Wednesday 4th August 2021

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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Head & Neck Cancer: Eating & Drinking Challenges. 29/51 #LifeThisWeek. 88/2021.

Head & Neck Cancer: Eating & Drinking Challenges. 29/51 #LifeThisWeek. 88/2021.

 

July: World Head and Neck Cancer Day. 27.7.2021.

As it’s July, I am publishing more posts relating to Head and Neck Cancer as 27 July is World Head and Neck Cancer Day. It only started back in 2014 I think, with Michael Douglas the actor making the speech to open the world congress for all Head and Neck Professionals. Michael has had #hnc as it’s often abbreviated.

In my role as an Ambassador for Head and Neck Cancer Australia, I will share more on-line and links about it too.

Blog Disclaimer: see end of post.

Denyse:

Those of you who have followed me before and since I was diagnosed with a head and neck cancer, know that I continue to write and share about this awful cancer which affects more people than ever. And, for me, back in 2017 I was completely ignorant of its existence.

To inform, educate and to make aware is what I like to think is something I can contribute these days on-line.

I’ve been given a new book to help cancer patients and their carers to read and review. It’s by Dr Toni Lindsay, a qualified Clinical and Health Psychologist who works in Oncology at Chris O’Brien Lifehouse. This quote resonated with me, as I am guessing it would with the other people I have mentioned in this post:

Eating is one of our most social activities and often forms much of our connection and engagement with our family and friends. Feeling you are not able to engage in this way can be overwhelming and isolating. So if you are likely to be unable to eat for extended periods of time *it is perhaps worth thinking of ways in which you can continue in social activities that don’t involved food. 

*We understand this, of course, as part of our recovery but, we are also able to eat again and yet, it remains a challenge. Please read on! Thank you.

This is why I am sharing about the challenges of eating and drinking after head and neck cancer with a lot of help from my friends, and Head and Neck Cancer Australia.

This is one place you could find information:

https://www.headandneckcancer.org.au/health-and-wellbeing/diet-and-nutrition/nutrition-videos

This image from the day of filming at Chris O’Brien Lifehouse.

Here is my blog post about that day, the ways in which I have had to adapt my eating and drinking and more.

And those of you who know me in real life, know that I can socialise but it’s helpful for me to have a coffee and something sweet to eat so I tend to choose going to a late morning tea with friends and family and they may have lunch. I cannot eat a meal outside the house unless it’s with family and I can pick & choose. Sound fussy? Not really but practical.

You see my mouth can only hold so much food at a time, and chewing only has two small areas in my mouth, towards the front and food congregates there as I try to get it right for swallowing with ease and not choking.

It’s something that you cannot tell by looking at me, right? But it is like this and I now share more frankly as a result.

I also lose fluid at the side of my mouth unless I keep up with the paper towels/tissues. My upper lip was reconstructed and it does not seal any more. However, it is all pretty good, and the more I share, the less I am embarrassed I guess.

Maureen:

Like me, Maureen is often seen on social media with a coffee in front of her. It is NOT the same double shot as mine but one she truly enjoys and can have it with friends.

Maureen is  a Woman of Courage who told her story here.

She sent me these notes about her eating & drinking challenges.

What adaptations have you had to make to daily life and eating/drinking post head and neck cancer?

  1. My case is unusual and my eating is marred by dribbling so I have to have facecloths to my lips every time I consume anything.
  2. I’ve lost teeth and my marginal mandibular nerve.
  3. I have two boxes of cloths, one on each end of the sofa and I take at least 3 wherever I go.
  4. Believe me, tissues are not enough, even big fat hospital tissues. I
  5. have to do a machine wash every day.
  6. Never had any help with this as I guess there is nothing else you can do.

What advice would you give to others as they recover and are back ‘in the real world’ post HNC?

My advice as such is that it is good to meet up with other non-social eaters and have a coffee.

Coffee is manageable – in fact I often have two cups when I’m with “normals” who are eating. Maureen’s personal blog about Head and Neck Cancer is here. 

Maureen is one of the leaders of this amazing Head and Neck Cancer Facebook Group and she is also the person who blogs about head and neck cancer here and has been instrumental with other people connected with head and neck charity in New Zealand, starting this way of helping others. Head and Neck Cancer Aotearoa Charitable Trust. https://hncsa.org.nz/

IF a family member or someone you know does have a diagnosis of a head and neck cancer or that person is a carer, the value of a good facebook group cannot be over-done.

The friendly space that IS this group for eligible people to request membership is a good one. https://www.facebook.com/groups/HNCSupport.Aotearoa

There are people from all over the world but the group is not huge so personal connections can be made. It is mainly made up of New Zealanders, and Aussies too…along with those from the U.S. There are questions to be answered to join and it IS strictly for those with a head and neck cancer. Link is here.

 

Yvonne:

Readers here have met Yvonne via her post as a Woman of Courage here. 

