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” http://www.nordiesatnoon.com/authors.html

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 – 10^th 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. 

During the course of Thursday and Friday we waited on calls and updates from a number of people as to their arrival times.  Sadly one of the Phyllodes Team was unable to make it as her father passed away.   Secondly another Phyllodes Team member was too ill to make the journey.  And I’m quite sure there were many others unable to make the journey or for other reasons to miss out on such a wonderful conference.  BUT Jen, an old partying friend of mine from my London days was, on Thursday, told her flights were cancelled from New York City due to snow.  Her hubby was then going to drive her on Friday to Newark airport (a mere 10 hour round trip).  But on the way to Newark they discovered that all flights were cancelled from there too.  I think he knew just how important this trip was for Jen (and selfishly for me too) and simply said ‘well that’s it, we’re driving to Atlanta’… and he did – 996 miles each way!  Jen too has breast cancer and has undergone extensive surgeries, chemotherapy and reconstruction and like so many of us young women has been hit hard by the whys and whats and wheres of this dreadful disease.  Personally for me, it was great to spend time with Jen (although next time we’ll use a better reason) and also something so simple – to have someone with me at the conference who knew me BC (before cancer) whereas everyone else knew mebecause of the cancer.

So at 2am there was a little scratching at the hotel door and another of my oldest bezzie mates was waiting there –  Hug time!  After a quick catch up we both fell asleep ready for our busy day ahead – Saturday is the longest and fullest programme of events and we were both eager to attend as much as possible.

8am – Registering and Lei’ing Jen – After completing the registration formalities and ensuring that Jen had the correct Lei, we wandered through to the networking area, grabbing a quick breakfast bite and introducing Jen to my lovely Phyllodes Team.  It was truly wonderful to have such a welcoming group and our group continued to welcome new friends into it all weekend.

8.30 – Welcome and Opening Remarks – Three speakers from Living Beyond Breast Cancer, Susan G Komen for the Cure and Young Survival Coalition took to the stand to welcome all participants and provide some insight into the weekend ahead, facts and figures about the conference.  This was the 10^th year that the conference has been held and the numbers get bigger every year.  It also truly felt that the conference content was, in part, driven by the changing needs of the participants and ideas given to the organisers by the participants.

8.50 & 10.45 – Marking the Milestone : Sharing a Conference Story – The main seminars had small intervals where short stories were shared by survivors, predominantly about their journey but in some cases starting with the loss of sisters or mothers.  These stories were enlightening and real.  They were also a source of comfort and heartbreak, laughter and tears but always positive and motivational.

9am – Plenary Session One: Medical Update for Young Women – Julie R Gralow, MD

Julie presented to us on facts, figures, clinical trials, prognosis, improvements in the health service and soooo much more.  Although a tough presentation packed with information about breast cancer (not Phyllodes) I felt better educated and more assured that so much is being done to fight this disease.  All the time the odds are improving and the critical time for any recurrence or illness being pushed further away.  Technology is assisting in earlier diagnosis and good drug testing and better medical practices making surgery and treatment easier and better for the patient.

Below are a few links to some of the resulting clinical trials and references to information that is still referred to.  In particular in the US breast cancer patients are tested for dx21 recurrance assay (although not in the UK, as far as I’m aware).  The information also advised, what we probably already knew, about a low fat diet, weight loss and healthy living assisting in reducing any further recurrence.  In addition reference to increasing your vitamin D intake and ensuring that you take some level of physical activity after diagnosis.

The Oncotype DX Assay Process

Survival analyses from the Women’s Intervention Nutrition Study (WINS) evaluating dietary fat reduction and breast cancer outcome

Frequency of vitamin D (Vit D) deficiency at breast cancer (BC) diagnosis and association with risk of distant recurrence and death in a prospective cohort study of T1-3, N0-1, M0 BC

Physical activity and survival after breast cancer diagnosis.

10:50 – Plenary Session Two : Young Women with Breast Cancer : Living Fully is the Best Revenge – Julia H Rowland

Julia asked questions in her presentation and then when I thought there were no answers, just questions, she said more and my answers fell into my head.

Cancer Care for the whole patient – Institute of medicine of the National Academics

20-30% of women treated for breast cancer have depressive symptoms within 5 years post treatment.  It’s not unusual to feel loss/depressed quite some time after others may feel it’s all over.

There has always been a belief that there is a link between stress and cancer.. so try some of the below to manage your stress:

• Yoga
• Relaxation training
• Breathing techniques
• Meditation
• Guided imagery
• Distraction techniques

Disease free does not mean you are free of the disease.  There is so much more to cancer than the surgeries and treatment. 

Persistent affects:

• Physical/medical
• Psychological
• Social
• Existential and spiritual issues

Late and delayed effects:

• Recurrence
• Cardiac

Planning for recovery is important… plan for it

For every day since your diagnosis, allow as many days to recovery.

Ask your oncologist/medical team to provide you with:

• Treatment summary
• Care plan (follow-up)
• Survivorship care plan

National Cancer Institute – Facing Forward, life after cancer treatment

How do you make sense of it?

• Find the benefit of any situation.
• Listen to your self.
• Laugh.

