A day in the country

A couple of years ago, I finally subscribed to the Melbourne community radio station 3MBS-FM. Because I did this during their annual radiothon, my subscription was entered in their prize draw. Renewing my sub this year, I won 6th prize in the draw, which was a weekend hire of a car from Toorak Mercedes.

(If you think this is a plug for 3MBS, you might be right. As Bill McLaughlan, presenter of Exploring Music says, if you’ve been thinking about subscribing, don’t feel guilty – do something! You do get a lot for your $30. And from their monthly online guide, one can actually see what programs are being broadcast. (Luddites can get this guide in hard copy, for no extra charge.) Planning one’s listening is practically impossible with ABC Classic FM, despite all the time and, presumably, money lavished on the recent upgrade to their web site. Don’t live in Melbourne? Support your local community radio station.)

Getting back to the prize, a Benz is a nice piece of metal to punt around for a day and generally put on airs. This is particularly so, given that our cars are 14 and 22 years old. My beloved and I were originally going to have a weekend in Daylesford, or somewhere like that, in July. This was pretty close to the date of her work moving to Port Melbourne and all the stress associated with that process. (Former colleagues relocated to Bundoora can sympathise!) So we decided to defer the country excursion for a bit until she was more used to getting herself to Port Melbourne and back.

Cometh the hour, cometh the vehicle, in the shape of a GLC 350 SUV with only 7,000 kilometres on the clock. (We had expressed interest in borrowing a GLA or C class. This being near the end of the month, however, there weren’t many sedans in stock, so we got upsized into the GLC.) The logistics of picking it up were not straightforward. I had originally thought we would get to Toorak by public transport. Given that this involved getting to Riversdale station, a train from there to Burnley, then another to Heyington, and a hike up the hill to Toorak Village, we opted to drive there, then proceed by convoy home. So guess who got to drive it back to beautiful downtown Burwood?

A sales “executive” showed us the ropes beforehand. It has proximity unlocking. This means it detects when someone approaches it with the key. To open the door, just press a button in the door handle, then pull the handle back towards you. Inside, you can leave the key in your pocket, or put it in one of the cup holders. Seats, steering wheel, and external mirrors have power settings that can be saved individually. Gear selection is done by way of a lever mounted on the steering column, like a turn indicator. (Yes, that’s the one on the left hand side, like all Euro cars.) Want to open the tailgate? Wave one foot under the rear bumper bar; then step back. The tailgate majestically rises. Same procedure to close it.

The Benz is chockers with this kind of electronic gadgetry. Seatbelts tension themselves across your chest as you draw out from the kerb. If you are changing lanes, and someone is approaching on that side, it shows a red triangle in the mirror and beeps. Draw in to park it, and the passenger side external mirror angles down so you can see how close you are to the kerb. When driving up our driveway, lined with rather overgrown plants, beeping begins to sound. Squeezing it into our garage, past the less ancient car, the front camera automatically switches on.  This screen gives you red and yellow lines (with more beeping) as you approach obstacles like other cars and walls. Lights and wipers switch on automatically. You get the picture.

We just drove it up to the Dandenongs and back. On the road it gets along very well. There is plenty of mumbo on tap, albeit with a long travel accelerator pedal, but the turbo diesel is quiet. Even on the Comfort setting, the ride is not plush, something for which the run flat tyres are probably responsible. You feel the road surface, lane markers, driveways, and so on. However, the seats are great, controls are beautifully laid out, and it is generally easy to punt along. It isn’t actually bigger than either of our existing cars; the SUV packaging just makes it feel bigger, on account of its being higher. Could I get used to it? Certainly! You would probably walk away from most prangs. We don’t have 80 large to splash on a vehicle, though.

