SOMETIMES EWE JUST HAVE TO SIT BACK AND TAKE STOCK

Post 41 - March 7th 2024

Time to move on. After seven plus months at Camp Bunyip in Murray Bridge the Hall/Green train rolls out and heads off to forge a new beginning. First stop, Houghton in the hills of the Eastern burbs of Adelaide to house sit a sheep station for a month before the journey takes yet another turn and we hit the road.

And the irony of the sheep station is not lost on me. In life, I guess it's fair to say I have always been the black sheep of the family. Now, I'm probably the lost sheep, I have drifted away from family to became somewhat estranged. And that's my doing, I own that.

So, finding isolation and sheep farming for a month, maybe here I can find myself, or maybe not. I am lost, I am struggling to find a way through all the challenges being thrown my way. Awkward days. Not sure that mentally if I can find my mojo to get back into the flock.

With my health issues becoming rather troublesome then our plan is to simply make the best of whatever time we have.

After our month stay here in Houghton, we will do what we want. Travel, explore, enjoy, simply follow the dream and go do something different. The plan is to spend at least six months off the beaten track and live off grid, be self-sufficient and simply live a simple life. And live that life our way. First stop, Green Hill Lake at Ararat.

For me, I have lost interest in being a participant, I am happy to be out of sight, out of mind. My life loves have deserted me, I have little interest it seems. Guessing I am headed down the recluse path, but for me right now, that sounds like the way to go. I do not have the energy or mindset to engage with others, I just wish to be in my own company.

Off grid living at Ararat will facilitate that. 

My Lewy Body Dementia journey is in fast forward at the minute. The cognitive decline happening right in front of my eyes is awkward to watch. Awkward to live, awkward to be a part of. I am coming apart mentally and I am not liking what I see. 

On the Wednesday before Easter I went into hospital to have a medical procedure where a drain was inserted into my backside to drain infected fluid that had settled in my pelvis area. My last major surgery back in November had included having numerous lymph nodes removed from that area and over a three-month period the fluid built up and became a problem.

Pain from the infected fluid was severe, all day every day and it was sort of debilitating. And as an added bummer, dealing with this ongoing pain meant my mind became rattled, I struggled to get my cognitive issue under control. The LBD was noticeably worse, certainly from my personal perspective. I was sort of falling apart mentally right in front of my own eyes and that did impact enormously on my level of depression.

But, the results of this latest hospital stay have been so darn good around physical pain, because 11 days later and I am all but pain free. The infected fluid was drained off over 8 days and with that gone then I feel physically better, much better. I really do hope that being this pain free will now give my troubled mind a chance to allow me to be better equipped to handle the cognitive decline.

Because the flip side of being pain free is that the drain procedure did not come without physical and mental issues. I was admitted to Flinders Medical Centre and then taken to have scans of the area that carried the infection. The procedure was performed under a local anesthetic administered to my butt/rump area and what was a 15 to 20 minute procedure began.

Some complications padded that time out to one hour and for the record, it was darn painful, to be real, for me traumatically painful.

A large needle is inserted into my butt and then a drain is pushed along the needle into the fluid buildup area, but some blockages along the way meant it took two goes for the medical team to get it right. Halfway through I was given more local pain relief and while that clearly worked in stopping the pain, I was still able to feel all the pushing and prodding to get the drain into the right place.

Seriously, it did affect me big time, with my LBD issues then my mind did not cope, I was really struggling with what was happening. I later found out the needle and then drain went 15cm into my butt. No wonder it was so sore. And once back on Ward 6C then the pain just got worse as the local anesthetic started to wear off.

My LBD was such that I became very unsettled by what had gone down. Confusion was very evident; I was battling to stay on track in my mind. The hospital stay was three nights and four days, I had some ok moments of course but cognitively I did not do well. Talking to myself, shaking, confused, rattled, it was a funny time.

And of course, hospitals are the worse place to be sick. Constant observations, noise, rowdy patients and their visitors make for an awkward setting at the best of times.

I was also fed a high dose of antibiotics through a drip to help fight infection. That meant I was always on the nurse radar, changes to the drip, fluid flush for the antibiotic drip line as well as regular fluid flush to the drain in my bum. I was left to drain and clean my own pee bag and to look after the night pee bag, hey, that suited fine.

The positioning of the backside drain and attached tap meant I could not lay on my left side at all, so sleep was generally spasmodic, even sitting in a nice soft chair was a challenge. 

Ruth spent each day with me on the ward, that helped of course because it meant I was in familiar company. When I get a touch confused or disorientated then knowing Ruth is close really does help enormously.  

Because I was classed as independent then I could shower without help from a nurse, so Ruth was able to assist.

Yeah, having Ruth on the ward was a big plus, she stayed close, even used my bed for rest and ate lots of hospital food. Because I am off the coffee at the minute, then the smoko rounds went in her favour as well, she was able to get her cups of tea throughout the day. At night when Ruth was gone was a tougher time, look, the nursing staff mostly do a great job but at times, they can be very trying. Unfortunately, not all nurses are a good fit for this demanding job. 

Once discharged from hospital I was under the care of the Murray Bridge district nurse for four more days, that went fine and then on day eight the drain was finally removed.

And of course, this fluid drain and procedure is as a result of my bladder cancer. The lymph node removal has messed with the lymphatic system in the groin/pelvis area resulting in this infection and fluid collection. In all, there was over 700ml drained in the eight days. But as alluded to earlier in the post, the pain caused by the infected fluid buildup is now gone, that is such a relief.

And for now, all scans on my body have shown that I am clear of any other areas where the cancer has taken hold. Maybe one lymph node mass is a potential problem, but the Flinders Urology team seem to think it is nothing too sinister at this point. I will undergo my next scan in three months.

But on a minor downside, a Thursday appointment with my GP had a very tense and awkward moment. As we were discussing possible issues in the two-year time frame for cancer returning, my GP looked me directly in the eye and said, "Do you want me to be blunt? Well, your cancer will be back within two years."

Wow, blunt it was. It did stun me and as she explained how things may play out, I had nothing to say, I mean, what could I say. Look, I know the odds of having trouble going forward sits at 50/50, I also know that with my bladder cancer there is a decent chance it will return, but for now, that is something not to be concerned with. Maybe the GP is right, maybe not.

Nope, reckon I will roll the dice and maybe if I get fortunate, I can say to the GP one day that it all ended ok. Because I always have Baa-haa in my vocabulary.

Anyhow, that will do for now, another post written. Bit sooky and a bit self-centered.

And yeah, has a feel of 'poor John', I know, always something to whine about. But for as much as that looks true, my sole personal motive for writing this blog and adding posts is to help me. First, it allows me to express my thoughts through my writing and it has the added benefit, again for me, of recording this LBD journey. It allows me to use my writing as a really good, and sometimes positive way, of tracking how I am doing both mentally and physically.

And hey, I do appreciate all of you who read and follow the JonnyG Remembers blog. With 23,500 views then thanks to everyone who has checked in.

Sadly, no JonnyG funny for this post, but for the record, I do notice the Cats are 4 from 4 ...

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Rolling out of Camp Bunyip on Saturday and heading east ... caravan in store, trailer loaded, let's roll team ...

First stop in the east, Houghton and the sheep station, home for the next four weeks ... sheep, chooks, bees, apples, this place just keeps on giving ... lucky to get the chance, thanks to Geoff and Suzanne, enjoy your time o/s ...

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