Tuesday 19th October 2021

Telling My Story. Chapter 24. June 2018 – 2019. Part 2/2. 56/2021.

Telling My Story. Chapter 24. June 2018 – 2019. Part 2/2. 56/2021.

The backstory first:

FOUR years ago now ….I thought it was time, seeing I had a blog, to start writing my story. It was on advice from a blogging friend, now published author that I did. Then, for a long time I did not. Because cancer was diagnosed.

Nevertheless, I eventually returned to the story and now I am at Chapter Twenty Four. Telling the story in two parts. Today is Part 2.

So, in keeping with my ethical approach to all things, I am making the chapters about MY recollections to various changes in life for me, and us, and life as we knew it. I hope I can continue sharing the story without any intentionally negative or hurtful references to others who are in my life as friends and family members. All of the stories to date found here.

And with this chapter, a recent photo…taken overlooking the harbour at Dobroyd near where I grew up close to Manly N.S.W.

Tah Dah! This Chapter’s 2nd Part IS the last….for now…and into 2021 of Telling My Story. Only took 4 years!! 

The overriding memory I have of this period in my life is change. Change for the good. Change in my outlook as I moved further away from cancer surgeries and recoveries towards L I F E as I wanted to have lived it in retirement but far too many things were in the way. The series year of 2015 and 2015 tell more.

So, as best as I can, this rounding up of Part 2, thus ending my publication is going to have more photos and memories along with, fewer words.

Are you ready to come along?

Early April 2019.

As my confidence shot up and I was prepared  drive to places and see things I wanted to see and experience, Newcastle Writers Festival headed the list. A conversation (longish on twitter) with author Trent Dalton ended up with me LOVING Boy Swallows Universe and he would be there on the Sunday I was. However, I had booked to hear my long time friend & author Rick Morton speak on his first book One Hundred Years of Dirt and have a catch up if I could. I met my blogging friend Lisa for early/late lunch and we went to Rick’s session. I had also booked to see Jane Caro speak on her ground  breaking book Accidental Feminists which I had devoured. I hadn’t see Jane in real life but we were well known to each other from social media.

What a day!

The upshot.

This.

But wait there was more…I was stoked for this resurgence of my social life. Admittedly I was very tired and it was a challenge to find something to eat because of my mouth…but I was out there again. Yay. I also needed more than ever to calm and find peace within and I turned always to my art desk to find or create a new project.

Late April, Mother’s Day and into  May.

During the April school holidays, which coincided with Easter and one granddaughter’s birthday, so we entertained with great delight..always love seeing our family.

My daughter and I met at Berkelouw’s for Mother’s Day brunch morning tea and we rarely get ‘two of is catch ups. So that was awesome. My 2 year anniversary of head and neck cancer diagnosis was coming and my husband and I celebrated at one of our favourite places for morning tea. Then he said “time for your apple watch isn’t it?” YES. Please. Thank you. I had just joined a moving/walking challenge with the Department of Education so that was going to motivate me too.

About An Idea: Women of Courage.

Having read Jane’s book (listened via Audible too) and then seeing her interviewed about the findings and that women, are/were in general and in life, doing so much unsaid, unpaid work that it was women who suffered more in latter years because of separation/divorce settlements all favouring men. Her concern which is serious and major, and verified over time is that women, in Australia, over 55 are becoming the highest number and fastest growing cohort of the homeless.

Now, whilst I would like to have fixed all the issues Jane raised, and of course I could not, I did have this idea. It seemed to me that we women might feel empowered somewhat if there was a way to share some of our stories…as I saw them, of courage. That was it.

Women of Courage.

I knew many of there people, but would they be prepared to share something about themselves along this line. I set no targets, I asked politely, and received no for an answer with respect. I kept a list of those I approached on line with my proposal and by the time my launch time arrived I was ready with a great set of responses.

The first post, was mine, via introduction, and then it was time for Sam to share her story,

Ready steady….Women of Courage

In the weeks, then months that followed I pressed publish on  24 personally named posts and  one anonymous post in 2019.

I decided to stop sharing before December as I knew there would be fewer readers and then was ready to kick off again with Jane’s post

and onto 25 from named sources and 4 anonymous ones until it closed as series in September 2020.

This year, I am re-launching soon. 2021 series. From mid May…I like that time of year! Here is where all of the Women of Courage posts are.

June, July, August…..2019.

  • I can remember we had visitors for school holidays, my husband was unwell for some weeks with the flu even though the diagnosis took a while, I continued with my trips back and forth to Sydney to see the Prosthodontist less regularly but still needing reassurance and care…

 

  • I drove to Sydney in June and stayed overnight to see Vivid Light Festival from the harbour and to go to an event to celebrate the great work of the late Professor Chris O’Brien at the cancer care centre named for him. It was on this occasion I realised how hard it is for a post-surgery me to find food to eat unless I bring my own. I still grapple with this today.

 

  • I also made a quick trip to near where we used to live after a Westmead appointment and had an impromptu catch up with my daughter and granddaughter and a ride on the new-t0-me light rail.

 

  • I did quite a bit of cooking – as usual – because I need to cook for my needs. I also joined in the Soup for Soul Fundraising for then Beyond Five with my local Central Coast Head and Neck Cancer group with batches of small cupcakes. We did not know of course, that Covid, the following year would shut down all such gatherings, even restricting visitors to hospital to one for a patient or even no-one could accompany an adult.
  • I met with my local federal M.P. Emma McBride to get her support for World Head and Neck Cancer Day on 27 July. That is the date for it world-wide. I also shared more each week leading up to the date via my blog and social media in my role as an Ambassador.

Braver and braver and being prepared to say YES first rather than no continued to increase my ability to not only do hard things but to see them as small accomplishments building upon each other which is at the heart of exposure therapy.

