Scroll down for 7th update.
Update 2 begins: Thank you everyone for your kind words and support.
13.05.19. Dear Family and friends,
I’m back home and actually feel quite well. A week ago I was sure it was my last day in this life. I got to Corryong Hospital where they pumped me full of morphine, stuck me in an ambulance, that took me back to Albury Base Hospital. After a CT scan they determined that my gall bladder had become massively infected for some reason.I spent that night being injected with morphine, not a drip but the condensed stuff in a needle, and the pain eventually retreated. I had a very fitful night, drifting in and out of consciousness, and being regularly injected.
Last Friday, just a week ago, they removed my gall bladder. I vaguely recall being on a bed outside the theatre for a number of hours – and then nothing until I woke up in recovery many hours later. It took a while to realise where I was and what had happened to me. I tried to move but couldn’t as I had a drip in each arm, both legs were swathed in some sort of pneumatic blankets that squeezed them every few minutes, I had a drain in my side, a catheter in my bladder and oxygen tubes up my nose.
I’d had “keyhole” surgery where they’d shoved 3 laparoscopes into my belly, pumped it full of air so that it blew up like a balloon, and removed my gall bladder somehow. The pain was still intense and made worse from the bruising and the air; but the worst thing was being completely unable to move with all these pipes and tubes stuck in me and being completely and utterly helpless.
Last Friday night was the worst night of my life and even the strongest drugs didn’t seem to have much effect. The slightest movement caused screaming agony. The worst thing and the most humiliating was that, at some point in the night, I lost control of my bowels and shat myself. The nurses had to come in, cut off my boxer shorts, clean me up, and then put me in a rather large nappy. I shat myself twice more that night and there’s nothing that robs a man of his dignity and pride more than to be lying helpless in a bed in a nappy full of shit. The bladder catheter was misery and seemed to press on a nerve that made me feel like I desperately wanted to pee plus it seemed to be about the size of a 1/2inch garden hose. They told me they shove something in, inflate that as far as a urethra will expand and then shove the garden hose up that.
On Saturday I recovered control of my bowels and begged them to remove the catheter – which, much to my eternal gratitude, they did. The pain started to dissipate after that and by Saturday afternoon I was able to get out of bed and take myself to toilet; albeit dragging a stand with several drips and the drain bag still attached.
The pain from abdominal bruising was still quite severe whenever I moved but that started to abate as well. The air in my stomach made swallowing difficult and caused intense pain just to swallow some water. But that’s now mostly passed.
By Sunday I started feeling human again but then they decided I’d contracted a lung infection and started me on powerful antibiotics for “hospital pneumonia” – a common disease from being bedridden and unable to breathe deeply.
By Tuesday I felt like I could go home but I’d been booked for a PET Scan for Tuesday that they then put off until Thursday. So I had that yesterday and the results were sent to Dr Richard Eek at the Border Cancer Centre. He’s an oncologist and a very good one I’m told. In any event, the last of the drips were removed yesterday and the last canula was also removed this morning. They’d taken so much blood that all my veins had collapsed, and they couldn’t find another vein to insert a canula, even with an ultra sound, but it didn’t matter and I had the one still in place for a week until it was removed this morning.
I saw Dr Eek who explained much to me, not that I remember much of it. The outlook is very grim indeed. I have metastasising Stage 4 cancer of the pancreas and that has spread to my liver. There’s a chance that, if I start on the nastiest chemo therapy on 29 May I mighty get 12 months, maybe as long as two years – but that will depend on how my body reacts to the toxins and whether I get some of the nastier side effects. The chemo destroys your immune system so you become very susceptible to any infection and that can become very serious very quickly. If that fails to make any difference to the growth of the tumours, then it’s palliative care and terminal care and it’ll be “game over” sometime in August.
Over the last few weeks I’ve had a number of CT scans, ultrasounds, MRI scans and PET scans. I’ve been thinking how lucky I am to have been born in The Lucky Country where even in a modestly sized regional city all these things are available and it’s barely cost me anything. How fortunate am I to live in a country like Australia where I can get this sort of treatment from such thoroughly professional people. I’m glad I paid all that tax now. There are countries that don’t have the machines, or the surgeons, or the drugs or the nursing and hospital staff that have been available to me at Albury Base or an ambulance to take me there from Corryong. We are truly blessed in this country. While I was getting all this lavish care I thought about people in countries like Venezuela, Yemen, Honduras, Cambodia and a hundred other countries with the same disease as me and who would just have died last week in the most abject agony.
Dr Eek gave me a whole lot of stuff to read about treatment options and the progress of this disease. I can’t bring myself to look at it just yet. I’ll take a few Endone so that I can step outside my body and normal state of consciousness and consider things objectively – like it was happening to someone else. I have no intention of being heroic in any way and will take as many and as much morphine and fentanyl and whatever else they have that will blot out both the physical pain and the psychological pain. There were so many things I wanted to do, nothing grand or outrageous, like to be around to take my grandsons down to the creek with a fishing line; be there to watch them play football or run around at Little Athletics; see them grow into men. Sadly their memory of me will be much like my memory of my grand-father who died in December 1955 when I was 4. Just a snapshot or two from a time so long ago.
I don’t fear death. I’ve never believed in an afterlife or a day of judgement or a spirit realm or anything else. Death is just eternal nothingness. All those trillions of molecules, forged in an ancient star, that assembled themselves into me in a gazillion to one chance about 68 years ago will disassemble themselves and I’ll revert to being stardust in a place where there is no time; just nothing at all.
I have to go back for more full anaesthetic surgery next week sometime. They are going to insert some sort of valve into my left shoulder so that they can use it to pump in the chemo. Apparently, I get a pump attached somehow in Albury, can come home, and then get the pump removed after 2 days over at Corryong hospital.
I’m so used to being waited on, having pretty nurses come around every hour or two, that I’m at a bit of a loss as to what to do with myself. I think Alice has lit the fire, so I’ll go in there and watch the football. Nothing much else to do on a rainy May afternoon.
