Sunday 26th June 2022

Telling My Story. Chapter Twenty Five*. 2020. Pt.3/3. 103/2020.

Telling My Story. Chapter Twenty Five*. 2020. Pt.3/3. 103/2020.

Well over a hundred three years ago ….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 (her story is here) 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 Five*. Part Three of Three.

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.

To read the earlier two parts of this Chapter go here for Part One (January, February, March & April) and here for Part Two (May, June, July & August).

 

WHAT A YEAR! 

Let’s get on with the final part of Telling My Story….2020.

SEPTEMBER.

But first, here’s to the Dads in my life:

Father’s Day Collage

I did not expect to be continuing to be recovering from surgery but yes, that is so. I was treated at home for 3 weeks by a Wound Nurse who took care of checking the wound, changing the VAC machine that helped heal me and then, as I did so well, signed off so I could visit my GP’s Nurse three times a week. Gosh people. Life is good…hey!

I could not drive (again) because of the machine and its attachment to me, so my dear husband (yet again!) drove me to Chris O’Brien Lifehouse for my 6 month head and neck cancer check with my surgeon.

It was the first time my husband had been back with me here since early 2018. Certainly COVID had made some differences in protocol but not to the great ambience we both felt with my head and neck surgeon Jonathan and his surgical assistant, Cate.

Here’s the story of that visit!

It’s always good to see my team. I love them! And the best part of that visit was when Jonathan said “See you in a year!” WHAT? Blown away. I am doing well!!

Mind you they had some fun at my expense with the VAC system I was carrying! Thanks to social media Cate knew about my surgeries. I was advised that my CT scan of chest and neck was fine and to go see my prosthodontist when I could. I did.

 

With My Prosthodontist: I was back in a few days with mouth pain, but with some anti-biotic treatment it went away!

SPRING WEATHER & MEMORIES!

OCTOBER.
What a special month!

October is special because we have a grandson’s birthday and my husband and I celebrate the anniversary of our meeting each October. Just sneaking into October, I was able to say “bye bye” to all wound care. On 6th October I was F R E E. The body, the doctors and  nurses, the VAC system and I had healed me. Hallelujah!

We had a school holiday trip to our son’s place on the outskirts of Sydney to celebrate an early birthday with H and listen to the stories and share much with R, E and M. We loved it.

OUR HOLIDAY!

On 17th October 2020 we celebrated our fiftieth anniversary of meeting. Now, for the first time in over 5 years we planned a short trip to the north western city of Tamworth where we met. We set off on the Monday, venturing into the country roads we remembered so well and with shared driving the trip was most enjoyable.

The next day we went to the top of Oxley Lookout to take in the view of Tamworth and then drove the hour or so to my first school at Barraba. We had morning tea and did a small tour of the spots important to me. They were the house where I lived in 1970 and to the school where I taught.

The town itself was less active and we could understand that. Both of us were worn out too by some of the emotional memories that flooded back.

One was of where I gave birth to our daughter in 1971 and we realised that we had seen and done enough of the memory lane and came back to our most comfy house. Glad to have done this trip.

And back into our retired lives here on the Central Coast of NSW.

PHOTOS, FLOWERS, RIVER & MORE.

OCTOBER into NOVEMBER. 

My improved physical health, fewer restrictions in NSW thanks to good COVID numbers meant I could be out and about more and enjoying what IS retirement now, post my head and neck cancer surgeries and treatments. But first, Beyond Five changed their name to Head and Neck Cancer Australia. Congratulations to them and I remain a very committed volunteer Ambassador into 2021.

 

I was also delighted to have these kind words written about me by Nadia Rosin CEO of Head and Neck Cancer Australia on the occasion of my great outcome at my September visit to my surgeon, Professor Jonathan Clark AM who is the Chair of Head and Neck Cancer Australia.

SNIPPETS & MEMORIES

Time To Renew My Photo Collage for the Blog and On Facebook.

NOVEMBER

  • I remembered my parents’ wedding anniversary: they last celebrated together in 2006 for their Diamond (60th) Wedding Anniversary
  • It got me thinking about “our” up coming Golden (50th) Wedding Anniversary in January 2021.
  • So, then my thinking got me…interested in lots of Etsy, convincing my husband to go along with my plans (he said yes!) and then lots of in-person visits to so-called cheap shops – buying up golden type decorations as there was a bit about for Christmas…
  • And finding places on Etsy which made amazing posters. I am going to save sharing these till the actual anniversary but let me tell you, there are clever people out there and how well they can make items for display for a special occasion
  • My husband and I had fun too ‘getting the info’ we wanted to share: how many places we had lived in, how many cars…and the like.
  • I also started getting more memories out that could prove useful for my version of the day when we celebrate.
  • We settled on a family lunch here because the actual date IS  Saturday 23rd January and we will welcome our two adult kids, their kids and one partner of a grandchild. We will be a lunch party of 13. Our daughter is making the cake (to her dad’s likes) and we will put on a pretty easy cold lunch.
  • Dad lent me the Golden Wedding Anniversary Scrapbook I made for him and Mum for 1996 to read over too. And the 60th one as well.
  • After seeing Dad one time this month, I visited Uberkate Jewels and left my precious Ubercircles chain to have a very small circle added. I have it now and it is very special.
  • Our 2 eldest granddaughters visited for a photo shoot of us for our 50th. What fun we had.
  • I recalled the lovely day a year ago when I met my blogging friends to celebrate my 70th.
  • On my birthday this year, my husband drove us both to see my Dad as he had not done so for a while, and we had a lovely morning tea for me. I brought it but that is fine!

The two of us.

Sometimes something surprising happens when you look outside. This was that! From our glass kitchen splashback one morning.

 

DECEMBER

Could we believe that we might be able to celebrate Christmas “with” COVID still hanging around? Yes, we could.#perhaps not. See below.

