LIKE SANDS THROUGH THE HOURGLASS

Post 47 - Friday July 26th 2024

The sands in our hourglass of life can be but a few or many. As a collective I am guessing we are happy not knowing how many grains left in our hourglass, how long we have on this earth as we go about living life as simply and as well as we can. Part of the mystique to living is taking things as they come, going about our daily business oblivious to when our life ending will be. Probably it's best that way, not knowing I mean.

For some of us we do understand that there is a lot more sand in the bottom of the glass than what is left to flow through. But that is ok, the more sand to have sifted from our hourglass means we have a clearer view of what our life has been about. For me, I like that.

At the minute sadly my life journey is now a struggle. Sure, I have had a decent crack at things in life but as I approach my 70th year I know the remaining grains of sand in my hourglass are becoming rather limited. Things are looking a bit thin; I reckon I could do with some more sand in my hourglass but as we all know, that is not how things work.

Having Lewy Body Dementia naturally means the journey does not end well with me, things will get rough and tough and when the end comes, when the sand stops flowing, I will be in an ordinary state. That is what happens with this awful illness.

But maybe my time will end before the LBD gets seriously damaging. Maybe the cancer I had will return and that will put a stop to life, maybe it will drain the last grains of sand from my hourglass of life. Right at this minute my health is ordinary because it is in fact uncertain if my cancer is back.

A GP here in Ararat that I have been fortunate to link in with is of the opinion that things could be in a precarious position. He has had me take a series of blood tests and ultrasounds that do not paint the best picture. Those results are not overly encouraging in a couple of areas, my health is awkward, and things are as said, precarious.

I have been having trouble with the right lower leg for a few weeks and an ultrasound shows I have some blood clots, small clots that have formed in the vessels and while they have not moved it is a concern. They will be monitored. My stoma and pee-bag is messy, I have developed a crap hernia around the hole in my tummy and it has become rather painful and uncomfortable. It can bleed and gets rather tender to touch.

But of concern, my Ararat doc thinks I could be facing some bowel issues. The blood tests show my iron count is dangerously low and that may be an indicator that there is cancer lurking. The GP recommended some tests to see what the bowel issue was, and he talked about the possible effects that bowel cancer would cause. For now, those tests are on hold, my decision is based on how I feel about any more possible invasive surgery that might result. Because something like a poo bag is not going to happen.

Thursday at the Ararat Hospital I did have an Iron Infusion aimed at getting my iron levels back to a medically acceptable level. No drama, a rather simple procedure, in at 8-30 and just over an hour later I was having a coffee and muffin. 

The whole procedure took around 45 minutes or so, the iron is released by drip from the bag through a canular into my arm. The nurse was brilliant at finding a good vein and the needle went in without much discomfort, winner, winner chicken dinner. I was rockin' it.

I have scant understanding of the iron issue, my iron count at the last blood test was 5 and for someone with my health issues it should sit around 100. Yeah, not sure what that really means but I doubt it is good. Apparently, I am likely bleeding somewhere in my body hence the low iron count, I am somewhat anemic. Whether that bleeding is a cancer or not, well that is still to be determined.

As said, one thing I do know for sure and that is I will not go down the surgery road like I did with the bladder cancer. Look, that may have helped prolong my life having that surgery to remove my bladder, prostate, urethra and appendix, but the life comfort I take away from it makes the surgery look obsessive. Not everyone will see it this way, all good, but living with some of the fallout from that major surgery 243 days ago has dramatically altered my quality of life.

Given my time over, I would not have had surgery and simply taken my chances.

I certainly do not have a death wish but I am not afraid of death. Hey, I will not just roll over and call stumps on life, life is precious, but with that said, surgery is off the table. My prognosis with the LBD is not good anyhow, it will 'get me' somewhere down the track, so I am of the opinion to make the most of what I have left while minimising pain. Meaning, major surgery again is a no no. Look, I would have some help in whatever form that would take with my pain and discomfort so as to enable me to see out my time as pain free as possible.

And my stoma is causing me some issues as I said. The hernia type bulge around the tummy has been getting bigger over the past few weeks. With a stoma, having a hernia is medically common, around 70% of stoma patients end up with one. 

From what I know and understand the size of the bulge can vary significantly, but to me, mine looks reasonably big particularly on one side and it makes it awkward in a number of areas. The stoma is bad enough, but the bulge just adds a new level of being uncomfortable and it comes with pain.

Then it looks crappy if I wear anything but very loose clothing, it bulges and makes the pee bag area look unsightly. I am embarrassed by it. Also changing my pee bag has become difficult, trying to attach the new dressing gets rather challenging. The tummy shape in this area is all over the place and rather uneven and tape is needed to hold the dressing in place so that I do not leak from underneath.

The tape is uncomfortable to wear with the dressing, it adds another layer of plaster and given that the pee bag is 24/7 then there is no respite. It stays on all day every day; it is crappy. Walking around, moving, bending, just sitting even is a work of art trying to be comfortable. And attempting to adjust and find a decent position to get sleep at night is very very difficult. It was not easy having a night bag before the hernia developed. Having a drain tube attached was always awkward but with even less flexibility around the stoma with extra tape takes uncomfortable to a new level.

