In November 2011, I decided to check with my local GP in Taree about
a rough patch of skin on the floor of my mouth. It had been there for some
time but wasn't getting any better. In fact, it was getting slightly worse.
I said to the doc, "It's probably nothing", but he didn't agree, and referred
me to a local specialist. She poked around a bit, and took a small sample
for a biopsy. The biopsy result was negative. Nonetheless, she referred
me to another local specialist, Dr Simons, who had surgically removed a
couple of my skin cancers. He took one look inside my mouth, said it was
beyond his field of expertise, and referred me to yet another specialist,
Dr Jonathan Clark, head and neck specialist, in Sydney.
Here's a paste from my Journal entry, 0051:
December 12, 2011. 1:30am at Taree railway station, I boarded
the XPT train to Sydney. I thought at that ridiculous hour no one would
be on the damn thing. Wrong! Before I could get to my allocated seat, I
had to pick my way through and over lots of sleeping bodies curled up on
the seats including mine! And to make it more difficult, all the train's
interior lights had been turned off. "Is that your seat?" a young woman
with a small child from the other side of the aisle asked. Her husband
was sleeping on MY seat! "Hey, Goldilocks!" I felt like saying, but the
woman woke him and, after lots of muttering and grumbling, he went back
to sleeping on the floor at his wife's feet. It occurred to me later that
I could have asked him to stay where he was but... well... I figured maybe
that wasn't such a good idea after all.
Anyway, the trip was not pleasant. It was black as pitch outside so
I couldn't see anything through the windows, and I had two heavy snorers
nearby, which meant I couldn't nap even if I tried - which I did. AND...
the undercarriage had a squeaky spring.
A few days prior to booking my train trip, a Taree surgeon checked out
a lesion in my oral cavity (the thing you and I commonly refer to as the
mouth) which, following a biopsy, had been declared non-cancerous. But
he was suspicious, and refused to be the surgeon for its removal. Instead,
he referred me to a head and neck specialist in Sydney who happened to
have an early appointment opportunity. It was all a bit of a rush but I
decided to take advantage of it, and use my time in Sydney as an excuse
to take a bunch of photos of the old town. I had 7 hours between arrival
time and the appointment with the doc.
When daylight appeared about 2 hours out of Sydney, the train's windows
were being spattered with rain. Charming. Rain continued to fall all the
way. And when I arrived at 7am at Central Railway, you guessed it, it was
peeing down. I bought a one-day multi-pass on all Sydney's public transport
which cost only $2.50 (pensioner concession). Definitely the way to get
around! Then I took a train to Circular Quay where I figured I'd do the
obligatory pics of the Bridge and Opera House. But the rain kept falling
and it was miserable. I hung around for some hours, wondering what to do,
but found a couple of opportunities to get some pics UNLIKE you normally
see on postcards and brochures of the Harbor City. I also grabbed a coffee,
and egg and sausage McMuffin at McDonalds. I haven't been to Maccas for
umpteen years, so the coffee was a bit of a challenge. I couldn't get the
bloody lid off! Then I realized you were supposed to drink the coffee with
the lid on, through the little hole in the top. Roite. Bloody country yokels.
At about mid morning-ish, the weather cleared a little. It was still
cloudy and sprinkling a bit, but I decided to take a walk along the covered
walkway to the Opera House. That was fortuitous because it provided an
opportunity for some interesting pics prior to most lunchtime eateries
and other businesses being open. There were also only a few workers/pedestrians
about. Wet conditions and no sun meant I had to look for alternative photo
opportunities... anything that might be vaguely interesting. Luckily, I
did find a few.
I headed back to Circular Quay and got a few shots of the local buildings,
including the AMP inwardly curved skyscraper that I photographed back in
the '60s when the Opera House was still under construction. The weather
had cleared a little more by this time, so I figured I'd take a ferry over
to Kirribilli for some shots looking back at the city skyline. That's when
I met Captain Jimmy Cook II, a lovely bloke with whom I chatted for quite
a while about things Cookish, Endeavourish and ahoy there matey-ish, etc.