Along with:

  • remembering social distancing: 1.5 metres between people
  • limits of numbers at gatherings (mind you, this keeps shifting like the proverbial goal posts!)
  • use of masks where social distancing cannot be practised…except basically no-one but a handful at my local shops are doing this..and that includes me.

However….that said, Australia is grateful to be an island surrounded by sea as is our next-door neighbour New Zealand as it’s because of that, and the closing of our respective countries’ borders early that we have done reasonably well. But even that sounds crass and not empathetic and many people lost their lives in COVID times, with the state of Victoria having the most. I truly send my condolences to all here and around the world where you have been personally affected.

At the time of writing, the first vaccines are being administered in the hardest hit country (to date, my thinking) U.S.A.

It is also the place where the current President whose names rhymes with rump will not accept he lost the November 2020 election to Joe Biden. Mr Biden will be sworn in on 20 January 2021.

FAMILY. 

When I was at Dad’s place on 30 November, I did a walk around the walls where he has many of the family photos and some of them are large collages made by me for him to have memories on his walls. It was interesting for me to re-visit them to regain a renewed sense of gratitude for my life, the lives of those who went before me and to my parents. In fact my very first post for Telling My Story is this one: About Mum (Noreen) and Dad (Andrew).

L:Mum’s parents. Dad & Mum. 1946. R: Dad’s parents.

CHRISTMAS MEMORIES & MORE.

As I write it is mid December with just under 10 days till Christmas Day. This year we are driving to Sydney to enjoy Christmas lunch with our daughter and son and some of our grandchildren. Back in our days living closer we often entertained on Christmas Day and I was pleased to do so. Before I took over the reins for our side of the family Mum and Dad hosted. This is how it works for us. Not doing too much (although I used to..of course) and it really IS about getting together.

UPDATE: Covid…..

If anything was going to change our year, it was “this” quiet and unseen danger.

 

The trouble with COVID19 is that it is:

#invisible

#most places

#highly contagious

#can be asymptomatic

In the time I want to  publish this on Wednesday 23 December, 2020, it could be that life with COVID in Australia, particularly NSW where I live, could have changed what our plans might be…again.

I also got to see some of the family who live in Sydney when I visited my prosthodontist for a sore mouth check on 22 December. My mouth’s skin is sometimes irritated by a tooth of the prosthesis but I can see why more and know, as he said my management inside my mouth is great. Phew.

What I will do, however is UPDATE this post over the days till the end of 2020 if needed.

I do wish you all the very best time ahead. It IS meant to be fun, festive and family and friends time and I hope that works out for you too.

And be kind…..to yourselves first.

Denyse.

To my twitter friends: this was lovely to make. The first circle apparently people I tweet with most and so on to the outer circle. I love my twitter friends.

 

 

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Telling My Story. Chapter Twenty Five*. 2020. Pt.2/3. 51/51. #LifeThisWeek.102/2020.

Telling My Story. Chapter Twenty Five*. 2020. Pt.2/3. 51/51. #LifeThisWeek.102/2020.

Well over a hundred three years ago ….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 (her story is here) 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 Five*. Part Two of Three.

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.

 

*Rightio…how DID I jump from my last chapter..Telling My Story which was Chapter Twenty to here?

No, I did not secretly write the posts and then not publish them.

But I did have a brainwave…do 2020’s chapter while it is fresh in my mind.

So, here I am with the second four months of “THAT” year we won’t forget in a hurry: 2020. Last Wednesday I published the first four months here.

This is the last post of #LifeThisWeek I will publish the final one of Telling My Story 2020 on Wednesday 23rd December.

Then, over time in the first months of 2021 I will write:

Chapter Twenty One (2015),

Chapter Twenty Two (2016- mid May 2017),

Chapter Twenty Three (later in May 2017 – 2018),

Chapter Twenty Four (2019)

In this, the last post for Life This Week, I want to thank each of you who has linked up, read and commented this year. You are very much valued as a part of this community. I am posting again this Wednesday to conclude this series (the Chapter for 2020 I mean!) and will be back on board for:

MONDAY 4 January 2021. 1/51 Word of The Year. Optional Prompt.

 

Part Two of Three. Chapter 25. 2020.

Now, on with the months of May, June, July and August of 2020.

I have to warn you whilst there are no gory photos there may be some details of the ailments I had that are not pleasant to read. Nor, of course, were they pleasant to have!

MAY 2020.

Family.

Our second granddaughter turned 21 in the early days of May. On the same weekend when the Premier of NSW announced, during a COVID update,  that families could visit each other in their houses, S had her ‘lockdown ISO’ party which she shared with us,  around 2 hours away, via facetime. Her Mum, boyfriend and siblings made it a special night and I am told, she got the cake cooked by her mum as was requested! Congratulations, S!

We actually saw her and the family the very next weekend as it was Mother’s Day and my daughter invited us to her house for Morning Tea. That was the first time we had ventured to Sydney since March. It felt strange being on the M1 and it was not too crowded. Delighted of course to see our family. It was lovely.

On the Tuesday afterwards I drove back down again, in a different direction, to see my Dad on the northern beaches. I had not seen him for at least 3 months as we were being very cautious in making contact with such an older person in an independent retirement place. I took all precautions and they had strict protocols for me and paperwork. I admit, I did give Dad a few hugs. He had missed human  contact other than generally on the phone.

 

My Self Care In May.

My emotional health took a bit of a battering as COVID struck with all its limitations, rules, changes and moving of goal posts. I am not great with change but do accept it’s needed and so I offer myself more kindness, easier inner talk and times out (if possible) by myself in the car and to possibly enjoy a coffee. I was delighted to find a takeaway stall on one of my Sunday drives, and then over time, with limitations some of my fave coffee places which had stayed open, could have a small number of people sit for coffee.

I kept up my art and craft practices and set myself small goals and got immersed in fulfilling those. With the Index Card a Day Challenge starting in June I was ready for that. I did some treat cooking for me and for my local GP practice as the doctors and front office staff went through a LOT in terms of dealing with the regulations and patients!

