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.