Tuesday 17th May 2022

Five Years Ago. My Oral Cancer. #HNC. Part 1. #LifesStories. 31/2022.

Five Years Ago. My Oral Cancer. #HNC. Part 1. #LifesStories. 31/2022.

Interestingly there are hardly any selfies or images of me from before the cancer diagnosis. In fact, until I knew I had cancer, I was taking photos of nature a lot…as I tried to make peace with my inner stress. In fact, this photo, which is not too great, was taken on the morning of what would be the day of diagnosis as I was trying to make a daily photo of autumn challenge…it did not last!

Those who have been following me and this blog for some time will recall that in May 2017 I found out I had a rare cancer in my upper gums and under the top lip. I am now referring to the cancer as oral cancer, even though it remains as part of the head and neck cancer family. The full story is here. 

I was always going to write about this time…5 years ago…and here it is in the lead up to that day in May!

The bit of history behind the story is that I had been troubled by issues relating to soreness and some swelling in this upper gums that no doctor, dentist or specialist dentist could  find a reason for…other than keep it cleaner, use this mouthwash, suck these lozenges…..

And being the obedient patient…I did. Until I could no longer keep wondering what WAS hiding under the bridge of teeth. 

2017 was the year of more stress for me…and it was compounded by the pain and appearance of extra skin over the top of the bridge. My dentist, AB, was finally convinced by me, and he agreed that the only way to find out was the extract the whole bridge and the teeth. On 6 April that occurred.

By 26 April some of my bravery returned because that was ONE big thing I had done at the dentist, and I got over my fear of driving (IBS related) on M1 and saw my Dad after 4 months. This photo is the relieved me with a still painful mouth (that temporary denture was not fun) on my way home.

The person who takes lots of selfies not did not back then. In fact, I tried as much as possible to distract myself from worsening pain, gums growing and a general horrible feeling in my mouth until…

I couldn’t be distracted any longer and AB was seeing me after he’d been on holidays. But first, a visit to the regular  GP on 10 May who, after going through a few other health matters with me as I was leaving her practice for the one closer to home, THREW her hands up to her face when I showed her my sore mouth and gums without the denture.

Nervous? You Bet. Why?

  • Then Doctor, CS, who raise her hands in horror on Wednesday 10 May  and go “What…” and immediately tries, without success, to reassure you… “get to the dentist tomorrow as planned…and here’s form for CT of your sinuses….”
  • Dentist, AB, with whom I have a great relationship and joke a bit, says, seriously,   on Thursday 11 May “You need a biopsy of this from S. I already know that S is the Oral Surgeon, literally 10 paces back down the path from the dentist.

“right”, I say, with lots of questions but I hesitate to ask them…from my diary notes that day….

“Mouth – gums – inflamed & pretty puzzling to him . Going ahead with tests ordered. By Dr C – X-ray & CT (looking for cancer) 😧He mentioned HPV – what warts come from.. low immune system – maybe as I’ve been so stressed. Need a biopsy/ great not!
He said sockets are healing ok but slowly. Will see him after biopsy – which I have to organise.. he spoke of future might have to go to Westmead & I’m resistant”

  • Oral Surgeon. I meet SC on that Thursday straight after seeing AB…and she is very friendly and says, let’s do this tomorrow morning. OK…I say, but inside already feeling the stress of the tests at the X ray and CT place that will be in the afternoon.

But I Needed To See my “now” G.P. who’d been seeing me just on a month to de-brief…. Still “is” my GP…

Got myself quite stressed to point of tears after trying to make sense of what could be wrong with my gums so decided to see OG to catch him up due to transition from CS to him & having been to dentist AB.
He said tests are way to go & biopsy
Also said do anything different – dentist was keen for me to try more ibobrufen but that affects my gut.
He looked in my mouth & said it doesn’t seem worse than last week
He wasn’t convinced re HPV.
Couldn’t rule out cancer but getting tests essential & biopsy.
Once biopsy done & results in – consult with him & dentist.
He was kindly but couldn’t do much more do reassure other than I’m taking all steps he would suggest
Pretty stressed with it & so over it…

The thing is I had been putting up with much of this for 5 weeks after extraction and for months before that when no-one could give me answers.

