Preface.
What I have written here are my recollections of a very traumatic year in my life. It is by no means intended to offer any advice or suggestion to others who might find themselves in the same situation. Some of my experiences may be considered impossible, ludicrous or beyond belief – that will depend upon the interpretation of the beholder.
In The Beginning.
2023 was the toughest of all the 81 other years I had lived.
The drama started late in October 2022 when I had my annual battery of blood tests.
This was usually followed by a visit to a cardiologist I had been seeing for many years for management of moderate hypertension and hypercholesterolaemia. However, my visit in October 2022 was unusual. I waited more than half an hour past appointment time. No big deal but one would usually receive a brief apology – not so that day. He was not his usual, friendly self. Usually, he would have me bare chested on the couch to listen to my heart very carefully – checking on the murmur he diagnosed a few visits prior. That day he sat me on the couch and briefly listened to my heart - through my shirt. He briefly scanned the blood reports – making no comment about the elevated Prostate Specific Antigen (PSA) – the prostate gland meter of malignancy, or the elevated blood sugar level suggestive of diabetes, wrote a script for the usual medications and bade me farewell. I left feeling insulted. Recently, his office rang me to remind me of my forthcoming 2023 annual appointment, I informed the lady I would not be returning due to other medical issues. There was no follow up.
The upshot of that blood test was an elevated blood sugar level (BSL) and subsequent glucose tolerance test that confirmed a diagnosis of diabetes Type 2. (Non-insulin dependent) Coincidentally, my PSA level was, only slightly, elevated but the biochemist commented there were other substances present usually only seen in the presence of prostate cancer.
I put myself onto a diabetic regime – of sorts. I enquired about monitoring equipment at the local pharmacy and was shown how to record my Blood Sugar Levels (BSLs). I got myself into the habit of doing it first thing every morning along with my weight and blood pressure. I rigged a chart on the white board in my study and record all results there. When the chart is full I take a photo with my mobile phone and save it in the phone’s memory. My blood pressure, 133/82, has always been in normal levels – I do take appropriate medication. My weight is slowly increasing following the loss of 10 kilos through 2023.
Investigations.
My GP arranged an ultrasound of the urinary tract. It revealed an enlarged prostate and a 5mm stone in my left kidney. I was referred to a local urological surgeon whose clinical examination confirmed prostate enlargement. He arranged biopsy under general anaesthetic. Result – Gleason score 5 + 4 = 9 - very bad news. (The Gleason score measures the extent of the cancer cells (4 out of max 6) and their aggressiveness (5 out of max 6.)
I was surprised when the staff told me I could not go home because I had a general anaesthetic. I had to stay overnight. On this, and other occasions, friends, very kindly, looked after Hanna – my dog.
Then Xmas intervened and I was left to my own devices, and introspection, for a few weeks over Xmas and into the new year - 2023.
After the holidays the urologist referred me to a radiation oncologist based in Mandurah – not far from home. In fact, he made a phone call to that chap who agreed to see me immediately. He was generous with his time, agreed with the urologist that External Beam Radiation therapy, (EBR), plus Androgen Deprivation Therapy (ADT) using oestrogen should be the treatment of choice.
He explained what that entailed. Basically - an initial x-ray, to establish correct alignment of the radiation beam, and tattooing three skin markers around my pelvis. This would be followed by 36 sessions of external beam, focussed radiation coupled with monthly oestrogen injections.
A prerequisite to radiotherapy was the injection of a radiopaque substance into my pelvis between the prostate and the bowel. This was to prevent radiation damage to the bowel. It entailed another general anaesthetic and overnight stay in the local hospital.
Treatment.
Later, I received notice of an appointment at the radiation oncology clinic. A very pleasant nurse led me on a tour of the areas I would be involved with including three change rooms adjacent to the radiation rooms. These rooms were tiny but the ante-room held five seats and a doorway indicating a toilet - but it was signed, “Out of order.” There was a bank of “pigeon holes” on one wall which I mistakenly understood were where to place my clothes after changing into loose, green linen slacks and pullover top.
They gave me several booklets - detailing prostate cancer and its radiation treatment - and a quite painless injection of oestrogen into a buttock – the first of a series over five months. It was all a bit overpowering – a whole lot of information overload.
