FACING UP TO SOME HARD TRUTHS

Post 27 - August 22nd 2023

The time at Camp Green in Ararat was invaluable for me as I move on with this Lewy Body Dementia battle. Living off-grid in a wilderness existence as we did was pretty darn special, Ruth and I braved the elements for 31 days and to be honest, it was rather exhilarating.

And it gave me some understanding to the serenity of Darryl Kerrigan found at Bonnie Doon on that great Aussie classic movie, The Castle.

Ruth and I spent the time being together and living very simply, very cold I will tell, but it was a no frills stay that we took head-on and loved. Being at Green Hill Lake camping out was taxing in part but so rewarding.

The comforts of home were generally scarce. We had to improvise and that meant being a touch rough at times and going without some creature comforts like power, heating, regular hot showers, running water, a toilet we could flush, clean clothing every day and a few other things we would normally take for granted.

But we adapted quickly and did make the most of some modern-day camping gadgets like solar panels and a battery to charge the electronic devices. And when the sun stayed hidden behind the clouds all day, oops, dare I admit, Macca's took up the slack and we sat in-house to use their power and wi-fi while we drank coffee from the McCafe Bar.

And ice for the esky to store the perishables, that helped. Oh, and gas, bottled gas and propane cylinders for the burners, yeah, that really helped with cooking etc. We ate different, we ate well but it was definitely basic stuff.

However, we embraced the challenge and coped ok. The weather was cold but generally favorable, very little rain and/or wind, we managed some doozie bon-fires for warmth and I lost count of the hot water bottles I filled for Ruth using billy water boiled on the fire.

Now, sure, we had a few road trips away from camp. Racing at Ballarat and Bendigo and footy at Kardinia Park, a great day trip to Ballarat with friends for lunch and an overnight jaunt to be with family in Pyramid Hill. So, yeah, life was happening in the background as we embraced the wilderness, but it was really a low-key existence over the 31 days.

And for me it was a chance to go chill out, far away from home base and to have the opportunity to just be safe but alone in thought and contemplate what really lies ahead.

Here I go again in saying I am going good with this LBD journey in most areas, yet in some areas I am really battling. I am depressed in that I am having a hard time staying positive.

Generally, I do copy pretty well I think but underneath, deep down I am having some crap moments, some moments that end in tears and yeah, self-pity. I am struggling to stay afloat at these times. The future with LBD is of course unknown, this will always end bad but how long that bad takes to kick in is the mystery. So, we simply continue the journey, it is far from over yet.

Unfortunately, health in a couple of other areas is not going so well. Pain is a constant companion at the minute, and that does get to be very taxing both physically and mentally. Also, my body is not moving the fluid around as it should and despite some regular medication to assist with passing the fluid that is not working very well. I am retaining much more fluid than I should and my feet and hands are swollen which adds to the pain.

And sadly, to further complicate matters, I had a bladder tumor that will require another operation. Yeah, really, that bothers the crap out of me. It is just 6 weeks to the day since I had an operation at Flinders Medical Centre to remove a growth from the bladder, that was done successfully but a biopsy revealed the tumor to be a stage two cancer that now requires a further go under the knife.

The tumor removed was 3cm and high-grade cancer but now the urology team think it has grown into the muscle of the bladder wall so that means this extra surgery. I have had to wait 6-weeks between the ops to give the bladder time to heal from the first cut so now I await confirmation of having to go back into Flinders for the next stage of this process.

And for the record, that will be op number 4 since January and that too bothers me. Not the cancer bit, or the pain bit, I am in an ok spot with that in essence, but the LBD can cause grief when anesthetic is required, and I know I have battled with that in the past.

It really is embarrassing for me; I do not deal well with knowing that I am in a state of total confusion when coming out of the anesthetic. Yeah, it gets to me, haunts me in fact. The LBD can simply exacerbate the problem of confusion at that time.

So, while my depression is not new, far from it, no, it is the thought of the awkward time ahead that is doing my head in. I am struggling to face what comes next.

Being at Camp Green for the month and a bit was probably me taking time to hide away, taking time to fudge life by really dropping out of society and allowing myself to be out of sight, out of mind. I was able to just pretend all was ok. That works for some part, but it has limitations, it is actually not  realistic to think and act that way long-term. I mean, you do have to face up to the problems sooner or later.

As said, I do not look forward to the next op and what it might mean.

And then there was the Mitchell issue for me, he would have turned 21 on August 15th so my personal emotional battle around that date took a toll. Losing my boys back in 2014 was tough and the milestone moments are naturally very awkward.

Now, that aside, the time in Ararat was very much perfect in other areas, I would score the stay at about 95 out of 100 in terms of what I took from the time. It really was fun and the depression aside, being away from life for a period had so many benefits. Despite feeling depressed, I was able to embrace the tranquility and solitude of our camp and was then able to take from that all it had to offer. It was difficult to pack up and leave.

And I met Bill, a local rough diamond who came to visit our camp a number of times. He supplied us with wood and that was massive with help on the bonfire front. He was a real blessing, oh, and he was a Cats supporter, so we had some good footy chats.

The LBD was an issue in part, I did have some funny and rather dramatic moments but hey, nothing too serious and it did give Ruth and I many laughs. I had my usual funny faux pas with what I would say and do but thankfully nothing out of the ordinary happened. As said, just things that gave us a decent laugh.

Now, a small downer, something that has become awkward is the number of falls I have. I can trip, stumble, fall, wobble, stagger at any time and because I am hitting the deck so often it takes a toll on the body. I am sore, very sore where I seem to continually land when I go down. Sore knees, sore hands and wrist where I attempt to break the fall, sore arms, sometimes I do hit my head, so I have a few marks and grazings and some bruising.

Ruth counted the falls at the camp site, and she totaled 21, yeah well, I admit that is the ones she knows about. We did have many laughs about the actual score with the falls, it just added to the fun of the time spent living in the wilderness. The falls, nothing serious, just awkward moments that thankfully never amounted to anything too drastic other than the few scrapes and bruises as mentioned.

I do understand it is a bit of a worry as to what this falling issue is all about. To be honest, I have no bloody idea why I am going down so often, I can only think I am becoming clumsy. Medically, is there something more sinister as a reason, I don't know, and I guess I really don't want to know.

What will be, will be.

Ok, there you have it. Once again, a little bit deep here with this post, but by writing about my LBD journey it really does help with how I'm travelling. I get to let my feeling and thoughts have some validity and I see that as positive. I gain strength from writing this blog.

Thanks for reading, really appreciate you checking-in. Over 13,000 views to the blog at the time of writing this.

Footy, mmmmmmmm, no September action for the reigning premier, we had an ordinary season in 2023 and it has been a hard watch at times ... but, I keep the faith, Go Cats ...

And as I do, I end this post with a JonnyG funny ... well, this one is really for Ruth, she will get it and I know she will piddle herself laughing at this, she always loves a good old fashioned Dad joke ...

Did you hear that the garbage truck driver looks sad? ... Yeah, he's wheelie bin depressed ...