Yvonne has appeared in an on-line Soup for The Soul event for Head and Neck Cancer Australia last year when we were prevented from doing anything ‘live’ because of COVID. Yvonne’s cancer has changed so much about her life, and the link here, to her newly published book tells more.
1.What adaptations have you had to make to daily life and eating/drinking post head and neck cancer?
  • Meals and what they consist of have completely changed for me.
  • I note now I eat a lot more vegetable and pulses.
  • I do add fruit to my smoothies but sadly just biting into fruit and eating it is out of my range unless it’s mango, lychee or something of that consistency.
  • Drinking alcohol is now pretty much non existent and I was quite the drinker in that I was a party girl and loved nothing more than to sit with friends over a bottle of sparkling or 3 !

So that has also changed for me. It has had a bigger impact too I think because pretty much COVID hit when I was convalescing and of course I had already quit my job and moved countries.

Picking at food and tasting whilst cooking is non existent too these days, I miss just jamming my finger in my mouth to taste stuff, my taste buds thankfully have come back but I still surprise myself with flavour layering occasionally and find sharp and sudden flavours ( acid and sour) sometime confrontational.
What advice would you give to others as they recover and are back ‘in the real world’ post HNC?
I am also very keen to see more support around the emotional and psychological fallout of HNC treatment, I think this has a huge impact as does food in terms of how people come out the other side.

Do my program!  : )  Mind Food Body Program as part of the nofeedingtubes movement.

Yvonne introduced me to this word. Yes, I understand this well. Thank you.

Commensality – eating and drinking at the same table – is a fundamental social activity, which creates and cements relationships. It also sets boundaries, including or excluding people according to a set of criteria defined by the society.

 

Marty:

Marty is a fellow Ambassador for Head and Neck Cancer Australia. He and I chatted recently about the challenges of eating post head and neck cancer.

We met back in September 2018 and I was so excited to not only meet up but to share a photo as I had only just had my “teeth” installed.

Interestingly some of his responses were ones I have heard before from members of the Central Coast Head and Neck Cancer Support Group.

Marty is more than 17 years post his cancer treatments. Radiation was one.

Marty spoke of limitations of eating rice, fried rice and spicy foods.

Food that were previously enjoyed. It seems taste and texture remains an issue.

And often because of the loss of salivary glands or damage, swallowing becomes hard.

So like others I asked, Marty finds he has to adapt his eating practices often making sure there is a liquid element to the meal such as soup – this is why the fundraiser for head and neck cancer focusses on soup – and to have a drink of water nearby.

Most of us carry out own small bottles of water.

For some of us, it’s a lack of saliva and we need to replenish our mouths to be able to talk. For others it’s about making sure some lingering food crumbs and pieces can go down.

This group photo of some member of the Central Coast Head and Neck Support group at Christmas time 2020 tells an unwritten story.

 

At this table there are 7 head and neck cancer ‘survivors’.

  • Each of us has had different treatments and each of us has been left with eating (and sometimes drinking) challenges when we go out.
  • There were some here who had to have lots of gravy (as an extra) added to their meals, others asked for their meal to be “blended”…oh that is not something some places like to do.
  • Seriously hard on the person who could have enjoyed the baked dinner that way.
  • Instead, from memory the meal became mashed potato and gravy.
  • Others had to make sure there was nothing spicy or with chillis.
  • And as for me, you already know, I chose what I knew I could eat from a mouth concern and how much my stomach could handle.
  • I enjoyed coffee and some date loaf. I have learned not to be embarrassed because the social part of the get together was for me, the important part.

And More From Denyse.

I cannot use a straw any more. My mouth does not seal.

I can have a Christmas lunch. It just needs to be adapted by me.

Here is what I ate on Christmas Day 2020 at home. We were in a covid concerning time and chose not to go to Sydney. So, I made up for my disappointment this way.

Soup for The Soul.

Sadly, due to on-going Covid19 restrictions and closures in our area of New South Wales, this event will not proceed as hoped on World Head and Neck Cancer Day. We “are” however, hopeful of having it at another time. 

Tracey and Me: Soup For the Soul.

Tammy.

In keeping with my own learning about the effects of head and neck cancer, I am adding a paragraph, written by a woman who is both carer and wife in a long term marriage and as things go, can never again have the pleasure of the simplest thing: eating a meal with her husband who has had devastating head and neck cancers taking away his ability to talk – he can communicate via Ipad, but his wife can no longer remember how he sounded…but it’s this, as she gave me permission to share, that I feel needs to be thought about and taken into consideration:

I also think of those who never eat again. For many of this group, communication/talking is not an option either. I know its a very small/rare group , but it’s one dear to me. Socialising involves talking, eating and drinking with others . Its what makes us Human Beings. For a small group of H&Ners, none of this is possible.

Thank you Tammy. I am grateful for your words.

Denyse.

