EMOTIONAL COMPLEXITIES OF PROSTATE REMOVAL 

Post 50 - Thursday September 26th 2024

Prostate cancer in Australia accounts for almost 16% of all new diagnosed cancers. Those numbers are horrible, just plain horrible and prostate cancer rates in Australian males continue to rise. Data published in 2024 by the Australian Institute of Health and Welfare (AIHW) estimate 26,500 Aussie blokes will be diagnosed with insidious disease.

Overall cancer rates in Australia soar every year and any cancer is a personal disaster. There is no good cancer. Statistics paint a rather bleak picture and indicate that one in every four people will at some point in their life develop cancer. Those stats are damning.

As an Australian male who had prostate cancer issues it is just a horrible place to find yourself. For me personally, my diagnosis was greater, it went beyond my prostate, I had stage 2 bladder cancer meaning I was in trouble, deep trouble, medically left unattended I was a goner. My chances of survival were not good; in fact, I would likely have been dead by now. 

In November last year I had an 8-hour surgery at Flinders Medical Centre to remove my bladder, prostate, urethra, appendix and a number of lymph nodes. I had originally been diagnosed with bladder cancer 25-years ago and across the years I had four tumors removed from my bladder. But by mid-2023 the nature of the cancer changed, it had grown into my bladder wall.

And that 2023 diagnosis was a game changer because once the cancer went into the bladder wall and beyond the cancer would spread and eventually manifest in other organs. The bladder needed to be removed and as I had issues with prostate cancer some years ago then prostate removal was required. 

Surgery saved my life. But sadly, the physical fallout from that surgery means I am stuck with a pee bag attached to a stoma in the middle of my guts. I literally pee out of a hole in my stomach, my penis is now used for nothing, it is of no use at all. It is just a sad reminder of, well, days past. I have no sexual function; in fact, I have no sexual feelings at all. 

Unfortunately, that is just the tip of the iceberg. Because losing the sexual feeling is tough but emotionally, I am in a dark spot, a spot where I never expected to be headed. With my prostate gone and my ability to be sexually active it means I have lost the ability to experience a range of emotional feelings. The connection between sex drive and feelings is not something I ever understood, or so it seems. 

Naturally the feelings that sex aroused in my body are clearly understood but the big picture of how those feelings rule life is what it seems I never properly understood. My emotional feelings have been tipped on their head. For me, at this minute 303 days after the prostate removal surgery I have come to understand, not accept mind you but understand, the sexual drive has gone, that is tough enough but now what is happening psychologically means I am just not the same person.

Emotionally everything is different. Very different. Emotions are gone, gone in a sense that my heart, mind and body all feel different. It is not a heightened sense, it is not a dull sense, it is simply emotionless, it is sort of like feeling nothing. I have never in all my years felt this way. Ups and downs, highs and lows, sadness, grief, all the normal feelings have been there for me, but now I have lost the ability to feel emotion.

And it just happens, like right now, sitting here writing and I realise I cannot feel anything, it hits home and that is tough. Psychologically as said, this is very weird. Because the no physical feeling thing is begrudgingly accepted but with this emotional void things suck. It is a feeling of being continually numb, not a feeling of numbness as such, there is just a nothingness to this. There is a sadness of sorts, but even that is different, it's a crushing feeling. Sure, I still tear up, but I think the inevitability of what is medically wrong means that mentally it becomes overwhelming.

It took some months for the penny to drop. I knew things were different, yep, the physical changes were there for me to see and deal with on an hourly basis, but this emotion thing was not something I grasped. I knew something was off, something was not right, but it took me awhile to figure it out, After the surgery a number of physical complications distracted me I guess, dealing with them did not allow me to gain any insight into the psychological mess I now understand. Physically I had a lot going on, so I assume I put my energy into trying to handle those issues.

Now I come to an understanding that losing the ability to feel emotion is gut-wrenching, it is definitely not what I expected. As said, over the 10 months post-surgery I have experienced many physical challenges with pain and discomfort, but this idea of being emotionally empty is just horrible. And with the Lewy Body Dementia thing hanging over my head, well in life there is no silver lining at all. And that is an awkward and sad concept to accept.

This cancer and organ removal that resulted has totally wrecked so much about life. Sure, good things still happen, life does present some decent moments but the feeling that comes with life or should come with life being enjoyable simply does not exist. It has gone, it has been removed from my psyche.

Now, without any chance to feel aroused in any way then the impact that has is enormous. I would never have guessed that by removing the ability to feel arousal in a physical sense that this would totally destroy a complex system of human feelings. But sadly, very sadly it has. I am personally in uncharted waters, this is just hard to fathom, and it is not good.

Yep, it definitely took some time to grasp why I was feeling so low. Time to try and understand what the dickens was happening, to understand this emptiness that has replaced my complex emotional network I had known across all my years. In the beginning I simply did not piece together all the threads that gave an indication I had lost the ability to having emotional feelings. I just did not get it.

Sure, cancer is a bummer, my LBD issue does not end well so the sadness with knowing my future ends in a mess is a constant downer. The cognitive decline is really taking hold in some areas, and I feel myself slipping away from things that are vitally important to me. I hold on as best I can, I battle and fight inwardly to push back on the decline knowing I have to hold on to things that literally make me tick. Because I believe that losing control of my extraordinarily brilliant and overactive mind would mean I am done. 

