.) I hope no-one is getting flooded out among my extensive readership.

We set off on a shopping expedition this a.m., about which I am enjoined not to say too much, other than that it was successful. Then a quick whiz around Coles for mineral water, proper milk (the lactose free kind tastes a bit peculiar in coffee), rice cakes, Nuttelex and other staples. En route home we stopped off for a couple of pies, which we had for lunch with a baked potato and some green beans.  I was happy not to venture out after this in the rain and general pre-Christmas hysteria. Then a bit of cricket and a lie down; this is supposed to be good for encouraging healing in the abdomen.

On tummy-related matters, we are having a totally low key Christmas, neither doing anything nor going anywhere. The food at one of those banquets, e.g. at a hotel, is generally bad for der Fisch, and the whole thing is generally rather drawn out and tiring. The sisters do a wonderful job having the family around on the day; in recent times my niece has drawn the short straw, with equal success. I am still getting on top of the urinary continence, however, and standing by to hear what the next treatment might be following the PSA test I am to have mid-month. I am happy in the circumstances, therefore, to skip the travel on crowded roads and have a ham sandwich with my beloved. Both introverts, we can rise to the occasion for large group get togethers, but quite irrespective of the personalities involved, these can be draining when one is Not Quite Right.

Outside (3.15 am) it is 13 degrees and 95 per cent humidity! I have never seen a humidity number that high. Am taking a break from Godel, Escher et al and reading American kingpin, by Nick Bilton (about the man who founded The Silk Road web site) and an interesting essay about Phillippa Foot .

This post might seem like a bad idea when the first flush of enthusiasm wears off. It is just me playing around with language, looking at an Icelandic dictionary, and trying to find words that express concepts ranging from the elusive to the mundane.

In the list below, the (real) Icelandic word or phrase is followed by the (mostly fictitious) definition. There are, however, a couple of accurate definitions, according to the online dictionary. See if you can spot them! A lump of decayed whale meat (hvalur kjöt) to the first correct entry. The winner will be notified by email. Any native Icelandic speaker, their family or employees are disqualified from entering this competition.

1. Fýlusvipur Someone who says they’ll referee you for a job, but ends up stabbing you in the back. 
2. Fyrirvaralaust A stuff-up so monumental you need to go to Australia [obs.?]. 
3. Fyrirvinna As above, but less egregious. Female gender. 
4. Fyrr skal ég dauður liggja I’m taking Gary to a party.
5. Glópagull The chutzpah needed to eat a beetroot salad while wearing a white shirt.
6. Hákarl kjálkabeininu Shark cartilage.
7. Hugarangur Existential anxiety of receiving a man hug. Male gender.
8. Hugarfarsbreyting Fear of farting while receiving a man hug. Ditto.
9. Skemmd Uniquely virulent hangover from too many acquavit skols. See angst.
10. Smithætta Female descendent of Smith.
11. Stjórnmálaíhlutun Impressive sounding medical term you use when ringing in sick.

After Tuesday’s meeting with Jeremy, and the intense digestion of the information that produced, it is very pleasant to have a few low key days with nothing very notable to do. Things that there are to do are mostly culinary,  marking my gradual resumption of responsibilities in the kitchen. (Cliche alert: Jill has been doing a sterling job, ably stepping into the breach, taking up the slack, etc. Glad I’ve got all those out of the way! They are all true.)

This morning, after some watering, I decided to have a go at a banana bread recipe with which I have had some success. This actually turned out to be a banana and pear bread, as I only had one ripe banana. Anyway, it seemed to come out pretty well. It was rescued from disaster by my remembering that the flour was plain, not self-raising as labelled on the container. So I just added a couple more teaspoons of baking powder, and it rose nicely.

We will have that following lentil soup and beetroot salad; I haven’t started the former, but have cooked the beetroot for the latter. (Pressure cooker to the rescue.) I am hoping the weather will be a bit cooler by then; lentil soup is not really a summer dish, but Jill requested it, and it will suit the requirements of the party. (Our niece is staying with us, who is vegetarian.)  I have been doing stuff for the meal intermittently, there being plenty of time.

The main problem, while I was shopping, was finding capers, required for the salad. Woolies seems to have gone out of them; I had a good look in the section where you find olives, artichoke hearts and so on, but no capers. I then asked about them in the deli, and someone came and looked in the same section as I had, to no avail. Fortunately the market was open, and the deli there had a choice between salted ones and those in vinegar. (The latter were recommended.) Capers are one of those things that is difficult for which to think of a substitute. In days of yore I used to make a pasta sauce with them and sun-dried tomatoes. Could there have been olives as well? Surely not! Anyway, it seemed pretty good with parsley and parmesan cheese on the pasta. It all sounds a bit “more is more” now; such were the days before my beloved’s food intolerance diagnosis.   

Der Fisch and I had a follow-up session with Jeremy this morning. We both thought it went very well. Neither of us was exactly looking forward to it, but we both found it encouraging.

