I had a pretty good day today, getting a few things done, but not trying to do too much.

At about 10.00 we went to Chadstone for a coffee and to buy a towel for my beloved’s niece to use. (It seems a bit clinical to say “A house guest”; we are really looking forward to having her.) Then out of there, hooray! It was starting to get really busy when we left an hour later. I said to Der Fisch that that was going to be the extent of my participation in The Festering Season. (Have Grumpy Old Men been in touch yet, dear?)

I walked home from Burwood Village, where der Fisch dropped me en route to driving to the supermarket for a serious grocery shop. I must have found this pretty tiring as I dropped off to sleep in front of the cricket. She returned, laden with comestibles, which I received the delegation to put away. Then in the afternoon we had a visit from my beloved’s sister and partner. They helped us assemble the outdoor table that we had had powder coated. A good load of … ah … miscellaneous stuff was also loaded into their 4WD. I just supervised, being still forbidden to lift anything. (Everyone was very nice and refrained from telling me to rack off.)  Now we have our garage back!

I had some little sticky felt tips to put on the table feet. These turned out to be quite recessed – I’m not going to try to explain this verbally – and thus two layers of the things were required. Anyway, I need to get some more to put on the chair feet. (This should not be a great problem as they are just from Coles.) So since I came home we have had the courtyard finished, the table and chairs powder coated and assembled, gotten the umbrella and base, and put everything together.  Now all we need to do is some weeding (things are getting a bit exuberant after all the sun and rain), put the chair feet on, and sit out there!

The appetite is still pretty patchy (other than for cakes, as previously ‘fessed up). The squeamish can skip the rest of this paragraph. I also had a mild concern as I was passing a bit of blood in the urine, not large amounts (more of a tinge), but consistently. This was only visible at the start of the flow. I actually rang up the paging service about this and spoke to the duty urologist, who said it was nothing to worry about, and to drink some extra fluids. The last time I had a pee I passed a blood clot about 1.5 cm in length. (I know this as I fished it out and took a photo of it to show my urologist on Tuesday.) The blood in the urine stopped immediately, so I think it was just this clot getting stuck, then passing through.

Tomorrow I must get a new photo for my driver’s licence and write out some questions for the urologist.

Apologies if a degree of inelegancy is creeping into these blog titles. Apologies too for a bit of editus interruptus! I am trying to get at whether there are advantages to being sick. Maybe not outright advantages, but at least things that are not disadvantages.

Self-indulgence is one. There is a certain what-the-heck mood in which I can think “Dammit, I’m going to have a cake with my coffee”. This allows you to ignore the standard “No” response that, if you say it often enough, whittles the waistline down bit by tiny bit. This response is easier to circumvent, too, if you have just gained an instant 3-4 centimetres around the middle from having your lymph nodes removed. The perverted logic goes like this: the increased  waist measurement isn’t from overeating. Also, what I’ve got is pretty serious. So, let’s party! I do know I have to get back on the sensible diet wagon soon. Like Augustine, however, not just yet.

Not being expected to do stuff is another. Indeed, I am under strict instructions not to lift anything, help my beloved bring in the bins, or otherwise exert myself. It is surprisingly easy to get used to being waited on! It is a bit of a bore, though, in some ways. We now have an umbrella stand, umbrella, and newly powder-coated table and chairs, all to go in our lovely new courtyard. Normally I would be putting the brolly on the base, wheeling it up the steps on the trolley, bringing out the table, putting out the chairs and cushions. I can’t do any of that, and don’t want to put it onto Der Fisch, who has been busy enough doing the aforementioned waiting! So the inaction is a bit frustrating. I hope that Jeremy gives me the all clear to resume doing things, like exercise, when we see him on Tuesday. (Breaking news! We have just negotiated a compromise; I will cook the dinner, my beloved will do the courtyard.)

Of course the big advantage is the clarity that serious illness brings. The things that matter are the only things that matter. As one who had a tendency to waftiness and going through life on auto-pilot, this is a statement I am trying to live by. Not many people would regard a serious illness as conferring an advantage, but thinking about it, it has and it does.

It is hot in Melbourne at present; fourth day in a row above 30 degrees. I am not long home from town after a mostly successful trip. (This was my first trip to town post the operation.) It started not so well when I missed the train that I was planning to catch. All my fault – I just didn’t allow enough time to get to the station through the traffic. (Being retired, one tends to forget how much traffic there is in the morning and evening peaks.) Anyway, I got the next train, which meant I had time for a coffee, so not all bad. I rang ahead and got a message to the guy I was to meet. Strangely, I was dead on time, proving you can get from Camberwell to the city in half an hour. (I suppose I have Mum’s punctuality mania to thank for always allowing some slack in my travel arrangements.)

