The great debate continues…

Christmas has retreated with the faint sound of ‘ding, dong, merrily on high’ and the comfort of normalcy has evaporated. I have proclaimed my thoughts on chemo and attempted to round up supporters whose eyes reflect, ‘grateful silent thanks’ that this journey is not theirs. I had done a sterling job to buffer myself from my triple negative breast cancer diagnosis, only for it, to unravel like a over- excited child mid afternoon on Christmas Day.
If had been wise, I should have warned Greg, Sue, Charm and Rose, my support team that I was proned to ‘run from risk’ and to look out for signs of ‘rationalising’ my way out of chemotherapy. A child of violence, I had been programmed by circumstance and in my adult years, remained in a state of post trauma, resilient and ever ready to flee. Cancer was a foe that I could not run from. This time, I had to stay and fight to keep the flesh in which I inhabit.
I thought about the many battles that I had fought and won. I feared that I was like an ancient warrior who did have the strength to raise a sword and swing. I was overwhelmed by the enormity of the enemy’s arsenal and reduced to a sobbing mess. I am a woman who has been allergic to ‘drama’ any place other than which it belongs, in a medium for entertainment. To have the ‘cancer drama’ means that you are forced to engage with a roller coaster of raw and unpredictable emotions. To hear your pathetic bleating of fear and bear witness to your foolish attempts to avoid the inevitable.
I was ‘over’ it, before treatment, and now post first surgery the cancer ‘journey’ was wearing thin. Who would undertake a journey that would be fraught with fear, pain, despair, confusion, grief, anger, resignation and be willing to continue to travel not knowing the final destination. Having a diagnosis of cancer is like being in a constant state of overwhelming fear. Greg was ever stoic and while annoyed that I had delayed treatment to have a chemo-free Christmas, rallied to the call for arms to again debate the pros and cons of chemotherapy treatment.
I returned to the Web, to decipher the reams of conflicting paradigms and comments from cancer survivors and loved ones of the dearly departed. I decided regardless of my choice, I would never engage in advising anyone regarding options. I understood the dilemma that doctors, loved ones and allied health professionals face when asked to offer their opinion on treatment options. That which lies beyond the fear of litigation and power imbalance. It is truly an individual choice and responsibility, and there is no reason to seek approval of this decision as the price is your own mortality.

To chemo or not to chemo?