We had lunch in Maling Road, after which my beloved proceeded to have a mani and pedi. I made myself useful by buying some meat and vegetables for tomorrow (being Grand Final day public holiday), then having an iced coffee sitting on the pavement. Did I mention it was a sunny day? 24 degrees! On our way back to the Benz, my beloved saw a dress in a little shop. Trying it on was facilitated by my taking her top off for her in the change room (so as not to muck up the newly done nails), buttoning and unbuttoning the dress. The dress having gotten a guernsey, as it were, the process happened in reverse. Being a Thursday, it was not too busy anywhere. And we got home in time to miss the school pick-up imbroglio. Each of us had something on order for home delivery; both parcels arrived. The day would not have been improved if my beloved’s ticket had won the lottery.

Sunday miscellany

A cure for insomnia? That seems something we are as likely to see as as a perpetual motion machine. Nevertheless, this article from The Guardian has definite cred. (Apologies, as ever, for cross posting.) Merely by taking people’s insomnia seriously, Dr Selsick of the Insomnia Clinic in Bloomsbury is doing a great service. The method seems to work, too, in the experience of the article’s author. The good doctor is also refreshingly non-doctrinaire about sleeping tablets. No-one regards them as ideal, but, as he points out, sleep deprivation carries risk as well.  (I have tried the sleep medication mentioned in the article, Belsomra. It does something, just not quite enough.)

I am going OK with the aftermath of the chemotherapy. Thursday and Friday were pretty normal days. Yesterday and today I have noticed more symptoms, mostly a bit of discomfort in the legs and ankles. These symptoms are not new, but have become more noticeable over the last couple of days. So far a combo of paracetamol and a little Endone is making it tolerable. (Thanks, Jane, for putting me onto that.) I found a good booklet on cancer pain and medications online from the Cancer Council, updated, as it happens, this month. The booklet discusses various aspects of pain, medications, and pain management in a useful way. Of course what I am experiencing is not cancer pain, more a side effect of the chemo.

I didn’t write much before about the actual process of receiving the treatment. Being the first time, it took a bit longer, there being more to explain. The nurse was very thorough in doing this and walking me through the side effects that I may or may not experience. After putting in a cannula, they started with an anti-nausea drug, then put another drip in for the chemo (a drug called Docetaxel). Putting in the Docetaxel takes about 1.5 hours. I also got an implant just under the skin of the stomach; this lasts for three months. The implant is about the size of a grain of rice. I haven’t had any problems with wounds where the cannula or the implant went in.

On Wednesday night, my face felt a bit hot, and my cheeks were a a little red. I just put some face cream on from the sample bag of products donated by the hospital pharmacy. (Marketing, of course, but the products themselves all seem good.) There was quite a number of mouth care products: moisturising toothpaste, mouthwash, and gel. The nurse also suggested I could make a mouthwash from a salt or baking powder solution.

The chemo goes on a three week cycle.  I am to have six cycles, so five to go. (I should be finished in early January, 2019.) I will probably feel pretty ordinary in the middle week of the three as the red and white blood cells drop. As these recover in the following week, I should feel better. I have to have a blood test at the beginning of each chemo week. If all is well here, and I don’t have a temperature, I should be good to go. I still have about half the ADT tablets to take, but I should have finished those by the time the next chemo rolls around.

Energy matters

Of course Father’s Day is a commercialised rort and an excuse for selling more stuff. Nonetheless, siblings, and anyone without a dad handy, will probably be feeling a pang today. I still have one of Dad’s old shirts, and his dressing gown. More practically  I have been honouring our Dad in a practical way, by doing a spreadsheet about energy use.

(To bring non-family members up to speed, our Dad, David, was an engineer. Toward the end of his career, he developed a particular interest in energy conservation. Unfortunately, as in other things, he was ahead of his time. In the eighties, most people thought fossil fuel energy was cheap, and would last forever. Peak oil and global warming were unheard of out here.)

Dad therefore would have been totally across my spreadsheet, which bears the catchy title “Cooling & heating costs with split system versus separate evaporative cooling + gas ducted heating” (Aron, 2018, unpublished.) You may not find this magnum opus in a bookshop near you, if there still is one. So I can upload it to Google Drive, if anyone is interested. (No? Fair enough.)

I will prevail on your patience with a précis. We have to replace our 15 year old evaporative cooler with a newer system. This has opened a bit of a Pandora’s box. Should we replace it with another evaporative system? Or go reverse cycle ducted? This would use more power, but wouldn’t use any extra water. What are the comparative costs of these systems?

