Author: feurmann

Fighting the good fight

by feurmann

I’ll write this post in point form.

  • We saw Dr on Wednesday, 19 February. During this consult there was some discussion of how the cancer has now colonised the bone marrow as well as the bony skeleton itself.
  • He mentioned also (apologizing for being blunt) that my disease was now at its terminal stage. (Having gone to stage 4 fairly much straightaway, I had done well to maintain good health for eight or nine years.)
  • Although we knew that I was already in extra time, hearing this came as a shock to both of us. However, there’s no alternative to pushing on down the treatment path remaining to me.
  • I had mentioned in my previous post about a treatment involving lutetium-177. This would be administered at the Peter Mac hospital, at their Parkville site. (I know this well because I had my treatment for the Merkel carcinoma there.)
  • In the lead- up to the consult before last, I had had two scans at Eastern Health in Box Hill, a PSMA PET/CT and an FDG PET/CT. These were meant to assess my suitability for the lutetium therapy. I had expected that Dr P would be able to give me the OK (or otherwise) for this at our last consult.
  • The final say, however, apparently rests with Peter Mac. Dr P has found them a bit dilatory in the past, but they have contacted me several times, the last to make a telehealth appointment on Tuesday 25th of February. I think (and hope) that the answer on this occasion is “yes” — I have already had to pass a few hurdles to get this far — but we shall see. Of course I will keep everyone updated as to what the final final answer is.

Intelligence so far

by feurmann

For about six weeks I have been experiencing feelings of faintness and dizziness when I stood up. My exercise physiologist measured my BP when I stood up, and found quite a drop compared to the measurement of the sitting condition. She altered my exercise program, which I am now having one-on-one rather than in a class.

Following this, I have had a few new things happening:

  • a transfusion of a couple of units of blood, and
  • having scans to assess whether I should move to lutetium-177 treatment.

For some years I have had moderate iron anaemia. Tracking down the causes of this condition had been thoroughly undertaken by my previous gastroenterologist, by way of a colonoscopy, gastroscopy, and use of a pill camera. Rather than repeating these rather invasive tests, my current gastro, Dr B, had chosen to do various blood tests, and contrast their results over a few months. My haemoglobin had been 89 in January 1924; it was now 83. Red blood cells were deficient (I don’t have scores for this). He decided I was moderately anaemic.

Dr B thus arranged for me to have a bed in the hospital and have a transfusion of two units of blood. This was done; my beloved ferried me in some PJs, a clean shirt, and a change of socks and undies from home. She also obtained my evening and morning meds and my e-book reader, an ideal piece of kit for these circumstances. This enabled me to just settle in and wait for the blood to be obtained, a process that took several hours.

The transfusion was a slow process too, only finishing about 11.00 that night. I felt better afterwards, and had more colour. Fortunately, also, the faintness and dizziness on standing up has virtually disappeared.

Dr P wants me to cease the chemotherapy, moving instead to a newer treatment involving lutetium. (This treatment is well explained here, so I won’t attempt to paraphrase it.) First, however, I have to have two scans to assess my eligibility for the treatment. I have had one of these scans; the other will take place tomorrow. I will then be seeing Dr P this coming Wednesday, who will explain the scan results, including the all-important yes or no to my being able to commence the treatment. I’ll post or email following this consult.

 

80 is the new 70

by feurmann

I’d written that I wouldn’t be posting after each consultation with Dr P unless there was something new to add. The consult we had on Wednesday satisfied that requirement, more in the comments that he made than in the numbers. The PSA, kidney and liver functions were all as per previous scores (the latter two being in a normal range). The alkaline phosphatase (ALP) score is now within a normal range. (This measures bone destruction vs renewal.) The full body CT and head-and-chest scans I had had a few days ago showed a normal pattern with reference to February, i.e. no change.

Dr P said I seemed to be very stable, and he was very happy with how I was going. Then he added that his record for a patient was 80, and would I like to go for that? I replied I would take each year as it came. However, the question was reassuring: a few more years of being around might well be inferred. (Dr P was obviously not promising anything, but I don’t believe he would have asked the question if he hadn’t thought it applicable.)

