Monday 18th October 2021

Women of Courage Series. #73. Gillian Coutts. 116/2021.

Women of Courage Series. #73. Gillian Coutts. 116/2021.

Two years ago… I tentatively courageously launched Women of Courage series on my blog and here was what I said then:

I got this idea from attending the Newcastle Writers Festival in April 2019 and hearing the wonderful Jane Caro speak about her book Accidental Feminists. IF you ever get a chance to listen to or read Jane’s works they are very good.

What I considered after that day and in the days to come is how we women have a tendency to underplay our achievements and whatever else we are doing in our lives. I know this is changing.

This third series of blog posts on Denyse Whelan Blogs to be found here will continue to be published each Thursday into September 2021 when it will conclude.

Here is the introduction to the series.

Courage is strength in the face of pain or grief. It’s doing something that frightens you. We face situations that demand courage every day. These situations provide us with choices, and the way we respond to those choices determines our future. Dayne Shuda

Introducing Gillian Coutts who told me she is ‘just 50’ so I am guessing she was born in that year which was one I know well, having become a first time Mum then too. It was recommended to me by fellow educator and Woman of Courage Tracey here that I ask Gillian to do this story for us. And here she is. Mind you, we had the odd messaging conversation before the story landed. Something very familiar to many of us. On-line learning and also working on-line. From home. I am very glad she did commit her story to email, and with her images, I know the story ahead will be of interest to many. Thank you Gillian.

 

 

What have you faced in your life where you have had to be courageous?

Until I was in my late 30s, I’d been relatively lucky in life.

I’d had an interesting corporate career, come from a great family, I’d married a good man and become an instant step mum.

I became a bio-mum when I was 38, and a year later was diagnosed with breast cancer.

Lots of people at that time would have said I was courageous about the treatment and balancing work and family, but to me I was just doing what you had to do.

There was no other choice.

But what I did next was – in hindsight – more courageous.

There’s something about those experiences that helps you see life is short, and there’s not much point in living the life others expect you to, but rather, taking the path that you want to.

This for me was about finding an alternative career.

I’d been a typical corporate ladder climber, and while I’d started out with a big heart for people and social justice, I’d ended up managing divisions of consumer goods companies which seemed to be more about making profit from people buying things that they didn’t really need.

My heart was definitely not in that.

So when my role was made redundant a few years later, I decided not to take another “job” for two years.

It was risky as I’m the primary bread winner for our family, but I knew there had to be another way.

So I stitched together a “portfolio” of things – consulting, becoming a partner in Potential Project here in Australia, board roles.

The only criteria was that I had to work with people I loved doing things I enjoyed.

I also had to say yes to opportunities if I felt scared (but not if I didn’t want to do them).  So that took courage.

The thing that really took courage though was when my friend and I started to join a folk rock band.  That was really pushing the boat out there!

 

How did this change you in any way? Please outline further if this has been the case.

Joining the band is a great example of the challenges I felt all the way through the last ten years, in all the things I’ve tried.

It takes courage to dream of doing something that you’re not good at… yet.

It takes more courage to book the venue, show up and play when you know you’re still not that good… yet.

The funny thing was that when I joined the band, I thought maybe I could be one of the lead singers.

It turns out that my voice wasn’t that good.  I was relegated to be one of the back-up singers and played the keyboard, while two great young singers took the lead.

Then I wasn’t that great at the piano, and the bass player decided he’d be better at keys, so I learnt to play the bass too.

Then the lead singers left, and my friend and I looked at each other and decided we had to go for it.

So we got some singing lessons and have slowly worked our way to the front.  We all take it turns to lead now, and have great harmonies too.

It’s been a lesson for me in continuing to turn up, even if you’re not perfect.

It’s taught me an enormous amount about performing in all aspects of life.

If you are content in yourself, and not too precious about how others see you, you can help other people have a really great time.

Even if you’re not the next person likely to win Australia’s Got Talent!

 

Is there something you learned from this that you could recommend to help others who need courage?

Letting go of the need to be perfect is so liberating!

It is also infectious.

People have loved coming to see us perform because they can feel free to sing along and just have a good time.

Many have come to tell us that they’ve also been inspired to pursue their own “not yet perfect…” kind of project and share their pride with us.

 

Do you think you are able to be more courageous now if the life situation calls for it? Why is that?

I think I’ve realised that what is most entertaining and engaging is when you as a performer are engaged, present and having fun yourself.

Sure, you need a base level of talent to not completely embarrass yourself, but fully committing to the present moment is a joyful feat in itself.

It’s rare and people appreciate it.

I’ve had to give a lot of talks and run programs for leaders all over the world now where I would have previously (and still sometimes do) have a massive imposter syndrome moment.

And then I remember that’s human, I know my stuff well enough and just commit to the moment.  And 99% of the time that’s more than enough.

 

Is there any message you would give to others facing a situation where courage could be needed?

When it comes to pursuing your dreams, think less about how others will see you, and more about what you want to do for others.

Compassion is an amazing catalyst for courage.

 

Thank you so much. Living life to the fullest with all its ups and downs yet finding a balance between work and family AND being yourself.

Denyse.

Social Media Connections for Gillian.

Blog/Website: www.potentialproject.com/Australia, www.vegasnerve.com.au

 Twitter: @GillianTPP

Facebook: https://www.facebook.com/gillian.coutts.7

LInkedin: https://www.linkedin.com/in/gilliancoutts/

 

Book: One Second Ahead – Enhance your performance at work with mindfulness

Joining with Natalie here for Weekend Coffee Share.

Copyright © 2021 denysewhelan.com.au – All rights reserved.

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Questions. 31/51. #LifeThisWeek 94/2021.

Questions. 31/51. #LifeThisWeek 94/2021.

I am a question-asker.

I tend to ask a lot.

I am also an answer giver too.

However, I remain naturally curious and so, as a result have asked a LOT of questions over my 71 years on earth.

When I was seen by my head and neck cancer surgeons on 18 May 2017 I may not have had many questions because to be honest I was in shock as I had only learned of the diagnosis,the day before.

So, in the weeks that followed I found I did have specific questions, that I did not want to try to navigate on-line and my husband and GP did not have knowledge, so one of the kind surgeons answered them for me after I sent an enquiry to my head and neck surgeon’s office. His words helped me so much and reduced my worries.

I also found out then:

Do NOT be afraid to ask questions. There are no SILLY questions.

It’s now over 4 years since I was that very worried woman in a clinic room at Chris O’Brien Lifehouse, where the head and neck team met us: me the patient with B my (now) carer.

August 2017

I have, over the years, also had the help of a psychologist to get my somewhat faulty  thinking and ideas sorted. I was not a 100% emotionally well in the years 2014 into early 2017 but I am also a problem solver. However this was one problem I could not solve by thinking my way through. I needed to both accept the emotional upsets I had and why along with the BIG life transitions I was coming to terms with. I have written about some of those experiences in past posts.

Before I continue. Last year, this head and neck surgeon from Adelaide tweeted his explanation for cancer. I have always felt there is an element of ‘blame’ attached to some cancers. These words resonated. Thank you @guylrees.

 

This year I was sent a copy of a book which I said I would review. There was a throwaway line by me when I saw its title via social media when I said to the publisher, send me a copy and I will review it. Exisle Publications were serious. They did.

I have read the book by Dr Toni Lindsay and it answered even more questions for me.

  • Questions I did not know I even wanted answers for.
  • That is the thing about a cancer diagnosis, sometimes it takes a long time to determine what you need or want to know next.
  • This then is my summing up of the book: from a Head and Neck Cancer Patient At Chris O’Brien Lifehouse.

I have never met Dr Toni Lindsay but I do know of the many other professional services that are offered where I had my surgeries.

 

The Cancer Companion: How to navigate your way from diagnosis to treatment and beyond by Dr Toni Lindsay.

My Views As a Cancer Patient.

  • This is a well-written and set out guide, and its name suggests it can accompany a person (cancer patient, family member, carer) throughout the cancer experience.
  • It’s easy to read, and divided into sections:

Part One: On Treatment.

