When You’re Diagnosed with a RARE Cancer – Part 1

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Did you know that 1 in 5 CANCERS diagnosed are RARE cancers? And more rare than the cancer itself, is the support available to the thousands of people diagnosed each year? These were Desiree’s findings when she was diagnosed with Adenoid Cystic Carcinoma back in 2009. BUT she decided to make a difference, and in 2013 WITHOUT A RIBBON was born to support others living with rare cancer.

 

As promised in my previous post, today I am sharing Desiree’s personal story. In fact, this story is so inspirational and informative that I decided to divide in two sections. The next post is about the journey after Without a Ribbon been recognised by Australian Government including some tips in terms of financial security for your family.

 

When I first meet Desiree, I couldn’t imagine such incredible life story was behind that friendly, energetic and positive human being I had just met. There was a reason why the universe put us together in that room!

 

Part of my project is also to help to spread the word about natural therapies and treatments available that can be an option or a complement to the traditional procedures. Educate, inspire and help people to deal with these conditions whether you are the patient, friend or family member.

 

GUEST BLOGGER:  Desiree Fraser – Founder of WITHOUT A RIBBON, a rare cancer CHARITY.

 

Who Was I Before the Rare Cancer

Firstly, I was a single mum of three.  A small business owner of a successful Financial Planning business.  I loved helping my clients; it was a career that made me lots of friends.

At the age of 38 yrs old, I would run 5 km every week day to manage my stress.  I probably drank a little too much red wine.☺ And I loved spending my spare time with my friends.

 

The Diagnosis

Being diagnosed with cancer is tragic.  The first thing I thought was “Why Me?”, The second thought was “Why Not Me!”.

The tragedy of this diagnosis was that not only did I have cancer but it is also a very rare form and cannot be cured.  Without cure and no hope, it is unfathomable!! Your next thought is “So how long have I got left?”.  Well in my case, it is slow growing, so I’ll be battling it for a while. So now what do I do?

 

1^st Medical Planning Meeting

We are going to remove 1/3^rd of your jaw and ½ your palate, we are going to use bone from you hip, skin from your arm, and skin from your leg.  At best, you’ll look like a stroke victim and worst your look like someone who is horrifically disfigured.  But at least, you’ll be alive – For Now! – the doctors said.

 

Treatment with No-Cure

7 yrs, 47 Operations/Procedures, 36 Treatments of Radiation and 30 Treatments of Hyperbaric. I have used more than 27 different types of drugs and have now been diagnosed with another “Rare” condition called Lymphatic Microscopic Colitis.

The doctors believe that it was probably bought on by some of the drugs combinations they recommended to take.  That’s now two “Rare “ things.

I now warn the doctors when they find something; they are never to call it “Rare” again.  Unique will be the word to be used in the future.  All I want is a month without having to use my Medicare Card, visit a Doctor or not have to go to a Pharmacy.

 

SO… Why Was I Born? What is My Purpose?

This was my question at very early stage of my diagnostic. “What was my purpose?”  “Why did this happen to me?”  “What went wrong in my past that this was now my destiny?”  “How can I plan my future, when I don’t know how long it will be?”

After some sole searching I realised I wanted to make a difference.  What could that be, I didn’t know.  But I was definitely going to leave something as my legacy.  Something my kids could be proud of.

And besides, if I kept myself busy enough, then maybe if  “God” comes to tell me my time is up I can always to reply to him, “’I’m just a little busy now. Can you please come back later?” ☺

 

Picture 1: 3rd Annual Warriors United Conference (2016)

“WITHOUT A RIBBON”
2017 Gala Dinner
raises funds to support people
​who are
fighting rare cancer .

 

We would love you to join us at our 4th Gala Dinner in Melbourne March 25th.

 

How Do I Make a Difference?

I started with:

• 2010 – Fund Raising for Cancer – Relay for Life 24hrs after finishing radiation.
• 2011 – Fund Raising for Cancer Council – Myself and my son who was 11 at the time shaved our heads and raised $70,000 in a year.
• 2012 – Creating a support group for others with the same nature of cancer.

But it still wasn’t enough, so with the help of a great bunch of friends we established:

• 2013 – A national charity to all of those diagnosed with Rare Cancers in Australia –  Without a Ribbon.
• 2014 (June) – Without a Ribbon (WaR) was recognised as a charity by the Australian Government to provide resources and support.

 

Money raised through fundraising enables the organisation to provide rare cancer sufferers, those not supported by any other organisation, with INFORMATION, MATERIAL and SUPPORT relevant to their specific cancer. Without a Ribbon Inc organises various events and initiatives to raise awareness and funds, but you can also support this cause in different ways:  DONATE | SPONSORSHIP | VOLUNTEER | SUPPORT OPPORTUNITIES.

 

About Desiree

Desiree is the founder of “Without a Ribbon”, a rare cancer charity established in 2014 to assist those who are so small in numbers that they are not allocated a Ribbon through existing Cancer Groups in Australia.

After completing more than 25 operations/procedures and 52 treatments, Desiree’s passion to help others became her main focus. Her loneliness and isolation through since her own diagnose was so overwhelming at a time where support is critical, that she decided to ensure, no one else would ever have to endure the same experience.

 

Get inspired with the stories I share in this place!

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Your Friend,

 

 

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