I continued with drives over to the water once COVID regulations about exercise meant you could walk where you went. I did. Sort of. To take photos. Noticing things in nature always helps me and I really needed it because I had health matters to deal with that were significant.

I also acknowledged that it was 3 years on 17 May 2020 since my oral cancer diagnosis. Important to remember, reflect and be grateful.

Health Matters. May, June, July and August.

I will do my best to use short and helpful sentences..and as my husband suggested: dot points.

MAY:

  • I needed to finally, and actually rather urgently see my female G.P. about the bothersome rectal issues. When I saw her, it was “do this, go here, see him” and “YOU have your whole life ahead of you” Get this sorted. She “IS” that kind of doctor and I love her for it but that day I got a bit scared.
  • She sent me to the Colo Rectal Surgeon and to my embarrassment (not his) I was very reluctant to go through with what he suggested first. A colonoscopy. Why? Rectal bleeding and obvious (he saw, not me, I just knew) rectal prolapse.
  • THIS was a condition I had lived with, tried to anyway for well over 2+ years, and I KNEW it was not good. I blamed IBS for my sometimes incontinence and ageing..but as I have found out no, it was the rectum being very lax and ‘falling out’. Sorry to write that.
  • Off home with the news, and the Colonoscopy pack. It was mid COVID restrictions at private hospitals and I opted for mine at the place 5 minutes up the road. No can do. Till June.
  • Waaahh. That is me who does not like to wait.

JUNE:

  • OK, people, with me it was nerves and more that put me off the colonoscopy but I also knew that without doing that nothing would change.
  • Facing up to it, hating the preparation and the aftermath at home, my dear husband took me to the private hospital up the road and left me.
  • The nurses were kind, the prep sure had done its work and….
  • The outcome, as told to me by the surgeon, was no cancer..but a pretty awful rectal prolapse which he strongly suggested needed repair and to come see him very soon.
  • We did, it was very helpful to have my husband there. The surgeon explained how he would perform an abdominal rectopexi. He would go in via my very old hysterectomy scar, pull up the rectum and sew it onto bone low on my spine near the coccyx.
  • Recovery would be in hospital for at least 4 nights and he predicted success. I was ready to trust him.

JULY:

This post tells something of what was to come for me.

  • Testing, testing. Bloods needing for the major abdominal surgery coming up.
  • Then to the private hospital in COVID times for booking in. In actual fact, it was a phone pre-op consultation but I needed to attend the hospital some 45 minutes away for ECG and pick up pre-operation info and prep. No not the awful prep. Phew.
  • I admit the nerves did play up a bit but I have dealt with 4 cancer surgeries AND I trusted this doctor and his goal for me and my GP too.
  • On a freezing late July morning my husband drove me – bag packed with nighties, all I needed for entertainment i.e. phone & ipad, and loose pants – because coming home my abdomen would be swollen & tender.
  • I was literally dropped off because of COVID.
  • Interestingly the prep I had to take at home before surgery was a drink of electrolytes and I had to have an all over shower body wash with their particular sterilising skin liquid.
  • The worst part for me …is always the waiting before going into theatre but this time was made worse as my surgeon insisted on a series of enemas. OMG. Not happy, in fact I got teary with the kindly nurse. She understood but the back and forth in a gown to the loo…made little better by being on a bed close to it. Sigh.
  • Anaesthetist was very thorough with his questions and also had to give me a spinal. Not impressed by the anaesthetic nurse who was very stressed about my veins. Shout out to him: not good to show frustration in front of patient who is already nervous.
  • Then I was GONE. Out like the proverbial.
  • Recovery: very aware of the pressure boots keeping my legs active, the fact that I could not feel from my waist down, catheter in and to be honest, felt well because “it’s over”.
  • Hiccup in communication between staff in recovery – it was busy – COVID restrictions were easing for capacity – meant I stayed in recovery about 2 hours longer than needed…grrr. Could have been in my room.
  • Something unexpected as my surgeon told me the morning after: he did the horizontal cut as planned but when opening me up, there was a hernia which would need repairing. It required a vertical cut to access it, from the first cut to my bellybutton. All stitching was internal with tape holding the outside wounds. I literally had an upside down T wound area.
  • Fast forwarding: I had an OK time recovering but not comfortable at all. My eating was hampered by my mouth and whilst I could have anything to eat, I was worried about …diarrheoa. Trust me, it didn’t happen but I needed reassurance and my surgeon was prepared to let me go home a day early even before bowel movement because I was needing home. He was lovely. Still is!
  • Saw him at a check up about a week or so later and he told me I was a star patient. Oh, I needed to hear that.
  • No driving, but that was OK. I was just so relieved that all was well  and miracle of miracles, no incontinence. Yay. Unreal.

AUGUST:

  • But. It was not to continue as a star recovery.
  • Around 2 to 3 weeks post-recovery, and I was still not able to drive, there was some redness appearing on the surface near my bellybutton. Husband took me to GP who advised ‘could be a ‘haematoma’ …we’ll keep an eye on it. I did, with photos. BUT….the area of the upside down T was needing greater cleaning by me. At shower time. Sigh. OK.
  • Whilst I am not great with complications, I also understand they occur. Even with ‘me’ doing everything right. I wrote here about what happened.
  • Then I wrote in detail here of the timeline, the circumstances and why it took me till October 2020 to be fully recovered!

 

What a Four Months That Was! 

But wait, there is MORE.

Daily Life with COVID19.

No, we did not have it..phew and all that. But we had to, like everyone, live around its restrictions and rules, and to be safe. For us, who are pretty conservative and intelligent people in their every day lives, it was fine. Really. You see, due to our health matters and not much income, it was never on our agenda to have overseas holidays, or even interstate ones so, unlike many, being home-bound in some ways did not bother us.