"You can't take photos of me unless they appear on Twitter," he said, but
I explained that I was a good friend of the original Captain. "Oh, well
that's different, then." "He was very tall you know... 6' 3", I said. "No
he wasn't, that's a fallacy. He was only 5' 4"." "No, he was well over
6 foot. I've seen his cabin and it has a very high ceiling. Have you ever
been on board the Endeavour? The replica?" Well, he hadn't, so I had him
against the ropes. Hehe. But he let me take a couple of pics, anyway, and
I told him about Red Bubble and also about Aussie Odyssey.
Sydneysiders are very friendly. Earlier, a lady approached me and said
g'day. She noted I had a camera around my neck. "Don't worry about the
rain," she said with a smile, "at least you won't get any shadows." Then
she gave me a little flyer. "You might like to read about the future according
to the Bible." Oops! A religious nut! "But the Bible is all about the past,"
I argued as I handed the flyer back to her. "The future hasn't happened
yet." She wasn't prepared to waste time with a cynic so she toddled off
into the drizzle and wished me a nice day.
As I waited on Circular Quay station for a train to Newtown, a bloke
wandered up to me and asked if I was a tourist... noting my red Buckeyes
Ohio State University long-sleeve shirt and camera around my neck. "Not
really, mate. I'm from Taree but I lived in Sydney before that." We got
to chatting and he told me about his work with computer art. His train
arrived and he wanted to travel with me to continue our chat but it wasn't
headed to Newtown where I needed to go. Pity really because he's been living
in Papua New Guinea for the past 20 years and I'm sure he had some fascinating
tales to tell.
I'd forgotten how many steps there are at Newtown station... with NO
escalator! By the time I got to the top, my legs were like jelly but I
had to walk all the way to the Medical Center, maybe a mile or so. I arrived
at a pub and stopped for a beer cos I was about 45 minutes early for the
doc appointment. Got a window seat and watched a Chubb Armored Truck arrive
just outside for a cash delivery to the pub... uniformed guys with guns
on their hips. I was tempted to whip out the camera for a few pics but
then thought no, no, no - not a good idea, Gary. The guys were giving me
supicious glances as it was! And the last thing I needed was to be sprawled
face down on the floor with 3 guns pointed at me.
And the main reason I went to Sydney? Well, the doc was a most pleasant
man but he didn't like what he saw when he took a peek into my "oral cavity".
He said the original samples taken in Taree were too small to get a reliable
biopsy result. He's convinced the lesion is malignant, so he took a few
more larger samples for another biopsy. I got a needle in the tongue (ouch!)
as well as a camera probe thingy up my nose to check my throat internals.
All seems clear in that area, but he said if the second biopsy proves to
be negative, he won't believe it. Hehe. He said the operation to remove
the lesion to the fullest extent will also include checking (and possibly
removing) lymph glands in my neck for signs of cancer. It's a serious operation
(or series thereof) which will keep me in a Sydney hospital for 10 to 12
days. Oh well... go with the flow, I say. And I'm not gonna worry about
My ex-neighbor turned up to meet me at the Medical Center and we went
back to the pub for a drink - his treat. I had a terrible time trying to
talk because there was a bandage thing in my mouth and my tongue and lips
were still numb. Nonetheless, I managed to throw a glass of white wine
down the screech without too much effort. Hehe. Lots of practice. Then
I decided to catch a cab rather than a bus to Central station in order
not to miss my train back to Taree. Good thing I did because the driver
was most interesting and even invited me to take his photo!
December 21, 2011. Dr Jonathan Clark phoned my mobile last night about
8:15 and said the results of the latest biopsy and scans revealed exactly what
he suspected - the lesion is cancerous and the nearby lymph gland is swollen. I
mentioned his interest in gardening and he said that's where he was, standing in
his garden at home. His office will contact me again early January and advise me
as to when the operation will take place, probably mid January. It'll be at the
Royal Prince Alfred hospital, Newtown (close to where I visited the doc's
surgery last time). Theater availability is at a premium there so he said he'll
have to ask the hospital for extra. So that's where I'll be for the second half
of January. How thrilling.
Paste from my journal entry 0052:
January 20, 2012. This little trip to Sydney wasn't supposed
to be on the Odyssey itinerary. It began in November when I alerted my
GP to some rough skin in my mouth, on the floor below the bottom teeth.
