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- Guest Column
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- Tuesday, 17 November 2009
by PETER CROSS
They say the third time is the charm, well if it is true then I am really charmed. This is my third cancer diagnosis — first my tongue, then a kidney and now the good old prostate.
I know I am not the only person out there who through this. Many friends past and present are fighting their own battles every day and I draw strength from their courage and humour.
I am not asking for or expecting sympathy. I am doing this entirely for me. Those of you who know me personally will vouch for what a stubborn, ungracious coot I am and I do not take kindly to offers of help or any form of mollycoddling.
I was going to do this last time I had a bad diagnosis but never got around to putting finger to keypad. This time I am hoping to keep a kind of online diary about the next few months and my treatment. Not because I am some Farrah Fawcett-Majors or Joan Didion wannabe but it helps clear my mind and it may help someone who is reading it (that’s my ego assuming others are reading the drivel ‘what I rite’).
So first the background. In 2003 I was diagnosed with throat cancer. It was a little irritation right at the back of my throat that first gave my GP and me a hint that something was wrong. Orange juice would really sting and I found I was constantly trying to clear my throat. I took the news pretty well — what can you do? There is no point sitting in a puddle of self-indulgent wailing. It becomes one of those things you just need to get on with and fix as soon as you can. I tend to be rather pragmatic about such stuff.
So I had the meetings with the surgeons — the ENT man who would cut my throat open from ear to ear and excise the lesion then take a flap of skin from my wrist and sew that into my tongue; then the plastic surgeon who would try and sew the tongue back together and reconnect the nerves, etc; finally meeting with the radiotherapist who would, over the course of four weeks, zap what was left of the cancerous cells out of my body. All pretty standard. I was ready, well, as ready as you can be.
At the final surgical consult — where a group of surgeons of related disciplines sit around and discuss if this is indeed the best option — I was thrown a curve ball.
The radiotherapist said I would have to have all my molar teeth removed in case the radiation made them crumble and break. This threw me, I mean what the…? It was one of those things you least expect to happen. It had played no part in my plan for what was coming. Doubly annoying, I had just spent the year before having all my old fillings taken out and replaced with sparkling new white composites. I was pissed at this — I took an instant dislike to the radiotherapist, something I still haven’t let go of.
Removing 12 molars all at once is not the most pleasant of experiences. It’s day surgery and when you come out you’re feeling none too bright. But what can you do? You can’t argue because you are already feeling overwhelmed, so in the end you suck it up and have the buggers ripped out.
With teeth removed and my gums starting to heal, I checked into St Vincent’s Private. I had been a card-carrying member of my private health fund for years, so I was expecting the best. The nurses couldn’t have been nicer. I had a lovely room looking over Victoria St straight into the hospice — that made me slightly nervous.
The next morning I was taken into theatre and a very nice lady anaesthetist put a very sharp needle in my arm and I drifted blissfully off to sleep. They told me later I was on the ‘table’ for just over fourteen hours — that was the best fourteen hours I would spend for the next few months.
I woke up, briefly, in the ICU — more drugs and some very strange dreams. I spent a few days there then they pushed me back up to my room and for the first time I saw my reflection. A tube stuck out of my incredibly swollen throat, another one up my nose, 40-odd staples across my neck to hold my Adam’s apple and other unnamed organs in, various drains to catch the seepage from the several wounds situated all around my by now wasting body.
Oh yes, let’s briefly talk about muscle mass, muscle ‘dun last too long’ once you stop going to the gym. I had gone from a decent 78 kilos down to about 60 kilos in what seemed like minutes. To say I was frail was putting it kindly. I made Posh Spice look like Mamma Cass. This is not an exaggeration.
After about two weeks I was able to go home and finish my recuperation in my own bed. Never have I been happier to crawl between my very own flannelette sheets than that first night after release.
