Artists and parasites

Whether republicans or monarchists, we are all supporters of the GG (Guy’s Gut). So I knew you wouldn’t want to miss any twist in the tale. The final act of the drama unfolded like this:

  1. 11th: Saw GP A — not my regular one, who was unavailable. She gave me a pathology test kit, just in case I had something more than common old gastro. I dropped this off at a path collection point a few days later. When I didn’t hear anything about it, I assumed it didn’t show anything unusual. (The practice doesn’t contact patients about path results except if they show something urgent or out of the ordinary.)
  2. 18th: Felt worse over the weekend, so saw GP B (my regular). He rang the path lab. The test he was hoping GP A had requested, she hadn’t requested. So he asked them “Can you run an XYZ test on the existing samples?”. Yes, they could. On what I told him and my treatment history, he went ahead and diagnosed a likely Giardia infection. He gave me a script for Flagyl (an antibiotic) and a few other bits and pieces. I had to take the Flagyl for 3 days: no grog (haven’t been having any anyway).
  3. 20th: After having the Flagyl over the last 3 days, I felt dramatically better! GP B had hit the bullseye — good on him. Normal energy, appetite, number 2s, the works. As far as I am concerned, case closed. However, later that day, I got a message from the practice to ring them. I needed to make an appointment with GP A to discuss the test results (remember them?). I made a time for the following day.
  4. 21st: GP A told me it wasn’t Giardia after all, but Aeromonas. Apparently this is a more unusual species of bug, mainly seen in travellers. Same treatment, but it is less likely to recur than Giardia. (This is because the Flagyl kills the Giardia parasites, but not their eggs. A recurrence of symptoms after two or three weeks is therefore possible.) She recommended a probiotic to restore some of the gut flora that the Flagyl will have knocked out. Oh, and I am still off the grog for a few more days.

The most important thing: I feel normal. Today I walked nearly 13,000 steps (about 9.5 kilometres). Appetite, energy levels, and all functions back to normal.

I am re-reading The master, by Colm Toibin, for a discussion group on Saturday.  (For those who haven’t read it, this is his novel about Henry James.) When I checked the publication date, I was surprised to see it was published 14 years ago. I did my Honours thesis on James over 40 years ago, so when this novel came out, I was naturally interested to read it. I was impressed then with Toibin’s novelistic treatment of him, and I still am.

It strikes me, this time around, that there is a lot about social blindness in his treatment of Henry James. (Well, I have always thought of the concept as “social blindness”. An example of this is someone at a nude beach, who strenuously ignores the naked bodies in front of them. Of course, they are just as interested as anyone else would be. They are just not peering too obviously, to avoid the social stigma of being thought a pervert. Maybe someone can tell me what this is actually called in social psychological terms.)

In The master, James feels as if people can tell that he has — as he might put it — particular inclinations. (These crop up pretty early on, so it is no spoiler to disclose it here.) He loathes people inferring this about him, as anyone might. According to Wikipedia, homosexuality was a capital crime until 1861 in Britain, after when it continued to be regarded as a serious offence. Of course, no-one accuses James out loud! The niceties (social blindness) are thus preserved; the fictional James, however, feels vulnerability and shame.

With all these inferences and implications, Toibin infuses the early scenes of the book with a fair degree of tension. In this “faction”, James is portrayed as an observer of human behaviour. (Sargent’s portrait captures this aspect of his personality; as do the books.) That less fastidious people can apparently observe him just as readily adds an uncomfortable paradox. From memory, his sexuality is thought to be ambiguous. It appears that he renounced entanglements the better to write about them. The real Henry James was famously discreet in this as in all things.

 

No guts, no glory

I was originally going to call this blog post “Smörgåsbord”, and it’s not surprising I should have had food on my mind. I came down with gastroenteritis on Thursday, and since then I have subsisted mostly on dry toast, tea, water, and electrolyte drinks. Forays into peanut butter on the toast and lentil soup were unsuccessful. I have only been beyond the gates a couple of times since it all began; the excursion yesterday was to a GP in Camberwell. My loyal readership might think I am taking an attack of the runs a bit seriously to call in a medico. For those who have had immuno-suppressant treatments like chemotherapy, however, the recommendation I have read is to call in a GP if the gastro goes on beyond a couple of days. (This was also the suggestion of my oncologist Dr Parente, with whom I had a brief phone conversation yesterday.) So it’s not just me being a wimp!