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. Words from others are accordingly from their personal experience and not to be taken as nutritional/dietary/medical advice. Seek what you might need from qualified health professional  who understand the needs of cancer patients.  Denyse Whelan. 2021.

Link Up #249

Life This Week. Link Up #249

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: Share Your Snaps. #6. Mine Will Relate to Head & Neck Cancer Awareness. 

You are invited to the Inlinkz link party!

Click here to enter

 

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Women of Courage Series. #63. Cosette Calder. 86/2021.

Women of Courage Series. #63. Cosette Calder. 86/2021.

In July 2021 The Women of Courage posts will be connected in some way to World Head and Neck Cancer Month (July) and the #WHNCD Day on 27 July 2021. Those who have followed my blog since 2017 know I was diagnosed with a rare Head and Neck Cancer in my upper gums and under the top lip. More here.

Two years ago….around this time of year, 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.

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

Those of us who have been diagnosed with a head and neck cancer never feel quite alone when there are others we can share our stories and one such place is a special facebook group (private, but ask to join) here based in New Zealand. This is where I virtually met Cosette Calder, aged 46, and she was someone I reached out to share her story of head and neck cancer, and here she is. Thank you Cosette.

 

 

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

  • In 2015 I was diagnosed with throat cancer.
  • I had a young family, full time job and life was busy.
  • Suddenly everything stopped and I had to undergo Chemo and Radiation Treatment to beat this cancer and have a chance to live.

 

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

  • I had a brutal cancer treatment.
  • I couldn’t eat food and had to have a tube inserted into my stomach.
  • For two months I only drank water and was tube fed.
  • I lost 8kgs and some of my hair fell out.
  • I really had to dig deep to get through this treatment.
  • I had a plastic mask made of my head and shoulders.
  • This mask was for the radiation treatment.
  • My head had to be perfectly still on the radiation table so the mask was bolted across my face to the table for 20 minutes a day during radiation treatment.
  • It is incredibly scary and claustrophobic.
  • I somehow managed it.
  • I am proud of myself for the courage of wearing the mask when I was so ill and feeling down.
  • I fought hard whilst being so unwell. I didn’t realise I could be so strong.

 

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

  • Keep putting one foot in front of the other.
  • Sometimes we can’t help what happens to us.
  • Keep moving on and keep trying.
  • Acceptance too helps.
  • By accepting my cancer diagnosis I was able to focus and keep moving ahead.

 

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

  • I am stronger now.
  • I have been pushed to the limit and I know how lucky I am to be here.

 

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

  • You CAN do it!

 

Oh my, yes we do have brutal treatments don’t we?

However, in reading this of your experience as a head and neck cancer patient Cosette, and, now well-recovered, it is a tribute to your human qualities of strength and courage that you have recovered and now share your story. Thank you again. I am sharing the information below from the New Zealand Based Facebook Group for Head & Neck Cancers. Thanks to for all you do to share awareness!

Denyse.

Note About Head and Neck Cancer Support on-line.

IF a family member or someone you know does have a diagnosis of a head and neck cancer or that person is a carer, the value of a good facebook group cannot be over-done. The friendly space that IS this group for eligible people to request membership is a good one. There are people from all over the world but the group is not huge so personal connections can be made. It is mainly made up of New Zealanders, and Aussies too…along with those from the U.S. There are questions to be answered to join and it IS strictly for those with a head and neck cancer. Link is here.

This is a link to Head and Neck Cancer Australia too. This is where I found information initially after my 2017 diagnosis and where I am now an Ambassador.

Joining with Natalie here for Weekend Coffee Share.

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

 

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Self Care Stories#4. 28/51 #LifeThisWeek. 85/2021.

Self Care Stories #4. 28/51 #LifeThisWeek. 85/2021.

Self Care Stories are a regular feature on the optional prompts selection for Life This Week, occurring at 7 week intervals. Keeping myself accountable to me…and for your interest as readers and commenters is what my posts are about. I am also doing my best to respond under a few of my chosen categories.

Every 7th week

Covid 19 and Lockdown.

At the time of writing this post, where we live is included in a lockdown for two weeks. Of the school holidays! Grrr. No family visits. However, I am not one to be annoyed for too long these days and am grateful that we are both fully vaxxed against Covid, I had a Covid test because of a slight sore throat and it was negative. I gave myself a project/challenge to do for the lockdown period and here is a group of the photos. I hope you are well wherever you are living right now.

Gratitude.

I have gone back to being more regular at writing some things to be grateful for each day.

I am also noticing that if I have some days which do not feel so agreeable emotionally, when I call on gratitude I can do a pretty quick change of pace and attitude.

It surprises me how much I remember this now, so I guess I am integrating it better than I thought.

Health and Mindfulness.

