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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Appreciation In August. #5. 2018.85.

Appreciation In August. #5. 2018.85.

Five weeks of Appreciation posts are concluding today with a list of people and businesses I wanted to share my appreciation for in my life and to spread the word to my readers and fellow bloggers. I have not been, as they say, sponsored nor paid for my post, I just tell things as they are. Enjoy!

The Big Hug Box

I first heard of the Big Hug Box and its founder, Lisa, via social media. Lisa tells her story on the website here and as a cancer survivor (from a rare cancer) she wanted to raise funds to give back to research. Lisa is a wife and an energetic Mum of 2 from Newcastle , who admired my hand-made book marks when she saw them.  I offered a suggestion of these as an inclusion in the gifts especially for those newly diagnosed with cancer & Lisa said “yes, please”. I love that my art can be made into bookmarks by me for others to use.

Thank you Lisa. I know we are yet to meet but I do know how kind and supportive you are. Lisa’s blog post about me recently.

https://thebighugbox.com/

Colour Me Well

Social media, specifically Instagram, was where I first saw the development of a colouring calendar from Sharon, at Colour Me Well. This is based on her experience as a cancer survivor where during her treatment she started making boxes on a page representing the treatment days, and colouring them to remind herself of how far she had come.

The calendar comes in a presentation box with a tin of quality pencils. Here’s my little story of becoming involved. Sharon was considering a new product, a greeting card/small gift with a message of kindness, connection and hope and she saw that a mandala would be an ideal mindful colouring pattern on the front.

I liked the idea, of course…mandalas..and set about designing specific once for Cards. Of the 6 designs available, four have been drawn by me. I have no payment for these. I did these out of love for helping others and again, of giving back!

https://www.colourmewell.com.au/

 

Fight Cancer Water Bottle

This is another venture by a cancer survivor who is Sharon too. As I watched the Instagram posts of @fightcancerwaterbottle I soon realised we lived in a similar area. When we met one day by “happy accident” this snap was taken and since then we have been out for a coffee. To read the story of this special water bottle and where the funds from one purchased ends up, it is all on the website.

https://www.fightcancerwaterbottle.com.au/

 

My Blogging Friend and C0-Owner of Skin Boss Australia is Kirsten.

Around the same time she and her husband started this unique business, I was in hospital recovering from my first BIG surgery. Via the kindness of many on a social networking group & this new business I was sent, among other items, Skin Boss Get Up and Glow and Skin Boss Sleep On It. (aren’t the names great?). To read more of the Skin Boss story…and to order some oils of your own as I have (the Body Oils were added recently ) go to the website. I did have to wait a while (some months actually) before I could regularly use the oils on my face as my skin was numb and tender. But now, it is a routine: day and night.

https://www.skinboss.com.au/

Little Blue Wren

I first heard of Jen (little blue wren) as she is a local Newcastle person helping develop products which help skin, specifically the lips. This product is part of the Big Hug Box. I also bought two of her lip balms and one sits on the desk where I am typing, the other on the desk where I create. They are lovely.

1 x Citrus and Peppermint Lip Balm – made locally here in Newcastle by Little Blue Wren. It’s blend of Citrus and Peppermint has been made with the highest quality “Young Living” Oils. (from The Big Hug Box site)

Find her products on Instagram.

https://www.instagram.com/little.blue.wren_/

 

Reading This. Listening to This Book.

I was drawn to this book by Megan Devine after following her Facebook page called Refuge in Grief. Her story as both a counsellor and someone who had the love of her life die in front of her is compelling.

I know that having a cancer diagnosis can feel like a death. Of the life that was an is no more. It is not something I dwell on much as I would rather not be consumed but I do know that listening to Megan read her book (I am a car listener) had me throwing out what were my beliefs about grief.

 

Kindness of “Strangers” ….the people in my Instagram Feed...you know what I mean!

I have followed a delightful and generous woman who I will call Linda…because THAT is her name! I really cannot recall exactly “when” we started to know each other via the usual social media channels but I do know I lucked in with her as a friend. She is one of my “cheerleaders” and I love her for this more. Recently after arriving home from yet another trip to Westmead a LARGE and somewhat weighty packed was on the kitchen bench. I smiled, when I saw the sender…and then I laughed and laugh/cried when I saw the contents. An amazing and beautifully hand crafted crocheted blanket that almost covers my king-size bed…in MY favourite combination of colours AND with a mandala in the middle. Swoon. It is the BEST. As is she!

 

 

Now, as you already know, if you have come this far, that my skin has been problematic for more than a year. My lips especially. I needed something very very dense and something well-known as a salve for skin.

Lanolips was it. I messaged them and told them of my situation and within a week or so, I got some mail! I was sent three types of their product and the bigger one is used just before I go to sleep. It really really helps.

Here is where to find them: http://lanolips.com They are a wholly Australia product. On Instagram: @lanolips

Mindfulness and Meditation.