Some Highlights: June to November 2019.

  1. Staying solo overnight in Sydney: to attend Vivid and then a conference the next day just as a supporter
  2. Driving to Hunter Valley Gardens to view what I had read much about
  3. Deciding that I really wanted to celebrate being 70 later in the year
  4. Getting great cancer checks with all GOOD news and not being as fearful of cancer’s return
  5. Becoming more interested in sharing what I could with the wider community: resources I made to The Big Hug Box and to Arterie at Lifehouse but also stopping when it became a little more of an overload
  6. Planning that I would like to invite blogging and social media friends to a morning tea to for me…turning 70 and being vulnerable enough to send invitations…Everyone actually said YES but on the day for a range of reasons sadly 3 could not come.
  7. Dealing with disappointment in a less personal way.
  8. Learning that living with I.B.S. and some incontinence might be a package* that came with ageing…and making allowances for myself with that. *In May – August 2020 I found a solution via surgery I was too scared to ponder in 2019 and I am well.

On Turning 70. 

Before my 70th Birthday, I drove to my granddaughter’s school (and daughter’s school)  to attend their Open Day. Loved celebrating gratitude for my life here:

  • Rather than dreading another zero birthday I celebrated with gratitude.
  • I visited my father a few days after my birthday to have cake and coffee with him and my brother
  • My actual birthday was the Saturday when our family came for lunch. Our daughter and her adult offspring, one with partner and her youngster and our son with his four.
  • My husband and I did the catering and our daughter made a cake.
  • It truly was a celebration of LIFE and to have this with those who loved me (vice versa) made it so special
  • A few days before I met with my social media/blogging friends too.
  • I received, unexpectedly, cards, flowers and kind gifts.

Loved this big surprise.

Lovely portraits of our 8 grandkids

 

Christmas 2019 Was Different.

After the loveliness of my birthday I was well-satisfied but getting more brave in my continued intentions to push myself further. This was when I agreed that we (husband and I) would drive to Sydney on Christmas Day – something I had always vowed would be too stressful) and enjoy a family lunch. Our son said to drop in on the way down as he would have his kids on Christmas morning. All good.

Unfortunately to his disappointment most of all, my husband had over-exerted himself the day before finishing off some outdoor work and was exhausted and completely unwell so I made the trip solo.

I remained determined to do this though on behalf of us both and to see the family. I even managed to  eat some Christmas lunch. Yay for being careful but also being adventurous.

Onward into 2020 with Gratitude.

I accepted this would be word for 2020.

I had already done a 30 days of gratitude challenge leading to my 70th Birthday.

I knew finding something to be grateful for each day was a good thing to do for my health.

Of course I did not know ahead of this just how much challenge 2020 would bring!

 

I actually blogged 2020 in 3 parts last year  for Telling My Story because I wanted to remember it well.

Here is the link to each post.

Part One 2020

Part Two 2020

Part Three 2020

Thank you for following my story. See how my avatar has changed in that time.

 

This is the ‘last one’ for quite some time.

The weekend before this post went live, I finally had all the printed copies of each post put in order, in two folders. They are evidence of My Life…as told via Telling My Story 1949 —-> and even if no-one else other than The Author reads them, I am so glad to have persisted!
They are located in the bookshelf along with other life records: my career in education, my cancer story and updates and family tree info.

Warm wishes,

Denyse.

Joining with Natalie here for Weekend Coffee Share.

 

 

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest

Telling My Story. Chapter 24. June 2018-2019. Pt 1/2. 52/2021.

Telling My Story. Chapter 24. June 2018-2019. Pt 1/2. 52/2021.

The backstory first:

FOUR years ago now ….I thought it was time, seeing I had a blog, to start writing my story. It was on advice from a blogging friend, now published author that I did. Then, for a long time I did not. Because cancer was diagnosed.

Nevertheless, I eventually returned to the story and now I am at Chapter Twenty Four. Telling the story in two parts. Today is Part 1.

So, in keeping with my ethical approach to all things, I am making the chapters about MY recollections to various changes in life for me, and us, and life as we knew it. I hope I can continue sharing the story without any intentionally negative or hurtful references to others who are in my life as friends and family members. All of the stories to date found here.

And with this chapter, a recent photo…taken overlooking the harbour at Dobroyd near where I grew up close to Manly N.S.W.

THIS post is the second last in the series. Part Two is in a week’s time. Thank you to all who have been reading and commenting on my recent posts about my life since head and neck cancer. I appreciate each and every one of you and your kindness. It helps me understand my need for connection and blogging does that for me. Warmest wishes to you all. Denyse.

 

June into July 2018.

About my mouth.

This is the month after what I hoped would be the final reconstructive surgery…(still is)….and it was winter, busy and I spent even more time, alone (happily) in my red car, driving BACK and FORTH to Westmead Oral Sciences…because…. T E E T H!

Obviously healing has to take place, and the work of this next stent, the one to push my top lip out more needed lots of T I M E.

You know, that thing you have to be P A T I E N T about when you are one!

During the visits to the prosthodontist, which could vary in time ‘in the chair’ from 2 to 4 hours, I listened to audio books at the boring times of having 2 lots of hands in my mouth…and used to ‘fiddle with’ my bracelets, or even a small crystal. I was not ever nervous but my boredom could lead to anxiety and so it was best I used strategies of distraction and relaxation. I was always very tired after my day spent at Westmead and soon learned to give myself a day off afterwards.

Nevertheless, I knew that my prosthodontist was working at all he could to get my new upper prosthesis prepared for when my mouth was.

Daily Routine Helped.

As I had started with photo taking in late 2017 for a daily outfit shot, and then going somewhere for coffee, this became a given as part of my routine to see me dress well, and engage with the wider world outside home. I still do this, no longer with daily photos but it is embedded in my self-care strategies.

