I'm not dead

This small and quite splendid lime colored frog was found in the bathroom in Weipa. Weipa is a small mining town in northern Queensland where I was teaching indigenous young people for a fortnight of hip hop and creative art workshops with three other artists in 2006.

The title of this blog is in reference to the enormous undertaking it has been and therefore will continue to be in regards to informing and distilling myths in regards to my present state of health. Disclosing the information in regards to my cancer and supporting people through this shock is nearly a full time job (thank you Centrelink for supporting my new found line of work as a grief and loss counsellor for the Brunswick punks, hippies and regular bohemians). The news of the recent diagnosis is met with such a variety of responses from disbelief, shock, instant emotional overload or an appearance of apathetic indifference. All of which are a natural response to an unforeseen event in the life of a close friend, lover or family member with cancer. But negotiating these responses is highly exhausting to say the least and has led me to the conclusion that fighting the cancer is such a small amount of the journey. Disclosing, discussing and advocating on behalf of the cancer takes up a hell of a lot more mental and emotional space.

Then there is the self analysis that goes on in respect to the kind of cancer patient that I want to be. Aspirationally speaking as well as in a day to day existence, am I the true fighter, the suffering silent victim, the vessel of the disease, the complete optimist, the fatalist or something in between. Do I all of a sudden have an epiphany and start to care for the sick, maimed and injured within our community with a ferocity of one who has truly known what it is to suffer. Do I act non chalant and blazing go out to debaucherous night dens flicking my nearly acquired faux blonde wig and displaying a complete indifference to my internal battle (well battle waged within the confines of my lymphatic system). Do I Become an advocate for cancer and decide to hold the largest morning tea possible with a grand stand and a marching band, littered with survivors stories telecast over the big screens.

Or do I allow some of the enormity to slowly eat at my core and seep into my creative and abused veins. Begin to write dark and tortured poetry and spend hours in the bath tube with the cure blaring and feeling oh so fucken justified.

Do I resign myself to a six month movie marathon, chomping on as much popular culture as I can digest without allowing my up chuck reflex to speak.

oh the cancer patient persona, such a tricky thing to construct.

One thing is for sure, if you haven't discovered it for yourself the torrents of personal affirmations and gossip from friends build your cancer persona for you.

then you can just ride the wave.....

'

Pot Hole

So the weekend before chemo I decided was the last change I had to dabble in some debauchery. So the Saturday night was spent drinking with my friend and then proceeding to a punk gig at the art house.

The next day I woke at seven thirty to get ready to go to the Mornington peninsula in pete's van. Half an hour into the trip we decided that the morning needed the assistance of some hash cake to fully allow the beach and its accompanying serenity to be fully appreciated. Taking a sizable amount of hash cake I began to uncoil and then after an hour to rapidly recoil. I felt the intensity of being stoned continue to expand exponentially and I began to gain continual insights to thought patterns of dark and mysterious origins. A bewildering sense of being confused, paranoid and completely unable to centre myself or my mind. I was entering a pot hole......

I was dredging my soul of the last month of muck. Orbiting around my circus mind was images and sensations of the medical interventions and emotional roller coster I had been on, or should I say was on. The pot like an authoritative old biddy was barking in an accusatory tone of the harsh new found reality of being a cancer patient and with it all the poisonous symptoms and troubles I may face. The lonely road of 'suffering' of being inflicted with a malignancy that was going to take tonnes of poison to slowly evict itself from my body. The voice was cyclic, it continued to snatch away any normal thought trajectories I may have begun to initiate and taint and tarnish it with these troubling images of the unknown.

I sat on the beach as my friends surfed and giggled at my lack of mental clarity and or articulation. They fed me kiwi fruit and coffee in attempt to invoke some kind of alertness of even vague presence.

I eventually projectile vomited into the sand.

I stared at the vomit being absorbed and drunk up by the sand and wished that my entire being could be held so completely. My mind and body continued to be thrashed and dunked by the pot hole until slowly its grip began to loosen, dappled sunlight of reality was piercing my clouded state.

Thank god for reality, we spent so much time trying to escape it. But in times when it is missing in action it can be the only thing you cling for.

The sunset was ushered in with a few beers and fish and chips on the deck.

Slowly the pot hole began to fade

Round one

24.4.08.

Chemo began on Tuesday the 22nd of April.

It has been less then a month since my MRI revealed lumps in my chest. Within three weeks I have morphed from being perfectly healthy to an exhausted and lethargic mess. Tuesday wasn't nearly as fueled by anxiety or trepidation as I had initially expected. Stewart (my sister's partner) and myself had rocked up to the oncology unit to plug in.

The chemo ward is not what I predicted. I had visions of state of the art machines dispensing liquids of obnoxious primary colors. Doctors in nappy san white coats armed with needles and manicured sets of tubes and pill boxes. The atmosphere is very laid back, with a quaint and almost provincial town charm. Relics and modern day chemo paraphernalia lye scattered around the room as nurses weave and tend to array of cancer patients undergoing treatment. The room is bathed in a glow of both hope and fear. The lounge chair that I found myself in was to be the chair that I ultimately took my first taste of what would be injected into my veins for the next six months. The initiation of the chemo was very un ceremonious as I hadn't realised it had begun (I still thought I was on a saline drip). I watched the first bag of red liquid slowly navigate its way through the maze of tubes into the left crease of my forearm. How the fuck had I traveled this road so quickly. The bags were systematically placed into my IV and began there way into my system . The last bag which takes the longest seemed to cause the most side effects. I began to feel slightly exhausted and a thin veil of cloudiness and unease came over me.

Around the room is a display of the great diversification that is a cancer patient. An elderly man with his son reading the herald sun sports section in the corner. A young male patient and his girlfriend sitting across the way, his Chemo being inserted into his catheter in his chest. Three placid looking middle aged women sitting alone in the other room knitting and playing scrabble.

The bag slowly dripped to a close and my time was up for the fortnight. I removed myself from the factory farm armed with three anti-nausea medications and two pamphlets on support groups I could but probably would never join due to my still disbelief that I was one of them. That I actually was a cancer patient. That just like everybody else in the room I was as justified and somewhat entitled to the support offered.

After chemo I felt exhausted and slightly irritable but generally calm and relieved that I had completed the first chapter of my chemo journey. When I got home I had a nap and was awoken with sharp pains in my lungs and stomach region, my clouded head had returned and I felt a great sense of alarm. Perhaps I would stay in a clouded tunnel for six months nurturing stomach aches and chest pains. The pot hole that I had scrambled from a few days ago felt so very present and had a somewhat permanent presence.

The sensations I am gathering even after only two days are very transient. I am in a constant state of changing physical and mental ailments and challenges. Yet the pain is not memorable nor is the nausea that troubling.

the good cancer

April 10Th 2008. the day the good cancer appeared. Unexpected, unwelcome but with a vibrancy and tenacity to expand its residency throughout my body. The good cancer is entitled Hodgkin's Lymphoma. I euphemistically entitle it the 'good cancer' (even though to me good cancer is an oxymoron) because every specialist since the announcement of its arrival has proclaimed it in no uncertain terms to be the cancer of choice. The cancer that only affects 1 in 25,000 people in Australia and is one of the most treatable and curable forms of cancer. So I will give you a short history of how the 'pea' as my cancerous lymph node is labeled showed up or should I say stuck out.

It was a couple of weeks ago when I had been going for a regular MRI scan of my head, neck and spine. The reason I was getting regular MRI scans will have to be explained in a later blog as it is its own elaborate and very elusive discussion spring board. It was 8am on a Friday morning when a neurological registrar from St Vincents hospital rang me to explain that although my brain scan was clear the radiologist had found enlarged cysts in my chest region. I casually explained to the doctor that lumps were a common occurrence in my family and therefore there was no need to worry or more importantly to do further investigation. She explained that actually there was a chance the 'lumps' could be malignant and it was therefore important to undergo a plethora of tests, invasive procedures and prodding and to see a Haematologist to discuss my progress....

Blood tests and bone marrow biopsies complete I went to visit the Haematologist in the hospital's 'cancer clinic'. It was the first time the word Cancer and myself had been in close proximity and instantly I knew we were not friends. In the waiting room was an assortment of people suffering from or waiting for diagnosis in relation to cancer. So the stereotypical bald heads and ill looking members were present yet so were a plethora of healthy looking individuals casually perusing gossip magazines and watching Kerry Ann on TV. One gentlemen in his 70's (who I entitled the electric toothbrush) didn't have a voice box anymore and was talking with an amplifying device put against the hole in his throat. This was the soundtrack of the moments before going in to discuss my next stage of diagnosis and possible cancer, Kerry Ann discussing the benefits of juicing cabbage for younger looking skin and the electric toothbrush chatting to his wife imitating a monotonous and syncopated robot.

the doctor was upbeat and stated that he believed quite strongly that I didn't have lymphoma due to my lack of symptoms and that my lymph nodes were not pronounced besides a small pea on my neck just above my collar bone. With this said, and especially by someone from the medical profession and therefore the oracle of "empirical knowledge" I gained alot more confidence. Confidence that I would be diagnosed with some bizarre immune disorder or perhaps an allergy to the ink from my nearly acquired tattoo that was sketched into my back with traditional bamboo and needle contraption on the beach of Thailand (thankyou google doctor for alerting me to the connection between tattoo ink and lymphatic disorders).

The pea was removed the next Monday and by Wednesday the doctor rang and stated that I should come in tomorrow (a week earlier than I was supposed to). He said that the surgeon had said that he had observed that the lymph node that he removed in my neck looked suspiciously cancerous. The haematologist would have a results of the biopsy by tomorrow morning when I came to the hospital.

So I was greeted by the doctor with a knowing grin and the opening line of 'do you want the good or the bad news'. To this proclamation I instantly thought that due to there being good news, it must be that I didn't have lymphoma. So I asked for the bad news in which he stated that I did have 'Hodgkin's lymphoma' to that I wondered and then asked 'what the hell is the good news?' I am not sure how many times my haematologist had used this opening sentence to disclose to a patient that they had cancer. To this I wish to offer some personal and friendly advice. When someone is being diagnosed with a malignant disease such as cancer (of any form) you don't fucken tell them there is good news. You inform them unfortunately that cancer was found and then you allow the weight, the magnitude and the heaviness of the situation to lay upon the people in the room. For those immediate seconds is when the brain although possibly in shock and complete disbelief begins to breath in the thick and gelatinous air of the nearly acquired diagnosis. The heart sinks, the saliva quickly disappears from the mouth and the stomach begins to churn. For after that second and for the presenting future you have cancer.

the good cancer