In late 2003 after being referred to a geneticist by my GP for our strong family history of BC, I found out I was BRCA1 positive, as is my Mum and younger sister. I went through the entire counselling etc but still had the attitude “that I could be hit by a bus tomorrow” so why panic? My Breast Surgeon suggested that I look at having a bi-lateral mastectomy once I’m in my 40’s (which at 30 seemed a lifetime away) but until then I was to have close monitoring on a yearly basis which would include, mammogram, ultrasound (both breast and pelvic), pap smears and physical breast exams. So this is what I did.
After receiving my annual appointment reminder in March 2007 for my mammogram, I stuck it on the fridge and there it stayed while I was “busy” with life! Along came September and I finally made the appointment for the “routine” check. Before I got dressed they asked me to have another one as the radiologist wanted to get a better picture of one side. Even that didn’t alarm me. I was the epitome of flippant. As usual I got in the car with my films and peeked at the report. “All Clear!” Well, of course they were, they always were!
Off to see to my Breast Surgeon four days later for my follow up appointment, where he checks the films and does a physical exam. This particular day my husband was off work and asked if I wanted him to come with me. We decided that it was just “another” appointment and he could stay home and start getting dinner ready to save time!……
“Films are all clear Sam, jump on the table and let’s check them as well”.
While I’m undressing we’re discussing Britney Spears’ latest meltdown and whether she should keep her kids or not, and ironically whether she was pulling off the shaved head look? I put my left arm above my head and in some strange twist of events he placed his fingers directly onto a spot that felt bruised.
“Oooh, what’s that?” I said.
“Hmmm, might just check that closer” as he leant over and switched on the ultrasound.
There was something there. He did 2 needle biopsies on the spot and as I was getting dressed asked him if I should be worried?
“There’s a strong possibility that we’re looking at a cancer”. He said, I almost laughed…until I saw how serious his face was. Internally I went numb; externally I laughed it off, “Well that sucks!”..It was all that I could come up with! He said he would race the pathology through and call me the next day. Just like that?! He could’ve been talking about anything, it was so matter-of-fact.
I couldn’t focus on anything……I left and don’t remember leaving his office or how I got to my car? As soon as I was alone I rang my Mum, I couldn’t get it out quick enough. “They think I have cancer Mum”. I cried all the way home.
I pulled myself together before walking inside. As I was coming up the stairs, my husband asked me how I went…..there was silence……he could see I’d been crying.
I told him that I was waiting on a phone call the next day to find out if I had cancer or not!
He thought I was joking.
That night was surreal, we ate dinner, in silence, we watched TV, in silence, and we went to bed and just held each other, in silence.
The next day my sister came over to keep me “occupied” until the Dr rang. He was right on time. 1pm the phone rang, I remember someone telling me once to put it on speaker phone so if it wasn’t good news, someone was there to listen and take over. So I did, my sister and I sat together on the end of my bed listening for some good news, there wasn’t any.
“Sorry to say Sam, it’s a cancerous tumour which is very aggressive and we need to remove it immediately and start treatments”. My sister grabbed my hand and squeezed it, the tears tried to come, but instead I went into auto-pilot, asking questions and getting Dr’s names and numbers that I had to ring. Next I rang my husband and my Mum. They both arrived quickly and in tears.
I still hadn’t cried.
My eldest daughter (16 at the time) was home too, she wanted to stay with me, I told her and we hugged. I told her everything as it happened, sometimes I think it’s scarier for them not too know. My husband was devastated, he just kept saying, “I don’t want to lose you, I can’t lose you” Everyone around me was falling apart; meanwhile I folded the washing and waited on more phone calls from various Doctors rooms. What was their problem?
I spent the rest of that week having blood tests, a bone scan, x-rays, ultrasounds and finally Lymph node mapping for my Lumpectomy and Sentinel Node Biopsy. All the results were coming back clear but I felt I was just a passenger in someone else’s body. It was a blur. I had my partial mastectomy and Sentinel Node Biopsy, clear margins but node involvement!
Crap! I needed to go back and have an Axillary Clearance, so back to the hospital a week later and this time in for 4 days. I was an emotional mess this time, cried from morning til night (of course, not while any of my family were there!)
They took 13 nodes and I had one positive. The plan was 6 cycles of chemotherapy starting the week before Xmas….Merry bloody Xmas! Then once I’d recovered from that, a bi-lateral mastectomy and reconstruction. Gee, is that all?
Hubby and I decided to go away for a week to Queensland, just to breathe a bit. It didn’t work, it all followed me, not to mention my intensely sore arm! But we still had a nice time. Although we don’t normally shop for wigs on our holidays! We felt a lot closer that we had for a very long time.
I had all the normal testing before chemo started, so by the time the day came around I felt I was totally prepared and it was going to be a piece of cake…I dressed nicely, check...make up perfect, check....hair immaculately done, check, now let’s get this out of the way!…..Boy was I wrong! Let’s just say, I sucked at chemo!
I decided after my hair started to fall out, that I was going to shave it first! So New Years Day and a few skulled glasses of chardy, off it came. I was turning into a monster, no hair, the kilo’s were starting to pile on. I hated myself and the damn disease. I wanted my old self and my old life back! Where was my “normality”?
With so much help from my Mum and my sister, our family got through it. Now it’s been 2 years and 7 months since my last chemo and I’ve just passed my 3 year anniversary since my diagnosis. My body is starting to regain some sort of normality again, my hair is back, not to mention my eyebrows and lashes! It’s definitely not something that I’m “over”, but each stage of this journey gets further and further behind me, so that can only be a good thing.
On the 15th October 2008 I had my bi-lateral mastectomy and reconstruction. Another operation in September 2009. Now I’m heading in again to have a hysterectomy in January. Its not something that I’m looking forward too, but I just want it to ALL be behind me, I’m starting to wonder though, if that will EVER happen??
Since my diagnosis, my eldest daughter Emma has been tested for the BRCA1 gene mutation and and the results came back positive. We are trying to see the positive side, in that she can become pro-active and informed about her options for the future. At this point in time, she has decided that a prophylactic bi-lateral mastectomy and reconstruction will be her immediate future. All I can do is support her, love her and wish that my journey NEVER becomes hers.
There are few things that are positive about having had cancer, one is I don’t take anything for granted anymore, I treasure every minute I spend with my family, I don’t sweat the small stuff but mostly it’s all the wonderful women I’ve met that are going through their own battles and one special one that I’m so glad has become my very best friend.
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