I have had more than 3 years taking time each day (or night) for some specific meditation activities. For 3 years I paid for a Headspace subscription  and with a 30 days of Cancer program found that really helpful in my early months after diagnosis. Mid year, I changed tack and now have the Calm App as my meditation (and sleep stories) as a great find. Then just last week I became a founding member of Buddhify (they have a free app too) because I wanted to have more variation and one to listening to during the day.

I have found of course, just going outside and being in nature helps as does creating but if you are looking at apps for yourself, there are 0nes I have appreciated and enjoy.

Beyond Five.

I have known about Beyond Five since my cancer diagnosis in May 2017 but I was not really in a ‘space’ to take on much of its important information about Head and Neck Cancer until I was further into my understanding of “my cancer’. Squamous cell carcinoma. More about all of that here in my page.

Back to Beyond Five, which is a charity wanting to spread the message of early and timely diagnosis of all Head and Neck Cancers. From May this year until World Head and Neck Cancer Day on 27 July 2018 Beyond Five ran its first fundraising venture called; Soup for the Soul. I joined in with a Virtual Soup for the Soul event and over $400 was raised just by that. In total, $28,000 was raised. Most work and spreading of messages is via Head and Neck cancer support groups of which I am a member as well as on social media.

Some ways in which I appreciate the work is to tell more people of its purpose, including meeting my Federal MP to let her know more. Find Beyond Five here: 

My Dressing With Purpose, Art Journalling and Coffee.

Long time readers and followers know that I dress, with purpose, each day (and have done, with few exceptions) for almost 10 months now. Every. Single. Day. I generally go out by myself to have a coffee somewhere locally (I am up to 17 places now!) and I take time to reflect in my art journal. I find if I do not, for any reason, get to do this on one day, I am really, really ready for it the next day. The wonderful and sharing Styling You, Nikki Parkinson, has an amazing website and blog here, recently celebrating 10 years of helping women make the most of themselves….well, that has worked for me as I often share my daily photo on the facebook group and have won a weekly prize of Nikki’s book called Unlock Your Style.

 

The best is saved for last. This person. With me.

Words are inadequate for the depth of love and appreciation I have for the man, my husband, who had held me, comforted me and told me to use my skills in re-framing my thoughts and oh-so-much more…and who kind of forgives me for not measuring up to his cleaning standards…especially in the kitchen! 

This is the first photo of us…for a LONG while…where I can smile fully and it was taken by our 6 year old granddaughter on Sunday. Thank you Miss E.

Who or what are you appreciating today?

Denyse.

Joining here with Leanne for Lovin’ Life Linky.

 

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Oral Health & More From This Head & Neck Cancer Patient. 2018.71.

Oral Health & More From This Head & Neck Cancer Patient. 2018.71.

I know!

Another post about Head and Neck Cancer!

But there is a very good reason why!

Not many people, including our “every day” health professionals are all that familiar with the signs of a possible Head and Neck Cancer. This is why, over the past month, there have been posts, tweets, instagram and facebook status from various people, including me.

This list of symptoms is from Cancer Council. Head and Neck cancer does not cover brain cancer.

On 27th July 2018 it was World Head and Neck Cancer Day. The 4th one ever. The first one held in 2015 after it was announced by former President Bill Clinton in 2014 and H&N cancer patient, actor Michael Douglas seen and heard here:

Do you know I disliked (hate is too strong a word) going to the Dentist?

I started when I was under 5. Apparently my teeth ‘came up decayed’ after an early childhood illness of mine and so a trek to a very painful experience at the dentist in Wollongong as a kid became part of my life. Urgh.

I had to have fillings and extractions (my 6 year old molars came up and were taken out!) without any anaesthetic. Thanks Mum and Dad (not) for never letting me know you could have a needle to dull the pain. Dad recently corrected me on this ‘fact’ saying he did not know either. The dentist, Mr Stone, worked in a surgery up some stairs in a  building in Crown Street Wollongong. Recently, at Westmead Oral Restorative  Sciences I saw ‘the set up from my childhood’.

My dental history, once we moved to Sydney (and I found out about injection for numbing the fillings!)  continued from 1962 until 2017:  with the usual fillings, removal of teeth in my latter years, root canal therapy and finally a bridge with a crown in 2011 was placed over my front teeth. I also had a partial denture in the upper gums and one on the lower gums.

Sometimes, in the past 5 years,  a “new to me” dentist would proclaim that I was not cleaning well-enough behind the bridge and candida was forming. I followed instructions, I bought products to help, I swallowed more fungalin than anyone needs to…and I had a biopsy on a white spot at the top of my mouth between upper gum and lip. Nothing but more candida was the response. Oh. the stuff I used….and still nothing really got better until late 2016 into 2017..read here for the details.