I made it work for me, the person who enjoyed her daily outings, by varying what I did at home and combined with my cooking/baking mojo returning, I found I could enjoy a coffee and treat at home some days. I also re-discovered reading the women’s mags. I did! Some got ditched soon after buying, but I have been reasonably surprised by the quality reading in the Australian Women’s Weekly so I buy that now. We gave up our physical paper delivery ages ago and get the Sydney Morning Herald as a digital subscription. All the local newspapers, which I used to love, are gone to digital land…except for one free community paper each week. I still enjoy something physical to read.

I continue my audible subscription each month and listen to some books in the car, and others at night in bed. I have taken to reading along in some cases with the physical book when accents become too hard for me to fathom which character is who!

My art is always here for me. I have, as many know, a dedicated area near my computer for all things creative. Making designs and mindful mandalas is the g0-to for me when I need to ‘concentrate’ or be mindful on just one thing!

Cooking now has a rhythm for a meals each week and we tend to use our batch-cooked meals a couple of times a week, and eat meals made from scratch on others. My dad is the recipient of some of the frozen home cooked meals.

Head and Neck Cancer Awareness and Support.

In the weirdest year ever…. COVID …to date…all things meeting-wise and catch ups were off the table. Therefore the organisation for which I volunteer had to re-think what it did to get messages and support out there for patients, families, carers and professionals.

The June Patient forum at which I was to speak was cancelled and morphed into an on-line program over many days and weeks. My part, on line as recorded by me here, was to respond to my psychological reactions to and management of having head and neck cancer.

The usual fundraising event for Beyond Five was Soup for the Soul and the physical events were not happening, nor were there any of our local Central Coast meet ups. Nevertheless, we worked on getting messages out there via You Tube, and of course, Zoom Meetings. I was not great at zoom so not that involved but as mentioned last time, my interview was on line about nutrition.

More from COVID Year 2020 for Me To Remember!

Apart from hospital homecomings… THIS was a big day and much needed..our son and his four kids came for lunch. Ahhh that’s better!

Grateful for Family Visits.

Thank you for reading..if you got this far. I am incredibly grateful to my readers and commenters.

Denyse.

Link Up 220

Life This Week. Link Up #220

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.

* Feel free to go with the prompt for the week to add your ‘take’ on the prompt. Or not.

* Please do stay to comment on my post as I always reply and it’s a bloggy 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.

* THANK you for linking up today! Have a great break from now till the New Year. May You Be Well! 
The next link up will be Monday 4th January 2021. Optional Prompt: Word of The Year.

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Telling My Story. Chapter Twenty Five*. 2020. Pt.1/3. 101/2020.

Telling My Story. Chapter Twenty Five*. 2020. Pt. 1/3. 101/2020.

Well over a hundred three years ago ….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 (her story is here) 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 Five*. Part One of Three.

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.

My 7th image for Telling My Story.

 

*Rightio…how DID I jump from my last chapter..Telling My Story which was Chapter Twenty to here?

No, I did not secretly write the posts and then not publish them.

But I did have a brainwave…do 2020’s chapter while it is fresh in my mind.

So, here I am with the first four months of “THAT” year we won’t forget in a hurry: 2020.

Posts to date are here.

Next Monday for the last post of #LifeThisWeek I will publish the next part & then probably the final one on Wednesday 23rd December.

Then, over time in the first months of 2021 I will write:

Chapter Twenty One (2015),

Chapter Twenty Two (2016- mid May 2017),

Chapter Twenty Three (later in May 2017 – 2018),

Chapter Twenty Four (2019)

JANUARY 2020.

On the gratitude path. I chose ‘gratitude’ as my word of the year. I love the idea and have a small bracelet I wear, glancing at it most days where is said ‘gratitude’ on one side, and ‘for life’ on another. I do follow through with what I say and writing this now in mid December I can tell you some days it was harder to find and feel gratitude but I managed it.

The Weather.

From October 2019 most of Australia was already in Bushfire Season. So much of the Eastern side, where we live, was as they say, tinder-dry and ready to start a bush fire. Over the time from then well into January 2020, we (Australians) lived with the actual or almost threat of fire taking property nearby or being affected in some ways. The temperatures outside were high. It was very unpleasant to go outside due to smoke which had arrived thanks to the winds also bringing black, fire-damaged leaves.

We did not see clear skies for many weeks. Fortunately, the amazing work of rural fire services, and of those who live in the communities affected went OK for those of us locally. Other places, including rural & coastal South Coast NSW and parts of Victoria did not with massive evacuations of crowds of holiday makers needing to get safely out of there. Some went literally into the water, others stayed to fight fires and some, in long carparks on single lane highways made their way home. It was awful.

Late January. No blue skies to be seen.

Family.

We have 3 January birthdays in the family. All male from my father who turned 96 on the 11th to our son and his nephew our grandson on the same days later in the month. We did not catch up to celebrate but as is usual sent greetings. I know I would have visited Dad sometime that month for sure. We had a grandson start high school, and other grandchildren go back to school or work as applicable.

Dad is 96. OLD…he agrees

Health.

It was time for my annual eye examination and that occurred pretty early at the local OPSM where the ‘on the ball’ optometrist picked up changes that were likely cataract-based and that his recommendation was to see my opthalmologist I see annually as well. This visit to Castle Hill, where we used to see her, also took me in Castle Towers shops some 5 years after my last visit, and like any stranger in town, I was gobsmacked at the changes, many made because of the light rail. Met my daughter and two granddaughters for lunch before the opthalmologist.

Well. That was a bit of news. Yes, I needed the surgery for cataract removal. Both eyes. Yes my husband was right, health stuff happens more after turning 70…And, yes, she would kindly bulk bill us but we would need to come to Parramatta Day Surgery. Check. Booked. Early March 2020.

Finances.

Without going into details, finances are always tricky in January for us and it is not related to spending from Christmas nor birthdays…it’s CARS! When we sold the house in Sydney in January 2015, we immediately bought new vehicles…the other ones were literally falling apart…and so, that means now annually the cost of CTP insurances x 2. Still, we are safe in our two vehicles and we are both independent having two.

