My Battle with Cancer

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 it.

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 dude.

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 it."

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' okay.

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 upright.

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?

Return to Home Page