Scaredy cat, cowardy custard or self-preservation

There’s three things I’m still reluctant to blog about. And that worries me.

Here I am, a fairly articulate person, used to blogging about anything that comes to mind and yet I have procrastinated about talking about these things for….well years frankly - in one case most of my life.

The starting point should be easy. Name them.  But I’m even having difficulty doing that. So before I do (if I can overcome this self-imposed mental block) I should maybe explore my difficulty.

Am I reined in because…

• It’s self-indulgent. It’s simply putting my hang-ups out there to elicit sympathy. That would imply that I see myself as…
• A victim. And victims deserve sympathy (probably with copious cups of tea). But of course being a victim removes the element of self-determination and control. Victims don’t choose to be.
• I’m scared what people will think of me. If I stick my head over the parapet, will I get shot?  What will my employers think if they read this? EVen if no-one says anything directly to me, will it colour how they treat me and think about my abilities?
• I simply consider it a sign of weakness to have these hang-ups and I’m ashamed of myself. Big boys famously don’t cry.
• Am I simply seeking catharsis or do I genuinely want to enrich or inspire my readers? Do I actually have a message of hope? I’m sure in one case I do, but what about the others?

So what are these taboo subjects?

Depression.

I know all the figures, the impact that it has on so many people’s lives. It’s symptoms are different in every sufferer and I suspect so is the route to eradicating it. I know that my emotions, in fact the whole “essence” of who I am is simply a mix of chemicals and electrical impulses, but I also know it’s not like dyspepsia or an arrhythmic heart beat which can be treated either by fixing the chemical imbalance or stabilising the electrical currents. Or maybe I should say “won’t” be treated as the cures affect who we are, not what we are. So talking about the depression that I have is probably simply creating a narrative of my inability to celebrate the good things in my life enough to overwhelm the feelings of failure and loss.

The effects of the radical nerve-sparing prostatectomy.

I’m not alone in this. But I’ve struggled to find any balm in the texts that are available. I didn’t ask the questions I should have because I am single and the last thing on my mind when I was being treated was my perception of my “manliness”. But now…. The physical effects are simply symptoms of the surgery and surely I should be able to share my experiences to inform the thousands and thousands of other men who have been through this or who will go through it. It’s as common as rain fall in a Scottish summer. So which of my bullet points is stopping me from exposing my feelings of lost “manliness”? And how does this experience and my inability to talk about it in the wild feed into depression

The treatment I received at Mayfield College.

There. I can’t even name it in the heading. Abuse. At the hands of certain Xaverian “brothers”. There’s plenty of people who come forward and “have the courage” to disclose. Why do I choose not to? And allow this too to add piquancy to my depression?

So I have to choose whether to make an enduring record of these three things. Either locked away in my head or made available to anyone who reads this.

So far it’s been “sit on it. Repress it. The consequences could be enormous” That’s probably not good for me. But is it the lesser of two evils?

Feeling up to it?

If you read my last blog, you’ll be dying o know where the salt was stashed…

It was on the tea tray. Well of course it was. That’s a life-hack you’ll need if you’re in that Ward.

It became very clear that they wanted rid of me asap. I suppose this was the human face of bed-blocking. What seemed to be causing the bed-blocking was my intestines.  Having some blockage of their own. This was question number One from the massive team of consultants doctors students et al who were all on a “need to know” basis. The very stern consultant was unimpressed at my lack of bowel movement and not only prescribed all sorts of remedies.

“You MUST have bowel movement before you can go home!” He thundered at me. “Have you had suppositories?” “Yes” I replied. “But to be honest, for all the good they did I might as well have shoved them up my arse!”

A couple of the students tittered. But from God, nothing. He just walked away.

Now, the priority given to everyone knowing when I pooed seemed to overtake everything else. Suffice it to say all administerings had no effect. For the whole day I was literally bored shitless. And I did wonder if this was really more important than finding out, for example, what I was going home to. Which was no-one. That didn’t appear to be on anyone’s radar.

Next morning at 7:30 the entourage appeared again. Nothing else mattered than was the opening a success. “No progress yet” said I: “Even God’s thunderous words didn’t scare the shit out of me!” God almost smiled. And then pronounced “You can now go home!”.  Perhaps he didn’t appreciate my humour. Still no-one asked what I was going home to. That’s what the fear of bed-blocking produces.

So a car was arranged and turned up at 9. Which meant I couldn’t get any medicine to take home with me. They needed 8 hours notice…… The thought of no Tramadol was not something I looked forward to on the two-hour journey back. Thank goodness for my ex wife Val who saved the day by getting me some from the surgery.

Now, don’t get me wrong. I’m very pleased the cancer was removed. But I can’t say the urge for efficiency has made the whole “hospital experience” any more pleasant.

And next time I’ll tell you about some of the things I should have asked but didn’t, the catheter removal, and the next cystoscopy. And what life after a nerve-sparing radical prostatectomy has been like for me…so far.

