Telling My Story. Ch 26. Final. Sept-Dec 2021. 6/51 #LifeThisWeek.  8/2022.

The backstory first:

Nearly FIVE 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 Six. Telling the story, Sept-December 2021 for the final time.

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 photo in March 2021…taken overlooking the harbour at Dobroyd near where I grew up close to Manly N.S.W.

September 2021.

Introducing September 2021. It was the third month of lockdown for us here on N.S.W. Central Coast which was part of Greater Sydney and restrictions. No hairdressers, no shops open for browsing, keep close to home, exercise away from home within Local Govt Area is Ok….and for me, the telehealth annual cancer check.

This image here sums up my desire to ‘keep it real’ for my appearance as well as to record the various places I visited. I got great news from my head and neck cancer team, via the phone, and that is unless anything changes for me, my NEXT visit in September 2022 will be my LAST visit. I am still recovering from that news! “I will miss you” I said to them. Apparently that is very normal!

The remainder of the images that form memories as part of Telling My Story, will have information under them.

To keep us as safe as possible, during this particular lockdown we approached going outside/away from the house, following the rules.

• Only one of us went out for whatever that purpose was (shopping, doctor, exercise) once a day.
• And we deliberately limited our exposure to potential Covid by only visiting two local stand-alone supermarkets.
• We (I) missed some chances to shop for crafty items and gifts to send in care packages (we did this twice in September) and for that I visited a Reject Shop.

 

October 2021.

Oh my goodness, it was getting  closer and closer to “opening up” again here in our part of N.S.W. and in Greater Sydney.

• We still could only travel inside the local government area of Central Coast.
• However it goes from the M1 at around Mt White in the south  to Lake Munmorah in north and across to the coast at many places.
• Even so we decided to stay close to our ‘local area’ comprising of Wyong, Norah Head, Hamlyn Terrace and Toukley…until I had enough and did a couple of solo road trips south to where we used to live.
• To pick up some items, and to have a look around again at where we lived from January-November 2015.

On 11th October 2021, we were free again to drive to Sydney. However, my Dad suggested I come a couple of days later. My husband was fortunate to get his HAIR CUT this week, and I still had a rather agonising two more weeks’ wait as my salon needed to have all working there to be double vaxxed.

I enjoyed that experience in late October, and could actually show my face with pride when we visited our son’s family. I was too embarrassed by my LONG (for me) locks when our daughter and her youngest visited pre-hair cut. No photos….

So, here are my memories.

Head and Neck Cancer is never far from my mind…even though I am well.

• I assisted in the promotion of the submission by Head and Neck Cancer Australia to all Federal M.P.s by sending my story with head and neck cancer (page is here) too. I heard back from several, and some invited me to meetings, along with CEO Nadia Rosin.
• Unfortunately I was unwell for one face to face meeting but did get to the Zoom meeting with one M.P.
• It is hoped that we will be invited to Canberra (after 3 postponements due to Covid in 2021) to share more in 2o22.
• I will not be attending. See *further in post
• However, there will most likely be a federal election too…so we will await not only that outcome but to see how the future government might be in terms of financial assistance to this Australian head and neck cancer charity.

And by the end of October, the best thing happened. We got to drive to outer Sydney to see our son and his four kids on the acres where he lives.

 

November 2021.

We are now into my birthday month…but I seriously only celebrate on ONE day. However, because of my history with anxiety and head & neck cancer I tend to look back and recognise my developments and changes. Here’s what I mean as an example:

 

We continued our plans to have a drive somewhere each second Friday and here’s a couple of photos from those times.

And some excursions of mine…locally to beaches, the lake and more:

Visiting Dad means frozen meals made by me for him, and morning tea I bring. He enjoys the chat and the company and I feel better for having helped him too. Sometimes I do a trip back down MY memory lane living near Manly and the Northern Beaches.

Whilst it’s been good to be out of lockdown, Covid19 risk remains and we wear masks inside any building, and the shops, and use our phones to check in, and show our vaccination status. I started having a coffee out, we enjoyed John Doyle’s book. Me via Audible, B via the book. Flowers from the garden to make into dried flowers, over time. Our serious and grown up day of signing new wills and Powers of Attorney and Legal Guardianship, and two pieces of furniture made by Bernard.