Today I was back at Ararat Hospital for an ultrasound checking on the hernia damage. It was a quick procedure, nothing medically strenuous at all, very straight forward but it did upset me, I became distressed for some reason. Not sure what happened but I really lost my way emotionally. Once finished with the procedure I was able to walk out of the room (pic below) and the hospital and that was it. The ultrasound is a part of a forward plan, ahead of seeing the GP here in Ararat Medical Center next Tuesday morning.

For me, the health issues right now don't end there. Adding to the cancer problems and LBD I do have some heart issues that naturally go back to November 27th, 2018, when I suffered two heart attacks and cardiac arrest. At that time, I was a very lucky man, the symptoms for the first heart attack developed at home around 10pm after a long workday and once it became clear that I was in some serious trouble, Ruth dialed 000 and an ambulance was dispatched from Morphett Vale to Montpelier Street in Woodcroft. The paramedics quickly identified that I was on the cusp of a heart issue, so they loaded me in the ambulance for a flying trip to Flinders Medical Centre.

Lights flashing, sirens blaring it was indeed a quick trip down the Southern Expressway, but alas, we did not make it. I had a heart attack in the ambulance. The crew stopped on the side of the Expressway heading down the hill to give urgent attention, and I was revived with the paddles. I did remember some of the incident once I was back from oblivion. I could hear sirens as a second ambulance was summoned, I could hear the urgent chatter of the crew giving indication that this was serious. But my memory is I felt ok, confused but ok, I believe I died, I remembered that, and I remember this was really peaceful and fine. From that time on I do not have any fear of death, I just remember it as being so darn calm and peaceful.

And Ruth was on board the ambulance, so she had to sit through the entire ordeal and watch what was unfolding.

Once I was stabalised on the side of the Southern Expressway the next step was completing the trip to Flinders. Arriving at the ED I was ushered inside by the heart team who assessed the situation, and I was hunted off for surgery to have a stent inserted in a blocked artery. Once back on the ward I was reunited with Ruth who had to sit through the time not really knowing how things were playing out. Ruth had been sent to Triage to book me in, to give my personal details and make sure all the paperwork for admission was up to date. I mean, rules are rules.

Next, I do remember being on the ward with Ruth and the nursing staff, I was stressed and agitated but then the real trouble started. A blood clot moved to my heart and was caught in the stent, from that I went into cardiac arrest. Heart attack number two.

The emergency heart blue team sprang into action and a nurse administered CPR on me as my heart rhythm could not be found. This young lady saved me, I remember that bit vividly as the CPR really hurt, it was extreme chest pain. 

Anyhow, an electronic pulse was restored and then the paddles were used to revive me. I don't remember everything else at this point, but I do recall the CPR event.

Later, I was able to ask Ruth all about it and I described to her the nurse, what she looked like and what she did and how this all felt. This is a side point, but I am staggered to this day by what I remember from the Cardiac Arrest incident at Flinders. It was all so real even though the memory is only for that short period of the time the incident took to unfold.

After the cardiac arrest and CPR to revive me I was rushed off for more surgery, this included placing me in an induced coma and being put onto a respirator to keep me alive. The idea was to allow my heart time to recover by having it rest and for me to be breathing through the machine. I was transferred to the ICU at Flinders and spent the next four days there. I was out for just over 60 hours in total as the cardiac team assessed what was going on. (pics above left show my time on the respirator in the ICU at Flinders - was not the time for pics but was able to access these shots, quality was poor unfortunately but shows what was happening when I was sedated and breathing thanks to the respirator).

It had been a tough time, so much happened so quickly from the Tuesday night when I felt ill at my Woodcroft home until the time I recovered enough to be moved from ICU to the general heart ward. But I survived, wow, back from the dead.

For Ruth it was a tough night at Flinders in November 2018 as the heart attack drama played out. After the cardiac arrest she was not part of what happened once I was taken to theatre, instead she was left in a room at Flinders not knowing if I was dead or alive. It was not until early next morning some six hours after the ambulance trip that she had the news I survived and was now in the ICU. Ruth was then allowed to visit and be at my side.

She spent most of the next few days watching over me and had the difficult task to call my son Bradley, my family and my work colleagues to fill them in on what went down. I owe Ruth a huge thank-you for all she did for me and then making sure that I was comfortable and cared for as the time on the ICU played out. She would go home for some rest and a freshen up, feed the animals and have something to eat but was always back at the hospital as soon as possible. And at the time I was naturally oblivious to all Ruth did.

I must say here that the heart teams at Flinders were superb in how I was looked after, mostly things were handled brilliant and with respect. A couple of incidents weren't the best but really it all went so well. Both Ruth and I were very grateful for the Flinders surgical, clinical and nursing staff.

Now, writing all this detail here is for me, for my benefit, it adds the story of the heart attacks to my JonnyG Remembers Blog and gives a personal account of how things played out. It is not necessarily a part of the LBD journey, well, it is in essence, and it is important, for me, to record on the blog all of these details and memories.