  • And then it was cancer
  • Normal
  • Finding your purpose and meaning. Part 1.
  • Preparing the treatment and having a plan
  • Chemotherapy
  • Radiotherapy
  • Surgery

I identified strongly with ‘hearing you have cancer’ as it still comes as a shock even though I had guessed. Of course, for me, like all, there were fears and worries. Lots of days when I know I would be doing something, and then it would hit me like a punch. “I have cancer”.

So, what I got from this part, as someone who remembers how it was, is that all is perfectly within an expectation as a newly- diagnosed patient.

Having a plan helped me but the plan often came in the form of a check list from me, to prepare for trips to Sydney where I would need to have surgeries, treatments at the prosthodontist and for the first year, my husband would need to drive me and stay somewhere close by while I was in hospital.

Even though we no longer lived in Sydney where everything I needed for my on-going treatment, we felt fine with the drive, and sometimes a stay overnight. My husband bore the brunt of times waiting…sometimes visiting our family, other times going for long drives until he heard he could pick me up.

We are also fully retired (aged over 70) and so making a plan was relatively easy as we did not have to take work and family priorities into account. There is quite a bit in this part for carers too.

Part Two: Off Treatment.

  • Finishing treatment
  • What if it comes back?
  • Finding your purpose and meaning. Part 2.
  • Why is everyone behaving like I am back to normal?

My reactions to what I read here were as if Dr Lindsay was in my head!

It did help ‘normalise’ my thinking and my progress.

For that I was grateful to have confirmation from someone professional.

I have a husband who is a trained counsellor and his help was good in that he could sometimes ‘calm my farm’ as they say when my emotions when a bit awry.

I am now, almost 100% able to do this for myself.

Ah. The advantages of time passing and experience as well as cancer free results at surveillance visits.

 

Part Three: Living With Advanced Cancer.

  • Living with advanced cancer
  • Finding your purpose and meaning. Part 3.
  • Planning and decision-making (even if you don’t need it!)

I read this section with feelings of sadness because I know of friends with head and neck cancer, and other cancers, who are living with advanced cancer.

I do know, however, that if there can be others support systems for example, psychologists and/or palliative care team with experience of helping people through, the prospect of what MAY lie ahead could feel less fear-based.

I would highly recommend not only reading this section but acting upon the help offered too. 

 

Part Four: The Psychology Part: How Can I Manage All of this.

  • Mood vs treatment
  • Anxiety
  • Sleep
  • Appetite
  • Fatigue and exercise
  • Body Image
  • Relationships and sexuality
  • Working
  • Being present
  • Being grateful
  • Managing other people
  • Pain

I have a great G.P. He started being my G.P. about 6 weeks before my diagnosis in May 2017.

Like my husband, he has been what I call a ‘cheerleader’.

Someone in my life who helps, encourages and supports me.

In the various times when I have been worried and scared, and this was prevalent a LOT in the first year, he was a voice of reason and reassurance.

I also have a professional team in Chris O’Brien Lifehouse and at Westmead Oral Sciences who I can call or email. Their help, at the other end of the phone after I have sent a photo or text has been exemplary.

In turn, all of the above has helped me see my way through.

Having a rare cancer: both statistically and type, I often found “I” became and still am, the expert in my mouth and its care. I

have learned a lot from those who helped reconstruct my mouth, along with my local dentist, but from my 4th year of recovery (about this time in 2020) I became the ‘one who knew’ most about my cancer and my recovery.

Some Final Thoughts.

This is a section in the book…

and I will add mine.

Knowing how I felt at the beginning of my diagnosis and how hard it was to concentrate with the spectre of an 11 hour surgery ahead of me, I could not have contemplated picking this book up and reading it.

I did ask my husband though and he says it would have been ok for him to have it at that stage.

Now, as I review my reactions and responses to my cancer in over 4 years, I would have been ready by about a year in.

That was for me.

Oh, and about the red balloon on the cover. It took me a while to find out about its significance. Dr Lindsay uses the balloon the illustrate how when holding a balloon on a string, it may occasionally pop back onto you, just like the occasional anxious thinking about cancer. In other words, the thoughts do come and go but they are not there forever. Or indeed they can be batted away. No longer controlling us. 

Others may see it differently.

Thank you to Dr Lindsay and those at Chris O’Brien Lifehouse who support patients and families and carers on the psychological path of a cancer diagnosis.

Thanks too, to Exisle Publishing for the book. No payment was made to me for this review, it was the gift of the book only. I am a truth teller and this is my review.

I give my permission for Exisle Publishing and Dr Lindsay to use my words within this post.

Denyse Whelan.

Blog Disclaimer:

My stories and photos along with suggested links and websites must not be seen as medical advice.

I write this blog from my experience as a head and neck cancer patient.  Denyse Whelan. 2021.

Link Up #251

Life This Week. Link Up #251

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. It’s a kind connection I value as a blogger! 

* 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, sales and any that are overly religious or political or in any way offensive in nature.

* THANK you for linking up today! Next Week’s Optional Prompt: 32/51 Remember

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Cancer: Patients, Family & Carers.#ShareYourSnaps #6. 30/51 #LifeThisWeek. 91/2021.

Cancer: Patients, Family & Carers.#ShareYourSnaps #6. 30/51 #LifeThisWeek. 91/2021.

Cancer does not have a timeline.

It can just appear.

Often times there is NO reason nor cause.

Many who have been diagnosed with a cancer with known risk factors but none apply to them, will be puzzled.

I am one of those but I have also learned to let go…because as my wise husband says “in the overall scheme of things, does that matter or help?”.

This month, on the blog I am focussing on cancer: head and neck cancer, because it is the one I know best.

I WAS excited to announce a community-held event as a fund raiser for Soup For The Soul at my local cafe but, nothing can happen so, I changed to a VIRTUAL Soup For The Soul Fundraiser and this is my POST where there is a LINK directly for donations. Thank you in advance! 

It also is the month when World Head and Neck Cancer Day is held: 27 July.

This year, because of Covid Restrictions a lot of what we took for granted in getting our messages out there to the community have changed. But my blog is still here.

Sadly not much is happening fact to face right now, and I post this image when we were very hopeful we would be able to take the head and neck cancer message to Canberra. But again, that has been postponed.

This Sharing of My Snaps is About a Number of Subjects.

See below for blog disclaimer. 

Cancer Help.

There is, in Australia, a Government website here . 

Of particular interest to me is to find and share more of the cancer I have. Try it if you need to find out more.

https://www.canceraustralia.gov.au/affected-cancer/cancer-types/head-neck-cancer/what-head-and-neck-cancer

Head and neck cancer occurs when abnormal cells in the head or neck grow in an uncontrolled way. These cancers usually begin in the squamous cells that line the inside of the mouth, nose and throat.

Head and neck cancer is 1 of the 10 most common cancers in both men and women in Australia. I have heard it is rare. However now I realise it is not well-known at all. Perhaps my descriptor needs to change.

What are head and neck cancers?

Head and neck cancers occur inside the sinuses, nose, mouth and salivary glands down through the throat. Although these cancers are different, they are treated similarly, so are considered as a group.

It is estimated that there will be 4414 cases of head and neck cancers diagnosed in Australia in 2021. These figures include cancers of the tongue, gum, mouth, salivary glands, tonsils, pharynx, nasal cavity and larynx, but not cancers of the lip.

The five year survival rate is approximately 64.7%.

source: https://www.cancer.org.au/cancer-information/types-of-cancer/head-and-neck-cancers

 

Cancer Council has sites throughout Australia too.  Ours in New South Wales is found here. I have booklets from my local Cancer Council shop at Erina Fair to help me and anyone else with a cancer. These books are free and I highly recommend them.

There is the second volume of which is a series of stories co-ordinated by The Swallows on Facebook : found here.

The Swallows: Booklet

Other information about head and neck cancer found here too:

Julie McCrossin AM, Australian Ambassador for Head and Neck Cancer Australia has copies. Tell me in the comments if you would like one.

