Coming up for air from 5th chemo- one more to go! Learning to address new levels of pain in bone and muscle – bodymine can feel very old some days and hears words like ‘osteo arthritis’ coming into its vocabulary! Good news from recent scans – the bones are not metasticising! I am making resolutions about becoming a calcium rich food guru and work out junkie to survive. Asking the Grandmothers and any other energy sources for 20 years of meaningful life yet to come. Good for nothing at the moment just the same – resting, reading and pottering with meaningless chores about the place – hate the feeling of even a ‘wasted’ hour let alone days at a time without a sense of achieving anything- what a work tragic I am! I have completed a mosaic project and almost through a second and my first patchwork book cover is a day away from its amateur accomplishment… but that is play?
New metaphor
There is a point where all the metaphors fail. I look for new poetry to address this fever which refuses to go: 37.8 again this morning, heading in the wrong direction. I notice how the ruthless passage of the chemotherapy destructive/life promising drugs settle on sites of the body’s history as if it is remembering its damaged places. I even thought that I extracted a tiny fragment of glass from the scar in my forehead from the car accident 40 years ago. Pain is largely left side centric where I always seem to injure myself: ribs, knee, ankle and the dark pain that radiates from the low back. Observing these patterns of pain I decide that my mental strategy, to regain some sense of control as I wander lost in this wasteland, is to imagine that my pain history is being exorcised. Burning feels like the process rather than any gentle erasure. I am always heartened when I see a green shoot on a blackened trunk after a fire. Burn on chemo. I live in hope for the new body.
Out of control
Out of control- that is how I felt, body mine. Temperature mounting. Dreading the transition into the danger zone -‘at 38.2 you must be transported to the nearest hospital emergency’ the instructions said. At 38.5 I was struggling to put ice packs on, eat iceblocks, stay cool at home. But the temparature would not budge. I finally called the ambulance, weeping with relief when they came. Now I was a ‘hot’ patient in Bundaberg Base Emergency. All purple plastic aprons and rubber gloved treatment. CHIP the community nurses proved skilled at accessing the port. They were pleased to have the practice to get their hours up they said – they were super thorough and I am sure I had the most sterile port access possible. I am 24 hours in the observation booth amidst the dramas of day and night life in the city. I watch humanity wheel and strut across my doorway. Staff are fantastic. I am not neutropoenic – there is still some white cell activity, but borderline, so I don’t need to be isolated completely. I did have to share the public conveniences which was distressing at times. Being off the hospital catering track I survive on the occasional begged white bread sandwich and sweet biscuit. Ever resourceful I work out where the tea making kitchenette is! There is evidence of a urinary tract infection as the culprit. I am pumped with strong antibiotics through the night. I go home with oral Amoxycillan in the hope I can manage. 24 hours later I am back with a high fever and transferred to Friendlies Hospital as Bundy Base is chockers. (Hooray for private health insurance). Dr Strachan comes late in the evening on his rounds & takes a case history. He prescribes 2 intravenous antibiotics to be applied until the temperature stabilises. He later adds a 5 hour infusion of iron due to evidence of anaemia. I am grateful for this and feel increased concentration levels almost immediatley, while he says it will be a week before the total benefit is felt.
Pain oh yes
I have been cracking hardy all along. I deal with the side effects of chemotherapy and don’t want to worry anyone with the challenges I face to my body; the daily insults of discomfort, skin eruptions, ulceration, hair loss, dry mouth and eyes. I have managed them all. Understanding the treatment’s rhythms as it worked through my system I thought I was going to romp through the second round. But this new drug: Docetaxel is a beauty. I felt strong on the first two days. I guess the steroids in the mix kept me bouyant. Yesterday I felt like the building had collapsed on me. Every bone and muscle in my body is aching, legs are stiff and walking a little uncertain. I am sitting in cool bicarbonate of soda, epsom saltas and detol baths to relieve aches, rashes and inflamation. I had boasted that I was not using the prescribed pain killers. Believe me I am taking them all religiously and admitting defeat by actually lying down. I hate what feel like wasted days – but I am surrendering for a bit. See my white flag. I trust that the battle goes on successfully in my cellular life as I sink beneath a cloud of endone.
