Wednesday 18th May 2022

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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2 Years Of Change & Uncertainty In Covid 19 Times. Pt. 1/2. March 2020-2021.16/2022.

2 Years Of Change & Uncertainty In  Covid 19 Times. Pt. 1/2. March 2020-2021.16/2022.

I’m composing this post getting close to the 16 March 2022 which marks the 2nd anniversary of “covid bringing change to the way we would be living our lives”…as announced by the Prime Minister of Australia.

There was already much happening in the media as we watched what was happening in other countries….and from where it all seemed to start in Wuhan, China in the latter days of 2019.

My post is about how it affected me, and our family and in some indirect ways, many of those who read here too because of the state-based restrictions and federally based ones.

Dear readers, we are a complicated country for rules and governance and it all goes back to 1901 when we became a Federation of States & Territories: Australia.

The short story is money comes from the Federal or Commonwealth governments (Australia) and is filtered to the States via government of the day policy AND State decisions are made for Health and Education.

Look, sorry, it’s hard to get a handle on this at times….I know. I lived with it as a school principal. Nevertheless, here’s my post, mostly with photos, marking the two years of:

CHANGE

and

UNCERTAINTY

2020- continuing into its third year…2022.

March 2020 onwards….

I was so fortunate to have had both my eyes surgically operated on for cataracts in the week before EVERYTHING changed. Phew. I was also able to get to have an in-person head and neck cancer surveillance check, attend a head & neck cancer  charity ball as the speaker, and to be WELL!

 

And then, over time, we knew we had to stay at home as much as we could. Necessary outings were to:

  • the supermarket
  • the pharmacy
  • the doctors

I could no longer follow this: going out each day to have a coffee and browse at the shops. 

On occasion, when safe, we used “click and collect” for stores such as Big W, Target and Bunnings. We did not do click and collect groceries as it became unreliable, and expensive. I was prepared to take the risks. I shopped quickly, with plastic gloves on, and a mask. However, many food and other items became rare or not found.

Yes, there was such a thing as a toilet paper blitz (I confess, we got in plenty) and not many choices, if any, in fresh meat etc.

So much changed because of panic buying, employment changing as people got covid and…the whole supply chain was affected: truck drivers, distributors too. Anything that might come by plane was not easy to come by because flights changed significantly, and ships were also not allowed to dock if anyone on board had covid.

We all watched the updates on T.V. with the N.S.W. Premier, the N.S.W. Minister for Health, and the Chief Health Officer….for a while, then in our case, we stopped.

It was far too worry-inducing.

It was, for some people, a compulsion to watch and then tweet about it but in my case, I decided better to stay away from those kinds of updates.

Of course we did as requested, and at the doctors’ we had to comply with questionnaires about symptoms (still do) before being seen OR as they preferred then, via telehealth.

April into May 2020.

We were surrounded by neighbours not normally seen as everyone worked from home, and schooling was remote learning.

Every day we saw many people strolling around the neighbourhood. Gyms were shut.

We got through a very quiet Easter.

And as one way to remember “A.N.Z.A.C.” Day 2020, people around Australia held their own driveway Dawn Ceremonies.

Our granddaughter turned 21 early May and there was still travel restrictions from where we lived to Sydney and vice versa…but by Mother’s Day 2020 we got to see family.

We did a socially distanced photo!

Close for this one: Mother’s Day 2020

June, July and August 2020.

I needed surgery (and had probably put it off for too long) so that consumed the next months for me. Even though I had had 4 surgeries for head and neck cancer, this particular surgery: repair rectal prolapse was not a great prospect. I know, however, it WAS a great one to have but I was a scared woman before it, and not because of covid. I admit though that with doctors and hospitals I did it mostly alone because of Covid. My husband was allowed to visit me in July but not for the wound debridement in August.

Covid Meant Rules Changed A LOT.

September to December 2020.

It was not like the world we knew before Covid.

Doctors and other health professionals took a lot of care to see that no-one with any cough/temperature etc came to their rooms.

I still got my September 2020 Cancer Check at Chris O’Brien Lifehouse…lots of safety measures and most of the place were the public would normally be present were closed. Patients with cancer have low immunity and that was the reason such strict measures were in place.

There was talk of vaccines being developed.

Economically, we were OK. We are retirees, and receive a part pension. Many others I know had to ask for supplemented income and in the first year of Covid, it was pretty stable, getting people paid, able to stay at home to work. Remote schooling continued on and off. It was very hard socially on many.

