red mist

Sunday, September 12, 2010

Menopause the Musical!

I suppose the title of this piece describes the next phase, a new journey and a new identity. I am in peri-menopause or early menopause as the term means. Unexpectedly to myself and the IVF specialist my eggs where largely whipped out by the chemotherapy from Hodgkin lymphoma and I am in the early stages of menopause with premature ovarian failure. Failure! It was a month before my 30th birthday when I randomly went in for a blood test to identify the state and quality of my eggs, just in case I should be looking into freezing eggs in the next few years to preserve my fertility. The IVF doctor had discussed that she believed there would be minimal damage to my fertility but a blood test would be good to confirm the appropriate options for future childbearing. I breezed into the office on a cold winters day to find out the results without actually considering the possibility that my fertility may, well be up shit creek. She spent very few minutes telling me that the blood test suggested I had very low fertility and the eggs that did remain possibly weren't in the best condition and at this stage even IVF was not plausible due to eggs quality. I remember biting my lip and internally forbidding myself against breaking into tears or entering into the a diatribe about 'why this couldn't be happening, and that she had promised, well at least suggested that it was going to be ok'. I held it together clutching the piece of paper with the indices that on closer inspection and some internet research would tell me just how low my fertility was. Under 1.1, I am not actually sure what this indicator means except that under 14 is very low fertility. I went to Fitzroy gardens and sat down and cried. I cried long and hard until I got lonely and then called a few people so they could just listen to me cry. My sister was outraged, this wasn't meant to be the next phase. The next phase was always looking so bright, so normal and so dam fortunate after the cancer. I went to my sisters and we looked up the numbers meant and then I cried some more. 'You tell mum' I stated blithely, 'I ain't got the strength'. 'Maybe we could go to menopause the musical together'I joked. grim laughter. end of act one. curtains close. actors leave the stage.

Monday, March 30, 2009

sailing away

My scan was clear. I am now officially six months in remission. Unfortunately the individual informing me of this was still the same haematologist that i believe has absolutely zero people skills and or natural displays of empathy. So he called my name in the waiting room of the cancer clinic. My boyfriend was off buying carrot juice and the newspaper in order to entertain himself with what is usually an excruciating wait. I asked with a slight tone of incredulity why he was still in haematology as being a resident I thought he would be moved to another speciality in the new year. He informed me that not to disappoint me but he had another year in Haematology. I was seriously disappointed. Then he stated my scans were clear and although my lungs were given me grief everything else was healing as expected. I told him how I had fainted on the tram a few days previously to which he asked if I was pregnant, which has been the common response from friends and family. But after urinating on two of those oh too familiar blue sticks I was safely assured that fainting must of had another cause. The fainting story was quite absurd. I was waiting outside the tram stop I catch to head into town, holding a coffee and reading a political magazine. When I got on the tram it was crowded but not asphyxiating, warm but not hot and I was on the phone. I felt my head start to cloud and my legs begin to loosen there upright posture. I went down. Not gracefully onto a seat but I dropped to the floor (my head was caught by some very agile passenger) and the coffee went over everyone and everything. When I awoke cradled in the arms of two men I looked around at the scene. Around twenty people were starring at me trying to ascertain whether I was a junkie and had nodded off or if I under some peculiar circumstances had fainted. I was mortified. They had stopped the tram. The tram driver was shaking my shoulders and screaming in a thick Indian accent whether they he call an ambulance. I needed to be off this public transport vessel I needed to be away from the sea of unfamiliar and generally concerned faces. I moved swiftly towards the door and down the steps. I could hear the cacophony of concerned individuals still talking to me about whether I needed water or could they call someone for me. I did have a flash thought of how for those brief few seconds I truly enjoyed the commonality and general concern of the human race. It isn't often that I reflect positively on the human condition. This was one such moment.

It was wasn't the fainting that disturbed me but more the reason I fainted. I have this fine and somewhat tenuous relationship with my health where I feel my health isn't completely transparent and honest with me. Sometimes I just can't read what is going on. My lungs speak volumes for this as it has been the last month I have been truly struggling to breath and have been calling on devices (asthma ventilators) that I haven't used since I was a teenager. It feels like regression. My lungs were quite healthy and free from the excessive amounts of Ventolin I am now pumping into them before cancer. I know the chemotherapy contained a drug that caused the lungs to scar, then add the addition stress of the lungs being 'collateral damage' during radiation and you have there present state. It makes me angry and annoyed as I have thrown myself back into my life and I need adequate oxygen for that to be possible. I have already taken four days off work, cancelled a gig and spent countless dollars on naturopathic tonics and herbs to strengthen my lungs. What they need is patience, something I struggle with.