A medication that Dr P recommended is called Gastrostop. This contains both loperamide, which helps the bowel contents to firm up, and another ingredient meant to reduce abdominal swelling (which can be quite painful). I can report that this combo works well. It is delivered via a chewable tablet, wherein lies its only disadvantage in leaving a bitter taste. (This may not happen for other people.) To get around this, I have been breaking the tablet up and swallowing it in water. When I did this this morning, I felt quite nauseated; fortunately, I wasn’t sick. This could have been related to my being unable to swallow the tablet fragments, and having to chew them after all. Maybe there is a reflex that makes you feel nauseated if you chew something you haven’t been able to swallow. For anyone remotely interested in how their tums work, I can recommend Gulp: travels around the gut, by Mary Roach. (The link points to the Boroondara Library service record.) This is a great piece of science writing. Just don’t read it in your lunch break: especially when she is talking about vomiting and elimination!

Further in this vein, a good source of information about gastroenteritis (which I sincerely hope you won’t need) is the Better Health Victoria web page . From this and other sources I learned that my gastro is viral, not bacterial. Bacterial is accompanied by vomiting and abdominal pain, and can be treated by antibiotics. Viral has neither of these effects, and can’t be treated by antibiotics, or anything much. The main recommendations here are rest, very plain food, water and electrolytes to replace the fluids. Paracetamol can help reduce fever, but won’t do anything for the gastro. (Something nobody points out — stay near a toilet — i.e. at home. And wash your hands every time you go. My beloved has so far not succumbed, although it is way contagious.) The BHV page is superior IMHO to the equivalent federal government one, which is well written, but contains some weird advice along the lines of “Eat normal meals if you feel hungry”. This is pretty much guaranteed to irritate the gut big time! Stick with dry toast, maybe chicken noodle soup, plain rice or noodles. Avoid coffee, alcohol, chocolate, butter, spicy food, and all other fun things. Some GPs feel that loperamide-based medications like Gastrostop prolong the condition by stopping you up, and thus inhibiting the virus from passing through the system. I tell you what, though — if you have been to the toilet ten times, a bit of stopping up starts to feel like a good thing! At the very least, if you want to get a half-way decent sleep, have one or two of these (as directed) before you go to bed.

Coincidentally with this happenstance, we have been down to one car (the GT) in which to get around. Someone ran into the Camry while my beloved had it parked at Chadstone shopping centre. (She wasn’t in it at the time.) Fortunately the driver of the other car left a note under her windscreen wiper, apologising profusely and including her contact details. After quite a number of phone calls, the mobile C-suite has a new bumper, paid for by the other lady’s insurance. Drop-off Thursday, recovered yesterday. (Fair play to the repairer, Capital Smart, for providing my beloved a free Uber ride home and back to the workshop in the wilds of Mulgrave.)

Things got faintly complicated when our insurer got involved as well. We had a comprehensive policy on the Camry at the time of the accident, and ended up paying them the excess on that policy for the current repair. (When our insurers are reimbursed by the other insurers, we should be fully refunded.) Before I got crook, I ferried my beloved around in the GT; fortunately she also had a couple of drives with me as the passenger. This came in handy when I couldn’t stray beyond the front door! She is a very capable driver, however, and got the hang of it in no time, looking very Agatha Raisin in her string-backed gloves and big sunnies. She ended up taking it out for quite a few spins, including a night-time trip to a pharmacy. We bought an automatic model partly so that we could both drive it, and this turns out to have been a good move. It is a very entertaining little device, and injects fun into the most mundane supermarket trip.

 

 

Better late than never

This hot weather we have been having in Melbourne has been giving a further boost to my general scattiness. That, and the lack of any new developments (and appointments over Christmas), have contributed to the absence of posts for the last few weeks.

I saw Dr P, my oncologist, on the 16th. (This appointment was, as usual, preceded by a blood test.) The main no-news is that the PSA continues to be undetectable. I had been told I was to have another Zolodex implanted that day. (This is the ADT drug that we hope will continue to keep the cancers inactive.) Dr P checked with the hospital; I had the previous one implanted at Cycle 5 of the chemo, on 5 December 2018. They last about three months, so I am not due for another one until 27 February (my next appointment with him). This fits in as, in the new regimen, I will be seeing Dr P every six weeks. So I will get a new Zolodex implant every other appointment.

