Monday 29 February 2016

Raise your voice for Rare Disease Day

Feb 29th, the world recognizes Rare Disease Day. I am afflicted by a rare disease , ironically it is not so rare.



The Malignant sarcoma I had was even rarer and a complication of Neurofibromatosis NF.

Children's Tumour Foundation Australia is dedicated to providing support to individuals and families affected by neurofibromatosis (NF).

I borrowed a few words from John Huynh President NF Ontario ...

Neurofibromatosis feels like a dichotomy. It is considered a rare disease, yet it is the most common genetic disorder caused by a single gene. It affects 1 in 3,000 , yet is relatively unknown to the majority of people. Some individuals with NF may have serious complications, yet others with NF will live their lives without any complications at all.
Like a snowflake, each and every individual with NF is unique. Unique in how we look, unique in how we are affected by NF, unique in how we manage it. The unpredictability of NF and the wide spectrum of how it affects a person can sometimes create an atmosphere where NF is not talked about. Out of sight, out of mind is one way people deal with NF. While it is a coping mechanism for some, silence will also keep NF in the shadows.
At times the NF community may feel fragmented, but must remember that we all share something in common that is ingrained into our DNA, into our genes. It knows no borders; ethnicity, gender, or economic status. The commonality is Neurofibromatosis. Let’s continue to talk about NF and not be ashamed of it. Talking will help generate awareness and understanding of NF amongst ourselves and the public. As more people are aware, a greater push can be made for research so that one day a cure for Neurofibromatosis can be found.
Awareness starts with each and every one of us. Together we can all do our part.
Are you ready to join the conversation?
Sincerely,
John Huynh
President
NF Ontario
I'm still grappling with how NF affects me and have my whole life - I haven't let it stopped me yet , even though I've had many ups & downs, and health challenges.

Break the isolation of millions of patients and families around the world living with a rare disease.
I don't understand why it's so hard to raise our voices.
Stigma.
Stop the stigma of being different.
Step up to make a difference.

Don't wait for adventure to find you - make your own adventures !

PS : I am running in City to Surf in August to raise funds for research and support programs, provide information to families and friends, educators and health professionals, and assist those impacted to find help and friendship within the NF community.

I Must Confess


Wednesday 24 February 2016

Sydney Skinny ~ Dare you to go for a dip

Like many people who have experienced cancer (Breast Cancer [2012] , Sarcoma [2014] and Melanoma [2015] ) I've had a hard time figuring out how to present myself to the world post cancer, most significantly, since I straight up opted not to go through Breast reconstruction.

I struggle with body image, I have my whole life due to a genetic disorder Neurofibromatosis (NF1). NF causes lumps, bumps and tumours to grow on nerves, amongst other awful things (like rare malignant cancers and sarcoma)

Blindness in one eye caused a slight outward turn (ok weird one eye looks the other way when I talk to people) and then there is that frankenstein looking screw behind my right ear for the BAHA (bone anchored hearing aid)

Ugly.

Word.

I've never liked my photo taken. I've destroyed many because I didn't like the way I looked.

Delete is my favourite photo edit.

Losing my breasts was not a huge loss, I got to live.
I miss cleavage and nice fitting clothes.
I miss that feeling of removing my bra at the end of the day.NOT.

Cancer changed the way I look, think and feel.
Cancer did not make me less of woman or person.

My flat and fabulous chest is a badge of honour to me.
My scars (there are many) tell a story.
Long story.
I'm still processing the changes of menopause and feeling like a cranky creaky dis-jointed puppet.

How do I do it .
"You just learn to live with it"
I accept what cancer (s) and it's treatments have done to my body.
I don't have to like it. 

"Your point is ?"

I was just invited to join Team Nudie (best pun ever) - nothing to do with sponsored posts at all.

I entered as a dare to my inner critic - how could I say no when they rang today !
‪#‎bodyimage‬
‪#‎mcgrathfoundation‬ are doing it too
‪#‎yolo‬
‪#‎teamnudie‬


The SydneySkinny, an annual nude swim in Sydney that encourages the depletion of body stereotypes and loving the body you have. 

I'm so excited to be a part of something with such a great message , my body is far, far from perfect - let alone normal.


I have many scars from surgery and birth marks, lumps and bumps besides no breasts !
Stuff it ! 
I can do this. 
I'm more worried about not drowning.

Don't wait for adventure to find you - make your own adventures!

Sydney Skinny on Sunday 28th February – go team nudie!
It's not a race, thank goodness.


There will be no selfies.

Yes it was so cold in Tassie I needed a beanie last Friday and three layers of clothes.



Tuesday 23 February 2016

Wordless Wednesday : Almost a Marathon ~ Tasmania 4 Bridges Paddle




10 boats of 16 paddlers and a Sweep




 41 or so kms in 5hrs with a 45min morning tea and WC break. Still mindblowing we did it ! Many participants were in their 50-60-70's.

