If you want to catch up, start at the beginning and work your way back.
I hadn’t been widely broadcasting what has been going on since December 2023, but now that I am improving steadily feel like I am over the recovery hump (really!) when people ask “how are you?”, I am referring to this page.
[The final update?] It is now almost 8 weeks over 3 months since the surgery (Feb 28th 2024) and all I can say is I feel awesome. I have a lot of energy and am almost fully recovered. Let’s just say that whenever I hear a joke, no matter how funny or not, I continue to piss myself laughing. But it is getting better.
One last thing: If you are a bloke over 50, get your damned PSA level checked regularly.
Thanks for reading.
[UPDATE 28th March 2024] Four weeks after surgery, I have had the first follow up appointment with the surgeon, he must be pretty confident with his work, he didn’t even look at the wounds on my belly. The main thing he emphasized was that I still have to be mindful about lifting >5kg or straining my stomach muscles for the next couple of weeks to avoid a hernia. His letter to my GP opens with “Stephen came into the rooms today with his wife things are healing up well.” which pretty much summarises things.
You may have read where I mentioned that a Trial of Void I had to undergo sounded like a middle ages witchcraft event. To continue the comparison, check out some of these rather brutal looking continence devices and see if you agree with me – maybe if they were pink and fluffy…
[UPDATE 21st March] We just had 5 days cabin camping at Woody Head with 9 friends. I turned off my phone! It was fantastic.
[UPDATE 14th March] Catheter removed. Does this say it all?
What a relief…
[UPDATE 11th March] This covers a few days because despite not doing much, I couldn’t get to it.
Another plan goes the way that the best plans do. This plan was to remove the catheter and then go home from hospital last Thursday. Before they can do the procedure, an 1100hrs CT scan is booked to make sure everything is OK in my abdomen. But one scanner is on the blink so at 1300hrs I am taken down for 3 scans.
The 1st scan is of my abdomen as is. The 2nd they back-fill my bladder with some sort of dye. When I say “fill”, I actually mean “FILL”…like really “fill”, to the point of discomfort, especially when my bladder hasn’t been used for over a week. Then they drain my bladder and one final scan.
Back to the room to wait an hour for the scan results. Meanwhile, there is excitement building in anticipation of the catheter removal and a Trial of Void – which sounds a bit like what might happen during the witch-hunts of the 1600s. But wait, what does the doctor spot? Here is the join between my bladder and my urethra*
*not actual pipes in my body
We untrained viewers of the image likely won’t spot a small haematoma (bruise/clot) against the join. The surgeon is concerned that removing the catheter, which is a tube within the tube might cause the tube to deform, so he decides catheter should stay in place for another week. While disappointing, I do understand and am loaded up with catheter related supplies to take home. Someone local who needs it, is going to get a catheter supply windfall next week.
Since then I have noticed a definite correlation between how much activity I undertake, and how much I crash at the end of the day. For example on Friday night we undertook our first social outing (dinner at friends’) and then on Saturday morning, during the regular platypus survey, I waded about 100m through waist and chest high grass – the technical medical term for this is “stupid” and I spent the rest of the day sitting on the couch.
I am now counting down the days (3) until the catheter is removed for real. Then it is off for some (cabin) camping at Woody Head with a mob of friends. Onward and upward!
[UPDATE today…I think it is the 6th March] It is always good to have a plan. The plan this week was to continue to feel better, then come to the hospital on Thursday 7th to have the catheter removed. But what is the point of having a plan if you don’t have the plan change on you?
Monday we had an appointment at centrelink so I can become a pensioner. They have really helpful financial advisers who I am reluctant to blame, but centrelink is a soft target. In the middle of the meeting I signal to the Tall Girl that I am feeling a bit light headed, not, as she says to everyone else “hallucinating”, though having met someone helpful at centrelink, maybe I was. Home and straight to bed, wake up a couple of hours later feeling like crap (one level below feeling like shit).
Tuesday morning I wake up, now officially feeling like shit. I had to ring the surgeon’s office anyway and during the call I mention that I would like to speak to him about how bad I feel. He calls back and suggests I take some pain relief and see what happens. Ten minutes later his receptionist calls and says “he’s changed his mind, come to the hospital emergency room as soon as you can”. I didn’t have anything else to do.