Meanwhile I will also be having a scan, booked for 23 January. This will be a tracer-type scan, before which I have to drink a preparation containing barium. (I was issued with the preparation and instructions for taking it on the day that I saw Dr P.) As usual with scans, the purpose is to detect any unusual or unexpected activity. I have had one of these before without ill effect; I think I have had just about every type of scan commonly on offer.  I don’t mind what it is as long as it isn’t an MRI, which I find pretty claustrophobia-inducing.

My fingernails are showing one of the main side effects of the chemo, turning various shades of yellow (left hand) and grey (right hand). This has been accompanied by soreness at the tips of the fingers, which hasn’t seemed to spread down to the gripping function of the hands. So I can still open jars and bottles, and hoist weights at the gym, but have trouble pulling my credit cards out of my wallet. Dr P said this was one of the most common side effects of chemotherapy. The nails will grow out normally from the cuticle, and the old darkened nails would gradually drop off. I have been getting some swelling as well around the ankles, particularly on the left side. (With the help of Dr Google I diagnosed this as lymphedema, a common occurrence in people who have had lymph nodes removed.)  I have been dealing with this by elevating the ankles, particularly at night, and wrapping the left hand one in a bandage that I got when I twisted an ankle years ago. Both things seem to work quite well, and fortunately the ankles aren’t painful at all when swollen.

I had a claustrophobic reaction also to an exhibition that we went to see recently at NGV International about Escher and X nendo — the latter someone of whom you will have heard if you are a Gen Y or Z. Unfortunately I couldn’t see 95% of this exhibition, as it was pretty crowded, extremely dark, and laid out in such a way that you couldn’t see more than a few metres ahead of you. I had to bail out after a few minutes and go and have a look at the merch. (The tickets had been freebies from American Express, so I didn’t mind too much.) We saw another exhibition some time after this, about Baldessin and Whiteley, also at NGV (the Potter this time). This was a far more pleasurable exhibition to attend, with a much more light and airy layout which emphasised the contrasts and similarities between these artists. This exhibition finishes on 28 January BTW; an entry fee is payable for both. It is worth it, IMHO, to see Whiteley’s huge Lavender Bay pictures, and his epic American Dream sequence.

The last of the cheMohicans

I am becoming a bit blase about the chemo sessions, I fear. My dedicated followers will know the last one of the six occurred yesterday. I was just poking around in the kitchen a short time ago, looking at the calendar, which had it listed for Boxing Day. My trusty Raymond Weil automatic watch, obtained through the combined generosity of RMIT and my beloved about four years ago, told me it was the 28th today. Other sources contradicted this, telling me that today is the 27th: ergo, I had had the chemo yesterday. (The date window in the Raymond, for some reason, only adjusts forwards. Rather than advance a whole month, it is easier to not wear it for a day, and let the date run down to the correct one. September, April, June and November are all easy months, as all that is required is a single advance. February, of course, requires two, but I can just about cope with that.)

If I was having trouble remembering when I actually had the chemo, you can infer it went without incident. The worst thing was the coffee they sweetly made me in the oncology unit — they are so nice, I feel a bit mean to complain! (I just had another one at home.) The PSA continues to edge south, being now <0.01 — truly undetectable. I am not having any side effects yet, apart from a bit of fluid retention around the ankles. We got some lovely presents the day before, including a bottle of Mumm — my favourite! And my beloved gave me a super photo of our wedding day (the silver anniversary of which having ticked over a few days before).

Today it was hot — about 37 — so we went to see a morning session of Collette at the Balwyn Cinema. It was enjoyable, if rather resembling a BBC three-part costume drama stitched into a feature film. I would say “Get it on video”, but I am showing my age there! Still, anything with Keira Knightley is generally worth watching. Domenic West was good as Collette’s husband, the frightful (and appropriately-named) Willy. Lunch followed at a local Italian place, which was reliable as always. Then home to sit in the air conditioning and watch Day 2 of the Boxing Day test.  Hope everyone’s Christmas-New Year break is slipping similarly under the radar!

What’s been and what’s to come

Before the main part of the post, there is a small addition to the Resources page in the form of the NCI Dictionary of Cancer Terms .

We are now just a few weeks from Christmas. Those who know me will know this is my favourite time of year! (Not.) Still, it brings us to a sort-of review time for 2018.

The last twelve months has been one of numerous changes, and some milestones. I bought a new car, and we replaced some big-ticket things like the ducted cooling and the bed. The Blu-Ray recorder, and some electrical equipment, was also replaced. For the first time ever, my beloved moved to part-time employment. Most importantly, we are to celebrate our twenty-fifth wedding anniversary at the end of this year.