Perhaps I am lucky that I’ll get the chance to die with my boots on, with my mind still functioning at 100%, and still able to go about my daily routine without much in the way of physical impediments. About the only thing I can’t do, as a result of the two operations I’ve had on my stomach, is to swing the block-buster.
At the end of October I started a fairly big DIY project. My house is a big old weather-board farm house with 120 square metres of verandahs on three sides. So my verandah is bigger than a town house I once owned in Canberra. In any event, the previous owner who installed these extensive verandahs extended them about 1.5m beyond the roof line at the northern and southern ends. As a result they were exposed to rain, ice, and blistering summer sun light and this became water damaged over the years, the nails came out and the whole had to be replaced. So, in October, I ordered a couple of lengths of 100x100x4 SHS, about 30m of 25x25x3 angle, 10 lengths of 4×2 timber. about 250 lineal metres of 75×19 pine decking, 75m of aluminium battens, and about 50 square metres of clear corrugated plastic roofing.
To cut a long story short I fabricated all the steel posts and trusses, replaced the water-damaged joists, installed the battens and roofing, tore up all the old decking and replaced that. I had 3/4 of the job done when I first took sick. All that was left to do was replace the joists and decking at the northern end of the house. I’d mixed and poured over 3000kg of cement to make sure the posts would never move and used lasers to make sure they were exactly where they should be. Anyway, on Friday my youngest daughter and her husband collected me from hospital, brought me home, and on Saturday and Sunday everyone pitched in and we got the last of the job completed. I am so pleased that it’s finished as I’d torn up the old decking and there was this massive hole 7m long and 1.5m wide starting at the back door. But, apart from some cosmetic painting and a few other little things, the job is finished and it’s such a load off my mind.
Over my adult life I was always into DIY things and did as many TAFE courses as I could. I learned to be a welder, oxy and electric, something of a carpenter, a small motor mechanic, an appliance electrician, a concreter, a brick layer and paver, an engineering draftsman, and a fairly reasonable painter and decorator. I have a 9m x 6m workshop and power and hand tools for just about every conceivable job that’s likely to arise on a little hobby farm. I think my workshop is better equipped than many a tradie’s workshop I’ve seen. The pity of it is that I’m the only one in the family who knows how to use most of these tools.
I have hand tools that have been passed down over the generations from my father, my grandfather and I even have an old wood spirit level, with a date stamp of 1902, that belonged to my great-grand-father. My great-grand-father was an interesting man. He joined the NSW Mounted Police in about 1882 and rose to be the Superintendent of Mounted Police for all New South Wales by 1918. My paternal grand-mother used to claim he was “the most hated man in New South Wales”. He was a very big man with hands like hams and was a real “old time cop” who, wherever he was stationed, dealt with petty crims in his own way i.e with his fists and the bull-whip he always carried with him. Wherever he was stationed, and he was stationed at a lot of places from Newcastle to Bourke petty crime dropped to near zero in a very short space of time. He didn’t worry too much about charging people or respecting their “human rights”; he just took the whip to them and ran them out of town. He was a very good horseman and rode everywhere up until he retired around 1930.
It’s very cool, no, it’s cold here this morning – as it tends to be in winter when you live along the western side of the Snowy Mountains National Park. I’m hoping the mists will clear and the sun will emerge so that I can get on with the little bit of painting and replacement of the barge-boards in on my last renovation project.
I still find it so difficult to believe that this s really happening to me. It seems like some sort of nightmare that I’ll wake from at some point. I know, intellectually, that it’s all true but on the emotional level I just can’t accept that I’ll shortly be going to that big workshop in the heavens. Sometimes I find myself asking, “why me”? And then ask myself, “Why not me?”
I recently read that about 3100 new cases of this particular cancer are diagnosed in Australia each year. So that means about 9 people get the same horrible diagnosis and prognosis as me every day of the week. I had a great mate, Jim, a fellow I house-shared with 1971-1974, who died of this exact disease in 2009 and he was a year younger than me; and another fellow I knew well, Steve, who was a great mate of my brother-in-law, who died from it about 5 years ago and he was 7 years younger than me. When Jim died he still had two sons in Primary school.
Thanks everyone at MM for your kind thoughts and encouragement. I’m off to Albury Base Hospital to have a “subclavian Portacath” inserted in my shoulder. This thing is inserted into an internal vein so that they can administer the chemotherapy starting as from 29 May.
Winter seems to have come on early this year. It’s just after 6:00am and about -2 and ink-black outside. I have to drive about 160km to the hospital. Luckily I seem to have recovered quite well from my recent surgery and am feeling quite fit.
I desperately want to get away from the hospital early tomorrow so I can make it to a polling booth and vote against Shorten and the socialists. I am so hoping that, on Sunday morning, Scott Morrison is still Prime Minister.
ONE MORE SUMMER
My apologies for not keeping MM readers up-to-date with my struggle against Stage 4 cancer of the pancreas. One of the costs of living in a rural location, a little patch of paradise to me, is that we don’t have high-speed broadband nor do we get unlimited data. I have a satellite connection but the best plan I can get is for 70 gigs a month. It would seem that my grand-daughter hooked her x-box up to the WiFi, which then proceeded to down-load games, and used up every last byte of my monthly data allowance. That’s why I have been rather quiet this last 2 weeks. I must admit, I was positively furious at the time; but she didn’t do it on purpose and the month has started so everything is sweet again.
It’s now been about 17 days since I got out of hospital and saw the oncologist. In that time, I have completely recovered from having my gall bladder removed and experiencing the worst few days of my life. The pain that Thursday, 2 May, was indescribable and I truly thought I was going to die that day. Indeed, when I got to Corryong Hospital, I asked the doctor to simply pump me full of morphine and let me go to eternity. She didn’t. Instead they did pump me full of morphine, put me in an ambulance, and sent me to Albury Base Hospital where, after a CT scan, they diagnosed a “necrotised” gall bladder. How that happened no-one knows but I suspect that it was caused by a liver biopsy I’d had done a few days before. I think that doctor knicked my gall bladder and that’s what caused the massive infection and subsequent days of abject misery.