Blood taken. Urine donated. CT scan done. It seems I have a UTI (urinary tract infection) which isn’t surprising given there is a tube leading from the outside world directly to my bladder.
A couple of hours in emergency and back to the same ward I was in, where there are regular comments from the nurses “what are you doing back?” as they take obs and hook me up to antibiotics. Within a few hours I am feeling a lot better if you put aside the fact that I had major surgery 5 days ago.
Today I had a call from the hospital “don’t forget you have an appointment tomorrow” to which I replied “I came 2 days early to be sure I was on time”.
Next up is what is intriguingly called a “trial of void”. First they back flush into my bladder and make sure the surgical join isn’t leaking, then I have to pee twice before they let me go.
Maybe then I will have nothing stuck in me for the first time in about 3 months.
What are friends for if they don’t send messages like this…at least it no longer hurts to laugh.
[Update March 3rd] Good news from the surgeon that they got the entire margin i.e. all, the tumour. Theoreticallly I am now cancer free. Hooray!
My body is feeling justifiably traumatized but it is starting to settle a bit. Finally some movement in the bowel front…you might have heard me cheer, it was possibly the happiest crap I have ever had! All the wounds are pretty tender and I am unintentionally defensive around the Tall Girl when we cuddle. It also hurts to laugh or cough.
Next step is to have the catheter removed on Thursday. From then, things can only get better.
Thanks for reading this. I truly appreciate the support I have been receiving.
[UPDATE March 1st] Success! I have managed to fart which means my bowels are back in action (almost) and I have had my first real food for two and a half days. Morphine button is gone. Cannula is gone. Drainage tube is gone. All that is left is a catheter that is going to be in place for a week.
I am pretty tender around all the wounds. There is other weird body stuff indeed. Because my abdomen was inflated with gas, I have been burping a lot and today I have sore pectoral muscles from being stretched, and when I press, it kind of bubbles under the skin. Perfectly normal, I am assured.
I’ll be heading home later this morning…hooray! But no driving for a week and no lifting more than 5Kg for 6 weeks…that’s going to be hard.
[UPDATE 29th Feb] Did they really make 6 holes in my abdomen and using a robot remove my prostate? Because 18 hours later my pain score is about 3/10. It is a little uncomfortable but nothing has really hurt yet. This may change when I get out of bed for the first time.
The worst parts of this so far is the sticky tape on the hairs of my arm and being woken every hour during the night for blood pressure etc. (now extended to every 2 hours). Oh…and food…haven’t eaten solids for 36 hours…
Theoretically (and hopefully) I am now cancer free.
This is good.
During the procedure, my kidney stone was blasted and removed – if this is your first time reading, regard the stone as a side adventure alongside the main event.
I woke in the night and loved this play of shadows on the wall.
[UPDATE 9th February] Everything and everyone keeps emphasising that if it is possible to have surgery done via a robotic device, it is a much better option. It is actually quite extraordinary, watch this:
The Gold Coast University hospital doesn’t have a robotic surgery unit working yet. Apparently it is ramping up, but it is likely to take a while.
[ASIDE] When I was walking to the theater for my procedure on the 14th February, I spotted a Da Vinci robot in a hallway and in a very nerd-like manner went and fawned over it, wondering why it would never be used on me. [/ASIDE]
Today I had an appointment with a private urologist and we have decided to bow out of the public system and now have private health robotic surgery booked for February 28th.
Some of the advantages: overnight in hospital instead of 3 – 5 days. Drive after 1 week instead of 4 weeks. Less pain. Quicker healing. Less invasive – 7 small cuts instead of 1 very large one.
Apart from that, anyone can have an operation with a knife, but with a robot? That has to qualify as cool. But it won’t be as impressive as in the future when an autonomous robot does it.
One thing that the urologist emphasised as being really important is that the kidney stones are completely gone. Just consider the implications of a fresh join between my bladder and my urethra and a 7mm boulder decided to dislodge from my kidney and try to force its way past.
The rate at which things change from day to day is dizzying. Hopefully things are now locked in.
[UPDATE 30th January] There’s quite a bit to tell.
Firstly the really great news: The PET scan didn’t find the prostate cancer cells anywhere else in my body. Obviously this is a huge relief.