We rode the waves, paddled over 14000 strokes and finished full of pride and satisfaction.

 

These were photos taken by another lady - with permission to share.



spectacular views


Inlinkz


   

   

Wednesday 17 February 2016

Wordless Wednesday : Yellow Penguin Army

Cupid's Undie Run Team - we reached our team goal of $3000 - Go Team !
Cupid's Undie Run 2016 - Cupid’s Undie Run is where a little crazy meets a lot of charity. Tumours suck and we were there to fight them with hundreds of half-naked runners taking to the beach in celebration of their fundraising for the Children’s Tumour Foundation Australia!

Monday 15 February 2016

Handbag personality...

What's in your handbag ?

Some people say that you can tell a lot about a person by the contents of their bag. Tricky – because I rarely use a handbag. If I do I usually hide it under detritus in my car.

So 90% of the time I cart a TIMBUK2 back pack around with me. I don't really have a handbag collection anymore. It’s a throwback from years of carrying everything for twins. I was a packhorse.

Besides my wallet, I carry hearing aid batteries, spare undies, socks, Panadol (never when I need them) a small towel (but not last week when I showered at the gym and used my sweaty t-shirt to dry off). There was one or two in the car.

Right now covered in glitter from my fairy wings - true story.


I carry it with the excuse that I need it for paddling and the gym.

Somewhere in the depths which I can never find, due to multiple pockets, is my mobile phone, never in the same place. You think would I would learn. Of course, I know it’s in there somewhere - even if I ring my phone using the car to make sure.

Usually there are random spare gym clothes, a band-aid and loose change. Other pockets are littered with shopping receipts, a heavy steel drink bottle (I can never locate except I know it is there by weight) . A lead pencil and a sudoku book .

No lipstick, no perfume, no brush …short hair is wet and wear.

Today-  I also found an all weather proof/rainbird coat, a hat and a swim cap.
It will also fit a Lap top.

Neat , I earned this last year doing Cupid's Undie Run.
 
I wonder what this says about my personality?

That I live in a state of organised chaos !

Always on the go ... to dragon boat paddling , less so the gym of late, and prepared for every adventure?

What does your handbag tell you about your personality?

I Must Confess

 

Thursday 11 February 2016

Thursday Thirteen - A little inspiration

  1. I want this pin cushion thanks
    Tilly - her tutorial is here


  2. Cutest ,award winning heart warming animated video -
     
    The Present
    from Jacob Frey on Vimeo.
    reminds me of our three legged Cross Australian Silky Terrier ~ Toby.

  3. This post by Maxabella Loves on The Truth about Losing is GOLD. Closing the gap on winners and those who finish behind them.

  4. Fancy this !  sex education video from Norway shown on public television - I'll need it sooner than I think with 2 boys heading into double digits this year.
    Hilarious and brilliant.  Thanks Catherine Deveny 

  5. I just watched 'That Sugar Film' very enlightening ...have you seen it . Join Presto for a month's free trial and watch it. Come back and share your thoughts.

  6.  Kirsty @My Home Truths wrote this insightful post 6 Things I Wish Someone Told Me When I Became a Special Needs Parent

  7.  I did not write this but I am printing it out.

  8.  Cherry Heart Pies for Valentine's Day

  9.  



  10.  



  11.  I am $139.50 away from target of $1000. Thank you to those who have already donated - it is appreciated beyond measure.

  12.  Have you entered to win 2 nights in the $3500 Love Cave giveaway

  13. When I wrote my post the other mentioning "Bucket List" I had no idea the venue for Cupid's Undie Run was being held at The Bucket List ~ Bondi Beach.
  14.  https://undierunsyd2016.everydayhero.com/au/trish


February 14 is just days away ! As we inch closer to event day, now I'm sending a final push for support and donations to help me achieve  $1000 of $180,000 fundraising goal in support of the Children’s Tumour Foundation.



Raising $10,000 could go towards funding valuable research in the treatment of NF. Imagine if they raised $180,000 or more! Your efforts can help children like Chenoa, who was diagnosed with NF1 at 2 years old and has had to undergo a permanent tracheotomy to help her breathe because a large tumour has grown wrapped around her heart, left lung and major vessels. help raise funds for valuable research to help give adults and children like Chenoa hope for a better future.

So what are you waiting for? Let's reach that $180,000 goal!


Tuesday 9 February 2016

Wordless Wednesday ~ Love knows no bounds

Rain , hail and shine (yes these are our rings) Twenty six years 10:2:1990 !

He is even running along Bondi Beach in his undies on Valentine's Day !

https://undierunsyd2016.everydayhero.com/au/trish


 

Things that make my heart lighter



We are closer to our target today !

