Previous, December 2016-January 2019. Back to start, December 2013
Let's get the bad news out of the way: a PSA of 1.69. I had expected around 1.5 (based on a quick calculation before the oncologist visit yesterday) and hoped for around 1.4, so its the worst news I've had for quite a while. I've started taking Bicalutamide to block the small amount of testosterone my body (and cancer) produces but declined extra imaging as it probably would have showed nothing. My oncologist said the PSA doubling time (the most important metric of cancer growth) is around eight months. It's not a good idea to use just the two most recent data points to calculate doubling time, so I won't mention it here but it's scary. The whole bloody thing is scary and brings home what I we all know, but given my health to date is all too easy to sweep under the rug. I guess with cancer you should always be prepared for bad news, as my oncologist is, but with over five years of relatively good news it came as a bit of a shock.
Sometimes I feel like a rabbit in a spotlight - mesmerized and unable to move on. More often I'm darting off at high speed, on my bike. I pushed myself particularly hard on a 140km ride a few days ago and concluded later it was due to fear of my imminent oncologist appointment. I've actually been riding less recently; around 850km in February, which is my lowest monthly total for years. Since New Year I've felt less motivated, realising the only person who really cares about how much I ride and what my strava stats look like is me, and also had a bit more fatigue. I did complete the ACE 250km ride in January (and a couple of longish rides beforehand to ensure I was in good shape for it), but that was primarily because I had a ticket from the previous year (due to the accident I had). So far the extra rest days have made my riding stronger if anything. On a recent ride through the Bass Hills I got a Strava KOM (fastest ever for that segment), much to the surprise of everyone on the ride (photo from the ride below).
It's good to have the support of my partner, back from her overseas trip with our daughter. I have some regrets about saying I expected a PSA level of around 1.5. She was taught to be pessimistic from a young age and expected 1.6, but even that was not pessimistic enough. We try to be strong for each other and put on a brave face. Shedding of tears is done in private, as much as possible at least.
My daughter has started her university study and a couple of her friends who were once considered female now identify as being male. I find it interesting how mainstream views of the world change, and how my own views have changed. For most of my life the binary view has predominated. There were males and females. I was a strong advocate of viewing computer programming from the viewpoint of classical logic, where things are true (a correct result is computed) or false (an incorrect result is computed): a simple, elegant and beautiful view. But even programming is not that simple in reality. Sometimes nothing is computed (formal mathematical systems, including computation, have their limits) and sometimes we feed garbage into computers (how are we to judge the correctness of the result in such cases?). I eventually concluded that the binary view was not the best way to view the world of programming. I've written papers on this but it is hard to persuade the advocates of classical logic - simplicity has great appeal.
Similarly, the binary view of gender has its limitations. With this view, I am a male, I always have been and always will be. But it does not help in discussing degrees of masculinity (or femininity). Having been without testosterone for over five years I have certainly become less masculine. The change in hormones has chemical, physical and psychological impacts. I have found it a little confronting (perhaps less so than many men in similar positions) but also interesting. Having lived through this change I don't think it's just political correctness that makes me appreciate and support the non-binary view of gender. There are degrees of masculinity and femininity and degrees of fluidity. Sexuality is even more complex of course. I used to consider myself as being close to the heterosexual end of the spectrum, but sexuality is far from one-dimensional. I think a better analogy is to say I'm currently in the heterosexual low libido region of the (RGB) colour cube. For nearly everything, it shouldn't matter where you are in the gender and sexuality space, where you have been or what direction you are heading. We are far from that ideal but I hope the world moves closer to it.
Addendum (14/3): having written the above I Googled the side-effects of Bicalutamide. One of the "very common" (≥10%) side-effects is Gynecomastia. I had to look that up to find out it means growing breasts! The irony (or even humour) is not lost on me, but I think my life is "interesting" enough without that. In retrospect, the oncologist seemed a little cagey about side-effects and wanted to follow up in a month to see how I was going - I wonder it that was the reason.
Wednesday could not have been much better. It was one of those perfect Melbourne days where the autumn leaves glow in the sunshine against the bright blue sky, with barely a breeze to send them fluttering to the ground. I looked at my phone over breakfast and saw that a friend had made a donation to my fund raising page, bringing the total up to my initial target. I decided some time ago participate in the Peter Mac ride/walk to raise funds for cancer research. Fund raising is a bit of a pain for those who do it and the people they hassle (speaking of which, please donate via the link above and share it with all your friends:) but I've not done any for a while and the 100km mostly flat ride should be no problem for me. And of course it does a lot of good.