Beyond Five. 2018. Now HANCA. Julie McCrossin AM holding a radiation mask. Nadia Rosin CEO & Me.

Marty Doyle, fellow Head and Neck Cancer Australia Ambassador, also wrote this book about his experience with head and neck cancer. He is going well some 17 years post his diagnosis.

I also bought a compilation of cancer stories directly from the author as I wanted to read more stories of others’ going well post-cancer. And I include some other books which have helped me.

Now…some more information can be found here at Head and Neck Cancer Australia (formerly Beyond Five) where I am an Ambassador.

I have taken part in a video series on nutrition, shared my head and neck cancer story on this site, and that of Chris O’Brien Lifehouse where I had my surgeries.

For more information about the special aspects of treatment for those with any cancer, go here to Chris O’Brien Lifehouse. This is in Sydney and is a private hospital specialising in comprehensive cancer care. That is, all under one roof as was the vision of the late Professor Chris O’Brien AO. His daughter, Juliette O’Brien was a recent Woman of Courage. 

And now to this information and more from me, about cancer progress and living with the results of head and neck cancer. My posts are here. 

 

The book I am reviewing. Written by a Psychologist from Chris O’Brien Lifehouse.

Review is coming soon.

This story: The Big Hug Box.

I have written about my connections with Lisa Greissl who founded the Big Hug Box in 2018. She too, was a patient at Chris O’Brien Lifehouse and in recovery wanted to do something to both help cancer research (hers was a very rare cancer) and to give back something to those who saved her life. She knew, in recovery, a BIG hug was always appreciated but not everyone can give or get one in person as they recover from or go through cancer. Find the Big Hug Box here.

Lisa’s idea has moved forward and there is much happening locally in the Newcastle region of N.S.W. Companies raise funds to share Random Hugs of Kindness boxes to Cancer Centres in some states and cities. The latest news is found here. I got to know Lisa personally when I offered to make bookmarks for inclusion in the early versions of The Big Hug Box. I must have donated over 400. I also saw someone I know who received a Big Hug Box and she saw that she knew who made the bookmarks! Lisa has also shared her story as a Woman of Courage.

Whilst this is a much more wordy post for a Share Your Snaps, I wanted to give the space to what has helped me in terms of cancer so that readers and bloggers here may have better ideas and reference points.

This is an Australian based blog and all of my links are to places within Australia, other than The Swallows in the United Kingdom.

There are many places and site for help in the U.S.A. where Oral Cancer is often mentioned separately to head and neck cancer. World wide, the associations and professional bodies relating to all cancers do all they can to improve outcomes for patients.

And, I share my story learning to eat again here: from Head & Neck Cancer Australia. Made February 2020 just before Covid shut things down.

Thank you for reading and commenting.

Denyse.

Blog Disclaimer:

My stories and photos along with suggested links and websites must not be seen as medical advice.

I write this blog from my experience as a head and neck cancer patient.  Denyse Whelan. 2021.

Link Up #250

Life This Week. Link Up #250

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. It’s a kind connection I value as a blogger! 

* 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, sales and any that are overly religious or political or in any way offensive in nature.

* THANK you for linking up today! Next Week’s Optional Prompt: 31/51 Question.

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Leaving 22/51 #LifeThisWeek. 67/2021.

Leaving 22/51 #LifeThisWeek. 67/2021.

When I saw this optional prompt, my mind went to writing more about “leaving my role as a school principal” and then I thought, I have already written about that here and here.

Sometimes we can leave without knowing it will be the last time we do that.
I find that a challenge in some ways. Sad, but true.

This is my late mother on Dad’s 83rd birthday making sure there was a cake for celebration. She could no longer make one but a store bought one sufficed and my daughter and her kids, along with my niece were there…11 January 2007.

We did not know how unwell Mum actually was until the following couple of weeks which were a quick succession of trips to ED, back home, admission to private hospital, MRIs & more and then….a diagnosis. My mother had secondary brain tumours with within 2 months of this photo she died. She, along with Dad and her family and her treating doctors agreed ‘no surgery nor treatment’. We never did know the primary source.

Whilst we, her family, did expect that her health would deteriorate rather rapidly, it was always her wish to “stay at home” but she admitted to Dad, that she knew this was all too much for him as she became bed ridden  and incontinent and she agreed with his decision, made with her long-time G.P. that some kind of palliative care at a local private hospital would be the best for her.

So, Mum left, in an ambulance that Friday morning and was admitted. Dad and I agree NOW  that the Friday was a poor choice – no proper staff who could make decisions about her room and her care until Monday – but he too was exhausted.

She left here:

Then when she died it was from a room here: I can actually guess which one, but I won’t point it out. She died in the latter hours of Monday 5th March and Dad had been told to go home. She waited till then.

 

Leaving to meet a new sibling! As grandparents, back when we lived close to our family and were caring for the grandchildren we had no more privileged role on a special day in 2013 than to collect a grandson (from school) and granddaughter (from pre-school) to take them to meet their parents…and their new sibling…

 

And preparing to leave Sydney took a lot of doing.

The house we lived in had been ours brand new from 1998 onwards. It did though date itself over time, and as we had decorated and changed room configurations. Because my husband is one very talented renovator, he began the process in 2013 even though we were yet to firm up that decision…which in its own way had to be made at the right time…and it was in 2014..more on that here.

 

I wish I had known just how much leaving our home of many years,  our family, friends, my career ….and so on, would affect me emotionally. But…I know now that leaving as we did, affected me later, as my psychologist in 2016 told me ” emotions/feelings take longer than the events and decisions” to catch up with us. More about that in this post. and here too.

Fast forward to leaving hospital after my BIG cancer removal and mouth reconstruction in July 2017. What a happy day to be leaving…surgery done, lots of recovery to come and time….but LEAVING!!

And I cannot finish a post for 31 May with leaving a small tribute of love to my Aunty as it was her birthday. She would be 98 today.

Known as Poppy. Much loved aunt and great aunt. She gave us “the world”…even though she did not have much, it was always with love.

Have you found leaving is hard or is it a pleasure?

Denyse.

Copyright © 2021 denysewhelan.com.au – All rights reserved.

Link Up #242

Life This Week. Link Up #242

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. It’s a kind connection I value as a blogger! 

* 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, sales and any that are overly religious or political or in any way offensive in nature.

* THANK you for linking up today! Next Week’s Optional Prompt: 23/51 Motivate. 7 June.

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Telling My Story. Chapter 24. June 2018 – 2019. Part 2/2. 56/2021.

Telling My Story. Chapter 24. June 2018 – 2019. Part 2/2. 56/2021.

The backstory first:

FOUR years ago now ….I thought it was time, seeing I had a blog, to start writing my story. It was on advice from a blogging friend, now published author that I did. Then, for a long time I did not. Because cancer was diagnosed.

Nevertheless, I eventually returned to the story and now I am at Chapter Twenty Four. Telling the story in two parts. Today is Part 2.

So, in keeping with my ethical approach to all things, I am making the chapters about MY recollections to various changes in life for me, and us, and life as we knew it. I hope I can continue sharing the story without any intentionally negative or hurtful references to others who are in my life as friends and family members. All of the stories to date found here.

And with this chapter, a recent photo…taken overlooking the harbour at Dobroyd near where I grew up close to Manly N.S.W.

Tah Dah! This Chapter’s 2nd Part IS the last….for now…and into 2021 of Telling My Story. Only took 4 years!! 

The overriding memory I have of this period in my life is change. Change for the good. Change in my outlook as I moved further away from cancer surgeries and recoveries towards L I F E as I wanted to have lived it in retirement but far too many things were in the way. The series year of 2015 and 2015 tell more.

So, as best as I can, this rounding up of Part 2, thus ending my publication is going to have more photos and memories along with, fewer words.

Are you ready to come along?

Early April 2019.