 

Friday 12 May. How I Managed

….thanks to encouraging husband, who had to do his volunteer work for cancer council that day, my exposure therapy techniques, 1/4 valium, Immodium and sheer courage.

  • drove myself to Ourimbah (about 20-25 minutes from home) and arrived at Oral Surgery to be welcomed kindly by SC and her nurse.
  • straight into the chair. We spoke briefly. I knew there would be a numbing injection, then the biopsy (and I had one 2 years earlier).
  • once numbed up, SC did her work and then applied dissolving stitches and I was given kind care and told the results would be seen to as an urgent one…and I would hear from her on the Monday.
  • mouth was painful but at least something was being done. Some time at home, and tears too from the sheer weight of the emotional strain and then:
  • drove myself for the CT and Xrays. These were looking for cancer in the sinuses and jaw.
  • home….evening…tired out.

Sunday 14 May: Mother’s Day 2017.

Our daughter and three granddaughters came for lunch. I put on a kind of act I guess but in the photos taken that day, I see the strain in my face. As the family was leaving I just shared with my daughter that I was waiting on test results for my mouth the next day.

Monday 15 May.

I got the blog link up sorted, and live and my post had published. We kept to our housecleaning routine…although my eyes were on the clock and when I could ring the CT/Xray place. I did and was told all good. Come and collect them. Big relief: part one. Part two occurred later that day when SC, the oral surgeon rang to discuss the preliminary findings.

I remember thinking “OK, good but what about these horrid, growing gums”. She replied that over time she could help with cutting them back. And I accepted that for then, and because only our daughter and my dad knew I had the tests, rang them with the good news.

Tuesday 16 May.

A normal day in our version of retirement. My mouth was still sore but I felt relieved. I took some photos of the flowers in the back garden. I would have been getting back to my blog post and to those who linked up. Here is that post…just for the relevance…I did not return to writing Telling My Story for another YEAR! And here’s what happened next

 

Wednesday 17 May 2017.

B went to counselling at Lifeline. I was relaxing in my chair, just finishing breakfast when I got this call from the Oral Surgeon SC, who was working in a hospital at Wagga that day. SC spoke calmly and kindly, telling me that last night she received further results and she was sorry to tell me there was squamous cell carcinoma found in the gums. My initial reaction was surprise but not shock as something HAD to be found I guess. The time was 9.25.

And after a little weep, I was able to speak to lifeline, B came home and in the meantime my organisational self shifted into gear. SC had sorted a referral for a “Dr Clark” at Chris O’Brien Lifehouse. I rang his secretary and she said “His associate can see you tomorrow afternoon”. By this time, B was home and after a long hug, we agreed sooner the better…and took up that appointment.

I rang both my dentist AB and old GP CS to share the news. They were very kind and whilst they were sorry about it, there was a sense we were on our way to getting fixed/better….

My head continued to buzz big time and I wanted to share this HUGE news with my now GP, so we had a very helpful late afternoon appointment where his reassurances of me managing the trip would be OK…with the suggested immodium and valium…and B agreeing to stop at any toilet I may need…

Photo of my art:

And that is how I found out I had this cancer. I had no idea of why (there has never been a reason) but I learned over time, not to be concerned about that, just know you have this and that there are people with awesome skills who would  help me over the next two years in particular.

From my appointment on Thursday 18th May:

This is what they saw in my mouth:

This is where B led me to, for a brief minute’s respite to gain some composure after being given the news of what lay ahead for surgery. Window from level 2, Chris O’Brien Lifehouse, where clinic rooms are. This is looking at St Andrew’s College in Sydney University Grounds.

And this is what I signed….after having ensured I understood it all, as the Ass/Prof AE was concerned I might have been too upset. No, I said, I understand. It’s just been overwhelming….B had great confidence in the men he met…and still retains the same respect for them.

Some info: This surgery would not happen for another 7 weeks. I will write about that in July. But here is some information from my 2 and a half hour consultation.

Maxillectomy: we are going to take all of the upper part of your mouth inside. The jaw, the gums and remaining teeth and, oh yes, the palate or upper part of your mouth…

LEFT (in the end it was RIGHT, because CT found blood supply to be superior there, to lift the flesh with blood vessels…& skin grafts and dental implants…

(and funny story, it was ME sharing with them IN THE ANAESTHETIC bay some 7 weeks later, that the permissions were for left leg but they were using right…details me hey! Anyway, I was happy to comply with the written changes ON THE MORNING…waiting for THE SURGERY…and signed away)!