A few days later I had to attend the clinic to be measured up for the x-rays. I was allocated a pigeon hole which contained the green, linen suit. I took that into a change room and changed. I was distressed when I discovered my clothes – especially shoes – would not fit into the pigeon hole. I later learned that was not their intended purpose. A nurse then issued me with a decent sized, hessian bag for my clothes and I was to carry that with me into the x-ray room at each visit. It also contained a 600ml plastic water bottle.
It was then all straight forward. I was invited to lay, face up, on the x-ray machine table and expose my pelvic area. Two technicians then worked to exactly locate my prostate with x-rays. Then, when they were satisfied, they switched on a very narrow light beam across my pelvis and tattooed three small dots on the beam – one on the mid-line of my pelvis and one on each side. And that was that.
I was given the first of a weekly attendance program - to begin the series of 36 daily exposures - and instructions. Each visit had a “Plan A” - attendance time in hours and minutes plus an x-ray time beginning about 20 minutes later. The times varied from day to day. I was issued with a weekly appointment program each Thursday. Weekends and public holidays were excluded. The instructions were that I should empty my bladder one hour prior to the attendance time then drink 600ml of water. I was to retain the resulting urine until after the x-ray exposure.
It was suggested that I take a daily dose of Movicol – designed to act as a faecal softener. It certainly worked but more about that later.
There was no plan B! That is – no instructions on what to do if something goes wrong.
My first treatment session, on 1st March 2023, went exactly according to plan. Exactly 20 minutes from home, about 15 minutes wait after arrival then only 15 minutes for the procedure performed by two pleasant, friendly technicians.
The radiation machine was huge – basically a (?) steel table that could be moved electronically up and down, forward and backward and four very big gadgets, each on the end of a radial arm mounted on a ring that encompassed the table. Once I was in the correct position they gave me a plastic ring I was to clasp to my chest - to keep my arms out of the way and immobile. Then both technicians left the room after telling me to remain perfectly still.
Nothing happened for a few minutes then the machine began the rattle, bang and clunk as the arms rotated around the table with me on it - stopping now and then. Then they rotated in the other direction.
Then it was finished. One technician returned and helped me off the table. By that time my bladder was sending urgent messages and I hurried to change back into my clothes, stow the green uniform into the pigeon hole and get into the more or less public toilet in the passage outside. (The passage was used as a waiting room by other doctors.) The toilet in the waiting room was still labelled “Out of order.” Bladder (and bowels) empty I went home.
Day two, treatment number two, NO PLAN B - and I needed one. I arrived a bit earlier than the appointed time, got changed and waited to be called into the x-ray room. My treatment time passed and my bladder was making its presence very much felt. With each passing minute it expanded more and more. No staff member appeared to explain any cause for the delay, how long it would be or what I could do about it. NO PLAN B! There were another three patients in the room waiting their turn. The toilet door was still labelled “Out of Order”. My bladder began to leak. No matter how hard I tried I could not stop it. The front of the green pant became saturated. I decided to leave via the outside toilet.
As I stood, the technician arrived and invited me into the x-ray room. I lost my cool and rudely told her I could not do it indicating the saturation. She simply said, “Oh, come on I will get you a dry trouser. You should have gone to the toilet and drained off some urine.”
“Now you tell me! I was afraid you would cancel the treatment if my bladder was not full.” She handed me a dry trouser without further comment other than, “I will wait here while you change.”
I managed to retain what was left of my dignity and the urine in my bladder until only a few minutes prior to completion of the exposure. Then, despite my best efforts, urine began to leak again. No Plan B! I did not dare move or speak before the exposure was complete. I then told the technician about the leak. She was quite upset about that and told me that if the urine got into the machine it would have to be shut down for a week. Fortunately, that did not happen.
I got off the table as quickly as I could, thanked the staff and made a dash to the toilet in the corridor outside – green trouser visibly wet. I made it just in time to drop the trouser and sit before the urine drained - but it was accompanied by an explosive opening of my bowel of soft excrement. The Movicol had certainly done its job - as it subsequently always did. Unfortunately, I was never able to predict when it would necessitate a very rapid visit to a toilet. I experienced some very close shaves. I vowed and declared that in the event of any repetition of that day’s treatment I would abandon the course. Fortunately, I did not have to do that.
