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My Retzius sparing RARP + NeuroSAFE journey

User
Posted 14 May 2020 at 18:43

Great news Simon.


Good luck to all awaiting test results.


Angex

User
Posted 16 May 2020 at 17:16

So I am pretty much 6 months post RS-RARP. No incontinence issues and no ED. Been peeing like a race horse and full voiding etc Last night I noticed a build up of fullness in Lower bladder area and no peeing so much. Still peeing about 100-200ml but it’s not coming freely even through drinking lots of water. Any thoughts on this? Could it be caused my the strong coffee I have with breakfast or too much wine? I took some ibuprofen 400mg last night before bed and slept 6hrs. Then woke and peed a couple of time ~350ml then ~150ml and hour or so later after water. Discomfort in bladder area and certainly changed from normal bladder habits. Hoping this doesn’t indicate stricter etc as don’t really want to have to go into hospital? Will start keeping a log of peeing results. Any thoughts or guidance much appreciated.


Simon

Edited by member 17 May 2020 at 05:45  | Reason: Not specified

User
Posted 16 May 2020 at 18:03

Simon


Could be an infection or the result of your intake, constipation ? If it does persist and you suspect some sort of obstruction, it might be an idea to do a urine diary and record the flow, mls divided by secs.


Lots of urine diary charts on the web.


Thanks Chris

User
Posted 16 May 2020 at 18:54
Both caffeine and alcohol are bladder irritants according to my guy (i.e. they make you want to pee more), so I can't see why they should affect retention. I had retention after the biopsy, which they said was down to the anaesthetic. Was also told to not drink too much water at once if suffering from it as it can overload the bladder and make it worse.
User
Posted 17 May 2020 at 05:27
Her Loveliness took exception when I was measuring my flow after catheter removal - “I hope you are not using my measuring jugs!’

I helpfully informed her that urine is sterile and that I would put them through the hottest programme in the dishwasher when I had finished with them. She was still not impressed.

Hope you get sorted, Symantec. The only setback I have had is that I woke up a couple of times with wet pants on the settee after about eight pints, so I suppose they were self-inflicted.

Best of luck.

Cheers, John.
User
Posted 17 May 2020 at 05:52

Thanks all


Recording everything. Have a flow meter somewhere that I bought last year so will dig that out too.


John, I didn’t tell the good lady which jug I used. Although I did chuckle inside when she used it to serve gravy during Sunday lunch 👀 Ah yes...the beer effect. That’s stung me too but moving to wine sorts 100% thus far 🤪


cheers


S

Edited by member 17 May 2020 at 05:54  | Reason: Fat fingers

User
Posted 17 May 2020 at 07:46
Being a kind, considerate sort, I bought a plastic measuring jug for the purpose. Bit of a waste of money, because I only used it about 3-4 times as I got over my retention problem quickly.
User
Posted 19 May 2020 at 06:41

Update on Urine retention:


On Saturday night the Sauvignon Blanc (SB) therapy appeared to work well and relax things. Flow and volume recovered to normal levels. Sunday same flow issues occurred again. The sensation was very similar to when experiencing a ‘freeze up’ over the years occasionally when in public loo. Around 3pm Sunday I decided to test SB therapy to try and determine minimal amount needed to induce openI guess of taps. For me this was ~200ml....single dose to settle the muscles around sphincter which allowed for normal flow and volume. Happy to report that Monday was all normal without needing additional SB therapy. 


Due a telephone consultation with the prof on Friday so will talk through it.


what I’ve done in the meantime in increase exercise levels as had been pretty lazy recently. Removed coffee from my diet (I only had one turbo filter coffee mid morning a day) and reduced time spent sitting at computer as this appears to exacerbate pelvic floor discomfort. Plus restarted my pelvic floor exercises to stimulate the muscles in the area. So far so good.... Whole episode was very odd indeed but pleased I didn’t need to visit A&E.

