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reality check

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My oncologist rang yesterday. I had asked her to check my file and see what percentage advantage there was in taking the hormone blocking medication for 5 years, as it was causing several side effects that were difficult to live with. I hoped she would say 3% and I would take the risk and get my body back into some kind of natural rhythm. However she said that the risk was certainly higher than a few percent – with the two aggressive cancers in the breast and the single node that had metastasized. These few years were the last window of opportunity to clear the system of the rogue cells. ‘We could not be having this conversation in 2 years. If the cancer has taken hold by then it will be untreatable. You wont want to say at that time- there was one opportunity that I did not take up…’  So I am going on the second option of drug: Tamoxifen, the old tried and true that may have fewer side effects and be better for my bones than the Arimidex. Will start this new challenge next week. A sobering reminder that I am not out of the woods yet!

 

Playing up

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I am reminded after the third performance of the Olde Tyme Music Hall (in which I sing two dozen songs with the chorus of 40, dance the old soft shoe, do a comic routine with Mike who plays a card sharp, while I am his dumb audience volunteer, narrate the melodrama and appear in sundry crowd scenes!) that I love to be on the stage Mrs Worthington. We performed yesterday at a farm outside Childers – having to set up a stage, tent dressing rooms and fiddled entries and arrangements to accommodate the small space. Everyone took it in their stride and an audience of ninety four had a ball with us. I am exhausted today but smiling on the inside. Doing this gig meant not taking myself so seriously (me who was more used to the high art of Brecht & Shakespeare). I had to overcome my prejudice against bad jokes and ham acting and learn to go with the flow and enjoy those things over which I had no control, while at the same time relishing the work with the community and the chance to sing. I seem to have managed to get myself insanely busy at this point. Funding I worked for from the Flexible Touring Fund with Arts Queensland has meant full time labor to make it happen – to bring gin buses from 4 destinations to matinees and to tour the show to two other places. It has meant developing a Wide Bay network for Pilotlight Productions that would have taken 3 years of normal development. I actually look forward to writing the acquittal! Then I will rest- traveling to Sydney and Melbourne in November to family and friends. I have done all this while wrestling with drug therapy- have gone cold turkey on hormones and any other strong medication in an effort to get my body back and find myself again. It has been through a lot the old corpus – but I feel like I am coming back and with what I have managed to sustain alongside people thirty years my junior in the past few weeks I think I must be ticking along okay!

Over it

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Vanity and boastfulness. I would have those ugly flaps off the back of the mastectomy scars, I would boast that I hadn’t contracted any flu germs…. Still dealing with residue of infection in the scar on the side of the cancer (no lymph nodes to do their usual work) and with bronchitis post that horrid coughing flu! I knew it was a virus when Mike came down with it 3 days after me! You know the feeling when you just want to be ‘over it’? I walked to the beach this morning past the wetlands (dignified whistling ducks, scooting dotterels, and pristine burdekin ducks). I am determined to keep moving through aches and pains. It is so easy to find excuses not to move. Rehearsals are hotting up for the Olde Tyme Music Hall with Pilotlight Productions in Childers. Am enjoying working as an acting coach, a rough choreographer and performing as well. We open on 6th October. Will let you know how we go and try and get some pics.

new body

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Today I go to the surgeon to have stitches removed from the tidy up surgical  jobs removing the fleshy tags left at the back of the mastectomy scars and the port-a-cath that was secured in my chest for delivery of the chemotherapy. These will be the final challenges to my old body and herald the start of my ‘new’ body- the one I take into the future. In the same week I have had major dental work done reviewing the teeth post chemotherapy and have a new triple crown covering an old toothy gap as well! In a week or so my hair will have grown back enough to display the little flourish of chemo curls that are making me smile and I will take a celebratory photo to share. Some feeling is coming back into my feet now and I even risked cutting my own toenails this morning (not so safe when you cant feel a thing down there!) Had an email from Breast Cancer Network Australia yesterday. They posted the video that Brad Marcellos made for ABC Open with my revealing scar photo and it had more hits that anything they have ever put up. So they have asked me would I be available for other media interviews as they are often asked for referrals to cancer survivors. I agreed as long as it is clear that I am not identified with this role- I am an artsworker who happens to be a cancer survivor. I have been invited to speak to a high school community in Bundaberg who are doing a cancer fund raiser in November. I have entitled the talk ‘Down the Snakes and Up the Ladders’ and will endeavor to bring my clown out to consider the journey thus far!