Kids really missed their friends. As did most people who enjoyed socialising. Some though, I know, loved being at home working and would like that to continue! We managed our trip back to Tamworth in October 2020 and that was a special one.

Sadly, we did not get to have Christmas as planned with our daughter and her family as Covid ramped up just before Christmas, on Sydney’s northern beaches. Although she does not live there, I had seen Dad who lives at Dee Why AND visited Manly, so I had to have a test, which proved negative and I had to come to Sydney for a mouth check so rather than both of us risk a Christmas Day travelling…I dropped off the goodies and gifts on my way.

Little did we know that the NEXT year’s Christmas would also be affected. Sigh. Next post!

January 2021 – March 2021.

I like to plan and have good things come together well.

So, I did get to see my father for his 97th Birthday. I did not get to see some family for their birthdays just because nothing was planned and we would see them soon.  The restrictions into January were very tough on visitors to the home.

We could only have 5 and that meant our PLANNED Golden Wedding Anniversary on 23 January 2021 for 13 had to change. We held a lunch for our son and his 4 on one day and then on the actual day, for our daughter and her family. It was a lovely time….and I have written more here.

By February things were less restricted and we were able to have ALL the family together for a morning tea celebrating my husband’s birthday.

And then school was back…I think…in a very restricted way over time. Our youngest granddaughter started school and then, later in the year, was part of remote learning for what seemed forever…more next post.

That was the twelve months…March to March …about Covid in particular.

 

I dealt with the uncertainty by keeping as many of my daily routines as I could.

  • I always got dressed each day before having breakfast.
  • I made sure my exposure to social media was less over time as I knew it affected me.
  • I gave myself little inner talks most days about what I COULD control and what I could not…I admit, I do this most of the time.
  • I also had faith in how the country was being cared for at this most unusual and uncertain time.
  • This slowly changed, but not in the first year.
  • I learned that I can get over things I have planned that cannot work out.
  • I also knew that gratitude found on the hardest of days was a help.
  • I know getting somewhere most days into nature was important and we have such a range of places here….and I know I needed to record photos and videos to share.

And the BEST part: March 2021, we received our first Covid Vaccinations: Astra Zeneca. 17 March 2021, the day booked once they opened.

I also wrote posts here here and here for 2020, as part of Telling My Story:

Telling My Story. Image #8.

How was March 2020 to March 2021 for you, Covid wise?

Take care,

Denyse.

Joining in with Natalie for Weekend Coffee Share today

Thank you Natalie.

https://natalietheexplorer.home.blog/

 

 

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Word of Year Revisited. 49/51. #LifeThisWeek. 129/2021.

Word of Year Revisited. 49/51. #LifeThisWeek. 129/2021.

Before going on, it was my husband’s words, on a birthday card envelope that reminded me to smile.

I then considered he was right …(I should tell him as he thinks I rarely admit he is right)….I also know that my upper prosthesis makes my smile the nicest one I have ever had. For those who may be new here, I had all of my upper mouth and part of my top lip removed in July 2017 when cancer was found. The whole story is here.

From my post in January 2021 about the word of the year.

Why “SMILE”?

  • A smile is a valuable form of communication and connection.
  • I know for some people smiles can be hard to manage depending on the time and circumstances and not everyone is a ‘smiler’. That is what makes the world go round, we are all different.
  • I too do not like being told “smile!!”. Umm. No, unless I have the emotions that warrant a smile, I may be able to slightly fake it but truly I prefer the genuine smile.
  • I know there are many more muscles used in the face to frown and far fewer to smile and that can be a suggestion as a mood lifter.
  • In fact, the old adage of ‘fake it till you make it’ can work as a psychological tool at times. Try it.

How Did Smile ‘as a word of the year’ Help Me?

  • I know it made me ‘smile’ when I thought about the word, and knowing I needed to act it. And as it says above, it works!
  • Nevertheless, there were non-smiling times in 2021 because things turned tough, and lockdown was not something I enjoyed 100% every day!
  • However, not smiling did not help at all, so it was within my best interests not only to FIND reasons to smile but for my health’s sake…and that of the man I live with…it was better to smile, than frown…most of the time!
  • It made me find small things to be grateful for and to reminisce about happier and fun times with grandkids to bring that smile back
  • I know getting out into nature, and doing a selfie or 4 reminded me to smile and be grateful to be vaccinated for Covid19 and well.

My Mouth Looks Better with a Smile.