Love my Nissan XTrail

And as always when January draws to a close this happens:

1. We celebrate our Wedding Anniversary. 49 years in 2020.
2. Australia Day happens.
3. Teachers and Kids in the family return to school & one grandson started high school.

The end of January is ALWAYS like this and I often feel it should be me too! Old habits and all that.

FEBRUARY 2020. 

This of course, made 2020 different!

After the awfulness of the fires and the altered ways in which families were forced to find housing, let alone anything they owned, there was on the news something about a virus from China called then CoronaVirus. There were half-hearted jokes relating the beer brand and to be honest, not much attention was paid other than..”oh, that seems pretty awful”…and “hope it stays away from us”. Of course, we hoped that.

The Weather Changed.

After the drought…comes the flooding. Of course. Massive rain fronts and more saved some of the land and its inhabitants from the awful threat of the fires. Still, it did not help the many, many animal casualties and deaths. So much was lost. There is a lot of bush regeneration happening. And we saw blue skies again, eventually, after the rain.

Birthdays.

A most important person has his birthday this month and he is my husband. He does not go all out to celebrate so I do that for us both! He did not do anything at all for his 70th last year so this year, we had a small family get together and his wish for a chiming clock came true.

 

Head and Neck Cancer Support Group Meeting.

2020 is my third year of being part of this group of head and neck cancer patients, their carers and sometime guest speakers. I attend in a dual capacity. I am a patient and the Ambassador for Beyond Five. More about ‘that role’ further on in my memoir.

It’s always good to gather with this crew. We are located here on the Central Coast and our commonality is having a head and neck cancer or being a carer/family member. It’s an open type of meeting and all sure are welcome. We usually share our stories and health updates and at times we have a guest speaker as we did at the first meeting for year in February.

Self-Care Rules. 

My routine for self-care has been mentioned in my regular posts via the Life This Week link up, and I note here what continued into 2020.

Most days I dress with purpose and go somewhere for a coffee. I do this too after I have been to the meetings in Erina, often taking time to drive around the Terrigal area as we now live much further up the coast. I was glad I did this on that February afternoon, and stopped for a coffee and cake at Long Jetty because none of us knew what was coming.

Getting Confident Again.

The persona that was Denyse some years back…way back into say the early 2000s to around 2013…loved to get out and about. To go to the theatre, the movies, meet up with friends. Have lunch, have a coffee. Getting together with friends and family was really important to me. BUT, over time, in this memoir of mine you will see the start of how my mood and other issues affected me. It started here. There will be more to come about the not-great-years-for-me of 2015, into 2016 and the early parts of 2017 in 2021. However, this is me recounting 2020 and I became more inclined to say YES to ideas like this…instead of usually NO, thank you.

Tickets to a Show and Driving to Newcastle and Back – Evening Time.

I have found that with my declining confidence what I needed to do was to challenge myself. In fact, that IS the essence of the theory called Exposure Therapy which I reluctantly took on board in 2016. More about that in posts here and here. Yes, some of it was related to potential IBS and some to ‘I cannot eat outside the home’ because of my mouth’s limitations but more than anything I HAD to give things a go.

I did.

I drove to Newcastle, about 45 minutes away, late afternoon in February, found a secure park in the street near the Civic Theatre (I already knew the place from 2019 attendance at Newcastle Writers Festival) and wandered over, then inside to be part of the audience for Chat 10 Looks 3 with Annabel Crabb and Leigh Sales. It was great. I talked to people next to me. I found the car safely in the night time streets, and drove home the coast road way in the rain. So pleased with myself too!

 

Head & Neck Cancer News.

I had an excellent visit to my prosthodontist in February and he declared all was well with my upper prosthesis and that was it. See you in May he said. Sure thing said I. Neither of us know of course..what was to come! OK..we know it was COVID but let’s  not get ahead of ourselves.

Ambassador Role.

As a patient of Chris O’Brien Lifehouse and of Professor Jonathan Clark AM, Head and Neck Surgeon, it is always a privilege to ‘give back’ in a way to help others. I was invited to be part of a new video series that would be made at “my hospital” as I call it, and I would be interviewed about nutrition following head and neck cancer diagnosis and surgeries. I was initially reluctant but when encouraged by the CEO of then Beyond Five, I said yes. It meant a day at Chris O’Brien, and lots of waiting around for film segments to be completed. However, I got to meet some special people, including two other head and neck patients, and dietitians too. My interview went well after an initial  false start. It can now be found here.

MARCH. 2020. A huge month!

The very next week I was back at Chris O’Brien Lifehouse for my then 6 month check up with my surgeon. I took the chance to do quite a tour of the place as I was not in a rush. In fact, it was the first time, in a formal setting, I saw pamphlets about COVID 19 and restrictions of entry into the hospital and of course, that made sense. Those signs had not been there the WEEK before. Things were moving faster. There were sanitisers at the door as well.

My visit was awesome. See you in 6 months! I got to say good bye to Deb who was leaving the art program I had supported, and I drove home. I did not know I would be back in 6 months but under far stricter protocols….that needs to wait till part 3/3.!

Remember the Confidence Growth?

I was invited to be the guest speaker at a fund raiser for head and neck cancer, hosted by young doctors in training on the Central Coast. One doctor, Caity, knew of me from my Beyond Five story and she too had a story there. Her father, only in his 40s, had died from a head and neck cancer. Knowing the importance of awareness raising and the importance of sharing the messages via the Beyond Five site, there was an evening function – a charity ball they called it- on a delightful, balmy evening at Avoca Beach. I was happy to share my story and to help share my information at my little table where I was talking to various attendees about head and neck cancer.

Little did any of us know, on this first weekend in March, that this would be the end of events such as these, thanks no thanks COVID. Feel really fortunate this went ahead and they raised some thousands of dollars. I remain in touch with Caity and colleagues too.

It was a big boost for my confidence. I used to speak off the cuff as a principal many times, and once I had that mic in my hand it was fine. I did have to find something suitable to wear and I did…and to drive myself from one end of the coast to the other. I did.