Life went on.

In between times, I did not sit around.

Actually I do not doing sitting around very well.

I still had my daily routine of an outfit photo and usually went out for coffee. I went to view nature and I became increasingly interested in helping with spreading the word of head and neck cancer. I also found The Big Hug Box and offered to make bookmarks and loved using my art for good. I ventured an idea to the local library – can’t recall which month but it was with a view to me running a mindful mandala making course.

I even put a ‘how to’ on the blog. Teacher me was re-emerging.

School Holidays. Visitors. 

It was a treat to see our grandchildren when their parents could arrange a visit and on one occasion we had a late birthday celebration. I made sure I had some art and craft for the four of them to do and we spent a very pleasant day in the winter sunshine.

I continued to be out and taking photos and it was good for me to re-visit places where I held special memories of seeking solace and comfort.

 

Head and Neck Cancer: Sharing The News.

As I was someone who had no idea of this rare cancer when diagnosed, I wanted to make others aware, but I also know my Professor Jonathan Clark and others had begun Beyond Five to do just that. Finally, as July approached and with it, World Head and Neck Cancer Day on 27 July I swung into action. Beyond Five sent me some ribbons and brochures and I made contact with my local federal M.P. Emma McBride and she visited us at home to find out more. Emma remains interested in sharing. I also approached our doctors and dentist with a view to sharing my “wellness” and asking them to display information. It seemed like I wanted to give back.

I did.

Thank You: No Words Are Enough.

 In the year since I had been diagnosed, after my dentist has removed the bridge in April 2017, and I had the biopsy done by the oral surgeon in May 2017, I really wanted to share with them how I was. So, I did. In two personal visits. I have done this once more to the Oral Surgeon’s since and of course I see my Dentist each 6 months.

World Head and Neck Cancer Day and Meeting The Central Coast HNC Support Group.

My M.P. had written an article about me and head and neck cancer and it was within days of that, I was contacted by Lisa Shailer, from Central Coast Cancer Centre, who looks after newly diagnosed head and neck cancer patients. She invited me to the first Soup for the Soul event at Gosford hospital’s Cancer Centre and that was where my involvement with the local group commenced. It was also the first time I had met anyone else with a head and neck cancer.

August 2018. How LONG?

On 6th August, as my patience was really, really wearing thin …to get this upper prosthesis, I celebrated our daughter’s birthday with a S M I L E.…and the race for this to be ready and in my mouth began. I was so over it. I thought this would be such a change for me when it happened, I even made up a list of what crunchy foods I would try again. (Dear reader…it was not how she thought it would be)

After more trips up and down the M1, I sensed that 21 August was to be THE day and dressed up  a little bit more. It was. The day. It felt weird and good.

I smiled for a LOOOOONNNNNGGGG time.

First time I smiled….

 

After an adjustment from my prosthodontist.

September into October 2018.

I Could Not Stop SMILING.

Even though I had “teeth” screwed into my upper jaw in August, there were still quite a lot of adjustments to be made to the prosthesis by my prosthodontist at Westmead so that meant more trips to him. He was also making a bottom partial denture of a molar on each side, to clip onto my remaining 8 natural teeth to have better biting and chewing.

I sent a photo of me to my head and neck surgeon and he was amazed at the outcome too. So cool. I had my check up and he was so happy for me as were the other people who were part of my surgeries and healing times. I met with Nadia, CEO of Beyond Five as a potential Ambassador, and on the same day said hello and thank you to Gail O’Brien, wife of the late Professor Chris O’Brien, for her husband’s vision for his one-stop Cancer Care Centre, Lifehouse.

What it was not.

No way does it replicate my own teeth. However, I took some time to get used to that as well as speaking because my mouth was now more full of ‘hardware’. Eating was tricky – and still can be – as different foods required more chewing than expected and others were just too sharp or crusty for me to be able to manage. I also found (and find) I need something slippery to help the food go down.

BUT I had my SMILE back. And that was so good.

I was invited to share my story  at the Central Coast Head and Neck Cancer Support Group and used my long lost power point and Uni tutor skills to do so. It was well-received.

I visited family with greater confidence. Trips to Sydney were ones where I once only had emotional capacity to deal with the treatments but now I was getting more brave and doing hard things.

I met people for a long awaited catch up. I saw Dad more. I visited places where I had grown up. It was GOOD to be out and about and not all about head and neck cancer. I went to a Look Good Feel Good self care workshop but was a little disappointed that its relevance to me was little. Understandably my cancer it rare, but the 90% effort on the day was placed with those with hair loss from chemo and in general were for breast cancer survivors. I appreciate that my cancer is not visible either.

November into December 2018.

Invited to become an Ambassador for then Beyond Five, now Head and Neck Cancer Australia. This was a huge honour and so good to know I could be helpful using my education background and my personal experience of being a head and neck cancer patient. I met with the CEO, Nadia and Inaugural Ambassador Julie McCrossin at Chris O’Brien Lifehouse.

Back to schools!

I was invited to my granddaughter’s grandparents’ day and I went. I would not have envisaged doing this in the previous few years but handling my head and neck cancer recovery encourage me to use my new skills of confidence and greater resilience. It was great. I loved being back in a school. Then I visited my daughter at her school. Very proud to see the library she started from Day One of that new school.

Because of a blunder made in 2003 on my Service Medal, by the NSW Dept of Education at my retirement (when I had to due to work place issues and no chance for medical retirement) I tweeted about it once and my principal friend John Goh noticed and he retweeted it and the NSW Dept of Education Deputy Secretary saw it, and emailed me “we can fix this Denyse”….and the story of that is told here. So good to have my career recognised properly for me.