In the following weeks the “Out Of Order” sign remained on the door to the toilet in the change room. I reported it on three separate occasions to three separate nurses. Each said it had been reported - but no action had been taken. One day I saw another patient exit from that room and decided to have a look. The fact was the toilet itself worked perfectly well, (and I never had to dash along the outside passage again), but the problem was the wash basin tap did not function. A squirt bottle of hand steriliser was provided.
That situation remained unchanged until a few days before my final exposure when I noticed the sign had disappeared and both toilet and the wash basin tap now worked. But no staff member drew my attention to that fact.
About half way through the treatment schedule an appointment was made for me with a trainee radiation oncologist. Nice enough young bloke who dealt with my enquiries entirely to my satisfaction. One issue I raised with him was the fact my urinary tract was now very reluctant to open on demand. This necessitated some hesitancy and straining but with variable result. The major risk with this was that straining to micturate also gave licence to the bowels to empty. I didn’t have any disaster but came mighty close on several occasions. In anticipation, I developed the habit of dropping trousers and jocks before sitting down to release whatever came to pass – so to speak. Saved the day on many occasions.
I also carried a clean pair of jocks in a plastic bag in the afore-mentioned clothes bag. The trainee gave me a script for Uro-Rec which was expensive but enabled me to let loose urine without straining. (But I still had to be wary of concomitant bowel action.)
My final treatment session took place on 28 April 2023. In the interim the ADT plus the x-rays had kicked in obliterating all androgen (male hormone) production. This resulted in the beginnings of female adiposity, (deposition of fat in a female pattern), hot flushes, tiredness most afternoons, some insomnia, loss of muscle mass, and total impotence. This, plus most importantly and unbeknown to me – osteoporosis – more about that later. These symptoms did not bother me a great deal and my PSAs were not recordable indicating that no prostate hormone was being produced. There was a booking for review for about five months later and arrangements to have an oestrogen injection in alternate months. I just got on with life, at a slower pace, for the next two months, adjusting to changes in daily habits.
Purgatory.
(Definition - any condition or place of temporary punishment, suffering, or expiation)
Later review of the literature I had been given revealed that osteoporosis had been mentioned but it did not register as significant to me. My bad! I mowed my lawns without event on 23 June. The inevitable result was, on 24 June 2023, I woke with severe back pain – so much so that I could not walk. I called the ambulance and was taken to the local hospital emergency department (ED). Then all hell broke loose!
Fortunately the ambulances were not ramped and I was immediately wheeled into a curtained cubicle in the Emergency Ward. In due course I was seen by a tall doctor who asked a few questions and I told him about the ADT and prostate cancer. He did not examine me and casually informed me he would order a CT scan and left.
Subsequently I was taken to the x-ray department and had the scan before returning to ED. Over the next hour or so I observed the tall doctor moving about the department. I had a touch of deja-vu as I had worked in that department for three years prior to retiring. He appeared to be ignoring me. Eventually, I called him over and asked if he had a report on the CT scan.
“Yes,” he replied. “You have a crush fracture of L1, (1st Lumbar Vertebra), cancer and you are going to die.” Then he wandered off leaving me flabbergasted.
A while later another, younger, doctor approached me and suggested he arrange an NMRI, (Nuclear Magneitc Resonance) scan to determine if there was any cancer involved in the fracture. It was done and he showed me the report which stated there was no evidence of metastatic disease. I was ecstatic about that. He said he would discuss me with someone at the Spinal Unit at Royal Perth Hospital. (I completely forgot about that and, some weeks later, was surprised to receive a phone call from RPH).
I spent that night, and the next, in an annexe to ED. It was relatively new and certainly not there when I worked there. Family and friends turned up and we made arrangements for Hanna, my dog, to be cared for and the house to be visited from time to time. Staff gave me analgesics, sedatives and laxatives. My blood pressure was taken very early in the mornings and state of my bowels enquired after. I was close to a toilet and managed to struggle over to it unassisted on several occasions. Walking was very painful as was getting into and out of bed. I asked for a walking frame without success. I mentioned this to my son when he visited. He promptly walked out and returned with a walking frame he had noticed standing in a corridor on the way in. It came in very handy. I cannot recall ever being assisted.
