Tuesday 28th June 2022

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

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

Telling My Story. Image #8.

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.

 

Instagram has been problematic for me since I moved to a new Iphone. And this year, I went from two accounts to one. Made it easier to keep track too.

On this day, I stopped the car and took photo after photo of Flannel Flowers.

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.

 

H is 14, we cared for him from 4 months a few days week till school, R is now 12, off to HS and we cared for her for a similar time. E, is 8 and we cared for her for one year & Miss M, we got to know her from visits to us. LOVE these kids

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!

Lisa Greissl was a runner before her cancer surgery which compromised her left leg. Determined to be fit and well via exercise, she has become a rower and now, after completing events in NSW she is determined to be a Para-athlete and will be seen trying her best to become an Australian rep in the sport.

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.

Mum’s Birthday: 6 Dec. She’d have been around late 70s here.

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.

You can link up something old or new, just come on in.

* Please add just ONE post each week! NOT a link-up series of posts, thank you.

* Please do stay to comment on my post as I always reply and it’s a kind thing to do!

* Check out what others are up to: Leave a comment on a few posts, because we all love our comments, right!

* Add a link back to this blog in your post somewhere, or on your sidebar or let others know somewhere you are linking up to this blog’s Life This Week.

*Posts deemed by me, the owner of the blog & the link-up, to be unsuitable for my audience will be deleted without notice. These may include promotions, advertorials and any that are overly religious or political or in any way offensive  in nature.

You are invited to the Inlinkz link party!

Click here to enter


 

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest

Two Years Ago. Head & Neck Cancer. October 2018. 85/2020.

Two Years Ago. Head & Neck Cancer.  October 2018. 85/2020.

For this week, one week ago, and the next week on Wednesday I am posting a ‘review’ blog post mostly to remind ME of how far I have come in terms of the changes brought about in my life thanks to the diagnosis of head and neck cancer on 17 May 2017. The whole story is here. 

Using some photos I am adding my memories from the time.

Here I go:

October 2018.

 

Early October 2018 and I was off to Chris O’Brien Lifehouse with a LOT to smile about. I received the long-anticipated upper prosthesis of teeth on 21 August 2018 – some 14 months after surgery.

  • It was a cancer check day but also a chance to meet with Nadia from then Beyond Five – now Head & Neck Australia to discuss my prospective Ambassadorship as a volunteer.
  • Photo – top left. Then briefly caught up with then then Specialist Head and Neck Cancer Nurse (top right)  who had last seen me as a very raw new-to-head and neck cancer patient in July 2017. She was stoked! My cancer check went very well indeed (bottom left) with smiles and congratulations all-round.
  • How good it must be for the Professor (Jonathan Clark AM) and his Nurse Surgical Assistant and Consultant (Cate) to see a patient post surgeries…yes, all 4 they were part of…and my much anticipated S M I L E.
  • Last photo is me with Gail O’Brien, the late Professor Chris O’Brien’s wife whose vision it was to have this wonderful comprehensive cancer centre built and to tell her how much I appreciated the work and vision of her late husband…he was a head and neck surgeon too and my surgeon trained with him.

 

 

School holidays in October 2018 saw two visits from our Sydney-based family.

  • Much appreciated as always.
  • We entertain casually for lunch with their favourite snacks and foods and much chatter is heard.
  • Often we go outside for a play even though our yard is very small.
  • On this occasion the four younger kids (left pic) took home a special pot with some items planted and some crystals along with a few old fave toys from our Sydney house…and their younger days.
  • With the older group there is often some reminiscing and music too, particularly as the older grandson is a DJ.
  • I felt so much more at ease now I had the teeth in my mouth. It still took quite a bit of getting used to for eating but it was much better than before!

 

 

I was interested in attending a Look Good Feel Better Cancer Patient Workshop and once my ‘teeth’ were in I happily took part in a local event.

  • I did get some good advice and took away a swag of amazing free products.
  • What left me feeling somewhat disappointed was the fact that my cancer is so rare and not known.
  • These workshops were pitched at breast cancer patients more than anyone.
  • Some needed help with using wigs and scarves, others with how chemotherapy had changed their skin/hair.
  • I guess I need(ed) to be more grateful because I was/am doing well.
  • I wonder as I write this if these activities have now been stopped because of COVID and that is a shame because it was psychologically very helpful to us to be ‘seen as a woman, not a patient.’

 

 

It was, and still is, important for my mental health to have something creative to do most days.

  • I liked the idea of holding a mindfulness colouring class at the local library. I did get to have it, but it took so much box-ticking, I left it as a one-off.
  • However, I know I enjoyed being ‘teacher’ again.
  • My months of making bookmarks for the charity The Big Hug Box were always enjoyable and I must have contributed well over 500.
  • They were individually constructed by me and sent in batches to Lisa for adding to the boxes.
  • In November 2018 I took part in a packing boxes day at her house and met other cancer patients.
  • One got me to design some mandalas for a colouring-card idea she had. I was pleased to share my creations.