Advocacy of health treatment options for yourself is challenging at the best of times, but in the face of a cancer diagnosis, it takes bravery to select options that resonate with your spirit. I had been struggling on a philosophical basis with the recommended treatment of chemotherapy from the moment the words were entered into the air.
I undertook a literature review and read all information that was provided by the specialist and the hospital. I reviewed the regime of proposed chemotherapy drugs and their horrific ‘potential’ side effects. I read many blogs written by women who had been diagnosed with triple negative breast cancer and had undertaken chemotherapy. I read comments by women who chose to not undertake chemotherapy and lived well  over the statistical 10 years target, some up to 27 years post diagnosis. 
I read about ‘chemo brain’, a state of cognitive confusion and lack of short term memory recall that occurs for some patients during chemotherapy and for many remains permanently. This renders the individual unable to work, drive, read or conduct conversation as recall is limited. There is no screening capacity prior to undertaking chemo and the damage of the chemotherapy process is not necessary a cumulative one and at any stage of the cycles side effects occur on an individual basis. There are lists of common side effects for each drug, with fever, low white and red blood cell count, nausea, vomiting, diarrhoea,numbness and pain in hands and feet, constipation, hair loss and nail loss and mouth ulcers, making the top ten. 
In the mine field of decision making, Greg and I attended the pre-chemotherapy session where a cheery nurse informed us of the process and provided a folder of information. I sat in a chemo chair, terrified and vulnerable while responding to questions and listening to a constant flow of words which explained the process and patient expectations of the chemo experience. We left, shattered and frightened. I felt an overwhelming fear of surrendering my soul to the medical machine, which failed to individualise my treatment options but relied on statistical data to determine my odds of survival and reoccurrence.
My father, who turned 97 in November 2012, has lived his life, post bowel cancer with strict adherence to the principles of the body system. He has counselled, lectured,shared, imparted and been the media darling of ‘healthy ageing’. His mantra includes organic flour, low fat, high fibre, small portions of fish or chicken and no stimulants and artificial sweeteners. He often referred to white sugar and white flour, as ‘white death’.
Intuitively, the treatment option of chemotherapy and radiation, which would with chemo, reduce my body PH to 2, highly acidic and with radiation, to shrivel and destroy cellular structures at the localised site of the tumour lesion, did not sit comfortably with me. These options maybe the right choice or the only medical model solution to reduce tumour size prior to surgery or for palliative care at the end of life.
My cancer had been removed and it had not spread to the sentinel node or to any lymph nodes. Chemotherapy was offered as a method to ‘mop’ up cells which may have travelled to other sites, and a methodology to reduce odds of reoccurrence.
The 20th December was to be the first day of chemo treatment and we arrived at the oncologist’s to discuss my blood levels taken as a base level. Ironically we both had forgotten the requirement that I have an ECG which is completed prior to surgery in order to ascertain potential heart problems so that the regime of chemo drugs can be altered or monitored for potential damage to the heart muscle. The oncologist checked for previous related heart conditions and was satisfied to proceed. I raised the issue of chemo brain and she looked for a recent yet fully published clinic study which found 50 % of women undertaking chemo had ‘chemo brain’ three years after treatment had ended. I decided not to undertake the treatment and cancelled the procedure in the oncology ward and made a subsequent appointment in the 3rd January 2013 to review options. 
Today, Greg and I visited my general practitioner to update her regarding our decision to not undertake six rounds of chemotherapy but to instead undertake a bi-lateral mastectomy to remove all breast tissue. She was very supportive and wrote a referral letter back to my surgeon for a bi-lateral mastectomy. At this stage, I will not be returning to the oncologist for chemotherapy. 

New words for a new world

The following weeks after diagnosis was a whirlwind of appointments. Firstly with the breast surgeon, anesthetist,lymphodoemia clinic and my general practitioner. The breast surgeon discussed the pathology report of the core biopsies, examined my breasts and lymph nodes, drew on my right breast with a marker, announced my weight and height and recommended a lumpectomy followed by 6 weeks of radiation treatment. He indicated that presence of cancer in the lymph nodes would dictate if chemotherapy would be required.
In order to ascertain this, I would need a lymphocentragram, the injection of blue dye into my nipple and this would travel through my lymph system firstly into the sentinel node, which cancer cells may have migrated to. In addition as the tumour lay deeply in the breast and had been difficult to locate in my large breast, a hook wire was required to be inserted prior to the proposed operation. We paid, gathered the plethora of instructions and paperwork for the upcoming day surgery admission and when downstairs for a blood test. I had heard about 25% of various strands of information and fixated on trying to remember the new words like lymphodoemia and lymphocentragram.
I attended the anaesthetist’s rooms, whose opening comment was to determine if there would a gap in my private health insurance. He checked my weigh and measured my height. I noted the lack of personal photographs and a ringless finger. His parting words were that it was not my fault that I had cancer. I consoled myself that I needed only his expertise not his compassion and limited conversation occurred between ‘hello’ and the application of an anaesthetic.
I attended the lymphodoema clinic at Solaris Care along with a room full of women, some with husbands, friends and daughters. I had given Greg the day off hoping in the normal course of his job that he would find some relief from the tsunami of diagnosis. The delivery of information was presented in a sequential manner with opportunity for interaction between waiting for individual lymphodema test. One woman in her fifties in the third cycle of chemo, recounted her current state along with medications for anal, vaginal and oral ulcerations from diarrhoea and thrush and her lack of appetite and nausea. She wore her baldness without shame in this forum demonstrating that the community based resource created a safe space for individuals undergoing cancer treatment. She managed to freak both myself and another patient under the care of my surgeon.

