Beauty in an Unlikely Place- Fannie Remembers Her Mother’s Breast Cancer Journey

Fannie learned some very powerful lessons from her mother through her breast cancer battles. She learned about self awareness, how to advocate and how she chooses to live despite living with LFS.  Thank you Fannie for sharing your memories of your mother and her strength with us.

 

My mom never knew she had Li-Fraumeni Syndrome. I was the first one to get genetic testing done.

fannie-lemay-mom-fish-copy

Fannie’s mom. One of her favorite pictures of how she lived.

My mom died of breast cancer when I was 21 years old; she was 45. She fought a great 10 year battle. Four times she had breast cancer. She just thought she was the unluckiest person in the world. But then again her family was almost all gone, killed by different cancers. All pretty young too.

 

AWARENESS:  Know Your Body

My mom always said it was important to know your body. She touched herself a lot(not in a weird way) and encouraged us to do the same. So when she felt a little lump in her left breast, she knew it hadn’t been there for a long time. She got worried and off to the doctor she went. I’m not sure how diagnosis worked back then, I think now doctors are way more aware that breast cancer can hit you pretty much at any age. Her doctor simply told her not to worry about it, that it was probably calcifications and to come and see him in six months.

ADVOCACY: Knowing What is Right for You

That doctor had no idea what he was getting himself into. My mom wanted a biopsy and she wanted it ASAP. The poor doctor started to argue with her that it was really overkill and that she should wait. My mom told him in no uncertain terms that she would handcuff herself to his desk and call the media if he didn’t arrange the biopsy right then and there. The doctor finally agreed and scheduled the biopsy with the proper department.  That’s how my mom discovered for the first time she had breast cancer.

fannie-lemay-mom-scarf-copy

Sadly, I remember very little about my mom’s journey through her illness. I was young. I didn’t grasp what cancer could do. After all, breast cancer was an “easy” cancer, right? That’s what they told us anyway. I was also out of the house for her last two breast cancers, the harder ones. I remember one thing about my mom’s fight with cancer: her self- advocacy.

 

LIVING: Knowing How You Choose to Live

Did those six months change anything? We’ll never know. I like to think that her tenacity to get the biopsy allowed her to see her 5 year old daughter grow to the age of 15. Mostly, I think it allowed her to start her Li-Fraumeni journey with confidence and a sense of power over what was happening to her. Cancer can be so scary, being confident and self aware can greatly help one heal. My mom cried very little during her fight against cancer. I like to think that it was because she felt strong and at peace with what was happening to her.

After 10 years of off and on battle, my mom decided she was done with all of it: the chemo, the doctors, and the hurting. She finished her journey like she had started it-in control. She made the transition beautiful for us. She found an amazing hospice house where all the nurses and doctors could be qualified as angels. And she went, pretty peacefully. She left me, the only heir of her mutation with the strength to fight for what I want and the power to not let cancer rule my life. She was happy, even in turmoil. I wish to be happy too.

 


A Tribute to Karly-

On February 14, the LFS community lost one of our family. Karly Hurst was well known within the LFS support group for her positive attitude and her spunk.   Her sister Vicki wrote me about her service, “it was a lovely send off, a white carriage with white horses, friends read stories about her in church and I read a letter she had written for her funeral. We released white doves at the burial and later released 35 balloons, one for each year of her life.” Vicki graciously shared with us some of Karly’s words from her letter.

Karly Hurst
Enjoy the little things as they will bring you so much more happiness. Don’t 
 
worry about what other people are doing, just enjoy your life. Life is a gift and 
 
one day it will be gone, so start living life to the full and do what makes you 
 
happy.
 
Keep me in your memories and keep smiling. 
 
– Karly Hurst January 2, 1980- February 14, 2015
 
 

Since we are spread all over the globe and could not make her service, several members of the support group wanted to share their memories of Karly. She helped so many of us and she will be missed.

Karly and I began messaging privately after I was diagnosed with breast cancer mets. We were both in our 30’s facing this particular challenge and trying to stay positive. As a typical side effect of chemo- insomnia took hold- I would see her online and we would chat about other side effects, quality of life and what we could do to try and keep the cancer from growing. Then we talked about the weather and how excited she was to get to be her sister’s birthing partner. She often said how much her niece made her laugh and how much she loved children. We talked about her dates and how difficult it was to even think about a relationship with LFS.  Mostly we had very normal conversations about very abnormal things. She appreciated the finer things in life, family, friends, a quite afternoon in the garden with the sun on her face. I will miss our nighttime chats and will always be grateful that our internet paths crossed and I got to know her, she was an amazing young lady. -Jen

Karly was the first mutant I spoke to in the UK meeting through the LFS group. We just clicked. Similar ages, different stories but lots of similar experiences, feelings and frustrations.  Our sense of humour, sharing the ups and downs of the NHS cancer services, drug trials and looking into other non conventional methods were how our friendship began. But Karly was more than just a person that I spoke to about our shared connection – LFS – she was my friend. 
 
We often chatted about trying to meet up. Our first try was a communication nightmare when she came up to Scotland and sadly it didn’t happen but we never gave up trying. We’re both pretty stubborn in a positive way. She was online for evening and night chats when I was at rock bottom and vice versa. We did research for each other – I remember getting travel insurance info for her from my local Maggie’s Cancer Caring Centre as she wanted to cruise and they had heebie jeebies they thought it was for me! But that was what  I loved most about Karly. Was that we could both dream together about separate things and neither of us would tell each other it was ridiculous or unachievable. Humour and hilarious conversations often took place but so did deep, sad and often emotional ones. The ones only someone in a similar position could ever start to understand. I’ll miss her loads and my only regret is we never had the chance to meet in person. – Row
 
Karly and I met online through our mutant (LFS) FB group. She was always so positive and supportive to everyone there. I had many late night FB chats with her. Maybe it’s because of us both having had breast cancer young, our shared crappy genetics or that I was a night owl and was up to chat, but whatever it was, I was glad for it. Karly was so fun, feisty and full of life. I never had the privilege of meeting her in person, but she still had an impact in my life and I am better for knowing her. She will always hold a place in my heart. -Trish
 
So sorry for the loss of your beautiful Karly. Her amazing heart and humour even reached as far away as New Zealand. Sadly we never got to meet when she came here, we were trying to get together but it wasn’t to be. I will be forever grateful for her willingness to help a stranger (me) by being available to my Genetic Counsellor, sharing some of her screening details for LFS so that I could attempt to access some too (I was told NZ has similar protocols to the UK). Long story short, I have now gotten the screening I need, and I am forever grateful. Karly thank you for making a difference to me, not only medically, but later as a friend too. You will be missed. RIP. -Samantha
 
I know that Karly had a generous heart and a terrific spirited soul. She touched and encouraged people that she didn’t ever have the opportunity to meet. -Ann
While Karly was sick, the Willow Foundation supported her with a trip to London and she gave back by donating funds she raised by shaving her head to them. The Willow Foundation fulfills special day wishes of seriously ill young adults. 

Donate to Willow Foundation or Leave Karly’s Family a message HERE!