Today, despite it being bleak and cold, as the Snowy Mountains can be, I feel perfectly fit. I’ve regained my appetite and have almost no pain – just the usual aches and pains and occasional twitches. It’s hard to reconcile how I feel today with the diagnosis I’ve been given. It just doesn’t seem real. One of the great ironies is that, while I was in hospital, and forever having my blood pressure, heart rate, oxygenation and blood tested they actually told me that I was in very good, even robust, health for someone of my age – well except for having an aggressive and always terminal cancer.
When I had that session with the oncologist, Dr Eek, who explained to me the course of treatment i.e. chemotherapy I must admit that I didn’t pay much attention. Perhaps I was just overwhelmed by it all – all those possible side effects and the sorts of things that can happened to me, especially septicaemia, that’ll kill me much faster than the cancer. They gave me stuff to read about chemotherapy and my particular flavour of cancer; but I haven’t read any of it as I find it all so depressing. I have chosen to ignore all that; go ahead with the chemo and see whether I’m one of the lucky ones who survives it with few, if any, side effects. I figure that, as I’m otherwise quite fit, it may help me to endure this treatment without much in the way of side effects. He did tell me that some of my hair would fall out – which is hardly going to matter as I’m already almost completely bald and always get a No#1 buzz cut of hair and beard. No-one will know the difference.
Since I started feeling better, I’ve been working on my great summer project. I live in a big old farmhouse; a farmhouse that started out as an average sized house, but previous owners added on some extra rooms as well as a verandah on three sides. The verandah is about 13 squares; bigger than a townhouse I had in Canberra 17 years ago. Whoever built it decided, for reasons I can’t fathom, to have the verandah at the north and south extend 1.5m beyond the roof line. As a result, it was open to the weather, the rain, the frost and blistering summer sun with the result that the bearers, joists and decking had all become water damaged and were suffering from damp rot. It’s taken me over 6 months, but I have managed to finish replacing all the damaged timber as well as constructing a roof that extends 1.5m beyond the north and south verandahs. I did all the work myself; made all the steel posts, trusses and so forth. I think I mixed and poured over 3000kg of cement to hold the posts in place; used hundreds of Tec screws, over 6kg of nails and about 250 lineal metres of decking plus all the 4×4 and 4×2 bearers and joist. It’s all finished and painted now and not a drop of rainwater lands on it anymore.
I’ve also busied myself with a few other little maintenance jobs I’ve been putting off for years. I’ve been getting this place in order just as I have been getting “my affairs” in order.
I went to see my lawyer and updated my Will; also got certified copies of “Enduring Guardianship” and “Power of Attorney” documents for the kids. I’ve sold all my investments and converted everything to cash that I am giving to my four beautiful children. I’ve also changed over the phone, electricity, internet, and any other bills I could think off into my eldest daughter’s name – she and my grand-daughter are going to stay on here after I go to eternity. I’ve also ordered an 8kw solar system that my electrician today told me will be installed and operating by the end of June. The cost of electricity is here is just absurd. There was a time when I’d be aghast if I got a quarterly bill over $400 – now I’m delighted if it’s under $1,000. My bill for last August-November was a $1,550! My electrician, someone I’ve been dealing with since I came here in 2003, tells me the solar system should “smash” the bills I’ve been getting by 75% at least … well for 9 months of the year. We tend to get a lot of winter fog here that can sometimes last for weeks. I’m in a valley with a number of creeks and the fog just sits here – while just 7km away I can drive through thick mist and suddenly burst into brilliant sunshine at 600m.
I am due to start chemotherapy on Wednesday, 29 May. I try not to think about it because, if I do, I become very frightened and very despondent. I have this “subclavian Portacath” they installed Friday week ago and that’s apparently where they’re going to hook up the pump for the “toxins” they think will prolong my life to a greater or lesser extent. Dr Eek did tell me he had one patient, with the same diagnosis, who lasted a bit over 5 years. The chances of that happening are 2.5%.
All I want is just one more summer. To see my fruit trees bloom again in spring; to hear the buzz of the bees; to have my extended family here for Christmas; to sit on my newly weather-proof verandah and enjoy the scent of my roses and the jasmine.; to watch my grand-children frolic in the swimming hole with my old Labrador and Karabar terrier. Just one more summer – that’s my goal; that’s my only goal.
One of my GPs at Corryong, a young and very attractive Chinese lady, told me I should prepare a “bucket list” and that, should it come to it, I can refuse the chemotherapy (should it become too much to bear) and opt for “palliative care” at home or wherever I want to go. She said palliative care would control all my pain, and pancreatic cancer is apparently very painful towards the end, but that I wouldn’t need to be in hospital until I need “terminal care”. Doctors really know how to cheer one up!
The truth is: I don’t have a bucket list. I’ve been overseas, admittedly more than 40 years ago, and I have no desire to go again. I don’t like sitting on planes for 20+ hours; hate living out of a suitcase (I had plenty of that with the job I had); hate eating in diners and restaurants 3 times a day; and hate being a stranger in a foreign country. So, I won’t be going OS. I don’t want to jump out of an aeroplane or bungy jump off a cliff or float around in a balloon. The only things on my bucket list, if you could call it that, is to go fishing in Tasmania with an old mate come the springtime and to have that one last summer here.
My old mate, Mick, has just bought a camper van and he’s in the process of fitting it out with all the latest conveniences. We first met in March 1970 when we were both junior clerks with the then Bank of New South Wales. Was that really nearly half a century ago? In any event, I worked at Katoomba branch and he worked at Leura branch – but we shared a room, with another bloke named Bob, at the Imperial Guest House in Lurline St, Katoomba. It was an ancient 2-storey weatherboard “Private Hotel” and the only heating was a kerosene heater in the TV room and the reading room on the ground floor where there was also the dining room and a ping-pong table.
