A Prostate Cancer Journey

  In the Doghouse, Again.  Graham Smith. Creative Commons License, Some Rights Reserved. A simple cautionary tale for today. We were doing laundry and my wife asked if I had checked for any leftover pads in my underwear. No need to check - I always take the pads out & bin them before I drop the clothes in the laundry basket. Simples.  You can guess where this is going.  It's like a tissue in a pocket or a missed sanitary pad but much much worse. The outer of the pad stays whole but the absorbent part of incontinence pads breaks down into a million or more small flecks of white. The outer looks like the insides have been sucked out of it, and every item of clothing that isn't a synthetic material gets covered in a white fuzz that's almost impossible to get off the clothes. Even a defuzzing brush (or whatever the fancy name is - delint?) can only clean one t-shirt without needing to be cleaned itself.  Predictably most of my stuff is quick drying synthetic, mo...

Who needs pads when you're in the ocean? It's easy to be smug about continence when you're staying at home and always within 2 mins walk of a toilet. But it gets a lot scarier when you venture into the outside world with only an intermittently behaving pelvic floor and an absorbent pad between you and public humiliation. This weekend I expanded my horizons with a supermarket shopping trip on Saturday and a trip to the beach on Sunday.  No pics of the shopping trip because it was just a Woolworths visit but that was my first long public expedition since the surgery. I know my toilet patterns from previous recordings so I waited until I had gone twice after breakfast, strapped in a number 3 pad, girded my loins (literally) and went for it. I also knew where the toilets were in the shopping centre so plan B was to abandon the trolley mid-shop if required. That wasn't necessary and although I was scared for most of the trip I completed the shop with no significant issues. I...

I'm going to start combining days as there's not much different going on. Improvements are gradual but  noticeable and I'm starting to transition back to 'regular' life.  I'm walking around a km every morning, including a small hill that gets me breathing hard. I'm doing a few hours of work every day. I've finding ways to chunk out the household chores so I can help around the house without exceeding a 2-3kg weight limit. I've restricted bladder-irritants to only 2 cups of coffee in the morning and sometimes some AF beers at night. But my home-brewed AF beers are very low carbonation anyway. No sparkling water, but the soda stream adverts taunt me throughout the day.  I think that's having a positive effect on the number of toilet visits but I haven't backed that up with measurements yet - will do that every few days but it's too restrictive to try and do that every day. I'm still on the stool softeners and will probably be so for the...

An exciting day today - a trip into town to see the physio and then we're having lunch out as well. First time for a long time!  The physio visit was very illuminating. After checking my pelvic floor action with an ultrasound it looks like I am overdoing it with my clench, which is probably tiring out the pelvic floor muscle. This is probably because I am doing whatever I can do prevent any leakage, whereas in reality I should be trying to exert the minimum work required to prevent leakage. Getting the balance right could lead to more leakage in the short term but will help manage control in the longer term. I understand that on a theoretical level but it's a hard one to implement. Now is the time to be trying it though as I am generally at home alone and have plentiful pads that I can change as required.  Another reason for the small volumes could be due to bladder irritation. The muscles around the bladder detect movement in the bladder and send signals to the brain when it...

I'm seeing the prostate physio tomorrow and I'm getting frustrated with the need to constantly go to the loo so I'm taking some measurements today - the fun we have eh? So far (mid-day-ish) I'm needing to urinate around once per hour and I'm putting out around 200ml per trip. The adult bladder holds anywhere between 600 - 800ml (Dr Google varies) so I'm obviously way down on what should be being held. But - apparently the urge to go is triggered at around 200 - 300ml, so it looks like there could be two things happening -  A bladder that isn't able to stretch to hold the full capacity (maybe a side effect of the surgery or just how my bladder works)  An over-active nervous system which takes the mildest need to go as an urgent signal to empty the bladder So that's one fun thing to bring up in the conversation tomorrow.  Apart from that I emailed a client today to let them know I am available for  a couple of hours of work if required. I had one query but...