I had a very short dream of being on the ocean in a boat during the seconds I was out cold. It was lovely the warm sea breeze tickling my skin while the waves were lapping at the sides of the boat. The sun was perched high in the sky casting a bright yellow glow over the scene. I was happy and healthy and genuinely delighted to be sailing somewhere out on the magnificent ocean.

Saturday, December 13, 2008

Candy from strangers

This photo is taken in the tuck shop of a 'blue light disco' that was held at my house two weeks ago. It was everything the flyer promoted it would be, it was debaucherous, reckless and inspired a somewhat adolescent revelry in the behaviour of the participants. This entailed a splattering of party pashers, a few near brawls and a general vibe that was fuelled with ecstacy, lolly bags, 80's music and the very revealing police outfits my three housemates and myself were wearing (as of course blue light disco's are always run by the cops). So I stopped writing. Once my treatment ended last september I dropped my blog and my identity as a cancer patient like my wheat free, dairy free and sugar free diet (insert picture of tonights menu of pasta and mudckae for supportive evidence). But although I dropped the identity and to the most part the desire to even discuss it, In certain situations and with certain individuals I would talk. I don't mean just innane or witty banter I mean talk about the cancer. I realised that cancer and especially 'having cancer' is like walking around the world with a bag of full stops and exclamation marks. These grammatical tools I would occassionally drop into conversation in sometimes crude, slightly aggressive and or humorous and macabre ways. I don't know whether it was for impact, sympathy, drama or just merely because sometimes I just couldn't hold it all myself. So I would joke colorfully about the 'year of hell' or descriptively and with a science fiction flair describe the 'anarchic cells that invaded and attempted to gain control before being anniliated by chemical warfare'. Sometimes I would merely laugh about how 'when I was in menopause and my vaginal walls were tight as a nun' or 'when my hair was falling out and I was balding like Bert Newton (minus the toipee)' oh how you can drop such lines in so many varied and un related topics. I sometimes say the world for shock value 'CANCER' and watch as the immediacy of the word takes hold of the unexpected audience and the reactions of confusion, sympathy of just plain awkwardness is evoked.

Besides my narcisstic tendency to discuss my illness with complete strangers my life has resumed a healthy glow. I am working back at the community circus as an outreach worker and still performing and trapsing around the place with the 'britney spears tribute band'. My body has nearly regained its muscle tension and athleticism and I am relishing in the new found ability to perform pilates, acrobatics and hip hop dance. These things make me sane and feed me. I didnt realised how starved I was for the physical realm until I got back into utilising my body for expression, creativity and joy. Yep as naff and cliched as it sounds dance and movement is something that makes me feel alive and is who I am. There I said it and cliches aside it reminds me of how far I have come over the last twelve months from diagnosis to treatment to remission to health.

Tomorrow is my second scan as it has been four months since I was granted the golden ticket of remission. I feel quitely confident, yet my confidence is definitely laced with a healthy trepidation and general fear of the small chance the space invaders are back. I was sitting on the tram last thursday when the thought of the hospital, the weird gastric juice I need to drink before the scan and the scan itself caused me to loose control of my natural breathing mechanism and I suffered a slight panic attack. I regained composure by remembering there is only a 10% chance I would ever relapse with hodgkins. But as I have said numerous times when you are individual that became a victim and then a surivor of a cancer that effects 0.025% of the population 10% is a percentage that is extremely large and threatening. So tomorrow morning me and my boyfrind will wake and proceed to the hospital before nine to undergo a routine cat scan. The next ten days will tick by a little slower then usual until I get the results next thursday. Next thursday, next thursday, next thursday. hurry the fuck up next thursday...........

Friday, October 3, 2008

x rated

It is over. yep. the veins have retreated. my hair which I shaved in the last few weeks of treatment is starting to regrow into a spiky mop (I haven't had my natural mouse brown tone for over 10 years). my cheeks are rosy. my energy, although not entirely back to normal is slowly seeping in.

I finished radiation with a slight degree of pinkened skin on my chest and a bit of a sore throat. Nothing more. Nothing like what I expected. So now it is the rehabilitation and rebuilding after the storm. Feel like I have gone through my system with a cannon ball. For now I must reconstruct not only my internal equilibrium but my life in respect to work, hobbies, performance, travel, self

didn't realise that perhaps the hardest thing about having cancer would be the level of decision making you must make when it is all over.
Where to from here?