  • It really does.
  • At rest, my mouth shows the rigours and remains of the loss of so much of my top lip and that the area has receded.
  • However, it can hurt a bit to smile because it is stretching the mouth that was reconstructed over the years 2017 into 2018.

 

Did I Always Smile? 

Mostly, but there are, for reasons of me not liking how I looked then, fewer photos. What a shame, because now I realise I was trying to hide what I felt ashamed of…my size and my smile. My teeth, before the bridge was added were uneven. Now, I say to myself that “I” need to let go of those old stories. I did what I could as I lived a very challenging and full life of work, career, study, care and commitment.

How Did My Smile Come Back?

Surgeries x 4, T I M E in between, careful work by my prosthodontist (right) over many, many long hours for me ‘in the chair’ at Westmead Oral Sciences…and an upper prosthesis of teeth that IS my smile now, some 14 months post first big surgery aged 67.

And My Smile Is From Mum! 

It’s the saying in our family that Mum could turn on a smile. And she did. However, she was not always happy but looked like it when the cameras where out. Seriously though, Mum had all her teeth (as does Dad still)…I got the rotten teeth gene there. And she smiled. Here’s a compilation from the photo collage I made for Dad that he has in his Unit.

Mum’s smile for me….72 years ago.

Some Familiar Smiles

…and yes, some are more like my Mum’s but ALL are smiles from those I love….

Happy Birthday Mum…born 6 December 1924. You’d have joined Dad as a 97 year old today…the day I post this but you are not, and to be honest, you’d have found very old age…hard yards. Love this photo- from a family dinner celebration. 

Noreen’s Smile

 

 

Did you have a word of the year too?

I am not sure about next year.

As per usual I will wait….

Thanks for reading and commenting today.

Denyse.

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Questions. 31/51. #LifeThisWeek 94/2021.

Questions. 31/51. #LifeThisWeek 94/2021.

I am a question-asker.

I tend to ask a lot.

I am also an answer giver too.

However, I remain naturally curious and so, as a result have asked a LOT of questions over my 71 years on earth.

When I was seen by my head and neck cancer surgeons on 18 May 2017 I may not have had many questions because to be honest I was in shock as I had only learned of the diagnosis,the day before.

So, in the weeks that followed I found I did have specific questions, that I did not want to try to navigate on-line and my husband and GP did not have knowledge, so one of the kind surgeons answered them for me after I sent an enquiry to my head and neck surgeon’s office. His words helped me so much and reduced my worries.

I also found out then:

Do NOT be afraid to ask questions. There are no SILLY questions.

It’s now over 4 years since I was that very worried woman in a clinic room at Chris O’Brien Lifehouse, where the head and neck team met us: me the patient with B my (now) carer.

August 2017

I have, over the years, also had the help of a psychologist to get my somewhat faulty  thinking and ideas sorted. I was not a 100% emotionally well in the years 2014 into early 2017 but I am also a problem solver. However this was one problem I could not solve by thinking my way through. I needed to both accept the emotional upsets I had and why along with the BIG life transitions I was coming to terms with. I have written about some of those experiences in past posts.

Before I continue. Last year, this head and neck surgeon from Adelaide tweeted his explanation for cancer. I have always felt there is an element of ‘blame’ attached to some cancers. These words resonated. Thank you @guylrees.

 

This year I was sent a copy of a book which I said I would review. There was a throwaway line by me when I saw its title via social media when I said to the publisher, send me a copy and I will review it. Exisle Publications were serious. They did.

I have read the book by Dr Toni Lindsay and it answered even more questions for me.

  • Questions I did not know I even wanted answers for.
  • That is the thing about a cancer diagnosis, sometimes it takes a long time to determine what you need or want to know next.
  • This then is my summing up of the book: from a Head and Neck Cancer Patient At Chris O’Brien Lifehouse.

I have never met Dr Toni Lindsay but I do know of the many other professional services that are offered where I had my surgeries.

 

The Cancer Companion: How to navigate your way from diagnosis to treatment and beyond by Dr Toni Lindsay.

My Views As a Cancer Patient.

  • This is a well-written and set out guide, and its name suggests it can accompany a person (cancer patient, family member, carer) throughout the cancer experience.
  • It’s easy to read, and divided into sections:

Part One: On Treatment.

  • And then it was cancer
  • Normal
  • Finding your purpose and meaning. Part 1.
  • Preparing the treatment and having a plan
  • Chemotherapy
  • Radiotherapy
  • Surgery

I identified strongly with ‘hearing you have cancer’ as it still comes as a shock even though I had guessed. Of course, for me, like all, there were fears and worries. Lots of days when I know I would be doing something, and then it would hit me like a punch. “I have cancer”.