Eating was going to be a problem, since essentially I had no teeth to chew with and my throat, although healing, was still pretty raw. I had to get used to using my now repaired and replaced ‘new’ tongue which seemed to have a mind of its own. Soft food, milk arrowroot biscuits and lukewarm cups of tea became my diet, plus mashed fruit cup of pears and/or apples.
I was given a two-week window before being sent back to the nasty tooth fairy for radio.
Rest and recuperation and for some reason I developed a kinky fascination with the Food Channel on Fox, taunting myself with delicious looking dishes I couldn’t even begin to consider eating.
With strength returning thanks mainly to the many packets of milk arrowroot biscuits and mugs of tea consumed while watching Jamie Oliver carve a leg of Tuscan lamb I started the weeks of radiotherapy that would finally eradicate the cancerous cells lurking inside my unsuspecting throat.
Every day at 9.15 I would make my way to the radiotherapy centre in St Vincent’s Clinic and there, surrounded by others all undergoing treatment for one form or another of cancer, I would change into my hospital gown with the gaping back and sit quietly reading the latest issue of New Idea waiting for my turn to be ‘zapped’. Patients in varying stages of treatment — the luckier ones near the end of their regime, although exhausted by the physical toll the therapy takes on you, had a certain air of triumph knowing they had got this far and the end was in sight.
For 15 minutes I would lie on the thin and extremely hard metal bed while my neck was pounded by hidden rays.
After the first few sessions I managed to sleep through the treatments. It was here for the first time that I had to ask for help. Unable to get up from the bed and by now weighing in at a hefty 45 kilos, in my croaking voice with a tongue refusing to do what normal tongues do I had to be lifted from the bench and propped back up on shaky chicken legs.
Then dressed and determined I would make my way home to the Food Channel and more soggy biscuits.
It’s funny the things that run through your mind as you shuffle up the street in the middle of winter. I remember one strong thought, “Please don’t let anyone think I am an AIDS victim”. Emaciated and angry, I still had my vanity, misplaced as it was.
The thing with radiation is that at first it seems very easy. There are no visible effects but after three weeks and taking no notice of the nurses who had said, “Make sure you rub a good moisturising cream into the radiation burns to limit the damage to your skin,” I found that indeed the skin around my neck began, quite literally to melt. So out with the moisturiser which I applied liberally to the area, a bit like basting a side of lamb, or my case, of mutton.
The upside of radiation — yes, there is one — is that I no longer have to shave most of my face or neck, that radiation kills everything, indiscriminately. The downside is that most of my saliva glands were blasted as well, leaving me, permanently, with that cloying dry mouth. You know the feeling where your tongue sticks to the roof of your mouth as if you have been out too late having a night on the tiles.
By the time treatment ended and follow-up visits to the surgeons had been made, almost three months had passed. I was not aware of the movement of time, my world became one of one foot in front of the other. Each moment was the only thing that counted. I made no plans, I saw no friends — ego again — and I began to build up the fortress walls I thought were needed to keep me safe.
About this time, in New York, a friend was producing the first Australian show to open on Broadway and I decided I needed a treat, a little reward — actually I think I just wanted to escape. My housemate was going over for opening night and the day before he was due to fly out I decided why the f**k not. So I made him drive me into town and I bought a return ticket to NYC. Such is my madness. For the next 14 days I indulged in shows, shopping and dinners at Sardi’s, all thanks to the wonderful people at Visa.
Getting back to Sydney and feeling strong enough to go back to work, I rang my employer and asked when they wanted me back. His response was less than satisfactory. He was of the opinion I should be made redundant and take a minimal payout.
For the next few months, lawyers’ letters were exchanged. In the end I kept the job but my boss rarely spoke to me again. I became, for want of a better description, ‘the fart that lingers in the room that no one will claim’.
People ask me often, “Do you now think of each day as a gift?” Honestly no, each day is just each day; good things happen and bad things happen but I didn’t have a ‘road to Damascus’ epiphany and suddenly become this being of love and light. I’m still the selfish, self-centred, grumpy ‘old coot’ I was before the Big C.
Skip forward three years to 2006 — another crisis.
Three years after my throat had been worked on a little of the anger and resentment that had been building up in me had started to dissipate. I was back at the gym, I had gained weight (back to 69 kilos) and I had two sparkling new partial dentures (uppers and lowers), thanks to a very kind cash gift from a very close friend who shall remain nameless.
The anger that had been bubbling under the surface of my recovery finally started to move thanks to my trainer, Michael Ossher. When I was finally ready to go back to the gym and begin weight training again he was coincidentally in his last year of training as a psychotherapist and he proved to be the perfect sounding board.
I’m not an overly emotional person in my day-to-day life, however, I had begun to resent my friends for what I perceived as their good fortune, health and wealth and my lack thereof.
Michael never said anything, overtly, but he encouraged me to train while he patiently listened to my ranting and never judged me and he let me find my own path out of the mire of self-pity I had sunk into. I owe him a huge debt of thanks for that.
However, about June or July of 2006, I began to feel stiffness in my neck that I immediately put down to muscle strain. I found it harder and harder each day to turn my head in any direction. The only time it felt even mildly better was after a hot — and I mean scalding — shower.
My housemate, who tends to worry about me, watched with growing concern as I once again began to rapidly lose weight. I would sit on the couch swallowing numerous Panadol to try and make the pain go away. I would break out in drenching sweat, I couldn’t raise my head, I stopped eating and retreated to my bed, never leaving it unless I had to go to the loo.
During this time I was participating in a trial of a new treatment that would help restore fat to my face. Fat that had been lost during the great cancer of 2003.
Sculptra, normally $1000 per session, was being given freely to people who had suffered massive facial fat loss.
In a strange coincidence, the doctor running the trial was the plastic surgeon who had put my tongue back together. The reason I mention this is primarily after passing out in his surgery and having no idea where I was I decided perhaps it may be time to visit my GP and deal with what was happening.
Denial is a long river and I swim it confidently.
A day later I lay in isolation, on a bed in the infectious diseases ward of St Vincent’s Hospital, watching with panic as everyone who came into my room was forced to wear a mask, trying to take in that I was being treated as if I had every possible communicable disease known to man. I couldn’t breathe, I couldn’t swallow. Everything I tried to eat ended up in my lungs causing secondary infections. I literally became one of Kevin07’s ‘aspirational’ voters.
Finally after a week of being force-fed a variety of tablets the size of fifty-cent coins and, you guessed it, more massive weight loss, my lungs collapsed. The last thing I really remember is grabbing the empty ‘pee’ bottle and projectile vomiting into it.
I woke up, if that’s the right word, in ICU in a large room surrounded by windows with oxygen tubes stuffed up my nose and a nurse sitting outside monitoring me. I was her only patient and it didn’t make me feel special. I felt like a Monty Python sketch with all the machines going ‘ping’.
Breathing was incredibly hard — oxygen was being forced down into my lungs. I couldn’t finish simple sentences. I had to wear a full-face oxygen mask, one of the most claustrophobic experiences of my life, especially as the first mask was faulty and every 40 seconds or so refused to pump air.
I can’t describe the feeling of panic I had when, for probably less than a minute, the nurse would disappear from my sight line.
Eventually they let me out of the Isolation Room and into the general ICU population, still unable to stand or really move. I sat in a large recliner rocker while a 20-something intern inserted a catheter into my frightened and shrinking willy. (I know this is a lot of unasked-for information.) Once more my lungs collapsed — I don’t think it was cause and effect.
My ex-boyfriend Thomas flew up from Victoria to be with me, as the end seemed more than possible. Richard, my housemate, was the mess that only he can be. The doctors asked me if I ‘crashed’ again, did I want them to pull me back or… It was an easy decision and without a second’s hesitation I said, “No, let me go”. I signed all the appropriate papers and made what peace I could with myself, the world and God.