It had been there a while and hadn't bothered me, but I was nevertheless
suspicious. Sure enough, my GP referred me to an ear, nose and throat specialist
in Taree who took a couple of samples of the lesion for a biopsy, which
proved negative. However, she suggested I have the lesion removed by a
local specialist, David Simons. Simons took one look at it and said, "Sorry,
I can't help you." Instead, he referred me to a head and neck specialist
in Sydney, Dr Johnathan Clark. In December, I traveled to Sydney by train
where Clark investigated the lesion, suspected the worst, and took two
new samples for biopsy just to be sure. "Even if the biopsy does prove
negative, I won't believe it, and I'll operate anyway." A few days later,
another head and neck specialist, Dr Sydney Ch'ng, phoned me at home in
Taree to say that Clark would be unavailable for the operation to remove
the tumor but that she would take his place. She had several times before.
Fine with me.
January 4, I arrived at Royal Prince Alfred hospital in Sydney in the
afternoon, the day before the operation was due to take place, and was
shown to my bed. The other guys in the ward were a culture shock to say
the least. John and Sean swore like troopers - constantly - as if they
had something to prove, like a territorial claim on the ward or something.
It didn't matter who was in the ward; nurses, doctors, visitors or whomever,
the guys kept swearing their heads off. The other guy, Patrick, found it
all rather amusing and, I admit, after a while so did I. John and Patrick
weren't threatening anyone... just the opposite, both were friendly and
helpful, albeit colorful. So that was four cancer patients in the one ward,
all of Irish descent.
Sean had his entire office set up in his "bedroom" with the curtains
drawn - phone, laptop, racing form guide, etc. He was mostly into betting
on line.. horses, dogs, football, and whatever else moved, and watching
the overhead telly. He had testicular cancer, with one removed. Recently
the cancer had returned and was affecting his legs with some kind of painful
sciatica. He shuffled when he walked. He's 35.
Patrick had 2 tumors in his neck removed by radiation. He was free to
move around but still wore a feeding tube in his nose. He also had great
difficulty speaking. But he was a nice bloke, and very friendly. He was
aged about a year younger than me.
One of the male nurses got a bit chatty so I told him about the young
bloke I sat next to on the train. He was constantly on his mobile phone
talking to "bro"... everyone was "bro". It soon became apparent that he
was a graffiti "artist"; he kept talking about bulk buys of spray paint.
"No, I haven't got the 20 cans with me, bro, not on a fuckin' train. Besides,
I'm still on probation, bro... I'm a free man." Other little gems
I picked up were that his missus is moving some distance away which makes
it more difficult for him to visit his kids (I gather they're divorced
or separated). He wasn't too impressed about that and told "bro" that he'd
smash her face against a wall if she interfered with his visitation rights.
Charming. He also told another "bro", "We don't do crap, bro, we're writers"
(in regard to "quality" graffiti). At no stage during my eavesdropping
did I get the impression that this young bloke was very bright.
Anyway, as I told the nurse my story, and explained that such types
have a gang mentality - that they need to belong to a group or botherhood
to give their lives some kind of meaning - John interrupted and said, "I
belong to a gang. I was President of the Cronulla chapter of the Rebels
Bikie Gang for 25 years." So I guessed that explained the full beard, heavily
tattooed arms and Harley Davidson shirt. Anyway, we got to talking and
he told me some pretty amazing, if not horrific, stories. Here's one I
Googled about a police bust on several premises including the fortified
Cronulla clubhouse. John Devine's name is mentioned a couple of times.
John told me about his wealth... a couple of houses, tens of thousands
of dollars worth of diamonds and gold, a couple of Harleys, one worth $100,000,
several cars, a tattoo business, etc. John was wearing a solid gold ring
which weighed an ounce, and a solid gold chain around his neck which weighed
a couple of ounces. All his gold is solid, he told me. Nothing plated.
That evening, his family visited the ward and they looked perfectly normal.
They live in respectable suburbia at Hurlstone Park. I asked John what
the neighbors thought about his presence and he said no worries. A couple
who at first objected soon changed their minds when they discovered their
dogs nailed to their front doors.
John has only just married the mother of his sons. They've been together
over 30 years but only recently tied the knot because John's cancer (of
the stomach) is terminal. He only has about 6 months to live. "Mr Cactus"
he described himself to me. 3 months ago he was healthy and fit... a hundred
pushups, a morning jog around the block, no problem. Then he was diagnosed
with the cancer, and has lost 20 or 30 kilos in weight. He can't keep any
food down, and was puking big time - not a pretty sight, folks. He needs
a wheelchair to get around. He's 53.
