"Getting It Off My Chest" ~ Decision Made

Decision made

Having a mastectomy was the one thing that kept coming up every time I did my research. At first I was very apprehensive to even consider something like that but the more research I did and the more positive feedback and personal stories I read, the more it was clear to me that this was something, that at some point in my life I would do.

During my research regarding having a mastectomy is when i found Pink Hope Community, Pink Hope is Australia’s first community designed to inspire women to be proactive and vigilant with their breast and ovarian health, while providing a safe haven for high risk women to connect. Krystal Barter founded Pink Hope in 2009 after a long family history of breast cancer. Krystal was recovering from a preventive double mastectomy after changes were detected in her breast tissue after a routine mammogram at only 25. Pink Hope’s mission is to provide high risk women in Australia with knowledge and information to help each woman throughout their own individual journeys due to being high risk. They aim to reduce the occurrence of heredity breast and ovarian cancer through the known high risk population, through awareness, education and support. I read so many inspirational stories about woman in the community that have had this surgery, talked to a few of the lovely ladies and looked through a lot of photos. The more I read the more this was something I would want to do. At first I thought I would be too young and there is no way that the doctors would let me due to my age and due to the fact that I do not know if I have the mutation brca gene as mum’s results were inconclusive so testing me is not an option yet.

I received another appointment letter in the mail. I thought to myself Oh no what have they found,? what is wrong. Straight away I jumped to the worst possible situation, Breast cancer. Maybe they had missed something last time and now they have found something. Why would I need another appointment when my MRI isn’t due for another 6 months. The appointment day came and I was more worried then usual. I thought this had to be it. There is no way that this could be anything but bad news. Another quick appointment, when I handed my form in the nurse looked at me concerned and straight away got up to put my form in the pink box. She came back and said take a seat, it wont be long. It wont be long? I thought, normally they say it shouldn’t be too long. My mind was running a million miles a minute, too much was going around and around. Thinking about my reaction when she tells me they found something, thinking about my family. I could feel myself being so unsettled. After all the panic and fear, I was called in, sat down and asked to update my family history to the best of my knowledge. That was it. Again I felt a bit lost and unsure why they were all acting so concerned, or was it that I was taking every move, tone, look and body language the wrong way and making it into bad things when really they weren’t. After we updated my family history I decided to mention having preventive surgery. The doctor looked up and me and before she could say anything, I went on about all the research I did and all about Pink Hope. I told her a few ladies got surgery quite young, 23, 24, 25, 26 and I wanted to see if it was something I could do? She said with a very serious face and tone, yes that is very possible and would be a very good option for you. I was shocked, I really honestly expected her to say no I was too young, or no not until you are tested for the gene. I was very happy and felt straight away a bit of weight lifted off me.

She told me that I would have to see a psych to access me and make sure I am mentally ready for something like this and it was protocol that I see her. She told me she would make an appointment, the psych would call me and then I would come and see her. I left happy and ready.

I got home and told my husband that having this surgery is something I’m allowed to do and something that I want to do as it is the best option for me. As expected, my husband was supportive and said what ever you chose to do, ill be by your side. He thinks it’s the best option for me also because of my risk of getting breast cancer. He lived with mum and me while she went through her treatment and would rather I have the surgery then risk being that sick. I know he would cope a lot better looking after me during recovery then during treatment. I told my mum and a few family members & friends. At first Mum was hesitant, not because she didn’t agree but obviously because of how big of a decision this is and I’m sure she just wanted me to be sure. I explained everything to her, showed her photos and stories from some Pink Hope women. A few of my friends were shocked; some didn’t know what to say. Most of my friends know my family history and how I feel about cancer and my breasts. I’ve always hated my breasts, I remember noticing them when I was around 8 or 9 and one of my first thoughts was "I wonder if there is cancer in there”. Mum says I always wished for big boobs but I certainly wished too hard, because they are and always have been to be and for as long as I can remember they have been my enemy. For some part of my life, I liked my boobs, only because of the attention they got me from the boys in high school and I liked being able to dazzle them and get them to do what I wanted but now I look back and know that was just typical high school stupidity and that the “like” I had for my boobs soon stopped. I’ve never had that connection to my breasts like other women have. I hate the fact that they could deceive me & betray me which in turn could kill me. I look at it as my breasts are no longer needed nor wanting, they have done their job, and they have fed my babies. There is no more use for them, the only thing they can do now is turn on me, so why keep them?