Next up was my specialist GP visit. I didn't really know what to expect, but hoped my PSA would have dropped a little at least. It had dropped a lot! From 1.69 to 0.24 - the level I had in 2015 and after my orchiectomy in 2017. The medication I was put on after my most recent oncologist visit seems to be working well. Research in cancer treatment is never fast enough but clearly a lot of progress has been made and I'm happy to help it along with fund raising and even happier to benefit from it. My other pathology results were ok - cholesterol a bit worse and blood pressure was high (I get "white coat fever" and it took a while to subside a bit). I will see an oncologist in a couple of weeks and hope he is as pleased as I currently am.
The lead up to getting my results was less stressful than on most recent occasions as I had an important distraction - a new road bike. Just after ordering it online a few weeks ago I felt awful pangs of guilt and the weight of the world on my shoulders. It's more than a little obscene that some people are able to buy such expensive toys on a whim when others have so little. And what hope is there when an educated and (I think) good person such as myself cannot resist the pressures of consumerism? At least its not a sports car or a yacht I suppose. And it is an amazing machine! Having assembled it on Tuesday, I took it on its first real outing on Wednesday after my GP appointment. Road cyclists are so lucky to have the Kew Boulevard just out of the city. Seven glorious kilometers of twists and turns over rolling hills in the Yarra Bend park, with great views and not a traffic light to slow you down. I smashed my best southbound time on the first attempt with the new bike.
In the afternoon I rode to La Mama Theatre in Carlton for the production meeting for my partner's show that is coming up in early July, Twigs That Never Took. I've been helping with the design and construction of the set and publicity (speaking of which, get some friends together and come along!). It's a much larger space than the last production and I'm looking forward to seeing the show again. What a happy day!
In the last couple of weeks there have been some very nice times. I saw my oncologist on Tuesday and my PSA had dropped further, to 0.17. Earlier it was my partner's birthday and we spent a couple of days in and around Warburton. The last night we stayed there it snowed on Mt. Donna Buang (see photo below; click for high resolution version) and we did more walking than I've done for a long time. The previous Saturday I did an extra-hard 150km ride from Warrugul through Gippsland. The days are getting longer, the sun has more warmth and as I sit here in the sun room I can see the blossom on our young apricot tree.
I often struggle a bit to remain positive during winter. The cold, drizzle and lack of sunshine take their toll. I've been cycling significantly less than the last couple of years. The weather has been poor and there have been some distractions. Production week for my partner's play was intense but I thought it went well. I had a flare up of an old problem with my lower back. It was particularly bad to I had some scans done, which revealed a couple of damaged discs, as I had expected. I was also a bit shocked at how much damage the cancer had done to the bones. But distractions and weather aside, I do feel like I'm slowing down. I'm not sure when I last felt energetic or strong and it's a little reminiscent of the Chronic Fatigue Syndrome days. It's not the cancer - the low PSA indicates it is currently controlled well. Perhaps it is old age - I do feel like I'm getting old and although it isn't fun, it is better than the alternative. I think its mostly the side-effects of having minimal testosterone.
Lack of testosterone has many physical and psychological affects. When I started taking Bicalutamide I noticed feeling less confident and more fearful. I've adapted, but not overcome it. I recently had an anaesthetic for a filling at the dentist and had a very unpleasant reaction when it was wearing off - feelings of emotional pain, depression etc, which I attribute to being not quite right due to the cancer and side-effects of treatment. Part of the feeling of not being strong etc is just in my head. I know from my gym workouts that my upper body strength has not significantly declined over the last couple of years and I'm still riding with the same bunch of cyclists. Despite us all getting older, at least some are riding more strongly than ever. It feels like I'm often at the tail end of a high performance group, with plenty of very good excuses for why I'm not better. But those ahead of us are always more visible than those behind. Whether it's people who are faster at cycling or smarter or more talented or more courageous or more beautiful or more privileged. It's helpful to be comfortable wherever you are, to realise most attributes are not one dimensional and to respond with admiration rather than resentment for those ahead and support rather than scorn for those behind.
