Hi AppleTree
Posting here as your inbox is still showing full :-)
Yes all good thanks although could do with a good BBQ or party. Been keeping things sensible until we have a vaccine. Hope all is good with you guys too and great news you are moving things forward.
London Bridge is a great venue. The private rooms are big with an en suite. Food is very good and staff great, so you are in the best place I think. TV also very good but I also took a Roku media player and plugged it into the back of the Samsung TV with HDMI and connected to free wifi to stream tv/movies of my choice.
Apart from COVID my physical self is pretty much back to normal. I had pelvic discomfort for a few months post off given all the cutting I guess so to be expected. This has settled to the point I don't really give it a second thought.
No problems at night with leakage. Has two bed wetting episodes earlier in the year but only because I had drunk a skinful of wine with a mate. Slight drip or two mid last week as I slept right though for 7hours and bladder full when I woke but aside from those three instances everything is all fine.
During daytime I’ve only ever found I get drips if I have too much beer with a mate. Aside from that been perfectly dry since 5 weeks post op. Pretty much same as pre-op but because you effectively only have one bladder valve now in the pelvic floor just need to not force passing wind too hard or watch it when sneezing sometimes. Any issue usually mitigated by just tensing the pelvic floor muscle so non issue as I do it without thinking. On a day to day basis fine and dry. I have not used pads for ages…. although I did when having bloods for reassurance but didnt need them really as no leaks. I just get very nervous with needles and need to wee a lot before they are done.
No problems at all with penetrative sex. I would say if I'm not tired I get erections same as pre-op. If tired maybe 80-90%. If I take a tadalafil I get erections similar to when I was in my 20's!
The voiding issue I had in May I isolated to taking caffeine in coffee or tea. It was strange as up to that point it wasnt a problem. Solution was to just stop taking coffee/tea and no problems since. I now have hot cocoa and milk for breakfast as a substitute. I will test coffee again at some point but dont miss it that much.
In terms of retzius and perceived risk. I wouldnt worry as the Professor only spares the nerves if neurosafe shows in the live surgical samples sample that there is not spread of cancer near the nerve area. As it happened, I lost one bundle as the prof was being extra cautious to ensure good surgical negative margins.
The blood thinners injections were fine. I hate needles but found them very easy to administer. I didnt enjoy it but barely felt anything and just got it out the way first thing in the morning. On the plus side the needles are the thinnest available. Take the offer of a weeks supply or so from the hospital then top up from your pharmacy. I was lucky as the nurse said you can administer in your stomach or top front of leg(thigh). I didnt fancy injecting my stomach and have an old injury in my left top leg where the nerves are kinda numbed so used that spot but did alternate thigh’s a bit for 28days. Some days didnt feel a thing and other days a slight sting or had to try two spots but overall, much easier than I thought.
I felt great 2 days after the op but important to listen to the clinical advice. Don't carry anything and light duties only! On day 2 I walked about 4km and was on a train for 90mins with my gf who pulled my cabin bag style suitcase.
Two weeks after the op I got a bus into town and train/tube into London bridge so about 2hrs each way. Totally fine. Key points are just dont carry any significant weight. Walking around with a very light day bag backpack should be fine as I took pads and a bottle of water. Flight should be fine but if you are not in business or first class I would take something soft to sit on plus some pain killers. Plus flying after catheter out much easier. Or would be a bit of a headache managing it I suspect.
The gym is fine although dont go much with COVID about. No leaks experienced with weights at light to medium level. I dont use a pad at all for this. I do some kegal several times a week. It’s useful to do just some regularly so you become familiar with the muscle group needed to tense when required...i.e. a massive sneeze or forcing wind.
Histology results were thankfully quick for me. The prof said several weeks but I had them in just under a week. If you use the Prof's Santis website that is brilliant as you get them direct as they are sent so all very efficient and making good use of technology so patients are kept in the loop at all times.
The prof sent me an email review of the result and then I saw him at 4 weeks for the formal in person review. Since then I’ve had telephone/skype reviews after 3-month PSA bloods.
In terms of a surgery check list...I did have one somewhere. Will hunt it down. Main things were:
Full length zip sports type trousers which were amazing for accessing my catheter bag on the go and around the house. I bought the Canterbury brand on amazon as was recommended by another patient. They were really good as warm and comfy plus zip allowed me to access the bag anywhere very easily. Ended up buying three pairs :-)
The hospital I suspect will give you a night bag stand for the catheter bag and a 2ltr extension bag. I purchased a large bucket to place that in at night which worked well. If your husband doesnt wake up with a supra pubic tap he will have a normal catheter like I had. They put a statlok device which attaches to the thigh and supports the bag/pipe very well. I was also given a spare statlok so put it on the other leg(thigh) so I could switch the side the bag sat day and night. This reduced the irritation to the end of the penis. One of the statlok clips would pop out randomly so I used to surgical tape for reassurance.
Pants wise avoid anything loose or like boxer shorts. I bought a few packs of Hipster trunks from Asda as worked really well with the catheter and pipe. https://direct.asda.com/george/men/underwear/grey-hipster-trunks-3-pack/GEM738513,default,pd.html
Antiseptic wipes were useful to clean pipes and valves when changing bags at night and first think in the morning. Plus having a wet wipe shower for a few days post-op until I felt confident enough to have a shower.
With the catheter bag its likely there will be a few blockages in the days until removal. Best solutions I found were drinking more and laying on my side. The blockages generally happen inside the bladder where it slightly irritates the bladder lining and causes a small bleed which blocks the balloon valve for the pipe. Laying on your side can allow the blood clots to fall to the side of the bladder and unblock the pipe. Thankfully there was a lot of help on this site with top hints and tips. I panicked a bit initially but after a day or so learnt how to clear it with techniques picked up here.
Bedding I went a bit over the top, but it worked well. I bought a medical grade cheap single duvet and pillow which were waterproof from Amazon. Not great to sleep on but fine for two weeks. This mitigated and risk of me wetting any of my good bedding. Also bought a waterproof mattress cover and some Tena Bed Secure Zone super. These are small absorbent sheets which go under the bed sheet. I placed 2-3 down and have double protection for the bed. Plus tena level 2 and 3 pads for when out and about in the first few weeks post catheter. Level 3 gave the extra reassurance which I found comforting.
A supply of pain killers also useful but I didnt use much at all.
As part of the op your husband will also probably be offered an epidural. I was quite scared of this but went with it as its the gold standard for pain relief. I made a point of not looking at the needle and they use local anaesthetic but I did sting for a moment but it was over pretty quickly. The benefits are huge as I had no post-op pain whatsoever. So thoroughly recommend it :-)
I think thats most things covered off. Also maybe be worth getting some laxatives or lactulose syrup for post op. First few days it’s easy to get constipated. These will help that as the prof recommends not to strain when using the toilet as can damage his amazing work. My gf put me on a vegetable and soup diet post off and after a couple of days things settled down nicely.
So, in summary no regrets what so ever and from erections and continence point of view and surgical outcome massively exceeds my expectations. Just follow the guidelines given in the Profs post op guide and don't over stretch things as it’s easy to feel better than you are after robotic surgery. I was driving week 4 too so all good :-)
My PSA's are still coming back <0.006 (undetectable) and long may that continue.
I wish you both every success with the surgery. I think you are giving yourself the best opportunity of a good outcome with the Prof plus choice of hospital.
Please keep me posted of progress and don’t hesitate to contact me if you have any more questions.
Cheers
Simon