IF LIFE SERVES UP LEMONS THEN MAKE LEMONADE

Post 25 July 9th 2023

Time to have a sook. Time to reflect on how awkward life could be at times and yeah, time for some self-reflection and to understand that things can be tough. Because sometimes, not always, but sometimes it's just easier to be a sook. 

This journey I am on with Lewy Body Dementia has a number of challengers of course. Overall, it is not so bad, it is testing but also comes with many laughs and the good times in life for the most part just continue. The end result, well, not looking ahead to that for now because along the way it will play out how it plays out.

Now, medically this is also a very testing time. Tomorrow, I head to Flinders Medical Centre for my third surgery this year. 

Being unwell is no drama for me, I tend to move through most bouts of being crook and come out the other side in a decent spot. I have a good pain tolerance and I take things like surgery as a part of life. Even the dreaded and almost deadly Man Flu is dealt with in an ok manner. I mean, what else can you do.

So, tomorrow, I am having a tumor removed from my bladder, it is likely to be a cancer. I first had this issue way back in 1998 and over the years the cancer has returned three times. Yeah, this is almost old hat. My last bladder surgery was in March 2020.

The op is awkward, the tumor is surgically removed through the penis, yeah, ouch. Ok, I will be 'out to it' on the operating table and thankfully won't feel a thing.

Afterwards, not so lucky, experience has taught me the pain and discomfort is at best ordinary.

You wake up in the recovery ward with a catheter inserted to drain the piddle, that is not a good thought. Later when it is removed hopefully around midnight or early next day the pain is again, mmmmm, ordinary. In fact, I will need to sit to pee for a few days as I get used to letting the pee out, very gently I will add, through a rather sore penis I will also add.

But, I do have some fear around the surgery tomorrow. And it's not pain.

The LBD issue messes with my cognitive thinking, it makes confusion an often constant companion. I do get used to that and as I point out in other posts, I have devised some very useful strategies to help me through the confused moments.

Having this op naturally requires anesthetic and that can really muck up the mind as it adds a different confusion level to where I am now generally at. Sure, any time a person has anesthetic for an operation it can be a confusing time when coming around after that op. Different people respond in different ways it seems.

The LBD though can add to what happens as the anesthetic starts to wear off. I had a bad experience after an op earlier this year and from that I am now mindful that people with dementia can generally be adversely affected by the anesthetic. It can be a problem in the short term, but it can also bring on a new level of confusion going forward,

That is my worry. Having LBD and being able to cope is manageable. Having that LBD suddenly get a real hold to hurry the process along is frightful.

For tomorrow, the staff at Flinders are well aware of my issue and I know they will all help to minimise the impact for me on the day. For that I am very grateful. The staff are always very good with the help and support they give to both Ruth and I.

And it should just be an overnight stay in Flinders meaning the time in hospital is minimal.

So, this op tomorrow should go ok, been here before as said and I am understanding the procedure.

But this time around it somehow feels, looks and sounds different. Not really sure how to express 'different' other than the wording I am hearing from the medical clinicians does sound different. They appear to me to be programming my thoughts to expect an awkward diagnosis and outcome.

Now, maybe that is just me, maybe I am just being sensitive as I deal with how the mind is changing with the LBD. Don't really know.

But here I need to add some background on how the bladder growth was discovered.

This tumor hasn't followed past experiences for when the growth has returned. Normally I know it is back. But this time I had no warning, an ultrasound in February for an unrelated issue showed some mass in my bladder that needed to be followed up.

Sadly, that did not happen, in fact my GP totally missed the report from Flinders for that ultrasound and it was only a few weeks later when Ruth received a copy of that same report after asking for it that she read through and noticed there was a follow-up needed. And given my history of bladder cancer then Ruth knew things were not right.

She had our GP look at the report and from there things happened quickly. A follow-up ultrasound was organised and that showed the growth was in my bladder. Then in two days it progressed it seemed from the report mentioning an issue to the urology department at Flinders delivering the news my tumor was back.

It was disappointing to hear that news over the phone, in fact Ruth and I had just arrived in the carpark at the Balaklava races where we had gone to watch our horse run. I will admit to being stunned when the news was delivered that morning, it was not what I was expecting at all. Far from it.

And from that morning I have not really been able to get my head around how this has played out. From here the clinicians seem to be in some form of damage control, not sure if that is truth but it is how I feel. And it seems to me that this progressed a little too quick.

Not sure what happens now. I feel like we are left in limbo.

Ruth has asked a Flinders Urologist if it was a possibility I would need Chemo going forward, the reply was maybe, maybe not. When asking about the size of the tumor the response is different depending on who is giving the answer. One clinician who looked over a scan I had on the bladder a couple of weeks back said that the growth looks small, the next time we asked a week or two later when having a pre-op assessment, the answer was the growth is big. 

Take that for what it is, no drama really. But as I suggested, I feel the wording is different this time when asking what this tumor is about. It seems hard to get a definitive answer. 

Now, as said, medically I don't really get fazed when in this position and despite the changing tone from the clinicians I am not really stressed about the tumor and/or the cancer. It is what happens next that gets to me. If that means Chemo, then so be it but what would that in turn do to my cognitive decline? Would that speed up my LBD issues? Not sure.

But the circumstances surrounding this tumor and operation do bug me and that has a massive impact on my psyche. It really is messing with me.

Added to the concern for tomorrow surrounds what will happen in my mind. That is definitely my big concern.

Yeah, you see, while I am able to keep a handle on the LBD it is ok, if I lose control for me, then that is a thought I try not to visit. I am scared of that thought. Really scared, I am not ready to lose control. Bummer.

So, really, from that morning when pulling up at Balaklava races when I had the phone call from urology through to now, this has all be a rather complicated and awkward few weeks.

And to further do my head in, that darn horse of ours runs again at Murray Bridge on Wednesday and I am wanting to be there. Go you good thing. Sure, first things first, one step at a time, I get that but if all goes well tomorrow at Flinders, then maybe I am a chance to be trackside on Wednesday. And if I get to the Bridge and the phone rings, I just won't answer it. 

Ok, that's my sook, thanks for reading. 

Go Cats.

But for now, let's get this post finished by adding a JonnyG funny. This is NOT something I am wanting to hear from my anesthetist when on the table at Flinders in the morning ...

Anesthetist: Relax William, it's just a small needle, don't panic ...

Me: But doc, my name is not William ...

Anesthetist: I know, I'm just talking to myself