I did take a couple of spare pads with me into town, and used them both. I am burning through these a bit at present, particularly the small inner ones. (I put one of these inside a big pad for extra security, giving a kind of codpiece effect; very alluring!) Anyway, I was happy to find a few hints for getting hold of these products more cheaply:

• Thanks to my brother for pointing out that they are available in the supermarket (Woolworths, in my case; apparently Aldi also). Look in the feminine hygiene department.
•  Tena will send out free samples of their products. Go to the Tena web page and select Find Your Product. Tena also apparently has an online store with free delivery, and apparently good prices. If these products suit, and I find they do, this may be a convenient way to get hold of them. 
• Babylove Newborn Nappies cut in half apparently work well in lieu (sorry about that).
• Finally, for those who qualify, there is a federal government plan to subsidise these products. It is called the Continence Aids Payments Scheme.

I read the last three of these tips in the Prostate Cancer Foundation of Australia online community . (NB the PCFA community requires free registration. I link to the parent site in the sidebar of this blog; see External Links.)

The appointment I had this morning went quite well. There is a bit more to disentangle before I talk about it here, so stay tuned. (Yay, here comes some rain.)

I have just gotten back from a meeting of the Box Hill Prostate Cancer Support Group. There were about thirty blokes sitting around the table (kudos to Box Hill RSL for hosting the meeting – free parking, too!). The main group meeting began with a checking in sort of exercise in which everyone said how they were travelling. Introducing myself to a group used to really put the wind up me, but it went fine today, it being a laid back and supportive bunch. There was then some discussion about treatment-related stuff (trials in which various group members are participating), a run down of web and other resources, and a mention of a former group member who has gone into care. Approval was sought and received to make a donation to Peter Mac, where the meeting then adjourned to hear presentations and hand over the cheque. A quick toilet stop beforehand was enthusiastically patronised!

The presentations comprised an explanation of radiotherapy, an overview of new developments in prostate cancer treatment (some of which are still in the trial phase), and a talk about erectile dysfunction. The last of these was from a live-wire lady with a charming Glasgow accent from Peter Mac in Parkville. She was invited to give a talk to our group, which she accepted readily.  Everything was most interesting, and all the presenters got plenty of questions (for me, a sign of a successful gig). I took six pages of notes. The opportunity to get across some current treatment stuff was extremely timely for me as we are seeing Jeremy on 28th, when “so what happens next?” will be addressed.

Everyone I chatted to was very friendly, and I was invited to lunch afterwards. I had to decline this time, having stuff to do, and hours of information to absorb. I will definitely go to the next meeting, though, which will be the Christmas one, and look forward to hearing some war stories over a meal. As I said to the group leader, the only reason I wouldn’t be there is if I was having treatment. The very fact that everyone has been through the cancer mill (albeit some along different treatment pathways to mine) meant that there was an effortless and immediate understanding. The meeting made me realise that, in spite of everyone’s best efforts, love and concern, cancer can be very isolating. A group like this can break through that, probably like nothing else.

This extremely unoriginal title just popped up, and I am a bit of a believer in going with these things. It is a beautiful day, actually; maximum 30, but only about 26-27 outside, and very dry, so it feels mild. I went outside and did some watering earlier, including some hand watering for the hoya bush and a rather sick looking azalea in a tub that I have been nursing along for months. I gave this some compost and this has made it look healthier; it now has little green shoots along the branches. It needs a feed, which it is about to receive when I get to it.

Otherwise I have been making phone calls and appointments and ripping some discs to my MP3 player; all very uneventful. I have to be out this afternoon, and because it is going to be hot, I hit on the idea of going to see a movie. The only one with a suitable time is Loving Vincent, so I am going to see that. It should be nice to look at at worst. Had a fairly average night, but I am quite used to it by now. There is a meeting of the Prostate Cancer Support Group tomorrow morning in Box Hill, at which I should get some information about new treatments, particularly those involving radiation. (Jeremy said this was one of the options for me; this will be decided post the next PSA test, to be performed mid-December.)

An odd circumstance occurred this morning. I had to put the tablet on the charger, and my phone was getting a bit low as well. So I thought I would use the laptop to do the MP3s, checking a web site, etc. It turned out that I hadn’t switched this on the last time I had plugged it back in, so it was nearly empty. What might this be called: digital drought? Cyber-withdrawal? Anyway, it made me realise how much I have been relying on these various devices to communicate. It wasn’t always so, of course; once people read books, wrote letters, and so on. So I read a bit more of Godel, Escher, Bach for a while, before I ended up using the laptop plugged in. Just reading or listening to music definitely requires more concentration and the need to overcome FOMO.