I never need a reminder to be considerate of my mindfulness practice as doing a Calm meditation each morning, the Daily Calm, then ending my day with the Daily Trip, pays me dividends each day. I have now completed over 555 days in a row. This image from that day.  Not all days have an original meditation but that’s OK too…and why it’s called practice. We keep on doing it to learn.

 

 

And add to that practice is my art and playing with materials creatively.

Photography Shared.

There is no doubt about it, for me, have an eye into the world around me and using my iphone to capture it gives me so much joy each day.

When I review the photos I am kind in my self talk and I now have a pretty good photographer’s eye. Thanks to lessons way back in Sydney, AND now having a wonderful iphone ProMax 11. 3 lenses!

I also am glad I took so many photos and movies (little vids on the phone) of our grandchildren when we cared for them and when they had little holidays with us. Those days have passed now but my husband and I do enjoy some reminiscing and it’s a great time we share(d) together.

Mind you, we have few ‘easy to access’ memories of the pre-iphone times of the older grandkids, and I must, at some stage, get a quote on having some old video cassettes converted. We do have photos in albums, but listening and looking at the fun the get up to is priceless.

This is from a recent post. I only just noticed the HEART shape in the tree.

Stories About Ageing.

I am old(er) than I was. Ha! That is a fact.

I am more accepting of some of the physical changes happening to my skin  that cannot be “fixed” but can be better cared for, so I have some good quality sunscreen, moisturiser with tint to wear every day.

And, I am remembering more to actually add some moisturiser to my scaly legs. And I have some hormonal cream to use as well. Not stating the obvious  about where it’s applied.

My hairdresser and I agree my ‘thinning’ hair has stopped and we put it down to the 5 anaesthetics in 2020 as did my G.P. but it is still a part of ageing so I will be grateful for what I have. Brilliant hairdresser who does such a symmetrical and pleasing haircut every 4 weeks.

We are also getting to enjoy life as older married people. By that I mean we actually LOVE the times we are having now. Not 100% concerned with work anymore, care of little kids, worried about family members…we are loving and living our life mindfully each day. Lots of laughs, time for solo interests and shared time each evening talking and relaxing after our day.

We had morning tea out again recently, before lockdown, and used the NSW Government Dine Out Vouchers.

Neither of us can manage a meal out anymore so morning tea is ideal. As we have aged – and it’s not just my post oral cancer restrictions, we eat smaller portions.

Relevance is something I think about these days. Back in years of education, I had a title. I knew my role. I did it well. However, I am retired from that role as a school principal. But I am still relevant to my friends and colleagues via social media and in real life. This image of me here with a colleague at a Sydney primary school is when I was Relieving Principal there. Now, over 22 years later, someone I have known in school education since 2013 is the newly appointed principal. I am so proud of him. He’s invited me to visit too once Covid is calmer!

What I Wore.

Goodness me, it has been a long time for one of these. I have stopped doing daily photos but every so often I might ask my husband to take one.

I know now, and this might sound weird, but bear with me….that I actually look ok.

I used to scour my daily photos for ‘what’s wrong’ and that is/was a problem for me.

I have had to accept that whilst I may not like my large upper arms and my double chins, they are are much a part of me ..right now…as my hazel eyes, and great nose and ears.

To pick on parts of my body is something I am doing all I can to reduce. I am never dieting again. I am accepting that I have actually remained around the same weight now for almost 3 years. I still “can’t” believe this at times but each of my clothes tells me that’s correct.

I am a work in progress here. I am proud that I can let the voice of criticism go much more than I ever could.

Word of The Year.

Well… leaving best to last is a good plan.

I smile most days a great deal.

In fact of course I have reasons to smile.

I am well.

I am alive.

But mostly, I smile to connect and communicate with others.

And my reconstructed top lip looks much better as a smile!

That’s my self care post done.

How is your self care progressing?

Denyse.

Link Up #248

Life This Week. Link Up #248

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: 29. Please. 19.7.2021. My Post Is About Head & Neck Cancer Eating & Drinking Challenges.

You are invited to the Inlinkz link party!

Click here to enter

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Women of Courage Series. #62 Juliette O’Brien. 83/2021.

In July 2021 The Women of Courage posts will be connected in some way to World Head and Neck Cancer Month (July) and the #WHNCD Day on 27 July 2021. Those who have followed my blog since 2017 know I was diagnosed with a rare Head and Neck Cancer in my upper gums and under the top lip. More here. And below, as I introduce Woman of Courage, Juliette, I will expand more on our connection.

Women of Courage Series #62 Juliette O’Brien. 83/2021.

Two years ago….around this time of year, 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.

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

I was honoured and delighted when Juliette O’Brien, aged 37 agreed to share her story as a woman of courage. We have yet to meet in person, but we have connected on social media (where she is @juliette_io on twitter) and one day, we will catch up over coffee at Chris O’Brien Lifehouse. Now, if that name seems familiar, then you might be correct in making the connection that Juliette is the late Professor Chris O’Brien AO’s  daughter.

