A huge mistake I could have made with disasterous consequences

I am writing this blog in the hope that if anyone finds themselves in the same position as me, they don’t feel the way I have over the last week or so. This is a long read, so please be aware at the outset.

If you have aren’t one for gruesome details, you may feel it’s better to give the post a miss, but I want to share this so that I may help just one person. I make no apologies for sharing intimate personal details, even though I find it embarrassing and humiliating to do so. There is a bigger picture to share.

The backstory – December 2016.

After having a lump found on my kidney, I had the kidney removed, After a couple of days in the hospital, they removed the catheter from my penis and once I’d passed water six times, I was allowed home.

After a week or so, I noticed that when I went to the toilet, the flow appeared to be weaker. Over subsequent weeks, it deteriorated more. I was struggling to go to the toilet even though I needed to.

Visits to the GP followed and tests were done; feeling that it could have been a prostate problem, I spent six months taking tablets only for it to get slightly worse.

After another consultation with my doctor, we both agreed that perhaps I should see a specialist.

After seeking specialist advice and more tests at the hospital, it was found that there was scarring in the urethra (which I maintain was caused when the catheter was pulled out after the kidney operation), and an operation would need to be done to repair the damage.

In 2018, the operation was done and was fairly successful and for a short while, all was back to normal. And then the same problem started once again.

After another trip back to see the Specialist, it was decided that temporarily, I would have to self- dilate on a daily basis with a catheter to help empty my bladder for three weeks.

That turned into daily for a year. After a year (into 2019) I went back to the specialist and he decided I should continue, but on a weekly basis.

After a couple of months, it was obvious that the situation was getting worse again. In fact, I continue to self-dilate on an every other day basis.

So I had more tests and it was found that I didn’t just have one stricture (scarring), but three,

It was then that we discussed the way forward with the specialist, I was given three surgical options.

1)      1) To repair the Urethra – which entailed slicing the penis lengthwise and doing the repair. It would mean 4 operations spread over a year.

2)      2) To have a bypass and wear a bag to collect the urine.

3)       3) Have an operation, whereby they would make a hole in the perineum and they would cut the pipe that runs from the bladder to  the penis and graft it to the skin which would form a new opening and mean that from then on I would have to sit down to go to the toilet.

4)      4) Leave it be and wait six months to make the decision.

We decided to wait for 6 months. And then we had the lockdown and after a telephone consultation with the surgeon, I decided that perhaps, for me, option 3 was going to be the way forward as sooner or later the operation would need to be done.

And that brings us to yesterday and going in to have the operation done.

In the run-up to yesterday, you can imagine how often myself and Debz have talked about what was going to happen. My life would be changed forever.

All along, I’ve been saying I don’t want the operation (for obvious reasons) but I know that I’m going to have to have it sooner or later, so I’d agreed to the date.

I went in yesterday prepared (or so I thought) to have the operation. I met with the anaesthetist who explained what they would be doing.

I met with the surgeon’s assistant who talked me through a separate procedure that was also going to be done (in the same vicinity). He told me the possible side effects and that he felt, I didn’t need to have it done at this moment in time, but I said that if they were going to cut me in the same region anyway that I may as well have that procedure done at the same time and save me having to come in and get it done later.

And about an hour later, the surgeon came in, ran me through what was going to happen but once again reminded me that once the operation was done there could be no going back.

What if the operation wasn’t successful and it the pipe narrowed? Then they would dilate it to widen it again (but it is unlikely that would happen). So I could possibly end up having to do what I’m doing already but with a life-altering operation having been done.

Even knowing this, I signed the consent form.

Why? And this is an important lesson – because I felt that if I didn’t go ahead with it, I’d have taken an operating slot that someone else could have filled and I would have possibly cost the NHS a fortune in wasted time! How stupid a decision was that?

My slot time for the operation was 3.15 – As the time approached, I got undressed and ready to go to the theatre. And 3.15 became 4pm – then 4.30 and I still hadn’t gone down.

At 5 o’clock, the surgeon came in and said, “Bad news.” They would not be able to operate as they had over-run, and while he was willing to stay on to do the operation, he now had no theatre staff to assist him. So, unfortunately, they were going to send me home and we’d have to re-schedule.

Once I got home last night, the events of the day started to play on my mind and I started to feel sick. I really didn’t want to go through with the operation at the moment, because after working on my weight for the last year, I am at the moment, feeling healthier than I have in years.

Had I had the operation, I would now have a three week period wearing a catheter before going back to the hospital to have it removed. Then after three months, I’d have to go back to see the surgeon and see how it was going.

The more I thought about it last night, I realised, that right now, I really don’t want the operation. I’ve been saying it for weeks but justifying having it because I know that someday I may not have a choice.

As the night wore on, my stomach was churning and I realised that mentally, I wasn’t prepared for the operation, and had I allowed it to happen, I could well have woken up this morning regretting my decision, but too late as it would have been done.

I began to think I’d had a lucky escape. But what now? The surgeon told me the booking office would call to rebook as soon as possible, probably for mid-December.

I couldn’t sleep last night, so at around 2-3 o’clock this morning, I wrote my GP a letter, explaining exactly how I felt and why I’d made the decision to have the operation. I told him that I don’t really want the operation now while I’m feeling so well, especially as a year has passed since I’d gone back to the surgeon and had the options explained, and I’m no worse now than I was then. I told him that although I may well need to have it done in the future, I don’t think that for me, now is the time.

I also asked him to call me back.

I emailed the letter to the surgery this morning and by 10am my doctor had phoned me.

We discussed the situation and how the last year has progressed, how I was feeling about it and why I’d progressed toward the operation, and he agreed that I should take the opportunity to call it off, for now, come off the surgeon’s list, and when and if it gets to the stage where I feel like I need to have it done, I can get back on the list then.

He told me that it was fine for me to change my mind, that I wasn’t wasting anyone’s time and that it’s perfectly acceptable for me to postpone it and see how it goes. He agreed that for whatever reason the operation didn’t go ahead yesterday, it was a blessing in disguise.

He is going to write to the surgeon and get me taken off the list until such time as I want or need to go back on it – the operation can always be done another time should it be needed more urgently.

And finally...here’s my point and what I want to share.

If you’re ever booked in for an operation and you’re not 100% happy, don’t agree to going ahead with it. The consequences could be a lifetime of regret. Make sure you know what you want.

I would have gone ahead with it yesterday because I felt obligated to go through with it as I’d agreed. I’d have had it done, even though my mind was telling me to say ‘No’ because I felt that I could have stopped someone else having that spot, because I would have wasted people’s time and the NHS’s money.

My stomach has been telling me “No’” from the very start, but I’ve gone along with it because I was too scared to say, “No”.

If you find yourself in a position like I’ve been in – if you’re less than 100% sure of what to do, get advice, get more information and then do what you feel is right.

I was lucky yesterday. I may end up having to have this operation sometime in the future, but having spoken to my Doctor this morning, I have now done what’s really right for me.

I honestly can’t tell you how different my mental state would have been today had I had that operation yesterday.

I think I dodged a bullet and I hope that if you are feeling about your situation like I was, you’ll make a better choice than I was going to.

Luckily, things conspired to save me from me and making a huge mistake. I sincerely hope that by laying myself open to embarrassment and humiliation here, it helps one person from making that same mistake.

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