I was tempted to ask John if I could take his photo but he looked so
sick and wasted I figured he wouldn't want to be remembered that way, so
I refrained. By the way, when I first entered the ward, John said, "Oh!
An Aussie!" The hospital was like the League of Nations, with just about
every nationality you can think of, especially amongst the nurses and doctors.
However most patients were Aussies. There's long been a shortage of medical
staff in Oz so there's been a lot of recruiting from overseas, mostly Asia
and the sub-continent.
I didn't ask John too many questions about his activities as a bikie
but I could easily imagine them. So it was quite touching when he
showed me a drawing and poem to his grandson. He depicted himself in his
leathers, riding his Harley with those tall handlebars through the heavens
at night, but surrounded by a halo of light. I didn't memorize the poem
but it was a message to his grandson (who is only 4) to remember his grand
dad every time he looks up at the stars because one of those stars will
be him, riding his Harley. Rather amazing tenderness from such a tough
Speaking of things artistic, John has a natural talent for sculpture.
Many of his stone and marble carvings adorn the grounds of Goulburn Jail.
His works are mostly religious icons, which he donates to various churches.
He's currently doing one for the Royal Prince Alfred hospital. He's been
carving things since he was a kid... no training, just a good eye for proportion.
He started with wood but later graduated to stone and marble. I suppose
the donations are John's way of easing his conscience.
John is the son of an Irish couple who lived in Everleigh St Redfern
when he was a kid. They tossed him out of the family home. For a while
he lived on the streets and scavanged garbage bins to survive until a local
Aboriginal family took him in and raised him. He had learned a few tricks
back in those days about survival and how to make money. He describes himself
as an outlaw, so I asked him if there was a difference between outlaws
and criminals. He replied yes, an outlaw has a certain status as a folk
hero (Ned Kelly, Billy the Kid, Robin Hood) whereas a common criminal is
simply low-life... no class.
I also asked if being a member of a bikie gang was like a 9 to 5 job
or 24/7. He said 24/7. "If I call a member and order him to be at my place
at 5am on any given day, he'd better be there." A member starts out on
probation and it's not until the leader is 100% satisfied with him that
the new recruit is given full membership. And that can take a couple
of years. The rules and codes of behavior are strict, non-negotiable and
are in written form. The Rebels, incidentally, is Australia's largest bikie
gang with over 2000 members.
During the evening, John often used his smart phone to call other bikies
(brothers) for a chat about something. He gave me the number of a former
president (now retired) who has the most incredible memory for various
events throughout the years. "He can even remember all the damn license
plates!" John described me as a "journalist" and suggested I collaborate
with the ex president, Tiny, to write a book about the Rebels Funniest
Moments. He said it would make a fortune. My worry is that what those guys
might find funny I might not. In fact, I might be horrified. Besides, my
tongue is still swollen, I can't speak properly on the phone, and Tiny
lives in Sydney.
An out of character aspect to John's tough bikie image is his little
125cc Vespa motor scooter. He loves the thing, and uses it to zip down
to the corner store to get the milk and paper. It's a lot easier than getting
dressed up in all the leathers to ride the Harley. During one of his phone
convos with a bikie mate, he talked the bloke into buying a used Vespa
so the two of them could go for a ride together.
Next morning, I was wheeled into surgery at about 7am. I was warned
that I might get a tracheostomy if I had trouble breathing during the operation,
but as it turned out, I didn't need one. Ten hours later I was wheeled
into a private room where I woke several hours later at about 10pm. I was
surprsed to find a tube up my nose - my feeding tube - plus a bunch of
other tubes in my arms and neck - tubes for inserting stuff, tubes for
draining stuff. I was a mess. And my tongue was swollen. When I first woke,
I was completely disoriented. I looked at the clock on the wall, then looked
away, then looked back. The clock hadn't moved, but it seemed like it should
have. "That clock isn't moving," I said to the nurse. She explained that
I'd been through serious surgery for 10 hours and was still under the effects
of general anaesthetic. Slowly, I began to come round but I was very weak,
needing assistance in the loo and shower. I learned in a hurry not to trust
the urine bottle. My diet of drip feed was coming out both ends simultaneously.