I feel so privileged and glad to have been referred to my head and neck surgeon, Professor Jonathan Clark AM that day back in May 2017. He learned much in his training days from the Head and Neck surgeon we all knew from the long-running show about a Sydney Teaching Hospital,  R.P.A. on Channel 9, Dr Chris O’Brien.

Thank you to Juliette so very much for this. You are a gifted woman in so many ways and a quiet but steady achiever too.

 

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

I lost my dad and elder brother to separate unexpected illnesses when I was in my 20s. I did – and continue to do – my best to support my mum and younger brother, to honour my dad’s and brother’s memories, and to continue to find joy and meaning in the world.

I don’t think any of this is courageous, but it has taken effort and perseverance.

 

How did this change you in any way?

These losses changed me profoundly.

They drove me to question our most common assumptions about what it means to live a ‘good life’, especially external signals like attaining status, hoarding wealth and meeting social expectations.

Living in way that subordinates these to your own principles means pushing through discomfort, fear and disapproval.

I suppose this takes ‘courage’ that I doubt I would have had otherwise.

 

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

 

Sometimes we use the adjective ‘courageous’ as though it is a constant state of being or personality trait.

In fact, I think courage, or at least the possibility of it, presents itself moment to moment through the countless decisions we make, and requires renewed interrogation and commitment every day.

 

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

 

I would like to share a poem by the wonderful John O’Donohue (poet, philosopher, former priest).

It is called ‘For Courage’.

I especially love these phrases: “this darkness has purpose”; and “Close your eyes, Gather all the kindling, About your heart, To create one spark …”.

 

When the light around lessens
And your thoughts darken until
Your body feels fear turn
Cold as a stone inside,

When you find yourself bereft
Of any belief in yourself
And all you unknowingly
Leaned on has fallen,

When one voice commands
Your whole heart,
And it is raven dark,

Steady yourself and see
That it is your own thinking
That darkens your world.

Search and you will find
A diamond-thought of light,

Know that you are not alone,
And that this darkness has purpose;
Gradually it will school your eyes,
To find the one gift your life requires
Hidden within this night-corner.

Invoke the learning
Of every suffering
You have suffered.

Close your eyes.
Gather all the kindling
About your heart
To create one spark
That is all you need
To nourish the flame
That will cleanse the dark
Of its weight of festered fear.

A new confidence will come alive
To urge you towards higher ground
Where your imagination
will learn to engage difficulty
As its most rewarding threshold!

Thank you so much Juliette. Not only for your story but for the added words of John O’Donohue.

His words, narrated before his death, are part of a series of his that I listened to a great deal as I struggled with some challenges in my life’s transitions before cancer.

I cannot and will not compare one person’s story to another, however to know that we can share resources of hope, love, wisdom and courage is to be connected. We need to stay connected.

Looking forward to “that coffee” as soon as Covid is settling!

Denyse.

Note About Head and Neck Cancer Support on-line.

IF a family member or someone you know does have a diagnosis of a head and neck cancer or that person is a carer, the value of a good facebook group cannot be over-done. The friendly space that IS this group for eligible people to request membership is a good one. There are people from all over the world but the group is not huge so personal connections can be made. It is mainly made up of New Zealanders, and Aussies too…along with those from the U.S. There are questions to be answered to join and it IS strictly for those with a head and neck cancer. Link is here.

This is a link to Head and Neck Cancer Australia too. This is where I found information initially after my 2017 diagnosis and where I am now an Ambassador.

 

Joining with Natalie here for Weekend Coffee Share.

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

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Taking Stock #3. 27/51 #LifeThisWeek. 82/2021.

Taking Stock #3. 27/51 #LifeThisWeek. 82/2021.

I wrote about the changes I have made to how I will blog when it’s time for Taking Stock. You are, of course, welcome to use my new version of the prompts or ones initially devised by Pip Lincolne. This optional prompt occurs every 9 weeks. Before I start, some information:

July: World Head and Neck Cancer Day. 27.7.2021.

As we move into July, I will be publishing posts relating to Head and Neck Cancer as 27 July is World Head and Neck Cancer Day. It only started back in 2014 I think, with Michael Douglas the actor making the speech to open the world congress for all Head and Neck Professionals. Michael has had #hnc as its often abbreviated. In my role as an Ambassador for Head and Neck Cancer Australia, I will share more on-line and links about it too. In fact, the only fundraiser held by the charity where I volunteer (HANCA for short) promotes  Soup for the Soul events for people to arrange and then with any funds raised, to donate back to HANCA for the continuation of the support of supplying materials and information to GPs and to Dentist.

My local cafe BluJ’s has agreed to hold a Soup for The Soul Day and will be donating 100% of their takings on two soups. This place is one which I have been doing to for my much loved coffees since 2017 and I am stoked they are wanting to help raise awareness of Head and Neck Cancer along with me. Update: still hoping to go ahead once lockdown is over.