With help, I have been getting on top of various other aspects of life, arresting the trend towards chaos. I've bought another car, having been without a drivable one for over six months, caught up on overdue tax returns and made significant process in organising my finances better plus getting some home maintenance done. So life goes on, in a pretty positive way.
Today marks six years since my diagnosis. Six times around the sun on this all too fragile planet that is our home. Six years of rising CO2 emissions, rising temperatures, melting ice, bleaching coral and burning forests. As I write this, the COP25 climate conference is on in Madrid. All the science says the current trajectory is leading us to disaster and tipping points are close. We are in a climate emergency and huge changes are needed now. The many promising actions occurring are nowhere near enough. The lack of political will in countries such as Australia, Brazil, Japan and the USA is appalling. I feel a tinge of guilt due to the excessive carbon footprint I had for much of my academic life, travelling to overseas conferences most years until 2000. But there is little point in dwelling on the past in an emergency. What I find more upsetting is recent actions of the people I love, care about and respect most. Despite being some of the most privileged people in the world, nearly all of them are still part of the problem rather than part of the solution. In the last couple of years their air travel alone has vastly exceeded their carbon budget (the limit on CO2 equivalent emissions per person required to avoid catastrophic climate change). I feel I should do more. Sometimes I despair.
At least I'm still very much alive, despite initial predictions. On Tuesday I had two bits of good news. First, my PSA has dropped even further, to 0.14, and other pathology results are fine as well. Second, my appointment as a senior fellow has been renewed again. I'm always conscious that my good news is not necessarily shared by everyone reading this. I was shocked and saddened a few days ago when I heard Nat Colossimo had passed away. I met Nat via the Peter Mac Cancer Surgery team, and we did the Unite to Fight Cancer fund-raising ride just a month ago. I knew treatment options for his prostate cancer were running out but did not realise how aggressive his cancer was. On a brighter note, another friend with double hit lymphoma has had a stem cell transplant and things are looking hopeful for him.
I was one of the top fund-raisers for the Unite ride (raising over $5000), but over-did it on the ride and the following days. I had been trying to improve my strength and endurance, having been lucky enough to get onto another bike packing ride organised by Sarah and Jesse (one advantage of spending too much time on Facebook - it was booked out almost as soon as it was announced). I have not been riding as much this year, particularly over winter, and its a tough three-day ride with lots of climbing and lots of rough tracks. On the Peter Mac ride I was getting over a nasty cold that had put me in bed for three days. I was at or near the front of the 100km group, working hard for almost all the ride, and did another 30km or so as well. The next day I did a 100+km ride with plenty of hills out to Strathewan and back (so much nicer than riding through the SE suburbs of Melbourne) and two days later I did another 100+km ride with a couple of climbs up Mt. Dandenong. The next few days I started to feel quite unwell and the morning of my next planned ride I felt too nauseous to eat. I spent a day in hospital, was diagnosed with Meningitis and hardly ate for three days. A few days after hospital I visited my GP and was diagnosed with shingles (the same virus caused the Meningitis). I was in a bad way. Lots of pain killers, anti-nausea, anti-viral and other medication plus bed rest. Then when I was starting to feel a bit better another three days in bed with a nasty cold.
Instead of giving up on the bike packing I decided to try to balance the rest my body needed for recovery with some riding to retain some strength and endurance. It was always going to be a marginal proposition and many advised I should give up on the ride, listen to my body and rest rather than risk getting sick again. But I'm stubborn. Very stubborn, and very keen. And I reckon listening to your body is one of the main causes of obesity, heart disease and early death. It certainly hasn't lead to any gold medals. In my experience these rides are tough but very rewarding. They are great fun in themselves and they help keep me feeling more positive about my health, irrational as this is. It's my way of saying "fuck off" to the grim reaper. Like an impala leaping high in the air when threatened by a lion, I'm saying "you are not taking me yet; not for a long while". Have I struck the right balance and was it even possible? I've not been able to test myself on rides of similar difficulty but I'll know soon - barring disasters I'll be on a train to Stratford early tomorrow morning, then riding to Dargo. The next day will test me: riding up to Mt. Hotham then down to Bright. If I feel ok after that, on Sunday I'll be riding to Benalla via Goldie Spur up and over Mt. Buffalo, hopefully in time for the last train to Melbourne (a relatively flat ride to Wodonga would also get me to a Melbourne train). Fingers crossed!
