Joanne’s Story

16 Sep 2014 by Krystal Barter
Joanne’s Story

My name is Joanne and this is my story.

About ten years ago, my mother was diagnosed with breast cancer. She was in her early 50′s at the time, and it was a scheduled mammogram when they discovered a lump. Following her diagnosis, the procedure consisted of a lumpectomy followed by chemotherapy treatment then radiation treatment. All was pretty hunky-dory after her treatment.

Almost 5 years later, after a routine blood test mum was clear of breast cancer. Then she started to notice that every now and then her typing at work wasn’t making sense. What she was typing, and what was on the screen just wasn’t quite right. She didn’t think anything of it until she started to notice some problems with her driving. She realised that she was having a few cognitive issues. Then she collapsed.

I clearly remember it was very early on a Tuesday morning, when my dad called and told us that she had been diagnosed with brain cancer. It was a rare primary cancer. My fiancée at the time and I quickly packed an overnight bag. We lived two hours away. I cried hysterically and then I was completely numb!! And then I was hysterical the entire car ride. I just needed to get to the hospital.

We were first told that it was inoperable, yet later they confirmed that they could operate. They operated to remove the cancer, but unfortunately within days it started to come back. Mum never asked how long she had. We were told by the doctors that it would probably be a couple of months, but we never told her this. My mum never asked. So we never spoke about it. Within two weeks, my mum slipped into a comma.

I was born in South Africa and we emigrated to Australia in 1984. My mums best friend, whom we call Doll got here as soon as she could. They had been best friends since the first day of primary school. They were like sisters and their friendship is honestly something you can not put into words. Thank god Doll got to see her darling before she was in a comma. Doll spent every night sleeping on a make shift bed. As did most of us. There was Doll, my dad, myself and my two sisters. All on doonas and sleeping bags in quite a small room. My dad did not want mum transferred to palliative care. We had a rule. No talking of dying and crying out loud whilst in the room. Not until the last three days. We had no idea what mum could hear. My dad and Doll took us down memory lane. Laughter has always been a huge part of our family dynamic. Some of the stories had us laughing so much. You know those laughs where tears are streaming down your face and your cheeks and belly ache. I hope my mum was able to hear. Two weeks later my mum passed away. It ended up being one of the worst brain cancers you can get. It would have been better if it was a secondary cancer, but it wasn’t to be.

When mum passed away my entire world fell apart. Mum was not just my mum but my best friend, a shoulder to cry on, my strength and my cheer squad. And boy could we have a laugh together. My Mum was the backbone of the family and one of the kindest most honest and genuine people you could ever wish to meet. A part of me died that day. There is not a day that goes by that she is not in my thoughts. Seven years on I still have moments when I cry a lot. And I have picked up the phone to call her. We spoke at least once a day. Often up to six. I hate you cancer. Hate is a very strong word but I hate you. You took my mum away!!!!!!

Eight months latter I married the love of my life and the person that got me through my darkest days. It was a magical day but very bitter sweet and so life went on. I had always been vigilant with breast screening, mostly ultrasounds as I was under 40 and they are better for picking up changes in younger breasts as the tissue is denser.

About three years after my mum’s passing (by the way my mum’s name is Helene) my younger sister felt a lump in one of her breasts. It turned out to be cancer, oh no not again!!!! Her breast surgeon thought because of her age, 37 and the type of cancer that she had which was triple negative breast cancer and that we are Ashkenazi Jews that it was very likely hereditary based. A blood test was fast tracked and my sister tested positive for the Braca gene mutation. They had my mum’s pathology on file and that was tested as well, she too had the Braca1 gene mutation.

We were then able to look back and reflect and see that my Mothers, aunties had died of breast cancer. They were older and no thought was ever given to it. We emigrated from South Africa when I was 14, so other generations of family members getting breast cancer were not heard of or considered anything to worry about. I wish my Mum’s surgeon, who was wonderful, had asked questions about my mum’s side of the families breast cancer history.