And now: love capturing nature and then making collages.

And I enjoy making collages of all the people I love too….question, where is the one with eldest Grandson?? DONE! And I enjoyed another coffee catch up with my friend, and the 3 eldest grandkids’ Granny too. They asked, “do you talk about us?” No, not much, we talk about how it is getting old(er)!

Joining in with The Big Hug Box for a packing day.

• I last did this in 2018 and Lisa Greissl’s ambition to help others when she was recovering from a very rare cancer is an on-going project with success after success.
• She was a recipient of a local large shopping centre grant of $10,000 enabling over 200 Big Hug Boxes to be donated to those with cancer in the Hunter region of N.S.W. Covid restrictions changing but still with rules, meant she could have around 12 people join her at the cafe she & her husband now run.
• Info about The Big Hug Box can be found here. And Lisa’s story as a Woman of Courage here!

Happy 72nd Birthday, Denyse!

I was very grateful to spend a quiet and lovely day having morning tea out with B, and receiving texts, phone calls and a card (thank you to my bro and SIL) along with Facetime in the evening with our kids and their kids…separately! Knowing you are loved and cared for is a blessing and I am grateful for their presence in my lives. Dad always calls too, and he rang later in the day.

December 2021.

This month brought weather that felt like Autumn or Winter. Accompanied by heavy rain at times, we were OK locally but many around N.S.W. were not. Flooding, flash floods and wild storms caused a lot of havoc. At the time of writing, it is 20degC and not at all summer like! However, as I edit this in early January, we eventually got to summer weather but with added humidity and rain. Not great beach weather.

Christmas creeping up on us. And we don’t mind as it tells us the year we’d perhaps like to forget much about, it nearing the end.

And it’s time for school presentation days, graduations, formals, exams and farewells…each needing to be done within Covid restrictions.

• So tiring too. I felt for teachers and principals as they had so much to do and then it could all fall in a heap if there was a case of Covid reported.
• Despite teachers and those who work in schools required to be fully vaccinated, and masks being mandatory, it does not stop people actually getting covid and at the time of writing a new variant has been found and case numbers are rising.
• So far, fingers crossed, no-one in our family has been affected. By January, there were some with Covid.

Keeping the memories happening for me by making photo collages….

My find for learning and reading..is Brene Brown’s latest. Loving Atlas of the Heart so much.

Head and Neck Cancer: My work, my condition and more is never far from my mind.

I had been part of the inaugural Choir: Raising Our Voices for Head and Neck Cancer Australia and whilst it is elsewhere on my blog, I am leaving the video here too.

As a result of putting some information about my story, and how I can share about Head and Neck cancer Awareness, I have my first invitation*  to speak to a Probus Group in Sydney’s west in late April 2022. If this goes well, and the news is something that helps others, I will seek more opportunities to do so. It’s free of  course but it’s a distance to travel so I will see how much I want to do this. I now have a “Speaker’s CV”.

*Since writing, I have reviewed my ‘doing’ ideas and they are being stopped..in fact, I am doing to stop most if not all plans for travelling to be a speaker or participant. I have been not taking into account how much my inner health is affect, and that I cannot eat well at all unless I am at home. So, that’s it. Learning to BE. Again.

And still, even more news from Head and Neck Cancer Australia when A/Prof  Bruce Ashford, Board Member and Head & Neck Surgeon spoke on Sunrise about the rising numbers (no known cause) of young women being diagnosed with cancer of the tongue. Not HPV either.

My own cancer site was a bit sore, even though I care for it as much as possible so managed a late December appointment to see my Prosthodontist in Westmead. I was relieved all seemed well and there is no sign of any disease (as he said, but it implied cancer). Phew.

I came home on a relieved ‘high’ and with so much gratitude which was tempered within 24 hours to hear news of its return in a dear friend. I won’t name her.

Late December including Christmas. 

We got our planned boosters for Covid earlier than we thought thanks to our kind pharmacist.