So back onto the research I was, back on to the Pink Hope website and the facebook groups and back onto google.

I decided to sign up to Pink Hope and become an ambassador, speak to others, obtain more knowledge & raise awareness. The women involved in Pink Hope are so warm and welcoming. I felt like I fit right in. I decided to share my story Except I always thought to myself “am I worthy to be an ambassador when I don’t know if I carry a brca gene”? I always felt a bit out of place because I am high risk because of my family history, not because I am brca positive. Not saying that I am not Brca positive, My mum had been tested for brca genes during her diagnosis but her results came back inconclusive, which meant it’s not negative but the genes that were tested didn’t show a mutation. BRCA1 & BRCA2 are the two breast cancer genes that are currently tested for the mutation, they are currently researching the brca3 and 4 gene and unbelievably there are actually over 25 genes that link to breast cancer in some way. That is why my Mum’s results were inconclusive and not negative and that is also why some people test negative for brca1 and 2 but still get breast cancer. 

Another letter comes in the mail a few weeks later, it’s the appointment to see the psychologist Stephanie. Its for the 2^nd November 2012. As I read the appointment letter, I get butterflies. I wonder if she will think I am mentally stable enough to have this surgery? I wonder what she will think of my history? Will she dismiss the whole thing because of my age? Will I be that nervous that I come across unstable or scared? All these things were going around in my head. I have a problem with blababling when im nervous and I don’t make any sense, I wonder if that will happen. Over the next week I receive a phone call, its Stephanie! My heart starts pounding and my face is getting warm. I try to sound normal as we talk. She is just calling to confirm the appointment and let me know what to expect. She sounds so warm and humble and it instantly makes me feel comfortable. I hang up feeing confident. Im actually looking forward to my appointment with her now, she made me feel like we could have spoken on the phone for hours.

It’s the 2^nd of November and up until 2 hours before my appointment, I felt fine. Now Im nervous again and have all those stupid thoughts running through my head and I know I will stuff something up. Mum and my son Bailey comes with me to the hospital. I wanted mum to be there with me and so Bailey had to join us. He is normally well behaved with nanna and I have printed out some activities for him and nanna to do while im in my appointment. We get to the hospital and im really nervous that I feel a little bit sick, the lady at the counter looked at me like im a crazy person when I gave her my appointment letter (or maybe my mind was playing tricks again) but to me that’s the look I got. I sat down and waited. Bailey and Mum were starting to do the activities and for a few minutes I was in total bliss just watching them. I love the strong bond they have and sitting back watching them both gave me a very warm fuzzy feeling. I thought to myself that I could never risk letting either of them see me sick with cancer and I would do whatever I needed to. My name was called and I stood up, gave Bailey a kiss and told him I would be back soon and I cant wait to see all his work. As I looked over to the lady, I just assumed she was taking me to Stephanie, until she said Hi Emma, Im Stephanie. Her face didn’t suit her name but as we shook hands I instantly felt her warmth, the same warmth I felt over the phone. We sat in her office for just over an hour talking about things, she was writing things down as I was speaking but it didn’t feel like a interview as I thought it would. I was still nervous and a few times noticed I was blabbling so I would apologise. She told me that its natural to be nervous and that made me feel a little better. She asked me things about my family history with cancer and how it made me feel as a child and throughout my life, she asked me about life events that I had been through that have been a struggle and what I did to overcome them. She was very surprised with all that I had been through in my life, for my age and agreed that I was a lot more mature for my age and had been through a lot more than most people 20 years older then me. She said I had great problem solving skills and could handle certain things that would break most people. I felt amazed as she said all of that, and realized that I have been through a lot and that I am such a strong woman. Most of the time I had to be strong, there was no room to break down or be weak. I learnt how to be strong from my mum, she is the strongest woman I know. Not only has she been through hell, she is still such a beautiful, caring person. It amazes me that she still stands so strong, she is the glue in our family. I felt proud to be somewhat like my mum. I left that appointment feeling empowered and proud.