National Cancer Institute website pages which have an enormous amount of information for patients and survivors… http://survivorship.cancer.gov

What are my dates?  Count your survivor date from the date of your diagnosis.

If you ever wondered why this disease affects some people or need a reason to believe that everything happens for a reason, I think back to when I was first diagnosed and when I first had surgery, lots of friends and colleagues justified it to me by say that things like this only happen to those of us strong enough to take it, I never really understood what that meant and sometimes felt quite sad that strong people would have to suffer more than anyone else… however…

“Women are like teabags, you never know how strong they are until you put them in hot water” Eleanor Roosevelt

My word, I’ve been in hot water and I’m feeling strong… bring me a cup of builders tea!

12.15 – Lunch and Learn.  Introduction by Marcia Stein, Young Survival Coalition.

Taking Your Voice to the Next Level – Congresswoman Debbie Wasserman Schultz.   Wow what a totally inspriration and motivational lady.  I can so see why she made it in politics and gets things done.  We were told of new and changing laws in the US relating to sickness, financial aspects and care.  We also heard Congresswoman Wasserman Schultz’s own journey with breast cancer and how she kept her diagnosis quiet from Congress so that she would be taken seriously as a politician whilst she changed the rules.. and wow she’s done that and has so much more in the pipeline.  Gosh if you’re reading this from the US and want changes or want to know what/who to support – this is your lady!  (and I don’t even vote!).

And the main bill she’s involved in is The Early Act.

1.45 – Workshop Session Two – Your New Normal: Navigating Your Emotions Julia H Rowland.

There was lots within this workshop but for me, I found I came away with another question answered. 

The person you were has gone.  Acknowledge it and find your new normal.

What this really meant to me is that I, like so many others, have wondered when my life is going to go back to normal.  Why I can’t suddenly remember what it was like before cancer.  Why my outlook on life has changed.  But the answer is simple and staring me in the face – nothing can be the same when you are made to consider the end of life.   Once that reality is faced, you can start planning a future – it may be different, every day may be brighter or more special because you’d never thought that you might not live it until cancer; you can use every experience for good and you can look on trivial problems and wonder why before they would have worried you.  Remember you don’t need to sweat the small stuff anymore!   You can be positive about one thing – you’re stronger than you thought, you can smile and cherish life, love and your surroundings and you can bring sunshine to others.

4.30 – Workshop Session Three – Mindfulness Meditation – Michael J. Baime, MD  The Penn Program of Mindfullness

Mind over Cancer

Stress Management and Survival Anderson BL   (Psychologic Intervention Improves Survival for Breast Cancer Patients: A Randomized Clinical TrialAndersen BL, Yang H-C, Farrar WB, et al (Ohio State Univ, Columbus) Cancer 113:3450-3458, 2008§)

Dr Baime firstly talked to us about the possible links between stress and cancer and demonstrated using data from previous trials how he believes there is a link and that we can assist in our health plans by managing or reducing our stress levels.  He suggested many practical things that we should check/change such as ‘Do you have anyone you can rely on in your social network?’  Fix any gaps in your social network and help to reduce stress.  This is not only when times are difficult but at all times.  Are you able to ask for help when you need a small favour as well as a big favour?  Remember that all the little things add up, so help others and let others help you.

He reminded us that the body and mind work together and that we should consider them both as a whole being.  We often have a tendency to separate our thoughts from our actions but in reality they have a bearing on one another and should be managed as one.

Stress however can enhance function ie when you’re under pressure to get a task finished in time, the motivation of the looming deadline can enable you to finish the task.  However stress can also reduce function ie you don’t take time to consider your options and rush in to do something quickly or forget vital pieces of information because your stressed.

Stress and its management

Event **********CRASH********** Reaction

Often stress will increase the size of the crash in the above situation, but what we really need to do is create some space between the actions and pause.

Event ***S***P***A***C***E*** Reaction

He then went on to explain the importance of breathing, taking time for ourselves and taught us some simple meditation exercises which allowed us to relax. 

I can truly say that Trish and I floated out of this workshop!

6.00pm – Jen and I escaped the conference and headed out for dinner with Paul and Sue.  Atlanta may have been confused by our little band of people as we’d not all been together for 18 years and all had English accents!  We had a fab dinner in a little restaurant … I love the style of food in Atlanta, fresh, good food with a spicy southern twist!

9.00pm – Jen and I rejoined the Conference and Team Phyllodes for the 10^th Anniversary Bash in the grand ballroom.  We stayed a while but were flagging fast, a full day of a lot of emotions, giggles and enthusiasm and snuck off to bed at about 11pm… although some were seen singing karaoke at 5am in town!!! J

What struck me more than anything in the talks and workshops today and with the survivors I’ve met so far, is that we’re all positive and we all know how to look at our situation and find it funny.  You wonder how but each and every person has a story about their cancer and you laugh with them… really laugh.  I know the NHS are running pilot schemes about the advantages of laughter therapy and I also know that if the NHS’s decision makers spent a few minutes looking around and listening to those attending and speaking at the conference, they would truly truly find the investment in this program.  So yes, finally I do get the joke my ex-colleague posted whilst I was having surgery on my right boob – “I do feel like a right tit”!