We hosted Christmas.

We had not had our family gather with us for Christmas for quite some years. Then for 2018 our daughter and her kids suggested coming to our place as they were mid house move. Again, bravely, I said YES and we were delighted to do so. I also had another Santa photo taken and when asked what did I want for Christmas I said “I already have it, I am cancer free and well.”

What Would 2019 Bring?

January 2019.

Birthdays!

Always birthdays first…my Dad…95

Then our son 40

And our grandson 18.

I didn’t see Dad on the day but had photos sent. Our son and his four kids came for a lunch and we made sure there was cake and candles. Our daughter had an 18th Birthday family lunch for her boy at her new place and we were delighted to attend.

We had not driven down the way – north western Sydney – since we last lived there and the changes are extreme. Former paddocks and dairy farms are cheek by jowl housing and that is the way these days I guess. Also is a reason traffic wise, why my husband was glad to be out of Sydney.

February 2019.

Busy month to begin with the first meeting in 2019 for Central Coast Head and Neck Cancer Support Group where M.P. Liesl Tesch, former Paralympian addressed us, sharing her story.

I continued to have check ups at Westmead for my mouth. In January of 2019 the upper prosthesis was removed – it is attached by 5 abutments (tiny screws) that are in my reconstructed jaw, for minor adjustments. As you may imagine, it is a challenge for something to fit well (and perfectly) so it meant trips to Westmead for this. As time went on though, my physical care of the prosthesis with waterpik and micro brushes – getting debris away from the abutments and gums, it has not needed removal since then. In fact, I can barely believe how well I have been able to maintain this because it’s something quite new.

I also found out, that the pain I often have in various parts of my mouth inside is all part of the body getting used to what is in there. After all, it’s got my leg bits inside. My team and being published as a story on Beyond Five.

My husband turned 70. He is the original no fuss man. However, we had hoped for a small family lunch. His body has different plans and we could not go ahead as he was unwell. Nevertheless he received family love and best wishes and we caught up with family later.

A wee tribute to him…..HE got me through so many of those really hard days early in my diagnosis. His counselling skills were very much needed along with the loving and caring man he is. The night before my surgery on 6 July 2017, it was him sorting out where he would stay rather than the awful (for us) place where we had been recommended that helped calm me as I was concerned about his welfare while I was ‘unaware’ in I.C.U. Then when he visited me from home on the Central Coast, his very presence on the balcony of my room was so reassuring….love him, lots.

March into April 2019. 

Re-reading this post as I go, I am aware that it sounds like I was on the go, doing, doing and recovering and doing even more. In some ways I was. It felt SO good to be getting better after almost 2 years. It was though one of those situations with me where I.B.S. would return when I was feeling particularly stressed. And that its pattern would be more likely after any stress event. Even the good ones. I had to learn to pace myself better.

I had to learn to add in time outside.

In nature.

Taking walks.

Being a fun photographer…and then also using my creative senses to enjoy art of some kind to fill my visual and kinaesthetic senses.

Remembering my late Mum’s death anniversary here.

Learning where to STOP..is here. Next time, will be Part Two: April – December 2019.

Reality of my reconstructed mouth….

And in the next part of Chapter 24, “this” concept changes into a plan for a blog series.

Thank you so much if you made it this far.

I appreciate that!

Denyse.

Joining with Natalie here for Weekend Coffee Share.

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest

#LifeThisWeek. 16/51. Telling My Story. Ch. 23. 17 May 2017 – May 2018. Part 1/2. 48/2021.

#LifeThisWeek. 16/51. Telling My Story. Chapter Twenty Three. 17 May 2017 – May 2018. 48/2021.

The backstory first:

Almost FOUR years ago now ….I thought it was time, seeing I had a blog, to start writing my story. It was on advice from a blogging friend, now published author that I did. Then, for a long time I did not. Because cancer was diagnosed.

Nevertheless, I eventually returned to the story and now I am at Chapter Twenty Three & It’s One Post.  Two Parts. 

So, in keeping with my ethical approach to all things, I am making the chapters about MY recollections to various changes in life for me, and us, and life as we knew it. I hope I can continue sharing the story without any intentionally negative or hurtful references to others who are in my life as friends and family members. All of the stories to date found here.

And with this chapter, another photo…taken this year overlooking the harbour at Dobroyd near where I grew up close to Manly N.S.W.

Telling My Story. Chapter Twenty Three. Part One of Two. 17 May 2017 – May 2018.

Why I thought I could  tell this part of my story in just one post it’s not possible….

There was more I wanted to add to Telling My Story even though I posted a great deal about the topics contained within this post I am adding links back to those posts as I see applicable.

Last time, I ended with these sentences:

And that is where this Chapter ends.

If you have guessed where it’s going, then you are probably right.

Wednesday 17th May 2017. The Day.

I was quite relieved after the harrowing processes explained in the last Telling My Story.

On the morning of Wednesday 17th May 2017, my husband drove to his lifeline counselling volunteer role and I sat finishing off a late breakfast when my phone rang. As soon as it did, and I knew the voice, I sensed the words that would change my life:

Denyse, you have squamous cell carcinoma in those gums. Late last night the lab rang me and I left it till today to let you know. I am so sorry.

There was a part of me that was sad and shocked but not surprised and then there was the part of me that could kick into organisational mode after a very tiny cry with the lovely Dr Stef. She told me of the organisation from the Oral Surgeon’s and how I would be referred to a “Dr Clark” in Sydney….and to make contact with them. I hung up, then practical me called my husband’s workplace, and asked them to get him to call me. He did, soon enough, and came straight home (40 minute drive) as soon as he knew. This gave me (organised me) time to:

  • ring my G.P. for an appointment that afternoon. I needed to share and also plan some kind of support to get me to Sydney.
  • ring the rooms of the (Dr) now I know Professor Jonathan Clark, to make an appointment and I was offered one the very next day with his colleague.  I took it.
  • I did some research of where the place was we would be going to and…awaited my husband’s arrival.