Spoiler alert - I chose the hammock  As I wrote in yesterday's entry I feel a lot better today. The pelvic floor pain has dissipated, I only got up twice during the night (ie back to normality) and I feel a lot more like myself today. Still constipated which I think is the root of a lot of the issues so I'm upping my stool softeners today.  I have the chance of joining my wife on a shopping trip today which would probably be good for my penned-in feelings of agoraphobia, but I'm not sure I can bring myself to go. I might take up her offer of a trip up to the forest later today where I can see people from a distance but not have to interact, or I may attempt the hammock in the back garden. I also plan to start playing with the yoyo & kendama a bit more to get some non-screen based interactions with the world & re-introduce that body / brain interface.  I need less screen time and more real world time.  Speaking of which - she's just left so time to tackle the ...

Probably the worst day since the catheter was removed in fact. I felt a little light headed and feverish with no real appetite, although my temperature & blood pressure were both fine. My wounds didn't hurt much but my belly skin was very sensitive. And I was having to go to the loo every 30-45 minutes but only urinating a small amount each time. This left me in a bad tempered funk all day, I just lay on the day bed watching TV or sat outside reading horror short stories. This was the first time I've considered reaching out to the doctor since the catheter was removed.     Looking back the urinary issues could be due to a number of different reasons -  Ongoing constipation  A dislodged stitch or scab partially blocking the urethra - this is the time when stitches start to dissolve and I think I saw one in the loo the other night.   An overly active pelvic floor - it has been cramping a bit   A tired / battered bladder not having the elast...

 Bit of a tough night last night - needed to get up half a dozen times to go to the loo. And I had some very weird dreams - it felt like I had to complete tasks or click on certain buttons before I could act. 'Ah, I can't fully empty my bladder until I have partially emptied 5 times' or something similar, along with 'click on the left shoulder button to empty to the right'. A combination of two mugs of mugwort tea (which can promote dreaming) before bed and too much gaming.  Also woke up with a bad headache and mild constipation, so have taken more stool softener but am holding off on the paracetamol for now.  I had planned to start work today but my wife has wisely suggested I leave it until Monday. Gives me a few more days to recover, stops me dwelling on work stuff over the weekend and also makes more sense as most people are just trying to tie up their week on a Friday so why introduce an unexpected element? I'm also enjoying the chilled and mildly bored exi...

Two weeks ago today I had just arrived at the hospital to check in for my prostatectomy. Seems like along time ago now bit I thought it would be a good time for a quick recap.  The major thing I'm feeling is an immense sense of gratitude. So far I haven't been too badly affected by the procedure and I am very grateful for the factors that have affected that -  A good surgeon that I had access to and that I could afford A good hospital that delivered excellent aftercare  Catching the cancer early so it could be removed entirely within the prostate  Catching the cancer when I was young enough to be resilient in recovery  Being fit enough to aid in recovery  Being blessed with a wife who worked with me through the whole process  Being backed up by mates and colleagues The first week with the catheter in was uncomfortable and at times scary, but most of the time I was just recuperating and had no pressure to do anything but rest. Looking back those days se...

More of the same - gradual improvements to the pain and to the mobility. The pain moves around my abdomen and between wound sites and gets a little worse if I'm standing or walking for too long.  I've been a bit more mentally active and that has been gratifying, but it is surprising how tired I get after a couple of hours of poking at laptops & phones. Continence is going well although the frequent toilet breaks are getting irritating. I've managed a couple of short walks and I don't feel like I'm 'shuffling' any more, but I am a bit limited in stride length due to the stitching in my abdomen pulling.

I'm trying to get a bit more mentally active now so the plan is to do things in the morning and then give the afternoons up to computer games or TV. I've spent the last hour sitting up at a table using a laptop and I can feel the pressure on my waist and groin so will need to have a lie down soon but think it's going OK so far!  I also went for a brief walk this morning. I had said to my wife that I would get to a set point and then return regardless of how good I felt, but when I got there I kept going with the aim of doing my regular loop. But then I made myself stop and turn back - I'm well ahead of where I thought I'd be and I've had some pain, so time to be sensible and let myself heal. Not sure of this is wise or weak!  