Eating remains an issue. But I am OK with that.

What I couldn’t do…was actually eat anything there. I did not pay to attend. I could drink water and that was it. You see, despite my normal appearance eating anything other than some cake with coffee, eating anywhere other than home is problematic.

And Now…Cataract Surgeries. Yes, x two in 3 days!

As a couple we had a rhythm for driving together to Sydney for my cancer treatments initially and then I became Ms Independent and as kids say “I can do it myself.” But not for this.

Monday 9 March 2020.

My dear husband drove us to Parramatta for my midday arrival at the Day Surgery. We were booked to stay just down the road at a new to us Meriton apartment. Fortunately he could access the room, and bring up our food supplies and clothes. Meanwhile I had a LONG wait as many people were there for similar types of eye surgeries. On this day it was my right eye. There were some COVID type precautions including questions about where I had been. No restrictions on other people being with waiting patients.

It is a LONG wait with weird stuff in your eyes but eventually I was ushered in to the next room, given a shower cap, no change of clothes, and onto a trolley. Saw the anaesthetist and his nurse. All checked out OK. His wife is my opthalmologist. I don’t know what he gave me but I have no memory of seeing her or the surgery but waking up, cover over my eye and for some reason I took a lot of selfies. Husband collected me, back into the apartment. Rested up and finally ate something and slept until the next morning when we needed to go back to the Day Surgery for check and drops. Then off home! Yay. Thank goodness for sunglasses (as recommended) because EVERYTHING was bright.

Wednesday 11 March 2020.

Despite having a successful outcome on Monday, for this day trip I was anxious. Maybe my mind is remembering what surgeries are about. Nevertheless with a confidence boost chat to my GP and a wee bit of valium on board, we went. This time the only place my husband could ‘hang out’ was at Westfield Parramatta as I was going home the same day. On arrival, only 2 days post the first surgery, the protocol was already ramped up thanks to COVID. More questions on arrival and a temperature check. Settled down to wait “after the drops in the eyes” and then BOOM..OK, what is that? Oh. A Fire Alarm and no it’s not a practice. Evacuate the building.

Down some 3 flights of stairs, in single file, I admit I started to remember what 9/11 people had done only SO much worse. Outside on the street, we were guided away from the building and waited. The firies came. In an engine and we waited. I was pre-op and whilst the anaesthetists was already there, his wife, my surgeon, arrived just as we were all coming onto the driveway near the Ferry Terminal. So, all we could do was wait. Eventually, thanks to my phone I texted my husband from a concrete set of steps where I sat and we waited. Probably about 45 minutes. Then, all clear. A faulty something or other and we traipsed up the stairs again. Lift was out for a time. The wait was not too bad and I was called in, and this time, saw my surgeon and even “saw some of the coloured lights” as she was inserting the lens. Wow I said. She said “no talking”. So I didn’t. No silly selfies, husband got me and off back up the M1 we went. The next day checks were at rooms closer to our house.

Updates on my eyes. As of December 2020. I see very well for distance and no longer need glasses for driving. Yay. I use a much weaker script in glasses for reading. At the shops I use a $2 plastic pair with 2 vision. I have had a recent check and despite some issues that annoyed me as I already have itchy eyes at times my opthalmologist says all is looking good and these should last me 10 to 15 years. Grateful too that she bulkbilled for these surgeries.

COVID19  GETS SERIOUS. 

On the weekend after my two surgeries above, there were a number of changes to how we here in Australia, and in our state, would now lead our lives. The Prime Minister, used Sunday 15th March to announce a raft of new rules on how we would live and interact day to day and why. He was often flanked with the then Federal Health Person,  and in our state, Premier with her Health head honco, Minister for Health and Police.

It began very seriously from Monday 16 March.

I am using some calendar reminders here!

  • I know that I needed to have both food supplies in for us and I admit it, toilet paper was a high priority.
  • I think I went, as carefully as I could, probably wearing a mask and gloves – whatever we had here at the time – to local supermarkets
  • I could not always get what I sought nor what we wanted
  • I remember feelings of insecurity in me that I may not be able to cook all the meals – for us and the freezer – to have on hand.
  • I know I felt the weight of responsibility

Meanwhile my husband was negotiating seeing his GP and going through medication changes and it was not easy. In fact, it was tough. Even though he could talk to the GP on the phone, some things are far better managed in person.

Our eldest granddaughter has come to stay indefinitely with her other grandparents who also live on the Coast as she has an autoimmune condition so did not want to be at her Mum’s. Mum is a teacher and going to school at that point each day was a risk that she, and her youngest had to take. It got a bit worrying. She popped up to see us…and for a much needed hug…just because she needed to as did we to see her.

Of course, we know now that schools did an amazing job of being flexible and eventually on-line learning worked..hard as it was…and teachers need congratulating along with their leaders.

So we did OK really I guess. I found it hard initially that my practice of going out each day for a coffee was curtailed but I found alternative solutions at home with a strong coffee and my ISObaking  took off!!

Dear Miss Five. 

Our youngest granddaughter, born five years ago at almost the end of March spent her fifth birthday….having her broken arm re-set. It was one of those small accidents but when it’s a little person it is always hard. Staying with her Dad, along with her siblings, when it happened, she was driven to the local public hospital where, as our son said, they could not have been kinder. Her Mum met up with them there. They stabilised her arm, she came back to her Dad’s to open the presents from us and share a facetime even though it was pretty hard…and then next morning, her actual birthday, she went back in to find the nurses had remembered her birthday and she was treated very well indeed. She was fine, and is fine. And as her Dad told her, you just wanted to be the same as me when I was four. True!

April 2020.

We became accustomed to daily updates on COVID numbers of cases in our state and country. NSW was not doing well. Sadly it was where older people lived such as in Nursing Homes that things went downhill rapidly. Each day seemed to bring worse news and added restrictions. Already we knew there would be no Royal Easter Show. Definitely no-one going anywhere on the roads except for essential reasons: work, medical or supermarket.