There were tears, none from me, and suddenly we were all resigned that this was it.
I must like a challenge because two days later I was on the road to recovery and the antibiotics they had been pumping into me to fix the infection that had caused the cysts on my spine started to work.
I was returned triumphant to the ward, no longer isolated, but here’s the thing, as they say in American TV shows — one of the multitude of scans that I had been through had discovered a lump on my right kidney and of course it was cancerous and of course it needed to be removed and of course they couldn’t do that until this 42 kilo piece of humanity had regained some strength and weight.
Discharged and sent home to regroup and rebuild, I was told that in two weeks time I would be back and they would whip out the offending organ. So I did and they did and once again there was some good news — the cancer was not related in anyway to the cancer of 2003.
I had spent just under two months in hospital, three weeks in ICU. I had forgotten what it was like to sleep in a bed larger than a stretcher.
Who would have thought two tumours in three years?
Thomas went back to Melbourne. He had stayed with me for almost a month. Who says that ex-boyfriends can’t be your closest friends?
Richard from that day on has always looked nervously at me whenever I sneeze or complain of a pain in my neck. Naturally, being the caring and considerate person I am, I will often clutch my side and feign agony or to really scare him, I’ll lie on the floor in the kitchen pretending to have lapsed into a coma just as he comes home from work. To quote Alan Bennett, “Oh how we laughed.”
That brings you up to date on most of my health issues until 2009.
Are you all still with me?
Let’s flash forward a few years, three in fact, to 2009. Everything seems to be moving along nicely. All my check-ups post-cancer operations are good.
It’s been over five years since they took out the tumour on my tongue and the follow-ups for the kidney operation are encouraging, so life is pretty okay.
In 2005 after finally being made redundant by my boss, (with a decent payout this time), I needed something to do so I started to write. My thought pattern went something along the lines of: Since I find it hard to speak now, I don’t want to work in hospitality and I still seem to be opinionated and there is no point just sitting in cafés drinking coffee and reading The Daily Telegraph every day. I should do something. I know — I’ll write a TV series.
So I did. Over about five months I wrote six episodes of a series aimed primarily at SBS or the ABC, set in the wonderful world of politics (something I new little about) called A House Divided. I found it easy to write and I seemed to be pretty good at it.
Of course no one bought it but the exercise was good for me. I started to write a few opinion pieces for Sydney Star Observer, I contributed to an e-book called I Am A Camera. People were positive about my scribbling. I joined the Australian Writers’ Guild, made contact with a group of film and television writers and became reasonably productive. I finished one screenplay and started a second.
Everything seemed to be moving nicely forward.
Near the beginning of 2009, maybe a little earlier, I started to have some bowel trouble.
I apologise now because it will be a little graphic for a paragraph or so.
I had what I liked to call ‘incidents’. I found it difficult to walk from my house in Darlinghurst to Surry Hills without having to go, very quickly, to the loo. More than once, I didn’t make it in time. Are you getting the picture? Stuck on Oxford St and unintentionally messy.
You think I would have learned by now that if something is going wrong with my system, see a doctor, but no, not me. I made allowances and planned my outings carefully, always making sure wherever I was going had 1. parking and 2. a toilet. I changed cafés because Lumiere didn’t have an on-site toilet. Soon I was set in my new routine and the ‘incidents’ never quite disappeared but they certainly diminished.
I had had a colonoscopy in 2008 and although the results were clear my prostate was larger than normal. We — the doctors and I — attributed this to my lack of weight. In probably March 2009 I started to experience some real pain in ‘me nether regions’. We thought this was probably irritable bowel syndrome. With the help of Nurofen and limiting the amount of walking I did, I established a routine.
Every year, for the last three years, I have been earning some extra cash as an exam supervisor at one of the girls’ schools in the eastern suburbs. This year I had problems. As most of the supervision requires endless walking up and down rows of desks I found I needed to sit more often than stand — the pain was building.
I’m usually pretty good with pain but this was one of those dull aches that seem to throb incessantly. I decided to stop delaying and see my old friend the doctor.
Wednesday August 12, 2009
I really dislike digital rectal examinations. There, I said and I mean it. They’re invasive (obviously) and you don’t get dinner before or after. My doctor is a hummer. As he worked away with swab and finger, he hummed. I’m not sure if it was to distract me or him. His beautiful dog Rosie wisely slept through the entire event.
Within 20 minutes of the ‘fingering’ I was back up to St Vincent’s Clinic, waiting to see a new doctor, one who specialised in ‘that area’, the bum, the anus, my butt. Again with the finger but this time no humming, just a sort of grunt which may have come from him but could also have been mine. He booked me in for a colonoscopy the next day with the sole purpose of taking a biopsy.
So the news was, yes ,there was a problem, he wouldn’t be able to be more specific until he had done the biopsy. In all probability, I would need radiotherapy and a course of chemo. The worst case scenario was ‘a bag’.
Thursday August 13, 2009
The day was spent at home never far from the loo. It was a day of fasting and drinking — the cleansing of the bowel ‘preparation’.
Again, too much information but I had to do three loads of washing that day, you can guess why.
Friday August 14, 2009
I gingerly made my way, early, up to the sixth floor of St Vincent’s Clinic for my 12.30 appointment. Finally I was invited in, told to change into the gown with the ‘gaping back’ and popped onto a bed. I closed my eyes and tried to sleep but every now and then from behind the curtain to my left, someone who had just ‘been done’ would let out a rather loud and worrying fart. No one said a word. I suppose it is a normal sound for the recovery room of the colonoscopy centre at St Vincent’s.
I was wheeled into the room, rolled on to my side while the very nice young anaesthetist put the needle into my wrist. We seemed to be chatting away rather well. I said in my best jaunty voice, “Can I get the good drugs, the ones Michael Jackson took?” I woke up in the recovery room, with no memory of anything that had followed the injection.
I can see why Michael Jackson became so enamoured of whatever drug they are pumping into you before you have a procedure.
After an orange juice, a cup of tea and one or two noisy farts, I was allowed to dress and join the other post-probees.
Another cup of tea, some comforting words from the doctor and I was told to report back on Thursday August 20 for the results.
Thursday August 20, 2009:
I made it to my appointment and had confirmed by my new doctor his previous diagnosis, ‘a tumour in the rectum’, his words not mine. Very treatable, he thought, with a combination of radiotherapy and chemo. He gave me the number of a radiotherapist at Prince of Wales Hospital and I promised to make contact with her and work out treatment dates, etc.
A third tumour, who would have thought?
My intention now is to write each week, much more briefly about what is going on and how the regime is progressing. As I said at the start of this, I am going to be doing this for me as a way of cleansing and clearing my mind. If it helps or assists anyone else that would be great.
I will try to do it with as much humour and honesty as I can. I am sure there will be times when it will be a rant, times when I rail at the unfairness of life in general, but hopefully this ‘diary’ will dissipate most of the anger.
For those of you who read this far, thanks.
Talk to you all soon.
November 22nd, 2009 @ 8:10 pm
Beautifully written. You’re positivity is breath-taking although it’s easier to be flippant in hindsight. I came across your article totally by accident but I am interested in your on-going story, not from a ghoulish perspective but because I admire your tenacity and I like your style of narrative. What staggering bad luck you’ve had and if all bad things come in threes (along with the number 12 bus), then I sincerely hope this is it and you go on to live a long and creative life.
December 2nd, 2009 @ 11:14 am
Great narrative. Your humour seems to get you through tough times and good luck with your treatment! Please continue to write as it does help others very much. Good Luck to you.