4 weeks and 1 day since Radical Prostatectomy and bilateral lymph node removal. Thoughts, impressions and experiences so far.

I’m now 4 weeks and 1 day since my Radical Prostatectomy and bilateral Lymph Node removal. I thought I would collate my thoughts, impressions and experiences as they may help someone in the future, and it would be good to document the thoughts before they fade away.

I decided pretty much straight away this is the route I wanted to go. My father in Law passed away from PC and I just wanted it out. I had mentally accepted the trade off of getting the cancer out against the disadvantages of incontinence and erectile dysfunction.

Preparation

I started doing pelvic floor exercises in preparation after reading the information leaflet from NHS.

I had been doing 100 press ups a day since last November supporting cancer research. So my core strength was pretty good.

One thing I picked up from this forum was to say you would travel anywhere and take any cancellation. When I saw my surgeon initially in Worcester to discuss the Radical Prostatectomy I asked how long it would be to the Operation and he said “could be as long as 6 months”! And then went on to say “we are shipping people to Northampton”. I jumped in at this point and said “well I’ll travel anywhere and take any cancellation” he made a note of this and I was duly transferred to Northampton and saw the surgeon a short time later (See profile for dates) . On asking the Surgeon when the operation may take place he said “Oh, in about 2 weeks”!!!! True to their word I was called back following week for pre op checks and then got a date for the following week. So a big thank you to whoever put that on the forum.

Operation

The anaesthetic was brilliant. It was like someone switched off a light switch and suddenly turned it back on and I was in recovery. Nothing to worry about at all.

I have been asked if it was painful. But to be honest I don’t think I have experienced any pain as such. Although my tummy was sore, its more of a grumbling ache which was manageable. The worst thing was when I needed to cough. Top tip from the Urology Nurse – when coughing hug a pillow tight into your stomach to support yourself. It does help.

I was amazed how small the incisions were. Im a bit squeamish and didn’t take the dressings off for a week in the shower. When I did everything was good and they healed fast.

As I had a bilateral lymph node removal, I also had 2 drain tubes coming out each side of my stomach that drained into 2 bags whilst in hospital. Made things complicated getting in and out of bed. I wasn’t looking forward to them being removed, but it was no problem at all. It was a weird sensation but nothing to worry about at all.

The operation interrupts your digestion and you want to get it working again asap. It was 6 days after until I had a No.2. I ate as much fruit, vegetables and salad as possible afterwards. Also drinking enough water to float a boat. It helps getting things moving and eliminated the possibility of constipation. The last thing you want is to be constipated and having to strain with a tender stomach. They do send you home with laxatives just in case. They constantly ask if you are passing wind or opening your bowels to check your on the right track. I took some fruit with me which was good as by the time I got to the ward I had missed tea.

After the operation you can experience a sharp pain in your shoulders. This is due to the gas they expand your tummy with. Getting up and active as soon as you can will help eliminate this. I was up walking about the following day, although with a catheter bag on my leg and 2 drain bags (which I secured to my gown) dangling about and trying to keep the gown closed at the back, it was a bit tricky. 

I recommend taking a sleeping mask and ear plugs if you want to get some sleep. They did hand out packs but the ear plugs were too long. I use the yellow industrial ones which are shorter and fit better. I use them in hotels and camping.

Catheter.

The catheter was a bit of a chore but it’s a necessary evil and I had it in for 2 weeks.

It’s a bit weird seeing a pipe emerging. But you soon get used to it.

The thigh support that the hospital gave me was useless. It’s important to support the tube so it doesn’t tug. Particularly important when you're walking. I went for a walk every day and didn’t want to cause any problems by tugging or get sore.  I went on Amazon whilst in the hospital and had 2 much better items waiting for me when I got home.

Bits going down the catheter tube is normal; I wish I had been told this previously.

Get yourself a clean bucket, the night bag that is attached has a hook that can be fitted to the edge of a bucket. It keeps the night bag upright and contained should any leaks occur.

TWOC – Trial WithOut Catheter.

When your catheter is removed, you will be incontinent. So go prepared to your appointment. I had been on YouTube watching other guys videos who have been through this and Tena Men’s briefs were highly recommended and I can vouch for this. They are so absorbent and odour free. I have blue ones for the day and my white maxi absorbent for during the night that my wife and I call “Sumo Pants” I also have pads for when I start gaining some control.

During my time wearing the catheter I brought the cheapest baggiest jogging pants I could find. I then cut the elastic hems off. This meant I had plenty of room, but I could raise the hem to empty the bag which was quite convenient.

I had my catheter in for 2 weeks and I must say I was glad to see it go. It makes sleeping, walking and almost doing anything complicated.

Again, I wasn’t looking forward to it being removed but it was no problem at all.

Deep breaths and its out before you know it. BUT you will be incontinent. The nurse removed it, I stood up, jumped into my Sumo pants and promptly peed myself for the first of many times which felt very strange.

They also took my clips out. A couple nipped a bit, but Ive felt worse giving blood samples.

The TWOC appointment takes a couple of hours. They remove your catheter, then you have to drink water and after some time visit the toilet to empty your bladder. You have to prove there is no blockages and you can pee before they let you go home.

I was advised to go for a walk to help the water percolate through. It was a very strange sensation walking up and down the corridors of the hospital, peeing myself in public, but my Sumo Pants coped easily.  

Post TWOC to now.

I downloaded the NHS Squeeze app and realised I wasn’t holding the squeeze for long enough. I have been using it religiously which reminds you when it is time for your exercises and keeps a record. I recommend it.

When I got home I quickly realised I was very incontinent, although not so bad during the night. Luckily I wake when I get the urge to pee, so I have had no problems flooding the bed. The last 2 nights I have only needed the bathroom once. A big difference from when I first got home and woke 5 times. This may be because I am n keeping hyrdrated drinking plenty during the day, but not drinking after 6.00pm.

I was quite paranoid about things at home and probably went overboard in my preparation’s. I bought a mattress protector and some smaller waterproof sheets and even more absorbent Sumo pants. Everything available next day on Amazon Prime.

Again I’m taking a gentle walk every day.

It’s when I’m walking that I get small spurts, but it seems to be getting better.

Erectile dysfunction. – I hope this is not too much information.

I have not had an erection since the operation. The point now is to focus on rehabilitating my self by encouraging blood flow. A nurse said a soapy hand in the shower massaging can help which does seem to have a slight effect.

I have ordered a months supply of 5mg of Tadalafil for daily use. This is not to produce erections but to encourage blood flow and circulation. I took the initiative as I seem to have fallen through the cracks of the NHS on this. The hospital referred me to my GP for this and my GP has referred me back to the hospital. I couldn’t be bothered fighting the bureaucracy and will take them daily until I see the surgeon in 3 weeks, I can then discuss it with him. They were £25 online.  The Urology Nurse said he will be able to prescribe Viagra which has the same effect.

I have experienced a couple of dry orgasms (no ejaculate) within the last few days. So, there is still some life down there and pleasure to be had after a Prosatectomy.

So here I am. In the words of the late great James Brown. “I feel good”.   

I hope the above might be of interest or help to folk who are considering which route to go down after diagnosis.