Sunday 22nd September 2019

WHNCDay, Beyond Five, Soup For The Soul & Emma McBride MP. 2018.62.

WHNCDayBeyond Five, Soup for the Soul & Emma McBride MP. 2018.62.

Let me start with this.

I was diagnosed with a head and neck cancer in May 2017.

I had no idea that a cancer could be in my mouth.

Many posts here have charted my journey and it has been ever so helpful for me to post, learn and help others too.

What is WHNC Day?

It is World Head and Neck Cancer Day and is on 27 July each year. Last year, on this date I attended my first post-surgical appointment at Chris O’Brien Lifehouse and there was nothing anywhere to indicate it WAS WHNC Day.

This year IS different. For me, and for more people who are coming on board to spread the word which is AWARENESS.

You see, as I was ignorant of mouth cancer, many who may eventually be diagnosed with a head and neck cancer (not brain cancer, it is a different group and speciality) and sometimes too late for life-saving treatment.

I’ve been wearing a ribbon from Beyond Five for the past weeks and having my photo taken to raise awareness. The ribbons are $3 each and available from Beyond Five (address is below)

Around the world there are organisations of professionals, patients and carers gearing up for this date with meetings, a conference is being held in Melbourne where I know my surgeon, Professor Jonathan Clark is attending along with my Specialist Prosthodontist, Dr Suhas Deshpande and an event, in Australia for the very first time called Soup for The Soul.

Beyond Five 

I first heard about Beyond Five in June 2017 as I was approaching my BIG (as I still call it, because it was!) surgery when A/Professor Ardalan Ebrahimi answered my long email very helpfully and suggested I check out Beyond Five as it was an organisation he and the Professor had started. At the stage I did glance at areas on-line but my mind was not able to take in much.

As I have moved well into recovery mode, my story was added to Beyond Five’s patient experiences in April 2018. As an educator AND blogger as well as head and neck cancer patient I became better acquainted with the organisation. Here is part of their mission.

Beyond Five is Australia’s First Head and Neck Charity supporting patients with head and neck cancer, as well as their families, carers and the healthcare professionals who care for them.

Their Story:

In 2014 a team of passionate people working within the field of head and neck cancer care had a common desire to provide access to information about head and neck cancer to people all over Australia.

Head and neck cancer is incredibly complex and diverse. It includes more than 10 different cancers that can affect a person’s:

  • mouth
  • tongue
  • salivary glands
  • skin
  • voice box

Each type comes with its own causes, symptoms, characteristics, complexities and treatment options.

There was a real need to provide comprehensive information in one place that was easy-to-access.

We spent 24 months gathering the content with the input of:

  • surgeons
  • radiation oncologists
  • medical oncologists
  • nurses
  • speech pathologists
  • dietitians
  • dentists
  • plastic surgeons
  • psychologists
  • health literacy experts
  • patients
  • carers

We included information for all of the stages of the cancer care journey from diagnosis through treatment to life after cancer. This means that patients and carers can easily find the information they need at the right time.

Beyond Five launched in September 2016.

(side note: my diagnosis date, May 2017)

Why Beyond Five?

When we talk of curing cancer, we talk in terms of  five-year survival. However, in patients with head and neck cancer the effects of the cancer and their treatment stay with the patient forever. These effects may be seen as scars on the face that cannot be hidden by clothing or may be difficulties with speech and swallowing.

The name ‘Beyond Five’ refers to the long-term need of patients which they often need more beyond five years after diagnosis. Find Beyond Five here: 

Soup For The Soul.

The sotry above indicates that Beyond Five is a charity that is new to the scene to help patients with cancer. In fact, this year is only their 2nd year in full operation. So, the FIRST every fund-raiser is happening and it is called Soup For The Soul.

Why that name? It IS winter, so it is a great idea to have some soup with friends and ask for a donation towards Beyond Five and their messages needing to get out to more. Another, and even more important reason is the symbol of what soup means for people with head and neck cancer. It is often the life-line food of nourishment and care. I had a lot of soup last winter and more this winter even though I can get some less liquidy foods down now.

For the week 20 July to 27 July (WHNC Day) there are events and meals and gatherings planned around Australia. I am off to one at Gosford on 24 July with a head and neck support group. I am hosting a “virtual” event for my blogging, facebook and other friends and I have opened a fund-raising page here.

Please donate what you can afford. I suggest $5 as that’s a bowl or a cup of soup!

Here is the link to my page, where the donations are sent directly to Beyond Five after the organisation looking after the funds takes a certain amount for their costs. This varies according to the amount donated.

Emma McBride M.P.

Emma is our local Federal Member and I wrote to her asking if she would accept a fund-raising ribbon from Beyond Five from me. A very busy lady as you can imagine, I was surprised and delighted to receive a call from her office in Canberra to say Emma wanted to come to our place, if that was convenient, to find out more and to accept the ribbon. So on Monday 9 July we did have a very pleasant chat and took some photos which went on social media and I am told there may be something happening on 27 July to raise some awareness for head and neck cancer and some funds via Soup For the Soul. I am very grateful!

I know there was a lot to read and get through today but this post has been getting ready to be published in advance of World Head And Neck Cancer Day and I wanted to cover all the information.

Thank you for reading…and I hope, commenting!

Denyse.

Joining with Kylie on Tuesdays here

Joining with Sue and Leanne here on Wednesdays.

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