This begs another interesting question. How much water do evaporative systems use, anyway? The answers are complicated. Modern evaporative coolers recycle their water. They can’t do this indefinitely, however, as the salts in the water become concentrated. This shortens the life of the cooling pads. The point at which a cooler will dump its water varies between brands, the salinity of the water, etc., and is just about impossible to find out. Different manufacturers’ web sites mostly say: it depends.

I consulted Dr Google on this matter and found two figures for water consumption of evaporative coolers: 58.6  and 113 litres per hour. The first is contained in a paper written under the auspices of the Federal Government’s Water Efficiency Labelling and Standards Scheme. (The link points to the .pdf format.) The second is derived from post to the Whirlpool discussion list. I included both figures in my spreadsheet, as Scenarios 1 and 2. (As you do.)

How much energy do different types of coolers and heaters use? This is much easier to find out. Sustainability Victoria has useful summaries for cooling and heating .

Those still awake will be on the edge of their seats, I know, so here is the executive summary of what I found:

  1. Reverse cycle would be cheaper for us, by between $239-$891 dollars per year.
  2. Reverse cycle systems are more expensive to purchase than evaporative. What would the payback period be? I did two calculations; one guesstimated the extra cost of a ducted system at $4,000, the second at $8,000. Accounting for multiple variables, the payback period varies from 4 to 33 years!

Anyway, we have pretty much decided to go with another evaporative unit. This is for non-financial reasons. My beloved has sinus problems, and the extra humidity of the evaporative is better for her. We can also use our existing ceiling ducts. Refrigerant system ducts are smaller, so we would have to have some new holes cut in our ceilings, and the old ducts covered over.

This is what we were leaning toward in the first place, but we now know why this is the right answer – for us. I hope Dad would approve.

Bring it on!

Well, I had my appointment with Dr Phillip Parente this afternoon. (He is a medical oncologist, and adjunct clinical associate professor and acting director of cancer services, Eastern Health.) We were both impressed by Phillip. He is very concerned to explain treatment options and considerations clearly so that patients understand the issues. He even drew me a sort of ideas map, explaining that his handwriting is better than that of most doctors (it is). Phillip struck us also as energetic, positive, evidence-based, and fully seized of the need to get a move on. I said that I wanted the most aggressive treatment that he would advise, and this is exactly what he wants too.

He needs to find out whether my condition is low or high volume. The latter is three or four bone spots, or any visceral disease (for example, in the liver or another organ). If this is the case, he will recommend hormone treatment plus chemotherapy. Adjunct therapies like this have significantly extended efficacy over a single treatment. So I won’t need to come back so often to repeat or have it changed over to another drug. (As he put it, I have a lot of tricks in my bag.) It is difficult to say how long the effectiveness of a treatment will be, as individuals respond differently. He thinks that, with my (relative – my word) youth and fitness, I will be able to handle the side effects easily. Low volume disease – the former possibility – can be addressed by hormone treatment alone.

So what happens next? I need another blood test, which I had on the way home. I also need another PSMA PET scan, this one at Epworth Box Hill. Phillip’s practice initially made an appointment for me on Friday afternoon. The scan folk, however, have a cancellation for tomorrow afternoon, so I will be going in then. (I have had one of these scans before, and compared to an MRI, they are a walk in the park. I don’t have to fast – although I do need to be hydrated – I can drive myself there and back, and it the scan is done in a large, open space.) After the scan, I will be seeing Phillip on Monday, when he will discuss what is the most appropriate treatment, and (I hope) start it then.

Watch this space.

 

Here’s the thing

Apologies everyone. I published this yesterday, but as a page, not a post. So no-one saw it.

I saw Pat Bowden, the radiation oncologist, this morning. The news was, as has been previously, neither the best nor the worst. The takeout: I have to have androgen deprivation therapy (ADT).