Pads and pants The two most common longer term side effects of a prostatectomy are incontinence and erectile disfunction. And incontinence is the one you'll need to tackle first - to be honest at this point in my recovery even if I was getting erect I wouldn't be in a position to do anything with it anyway! The initial way to deal with incontinence is the use of absorbent pads. We were issued a 'party pack' of different sized pads by the prostate nurse which I've been using during the week and there are a few different types -  'Shields', which stick on your underwear but just absorb minor dribbles  Pads which also stick on your underwear but which have different levels of absorbency. The amount of liquid that can be absorbed is stated on one of the brands but not the other - it runs from level 1 (275ml) through to level 3 (710 ml). These need to be worn with briefs style underwear, they won't seal with boxers. Pockets, which are a subset of pads but whe...

OK I made have overdone it on day 9. I woke up on day 10 with what felt like a swelling pain in the far left incision in my belly and felt very tender. So I spent most of the day laying down and taking it easy whilst my wife did all the housework and garden work around me. I felt terrible but had no real option.  My mental state is getting better though - I feel more alert and more able to focus so I spent the morning playing around with my new note-taking e-tablet and figuring out what it could and couldn't do. I'm also using it to keep a log whenever I empty my bladder to try and get a handle on how that is all going and if it is improving. I've also restarted the pelvic floor exercises - possibly a little too much as I'm starting to cramp up down there. But still generally happy with how it's going - the only leakage is either when I'm deliberately holding off, just before I sit down on the loo or after I finish.    The highlight of today was being focused en...

Saturday today and I woke up just before 6am panicking that I was leaking. I wasn't but my bladder was nicely full and satisfying to empty - the volume being voided is definitely increasing over time. I went back to bed but couldn't really sleep and I wanted to let my wife sleep in (poor thing is exhausted from looking after me) so I got up and made coffee. After catching up with the news I went for a short walk and extended it to around the block (around a km), which is my usual short morning meditative walk and something I had down as a stretch goal for next weekend. I was walking slowly and carefully and started to feel a bit woozy in the last few hundred metres but very happy with that. It was nice to have a lie down afterwards though. The coffee also triggered off some bowel movements that suggest I need to cut back on the stool softeners. In fact that was harder to manage than my bladder!  By the time my wife got up I'd read the internet and was starting to feel a lit...

Corny I know Another quiet day. I was fairly active during the morning but then settled in to watch more Mayans. It was weird not being hooked up to the catheter and instead needing to watch my bladder, and the temptation was to reduce the fluids to reduce the need to go to the loo. This is of course not recommended. I did a bit of reading around the whole continence issue and it is something I'm going to need to tackle head on. I have an advantage with a strong pelvic floor but I still need to practice locking it at the appropriate times. This is apparently called 'The knack' and should eventually become second nature. I'm also keeping a log of when I go to the loo and what triggered it in the hope of seeing improvements. I wore absorbent pants for most of the day but switched to a 'penis pocket' at around 4pm as I was feeling a bit funky.      I'm also still wondering how much of my general apathy is surgery recovery and how much stems from not drinking! B...

Time to lose the pipework! I was very happy to have got to this day, but also a little scared as it is essentially the end of the immediate recovery and the start of the longer slog.  It was a big day. We had to drive into the city to get to the hospital and then sit in the waiting room until they were ready to see us, which was by far the longest I've sat up since the operation was first done. After about 30 mins of waiting we were taken to the rehab ward and assigned a bed, and I was very grateful to lie down when we got there.   The rehab ward was very chaotic and very noisy. The nurse assigned to me was lovely and extremely professional but as always seems to be the case, was trying to manage three or four jobs simultaneously. So it took a bit of time from first being seen to actually having the catheter pulled. The removal of the tube itself was pretty simple and a painless but very intense sensation. I wish I had seen the end but my eyes had closed involuntarily! I...