We were on target for visiting our daughter’s house for Christmas Day, where we would see all of our family: kids and their kids…for the first time together at Christmas since 2014…until…

23 December, late in the day, I began to feel unwell. Like a “virus”. Lethargy, cough, aches. With a virulent strain of Covid called Omicron seeing a HUGE spike of case numbers daily in N.S.W. from the hundred to the thousands in a week, that meant a covid test. I drove from home very early to one centre on Christmas Eve, and despite it showing it was open on the website the night before, it was closed. Those of us who lined up in our cars for over an hour, had to leave and find another place.

These photos are from late December, early January experience of mine.

That time I went where I probably should have in the first place, to Wyong, and had a long-ish but not intolerable wait of over an hour, and got my test done. Still feeling so unwell, our plans for Christmas were abandoned and we stayed put.

The last week of December 2021.

It was boring, predictably, because of Covid and the need to be mindful everywhere we went (or did not in the end). I enjoyed, just on two occasions, a coffee sitting down at a cafe …after a short browse for books…until I stopped doing that because of ‘getting pinged’ by the NSW Service App. Obviously it was working but I had no symptoms therefore no need to test.

Testing…testing ….was a ridiculously awful time for many thousands of us here in N.S.W. as the pathology places buckled under the huge numbers of tests, and their drive-in and other places closed early or did not open due to lack of staff.

Whilst I detest ending the year on a pretty negative note..hey, Covid negative is a good result for anyone…I would like to hope, that in 2022 we can see ourselves coming out of it with the notion of ‘living with Covid” one that is possible. As my husband says ” we live with the flu viruses, and we have our annual shot but it doesn’t always work but we take that chance”.

Here’s the collage of my new blog photos for 2022. Changing the subject!

The posts for Telling My Story end today…..

But before finishing I want to remind myself of a few things. Where I began to feel changes happening within me that seemed strange and yet I  kept on thinking  the professionals I saw knew more than I did. Not re-telling my story but remembering the WHY and WHEN of beginning this process of sharing words and photos from my life, at age 65.

Acknowledging The Shock of My Cancer Diagnosis & Challenge of Brutal but Necessary Surgeries. 

I have taken till this post to share with you all how hard it was to both acknowledge and manage my emotions with the shock diagnosis of a rare cancer back in May 2017.

I also took me some time to learn more about the qualities of the cancer as was found, removed and sent to pathology. Nothing like having the full pathologist report but it took me some years to look at it. I just kept going because I was 100% confident of my professional team. I even called my cancer #squamouscellcarcinoma of the upper gums and under the top lip. But it was not quite like that. It took me till year 5 since diagnosis to read more, and to now share here what it was:

T4N0 verrucous carcinoma upper alveolus: is on my report. T-tumour 4 – cm area N nodes 0 none found with cancer. 

Verrucous carcinoma is a relatively uncommon, locally aggressive, clinically exophytic, low-grade, slow-growing, well-differentiated squamous cell carcinoma with minimal metastatic potential.17 Dec 2017

The alveolar ridge (/ælˈviːələr, ˌælviˈoʊlər, ˈælviələr/;[1] also known as the alveolar margin) is one of the two jaw ridges, extensions of the mandible or maxilla, either on the roof of the mouth between the upper teeth and the hard palate

I now have greater understanding of the ‘where’ the cancer was and that it has ‘cauliflower’ like appearance because I could see that under the top lip. Knowing I was female, non-smoking and non-drinking made me “rare of rare” my Prof told me once. It appears that other reasons a cancer like that could form in my mouth as that I had a bridge attached to the upper teeth and over time that could have caused severe irritation and I was often told I had candida. I prefer to take my Prof’s word that sometimes we will never know.

Doing this here makes me proud of how far I have come and how much my life as altered due to this cancer being found in the weeks after I decided to Tell My Story. And why there was a year’s gap.

Thank you dear readers and commenters. I have been delighted to see how my life story is of interest.

Yes this is the end but no not quite. Given that as a blogger I am choosing what I write about I am planning now to do a month-in-review post each end of month so, yes, in some ways life, like the stories, goes on.

Denyse.

 

Life This Week. 7.2.2022.

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