Thursday 24th January 2019

Head & Neck Cancer: “Beyond Five” Ambassadorship.2018.130.

Head & Neck Cancer:”Beyond Five” Ambassadorship.2018.130.

Last week I wrote a post called Farewell and Hello. It was pretty long so I stopped at Farewell promising to be back for Hello. Here we go!

Regular followers here know that I was diagnosed with head and neck cancer (squamous cell carcinoma) in my upper gums and under the top lip. The whole story is here, in posts, from the day I was told until the recent post on adjusting my eating requirements when I am out of the house.

Hello, I am now a Beyond Five Ambassador!

How this came about was partly after this day in October 2018 when I was back at ‘my’ hospital Chris O’Brien Lifehouse, but I had offered earlier this year if there was any way I could help spread the news about head and cancer awareness I would like to do so. I had already been sharing the work of Beyond Five here on the blog for World Head and Neck Cancer Day 2018.

Following that day, the Board of Beyond Five met, Sr Froggatt and Professor Clark are board members and Nadia Rosin is Manager, Business & Communications,  and I then received a formal letter of invitation to become a Beyond Five Ambassador.

Role of Community Ambassador

  • • Share your personal head and neck cancer story for use in Beyond Five communication e.g. website, social media portals etc.
  • • Raise awareness of Beyond Five through family, friends, other personal connections.
  • • Where possible, attend events e.g. patient support group meetings, education days to help raise awareness of Beyond Five.
  • • Support Beyond Five grant applications where relevant e.g. as a consumer representative.
  • • Provide feedback to Beyond Five to help us improve and develop the way we work.

About Beyond Five.

Background

Beyond Five was established in December 2014 and is Australia’s only not-for-profit organisation supporting patients with head and neck cancer, caregivers, family and health professionals.

Beyond Five was established to provide evidence based, comprehensive, easy to understand and easy to access information to everyone, regardless of where they live.

Beyond Five is the first organisation in Australia supporting patients and their families through their cancer journey, from diagnosis to treatment and life after cancer.

Mission

Beyond Five’s mission is to improve the quality of life of everyone affected by head and neck cancer through education and access to support and to raise awareness of head and neck cancer nationally. We are committed to working collaboratively with all specialties across Australia to achieve our mission.

 

I have joined the inaugural Ambassador, Julie McCrossin and Marty Doyle too. Their stories and mine, can now be found here on the Beyond Five site. There will be more ‘thinking time’ for my involvement and what form it may take as everyone is going to be on a break soon. We are getting together in February 2019. I look forward to helping where I can especially now I am post almost all of my cancer treatments and now in ‘check-up and check-in’ mode.

I know that I am keen and ready to help others learn more about head and neck cancer as it is not well-known. In fact I had no idea you could get squamous cell carcinoma inside your mouth (and other areas of the skin inside the head & neck region, till my day of diagnosis in May 2017.

And here we are sending Season’s Greetings.

I wish that no-one had cancer of any kind, of course, but the fact of life is we do. I want as many do, to help pay back the time and effort and research that has gone into the amazing surgeries and mouth reconstructions I had. That I can smile and eat well again is testament to the wonderful work of my team and their integration of allied professionals too. I have written posts about how many helped get me well again. Now, it’s onward….and to say I am glad to be an Ambassador for Beyond Five is an understatement. It is an honour and a privilege to be in this new role.

I want to do the role justice, and help others as I too have been helped.

Thank you to the Board of Beyond Five for entrusting me with this role as your Ambassador.

Denyse.

Joining with Sue and Leanne here for Midlife Share the Love and with Leanne here for Lovin Life link up.

 

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Favourite Weather. #LifeThisWeek 3/52. 2018.5.

Favourite Weather. #LifeThisWeek 3/52. 2018.5.

Last Sunday, 7 January,  the temperature outside our house on the Central Coast rose to 43 degrees celsius. Lucky us, we thought, at least we have ducted air-conditioning! THAT, unfortunately did not last. No, like many others, our house lost power.

An outage that lasted 70 L O N G minutes where we both did our best to survive inside.

Just as decided to leave the house, to get in the air-conditioned car to go somewhere for a drive, the power kicked back in. Oh. My. Goodness. Fortunate for sure. However, given that the worst days of Summer heat are yet to arrive, as they did last year in February then we MAY not be feeling as comfy as we were. In fact, the management of Ausgrid who manage the electricity services here came out and said words to the effect of “it is highly likely there WILL be further outages with extremes of heat which put pressure on the electricity grid”. Great. Not. Later in the afternoon I DID go for that drive and it was STILL hot!

Wondered why I chose this optional prompt and then I realised I have been obsessed by the weather and its extremes for years. We lived and taught in Western NSW for 8 years and with little or no air-con, we survived. Is it an age-thing? In 1978 we bought our first house and the affordable area of Sydney then for us was in the north-west and so, knowing we needed our comfort levels at home for both cold and heat, we put in ducted air. From then on wherever we lived, we have managed weather extremes at home as well as we could (and a swimming pool always helped too) …but not when it came to work in schools.

We both worked in un air-conditioned schools and it was always HOT in the summer months and late Spring months. I remember dreading presentation days out west where I would be dressed in my best  and seated on the stage. I was an avid watcher of the TV weather reports and those on radio long before the internet told us everything. 

So hot most times in December. I was (and am) an avid weather watcher. In fact since the extreme heat of February 2017 where the temperatures stayed around 38-42 celsius for 5 days I have subscribed to Higgins Storm Chasers. Not sponsored but for annual  membership the warnings and forecasts these guys send are better than the Bureau of Meteorology for me. Here is the link to their site.

So What is My Favourite Weather?

Unsurprisingly it is the warm days of Autumn and Spring with some breeze blowing. I also don’t mind warmer days in Winter where I can sit and feel a little warmth on my back.

However, in contrast to the equilibrium found above, I also like following some of the extremes of weather to take photos and to be part of it.

I take care of course, but I do like visiting the coastal areas when there are big surfs and windy conditions. Something about being in the elements that takes me out of my head and into the whole senses’ experience.

My weather pics show what I like here:

So, what is your favourite weather?

Hoping you have linked up today and remember the posts can be old or new, off or on prompt too!

Cheers,

Denyse.

Joining with Alicia here for her Open Slather link up.

Join in here today for #LifeThisWeek 3/52.

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 optional prompt: 4/52. What is Kindness? 22/1/18.


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