I went to Peter Mac a few days ago for a check up. It was one of the hardest visits I had made. I do not identify myself as a cancer patient anymore and have discarded the identity very quickly. To walk into the hospital and being surrounded by people going through the process of diagnosis, treatment, relapse, hope and grief felt alien and extremely hard to sit amongst. My first scan is in a fortnight, this is the scan that reconfirms my 'remission' but also has the dreaded loading of being the first chance for the possibility of relapse to of occurred. I feel quietly if not overtly confident that I have been cured permanently of cancer but there is always that niggling voice that states there is a 10% chance that it will return, and if it does it will be vehemently more malignant, determined and aggressive.

Besides the occasional scan and doctors appointment I am filling my time with yoga, pilates, friends and the quest to slowly discover what it is I want to do next year and to realign the trajectory of my life. The band is still spouting the wisdom of Britney Spears and we have gigs coming up through Melbourne and interstate. The performance group I am in 'Quiche Lorraine' is also looking at interstate and even international touring opportunities for next year. I myself feel nervous about my body. The confidence in my body has dwindled to such a degree that trusting it to not 'break down' again is hard. For someone like myself whose body is their instrument for performance and income it is hard when that body looses a battle with the duplications of tumors. It didn't remove the junk. it lay its barriers down and let it in. Being reliant on the strength, composure and performance of ones physical and kinetic self requires a great level of knowledge of that machine. How did I not know that tumors were growing throughout my body for six months? The doctors still will not categorically state that the persisting numbness and co-ordination problems I was having before the diagnosis are integrally related. All I can think was that the body operates in strange ways when it has unwanted visitors exploiting its delicately balanced system. Perhaps my body's only avenue and agency to get me to find these unwanted quests was to become regularly incapacitated and numb.

I liken cancer to vomit
When I think of cancer and cancer treatment I feel nauseas. very nauseas.
Balsamic vinegar and Thai food don't taste the same.

I liken cancer to being exposed
to open medical gowns and strapped breasts
to hair follicles decorating my pillow and lover
to my story being whispered in corridors and behind closed doors

I liken cancer to change
I changed my pace
my address
my rhythm
my menstrual cycle

I liken cancer to a distant story.
One that seems to have a strong narrative but one which I am gradually becoming distant from. as if looking through a rear view mirror as you place your foot on the accelerator. Just need to work out the direction in which I wish to drive.....

Tuesday, July 29, 2008


Today was the beginning of the radiation. I had already gone to the hospital for the making of my body cast and mask. Which in theory sounded like I was going to participate in an exciting experimental art project, or prehaps a day at a three year old kinder. The result was more bondage meets Iraqi prisoner Abu Ghraib style. The body cast was created using foam that solidified around my body as I lay very still on what was like a tanning bed. Then the all exciting mask, this was a hardened piece of plastic that was moulded to my face and then fastened to the edges of the sun bed. The mask grewer tighter and tighter and I was armed with some bells in my left hand in order to ring loudly if I needed the attention of the radiation therapists due to the fact the mask made it near to impossible to verbally communicate. A small inscision was made for the appropriate breathing procedure to occur. The sensation of the mask was likened to the feeling I could imagine from falling hundreds of feet out of a plane and the skin been drawn upwards towards the plane as you plummet by gravity to the earths surface. My breasts were then strapped to my arms with tape to try and remove as much breast tissue from the central zone of my chest, in which the radiation beam was to be shot. Finally a small tattoo was performed on the centre of my chest with blue ink in order for the lazers to be able to be lined up with ultimate precision everyday with my body. They therapists then scooted around my body armed with cameras in order to get all of the angles for proper replications to be performed during the daily radiation sessions.........

17 radiation sessions to be precise......

This is the pinnacle of my career as a medical chimp, a cancer vessel being explored, probed, dissected, objectified and violated.....all with a cluster of bright colored christmas bells tucked neatly into my left hand

So the first session began, the mask was placed over my head, it felt suffocatingly tight. The tattoo was lined up with the lasers. The bells were placed into my left hand and the therapists all left the room, scampered behind walls of glass and possibly steel so that they would not get a minuscule amount of secondary radiation that was being directly pointed, aimed and fired into my chest area exploding cancer cells but also radiating my lungs, heart, skin and bone marrow.

A few tears dropped from my tightly shut eyelids and meandered down my cheeks and collected in my ears.

When the therapist removed my mask after thirty minutes of tests and two short doses of radiation she saw the tears and remarked how the mask must of been so tight around my eyes that it had made them water. I agreed.

