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Lindi’s Story

28 Aug 2018 by Krystal Barter

My name is Lindi. I am 45, a daughter, a sister, a wife and a mum.  Some may say my journey started almost 3 years ago, after testing conducted through the Genetic Clinic in Tasmania showed that I have a BRCA2 gene mutation.

I actually believe that my journey started when I was about 25 years of age, and expecting my first child.  On one fateful day during this year, my mother found a lump on her breast.  Testing showed that the lump was malignant.  This was devastating for my very close family – my dad, my sisters and my brother- and of course, especially for my Mum. It also affected our extended family – grandparents, aunts and uncles, and cousins.

In the beginning, Mum did not want to have any treatment but eventually, decided to go ahead with surgery, which was followed by chemotherapy and radiation, and  treatment to attempt to manage Lymphedema, which was a complication from having her lymph nodes removed (which still affects her today, 20 years later).  My long awaited baby boy was born in the middle of Mum’s treatments, and reminded us all of the blessings that life brings, and I am sure, gave Mum strength to continue on through treatments that gave her no quality of life for almost a whole year.

Finally, the treatments were over, and routine monitoring started, with clearances each year up until 5 years, when I think we all felt that it was ok to start surreptitiously breathing sighs of relief!  During this period, not a moment was wasted and mum had roped us all into helping her research her family tree, realising soon after her diagnosis that it seemed that many people from her paternal family had had breast cancers.

Our amazing mother taught herself to use a computer, navigate the internet and eventually, wrote a book.  Having never obtained her licence, we were all charged with chauffeuring her around the state to investigate family tree business, track people down, search for graves, obtain photographs and “paperwork”.  We knew that there was a high percentage of people in this family line who had been affected by breast and ovarian cancers, so at this point in time, we assumed that our risk was due to family history.  We had never heard of BRCA1 and BRCA2 gene mutations.

In 2015, my youngest sister, then aged around 37 years, was diagnosed with a melanoma on her back.  After disclosing her family history, her surgeon recommended genetic testing.  Mum was tested and tested positive to a BRCA2 gene mutation.  My sister also tested positive to the gene mutation.  On the day she got her results, I went with her and ended up being tested myself.

Until this point, I had been adamant that I did not want to have testing- believing that this could change my life in ways that I wasn’t prepared for it to change.

I was a single mother to my two sons and in a relationship with a beautiful man, whom I knew that I would one day marry.  Soon after meeting Ian, his previous partner, who had been battling cancer for a long period of time, had passed away.

My appointment to receive my test results was cancelled due to staff illness at the genetic clinic, and I was unable to get another appointment for 4 – 6 weeks, due to my own commitments.  I asked if I could get my results over the phone and it was suggested to me that I attend an appointment in Hobart, over 2 hours drive from where I lived. I took a day off work, without telling anyone, and when the day came, I got up and got ready as if I was going to work, and drove to Hobart.

I sat in a small room and listened to someone reading out my results, but it felt like I was listening a radio.  I was referred to surgeons to discuss my options and left the clinic, in a state that I can only describe as detached or zombie-like.  I drove around for a while, and ended up sitting at the marina, a place that has a calming effect on me, to think, and decided that I would not tell anyone and would just go on pretending that I didn’t know my results.  This seemed like a good plan!  At the time, anyway.

I started the drive home.  Halfway up the highway, my partner called me, and asked where I was.  I couldn’t lie.  I told him.  And in telling him, I knew that I would do whatever the Surgeons recommended as my best option, because I knew then that there was no way that I could risk putting him and his son through another experience of the ravages of cancer, without doing everything I could to fight it.  I also knew that I did not want my own sons to experience what Ian’s son had experienced in watching his mother fight for her life, and then losing her.

The test results started a crazy whirlwind of appointments.   Each of the three surgeons I saw, recommended urgent action due to my age, history of skin cancers and the age of my mother at her first cancer diagnosis.  Another trip to Hobart for breast screening.  A further trip to Hobart in November 2015 to have my ovaries removed only weeks after getting my test results – a surgery that was supposed to be simple, but was complicated by significant scarring and Endometriosis, and my ovaries being a little difficult to find after having had a hysterectomy 12 years earlier.

In the middle of all of this, my other sister and my brother were tested and returned negative test results for the gene mutation.  I returned home and, to replace my lost ovaries, we adopted a little ginger kitten, whom I named Andaashay (the Hindu word for ovaries).   In the midst of my surgical menopause, my beautiful partner one day surprised me by suggesting that we shop for an engagement ring, and I started planning a New Year’s Eve Engagement Party.  My next surgery was scheduled for the beginning of February, giving me time to enjoy the horrors of hot flushes and night sweats, and my family to become accustomed to the fire breathing dragon that I could become at a moment’s notice.

We were all loving life for these few months.  In preparation for my mastectomy surgery, my then fiancé, took me to Bali for a week.  It was a lovely break from reality, however, my highlight memory of the trip was walking through the Jetstar terminal, a week away from my surgery, returning home to Launceston from Bali and Ian saying, “Well, this time next week it will be all over!”.  I turned to him and started screeching like a madwoman which I am sure everyone in the terminal thought I was, “How would you like it if it were you, and you were getting your testicles removed?”.  I don’t think to this day he has answered THAT question!

Prior to the surgery, we also arranged to have some professional photos taken – our photographer was so respectful, I truly value this experience as part of my journey and love the photos.  On the 8th February 2016, I worked half the day, knocked off at lunch time and walked to the local private hospital, ready to have my breasts removed – I am not actually sure that I was really ready though.  After discussion with my surgeons, I had agreed to double mastectomy and direct implants, under the muscle.  So, that’s what I got!

While I was waiting to go in, my Dad turned up unexpectedly, said he was just passing by and thought he would drop in to say hi…. As you do!  I realised that I wasn’t the only one feeling a little bit anxious.  Ian left to go back to work, dad left and I gowned up, looking all glamourous in my hospital gown, paper knickers and long socks.  I woke up several hours later looking like Dolly Parton.  Oh wow, I was hitting my emergency buzzer in panic, quick, get the Surgeons back, I am not sure what they have done, but these are not the right boobs!  I ordered normal, average size boobs, like my old ones… what on earth am I going to do with these things, they are like watermelons, I will never be able to carry them!

It was gently explained to me that you can expect a “little” swelling after the operation.  The next day, I surprised everyone and got myself up, showered and dressed, and put make up on.  I was a bit sore and sorry for myself, but otherwise ok.  My surgery happened on a Monday.  I had my drains removed on the Saturday and was discharged Saturday afternoon.  I was visited by a “breast care nurse” who explained to me that they were only really funded to provide support to people who actually have cancer, but did leave me with some really useful little cushions and bags for my drains.

I started asking what kind of supports were in place, but no-one seemed to know of anything, which was probably a motivation for me to get my life back to normal as quickly as possible.  I went back to work on the Monday, one week after my operation.  I was a Branch Manager, managing 4 sites for an employment services contract at the time.  Work days were really hard work for me for those first 2 to 3 weeks, but I somehow managed.  My pathology results came back, all clear, other than noting a puzzling issue of some black lymph nodes from under my left arm – which turned out to be tattoo ink which has pooled in the area following some large tattoo work that I have around that area.  I continued to recover

well, but experienced pain for a long time after the surgery, it was unclear if it was nerve pain or phantom pain, so I managed the best I could, with massage and heat and tried to

avoid using a lot of pain relief.

 

After 8 weeks I was cleared to drive, and had started a new job, which involved a lot of travel across the north of Tasmania, so being able to drive was good news.  In June 2

016, I eloped!  My husband and I were married in Sydney and then travelled to South Africa to honeymoon, after sharing our exciting news with our sons and family and friends.  My Mum continues to work tirelessly, spreading the word amongst family and has been instrumental in getting a large number of at risk extended family members to seek testing.  Both her and my sister have had their ovaries removed and continue breast monitoring.

After finding little local support, I started a Facebook support group for Australian women affected by BRCA gene mutations, and my local newspaper supported this with a very

prominent article featured on the front page.  The group has 134 members now, peer support is so important in recovery, and I am so grateful to the people who supported me.

I always encourage anyone I speak to, to make the choices that are right and best for you.

There are no right or wrong answers or choices, there should be no regrets, just the freedom to do as you choose and the freedom to review your choices at any time, if you need to!

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