Now: Taking Stock for July 2021.

Admiring: those I see going through really tough times themselves supporting others. Examples I see: from cancer groups, from women in need of assistance and generally those who seem to need it most, reach out to help others.

Becoming: better at self-talk. I know, I know I know. By 71 I would have thought it may have gone completely but the good news, she has a much more gentle and compassionate voice and only every so often goes down what my husband calls the slippery slope. I know enough about my health and moods to recognise this so much more quickly.

Curious: about the ups and down of the blogging world. By that I mean what has obviously happened to many here in Australia there is reduced interest and reduced if not curtailed following of blogs. Maybe I am still naive enough to still think getting my words out there is good for my health…and I am always….

Delighted: that those words are often of interest to fellow bloggers who link up, and others who sometimes read and comment because….

Excited: is how I still am when I see something I have written and shared has a positive reaction.

Feeling: that I am well. It’s an amazing feeling alright and I am loving it.

Going: nowhere in particular beyond our normal neighbourhood and for good reason as we believe it’s….

Helping: to reduce our contact with any Covid 19 clusters and so we are….

Imploring: people to take this whole Covid 19 pandemic and its health and economic reactions and responses seriously even though we still see people….

Joking: about its impact. Maybe I am being super sensitive (yes indeed I can be!) but we Aussies have a tendency to make light of most things. May this time, we need to be serious and conscientious in taking personal responsibility.

Keeping: my life in perspective these days as much as possible and trying not to take on new ventures even though I can be tempted. 

Loving: the ways in which I can find simple joy in my day. It might be one colourful flower amongst a pile of weeds spied as I sit in the traffic queue at the lights or it might be turning the sound on when a friend’s baby LAUGHS with delight and it is shared via Instagram.

Making: the usual batches of meals and cakes and the like, because I only have to do that amount of cooking and baking once and get some nights off as a result. We often cook an individual meal or snack type meal for ourselves and we eat far less in quantity now we are…O L D er. It’s true!

Next: is probably what many of us are thinking about Covid19. There is so much uncertainty despite vaccinations going ahead around the world. And as I wrote above: we are still in Lockdown. 

Observing: that there are some things I notice more when I look down: a tiny leaf in a beautiful red, or a wee shell with a heart shape, or…what do you observe I wonder?

Pleasing: that my inner-self talk border far more on the forgiving and understanding side rather than its predecessor in black and white.

Reading: price labels on everything much better now I have my reading glasses with me in my bag. I don’t need glasses to drive, walk around but when it come to details I do! 

Staying:here as renters of this comfortable for us house as long as we are allowed to by the owners.*

Trying: to understand that even if we had to move (again, she says!) that our real estate agency would always take care of us. *In fact, they have told us that. 

Understanding: that years ago I could not have been this accepting of change. In fact, when….

Viewing: my posts for Taking Stock a few years back my constant refrain was about being housed securely.

Welcoming: your comments on this post.

X- You Choose! I am choosing to add some excerpts from previous Taking Stock posts as I can see that…

Yes: I have changed and for the good in term of my equanimity.

Z – You Choose! What say you? Have you noticed changes in yourself in recent years?

 

I have added these excerpts from 2017 when I was posting about taking stock. The dates are indicators of what was happening to me in 2017! A big year indeed. Interesting to look back.

Feb 2017: unwell with high levels of anxiety.

Waiting: to have enough money to buy a house

Liking: that we do not have enough money to buy a house (yet) because it gives us more time to consider

Needing: to be as kind a friend to myself as I am to others and I am getting better at it

Questioning: why…about quite a few things that I now realise is futile

 

May 2017: just before I was diagnosed with head & neck cancer.

Trawling: Realestate dot com dot au with NO hope of buying anything but getting sad about how big the prices of houses are. Bad news.

Wanting: To be settled in our own affordable house one day. I hope.

Looking: Up at the sky every single day. It never fails to impress me.

Deciding: That going for a walk is better for feeling anxious than sitting feeling anxious. So I do.

 

July 2017: days before my first cancer surgery & reconstruction

Wishing: that my surgery was over, that I recover very well and that my year ahead will be a smooth path to have my mouth reconstruction over and there is no cancer found anywhere else. (quite a few wishes I know, but that’s my focus!)

Loving: the enveloping of care, concern and attention from many people since my cancer diagnosis and even though many of these people have never met me I know I am loved

Hoping: that Sydney house prices eventually settle as it’s a cray-cray scenario there (and in other cities I know) and I fear for those with a mortgage who are living  week by week

 

 

Sept 2017: waiting to heal & be ready for surgery #2.

Trawling: the internet for houses that we might buy ONE day …I think it is an obsession but I always want to be prepared.

Wanting: not much at all. No, that is a lie. I want to be planning something like a great holiday in my  our future.

Looking: quite self-conscious because of my mouth – post surgery – but….

