Last day of Conference and I want to max out on information

8am – Yoga – Yes you did read that right.. I was up and out and in a yoga class for an 8am start!  Along with about 50 other people from the Conference.  The little room was packed and as we stretched and posed we all became very close friends!  

9am – Quick shower and down to the exhibitors hall to grab a cup of coffee before the next workshop.  The other girls were leaving at 11am to fly back to their destinations  and headed out with Jen to get some breakfast.  Although some of the ladies were a little worse for wear and hadn’t yet made it out of bed after their 6am finish time in the karaoke bar.  You know some people might frown upon partying hard at the conference, but for a lot of attendees they can really let their hair down (or take off their wigs) and just be themselves, laugh at themselves, at our situation and be amongst friends.  That kinship is more important, sometimes, than anything else and the conference is a way to network with people who are travelling this journey with you.

10am – Workshop Session Four – Body Image: Breaking Through the Mirror – Lillie D Shockney, RN, BS, MAS

I don’t need to tell you why I wanted to attend this workshop!

Lillie Shockney was an awesome speaker, within minutes she had us all thinking, crying or laughing… or for some, all three and it just made sense… so forgive me if I repeat bits and pieces but I think it may help others too.  She is a breast cancer survivor herself but was involved as a breast cancer nurse before diagnosis.  She has many tales about people and situations that shock and then bring you into fits of laughter as she tells of prosthetics popping out on golf courses and board rooms.  I can understand why she is involved in so many educational projects in the US and overseas.

Lillie Shockney is also involved in a project in the Arabia regarding education and medicine for young women.  The average age of diagnosis is only 34 and usually death within one year of diagnosis.  Scary stuff and it’s no surprise that breast cancer is referred to as ‘Death Fate’.

How we see ourselves is often very different to how we perceive others see us.  Think about it some more…

When we hear those four little words “You have breast cancer”, we instantly are fearful. We’re fearful of losing our lives, of losing a breast (part of whole), of losing hair and also of losing our mate, of gaining weight, losing libido, depression, preoccupation of fear of recurrence and needing to find our ‘new normal’.  And it all happens so quickly.

She said that she urges women to seek solace in humour through the rough stuff.  To label the surgery ‘transformation surgery’ as it really is and does transform your body and mind. 

Celebrate that you go from being a breast cancer patient/victim to a breast cancer survivor.  Doesn’t that sound better?

Ms Shockney also mentioned that she’d known cases where survivors experienced pain or phantom limb sensation after surgery to remove the breast – but she said that with some survivors they’d been able to find a spot on the body that meant the sensation disappeared!

Redefine your intimacy, talk it all through with your partner and ensure that they are part of the process.  Often when we’re unable to be sexually close, simply holding hands conveys what you’re feeling.

Partners often become owner occupiers for a while…

Oh and if you’re having chemo, organise a little party with your closest friends and have a coming out party for your hair before you start.

I think for the most part, for me, this workshop smacked me in the face and told me not to worry about it all so much.  When I meet the right person, it won’t matter.  Should I need further surgery or treatment, learn to laugh at the little stuff and the big laughs will follow. Find humour in the hardest of times.  And rather than feeling that any change is a bad change, embrace the new chapter of my life and use the learnings.

11.45am – Don’t go – Sadly the time had come that some of Team Phyllodes had to head off to get flights home.  I rushed up to the lobby after the workshop to find them all there, long faces (and a few hangovers).  I was sooo sorry to see the first go, particularly Trish.  She was the first person who retrieved me from cyberspace when I was searching for answers and someone, anyone, to talk to.  The difference this made to me, my discovery, my recovery and now… I can’t put into words.  The relief to know that I wasn’t alone and I could ask questions and she quickly put a shout-out for other Phyllodes survivors to friend me and I really felt that having felt so alone I suddenly had sisters out there who could pick me up and lend me a shoulder to cry on when I needed it.  Since then I’ve tried hard to ensure that no one feels alone with this ‘rare’ illness – we’re not THAT rare (but we are of course, unique!)!  So having this opportunity to meet and hug Trish and some of the others from cyberspace was something I will cherish forever.

12.15 – Closing Plenary: Resigning as General Manager of the Universe: Taking Control of your Own Health and Life – Kim Carlos     

Kim opened her speech with words that resonated loudly with me:

“When you hear these four words “You have breast cancer”, you instantly feel alone.  But I’ve learnt that I’m NOT”

She told of her story, of how she now uses every experience and learning to ensure that at the very least the message to women AND men, gets round, check your breasts. Don’t leave it to chance, you are your own medic… and remember that ALL the people at the conference were told at some stage ‘don’t worry, you’re too young to have breast cancer’… ooooh how wrong they are!  In the UK we are lucky to get mammograms at 40, in the US they don’t get mammograms until they’re 50 and everyone at the conference was under 45 years of age! 

She went on to tell of her journey with her new friends, of times they laughed, times they cried and times that should probably be confined to the conference… but you can read about it in their book “Nordies’ at Noon”

Like so many of the speakers, survivors and hosts, Kim was keen to learn from her experiences and to use this for something better (and also to get away with a few things too) and Kim’s top 10 were:

10.  I could say NO to the things I didn’t want to do and not feel guilty.

9.   I could have a messy house and it was OK.

8.   It was easier to raise money for good causes… a bald head helps!

7.   No shaving, no razors, no waxing, no in-growing hairs etc.

6.   Had a tummy tuck as part of her reconstruction surgery.

5.   Got a new boob and a breast lift… for free!

4.   Meals bought to her by friends and family which meant no cooking.

3.   There was no such thing as a bad hair day.

2.   Anything that didn’t quite go right, she could blame on “chemo brain”.

1.   It made Kim realise the wonderful gift of life and made her cherish family, friends and life.

Kim’s recipe for survivorship

S – Support & Survivors and co-survivors.

U – Uncertainty that you will fill your life.

R – Resigning as general manager of the universe.  You don’t have to be in control.  You don’t have to be one that everyone comes to.  Take care of yourself and let others take care of the universe.  You can ask for help and you can accept the help given/offered.

V – Venture.  Take a risk.  Do something you’d otherwise never give a go.  You can never fail, just learn and experience.  You never regret something you did, just those things you didn’t do.

I – Information.  What do you do with all the information and learnings you’ve got from this experience.  Use them.  Empower yourself, do something with it, use it!  Become an advocate.  “Be an active participant in your care”.

V – Valuing each and every day.  (What are the things in YOUR life that you value?  Do them).

O – Optimism. 

R – Refusing to give up.  And SURVIVING and THRIVING.

12:45 – 10th Anniversary Cupcake Celebration and Closing Remarks from LBBC and YSC

As the Conference closed I was incredibly aware of the amount of information, companionship and warmth that I had gained from the weekend… Somehow I was going to be thankful for the cosy atmosphere of the BA flight home to think through what it’s meant to me.

1:30 – After more sad goodbyes in the lobby, Jen and I headed out into the chilly Atlanta sunshine and were whisked off to Sue’s house for an American brunch.  Yummy pancakes, bacon, strawberries, maple syrup, eggs etc.  Awesome meal and fun walk in the afternoon with Sue, Paul, Jen and Sue’s children before Paul drove me to the airport and my long flight home. 

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