Edited by member 19 May 2020 at 06:50  | Reason: Not specified

User
Posted 19 May 2020 at 15:16

Best of luck with the upcoming consultation TG, and hope all goes away soon!! 

User
Posted 19 May 2020 at 17:14

Hi AT


Thank you :-). Water works all back to normal now so I have no excuse to randomly quaff Sauvignon Blanc. Hope you are all ok too.


TG

User
Posted 20 May 2020 at 06:24

That’s great to hear! We are ok, just following the whole Covid situation anxiously.... 

User
Posted 20 May 2020 at 07:08

Originally Posted by: Online Community Member
Recording everything. Have a flow meter somewhere that I bought last year so will dig that out too.


Curious what sort of flow meter you got?


I knocked one up from some scales and a Raspberry Pi (computer, not dessert) the first weekend when I was having my external beam radiotherapy.


And recording everything - a man after my own heart. I do still record peak flow rate sometimes, and 9 months after HDR brachytherapy treatment, it's still slowly increasing, although not yet back to the starting point.

User
Posted 20 May 2020 at 09:09

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member
Recording everything. Have a flow meter somewhere that I bought last year so will dig that out too.


Curious what sort of flow meter you got?


I knocked one up from some scales and a Raspberry Pi (computer, not dessert) the first weekend when I was having my external beam radiotherapy.



Any thoughts on this Andy? I'm thinking of making one too


https://hackaday.com/2018/04/01/assess-your-output-with-a-cheap-diy-urine-flowmeter/


Cheers


Bill

User
Posted 20 May 2020 at 11:04

I gave a presentation on the flow meter I built to a group of Raspberry Pi enthusiasts, and cleverly turned it into a prostate cancer awareness session for an audience which was almost entirely men of the age to be getting tested - not what they were expecting, but they clearly enjoyed it (in spite of my laptop and the projector keeping falling out of presentation mode).


https://skillsmatter.com/skillscasts/14627-scales-and-flow-meters


The figure you are looking for is peak flow rate. Can also be useful to know your bladder capacity. Flow rate meters produce a lot more info, but the urologists I spoke to about it said they don't use any of the other data.


The one you point to looks fine, although I only skimmed the videos.

Edited by member 20 May 2020 at 13:24  | Reason: Not specified

User
Posted 20 May 2020 at 14:38

Hi Andy


I’m a computer and data guy too. I didn’t dust one of the pi’s off but went low tech: 


MDTI Myaid UFlow Meter from amazon. Seemed to do what I needed when I picked it up mid last year. Good for gathering more data but didn’t use it for the issue this time as was doing more volumes in/out. If the problem had persisted probably would have started to gather flow stats.


https://www.amazon.co.uk/dp/B00QTREFCW/ref=cm_sw_r_cp_api_i_9yoXEbG2K3ZR0


Thankfully looks fully settled now. Fingers crossed it doesn’t pop up again but I have a bottle of Sauvignon Blanc in the fridge just in case as first course of treatment 🤠


Simon

User
Posted 21 May 2020 at 21:01

Just out of interest I decided to see if I could trigger the urinary retention issues again today. Had a strong coffee at 11am (first since Sunday). At 3pm same retention issues surfaced again. Loaded on a few glasses of water. Was able to void between 50-100ml at intervals over a 3hr period. Whereas I’d normally be doing 350ml every 30 or so minutes when drinking lots. At 6pm decided to try the antidote... ~200ml Sauvignon Blanc....20mins later voiding normally. Will try again next week but useful tests. Will mention to the prof tomorrow morning.


Simon

Edited by member 21 May 2020 at 21:02  | Reason: Not specified

User
Posted 21 May 2020 at 23:39

Ask for a prescription...

User
Posted 22 May 2020 at 06:15
You could always test your flow rate by drinking a gallon or so of best bitter and checking on it by pissing into the empty pint glasses whilst timing it on your phone stopwatch.

Not in a pub these days, obviously, (that kind of behaviour in the lounge probably would have got you barred ‘before’!)

