Tuesday 28th June 2022

What Is 17 May All About? #HNC. 5 Years. 32/2022.

What Is 17 May All About? #HNC. 5 Years. 32/2022.

It’s 17th May 2022 as I write.

I wasn’t planning a post but this date “made me do one”.

It’s because 17 May 2017 was a hugely significant day in my life, as it was the day I was told I had squamous cell carcinoma in my upper gums.

The story has been told in a few places, here for the first post,  by me, but today I want to use pictures more than words!

Marking the time I knew I had cancer.

 

My progress: 2017 into 2019

 

2019: 2 years ‘reward’

And going to Sydney to see Hamilton as my 4th year ‘reward’…very special:

 

Each May, I have both remembered and because of my relatively good progress with recovering from this form of cancer I had, I like to appreciate my teams and my healing body too. And to my husband and family and friends (on-line and off!) : you all help my healing with your kindness, love and care. Thank you.

And now: 5 years on.

I admit it feels somewhat surreal. Perhaps I couldn’t ever see it coming? No matter, it has arrived. I am here. I am very glad to be well. Here’s my photos from today: Tuesday 17 May 2022.

Special way to remember:

The word ‘heart’ means a great deal to me after using the song, Heart, as part of my self-care and courage building on my many, many drives to and from Westmead for long stays in the chair…and of course, heart is connection to those I love, and who love me…and the universal message of love is about caring.

My ‘gift’ to me is this: a bracelet with links of hearts and infinity symbol because love is forever….

Thank you to everyone from my heart.

Denyse.

17.05.2022.

Joining in with Natalie for Weekend Coffee Share later this week.

Thank you Natalie.

https://natalietheexplorer.home.blog/

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April Brings Autumn Memories. #Life’sStories. #LinkUp. 27/2022.

Welcome to Life’s Stories. I hope you enjoy my story and link up yours too for me and others to enjoy.

April Brings Autumn Memories. #Life’sStories. #LinkUp. 27/2022.

Some months and seasons make great memories.

Photos and stories shared.

This post looks quite a way back to the years 2012 to 2016.

And then to 2017. A very worrying time for me, personally. Cancer would be diagnosed in mid May 2017.

2018: that meant head and neck cancer recovery and moving to a new place.

Onto 2019, 2020 2021 for more stories…..

And finally, this Autumnal April 2022. 

April and Autumn.

Autumn is usually very pleasant and cool in the evenings with lovely days. This has NOT been the case always…as you will see. In April 2015, we were inundated by an ‘east coast low” weather pattern that left this:

and us with no electricity or phone (mobile could be used at times) for almost 5 days!

 

It has often been time for the Royal Easter Show in Sydney. A big tradition in my life, and I made it one for our children and grandchildren over the years. Once the venue moved to Homebush after the Sydney Olympics in 2000 it became a pleasure to visit because I could park the car close to a bus stop and we would travel directly to the Show on an all inclusive ticket. These images are from April 2014, the last time I went to the Show.

 

2012-2014 we were living in our family home in Sydney’s north west and caring for grandkids. Autumn leaf play in 2012 with 2 dear grandkids…

2015-2016 we had moved to the Central Coast of N.S.W. and some of the grandkids visited.

And on 25 April it is A.N.Z.A.C. Day. Remembering the sacrifice of men & women from Australia and New Zealand who helped keep us safe.

2015. Centenary of Australia & New Zealand at Gallipoli.

But I am never sick of searching for Autumn trees, leaves and even having a go at painting them!

April 2017.

The garden where we were living then had great Autumnal displays & I even painted the pansies:

 

And I loved getting this image from the local bridge area:

 

I had a very sore mouth as I had already been through the removal of the upper bridge and teeth and yet…nothing was better. In fact it was worse but…I smiled (uneasily) on….

April 2018. Moving House.

We were grateful to find a new, and more modern house where we still live. Moving still sucks…and with me in treatment for more processes of my mouth reconstruction it was a particularly stressful time for me. Highlights here were family birthdays and school holiday visits from grandchildren with their parents.

April 2019.

I went to Newcastle Writers Festival and was well into adjusting to my upper prosthesis. I continued to enjoy art. And we had some pretty flowers growing outside.

April 2020. Covid Is Here.

My first Covid test, we got our flu vaccinations. We had no idea of what was to come in terms of lockdowns and travel restrictions but we stayed put. One granddaughter visited briefly on her way to stay with other grandparents for some time.

April 2021.