I find change hard but did my best with this one because we had to do the right thing. Even going for a casual drive to nowhere..or the beach was BANNED and police could pull you up to ask where you were going.

I did immerse myself in busy stuff for my mind, like blogging, art, craft and cooking. I had my cooking/baking mojo back. In general too I was able to source ingredients and do my best to cook for us to have a meal stash in the freezer. Toilet paper was OK. We celebrated Miss 8’s birthday via facetime. I was able to attend some ancillary medical appointments in person. That was a relief…my feet needed it.

Eventually too, my hairdresser was back in a very limited way when they got the OK to do so and my usual 4 weekly hair cut had blown out to 8 weeks but I lasted and I was very relieved to have my back to normal look.

And then on a Friday at the end of the month…oh, there were no ANZAC days services or ceremonies anywhere either…I got slight sore throat and a mild temperature so rang the COVID hotline and my GP and both said, report to local COVID test centre. It was in local hospital grounds 5 minutes away. Not much of a wait. Test was OK. Mask on from the get go….and back home to self isolate. I got my test Friday afternoon and result in wee hours of Sunday morning.

COVID COLLAGE.

And that is that.

2020. Part One of Three.

Denyse.

Did you read it all? Wow. Thank you.

Joining here with Leanne and friends for what I guess will be the last Lovin Life Linky in 2020.

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21/51.#LifeThisWeek. Telling My Story. Chapter Fifteen. 2003. 42/2020.

21/51.#LifeThisWeek. Telling My Story. Chapter Fifteen. 2003. 42/2020.

 

Background…from Telling My Story: Chapter Fourteen published in February 2020.

The story behind Telling My Story is this: I began in May 2017 and then was diagnosed with cancer. I had a lengthy break and returned to the plan to keep on documenting my life, one blog post at a time. Here is the link to the page where they all are now. I also shared this as My Woman of Courage story here.

Where was I?

OK. I know. I was a K-6  school principal.

It was in September 2002 when I could not return to my school.

I was sad, ashamed and very tired as there were different outcomes for me personally and us financially.

But I also had some good things happening in my personal life. I will get to them too.

Life is LIKE that!

Cancer. Leaving My Role as a Principal.

Doctors, Psychologists, WorkCover, Staff Welfare, Dept of Education, Psychiatrists…..

When the school principal is told by her G.P. “you are not to return to that school, nor to be in that role again”, it felt both comforting and helpful.

I had been a patient of my G.P. for decades and she had been doctor to our growing family including my husband and me so knew what else had probably impacted my life as well as school and its responsibilities.

But even before that…the night before, I was left to try to tell my acting boss – who was known then as a District Superintendent, that I would not be going into school the next day…and for sometime after that but he did not understand.

Eventually I must have made inroads into his understanding, after seeing my G.P. who immediately saw this as a work overload matter making me both depressed and anxious. The employer had not taken steps to see me better supported in my school. I told that story in the last chapter.

 

Days into Weeks into Months.

What started as ‘sick leave’ did become workers compensation leave over the next month as I took myself to appointments and interviews.

I had to share my story (see the recent two chapters here & here) and my employer’s representative agreed that yes, there was a case for me to be compensated under Work Cover. In other words, I was paid via that scheme and did not lose sick leave.

But….

I could not and would not attend a school.

It was suggested at meetings that I could transition back to schools but did nothing to improve my mental wellbeing. In fact they made me even more anxious. Then I was offered, later in the year, the chance to ‘work in district office.’ Noooo. I felt such shame and was so anxious about seeing any of my colleagues that I could not envisage any kind of “return to work.”

And…it did not let up.

My mental illness, as it was defined later by a treating psychiatrist, was a reactionary one based on my personality and my role in the school.

It would, over time, resolve but there was medical agreement with my G.P., the employer’s rep and that of work cover, that I could return to “a school” for some days a week but never in the role of a school executive.

In 2003 all that felt like for me was:

F A I L U R E.

 

How I Was Affected By Schools.

Before I continue.

I lived about (then) 40 minutes from the school. I love schools! It had been my life…as a kid and then becoming a teacher and of course, having our children and grandchildren attend schools.

But, I was so scared, worried, ashamed and threatened by “schools” I could not even drive on the road (Windsor Road) that would have been my way to my school without feeling ill.

I was a proud (still am) Grandma but my first foray into the grounds of the school where our daughter was a teacher and our granddaughter in an Infants’ class made me highly alert.

I still felt I was the principal within that school, watching children running everywhere and wanting to tell them to stop. It was not fun. At all.

But, I was also not a victim….and I refuse to play that role any time.

I did know though that I was ill from the stress of my role in a school and so I took the chance to get the help of professionals and did a lot of work for myself. This involved seeing a friend each week for a coffee and over time, driving on the road that went to my school…and one holiday time, I went back and drove around the perimeter. I was sad and it felt wrong that I had to leave it as I did but I also know my health was paramount.

3 amazing grandkids who love me unconditionally and their presence in my lives helped me in this awful time.

 

Giving Up The Role For the Greater Good. 

Despite the urging of my bosses, the meetings with the work cover people and my professionals who agreed I would choose to do what I had to, I could not return to school. Or any school.

What then?

To ensure the school was able to progress into 2003 from my day of departure in September 2002 I relinquished my role.

It could then be advertised for a replacement principal. I was visited at home sometime after that by my then school office assistant who had brought me any personal items from my office and some cards and I recall getting flowers.

I was a sad but relieved person that not everyone ‘hated me’ there.

Photos remind me of my literal ups and downs re weight. Far right, 2003,I was ‘looking good’ but feeling awful inside.

 

But, How Will We Survive Financially?

At this stage of our lives as a couple, we had a mortgage on the house, my husband was in part-time work and I brought in a good salary as a school principal. Work cover continued to pay that but over time, as I stood my ground about not returning to the Department of Education  because of my health things got tricky for us financially.