Quite a sore one today. It feels like I'm getting cramping or gas pains in my lower abdomen and I needed a decent lie down after breakfast instead of just fancying one. The abdomen wounds are bulging unnervingly too.  I have had a bowel movement a day but can still feel the back pains that suggest I'm constipated so I've upped the stool softeners, to little effect so far.  I did have a google and this is not uncommon. Recovery is not a smooth curve and that different things will hurt at different times, but today is not a great day..... 

May be worth skipping this one if you have a weak stomach I mentioned constipation earlier and I think it's probably the worse element of post-surgery recovery. The region around your bowel takes a fair battering in the operation itself and then the painkillers conspire to back you up. I get stress related constipation as well so had not passed anything significant on the day of the surgery itself despite the two microlax (localised enemas) taken that morning.  The documentation you are given tells you to try not to be constipated but not to strain, and it's hard to square that circle. You can feel the stool inside when you sit on the toilet seat, but it refuses to shift even if you adopt the suggested feet up position. Sometimes there is a feeling of movement but then only a fetid fart is pushed out, or a faint gurgle and the feel of an internal rearrangement. And as you sit there you are in some part straining despite your best efforts, so you are dribbling urine from your pe...

Time to empty - anyone fancy a VB?  One of the joys of prostatectomy recovery is the use of a catheter. This isn't as bad as you first think but there are some hints and tips that may help anyone who has recently been plumbed up with one. When you initially wake up the catheter tube is already in and is connected to a fixed bag on the side of the bed. So needless to say do not try to get up! Despite the catheter (which allows urine to flow automatically into the bag)  I still felt the need to urinate when I woke up. This is apparently normal because the brain interprets any kind of pain signal from that region in the same way and so prompts you to go to the loo. Again do not get up! Just relax. If there is any leakage someone else will take care of it.  When they transfer you to a leg bag (which straps onto your thigh) then have a think about which side you want. It's best to have the bag on the same side of the bed that you get into - so if you sleep on the right hand si...

Humour is key. And tea. Day 5 was another exhausting day. I was by myself again and the plan to start doing things like this blog didn't come to fruition. I did a few chores around the house and then lay down until lunch feeling tired and demotivated. This may be in part due to the lack of drinking - I am a fairly regular drinker but do dry Jan every year, and I know from previous years that I tend to get listless at around the end of the first week through to the start of the third. I also had some worries around the catheter as it was starting to smell bad. I have everything a decent clean and that seemed to help, but with only two more days to go before removal I don't want to have to go back in and have it reviewed. The bag is still filling and the liquid is still clear so I'm not too worried about it, but it's easy to get panicked. The good news was that in the late afternoon I felt a surge of energy and was able to get up and move around without too much pain. I e...

Apologies for the belly shots Day 4 for me was a Monday and my wife was back at work. So I pretty much lay on my daybed all day watching Mayans. I had no real idea what was going on or why these people were beating each other up but it kept me mildly focussed and relaxed. To be honest I think I needed the time by myself to fully mentally relax. Funnily enough after watching close to 8 hrs of motorbikes, guns, hookers, fast cars, drugs and alcohol the thing I was most envious of was the main character doing burpees in the morning. I would love to be able to do that right now!  The wounds were really starting to stiffen up as they healed and my stomach felt concave and like I had done a couple of hundred sit-ups the day before. Sadly the mirror shows that I'm still a fat bastard. I also tried to read but although I felt comfortable lying down, my head swam a bit whenever I got up and close focus was tricky. I also did a few bits & bobs around the house and probably overextended m...

Tea, water and stool softeners. Truly I am spoilt. The fight starts here. Constipation will be starting to cause you grief, the catheter will start playing up and the wounds will start to stiffen as they stitch themselves together. All you can do is deal with the issues as they crop up as best you can, relax and et your body do its thing. This was the only day so far where I got panicky and scared, and was also the day where I realised there was still a long way to go. I got as far as ringing the panic line to talk to the doctor about a leaking catheter, but apparently a small amount of leakage is not uncommon and can be managed with pads. The important thing is that the leg bag is filling up.  Also take some time in day 3 to think about your partner / carer. Someone has been worrying about you & looking after you for the last few days. They probably spent most of your surgery day pacing around waiting for a call. They spent the next day siting at your bedside trying to make co...

