Tuesday 26th October 2021

Head & Neck Cancer: Eating & Drinking Challenges. 29/51 #LifeThisWeek. 88/2021.

Head & Neck Cancer: Eating & Drinking Challenges. 29/51 #LifeThisWeek. 88/2021.

 

July: World Head and Neck Cancer Day. 27.7.2021.

As it’s July, I am publishing more posts relating to Head and Neck Cancer as 27 July is World Head and Neck Cancer Day. It only started back in 2014 I think, with Michael Douglas the actor making the speech to open the world congress for all Head and Neck Professionals. Michael has had #hnc as it’s often abbreviated.

In my role as an Ambassador for Head and Neck Cancer Australia, I will share more on-line and links about it too.

Blog Disclaimer: see end of post.

Denyse:

Those of you who have followed me before and since I was diagnosed with a head and neck cancer, know that I continue to write and share about this awful cancer which affects more people than ever. And, for me, back in 2017 I was completely ignorant of its existence.

To inform, educate and to make aware is what I like to think is something I can contribute these days on-line.

I’ve been given a new book to help cancer patients and their carers to read and review. It’s by Dr Toni Lindsay, a qualified Clinical and Health Psychologist who works in Oncology at Chris O’Brien Lifehouse. This quote resonated with me, as I am guessing it would with the other people I have mentioned in this post:

Eating is one of our most social activities and often forms much of our connection and engagement with our family and friends. Feeling you are not able to engage in this way can be overwhelming and isolating. So if you are likely to be unable to eat for extended periods of time *it is perhaps worth thinking of ways in which you can continue in social activities that don’t involved food. 

*We understand this, of course, as part of our recovery but, we are also able to eat again and yet, it remains a challenge. Please read on! Thank you.

This is why I am sharing about the challenges of eating and drinking after head and neck cancer with a lot of help from my friends, and Head and Neck Cancer Australia.

This is one place you could find information:

https://www.headandneckcancer.org.au/health-and-wellbeing/diet-and-nutrition/nutrition-videos

This image from the day of filming at Chris O’Brien Lifehouse.

Here is my blog post about that day, the ways in which I have had to adapt my eating and drinking and more.

And those of you who know me in real life, know that I can socialise but it’s helpful for me to have a coffee and something sweet to eat so I tend to choose going to a late morning tea with friends and family and they may have lunch. I cannot eat a meal outside the house unless it’s with family and I can pick & choose. Sound fussy? Not really but practical.

You see my mouth can only hold so much food at a time, and chewing only has two small areas in my mouth, towards the front and food congregates there as I try to get it right for swallowing with ease and not choking.

It’s something that you cannot tell by looking at me, right? But it is like this and I now share more frankly as a result.

I also lose fluid at the side of my mouth unless I keep up with the paper towels/tissues. My upper lip was reconstructed and it does not seal any more. However, it is all pretty good, and the more I share, the less I am embarrassed I guess.

Maureen:

Like me, Maureen is often seen on social media with a coffee in front of her. It is NOT the same double shot as mine but one she truly enjoys and can have it with friends.

Maureen is  a Woman of Courage who told her story here.

She sent me these notes about her eating & drinking challenges.

What adaptations have you had to make to daily life and eating/drinking post head and neck cancer?

  1. My case is unusual and my eating is marred by dribbling so I have to have facecloths to my lips every time I consume anything.
  2. I’ve lost teeth and my marginal mandibular nerve.
  3. I have two boxes of cloths, one on each end of the sofa and I take at least 3 wherever I go.
  4. Believe me, tissues are not enough, even big fat hospital tissues. I
  5. have to do a machine wash every day.
  6. Never had any help with this as I guess there is nothing else you can do.

What advice would you give to others as they recover and are back ‘in the real world’ post HNC?

My advice as such is that it is good to meet up with other non-social eaters and have a coffee.

Coffee is manageable – in fact I often have two cups when I’m with “normals” who are eating. Maureen’s personal blog about Head and Neck Cancer is here. 

Maureen is one of the leaders of this amazing Head and Neck Cancer Facebook Group and she is also the person who blogs about head and neck cancer here and has been instrumental with other people connected with head and neck charity in New Zealand, starting this way of helping others. Head and Neck Cancer Aotearoa Charitable Trust. https://hncsa.org.nz/

IF a family member or someone you know does have a diagnosis of a head and neck cancer or that person is a carer, the value of a good facebook group cannot be over-done.

The friendly space that IS this group for eligible people to request membership is a good one. https://www.facebook.com/groups/HNCSupport.Aotearoa

There are people from all over the world but the group is not huge so personal connections can be made. It is mainly made up of New Zealanders, and Aussies too…along with those from the U.S. There are questions to be answered to join and it IS strictly for those with a head and neck cancer. Link is here.