As my confidence shot up and I was prepared  drive to places and see things I wanted to see and experience, Newcastle Writers Festival headed the list. A conversation (longish on twitter) with author Trent Dalton ended up with me LOVING Boy Swallows Universe and he would be there on the Sunday I was. However, I had booked to hear my long time friend & author Rick Morton speak on his first book One Hundred Years of Dirt and have a catch up if I could. I met my blogging friend Lisa for early/late lunch and we went to Rick’s session. I had also booked to see Jane Caro speak on her ground  breaking book Accidental Feminists which I had devoured. I hadn’t see Jane in real life but we were well known to each other from social media.

What a day!

The upshot.

This.

But wait there was more…I was stoked for this resurgence of my social life. Admittedly I was very tired and it was a challenge to find something to eat because of my mouth…but I was out there again. Yay. I also needed more than ever to calm and find peace within and I turned always to my art desk to find or create a new project.

Late April, Mother’s Day and into  May.

During the April school holidays, which coincided with Easter and one granddaughter’s birthday, so we entertained with great delight..always love seeing our family.

My daughter and I met at Berkelouw’s for Mother’s Day brunch morning tea and we rarely get ‘two of is catch ups. So that was awesome. My 2 year anniversary of head and neck cancer diagnosis was coming and my husband and I celebrated at one of our favourite places for morning tea. Then he said “time for your apple watch isn’t it?” YES. Please. Thank you. I had just joined a moving/walking challenge with the Department of Education so that was going to motivate me too.

About An Idea: Women of Courage.

Having read Jane’s book (listened via Audible too) and then seeing her interviewed about the findings and that women, are/were in general and in life, doing so much unsaid, unpaid work that it was women who suffered more in latter years because of separation/divorce settlements all favouring men. Her concern which is serious and major, and verified over time is that women, in Australia, over 55 are becoming the highest number and fastest growing cohort of the homeless.

Now, whilst I would like to have fixed all the issues Jane raised, and of course I could not, I did have this idea. It seemed to me that we women might feel empowered somewhat if there was a way to share some of our stories…as I saw them, of courage. That was it.

Women of Courage.

I knew many of there people, but would they be prepared to share something about themselves along this line. I set no targets, I asked politely, and received no for an answer with respect. I kept a list of those I approached on line with my proposal and by the time my launch time arrived I was ready with a great set of responses.

The first post, was mine, via introduction, and then it was time for Sam to share her story,

Ready steady….Women of Courage

In the weeks, then months that followed I pressed publish on  24 personally named posts and  one anonymous post in 2019.

I decided to stop sharing before December as I knew there would be fewer readers and then was ready to kick off again with Jane’s post

and onto 25 from named sources and 4 anonymous ones until it closed as series in September 2020.

This year, I am re-launching soon. 2021 series. From mid May…I like that time of year! Here is where all of the Women of Courage posts are.

June, July, August…..2019.

  • I can remember we had visitors for school holidays, my husband was unwell for some weeks with the flu even though the diagnosis took a while, I continued with my trips back and forth to Sydney to see the Prosthodontist less regularly but still needing reassurance and care…

 

  • I drove to Sydney in June and stayed overnight to see Vivid Light Festival from the harbour and to go to an event to celebrate the great work of the late Professor Chris O’Brien at the cancer care centre named for him. It was on this occasion I realised how hard it is for a post-surgery me to find food to eat unless I bring my own. I still grapple with this today.

 

  • I also made a quick trip to near where we used to live after a Westmead appointment and had an impromptu catch up with my daughter and granddaughter and a ride on the new-t0-me light rail.

 

  • I did quite a bit of cooking – as usual – because I need to cook for my needs. I also joined in the Soup for Soul Fundraising for then Beyond Five with my local Central Coast Head and Neck Cancer group with batches of small cupcakes. We did not know of course, that Covid, the following year would shut down all such gatherings, even restricting visitors to hospital to one for a patient or even no-one could accompany an adult.
  • I met with my local federal M.P. Emma McBride to get her support for World Head and Neck Cancer Day on 27 July. That is the date for it world-wide. I also shared more each week leading up to the date via my blog and social media in my role as an Ambassador.

Braver and braver and being prepared to say YES first rather than no continued to increase my ability to not only do hard things but to see them as small accomplishments building upon each other which is at the heart of exposure therapy.

Some Highlights: June to November 2019.

  1. Staying solo overnight in Sydney: to attend Vivid and then a conference the next day just as a supporter
  2. Driving to Hunter Valley Gardens to view what I had read much about
  3. Deciding that I really wanted to celebrate being 70 later in the year
  4. Getting great cancer checks with all GOOD news and not being as fearful of cancer’s return
  5. Becoming more interested in sharing what I could with the wider community: resources I made to The Big Hug Box and to Arterie at Lifehouse but also stopping when it became a little more of an overload
  6. Planning that I would like to invite blogging and social media friends to a morning tea to for me…turning 70 and being vulnerable enough to send invitations…Everyone actually said YES but on the day for a range of reasons sadly 3 could not come.
  7. Dealing with disappointment in a less personal way.
  8. Learning that living with I.B.S. and some incontinence might be a package* that came with ageing…and making allowances for myself with that. *In May – August 2020 I found a solution via surgery I was too scared to ponder in 2019 and I am well.

On Turning 70. 

Before my 70th Birthday, I drove to my granddaughter’s school (and daughter’s school)  to attend their Open Day. Loved celebrating gratitude for my life here:

  • Rather than dreading another zero birthday I celebrated with gratitude.
  • I visited my father a few days after my birthday to have cake and coffee with him and my brother
  • My actual birthday was the Saturday when our family came for lunch. Our daughter and her adult offspring, one with partner and her youngster and our son with his four.
  • My husband and I did the catering and our daughter made a cake.
  • It truly was a celebration of LIFE and to have this with those who loved me (vice versa) made it so special
  • A few days before I met with my social media/blogging friends too.
  • I received, unexpectedly, cards, flowers and kind gifts.

Loved this big surprise.

Lovely portraits of our 8 grandkids

 

Christmas 2019 Was Different.

After the loveliness of my birthday I was well-satisfied but getting more brave in my continued intentions to push myself further. This was when I agreed that we (husband and I) would drive to Sydney on Christmas Day – something I had always vowed would be too stressful) and enjoy a family lunch. Our son said to drop in on the way down as he would have his kids on Christmas morning. All good.

Unfortunately to his disappointment most of all, my husband had over-exerted himself the day before finishing off some outdoor work and was exhausted and completely unwell so I made the trip solo.

I remained determined to do this though on behalf of us both and to see the family. I even managed to  eat some Christmas lunch. Yay for being careful but also being adventurous.

Onward into 2020 with Gratitude.

I accepted this would be word for 2020.

I had already done a 30 days of gratitude challenge leading to my 70th Birthday.

I knew finding something to be grateful for each day was a good thing to do for my health.

Of course I did not know ahead of this just how much challenge 2020 would bring!

 

I actually blogged 2020 in 3 parts last year  for Telling My Story because I wanted to remember it well.

Here is the link to each post.

Part One 2020

Part Two 2020

Part Three 2020

Thank you for following my story. See how my avatar has changed in that time.

 

This is the ‘last one’ for quite some time.

The weekend before this post went live, I finally had all the printed copies of each post put in order, in two folders. They are evidence of My Life…as told via Telling My Story 1949 —-> and even if no-one else other than The Author reads them, I am so glad to have persisted!
They are located in the bookshelf along with other life records: my career in education, my cancer story and updates and family tree info.

Warm wishes,

Denyse.

Joining with Natalie here for Weekend Coffee Share.

 

 

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Telling My Story. Chapter 24. June 2018-2019. Pt 1/2. 52/2021.

Telling My Story. Chapter 24. June 2018-2019. Pt 1/2. 52/2021.

The backstory first:

FOUR years ago now ….I thought it was time, seeing I had a blog, to start writing my story. It was on advice from a blogging friend, now published author that I did. Then, for a long time I did not. Because cancer was diagnosed.

Nevertheless, I eventually returned to the story and now I am at Chapter Twenty Four. Telling the story in two parts. Today is Part 1.