On day three I was transferred to a four bed ward. Nothing much else changed. Each of the other three male patients appeared to have some form of dementia. I had no idea if any particular doctor was responsible for me. The next day two ambulance people arrived along with a nurse and started getting me onto their stretcher. I asked what was going on and they replied – “We are taking you to Fiona Stanley Hospital.”
I had no desire to go to that hospital – about an hour’s drive from home – and told them so.
“It is only to have you fitted with a spinal brace and we will bring you back.”
And so it transpired. The trip took the better part of an hour each way.
The Jewett Brace must have been designed in some medieval torture chamber.
It was laid out on a table and I was manoeuvred off the ambulance trolley onto the table and brace, face up. It seemed to have a vertical, aluminium plate at the back and some sort of struts across the front – one about nipple height and the other just above my pubic bone. A strap on the end of the upper strut was fed through a buckle near my right arm pit and pulled tight. I was trapped. I cannot recall how the pubic strut was fixed in place but, most significantly and to my later utter disgust, my 82 year old abdominal skin fold rested over it completely obscuring its upper edge. I was told I could take it off to shower. I correctly surmised that, once off, it would be impossible for me to replace it unaided.
I was returned to the ambulance trolley and taken back to the hospital where, for the only time ever, I was assisted to get back into my bed.
I vegetated there until 14 July although I was moved from one room to another on several occasions. The beds were standard in each room. They had a metal rail on each side which reached from bed head to half way down. It could be unlocked and lowered. There was a control mechanism on the end of a power cord. It was usually hung on the side rail. With it I could raise or lower the bed head and adjust the depth of the gully in the middle of the bed. Through a process of trial and (painful) error I worked out a process for getting out of and back into bed without assistance.
The Jewett Brace forced me to sleep on my back. I could roll to one side or another but not stay there. Initially it was firmly in place but, with the passage of time, it gradually loosened. To get out of bed I would get the bed flat then roll onto my side with one arm, flexed at the elbow, underneath with the opposite hand grasping the bed rail. Then, I would flex my knees and hips so that my legs were out over the side of the bed and acted as counterweights to my body. This I managed to raise by pulling/pushing on the bed rail and using the dependant arm to push my body up. The leg weight plus the arm actions was usually sufficient to get me upright with my legs hanging over the side of the bed. My recalcitrant crushed vertebra was a constant reminder my need for caution.
Hallelujah! I kept the walking frame beside the bed. I would grasp its handles and slowly ease myself upright off the bed before galloping off to the toilet. (Actually, it was more shuffle than gallop.)
Getting back onto the bed was the reverse process. I would sit on the bed and gradually bend to my side nearest the bed head while raising my legs until I could get them onto the bed, straighten them and roll onto my back. Then shuffle and wriggle until I was straight. (I was going to say comfortable but that would have been an oxymoron.) From the day I was trapped in the Jewett Brace until the day I removed it and threw it out – not a single doctor or nurse or anyone else examined me or checked the brace.
Each day usually began before dawn when the night nurse would wake me to take my blood pressure and give me various medications. Getting back to sleep was usually impossible. I would struggle to the toilet and back, try to get comfortable – this usually required me to adjust the bed so that my pelvis was in a hollow with legs and body higher than that. I could arrange the mobile table in a position to support my digital tablet then read the news on my tablet. Breakfast would arrive later and there was not enough room for the meal plate, the heavy cover which kept it warm in transit, the coffee mug and my tablet. None-the-less everything was dumped on the table and the bearer left me to sort it out.
After about a week my daughter, Emma, who is a senior administration nurse at a Geelong hospital, and her daughter, Reu flew over for a week – just to cheer me up. So, my intrepid family along, with help from friends and some of the nurses rugged me up in blankets and a beany, put me into a wheel chair and trundled me off to a far flung space in the hospital car park to see Hanna.
Next day Emma and Reu both felt unwell and tested positive to Covid. Reu had no symptoms but Emma was quite ill for a few days. They never got to see me again before having to return to Geelong. They had stayed at my home of course.
