If you are a young woman under 45 in New Zealand who has experienced a cancer diagnosis (and not just breast cancer either) there is a private Facebook group where a bunch of us have a safe place to question, vent and support each other.
Click on this link https://www.facebook.com/groups/YoungSurvivorsNZ/ to join.
Click on this link https://www.facebook.com/groups/YoungSurvivorsNZ/ to join.
Two months after my 30th birthday I had a biopsy
on a small lump I had found in my left breast whilst showering. Expecting to
hear the words cyst or fibro-adenoma my husband and I naively went into the
breast surgeon’s office to have our lives changed forever.
The surgeon told us
there were two cancerous lumps in my breast.
There was no way in the world I
had been expecting this. I had three children, I had the oldest one when I was
22 and I breastfed them all. There was no family history. I didn’t smoke, I
drank moderately and I ate healthy. Even my GP was sure it was a cyst, and to
my eternal gratitude referred me to the hospital anyway. Why me? Perhaps I’ll
never know, but to say we were shocked was an understatement.
And my way of
reacting?
I immediately burst into tears, and anything else the surgeon had to
say went by in a blur. I am sure that’s a pretty common reaction. My husband
and I both sat in a daze while the nurses and hospital staff gave us wads of
paper, booklets and forms, taking bloods and giving sympathetic and comforting
looks.
By the time we left the hospital hours had passed and our lives had
taken a much different path than we had been expecting.
My diagnosis was Stage 3 Lobular Carcinoma with Her2+ cells
and ER/PR- and within two weeks my two lumps had turned into 5, with the
original one I found in the shower now the size of a golf ball. This was
frightening and definitely turned the original plans for an immediate
reconstruction at surgery to a delayed reconstruction. I just wanted the breast
gone by that stage.
Support came flying in from everywhere. Meals were made;
children were babysat while we went to a dozen different appointments, prayers
went up, the traffic flow through our house was busy, our fruit basket had
never looked so good and we had never eaten as much lasagna in our life.
Everyone wanted to help, so much so it was almost overwhelming.
I have never
forgotten all the amazing goodwill and love we were showered with.
Eighteen weeks of chemotherapy comprising
of Taxotere, FEC (fluorouracil,epirubicin, cyclophosphamide), 26 rounds
of radiation and 52 weeks of Herceptin followed. As we fell into a pattern of hospital
visits, rest, seclusion and one harrowing febrile neutropenic episode the
support we had at the beginning fell away a little. I lost my hair, I gained
weight and I sometimes I met my one breasted, no hair, rather chubby self in
the mirror and cried and cried at the loss of who I thought I was. Who was this
sickly looking woman staring back at me? I didn’t recognise her. I sure as hell
didn’t want to be her. I started to feel so so alone.
The whole way through my treatment I kept this blog and it was
fantastic as a platform to keep people informed. I also wanted to log and be
very honest about how I was coping and feeling and because I felt so alone I
thought maybe it would send someone my way who could relate and tell me it was
all going to be okay. I wanted to know how other young mothers coped with young
children and treatment that took them away from being an active parent. How did
they cope with their children looking at them worried and afraid? What did you
say to your sweet 5 year old daughter when she asked when are you going to die?
How did you model to your daughters that beauty is on the inside when really
you were struggling yourself to find beauty? Where were those women? I reached
out and amazingly found one who was beautiful and wonderful enough to meet me
and being able to talk with her was like a breath of fresh air.
When I finished my treatment I was still stuck in that
place. I thought “how do I know if there are any other women out there like me
struggling with getting life back to normal?” “Will I ever feel normal?” “Why
can’t I think straight?” “Do you hate lasagna as much as I do?” “Are you sick
of people always commenting on your hair because they don’t know what else to
say?” “Am I too cynical now?”
Support groups for breast cancer are in place already and
run by the Breast Cancer Support Network. These are fabulous and full of really
lovely supportive women. One thing they didn’t have though was younger women. Why?
There are truthfully less of us, and perhaps we are not as flexible to take a
night out once a month if we have young children or full time jobs. Our age
group needed something more accessible so we can connect with other young women
from all around the country, particularly if we are in a minority.
Instead of moaning and lamenting the
lack of support and activity on various available forums I had a brain wave.
Why not start something? Starting a group on Facebook is easy and quick. All it
takes is a few moments and a few contacts and you have yourself a group. Most
people of my age group have a Facebook account and majority of them use it
fairly regularly. I used Facebook a lot during my treatment as a way to stay in
touch when I couldn’t go out and be social. So the platform is already there
and the numbers are already there. I got in touch with the few young women I
had communicated with by then and invited them to be involved, particularly one
amazing young woman from Nelson. Andrea Seymour is the other administrator for
the group and was last year was diagnosed with Hodgkins Lymphoma at the age of
21. And although we have never met we are both passionate about letting people
know the struggles and even joys from life journeying with cancer. We are both
keen for other young women to have a place to vent and find support.
This is how Young Survivors NZ was
born.
I am immensely proud of this project
and although it has only been going since June 2012 we currently have close to 50 members with more joining every week. We don't discriminate. Breast,
ovarian, Hodgkin’s lymphoma, leukemia, liver, lung, skin...the list goes on.
There's too much cancer out there for our liking that's for sure. We are a rag
tag group of beautiful people affected deeply by a cancer diagnosis. There
are women who had a diagnosis years ago, or are still in treatment, or perhaps
are repeating treatment. Women who had surgery, chemotherapy and radiation or
one of those or a combination. Women with children or are wondering if they can
still have children. Women with full time jobs, or struggling to get themselves
back into normal life.
The trend is showing this is meeting
a real need and we are excited to see where this takes us. And our mantra? We
are ALL survivors. Anyone who is still here is a survivor.
Websites that I found very helpful:
This series of videos by the Breast Cancer Aotearoa Coalition are excellent.
New Zealand Young Women with Breast Cancer forum on the Breast Cancer Network Australia site. When registering, use 3124 as your postcode.
There is also a charitable trust called Shocking Pink. It is a fantastic support website for young women journeying with breast cancer. They have a facebook page, support page which I love being part of and a website. Its a brilliant tool for supporting young women.
New Zealand Young Women with Breast Cancer forum on the Breast Cancer Network Australia site. When registering, use 3124 as your postcode.
There is also a charitable trust called Shocking Pink. It is a fantastic support website for young women journeying with breast cancer. They have a facebook page, support page which I love being part of and a website. Its a brilliant tool for supporting young women.
Blog sites I regularly read:
When I was first diagnosed I was overwhelmed with the information but I was more interested in finding blog sites of womens actual experiences and to be able to join the wonderful community of mothers and young women who are living with cancer or surviving life after cancer. This been so refreshing to be able to interact and support. These are my regular reads (some are not breast cancer blogs).