 

Don’t Give Up Your Superannuation People!

I married my husband (teacher in NSW Dept of Education) in 1971 and in 1972, as I returned to work after maternity leave we made a short-term financial decision that would (still does!) affect us negatively. Back then as both of us was paying into the then BEST ever Super Fund “I” could opt out and save us some much needed dollars. We spoke to my accountant father about this who, it seems, saw this as a win….and over time, agrees “NOT right”.

The reason is this. None of us knew then that  by 1980 my husband’s health would deteriorate to the point that he was medically retired and was placed on a pension from the Super Fund. I was working then and continued to do so, but still had no super. At all.

It was in around 1985 again, my father who advised I try to get back into superannuation. Made sense but nope, I could not.

Once opted out, I was not allowed in….but wait “we have a new fund and you can join that”.

I did. The new fund was different but I did pay into it. I had a sizeable lump sum there in 2003 when I was making up my mind how to access it. Aged 52.

 

Getting Paid Out. Not Easy. At All.

By the beginning of 2003 and into the first few months, I was being harrassed strongly encouraged by my employer and work cover to ‘get back to work’.

Let me tell you now, it was worse in some ways than how I had to leave my job.

Phone calls, meetings…doctors’ appointments, psychological testing…so, with the agreement of my G.P. I decided to “medically retire”.

Um. No. There is no such thing now.

The new and subsequent super funds that took the money from  NSW Dept of Education teaching staff only ever paid out a lump sum IF you were declared NOT FIT TO WORK and you have to RESIGN first.

No pension…and YOU need to prove you are not fit for work.

  1. For someone like me, a dedicated and loyal employee from 27.1.1970 to HAVE to resign was C for crazy but we were P for poor when my salary was being slowly stopped
  2. I filled out the form. It was awful. I also added, though, that I wanted “approval to teach”. I did not want any issues in case I wanted to ever have a day as a casual teacher. I would be pleased I did.
  3. It was accepted. Leave paid out.
  4. I was now free of the dreaded work cover requirements
  5. Got all the forms from the State Super People and completed them…along with the documentation from my G.P. and others.
  6. Attended one of the most stressful appointments ever with a psychologist from State Super and was obliged to complete a 500 question survey to assess my mental health and ability to work.
  7. Found out my application to access my funds  was “Rejected” after that horrid experience.
  8. You are still fit to work according to our rules.
  9. “Dejected” and now time, finally, for me to get some legal help.
  10. My union, N.S.W. Teachers Federation, were wonderful once I got to outline to a welfare officer what had happened.
  11. She arranged a meeting (free) with their lawyers and they heard the rejection story and saw the documentation from the State Super Board.
  12. The lawyer took my information, along with the State Super letters and my reports and so on and sent off the missives that….eventually allowed me to:
  13. Access all of the funds as a lump sum
  14. And retain my right to return to part-time teaching work if I chose.

We paid off this house….

 

Relieved. Getting Better. Breaking My Ankle. Retirement Means This. 

From paying out the mortgage there was a big sigh of relief.

There was also a relatively good amount of money from leave entitlements and by June we decided to “splurge” on a Far North Queensland holiday for 2. We even got a car to drive us to the airport. That was cool. But I must say, for my poor husband whose spine is very damaged from surgeries and more, the flight in economy for over 3 hours was not a good one at all. I was OK but he was not. We picked up the hire car and I drove via the Captain Cook Highway on that most beautiful trip: from Cairns to Port Douglass. Disappointingly though the apartment was accessed by a series of flights of stairs and by the time we got inside, my husband admitted “I cannot fly back like that”. My pain is too much. I agreed. So, the luxury of a return trip by business class meant comfort but took a huge amount of money to obtain so the holiday’s effect was negated! His health was worsening from the load of high school teaching which he took on after the business was liquidated in 1996 so, retirement was his plan too.

We were OK financially without a mortgage but by the time I had a few months at home I sought an art class (it was great) and became a volunteer with the Smith Family. It was around November after I had been answering the phones for them for people requesting Christmas Hampers that I had an accident. At home.

It was a rainy afternoon, I parked on the sloping driveway and as I got out of the car, one foot slipped, and the rest of me came with it, twisting my right ankle badly. I tried to call to my husband – from the letterbox…on the driveway and he did not hear, so I crawled up and made it inside.

Not wanting to over-dramatise it..but I should have actually…I waited for my husband to have a cuppa and we drove to the local medical centre.

Rooky error. I literally had to hop from the car with my good foot as the very sore foot could not weight bear. Oh. The G.P. agreed that X-rays were needed and they had that facility there. After the X-ray showed broken bones, it was “off to local private hospital” because this needs specialist attention.

Long story short: back slab applied, in-hospital stay, saw preferred orthopaedic specialist, “we will operate tomorrow and pin the fibula and tibia”. He did. I came home needing a wheelchair around the house as I couldn’t use crutches (hands needed surgeries for carpal tunnel etc) and I was stuck. The best part was shortly before Christmas at a check up I got a fibreglass cast and then could shower and even get in our pool but getting out was too hard.

Oh, and about that fibula of mine…I did get the screws out sometime in 2004 and in 2017…guess where that fibula went….HERE: The upside down U shape. My fibula cut into 3 with abutments added.

New Jaw is seen here

This sure was a year, 2003.

We did have a lot on our plate between us. But we also had a great family supporting us with care and love and three grandchildren to bring joy. The next year 2004 would prove to be significant too but with some great stories that helped re-build me in many ways.

Grandkids helping me, newly without plaster, to stand up!

Just after my cast came off, a celebration for my Dad’s 80th birthday.

Let’s see what Chapter Sixteen will bring!

Thank you for reading my story started over 3 years ago.

I do print the blog pages out and have them in a folder for future readers.

What were you doing in 2003?

It seems not that long ago, but of course it is 17 years ago!

Denyse.

 

Link Up #190.

Life This Week. Link Up #190.

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