A nurse was stationed in my room full-time on the first night. After that,
I was visited every hour by various nurses, one of whom turned me on my
side to give my back and butt a wash and discovered "something odd" jammed
up my rectum. She checked with the head nurse and discovered it was a thermometer
left in my butt during the operation. The damn thing was about a foot long
and it felt really weird being withdrawn. "There's no privacy here, Gary.
You leave your dignity outside when you arrive here."
By about day 3 or 4, I was capable of showering and going to the loo
myself. Then a friend (ex neighbor in Glebe) visited and delivered my new
wireless modem. How cool was that? Up until then I was bored as hell with
virtually nothing to do except chat a little with the nurses or stare out
the window at a bunch of trees... and there had been no contact with people
I knew on the net. Meanwhile, I was improving well according to the nurses,
one of whom said I was "ticking boxes". A week and a bit after surgery,
I was taken off the drip feed, had the drainage tubes removed, and the
plaster cast on my right arm removed. Then I was moved from the private
room to a ward with 3 other beds. It must have been pretty close to the
heli-pad because I could hear the chopper quite loudly.
One bloke, Neville, had undergone a similar operation to mine except
his included a tracheostomy. His tongue was much more swollen than mine
and protruded from his lips like a giant slug. At first, I thought it was
a serious birth defect. He was reticent to make any sort of contact, and
never spoke, not even to the nurses. If he needed to make something known,
he'd write notes. After I'd been in the ward about 2 days (10 days overall
in hospital), Neville warmed to me and came over to my bed with a note
to say he'd been there since mid December and was still being drip fed.
The day before I left, he had been there 31 days. Another bloke in the
ward was Robert. He and I chatted quite a bit and discovered something
we had in common, a history in the radio business. He was undergoing radiation
and chemo therapy for cancer of the intestines, for which be blamed exposure
to Agent Orange during the Vietnam war. He was discharged about 2 days
before I left, and had surgery scheduled about 3 months further down the
track. The third bloke, James, was 86 with a serious tumor in his throat
despite having never smoked in his life. He had already undergone a tracheostomy
to aid breathing but had lots of trouble overnight with gagging and gurgling.
He was forever calling a night nurse to his aid, which also kept me awake.
He was scheduled to undergo radiation and chemo therapy for 9 weeks. As
I shook his hand before I left, I wished him luck and he said, "I'll need
Most of the time in the 4-bed ward, I ignored the meals. Stuff like
scrambled eggs, pureed vegetable and meat I simply rejected... and couldn't
eat. I ate only custard and soup and yoghurt, and drank a bit of fruit
juice and health drink. Another problem was a couple of blisters on my
inside lip (probably caused by trying to talk too much) which made eating
and drinking painful. As a consequence, I lost weight as well as strength.
After I was discharged, I was so weak I hardly made it to the railway station
with my heavy backpack. On the train itself, I had a dizzy spell and sank
to the floor of the carriage. But I was soon back on my feet and managed
to return to my seat without assistance. Even now, several days later,
I still find it difficult to stay on my feet for extended periods, and
I barely have the strength to tear off those seals from the tops of plastic
cups of fruit or juice.
I've been home almost a week now and am improving ever so slowly. I
had no idea I would be this badly affected by the operation... no idea
at all. It makes my heart surgery 10 years ago seem like a non event. I
feel drained, and am getting around the house like a bent old man, constantly
resting my butt on the nearest chair. Sheesh.
Next Tuesday I have a final (hopefully) appointment with the surgeon
just to check that the wounds are healing okay. Then about half way through
next month (February) I'll start the 6-week radiation and chemo course
at Port Macquarie... but that'll be another story. Meanwhile, I didn't
take many pics of my recent experience at Royal Prince Alfred... Sunrise
at Taree railway station the morning I departed by bus, changeover to train
at Broadmeadow (near Newcastle), various scenes at the hospital including
of me looking dreadful, a picture on the wall which so happened to be of
Mt Warning (Wollumbin) which is mentioned quite a lot in Green Room II,
my wounded arm (with and without plaster), the Devine Miss Mikela one of
the lovely and attentive nurses who treated me so well, the main entrance
foyer at the hospital as I departed, and a few passing scenes from the
train as I returned home.