It has also been a huge twelve months or so health-wise. My treatment summary from November 2017 to now is the story of my cancer:

  • radical open prostatectomy
  • subsequent treatment with a physiologist specialising in continence
  • referred to a radiation oncologist, with whom I
    • had radiation therapy, with moderate success
  • then referred to a medical oncologist, with whom I
    • had androgen deprivation treatment and chemotherapy.

Of course the last of these is ongoing. However, being in remission is a great result for the treatments I have received under the care of Dr Parente and the staff of the oncology ward in Epworth Eastern. My GP has been terrific as well — someone I have been seeing for many years. Modern cancer treatment of course relies on adjunct modalities, and I feel my exercise physiologist (a recent referral) will become someone else I rely on.

My progress through these treatments has been one from specific to general, i.e. from treatments focusing on individual mets, to ones that are treating the whole body. This has been driven by the failure of the specific treatments to keep pace with the growth in the tumours.  I believe the progression in the treatments is also from ones with lower potential side effects to those with more potential side effects, but more efficacy. (Time, as ever, will tell.)

The chemotherapy  has been less of a big deal than I expected. I have dropped some social engagements in order to lessen the risk of opportunistic infection — something my immune system is less able to handle than usual. However, I haven’t wanted to become a recluse. So new year resolutions include doing a better job of keeping up with people, both individually and through groups like the local Cancer Survivors.

The chemotherapy is adjunct with androgen deprivation therapy. Their combination gives apparently an increase in efficacy of 10% in absolute terms, over either treatment singly. I started with the ADT some weeks before the beginning of the chemo, and I will continue with that as long as I remain in remission.

(On the subject of keeping up with people, we have been having a lovely time just recently having an old friend to stay for a couple of nights. She came down from Sydney for Die Meistersinger at the opera, which we all saw last night. Amazing! The second act was quite the most spectacular I have ever seen live. The orchestra played every bit as well as the Gewandhaus, whom we heard in the Leipzig Ring, and everyone acquitted themselves extremely well in the principal roles, especially Michael Kupfer-Radecky, the third singer to be engaged as Hans Sachs. And Warwick Fyfe as Beckmesser! Is there a better anywhere? Anyway, I hope that 2019 includes more Wagner as well as more socialising. Wagner’s beautiful libretto also gave me the latest candidate for my memoir title: How spring has to be.)

I need to do more to keep the remaining grey matter active next year, too. I think 2018 was the year of Karl Ove Knausgaard. (I have the final volume of his autobiographical novel sequence to finish off.) I feel that enrolling in a course would keep me at something better than if I were just doing it under my own steam. Some candidates include a couple of online masters programs in creative writing. Doing the internet course Modern Poetry over the last few weeks was great as well; it is very well-supported. Hearing the beautiful German in the Wagner last night, however, and even understanding bits of it, put this further up the batting order as something I could re-engage with.

I would also like to read through In Search of Lost Time again, with a group. Ever thought about it? Or even just wanted to see what the fuss is about? (For example, Maugham regarding it the greatest novel of the twentieth century.) I will do it via Skype, if required. So come on, all you wavering Proustians! Carpe the diem, grasp the literary nettle, and let’s get down to it. I can issue a portentous promise — your lives won’t be the same.

Remission man

I saw Dr Parente this morning, and had chemo #4. All went well. The good news from the consult:

  1. PSA is now 0.01 (down from 0.03); and
  2. I am now, according to Dr P, in remission.

I am still not quite sure if it has quite sunk in. Of course, to put it bluntly, “remission” doesn’t equate to “cure”. Still, I would rather have this result than others! Staying on the ADT should mean that the remission continues as long as possible.

Yesterday I saw an exercise physiologist. This was as a result of a leaflet given to me at the previous chemo session. There is a push to make exercise much more of a front line treatment for prostate and other cancers. (I wrote about this previously .) So I now have an exercise physio specialising in such matters. What is the difference between an exercise physio and a regular physio? In this context, the former has a qualification in working with particular patients; in my case, obviously, those with prostate cancer. They have the skills to devise and implement an exercise program that will both be tailored for my individual capabilities — any physio does this — and not aggravate the bone mets. The latter is the secret sauce!