So, in keeping with my ethical approach to all things, I am making the chapters about MY recollections to various changes in life for me, and us, and life as we knew it. I hope I can continue sharing the story without any intentionally negative or hurtful references to others who are in my life as friends and family members. All of the stories to date found here.

And with this chapter, a recent photo…taken overlooking the harbour at Dobroyd near where I grew up close to Manly N.S.W.

THIS post is the second last in the series. Part Two is in a week’s time. Thank you to all who have been reading and commenting on my recent posts about my life since head and neck cancer. I appreciate each and every one of you and your kindness. It helps me understand my need for connection and blogging does that for me. Warmest wishes to you all. Denyse.

 

June into July 2018.

About my mouth.

This is the month after what I hoped would be the final reconstructive surgery…(still is)….and it was winter, busy and I spent even more time, alone (happily) in my red car, driving BACK and FORTH to Westmead Oral Sciences…because…. T E E T H!

Obviously healing has to take place, and the work of this next stent, the one to push my top lip out more needed lots of T I M E.

You know, that thing you have to be P A T I E N T about when you are one!

During the visits to the prosthodontist, which could vary in time ‘in the chair’ from 2 to 4 hours, I listened to audio books at the boring times of having 2 lots of hands in my mouth…and used to ‘fiddle with’ my bracelets, or even a small crystal. I was not ever nervous but my boredom could lead to anxiety and so it was best I used strategies of distraction and relaxation. I was always very tired after my day spent at Westmead and soon learned to give myself a day off afterwards.

Nevertheless, I knew that my prosthodontist was working at all he could to get my new upper prosthesis prepared for when my mouth was.

Daily Routine Helped.

As I had started with photo taking in late 2017 for a daily outfit shot, and then going somewhere for coffee, this became a given as part of my routine to see me dress well, and engage with the wider world outside home. I still do this, no longer with daily photos but it is embedded in my self-care strategies.

Life went on.

In between times, I did not sit around.

Actually I do not doing sitting around very well.

I still had my daily routine of an outfit photo and usually went out for coffee. I went to view nature and I became increasingly interested in helping with spreading the word of head and neck cancer. I also found The Big Hug Box and offered to make bookmarks and loved using my art for good. I ventured an idea to the local library – can’t recall which month but it was with a view to me running a mindful mandala making course.

I even put a ‘how to’ on the blog. Teacher me was re-emerging.

School Holidays. Visitors. 

It was a treat to see our grandchildren when their parents could arrange a visit and on one occasion we had a late birthday celebration. I made sure I had some art and craft for the four of them to do and we spent a very pleasant day in the winter sunshine.

I continued to be out and taking photos and it was good for me to re-visit places where I held special memories of seeking solace and comfort.

 

Head and Neck Cancer: Sharing The News.

As I was someone who had no idea of this rare cancer when diagnosed, I wanted to make others aware, but I also know my Professor Jonathan Clark and others had begun Beyond Five to do just that. Finally, as July approached and with it, World Head and Neck Cancer Day on 27 July I swung into action. Beyond Five sent me some ribbons and brochures and I made contact with my local federal M.P. Emma McBride and she visited us at home to find out more. Emma remains interested in sharing. I also approached our doctors and dentist with a view to sharing my “wellness” and asking them to display information. It seemed like I wanted to give back.

I did.

Thank You: No Words Are Enough.

 In the year since I had been diagnosed, after my dentist has removed the bridge in April 2017, and I had the biopsy done by the oral surgeon in May 2017, I really wanted to share with them how I was. So, I did. In two personal visits. I have done this once more to the Oral Surgeon’s since and of course I see my Dentist each 6 months.

World Head and Neck Cancer Day and Meeting The Central Coast HNC Support Group.

My M.P. had written an article about me and head and neck cancer and it was within days of that, I was contacted by Lisa Shailer, from Central Coast Cancer Centre, who looks after newly diagnosed head and neck cancer patients. She invited me to the first Soup for the Soul event at Gosford hospital’s Cancer Centre and that was where my involvement with the local group commenced. It was also the first time I had met anyone else with a head and neck cancer.

August 2018. How LONG?

On 6th August, as my patience was really, really wearing thin …to get this upper prosthesis, I celebrated our daughter’s birthday with a S M I L E.…and the race for this to be ready and in my mouth began. I was so over it. I thought this would be such a change for me when it happened, I even made up a list of what crunchy foods I would try again. (Dear reader…it was not how she thought it would be)

After more trips up and down the M1, I sensed that 21 August was to be THE day and dressed up  a little bit more. It was. The day. It felt weird and good.

I smiled for a LOOOOONNNNNGGGG time.

First time I smiled….

 

After an adjustment from my prosthodontist.

September into October 2018.

I Could Not Stop SMILING.

Even though I had “teeth” screwed into my upper jaw in August, there were still quite a lot of adjustments to be made to the prosthesis by my prosthodontist at Westmead so that meant more trips to him. He was also making a bottom partial denture of a molar on each side, to clip onto my remaining 8 natural teeth to have better biting and chewing.

I sent a photo of me to my head and neck surgeon and he was amazed at the outcome too. So cool. I had my check up and he was so happy for me as were the other people who were part of my surgeries and healing times. I met with Nadia, CEO of Beyond Five as a potential Ambassador, and on the same day said hello and thank you to Gail O’Brien, wife of the late Professor Chris O’Brien, for her husband’s vision for his one-stop Cancer Care Centre, Lifehouse.

What it was not.

No way does it replicate my own teeth. However, I took some time to get used to that as well as speaking because my mouth was now more full of ‘hardware’. Eating was tricky – and still can be – as different foods required more chewing than expected and others were just too sharp or crusty for me to be able to manage. I also found (and find) I need something slippery to help the food go down.

BUT I had my SMILE back. And that was so good.

I was invited to share my story  at the Central Coast Head and Neck Cancer Support Group and used my long lost power point and Uni tutor skills to do so. It was well-received.

I visited family with greater confidence. Trips to Sydney were ones where I once only had emotional capacity to deal with the treatments but now I was getting more brave and doing hard things.

I met people for a long awaited catch up. I saw Dad more. I visited places where I had grown up. It was GOOD to be out and about and not all about head and neck cancer. I went to a Look Good Feel Good self care workshop but was a little disappointed that its relevance to me was little. Understandably my cancer it rare, but the 90% effort on the day was placed with those with hair loss from chemo and in general were for breast cancer survivors. I appreciate that my cancer is not visible either.

November into December 2018.

Invited to become an Ambassador for then Beyond Five, now Head and Neck Cancer Australia. This was a huge honour and so good to know I could be helpful using my education background and my personal experience of being a head and neck cancer patient. I met with the CEO, Nadia and Inaugural Ambassador Julie McCrossin at Chris O’Brien Lifehouse.

Back to schools!

I was invited to my granddaughter’s grandparents’ day and I went. I would not have envisaged doing this in the previous few years but handling my head and neck cancer recovery encourage me to use my new skills of confidence and greater resilience. It was great. I loved being back in a school. Then I visited my daughter at her school. Very proud to see the library she started from Day One of that new school.

Because of a blunder made in 2003 on my Service Medal, by the NSW Dept of Education at my retirement (when I had to due to work place issues and no chance for medical retirement) I tweeted about it once and my principal friend John Goh noticed and he retweeted it and the NSW Dept of Education Deputy Secretary saw it, and emailed me “we can fix this Denyse”….and the story of that is told here. So good to have my career recognised properly for me.

We hosted Christmas.

We had not had our family gather with us for Christmas for quite some years. Then for 2018 our daughter and her kids suggested coming to our place as they were mid house move. Again, bravely, I said YES and we were delighted to do so. I also had another Santa photo taken and when asked what did I want for Christmas I said “I already have it, I am cancer free and well.”

What Would 2019 Bring?

January 2019.

Birthdays!

Always birthdays first…my Dad…95

Then our son 40

And our grandson 18.

I didn’t see Dad on the day but had photos sent. Our son and his four kids came for a lunch and we made sure there was cake and candles. Our daughter had an 18th Birthday family lunch for her boy at her new place and we were delighted to attend.