Paste from my journal entry 0053:
February 18, 2012. Back home from spending 4 days at the Rotary
Lodge in the grounds of Port Macquarie hospital, North Coast NSW, 3 of
them compliments of the house. Following the major surgery on my mouth/neck
cancer last month in Sydney at Royal Prince Alfred, I've been assigned
follow-up radiotherapy at Port Macquarie. The doc initially scheduled me
for a regular 6-week, 5-day a week session and planted a feeding tube in
my stomach for starters (late January). But more recently he asked if I
was confident of getting through the complete radiotherapy session as planned
and I said I wasn't. I'd heard too many stories and anecdotes from every
Tom, Dick and Harry that frightened the daylights out of me. So he frightened
me a little more by telling me if the cancer returned I'd be a dead man.
Okay... so what was I supposed to do about that? He was asking me to predict
the outcome of the therapy session and I couldn't give him an answer. I
had no idea whether the pain would be too intense for me to handle or not.
It was an unknown quantity, made all the more unknown by the fact that
the radiation would be targeted at my neck, producing intense feelings
of sunburn and sore throat which would make swallowing extremely difficult.
So the doc relented and put me onto an alternative schedule called "quads",
4 radiotherapy sessions over 2 days, then a break of 4 weeks until the
next lot of "quads". After that? I'm not sure. Anyway, my first set of
"quads", plus a bit of this and that from my dietician/nutritionist and
my speech therapist, I'm back home in Taree. So far, I'm not feeling any
side-effects from the radiation but the nurses say it's early days yet.
And my dietician says I can count on six months before I'm fully recovered
from this ordeal. However, I have improved in general well-being, strength,
attitude and appetite (even though I'm still on soft foods) over the last
few days. No sore throat yet.
I didn't do any scenic shots of Port Macquarie while I was there...
too preoccupied with things medical... maybe I will next month. In pic
5 you'll see all my liquid food piled up on the kitchen bench - free from
my dietician. Most of it came home with me in the back of the Ute. Maybe
my dietician likes me or something. At one stage the hospital was visited
by the rescue helicopter which I shot with the little compact Fuji. It
doesn't have an eye viewfinder and I couldn't see the chopper clearly in
the LCD screen (it's size), so I cropped one of the pics for you. That
thing was just 100 yards or so from my window. The shot was taken from
the BBQ deck of the lodge just a few doors down from my room. All rather
jolly, really... except that one bloke invited me to a chicken and beer
BBQ and I had to decline because I couldn't eat solid foods! Dammit.
There's a couple of shots of the radiation machine there, with my tailor-made
mask sitting on it. That was made/molded last month, and is designed to
fit my head perfectly, and bolt to the frame of the bed, so that the radiation
targets exactly the same areas each time I undergo the therapy. It's made
of open-weave plastic.
Paste of my journal entry 0054:
March 14-16, 2012. Spent the past 3 days in Port Macquarie for
my second quad of radiation therapy at the hospital, staying at Rotary
Lodge in the hospital grounds. I'm back home now in Taree writing this
on Saturday 17th.
The therapy went well, two zaps on Thursday and another two on Friday
without any dramas. On Wednesday, a young doc there gave me a "medical
review" to see if everything was fine and if I was healthy enough to undergo
my second quad. It was the shortest medical I've ever had... in and out
like a revolving door.
Actually, I'm feeling much healthier and stronger than last month...
and this month I'll be focusing on eating more food orally instead of through
the stomach tube. I did quite a bit of walking on my photographic excursion
around Port Macquarie's beaches this morning and wasn't puffed at all.
In fact, I climbed a bunch of stairs leading to one of the beaches without
any problem. They would have impossible in Jan/Feb. So the kid's doin'
Yesterday, during my final zap, I asked one of the operators to take
a few pics with my little Fuji. The pics are a bit blurred (can't trust
other dudes) but they'll give you and idea of what the radiation process
involves and what my mask looks like.
Paste of my journal entry 0055:
April 15, 2012. After my final blast of radiation therapy for
mouth/neck cancer at Port Macquarie hospital, I checked out of the Rotary
Lodge on Saturday morning and drove south. I turned east off the Pacific
Highway about half way back to Taree and headed to Crowdy Bay National
Park just to take a look around and grab a few pics.
By the way, the cancer treatment seems to be coming along just fine.
I'm due back at Port Macquarie in six weeks for an assessment. Hopefully,
before that I'll have the stomach tube removed. I'm desperate to get back
to eating NORMAL food! I've included two pics at the end of the Crowdy
album of the special mask that I had to wear during the radiation therapy.