Yes I had a long hug with my husband and a cry but, in so many ways THIS news answered so many questions that no-one considered a possibility.

We told no-one, saw our G.P. who was shocked but very supportive and helpful, and that night prepared myself as best I could to navigate 3 things I had become fearful about:

  1. drive in the car as a passenger
  2. go on the M1 and into Sydney
  3. finding toilet stops along the way

What Happened After That News.

It’s all in my first post about my cancer is here.

I was surprised in some ways about my attitude to the diagnosis and what came next. My husband reminds me though, that I had gone from the unknown to the known – a very long time it took too – and that is always better to deal with.

We told no-one other than our G.P. my former G.P. and my dentist. We wanted more information before sharing with our family: my father and our two adult children. Once we did that, there was for the sake of family re-connection a softening of what had been some difficulties within our extended family. Our son made the trip to see us and sharing time with my grandchildren was heartening and gave me great support for what lay ahead. And our daughter came once I was back home.

How to Wait.

Not good at this much but over time, I have learned some strategies which help me.

  • One is to go outside or drive somewhere pleasant to view nature and I did this.
  • Another is art or creating a mandala and I sure did these.
  • I did not, even after a brief look, trawl the internet. I had already worked out my cancer was rare.
  • I cooked. I knew I would have no upper teeth when I got home.
  • I prepared as best I could, clothing and other times for hospital
  • Completing the hospital admission forms. Oh my. They take FOREVER. But over time I did them.
  • Left all my  personal details such as passwords and so on to my husband and put them in writing, and signed my daughter into my facebook account so she could update people.
  • Go for a drive while I could.
  • Walk on the beach.
  • Take photos to remind me.
  • Send emails to the Ass/Professor with the questions I came up with. He returned with great answers. He also referred me to then, the new site called Beyond Five but my brain was not up to searching much at all in June 2017.
  • Ask a few times as the possible date drew closer, if the surgery was going ahead
  • Get a very short hair cut.
  • Pack a bag of things to do such as an art book, some half done mandalas and markers and leads for my iphone
  • Buy a new ipad. Well, my old one needed replacing!

Will I Blog About Cancer?

I thought long and hard on this one and perhaps it was a protective thing at the time. I did not want to be only a cancer blogger as I wanted to keep writing and sharing other parts of my life. This post before I had my surgery in 2017 is here.  I decided this may help others who have a cancer diagnosis like mine so over time, I began leaving them in this part of my home page. But let’s not get too far ahead of me!

How Will My Life Change?

I think it already had.

Life had been very challenging and with the cancer diagnosis there was a small surge of resilience in amongst the awful worries and fears and this in its own way buoyed me for the surgery which would be brutal, disfiguring, long and…having unknowns in  the outcome because “until all the biopsies etc come back” we do not know whether you will also need radiation.

I did however, stick with my tried and true helping mechanisms. They were walking outside, noticing nature, writing non-cancer blog posts, sharing on line, chatting in person or on the phone and seeing our son and daughter and their kids was a tremendous boon. I got the sweetest care package from my Aussie friend who lives in San Francisco so I felt very cared for and loved.

These Posts Tell The Update and Post-Surgery Stories Here.

First update after surgery is here.

Second update after surgery is here.

Third Update: now home and how things are going is here

What I Learned About Me and Cancer -4 months on is here

But What Else Happened?

The time of recovery at home was long, slow and methodical as it needed to be for someone who had part of her leg put into her mouth. OK, I can say that!

The good news at the 3 week post-surgery check back in Sydney’s Chris O’Brien Lifehouse was that there was no cancer found in my lymph glands and that whilst there was some in the (jaw) bone, the team would not recommend radiation as it might improve things for me to 96% whereas with ‘just the surgery’ I was at 95%. We agreed wholeheartedly and to be honest, I am terrified that IF my cancer came back radiation may be the answer. Too many complications to live with as I now know from my friends in a facebook group so I try not to go down that path of what if.

What changed for us as a couple is that over time, my husband wound down some of the study and volunteer activities he was doing. He was needed at home more but I was also pretty determined to be independent once I could be so we reached a good arrangement. As I became more mobile, even though my leg was still getting treatments by the community nurse, I could go to the shops.

I admit it was hard at first because I did not have much physical strength and I worried about people bumping my leg, but over time it settled. I even managed to drive to Dee Why to see my Dad after 5 months and he was so relieved to see me. I arranged to meet up with my daughter and granddaughters for a morning tea at Hornsby and we were delighted to accept the invitation to attend our eldest granddaughter’s 21st in Sydney.

But wait, there is more.

I had lost a LOT of weight before my cancer was finally diagnosed and I needed NOT to lose any weight once home in July as keeping weight on, helps a person with head and neck cancer to recover. I had nothing much that fitted me any more and finally, F I N A L L Y I admitted to myself it was time, around the end of October to take an interest in my appearance AND to go somewhere each day. Later in 2017 I wrote about my weight story    here

Dressing With Purpose, Having a Photo Taken and Going For Coffee.

This improved my emotional health big time, had me socialising again in person and on-line and even though I had no teeth up top and my smile was non-existent, I was back. Connecting and loving it.

Being a Part of Celebrating Women.

Before I knew I had cancer, I bravely offered to share my story with Dr Kirstin Ferguson for a project she began (it grew x 200) on social media. I sent in my responses to her questions, with some photos and a week before it was to be live, she let me know and I had only just found out I had cancer. She said, pull out if you wish and I thought…nah, tell the story. It went ahead, and later on in the book she and Catherine Fox co-wrote, my story is there too!