My sister Natalie went through chemo. She had a lot of help, love and support from work, friends and family, but I have to take my hat off to her as she went through it all as a single mum. My niece was about 14 at the time and she wanted her life to remain as normal as possible. Because Natalie carried the Braca1 gene mutation it was strongly recommended that she have a double mastectomy. She had the op with reconstruction and all was looking good.

At a routine appointment with her surgeon a lump under her arm was felt. It turned out that she had cancer in about 6 lymph nodes. Her sentinel node biopsy was clear. In 99% of cases if that node is clear so are the others. I remember yelling NO, has Nat not already been through enough. She had to endure more chemo followed by radiation. Today she is doing really well. Her strength has totally inspired me.

Four years later I finally decided to get the test. After literally having a nervous breakdown at my last two mammograms I decided I needed to know. They wanted me to have counselling but I had already had years to think about it and having struggled and beaten anorexia, I was so over counselling. 6 weeks later my wonderfully supportive husband and I went back for the results. I was sure that I did not have the gene fault. Well I was wrong. My hubby and I held each other and cried. I clearly remember saying “What did I ever do to deserve this?” When the shock wore off, we started to put into place our plan. We spoke about it on the way home. I had already decided if I was Braca1 positive that I would be going down the path of preventative surgery as I felt screening to stressful. I did not want to catch it early. I did not want to get breast cancer at all!! And I did not want to endure chemo. I had seen first hand what it does. I support the decision other women may choose, to go down the route of screening. Our journeys, age and circumstances are all different.

I met with my breast surgeon Dr David Speakman who has the most beautiful bed side manner. He had my mum and sisters pathology on file. I was told I had a 80% to 90% of chance of getting breast cancer and about a 50 to 60% chance of getting ovarian cancer. I felt like I was living with ticking time bombs. I wanted them gone. With the full support of my husband I had a prophylactic double mastectomy on the 28th of March 2014. I had a wonderful medical team behind me and the love and support from family and friends. The op was a lot bigger and harder than I expected but I would not change my decision for anything. I no longer feel like I am walking around with ticking time bombs. I can grow old with my husband. He has been my rock, counsellor, cleaner, cook and nurse.

My operation has not gone smoothly. Eleven months on, I still have my tissue expanders and they are very uncomfortable. Due to an open wound that only healed 3 weeks ago. The skin is too thin for my exchange surgery. I am hopeful in two and a half months time when I see my plastic surgeon that I get the green light. My husband and have got through this with humour. He changes my bandages. All three layers of them, every two days. He has turned out to be a very good dressings nurse. I am blessed. Still absolutely no regrets.

In August four months after my mastectomy I had my tubes and ovaries removed. There is still no reliable early screening for ovarian cancer, which is why they call it the silent killer!!

I could never have done any of this this without the support and incredible love from my husband. Thank you. You are my world, my light, my everything. Thank you to my family, whom I love so very much, Georgie, my best friend who has gone above and beyond and continues to do so. Thank you my beautiful for everything. And a big thank you to Krystal Barter who set up an incredible charity that provides and advocates for women whom have the Braca gene mutation, or are at high risk of getting breast and ovarian cancer. The advice support and love I have received from the Pink Hope Community got me through some difficult days, thank you ladies. I only found out about Pink Hope four weeks after my mastectomy. I wish I had found you earlier. You have been my life line. The Bright Pink Lipstick Day campaign last year enabled me to have a discussion with my niece. She was 18 at the time. She said she will get the test to see if she has Braca1. But I think and hope she waits until she has finished her degree. She just turned 19 and is travelling to Europe at the end of the year. Thank you Krystal for teaching me to advocate your catch phrase “Knowledge is power”.

As much as I hate cancer and think my mum was taken away to soon at 61 I am so grateful I got to have an incredible childhood devoid of cancer. I had my mum in my life for 38 years, a lot longer than many other women including a cousin who passed away from breast cancer at 40 years young! She left two young children that will have to grow up without a mother.



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