Mum, Dad with my sisters and me (far left) Christmas 1997.
Welcome! I am writing this blog with a specific intent. If you are a person experiencing breast cancer or know someone who is then my aim is to share information to help you along through this journey.
I was diagnosed almost 8 months ago and am still in the midst of active treatment. My experiences have been a combination of amazing, wonderful, heartbreaking, physically intolerable and disappointing.
I am sharing my story in an honest, authentic and tell all manner so that you can glean from my experience what ay help you or your loved one. I have read so many stories my self and have found that each one has helped me in some way. Whether it be a symptom of chemo that helps me to feel normal, a tip to cope with treatment, an idea on what to ask your Doctors, or how to cope in general, I will share all that I have learned and experienced along this road.
My journey with breast cancer began 42 years ago when I was born. My Mum was diagnosed at 39 when I was a newborn breast feeding baby. She had a mastectomy, and carried on with her life. When I was about 7, she was in a car accident that ended up saving her life. Whilst Xrays were done to determine the extent of a suspected back injury they found extensive bone cancer in her spine.
Treatment recommenced. When I was 16, Mum found another lump in her remaining breast. Her GP told her not to worry! Several months later after she persisted in getting this assessed a second breast cancer was found and the second mastectomy was performed. Mum had radiation and was taking Tamoxifen as the tumours were hormone driven. She had already undergone a hysterectomy but had her ovaries removed also to protect her from the devastating effect of her hormones.
From then on, Mums bone cancer just kept on spreading until when I was in my twenties and spots were found on her liver and lungs. I remember a time when mum hurt her hip. She was such a stoic and strong woman she kept going but we all knew she was in pain. She told her doctor and said that she thought she had broken her hip. The doctor indignantly responded saying, “Oh no if you had broken your hip there is no way you would be walking.”
Mum persisted and eventually her hip was X-rayed a few weeks later. She indeed had a fractured hip and her hip was riddled with cancer. She ended up with 2 hip replacements to try and allow her to stay mobile.
On my 31st birthday, I was visiting with my son who was 18 months old when mum had a minor fall (It was more like a bump really). She was in excruciating pain immediately and we called the ambulance. She had snapped her thigh bone in two. Once again she was told the cancer had weakened the bone. Mum never walked again. She slowly succumb as the cancer spread to her brain. She passed away after a long 32 year battle on the 8th of August 2004.
When as a family of 4 daughters we reflected on Mums journey we noted how much she had to push for recognition and treatment. She would often tell her GP that she was concerned and was often told not to worry. She struggled with the idea that she was perceived and a whiner, so sometimes it took time to have the diagnosis confirmed and treatment commenced. Mum had radiation surgery and hormone treatment to deal with the cancer.
Mum was put on “Tamoxifen” each time she was diagnosed and was taken off it after a few years, which was the standard treatment protocol at the time. We noticed that within months of the Tamoxifen being stopped Mum would begin to experience weird symptoms and begin to push for recognition from her Doctor. The result was us as a group of daughters being petrified of both the disease and the treatment, as we helplessly watched our Mum get worse and worse.
Mum had one breast reconstructed and it was more like a butcher job than a reconstruction, poor love. She had so many scars from the surgeries, drains, hip replacements, hysterectomy and other medical procedures over a life time of health battles. She looked like a patchwork human,
When Mum was no longer able to live independently she moved in with my sister who lived closest to her. It made practical sense at the time as the two lived in the same country town, with the rest of use living away in both Sydney and Adelaide.
We agreed as a family we would care for Mum at home as she dreaded the idea of being sent to and aged care facility. We tried to share the burden amongst the 4 of us, but it really fell mostly on my second sister. She is very similar in temperament to my lovely mum and the two of them clashed. This was made more difficult as Mum got more unwell she became more frustrated and bitter. Mum lived for more than a year with my sister. This was such a hard time for everyone particularly Mum and my sister.
The more dependent Mum needed to be, the angrier she became and we were all subject to her wrath at times. We all understood why she was so frustrated; she had been the carer of everyone for so long, it was how she showed her love. She felt so useless and hated that she felt like a burden to her family. When Mum passed it was incredibly heartbreaking on so many levels and also a relief as she suffered so much. She died at my sisters home as she wished on the 8th of August 2004.
It was such a weird experience as she had been diagnosed with cancer so many times and fought it we didn’t think it would take her. So when it finally did take her life we were all shell shocked.
Within a year my sister 49, who had cared for her found a lump in her breast while doing a self exam one day. She had it checked out and it was also cancer – we could not believe it! It too was hormone driven and she had a mastectomy. She was recommended a similar regime to Mum. However, my sister did not want to follow the same path as mum so with such courage she said “no” to chemotherapy, radiation and tamoxifen and she decided to treat her cancer through complimentary therapies and nutrition.
My sister struggled more than she let us know. She was told by Doctors and fellow patients that she was crazy or stupid or reckless for not pursuing medical treatment. She questioned her decision but knew in her soul that it was right for her.
About 18 months later precancerous changes were identified in her remaining breast. She also struggle with the idea and fear that the cancer would come back, along with the unevenness of having only one breast that she had the other breast removed. That was 9 years ago without a recurrence. She has had a few slip ups with caring for herself, particularly when things get really stressful. But she has done amazingly well.
In November last year through a screening mammogram I was also diagnosed with breast cancer, I was 41. I had 2 tumours on my right breast that were also hormone driven. During surgery it was found that the cancer had travelled to my lymph so chemotherapy was recommended.
Unlike my sister I decided to take a combined approach with both medicine and complimentary medicine. With the full support of my entire family I too decided to have the second breast removed instead of waiting for my body to betray me.
One thing I have learned is that each person’s journey is so personal and individual. It is impossible to know how you will respond to the diagnosis of cancer until you are in that seat and you are being told “you have cancer.”
In that moment your life changes forever, things get really clear and really simple in an instant. You realise how much time you have wasted on the unimportant.
So my sincere intention is to share my experiences, what I have learned, what worked for me and what didn’t. I cope with humour so beware, some of the things my husband and I have laughed at may shock you, but you wither laugh or cry hey?
So stay tuned, read my blogs as they are posted, stay well, laugh lots and live in the moment – after all it is all we have!