 

In a book! Me. Wonderful

More Surgery. More Recovery Time. 

When I was in I.C.U. after the first and big surgery, I was told by one of the registrars’ with my head and neck surgeon’s team that I would be having more surgeries. I was devastated. I said nothing at the time, but when I got the chance, and I was well on my way to recovery and in a room of my own at Chris O’Brien Lifehouse, I spoke to her about how that was, for me, not the best timing for her comment. She said she would think on that. Perhaps I had never considered that more surgeries were to come…or had not wanted to know back in May 2017 at my diagnosis time, but yes…more surgeries.

November 2017.

Day Surgery. On the day when we heard Australia had voted for same sex marriage. The day itself started very early with a drive from Gorokan to Camperdown in peak hour traffic to arrive by 10.30. I disliked the pressure of the concern about arriving on time and for the future surgeries we (I asked!) decided to stay the night before in Sydney. Reconstruction surgery again. Inside my mouth again. Pain and more as I never quite understood the work these marvellous people did. However, new pain too. On my right thigh from a skin graft taken to go inside my mouth. I do know that after my check up visit in December, my husband had to take photos of the inside of my mouth to send to my Professor on a regular basis. We did. Things looked OK to him. I never knew really because in a very small space there had been a lot added inside me!

Happy 68th Birthday and Congratulations to Our Daughter. 

Our daughter finally completed her Masters of Education (Teacher Librarian) this year and we were so pleased for her. She did it tough over the time, raising kids solo, house moves and a new school in the mix, but she did it. We couldn’t attend her graduation so we did the next best thing…celebration with lemon meringue pie.

Turing 68 felt 1000% different to turning 67 (last post) where anxiety plagued me and a sore mouth. I celebrated out with a cuppa with my husband and donned a dress for the first time in years. Then our eldest granddaughter came up to share the celebrations, and I found out, that I could no longer blow out the candle on a cake! That night I had the amazing (hah) experience of sitting in a bath for 30 minutes and allowing the seaweed based dressing on my thigh to come off gently. It did. Over time. Good to be able to shower again too.

And I will be back with Part 2 of this post in a bit. Starting from December 2017 and finishing in May 2018.

Thank you for your interest, comments and support.

Denyse.

Link Up #236

Life This Week. Link Up #236

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! Next Week’s Optional Prompt: 17/51 Joyful. 26 Apr.

You are invited to the Inlinkz link party!

Click here to enter


FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest

Telling My Story. Chapter Seventeen. 2007. Part One. 79/2020.

Telling My Story. 2007. Part One. Chapter Seventeen. 79/2020.

2007 was a very full year of significant events which is why I have made it a two-parter! 

So, about 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…drum roll… Chapter Seventeen. I know it’s been a while since I last posted. All the posts are here if you would like to check them out.

 

We Did Not Know What 2007 Would Bring.

Of course no-one can predict a year and what it might hold….case in point 2020…but this one sure did challenge me and those I love. Where to start? I guess, of course right at the beginning of 2007. And as I began to write, I realised I would need to make this a Part One and a Part Two year. Next week, I will conclude Telling My Story 2007.

My teaching role: changes. Not happy, but at least I have some paid work.

I am a practical and resourceful person who love(s/d) her teaching role. After gaining my Post-Graduate Certificate in Teaching English to Speakers of Other Languages (TESOL) in 2006 I heard the disappointing  news that I could not stay at the school where I had started (again) in 2004. There was now a permanent person appointed. What to do? I sent emails to a few former principal colleagues  about my availability as an E.S.L. teacher 3 days a week and within a few days, was able to say “YES thank you” to Sue at H.P.S. I would add to the staff she said, not only my E.S.L. expertise but my leadership skills. OK. Flattered of course. I readied to leave the school I loved and my dear husband was my courier of all things teaching to the new school to a very old half a portable building in the back of the school grounds. But wait, there is more before I even start at school.

Mum becomes much more seriously ill. 

At the end of Chapter Sixteen I wrote that Mum and Dad celebrated their 60th (Diamond) Wedding Anniversary with the family and a few friends but Mum’s health had been declining for more than a year. Dad says over 2 years. He of course, noticed far more than we did. Mum made it, with Dad’s help to celebrate Christmas 2006 at my brother’s and we all joined them. That was probably the last time we did have Mum with us all. Early January 2007 after an incident where Mum had a ‘bump’ into a door and hurt her head, Dad was reluctant to let us know as we had taken a few days to have a break on the south coast. His birthday was celebrated very simply with my daughter, some of her kids and my niece, joining my parents for a simple morning tea. The last photo of Mum is at that small event. It would have been important for Mum to have a cake for him. She did not make this cake though as had been her tradition.

We returned from our holiday and I was surprised to be asked to help Dad out, because they lived an hour from us and I wondered why. I guess, he had downplayed Mum’s condition for “protective measures” and also because Mum was exceedingly private about anything medical. Oh, and worrier to the nth degree. I drove to their place, as requested, on a very warm mid -January afternoon to be the chauffeur to take Dad and Mum to a much needed catch up appointment with her specialist Neurologist. Back story: Mum had, for some time, exhibited symptoms which could have been Parkinson-based or maybe not. This man was a kindly person and whilst Mum found it hard to hear (deaf most of her adult life) he tried to ease her anguish. I did not go into this appointment with them but when Mum came out, I assisted her to the ladies and for the first time, saw her need to guided help as she walked. A wake-up call for me.

I drove Mum and Dad home. The specialist was going to organise for Mum to have an MRI (I think) within the next weeks. Time did not allow for that to occur on his watch, as that weekend, Mum became confused somewhat by pain and Dad made the call to take her to the ED at the local hospital. She was seen by a couple of people that Sunday and Dad tried to let them know what the history was, but with a couple of tests and a CT (I think) they said “take her home.”

