Welcome home

this is a family portrait of my grandma (sitting on the right) with four of her siblings and her mother Gertrude Ivy.

My grandmother and her sister Joyce were sitting watching a mid day movie as I entered the room. My grandmother rose to greet me and held my hands for a long period of time, which was the greeting since the news of my illness. It was at this point I realised my grandmother had a dark and almost charcoal colored black eye. "It just happened darling, my blood vessels just exploded a few days ago and now I look like a battered women, I tell them your great aunty did it to me", to this both women started cackling in a familiar and excitable way a cacophony of sounds of women who have known each other for a lifetime. I left my grandma's armed with a plastic container of stewed apple, which has been a constant gift to me since chemo began. The gift of stewed apple at one stage meant that almost nothing else was able to fit in the fridge due to the sheer amount of the stuff.

My cousin was driving me to their house in Tynong North, just past Pakenham. It was here that my aunty and uncle had prepared a completely vegan, wheat free and sugar free meal and had even purchased all organic vegetables and fruit for the occasion. We talked, did a Pilates video in the spare room and I fell asleep only to wake to the sounds of cockatoo's and parrots instead of traffic.

My family were very shocked with the news of the cancer, but just how my family deals with any news of trauma or illness they group even closer. I see my extended family constantly, and the family orbits around the idea that 'family is the most important thing'. We celebrate every possible holiday, graduation and birthday and non attendance is definitely frowned upon. When my grandfather was dying two years ago my grandmother took him home to die. One of my family was with grandma every day and minute of that month caring for grandpa and allowing him to die with dignity and surrounded by love. In his last hours all of his children and there spouses sat around his bed and sang and hugged him until he slowly slipped away from this life and into the night and sounds of grief laden sobs. His bed had been facing a wall of collages of the family, every day new photos would be removed or added to keep it interesting. My grandmothers house is like a shrine to her children and grandchildren. It is almost hard to find any clear wall space that doesn't have a photo of one of us, crocked teeth and hideously eighties fringe grinning from ear to ear in a poorly pressed school uniform, or a dated yellowing photo of one of my mother or her siblings in brown flares and a floral blouse.

My mother says the cancer makes her feel completely useless and alone. I never thought about the impact of my illness on my mother. I suppose when you care so intimately for your child even up till there adulthood it would be nearly unfathomable that they develop a malignant and serious illness in which they must become quite ill to overcome. I don't help by continuing to be an extremely independent and autonomous individual, but more and more I let her in to help with small chores or help navigate the bureaucratic nightmare that is to be part of the public health system. I go home to be with my mother, father and brother every fortnight after chemo, painted white and with a look of unease in my eyes I settle onto the couch for video's and a constant stream of meals and nibbles prepared by my mother and magazines and 'Gordon Ramsay' session with my brother. I feel content to let it go, not hold myself together, not grip the color in my cheeks and plaster a grin on my face. Just let go.

Round three

Yesterday morning I went for round three, yet this time I arrived with alot less dread or sadness. Steph drove me in. Ah resignation has truly set in I am finally grappling with being a 'cancer patient'. Stew and myself decided to go late, just because we could. Initially a fabulous idea to have half an hour longer in bed but one that meant we missed our usual corner and chairs in the chemo lab. I never thought of myself of needing things to be the same, I am usually a very malleable person who is not attached to ritual, but this felt truly difficult. New chairs, a new corner. the women in our old corner was sprawled out under a blanket having a deep and lustrous sleep. I was jealous of her for numerous reasons.

Another hour wait and then the same nurse served me up some new medications for nausea as I had spoken of the 5 hour vomit session that had occurred two Fridays ago in the not so private setting of a dinner party at my house. I told the only women present at the dinner who didn't know I was going through chemo that I had a stomach bug. My eyes probably gave me away, they usually do. Chemo went fine, Pullpa presented sandwiches and we sat munching and discussing the possibility of Barrack Obama becoming president of the United States. I was arguing that I didn't think that Barrack could win, that although he was extremely charismatic and a fantastic public speaker who could evoke much needed fundamental changes in U.S foreign and domestic policy, that the percentage of bigots in America wouldn't allow for his election. Stew spoke of how no-one thought he would be able to be a candidate, let alone his impending win over Hilary Clinton, he stated that he was the most charismatic and impassioned candidate since J.F.K and therefore the people of America weren't seeing his color but his charisma and shiny whites. The discussion was interrupted as I was plugged in and red liquid seeped up the tubes into my arm. Chemo went allot faster. Thank god for small miracles.

One patient behind the wall of the communal seating area had an allergic reaction to the chemo and was violently gasping for air. The nurses all left their chemo stations and ran to attend to her as her breathing was now in short sharp inhales with patches of moans and groans. She had almost a death rattle to her. I turned up my ipod and tried to distance myself from the reality of people in the other room who usually look like they are on the brink of death. I would see them as I passed through the second room to go to the toilet, wheeling my IV with me like an awkward and un co-ordinated dance partner, the patients in the other room are lying on beds, some due to just being tired or quite old but others because they are fighting for life.