We had not driven down the way – north western Sydney – since we last lived there and the changes are extreme. Former paddocks and dairy farms are cheek by jowl housing and that is the way these days I guess. Also is a reason traffic wise, why my husband was glad to be out of Sydney.

February 2019.

Busy month to begin with the first meeting in 2019 for Central Coast Head and Neck Cancer Support Group where M.P. Liesl Tesch, former Paralympian addressed us, sharing her story.

I continued to have check ups at Westmead for my mouth. In January of 2019 the upper prosthesis was removed – it is attached by 5 abutments (tiny screws) that are in my reconstructed jaw, for minor adjustments. As you may imagine, it is a challenge for something to fit well (and perfectly) so it meant trips to Westmead for this. As time went on though, my physical care of the prosthesis with waterpik and micro brushes – getting debris away from the abutments and gums, it has not needed removal since then. In fact, I can barely believe how well I have been able to maintain this because it’s something quite new.

I also found out, that the pain I often have in various parts of my mouth inside is all part of the body getting used to what is in there. After all, it’s got my leg bits inside. My team and being published as a story on Beyond Five.

My husband turned 70. He is the original no fuss man. However, we had hoped for a small family lunch. His body has different plans and we could not go ahead as he was unwell. Nevertheless he received family love and best wishes and we caught up with family later.

A wee tribute to him…..HE got me through so many of those really hard days early in my diagnosis. His counselling skills were very much needed along with the loving and caring man he is. The night before my surgery on 6 July 2017, it was him sorting out where he would stay rather than the awful (for us) place where we had been recommended that helped calm me as I was concerned about his welfare while I was ‘unaware’ in I.C.U. Then when he visited me from home on the Central Coast, his very presence on the balcony of my room was so reassuring….love him, lots.

March into April 2019. 

Re-reading this post as I go, I am aware that it sounds like I was on the go, doing, doing and recovering and doing even more. In some ways I was. It felt SO good to be getting better after almost 2 years. It was though one of those situations with me where I.B.S. would return when I was feeling particularly stressed. And that its pattern would be more likely after any stress event. Even the good ones. I had to learn to pace myself better.

I had to learn to add in time outside.

In nature.

Taking walks.

Being a fun photographer…and then also using my creative senses to enjoy art of some kind to fill my visual and kinaesthetic senses.

Remembering my late Mum’s death anniversary here.

Learning where to STOP..is here. Next time, will be Part Two: April – December 2019.

Reality of my reconstructed mouth….

And in the next part of Chapter 24, “this” concept changes into a plan for a blog series.

Thank you so much if you made it this far.

I appreciate that!

Denyse.

Joining with Natalie here for Weekend Coffee Share.

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Telling My Story. Chapter 23. 17 May 2017- May 2018. Part 2/2. 49/2021.

Telling My Story. Chapter 23. 17 May 2017- May 2018. Part 2/2. 49/2021.

Dear Readers, thank you for reading my posts. Bloggers who are also readers and link up Mondays, thank you too. Always appreciate you doing this. Nearly 4 years ago, this project of mine started actually getting posts done. It took some time. I wasn’t sure how to do this but eventually found a rhythm. Now, I am relieved and delighted to be finishing the series …..until of course I have to do posts for 2021. But they can wait. These posts here as part of Telling My Story are forming a memoir. I have each post printed and in a folder (thanks teacher me). If you find these overly long I get that. But without me telling the details, I would have lost just how this particular time in my life was.

So, I am saying, should you find it too wordy, stick with the photos…and look at the captions if that is the case….and thanks again. Only “two more” to come: Tuesday 27 April and Thursday 6 May.

You are awesome. All of you…sticking with me! Denyse.

The backstory first:

Almost FOUR years ago now ….I thought it was time, seeing I had a blog, to start writing my story. It was on advice from a blogging friend, now published author that I did. Then, for a long time I did not. Because cancer was diagnosed.

Nevertheless, I eventually returned to the story and now I am at Chapter Twenty Three & It’s One Post.  Two Parts. Part One is here.

So, in keeping with my ethical approach to all things, I am making the chapters about MY recollections to various changes in life for me, and us, and life as we knew it. I hope I can continue sharing the story without any intentionally negative or hurtful references to others who are in my life as friends and family members. All of the stories to date found here.

And with this chapter, another photo…taken this year overlooking the harbour at Dobroyd near where I grew up close to Manly N.S.W.

Telling My Story. Chapter Twenty Three. Part Two of Two. May 2017 – May 2018.

Why I thought I could  tell this part of my story in just one post it’s not possible….

There was more I wanted to add to Telling My Story even though I posted a great deal about the topics contained within this post I am adding links back to those posts as I see applicable.

December 2017.

Always a month of some excitement and anticipation, this one was as well but with added events. Our eldest granddaughter was having her 21st Birthday as a family & friends picnic lunch in a lovely park and I was determined to attend. It would be my first big function for at least 2-3 years.

But before that, there was a trip back to my surgeon for another check post the 2nd surgery in November, and more. I finished my teaching connections(already had in reality) with end of membership of N.S.W. Teachers Federation.

Our daughter graduated from her Master of Education course at CSU and attended with her offspring and wore the same cloak I did for my Masters of Education.

I visited my father before Christmas to catch up and knowing me, left him some frozen meals and treats.

I became more creative with my eating…remember no upper teeth and just 8 on the bottom…but see the summer lunch picture, I could get it all down over time. The secret still for me (and many with head and neck cancer) is to have slippery, wet items to help foods mix better to swallow and to have water on hand.

Dressing with purpose each day continued and gave me a focus on looking good and feeling better within myself. I always went somewhere for a coffee. Sometimes I had something to eat that I could manage in tiny pieces. Two of these cafes I still visit now and they were so kind to me back then.

Going Out Each Day Was (still is!) So Important.

Finishing 2017 and Welcoming 2018.

We had a quiet Christmas but we had visits from family. Very grateful. My husband had to take quite a few photos of the inside of my mouth to share via email with my surgeon over the January break. He was great and it was reassuring. You see, I had no idea really of how these surgeries would work out for me. I trusted my professional teams. I knew I had a 3rd surgery in early February but there was always more happening than my recovery!

February Surgery. March Recovery. 

I would love to write how this time went so well and with no problems but it did not. Even though we had planned it would. This pre-surgery time, we came down the day before, and my husband went to help our daughter at her place and I enjoyed re-visiting Sydney. I missed much of the sights and was determined to enjoy what I could. However, Sydney was changed. Like me. Streets were torn up for light rail. Sigh. Anyway for distraction’s sake I did this:

Before I knew it we (husband my ever present companion) were walking up Missenden Road Camperdown from our accommodation, to take me to Chris O’Brien Lifehouse for reconstructive surgery #3.

Yes, I did have foam holding those stitches inside my nose down to my flap which was inside my mouth. It was awkward, and I had to wait a while for them to come out. But I still managed coffee. AND I went out.

Back to Sydney for removal of stitches, check of the stent (it’s a clear mouth guard screwed into the abutments in my jaw created by the fibula) and then orders to continue to see my prosthodontist for check. Honestly it was pretty horrible and stinky for me wearing that stent but it was all for the good. To stretch out my man-made lip (well, woman made really from my own (leg)skin.

Time for my first photo request of my surgeon and his clinical nurse. So grateful for them. They also got cakes..of course they did (and still do)

But wait, we also needed to move house. At Gorokan where we rented since November 2015, the owners wanted to return. OK. That meant we had to find another place. Our rental agency was so good (still is) and found us a somewhat more expensive house but also more comfortable but it also meant…packing up and moving again, and this was planned for by early days of April.

One Step Forward. Four Steps Back.

My prosthodontist team at Westmead was now seeing me every week or so and checking on the stent, taking it out, cleaning it and returning it. It was no pleasant and my husband was a very kind and compassionate driver and carer. But I was elated in late February when these two men reckoned the healing was fine and the stent could be removed. WOW.

For about a day or so.

