HOKEY POKEY OKEY DOKEY

Post 32 - Wednesday October 18th 2023

You put your left foot wherever it wants to go

You put your right foot in a different spot

You do the hokey pokey

And you turn around

And hope you don't fall down

And that folks is a rap … well, maybe not but as my Lewy Body Dementia journey continues then life moves from the normal narrative and becomes a serious of adjustments in any given moment. Adjustments to make it look as if I actually know what I'm doing.

It can be fun, lots of fun but yeah, it is challenging. And really, the Hokey Pokey has nothing on me, I am one foot here, one foot there, turn, spin, another foot to the left, wow, this is some dance I am on.

My mind and my body are growing apart. As my cognitive decline rolls on then at times I am losing my way with my mind and that is somewhat awkward as it equates to losing control. I don't do that well, because in my mind if I feel like I am in some form of personal control then things are so much more manageable.

So yeah, fun times and challenging times.

Keeping control for me in my mind has become so important. For now, even though I know I have messed up with something I might be doing, as long as I can fudge the result to look as if I am ok then I get out of that situation in an ok spot. I simply need to feel like I know what I'm doing.

That is very important to me. And I guess it shows I am actually doing alright because I still have the smarts to understand what it is I am doing. I will take that as a positive.

With the new blah blah language I wrote about in a previous blog post and now coupled with my new 'Hokey Pokey' dance mentality then I am in a decent spot. This means I have a lot of the life bases covered. 

But, I am prone to falls, that can be hard to cover at times. With my left foot in, my right foot some other place then my balance is tested so I need to be ready for the Hokey Pokey dance. By making a few twists and turns, putting one foot here, one foot there I seem to be ok, generally I can stay on my feet. Yeah, seriously, that's what it's all about.

Now, hokey pokey moments aside, it seems I am going to need all those life talents, dance moves and tricks of the mind to get me through an awkward stage.

Because outside of my LBD problems, life is presenting as downright difficult.

My bladder cancer battle that actually first started in 1998 when I had a tumor removed at the Royal Adelaide Hospital is about to take a rather sinister turn. Yesterday during a specialist appointment at Flinders Medical Center, I had it confirmed that the bladder cancer was now at a stage where it becomes life or death.

I have had four different surgeries this year so while the time had been painful and awkward, it was never really an understanding that the final diagnosis would be this harsh. 

Over the 25-years since that first surgery my bladder tumor has returned a number of times but by removing it as it appeared, then I have been able to overcome any setbacks fairly easily. Good ongoing health practice has meant each tumor was quickly discovered and removed without it being any more than a speedbump type setback.

But, sadly this time the bladder wall has been invaded by the tumor and the cancer may well have spread into other areas of my body. At this point all scans and tests show the cancer is restricted to the bladder but time will tell what may be lurking in other organs and not yet detectable.

Yeah, for now, I am faced with a dilemma. A very crap dilemma.

The cancer has become aggressive in my bladder and left untreated then I am told 12-months is all I have. By then the cancer will move around inside me and manifest in other organs. That is what bladder cancer does.

So, option one is to do nothing and face a painful and very messy death.

I have an option of radiation treatment but that was not high on the recommendation list. It would only give me a 5% chance of beating the cancer and the residual effects from radiation on the body are not nice. Side effects are painful and many, so that would be a tough option.

So, that leaves option three, or maybe it is actually option one.

I would need to have my bladder removed and live with a pee bag. If the cancer is contained to the bladder and hasn't moved out, then I am told I could be ok. No guarantee but likely that I will come out the other side and move on.

Statistics show that one in three patients who have the bladder removed get a further cancer within two years. Not good odds but that problem if it presents can be dealt with down the track.

The surgery to remove the bladder is 4 to 6 hours, a 10+ day hospital stay follows and then a long recovery is needed. But it looks like the best option.

Well, medically it does. Mentally, I have no idea, but I do I figure I would not cope well with a pee bag. I am sure many have and many do cope but with as my thinking is 'off with the fairies' at times with LBD, then I have my doubts about coping in any shape or form. Once, it would not have been an issue for me full stop, the bag would have just been awkward and nothing more. Now, I am thinking this will get messy.

So, if I go with option three then maybe all my cognitive issues are about to get worse. With the LBD, I am told the length of time under anesthetic for this surgery may well hurry on my symptoms and the cognitive issues became very awkward. That is a medical fact.

The urologist who would do my surgery told of a gent that he recently performed this same operation on. That bloke had some mild dementia, but now, post-surgery that dementia has progressed rather quickly, and the man is in fact confined to a home as a result. The urologist was mortified that he had performed a potential lifesaving bladder removal on this guy but had plunged him into a cognitive state that had taken the life out of the man anyhow. I felt for the urologist, he was clearly upset.

So, risk v benefit.

For me, I have no idea, for the urologist he will be hoping I don't end up like the other poor gent he mentioned to Ruth and I.

But, for as crap as all that sounds, I have saved the positive news to last. The urologist told me that he can guarantee that I will drop 10kg after surgery as I recover. That would almost get me back to my riding weight as a jockey so maybe I can yet ride a race day winner for my Vic Husslers ownership group. Wow, winner winner chicken dinner.

Anyhow, there you have it, my news is a bit disappointing.

But, for all of that, for now, I am all done for another post.

Tough times ahead it seems for this 68-year-old bloke and no decision yet made on what option I might take with the bladder cancer. Tough on a number of fronts but for now I will head off and put my left foot in, put my left foot out, do the hokey pokey and try not to put my back out.

And importantly pray that this turns around, because that's what it's all about.

Go Cats.

My JonnyG funny for this post is slightly different. Ruth would testify that I am such a romantic poet, my 'roses and red, violets are blue' poems simply rock. So, despite that, I will not share a 'Ruth' poem today, but instead I will call on my arty farty talents and pen a Shakespearean take on the Hokey Pokey ...

O proud left foot, that ventures quick within, then soon upon a backward journey lithe. Anon once more the gesture, then begins. The Hoke, The Poke - banish now thy doubt, Verily, I say, 'tis what it's all about ...