Healing song
Karl Neuenfeldt, musicologist, lover, collector and creator of fine, soul-touching music across cultures, producer of Seaman Dan’s successful recordings and Seaman Dan himself, singer and musician from the Torres Strait, his tuneful crooning voice strong into his 80th year, both sit in my living room. I have prepared a luncheon and they have come to gift me with healing song. My sister Maureen arrives in time to share the meal and the impromptu concert. Close friends in life and music, Andea and John, are here to support me and the visit. Karl has a ukelele and guitar which he handles with mastery and affection as long-held extensions of his body that bridge the space between his loving heart and his complex world. Seaman Dan goes easily and gently into his favourite tunes: ‘I’m From TI’, “Welcome to the Torres Strait’. They play new versions from the album currently in production that will revitalise Nat King Cole melodies with Seaman’s unique warm-honeyed croon. Seaman ‘performs’ from the comfort of the Jason recliner with a tender smile to each in turn embracing us as audience. His hands occasionally move out in a gesture of intimate gifting. We are all in his spell. I look at the faces of my guests – soft cheeks, loose jaws, eyes relaxed and open. They are in the spirit of this gifting. They understand the exchange, know instinctively how to receive and to give back from their focused presence. I have always been more comfortable giving than receiveing. Today I open to the gift- humbled and privileged by their presence. I soak in every rhythm, every tone, every gesture. The room is suffused with a gentle healing love. The meal is a success. The farewells affectionate. We all vow to visit the Torres Strait without delay! Even after all the evidence of the visit is cleared away the space is filled with echoes of sound and feeling; the memory enriched with forever images of healing love in action.
clown
It is early morning. A wretched few days & nights battling intense stomach pain; the 6th day chemo trial for me it seems. Beyond sleep I have dug into the bottom of the sewing basket and retrieved an old ceramic headed clown doll with a leg off and costume awry that has awaited mending for over 10 years. I am focusing on the task as if there is some kind of urgency; as if it has some importance in my transient existence. His ruffle is replaced, the leg secure, sleeves gathered once more on this miniature Grimaldi. The shattered head is long mended, if poorly, but cries out for tufts of orange crazy wool to cover the scars. An orange cummerbund would finish the costume and have him ready for a shelf performance. I will find them today.
New Year
Ahhh a New Year. Into my third round of chemo- have the symptoms fairly well pegged and managing them albeit a bit weak and wobbly. Almost daily walking, meditation, gardening, mosaic, housework and entertaining friends. Red cells were low so had 500 mls A+ blood transfusion this time. I blessed any donors of the type because the effect was immediate- body temperature returned to normal, head cleared, energy returned – and I couldn’t stop talking (that was probably considered a drawback for my homeward driver!). Of course now I am feeling more in control they change the recipe for the chemo for the next 3.. another learning curve coming up. The fellow traveller in the chemo delivery chairs this time had a book of the 2012 stars and numerology. I was amused that my birth dates plus 5 which was the tally to ascertain a numerology reading for the year came to 10 which is 1 which is all or nothing. Bring it on!
Why a portrait?
I paused on the publish button for some time before I sent out the ‘portrait of a mastectomy’. The image of embracing my condition had grown to the point where it was a meaningful action for me. I thank you for the positive feedback, it has meant a lot to me. You guys all got it! And my brothers comment is true- now you have seen it we are both scarred for life. But where did my drive to do it begin? When I first met with the surgeon I asked to see images of mastectomies. If you have not experienced it directly, as I hadn’t – what picture do you get in your mind when someone mentions the surgery I wonder? Are these images better or worse than the real thing. The images she showed me were understandably clinical – a record for surgeons. Very professional. To the uninitiated they presented as decapitated torsos on limp bodies which resembled crime scene photos (as a fellow traveller suggested to me), mug shots (minus the mug) of prisoners at the point of incarceration awaiting their prison numbers or the kilogram sign for what weight of turkey was being presented in the supermarket! There was a kind of terror at the inevitable and I made my mind up on the spot that I would find an aesthetic in all this! I knew also that I would have both breasts removed as prophelactic ( advised on statistics of return of the condition) and for aesthetic reasons- I also knew in my heart of hearts that I would not be wasting any plastic surgeons time on remodelling me or wearing false breasts in adapted bras, although I respect the desire of many women to take those paths and support them in doing so. I asked Mike to plan the photo shoot with me and he selected the site. I had been standing perfectly still and serious of expression when the final position grew out of a spontaneous move enjoying the strong south easterly that came up just before the rain. In reviewing his many shots I found a statement that I could live with at this stage of the healing. Jinx was more interested in the jewellery of course! The necklaces were from Nepal- the closest I could get to Inanna and the cradle of civilisation! Ironically they are decorated with rupees bearing the image of George the Fifth – echos of colonisation! They were used as dowry. The bride connection, the symbol of wealth, of value were not lost on me. An image so complex, like the experiences surrounding this transformation. What had I hoped for the viewer? I hoped that everyone would turn to their partner ( men can also develop breast cancer) and appreciate anew the beauty of their breasts, caressing them with love. That fellow travellers dealing with mastectomy would find their own unique way to appreciate their future bodies and even celebrate them.
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