 

You see, my skin in the space that was being created did not want to stay where it was supposed to and it jumped right back meaning…sadly not only did the stent have to go back in BUT I would, even though it was no confirmed till May, have to have a 4th reconstructive surgery. My anxiety and I.B.S. worries were high. Surgery likely, house move and just dealing with travel and my inner expectations. On March 1 I had what I would call something like a panic attack but it was caused by high levels of gut spasming because I had taken too many ibubrufen in my fear of having an episode of diarrhoea. Eventually I settled enough for my team to work inside my mouth, and then we came home.

After that, my self-confidence had to grow and I began doing my own trips back and forth to Westmead.

And in March 2018, this Telling My Story Chapter Two was published here.

March into April 2018.

House needed packing up.

My husband did a great deal of boxing up items. Very efficient. Then we realised in the new house we needed more details of contents rather than room destination.

I continued with regular visits back and forth to Westmead. Sometimes these were up to 4 hours in the chair. The prosthodontist needed to do a lot of measuring and checking since we both knew a fourth surgery would be happening and this one needed to be right.

I sure had my patience tested but I was always in the kindest and gentlest of hands and could call a break from the chair when I needed it. My emotional levels went up and down a bit as I was always waiting to know if something wasn’t going well. I sought constant reassurance and by speaking up about that need frankly my prosthodontist understood and was very generous with my maintenance of my mouth. Three years on, he still is. I am going well. But where were we?

Moving.

As I compiled this post, I sit here happily in this same rental property which we have just re-leased until April 2022. It is in a lovely neighbourhood, lots of shops nearby and only 20 minutes to the beach and 10 minutes to the M1 back to Sydney. Our medical services are here and at over 70 now, we appreciate that very much.

What May 2018 Brought.

A visit to my head and neck surgeon who confirmed there would be a fourth surgery and that this time the stent would stay on for months not week. I will admit I was a bit teary (and angry) on the way home as it felt like all that February’s work was undone. However…I got over myself. I always do.

How Did I Manage My Emotional Health?

I became better over time I guess but anxiety about “does this mean cancer is back” for any type of symptom or little thing going wrong in my mouth was always present. Yet, I would seek reassurance and move on. My G.P. was/is terrific at that. And I continued to take the anti-depressant.

Our family was in some ways changing and growing away from us as they edged to adulthood, and family settings changed. We usually got a visit to our place once each school holidays.

I became a meditator via Calm after finishing with Headspace as my paid app, and this continues to be my preferred meditation to this day.

With some distraction therapy i.e. my art was/is a great way to be mindful about just one thing.

My blog. Always. It was and continues to be a great way to remember the world is not just about my cancer recovery…

Being sociable on line. In fact I was already that way but my interests grew and this was about when I took more interest in becoming involved with giving back to those who help others.

I follow Chris O’Brien Lifehouse and over time in 2018 they wrote part of my story on their website.

Beyond Five – as Head and Neck Cancer Australia is now known – was an account I not only followed but in 2018 felt that I could perhaps make a contribution someway in terms of education. That site also has my original story.

In the next Telling My Story, I will share more about my reach out to politicians and about joining head and neck cancer groups but for now…I was focussed on ONE thing…

the May Surgery

Off we went to Sydney, repeating the place to stay and then we both did the visiting Sydney as tourist again. A return Ferry trip to the Zoo is brilliant to see the Harbour at its best.

The next morning, up at 5.45 a.m. for the silent walk in the dark turning to light to Chris O’Brien Lifehouse knowing I would be first again. How much do I love my surgeon who can do that for me. Up to day surgery, off with the day clothes, on with the gowns, husband farewelled back to Unit where we stayed and then…after a brief chat to some of my team in the anaesthetic bay, I remember getting onto the table for this one…and then…not much till I was up and dressed in recovery. And the big shock I got when I looked in the mirror.

How Did The Rest Of May Proceed?

I already knew what recovery looked and felt like. Yes, it was/is painful and yes I had to adapt again to eating differently but I also got a bit ambitious. You see, I had my second skin graft taken from my thigh and it was packed with special seaweed dressing and firmly bandaged (this was a repeat of what happened at November 2017 surgery) and I knew that in 2 weeks I would have a bath and it would soak off.

Until I decided to do some driving..to Sydney to see my Dad and to Gosford to get some cakes from Kyla and I felt something wet and sticky down my leg one evening not even a week post surgery. I admit I panic. But I also have a calm husband, an iphone and a direct line to my HNC nurse. Cate was reassuring, bandage it up a bit more, see how it goes. Nope. No good. I was teary. However, she in her professional way, showed Jonathan the pics and he said, in the bath now. Take it off over time. My husband had bandages and coverings from my 2017 leg wound recovery and that is what we did. Phew.

But still, things were a little more tricky/worrying when on last days in May, I woke feeling something  hard coming through the top of my lip. YIKES. I texted my surgeon. Not something I did lightly and within a few minutes, he rang. He told me it was an area he had put a small stitch in and hoped it would stay. The hard thing I could feel was the stent, not as I initially thought the ‘jaw’ and he said he would let my prosthodontist know and he would get back to me.

He did. I went to Sydney that day and was somewhat reassured that I could watch it, apply some anti biotic cream I think, and the prosthodontist said maybe another surgery (!) or it might close up by itself. Over time it did. Phew. Skin! Very grateful it grew.

Oh gosh. What’s next?

June 2018 into 2019 that’s what!

Thank you for sticking with my story. It’s been a good way to remember how far I have come, and I have greater appreciation for my courage and fortitude at the time even more, three years after this happened.

Denyse.

Linking up here with Leanne for Lovin Life Linky

Joining with Natalie here for Weekend Coffee Share.

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#LifeThisWeek. 16/51. Telling My Story. Ch. 23. 17 May 2017 – May 2018. Part 1/2. 48/2021.

#LifeThisWeek. 16/51. Telling My Story. Chapter Twenty Three. 17 May 2017 – May 2018. 48/2021.

The backstory first:

Almost FOUR years ago now ….I thought it was time, seeing I had a blog, to start writing my story. It was on advice from a blogging friend, now published author that I did. Then, for a long time I did not. Because cancer was diagnosed.

Nevertheless, I eventually returned to the story and now I am at Chapter Twenty Three & It’s One Post.  Two Parts. 

So, in keeping with my ethical approach to all things, I am making the chapters about MY recollections to various changes in life for me, and us, and life as we knew it. I hope I can continue sharing the story without any intentionally negative or hurtful references to others who are in my life as friends and family members. All of the stories to date found here.

And with this chapter, another photo…taken this year overlooking the harbour at Dobroyd near where I grew up close to Manly N.S.W.

Telling My Story. Chapter Twenty Three. Part One of Two. 17 May 2017 – May 2018.

Why I thought I could  tell this part of my story in just one post it’s not possible….

There was more I wanted to add to Telling My Story even though I posted a great deal about the topics contained within this post I am adding links back to those posts as I see applicable.

Last time, I ended with these sentences:

And that is where this Chapter ends.

If you have guessed where it’s going, then you are probably right.

Wednesday 17th May 2017. The Day.

I was quite relieved after the harrowing processes explained in the last Telling My Story.

On the morning of Wednesday 17th May 2017, my husband drove to his lifeline counselling volunteer role and I sat finishing off a late breakfast when my phone rang. As soon as it did, and I knew the voice, I sensed the words that would change my life:

Denyse, you have squamous cell carcinoma in those gums. Late last night the lab rang me and I left it till today to let you know. I am so sorry.

There was a part of me that was sad and shocked but not surprised and then there was the part of me that could kick into organisational mode after a very tiny cry with the lovely Dr Stef. She told me of the organisation from the Oral Surgeon’s and how I would be referred to a “Dr Clark” in Sydney….and to make contact with them. I hung up, then practical me called my husband’s workplace, and asked them to get him to call me. He did, soon enough, and came straight home (40 minute drive) as soon as he knew. This gave me (organised me) time to:

  • ring my G.P. for an appointment that afternoon. I needed to share and also plan some kind of support to get me to Sydney.
  • ring the rooms of the (Dr) now I know Professor Jonathan Clark, to make an appointment and I was offered one the very next day with his colleague.  I took it.
  • I did some research of where the place was we would be going to and…awaited my husband’s arrival.

