Tracy’s story: A story of two sistersSeptember 23rd, 2015
My life changed dramatically with my breast cancer diagnosis. But thankfully, times had changed since my sister died of it.
My sister Gail died within two years of being diagnosed with breast cancer that spread to her brain. This was back in the late 90’s.
We came from a large family of seven children, and with a 10 year age difference between us, Gail was like a mother to me. My sister had such a good heart – she would go out of her way to help people she cared for. She was the type of person who always made you feel welcome, with food and drinks as soon as you were in the door. We were very close and I don’t ever recall a time when Gail wasn’t there for me.
Gail was just 45 when she found a lump in her breast. She was married with two daughters, both in their late teens. Being a busy mum, Gail put off seeing a doctor, so by the time her lump was checked it had progressed and become invasive. Although she commenced treatment, the options in 1997 didn’t fit her cancer. And the cancer spread to her brain. Gail’s daughters took care of her and she died at home with all of us there with her.
It was one of the hardest things I’ve ever had to deal with. I felt for my parents as they were elderly and it didn’t seem right for them to outlive their own child. As for Gail’s daughters, I can’t describe what they went through – so many special occasions in their lives that should have been shared with their mum.
I often think if the timing had been different, my sister would still be with us. I never understood why she delayed seeing a doctor? Why she put off treatments? I was determined to be different. I began screening in my forties, once a year. I practiced yoga. I didn’t drink alcohol and I was fit and healthy. It was December 2013, when I put off my mammogram until April, the next available appointment.
I’d just turned 50, and was really busy working from home. My husband Wayne and I were at the stage when our three boys were getting older. There was a sense that we’d done a lot of the hard work of getting them through school and we were beginning to take some time out together, going away for weekends and relaxing.
That’s when I started to feel more tired than usual. I put my symptoms down to pre-menopause and an hour nap in the afternoon soon became essential to keep me going later in the day. I had lost a little bit of weight as well, and I remember thinking ‘this doesn’t seem normal but weight loss?
I’ll take it!’ I looked and felt healthy, apart from being tired.
So when I went for my yearly mammogram in April, I was none the wiser. I’d had mammograms, ultrasounds and biopsies in the past and so I didn’t really worry when it happened again. However this time I picked up that something was wrong, and when I walked back out to the waiting room, I sat down next to Wayne and said ‘something isn’t right.‘
When I met with the doctor I was told I had breast cancer.
The news was devastating. But not in a ‘my life is over’ way. As crazy as it sounds it was more like, ‘I don’t need this, I’m too busy!’
The first thing I said to my doctor was…’Did I stuff up? I put off this scan. Did I fall into the same trap as my sister? Was my outcome going to be the same? Was I going to die? I was too busy to die!’
I was so full of different emotions – I didn’t want to be my sister. I didn’t want to think of the what-if’s. I especially didn’t want my boys to think about them either. I’d seen Gail’s family’s devastation and it’s something I didn’t want them to ever experience.
The doctor said ‘Tracy, we could have missed this in December. You are here NOW. This is treatable NOW.’ And so I resolved I wasn’t even going to allow myself to think about the what–if’s.
Having seen my sister put off treatment, I wanted to do this differently and hoped it would give me a different outcome.
I had a lumpectomy just two days later. Tests confirmed I had triple negative breast cancer which is a type of breast cancer that is often aggressive and difficult to treat. Gail was never told she had triple negative breast cancer – I don’t think there was much understanding of this in the 90’s. But because she was only in her 40’s and it was such a fast and aggressive cancer, my doctors agreed that it was more than likely to be the same.
I started chemotherapy just two weeks later. The cancer was fast moving and my treatment was long – 16 rounds of chemotherapy and 30 sessions of radiation that would last eight months.
My husband Wayne was so supportive and always there for me. We organised for friends to come with me for my chemo sessions but Wayne would always be there after it finished and have the next day at home to look after me.
Sometimes I would lie on our bed the morning of chemotherapy and say to my husband, ‘I can’t do this anymore.’ Blood tests and veins bursting, all sorts of things I’d never imagined. As well as losing the hair on my head, I lost my eye lashes and nose hair too, which meant nose bleeds and sore eyes became the norm.
When I thought about losing my hair I had visions of the wig my sister had to wear back in the 90’s. It was like a long haired guinea pig. I felt there was no way I could wear a wig. Knowing this, my friends encouraged me to get a ‘henna crown’ which is a temporary, safe form of body art for people with hair loss. My friends organised it all as a present for me, something I’ll never forget. It was just so special. The ‘crown’ helped me to embrace being bald, being present, which made it easy for me not to hide myself from people. Those friends who supported me in getting that done, made such a difference to how I felt about losing my hair and not being “me”. I held up my head with pride and enjoyed being different. It was a reminder that the hair on my head was the least important thing. Surviving was the most important.
Throughout it all, I didn’t lose my sense of humour or my hope that this treatment would work. I was determined not to go down the same path as my sister. I felt my prognosis was good. I was told my prognosis was good. I was okay as long as I didn’t let my mind project forward into what-if’s. I told myself ‘stop thinking so much, it’s going to be good.’ Things had to be different now.
I think the only times I really ‘lost it’ was when I thought of my family and how they were dealing with all my cancer. I had started writing a blog, and sometimes I would catch my husband reading it and crying. Not sobbing, just a few tears. Our youngest boy had a hard time with anger issues after I was diagnosed which was just not his nature. At the time it was stressful and hard to communicate to him that everything would be okay – that I would be okay, when he could see that I wasn’t.
After I finished chemotherapy I jumped straight into radiation therapy. I had 30 sessions and finished on Christmas Eve. Best present ever. I hated radiation. I can’t explain why, my doctor even used an amazing new product that prevented any major burns, so discomfort was minimal. It was just so mentally and physically draining in such a different way to chemotherapy.
After I finished everything, I really hit a bad spot. Many people don’t realise that even after your hair grows back you are still recovering. I was feeling really depressed, dealing with low energy levels on a day to day basis and menopausal symptoms that could turn my day on its head. My doctor had told me to allow as long for recovery as I had for treatment and I laughed sceptically. But she was right. It was gradual healing process. Treatment took about eight months and seven months post treatment I was only beginning to get back on track.
I had my first post cancer mammogram in April. When the doctor gave me the all clear, I was so happy I couldn’t help but cry. I looked over at my husband and he was crying too. I had never been happier. That news really helped to lift my spirits and although there are still ups and downs – it’s mostly up now.
Looking back I feel like I met things head on and was surprised at my own strength. If you’d asked me a few months after treatment it might have been a different answer, but I feel really positive about the future now.
Wayne and I will celebrate our 30th wedding anniversary this year, our youngest boy Angus has gotten over his anger issues and is much happier again, and we are planning to relax and spend more time together.
The improvement in breast cancer survival rates in the last two decades is huge. Research has done this. There is so much more information available, earlier diagnosis and less invasive surgery and treatment options.
There was also much greater recognition and knowledge of familial breast cancer, and especially triple negative breast cancer and the different treatments required for this type of breast cancer.
I am so thankful that things have changed, but my only regret is that Gail and her family weren’t able to benefit from those changes too.
The goal of the National Breast Cancer Foundation is worth striving for, zero deaths from breast cancer by 2030. I believe we should all be throwing everything at this, as breast cancer will touch every single one of us in some way.