I buy 5° Amber Ale from Aldi for £1.09, saving me at least £2.50 if I’d bought similar in a pub.

Cheers!

John.
User
Posted 22 May 2020 at 09:43

Spoke to the Prof. He’s very happy with PSA levels etc and said it accurately reflects my Histology which is great.


In terms of the retention he said a lot of things could irritate the bladder neck post surgery and that the brain is still relearning the new pathways and nerve signals so not to be too concerned. Additionally scar tissue tends to reach a plateau of healing and softening after between 12-18months so things should settle even more. 


He said he wasn’t aware that Sauvignon Blanc had such magical medicinal properties but regretfully cannot prescribe it. Worth asking eh..... 🤪😀🤓


So hopefully a fairly quiet period from a urology perspective until my next PSA and review in three months.


Have a great bank holiday folks and stay safe.


Simon 

Edited by member 22 May 2020 at 09:43  | Reason: Not specified

User
Posted 22 May 2020 at 09:57

Originally Posted by: Online Community Member


Not in a pub these days, obviously, (that kind of behaviour in the lounge probably would have got you barred ‘before’!)

Cheers!

John.


 


It would be perfectly normal behaviour in a rugby club, though. 


Tech guy - 👍


 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 May 2020 at 10:00

John


I’d need more than two hands for this 🤷🏼‍♂️ 🐙 


Purchased some more Sauvignon Blanc...for medicinal purposes 🤔


S

User
Posted 23 May 2020 at 00:51

We’re quite a jolly little group here sometimes aren’t we, given that many are are riddled with cancer?


League or union, Matron?


Cheers 🍾 🥂


John.

Edited by member 23 May 2020 at 05:30  | Reason: Not specified

User
Posted 23 May 2020 at 11:26
How dare you 😱 - union, obviously!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Jun 2020 at 17:25

Update month 7:


Just a quick update. All still pretty stable. Pelvic floor discomfort improving slowly. Couple of bladder voiding issues which were quickly mitigated with Sauvignon Therapy. Since then I found coffee and hot curries were trigger foods although had been eating for months beforehand without issue. Removed these from my diet and problems totally resolved and peeing like a racehorse.


So all good thus far. Hope everybody is staying safe and enduring the lockdown.


Have a great weekend.


 


Simon

User
Posted 12 Jul 2020 at 22:21

Originally Posted by: Online Community Member


Curious what sort of flow meter you got?


I knocked one up from some scales and a Raspberry Pi (computer, not dessert) the first weekend when I was having my external beam radiotherapy.


And recording everything - a man after my own heart. I do still record peak flow rate sometimes, and 9 months after HDR brachytherapy treatment, it's still slowly increasing, although not yet back to the starting point.



Another techie here. Spent a couple of hours with a Pi and HX711 scales kit this evening. It works more than well enough to confirm my suspicions that flow is much better post surgery (17, up from 10). I will probably now spend far too long making it draw pretty charts from the data with matplotlib 😂

User
Posted 12 Jul 2020 at 22:37

hahaha my flow nominally is as good pre-diagnosis. Does go up and down a little but mostly fine. The nerves/brain are still forming the new neural nets to cope with the change of config :-)


Visualising it in Oculus Rift VR would be cool :-)


 

User
Posted 12 Jul 2020 at 23:23

And I thought I was over the top with a boots urine bottle and the second hand of my watch.🥴👍.


Thanks Chris

User
Posted 13 Jul 2020 at 18:26

Originally Posted by: Online Community Member


Visualising it in Oculus Rift VR would be cool :-)



If you had the goggles on while you did it, the wee would very likely not end up in the intended receptacle. 😂

User
Posted 13 Jul 2020 at 19:18

Hahahaha bad enough trying to find the keyboard keys 🤓


I used oculus to help visualise my 3T mpMRI image data. After looking at lots of reference images I would able to determine the suspect areas before seeing my consultant for feedback and the dreaded diagnosis. I made a few 3D cross sections looking outwards and showed then to my good lady whose words were ‘I cannot unsee this...’ 😝🤖

User
Posted 28 Aug 2020 at 13:48

9 months posts a RARP Update:


PSA Bloods result came back <0.006 ....so using the sensitive kit again by the looks and great result. Next test will be mid November then onto 6 monthly test assuming no change.