Addendum: made it! I had a great time though Goldie Spur was a challenge. Below is a pic from each day: Dargo river in the evening, Snow Gum regrowth along the Dargo High Plains road and the Goldie Spur climb. I've also had my first proper gym workout for over a month. I lost 15-20% of my upper body strength but no doubt I can get it back if I work on it.
A new year and a new decade: 2020 certainly sounds like the future and its not a good one. When I was diagnosed I did not expect to live long enough to witness the apocalypse. My last post was from early summer and I mentioned the climate emergency. There were a few bushfires burning at that time. Some kept burning and became huge - big enough to create their own weather. New fires started from lightning strikes. 2019 was the hottest year on record for Australia. We had the hottest day on record in December then that record was smashed again two days later. With the heat and prolonged drought in much of Eastern Australia the extent of the bushfires was unprecedented, with rainforests that had never burned before being wiped out, mass evacuations, people killed, properties destroyed and well over a billion animals dying. It was shocking, confronting, depressing and scary. Smoke shrouded our capital cities, creating the worst pollution in the world at times. I took this photo in the late afternoon of January 6th as we walked past the university wearing makeshift masks, as nearly all shops had sold out of P2 masks.
Eventually the rain came, and it was red. Red from the topsoil of drought-stricken farms. And there were hail-storms and floods. I was in Adelaide with family and cycling friends for the Tour Downunder at the time, having cut short a cycling trip to Bright earlier due to the fires. There was more red rain when we returned home. And while the extreme weather was ravaging Australia, across the world in Wuhan the first Covid-19 infection of humans started. A pandemic has not yet been declared but with thousands of people infected across every inhabited continent it seems inevitable. Yesterday there was the first death in Australia. I find it all hard to take in. I want to use my sense of humour - thats why I use the term apocalypse - but the world is in a seriously awful state.
I'm still fit and strong at least. I lost some weight when I was unwell in November and have mostly kept it off. A couple of weeks ago I rode from Portland to Geelong along the coast, a total of over 400km and 3000m of climbing in almost 16 hours of riding and still had energy at the end of the day. I did a bit too much at the gym a bit too soon afterwards, which resulted in a touch of fatigue but I'm back to hard rides. As I write this I'm thinking of my oncologist appointment tomorrow and hoping my health will not be following the example set by the rest of the world...
Yay! Great news: PSA down again, to 0.12. When Bicalutamide is effective its often for only six months or so. For me it has now been a year. My oncologist once has a patient who responded well for three years - lets hope I can match that!
The COVID-19 pandemic is sweeping the world. The number of confirmed cases has just reached 500,000, two days ago I heard the son of a friend was infected, yesterday the first deaths in Victoria were announced, 8,000 people in Italy have died and the hospital system there has been overwhelmed. Most countries are shut down to varying degrees. In India, a billion people have been told to not leave their homes for three weeks in an attempt to avert a catastrophe there. Even if such measures are successful, the worst is yet to come and the scale of human pain and suffering is hard to imagine.
A couple of nights ago we watched a Polański film on TV. It was a welcome distraction but all too soon the horror of reality returned again. For me it was déjà vu - a similar experience to when I was first diagnosed. In December 2013 my reality suddenly changed - it seemed my future had been stolen. Now the same applies to everyone to some degree. There is fear, and more than a little selfishness. There is also grief. Grief for others who will die, grief for their loved ones and grief for ourselves, robbed of the futures we expected and planned for. In one of my early blog entries I noted its hard to take in. We use distraction and denial but reality keeps hitting us, and it hurts.
After I was diagnosed I said "every happy time is tinged with sadness" - sadness of missing the future happy times that had been taken from me. I don't feel this way with the changed reality COVID-19 has brought. The vast majority of people will survive and I'm very hopeful I'll be one. The happy times will not be quite what we may have expected but they will be there. Yesterday I rode up Kinglake. There was no cafe lunch for me, no coffee and no friends riding with me. Just me, my bike, muesli bars and the like to eat and hand sanitiser for when I refilled my water bottles. It was a beautiful sunny day and as I sat alone eating lunch I admired the wonderful view. I was happy.
