Sunday 26th June 2022

My A-Z. Taking Stock. 5 Years. #HNC. #LifesStories. 34/2022.

My A-Z. Taking Stock. 5 Years. #HNC. #LifesStories. 34/2022.

This is my first Taking Stock post in 2022 and I am taking the chance to recount the “adventure” that has been having had oral cancer, a form of head and neck cancer, for 5 years.

Here is mine. And the new-to-me logo and the list is at the end of the post for copying if you choose, along with this image being in the side bar of the blog.

 

But first, a story that is funny. Well, at least “I” think so.

When I saw the kind blogger Deb from here: Debs World paying tribute to my version of Taking Stock recently I was chuffed. Deb has been doing Taking Stock, the traditional one from Pip Lincolne , found here, along with my new-to-some A-Z version. I checked my list of prompts out, and the image I had on the blog…..and counted: 1 to 22…ummm there ARE still 26 letters in the alphabet, Denyse…so, oops, I have now amended!

And as I am off to see Dad again today in Sydney, I will be back to read and comment later.

2017 to 2022. Taking Stock of my Head & Neck Cancer. 

admiring the amazing ways in which my head and neck cancer team reconstructed inside my mouth

becoming more at ease now with the idea that my five years since diagnosis and surgeries and all are coming to an end in September 2022 at my final surveillance visit to my head and neck cancer team

curious to see how my continued mouth and prosthesis checks will go each 6 months for the rest of my life I am told

delighted that, in the course of head and neck cancer journey I have made many new friends and connected with them virtually or in real life so we support each other

excited to see my Professor Jonathan Clark AM and his surgical Nurse Assistant Cate Froggatt in September but 

feeling quite emotional as it will be my last ever surveillance check with them at Chris O’Brien Lifehouse

going is a useful word to use post cancer recoveries because I always say “I am going well” …covers a myriad of possible answers but requires little response because quite honestly, HOW MUCH do I really want to tell people..not a lot. I fear it may not be 

helping me or them to be perfectly honest because in the end sometimes a polite response is the best

imploring those who follow me to get a mouth check at each 6 monthly dental visit. Please do get to your dentist every 6 months. And also, see your GP about any suspicious pain/lumps/bumps too:

See here, and at the end of this post….

 

joking at times is an Aussie way of dealing with some really tough times isn’t it? We tend to play down what we find the most threatening. I admit, I was told, now I realise it was a joke, four years on, that when I got my upper prosthesis (teeth attached to the jaw that was made for me from my leg), that I couldn’t leave till I bit into an apple. Seriously. Nah, it wasn’t and no I cannot even do that these days….

knowing I was in the best place for me with the best people possible for my cancer filled me with both hope and confidence. Always.

loving that I could always get my surgeon into a selfie with me at our visits…

Prof Jonathan Clark AM.

making the most of my understanding of good health nutritionally as well as enjoying the food I can actually eat by paying attention to my health professionals after the first BIG surgery because they knew more than I did.

Ready….for the video made for head and neck cancer Australia with me sharing what I had learned from the dietitian.

next is to note how very proud I am to have come through such challenging health times (they were!) and yet I know now so much more about myself as a woman of strength and courage that may not have come about as they have…

observing that there is a fine line between being grateful for life lessons (this was a major one) and also that it has been so fortunate too that my cancer is as I understand it rare of rare (thanks Prof JC) and unlikely to return

posting on the blog has been a great way in which to let me share my feelings and experiences and also for others to support and cheer me on, and it is now a bank of posts under this heading for others looking for head and neck cancer information

questioning that this cancer is so not known and yet it is very much more common than realised, and many people die of a head and neck cancer because symptoms may have been ignored or dismissed by a medical or dental professional, so it’s why I continue to share, and hopefully a person …

reading this or a tweet or a facebook update may have information that is relevant to them or someone they know

staying  vigilant about my mouth care. I need to see my regular dentist every 6 months and the prosthodontist in Sydney too

trying to be less head and neck cancer focussed in my day to day life, which is why, when I became somewhat burnt out last year doing too much physically and emotionally sharing HNC news, that my…

understanding G.P., husband and CEO of HANCA were very kind in helping me see that I could still help and have some roles but no longer in person

viewing my images. I remain pretty obsessed with my changing face, smile and mouth over the years.

2017. July Major Surgery. Nov Day Surgery

2018. Day Surgeries: Feb & May. Upper Prosthesis August.

welcoming the ways in which people who don’t know about my oral cancer story can be informed more if they show some interest

X – you choose and mostly they do, and with my education love at the heart of what I do I am always there to say,

yes what would you like to know more about

Z – you choose and if there is no interest of course, I am respectful of that person. And, I sip my double shot small latte quietly!