So — with whatever we are all struggling, and dealing as best we can, with the best support we can hope for — may everyone finish 2024 on a note like that! Try to overdo things on the day, and thank the Lord for dishwashers.

Fill in the blanks

by feurmann

From now on I’ll just be posting if and when there’s significant change to any of the parameters in my medical report from Dr P. The one just gone contained the usual suspects: an increase in my PSA, a report from my last scans showing no additional activity (just the usual chuntering on), and him telling me how well I looked. From here on, if there is no post, assume that, if it’s not exactly good news, it’ll be the best there can be.

Those who know me, know I have a birthday very late in the year. I am pretty pleased to see this particular one coming around. I need nothing for what I’m planning for that day, which will be as minimal as can be. Planning is not exactly one of my strengths, but I have so far poked my head above the parapet to have looked as far ahead as Christmas. Regardless what this particular day means to you, may you all have a good one.

Violence toward women

by feurmann

This repost contains only minor changes — no need to re-read

This post is written from frustration and anger toward the prevalence of casual, verbal violence toward women, in the everyday speech of men. It’s based also on my belief that men talking about violence toward women normalizes such things. In the light of figures showing that more than one woman a fortnight has died in intimate partner (or “domestic”) violence, I am shocked that men can go on using this as a metaphor and not make the connection with its being carried out.

I found it shocking as well that this was happening in my exercise group. (I’ve changed the names.) This group is made up of prostate cancer patients. Each of us has a program comprising cardio and resistance exercises and balance training. Among the cardio exercises available is boxing; one patient can box with the exercise physiologist for about five minutes. (The EPs are mostly female, as was the case this time.) When requesting some boxing, Stanley said (of Mike), “Mike said he’s ready to beat the shit out of you”. The EP gently reproached Stanley for his language, in the context of domestic violence/intimate partner violence . (The boxing was carried out without incident.)

After class, most of us (including Mike and Stanley) went to lunch. Waiting for our toasties, Mike referred to a couple of female film characters, one being Nurse Ratched from One Flew Over the Cuckoo’s Nest, and another whose name I didn’t catch. Mike was riffing a bit on what he regards as these characters’ ability to avoid answering questions being put to them, thus negating the questioner while remaining icily pleasant. He remarked “You feel like beating the crap out of them”. At a break in the conversation I asked him whether he felt that women who behaved like Nurse Ratched deserved physical violence. He said (words to this effect) “No, you just feel like doing it”.

I was pretty surprised, to put it mildly, that he could express himself in this way after the pre-boxing incident. Both he and Stanley are married and fathers of daughters; the latter particularly dotes on his grand-daughter. Neither of these men, in other words, is likely to carry out violence against their spouses. But (and it’s a big but) I believe that the prevalence of expressions like Mike’s and Stanley’s contribute to a culture in which violence against women by men is seen as acceptable; something all men secretly feel like resorting to at times: unacceptable, for sure, but understandable.

Of course this is a belief on my part, not something I can prove. But we have seen recently a lot of analysis of Donald Trump’s inflammatory rhetoric, and concerns that this is providing justification to his supporters to act violently, should he not be re-elected. (An interesting Washington Post article explores these concerns on the part of Democrats and Republicans.) If Trump is adding to the threat of civic violence by his statements, why shouldn’t this work in the personal sphere? Are men who say things like “You feel like beating the crap out of them” (referring to women) blurring the line between fantasy and reality?

I believe there’s enough of a risk of this happening for men to refrain from expressing themselves in this way. I believe further it’s important to challenge and call out men who talk about acting violently toward women, regardless of whether they are our relatives, friends, or exercise buddies.

Nothing much of note

by feurmann

We saw Dr P on Wednesday, as normal before my chemo infusion later that day. The results from the most recent blood test were in line with those from the last few. Liver, kidney functions and blood glucose were all OK, and (or “but”) the PSA continued to rise. The quantum of this increase isn’t important; what matters is the doubling rate — the time period after which the current result would be double the previous one. If my PSA were doubling after four to six weeks, that would be cause for alarm. At the present rate, however, it would take about six months. The doubling rate, therefore, in Dr P’s words, “hasn’t really moved”. So — situation normal. (I’ll leave you to supply the rest of the acronym.)