Our room was on the upper floor and had a balcony facing onto Lurline Street. It was so cold in that room that the jug of water provided by the landlady was frozen solid nearly all that winter of 1970. If you wanted to use an electric blanket, and some residents did, she charged you an extra $1/week – but there were no power points in the rooms, so the hallway had extension cords and power boards from the few power outlets there were. Despite all that we had a great year and many a night carousing at the Carrington Hotel, Gearins Hotel, the Family Hotel and many a Sunday afternoon at the Road Bar of the Hydro Majestic at Medlo Bath. I fell madly in love a couple of times that year; but with one girl in particular. I’d just turned 19 and she’d just turned 17 and she was an angel come to earth – well I thought so at the time. I remember with such clarity one night from the beginning of September 1970. I was with her, it was snowing, and we were “making out” as the Americans say, and my room at the guest house was filled with blue light from the neon sign on the roof. Was there anything better than to be young, to be in love, and to have your whole life before you? Thinking of that I remember the lyrics from “Me and bobby McGee” i.e. “I’d give all my tomorrows for single yesterday.”
We moved on from there, lost contact for a decade or two, then found each other again – and, apart from being a lot older (and looking it) nothing had changed. We still carry on like we did when we were 19; laugh at the same jokes; remember all those good times we had 1970-1975. Maybe I’ll get to go fishing with Mick in Tasmania and looking for Lasseter’s Reef in the outback. I hope so.
Given that, at this point in time, I am pain free and feel quite well, it seems just so surreal that the chances are that I’ll probably die very soon. The doctors told me to have no more than 3 standard drinks per day – but my son and middle daughter have brought me some “gifts” i.e. bottles of Talisker, Macallan, Jamesons, and Proper 12 Scots and Irish whisky/whiskey. The way I figure it, once this chemo starts on Wednesday, I won’t be able to have a drink, so I’ll ignore the edict of 3 standard drinks a day until then. I like my whisky/whiskey with plenty of ice, so I figure it’s just flavoured water and probably does more good than harm. I once read that every bottle of Irish whiskey, made from the waters of Ireland, contains perhaps 50 molecules that once passed through the bladder of St Patrick – so maybe it has some miraculous healing powers.
Apart from that, a few whiskies make one more accepting of one’s fate.
I have given some thought to what is beyond this life. I don’t believe, indeed I’m 99% sure, that there is nothing after death; just like there was nothing for the billions of years that we existed as atoms and molecules before they, miraculously, assembled themselves into us. I once had an idea that time was like a giant roulette wheel, an endless loop, and that it might be possible to be born again; reborn into the present, the past, or the future. I’ve often had the feeling, as many of us have, that I have lived before in a different time. Perhaps it’s just a quirk of the mind and isn’t real but sometimes I’ve had visions, if you could call it that, more like a snapshot really, of being someone else and living a very different life in a very different place. Has anyone else ever felt that? Perhaps the Buddhists are right about an endless cycle of death and rebirth until we reach Nirvana? I guess I’ll know sooner rather than later.
I don’t feel sorry for myself. I’m not sitting around here weeping and asking, “Why me?” I’m not beating my breast or gnashing my teeth, and neither am I praying or begging the Sky Fairy for forgiveness and a miracle. I won’t be going to Lourdes and bathing in the pool there in the hope of a miracle. All I can do is put my faith in the miracles of modern medicine, that’s already saved my life 3 times in the last 6 months (I got pneumonia last December as well as what’s happened since April) and hope for the best.
I have no complaints about my life, no regrets. I’ve been very fortunate, very lucky … so much luckier than probably 99% of people who have ever lived or are alive today. I’m one of the very few people who ever achieved everything they ever wanted from life. There was never a time I didn’t have a roof over my head; never went hungry; never went to war; enjoyed robust good health until recently; took advantage of our education system and went to University and learned how to think and write; went to TAFE and became a qualified oxy and electric welder; learned carpentry; small engine mechanics; basic appliance electronics; brick laying and paving. I’ve been a student for most of my life. I had better than modest success in my various careers as a High School teacher and then as a Public Servant. I achieved my youthful dream of owning my own Pub with a juke box and pool table; and I retired at 55 in 2006. I retired to these few acres of creek frontage 40km from the nearest town, 2.5km from my nearest neighbour. I dropped out of society and sought solitude free from conflict and society generally. I have four children and five grandchildren (so far). I have known love and known rejection; I have been a winner and a loser; I have experienced great happiness and heartbreak; and yet I found great peace and contentment. I have watched the seasons come and go, the freezing cold of winter and the snow on the hills, the baking heat of summer, the beauty of the autumns and springs. I have no regrets. I’ve lived a very full and exceptional life.
All I want now is one more summer. Just one more summer.
I’ll keep you all informed of how I react to chemotherapy. I’m due to get the first treatment on Wednesday morning. I think I fear that more than I fear anything else. But it offers hope and that’s all I have left.
UPDATE 5: 03.06.19.
Is there a word that engenders more fear than the word “chemotherapy”?
What it means is that you have a cancer that’s gone beyond any surgical cure and, possibly, your last hope is that a collection of “toxins” will kill your rapidly growing cancer cells while not killing too many of your good cells. The intent is to stop the cancer growing and, hopefully, extend one’s life for months, years or even result in a complete “remission” – if not a “cure”. If the toxins kill too many good cells, then you can expect a long list of possible side effects. Sometimes the side effects of chemo can be so severe that people just refuse treatment and opt for a pain-free exit from this life. We’ve probably all heard of, or known, people who have done just that; while we’ve also probably heard of people, or known them, where the chemo hasn’t caused unendurable side effects and they have beaten their cancer and gone on to live a normal life.
When you are first told that the only hope you have is chemotherapy, and you’ve heard all these stories about side effects, the first response is blind fear. Well it was for me. I had no idea what was involved or how it would be done or how I’d react to the toxins. All those “unknowns”; and there’s nothing quite as frightening as the fear of the unknown. When I was first told I had to have chemo (my only hope) I felt like a child lost in a forest at night – all those strange and frightening noises; wondering if some vicious wild animal was about to devour me; and the impenetrable darkness all around. I didn’t know what to expect and felt like I’d just been eviscerated.