And the fibula was removed to form the jaw: all to happen in theatre and skin & flesh from leg would re-construct me an INSIDE of MY MOUTH….

Sneak Peak: I did not get to see how this looked until October after the first surgery! It blew my mind!

Image via CT..top is my upper jaw and 3 sections of bone from my fibula with 5 implants

Thank you for reading this far…if you did…and I will return with some 5 year updates that have meaning for my life now, in recovery and someone who has had cancer. I tend not to use the survivor or any warrior type words.

Denyse.

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Being Me & The Month That Was April 2022. #WOTY. 28/2022.

Being Me & The Month That Was April 2022. #WOTY. 28/2022.

Word Of the Year Link Up Party.

Joining in with these kind bloggers:

hosted by friends Deb, Sue,  Donna and  Jo too.

You too can join in, clicking on one the above links:

Look for this image, and add your post.

 

April 2022: Being Me & The Month That Was. 

April started for ‘being me’  with less self confidence and some inner conflict.

I have been at odds with my perceived appearance (once a woman with overeating and overweight issues) that I could not shake. I needed evidence. Fortunately for me, and my current images, I now know my mind has been telling me stories. Who knew*? *sarcastic font.

And that was one of the reasons, lack of some self confidence,  I chose to make myself (and anyone who wanted to join in) a 30 Day Challenge via social media. Instagram specifically.

Being Self-Compassionate!

Dear Readers, I stopped the challenge at Day 20. I was getting little to no  engagement via my daily posts. And whilst I was wanting some likes and perhaps a comment, nothing happened. I like to engage with those who comment. So, I was a bit sorry that it did not happen. I was also taking part in a daily challenge from Fat Mum Slim about food, and using it to share knowledge and experiences from my head and neck cancer. And I stopped it at Day 20 as well.

 

Lesson learned: Perhaps I post too much and perhaps with an expectation of interest in what I post. But I can see, that having a private account, along with content that my on-line followers have seen enough of since 2017.

I am unlinking instagram from the blog as it truly was a nuisance with its updates. I am now just posting on Instagram when I have something I want to share. I have also unlinked Instagram from the Denyse Whelan Blogs facebook page. AND, in case you are not aware, I have deleted as many photos as I wanted to because Meta (owner of both FB and IG) own the images until you delete them. It takes a while to do it. But I didn’t want as much on line.

On Changing & Ageing…Being Me.

It’s all very well for people to say, “oh age is just an attitude”…and yes to an extent that is true but to deny the fact that we humans age in many ways (all different for each of us) but towards the common denominator called death, is for me and my husband, a non-realistic way to LIVE in the NOW, but keeping an EYE on our future.

What We Both Love About This Time Of Our Lives Is:

  • being together for parts of the day, week and so on
  • having some separate and private times
  • pursuing our differing interests and hobbies
  • coming together a few times each day, and at 9 p.m. to chat, laugh and listen
  • no one to answer to any more…no bosses!
  • lack of direct  responsibility for any other humans…those dear kids are in their 40s & 50s with our fast growing up grandkids as their responsibility
  • where we live now
  • having a limited but sufficient income with which to live our now modest lives

We went to Norah Head Lighthouse on Good Friday.

What We Accept Is Coming…one day…who knows when?

Our different and chronic health issues may impede some of our planning.

Already we have accepted that for two different reasons, both physical changes within us, we cannot travel or have a night staying anywhere. We both have eating and digestive issues that are managed with ease at home, and whilst we can venture to a cafe for morning tea or visit our family for a meal, that is it now.

My husband has a severely comprised spine – surgeries have helped him stay upright – and pain is with him 24/7 so he is most comfortable at home with all the needs met here. And of course, my reconstructed mouth means eating away from home is in fact, too hard!

I tend to want to know, research and read…(and listen if it’s via Audible) and “he” has learned so much in his University Counselling Degree and working as a Counsellor that he listens to me and nods ….because, dear Reader, is he WISE!