In my absence a friend , who lives about 500 meters from me, would collect Hanna from my home every evening and take her to his place for the night. He has a dog too and they got on quite well. In the morning, after feeding, he would take her back to my place. He would let her in through the front door and she would frantically dash through every room in the house. We presume she was looking for me.
(Good friends are the rare jewels of life, difficult to find and impossible to replace.) Anon.
The Enema.
Every day someone – usually a nurse, would ask me if I had my bowels open that morning. The answer was usually, “No”, but I learned to lie about it after someone decided I needed an enema.
[Dim, distant memories of my time as a Navy Sick Berth Attendant and soft, rubber, wide bore tubes gently inserted into constipated sailors aided by generous amounts of lubricant. Water was introduced into the upright tube then allowed to run out into a bucket when the end of the tube was lowered below the edge of the bed. Bowel contents were usually flushed out.]
A nurse turned up carrying what looked for all the world like a metallic fire-lighter.
“What is that?” I asked.
“It is your enema. Please turn onto your left side and draw your knees up.”
I complied and felt her lift my right buttock then inserted what I assumed was the tip of the “enema”.
Then a sharp, seriously agonising pain caused me to scream and shout at her to get it out. She promptly did and people came running from all directions. To this day I have no doubt whatever that the tip of that damned “enema” perforated, or at very least, lacerated my bowel.
I got off to the toilet and passed a small amount of something, probably enema, and some blood. Thereafter they gave me oral aperients. They worked. I passed small amounts of blood for weeks thereafter. No one bothered to have a look, do a digital examination or a colonoscopy.
When the three doctors arrived next day I could not help myself but related the ancient medical axiom that, when dealing with ano-rectal problems, if the doctor does not put his finger in then he will put his foot in it. That elicited bewildered stares.
I have since wondered if the Barrier Jel inserted between prostate and rectum may have distorted the path of the enema tool. Even if it had I believe the force exerted was extremely excessive.
I reluctantly remained in hospital until I got fed up with the whole scene and on one particular day no one entered by room between noon and six pm. Fed up, I discharged myself and got a taxi home.
At home my phone rang. It was Emma, calling from Geelong. She was my nominated next of kin and the charge Nurse had called her to tell her of my desertion. A couple of other friends turned up – called by Emma as soon as she heard what I had done. Emma persuaded me to return to the hospital and a lady friend from the entourage drove me back.
I persevered. Nothing changed. On several occasions hunger got the better of me and I would follow my walking frame around to the hospital canteen/coffee shop and enjoy a pastie or pie and a cup of coffee. No one seemed to notice or asked why.
The three wise doctors would drop in occasionally. I don’t know why. Eventually they, I presume, decided I should be moved to the “Rehabilitation Ward”. A day or two later they were sick of me and discharged me. The Rehab Nurse drove me home and inspected the shower, toilet, kitchen and bedroom advising me along the way. She advised I should get grab rails installed in the shower. I could see the sense in that and made appropriate arrangements. They were installed a few weeks later.
There were no follow up arrangements other than for the quarterly hormone injections which had nothing to do with the hospital.
A few months later I received a letter from the hospital requesting I give them feed back on my stay. I did - none of it complimentary but polite, and received no acknowledgement. I later learned they had no record of it.
The Ulcer.
I had been home a few weeks and learned to live with the brace – which was obviously too loose – but I managed to shower with it and to look after myself and Hanna. Then I noticed pain beneath the pelvic Jewett strap and a suggestion of a discharge. I managed to get a GP appointment for a week or so later. The GP actually examined me and detected a huge ulcer through my skin in the abdominal flap which sat over the brace. She swabbed it, prescribed antibiotics and arranged for Silver Chain to look after me. This they did – the Nurses, (they were all very professional, caring and friendly,) would visit me three times a week to clean and dress the ulcer. I was amazed that it was healed at the end of the third week. We would take a photo of the ulcer at every visit. The photo, below, was taken on day one. The Jewett Brace was disposed of the day I saw the GP.
