Jill’s Story

25 Jan 2019 by Krystal Barter

I suppose hiding somewhere at the back of my mind was always the “when” rather than the “if’’. My overactive mind continuously wrestling with the emotional maybe’s and maybe nots.

Each October for the past twenty years, the day of my annual mammogram and ultra sound has had me anxious and emotional but above all reflective of what my mother and my twin sister had endured. The admiration and wonder of the bravery of their breast cancer battles which are with me each and every day, even more vivid in my heart.

Each year, I have left the X-ray centre, with the wonderful “all good, you are fine, see you next year” words repeating in my mind and the “I told you so” finger wagging at my subconscious. The relief and gratitude of the confirmation that I was okay is hard to put in words, but I guess any woman who has the family history I do and has lived the breast cancer journey with someone they love, will understand.

The end of October 2011 was no different: the all too familiar fears, anxieties , prayers and butterflies of the pre-mammogram hours replaced with the renewed optimism, buoyancy
and thankful prayers when the tests were over.

I was not startled or unnerved when my gynaecologist called a few days later. He had treated me for the twenty years I have lived in Australia He understood and empathised with my situation and would always call me to confirm the “all okay” test results.

He, among other medical professionals, had for years advised and encouraged me to undergo the genetic testing for the BRCA gene. In addition to my family history, I am of Ashkenazi Jewish descent and as my beautiful 22 year old daughter so directly phrased it “so we are hit with a double whammy”.

It was one of those things I was always going to do, and yet despite the nagging conscience that I really should as I have two daughters who could potentially be at risk, I just never did. Truthfully it was the pure “Ostrich In the Sand “and “Ignorance is Bliss” phenomena that stopped me. “ Sheer fear and I don’t want to know” were a lot easier to cope with.

The gynaecologist mentioned a small cyst in my right breast but assured me that this was certainly a regular cyst presenting completely benign qualities. Knowing and understanding my panic, he kindly offered to see me again and explain to me in person why this was of no real concern.

At that consultation, he suggested that although I have had no previous indication of any malignancy, given my age – (I am now 53) and family history, I should see a breast specialist in view of future prevention.

The specialist I was referred to confirmed that the cyst was benign and reassured me that the latest mammogram and ultrasound presented no sign of any problem at all. However, he did advise me to have an MRI scan to begin a long term management program. I felt very lucky and comforted that I was now going to be “managed” by a leading specialist in this field.

The MRI scan was scheduled for Friday the 2nd of December and I went back to the XRay centre feeling positive and blessed.

I was taken aback but still not overly alarmed when the radiologist entered the XRray room to advise me that they were going to prepare me for a biopsy. I explained that this was not necessary as the specialist had confirmed the cyst was benign and nothing would be done about it.

The “Oh No – it’s not the cyst we are worried about, we have a far bigger problem here” response was the moment my world froze and the words of my twin sister became so very apt. “You never know which day it is that is going to change your life forever” she said.
The next couple of hours were a blur of robotic mechanism, a surreal sense of being there , but not being there, hearing but not hearing, understanding but not believing.

That was also the day though, that I knew beyond anything, that Kim and Kirsty were the two most precious and wonderful daughters in the world and that I was not going to go through this massive ordeal alone.

We spent the weekend in Kim’s bed, no longer crying but digesting, accepting and hiding. Hiding from the world, until we were ready to face it and tackle whatever it was that the next few weeks and months would bring.

By the time we saw the breast specialist and oncology surgeon a couple of days later, the lumpectomy was booked for the following week. He explained that he needed to remove the malignancy as soon as possible and that the outcome of this initial surgery would determine the path that followed.

We were all too well aware of the enormous consequences of this and that only once the lumpectomy was over, would we know the extent of what we were dealing with.

I vividly remember waking up from the anaesthetic to two of the most beautiful and reassuring smiles and to the words “It’s okay mom, it’s really, really good”.