Yes we had a reprieve of sorts from lockdowns and covid restrictions. This meant visits to us and we went to a special birthday picnic.

I also rose very early on A.N.Z.A.C. Day 2021 to see the sun rise on 25 April. I spent time reflecting on those brave souls who came onto the beach at Turkey to be…mostly killed. Vale those men.

April 2022.

This is the learning to live with Covid part of life now, and we had 4th vaccinations last week and will have flu vaccinations at the end of this week.

A different usual Easter for us. No family visiting and we stayed home. Whilst we miss seeing the grandkids and parents, life has moved on in many ways and the oldest 3 are adults with their own lives, and the younger 5 grandkids are with other parents or away on hols. We went for a drive and walk at Norah Head Lighthouse on Good Friday. After a lot of rain in past weeks, it was so good outside.

I also drove to Dee Why to see my Dad before Easter. He no longer wants his photo taken. We had a good chat and afterwards I re-visited some places from my life living near Manly.

I had this reflection after my time spent walking around…and I am honouring it with this image: I feel like I am HOME here.

 

And I couldn’t let Easter approach without sharing some goodies of appreciation with our local family G.P. clinic. We are so grateful for their care.

And sadly, we heard that a NZ friend who had a serious head and neck cancer had died. I visited my favourite place of contemplation to honour him.

A.N.Z.A.C. Day 2022.

Today, 25.4.2022,  is this special day of commemoration and paying tribute to those who died for us to live this life now.

It is the day the post goes live, so I thought it appropriate to end this post…..here.

 

And this poem, a moving one for me and many. I am reminded always of where my late paternal grandfather helped the wounded in France. Only to return to Australia and in 1935 to succumb to early death after a workplace injury. I wrote the poem out for Dad on this painting of mine and he still has it on display.

I know some of my readers are into Spring right now as we are getting more deeply into Autumn….

What particular memories do you have for the month of April?

Denyse.

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Remembering & Moving On With Gratitude. 23/2022.

Remembering & Moving On With Gratitude. 23/2022.

It’s April 2022 and I am remembering, with some vivid emotions, how I was feeling in April 2017.

Back then, I had just had my upper bridge and teeth removed….and although neither my dentist nor I admitted it out loud, we both suspected I had cancer. Yes, this was found.

Image from late March 2017 into April:

However, to get to April 2017 I had been through a LOT of emotional stressors….

and pain.

For a feeling person like me, I am prone to re-living emotions that are negative. Sigh. Humans are like this.

And because a CANCER was growing in my mouth, and I had been through ENORMOUS life transitions it was:

S T R E S S F U L.

Yet, despite that I know I tried my best to continue my daily life, managed via a background internal noise…you have cancer, I.B.S. is awful, my family is away from us and I miss them, my husband is busy learning and helping others….and I am WORRIED.

Why Write This Post?

I had some stressors re-emerge this week.

Health related ones. By the way, I am OK….but still hard going for more tests/biopsies, follow ups….

I asked myself “what is going on?”  and then I realised:

A LOT has happened to me in the past 5 years…and it kind felt like a burned out system I was operating.

I asked myself a few questions, as I am always looking for a solution and here’s what I found:

  • Yes, on top of Cancer in 2017 and 4 surgeries…
  • Two major abdominal surgeries in 2020
  • Cataract surgeries too
  • Oh, and a colonoscopy and endoscopy (both OK)
  • and a MILLION (ok about 45) drives back and forth to Westmead for checks of my upper prosthesis
  • I am tired…and yet more health suff comes up, and I get weary and wary until….
  • I remember GRATITUDE & I:

OFFER myself kindness and self-compassion

ALLOW a few tears to fall

CHAT with my dear husband

CONTINUE my daily & nightly meditation practices

ENJOY a coffee & treat by myself

FIND some ART to do

ENJOY nature each time I can

AND allow time to pass.

Nature reminds us of this EVERY day & night

And I said this to myself:

“I am no longer 5 years ago Denyse. I have made so much progress in my emotional strength building and resilience from 2017, and even though I have small concerns and worries, I CAN manage these by acknowledging them…and using some of my skills from the “Denyse Emotional Health  Toolkit” *

Re-reading a post from Telling My Story, I found this. Always good to have a reminder.

This List Was Something I Kept for Me in 2016.