Their skin is often pulpy and grey with dark bags under their eyes, sometimes a yellow tone is present indicating that their kidneys were protesting and the immune systems packing up. It is so interesting to watch the color changes of cancer patients skin. I had a shower this morning and starred absently into the mirror. My skin has weakened to a shade paler and slightly more translucent. This usually only lasts the first few days, but I fear it will take over from my predominantly peachy pink complexion permanently. The beds in the other room heave with uneven breaths and their hazy eyes speak of the unspeakable, of death. I always walk quickly with my IV to the toilet and back to my chair where people are seated and even sometimes chatting and smiling, their skin still has remnants of health and eyes speak stories of life and future.

Poppy seed cake was handed around that one of the patients from the lying down room had made. Although I have recently initiated a strict regime of no-sugar and very little wheat diet I couldn't resist and me and stew munched down the cake as the last bag made a v line for my veins and the beeper indicated my time was up for another fortnight.

Do you wanna touch my cancer?

"Do you wanna touch my cancer?" I asked as we lay next to each other in bed one morning, before engaging in a breakfast of muesli and stewed apples.

"no-one has ever asked me that before" he said as his hand agreeably slid up the sleeve of my t shirt and felt around for the newly acquired cyst in my armpit region. The cyst a glowing pimple of impurity and evidence of the ongoing battle my lymphatic system is having trying to keep the bugs and bumps at bay.

I lay back down on the bed and had a moment of realising the enormity of 'hanging out' with someone new whilst going through chemo and its entire menu options of symptoms and side effects that are ever present.

It struck me most poignantly when I looked up to see that my newly acquired lover was reading the pamphlet "chemotherapy and sexuality" from my ever growing library of pamphlets and books on cancer. His eyes flittered across the book absorbing knowledge on possible 'vaginal dryness' 'difficulties reaching orgasm' and 'sexual disinterest' as well as a whole host of 'quick and easy tips' to make sexual relations less painful, embarrasing or altogether implausible. The discussion that followed was also very symbolic of how darkly humorous sex and chemo truly are.

They are not completely incongruous activities 'sex' and 'chemo' but god the book makes it sounds that cancer patients often become primarily quite asexual and unattrative but luckily with good support and possibly some sympathetic loving, dark lighting and a hell of alot of lube you can still maintain a degree of sexual normality. I especially love the diagrams that are given (quite realistic sketches) of the most comfortable positions to have sex in. Positions that don't require too much pelvic strain, or ones that don't get your catheter and or stoma in the way of penetration. My favorite section of the good read that is chemotherapy and sexuality is the passage on how if you have unprotected sex in the following 48hours of chemotherapy you will give you sexual partner a dose of chemo, now hey no one said you didn't receive any benefits from dating a cancer patient darling.

Then there was the morning when I awoke next to the same lover with a sizeable amount of my hair sprawled and entwined in the sheets and pillowcases of my bed. Again possibly not the hottest or most attractive event (especially as I have just invested in white sheets!) but one that was downplayed considerably by the other person's maturity and understanding of the hair loss and its presence in both of our lives.

Sex used to not include a reddened scar on my neck from the biopsy of my cycst, continual hair loss or the need to discuss the present state of menopause they have put me in in the attempt to save some of my eggs and fertility. But hell I suppose sex is all about being open, raw and predominantly real with another person in a sacred space. Ah that was poetic. Sometimes sex just ain't all that sexy and this is never more evident then while you are having sex and you emphatically remind your lover to not bite or scratch you because due to your new found lack of immunity you will just not heal. Plus could they please refrain from stroking or caressing your hair as it is only contributing to its continual demise.

"by the way do you have any more lubricant?"

it began to fall

It is raining quite heavily outside. Since Melbourne has been plunged into a drought a few years ago the sound of rain is not as familiar and it therefore has quite a punctuated presence.

I love the rain. It is soothing and confining. It's syncopated rhythms speak of hot chocolates and cuddles.

My hair began to fall out on Wednesday the 14th of May. Not in great torrents but just subtly, suggestion its imminent departure from my scalp with a few strands clutched in an incredulous fist. I stared at the hair intertwined within my fingers and realised the great symbolism a few strands now held. So many times you brush off hair from your coat, the back of your chair or where it has awkwardly crept inside the crevice of an un- shut mouth with so little importance, a mere formality of being part of the mammalian species. But now the hairs as they descend during the day from my scalp to my daily life carry weight, meaning and an increasing baldness.

It is not a word I have been familiar with and to this day never believed I would be. Baldness is associated with middle aged men with comb overs or young people with new aged comb overs, a shaved head. It is a sign of bad genetics and a few gags over a couple of beers of the ever receding hair line of my relatives and friends is about all I believed would be my narrative around baldness. I awoke on Thursday and then again on friday to see a scattering of 'too many' hairs on my pillow. Not the 'hair on the barbers floor' amount but enough to be a visible sign that it was falling.