The infusion was also unexceptionable. As usual I took along an e-book reader, my mobile phone, and a pair of noise cancelling headphones to help pass the time. A few days afterwards, the side effects are also as per — mostly classifiable under “chemo brain”. This syndrome mostly manifests itself as fatigue, some sleep disturbances, poor short term memory, and general woolly-headedness. (I seem to be a bit more tottery on my legs as well — not badly enough to use a stick — just to walk with extra caution.) The infusions’ being three weeks apart (give or take) seems just enough time for me to get over these side effects, and start feeling quite normal. The next lot of CB then ambushes me afresh: deja vu all over again! Fortunately my beloved reminds me that this is not my first rodeo, and I’m not losing my marbles just yet.

I had some treatment for the ankle sprain from a physio, who strapped it up and gave me some exercises. Further to this, my beloved and I went to to a local gym earlier today, where I had a gentle excursion on an elliptical machine and (briefly) a recumbent bike. This exertion seems to have not caused any pain or discomfort.

Taking a tumble

by feurmann

I had a small accident on Saturday that has not immobilised me, but has certainly slowed me down a bit.

We had been out for an hour or so to get fruit and vegetables and have a cup of tea down the street. Wen we got home I discovered that I had forgotten to bring my keys, and thus couldn’t take any of the groceries inside. Adding further distraction, my beloved was still in the car taking a call from a friend, who had rung just at a minute earlier. I came down the steps to take my beloved’s keys and let myself in, but, being distracted, missed a step on the way down and tripped on it. I landed on the ground on all fours; fortunately I was nearly at the bottom of the steps, so didn’t fall any great distance. Even so, I ended up with a badly sprained left ankle and a graze to my right knee. (The way I landed at least meant I didn’t injure my hands or wrists at all.)

After we had put the groceries inside, I surveyed the damage. The area under my ankle bone (the lateral malleolus) had swelled up like half a tennis ball, and there was swelling to the foot and ankle generally. Fortunately I had a Velcro elastic bandage which wraps around the ankle joint and under the heel. I put this on (with an ice pack) to give the joint some support and allow the swelling to go down. The pain was not bad as long as I didn’t put weight on the leg.

That afternoon we watched a couple of movies on Netflix and just generally chilled out. I was able to hobble around to some degree, aided by a bamboo walking stick that Jill remembered we had. A couple of things fell into the “fortuitous and fortunate” category. The first: having just done a grocery shop, we had no immediate need to go out. The second is that my next appointment with Dr P, followed by the chemo infusion, isn’t until 16 October; by this time I’ll be more mobile.

It’s now Tuesday, and I’m looking forward to getting out of the house! (I have ventured as far as the bottom of the steps.) Before this I will need to have a sponge bath — I haven’t ventured on a shower yet. (To the suggestion of a shower, I replied “What would I hold onto?”.) Yes, accidents like this have highlit the need for us to install some fall-reducing stuff in our place. A grab handle in each of the showers and a hand rail for the front steps are at the top of the list. (The latter could have saved me the tumble.) Meanwhile I am hobbling around quite well.

Mundane Monday

by feurmann

Our consult on Monday morning last with Dr P yielded, at last, some good news:

  • The PSA is down to 542 (formerly 625); and
  • the bone spots are reducing in activity, and thus in size.

There was some discussion about the latter of these. Dr P commented that visceral spots are easy to imagine; they can be compared to a pea, a marble, or an egg, or whatever object fits the size of the spot best. Spots in bone are a bit harder to conceptualise because they don’t differ so much from the surrounding tissue. Therefore they are described in terms of avidity, or as “hot spots” which can vary, over time, in temperature. I am not certain, after this discussion, whether this temperature scale is metaphorical or actual. Whichever it is, my hot spots are cooling down a bit, so frankly, I’m not fussed! My reading is (and Dr P confirmed this): the spots can go up and down in terms of activity. At the last scan, they tended to the latter. This can lead to me feeling somewhat better or worse.

