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.

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.

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.

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.