Here are 20 things you can control:

1. Talking to yourself positively

2. The way you talk to those around you

3. The amount of physical exercise you give your body

4. The food you nourish your body with

5. Your level of honesty

6. Whether you are a listener or a talker

7. How often you smile every day

8. The time you spend worrying about irrelevant things

9. The amount of love you give your children

10. Whether you see the glass half empty or half full

11. How mindful you want to be

12. How you make other people feel about themselves

13. Having a generous heart

14. Allowing yourself to ask for help

15. Offering help in return

16. Whether you judge people or accept people

17. Having an open heart to receive true love

18. Whether you believe in yourself

19. Your words

20. Your thoughts

 

And in the months ahead I am seeing my psychologist again for a chat about this and how, even though we think we are getting through a major life event, it is still, in its way unique to us: a trauma.

  • No such toolkit exists in reality but it sure helps me to know and recall the skills I have within my experience. 

I use an image to remind me of the confidence I have and can find when I may forget! This image is from last week’s visit to Newcastle.

Just after this post was published a favourite doctor and author of mine Dr Kathryn Mannix, (link to her facebook page is here  )wrote a post and it resonated with this that I have been outlining so much I commented.

Oh Kathryn…how do you “know” that this is exactly what I needed to read today. It’s occurred to me that having successfully come through from a nasty rare oral cancer dx in 2017 I have been, in many ways, traumatised by it, and that unless I “own” up to the feelings that were/are scary and continue to post “just the smiles” and good news, I am doing myself a disservice by not acknowledging its impact. I wrote a post on my blog just tonight about it. Your words, as always, resonate! Thank you.

Denyse that must have been such a tough ordeal, and a life- changing experience. It has shown you how fragile we are, yet it’s also shown you how resilient you are. Life afterwards is different: that ‘both-and’ thing of having been afraid, distressed and uncomfortable shows us so much about ourselves, both fragile and strong, both afraid and committed to persevering, both relieved and anxious about the future when treatment is over. Let’s be our whole selves. Because we’re pretty amazing, troubles and all!

Kathryn’s two books. I also listen to her books via Audible:

 

How is your resilience and courage?

Do you too practise gratitude regularly?

Denyse.

Joining in with Natalie for Weekend Coffee Share today

Thank you Natalie.

https://natalietheexplorer.home.blog/

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2 Years Of Change & Uncertainty In Covid 19 Times. Pt. 2/2. March 2021-2022. 18/2022.

2 Years Of Change & Uncertainty In Covid 19 Times. Pt. 2/2. March 2021-2022. 18/2022.

Recently we clicked over to the third year of having Covid 19 affect so much of our lives as we knew them…from any days, months and years before.

It was a gradual process in some ways and I wrote about some of it here.

Messy writing…from calendars: 2020. 2021 & 2022

However as time went on, and into 2021 we here, in our part of Australia, New South Wales, we lulled into a type of life that resembled one we remembered well.

March to June 2021.

I drove to Newcastle for the first “in-person” event in Covid safe conditions for the Newcastle Writers’ Festival and heard Julia Gillard interviewed by Rosemarie Milsom, who is one of the women of courage, here.

We had high hopes that the 2021 Festival would happen. Sadly, it did not but was an on-line one. All fingers crossed for 2022 as I already have my tickets to see and hear Jane Caro AM,a woman of courage who started my series, here,  Trent Dalton and Kate McClymont.

In our case we did this:

  • I visited my father in Sydney and left him set with more meals and treats.
  • We had school holiday visits (April 2021) from our son and his family.
  • School had been going pretty normally for many and there was a good atmosphere seeing children back at school.
  • Parents often chose to work from home and that did help when there may have been some reported cases of Covid in schools and in workplaces.
  • We had the daily updates from NSW Health and the Premier.
  • Many people did find these stressful. I learned to check the summary rather than watch.
  • We wore masks, we were careful about where we went, but we generally felt safe.

Our granddaughter celebrated her 9th Birthday in April 2021 with a family and friends picnic in a large regional park and it was clear how everyone relished being out again, and meeting with others as well as enjoying the outdoors.

A.N.Z.A.C. Day came, on a Sunday, and there were small and large ceremonies in N.S.W. I chose to go to Norah Head and watch the sun rise on this very big day.

I went to see my father again, and he was staying well. Life seemed good.

I had already returned to meetings of the head and neck cancer group on the Central Coast, and after the May meeting took the chance to walk around the Boardwalk at Terrigal.

