breast cancer stuff

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 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.

If you know someone or are someone who has felt this way I'd love to hear from you. My passion is to talk to other women and let them know they're not alone. And now there's plenty of outlets for young women - from Young Survivors NZ to Shocking Pink (both closed groups for young women with cancer on Facebook) there is more and more support being offered.

Websites that I found very helpful:

Young Survival Coalition - particularly helpful site for younger women with breast cancer.
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.

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).