How blessed was I that there were no lymph nodes affected at all and that the outcome was, in the surgeons words , “ the best he could have hoped for”.

Less than two weeks after the surgery, Kim, Kirsty and I travelled to New Zealand to visit our very special friends. This was planned months before. Although we were nervous to travel so soon after the surgery, I knew we really needed the distraction, fun and excitement ahead of the next daunting steps in this breast cancer journey.

In January I had to face what I had avoided for so many years – the genetic testing. This was possibly the most stressful and anxious time for me, knowing how the outcome could influence the inherited possibilities for Kim and Kirsty.

If I had any doubt before that I would carry the BRCA gene, this was certainly eradicated the second I was diagnosed. The testing procedures were just a formality in my mind.

The 6 weeks of waiting were long and difficult but the outcome was pretty certain in mine and in the minds of the geneticists. Some pretty strong gene was clearly running through our family.
The BRCA A/B genetic test was negative.

I cannot describe this any way other than to say, we were simply stunned. In one word – Disbelief!

This is what I have worried about for over 25 years.

The positive implications for myself, Kim and Kirsty were overwhelming.

A few weeks later, the surgeon caringly and sensitively advised me that he still believed that the bilateral mastectomy was the best option.

Honestly, on some level I was relieved. I knew in my heart this was the way to go. I was given the choice of treatment and regular monitoring as an alternative. This is such a personal decision and probably a difficult one to make for some. Not for me, I knew I did not want to live with the stress and uncertainty. The medical specialists believed that there was no doubt of the presence of an unidentified family gene and I had to do whatever I needed to, to minimise the risk of recurrence.

The surgery was scheduled for the 2nd of May.

I knew this was more complicated physically than the lumpectomy, but I was at peace with the decision and emotionally very calm. I will never forget what my mom and sister had both been through and kept up my silent conversations with them, “If you could do this with the bravery and dignity that you did, then so can I”.

Which is not to say it is easy. I remember looking at myself in the mirror the night before with a strange, once again, surreal feeling, thinking ‘This Is It, my body is never going to be the same again, but simultaneously and defiantly thinking – “Okay cancer, you have to leave me forever now!”

On the morning of the surgery I said to a very dear friend, “You watch, one year from today, I am going to be saying “WOW, it’s a year ago and look at me now”!

The surgery went smoothly, followed by the “stretching” procedure in preparation for the reconstruction. The few weeks of the stretching process were very uncomfortable and my “breasts” were awkwardly large and misshapen. I did have some pretty dark days but kept thinking how lucky we are. Those of us who are diagnosed today, are able to have reconstructive surgery either immediately or very soon following the mastectomy if we choose to do so.

My sister had to wait for the magical five years before she was given the reconstruction go-ahead.

And so to now?

Over 6 years since the reconstructive surgery. Am I changed? How do I feel? How do I look?

Of course I am different, you try very hard not to be but I guess any major happening in your life, positive or negative, exciting or traumatic, will on some level, change who you are and how you think.

On a physical level, I am so well. I look as I always did, can wear anything I choose and am running again and loving being on the road and in the fresh air doing all the “normal” stuff I have always enjoyed.

Emotionally I am pretty okay too. Inevitably, I am a little more reflective and introspective about life in general, but what I am, above all, is overwhelmingly aware of the love of the special people in my life. They are the ones that give you the tools to deal with anything.

To those of you who have never run out of care and patience and support, or closed your listening ears, you know who you are, and I thank you.

To Kim and Kirsty – we got through this together. I have been blessed to be able to manage it all, drawing on your support, your maturity, your humour and your unlimited acceptance of my erratic emotions, fears and tears.

Above all I have been blessed with your unconditional and unwavering love.

I guess in short, meeting the challenge of breast cancer has shown me pretty much every emotion in the spectrum, has taught me so much about attitudes and acceptance, barriers and blessings and has brought me into a medical world full of dedicated and wonderful people.

For this I am a richer person.

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