 

Yvonne:

Readers here have met Yvonne via her post as a Woman of Courage here. 

Yvonne has appeared in an on-line Soup for The Soul event for Head and Neck Cancer Australia last year when we were prevented from doing anything ‘live’ because of COVID. Yvonne’s cancer has changed so much about her life, and the link here, to her newly published book tells more.
1.What adaptations have you had to make to daily life and eating/drinking post head and neck cancer?
  • Meals and what they consist of have completely changed for me.
  • I note now I eat a lot more vegetable and pulses.
  • I do add fruit to my smoothies but sadly just biting into fruit and eating it is out of my range unless it’s mango, lychee or something of that consistency.
  • Drinking alcohol is now pretty much non existent and I was quite the drinker in that I was a party girl and loved nothing more than to sit with friends over a bottle of sparkling or 3 !

So that has also changed for me. It has had a bigger impact too I think because pretty much COVID hit when I was convalescing and of course I had already quit my job and moved countries.

Picking at food and tasting whilst cooking is non existent too these days, I miss just jamming my finger in my mouth to taste stuff, my taste buds thankfully have come back but I still surprise myself with flavour layering occasionally and find sharp and sudden flavours ( acid and sour) sometime confrontational.
What advice would you give to others as they recover and are back ‘in the real world’ post HNC?
I am also very keen to see more support around the emotional and psychological fallout of HNC treatment, I think this has a huge impact as does food in terms of how people come out the other side.

Do my program!  : )  Mind Food Body Program as part of the nofeedingtubes movement.

Yvonne introduced me to this word. Yes, I understand this well. Thank you.

Commensality – eating and drinking at the same table – is a fundamental social activity, which creates and cements relationships. It also sets boundaries, including or excluding people according to a set of criteria defined by the society.

 

Marty:

Marty is a fellow Ambassador for Head and Neck Cancer Australia. He and I chatted recently about the challenges of eating post head and neck cancer.

We met back in September 2018 and I was so excited to not only meet up but to share a photo as I had only just had my “teeth” installed.

Interestingly some of his responses were ones I have heard before from members of the Central Coast Head and Neck Cancer Support Group.

Marty is more than 17 years post his cancer treatments. Radiation was one.

Marty spoke of limitations of eating rice, fried rice and spicy foods.

Food that were previously enjoyed. It seems taste and texture remains an issue.

And often because of the loss of salivary glands or damage, swallowing becomes hard.

So like others I asked, Marty finds he has to adapt his eating practices often making sure there is a liquid element to the meal such as soup – this is why the fundraiser for head and neck cancer focusses on soup – and to have a drink of water nearby.

Most of us carry out own small bottles of water.

For some of us, it’s a lack of saliva and we need to replenish our mouths to be able to talk. For others it’s about making sure some lingering food crumbs and pieces can go down.

This group photo of some member of the Central Coast Head and Neck Support group at Christmas time 2020 tells an unwritten story.

 

At this table there are 7 head and neck cancer ‘survivors’.

  • Each of us has had different treatments and each of us has been left with eating (and sometimes drinking) challenges when we go out.
  • There were some here who had to have lots of gravy (as an extra) added to their meals, others asked for their meal to be “blended”…oh that is not something some places like to do.
  • Seriously hard on the person who could have enjoyed the baked dinner that way.
  • Instead, from memory the meal became mashed potato and gravy.
  • Others had to make sure there was nothing spicy or with chillis.
  • And as for me, you already know, I chose what I knew I could eat from a mouth concern and how much my stomach could handle.
  • I enjoyed coffee and some date loaf. I have learned not to be embarrassed because the social part of the get together was for me, the important part.

And More From Denyse.

I cannot use a straw any more. My mouth does not seal.

I can have a Christmas lunch. It just needs to be adapted by me.

Here is what I ate on Christmas Day 2020 at home. We were in a covid concerning time and chose not to go to Sydney. So, I made up for my disappointment this way.

Soup for The Soul.

Sadly, due to on-going Covid19 restrictions and closures in our area of New South Wales, this event will not proceed as hoped on World Head and Neck Cancer Day. We “are” however, hopeful of having it at another time. 

Tracey and Me: Soup For the Soul.

Tammy.

In keeping with my own learning about the effects of head and neck cancer, I am adding a paragraph, written by a woman who is both carer and wife in a long term marriage and as things go, can never again have the pleasure of the simplest thing: eating a meal with her husband who has had devastating head and neck cancers taking away his ability to talk – he can communicate via Ipad, but his wife can no longer remember how he sounded…but it’s this, as she gave me permission to share, that I feel needs to be thought about and taken into consideration:

I also think of those who never eat again. For many of this group, communication/talking is not an option either. I know its a very small/rare group , but it’s one dear to me. Socialising involves talking, eating and drinking with others . Its what makes us Human Beings. For a small group of H&Ners, none of this is possible.