Deciding: that is a small price to pay for being as cancer-free as any doctor can predict. 

 

Late November 2017: after surgery #2.

Thinking that the surgical team who care for me are very competent in their roles.

Feeling a lot more confident than I used to be about getting out and about up here and even taking myself to Hornsby recently.

Bookmarking all the wonderful comments that people make to buoy me up when I am feeling a bit down.

Waiting as patiently as I can for my long recovery and reconstruction of my mouth to be finished sometime in 2018.

Liking that I am learning, from my cancer experience, to be more patient than I was.

Wondering from how much my grandchildren have special memories of us, their grandparents.

Loving the blogging community I am part of and follow.

 

And to right now….happy and well…and ageing gracefully, I think, here we are: The Two of Us.

Do you think you’ve changed over the years too?

I guess it would be boring if we did not!

Denyse.

Link Up #247

Life This Week. Link Up #247

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: 28/51 Self Care Stories. 

You are invited to the Inlinkz link party!

Click here to enter

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

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Women Of Courage Series. #61 P.M. 80/2021.

Women Of Courage Series. #61. P.M. 80/2021.

Two years ago….around this time of year, 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.

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

I have met P.M. who is in her 50s and know of her story of courage from some sharing with friends. I applaud her decision to come forward and share this story of hers which, out of respect for others’ privacy, will be anonymous. P.M.  will come to read your comments which I hope you will make after reading to support this woman and her family member. And will be adding her comments for which I am very grateful.

I have  added some contact details below for helplines in New South Wales and Australia.

Thank you for sharing P.M.

This image was taken by P.M.’s daughter, then aged 14.

I thought it fitting to use today and have had permission to share. The same is for the collage: drawing by P.M.’s daughter aged 12.

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

 

I, and my husband, have needed to be courageous for our daughter who has experienced multiple challenges over the course of her lifetime. I have, and continue to be her advocate to ensure that she has the life she deserves.

At the age of eighteen, she was finally diagnosed with Autism Spectrum Disorder (ASD), Level 2.

  • The sadly tragic thing about this was not the diagnosis but that it took so many years to get to that diagnosis.
  • If she had been diagnosed as a baby or toddler she might not have struggled with eating (due to sensory issues that were never identified). Maybe she wouldn’t have screamed every time I tried to feed her or in the middle of the night for hours on end. Initial diagnoses – silent reflux and failure to thrive.
  • I had to be courageous then with all the guilt at not being able to give my daughter the most of basic of needs – nourishment. I had to be courageous when I was perceived to be nothing more than an over anxious older mum to keep seeking support because I just knew things weren’t right.

 

If she had been diagnosed when she started school, instead of being tested for hearing loss, she might have gotten the early support she needed to be able to focus amongst all the noise.

If she had been diagnosed at seven, she might have had help with social skills so that she made and kept friends rather than being seen as attention seeking.

Current diagnosis – language processing disorder.

If she had been diagnosed at 13, she might not have experienced significant dissociative events that took her out of school, and me away from my job, and be given another diagnosis – conversion disorder.

If any of the doctors and psychiatrists who treated her then had connected the dots, saw the value in further investigation into why this had happened then maybe she wouldn’t have missed a full term of school, lost three months of her life.

  • I had to be courageous for her then – flying with her to John Hunter Hospital when we thought she was experiencing multiple epileptic seizures and not knowing what was going to happen.
  • I had to be courageous when dealing with all the doctors who sent us home saying she needed psychological help but wouldn’t actually direct us to any supports.

If she had been diagnosed at 14 or even 15, even after all that time off school, she would have been able to achieve the grades that reflected her ability and not felt dumb as well as “odd or psycho”.

  • Maybe she wouldn’t have been bullied so mercilessly that she had a meltdown in the playground surround by students screaming and laughing at her while she ripped at her face and her hair.
  • Maybe she wouldn’t have started self-harming including the first attempt at suicide. Maybe we wouldn’t have had to pull her out of school again for her own wellbeing. More diagnoses added – depression and generalized anxiety.
  • We had to be courageous when again pleading with psychologists and psychiatrists to help her, help us help her, from believing she was worthless and broken.

We had to be courageous when we decided to leave our lives behind and head north to pull her away from the toxic hell she was in and just be a kid again, even if would mean that we would need to go back eventually.

If she had been diagnosed at 16 or even 17, after moving schools, she might have had a better chance of steering clear of the drugs and other risky behavior in an effort to fit in, to find someone, anyone who would be her friend.

  • Maybe she wouldn’t have been sexually and physically assaulted by one of her “boyfriends”. Maybe she wouldn’t have left school after one term of Year 11 or lost her traineeship because of her “odd” behaviours and perceived inability to follow instructions.
  • We had to be courageous when advocating for my daughter’s right to be safe and respected in her work place.
  • To drop everything to get to her when she was having a panic attack in the middle of street, to call 000 when she overdosed because she was done. And worse, having to be courageous in the ER to insist on further treatment when they thought it best, again, to send her home only 8 hours later.