I had my first chemo session on Wednesday, 29 May 2019, and, thankfully, it wasn’t nearly as terrifying as I’d imagined. I had thought they were going to attach a pump to the Portacath and that it would take maybe an hour and then I could go home – and I thought that because I hadn’t read the ream of paper they’d given me. Instead I was hooked up to a drip and sat in one of those electric recliner chairs for 5 ½ hours and then they attached the pump and I went home. It must’ve been terribly boring for my middle daughter who’d flown down from Brisbane to be with me; but she didn’t complain.
The chemotherapy I am getting is called “Folfirinox” which contains four toxins: Oxaliplatin, Irinotecan, Leucovorin and Fluorouracil. The list of possible side effects contains:
Breathing or swallowing problems
Nausea and vomiting
Diarrhoea (early onset)
Taste and smell changes
Mouth pain and soreness
Tiredness and lack of energy
Diarrhoea (late onset)
Skin colour changes
It’s now been three days and the only side effects I’ve suffered so far have been tingling and numbness in the hands if I touch anything cold, a little diarrhoea and a little nausea. The hand tingling only lasts a few minutes but is quite uncomfortable. I’ve managed to get it a few times from washing my hands and from the cold handles of a wheelbarrow. This reaction to cold can also happen in the mouth and throat should I drink anything colder than room temperature – so I’ve been drinking my whiskey with a little dash of warm water. The throat reaction can also happen as a result of inhaling cold air but, so far, I’ve escaped that.
The staff at the Border Cancer Centre were excellent. What surprised me was just how many people there were getting chemo on Wednesday. They must have at least 20 chairs and they were all full all day. Some people were only there for an hour or so while others, like me, were there for most of the day. I was surprised by the numbers; I guess that everyone knows that cancer happens, but it doesn’t really register just how many people do get it until you find yourself in a chemo chair as well and see the numbers.
The pump they gave me was a little bottle with what looked like a balloon inside it. That was connected to a tube that was attached to the Portacath implant. They gave me a “bum-bag” in which to keep the bottle and that I had around my waist and under my beer gut. It was a bit inconvenient insofar as pulling on a pair of jeans but otherwise caused me no distress.
After 46 hours I had the pump removed. I went to my local GP at Corryong and the Practice nurse removed it efficiently but only after she’d obtained a big plastic bin for “hazardous” medical waste. At the Cancer Centre they’d “educated” me on “toilette etiquette” and that is that I have to sit down to piss and make sure the lid is down before flushing; that if I throw up I have to vomit into bags they gave me and then put that in another bag and dispose of somehow – I guess I’ll burn it in the incinerator having no other method of disposal out here; make sure no-one uses my toothpaste or any crockery or cutlery I’ve used. I was also told to use condoms if I was “sexually active”! I wish! Sadly, that activity hasn’t been much of a feature of my life for quite a few years now.
Much to my surprise I learned that the toxins used in chemo come out in every bodily fluid, in all excrement, including saliva and that it can become an aerosol when a toilet pan is flushed. This aerosol can be absorbed through the skin of others and cause nasty things to happen. Luckily my place has two toilets and two bathrooms so I have banned everyone from using my ensuite or the towels in there or the shower or anything else that may be contaminated.
At the Cancer Centre they also gave me a fully charged needle to stick in my belly come 1:15pm today. It’s some sort of immune booster that stimulates the red blood cell production in the femurs. When I saw my GP yesterday, I asked if I could come over to the emergency department and get a qualified nurse to give it to me and give my eldest daughter a lesson on how to do it. It all sounds quite simple, but they did tell me that it’s possible for the needle to come apart if it’s not pushed with the proper pressure and I could lose the contents by accident. Given that they only gave me one and it’s vital to fight off possible infection I don’t want to stuff it up. Better to get a professional to do it. Apart from that, I have a serious aversion to needles (never have one at a dentist) and just don’t think I’m up to sticking it in my own belly.
Dr Nick, my GP, had a long chat with me after the pump was removed. He explained that the chemo wasn’t a “cure” but was part of my “palliative care” in that the intent was to stop, or slow, the growth of the tumours and extend my life. How long that will be depends on a very long list of factors – more factors than you need to predict the weather a century from now I suspect. He did tell me that I am looking well and quite fit at the present time.
Despite all the best efforts of my doctors this disease will kill me, and Dr Nick explained what will almost certainly happen. And that is that I’ll start losing weight (though I’ve gained a bit since I got out of hospital) and I’ll lose muscle mass and become increasingly frail. As I become weaker, I’ll find it increasingly more difficult to care for myself. My youngest daughter has quit her part-time job and is coming here to be my full-time carer – but I’ve insisted she continue with her University studies to become a Primary teacher – she only has a few units to get so she can study here and, hopefully, get a placement in one of the local schools. She is making a big sacrifice. In any event, with her help I may be able to stay at home until close to the end. The frailer and more unsteady on my feet I become the greater the burden it will be on her and my eldest daughter and my granddaughter (who have been living with me for a few years now). My eldest daughter works on a local dairy and does the morning milking, starts at 7:30 and is usually finished by 12:30-1:30. There’s no point her quitting as she needs the income and she can be here in the afternoons anyway. Qualified dairy-hands are becoming quite rare these days so there’ll always be work for her around here and along the Murray.
As time progresses and the level of my frailty increases, the day will come when I’ll need to unburden the girls and go into the terminal care unit at Corryong. Dr Nick told me it was the best one he’d ever seen anywhere. It’s a little 2-bedroom flat with a kitchen, ensuite and a private courtyard (where I’ll even be allowed to smoke!). Relatives and friends can stay overnight with me plus I’ll have the nurses on call 24/7.