The good news/bad news is that I am going to have my prostate removed through the public health system in February. Currently the date is set for Monday the 19th, but that may change after we see a private urologist on February 9th.
It is good news because it is great to have a date that is only 3 weeks away. The bad news is that it is serious surgery with some not-so-much-fun side effects.
The other option was radiation, but 2 hours per day, 5 days per week for 6 – 8 weeks is a huge ask. Also, you can have radiation after surgery, but you can’t have surgery after radiation.
Again the health system showed a level of broken-ness. We had to make a choice between radiation or surgery on the spot. Yes, we could go home to think about it, but would have to come back in about a month to let them know the decision. Cruel? You decide.
More when I know more.
There has also been a good news kidney stone update
What’s going on?
On January 18th it was confirmed that I have prostate cancer…sigh… Needless to say, this sucks.
A lot of people have questions and I am happy to share and discuss, but it is good to have a place where it is all in one spot. So here is my FAQ page.
If you have another question I welcome it whichever way you want to contact me. I seriously want people to ask what they need to know.
I am not sure how I will go about updating this if there is anything new, but you will know when you read it. Something like [19/1/24] A thing happened
What are the details?
There is some stuff here that the medicos will understand, feel free to do your own research by clicking the links.
I had increasing PSA levels over a few months. This led to me having an MRI in early November 2023 which revealed a lesion with a PI-RADS score of 5.
In early January 2024 I had a biopsy and that determined that the lesion is malignant and has a Gleason Score of 4+3 = 7 and an ISUP grade of 3
The technical term for this is “not good“.
Are you sick?
Nope, not at all. If not for the test results I wouldn’t even know this is happening…for now. I suspect that down the track it might become obvious that something is going on.
What are you doing about it?
Ahhh…now this is a story in itself. The people in the public health system are mostly fabulous. But the system itself is seriously flawed. Where do I start?
I had the MRI in November, I didn’t receive the results officially until 42 days later. Luckily there is this thing called the internet and apps, you can look at all your imaging stuff online. I don’t pretend to understand the MRI, but I can see the thing.
Then I had the biopsy on January 4th. The results came through 4 days later dated the 8th. How do I know? I happened to be at my GP for something else on January 18th and he looked it up. He also spotted that there is an appointment at the hospital, that I don’t know about officially, on February 23rd – only 46 days later.
Fortunately at the beginning of all this I made an appointment with a urologist privately for early February – it was the earliest I could get when booking in November!
The next thing will be a PET scan to see if it has spread
Do you have much support?
Oh yes. There is an abundance of people doing different things.
Needless to say, family, friends, fellow Clown Doctors, backgammon players and just about anyone I know (who knows about this) has reached out to me.
Because I have been a volunteer fire fighter for over 30 years, I am covered by WorkCover, since prostate cancer is a disease that is deemed to be directly caused by exposure to smoke and/or chemicals. So it is seems they are going to take care of out of pocket medical and associated expenses.
So right now, I feel very loved and will be able to call on people if we need anything. But, as I said elsewhere, right now, nothing has changed. Except my car…the process of changing that started today, and I should have my new (2nd hand 2021 Nissan xtrail) on Tuesday – you’ve heard of comfort food, but a comfort car?
How are you feeling in yourself?
I am annoyed by this.
I recognise that in the annoyance there is a tinge “not fair”, “why me” etc. but none of it will help. The whole thing is a distraction from what is essentially a great and privileged life, full of fun, love and stuff. Obviously I wish this wasn’t happening, but it is. So I am going to do my best to not have it spoil things.
The hospital system has been more stressful than the issue itself, so if I can, I will abandon it for private treatment…hang the expense.
If you know me at all you know I use humour to cope with anything and everything and there is no reason why this should be any different. So expect some dark attempts at being funny.
How can I help?
This is likely the most common question and you can’t know how much I appreciate it.
You can’t help, really. If there is some way you can, I promise I will ask.
I am not sick. I am doing all the things I love doing (and some I don’t) just like usual. There is just this annoying issue that has to be dealt with that is likely to get in the way over the next months.
If you do want to help, send love. I have a lot of beautiful family and friends and I have already been on the receiving end of loads of love. Keep it coming.
Thoughts and prayers? If you think it will help, go for it. But watch out for my black humour ;o)