Dr P commented that, at our first consult, he would not have imagined me still being here six years later — let alone looking and feeling so well. He has never said anything unconsidered, and this might have seemed a touch blunt. But as ever he was actually being considerate in not allowing any unrealistic hope to creep in. I have been in stage 4 from the outset, and no-one ever thought or suggested it was going to go away. Fortuitously I had a session booked the following day with my psychologist, Goldie (not her real name). She suggested I see, and enjoy, this period as “extra time”. I’m certainly feeling very well, and, just as importantly, that I’m coping well with the treatment. To cap off a busy three days, I had a chemo infusion the day after, which wasn’t problematic in any way.

The takeout is: the treatment is pushing back (my words) on the cancer, and therefore the pain I had been experiencing. Dr P said he thought successful treatment rested equally on the doctor, the patient, and the patient’s home support. Can’t add much to that, really!

Being a good greenie

by feurmann

OK, so we all want to do the right thing with the packaging and so forth that we bring home. But confusion reigns. The War on Waste programs a few years ago (the third season of which was shown on ABC TV in Australia recently) highlighted the lack of clarity at the household level around recycling practices. Are plastics that spring back when you scrunch them up treated differently from those that don’t? What about “recyclable” coffee cups?

Fear not. A recent guide was published in a free online magazine that takes you from the soup to the nuts of household recycling. I printed this out to put on the fridge. Then the thought occurred to me: other people might want to do that too, without the fiddling around that is involved with printing a web page. So, to be a good greenie, I have pasted the text from the original document into a Google Doc, taken out excess line breaks, and added a bit of content. (The guide is in two parts. I haven’t interfiled the new content with the old, so you will just have to live with that.) The new document is unimaginatively called Recycling, and is available here until I get a take-down order.

I’m aware there is a controversy about whether plastics recycling, in particular, is responsible for much of the microplastic pollution currently occurring. I don’t know enough about this to comment. The collapse of the Redcycle plastics recycling scheme has left us, like everyone else, having to put our plastics in the general waste bin, thus eventually into landfill. It is all rather depressing.

We returned a few days ago from two nights in Hepburn Springs. The place we stayed was new to us, and much less expensive than our usual villa in Daylesford. The only negative for the property was that it was on the side of a hill, and thus down about five steps. However, it was very neat, well appointed, and snug inside. We had the facilities for cooking breakfast; this is a must on account of my beloved’s food intolerances. Going midweek was definitely less stressful than on the weekends, when half of Melbourne seems to flock there. Of course we chose to go a few days before the winter solstice, and thus the true depths of winter — down to about two degrees overnight. Melbourne was discernibly warmer!

Improvement by degrees

by feurmann

My bad, I forgot to post my last consultation with Dr P. In my defence, the difference between the previous set of results and those obtained last time was small. I was also feeling fine (which continues). Thus there wasn’t much to be either excited or depressed about. That could be said about the appointment we had with Dr P on Wednesday 13th June. The headline: the PSA is actually heading south, down to 475 from 491. The degree of decline is obviously modest, but anything in that direction is welcome. Following this consult, I had my chemo infusion, which went well as usual.

The main novelty of the last few weeks was my belated entry into the world of music downloads. I was initially lured by a $2 download, from a site called Classic Select World, of the complete Beethoven symphonies. This cycle dates from the 1980s, and is played by the London Symphony Orchestra conducted by Wyn Morris. I had only come across this conductor’s work in a little-known but exquisite piece by Mahler called “Blumine”. This had originally been intended by Mahler to be included in his Symphony no. 1, “Titan”. (NOT “The Titan”, as ABC Classic insists on announcing it.) Anyway, the composer decided to drop the piece from the final edition of the symphony, leaving it known mostly by Mahler tragics.

Wyn Morris’ Beethoven cycle is a total bargain at this nominal price, as long as you can divorce yourself from the CD format. OK, these are only MP3 files, but for $2, but to me, they sound pretty darn good! Downloading and unzipping the files was easy, but how to get them playing on the stereo was less obvious. Anyway, I figured out a way to copy them from the download folder in my Chromebook onto a thumb drive. (Most amplifiers have a USB drive suitable for this purpose.) Classic Select World has some other bargain boxes at this derisory price, a few of which I have also purchased and been playing back. If anyone wishes to test the waters for nix, they has a free weekly download — just have a click around their site. (Given the sums involved, it will come as no surprise to hear that Classic Select World has not paid me for this endorsement.)