Pelvic floor discomfort resolving slowly. Couple of Minor drips here and there mainly if I’ve had a skinful of wine so now cut down a non issue. 


Good bladder Control and pretty much like pre surgery. No ED issues...the more I use it the better things get so tadalafil isn’t necessary really. I take a couple of 2.5mg doses if I want to feel like a twenty something again 😀


Have a good bank holiday weekend all!


Simon

Edited by member 28 Aug 2020 at 17:31  | Reason: Not specified

User
Posted 28 Aug 2020 at 14:46
That's great news Simon

You really have had the perfect outcome and that is so great to read.

Have a great bank holiday

Clare
User
Posted 28 Aug 2020 at 15:09

Fantastic update


Really pleased you have such a great outcome


Enjoy the Bank Holiday!

User
Posted 28 Aug 2020 at 16:02

Good result Simon. 😀

User
Posted 28 Aug 2020 at 16:56

Simon


Excellent results on all fronts, long may it last.


Thanks Chris

User
Posted 28 Aug 2020 at 17:07

Great result Simon. 

Ido4

User
Posted 29 Aug 2020 at 08:57
So, Symantec, Professor Whocannotbenamedhere strikes again!

Sorry you have had persistent pelvic pain, but as I have said before, my surgery was shockingly painless - that Fentanyl and spinal jab do a bloody good job!

My abbreviated penis now only works for micturition, so you are lucky in that regard, but the rest of my plumbing works fine.

I have extended my PSA tests to six months, although I will have one before Christmas to put the PSA graph on my customary Xmas card to the Prof., together with a can of WD40 as a drink for his pet, Da Vinci.

Stay well!

Cheers, John.
User
Posted 29 Aug 2020 at 11:24

Hi John


Its more discomfort when seated. I suspect its from the scar tissue so over time will soften and settle and become more flexible. Nothing I notice when active and out and about.


Yes apart from the needle the spinal anesthetics were certainly gold standard. I used very little over the counter painkillers post surgery. Plus was very happy to wake and find I wasn't plumbed into an abdominal drain.


Good to hear the plumbing is well settled.


Keep up posted on your next PSA result!


Have a good bank holidays weekend. Bit of a shock this 18C :D


Simon

User
Posted 16 Oct 2020 at 20:16

Hey AT


tried to respond by inbox full.


That’s great news. Just wanted to ping an email to say I picked it up and want to respond but need my main computer as long email. Give me a day and will address all points in detail. In short all great thus far....almost have to kick myself to believe I had major surgery last year. Are you booked in to London Bridge? 


will be with my main computer in the morning so will respond more then.


speak then


Simon

User
Posted 18 Oct 2020 at 09:32

Thanks so much TG. I will clear out my inbox and I don’t know why it is always filled up!! 


Yes it is at London Bridge. Speak soon! 

User
Posted 18 Oct 2020 at 09:40

Ps my inbox should work now. Pls let me know if there is an issue. Thx much as always! 

User
Posted 19 Oct 2020 at 23:25

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

User
Posted 20 Oct 2020 at 14:32

Dear Simon, 


Thanks so much for the very detailed reply and I don’t know what’s going on with my inbox. I have archived everything and it says that it’s got 100% space left? Is there someone on the site that I could contact to sort out this inbox issue? 😅


What an amazing post surgery outcome on all fronts and it is so encouraging for us to hear such stories going into this, worrying about all sorts of scenarios. 


Thanks for putting our mind at ease about the hospital esp that he will have to do this by himself in such a strange world these days. We just have some concerns about staying in hospital during Covid — not sure if London Bridge is Covid free or if only people testing negative are allowed in. I will try and see if the assistant could help with this. 