In more detail:

  1. the last PSA test was 7.2, more than double the one previous to that, which was 3.4. So just over double in three months means it is obviously heading in the wrong direction.
  2. I will be referred to one of two medical oncologists for the ADT. (Pat thinks they are equally good and experienced with prostate cancer. So it will be whichever of them is available first.)
  3. ADT has been around for about forty years, so is a well established treatment.
  4. ADT works by depriving the cancer of androgen, which is what feeds it. It is basically chemical castration.
  5. ADT is known to have side effects, so I may experience one or more of these:
    1. hot sweats
    2. weight gain (most patients gain 2-3 kilos)
    3. aches and pains
    4. feeling weaker and less energetic
    5. decline in mood
  6. It is delivered in the specialist’s rooms by means of an implant. The implant lasts three months.
  7. ADT gives a median control time of four years until the next treatment. I asked what “control time” meant. It means the cancer being under control, i.e. not changing; see Managing cancer . So with four years being the median, this is the middle value in the range from shortest to longest control time. (Apologies if I have committed a statistical indignity here.)
  8. Should it become uncontrolled, other treatments will be embarked on. As well as the existing treatment options, I could possibly participate in a trial of one or another emerging treatments, should they be suitable.
  9. Cancers which are new to ADT are referred to as “castration naive” (or variations on that). They can then become “castration resistant”, “ADT refractory”, or other jargon that refers to the ADT becoming ineffective.
  10. I was under the impression that this progression (from naive to resistant) was inevitable. However, only a small percentage of castration naive cancers become castration resistant.
  11. New treatments are being developed all the time. As well as this, combinations of existing treatments are being tried very actively, to see if they work better together than singly. One that is potentially relevant for me is ADT in combination with a drug called abiraterone. (Pat, unsurprisingly, knew about this, and had had dinner with the author. See Osterwell, 2017 . You may be asked to register with the site. If so, I can send you a scan of the paper.) This combo has been found to give an absolute (not relative) increase in control of 8% over ADT by itself.
  12. Pat was pretty positive about ADT and my cancer, saying (words to this effect) “It’ll stop it”. In my experience, specialists are not usually so forthright. (You will note he did not use the “C” word. I will settle for stopping it, though!)
  13. I asked Pat what were the three things he would like me to take from the consult. His reply:
    1. We can control cancer for many years;
    2. ADT comes with side effects; and
    3. the treatment paradigm is very dynamic. So there will be new treatments available in a few years not currently available.

I will be going for the most aggressive option that the specialist recommends. Pat’s rooms are going to call both oncologists and see who is available first; I should hear from them in a few days. I still feel fine and intend to go on exercising, socialising, and all the other things I get up to. As my beloved correctly pointed out, it would be advantageous for me to lose a few kilos before starting the treatment, in case it does cause weigh gain. I will give it a go! Generally, I feel slightly daunted, but relieved, oddly, that I have a clear treatment path to follow.

This and that

With writing the instapoems and the memoir, I need something in which to take notes. So I have a variety of notebooks.

One of these, the little leather-bound Filofax, is small enough to go in a jacket or trouser pocket. When I started carrying it around regularly, I realised it contained a mixture of different notes, including those from medical consultations as well as my literary thoughts. So I finally got myself together to transfer the medical notes to a bigger Filofax. This holds many more pages than the little one, but is too big to haul around every day. (I would just leave it somewhere if I did.)

The small Filofax still has a range of stuff in it: memoir notes, instapoems, general thoughts and reflections, and possible thesis topics. I hit on the idea of sticking a different coloured tag on each of these categories. When I want to tidy things up, the Filofax format will allow me to put each of these things together. (Eventually, I will get some tabs and another notes insert; I will do this when in town on Monday.) At present, though, they are all mixed in. The colour coding saves me from looking through the whole notebook each time I want to find something.

Among my blessings is that I am not having any pain or other effects from the cancer. One thing I am experiencing, however, is what people call cancer brain. (There is a nice little paper about it here ; the author calls it “cancer brain fog”.) I am, at times, very scatty: starting things and forgetting them, then coming back in and being reminded of them. That kind of thing. The paper I linked to above gives some good strategies. All the usual suspects get a guernsey; exercise, mindfulness practice, creating visual reminders of tasks to be completed, a balanced diet, sleep. (I’ve been working on the last one for about twenty years!)