 

 

Mid May 2021 I celebrated four years since my head and neck cancer diagnosis with a trip to Sydney to see Hamilton on a Sunday afternoon. I had not been back to the harbour area for some time and I enjoyed a joy-filled walk around Pyrmont before the 1 pm. show. The Lyric Theatre was well-organised for social distancing, we had to wear masks and obey the Covid Safety instructions.

I met up with friends when we could, as social distancing was fine in the shopping centres. It felt so good to do that again.

I also go to Sydney’s Westmead to have mouth check by my prosthodontist in May. So glad I could.

As part of my role as an Ambassador for Head and Neck Cancer Australia, I met with N.S.W. Senator, Deborah O’Neill in her Central Coast office and when we parted said we would see each other at the Parliamentary Breakfast, being hosted by Sen O’Neill and Dr Katie Allen, in Canberra in June 2021.

I made plans excitedly to meet up with blogging friends when I was to come to Canberra, and booked accommodation.

Sadly, over three separate periods, until the end of 2021, the Head and Neck Cancer Awareness Parliamentary Breakfast was postponed….and there is no plan for a 2022 one..because….well, there is likely to be an election soon….

I needed to continue some kind of regular daily routine and the blog helped greatly here.

I also decided to invite more women to share their Stories of Courage on the blog. I had a few women who kept promising me their stories, but the weight of covid restrictions on them in the latter part of the year saw them drop out. They were under a great deal of stress…just managing living alone and working too.

In this household we got excited in June.

We got our second Astra Zeneca vaccinations.

The latter part meant our second youngest granddaughter was turning 8 and we had fun ideas celebrating here with her dad and siblings and were ready. Until.

This.

Lockdown.

It was announced on the last weekend of June.

June – October 2021.

The Premier called on us all to manage with the strictest of conditions to date. It was OK for us, as we were already used to being at home as retirees.

It was not good for:

  • travelling
  • visiting
  • going to another person’s house
  • working other than at home, or in a health facility or a school/childcare where kids of essential workers could attend with minimal staff, and careful supervision.
  • having surgeries that were non-urgent
  • visiting ANYONE in a care or hospital-like place as well as hospitals
  • connecting
  • giving birth with a partner
  • getting married
  • having a funeral

so much just had to

S

T

O

P

and it felt the right thing to do at the time.

But it crippled so much business, and affected people’s health.

I can only write about our N.S.W. and Central Coast experience. 

Other places were either not affected (other than no-one could come and go) or had already been in lockdown before.

I found myself at a bit of a loose end on that first day. A Sunday. I went for a drive into Wyong, and walked about a bit taking some photos. I would not be back for months.

How We Managed This Lockdown.

  • Once my husband and I knew what we could and couldn’t do, we set ourselves up as only going out once a day in the car (and that was legal, once a day) and for essentials.
  • He could go to Bunnings but rarely did.
  •  He visited the chemist and did a weekly grocery shop at one Woolies only.
  • I went out once on a day he had not been anywhere and usually to a stand alone Coles, using the QR codes, wearing a mask and getting in and out fast.
  • I made a daily photo record. It helped give me something to do.
  • Blogging still happened but I needed more focus to get me out of boredom.
  • I could still visit some areas of nature within a certain boundary of home.
  • Later, I realised I could have gone further but I waited till September/October.

I was able to see my dentist, but not my prosthodontist at Westmead because they were deployed for other health services. My dentist did a great favour for me and my progress by taking photos inside my mouth and they were used by my head and neck cancer surgical team to determine how I was going via a telehealth call in September. We had in-person visits to GP and telehealth with some other doctors.

Honestly sometimes it is better not to know how long something will go for….

 

School kids did not see each other, except via zoom.

Families were separated for a long time.

Teachers and schools had to continue remote learning systems and programs for a VERY long time

Mental health professionals were concerned for many people in different settings and professions. Telehealth services for psychologists expanded.

No travel between state or territories unless for approved reasons. Many were not approved.

Very few could travel overseas, even for urgent and humanitarian reasons.

Our daughter turned 50 and she had a lockdown zoom birthday. She was given some special gifts including a cameo to her from Trent Dalton.

The lockdown went for 106 days.

In that time my hair grew more than I had ever known since I was about 20 years younger and I hated it…so occasionally B would cut some off. I returned the favour.

The Premier of N.S.W. resigned…and yeah, OK, we all said. Next?

Seriously, we (us) were over it and longed for more guidance and commonsense.

I’d like to say that happened but it didn’t.

We got our haircuts eventually. B before me as my hairdressers had to wait till the staff were fully vaccinated.