I've always tried to update my blog soon after getting medical results. It's been almost a month this time and I was told the good news that my PSA was the same, 0.12. Why has it taken me so long? Health news was a rather drawn-out affair, the pandemic and other things have affected me emotionally and the situation changes all the time. By the time I can take stock of the current situation and figure out what to say, things have moved on. On the health front, I had an appointment with my specialist GP a couple of weeks after the oncologist. It was changed from a face to face meeting to a tele-health appointment - I just needed to be able to take a mobile phone call. One advantage was it had only a slight impact on my ability to ride my bike. It was a nice day and I simply stopped in a sunny spot on the way to Hurstbridge for a while, waiting for the call. It was a bit of a let down as somehow my pathology results hadn't been forwarded to the doctor. Fortunately my oncologist had glanced over them and said they seemed OK; I just asked my doctor to call me back if and when she got the results and there was anything out of the ordinary.
Tele-health appointments are one of the few benefits of the COVID-19 pandemic. The first I had was several weeks earlier. My lower back problem had flared up again and I was unable to walk for a couple of days - the disc seems to be gradually deteriorating. I was able to speak to my GP and get a prescription for strong anti-inflamatories sent to the local pharmacy. My most recent medical appointment was a follow-up for my eye, affected by shingles last year. I would have expected an appointment at the Eye and Ear hospital some time ago but COVID-19 intervened. Instead, I was up on the Kinglake ridge, on a 160km bike ride. Admittedly, it was a bit cold sheltering behind a log for half an hour waiting for the call. There was a bit of a breeze and it was around ten degrees after a frosty morning but I knew it was close to a mobile phone tower, there was sunshine and the view down Bowden Spur is one of my favourites. I was told I should get my eye checked regularly for the rest of my life. Hopefully the pandemic won't adversely affect it's care. Overall, my body seems in pretty good shape. I've been keeping up with riding (nearly all solo and carrying all the food I need to avoid cafe stops), though at times I've had to battle fatigue and getting out of bed early on cold mornings is extra hard without the motivation of organised rides with friends. It's also been very hard to motivate myself to do workouts at home at times, and I have lost some upper body and core strength but not too much I think. I've also done online yoga and pilates classes run by my gym and quite a few local walk with family (see pic below).
I've also had some intellectual exercise with a couple of colleagues, resurrecting an algorithm animation package that was developed under our supervision years ago but went the way of most software that is not maintained. I did some programming for the first time in years and designed a language for expressing algorithm descriptions with stepwise refinement. Emotionally, times have been tough. Oncologist visits are always confronting, but as well there have been multiple aspects of the pandemic, the brutal killing of George Floyd in the USA and subsequent "Black Lives Matter" protests around world, my brother was diagnosed with prostate cancer and various details of my father have surfaced (such as his suicide when I was a young child) due to interest from a historian. My brother's diagnosis was handled particularly poorly. After a biopsy he was initially given the all clear, which he communicated to me, then he was told there was a mix up with the results and he had cancer - not the ideal way to ensure emotional preparedness! Fortunately he was later told that the prognosis is good and they will just keep an eye on it for now. It was a bit of a shock for me and brought back awful memories. I felt for my brother but also realised a lot of my feelings were centered on me, and that made me feel guilty. I realised I have a lot of unresolved grief related to my diagnosis and this had re-surfaced. I guess it's likely to stay unresolved. Since diagnosis, I feel haunted by death. It is easier when I can but such thoughts aside, but with oncologist visits, a deadly pandemic rolling on with horrific consequences, my brother's diagnosis and even my father's death popping up again after so many years, it is not surprising I have been emotionally fragile. Mostly I have been OK but it hasn't taken much to get the tears flowing.
Internationally, the pandemic is slowly being brought under control in some countries (taking an optimistic view at least). In the USA new infections were dropping but they are now significantly increasing again - president Trump has a lot to answer for. Brazil has been a disaster and is still in dire straights. I was keeping my eye on India, with around a quarter of the world's population but rarely mentioned in the news here. It was a slow starter but with exponential growth that doesn't matter greatly. After their shutdown the growth rate reduced but not enough. It is like a runaway train on a downhill slope - slowly accelerating with inevitable consequences. For quite a while they had the eleventh highest number of infections of all countries then overtook several countries to be fourth and now it is third.
At the time of my last blog entry our whole state had just been put into "stage three" lockdown, with only four reasons to leave home (exercise being one of them, fortunately), limits to the size of groups, many businesses forced to close, take-away food only at cafes etc. By early June some of the restrictions started being lifted and infection rates around Australia were low. They stayed low everywhere except Melbourne, an the inner north and west, where we live. A week after gyms opened, ten postcodes (including ours), went back into stage three restrictions. I said on Facebook:
I'm angry. Angry with the people who have touched me without my permission during this pandemic. Angry with the security guards at quarantine hotels who behaved irresponsibly and spread COVID-19. Angry with the idiots spreading misinformation. I have behaved responsibly. I want to ride my bike with friends and have smashed avocado, cappuccino and cake at cafes with them. I've had 60+ years of being a privileged white male and I'm not used to having my opportunities limited because of things that are not my fault!Perhaps Facebook is not the best place to use irony as a tool to get people to think about privilege and relative disadvantage. Our household got tested four days ago as we were asked to and this morning we all received text messages saying no virus was detected. Meanwhile, infections were discovered in housing commission tower blocks and these were immediately locked down completely without warning, so the (mostly very vulnerable) occupants unable to leave their small apartments. And the infection rates have continued to rise sharply over recent days. As I write this I'm listening to the premier of our state announcing that all of Melbourne metropolitan area plus a rural shire will be returning to stage three restrictions, plus additional restrictions on where we are allowed to travel to for exercise. Things are grim, but at least we have a premier who takes advice and acts decisively, even if the plans are not executed with perfection.
Again it has taken me weeks to update my blog with the latest PSA result, 0.2. It is a big rise in percentage terms but still very low so there is no change in treatment. I'm not sure how well it has sunk in. My mind has been blocking things a bit - conditions have been tough. On my last day before the Melbourne shutdown I rode up to Healsville via Kinglake (just outside the metro area; it has been out of bounds since then) and back via the lovely Butterman's Track:
Restricted to the metro area, I was still able to do very enjoyable rides. Once or twice a week I would have a good drink, take two bidons full of water and enough food and do a solid 100+km solo ride with no contact with anything except the occasional wildflower (it has been a wet season and at least the start of the orchid season was spectacular). Most other days I would stay at home. But COVID-19 cases were still climbing (peaking at over 700 new infections in one day) and stage four restrictions were introduced. Exercise was limited to one hour per day, within 5km of your home - a disaster for me (other restrictions such as shutting down most non-essential industry and imposing a curfew didn't affect me much). I'm also convinced that riding on most days close to home on relatively busy roads and the occasional very busy path is actually less safe than my previous riding. I lasted about four days before being hit with a bout of depression, something that has repeated every few weeks. Riding became something to do for health rather than pleasure. I found a small local loop that is reasonably flat, has no traffic lights and not many cars and on a good day I could ride 34km in an hour. I've now done more than 500 laps - around 340km and eleven hours. On another loop I could do 500m of climbing. Some days I would take a rest from cycling and walk with Donna. Plus there was work to be done in the garden, a bit of work on the algorithm animation system and even some work on the compiler for the Pawns programming language I developed years ago. Not much fun bit I was surviving.
With the tight restrictions imposed the infection rate in Melbourne reduced quite rapidly and we were allowed two hours of exercise per day (along with various other relaxations), reducing the pressure I feel to make the most of the allowed time. I'm always afraid of losing strength and not being able to recover it. This is not entirely irrational since I have no testosterone but despite rarely being motivated enough to do other exercise at home I've not lost too much upper body strength so I'm probably a bit over-worried about it. In another week the exercise limit was scheduled to be relaxed, assuming the infection rate had dropped to five per day, but it looks like that won't happen and the 5km limit will be around for a while more. As I write this the Premier is giving his daily press conference giving some details of the bad news.
I've had one friend with COVID-19 - a smoker, so it was very worrying for a while but fortunately it was a mild case. Being a relatively young and fit cyclist no doubt helped but working in health care he was expecting to get infected at some stage. Despite all the precautions, the health sector has had a large number of infections. Aged care is the other worst hit sector, with many vulnerable people dying. Mum's nursing home has been spared to date but was locked down most of the time. Between stricter lockdowns and before stage 4 restrictions I was able to have a brief "courtyard" visit. Since then was occasional video chats via computer, with a nurse helping mum. She declined further and became less responsive. Possibly the lack of interaction made here decline faster and on a couple of calls last month she was dozing off and not really responding at all. A couple of weeks ago we received a message that she was moving to palliative care. In the evening she had declined further and my brother visited her. She died later that night. It has been a sad time, but we have been losing her gradually for years and in the end she was just a shadow of her former self. Mum was a remarkable woman and we are still finding out more things about her from people who have contacted us after hearing of her death. I won't try to do justice to her life here but many of the values I hold dear have come from her and others that we share (such as being vegetarian) we both arrived at later in life.
The COVID-19 infection rate kept falling, restrictions were eventually eased and Victoria had no new COVID-19 cases for over forty days - yay! Everyone is hoping that the revamped quarantine and contact tracing systems will be more effective this time around and allow another wave of infections as they did previously. A few days ago the first quarantine cases were announced. Some countries are just beginning mass immunisations, exceeding expectations also, though the number of COVID-19 cases is many countries is still horrific. The USA, with all its resources, has had an epic fail of leadership. At least Trump lost his bid for re-election (despite his baseless claims to the contrary). Early official modelling at the start of the pandemic suggested that eliminating COVID-19 would be extremely difficult and suppression was the only realistic strategy. I did a little reading about the modelling and was shocked at how simple (arguably simplistic) the model was. It did not take advantage of modern computing and could quite feasibly have been done with a pencil and paper. I read an article arguing that agent-based modelling (much more computing intensive) was a far better approach and it suggested elimination may be a realistic goal. I had to agree. Although the Victorian government did not officially adopt an elimination strategy, they did take heed of the better modelling and it turned out to be very accurate: a quiet victory for computer science.
On my first day of freedom I repeated my Kinglake/Healsville ride, with a couple of extra hills. That plus a bit of additional exercise was a bit much and I suffered a bout of fatigue, which lead to my lower back problems flaring up again. As I was getting back into upper body exercises my muscles felt they were seizing up. I was lacking energy and experiencing quite a lot of varied pain. It felt very similar to the period just before I was diagnosed. Although I knew my PSA must still be low and my cancer not very active, I was scared. At first I didn't want to upset Donna so I suffered in silence, but it turned out she was thinking the same thing. I think during lockdown my body lost some of it's endurance and ability to recover quickly from hard rides but has been improving since. The Saturday before last I did a pretty tough gravel ride and on Wednesday I rode over 300km. It was kind of impromptu - the possibility had crossed my mind but I hadn't made any real plan and decided to see what I felt like doing on the day. I got up early, in time to meet friends in St Kilda who were going to do a quick ride to Mordialloc and back but I kept going, and going.
What would motivate me to do such a thing? My oncologist appointment was the next day. My PSA has increased to 0.24 - a lower percentage increase than last time and not too bad under the circumstances. Other blood tests were also ok and I also had another bone density scan recently and my bone density declined less in the last two years than the previous two. Riding is one way I cope with the anxiety leading up to PSA test results and doing extra long rides makes me feel my demise is more distant. I've done a 300+km ride in each of the last three summers and felt a bit under pressure (only from myself) to do the same this summer. Now the pressure is off and, having done another solid ride last Saturday, it seems my body is able to recover reasonably well again, in time to head up to Bright after Christmas. With all the tests, results etc I actually forgot the seventh anniversary of my diagnosis - I've done amazingly well!
I'm also adjusting to more "normal" life again. I was socially quite isolated since the early in the first wave of infections. We were conservative when restrictions were eased at the end of the first wave (my first time on public transport since early this year was about a week ago). I felt significant post-lockdown anxiety when restrictions were first eased. For most of my life I've felt rather awkward socially and it has been tough re-adjusting, especially with larger groups. I saw my brother for the first time in months and with our immediate families we scattered mum's ashes in the Yarra river, close to where she once lived. It involved a bush walk along the river - something mum would have enjoyed greatly. She was very much against having a funeral, or any sentimental gestures such as what we did, and wanted her body donated to Melbourne University. Due to COVID that was not possible so she was cremated and we ended up with her ashes. I think funerals and the like are for the living, not the dead, and it was fitting that her remains were returned to nature in this way.
Our daughter is becoming more independent. This year she wanted to have a party with a small number of friends, and was not so keen on having parents around. So for the first time we missed her birthday and had our anniversary (28 years since we met) with just the two of us, away in Marysville for a long weekend. Lots of lovely walking together (see pic below) and I also squeezed in a quick meetup ride up to Lake Mountain and back. I do feel I should be more productive in some ways but life is pretty good overall.