Mind you, we both do still learn from each other and he is understanding of my need to know and with my father’s age at 98 I have seen so much about ageing as it happens to him..I want to understand more about what it not only IS but what I can accept…so, learning for life me, learns! Here’s a few ways:

And this is truly BEing ME!

BEing Me.

Has changed considerably this year.

For the better.

I have, finally, taken stock of what was causing me some anxiety and worry and stopped being an always happy to say YES person.

I now have worked out whose health matters most, mental and physical and that is mine.

I know not everyone can see why I might now have changed but I have had to change.

I was being stressed over small matters that grew into big ones and they were, generally about people-pleasing.

It’s something I am more aware of now and seek to take a pause before I respond to something that perhaps I may have said yes to in the past.

On some occasions I wear my family circles but every day I wear this, a small heart within a heart to remind me of inner and self love.

Now, back to April: The Month That Was.

And some more:

I have visited Dad more often as the weather has brightened and he is needing company. I also bring little treats and food.

He no longer wants me to take photos of him but when he went to my brother’s for Easter, this image was taken and I love it….will be taking a copy “blown up” so he can see it next week. This is his youngest great grandchild and there is 97 years and 4 months difference in their age!

And that, my friends is April…..Word of the Year progress noted….and on Sunday it is May!

May, for many, can bring memories of Mother’s Days…and mothering, and grand mothering too if you get to do that.

It’s the month in which my oral cancer was diagnosed and my life changed from that time onwards.

Yes, there will be a post (or two) in May about it….

Take care,

Denyse.

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

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

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

Some months and seasons make great memories.

Photos and stories shared.

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

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

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

Onto 2019, 2020 2021 for more stories…..

And finally, this Autumnal April 2022. 

April and Autumn.

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

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

 

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

 

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

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

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

2015. Centenary of Australia & New Zealand at Gallipoli.

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

April 2017.

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

 

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

 

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

April 2018. Moving House.

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

April 2019.

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

April 2020. Covid Is Here.

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

April 2021.

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

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

April 2022.

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

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

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

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

 

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

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

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

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

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

 

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

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

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

Denyse.

Denyse Whelan Blogs Is a Community

You can link up something old or new, just come on in.

* Please add just ONE post… NOT a link-up series of posts, thank you.

* Please do stay to comment on my post as I always reply and it’s a kind thing to do!

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*You are welcome to add my link up’s image to your sidebar or let others know somewhere you are linking up to this blog’s Life This Month

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Denyse Whelan.

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My First “What’s on My Bookshelf?” Post. 26/2022.

My First “What’s on My Bookshelf?” Post. 26/2022.

I’ve been seeing post from various blogging friends for some time now, for this link up “What’s On Your Bookshelf?” and for a few reasons I have not joined in. Those reasons included “time” and “energy to blog” because I have slowed down my blogging pace and output, and the fact that I got caught up in the myth (mine) that listening to books was not part of this challenge. IT IS…and so here I am.

Thanks to Jo, Deb, Sue and Donna who host this.

What Am I Reading/Listening To Lately?

What a shock. Denyse Reads Fiction.

The good news is I am reading actual books…which for some time I just could not. The Mother by Jane Caro got me going and kept me going and now, I have been fiction  (yes, fiction!) book browsing. Its theme, whilst modern and topical,  is a very dark one. About men, coercive control and psychological bullying/harrasment/threats. I can’t write much more without giving too much away. It started slowly and built up in content and with details I found of interest as they were places known to me…and then, it got into the main reason for its content. Hearing Jane speak about it and how she came about the characters and so on, was very interesting too.

From Audible. So yes I can listen to fiction too.

It started slowly for me but I have become engrossed in it…and found it’s coming out on Apple as a series: Pachinko is the second novel by Harlem-based author and journalist Min Jin Lee. Published in 2017, Pachinko is an epic historical fiction novel following a Korean family that immigrates to Japan. I believe Barack Obama is a fan of this work. I have not yet finished yesterday.  Very long but keeping me interested.

I Read To Learn & Understand More About Me…and Others. 

In between times, on Audible, I am listening to this: The Body Keeps The Score by Bessel van der Kolk, M.D. Everyone who has lived needs to know more about how their life has affected them…truly great research and very good in its sharing. It is for both professionals and “us”.