Our daughter and her youngest drove up to see us. Happy times! No photos. I look shocking…lol.

I got back to see Dad. He found it so lonely but remained well and was double vaxxed. Took him usual food packages. At least I could still cook and I did.

I was saddened to know a friend of mine died from an awful cancer. I attended his funeral via a link.

We got down to see our son and his crew and that was special too.

Mid- October – December 2021.

I also found that I was determined to get out and about once I could and that proved to be not as good for my emotional health as I may have thought.

We did do our morning tea thing on my 72nd Birthday and that was fun. Heard from our family and made feel very special on social media too.

THIS matters the most: Love.

It was in the period late November 2021 to February 2022 that I became aware of doing too much. And with Covid around, there was/is all the more to be concerned…is it Covid??

I had a virus of sorts..not covid and my health affected my confidence and my ability to meet others or travel to Sydney because I felt drained. I had covid tests. All OK. But in having to have covid tests (P.C.R. ones) and await results this took FAR too long for return of results. That is why we missed Christmas Day with all our family in Sydney….and then, as I felt worse again in January, my father’s turning 98. I did eventually get to see him. Our family all came here in January but Covid sure does make planning challenging impossible.

One friend, and her husband and kids drove to  Canberra from Sydney to see their family but on their way, got a covid positive notification and boom holiday cancelled, presents left with family, and a turn around back to Sydney. In the end, only that ONE family member got Covid.

New Year’s Day I drove to West Gosford – about 45 minutes from our place – to pick up a click and collect parcel and then to Coles to get bananas and see if the rarity (then) of RATs tests were on sale. They were. I grabbed a pack of 5 for $50. Used two of them on me during January and still had one PCR rest as well. Negative.

There are stories like my friend’s  in our family too. Some get Covid, others not. No rhyme nor reason. RAT is negative, PCR confirms, then later its positive.

January into February and March 2022. 

We had almost all of the family here late January for lunch and the most important getting our daughter’s and son’s signatures on our updated legal papers.

and 6 of the 8 grandkids came too…what fun!

By February 2022 the Australian Government and State Governments were able to get in sufficient Rapid Antigen Tests for pharmacists to stock them and eventually for those like us, on a pension, to receive them for free. There are far fewer line ups for PCR testing at local clinics but they are still operating at time of writing. We celebrated B’s birthday with morning tea out…and no photo but a week later, his older brother visited and that was very special. I made this collage…B is from a very large family, and these two are less than 2 years apart.

At present, we are still choosing to mask up at the shops and inside shopping centres. The doctors’ rooms insist on it. The QR checkins have gone. There is travel between states and territories and overseas too…not as much as before, but it is growing.

Then at the end of February into March 2022, the eastern states of Australia fell victim to an enormous rain event, leaving people homeless, and with no work prospects. Australia’s response to this “never before event” was not great. And those of us watching on felt helpless. We were not directly affected. However, it was unprecedented and many places had waters come in where they never had before. Once it was safe, I did venture locally.

Lakes Beach erosion

Wyong River at Milk Factory.

Keeping as healthy as I can.

I have already mentioned I was not 100% well for a few months and so did the right thing, for me, and have cut down rather than cut out what is important to me: connecting with others. The blog has been quite a lifeline to others, along with social media connections. I never felt too lonely when I could ‘chat’ or ‘comment’ to friends on-line. I have taken stock of my health, and still mid some check ups but going more slowly to help me first.

I admit that Covid 19 took its toll emotionally with its uncertainty, and constant change.

Along with the second year being so much more political it made me decide that arguing back on social media was hurting me, not anyone else.

What now?

I have no idea. Most of our family who are in daily contact with the wider world are fully vaccinated but have also had covid. Go figure.

I am doing my best to live as peaceful a life as I can, with my greatest responsibility to keeping well, mentally and physically.

My day consists of great interactions with my husband, a visit to a local area and/or shops. I start with meditation and gratitude practice and finish the day similarly. I am actually reading a book of fiction right now…The Mother by Jane Caro. It’s a thriller of sorts. I am making my way slowly through Brene Brown’s Atlas, and listening to a variety of books on audible, the one I am finding the most fascinating is The Body Keeps The Score.

Take care, friends and readers.

I hope this missive has not been too onerous to plough through.

I blog to connect…and also to keep the stories alive!

Thank you all,

Denyse

Joining in with Natalie for Weekend Coffee Share today

Thank you Natalie.

https://natalietheexplorer.home.blog/

 

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