So, what I got from this part, as someone who remembers how it was, is that all is perfectly within an expectation as a newly- diagnosed patient.

Having a plan helped me but the plan often came in the form of a check list from me, to prepare for trips to Sydney where I would need to have surgeries, treatments at the prosthodontist and for the first year, my husband would need to drive me and stay somewhere close by while I was in hospital.

Even though we no longer lived in Sydney where everything I needed for my on-going treatment, we felt fine with the drive, and sometimes a stay overnight. My husband bore the brunt of times waiting…sometimes visiting our family, other times going for long drives until he heard he could pick me up.

We are also fully retired (aged over 70) and so making a plan was relatively easy as we did not have to take work and family priorities into account. There is quite a bit in this part for carers too.

Part Two: Off Treatment.

  • Finishing treatment
  • What if it comes back?
  • Finding your purpose and meaning. Part 2.
  • Why is everyone behaving like I am back to normal?

My reactions to what I read here were as if Dr Lindsay was in my head!

It did help ‘normalise’ my thinking and my progress.

For that I was grateful to have confirmation from someone professional.

I have a husband who is a trained counsellor and his help was good in that he could sometimes ‘calm my farm’ as they say when my emotions when a bit awry.

I am now, almost 100% able to do this for myself.

Ah. The advantages of time passing and experience as well as cancer free results at surveillance visits.

 

Part Three: Living With Advanced Cancer.

  • Living with advanced cancer
  • Finding your purpose and meaning. Part 3.
  • Planning and decision-making (even if you don’t need it!)

I read this section with feelings of sadness because I know of friends with head and neck cancer, and other cancers, who are living with advanced cancer.

I do know, however, that if there can be others support systems for example, psychologists and/or palliative care team with experience of helping people through, the prospect of what MAY lie ahead could feel less fear-based.

I would highly recommend not only reading this section but acting upon the help offered too. 

 

Part Four: The Psychology Part: How Can I Manage All of this.

  • Mood vs treatment
  • Anxiety
  • Sleep
  • Appetite
  • Fatigue and exercise
  • Body Image
  • Relationships and sexuality
  • Working
  • Being present
  • Being grateful
  • Managing other people
  • Pain

I have a great G.P. He started being my G.P. about 6 weeks before my diagnosis in May 2017.

Like my husband, he has been what I call a ‘cheerleader’.

Someone in my life who helps, encourages and supports me.

In the various times when I have been worried and scared, and this was prevalent a LOT in the first year, he was a voice of reason and reassurance.

I also have a professional team in Chris O’Brien Lifehouse and at Westmead Oral Sciences who I can call or email. Their help, at the other end of the phone after I have sent a photo or text has been exemplary.

In turn, all of the above has helped me see my way through.

Having a rare cancer: both statistically and type, I often found “I” became and still am, the expert in my mouth and its care. I

have learned a lot from those who helped reconstruct my mouth, along with my local dentist, but from my 4th year of recovery (about this time in 2020) I became the ‘one who knew’ most about my cancer and my recovery.

Some Final Thoughts.

This is a section in the book…

and I will add mine.

Knowing how I felt at the beginning of my diagnosis and how hard it was to concentrate with the spectre of an 11 hour surgery ahead of me, I could not have contemplated picking this book up and reading it.

I did ask my husband though and he says it would have been ok for him to have it at that stage.

Now, as I review my reactions and responses to my cancer in over 4 years, I would have been ready by about a year in.

That was for me.

Oh, and about the red balloon on the cover. It took me a while to find out about its significance. Dr Lindsay uses the balloon the illustrate how when holding a balloon on a string, it may occasionally pop back onto you, just like the occasional anxious thinking about cancer. In other words, the thoughts do come and go but they are not there forever. Or indeed they can be batted away. No longer controlling us. 

Others may see it differently.

Thank you to Dr Lindsay and those at Chris O’Brien Lifehouse who support patients and families and carers on the psychological path of a cancer diagnosis.

Thanks too, to Exisle Publishing for the book. No payment was made to me for this review, it was the gift of the book only. I am a truth teller and this is my review.

I give my permission for Exisle Publishing and Dr Lindsay to use my words within this post.

Denyse Whelan.

Blog Disclaimer:

My stories and photos along with suggested links and websites must not be seen as medical advice.

I write this blog from my experience as a head and neck cancer patient.  Denyse Whelan. 2021.

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