Friday 10th July 2020

Out & About: Head & Neck Charity Ball 12/51 #LifeThisWeek. 24/2020.

Out & About: Head & Neck Charity Ball 12/51 #LifeThisWeek. 24/2020.

Regular readers and followers know I was diagnosed with a head and neck cancer in May 2017. Posts are here.

Then, in 2018 I was invited to become a Community Ambassador for Beyond Five. More about that here.

In my role helping share awareness of head and neck cancer facts and more via social media, this blog and in person, I really find it satisfying to give back:

  • to offer my skills and experience as an educator
  • and to feel and stay connected with other patients and their families/carers with a head and neck cancer,
  • attending meetings on-line and off relating to head and neck cancer support
  • to be part of social network head and neck cancer groups
  • to assist professional teams including my professor, speciality nursing staff and allied health professionals by sharing my experience on-line and in person
  • a recent interview for a Beyond Five project on nutrition
  • and then this……

Attending The Head and Neck Charity Ball at Avoca Hosted by Four Amazing Junior Doctors on Saturday evening 7 March 2020.

 

Here is the post from Beyond Five: the organisation to benefit from all the fund raising from attendance and silent auctions:

Beyond Five

Last Saturday night Caitlin Frede, Grace Swain, James Shannon and Catherine Zil, a dedicated team of junior doctors working within Central Coast Health hosted a #HNC Charity Ball https://buff.ly/37Aiejn at the Avoca Surf House in NSW to help raise awareness of #HNC and funds to support Beyond Five.

Over 100 people attended including Caitlin’s family, who lost her father Peter Frede to #HNC in 2015, and healthcare professionals from the Central Coast Cancer Centre.

Caitlin shares the stark and moving story of her father here. Thank you Caitlin for sharing your perspective in this cancer which has cost your family the presence of a husband and father…and a wonderful human being….

Dinner guests listened to powerful speeches from Caitlyn and former patient, Central Coast resident and Beyond Five Community Ambassador, Denyse Whelan who talked about her treatment for #HNC. Dr Puma Sundaresan, Radiation Oncologist at Western Sydney Health and Beyond Five Director also spoke about the need to raise awareness of #HNC and the importance of early detection.

Thank you to everyone who supported this fabulous event, helping to raise over $4,000 for Beyond Five. We are incredibly grateful!

My social media recount of the evening. 

A glorious evening at Avoca beach hosted by a group of junior doctors currently working on Central Coast to raise funds for @beyondfiveorg

As a head and neck cancer patient I know information shared helped me.

This is why I am privileged to be a Community Ambassador for @beyondfiveorg

Tonight I shared part of my story with over hundred guests many of whom were in

health medical dental allied health fields.

My thoughts during and after this event.

  • How fortunate we were as a group to be able to come together as this preceded the coronavirus restrictions, even though at this time, everyone was become familiar with what would be our future without handshakes and hugs. I was so honoured to be asked to speak about my head and neck cancer experience and meeting with Caitlin for coffee as part of her planning I was even more impressed with her initiative of that of her colleagues. They are working on the NSW Central Coast as part of their medical training.

 

  • Lisa Shailer, pictured above, is the Head and Neck (and Lung) Cancer Nurse who oversees new and on-going patients at Central Coast Cancer Centre at Gosford Hospital. She, along withe some head and neck cancer patients, started the Central Coast Head and Neck Cancer Support Group. Lisa is the person who ‘found me’ via my article on-line with local MP Emma McBride and invited me to attend the inaugural Soup for the Soul event at Gosford in July 2018. Since then I have been an active member of the group, in my role as an Ambassador for Beyond Five.

 

  • Dr Puma Sundaresan and her husband attended the event and whilst Puma represented the board of Beyond Five, she was there for sentimental reasons as she was a radiation oncologist on the Central Coast before taking up her current roles in Sydney. She spoke about the fact that the rise of head and neck cancers in younger people is becoming greater and there is a connection with HPV. She outlined too, that the Central Coast has a high rate of head and neck cancer cases relating in many cases to smoking and drinking.

 

  • For me it was an evening where I felt privileged to be amongst people who cared about head and neck cancer and getting the messages out there. One person came up to me and told me she is a dentist in the practice where I attend and where, along with my dentist, I first was told we were looking for cancer. What is was we did not know, but I am very grateful she showed support as does her workplace.

 

The future is bright. 

Yes I said that! We are, at the time of writing, in a pandemic state thanks to coronavirus or COVID-19 of course. I know there are going to be more restrictions imposed on many of us soon, For some, travellers and others, some cannot even get home. But I know, with the air of care, professionalism, hope and generosity I witnessed on this evening with the focus on helping others with head and neck cancer support, we have excellent people in our health professions. These times ahead are going to test them. However, if they can remain true to themselves using the skills, talents and more I was privileged to witness the future will be bright.

Notes on the fundraising experience.

These next months are going to see no gatherings for meetings and fundraisers for any cause.

Head and Neck cancer charity Beyond Five usually hosts a Soup for the Soul Fundraiser in July.

Whilst we do not know what that month will bring for getting together we may assume, like the Head and Neck Patient and Family Forum now moved from June to October, there may be flexibility in fundraising.

Maybe like my last two years, a virtual Soup For the Soul!

Recent update from the Head and Neck Charity Ball is that $4.400 was deposited into Beyond Five’s account. Yay.

Lastly….

What a beautiful scene from this event place at Avoca Beach N.S.W.

Take time to notice nature is always calming…and for  many of us in uncertain times, this can help.

Go gently and stay well everyone.

Denyse.

Link Up #181.

Life This Week. Link Up #181.

You can link up something old or new, just come on in.

* Please add just ONE post each week! NOT a link-up series of posts, thank you.

* Feel free to go with the prompt for the week to add your ‘take’ on the prompt. Or not.

* Please do stay to comment on my post as I always reply and it’s a bloggy thing to do!

* Check out what others are up to: Leave a comment on a few posts, because we all love our comments, right!

* Add a link back to this blog in your post somewhere, or on your sidebar or let others know somewhere you are linking up to this blog’s Life This Week.

*Posts deemed by me, the owner of the blog & the link-up, to be unsuitable for my audience will be deleted without notice. These may include promotions, advertorials and any that are overly religious or political or in any way offensive  in nature.

* THANK you for linking up today!

Next Week’s weekly optional prompt is: 13/51 . Chocolate.  30.3.2020.

You are invited to the Inlinkz link party!

Click here to enter


 

 

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest

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.

 

You can link up something old or new, just come on in. * Please add just ONE post each week! * Feel free to go with the prompt for the week to add your ‘take’ on the prompt. Or not. * Please do stay to comment on my post as I always reply and it’s a bloggy thing to do! * Check out what others are up to by leaving a comment because we all love our comments, right! * Add a link back to this blog in your post somewhere. I don’t have a ‘button’ so a link in text is fine! *Posts deemed by me, the owner of the blog and the link-up, to be unsuitable for my audience will be deleted without notice. * THANK you for linking up today!

Next week’s link up: 31/51 Gratitude 5/8/19

 

You are invited to the Inlinkz link party!

Click here to enter


FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest

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.

 

 

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest