Wednesday 12th May 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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Comments

  1. How you coped with the continual uncertainty I’ll never know. It would have done my head in.

    • Thanks Vanessa. It truly was hard and I needed lots of help psychologically to deal with what I couldn’t control.

      Interestingly, it was the psychologist I saw back in 2016 who taught me about facing the fears I has re IBS and travel, and in that I used aspects of exposure therapy.

      I also have a very very helpful and calm spouse…and in those initial weeks and months needed that presence even more.

      It was better, though over time, when I could see and feel that things were being done for me to help and that my job was to be “patient” which did not come easily.

      Thanks for your support back then….and now, I remember it all.

      Denyse.

  2. There is a saying ‘Someday your story will be someone else’s survival guide’. That’s why telling your story, or stepping in to help people is so important. It’s not paying back the person that helped you, it’s passing on the help to someone else. Like a life long chain…Love the pic of you on the boat. It made me smile!

    • That is a great way to look at it, and thanks for that as I was beginning to feel that I was boring people. However, it will remain an important project for me, and in two weeks I will be caught up till the end of 2020.

      I deliberately did 2020 during last year as it was easier to remember and I think 2021 will be one I will do in parts too.

      Thanks Lydia for being a kind and caring blogging cheerleader of mine.

      Denyse.

  3. Hi Denyse, thank you so much for sharing your story. I’m humbled every time I read a chapter of your life. You’ve been through so much and you still have a smile for us all. I pray that life will be kinder to you in the coming months and years, and that you will spend less time in the doctor’s surgery and more time with your family and friends and enjoying all that life brings you. Take care and have a lovely weekend.

    • Thanks so much Cheryl, those words are very kind and comforting. I have been diligent about getting it all down…and then I will leave it printed out for family and me for future reference.

      The blog has been, as my friend Rebecca suggested, the ideal way to record my memoirs.

      I hope you are going well too.

      I am spend less time at Drs and more time doing art, going out for a walk and generally picking up life for fun activities now I am retired.

      Denyse.

  4. Glad you made it through and can be looking back on this now. We just made a big move and I can imagine how stressful it would be to have to move with all you had going on.

    • Thanks so much Deborah. I dread the idea of doing another move from here BUT, we cannot say never can we.

      Yes, there is something to be said about the stress of leaving the known for the unknown and given that I was in pretty early recovery mode, I now think I managed it pretty well.

      Take care and I hope things in your transition go well.

      Denyse.

  5. Denyse, You’ve been through a lot and you’ve come a long way. From your story, your husband and the medical team are amazing. I’m glad to hear you extended your house rental as it means you don’t have to move again for a while. Thank you for sharing. #WeekendCoffeeShare

    • Thanks so much Natalie for sticking with my story.

      I appreciate your kind words and observations. Yes, husband and team were essential in those early months cheer-leading me on. It worked!

      Love the idea of staying put too. This is an ideal house for us even though initially I didn’t want to rent, it is working out.

      Thanks for your link up.

      Denyse

  6. Oh my gosh, Denyse, your legs look so painful. I’m so sorry you had to go through all of that pain. I don’t know how you coped. You were so brave. I’m just sad seeing all of that. My mom went thought so much with dialysis and cancer, but even she had nothing like you did. God bless you.

    • Oh Marsha, there were times the leg was painful but I was given such great support and knew as time went on things would improve.

      They did.

      I am pretty independent and getting out to drive was high on my list. Using my right leg and needing right leg to do controls as we drive on r h side in Australia. Around the 6 weeks of recovery mark when I was no longer in the moon boot much, my husband said ‘here’s the keys’ and I did it. Felt weird as it had been a while but I got used to that pretty quickly.

      I am sorry this brought back tough memories for you and of your Mum.

      The next two instalments – 29 April & 6 May – see the end of this part of the Memoir. It’s OK not to read nor comment. I understand.

      Denyse

  7. What a journey you have been on. Wow. My mom passed away 17 years ago from cancer, but I think had blogging been more popular during her journey, I think she would’ve started a blog to journal the journey and her life. She loved to write. Thank you for sharing.

    • Thanks so much Kirstin. Sometimes I look back too and go, woah…I did that! But yes, having the blog truly helped and still does. I am sorry about your mother, yes, blogging can help heal as well as make the records for us.

      Denyse

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