Clown

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While I was at the Stillness in Action program recently I made a drawing, as you do in these processes, that was a projection into my future life. I included words like ‘sing’ and ‘play’ and ‘theatre’ and drew an absurd red jester’s tri-cornered hat across the whole page – over everything.  Since I returned a local group has asked for my assistance to set up an incorporated association, Pilot Light Productions,  for theatre work involving youth and community; to write their grant applications and perform in their Music Hall -( singing and being as comic as I like!) The Woodgate Singers performed last week in a fund raiser for Uniting Churches and I was asked to join a fellow singer as the clown to her straight act and in my dressing gown, a beanie and slippers, carrying a  very large coffee cup that would hold an aspidistra, I brought the house down. (How I loved the moments of bathing in audience laughter). Then today at the Childers Festival in front of 600 people I took up the invitation of the Elvis impersonator to imitate Elvis moves and win a Brass Monkeys T Shirt  (not a single other soul would do so  – and the song was almost at an end and I didn’t want him to lose the audience connection!)  So I shimmied forward, took up the performance space at the bottom of the stage and  did every Elvis move I recalled that my body could approximate (stiff legs, numb  chest and feet and all). He came down from the stage and told the audience he would put this female Elvis to the test. I then had to imitate every move he made and he kept handing the mike over for the last word in ‘…love you too much baby’ and the backing ‘doo das’ in between. Got every move as best I could (hooray for a movement history), stuffed up a few ‘doo das’ but always got the ‘baby’ and the audience got the fun that he had hoped for (they gave me great feedback after). He decided I could dance and sing and had earned the T Shirt! So I got a Brass Monkeys men’s XL which I will send  to my brother to wear in Sydney where it will probably read like a weather report! So friends be careful what you wish for!

Mindfulness

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Just returned from 4 days in Sydney at Stillness in Action – a retreat to build skill in mindfulness. I feel the need to meditate to support my body in this stage of survivorship. I found it tough the first 2 days into the training- on the first sitting of 45 minutes I am sure I could hear  3 inner conversations running parallel with background music! Took me a while to settle in the moment and to understand the concept of ‘self compassion’: where I don’t give myself a hard time for having a mind like a monkey and instead let the thoughts come as welcome guests until I can find my way back to the ‘now’. Have been good at being compassionate for others but managed to be pretty tough on myself over the years. Always found it hard to accept praise or even to let applause in physically as I was too busy thinking how I could do it better next time and what was not perfect in any presentation. The experience has slowed me down. Has to be a good thing. I am appreciating small improvements from the curling of my new hair to the near normal nail growth coming through under the rings of chemo damage  on the shattered old ones. Brad Marsellos of ABC Open interviewed me about the photo of the scars recently and it has gone to air and been picked up by Breast Cancer National so it is out there somewhere doing its thing.

Entering survivorship

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The new term for finishing major therapies for cancer and moving back into life is ‘survivorship’.  I am part of a research project conducted through Griffith uni and have just filled in the questionnaire they sent – one of the questions was something like: ‘Think about who you are. To what extent are you now defined by your cancer?’ I found myself marking very heavily the ‘Not at all’ box.  I also realised from my responses about joining support groups that I was ambivalent about being hit with negative stories as well as positive ones from fellow ‘survivors’ but that I was keen to talk to a psychologist about fear of recurrence.  I guess that’s where I am at. I saw the ongologist this week and after I listed all the side effects that I still struggle with she smiled benignly and said: ‘ that is about right for this stage of the process’. Time and patience and the belief in the cleverness of the body is all I need it would appear! I’m fine to go there. I amused her by saying that I was ordering new business cards (my name, mobile phone and email are all I am sure of but it feels good to make an investment in a future!)  and by checking how long before I could get a tattoo. It was the first time she had been asked that question. She agreed 6 months should do it and asked to see the results! Went back to line dancing on Friday morning, unsure if one leg would go after the other. I managed a dance or two then a rest for two! As the class clown I sang the chorus of the first number out very loudly: ‘You aint woman enough t0 take my man!’ then squealed with delight at the end of it to think I could actually dance with numb feet and spasmy legs! The Woodgate Bootscooters squealed with me and told me I had been sorely missed and must never go away again!