He also told me that I can expect the pain to increase progressively but that pain is eminently treatable. I’m currently taking a drug called Targin which is a slow release oxycodone (Hill-Billy heroin) plus Endone (a faster acting oxycodone) when needed. He told me I as on a very low dose and that this can be increased by a factor of about 20. He’s also looking in to getting a special licence to prescribe medicinal cannabis to control the nausea I’m likely to get as well as for the pain relief and relief from the mental anguish I’m likely to suffer as the end draws near. It’s all very complicated getting medicinal cannabis and there are all sorts of laws and regulations that change from state to state. This complicated by the fact that I live in NSW but do much of my business in Victoria, including my medical needs. He also told me about a whole lot of services I can access – and all for free – including visits from the district nurse (but she/he’ll have to come from Tumbarumba because I live in NSW), counsellors, people who’ll drive me around and to Albury should it be necessary, someone who’ll clean my house. I won’t need most of it, or possibly any of it, as I think the system has been created to assist people with no family support network. Sadly, there are a lot of them.
I’m glad I had four children (1 boy and 3 girls) as without them I’d be truly stuffed; and I can’t imagine the loneliness others, without that support, must endure when something like this happens. I have been overwhelmed with the support I’m getting from family and friends – even my ex-wife came down for a visit last weekend, for my granddaughter’s 13 birthday, and stayed here. Our divorce was a bit nasty, but it was all 20 years ago and, with time and distance, everything fades to grey and it doesn’t matter anymore. There’s no point taking grudges to the grave. After the divorce I re-discovered myself and got a whole new life and, in retrospect, it was probably a good thing. After 26 years I think we’d tired of each other, grew in different directions, and there was little, or nothing left to hold us together. Such is life.
Despite all this a couple of things have happened recently that have given me much pleasure. The first was the election result and the nation-wide rejection of the Labor/Greens extreme Left platform that would have ruined this country in a very short period. The Socialists just can’t seem to grasp the lessons of history, and there’re plenty of them, that no country has ever taxed it’s way to prosperity; no economy, no business, can survive when its input costs are greater than its income; that there’s never been a time in human history when collectivisation or socialism has ever worked. It always fails and always ends up like Venezuela today. Once a government kills off private incentive the whole economy collapses like a house of cards. We’ve been saved from all that nonsense they were peddling about electric cars and shutting down coal-fired power stations, coal exports, mining generally, needing to shoot about half our cattle and sheep herds because they fart methane – and all the give-aways they’d promised without any way to pay for them. Maybe they planned to get the printing presses rolling and just print the money to pay for everything. Other countries have tried that, and I am the proud owner of a $100,000,000,000 (one hundred billion dollars) note issued by Mugabe’s Zimbabwe a few years ago. It’s completely worthless other than for curiosity.
The other boost to my outlook has been that the Penrith Panthers have won their last two games. I spent many of my formative years around the Penrith-Blue Mountains area and have followed the Panthers for the best part of half a century. My family used to live just two blocks away from the old Penrith Park and my Dad and I would often walk down there for a home game and then sojourn for a few ales at the old Panthers clubhouse. Many a good memory there.
Once again, my sincere thanks to MM readers for their words of encouragement. I’m hoping that my keeping of a journal on MM of my experiences with this disease may cast some light on what happens, and how it happens, and may remove some of the mystery around such things.
UPDATE 6, 09.06.19
It’s now been 10 days since I had my first chemotherapy session. I must admit that, leading up to it, I’d been terrified of the side-effects I’d heard about over the years and by the long list of possible side effects my oncologist warned me about. I expected to be mostly bed-ridden; stricken with nausea and diarrhoea; my hair falling out and being so fatigued I’d barely be able to feed myself or do anything else for myself.
That hasn’t happened.
I’ve had a few very minor side effects. Touching anything cold instantly causes tingling/pins-n-needles in my hands and sometimes numbness. But it doesn’t last long and isn’t terribly debilitating. I haven’t suffered any vomiting – just queasiness. Similarly, I’ve had no diarrhoea of any note – just what’s described as “loose stools” and occasional wind pains in the lower abdomen. I take anti-nausea and anti-diarrhoea medication occasionally, but it hasn’t been any great problem.
I haven’t had a fever, raging or otherwise, and my temperature has actually been a bit below the normal of 37c. I take my temperature three times a day with a flash digital thermometer and my biggest problem has been getting that to work early in the mornings. It’s cold here in the mornings and the thermometer doesn’t work below 16c! I have to warm it up in my pocket for anything up to an hour before it will work. Big old weatherboard farm-houses like mine, despite having wall and ceiling insulation, are hot in summer and cold in winter. I have a couple of reverse-cycle air-conditioners and a slow combustion heater but it’s still bloody cold inside first thing in the morning. I’ll see if I can find the instruction book and work out how to set the timer, so it comes on automatically around 5:45am.
The wood heater, a “Masport Colorado” really pumps out some heat but it takes an hour or two to get a good bed of coals going. I don’t usually light the wood fire until mid afternoon as firewood is nearly as expensive as electricity these days – though my local firewood supplier does a pretty good deal i.e. $220/load which is about 1500kg and it’s all well-seasoned red gum or yellow box and all split. I still have a few tonnes of wood lying around here from a couple of river red gums (widow makers) I had cut down about 18 months ago. They were dropping big limbs and becoming a danger. It’s good wood but still a bit green. I cut it all to size at the time and have burned most of the small stuff and what’s left are the big pieces from the trunks that are up to nearly a metre in diameter. They’re almost impossible to split with a block buster and I can’t swing one now anyway. I’ll wait for my son-in-law to pay a visit and he can swing the block-buster for a few hours. He’s something of a fitness fanatic and loves swinging the blockbuster and will do it for hours. I might help him out a bit. I have an old chain for the chainsaw and might sharpen that to a ripping angle and cut some split lines in the big blocks.