Dad was appalled but did as they said. The next day, Monday, he was onto the specialist Neurologist immediately who was sorry he had not given Dad his mobile number but said, I will arrange for her to be admitted to the private hospital now. But then, Dad took another call, from the local public hospital. “Oh, could you bring your wife in please, we have seen tumours in her brain”. Umm. No thank you.

Meanwhile, I started a new adult teaching role.

Gosh, way to add complications to my life. However, I needed an income and found work on a day when I was not going to be in a school, at Chatswood helping older people learn English to function. I admit, it did last for only 10 weeks but it was not a role I loved. More later. The one thing that was a bit convenient on one of the days, was that after teaching, I was close to the hospital where Mum was.

Term One. School, Adult Education and a New Vehicle.

Before returning to teaching at the end of January 2007, I sold my sedan and became the proud owner of a Grandma-suitable vehicle called an Avensis. It could seat seven and even though we had only 3 grandchildren then, I felt this vehicle was more appropriate for my travels to school as well as across Sydney. I did not, dear reader, anticipate the number of grandchildren would change. This news…later.

I kind of settled into the new (to me) primary school where I was a part-time E.S.L. teacher for 3 days a week. I found it a hard role in some ways as at my previous school I was able to make it my own but, ever resourceful, I was able to find I could contribute to this school’s teaching and made some kind friends. It was though, at the back of my mind all through February that Mum was seriously ill. Not quite fully cognisant of what would lie ahead, I did make meals for Dad and did what I could on my days off to help. The role at the adult education college was not my ‘cup of tea’ because of the lack of relationship I was able to foster with the ‘students’. They all turned up with electronic dictionaries and really paid no heed to my teaching much at all. I will admit I sighed with relief when I said I was not able to return. Schools (and Uni teaching) were much more my style.

Knowing Mum Was Going To Die Soon.

By late January 2007, the decision NOT to operate on Mum’s secondary brain tumours (primary cancer never determined) was made by Mum. After the diagnostic MRI showed the reasons for her loss of sight and more, it was Mum who said “no more”. Dad asked us kids (my brother and me) and of course we agreed. So did her then team. What next? It was a confusing and not great time for us, mostly Mum.

  • She was allowed home with no support added at this stage, just Dad. My sister-in-law got in touch with some home care people and that was arranged for the next week
  • Mum became almost mute. We will never know how much she understood about her condition. Dad has told me since that “she was just not the woman I knew for the 2 years before this”. Of course, we have talked a lot about this and reckon it was a lot to do with Mum’s reticence along with her distaste of anything to do with hospitals.
  • Dad managed by himself initially and with a couple of aides who came to help Mum shower…and who Mum said ‘I don’t like this’ So that stopped.
  • I recall my s-i-l and I trying to wash Mum’s hair and dry it. Mum was soooo particular about her hair and in the previous months had no salon visits and would not allow her hairdresser to call in to help. We did not do a great job.
  • Mum needed attention through the night and Dad would help her to the toilet etc. This became very hard.
  • Dad had to really consider his own physical health and with some discussion with us (even though his mind was made up) and in consultation with Mum and Dad’s GP, it was time for Mum to go into a local private hospital for so-called palliative care.

It Seemed Very Sudden But It Seemed To Take Forever. 

Mum actually brought up the fact that Dad’s full-time care of her was very hard on him. I like that she was compassionate enough to see that. However, the next stage was very challenging. For them both. Even hearing about how it transpired still makes me both sad and a little mad. Dad too, as I now know.

The Regrets.

  • Dad and Mum’s GP was able to get Mum a bed at the local private hospital. Dad was reassured by that.
  • He sat with Mum on the lounge to explain what was going to happen on that same day. A Friday.
  • I am not sure who else was there. I know I heard about it after it happened.
  • An ambulance arrived for Mum’s transfer and that, my dear readers, was the last time she saw her home of 49 years. 1959-2007.
  • Dad had not realised, of course, that putting Mum in hospital prior to a weekend would mean no particular treatment or care would start till the Monday.
  • Mum was placed in a shared room. Her loss of hearing made that a huge challenge, along with her somewhat confused mind about “where and why”.

The Reality.

  • Dad did need this respite from care 24/7. There was no other option. Having said that, we have talked about it a lot. He would have waited till the Monday in hindsight.
  • We visited Mum around lunchtime Saturday and it was HOT. Her room, with a view of the harbour (at Manly) was nice but it was overpoweringly warm too. We lived an hour away. Dad lived within 15 minutes drive and my brother and family about 20 minutes away.
  • My husband offered to help Mum with the food that had been left for her. As he fed her, she said, heartbreakingly, “If I eat this, I will be allowed to go home.” Neither of us will forget that.
  • Mum who was a very private person found it awful to be sharing a room and I am pretty sure, told anyone in the family who visited.
  • We did try to organise visits to Mum was not burdened by too many even though she communicated very little.

Moved To a Better Room And Palliative Care Finally Happened.

  • Close to 3 weeks after Mum was admitted to this multi-purpose private hospital, Mum died peacefully late on a Monday night just before midnight. Dad was at home, and when he knew, he rang each of his kids.
  • But in the weeks in between Mum struggled. She spoke little. We knew she was in pain but it was unclear what would actually happen to help.
  • We know, some 13 years later, that advanced care plans are enacted and with the right medical people on side, comfort levels can be achieved.
  • It was only with some words from my sister-in-law, to those who were in charge, that she was given the amount of medication which should have happened much earlier. 
  • She was no longer on any kind of hydration nor offered nourishment.
  • However, hindsight is a thing. None of us wanted Mum to suffer needlessly.
  • Dad was with her every single day for part of the day. She was given care. Family visited on a planned basis.
  • I admit it became really, really hard to wait for the inevitable news, and with my husband present we sat beside Mum, talking softly and saying farewells along with handholding, and my husband saying the Lord’s Prayer….this was something my Dad asked him to do.
  • We did not return after that Friday visit.  I was very sad leaving her for the last time.
  • We waited at home and I began the inevitable task (lovingly sought) of writing up some words about her and making an order of service.

