Tuesday 15th June 2021

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

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

The backstory first:

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

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

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

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

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

 

June into July 2018.

About my mouth.

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

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

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

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

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

Daily Routine Helped.

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

Life went on.

In between times, I did not sit around.

Actually I do not doing sitting around very well.

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

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

School Holidays. Visitors. 

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

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

 

Head and Neck Cancer: Sharing The News.

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

I did.

Thank You: No Words Are Enough.

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

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

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

August 2018. How LONG?

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

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

I smiled for a LOOOOONNNNNGGGG time.

First time I smiled….

 

After an adjustment from my prosthodontist.

September into October 2018.

I Could Not Stop SMILING.

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

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

What it was not.

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

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

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

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

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

November into December 2018.

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

Back to schools!

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

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

We hosted Christmas.

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

What Would 2019 Bring?

January 2019.

Birthdays!

Always birthdays first…my Dad…95

Then our son 40

And our grandson 18.

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

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

February 2019.

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

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

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

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

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

March into April 2019. 

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

I had to learn to add in time outside.

In nature.

Taking walks.

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

Remembering my late Mum’s death anniversary here.

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

Reality of my reconstructed mouth….

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

Thank you so much if you made it this far.

I appreciate that!

Denyse.

Joining with Natalie here for Weekend Coffee Share.

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

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

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

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

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

The backstory first:

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

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

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

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

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

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

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

December 2017.

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

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

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

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

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

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

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

Finishing 2017 and Welcoming 2018.

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

February Surgery. March Recovery. 

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

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

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

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

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

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

One Step Forward. Four Steps Back.

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

For about a day or so.

 

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

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

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

March into April 2018.

House needed packing up.

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

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

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

Moving.

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

What May 2018 Brought.

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

How Did I Manage My Emotional Health?

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

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

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

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

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

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

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

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

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

the May Surgery

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

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

How Did The Rest Of May Proceed?

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

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

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

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

Oh gosh. What’s next?

June 2018 into 2019 that’s what!

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

Denyse.

Linking up here with Leanne for Lovin Life Linky

Joining with Natalie here for Weekend Coffee Share.

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How Am I Grateful? 2/2020.

How Am I Grateful? 2/2020.

It’s an interesting question!

One I find hard to answer in summary except that I will do what I can here now!

In the first blog post of 2020 I wrote this:

It was a long read…which I did intersperse with photos to illustrate my message – teacher-me!

However, I know that for some gratitude seems ‘oh so on trend’ and what might be next.

Well, I am going to say whilst I do not mind being up with the trends, gratitude has been around for far longer than I have…and any other influencer..(joke).

And gratitude, just like any mindful practice does need to be practised and noticed and felt. Every Day.

 

But what about this? 

As I write this post, it’s Saturday 4 January 2020 when it seems more than I can imagine of Australia is burning. Fires are consuming towns, rainforests, fields, mountains, grassy slopes and all in its path. That path has included a number of people (some not yet accounted for), hundreds of dwellings, millions of animals and more. It is 43 degrees outside here and around 3 streets away the power is out. So far our house is not affected and the air-con is running.

I do not find this a comfortable place to be in my mind and in my body. I made this meme ages ago to remind me that this is what I have to do. If I cannot, then I am fighting an unwinnable fight.

How on earth do I ‘sit with this?’

  • I noticed that my mind was starting to go down the path of ‘what ifs’ and ‘o. m. g.’ and my body started to tighten.
  • I felt teary and a little out of control of my emotions.
  • I knew that I could cry, tell my husband, seek answers to the unanswerable….but what then?

So, I took notice of my mind and body’s signals and did a few things I know that can help.

  • I am better when I am just painting some lines or strokes…on a page…it seems that in itself for me that is calming
  • I did just that on a large page
  • I came here, to share some of my words. The blog is good for that!
  • I told myself that it is OK to feel scared as these times are frightening
  • However, I also told myself that the evidence is here that I am safe, well and cool.

Strategies which work(ed). For me.

I have just told my husband – the one who would have had to help me through in the past – and of course he is pleased I can see life and its challenges better these days. I am grateful that he was patient enough in the past years to help me see/feel/be grateful even when I had no real idea.

Now, I feel better physically.

I will do some more art.

In fact, I used some of that energy I needed to dissipate and cooked some meals for me, my husband and dad.

And I will realised that I can send out loving kindness messages to people who really are doing it tough today, no matter where they are.

I am grateful that I know this practice and it works for me too.

For you! And you too….sending loving kindness.

I now know, it is not about ‘the actual words’ but the intent. The sharing of our messages of well-being, hope and love for each other.

The human connections.

What are you grateful for today…and every day?

Denyse.

Joining each Wednesday with Sue and Leanne here for Mid Life Share the Love Linky.

On Thursdays I link here for Lovin Life with Leanne and friends and on Fridays, it’s Open Slather here with Alicia.

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