What’s so good about exercise, anyway? Apart from all its usual benefits, you mean, like improving sleep (for most of us, anyway), lowering blood cholesterol, stress and risk of heart attack and stroke, and enhancing bone density, cognitive function and general well being? All with next to no side effects, at generally a modest cost. (How much does it cost to go for a walk?) Yes, OK, but what does it do for cancer patients? Well, the more active blood circulation increases the exposure of the tumours to the nasty stuff in the chemotherapy compounds. So they get more of what they don’t like. Why don’t more GPs prescribe exercise, then? Well, for one thing, not many exercise themselves. Some of the issues are canvassed in this recent MJA article [NB: pdf.] As ever, your mileage with your particular GP may vary.

Warning: eyeglazing detail to follow. One can get onto an exercise physiologist via a Chronic Disease Management Plan . This gives five subsidised consults with a physio (any type), chiropractor, nutritionist, or other allied healthcare professional. You can see more than one of these, but you still only get five consults per calendar year. Your GP decides whether such a thing would be appropriate for you, what practitioner/s you should consult, etc. (guided in practice by your input). It is a bit of a bureaucratic echo chamber, and a well-kept secret, but nevertheless a good idea for fairly crook people. Once you jump through all the hoops, the subsidy is much better than you would get for getting those services through your private health fund.

Mini-break

We just had a couple of days catching up with family in Ocean Grove and Barwon Heads. We stayed with one of the sisters in law, and caught up with all the other family members whom we hadn’t seen for a while. (Last Christmas I had not long had my operation, so we dipped out for that reason.) This was a very cruisy visit. The thought crossed both our minds to go down in the new TTM, a,k.a. Testosterone Machine. (The second “T” makes it scan better, don’t you think? Actually, what about Testosterone Transplant and Orgone Machine, a.k.a TTOM?)

We decided against this for several reasons. First, we are still waiting on the full size spare. (More on this later.) OK, there is an inflation kit, but I didn’t feel like getting to grips with that beside the Geelong Road on Cup Weekend. Second, I was very tired, and thought I might fall asleep at the wheel. My beloved can drive it, but is less familiar with it than I am. Third, although we have added it to our Linkt account, we have as yet no clip in which to attach the new e-tag. The tag itself is still sitting in the old clip behind the mirror of the Fairmont, whence I just have not had time to remove it. Fourth, in all the documents I had been given for the car, there was no phone number for the roadside assist service that comes with the extended warranty.

This was something I had to follow up. While going through the car manuals, receipts and so on, I had noticed that the roadside assist phone number was missing. I wanted to check on the full size spare as well, so called the dealer. The salesman from whom we had bought the car was away sick. I there fore explained it all to a fairly gormless sounding person, who coughed into the phone without saying “excuse me”. (He did say “Sorry about that” when I remonstrated with him.) He passed me over to a more senior salesman who had been present for the purchase of the car. Obviously no explanation had been given of the reason for my call, as I had to explain it all over again. Had we been given a little warranty booklet? We had been, but I had forgotten it in all the excitement, and no-one had mentioned it to me. This booklet contained the magic phone number.

We were going away on the Saturday. I was coincidentally picking up the Camry from a service the day before — not at the Toyota dealer, but nearby — so decided I would drop in to pick up this booklet while I was out. I saw the business manager, who searched on their database. No, I wasn’t on there. I began to wish I’d brought all the paperwork with me so he could get the details from there. He did eventually find the transaction. I got a copy of the booklet, into which he clipped a small printed notice with the roadside assist details. We agreed I would take the booklet home, he would raise a receipt which he would then scan and email me. I would print this receipt out at home; I would then stick it inside the booklet with the little piece of double-sided tape provided for that purpose. Clip the printed notice over the receipt, and I would be in business. All this he and I duly did. So now I have the phone number and the roadside assist dudes have verification that I am the authorised owner. (Note to self — remove previous car from RACV roadside assist.)

It is not all fiddly details and things falling through the cracks. Alert readers — I’m sure you’ve both had your coffee — will recall I purchased a two year warranty. There was an additional statutory warranty of three months. Rather than give us a combined warranty of two years and three months, the dealership gave us one for three years, at no extra cost. The reason? They can only provide warranty cover for two or three years, not 2.25 years. So rather than round us down to two years, they rounded us up to three.

The spare wheel? Thanks for asking. The senior salesman said “I’ll have to order that for you”. In other words, no-one had done anything about it. I just hope it will be available for Christmas, probably to be held down on the coast again, in about seven weeks. You’re welcome!