The people who are so kind and helpful to me at my local here, and oh so relevant Dental Surgery are the ones who understood my anxiety re travel to their surgeries, “got it” when I had to cancel at the last moment (IBS) and were just the best when it came to me having my HUGE challenge of all the top teeth & bridge removed in April 2017 BUT were “there” for me from the receptionist to the dental nurse to the dentist. It has been on of my life’s real blessings to find them. Here I am in June when I had a check-up.

Moving On…in more ways than one!

To have my cancer removed from my gums, allowing for margins, I had the ultimate extractions on 6 July 2017…my whole upper mouth! But, of course, the wonderful professional team I have, knew just how to replace what had gone. Use my leg! Good old right hand side leg had better blood supply so, it would be the agreeable donor of a fibula, some flesh and skin. OH alright then!

In recovery time: both in hospital and at home, learning to walk somewhat well with a boot protecting a very big and fleshy wound was hard. I had some physio & head & neck cancer nurse advice from Chris O’Brien Lifehouse before coming home. I had/have a very good GP and of course my husband on 24 hour call who knew I could walk and wanted me to be as independent as I could. Photos are of late July – 2+ weeks since surgery.

I also had (and still do) a very helpful and caring professional …my podiatrist Sean. He came to the house to give my nails some care and to check out what had happened. He keeps on eye on my gait as my walk is OK but sometimes I can feel like I might fall when I pivot. Memo to me: think before pivotting! Here’s where he works. 

One year on…thank you to Sean ( a new Dad now!)

How Do YOU Thank Someone Who Told You “You have cancer?”

In person, with cake. Yes, that IS my modus operandi. I come with little home-made cakes and a home-made card of appreciation. The moment I heard I had cancer held my attention  for a long while and will never leave me. However, even on the phone, from Wagga in NSW south west region, my Oral Surgeon, who had done my second biopsy in 12 May 2017, told me with care, compassion and a practical message!

She told me that she would be referring me to a Dr Clark in Sydney. I had no idea who or where but I took down the details then rang her surgery at Ourimbah  where I had my biopsy. Stef Calladine works in various places in N.S.W. and I am impressed by her work and her patient relationship. When I called the surgery, the lovely ladies there knew and helped me as much as they could, with a name (Dr Jonathan Clark), the place (Chris O’Brien Lifehouse in Sydney) and a phone number. More of the story itself is in the post above.

It was a couple of weeks ago I finally locked in a day when Stef was in and I could go to Ourimbah and what a delightful reunion it was. She has been following my progress professionally with follow-up letters and reports after surgery. I also got to ask the mystery (to me) question. How did Stef, someone who had trained and worked in the UK till a few years back, know to send me to Professor Jonathan Clark at Chris O’Brien Lifehouse? She didn’t but her nurse, Cathy, did! Oh thank YOU Cathy! That was the best decision.

About THE Teeth…when??

It is not a $64 thousand dollar question but I do want an answer of course. From the work done by my amazing and caring prosthodontist and the prosthesis makers at Westmead here I am getting the idea I “may” have something like a set of top dentures added to the upper gum by the end of August. I have to add I am a bit nervous. Gosh, people, I have not had upper teeth for a LONG time. Here’s a series of pics to remind my readers of how much work goes in to seeing I eventually get a smile with teeth!

Is this nearly the end? No. Sorry.

I have no idea of the end…of the treatments and the addition of teeth. I know I have weekly appointments till the end of August. I know this is the start of helping me get teeth inside my mouth again. I will be given very explicit care instructions as this prosthesis will be screwed in so cleaning will, at the least, be challenging. I will be guided by my professional team about the progress. I have no follow-up cancer appointment at Chris O’Brien Lifehouse at this stage. I do believe the little ‘hole’ that appeared under my nose post stent re-insertion  in late May has closed over by itself. Phew. Or that would have meant a fifth surgery.

My prosthodontist talks to my Head and Neck surgeon often as they perform other cancer procedures. I also keep in touch from time to time with an email…and yes, they do know about my blog.

I was pleased to meet people from the local Head and Neck cancer support group recently and join a very active Head and Neck cancer Facebook group too.

 

There is more than one Head and Neck cancer…there are many. Mine was contained in the mouth, not spread and was not HPV. I say I am fortunate. I say that a lot.

Wishing you all the very best who read this.

It’s Dental Health Week here in Australia! Do take care of your teeth and mouth. Only 13% of Australians regularly see a dentist. I am one of those…and yes I had cancer detected but that IS not the norm! Just take heed & have a look here.

Thank you!

Denyse.

P.S. I have an update: Monday 6 August my prosthodontist took the stent out from my upper gums and fitted the wax model of my “teeth to be”. He was very pleased with the fit (all his work, over the weeks of my visits and his knowledge and skills) and we both smiled broadly at the result. In 2 weeks it is planned to fit the FIRST version of false teeth (prosthesis) in my upper gums. But on Monday it was the sweetest surprise for us all:

 

On Tuesday this posts links with Kylie here

On Wednesday this post links with Sue and Leanne here

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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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