Tuesday 18th June 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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Comments

  1. What a wonderful organisation – I knew very little about mouth cancer but am now much better informed, thanks to you! I have no doubt that you have enlightened many others and helped people who find themselves with a similar diagnosis. You’re a great advocate and a great inspiration to many others. As I won’t be there in real life on Friday, I will definitely shout you a bowl of virtual soup! Keep on being awesome!

    • Thanks so much Sammie. I understand that thyroid cancer ‘may’ be included in the head and neck cancer groupings. Yes I guess once diagnosed and being ‘teacher me’ I felt I not only had to write for my sake but to help any others. As you did. Inspired by what you did to start your blog. Now look at you!

      Your donation to my virtual soup for the soul fundraiser is appreciated!

      Cheers,

      Denyse x

  2. I love all this information. Some cancers get a lot of coverage and even if you don’t know anyone who has it, you know about the cancer. I knew very little about head and neck cancer and want to thank you for sharing all this information with us.

    • Thank you. Head and Neck cancer cases are increasing and that is a big reason why the information needs to get out there. HPV is one cause of the increase. My particular cancer diagnosis remains somewhat mysterious as I did not have HPV nor have I been a drinker or a smoker. It is said, however, that as we age (67 when diagnosed) sometimes the cells don’t behave and there were some signs of something happening in my mouth for some time. Just fortunate to have doctors with the current knowledge and skills to make me a new mouth and take away the cancer.

      Denyse x

  3. I am very impressed that your local member takes the time to talk to you about these things. I hope if her office does something on the day that it helps the awareness.

    • Thanks I agree and in my previous Federal electorate it was the same.

      Two very switched on female MPs who took an interest in what I was up to. In Sydney’s Greenway my MP asked me to come along and have five minutes with PM Julia Gillard in 2013.

      This year, my federal member for Dobell did a door knock (on her birthday!) and we connected…and she got a cupcake from me. So when I wrote to her she knew who I was and yes it was good of her to take that time for learning more about World Head and Neck Cancer Day.

      Denyse x

  4. WHNC Day! I have never heard of that. Like you, I also didn’t know you could get mouth cancer. So happy there is a special day to ensure people check from the neck up for cancer as well as from the neck down.

    Side note: Our C is in Sydney today, Scans to determine results of chemo. Hoping to hear tomorrow that she is cancer free. #thepowerofpositivity #belief #miracleshappen

    • Thanks Leanne. As a cancer patient AND teacher I believe I can help others by using my knowledge and skills. The blog is good for that too.

      I so hope all the news is good today and tomorrow for C.

      Everything crossed….

      Denyse x

  5. Those first photos of your cancer were so confronting Denyse – I knew you had been battling it, but the scale is really put into perspective when you see those pics. Good on you for giving back and being a part of Beyond Five and getting the message out there. Head and neck cancer definitely don’t get enough media time.

    Thanks for linking up with us at #MLSTL and I’ve shared this on my SM x

    • Thank you Leanne. I thought long and hard about whether I would publish what the cancer looked like. This was a photo I took the night before July 6 Surgery. However, given that over a year has passed and still I am having treatments for getting teeth eventually I felt it put the journey into perspective. When your whole upper mouth is taken away it is confronting. So it was time for me to be as upfront as I was prepared to be.

      It is a relatively new charity helping patients and families and as someone who is both a teacher and a head and neck cancer patient it seemed appropriate for me to help as much as I can.

      Denyse x

  6. I am in awe of your efforts to raise awareness of this issue Denyse, all the while battling through your recovery. I congratulate you for spreading the information and sharing the good work that gets done. Hope you are going ok.

    • Thanks Debbie. I am in the right head space to help and it’s a great way to spread my time and energy instead of being focussed on ‘what’s wrong’. I am not Pollyanna but as a teacher I always seek ways in which to learn for myself and then, if I can, help others.

      Denyse x

  7. Good for you Denyse to highlight WHNC Day and to share with us at #MLSTL. The problem is that there are so many cancers that many of us are unaware of them beyond the ones that receive the most media attention. I had no idea of your type of cancer and I think that it is wonderful of you to spread not only the message that this type of cancer exists, but also that you are living proof of what determination can do. Keep it up, Denyse you are so inspiring. xx

    • Thank you Sue for your generous and kind words. I guess, once I “knew” more and how I realised how many cancers even within the Head and Neck group are not well-known at all I felt obliged to share but also wanted to help others.

      Many thanks for your constant support. It buoys me!

      Denyse x

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