The Rash
I am a bit vague, now, about the onset of the diabolically itchy rash on my legs. None of the health professionals commented on it or asked about it. (Not at all surprising given that none examined me at all.) I think it first made its appearance shortly after I was discharged from hospital. Reference to my medical library and on-line indicated it is a common complication of Diabetes Type 2, (Non-insulin dependent). It was diagnosed at the very start of this journey but had remained at bay. Even so, I check my blood sugar levels on waking every morning. Very rarely is it above 6.
Be that as it may it soon began to drive me nuts. The rash started about knee level then spread downwards to my ankles and up to about mid-thigh – the itch worse behind my knees. My scratching caused bleeding into and under the skin. The itch did not appear to be related to my blood sugar levels.
I tried several topical applications, including saliva, (which did help and is good for mosquito bites) and Medicreme. They did provide temporary relief. Then someone advised QV Cream which became my mainstay. I applied it liberally over all affected areas twice daily and whenever else it itched.
I am now essentially rash and itch free – I only need to apply the cream once or twice a week and only where it itched which was most often behind my knees and around my ankles. And I am extremely grateful to whichever God organised that. (It certainly wasn’t any doctor.) Both legs still have a generous spread of brown patches – slow to reabsorb blood caused by scratching.
A Screw Loose.
At home one evening the upper brace that crossed my chest sprang loose. A small washer and screw fell to the floor. The brace stood out at about 45 degrees. I retrieved the screw and washer and decided I should go back to the hospital ED and get it replaced.
I drove myself there keeping the loose brace under control beneath a tight T-shirt.
The ED was overflowing. Ambulances were ramped. One patient told me he had been waiting for three hours. I decided to walk up to the ward I had last been in and ask a nurse to replace the screw. I stood around the ward desk for some time while staff studiously ignored me.
Eventually I managed to engage the attention of the Charge Sister and explained my predicament.
“Where were you when the brace was put on you?”
“Fiona Stanley”.
“Then we can’t do anything here for you. You have to go to Fiona Stanley” And that was that.
Fiona Stanley Hospital is about an hour’s drive from my home. I had no doubt their ED would be as crowded as ours so I went home. I rang a mate who lived nearby. He came around immediately. I held the brace in place while he replaced the washer and screw. It took about three minutes. Including ensuring all the other screws were tight.
It happened again a few weeks later. My mate was away so I engaged another who achieved the same result.
Osteoporosis.
- a disorder in which the bones become increasingly porous, brittle, and subject to fracture, owing to loss of calcium and other mineral components.
I noted earlier that osteoporosis was mentioned in some of the literature I was given prior to radiotherapy (EBR) and hormone replacement therapy (ADT) but it did not register as significant. This interpretation was reinforced by the fact no health professional ever mentioned it prior to or during Purgatory.
After my discharge from hospital, (14 July 23), I spent a lot of time reading up on every facet of my situation. I became very concerned at what I found especially in relation to osteoporosis. I concluded that the crush fracture of my 1st Lumbar Vertebra must have been consequent upon the Androgen Deprivation Therapy. I became seriously concerned that, because no one had diagnosed it or initiated treatment I was at high risk of another fracture. I also learned there was a readily available, simple x-ray procedure, (DXA), for diagnosing and possible prognosis for osteoporosis.
I spent the next four months basically in limbo. Existing with the help of friends and family but still living independently but being extremely cautious in my movements and activities. I arranged for a young lady who lived nearby to walk my dog. (Hanna), three times a week. Hanna loves it.
On my own initiative I commenced taking Calcium+Vitamin D tablets and arranged an appointment with my GP – two weeks later of course. She readily agreed with my suggestion that she refer me for the appropriate scan, (DXA or DEXA), and gave me a referral for the procedure. It was done locally, on or about 17 November 23, and simply consisted of an x-ray of my spine, one hip and one wrist.
The GP’s staff later contacted me and advised she wished to see me . I arranged an appointment for the mandatory two weeks later. In the interim I obtained a copy of the specialist report and was shocked to learn that I had a 95% risk of another spinal fracture and a 75% risk of hip fracture. I made no secret of my displeasure that no one, apart from me, has previously made the connection between my fracture and my ADT. (None of which was the GP responsible for of course.) We had a polite chat and she prescribed denosumab 60mg – an injection to be given six monthly. It is relatively new medication – a human “monoclonal antibody” - that inhibits bone resorption. I had the first such injection – into the skin of my abdomen and entirely painless – about a week later and have had another since. Next is due on 19 June 24.