Following is a list of the points that were covered. This fairly long and technical. For those who don’t wish to read it all, and I sympathise, the essential point is that I need another PSA test to determine what happens next. This will occur in mid-December.

Re this list:

• The first two points are not new information, and are thus tagged.
• The entire list will be mostly old news for the family member who has received this information by email. I have pretty much put new information in italics to save them a lot of repetition. 
• I made the mistake of dumping all the text in from the email, only to find that that all the messages above it in the in-box ended up in this post also! The only way I could get it even this good without re-keying it all in was to copy and paste that text into  various document formats, until I finally found one that stripped out all the formatting (.pdf). Then I was not able to use second level numbering as the email editor had provided. Anyway, I have done the best I can with it.

Anyway, here goes.

1. The PET/MRSA scans had revealed a cancer in the prostate and in one of the lymph nodes (old news).
2. The biopsy post-op revealed cancers in three further lymph nodes, which had not shown up in the scan. This is because they were quite small (more old news).
3. Consequently the chance of a cure is remote. (This is based on the proven ability of the cancer to metastasise, in this case to the lymph nodes.)
4. However, Jeremy estimated that the surgery removed 99% of the cancers. Because all the ones visible on the scans have been removed, and a few besides, any remaining ones should not be problematic for some time because they must be pretty small.
5. Two things have been achieved by the surgery: a) a de-bulking of the cancers, and b) improved local control of any that remain.
6. The next step depends on the PSA test which I am to have in mid-December. Depending on the numbers this returns, and how the urinary incontinence is improving, treatment from here could involve 
1. another scan (if the numbers indicate something is still afoot)
2. Androgen deprivation therapy (ADT)
3. External beam radiation therapy (EBRT)
4. a combination of the above (used successfully in metastatic lymphatic cancers like mine)
5. watchful waiting, i.e. doing nothing and just keeping an eye on things. Should something take an uptick, action will ensue.
7. Without further PSA data, he is reluctant to go ahead to give pelvic EBRT, or initiate ADT, because he doesn’t know what he is trying to get rid of, where it is, etc. Also, of course all treatments have side effects, and he is reluctant to risk these without a specific reason.

I asked several questions, three of which were to do with treatment (1-3 below):

1. Question: is your treatment objective to manage and contain the cancers rather than cure them? Answer: Yes, this is the most likely outcome.
2. Question: is a combination of ADT and EBRT appropriate for this cancer? Answer: possibly, but more data is needed.
3. Question: Can EBRT increase the risk of bladder cancer? Answer: yes, but the risk is small.
4. Question: is chemotherapy used in treating prostate cancer? Answer: yes, but only for confirmed PSMA (prostate specific membrance antigen) metastatic disease. Its advantage over other treatments seems to be fairly small. [My reading: he wants to try the other stuff first.]
5. Question: when will the urinary incontinence settle down? Answer: probably after several months. Keep doing the PFM exercises.
6. Question: is there anything wrong with the occasional blood clot in the urine? Answer: No, this is quite normal. Just increase the fluid intake when blood appears.
7. Question: will other specialties (oncologist, radiation oncologist etc.) be brought in if required? Answer: if EBRT is thought to be appropriate, I will be referred to a radiation therapist. However, there is an interdisciplinary round table at Jeremy’s practice where difficult cases are discussed among a bunch of different specialists. He thinks mine could benefit from this.

I felt all questions were answered respectfully and without any impatience at my becoming an instant “expert”. I look forward to the next time we meet, when he will be sans the moustache he grew for Movember!

Today we go to see Jeremy for a follow-up session. I won’t have seen him since the operation (apart from him dropping in briefly at the hospital a couple of times).

Wanting to be a more informed consumer of medical services, I have gone through the notes I took from the information session at the Peter Mac last week and written out some questions to ask. In so doing I also looked at the PCFA Research Blog and found a recent paper that looks relevant. (The link to the blog page won’t resolve unless you are logged into the PCFA, but the abstract is on PubMed .) This seems positive in that ADT (androgen deprivation therapy, AKA hormone therapy) + EBRT (external beam radiation therapy) were found to give the best overall survival rate. Subject to my next PSA test, this is the therapy that Jeremy mentioned.

I am uncomfortably aware of a desire to impress or otherwise gain his approval. I suppose this is not unexpected, given that the treatment he suggests will have a material effect on how long I am around for. Of course he would suggest that treatment regardless of what questions I ask, his feelings toward me personally, etc. (I know all this rationally.) In person I have alway found him calm, approachable and pleasant, just what you want a surgeon to be. Oh well, I will just try to stay positive and take notes! (Sounds like one of those British WWII slogans.) I will share the findings of this session and those from the next PSA test, due mid-December.

I added an entry in the External Links in the sidebar for Harvard Prostate Knowledge, a site mantained by that university’s medical school and Harvard Health Publications.