Reposted from the treatment thread - realised this is the better place for this missive...
I’ve been buoyed by the diaries of other forum members as they recorded their experiences so I thought I’d chuck in my two’penny worth…
March: To be fair my wife had been saying I should get a PSA test and I’d actually booked on but then you know…covid happened and so everything stopped – importantly I had no symptoms so I wasn’t fussed. Then following on from an old mates funeral in March of this year (he didn’t have it) two more old did and said “just get the bloody test done” So I did…
April: PSA results back called into see GP – hmm that can’t be good thinks I – sure enough GP says it’s like this your numbers are in the we need to look further range, probably nothing but to be on the safe side we’ll whack over for an MRI…
18 May: off I toddle for the MRI which was a noisy slightly claustrophobic hour of my life I’ll never get back. Naturally, I asked the radiographer fella what he reckoned (not his first rodeo I figured he'll know what he’s seen) Nope says he you’ll have to wait for the Docs to talk to you I’m not allowed – Go on give us a clue says I. and he replies “I wouldn’t think about it too much” what the what does that mean I think but being of a sunny disposition I decide to take a positive view…
Couple of weeks later get the call we’d like you to go for a biopsy….bo%%Ks… in Worthing.
28 June: Now the biopsy… there’s a story if I describe it it sounds like the script for a rather racy porno…You’ll be in a room with three women…yes….and you won’t have anything on from the waist down….yes yes… and you’ll be in a sort of legs up postion while one of them shoves things up yer bum….crikey!
But even though the ladies in question were charming – its sounds like it might be fun….it wasn’t…Anyway at the end the Doc says we’ll book you an appointment at St Richards “to discuss the next steps”….Bugger thinks I there ARE next steps because this isn’t her first dance and she knows what she’s looking at…ah well don’t sweat the stuff you can’t change I think as I do a bizarre cross between a mince and waddle across the car park.
Following week: Get a call from St Dick’s would I be available for a telephone consultation on Friday at 1100 to discuss the results of my biopsy? "Ripper!" thinks I they won’t be giving you the grim news over the phone – probably be more of a watch and wait type of deal…excellent good to go…
See? There’s that glass half full mentality doing its thing again..
Come the appointed morning I’m on the road enroute to do some steely eyed aviating at my place of work when my mobile starts ringing see it’s St Dick’s pull over take the call…seems there was a bit of an up cock and it’s not a telecon but face to face….eewwwe that’s not good thinks I…and it wasn’t. I think I sort of prepped my self mentally in the couple of hours before the appointment but conversely didn't have so much time that the fear/worry got out of hand. Additionally, by nature and training I'm not much of a panic-er...Subscribing to the mantra "never panic early".
For the keen on numbers types - PSA 6, Gleeson 4+3, 14 of 18 cores wrong 'uns and T3aN0
Next thing off for the bone scan - which I imagined would be much like the MRI but it wasn't...it was an all together more pleasant not nearly as claustrophobic or noisy - I actually nodded off a couple of times...
A hop skip and and jump later and it comes down to decision time let the robots at me or go the radio route…on balance and coming down to it I decided to go the surgical route – If you want to know why ask me but sticking to the time line
Aug 24 Turns out to be D day or P day I suppose (though you call it “you ain’t going for a p for 10 days day” )
Any road up I arrive at the appointed hour (actually before the appointed hour but that’s an Army upbringing for you) at ellective surgery unit at Guildford…or as viewed from the outside collection of tin huts tacked on the side of the Royal Surrey. Now I’d followed the pre joining routine and since my booking in time was to be before 1200 but not by much 1115 I’d been on the nil by mouth regime since before 0600.
After a short wait mostly due to snag with the IT system I was ushered into a cubicle no bed just a plastic chair to have the whole, BP, temp and Covid swab – it’s important to note that I had to do LFTs at P-3 and the morning of P day – top tip as well as getting the notification of a reported result thing sent to your phone take a pic as well as back up proof. They won’t let you in without it..
Anyway back to the cubicle as well as doing the checks I was told to get my kit off and get into the gown and anti DVT stockings they also give you some anti slip socks to whack over your feet – use them. Now here’s a question about gowns why do they not have ones bigh enough I’m reasonably tall 6’2 and could do with dropping a few pounds but I’m by no means a house you wouldn’t think it’d be a work of genius to have one that at least sort of fitted…bare arse plastic chair…not a good combo for a start, later enroute to the theatre I had to do my best Prince Phillip hands behind the back walk hold everything together to avoid mooning all and sundry…
Anyway back to the cubicle I was first visited by one of the surgeons who gave the bit that if it was on on an advert…would be the small print/fast talking part. Annnnnd sign here…to be honest there was nothing in that spiel I hadn’t heard before – though critically the one piece of information I did glean was that I would be in for at least one night…there was some confusion about that in our house since the Urology Consultant had said in for one night but the pre-assessment nurse ( at P day -7) had said no out the same day.
Next came the anaesthetist – aside from having very pretty eyes also asked if I would be interested in getting pain relief via a spinal injection – basically an epidural type of deal – she warned me that it was a little hurty when the local was done before the big one but in reality when it came to it the worst bit of it was the alcohol scrub before hand which was bloody freezing. She told me the purpose was that with this form of anesthetisia they could reduce the amount of opiates used in the knock you out mixture. And overall you’d feel better – she was right... if you are offered this option go for it.
The appointed hour of doom came and off I was marched in the aforementioned Price Phillip walk…to be honest this was the first time I really had thoughts of "oh f@$k this stuff is getting all a bit real" I think that beforehand I'd been able to displace it (the fact my wife is presently awaiting surgery for a brain tumour (thankfully benign) helped be divert my thoughts - to be honest I worry more about her and her process. If you'll just allow a little digression her diagnosis came about two months before mine...basically it's been a shite year health wise.
Anyway back to business, into the theatre drugs in and goodnight Vienna – next thing I know I'm in recovery feeling not too bad.. Foley catheter in to an overboard bag. Mightly relieved to get some water at this point mouth a bit sahara like. It took awhile to get to the ward – discharges seem to take a very long time – I sure this is an area where the NHS wastes tons in resources. Happily during the wait I was also brought a sandwich as well as hot chocolate to drink.
More good news my bay mates turned out to be a good bunch and we chatted amicably for longer than we should have…Sleep was not to be... first up the pain relief started to wain and quite a bit of discomfort set in. In addition, one of my bay mates snored loudly…when I say loudly Concorde at full chat loudly…the thing was in the first snore break two foxes outside decided that was the time to get jiggy with attendant foxes getting jiggy noises – at the time I thought them rather rude and considering my position at that point rather adding insult to injury. Later there was the rain….heavy rain….remember I said they are tin huts…..very loud heavy rain. In summary poor night’s kip.
P Day +1
First big item aside from ordering breakfast was to get introduced to my leg bag – hither to as mentioned earlier all urine dumps were going somewhere overboard. Now a word about the leg bag. The catheter line is secured to a fairly hefty elastic bandage secured by Velcro – the Velcro bit chafes like a b****** so bring with you when you come in something like an old hanky or off cut from a t shirt that you can tuck between the Velcro and your thigh also allow it to flop over the top..it’ll make life a lot more comfortable.
The next exciting bit is getting up and having a wander round – you’ll want to get a t shirt and knickers on for that bit because the Prince Phillip walk will hurt like a b******.
Before you are allowed to go home you’ll have to have your catheter removal lesson/test – you can opt to go into your GP but they seem to think it’ll be a doddle. I gather self removal is something of a new thing but more of that later...
You are then issued with assorted spare leg and night bags as well as absorbent knicker pads for later. As well as your sign off from the surgeon and meds. In my case this was all done by 1230 and I shuffled off home – My wife is not the fastest driver on the planet so it was a long ride home made longer by the discomfort.
P Day +2
First change over from night bag to day operations not ideal but everyday’s a school day. Top tips do the change over somewhere with a tiled floor and use the blue line cap. Had to do one bag empty in the middle of the night but wasn’t sleeping all that well anyway.
Hard to find the balance between a position where there is no catheter annoyance (discomfort too strong a word) and stitch pain….While I’m on that subject keyhole surgery? I’d like to see the size of the bally key! Critical move this day getting up and doing a shuffle round the block not far but you’ve got to keep moving so a bit more each day is the way. I even tried to answer a few emails but to be honest I was knackered quite quickly. Another top tip listen to your body and rest when it tells you. Used the laxative but in reality that element was ops normal from P Day + 2
P Day +3
Sorted out the leg night bag switch if all else fails read the instructions – now a word about showers I wasn’t given any guidance on this and it took awhile and some experimentation but in the end (and after several days) the best solution is to disconnect your leg bag and just let it drip in the shower – people might ewwwwww yuck but this really is the best way. Same thing with big jobs disconnect the lot and poke the hose into the loo. Now doing 3 walks round the block
P Day +4
Pretty much like +3 except I was still in the process of finding the right shower big job solution. Still 3 laps on the walks
P Day +5
Bit like the others except walked all the way to the paper shop bout ¾ mile round trip top tip before setting off on a walk make sure the catheter rig is correctly adjusted and the bag is empty. In the late afternoon I had what appeared to be a few clots in the leg bag followed by some blood but since we were in rose rather than claret I wasn’t too worried and after a little while things reverted to ops normal. It did seem as though the clotty bits blocked things up a bit so took off the leg bag and gave it a flush through – seemed to solve the problem.
P Day +6 - 8
Nothing particularly interesting to report same old same old.
P Day + 9
During the evening it seemed like my catheter blocked somehow first indications were leakage around the pipe and lack of normal volume into the bag. Did some fiddling about with the hose and stood for about 15-20 minutes and everything returned to normal.
P Day +10 (bye bye bag day yaay) I had been instructed before leaving the RSH that I should look to remove the catheter at 0700 on Day 10 – I was wide awake and ready for the off, practically pawing the ground…Here’s what I did:
Step 1: Normal night bag routine except when I was done I whacked it in one of the Abri Bags I was given in my discharge kit.
Step 2: Prepared the syringes (two ballon deflaters and one anesthetic gel) I planned to do the removal while standing in the shower to make any clear up easier.
Step 3: Got into shower – this was good move since quite a bit of the gel sploshed back out.
Step 4: Removed both leg bag straps passed to glamourous assistant to put in Abribag.
Step 5: Applied balloon syringe 1 to the balloon drain port . It filled much quicker and in greater volume than the demo/practice session. Although I did attempt to draw more balloon fluid per the training it clearly wasn’t required.
With a little pull the whole thing came out quite easily there was a strange sensation almost painful but not quite – the surprising thing was how long the hose was. Whole lot plonked in the Abribag. Now getting the big tube holding strap off with slick hands (from the gel) was very difficult – ended up cutting it free I’d recommend undoing it before you get to the gel part.
There were no immediate signs of leaking but pad in knicks to be on the safe side.
P Day + 10 0947 so about two and half hours after removal. First wazz good strong flow rate (way better than pre-op) a few signs of blood/clotty bits in pad but nothing significant – replaced with new pad.
Started pelvic floor exercises from the get go – found that on wazzes 2 & 3 I was able to control and even stop flow which was encouraging. Toward the end of the afternoon replaced pad little sign of cough/sneeze associated leakage.
Around 1130 got a call from the specialist urology nurse who checked up how things had gone with the removal and initial leak performance. She told me they’d be writing to the GP advising them to prepare a Viagra prescription. I also received a notification of the follow up appointment with the histology and so forth 4 Nov – Nurse told me the delay more than likely due to histology reports taking a long time to come through at present.
Things got a bit drippy-er towards the evening which I put down to tiredness so much so that by around 1930 I switched to the man nappy I’d planned to wear at nights. Seemed to control things nicely though not the most comfortable thing to wear. (They were Sainsburys own label so I’m going to hunt down some branded ones today in the hope of improved comfort…
That’s the story so far – I’ll come back at the end of the month with another thrilling update
Edited by member 05 Sep 2022 at 17:18
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