Monday 21 August 2023

Pain diminishing, tiredness increasing - Post Prostate removal day 12

It's now 12 days since I hadwht my prostate removed at the London Bridge hospital. In two days I will have my catheter removed and will know how it has affected my continence and what sort of erectile function I have. The good news is that there is almost no residual pain, although I can only sit down for short periods as my perineal area becomes sore very quilckly. Oddly I did not notice this until last Thursday and if anything it has become worse. This is now the only real pain that is bothering me, apart from the odd bit of irritation from the catheter. What has become far more pronounced is the tiredness. This has actually been far worse this weekend than it was the first weekend after I was released from hospital. I've set myself a target of walking two miles a day and yesterday this was a real struggle. 

I spent most of the day watching football and dozing off. I've noticed that my urine has also been much pinker than it was for much of last week. It is not dark red, but there is definitely still a small amount of bleeding taking place. From reviewing my literature, I've concluded that this is nothing to worry about, although I will discuss with the team when I see them on Wednesday.

So far today, I've not felt as tired. Clare and I took the dogs to Lyndhurst Park for the first time since I had surgery. I didn't find it too bad, but had a sit down on a bench at the park whilst she through the ball for the dogs. 

I had hoped to have returned to work today, but got cover in as I do not want to overdo it. Duing the early part of last week, I thought I'd be fine, but I have realised that I do need to take this all rather easy. I do hope that the perineal pain dimishes considerably over the next few days, as I'm due to take a short break in France at the end of the week.

I've still not had a drink and TBH I've no desire for one. We did manage a takeaway curry and some fish and chips over the weekend, although my apetite is not fully recovered. I'm not off my food, but I am not really feeling very hungry either. 

I've started following a couple of Prostate support groups on Facebook. It is interesting to note the number of female partners who post. It brought home just how difficult PC is for partners. I've realised that my early detection has (thus far) spared me some very difficult issues. Reading some of the stories from men and their partners with stage 4 PC are heartbreaking. The last few months have been tough, but I'd far rather be able to make choices that I've been given than be in the position of some of the poor chaps who's stories I've been reading. One of the missions of this blog is to get as many men as possible over 50 to get a PSA test. It's not perfect, my last few months haven't been fun, but the disease is not in my lymph nodes, glands or bones. I am hoping that the op will keep it that way.

To sum up, I'm recovering, not quite as fast as I hoped, but I am recovering. Wednesday is the big day when I will really have some idea where I am. 

I wrote a little song to encourage guys to get a test, before they get symptoms. Please pass the message on.

.--- 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 60 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. My MRI in March 2022 showed 'a change' so I am now awaiting a biopsy. I had a PSA test in late March which also showed a marked increase to 10.3. I 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. I saw the  surgical and oncology team to weigh up the options. I was none to impressed with the UCL surgical team and their attitude to my concerns about impotence. They told me that due to my previous HiFU treatment, nerve sparing was not an option. I was very much leaning towards radiotherapy, when a friend recommended a second surgical opinion. I saw Professor Christopher Eden, who advised that using the Neurosafe procedure, I would have a good chance of retaining erectile function. I decided on this option and had a radical prostatectamy on Weds 9th August 2023. 

Things are not great but they are not dire either. 

 I've no symptoms apart from needing to wee quite regularly and sadly for a few people, if I'm gonna die soon, it (hopefully) won't be from Prostate cancer. Got the picture?


Martin Francis said...

Congratulations on writing about this difficult (for most men) subject. I do not (yet) have prostate cancer but an enlarged prostate has needed surgical reduction (a TURP). As a result of talking about it I found a number of male friends were suffering from the same issues, often quite isolated, so I am happy to join your mission to get men to talk about it - as solidarity and self-education.

Initially I had a catheter fitted (the full works with day bag on the leg and overnight bag) and found it uncomfortable and painful at times. The thought of having one for the rest of my life was profoundly depressing. After the TURP, retaining the catheter was deemed necessary but fortunately I was offered one with a short tube and a tap that meant I could release urine as and when required and was not hefting around a bag of urine.

What really changed things was a nurse practioner at Northwick Park Hospital persuading me of the merits of self-catheterisation. I shrank (literally) at the prospect but she helped me with my first attempt and I found inserting the catheter myself and guiding it past the prostate was less uncomfortable than having someone else do it. At first I was using the disposable catheters several times a day but soon only needed to do it once a day, before going to bed. The catheters are supplied on the NHS by a very efficient delivery company.

Unfortunately the prostate grew again and I was retaining urine, threatening my remaining kidney (one had ceased operating at the start of this saga) and another TURP was suggested. I am getting on (76) and another operation was not a great prospect so a consultant at Charing Cross Hospital suggested drug treatment instead.

I am now on a drug called Finasteride that works to reduce the size of the prostate. It does have some side effects including the possibility of loss of erections and this may put some men off.

It has worked for me so far. Initially I used self-catheterisation nightly but when a three day bladder diary showed I was not producing a significant amount of urine (having full emptied my bladder naturally during the day) I was advised to just check occassionally that I was fully emptied.

These different forms of catheterisation and treatment may not suit everyone so I am not advocating but letting men know they are available.

Thanks again for posting about these issues.

Rog T said...

It is important to discuss these issues. When it is all demystified people get the right treatment, get a better quality of life and live longer. It is important. Thanks for the comment