It would be super if you could share the surgery check list if you manage to track it down. 


He is flying 3 weeks post op long haul and yes have upgraded the return flight just to make it as smooth as possible. Got a seat close to the toilet! I hope the risk of DVT post op on a flight would be low. Did the wounds feel definitely 100% healed by 3 weeks? And when did you get your first post op Psa test to see if it is undetectable? We thought about staying for that, but worried that it may just end up being too long of a wait and can just run a test here .

Again thanks so much for everything and all the encouraging replies which I am sure I will be reading multiple times to keep myself calm during the unbearable waiting period. We will certainly keep you posted how things go regarding the surgery and recovery etc. I might come back and trouble you with a few random questions as always and hopefully I can get my inbox sorted soon! 


Best regards 


AT


 


 

User
Posted 20 Oct 2020 at 14:59

Appletree


From memory you are only allowed 99 or 100 messages, even if you archive a message it still counts as a message. I have just archived three messages the percentage goes down but the number of messages remains the same.


Thanks Chris

User
Posted 20 Oct 2020 at 16:14
The best thing PCUK could do is remove the inbox completely so that questions and replies are all public. It is so dangerous; replies could be filled with inaccuracies and no one would know to correct the misinformation.

Archiving doesn't free up any space.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Oct 2020 at 04:41
My inbox has been full forever! Don’t know how to empty it.

Cheers, John.
User
Posted 21 Oct 2020 at 07:39

Originally Posted by: Online Community Member
My inbox has been full forever! Don’t know how to empty it.

Cheers, John.


Click on "Help" there are instructions there, on how to delete old messages - you are only allowed 100.

User
Posted 22 Oct 2020 at 00:42

hi AT


I'd talk to the Profs PA as she should be able to get the details :-)


I think with the injections and keeping hydrated and moving about a bit should have all bases covered. Just ensure you take appropriate documentation if taking the clexane syringes onboard ie through security and customs.


The prof recommends the first PSA test be done at 10 weeks. Then he reviews week 12.


You should have all the list components in my post. If I think of anything else will post them. Definitely a memory foam or inflatable cushion might help during first weeks of recovery and on the flight.


Please do feel free to ask anything as it comes up!


Simon

User
Posted 27 Oct 2020 at 21:40

AT


these are also very good. I had them with me travelling to and from London Bridge. Ideal for use if catheter bag full and need a quick expansion tank. Originally used TravelJohn (bought on Amazon) a few years back for camping. Ideal when freezing at 4am and you don’t want to walk to outside loos :-). also great for many other uses as I figured. 

http://www.traveljohn.nl/en/our-products/


cheers


Simon

User
Posted 02 Nov 2020 at 12:22
Thanks TechGuy for a detailed story of your journey. As a newly diagnosed fellow IT guy who's 50 I've been interested to read your experience. I'm still working out a week after diagnosis what my options are and how best to deal with this, sadly no private medical cover so likely some reduced options.

I had been leaning towards HIFU as my cancer is I believe one side of the prostate but I've still to have a detailed call with someone to get the full low down. So far all I know is my gleason score and that it' apparently localised. I'm learning more as I read more so my questions lists is ever growing.

Like a good IT consultant I'm making a spreadsheet!
User
Posted 02 Nov 2020 at 12:58
If you click on my profile ‘Bollinge’ you can see my notes on my surgery with the same guy as Symantec (Tech Guy).

I and four friends aged around sixty were all diagnosed with cancer about two years ago. Three of us had ‘top-rated’ surgeons, yet the other three apart from me had recurrence and had to resort to radiation therapy, which they could have had anyway, without surgery.

So make sure you speak to an oncologist as well to discuss your options.

Hifu is a bit of a high-falutin’ innovation, not widely practiced, but ‘Old Barry’ here is well versed in it and able to advise. Get in touch with him.

Best of luck.

Cheers, John.
 
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