Thank you Tammy. I am grateful for your words.

Denyse.

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. Words from others are accordingly from their personal experience and not to be taken as nutritional/dietary/medical advice. Seek what you might need from qualified health professional  who understand the needs of cancer patients.  Denyse Whelan. 2021.

Link Up #249

Life This Week. Link Up #249

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* 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. It’s a kind connection I value as a blogger! 

* Check out what others are up to: Leave a comment on a few posts, because we all love our comments, right!

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Water Is All Around Us Here. #SundayStills. 54/2021.

Water Is All Around Us Here. #SundayStills. 54/2021.

About Sunday Stills:

Terri here has now  moved into her new abode and her friend from Always Write  was caring for Sunday Stills while she did so. I will share this post soon too.

May is here and if you too want to follow the prompts here they are for May 2021.

May 2    Water
May  9 Weather
May 16  Monthly Colour Challenge: Grey
May 23  Favourite Vacation Spot
May 30  NO CHALLENGE

For our planned move from the landlocked space of North Western Sydney back in 2014 we both knew we wanted more space around us, nature and W A T E R.

My husband and I both had childhood and teen years by the waters of towns and cities of N.S.W. but we could not afford to buy anywhere near those areas when we returned to the city after teaching in the country.

We always holidayed annually near the beach, and it was to this area we have retired. Still not purchased a house but we are renting where we feel like we belong for now.

Water IS All Around Us.

The Wyong River.

We live on land which  belongs to the local Darkinjung people who are the original inhabitants of this land. European settlers also farmed this land and it was only a short while ago (less than 10 years) that where we live was a place for dairy cows. The Wyong River’s source is in the hills we see in the distance from near where we live and it meanders in gentle times, and floods in times of big rains. I visit the river at different locations. One is at Tacoma as it readies itself to join Tuggerah Lakes, which then flows to the sea. Another is what I call Porter’s Creek which is where I often go to contemplate and appreciate nature and just up from there is the place, of the original Wyong Milk Factory,  where the fresh water from the river meets the brackish water of the lakes.

Tuggerah Lakes. A Huge Inland Water System.

I see the lakes at various places near us: Toukley, Gorokan, Budgewoi, Tuggerawong, Wyongah, North Entrance and The Entrance.

And undoubtedly my favourite. The Pacific Ocean.

Also known by Tasman Sea – our nearest neighbour to the east is New Zealand. Each beach along the East Coast of Australia has unique qualities and often different coloured texture and types of sand. I sometimes walk on Lakes Beach, and down to Soldier’s Beach. These are places I see the surf and the waves. I also visit the rock platforms close to shore. So much water. So much to enjoy. And I do!

What is the water like where you live?

Denyse.

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Explore. 8/51. #LifeThisWeek. 24/2021.

Explore. 8/51. #LifeThisWeek. 24/2021.

Let’s go and explore my local area.

Here’s a map of sorts:

From our place in Hamlyn Terrace, I go east to Lakes Beach Budgewoi about 20 minutes away. On a Sunday usually I go into Wyong, and out to Porter’s Creek. And in early February I drove south to Sydney to Northern Beaches.

 

This is something I do regularly each week. Drive solo to explore local areas. Often listening to an audio book.

Into my red car we go!

So, here’s a few snaps from earlier in the month.

Wyong: Sunday mornings.

Drive to Sydney to see Dad is followed by a drive to local beaches.

View from North Curl Curl looking south to South Curl where I usually stop for photos!

 

Applying some zoom, Manly is in the background. Freshwater area in the foreground.

Local drive to the Beach. Lakes Beach this time not Soldier’s Beach.

Very windy on my approach. Rough surf too.

Really wanted to walk along the water’s edge and in the water too….

these stopped me. There has been a huge influx of blue bottles up & down the coast. They STING like crazy.

What are your favourite places to explore?

Denyse.

Link Up #228

 

Life This Week. Link Up #228

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: 9/51 Taking Stock. I will be using my new prompts:

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I Saw. 22/51. #LifeThisWeek. 44/2020.

I Saw. 22/51. #LifeThisWeek. 44/2020.

I was very wordy last week, so this week, as fewer words as possible as I describe ‘what I saw’.

Those of you who follow me on other social media may see a repeat or three…but here are some photos of what I saw: from late May as I compiled this  post.

Photo prepping for Beyond Five’s Soup for The Soul.

 

Wamberal lagoon, coffee in the car. Rain about.