Cake ...though it makes my bottomline heavier. The Gluten free Orange & Almond #2 engagement cake

Beautiful Flower Bouquet from Flowers for Everyone
Flowers for Everyone offered to send me some flowers , I decided my future daughter -in-law would love them instead. Win :) Wink.

We didn't hear the doorbell with the noise of the celebrations , so it was wonderful they left them still.
In exchange for the flowers I'm giving a shout out to their fabulous competition to win two stunning nights in a flower filled Love Cave.

How romantic and gorgeous would winning this prize be !




One lucky winner will receive a $3500 value prize consisting of two nights at this exclusive couple’s retreat in the Blue Mountains (1 hr drive from Sydney), over $1300 worth of romantic flowers and Ecoya candles adorning the cave, and a bottle of Moet et Chandon and chocolates on arrival.

http://enter.flowersforeveryone.com.au/giveaways/the-love-cave/?lucky=17828
Photo from their webpage.

I love the song.


My new favourite family photo.

Sun rise - nothing better than waking up to this and a walk along the beach ...not that in happens much living in outback NSW.

My boys going back to school, not sure who love sit more ???? I do miss my sleepins.

Monday 8 February 2016

Never have I ever


This prompt got me thinking. I've done a lot of things in 49yrs , still there are many things I haven't.

I fear creating a bucket list more then ever now, after three wire bristled brushes with cancer in three years.

I did write about it just days after I started my first chemo cycle threeyears ago.

 How to create a Bucket List

It's a rusty fire bucket now !


Everyone supposedly has at least one thing that they would really love to do before they die. In theory , I know for me , it's Ah, the bucket list ...hey ! I don't want to even think about it

A LONG while back I started a 101 in 1001 days , it's really a list of goals. Unfulfilled in my case after too many years.

Think like the meme 101 things before I ..., 40 before 40 etc . I'm up to 50 before 50.

While I might not actively have a bucket list that I maintain or write down - I know there is such an incredible wealth of things I could try ...better to fail than never try.

No-one knows how long or little time we have here on earth ! I feel fearful and apprehensive now still facing uncertain prognosis . Talking about my mortality does my head in , my friend Meg. passing away last week from the same malignant sarcoma and genetic disease (NF) as I have and now my young uncle in his 50's receiving devastating news of his cancer's return.

Still a Bucket list is an ingenious way to motivate myself to get the most out of life.

More.

To not to let it all pass me by, to make me feel that I can accomplish and experience something in this wonderful life. I know I don't want to be too lazy or chicken to try things just because I might fail.


This is not my bucket list , just a random list I found on google.

Never have I ever



… had to run to save my life.
… taken part in a talent show. ~ no talent Trish
… made money by performing on the street.
… broken something at a friend’s house and then not told them.
… snooped through a friend’s bathroom or bedroom without them knowing.
… walked for more than six hours. ~ Relay for Life
… jumped from a roof.
… shoplifted.
… set my or someone else’s hair on fire by accident.
… ridden a horse.
… had a bad fall because I was walking and texting.( don’t count the poles I’ve walked into)
… been arrested.
… gone surfing.
… walked out of a movie because it was bad.
… broken a bone.
… tried to cut my own hair.
… completely forgot my lines in a play.
… shot a gun.
… had a surprise party thrown for me. Worse experience ever – hated it.
… cheated on a test...that I can recall
… dined and dashed.
… gotten stitches.
… fallen in love at first sight.
… had a paranormal experience.
… accidentally said “I love you” to someone.
… hitchhiked.
… been trapped in an elevator.
… sung karaoke in front of people.
… been on TV or the radio.
… pressed send and then immediately regretted it.
… been so sun burnt I couldn’t wear a shirt.
… been awake for two days straight.
… thrown up on a roller coaster.
… dyed my hair a crazy color.
… had someone slap me across the face.
… worked with someone I hated with the burning passion of a thousand suns.
… danced in an elevator.
… cried in public because of a song.
… texted for four hours straight.
… chipped a tooth.
… gone hunting…unless you count boys
… had a tree house.
… been to a country in Asia.
… been screamed at by a customer at my job.
… spent a night in the woods with no shelter.
… read a whole novel in one day.
… gone vegan.
… been without heat for a winter or without A/C for a summer.
… gone scuba diving.
… lied about a family member dying as an excuse to get out of doing something.
… bungee jumped.
… been to a country in Africa.
… been on a fad diet.
… been to a fashion show.
… been electrocuted.
… had a bad allergic reaction.
… been in an embarrassing video that was uploaded to YouTube.
… thought I was going to drown.
… worked at a fast food restaurant.
… fainted.
… looked through someone else’s phone without their permission.
 ....  Done a nudie opps I mean undie run in public


please get behind me
https://undierunsyd2016.everydayhero.com/au/trish

  
I Must Confess