I didn't prepare myself for bad news but I received some a month ago (writing up this entry has been a bit of a struggle). I did a quick calculation to figure out what a reasonable PSA result would be just before my oncology appointment but mostly I had tried to push such thoughts aside. There was underlying stress but I wasn't thinking about the state of my disease. My PSA had jumped to 0.37 - still very low in absolute terms but a significant jump in percentage terms. My oncologist was apologetic, which is never a good sign. It seems likely that the medication I'm currently on is no longer effective and he said to get another test in time for an appointment in six weeks time. It shouldn't have come as a surprise as it has been two years and it is rare for the medication to be effective for that long. I felt fine for the first few days but then my emotions kicked in.
I'm still very fit (riding up hills faster than ever in fact, though not recovering so well and balancing exercise with rest to avoid bouts of fatigue has been challenging) but it's hard not to be depressed when you take another step along a path that (almost) inevitably leads to an unhappy end. Is it particularly difficult when you don't know what will come next. I wish I had asked the oncologist what the likely next treatment would be. I feel like it would lessen the anxiety and I may be able to prepare for whatever it is. Easter was a particularly tough time. I caught a cold and though I should do the right thing and get a COVID-19 test, even though there had been no community cases for four weeks and I had no contact with people from elsewhere. For some reason (perhaps Easter) my test took a very long time to process and I was never contacted with the result. By the fifth day of staying at home, not exercising, sleeping alone, not touching anyone and feeling like whenever I touched anything without washing my hands first I was potentially spreading disease, I was in a bad way (see pic below; the current rules here are that you must self-isolate while waiting for a COVID test result). We eventually found out the test was negative, of course, but the episode was far worse for me than it should have been and I think may have had a lasting effect on my mental health. I contacted some local MPs in an attempt to improve the system for others.
I've been trying to do the right things for my mental health. I ride lots, of course, and during rest times often go for walks with my partner and/or others. I seek out sunshine, though there hasn't been much of that in Melbourne in recent days. I try to do good things for others. I've delivered our delicious figs far and wide. I've met up with several riders in the Indian Pacific Wheel Ride as they have ridden through Melbourne on their way from Freemantle to Sydney. I've donated money to help buy back and protect some of the Daintree Rainforest. I could have seen more friend and talk more about how I feel but I'm not feeling social and feel like I would be a bit of a burden. Expressing myself in Facebook doesn't seem to be an effective way of getting real interaction with friends. I've not seen my psychologist for a while - I feel my depression is a reasonably rational response to the situation, though a chat with him might be beneficial and he might even suggest some strategies. I've wondered if anti-depressants would be a good option. One thing that seemed to help was getting another PSA test done yesterday. Normally it results in additional anxiety but I feel a sense of relief that the wait is almost over. My oncologist appointment is next week. I don't expect a good result (particularly since I rode 130km just before getting the test done). Hopefully I'll be able to write up a blog entry a bit more promptly this time around.
Its been a tough few weeks and I'll have to work on strategies to make it easier in the future, but I felt somewhat relieved after my oncologist visit yesterday. My PSA had a small increase, to 0.4. This is still consistent with a doubling time of around six months (which is not good and suggests to me that the current medication is not working), but the oncologist said doubling times when the PSA level is low are not so reliable and suggested staying with the same medication for now, with slightly more frequent tests. I guess with a low PSA there is no urgency to move onto the next medication. I asked about what options come next, as uncertainty is on of the things that has increased my stress. There are a couple of older medications that are generally well tolerated and probably worth trying. Then there is a stronger form of hormone therapy that tends to cause more fatigue. Later there is chemotherapy and clinical trials. I can't say I feel good about the result - it would have been much nicer if the previous result was an aberration and I had a lower PSA this time around. But I feel a bit less stressed at least and prepared to keep on living the way I have been. Another fast ride getting up before dawn today, a two day bike packing trip this coming weekend, a few push-ups and chin-ups (I almost gave up on these a while ago) and occasional pilates at home.
I've been mostly thinking about my own problems recently, but a much greater tragedy is unfolding elsewhere with the pandemic getting worse in several countries, despite vaccines. As I feared, India is being hit very hard, with over 300,000 new infections per day for the last week, oxygen running out and people being turned away from overflowing hospitals. I expected this would happen much earlier but somehow it looked like they were getting things under control. Perhaps they became a bit complacent. Huge religious gatherings didn't help. Heart breaking.
If this upsets you (and you are in Australia) you can call Lifeline on 131114.