Love this again: coffee sitting at a cafe. 2021.

Sunday 22 May, at Porter’s Creek I made this little 13 second video of gratitude:

https://www.youtube.com/shorts/WlluRTC6OhM

 

 

That’s my Take for Taking Stock.

Here is the list for anyone who would like to try it.

  • admiring
  • becoming
  • curious
  • delighted
  • excited
  • feeling
  • going
  • helping
  • imploring
  • joking
  • knowing
  • loving
  • making
  • next
  • observing
  • posting
  • questioning
  • reading
  • staying
  • trying
  • understanding
  • viewing
  • welcoming
  • X – you choose
  • yes
  • Z – you choose

Thank you for reading, commenting and also linking up a blog post if you had the chance!

Denyse.

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Five Years Ago. My Oral Cancer. #HNC. Part 1. #LifesStories. 31/2022.

Five Years Ago. My Oral Cancer. #HNC. Part 1. #LifesStories. 31/2022.

Interestingly there are hardly any selfies or images of me from before the cancer diagnosis. In fact, until I knew I had cancer, I was taking photos of nature a lot…as I tried to make peace with my inner stress. In fact, this photo, which is not too great, was taken on the morning of what would be the day of diagnosis as I was trying to make a daily photo of autumn challenge…it did not last!

Those who have been following me and this blog for some time will recall that in May 2017 I found out I had a rare cancer in my upper gums and under the top lip. I am now referring to the cancer as oral cancer, even though it remains as part of the head and neck cancer family. The full story is here. 

I was always going to write about this time…5 years ago…and here it is in the lead up to that day in May!

The bit of history behind the story is that I had been troubled by issues relating to soreness and some swelling in this upper gums that no doctor, dentist or specialist dentist could  find a reason for…other than keep it cleaner, use this mouthwash, suck these lozenges…..

And being the obedient patient…I did. Until I could no longer keep wondering what WAS hiding under the bridge of teeth. 

2017 was the year of more stress for me…and it was compounded by the pain and appearance of extra skin over the top of the bridge. My dentist, AB, was finally convinced by me, and he agreed that the only way to find out was the extract the whole bridge and the teeth. On 6 April that occurred.

By 26 April some of my bravery returned because that was ONE big thing I had done at the dentist, and I got over my fear of driving (IBS related) on M1 and saw my Dad after 4 months. This photo is the relieved me with a still painful mouth (that temporary denture was not fun) on my way home.

The person who takes lots of selfies not did not back then. In fact, I tried as much as possible to distract myself from worsening pain, gums growing and a general horrible feeling in my mouth until…

I couldn’t be distracted any longer and AB was seeing me after he’d been on holidays. But first, a visit to the regular  GP on 10 May who, after going through a few other health matters with me as I was leaving her practice for the one closer to home, THREW her hands up to her face when I showed her my sore mouth and gums without the denture.

Nervous? You Bet. Why?

  • Then Doctor, CS, who raise her hands in horror on Wednesday 10 May  and go “What…” and immediately tries, without success, to reassure you… “get to the dentist tomorrow as planned…and here’s form for CT of your sinuses….”
  • Dentist, AB, with whom I have a great relationship and joke a bit, says, seriously,   on Thursday 11 May “You need a biopsy of this from S. I already know that S is the Oral Surgeon, literally 10 paces back down the path from the dentist.

“right”, I say, with lots of questions but I hesitate to ask them…from my diary notes that day….

“Mouth – gums – inflamed & pretty puzzling to him . Going ahead with tests ordered. By Dr C – X-ray & CT (looking for cancer) 😧He mentioned HPV – what warts come from.. low immune system – maybe as I’ve been so stressed. Need a biopsy/ great not!
He said sockets are healing ok but slowly. Will see him after biopsy – which I have to organise.. he spoke of future might have to go to Westmead & I’m resistant”

  • Oral Surgeon. I meet SC on that Thursday straight after seeing AB…and she is very friendly and says, let’s do this tomorrow morning. OK…I say, but inside already feeling the stress of the tests at the X ray and CT place that will be in the afternoon.

But I Needed To See my “now” G.P. who’d been seeing me just on a month to de-brief…. Still “is” my GP…

Got myself quite stressed to point of tears after trying to make sense of what could be wrong with my gums so decided to see OG to catch him up due to transition from CS to him & having been to dentist AB.
He said tests are way to go & biopsy
Also said do anything different – dentist was keen for me to try more ibobrufen but that affects my gut.
He looked in my mouth & said it doesn’t seem worse than last week
He wasn’t convinced re HPV.
Couldn’t rule out cancer but getting tests essential & biopsy.
Once biopsy done & results in – consult with him & dentist.
He was kindly but couldn’t do much more do reassure other than I’m taking all steps he would suggest
Pretty stressed with it & so over it…

The thing is I had been putting up with much of this for 5 weeks after extraction and for months before that when no-one could give me answers.

 

Friday 12 May. How I Managed

….thanks to encouraging husband, who had to do his volunteer work for cancer council that day, my exposure therapy techniques, 1/4 valium, Immodium and sheer courage.

  • drove myself to Ourimbah (about 20-25 minutes from home) and arrived at Oral Surgery to be welcomed kindly by SC and her nurse.
  • straight into the chair. We spoke briefly. I knew there would be a numbing injection, then the biopsy (and I had one 2 years earlier).
  • once numbed up, SC did her work and then applied dissolving stitches and I was given kind care and told the results would be seen to as an urgent one…and I would hear from her on the Monday.
  • mouth was painful but at least something was being done. Some time at home, and tears too from the sheer weight of the emotional strain and then:
  • drove myself for the CT and Xrays. These were looking for cancer in the sinuses and jaw.
  • home….evening…tired out.

Sunday 14 May: Mother’s Day 2017.

Our daughter and three granddaughters came for lunch. I put on a kind of act I guess but in the photos taken that day, I see the strain in my face. As the family was leaving I just shared with my daughter that I was waiting on test results for my mouth the next day.

Monday 15 May.

I got the blog link up sorted, and live and my post had published. We kept to our housecleaning routine…although my eyes were on the clock and when I could ring the CT/Xray place. I did and was told all good. Come and collect them. Big relief: part one. Part two occurred later that day when SC, the oral surgeon rang to discuss the preliminary findings.

I remember thinking “OK, good but what about these horrid, growing gums”. She replied that over time she could help with cutting them back. And I accepted that for then, and because only our daughter and my dad knew I had the tests, rang them with the good news.

Tuesday 16 May.

A normal day in our version of retirement. My mouth was still sore but I felt relieved. I took some photos of the flowers in the back garden. I would have been getting back to my blog post and to those who linked up. Here is that post…just for the relevance…I did not return to writing Telling My Story for another YEAR! And here’s what happened next

 

Wednesday 17 May 2017.

B went to counselling at Lifeline. I was relaxing in my chair, just finishing breakfast when I got this call from the Oral Surgeon SC, who was working in a hospital at Wagga that day. SC spoke calmly and kindly, telling me that last night she received further results and she was sorry to tell me there was squamous cell carcinoma found in the gums. My initial reaction was surprise but not shock as something HAD to be found I guess. The time was 9.25.

And after a little weep, I was able to speak to lifeline, B came home and in the meantime my organisational self shifted into gear. SC had sorted a referral for a “Dr Clark” at Chris O’Brien Lifehouse. I rang his secretary and she said “His associate can see you tomorrow afternoon”. By this time, B was home and after a long hug, we agreed sooner the better…and took up that appointment.

I rang both my dentist AB and old GP CS to share the news. They were very kind and whilst they were sorry about it, there was a sense we were on our way to getting fixed/better….

My head continued to buzz big time and I wanted to share this HUGE news with my now GP, so we had a very helpful late afternoon appointment where his reassurances of me managing the trip would be OK…with the suggested immodium and valium…and B agreeing to stop at any toilet I may need…

Photo of my art:

And that is how I found out I had this cancer. I had no idea of why (there has never been a reason) but I learned over time, not to be concerned about that, just know you have this and that there are people with awesome skills who would  help me over the next two years in particular.

From my appointment on Thursday 18th May:

This is what they saw in my mouth:

This is where B led me to, for a brief minute’s respite to gain some composure after being given the news of what lay ahead for surgery. Window from level 2, Chris O’Brien Lifehouse, where clinic rooms are. This is looking at St Andrew’s College in Sydney University Grounds.

And this is what I signed….after having ensured I understood it all, as the Ass/Prof AE was concerned I might have been too upset. No, I said, I understand. It’s just been overwhelming….B had great confidence in the men he met…and still retains the same respect for them.

Some info: This surgery would not happen for another 7 weeks. I will write about that in July. But here is some information from my 2 and a half hour consultation.

Maxillectomy: we are going to take all of the upper part of your mouth inside. The jaw, the gums and remaining teeth and, oh yes, the palate or upper part of your mouth…

LEFT (in the end it was RIGHT, because CT found blood supply to be superior there, to lift the flesh with blood vessels…& skin grafts and dental implants…

(and funny story, it was ME sharing with them IN THE ANAESTHETIC bay some 7 weeks later, that the permissions were for left leg but they were using right…details me hey! Anyway, I was happy to comply with the written changes ON THE MORNING…waiting for THE SURGERY…and signed away)!

