THANK YOU TO THOSE WHO CARE

Post 40 - March 24th 2024

Over the past few weeks, I have had good people message me to check that I was doing ok. It has been a tough time personally and really, I have not responded well to those who genuinely care about me. For that I am sorry. But seriously, in my defense, I have so little to give in terms of how I'm doing medically, and it has been, dare I say, impossible over time to find any motivation to reply to those messages. I know I should be responding, but I am lost and just don't have the oomph to do so.

Physically and mentally, I am really shot. My Lewy Body Dementia journey coupled with this barrage of physical health problems has rendered me useless. I have lost interest in the things that interest me, I have rolled over with the pain and discomfort and let the Black Dog crush my very being. Life has really become lost in my battle and each long day just seems to roll into the next.

So, to those who care, thanks for hanging in with me. 

Where this all ends is problematical, we know the LBD journey ends bad, the cancer and associated health problems just give no respite. Pain is almost constant; it has become entrenched and my battle to stay afloat mentally is really challenging.

I find myself house bound and for days on end, so much so that I do not even venture outside. I have spent the last month in particular on my bed, sleeping or resting. The pain and discomfort coupled with fatigue and some confusion means I have no energy or desire to participate.

Hospital visits, scans, specialist appointments, blood and urine tests have all shown I am in a tough spot medically. The removal of lymph nodes during my last major surgery in November have created another set of problems, not only am I carrying excess fluid, but it has become infected around my groin area and the pain just gets worse. My man parts are inflamed, rather tender and swollen so this coupled with the bladder removal, prostate removal, urethra removal and appendix removal means the infection adds so much to what is already a crap time physically.

And this pee bag sucks, that is very hard to entertain.

The results from the last round of hospital scans will be available on Monday so that will indicate if the cancer has shown up in any new areas. There is no indication either way at this point according to the Flinders urology team.

And now, blood tests show that apparently my body is fighting a significant infection, so I guess that explains the constant fatigue. 

This week I will be back in hospital for another four or five days. I need to have a drain inserted into my groin to try and clear the buildup of infection. The drain is placed in my groin under a local anesthetic/scan procedure and then the hospital stay on a ward will allow the infection to be drained over a few days while a strong course of antibiotics will try and prevent a further infection.

It all sounds painful and rather tricky. No fun. And this means Easter 2024 will be on Ward 6C at Flinders Medical Centre. (Please send chocolate eggs and stuff)

So, this week, sadly, for me personally, I have lots to face again physically and mentally.

And the LBD has really taken on a much more defined role, I am exhibiting some awkward signs in this area and unless that can be changed then I'm thinking it is not a good spot to be in. I am worried about the cognitive decline; I see it happening right in front of me. I know that in the end the LBD will take any cognitive smarts that I have, it will get messy and the symptoms as I understand them will render me useless.

Right now, in the present, battling the pain does mean I have little mental capacity to fend off the LBD symptoms. Depression is rife, life has lost its meaning. It gives me an insight into how this all ends, that is a scary thought.

But, going forward I do really hope that if this pain can be fixed then I can focus better on the cognitive issues. It seems that this fluid infection I carry can be fixed, once I get through this hospital stay this week then my body will feel much better. Hopefully, that means I will get stronger physically and in turn that will allow my mind to heal mentally, and I can, as said, focus better cognitively.

Writing this blog post has been tough.

I don't feel inclined in the least to be thinking about what to write. But I am hoping by making myself take the time to write it will help my mental state, I am hoping it helps me focus a little on what life is meant to be like. Because at the moment, sadly I just don't care.

Writing is one of my lifelong joys and generally it's a source of great enjoyment. Sadly, right now however, it is a chore of epic proportions. Because as said, I have very little life interest, each day is just pain and rest, rest and pain.

I mean, it's footy season as example but my interest is negated by how my mental state is behaving. That mental state has become so darn invasive. Racing and my horses is another love that has now become a thing of the past. I just cannot fire up; my interest is nil. Going out in public is not possible, I am so darn tired and sore all the time, it is such an effort to get moving, so I stay indoors. Even Facebook catch-ups with friends, or my community and sporting groups are non-existent, I am losing touch with everything that is dear to me.

My taste buds are still way off, and I mean way off, food is definitely not my friend, that sucks. I can handle some light eating but nothing much. My desire to drink coffee still deserts me. But, the upside side is I have dropped 14kg.

So, if you have read all this post, thank-you. I am hoping it helps explain why I have folded and become very distant to those I really care about. And seriously, for that, I am sorry, really really sorry.

As I do say in my LBD journey posts that get a bit deep and meaningful, this is not a cry for help, far from it. No, it is about me explaining where I am at this minute and hopefully you can all understand I am doing it tough mentally, and physically. And that means I have become distant and reclusive.

Ok, that's it for now. Struggling to find anything funny to finish with, so somehow, for this post, I just have to remember this ...

It's not whether you get knocked down; it's whether you get up ...

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This is my friend Chris Barker, sadly he was killed when hit from behind by a road train as he cycled across the Nullabour on Thursday morning, he was 160km west of the SA border ... Chris lived at Victor Harbour here in SA with his family, he was an ultramarathon cyclist doing what he loved to do, cycle around this big country ... his accident came as a massive shock to family and his many friends, he was just a really decent and inspirational bloke ... Chris has been through a lot in life, he battled depression for many years but somehow always managed to use his bike riding as a positive way to stay as balanced in life as possible ... the top pic is one he posted to Facebook late on Wednesday evening, a few hours later tragedy struck and Chris is now gone ... RIP mate, you will be missed by so many ...

And in a further sad twist to this story, a 36-year-old road train driver has been charged with manslaughter over the accident that killed Chris ...