With the instapoems, I have been naming them after elements. Primo Levi’s wonderful book The periodic table attempts to characterise those elements he describes. In my case, however, there is no symbolism involved. It’s simply that the periodic table is a useful source of names. (I don’t think I will use boron, though, lest it describe the effect of that poem on the reader.)

The story of how the periodic table was developed is one worth reading. There is a very approachable book for scientific illiterates like me, The disappearing spoon: and other true tales of madness, love, and the history of the world from the periodic table of the elements, by Sam Kean. I found and, on the second go, printed out a one-page copy of the periodic table, so that I won’t double up on poem titles.

The poem which mentions Min Kym was inspired by her memoir Gone: a girl, a violin, a life unstrung . There is a synopsis here . Recommended. (All these links, except the last one, point to records in my local public library.)

The cost of everything and the value of nothing

I know I said I would talk about the Peter Mac-sponsored “community conversation” about PC last week, and I will, I will! But first, there is some good stuff coming out about surgeons’ fees. Among the questions asked: how much do operations cost? If you have to have an operation, is there any way in which you you can predict the cost? Are more expensive operations better?

First there was the recent Four Corners program (which I have recorded, but not seen; there is an article by Brigid Anderson and Norman Swan on the ABC web site covering some of the dicussion.) Then there was the Fairfax press article covering much of this ground, but with some case studies. (If these links don’t work, a search on “Your medical bills: Out-of-pocket costs, hidden fees and who’s to blame” and “Egregious Sydney surgeon bill” will bring up the articles.)

Basically, it is like getting your car repaired: if we’re talking about a vintage Ferrari, that is. The number of people who work on these things, and who know whereof they speak, is small. So there is not an abundance of competition.

The analogy falls down from this point, unfortunately. You can drive your vintage Ferrari (assuming it is ambulant) to another garage and get another quote. To do this with another medical specialist requires returning to your GP for another referral. (They will usually not know which specialists charge how much, so it is really taking pot luck.) However, even if you decide to do this, you obviously have to wait until the second specialist has an appointment. And if you have a condition like an aggressive cancer, panic can easily set in and you think “I have to get this fixed now!”.

So there is a number of ways in which the market economy analogy doesn’t apply. One is the relative lack of competition. Another is the absence of perfect information on the part of you, the consumer of the service. Specialists are unlikely to advertise their prices; as far as I know, there is no comparethemarket.com for medicos. It is difficult, also, to calculate the value of the service being offered. What value would you put on your life?

Once one has chosen a surgeon, who generally operates at a particular hospital, the costs don’t stop there. There are anaesthetist’s fees, pharmacy costs, and of course the costs associated with the hospital stay itself. I was fortunate in that our health fund covered the last of these. Everything else was pretty much an out of pocket expense. The main elements of the surgeon’s fee were clearly disclosed up front; even so, there were a few surprises.

So, putting all the costs I was up for together, I got out of it for well under half the figure quoted in the SMH article. Survivors’ groups are a good way to find out how much other guys were charged for what you had. This reinforces my view that my operation wasn’t that expensive. (Fancy things like robotic surgery are more expensive, and, from what I have read, and heard from people who have had it, don’t confer any additional benefit.)

I’m not against surgeons being well remunerated. They do a job that, if they get it right – and they are more likely to than someone without their training and expertise – will save your life. I think a lot of surgeons do pro bono work as well, something they don’t advertise. It takes them a long time to learn to do what they do. A surgical career can be fairly short while they are at the top of their game. Most work formidable hours under great pressure.

However, it’s obvious that they don’t have any incentives to charge less than what they think the market will bear. (The only sanction seems to be getting a rap over the knuckles from the appropriate college.)  How can this be addressed? What about giving them a meaningful incentive to advertise their fees on their practice web site? What this would look like, of course, I have no idea. But it is good that this is all being talked about.