My firewood supplier, Big Brett, is the epitome of the hard man of the Snowy Mountains. He’s a huge bloke; probably 6’4” and 20+ stone; has a shaggy greying beard; wears a stained leather hat and I’ve never seen him without it; big boots and a stained over-coat and always travels with about half a dozen dogs. He has a few acres up around the snow line and lives by himself, apart from the dogs and his other animals – well he does now since he got rid of his last live-in girlfriend. She didn’t take it too well and came back and set fire to his place, but it didn’t do a lot of damage. He was philosophical about that and said she was a bit angry about being told to go home and no great damage was done. He does many things in what was once described as “rural pursuits”. He’s a drover and I often see him driving cattle from one place to another – and often for very long distances. He has a horse and all those dogs for both droving and his other occupation of being a professional shooter. He has a licence to cull kangaroos and shoots wild dogs, foxes and feral pigs. He’s also a deer hunter and reckons there’s nothing as good as a feed of fresh venison. He does his own butchering and meat smoking. He drives tractors, headers and harvesters as the seasons require and spends the summers cutting and splitting anything up to 200 tonnes of firewood that he then sells come the cold weather. He’s also a damned good fisherman and regularly catches big Murray Cod. When I owned the local Pub, he came in one day with some photos of two big cod he’d caught. I asked him where he’d caught them and he replied, “I got ‘em both in the top lip!” He’s quite a character and even has his portrait in the bar at the local Pub these days.
I bought a load of wood from him a week or two back (cash only of course) mostly because I wanted my eldest daughter to meet him and know who to ring should she and my granddaughter need firewood in the future. Big Brett said he’d look after them and I know that when he gives his word, he keeps it.
Insofar as my chemotherapy is concerned, well it hasn’t had any great effect on me at all. I’ve still been doing what I normally do around here. About a year ago I had an old WeatherWall air conditioning unit replaced by a new Mitsubishi inverter one. I got the electrician to remove the old unit that must’ve dated from the early 70s. The problem was that, to install that old unit, required cutting two holes, both about 18”x18”, in both the outside weatherboard wall and the inside plaster wall. I did a quick patch job at the time but this week I’ve been busy doing a permanent repair job and trying to “invisibly mend” the outside wall. The biggest problem I’ve had doing that has been the numbness in the hands when handling tools. I can’t seem to master using a tape measure and a pencil and square while wearing gloves, so I take them off and then get the numbness. In any event both holes have been patched, inside and out, and the only remaining problem has been that it’s too cold for paint to dry.
On Tuesday I have to go to the pathologist to have blood tests, ring the oncologist that afternoon to see if everything is OK and, if it is, go over to the Border Cancer Centre on Wednesday and spend another 5-6 hours getting my second dose of chemotherapy. I am hoping that progressive doses don’t increase the side effects; I’m hoping they reduce from not much at all to nothing at all.
I really feared chemotherapy but there was nothing to fear. It’s the unknown where one imagines the worst possible outcome that causes such eviscerating trepidation. But the reality is that it just isn’t all that bad – well, not for me … so far.
UPDATE: 7 30.06.19
CANCER AND CHEMOTHERAPY – AN UPDATE
About a month ago I wrote about how well I was coping with chemotherapy and how the side effects were minimal and of no great inconvenience. I had my second chemo session on 12 June and things were very different this time around. On top of the chemo I managed to contract a throat infection, laryngitis, with much production of phlegm and other assorted disgusting things.
Well … these last few weeks have been a journey through increasing misery and illness that greatly effected my “quality of life”. The biggest issue was that the occasional “queasiness” turned into constant nausea and, a week after treatment, to regular vomiting. There is nothing quite as miserable as carting a bucket or a spew-bag with you everywhere you go. There’s nothing to compare with that feeling that your stomach is like a little lake of water in a storm – sloshing here and there and eventually coming up in a sticky, smelly mess.
I went over a week with barely anything to eat. My mouth was so dry, almost free of saliva, that any food just stuck to the roof of my mouth and to my inner cheeks. I had to try to swallow, even water, against stomach/throat contractions that wanted to expel whatever I had in my mouth before it could go anywhere. Then there was the diarrhoea! And the coughing. And the wind! Oh boy, the wind! I remember once reading about a 19th century showman who could control his flatulence so well that he could actually play wind instruments with his bum. He appeared in many Royal Command performances and literally farted in the faces of all the crowned heads of Europe. With the amount of flatulence I developed I thought I might buy a French Horn or a trombone and see if I could go on “Australia’s Got Talent”.
Since I was diagnosed on 24 April I’ve lost about 25kg in body weight and am now a svelte 72kg. After many years of “sensible eating” and getting plenty of aerobic and strength exercise – none of which made much difference – I’ve finally reached my “ideal” weight for height and whatever else. Yes, ladies and gentlemen, I have successfully defeated obesity. If you want to lose weight quickly and keep it off, just get a touch of pancreatic cancer and your problems will be solved swiftly.
In any event, I became so ill that my 3rd chemo session was called off. Instead I spent about 6 hours in the chemo chair being given drips of steroids and re-hydrating solutions. It was a long and boring day, but at the end of it I felt like I could take on Jeff Horn … well maybe not him unless I had the Adler 12 gauge in hand … but anyway I felt alive for the first time in over a week. Comparatively speaking, I felt great. It’s amazing just how ill dehydration from vomiting and diarrhoea can make you feel – and that coupled with the weakness that comes from a near-starvation diet.
If I have a complaint about getting chemo at the Border Cancer Centre, it’s the fact that it is soooo boring. There is a long row of chairs, those electric recliner type of things, and everyone sits there with their drips and the machines that count the flow and have a timer as to when the bag will be empty. There’s no TV, no internet, no radio, not even any magazines. The lights in the oncology unit are extremely bright and seem to have been placed to shine directly in one’s eyes. So I sit in the chair, they stick a needle in my “Portacath”, and there I sit, staring at the nurse’s station and the toilet door for anything up to seven hours. The only thing of interest is the timer on the drip machine and how time seems to slow almost to a stop. While I was sitting there, bored rigid, I remembered that wonderful book (one of the many that changed my life) Joseph Heller’s “Catch 22” wherein a character named Dunbar deliberately seeks boredom because he believes that you live longer if you’re bored all the time; that time moves more slowly. Dunbar was right!