She had sent a copy of the report to the radiation oncologist who also called me in. He did not seem to be unduly concerned, asked what Calcium medication I was taking and said it was the same as he took. Ho hum.
I asked him why he had not requested a DEXA scan on completion of the radiotherapy or during the ADT. He was non-comital merely stating it was not necessary in the vast majority of cases. While I was there I asked him what we would find if we were to look at the site of my now non-functional prostate. He replied. “Nothing.” Which I later had cause to prove was false. (See radiology report, dated 14 February 2024, below.)
At the time of writing – February – March 2024, I am delighted to report that I am now essentially free of back pain and can bend and stoop, (cautiously), without pain or fracture. I do get quite a bit of muscle pain in my flanks especially if I stand too long or overdo any repetitive movements e.g. light gardening. Silver Chain have a young lady come around for 90 minutes once a fortnight. She vacuums and mops through-out my residence and tidies up in general. I am now cautiously taking my dog for short walks and training her to not pull on the leash.
Again, on my own initiative, last February, I went back to my GP and asked if she would refer me for a repeat ulstrasound of my left kidney given that it was over twelve months since a left renal calculus, (kidney stone), was incidentally diagnosed. She agreed it would be a smart move even though I had no symptoms of renal pathology.
The radiologist report dated 14 February 2024 was, shall we say, “interesting” – especially in the context of my radiation oncologist having told me if we looked where my prostate used to be we would find nothing!
The report described the prostate gland I was not supposed to have! “Prostate: Mild prostatomegally. Prostate appears heterogenous and indents bladder base. Patient has had radiotherapy 38 sessions to prostate.”
Conclusion ….. An 8mm lower left pole calyx echogenic focus may be a calculus or vascular calcification , similar to the cat scan lumbar study dated 24/06/2023.”
I need to clarify this with my radiation oncologist when next I see him. However, reading up on it, it seems to the heterogenosity may be consistent with the therapeutic radiation exposure.
My GP tentatively suggested another Cat scan might help the diagnosis of the left kidney abnormality. I was not too keen given that it caused no symptoms and I had had an awful lot of radiation exposure. We will wait and see for now.
Impotence
I have been a widower since 2014. I live alone albeit with my faithful dog, Hanna, without whom I would be lost. Also, a small circle of close friends. I became aware, at the commencement of the Androgen Deprivation Therapy, that it would block testosterone production by my testicles. Testosterone is essential for any male sexual activity. That effect kicked in about 8 weeks after the first injection and, although my last oestrogen injection was given in early December 2023, persists to this day.
Research tells me that most, if not all, males thus treated do regain some if not all of, then at least, some ability to attain an erection. I thought this was accurately described as loss of libido but I looked up the definition of libido and was surprised to learn it actually means “sexual instinct or drive”. That means that my libido is intact but the expected ability to utilize that function remains absent.
One can only live in hope and, as Alexander Pope wrote in his 18th century poem, “An Essay on Man”, - “Hope springs eternal in the human breast: Man never is, but always to be blest.”
So, in summary, in early October 2022 I seemed to be in good health but the downhill run started with a mildly elevated PSA and Type Two diabetes. Biopsy of my prostate revealed extensive invasion of cancer. Treatment with External Beam Radiation in conjunction with Androgen Deprivation Therapy started on 1st March 2023.The final radiation dose was given on 28th April.
All seemed well until 23 June 2023 when I experienced a crush fracture of my first lumber vertebra necessitating my admission to hospital and the application of a Jewett Brace. I was discharged on 14 July. A few weeks later found a large ischaemic ulcer caused by the brace – which I discarded after discussion with my GP. Silver Chain nurses came to my home three times a week to clean and dress the ulcer which – miraculously - healed after three weeks.
I am now essentially pain free but very cautious about increasing physical activity. I have had a dog walker to exercise my Hanna three times a week. I am starting to involve myself with that activity. I have six monthly injections of Denosumab to control bone resorption. I am due for review by the radiation oncologist in May. After that – who knows?
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