Prostate cancer–surgery and recovery

I really don’t know if the medical staff enjoy banter in the pre-op room. I was needing a lot. I don’t mind admitting I was nervous.

I never saw so many people all standing around waiting for me to go to sleep.  This wasn’t helped as the anaesthetist was reduced to kneeling at my left side trying to get the stent in.  I asked if he was going to propose to me. Silence……   He had four goes on my left hand but eventually gave up and proceeded to devote his attention to my right-hand. Sleep came quickly….

I awoke in recovery, desperate for a wee wee. Slurring the words I got the nurse’s attention and she said “Well have one then”

I’d not realised I had the catheter in. It was like learning how to wee all over again. I wasn’t in any pain, and was transported to the ward.

I don’t remember too much about that day. I became more aware of the catheter and bag, and I was given copious quantities of water to drink, paracetamol and antibiotics. My water intake was miniscule in comparison to the other wardees. They were mostly old and were having their bladders flushed out because of bleeding or other reasons. They not only had pipes coming out of their bladders, but ones going in to. Water was fed in and out continuously, day and night, huge quantities and the staff had to change these about every hour, day and night. Sleep wasn’t going to come easy.

But first on their priority list was ordering next days meals. I had to take pot luck on day one. Sandwiches. But what would I have for next day??? No. I didn’t know either. I was concentrating on drinking bucket loads of water, and they wanted me up and moving around too. No lying around in bed.

I can’t say it was a great night, The paracetamol wasn’t really doing it; the douche-bags were getting changed by staff using torches and trying but failing to be “quiet”. I didn’t know how the other 5 folk were sleeping through all this. I found out in the morning.

They were old hands at this, and they knew they would get the good drugs if they asked for it. The ones that have to be signed out by two doctors. I found this out by chance, and once I knew, I put in my request.

I was out of bed at five and walking the corridors.  The staff were impressed but cautioned me about being too active. My special pill came after breakfast. I had obviously order toast, and that’s what I got. Toast. On its own. Thanks goodness I was still required to drink gallons water.

I don’t know what the drug was, but it was fantastic. I was in a very happy place.  I didn’t care about their next objective, getting me to defecate. That became a very important thing. I don’t know if my two visitors were impressed at my state, and I did make up a lot of weird life-hacks and somehow got them scheduled for a Christmas debut. (If you saw my Facebook page you’d know. That caused no end of fuss).  I also manage to take a selfie and upload it. The evidence is there, but not in my memory. I had ordered a baked potato for tea. And that’s what I got.  Baked potato. On its own. No butter, filling or seasoning. It wasn’t till the next day I figured where the salt was stashed…….

Prostate Cancer 2014, the prostatectomy

In 2013 I’d had it in my head that I would have been treated by the end of March. I suppose it’s a human trait to want to get these things over and done with.
I was now on Hormone Therapy, a horrible experience. But t did make me realise what females must go through with the menopause. Get the HRT ladies, the symptoms I had were terrible.
But the bungled CT scan appointment had derailed that. It was a two month wait for the next one.  And I don’t even now know why I had to have it.  As I understood, I needed to have a detailed scan to give the therapists targets to aim at with the Brachytherapy.  But of course that wasn’t going to happen. It was the knife.
And it looked like that wasn’t going to happen any time soon. Scan in March. Go see surgeon in late April. That seemed likely.
I was getting a bit fed up. I have a daughter in New Zealand whom I had been wanting to visit ever since I was diagnosed. I didn’t want her to worry.  But with all the appointments and changes I wasn’t able to book any dates.  So I decided that whatever happened I would go see her over the summer. So I was ruling myself out of surgery until September.
I have no regrets about that at all. I had the best time with my two daughters (I took my younger one with me for 5 weeks, stopping off in Singapore) and my elder was happy to see me looking well. The surgeon was happy too. He told me that I could delay surgery for a couple of years if necessary! 
I went into hospital on September 29th at 08:00. The hospital being in Edinburgh, and me being in Dalbeattie, and the NHS being happy to take me home but not take me to the hospital, I travelled the day before and stayed at a B&B that night. A pretty sleepless time it was too.
No mucking about.  I was prepared and went straight into theatre.
I was first that day. So at least I was pretty sure the knives would be sharp.