I saw my GP at Corryong yesterday and he suggested I should think about quitting the chemotherapy. He said that, given my week in hell caused by both the chemo and the laryngitis, there was a chance the chemo would kill me more quickly than the cancer. As he explained, the chemo destroys one’s immune system and an otherwise minor throat infection can quickly become a major health issue. He also explained that the chemo wasn’t a “cure” but part of my “palliative care” and was intended to stop (hopefully) or at least slow the growth on my tumours. My oncologist told me he had one fellow with my cancer who lasted over 5 years but eventually succumbed to septicaemia caused by a rogue infection.
The good news was that my last set of blood tests showed a reduced number of “cancer markers” whatever they might be. But I figure any reduction in anything has to be a positive.
I had determined that I’d endure at least 6 chemo session before deciding which way to jump vis-à-vis continuing for the full 12 session course. It’s the only hope I have, however slender it might be (but people do win Powerball) and I want to give it every chance of … “delaying” my enrolment day in the Terminal Care Unit. After 6 sessions I’m due to have another PET scan to see if there’s any measurable change. If the tumours are bigger there’s no point carrying on; if there’s no change it means it’s working to some extent; if they’ve shrunk it means I’ll have another summer.
I’m due to have my 3rd chemo session on Wednesday 3 July. Hopefully this “time-out” for an extra week and the antibiotics I’ve been taking will have beaten the throat infection and I won’t get the vomiting again. The worst thing about that week of vomiting was the “Midnight Special” where I’d start spewing around midnight and keep spewing every 20-40 minutes until 2,3, 4 or 5 in the morning. It’s bloody cold here and sitting up through the dark frozen nights with just the silence and a bucket on my lap was depressing to say the least. I found myself feeling sorry for myself a few times. At least my old black Labrador kept my feet warm.
While I was sitting up I did some internet research on pancreatic cancer and the “symptoms” that lead to it and the, almost always, fact that diagnosis comes too late for anything like a cure. I had them all:
• Sudden weight gain for no apparent reason (I went from 93kg to 125Kg in 3 years despite not eating any more than usual and getting lots more exercise);
• Sudden onset of arthritis in the knees and hips (I used to ride my Mountain Bike 20-50km a day but, almost overnight, my knees swelled and became very painful as did my right hip that meant I couldn’t get my leg over the bar of the bike);
• Sudden onset of Type-2 diabetes with no prior personal or family history and no history of high blood sugars;
• Recurring bouts of reflux (I thought it was because I grow my own volcanic chillies and make my own paste, sauce and ground chilli that I add to everything – I really like hot food – and thought I’d just overdone it) – hence the occasional burning reflux;
• Dark urine, which came and went with me, and that I attributed to taking Turmeric pills for arthritis – but it must have been the tumour in the early stages narrowing my bile duct;
• Sudden weight loss – after I was diagnosed with Type-2 diabetes I completely stopped using sugar in any way, stopped eating carbs as much as possible, cut out fatty foods and processed meats and upped my exercise by buying a few truckloads of cement mix, dirt and brickies sand and undertaking a number of construction projects that I did manually (I couldn’t cycle but I could push a wheel barrow and wield a mattock and spade). I even installed a cricket pitch that was great until the rain stopped and summer hit with a fury and killed the grass. I went from 125kg to 98kg in less than a year and the doctors congratulated me on beating diabetes. My blood sugars have been normal for most of the last 3 years;
• Fatigue for no apparent reason. About once in every 10 days I’d wake up feeling as weak as a kitten and just unable to haul my old arse outside to do anything. I figured it was exhaustion from doing too much heavy work the day before; and
• Vision changes. I’ve been short-sighted since I was 21 but over, what seemed like just a few weeks, I went from that (no way I’d have passed a driver’s eye-sight test without the specs) to having perfect long-sighted vision. The vision reverse is such that I now can barely read a book unless I have a magnifying glass or hold it at arm’s length. I don’t need glasses to drive any more and can see much better without them. It’s helped greatly with my little hobby of target shooting with small bore rifles. I’ll be getting some proper reading glasses in a week or two.
Taken individually, all those symptoms mean nothing, but a little passing inconvenience and all my GPs dismissed them as “just getting older” and as “metabolic syndrome” from advancing age. Over a five-year period, I guess there was no obvious reason to suspect anything else. For 98% of the time I felt, fit, robust and strong. Taken together, though, there’s an obvious pattern of things going awry – though they all seem completely unconnected and individually innocent. My GP apologised to me if I thought the medical system had let me down; but as he said, all these are common and passing ailments and they’re ( GPs) told they mustn’t speculate on pancreatic cancer and start ordering CT, PET and MRI scans willy-nilly. That would send the health budget bankrupt, unduly frighten people, and probably prove nothing. The pancreas is an organ that can’t be felt during an examination and can’t be seen on x-rays; it’s almost invisible to everything but the most sophisticated scanning devices. That’s why pancreatic cancer is called the “silent killer” because, by the time the first real symptoms appear (like the jaundice I got in April), it’s already “game over”.
On the upside, I actually ate a “normal serve” meal last night and didn’t suffer any nausea or vomiting. How wonderful it was to be able to eat!
Everyone’s got to die sometime. I surely don’t want to as I have plenty of things I need to do including a lot of doing nothing much at all.
If the sun comes out, I think I’ll sit on the verandah with my .22s and .17s and fire-off a hundred rounds or more at paper targets at 35m. How many other people can sit in their backyards and shoots targets on their own range? I have a 100m range as well as the 35m but that’s in an adjoining paddock and I use that mostly for big calibre centrefire rifles. The ballistics of .22s and .17s produce so much drop and wind deviation at 100m it’s a waste of ammo trying to hit anything smaller than a 44 gallon drum.