Day bed / Recovery nest Everything you need to get through the day   A lot of people will go home on day 2 - I was lucky enough to wake up at home on day 2, and it was glorious to be able to walk into the garden with a real coffee in a real mug and watch the birds. There were some initial struggles with the catheter & leg bag that I'll cover off in a dedicated post but it is surprisingly easy to live with once you get used to it.   The big thing about day 2 is that you get cocky. You're home, it's done, you're walking around and although you know you need to be careful you know that you COULD carry that watering can or hang that washing if you want, you're just choosing not to.  But - the sad reality is that you can't. You're in a bit of a honeymoon period. The wounds haven't started to properly stitch themselves together. The constipation hasn't built up. You're still dopey from the general anaeasthetic, on a plentiful supply of opiates and ...

 I woke up on Day 1 still hooked up to the machines, but by midday a nurse stopped by to swap the catheter bag for a leg bag (strapped to my thigh) which meant I could move around more freely. I was fairly mobile and able to take fluids by mouth so they were soon able to free up my legs and take out the drip. Standing up was a joy! A physio also stopped by to give me some advice on how to move around and we took a brief tour of the hospital ward. I think my balance and riding helped a lot as she was surprised at how mobile I was.  After that it was a bit of a waiting game. The doctor had said that he would drop by and assess whether I could be discharged and so my wife stuck around - and we waited and waited. Well, I also dozed a fair bit but that may have been due to the opiates. Eventually at around 6.30pm the doctor appeared and suggested that I could go home if I wanted, which was awesome but also a little chaotic. After an hour or so we had completed all the paperwork, I ...

Well surgery day was pretty much as expected. A lot of waiting around in a variety of different rooms. Laying in the final waiting room listening to the techs trying to get the robot to work despite the error tones, and eventually fixing it by turning it off and on again. Finally getting wheeled into what was a very impressive surgery room with a lot of high-tech equipment & competent looking people around me. And then a blank space before waking up in a bed surrounded by machines going bleep. The doctor was apparently there to check that I was OK and reassure me that all went well, apart from a 'bronchial episode' that I need to find out more about but may explain my sore throat. My wife was also there and worried sick so it was lovely to be able to hold her hand, and also to post an instagram post from my hospital bed (because if it ain't on the socials did it ever happen?). My wife left at around 9pm and I dozed until around midnight when a room mate was wheeled in i...

Well the wait has begun. Nil by mouth from 7am onwards and a hospital admission at 11am means an uncomfortable few hours, especially in summer Qld heat. If you stand in the shower with your mouth open does it count as drinking? Just asking for a friend. Unfortunately there was a bit of a fuss yesterday around payment options. I am having this done at a private hospital because I was told that it was the only way to guarantee the surgeon that I want. My insurance doesn't cover it but such is life - I was happy to pay the fees to get the best care. The hospital only found this out & delivered the estimate to me yesterday at lunchtime, despite me booking this in September, and wanted the not insignificant payment up front. Luckily we were able to action that with bank transfers but we're still relying on either the funds transferring overnight & being traceable on the hospital records or the admin staff being happy with screenshots of the transfer. Obviously this lead to a...

The famous philosopher Mike Tyson once said that 'everyone has a plan until they get punched in the face'. It's important to separate the plan from actual events, recognise that things will not always go as you think they will and that plans will always need to change. But a good plan is always a good starting point. I'm going in for my Prostatectomy in two days and so here is my pre-surgery plan. Be interesting to see how it actually turns out... Pre-surgery. I've cleared out my work responsibilities and am basically sitting around waiting for the big day. It's a little frustrating because I need to be careful about picking up any injuries which rules out going mountain biking, and I need to be careful about picking up COVID which rules out going out much to busy places. I am also taking an antibiotic to counter a suspected urinary tract infection so I can't drink. (probably a good thing because I have been overdoing it recently but it would still be a funn...