Post op recovery - pills, pumps and physios - Rog T's cancer blog

 Yesterday was a significant day on my road to recovery. I had my first appointment with Mr Gerard Greene at the London Clinic to discuss my recuperation from radical prostate surgery. When I had my op on 9th August, I was advised that physiotherapy was a key part of the process and was advised to see a mens health specialist physio. After some searching, I found Mr Greene based at the London Clinic on Queen Anne St. I was quite surprised just how few specialist physios there are in the field of post op recovery. One thing I've learned on the journey is that if you see a specialist, you get better care and if you see the best you get the best care. Mr Greene is highly recommended. 

I booked the appointment nearly a month ago. I still had a cathetar in and didn't know what my situation would be with regards to post op continence and erections. Mr Greene told me that the first assessment was normally 90 minutes. There was usually a lot to discuss. To be honest, I had no idea what to expect from the consultation. I arrived at the clinic and was ushered in by Mr Greene at 2pm.

The first question was continence. This has not been a problem at all. After the cathetar was removed, I wore pads for about ten days, but as I had no accidents in this period, I stopped wearing them about ten days ago. I've been fairly careful and I am more or less back where I was before the op. Mr Greene expressed a degree of surprise that I was dry so quickly, saying it was pretty unusual. I told him I'd done pelvic floor exercises before the op, to strengthen the muscles in anticipation, a hint I picked up on the facebook groups I follow. Mr Greene told me that for most men, the main focus of the first three months was getting dry. He then gave me an ultrasound scan, whilst doing pelvic floor exercises. He informed me that my surgeon had done an excellent job (thank you Professor Christopher Eden). He said he'd not actually seen someone who's continence was as good at the same period before. He confirmed that Professor Eden has a reputation as being exceptional.  I suppose that there may be some caveats on this, not least that many men will only pay to see a top private physio when they have problems, but it was very reassuring.

Then we got on to discussing erections. I informed him that I hadn't had one since the op, there were a few murmerings. I told him that Professor Eden had written to my GP requesting I get a prescription for tadalafil 5 mg a day to try and restore function.  Rather annnoyingly, I've heard nothing from my GP. Mr Greene suggested I get on the phone and get this ASAP. He explained that the purpose of this low dose viagra type drug is to stimulate blood flow. It is a viagra type drug but at a low dose does not trigger erections. He then asked me if I'd been given a vacuum pump. This is a device that you insert your penis into and then draw the air out. This expands the penis, stimulating blood flow and causing an erection. Having a schoolboy sense of humour, I'd considered the idea a bit funny, if I am honest. Mr Greene explained why it is used and I realised I had a complete misconception as to why it is used. My assumption had been that the penis was inflated like a balloon, then the man would try and have sex before the blood dissipated. He explained that the main reason for using a pump was to restore healthy blood flow. For men such as me, that have had nerve sparing surgery, the purpose was to restore vascular health to the penis. Not having erections for a month or so, has meant that the blod vessels have got out of shape. He explained that the reason men have nocturnal erections whilst asleep was to keep the penis in good working order, for when it may be needed in the day time. The pump gets this going.

He also explained how the nerves around the prostate are bashed and bruised by the action of ripping out the prostate. They take time to recover and the pump ensures that when they do, the plumbing is in place to work.  I found this fascinating. I know from conversations with other men, that not too many actually understand this. A pump is available on the NHS and he is forwarding details of how to get one. 

I then asked him whether he minded if I mentioned him in this blog. I work on the theory that people should only be named with consent. He was delighted and we spent a few minutes discussing the general issue of the misunderstandings around the whole issue of mens health. He told me of one well educated person he'd spoken to, who thought a PSA test was a finger up the bum, not a blood test. 

On reflection, I realised that on my journey from 2011, I have learned a huge amount. Perhaps the thing that most daunts me is the fact that had I been a  gleason 4+4 in 2011, rather than in 2023, I'd have been totally unprepared. I'd not have known about nerve sparing surgery being the most important part of the picture. On thing I learned from Professor Eden and his use fo neurosafe is that when surgeons who don't use it say they will "try and save the nerves", they are just guessing. That is why some men have what is called positive margins after the pathology report of the prostate is done. With neurosafe, this should never nbe the case (a positive margin is when not all cancer is removed). 

I have a dear friend who had a radical prostatectomy in 2016. He didn't have nerve sparing and hasn't had an erection since. Now it may well be that in his case, the nerves couldn't be spared, I've not had that conversation, but I do wonder if he'd had the options I had, as a result of the journey and the knowledge I'd acquired, whether he'd have made different decisions. The problem is that when you are told you are in a state of shock and you have to decide what to do relatively quickly. I am not sure men always make the best decisions. In hindsight, I believe my decision to have HIFU in 2016 and RP with neurosafe in 2023 were both sound decisions. 

One thing that I have come to passionately believe is that, given that between 1 in 4 to 1 in 8 men (depending on ethnic background) will have prostate cancer at some point in their lives and 12,000 a year die of it, surely mens health should be taught at schools?

I'm lucky. I was diagnosed early and I armed myself with the best information, that gave me a chance of the best outcomes. I wrote a song, telling my story. Five weeks on from the operation, I am doing my first post op gig and singing this will be rather emotional for me. If you can make it along to the Dublin Castle in Camden Town tonight, please say hi. I think of myself as a survivor, not a victim. I live to fight another day and fight I will!

--- About this feature 

For those of you who are regular readers and have read the previous posts on Cancer, there's what this is all about. I write this blog because knowledge is power and if you know what you are dealing with, you have more weapons in the locker to fight it. It is a personal view, I'm not medically qualified. This is for the sole purpose of information for those who are interested.This is the latest installment in my occasional series about how I'm adjusting to living with a big C in my life. 

 For those of you who aren't, here's a quick summary. I'm 61 years old and in October 2011 I had a prostate biopsy following two "slightly high" PSA tests - 2.8 & 4.1. The biopsy took ten tissue samples and one of these showed a "low grade cancer" which gave me a 3+3 on the Gleason scale. I was put on a program of active monitoring. In early February, I got the results of the a PSA test - down to 3.5 and an MRI scan which found absolutely nothing, two more tests in 2012 were at 3.5 and 3.9, in 2013 my test was 4.0, Jan 2014 was 3.8, August 2014 was 4.0, February 2015 it was up to 5.5 and my latest in August 2015 was down again at 4.6. In October 2015 I had a transperinial Prostate biopsy, that revealed higher grade cancer and my Gleason score was raised to 3+4 (Small mass + more aggressive cancer). On 22nd Jan 2016 I had HIFU (Hi Intensity Focused Ultrasound) treatment at UCHL). 

My post procedure PSA in May was 4.0 which was down, followed by 3.7 in August, and 3.5 in October which means that the direction is positive . However in January the follow up MRI revealed "something unusual which requires investigation" After a follow up biopsy, it appeared this was nothing to worry about. My two most recent PSA tests were Ok (3.7 and 4.6) and an MRI scan in March was very positive. A PSA in October 2019 was 4.6, so stable and good news, the last in May 2020 was 5.45 a small rise, so worrying, however after a review against the most recent MRI, it was decided that this was fine. My two latest ones in February 2022 was 6.7 and October 2022 was 6.6 was stable. 

In March 2023 had an MRI scan that showed 'significant change'. This lead to a biopsy that indicated a tumour of 4mm that had a gleason score of 4+4. A PSA test in June saw a rise to 12. On 9th August, I had a radical prostatectomy and am currently recovering. Early days, but hopefully the surgery has curedt he problem of cancer. My continence is good, the next batttle is erectile function.

Got the picture?