Life Goes On. In a Most Interesting and Unexpected Way. 

  • On the weekend before Mum died, our son and his partner told my father they were expecting a child. This was something completely unexpected by them as well as us.
  • We had been told too.
  • My son, particularly close to his grandmother, wanted to share the news with her. His grandfather, my dad, decided that it might be best left to him. Unsure why…but that IS my Dad.
  • Our son and his partner visited Mum too on that last  weekend of her life.
  • On hearing the news, my traditional mother reacted in a sweet and typically conservative way, asking if a wedding would also happen. Made me smile that did, that she could rally in that way!!

Gratitude for My Mum.

Whilst I would admit we were not close, as the years go by and I am ageing, I also find I am more like her than I realise.

Thank you Mum….

Love, Denyse.

 

Part Two: Next Wednesday. 

Joining Leanne and friends here on Thursdays for Lovin’ Life Linky.

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest

I Am Grateful Today. Cancer Surgery#1 Part One. 2017.91.

I Am Grateful Today. Cancer Surgery#1. Part One. 2017.91.

Hello again!
Today I am listing many reasons I am grateful and am delighted to be back blogging and linking up with dear friends here with Leanne for Lovin’ Life Linky!

Day Before Surgery

Oh, and in case you did not know… I have returned home after my major cancer surgery which removed the inside top of my mouth, gums and teeth (ha! there were only 3 left…and bummer…no tooth fairy coin left either!). When I was in hospital I had PLENTY of thinking and reflecting time so a post about gratitude seems to fit my return to Lovin’ Life today!

This post is live two weeks after my 11 hour surgery on Thursday 6 July. The selected  photos and words are just a part of my grateful list.

I am doing my best to have them sequentially …enjoy!

Wednesday 5 July. Pre-Admission Day.

It was a well-planned departure (I am so that anyway) but I did have a tiny sense of ‘what if I don’t come back’ and sensibly did quite the paperwork tidy-up, prepared official documents so husband and daughter knew where they were, and left my bedroom and art room clean and tidy. The trip to Sydney (by now I had done 3 since diagnosis) so I am grateful that I built up my confidence through challenging my beliefs based on fear of driving on the M1 and ‘getting caught short’.

We arrived in plenty of time at Chris O’Brien Lifehouse (pictured)  for a myriad of health checks (all fine and dandy!) at pre-admission and handed over my life in forms…about 10 pages. There was no money to pay as our Teachers Health covered every.single.item*. Always very grateful we were both in it as young teachers then continued as a family always with top cover. The amount paid by them was in excess of  $21K.*not all doctors’ fees but that is ok.

We had booked overnight accommodation (cheap and cheerful as recommended by the hospital) as it was within 10 mins walking distance of Lifehouse. We were not impressed by the spartan set up however kindly the people were who supplied the accommodation so after our LAST night together for a while, B decided to bunk in with the grandkids and our daughter who live an hour away from Lifehouse. In retrospect I was incredibly grateful he did because as he said ‘it was great to see loving family faces!’.

Thursday 6 July. Day of Surgery.

I have no pictures! Fancy that! But I was grateful for a laugh when I got my phone back from B the next day and there was over 3 hours video of the inside of the phone cover which must have started when I handed it to him in Surgical area at 6.30 a.m.

Friday 7 July – Sunday 9 July. Intensive Care Unit.

After 11 hours of surgery I remember one fact about waking in what possibly was recovery but might have been ICU and it was nighttime. I asked ‘no tracheostomy?’ Of course, my brain tells me now I would not have been able to ask the question if I had, but I was intensely grateful that my surgery did not require this as I had been told it was possible.

In intensive care I was grateful each room was private and I could shut out sounds and light as I mostly needed to rest my eyes, not sleep. I liked that I could talk (a bit) to whoever came to check my obs. Loads of obs checks, especially my ‘mouth flap’. This was checked via a doppler ( a mini ultra-sound scanner) and each time I heard the reassuring beats I did thumbs up as I was incredibly grateful it was alive in me. The catheter came out on the second day and it was good to go to the loo (with help of course, as my leg was in a back slab). I am grateful I stopped caring about modesty. Let’s just get better is my motto!

By Sunday I was stir-crazy and when I heard they were waiting for a room to be ready on the ward I sure was pleased. It took a bit of time to do the transfer but I was grateful to say ‘bye bye’ and ‘thank you’ to ICU.

The Rest of My Stay Until Discharge on Saturday 15 July.

To be continued next Tuesday week where I will link up on I Blog on Tuesdays and the next Thursday when I will link up here again too.

I decided to do it this way as I am tiring and I have a lot to say! Who knew? Ok. I did.

Denyse.

Next Monday I re-start my #lifethisweek Link Up: Here are the prompts: They are also on the Home Page.

Mon 24 July: 28/52. Can’t Live Without.

Mon 31 July: 29/52. Winter.

Mon 7 Aug: 30/52. Birth Order.

Mon 14 Aug: 31/52. Ideal Meal.

Mon 21 Aug: 32/52. Selfie Time.

Mon 28 Aug 33/52. Mindfulness.

Mon 4 Sept 34/52. First Car/Bike.

Mon 11 Sept 35/52. Beach or Bush.

Mon 18 Sept 36/52. Taking Stock.

 

 

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest