Thursday 2nd December 2021

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

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

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

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

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

The backstory first:

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

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

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

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

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

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

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

December 2017.

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

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

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

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

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

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

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

Finishing 2017 and Welcoming 2018.

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

February Surgery. March Recovery. 

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

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

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

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

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

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

One Step Forward. Four Steps Back.

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

For about a day or so.

 

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

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

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

March into April 2018.

House needed packing up.

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

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

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

Moving.

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

What May 2018 Brought.

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

How Did I Manage My Emotional Health?

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

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

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

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

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

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

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

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

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

the May Surgery

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

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

How Did The Rest Of May Proceed?

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

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

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

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

Oh gosh. What’s next?

June 2018 into 2019 that’s what!

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

Denyse.

Linking up here with Leanne for Lovin Life Linky

Joining with Natalie here for Weekend Coffee Share.

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

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

The backstory first:

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

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

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

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

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

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

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

Last time, I ended with these sentences:

And that is where this Chapter ends.

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

Wednesday 17th May 2017. The Day.

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

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

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

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

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

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

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

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

What Happened After That News.

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

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

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

How to Wait.

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

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

Will I Blog About Cancer?

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

How Will My Life Change?

I think it already had.

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

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

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

First update after surgery is here.

Second update after surgery is here.

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

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

But What Else Happened?

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

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

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

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

But wait, there is more.

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

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

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

Being a Part of Celebrating Women.

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

 

In a book! Me. Wonderful

More Surgery. More Recovery Time. 

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

November 2017.

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

Happy 68th Birthday and Congratulations to Our Daughter. 

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

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

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

Thank you for your interest, comments and support.

Denyse.

Link Up #236

Life This Week. Link Up #236

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