And I know God was with me this night, heart attack one in an ambulance and heart attack two on the heart ward at Flinders. For me, I know how lucky I was, things were most certainly going my way and despite the seriousness of what was going down I was in the best possible place. I was blessed in many ways. Praise God.

So, my heart, what is it up to now? It does impact with my currant health battle. I get some awkward heart pain and Atrial Fibrillation is an ongoing issue. With that comes some shortness of breath, when I have this shortness of breath it becomes a troublesome thing because the natural reaction of the body is to fight for breath. The body is clearly in distress and that means I am in distress, it just happens. Definitely no fun and is really awkward fighting to get air in especially when it wakes you at night and you need to jump up out of bed to get some breath. Scary stuff.

Another heart related issue is fluid, since the heart attack times fluid buildup in my legs is an ongoing medical problem. Fluid tablets taken daily look to help to reduce the fluid, but for now I am in what is known as heart failure. That is not as bad as it sounds but is a medical term for where things are at.

The fluid problems have intensified following my major cancer surgery last November that included lymph node removal in my legs and thigh. The heart related fluid problems can be major, really awkward and very painful. And it affects the feeling in my feet, they are numb and lack sensation, meaning being on my feet for long is tough and walking can be somewhat painful and difficult. Oh my, I am turning into Jimmy, the Barmera shuffle! However, the fluid buildup from the heart issues is different medically, I am told, to the fluid problems I have with my lymph node issue. They are totally separate issues it seems.

So, with all of the health problems as explained here on this post, how am I travelling mentally? Am I in a good spot or has the depression become somewhat chronic? Hey, I am doing ok, you know, as well as one would hope to be. Naturally, there are some crap emotional moments and I sit and contemplate what will be the future and think through where I have come from in my past to where I am right now. And yes, that can be a tough thing to think through at times.

With my prostate and urethra removal then my penis is obsolete, I mean, I pee into a bag through a hole in my guts and any manhood feelings have been taken. That is crap, hey, not wishing to be gross here but losing the manhood feelings is the worst thing that could have happened. I hate that. Being a man without being a man, that is the pits. Mentally, it just knocks your socks off, I would never recommend this to any male. Dealing with the fall out is not something I am doing well. Life changed, and not for the better.

Back to the thought of not wishing to have any more invasive surgery, the damage is done after the urology surgical procedures from last November and nothing like that will ever be happening again. As I did say before, I do not have a death wish but given how things will play out with the LBD then I do not wish to make my life any tougher than it is with further surgery. Quality is now a key going forward. I do accept that minor medical adjustments that may help my pain levels would be looked at but that is where things will stop. Nothing past any procedure that will help me keep some life quality.

Look, I am sure others would take a different path, do whatever is necessary to stay alive. Surgery, chemo, radiation, radical removal of organs with cancer etc. and I wish them well. They would do what is best given their situation. I sadly battle with this chronic pain, so I would look at anything to help contain and/or minimise that over whatever time is left. Having the cancer is one thing, but with the LBD then my days are eventually numbered anyhow. The LBD takes me out at some time and while the cancer may get me first, I am comfortable with my decision to leave it as it is surgically and take my chances.

You cannot stop time; you cannot stop the grains of sand from passing through the hourglass. 

And on a final comment regarding current health. Chest pain and chest tightness is constant this past week or so, no left arm pain so not fearing anything in the heart attack area. But it is awkward as it is causing ongoing discomfort. Maybe it is reflux related and not heart, I am not sure. And I have had headaches this past week or so, bad headaches, unusual neck, side and back head pain. The headache will respond to a dose of Panadol but the relief is brief and temporary.

Then, last week I had a nasty tumble in the homestead here at Camp Recluse in Ararat, it was in the dark of night, I tripped and fell hard so now have a very sore left side with my leg and hip being most affected. It was a silly incident and one I should be avoiding with my strategies around 'fall prevention'. Leg cramps are another recent problem and on the night of the tumble my left thigh was cramping and, in my haste, to get up from bed to stretch I forgot to disconnect my night bag and I tripped. Silly mistake, totally avoidable if I had followed my plan. Silly boy.

Well now, time has run out on this post, gee once again that got out of hand and went on a bit long. If you have made it to here thank-you, I appreciate that you are indulging me as I tell my story. But, with this lengthy post, in my defense, I write this blog as therapy, and I write it to have a long-term record of this LBD journey, what it all means and how it unfolds. And across the 47 posts and 18-months that I have been penning my blog it approaches 30,000 hits so wow, that is just simply massive. 

And as I haven't posted here in a while I will lighten the mood, give you all a chuckle with a JonnyG funny ...

The advantage of being male with a pee bag and not a female means I don't have to find matching shoes ...

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For those of us who believe then we know that God and God alone holds our 'Book of Life' in His hands. Our life story is already written, we play out our story but ultimately our life is that of Gods will. Yep, we have free will as we go about living and how we use that free will is entirely up to us meaning we do get to make choices. We control our own destiny in how we wish to live as God wills us to. We either follow His teaching or we don't.

I know that not everyone gets that point nor understands that, but for me personally, I am happy to live my life with God as my Savior and my guide. I praise God for my life, the good and the not so good.