Sunday 18th August 2019

Share Your Snaps #6. 30/51*. #LifeThisWeek. 81/2019.

Share Your Snaps #6. 30/51*. #LifeThisWeek. 81/2019.

*The World Head & Neck Cancer Day and Soup For the Soul Version 2019.

Every 5 weeks here, there is a photo-based post called “Share Your Snaps.” I sometimes need to add words…that’s me. This time around I am letting the photos tell the story of World Head and Neck Cancer Day and Beyond Five’s Fundraiser: Soup for the Soul.

July 2019.

July has been chosen internationally (since 2015 I believe) to have one date noted as “World Head and Neck Cancer Day” 27.7.19. Like most ‘events’ health-wise, this one has an origin in the U.S. and the colours for Head and Neck cancer internationally are maroon (burgundy) and cream. In Australia those who follow Queensland in State of Origin would be impressed. Moving on.

The only charity devoted to Head and Neck cancer awareness in Australia is Beyond Five. Regular readers will know as a head and neck cancer patient I was keen to help share information about this little-known cancer and late in 2018 I was invited to become a volunteer Ambassador. I have written more here.

How did this July go?

I held a virtual Soup for the Soul event which raised $355. $385 as of time of publication! Thank you all.

My Soup for the Soul

I promoted Soup for the Soul via social media and there was also a ‘real event’ at the Central Coast Cancer Centre: hosted by the centre and the head and neck support group with donations of soup, rolls, the space in which to hold the event, prizes we got as donations for a raffle and my tiny cupcakes were sold. There were quite a few of our group there and here we are. FYI, in this photo there are 7 of us with head and neck cancer.

Some snaps from the day.

Beyond Five Information Sharing.

Promotion of WHNCD and Soup for The Soul via My Local M.P.

Last year, the Federal M.P. for Dobell, our area, Emma McBride kindly came to our place to meet with me to hear more about head and neck cancer and to support Soup for the Soul.

July 2018.

From time to time, I have kept Emma apprised on my progress, and recently wrote to her about this year’s event. She was able to meet with me, on the ACTUAL World Head and Neck Cancer Day to both offer her support and then share via social media. Emma and I also discussed the importance of carers and she is now the shadow minister for carers and mental health. Thank you Emma and also Jacqui for organising this!

July 2019.

What Next?

I admit I need a little break from all things head and neck cancer but then again, how I would do that when it is part of me, I am not sure!!

I am making a walk each day my focus and I am getting back to noticing nature and of course, the dressing with purpose and going for a coffee EVERY day remains essential to my wellbeing.

How do you go looking after yourself after an intense time of busy-ness?

Denyse.

 

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Head & Neck Cancer. June Updates & WHNCDay 2019. 64/2019.

Head & Neck Cancer. June Updates & WHNCday 2019. 64/2019.

It would be remiss of me not to do an update in June….yes it would!

Having a CT ‘Surveillance’ Scan.

Following my 2 year (and every 3 month) cancer check my Professor determined it was now time for a ‘baseline CT scan’ of head, neck and chest. Ok. OK! It is a funny old thing, this cancer business until you “know” what the results are. There were no visible signs anything would be found…but…

I went. I was a bit nervous. I was finished in 20 minutes. Then I waited for a day, then another. Until I sent an email: already knowing my surgeon had a huge week but hoping he had a result. He did, I was told on the phone by his lovely practice manager: “ALL CLEAR”. Yay.

That week I also visited my dentist – the person who I convinced to remove the bridge & teeth in April 2017 where cancer was eventually found. He was able to check out all that had happened in the past 9 months and clean my remaining 8 teeth. I have an amazing team caring for me.

The First Week In June 2019.

This week marked the ten years since Professor Chris O’Brien, Head and Neck Cancer Surgeon, died from brain tumours. His legacy is so many people who trained and worked with him at R.P.A. and now at Chris O’Brien Lifehouse. His widow Gail O’Brien said recently that without Chris getting cancer he would not have understood the need for cancer patients to be cared for nor treated as well without his vision for a ‘one stop cancer care’ place. He knew that a specialist hospital -comprehensive cancer centre – would happen but he did not know of course that its obvious name would be his in the title.

On Monday 3 June I attended Lifehouse to hear the ‘stories’ of working with, knowing and loving the man called Chris O’Brien. This was a presentation about his legacy in head and neck cancer and as a patient with #hnc as its shorthand name is on twitter, I learned from those who have treated me and who paid tribute to Chris. In fact my surgeon’s final words of his talk were “there’s a little bit of Chris in everyone’s role”.

Later when I got to say hello again to Gail and to thank her for the work of Chris O’Brien, I said even at my most scared – one day after being told I had cancer – when I walked into Chris O’Brien Lifehouse I felt different. It was not a ‘hospital’ as I knew, it was full of interesting places and spaces and caring people. I felt safe and cared for. And still do. Each time I walk in, I look up at the various images of Chris and others and I am very grateful.

Being An Ambassador For Head & Neck Cancer Awareness with Beyond Five.

In June it’s time to ramp up the Head and Neck cancer awareness as we lead into the last week of July 2019 where World Head and Neck Cancer Day is marked with programs, conferences and more on 27 July 2019.

The colours for Head and Neck cancer world-wide are Maroon/Burgundy and Cream.

 

My #HNC & #B5 Lanyard with my card & Ambassador badge

Beyond Five. 

For Head and Neck cancer patients, family and friends. This is a website and offers lots to help. It continues to grow and change but with no government funding, some donations by companies in related fields and one part-time business manager, a fund-raiser began for them in 2018 called Soup for the Soul. Soup is often a food that patients with head and neck cancer can manage and it is comforting.

Soup for the Soul is already live and I have a Virtual Soup for the Soul page here. More about that as we get closer to World Head and Neck Cancer Day on 27 July.

World Head and Neck Cancer Day: 27 July 2019.

Soup For the Soul Event at Gosford: Central Coast Cancer Centre. Tuesday 23 July 2019.

In June I will be working with the local Head and Neck Cancer Support Group at Gosford to prepare for our Soup For the Soul and Head and Neck Cancer Information and Awareness Day on Tuesday 23 July 2019 at Central Coast Cancer Centre. A year ago I went to the first occasion and met people who also had head and neck cancer and were carers and professionals too. It was the first time I had met anyone else with head and neck cancer. Now the people there have become friends of mine.

From 2018 World Head and Neck Cancer Day & Soup For the Soul at Gosford:

 

This post is to also support others around the world who will be part of the World Head and Neck Cancer Day in 2019.

Do support the charities which help with research and awareness of Head and Neck cancer.

In my case, the link in the story about my virtual Soup for the Soul event will take you directly to donate to Beyond Five’s continuing awareness updates and programs to help those affected by Head and Neck cancers.

Thanks for following my Head and Neck cancer stories. This is the link to where all of my Head and Neck cancer posts are as well as those that have been published elsewhere.

Warmest wishes

Denyse.

 

 

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