Ray's Story

This is written as a word.doc, and comprises of 6 a4 pages, all laid out beautifully. I don't know if this will work, or maintain its structure in this format, Get yourself a nice cup of Earl Grey and some Digestives, and off we jolly well go.... Post-Prostatectomy: Me and The Shar-Pei…! ******************************** **** VERY IMPORTANT **** Everything below was, and is, ONLY particular to me and my physiology. You undoubtedly will follow a different script – but with luck, still have as much ‘fun’…! These notes are based on my experience, highlighting things or areas which may be handy to know, many of which, nobody told me about...! ******************************** • I was discharged on Christmas Eve, which left me high n’ dry, with people on holiday etc – not advised...!!!!!, • Not particularly easy to live at home on your own after leaving hospital - EVERYTHING is difficult, tiring, and sore. Having someone to help you (as happened in hospital) is definitely a 'must have' - it may help speed recovery. Being on your own, even opening / closing the curtains, making a cup of tea, getting in and out of bed, is an effort for the first month or so. I wouldn’t advocate this operation be undertaken if you live on your own – if you can avoid it! You are very vulnerable, ‘doing’ everything yourself, with nobody available to pick you up if you fall, etc…! If on your own, give some thought to some sort of post-operative care package. This could simply be someone coming in every day or two, to check up on you, maybe make a nice cuppa’ and have a chat. • Before leaving hospital, the Urology staff noted that: boxes of ?? ‘…will arrive from...but don't worry, it’s all written down for you.' Once home however, I was fully occupied with ‘managing’ my recuperation, and thoughts of ‘boxes’ went out the window. Once I had settled into a routine after a few weeks, I had no idea what or where, just new it / 'they' would arrive in a couple of months. The answer would be to have information written down a la’ Discharge Notes… hence write everything down, albeit, your Good Lady may be with you, so will likely remember what and when…! • For the first few weeks, use a walking stick in the house - tripping and falling, doesn't bear thinking about...! • Keep a diary and note everything that happens, both physically and mentally. I noted things like tea / coffee… the time for water-stops… time of last fluid prior to lights out… duration of sleep… miles walked… pelvic floor exercises… essentially anything different, ie spicy food… beer, etc. All this is handy in case the medical team ask pertinent questions, but also, it is good to see ‘your’ progress. • Make sure you DO NOT stress your already traumatised innards. Remember, put in the downtime now, and it will benefit you over the longer term. Things you will need, immediately you arrive home: • Incontinence pants – Ah, this is what turns up ‘after a couple of months’…, however until then, you need your own eg ‘TENA for Men’, at the very least you need some form of Maternity Pads, these are a MUST...!!! In my case, I experienced ‘bypass’, so required pads / pants right from the start. • Toilet [training…!] requires plenty of time to get organised, but you will likely need some sort of absorbent floor mat for the inevitable spills…! My daughter gave me Puppy Pads (2ft Sq.), which are used when training puppies about ‘when and where to let go’. Without this, I was using hand towels, which added unnecessarily, to my domestic duties - all of which added unnecessary stress to the wounds and recovery...!!! There is an equivalent baby changing sheet, which I migrated to, and years later – I am still using. • Plenty of Toilet Rolls ie double your usual weekly shop...!!! • Plenty of black bags - you produce a lot of rubbish: pads, pants, puppy pads etc...! • Mattress protector. Better to have, and not need - than need and not have - a mental health area...! I never had a need for this, but we are all different…! • Sitting watching TV became more comfortable when I got an NHS-style upright seat, from eBay. • Walking outdoors, use a walking pole. • Picker-Upper Grab stick, very handy eg, dropped socks, etc, etc. And so it continues… • Change Leg bag - 3 days max due to staining, leakage, and possible smell, Empty leg bag often, I found that having a nap in the afternoon, can produce a VERY full leg-bag - AND with leakage...!! • Ensure leg-bag has the 'long tube' [not the short one] for connecting to the Catheter. It places the bag below the knee, making emptying slightly safer...!! • Catheter night bags - new each night, preferably with a valve, either Lever, or Plunger for ease of