Yes I had a long hug with my husband and a cry but, in so many ways THIS news answered so many questions that no-one considered a possibility.

We told no-one, saw our G.P. who was shocked but very supportive and helpful, and that night prepared myself as best I could to navigate 3 things I had become fearful about:

  1. drive in the car as a passenger
  2. go on the M1 and into Sydney
  3. finding toilet stops along the way

What Happened After That News.

It’s all in my first post about my cancer is here.

I was surprised in some ways about my attitude to the diagnosis and what came next. My husband reminds me though, that I had gone from the unknown to the known – a very long time it took too – and that is always better to deal with.

We told no-one other than our G.P. my former G.P. and my dentist. We wanted more information before sharing with our family: my father and our two adult children. Once we did that, there was for the sake of family re-connection a softening of what had been some difficulties within our extended family. Our son made the trip to see us and sharing time with my grandchildren was heartening and gave me great support for what lay ahead. And our daughter came once I was back home.

How to Wait.

Not good at this much but over time, I have learned some strategies which help me.

  • One is to go outside or drive somewhere pleasant to view nature and I did this.
  • Another is art or creating a mandala and I sure did these.
  • I did not, even after a brief look, trawl the internet. I had already worked out my cancer was rare.
  • I cooked. I knew I would have no upper teeth when I got home.
  • I prepared as best I could, clothing and other times for hospital
  • Completing the hospital admission forms. Oh my. They take FOREVER. But over time I did them.
  • Left all my  personal details such as passwords and so on to my husband and put them in writing, and signed my daughter into my facebook account so she could update people.
  • Go for a drive while I could.
  • Walk on the beach.
  • Take photos to remind me.
  • Send emails to the Ass/Professor with the questions I came up with. He returned with great answers. He also referred me to then, the new site called Beyond Five but my brain was not up to searching much at all in June 2017.
  • Ask a few times as the possible date drew closer, if the surgery was going ahead
  • Get a very short hair cut.
  • Pack a bag of things to do such as an art book, some half done mandalas and markers and leads for my iphone
  • Buy a new ipad. Well, my old one needed replacing!

Will I Blog About Cancer?

I thought long and hard on this one and perhaps it was a protective thing at the time. I did not want to be only a cancer blogger as I wanted to keep writing and sharing other parts of my life. This post before I had my surgery in 2017 is here.  I decided this may help others who have a cancer diagnosis like mine so over time, I began leaving them in this part of my home page. But let’s not get too far ahead of me!

How Will My Life Change?

I think it already had.

Life had been very challenging and with the cancer diagnosis there was a small surge of resilience in amongst the awful worries and fears and this in its own way buoyed me for the surgery which would be brutal, disfiguring, long and…having unknowns in  the outcome because “until all the biopsies etc come back” we do not know whether you will also need radiation.

I did however, stick with my tried and true helping mechanisms. They were walking outside, noticing nature, writing non-cancer blog posts, sharing on line, chatting in person or on the phone and seeing our son and daughter and their kids was a tremendous boon. I got the sweetest care package from my Aussie friend who lives in San Francisco so I felt very cared for and loved.

These Posts Tell The Update and Post-Surgery Stories Here.

First update after surgery is here.

Second update after surgery is here.

Third Update: now home and how things are going is here

What I Learned About Me and Cancer -4 months on is here

But What Else Happened?

The time of recovery at home was long, slow and methodical as it needed to be for someone who had part of her leg put into her mouth. OK, I can say that!

The good news at the 3 week post-surgery check back in Sydney’s Chris O’Brien Lifehouse was that there was no cancer found in my lymph glands and that whilst there was some in the (jaw) bone, the team would not recommend radiation as it might improve things for me to 96% whereas with ‘just the surgery’ I was at 95%. We agreed wholeheartedly and to be honest, I am terrified that IF my cancer came back radiation may be the answer. Too many complications to live with as I now know from my friends in a facebook group so I try not to go down that path of what if.

What changed for us as a couple is that over time, my husband wound down some of the study and volunteer activities he was doing. He was needed at home more but I was also pretty determined to be independent once I could be so we reached a good arrangement. As I became more mobile, even though my leg was still getting treatments by the community nurse, I could go to the shops.

I admit it was hard at first because I did not have much physical strength and I worried about people bumping my leg, but over time it settled. I even managed to drive to Dee Why to see my Dad after 5 months and he was so relieved to see me. I arranged to meet up with my daughter and granddaughters for a morning tea at Hornsby and we were delighted to accept the invitation to attend our eldest granddaughter’s 21st in Sydney.

But wait, there is more.

I had lost a LOT of weight before my cancer was finally diagnosed and I needed NOT to lose any weight once home in July as keeping weight on, helps a person with head and neck cancer to recover. I had nothing much that fitted me any more and finally, F I N A L L Y I admitted to myself it was time, around the end of October to take an interest in my appearance AND to go somewhere each day. Later in 2017 I wrote about my weight story    here

Dressing With Purpose, Having a Photo Taken and Going For Coffee.

This improved my emotional health big time, had me socialising again in person and on-line and even though I had no teeth up top and my smile was non-existent, I was back. Connecting and loving it.

Being a Part of Celebrating Women.

Before I knew I had cancer, I bravely offered to share my story with Dr Kirstin Ferguson for a project she began (it grew x 200) on social media. I sent in my responses to her questions, with some photos and a week before it was to be live, she let me know and I had only just found out I had cancer. She said, pull out if you wish and I thought…nah, tell the story. It went ahead, and later on in the book she and Catherine Fox co-wrote, my story is there too!

 

In a book! Me. Wonderful

More Surgery. More Recovery Time. 

When I was in I.C.U. after the first and big surgery, I was told by one of the registrars’ with my head and neck surgeon’s team that I would be having more surgeries. I was devastated. I said nothing at the time, but when I got the chance, and I was well on my way to recovery and in a room of my own at Chris O’Brien Lifehouse, I spoke to her about how that was, for me, not the best timing for her comment. She said she would think on that. Perhaps I had never considered that more surgeries were to come…or had not wanted to know back in May 2017 at my diagnosis time, but yes…more surgeries.

November 2017.

Day Surgery. On the day when we heard Australia had voted for same sex marriage. The day itself started very early with a drive from Gorokan to Camperdown in peak hour traffic to arrive by 10.30. I disliked the pressure of the concern about arriving on time and for the future surgeries we (I asked!) decided to stay the night before in Sydney. Reconstruction surgery again. Inside my mouth again. Pain and more as I never quite understood the work these marvellous people did. However, new pain too. On my right thigh from a skin graft taken to go inside my mouth. I do know that after my check up visit in December, my husband had to take photos of the inside of my mouth to send to my Professor on a regular basis. We did. Things looked OK to him. I never knew really because in a very small space there had been a lot added inside me!

Happy 68th Birthday and Congratulations to Our Daughter. 

Our daughter finally completed her Masters of Education (Teacher Librarian) this year and we were so pleased for her. She did it tough over the time, raising kids solo, house moves and a new school in the mix, but she did it. We couldn’t attend her graduation so we did the next best thing…celebration with lemon meringue pie.

Turing 68 felt 1000% different to turning 67 (last post) where anxiety plagued me and a sore mouth. I celebrated out with a cuppa with my husband and donned a dress for the first time in years. Then our eldest granddaughter came up to share the celebrations, and I found out, that I could no longer blow out the candle on a cake! That night I had the amazing (hah) experience of sitting in a bath for 30 minutes and allowing the seaweed based dressing on my thigh to come off gently. It did. Over time. Good to be able to shower again too.

And I will be back with Part 2 of this post in a bit. Starting from December 2017 and finishing in May 2018.

Thank you for your interest, comments and support.

Denyse.

Link Up #236

Life This Week. Link Up #236

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