“Trauma is a fact of life. Veterans and their families deal with the painful aftermath of combat; one in five Americans has been molested; one in four grew up with alcoholics; one in three couples have engaged in physical violence. Such experiences inevitably leave traces on minds, emotions, and even on biology. Sadly, trauma sufferers frequently pass on their stress to their partners and children.”

Another very very long one, and we also bought the book. Much head-nodding in some places and understanding so much more about effects of trauma. It’s not a very recent publication but it is incredibly relevant and many who work in the field call it one of the ‘musts’. Finished now too. Excellent.  Did you know “trauma” affects more people in the U.S.A. annually than death by shooting  and car accidents. Fact at time of author’s writing.

 

Interestingly, this next book could have had many examples of post war trauma examples but “back then” men (and women maybe) were not encouraged to share or to admit to the fears of the fighting and the outcomes. In our family, I have an uncle who went missing AWOL. And he did time in a military prison ….’for not wanting to be part of the war effort’.

 

I’m listening to Peter Fitzsimon’s massive tome Kokoda …Peter does not know how to write short books..mind you he can do a weekly column…A few years back B and I went to a local talk by Peter, who grew up on the Central Coast and he is the ultimate story teller. Very amusing. Lots of competition at home for a word in, being married to Lisa Wilkinson and now their daughter Billie is an editor of an on-line news service.

I am doing this story in sections as I sit and do some art. I thought I knew about where Australians took part in the wars but was very sketchy about the New Guinea part of the war, despite having an uncle and father in law who served there. It is a very long listen and his researchers are hard workers. The personal stories are priceless and paint a picture of a long- ago Australia.

Time to consider these two books, and the ramifications in the lead up to A.N.Z.A.C. Day.

A.N.Z.A.C. Day 2021. I went at dawn to watch the sun rise.

Comfort Books.

Here’s a couple.

Pema Chodron’s Comfortable with Uncertainty. This small but incredibly wise and in some ways hard-to-understand tome, is wisdom learned, and shared…over and over and over again. Because we need to reflect. I first started reading these small chapters a night well over 5 years ago before my cancer diagnosis. I had confusion at times with the messages because they seemed so tough. I have, however, in the ensuing 5+ years learned so much more about acceptance and what is suffering…that now when I read or dip into a chapter, I far more likely to smile. And nod. It’s beside my bed.

Tara Brach is a favourite teacher of mine from the world of meditation and learning about ‘life’ as it is. She has an amazing way in which she shares her faults and failings (like us all) and then making it a teaching moment. Tara has, via her books and CDs and podcasts and now on Calm as a Meditation teacher, been a consistent and loving presence in my life. Her latest book here, Trusting the Gold is a dip in and out of one of comfort. Love it too.

The one on the bottom is new and not yet finished. If I do a second post for On My Bookshelf I will write about it there. Very interesting by Indira Naidoo it’s called The Space Between the Stars,  and in some ways has been likened Julia Baird’s Phosphoresence. I found Julia’s book overly challenging  to handle for me personally because of my thoughts I have about privilege…’nuff said..but the cancer part of her book hit home.

Loving a Book on Audible Means:

I buy the actual copy.

I also have to love the narrator’s voice.

I prefer the voice to be the author…as it works for the content.

In two cases I offer this: Trent Dalton is a great narrator of his recent publication Love Stories. However, his first fiction book, Boy Swallows Universe required a range of male voices and the actor who narrated it was, for me PERFECT. Then, massive disappointment for me with All Our Shimmering Skies. I found the content hard and some of it was overly lengthy but the narrator’s voice..female, spoiled it so much, I couldn’t wait for it to end.

Peter Fitzsimon’s book, narrated  by Lewis Fitz-Gerald is wonderful as he is an Aussie actor of a similar vintage to Peter.

I love Dr Kathryn Mannix’s books and may write more about them next time. However, the first one is only partially narrated by her and I didn’t realise fully until I read/listened to the next. Her personal warmth and experience added much more to the book’s topic and I love her for that.

I also listen to books again on Audible. I like that I have the ability to do that.

I also used to listen on my longer car trips to and from Sydney but now that most of my appointments are no longer needed, I play them in small episodes as I drive around locally, and at times, in bed.

So for my first post and linking up, I think I have done well!

Thank you to the bloggers who follow this link up too.

Denyse.

 

 

 

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