Who started the cancer clock?

The great white screen beckons as I join the millions of iPad users, to record my journey. I have been in two minds regarding the need to purchase this ‘toy’ as I referred to it, however my recent health diagnosis has provided some perspective on, the art of living in the present.
Prior to my recent 51st birthday (6th October) I was contacted by Breast Screen ACT by phone, as several reminder cards had been returned to their office. In 2010 I had moved back to WA, and in the advent of moving and commencing another high level position in the public service, I had neglected to inform the clinic of my change of address. The phone call from the Australian Capital Territory (ACT) breast scan service reinforced my intent to have a mammogram and Pap smear, as a present to myself. I had had my first mammogram at 49 and my scan had been clear. I informed my female workplace administrative team of my intent to encourage discussion. Several comments questioned both my timing and the notion that these two uncomfortable experiences should be classified as a ‘gift’ to oneself. I disagreed.
Around the same time, I had a compelling desire to locate a new GP in the regional city of Bunbury. I had no evidence for a sense of urgency just an overwhelming belief, that I would need ‘someone in my space’.
Scanning the local paper, I saw an article on the newest doctor to join Brecken Health ,a Bunbury based multidisciplinary clinic. The article featured, a petite blonde haired doctor in her early fifties. I booked an appointment to discuss some post menopausal issues that had been troubling me. I also booked an appointment for a mammogram at the Bunbury Breast Screen van located at the St John of God Health campus that same week.
My new doctor commenced by engaging me with a series of detailed questions, the first of which centred on the current appointment, quickly followed by key questioning to determine my current health status. She asked if I had a recent mammogram and Pap smear. I recounted my intent, and made a future booking that week to undertake a Pap Smear. I felt confident that this doctor was governed by a professional and personal code of ethics and that she would apply a professional management of my health in partnership with my commitment to follow through on her recommendations and referrals.
I underwent the mammogram on the 5th October and returned to that afternoon for the Pap smear. While my results for the Pap smear were within normal range, I was contacted by Breast Screen, the following week requesting that I return for a second mammogram. This mammogram was undertaken by a different technician. It was excruciating, resulting in my vocalisation of ,’get it off, get it off’. The results were forwarded to my doctor who confirmed that a mass had been found and while this was distressing, recommended confirmation of the status before engaging in speculation. I was referred to Global Diagnostics for an high priority fine needle aspiration to determine if my suspicious lump was cystic. During this procedure, a core biopsy was progressed with 3 segments removed from the estimated 8 millimetre mass. This procedure was accompanied with local anaesthetic so while uncomfortable was not painful. The technican had great difficulty in locating and identifying mass with ultrasonic tools. The mass was located 2cm within my right breast positioned at 3 o’clock.
On 5 November, I made an appointment with my doctor, leaving work early. That day had been particularly challenging involving complex HR issues with several staff, the usual suspects, who had made counter-productivity and manipulation their workplace mandate and who were regular contributors to my stress level rising. Ironically it was these same people that needed to furnish my house with tokens of acknowledgement and appeals which bordered on the cry for absolution. I have learned the subtle art of boundary keeping. For many who felt such sunlight who did not deserve it, there has been only shade since my absence from work.
I wanted not to return to my administrative team that afternoon who I count as dear friends, if the diagnosis was not positive. my doctor enquired if I had got her message to come to the surgery, however I had not and had made an appointment as I was eager for clarification. She walked me through the steps that had led to the moment that we found ourselves. The words, ‘unfortunately it is cancer’ filled the small consultation room.
The shock was immediate, and the tears followed. I reflected concern for my workplace responsibility and that I did not have ‘time’ in my schedule for cancer. She firmly directed my attention to one challenge only, the fight to save my life. She called my new partner into the surgery and updated him. Under dark glasses, I signed and left the surgery. In the car park of the surgery, my partner held me tightly while I wept.


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