 

 

 

About eating. And drinking. I remember pre-upper prosthesis having all kinds of thoughts about what foods I might try with teeth in my top gums.

  1. I admit now, 2 years on, that some of those foods were just not a success.
  2. You see, as it was explained to me by my lovely Nurse, Cate, my mouth has more inside it than a ‘normal mouth’ and it cannot do all that it did.
  3. My prosthodontist had added a partial denture of a tooth on each side to hook into my remaining natural teeth on the bottom and this helps hugely.
  4. Some meals I tried and could eat (and still do) are  above, even though the hot meals are likely to be over 2 nights.

 

 

Keeping up appearances…was very important.

  • This trend went right into 2019.
  • In 2020 I do this occasionally.
  • But in between treatments, visits to Sydney for cancer checks and more, dressing well and with purpose was/is very important.
  • More important than everything was I was finally able to (and definitely wanting to) meet up with friends again. Yay.

There it is. Snapshots to help me remember what life as a head and neck cancer patient was like in October 2018.

Denyse.

Linking up with Leanne (whose image appears in this post!)  here for Lovin Life Linky.

 

 

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest

Three Years Ago. Head & Neck Cancer. October 2017. 83/2020.

Three Years Ago. Head & Neck Cancer. October 2017. 83/2020.

For this week and the next 2 weeks each Wednesday I am posting a ‘review’ blog post mostly to remind ME of how far I have come in terms of the changes brought about in my life thanks to the diagnosis of head and neck cancer on 17 May 2017. The whole story is here. 

Using some photos I am adding my memories from the time.

Here I go:

October 2017.

 

The way in which I recorded the times. My husband kindly took photos of me outside Chris O’Brien Lifehouse on the afternoon of our visit as a check-up in October 2017. It was the first time I had seen my head and neck surgeon since leaving hospital in July after the first major cancer removal and mouth reconstruction. Of course I brought cake! Cake is my appreciation gift to my medical and surgical professionals. What I see in ‘me’ is the way it was then. I had no way to smile and it was probably because of seeing photos like this that I finally went and brought properly fitted bras. Sigh. The photo of the drive back home over the Harbour Bridge is a great memory. One of relief too. However, glad I have this as we can no longer use iphones in cars without risk of huge fine.

 

 

 

Seriously I was gob-smacked at this image. WOW. My fibula, the shapes at the top, cut into 3 pieces and made into my new jaw by being attached with screws to under my cheekbone. The little dot-type images: one at the front, two on each side, five in all, are where the screws are embedded into my new jaw and which will, over time, hold the upper prosthesis I have now in place. This was so good to see however, as it showed just how clever my team is!

 

 

 

The first time I ventured down the M1 alone that October was for a very good reason. To meet up with my daughter and her two eldest daughters for morning tea at Hornsby Berkelouws. It is a favourite place to meet because it’s about an hour from our place and reasonably convenient for those who live in Sydney to meet up. I was still very new to what I might eat/drink but I managed a piccolo and a very small cake with icing. Lovely as always to see the family. I admit I was tired out. Pretty big deal only two + months since my big surgery.

 

 

 

Our daughter. Very proud of her. This lemon meringue pie – a firm family favourite – made ‘just for her’….to celebrate her completion of her Master of Education Teacher Librarianship. It’s pretty tough being a single mum to 4 and working generally full-time as a teacher and then teacher-librarian too. Not only that, she started a new school’s library. One book at a time. Many hundreds of times. Eventually to complete the last semester of the pretty gruelling regime to do a Masters on-line (and to keep her job) she took long service leave and “got the job done.” She and the four kids (3 are adults) joined her in the celebration of her achievement at Charles Sturt University Graduation Ceremony later in 2017.

 

 

 

In late October I decided I needed a ‘challenge’. A personal one. It seemed that I wanted to show off this new-to-me slimmer body and the enjoyment I was beginning to find in looking for clothes that actually fitted me. Of course, my weight loss was because 1. cancer and 2. I couldn’t eat properly but I was also not allowed to lose any more weight by my professional team. This instagram challenge took on a life of its own and over time I did this every.day. for many, many days as it helped me emotionally to see my improved look and demeanour despite the ravages of how my mouth had been reconstructed using part of my leg.

 

Glad to have shared this. I know long time readers may recall some of these images. Thanks for reading and commenting.

 

Denyse.

Joining Leanne and friends for Lovin Life Linky here. 

Joining here too: Esme’s Senior Salon link up.

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest