SURGERY AND MENTAL HEALTH

Post 36 - December 19th 2023

Writing about my Lewy Body Dementia journey has been such a blessing. We all know this doesn't end well but to this point I reckon I have been chugging along doing ok. In fact, I'm doing very ok.

But living this journey has probably been a lot different to how it seems, I mean, I know of the cognitive changes within my own mind but thankfully I have the smarts still to disguise most of the symptoms.

It seems many of the people who I interreact with don't fully understand what is really happening and that for me is a good point. This is a private battle and despite my very public JonnyG Blog tracking my journey, I do try to keep lots of things as hidden as I possibly can. Things that are maybe embarrassing and/or personal to me and things that are really, dare I say, silly. 

For that said, I love that others are on board for the ride, and I am so thankful to everyone who is taking this adventure with me. I don't deliberately hide anything when writing my blog posts but there are things I don't share for my own sanity. 

Writing this blog has always been to record my LBD journey, it is trying to show how this looks from the inside. So, while it is written as honestly as I can do, it is still a touch guarded in some areas.

So, I am lucky, life is going ok allowing for the personal cognitive change that I can see happening. I mean, Ruth and I still continue to have fun, take our road trips and generally have a decent time in life without letting the LBD stand in the way. So far so good.

This recent surgery has slowed the journey, the past 21-days have been extremely tough and working through the body changes, the pain and general discomfort has been very confronting. But I do see this as just road bump, with my new pee bag and associated health issues it has changed life, yet I know I will come out the other side in a decent spot. 

Now it's a time thing with recovery, no quick fix. This has knocked me for a six, I am battling physically, the pain is on-going and for the most part severe. Mentally, I am shot, I am having trouble staying focused, my concentration is problematical and staying in the game is very much tested.

But my LBD does not seem to have taken a hit. If anything, I am travelling pretty good, the cognitive changes have been around a while, meaning they are clearly noticeable but not new. So really, in my thinking this has all been ok around the LBD. On that point, I am extremely surprised how little effect this has had on my cognitive issue, to admit to saying I was scared is no understatement, I really did freak that my mind would change even more and at a quicker rate.

For that said, emotionally though, the surgery is having a decent impact. I mentioned being shot mentally, that is hard to navigate around. Depression is close at hand.

Look, I knew this would not be easy, recovery was always going to be tough. I had an 8-hour surgery, they removed my bladder, prostate, urethra and my appendix to take the cancer out as well as numerous lymph nodes so yeah, my body took a fair hit, lots of shock and trauma inside.

And my bowel was cut so as to use a part of it to make my new pee bag connector, so my bowel movements are erratic and painful to say the least.

In my private moments it is difficult to cope. And I mean really difficult, all my bravado seems lost.

As said, concentration and focus is at times impossible. The constant pain means I use all my energy and thought power simply to function. And with the organs removed then the changes for my life are profound. That clearly impacts on my mental state.

Not the awkward cosmetic changes like having a pee bag, I have a hole in my stomach and a bag is attached and that is how I pee. It looks crap, it is difficult for me to look at but seriously I am not one who dwells on appearance, so in that sense of the cosmetic look it is really nothing at all.

But naturally it is not the look of choice. And with my prostate and urethra gone then my manhood went with it. Yeah, nothing like over sharing but that is a fact. Not sure how I will cope, this change alone is just a massive hit. My penis is now obsolete, and all feeling is gone so if you will pardon the pun, this is huge. It all means I cannot wee and yeah, well, the rest is left to your imagination. But mentally, this will take some time to sink in. 

To be totally honest, I am not sure what I think. The tears are plenty, I know I am not a feel sorry for yourself type of bloke but gee, this does test the mental capacity in a massive way. Yeah, the pain is just horrendous, the inability to concentrate and focus is horrible and while I am doing as well as I can, it does take so much energy to keep my mind at a level balance.

Another area affected is that my taste buds are way off, it is very odd, and I have no desire really to eat. Custard and ice cream are ok, my diet is very liquid, I manage some fruit, banana, strawberries and blackberries but not much else.

And my love for coffee is totally gone, I cannot taste it so I have stopped drinking, at the minute iced milo is my go-to drink. Hopefully, the taste buds get back to something like normal in time, I miss my food. And I miss my coffee.

Ruth is my Florence Nightingale, she tolerates my awkwardness and complaining, she is always right there, and her dedication is definitely not lost on me. Her ability to nurse me through this is profound on my personal psyche and in these tough personal times it means I have someone who has my back. Totally. She does everything.

From organising my daily meds to changing my pee bag, yeah, Ruth is the PA with all the help. I am having a daily blood thinner injection, and she even delivers that to my gut. I mean I cringe knowing my needle phobia but Ruth deals with that and looks after my sooks at needle time.

Yeah, she is the jack of all trades at the minute. She even has to be her own tea lady! And I mean she is the work horse, so get this, we are house sitting in Aldinga at the moment and on Sunday night, it was wheelie bin night, so, Ruth became the wheelie bin girl, now that is dedication. But Ruth, that is a job I want back so don't get too comfortable as the wheelie bin girl.

Well, that's another blog post written, bit heavy and not lots of fun but one of genuine feeling. Thanks for reading.

And as normal, I will leave you with a JonnyG funny ...

Ruth, did you know that there is no official training to drive a garbage truck and to be a wheelie bin collector ... nope, they just pick it up as they go 

Flinders Medical Centre for surgery, 11 days on the wards, ICU, High Dependency and finally 6C ... the staff help, support and care was amazing, absolutely superb, just the best, a tough stay but made just that bit easier with the great personal care, thank-you FMC staff ... and how about this, because of my high anxiety and PTSD issues the surgery and anesthetic teams allowed Ruth to gown up and spend time in the holding bay pre-surgery and then come with me into surgery, Ruth was allowed to stay in the theatre until I went to sleep ... so to both the teams, wow, you guys were so understanding and supportive and it really helped in the tough moments, I/we cannot thank-you enough, we are blessed  ... and Ablett Bear was a part of the hospital time, he was always close by, Go Cats ... Tom, my urologist surgeon (with Michael) and Doctor Evie helped me through in the post op time, two outstanding people, not just blessed with great surgical skills but they were so so supportive, made the tough times manageable ...

On day 3 of Post-op I had a nasty AF episode and it quickly turned awkward for me ... my agitation, my involuntary shakes and stress levels were off the chart, every sense I have in me was heightened, I struggled to breathe, I was burning up from inside and my heart rate was through the roof ... yeah, that was scary but the great nursing teams at Flinders came together and managed the incident ... it really felt like the heart attack time all over again, a tough moment during a tough time

A couple of notes from my post-op discharge sheet ... bit sad for me to read but grateful that I get the best care and medical help ... I am so blessed

Meet Tom, my urology surgeon, what a guy ... he is clearly a skillful surgeon and together with Michael and the team at Flinders my surgery is a success ... but Tom, he is so much more than a surgical guru, he is such a gem, so friendly, so genuine and just a good bloke ... his care and bed side manner are exemplary, nothing is too much for him, yeah, just the best ... and as I was being prepped on the operating table in theatre he even let me pick the music that would accompany my surgery, we settled on The Boss, Bruce Springstein, now not sure how long Bruce played that day but it was a very special touch from Tom ... for Ruth and I, it feels like Tom is a friend, he gives his all and his contact with us has been ongoing, he calls and chats about anything we need to know and anything that is a medical concern, that made such a big difference ... Tom, thank-you