Have been feeling quite sad now and again, but this is to be expected. We have had some difficult news to assimilate. This last fortnight, however, with my beloved at home with me, has been wonderful, mostly very serene. We are closer now, I believe. These words from A strange place, courtesy of the wonderful YANA site, definitely apply. The author, Terry Herbert, is describing the experience of men who have worked through prostate cancer to the remission stage.

They appreciate life and their loved ones more. They enjoy each day because they have had an intimation of mortality. It seems ironic that we have to be diagnosed with a life-threatening disease before we truly appreciate how wonderful our lives are.

I felt better today than I have for a few days. I think the secret is not trying to do too much and having enough rest. Like the last bowl of porridge, just right.

TMI alert in the following. We went on an extremely exciting and successful mission to buy another set of towels. (The reason? When I dry myself after a shower, there’s more dripping onto the bathmat than water! I’m still socking down plenty of fluids, so it’s more water than anything else, but still.) I had a coffee and a little tart while Der Fisch looked at clothes and shoes. Then I went to the bathroom and swapped over to the spare pad that I had brought (memo DJs: you need a waste-paper basket in your men’s loos). Joined herself in the ladies’ shoes, a quick look at slippers for my beloved’s dainty foot, then home. Just a perfect length outing.

I am nearly 50 pages into Godel, Escher, Bach, something I have been nibbling away at mostly in the small hours (note I delicately avoid saying “wee small hours”). Anyway, I will be able to post some initial thoughts about it soon. Meanwhile, there was an interesting aside, which I will reproduce below:

” … it is possible to program a machine to do a routine task in such a way that the machine will never notice even the most obvious facts about what it is doing: but it is inherent in human consciousness to notice some facts about the things one is doing. [ … ] If you punch ‘1’ into an adding machine, then add 1 to it, and then add 1 again, and again, and continue doing so for hours and hours, the machine will never learn to anticipate you, and do it itself, although any person would pick up the repetitive behaviour very quickly. Or, to take a silly example, a car will never pick up the idea, no matter how much or how well it is driven, that it is supposed to avoid other cars and obstacles on the road; and it will never learn the most frequently traveled routes of its owner.” (p. 36-37)

I know this is from a book published nearly thirty years ago. However, I guess this indicates how even a phenomenally smart guy like Douglas Hofstadter can be overtaken by technology. Anyone with an Android phone has gotten used to the slightly creepy things it asks you, unbidden, like “Are you interested in the travel time between home and RMIT City Campus?”. And it seems very likely that autonomous vehicles will be on our roads within five years. Of course this quote is getting into the vexed question of machine learning (something for which there does not seem to be an entry in the index). Is he for, against, or an agnostic? Stay tuned.

You can see I am scratching a bit for a title for this post. You should see the ones I rejected; ‘Freudday’, ‘Reverting to the mean’ – please! I guess real writers go through this “OK, how am I going to prime this pump?” kind of stage, maybe several times a day. Hey, whole books have been written about writer’s block, like the Bech novels by John Updike. (I’m sure the literate readership of this blog, and that’s both of you, can supply other examples.) Of course, he said oleaginously, literary scholarship is the most learned of all. Why do I say this? Try doing a Google search for “writer’s block books”, as I just did. What do you get? A whole bunch of stuff about how to fix it! To know what novels are about what topic, unless you get lucky and stumble across a thesis like “By hook or by crook: sheep farming in Victorian fiction”, you just have to have read the books. Look it up in the catalogue, you say? Catalogue records for fiction seldom have subject headings. How did I get to Bech? That’s my secret and I’m not telling.

OK, now I have whetted your collective appetite, time for the day’s major achievement. Are we sitting comfortably? Eagle-eyed readers of the preceding paragraph (you know who you are) will notice that I have located the double quotation mark on this keyboard. This was a triumph of deductive reasoning, if I say so myself. Pressing the key where the double quote mark should be (plus the shift key, of course) gives you the @ symbol. BUT, if you press the key marked with the @ symbol, what do you get? Go to the top of the class if you said ” (or should that be, ” ” “?). Take that, weird bit of keyboard mapping!

So, as will be abundantly clear, I have nothing really to report today. I walked my beloved down to the gym today; this is the longest walk I have had since the op. I felt fine when I got home, but had a sleep for about half an hour. Obviously that is about my limit at present. She is currently cooking dinner, before we have which, we will have a drink. I might have to ease back on the spirits and coffee, both of which are apparently deprecated for prostate health. (Something else to ask Jeremy about, but I will knock them off just in case.) Red wine is supposed to be OK, though, so I will have to double up on that!