Why isn't the fact that I had just been undressed, strapped, pulled, suffocated and then radiated from back to front been enough of a justification for a few tears to fall to mark the initiation of ones process in the radiation mill.

I left after a visit to the nurse who recommended sorbolene cream in case or when my skin begins to look dry and red and the need for a few blood tests. My arms still with the memory of being so very battered and bruised instinctively recoiled towards my chest. "you don't like needles?" he asked. I looked at him incredulously "does anyone like needles after chemo?"

In my new found obsession for distraction my boy and I went and saw a documentary on William Burroughs. Burroughs was a beat generation member, writer, painter, social critique and from the documentary a lover of cat's, opiates and hand guns. Burroughs believed artists were the real architects of change. He also so adversity and trauma as leading to products of creativity and strength and once accidentally shot his lover and mother of his child, to which he believed gave him great inspiration for his writing. Maybe it is true, sometimes we need great tragedy, trauma and to truly wriggle around in the darkness to create beautiful and provocative art as well as strength of character. I Can't wait to create a performance art piece based on radiation process......genius!

Wednesday, July 16, 2008

reaching radiation

I have finished chemotherapy. That sentence is something I had been wishing and fantasising about saying since its initiation three months ago. I had been told by my oncologist that I would possibly have another five chemo sessions to go before a possible course of radiation therapy. With this daunting outlook I headed to Peter Mac cancer hospital to meet with the radiation therapist. A female doctor in her late thirties advised me that I had two options. I was to either finish a course of six chemotherapies or complete 3 and a half weeks of radiation therapy. The choice seemed to have two players, both were equally as villainous and depraved and both were staring at me with beguiling smiles beckoning me to their lair. She explained the short and long term consequences of radiation therapy, this included short term burning of the area been radiated, fatigue and a possible sore throat. The long term effects were a little more sinister and included secondary cancer in the form of breast cancer and or the possibility of thyroid dysfunction. Long term skin discoloration and nerve damage was also a possibility. armed with this information and after having a thorough discussion with the oncologist in the chemo lab at St Vincents I decided that the toxicity of the radiation was slightly less then undertaking six more chemotherapy sessions. The continual chemo would invariably lead to the exponential rate of being sicker and weaker and possibly create permanent lung damage from one of the chemicals in the chemotherapy concoction. The lesser of two evils? Decisions where both the outcomes are not optimal or even palatable is so very difficult.

I start radiation in a fortnight,

till then the food tastes sweeter. My arms don't ache. My chest doesn't heave. No tears haven't fallen from the captivity of my eyelids. My hot flushes and thus menopause will slowly wear off. Life feels lighter, more manageable and has the alluring sense of nearing the end of this chapter.

Friday, June 27, 2008

not waving drowning.....

Yesterday I began to cry and I couldn't stop. It has been a while since one of those cries. Those guttural and animalistic cries that comes from the bottom of the sadness. The cry appeared at one of those unexpected times, at the kitchen sink whist doing dishes. I had kept the lid on the sadness for a long time it had not broken by needles, vomit, nausea, insomnia or hot flushes but strangely it couldn't make it through the domestic chore of dishes. I had been suppressing any urge to realise that although I was making it through this bizarre journey with a large amount of ease and at times confidence it is also true that it's so dam heavy.

When you merge all of the colors in your life it becomes black, this blackness is what I distance myself from, but sometimes it just eclipses the light.

My present insomnia is painting my days in a thick non -lucid cloud and I am finding it challenging to remain so muddled in my daily activities. From so much action to a state of inaction, a challenge in itself. My body is also feeling the constraints of being a lot more stagnant and languid. It longs for the fast paced life of an acrobat, a taught and constantly fluid state of being.

Insomnia is a bitch! Last night I went to Barney and Lou's and was dosed up on sleep tincture and Valerian tea to try and assist my passage into sleep. I awoke at three and did the routinel removal of bedding to ease a hot flush. But then surprisingly I found sleep again and we enjoyed each others company till dawn.

At dawn I woke and remembered that the boy who a year ago broke my heart and allowed a stampede of buffaloes to run over it left the country for seven months. Sometimes I wish it was seven days, others I wish it was seven years.

"The fall from you is such a long way down" (Beirut lyric)

Hearts are a slow mending organ, possible symptoms include eternal scarring, emotional baggage, spontaneous tears, fits of anger and a glimmer of regret, please see your doctor if you haven't began to heal in 3-5 years.....