Prostate Cancer next instalment…

The memory of that first cystoscopy still remains with me.. Not just for the discomfort.
It came back to haunt me after I’d had the second biopsy that found the cancer.
Once they’d told me I had cancer I went through what I suppose most people do. What does it mean? What’s the prognosis? I got referred to Edinburgh for a consultation with the Consultant…If you get my drift
He seemed a bit keen on me seeing the surgeon, but I thought Brachytherapy was a better choice and we agreed on that. My only concern was having radio isotopes inside me for some time, and how this might impact on my daughter. I was assured it would be fine. But….  I needed a hernia repair, and the consultant told me that I had to have that done before the brachytherapy as they don’t allow the surgeons to be exposed to the isotopes… Yet it was no danger to me……
So I had a hernia repair. The surgeon was a young lass. When she interviewed me before the surgery she said “ Hello dear” [Dear. Dear me]. “Do you know what you’re in for today?” Me: “yeeeeessssss….. I’m having a hernia repair…..” She” That’s right dear.  That’s where your giblets have popped out and we’re going to pop them back in……” ME: “Really….. Giblets…..” She, for the first time looking at my face”":” Oh, a bit too patronising?  Sorry, It’s been a long day…” ME: “Well can you get me a surgeon who’s a bit fresher then please??????”
I didn’t get a fresher surgeon. But hernia done, I went back to the consultant to say, ‘hernia repaired, when can we go for the therapy???”
And that’s when the cystoscopy came back to haunt me. It turns out that procedure had revealed the presence of another “growth” and suddenly radio therapy was not looking a good option. Surgery was recommended…. How had no-one sussed this before? I was told they had a case review, and the surgeon had expressed concern.  I translated that as drumming up more business. Anyway, I was persuaded to have a radical prostatectomy and that would be scheduled after another CT scan, Scan duly arranged for 20th December 2013.
At Dumfries hospital. Scene of painful cystoscopy and patronising surgeon. So I guess I shouldn’t have been surprised when I rocked up on the due date, to be met by the consultant who had a big apology for me.
Someone hadn’t booked the Scanner for me.
My hopes of getting all this sorted in 2013 were then dashed. It took two months to get the next scan date.
I’ll do 2014 next.

Prostate Cancer–my “journey” (I hate that expression)

The discovery that the original PSA test result hadn’t been followed up caused a flurry of activity.
But first a couple of other ironies. I’d just met a new friend who had to tell me they were suspected of cancer. As it turned out she was clear, and then I had to tell her I had cancer…
Because I was bored, I’d promised to do service on a lands End to John O’Groats charity bike ride. It was about a week before we set off that the lead cyclist said to me “It’s very strange how everyone seems to be succumbing to cancer or some other life-threatening thing.  She was a bit taken aback when I said “Well I’ve just been told I’ve joined the club..” But that was the best two weeks I had in 2013. I felt really connected with the fund-raising.
Anyway. I was scheduled for a biopsy, a cystoscopy, a bone scan and a CT scan. All new territory to me. The following is a tad out of order..
The bone scan was hilarious.  It was like a ‘50’s cartoon where the hero would walk behind a screen and the bones would appear.  Yes it took a bit longer in real life but I was in stitches. The nurses gave ne a huge row whilst holding back their own laughs! I asked if the radiation was potentially harmful to my young daughter and they said “no, but don’t spend too much time too close”….?????? I said “good as we’re off to Alton Towers soon”.  That caused some apoplexy, and I ended up leaving with a letter which basically said “If your alarms go off or your machinery is affected as this idiot passes by, he’s not a terrorist, he’s full of radio-isotopes.  Very comforting. As it happened we got stuck on top of the brand-new ride at Alton Towers for over an hour.  I never showed them the letter….
The first CT scan was of course a breeze.
The biopsy was unpleasant. The nurse who did it (who I know, and believe me it creates some social awkwardness when you meet someone who’s been poking about in your bum at the local cafe and pubs after) told me I “would not have cancer, no worries” And the first biopsy was clear.
The cystoscopy was appalling. The “doctor” was unpleasant and dis-respectful.  It was the most painful experience I had ever had. (When I complained later I was told “it just depends who does it”. I was not impressed. However it was the cystoscopy that threw up the complications.
But more of that next time….

Prostate cancer

I really should have started this topic a while ago. Probably in May 2011 when I got the results of my first PSA test. 7.2 (normal is 0-4).

That should have been a wake up call to the doctor, after all he rang me with the results. I had no idea that meant I likely had cancer – the only other person I knew who was having PSA tests was getting results in the 1,000’s.  I know a lot better now.

So nothing happened. Until 2013 when I was at the docs and said I was feeling that I might have some waterworks issues. The initial response was “well you’re depressed and so you worry about lots of things” “But”, said I, fortunately as it happened “I had a PSA test a while ago and it was elevated”
A somewhat pregnant pause. “What PSA test?” asked doc. “Couple of years ago”"….”  Frantic look at computer. “What???  This should have been followed up immediately!” The nurses got blamed.  I was just a tad shocked. But that kicked things off.
Another PSA test led to a biopsy, then another, then diagnosis of cancer, and this September 29th a radical prostatectomy.
Now the point of this initial insight is a warning.  They say that if any many lives long enough, he’ll get prostate cancer.  I don’t know if that’s an empirical fact or not.
What I do know is that I was ignorant.  I had no symptoms, and if I had never mentioned the  first PSA test, I would probably still have no idea that cancer was there.

In fairness a PSA test is probably one of the least reliable tests that exist. And the following procedures are so invasive as to be positively medieval. So checking is not a barrel load of laughs.

BUT…. Men, if you have any concerns, go get a PSA test, and know that anything over .4 (point 4) should be monitored.

I was advised to have surgery because of a complication I had. There are new and effective other treatments available.
I’ll post more on my “journey” later.