emptying, not the basic design with a simple ‘plug’ – messy...!!!!! • Although you will receive a plastic bed frame to hold the ‘night bag’, I didn’t think that was the best idea, so placed the night bag into a bucket on the floor ie the lowest point and it WILL catch any 'leakage’, whereas the bed frame...!' • Very swollen tummy – 5mths pregnancy size - from op gas, which lasted 10 days. • Self-injection of blood thinning drug for 10 days post-op... a bit scary...! • Being organised is the key eg: if you have a particular way or routine behind washing and dressing, you will automatically try and do the same post-op. Hence, when getting up in the morning - have EVERYTHING ready and importantly, IN THE CORRECT ORDER ie clothes, wipes, pads, towels, etc, etc. This makes things so much easier - nothing worse than going from step A to J, just to find that things have to be removed, because you forgot step F – all adding to your discomfort...!!!! • I found that removing all clothes for a toilet stop was required in the early stages. This arose due to the body not functioning according to plan…! Remember 'The Numskulls' in the Beezer comic; well they decided to have some fun at my expense. Picture the scene: I was getting dressed after passing water, rather pleased I had managed without spillage, then, 'The Numskulls' decided to open the ‘valve’… bar-stewards...!?!?!?! After a couple of 'incidents', I ensured my clothes were removed from the equation. This aspect forced me to plan any excursion, noting access to Disability Toilet facilities - these are bigger, hence more room for a dis-robe. This also means you need to carry hooks for the toilet door, to hang all your ’stuff’ upon. In the early days, my excursions always required a backpack – which needed to be hung up. • Worrying swelling of 'undercarriage' for 2 - 3 weeks after leaving hospital, and in my case, lasted well beyond the Catheter removal date...!!! I had to go to hospital to get this checked. The Dr said: ‘Is it sore here…?’ After he had scrapped me off the ceiling, I said: ‘Yes, with a capital 'F'…!’ • A wee mental image about the ‘undercarriage’. The bladder is joined by the urethra to the penis. The Prostate, which grows round the urethra, prevents independent removal, so a section of the urethra is inevitably removed as well. The seminal vesicles also come out – they are for… well the clue is in the name! With me so far, okay, here we go…! The removed section (organs and urethra) leaves a gap in your plumbing, which has to be addressed. This is done by grabbing the urethra and pulling it up to the bladder, forming a new connection. The penile skin is untouched, so when the urethra is hoicked up, the tip of the penis moves up the same distance, however, the penile skin, untouched by all the fun n’ games, remains the same length / quantity you had pre-op’n. The result is the penis is surrounded by ‘excess’ scrunched up penile skin, just like a Shar-Pei dog…! This becomes organised and sorts itself out in time, but nevertheless, is a bit strange at first. A couple of years down the road, I have no issue with this – less than, hilarious aspect…! • My new ‘joint’, ‘twixt Bladder and Urethra did not seal off properly, hence my Catheter was in for 9 weeks. This resulted in 3 trips to hospital for bladder filling and inspection. Not painful, but quite uncomfortable...! Catheter Pros: you never have to worry about ‘wetting’ yourself – day or night. Catheter Cons: the longer it’s in, the more time you have to think about the potential pain when it is removed. Surely, it’ll be painful – won’t it…? Also, with your body no longer reminding you to go to the toilet, what will happen when the catheter is removed – will I flood the house or at least ruin the mattress…! • Removal of the Catheter, was a very worrying thought, however thankfully, it was easy ie 1-sec of discomfort - bingo, Yabba, Dabba, Doooo... ! • The other area of concern when removing 'that tube’, was the thought that my system hadn't required to remind me to empty my bladder, as it had done confidently for the previous 60yrs; will I simply wet the bed now…? Helpfully, we have been designed with a built-in safety feature; a syndrome called 'Nocturia', which realises the bladder is full, and 'notifies' you to get up and pass water. I thought it would just be my luck this syndrome would be another ‘side-effect’, so I added a 2nd mattress protector, closed my eyes, and hoped for the best. I was woken up by Mr Nocturia, and off I went to the toilet. This has worked ever since. Fantastic. What a relief, in both senses of the word…! • Histopathology report on removed Prostate = 6 weeks. This will give the most accurate reading of your Cancer stage, eg prior to op'n, I was 'T2c', after the op’n I was 'T3a'. • Pre-Op'n; Flow Test = 58. Not sure if this was gals per min or miles per hour? Post Catheter; Flow = 2...!!! 6 months post-op; Flow = 22; considered more than acceptable for my age and op'n trauma. Slight hiccup with initial flow 6-7 months post-op ie no-flow in the first 2secs. This led to a trip to hospital, for ‘a camera up the plumbing’. The idea was less than appealing, but the result confirmed there was no blockage, and everything was normal. The ‘no-flow’ was likely either a mental thing, or a physical aspect. I found the cure was to adopt a more upright stance opposed to sitting [the physical aspect], this produced immediate results with good, strong flow – helping the mental aspect. • 4 months before being able to walk more than 10mls a week. 6 months before reaching 20+mls in a week. • I would suggest, based on my experience, a return to work is unlikely within 3 months. However, everyone is built slightly differently, so some will get back to work earlier than others – just be careful of over-exertion eg getting in/out of the car, climbing stairs, toilet breaks, etc. • No longer allowed to give blood – ever again…! Quite a shock and a fair blow, given I had started in the 70’s, and was only 2 transfusions short of my gold award...! • Remember, the operation is classed as a major operation [words from my surgeon], which will become apparent after you get home, and, over the next few months. • It is important not to lose sight of your position in a further 12 months, and ensure you don’t compromise that, by ‘trying’ something too early. It all takes time, but you will get better each week. • All the above sounds quite worrying / involved / scary, however, the lads at the PC group at Maggie’s, who underwent Hormone Therapy, Radio Therapy, Brachy Therapy, ALL had issues…! It appears you don’t get off easily. No option is better than t’other in terms of side effects. So much for the easy bit, now the BIG DEALS… • The operation, called a 'Robot-assisted Radical Prostatectomy', was completed by a robot called Da Vinci, or was it Bob, I can’t remember? Nevertheless, the robot is NOT an autonomous ‘being’, the ‘arms’ are completely controlled by the surgeon, albeit sitting away from the action, and not even looking in your direction. One of the robot tools, is a camera, which feeds the surgeon a beautiful view of your innards, in 3D HD colour. Amazing. You leave hospital, the proud owner of 5 incisions: 4x the size of the dia of your little finger, and 1x about 3” long, to remove the offending organs. Da Vinci and his tiny incisions are absolutely remarkable. Within 6 months or so, although I knew where they were – I couldn’t see them very easily. 2 years down the road, and they have all but disappeared. Quite incredible. YouTube has some excellent videos but be careful if you are squeamish…! I had my Gall Bladder removed 40 years back, resulting in a 9” abdominal scar for all to see. The Da Vinci robot is nothing short of magic. • Don’t worry about sex – there will be nowt forever (!), or at least for some considerable time…! This may / will impact your Good Lady too…!!! There are contraptions and gadgets, lotions, and potions to help, however, the words: ‘passion’ and ‘killer’ spring readily to mind, and, by the time you are wired up, pumped up and ready to go – your partner will be fast asleep…! • Mental health DOES take a severe beating…! Remember your recovery will be dealt with by both you AND your wife - so the mental health aspect may well be an issue for her, if not you...!!! My mental health was well and truly ‘fooked’, due to the recovery trauma, but also [about 9 months post-op], due to the creeping realisation over the HUGE life-changing decision I had made – a la’, ‘No Sex Please, We’re British’. This quickly morphed into realisation no2, MY decision may well have confined me to being on my own, for the rest of my life…! This, on the face of it, may sound daft, stupid, even vain, and maybe I am the only one in this position – but I doubt it…! All through these notes there is mention of ‘mental health’, which I believe plays a significant part in your recovery, but is rarely, if ever, mentioned. Ensure you get help if and when required. DO NOT leave it to fester, and remember, there are 2 of you going through recovery…! In my case, I only had me to deal with, so every decision I made only impacted me, and, as far as I was concerned, was always the correct one – I thought…! However, I had nobody to speak to or use as a sounding board, hence my brain had too much time to get all screwed up. That's All Folks…!