 

Choc Chips and Flaked Almonds in a Biscuit. Local GPs Office & Dr LOVED them

 

Patterns: my neocolour crayons getting in practice before #ICAD2020

 

I can not resist a lonely flower which is perfect.

 

Slowing my mind to concentrate on “one thing as a time”. A 4000+ Group I am in, used this image for its banner for a few days.

 

Celebrating LOVE of coffee in a glass and sitting to enjoy it.

 

Glassy and still lake in the afternoon.

 

Large mindfulness drawing and colouring.

 

Looking west: The Entrance Bridge.

 

New (and expensive) coloured pencils.

 

Clouds and sky and reflections on water. Love this.

 

And the next day: flying seagulls over waves on the lake.

 

Haircut (tick) new cheap readers on (tick) admitting I need these (tick) Not for driving though!

 

Delicate & beautiful pansy I am growing. After rain.

 

Where does the seagull start and end?

 

On the last day of remote learning: I made this.

 

Windy and cold…at Soldiers Beach to view the sea.

 

 

That’s a sample of what I saw!
I hope you enjoyed the snapshots via my eyes!

Next week, Debbie from here and I will be writing our second posts in our 2-part series on being Grandmothers in Life Stories. My first one is here.

Take care everyone,

Denyse.

Link Up #191.

Life This Week. Link Up #191.

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 weekly optional prompt is: 23/51 Life Stories 2.  8.6.2020. (changed prompt: do choose your own if it does not suit this week)

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Share Your Snaps 3. 15/51. #LifeThisWeek. 38/2019.

Share Your Snaps 3. 15/51. #LifeThisWeek. 38/2019.

Manly: New South Wales. Australia.

When we moved to live in Sydney in 1959, we were pleased, in retrospect, that Mum and Dad chose to live on the Northern Beaches where Manly was the nearest beach, shopping centre, and starting place for the Manly Ferry to take us to the city. However, this “is” meant to be a sharing the snaps post, so here are many of mine….and I hope you enjoy the selection.

The family home. Not looking like this any more

Manly lies on the land of the Guringai people, the traditional owners of the land. It was given its name by Captain Arthur Phillip in 1788 when he travelled north of Botany Bay after finding it ‘unsuitable for settlement’.

He initially named the area to the north of the harbor Manly Cove after spotting a group of Aborigines in the area, about who he stated, “their confidence and manly behaviour made me give the name of Manly Cove to this place”.

The men he encountered were from the Kay-ye-my clan – of the Guringai people. As he scouted for fresh water in the area, Phillip met members of this clan and, following a misunderstanding, he was speared in the shoulder. He ordered his men not to retaliate preventing further bloodshed.

People gradually began settling in the Manly area around 1820 and by the 1850s Henry Gilbert Smith, the founder and developer of Manly, had the vision of Manly as a seaside resort.

https://www.coveredsummer.com.au/history-of-manly

This information is of interest in terms of Manly’s place in the white settlement of Australia. Always remembering the Aboriginal people who own this land.

Some smaller versions of these pavilions remain at the South Steyne end of Manly Beach.

 

One of the ferries on its way back from Manly

There was a ditty a long time ago, “7 miles from Sydney and 100 1000 miles from Care” or words to that effect, about a ferry trip to Manly!

Manly itself is a suburb of Sydney and the beach’s long stretch is made up of South Steyne – southern end and on the walkway to Shelly Beach and Fairy Bower, North Steyne is in the middle (where I used to go as a teen) and Queenscliff is at the northern end and where a certain ex Australian prime minister appears in his budgie smugglers far too often for my liking!!

Recently I re-visited Manly itself after being to see my 95 year old Dad in his unit at Dee Why. When I went the next time to Dad’s I showed him the photos and he lingered over them. He told me “in retirement, any morning I was not at golf, I’d come down here. Walk in the surf and the sand from South Steyne to Queenscliff and back. Some days it would be around to Fairy Bower”. I know he would always finish with a coffee!

I will always have a place for Manly in my heart. I now know, of course, how fortunate I was to live near here aged 10 to 20. We had access to it all as day visitors and holiday makers staying at my parents’ house as did our children. Many great memories of Manly.

 

Have you been to Manly?

I loved sharing these snaps here this week.

Denyse.

Linking here on Mondays with Kell for Mummy Mondays.

You can link up something old or new, just come on in. * Please add just ONE post each week! * 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 by leaving a comment because we all love our comments, right! * Add a link back to this blog in your post somewhere. I don’t have a ‘button’ so a link in text is fine! *Posts deemed by me, the owner of the blog and the link-up, to be unsuitable for my audience will be deleted without notice. * THANK you for linking up today!

Next week’s optional prompt: 16/51 Easter Time Means This. 22/4/19.

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