My friend told me of a film he had been working on in Brisbane which was about interviewing women and there connection to their hair. The connection being one of a sexual and aesthetical connection to their feminity, how they would feel if they shaved their heads. The director/narrator of the film eventually shaved her lusturous hair in the mirror whilst crying, her obvious distress apparent. I hadn't thought much about my connection to the dark matter sewn into my scalp. Whether it would change they way I felt about my body, my aesthetic and for that matter my connection to my femininity. I hold the belief that my sexuality and understanding of self is very much embroiled in who I am and how I carry myself, not necessarily the external package. But am I just allowing my first year uni feminist critique of the objectification of women and societal's unhealthy obsession and fixation of 'femininity' and 'beauty' to cloud my understanding of how I actually feel. How it feels to know that for the next 6 or so months I will perhaps not have any hair at all on my head, eyebrows and eyelashes.

that I won't have a thick sweeping fringe to hide behind but the ever present constant of head ware.........

One thing is for sure, I need more room in my closet for the debris of hats and head scarfs, doo rags and 50's styled head accessories that are creeping out of my built in robes onto the floor.

The nurses informed me it would be unlikely I would still have much hair by my third chemo, with three days until the fateful day I am feeling pretty confident, I may even say cocky that I still have quite a substantial 'Melbourne smith street asymmetrical black do' to parade around in the chemo lab.

Round Two

And they're off.

Joh is in the black corner with a fine look of determination on her face. Ready to go into battle with 'chemo' in the red corner. Oh the fight shall be grand. Such fierce determination on joh's face to beat hodgkin's and to take it down.

I woke on Tuesday morning and felt a little nauseated. Possibly sympathy nausea for how my stomach would inevitably feel after round two of chemo. I rolled out of bed and laboriously made myself breakfast. Taking the greatest amount of time to perform all of my duties, that kind of lingering one can only do when they are very hesistant to get on with a required duty. Like doing the old clean the room and wash the dog before doing the homework. Or deciding you need to watch ugly betty in bed before instigating that exam preparation.

I felt such a sense of dread about how I was about to go into hospital to invariably walk out feeling alot sicker and weaker. It is the mind game that is most damaging, knowingly putting yourself into the ring with chemo to walk out with a red mist on your face and a glazed sheen to ya eyes. I got to steph's house who was once again driving me to St Vincent's hospital. As we walked to the car I lay on the concrete floor of her driveway and did a child like tandrum beating my fist into the ground and kicking my feet in sheer obnoxious determination to make it seen how much I didn't want to go through with it. Luckily we both just laughed and drove to the hospital speaking of birthday party preparations and Bangarra dance companies new work that we both wanted to go see.

Chemo was fine. The waiting wasn't. My blood work took forever. When the results returned it was evident that although I had not too many symptoms and side effects from the chemo my white blood cells were hurting. I would need to inject Neulasta into my stomach every fortnight after chemo to force my white blood cells to be encouraged to be produced out of my bone marrow. Side effects included great amounts of bone pain in the back, neck, and any other bone mass in the body. This made me angry. It wasn't the possibly side effects, nor the idea of injecting myself it was the fact I felt I had failed. I felt like I had cleaned my room and watched twenty seasons of ugly betty and forgotten to study and this test I had failed. Many people don't go on these fucken injections, and if they do it is towards the end of treatment. As a dancer and physical performer I rely on the strength of my body for work and for all artistic endeavours I engage in. My physical strength is paramount to my sense of self. I felt like my bone marrow was making it very clear that it was already tired of this chemo regime and was on low productivity.

After butchering my veins with inserting the line the chemo went very smoothly.

It is now friday week after chemo and I am feeling some lower back pain but relatively no other residue of the chemo. I am once again liberated from the constraints of my multilayered symptomatic response to chemo. Oh how the air tastes so dam sweat and the pleasure of not being nauseated is so dam exciting.

As the weekend draws near and chemo is peeking its ominous head around times corner I reflect on a fortnight of dinner parties, yoga class, vegetable juices and assisting my friend John Flynn to complete his personal manifesto by donating my touch typing fingers to the process. The drones sing a raw and soulful tune in the background as I take heed of the fact I am nearly a third of the way through the process.

as surely round two will sink into three which will invariably come up with a sequence of numbers until the fateful day that my veins, stomach lining and indeed my soul are waiting for

the last round

Draino

It is the monday before. The monday before the tuesday. The tuesday that marks the second installment of chemotherapy. Monday's have a different glow. Monday's (well every second monday) is performed with a knot in the stomach of the impending Tuesday. Monday's don't speak of fear or even anxiety but just a quiet hum of sadness.

I explained to a few friends that chemotherapy was like drinking draino. Draino that is just sitting under the kitchen bench in arms reach. A small enough quantity to make yourself sick for a few days if ingested, possibly cause slight and permanent damage to a few organs but ultimately not enough to kill you. Like in the movie heathers were she washes down teen angst and a sense of the unbearable this draino is supposedly doing me good. The draino is 'saving my life'.

So I sit on the eve of the tuesday listening to the dirty three and awaiting a few quests that my housemate is having over for dinner. Like chit chat and banter and then possibly an early night to prepare for if that is possible the inevitable.

The draino......