And the fibula was removed to form the jaw: all to happen in theatre and skin & flesh from leg would re-construct me an INSIDE of MY MOUTH….

Sneak Peak: I did not get to see how this looked until October after the first surgery! It blew my mind!

Image via CT..top is my upper jaw and 3 sections of bone from my fibula with 5 implants

Thank you for reading this far…if you did…and I will return with some 5 year updates that have meaning for my life now, in recovery and someone who has had cancer. I tend not to use the survivor or any warrior type words.

Denyse.

Denyse Whelan Blogs Is a Community

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

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

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

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

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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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Gratitude. A Word & A Feeling. #Head&NeckCancer #Recovery. 82.1/2021.

Gratitude. A Word & A Feeling. #Head&NeckCancer #Recovery. 82.1/2021.

I occasionally add a post in between planned ones as I am doing today, 6th July 2021.

The reason is how grateful I am feeling and wanted to express this on the blog as I have already shared via my social media updates.

Today is a special day in my life.

6th July 2021.

It marks the 4th Anniversary of the first, and very complex, surgery for the cancer in my upper gums and under the top lip to be removed, along with ALL of my upper jaw and palate.

Yes, what an occasion. Oh, and in case you did not know, I also had a reconstruction in that same 11 hour surgery which harvested my right fibula, flesh and skin from my right leg and added those to make me an upper mouth. Much more to it than that, but I am here to tell the story that it did, for me go well.

I had no idea really how I would go in recovery but the fact that I had complete trust in my team and their planning and their work, and could see that I was in the best place possible for this to happen all helped. Greatly. I am a worrier by nature but over time, learned that with that my job was to keep the healing going, taking care of my emotional health and doing all I could physically to recover. There are many blog posts and they are all here.

Today though is a sharing of my updates from yesterday and today.

5th July Memories.

The day of pre-admission to Chris O’Brien Lifehouse for my head & neck cancer surgery & reconstruction the next day. Never forget how it was. A relief in many ways. It had been 7 weeks of waiting. For planning, software & 3D model for my mouth. Not much sleep that night. 4 years ago. I already felt I was going to the best place for what was to happen. That instilled so much confidence in me and my husband having been here for the discussion of my surgery with my Professor and team.

Before AND After Images: 4 years apart.

One very special place I have visited over the 5 years we have lived here is the Bridge over Budgewoi Creek at MacKenzie Reserve.

The first image of of the hair-prepped for long time between haircuts, late June as I contemplated and considered what was ahead. Yes, I was scared but I also knew there was nothing else but to be putting one foot in front of the other and moving forward!

The second image, is from today (I do go here quite often but made a special trip today) to give my thanks for how my recovery and wellness is. I did not smile deliberately as I wanted to show my top lip for how it really is. Smiling of course is better…but I acknowledge that cancer took quite a bit of under that lip and 2x skin grafts have helped.

Today I shared this collage first.

It’s made up of four progress images from July 2017, July 2018, July 2019 and July 2020. Don’t my surgeons do an amazing job? And of course, my prosthodontist and my own body in recovery. Very, very grateful.

Selfies are great for monitoring progress for a visual person like me who needs evidence, as I waited… learning that TIME does indeed heal but patience is also necessary!

This impatient person learned, mostly to be a patient patient over the many months, trips back & forth to Sydney: Westmead Oral Sciences & Chris O’Brien Lifehouse

The person who helped me through these trying times… to learn patience is my husband!

 

Thank you Bernard for your patience & time given to me for “selfies”💙

 

Today we marked my 4th anniversary with some pics & a gratitude letter to my HNC surgeon & nurse… then I drove to Budgewoi to “exercise” but to mostly give thanks. This bridge at Mackenzie Reserve is a special place for me.❤️

 

About gratitude. Again!

I have posted many times about gratitude. I have found it a practice that when I use it, I am helped greatly by finding at least one thing to be grateful for in a not-so-good situation. Today though I feel full. In a good way. Emotionally. I feel well, and I really could not ask for me. It’s a feeling for me. My husband knows I remember days and dates and he wanted to know where today stood in terms of day, birthdays, Christmas etc and I said…after some thought:

Today is on top.

It is the best.

I am so grateful and I am sharing this gratitude in my way here by blogging, telling people I love and sharing as best as I can. From my post back in early 2020.

 

My 2020 Word of the Year. I Still Have It in 2021!

Thank you dear blog readers and commenters too, you all make a contribution to my healing and wellness.

Denyse.

 

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