I will leave you with an image and caption from Troop-C, the funny part of YANA. The image:

The caption, which I will paraphrase to avoid litigation, observes that when the light is on in the US, the switch is up. However, this convention is reversed elsewhere (like Australia, now I think of it). The down-for-on switch direction may not yield quite what the good Pfizer folk are looking for. Phew, I avoided saying that I was going to enlarge on this topic in future posts!

I alluded to needing to touch base with family members before posting some new information to the blog. I have now done this, and so am free to post this information.

On Tuesday night I heard from my urologist. He had the results of the biopsy from the operation. The results were somewhat alarming. Cancer was found not only in the prostate and one of the lymph nodes, as expected, but in others of them as well. I have a Gleason score of 9, this being about the highest. Gleason, as I understand it, is a composite score denoting how aggressive a cancer is; the higher, the more aggessive. So more treatment is required. When I have another PSA test, the best treatment modality can be determined. The test will be done about mid-December. (Christmas in hospital, anyone?)

I felt quite odd listening to this; detached at first, then, as it sank in, just scared. I had neither anything with which to take notes during the call, nor the presence of mind to request a minute to go and fetch something. So after the call ended, I was thinking ‘Did he really say that?’. That is one take-out for me: next time, I will take notes (as I have during consultations). This is all the more important as Jeremy’s news was pretty sobering, and thus stressful to hear. (My sister’s suggestion, when talking it over with her the next day, was to call Jeremy back and check that I had understood him correctly. This was excellent advice, which I followed, and I had largely understood him correctly.)

When my beloved got home, I told her; we both felt pretty freaked out, and had a drink (second one for me). Talking it over helped eventually to digest the import of the conversation, and work out what it meant for us. One thing that helped was reading someone’s story on YANA. (I read this about 2.00 am when I couldn’t sleep.) This is someone else with Gleason 9 following a radical open prostatectomy. The fact I fastened onto was that he is still around 7.5 years after diagnosis. When you have thought your end was imminent, that seems like a pretty good number! I know he is still around because I emailed him, and he replied the next day.

So where to from here? Obviously, I have to have the treatment required. The other thing is to do everything we can together, and do it now. (This assumes medical clearance, e.g. to travel.) Do I want to know how long that might be? Not particularly. The other thing I did today was to go to a jewellers in Camberwell, and persuade Jill to let me buy her something nice. It took some doing, but the sales lady and I overcame some spirited resistance. I could not get through without her, and I want her to have some token of what she means to me. I think she knows this, but I am learning not to take things for granted.

A big day, somehow. Der Fisch and I dropped the Camry off to be serviced at a local garage, and we walked home (about half a kilometre). This was my first walk since coming home. I have been a bit slack about this, but I guess the increasing sensitivity from the catheter, and uncomfortable temperatures, made this difficult. I was running out of inner pads, ascertained that the local pharmacist had some, then went and got them and some more cash out of the ATM. This was my first drive since coming home.

The internet is a boon to those recovering mobility, as before. I got the second lot of pads (which arrived while I was down the street). I ordered a bunch of T-shirts and a little bluetooth speaker (for listening to music while sitting in the courtyard). I also emailed the co-ordinator of a local Prostate Cancer Support Group, read a reply to a message I had sent to a prostate cancer survivor, whom I located through YANA (see below), and caught up with events via The Age, Guardian, and Facebook. These things were all done online.

The ‘net was also the source of  A strange place, a 30 page information guide to prostate cancer, from a terrific site, You Are Not Alone . (This site is included in my External Links.)  YANA is maintained by a bunch of prostate cancer survivors, the Australian wife of one of whom did the design. So it is a super functional site, fast loading (hooray!), with a huge amount of information available. The emotional impact of the PC diagnosis on sufferers and their partners is addressed. All is very non-sensational, and there is no pretension that the authors are medically qualified. The quality of the information reflects the fact that the site is built by survivors, so that they can share information and experiences with other survivors. They are entirely self-funded, so I was happy to donate them a modest sum for their web hosting and postage expenses.

The good old-fashioned phone also featured large today, communicating with family and Jeremy, my urologist. When I have spoken to everyone I will put an update here about some new information from the last of these. It was heartening to see marriage equality get up decisively. The hot weather which had kept me confined to barracks yesterday has lifted. There was quite a storm, replete with a huge crack of thunder, and an ozone smell from accompanying sheets of lightning.