Talk about claustrophobic! But that's all over now, and I get to keep the
mask as a memento.
Back to August 2012. I stopped mentioning the cancer treatment
in journal entries after April, probably because there wasn't much to report.
In July, I visited Sydney again to see Dr Clark. He said the surgery is
looking good and the healing is excellent. But my main mission (as far
as I was concerned) was to use the 6 or so hours between arriving at Central
and my appointment with the doc to shoot a video of Sydney. It took about
3 days of editing to put the thing together but it turned out quite well.
I also had another visit to Port Macquarie where I was diagnosed with
lymphodema. The operation back in January removed about 85 lymph glands
which means fluid now builds up in my neck and face. But a nurse at the
hospital showed me a massage technique that relieves the swelling. I do
the massage routine once a day and have for the past month or so. The result
has been great. There's only moderate swelling in the mornings (caused
by being horizontal in bed) but it soon disappears after sitting or standing
About mid July, I drove to Newcastle hospital for a PET scan, which
scans the whole body for even the minutest traces of cancer. The result
was all clear. On August 1, I drove to Port Macquarie to have the stomach
tube removed at last. While there, the doc discussed the results of the
PET scan and was very pleased with my progress. Here's a past of the Waffle
I wrote that day:
August 1, 2012. It's after 3pm at the Lodge and I'm tubeless.
The buggers tried to frighten the daylights outta me earlier, telling me
all kinds of terrible stories about removing PIG tubes and what could go
wrong. It was the young doc's first experience with this particular procedure
so the senior doc was giving him instructions, such as wearing a plastic
coat to protect him from my spray while the senior doc and the nurse stood
20 paces away. Hehe. Then they told me I'd let out a scream when the thing
was yanked from my stomach but that I'd be okay shortly thereafter. Earlier,
when the nurse put a catheter in my arm, she said ''this is my first one...
do you bleed much?" Yeah, right, it was the first one for the DAY. So then
they fed some stuff through the catheter that would make me whoopee. Pretty
soon I was nodding off and even snoring. Next thing I knew, they were standing
around the bed and asking me how I was feeling. "It's out," the doc said.
I didn't believe him, so I looked down at my stomach. There was a little
bandage there with a spot of blood. I hadn't felt a thing! Talk about an
anti climax. Then I was offered a sandwich, a creme caramel, a banana flavored
custard and a cup of tea, all of which I demolished with ease. After another
check an hour or so later, they allowed me to leave. But the doc wants
another look before I drive back to Taree in the morning at about 8am,
then they want me to check with my local GP next week. And that's it!
There was a woman in the waiting room who was obviously pretty new to
the whole procedure. She also had a food tube but hers was up her nose,
so she couldn't even have a cuppa. I had one of those for 2 weeks back
in Sydney after the op. What a pain that was! Worse still, was having it
removed. The tube went all the way up the nostril and down into the throat
and there was no anaesthetic when the nurse finally pulled it out. Yow!
I realized how 'yow' when I watched another patient in the same ward have
his removed hehe. His face was contorted like you wouldn't believe. Yes,
dear Breth, it's been a pretty interesting experience.
It's been a nice day weatherwise. This room is quite warm because the
sun has been shining on the front windows all day but it's getting late
so it'll turn cold pretty soon. There's a little blower heater in the closet
so no worries. The forecast is for similar weather tomorrow. Meanwhile,
I'll get to try my Italian chicken and asparagus soup with herbs.
And a later post on Waffle:
August 2, 2012. Well, as it turns out, that's not quite it...
the doc at Port Macquarie wants to see me again in 6 months. It was gonna
be 3 but the head/neck doc in Sydney wants to see me in 3. However, all
seems well, and it's a relief to be tubeless. I now have two belly buttons,
as the doc said this morning.
That Italian chicken/asparagus soup with herbs last night was deeeeelish!
Definitely on the shopping list again. A lot of the soup manufacturers
these days use little cubes of chicken/beef that aren't real... they're
artificial, grown in a test tube or something. But the soup I had last
night used REAL shredded chicken. The asparagus was good too... al dente.
I have to say that the staff at PM hospital are terrific. They make
you feel like you're visiting friends at home rather than a hospital. Even
the manager of the Rotary Lodge paused to say her goodbyes this morning.