Even after the diagnosis at 18, we have had to continue to be courageous.

  • By that time she was set in a cycle of self-destruction – drugs, risky behaviour, abusers and users, and more suicide attempts.
  • There were days we feared we would lose her for good and we felt alone and helpless. The hospital system didn’t want to admit her until she was almost 19, mental health services in our town were ill-equipped to give her the intensive sustained support she needed and there were few services that could support a complex mix of autism and mental health.

At almost 21, we can finally see that there is hope.

  • Thanks to NDIS funding and some amazing supports who believe in our daughter as much as we do, she has started to see that she has a future.
  • She has found a welcoming and understanding workplace and is training to be a chef.
  • She has found her passion – to make art on a plate. She has distanced herself, most of the time, from the bad influences and is trying to make better choices.
  • As we say, life is a work in progress and there are always dips and turns on the road to the future.

Finally, I want to call out my daughter who is the most courageous of all of us.

  • She has had to live this and I am in awe of her resilience.
  • She has survived everything that life has thrown at her and kept going despite everything.
  • Her diagnosis of autism has helped her realise that she is not broken, she is not a mistake. She is exactly who she should be – a pun loving, true crime and space obsessed, artistic young lady who deserves a happy future.

Her autism is and never was the problem – it was the misdiagnoses, the lack of understanding of how autism presents in females, and over stretched medical systems that created the hell she lived through.

 

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

This whole experience has changed me forever.

This fight to save our daughter, quite literally at times, has made me outspoken about the woefully underfunded mental health system, the lack of psychiatrists particularly in regional areas and the lack of supports for autistic young adults, again particularly in regional areas.

I have discovered that I never give up, particularly on my daughter, and that I will just keep pushing when things are not going well.

I have learned the value of speaking up and speaking out.

Before all this I was quite a private person who kept everything inside but I learnt early that it is not healthy or helpful to keep things bottled up, to keep the truth from the village that surrounds you.

How can we change the stigma of mental health, of autism, if we never speak openly about what we are going through? I have developed strengths I never believed I had.

 

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

When struggling with challenges it is important to learn as much as you can.

It is harder to fight what you don’t understand the facts.

I learned early that often the medical profession did not have all the answers or the time to dedicate to one patient so that became my job after years of blindly trusting that they knew what they were doing.

I have also learned that it is important to speak up, to not hold things in and pretend everything is okay.

Living a lie helps no one in the end.

You also need to learn to accept help, to willingly ask for it when you need it so that you have strength to survive the long game.

It takes courage to do all those things.

 

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

I am definitely more capable of being courageous when life calls for it – especially when it is to be courageous for my family.

While it doesn’t necessarily change the experiences, the challenges, being courageous gives you the determination and positivity needed to not give up, and to fight for a better outcome.

We know our advocacy for our daughter, to ensure she has a bright future even after we are gone, will not stop, cannot stop but will change as she grows and blossoms.

 

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

No-one knows how courageous they can be until the situation arises for you to step up, step in and work through the challenges presented to you.

It won’t necessarily change the challenges you face but it allows you to keep going, to keep fighting, keep finding hope in the darkness.

Just remember, that you never have to be courageous on your own.

Having someone there who will fight with you, take the lead when your batteries are flat, to give your other perspectives makes the challenge easier and allows you to keep being courageous for as long as is needed.

I thank P.M. and her daughter for this courageous sharing of their story. I suspect, from my knowledge, that it IS indeed much harder for girls and women to be accurately diagnosed. Yes to the fact that many of us have indeed trusted the medical and helping professions and now, as we see from your sharing, there can be an inability for ‘the connecting of the dots’ as you put it in terms of diagnosis. Thank you too for the included list of places for accessing help and knowledge.

I send my best to you all.

Thank you.

Denyse.

Places for help

Autism and girls – want to know more?

https://childmind.org/article/autistic-girls-overlooked-undiagnosed-autism/

 

https://www.autismawareness.com.au/could-it-be-autism/autism-and-girls/

 

https://www.yellowladybugs.com.au/

 

https://www.abc.net.au/news/2019-01-13/how-easily-girls-can-mask-the-autism-warning-signs/10701928

 

Autism and mental health – want to know more?

 

https://raisingchildren.net.au/autism/health-wellbeing/mental-health/depression-teens-with-asd

 

https://www.spectrumnews.org/features/deep-dive/the-deep-emotional-ties-between-depression-and-autism/

 

Mental health supports

 

https://www.beyondblue.org.au/

 

https://headspace.org.au/

 

https://www.lifeline.org.au/

 

https://www.health.nsw.gov.au/mentalhealth/Pages/mental-health-line.aspx

Joining with Natalie here for Weekend Coffee Share.

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