For 69 years I have lived with the knowledge I am different. I am unique in how my mind works, how it works with thought, with knowledge, with will power, with mental strength, with this uncanny ability to troubleshoot and solve a myriad of ideas and concepts that continually present on an enormously broad range of topics. My mind is a problem solver, it is mathematically genius, it is a sponge for retention of facts and detail, yeah, it is mentally complex and certainly different. 

I have loved working with my mind throughout life so to lose any or all of that extraordinary gifting will be personally devastating. So much so that I do not believe I could cope if I know I have lost my superpowers this mind gives me. I cling to hope that this all changes, but  cognitively I know it won't, it can't be reversed. Also, I have these ongoing heart issues and then the constant pain I live with is downright physically and mentally debilitating. Things are bad, things are tough, and things sadly deteriorate over time.

It all looks depressing, and yes, I know depression, I know it well and depression is definitely a part of this, a big part. But what is going on with emotions is way more than any of that. This is new and this is darn awkward, it is really hard to take on board. Everything about life is different emotionally. 

And I am not sure what happens next? How do you overcome this life changing time? All the life hacks I've learned along the way are not of any use. To come to this point knowing how this issue is so troubling is a massive kick in the guts. Physical pain is tough, but it can be lived with, and medication can naturally help but this emotional void that has engulfed me is so far left field that I fail to see how I can bounce back.

The cognitive decline with the LBD is tough, I feel that every day but gee, this emotional loss is a step up again. Just being up and about gets challenging.

With the pee bag the problems are many and they are a significant addition to how it makes you feel mentally. The darn thing is prone to burst, it can happen literally at any time and gee, the fallout is personally embarrassing. 

With the pee bag the problems are outside how it makes you feel mentally. As said, the darn thing is prone to burst, it can happen and does happen at any time and yeah, gee, that makes a mess.

Having developed this stoma hernia adds to the issue, my tummy shape around the stoma is now odd and that makes attaching the bag difficult. The bag bursting has happened a number of times.

When you have a bladder, there is naturally a built-in indicator letting you know it's time to pee, you get that full bladder feeling and you're off to the toot. Without a bladder and having a bag there is no 'full' warning. Sure, regular trips to manually empty the bag is easy but at times the bag fills quickly, and it is easy to overlook the amount of wee in the bag.

With my heart issue I take pee tablets daily and as they are designed to do, the fluid output can be significant and can happen quick. Different times of the day the pills have a different effect, no two days are the same, the fluid buildup and collection in my feet and legs varies from moment to moment meaning the fluid output is constantly changing. After having my pee pill, it is not unusual to have the bag full of fluid a half a dozen times in the next two to three hours. Life is planned around the darn fluid pills.

But, while the bladder removal and pee bag is crap and that has messed with me enormously, the emotional void I am now understanding is something totally different. One issue I can probably work with, the other, I have no idea how to cope. Mentally, I am not in a good spot at all. Depression I could deal with, this emotional void is beyond my understanding

The removal of the prostate is the male nightmare, it renders you totally and utterly useless. 

I know only too well that the life changing affect is not worth it, I hate talking about fairness with illness because I am still here and many others have sadly succumbed to their cancer. But this emotional issue is not fair, not fair in any sense because it does totally change who you are in a psychological way. You feel different, totally different and you are not the same person without emotional feelings.

Being here at Camp Recluse on Green Hill Lake in Ararat is a life saver at this minute, I am needing the peace and isolation it provides. This place allows me to be in control for me, to make decisions on how I approach things without the pressure of mainstream life. I get to choose who I interreact with and when I have that interaction. And right or wrong, I do need to be that way, it is about survival, and this is my way to cope. I am feeling reclusive and withdrawn given what I have written about in this post.

Living off grid and living reclusively is what I need to do for now.

Ok, there you have it, another post for my JonnyG Remembers blog is done. Hey, I am battling on, this is NOT a cry for help, this is me writing my LBD blog and recording how the journey both impacts me and where it leaves me as a person physically and mentally. Thanks for reading, over 32,500 hits on the blog and that is cool. For now, that's me and my post done.

So, as I normally do, I will leave you with a JonnyG funny ...

My wife once asked me if men wipe after they pee, I replied, "As we get older, of course we do, we wipe the floor, the rim, the wall" 

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Days like this thankfully are still possible, ok, footy result aside this was a decent day in Melbourne ... Ruth and I had a long day, drove to Ballarat, took the train to Melbourne, did some shopping, walked around the city, went to watch the Cats at the 'G' then train back to Ballarat and drove home to Camp Recluse in Ararat, back here at 1am ... but, yeah, big day, long tiring day however well worth the effort, it was so good to be back in Melbourne, my favorite city ... and a day of rest followed ...

Something a touch different today, spent time at the Ballarat Hospital having some heart checks, very strenuous and hard yacca but I aced it all ... pain was awkward but did all that was required and now wait two weeks to get test results ... been here at Camp Recluse in Ararat for 145 days and this was my ninth hospital visit for scans, tests, infusion or ultrasounds, no wonder medically this time is exhausting physically ...