One of the nurses there is a funny chick. Every time I tried to bitch about
something she'd say, "Oh, shut up." Hehe. She's the one who tried to make
me believe yesterday's catheter was her first attempt.
And back to the present: So that's about it. Seems I've managed
to "dodge the bullet" as one American friend said. My battle with the Big
C, at least for the time being, is over. But I understand that I'll need
regular checkups, probably twice a year, before I can say with certainty
that I'm totally clean. That will mean returning to Sydney and/or Port
Macquarie at various intervals on the Odyssey, but that's okay.
So, is the Big C as scary as they say it is? Yeah, I guess it is. But
I didn't let it get me down, at least not to the point of caving in to
negativity. I focused on the things I want to do, the things that are important
to me, like the Odyssey. Or as Oregon Richie says, keep your eyes on the
prize. Humor is important too. Ya gotta have a sense of humor.
Oops! It ain't over yet!
January 2, 2014. Yesterday, an old radio colleague phoned to
catch up with the latest. He was unaware of my bout with cancer so I brought
him up to speed and told him about this page on my web site. It was then
that I realized I hadn't included my dental issues. In August/September
2012, the oncologist at Port Macquarie advised me to see "my" dentist about
having all my teeth extracted. My dentist? I didn't have one, and hadn't
for decades. So I visited a local clinic in Taree just up the road from
where I live. I explained the situation and was seen by one of the dentists
who suggested that my teeth were worth saving. I passed that information
onto both my oncologist and the cancer specialist in Sydney who both said,
"that's her call." So I figured saving my teeth was cool. Wrong!
After a month or two getting treatment at the clinic, the senior dentist,
who also worked as a lecturer at a Sydney university, visited the clinic
and took a look at my mouth. He understood the need for having all teeth
pulled after radiation treatment on the neck and jaw area because the treatment
eventually destroys the teeth root systems. They were destined to rot and
fall out anyway, and nothing could save them. Alarm bells rang and the
dentist pulled all teeth on one side. Then, three weeks later he pulled
the remaining teeth on the other side, about 24 teeth in all, and all under
local anesthetic. I felt like I'd been pummeled in the ring for several
hours by a professional heavyweight boxer.
But there was another more serious problem. The gums had already begun
to recede, leaving exposed bone on the lower jaw. It was a very dangerous
situation because of the risk of infection. In fact, infection had already
set in and had to be treated urgently. The specialist in Sydney gave me
two options: (1) hyperbaric chamber treatment over several weeks (similar
to the treatment a diver receives after surfacing too quickly) to oxygenate
the blood supply to the exposed bone and gum, followed by an operation
to remove excess bone, or (2) medication to encourage vascularization of
the gum/bone which included a daily mega dose of vitamin E. The drug and
vitamin treatment was fairly new which meant I was a "guinea pig". However,
it was a lot less complicated and far cheaper than the hyperbaric chamber.
So here I am over 12 months later, having undergone bi-weekly treatment
at the dental clinic to irrigate the lower jaw and keep it clean and hopefully
free of infection, still toothless. I supplement the irrigation by using
special mouthwash 3 times daily. My diet has consisted of soup, mince (put
through the blender), and dairy foods such as smoothies, custard, ice cream,
etc. My inability to eat properly has caused my weight to plummet. I'm
barely able to tilt the scales over 50kgs.
However, the gums have improved as has the exposed bone but ever so
slowly... fractions of millimeters at a time. Still and all, some progress
is better than none. The dentist is hopeful that 2014 will see the healing
complete. In fact, they've suggest fitting an upper plate and "gumming
it" (chewing) on areas of the lower gum that are not so sensitive. Chewing
increases the flow of saliva which will aid digestion and swallowing, and
if it works, I'll be able to improve my diet to include things like scrambled
egg, soft fruits and vegetables, meat balls and perhaps even sandwiches.
This, in turn, will help my weight improve together with my general fitness,
and that should translate into increased improvement of the gum. Before
too many months have passed. and with a bit of luck, I may be fitted with
a lower denture as well.
I suppose it all sounds pretty dramatic but I feel okay and my spirits
and attitude are okay too. No point in bitching about my situation. That
doesn't do anyone any good. Oh yes, and guess who's the star of the show
at the dental clinic?