Sunday 26th June 2022

Telling My Story. Ch 26. Final. Sept-Dec 2021. 6/51 #LifeThisWeek.  8/2022.

Telling My Story. Ch 26. Final. Sept-Dec 2021. 6/51 #LifeThisWeek.  8/2022.

Telling My Story. Image #8.

The backstory first:

Nearly FIVE 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 Six. Telling the story, Sept-December 2021 for the final time.

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 photo in March 2021…taken overlooking the harbour at Dobroyd near where I grew up close to Manly N.S.W.

September 2021.

Introducing September 2021. It was the third month of lockdown for us here on N.S.W. Central Coast which was part of Greater Sydney and restrictions. No hairdressers, no shops open for browsing, keep close to home, exercise away from home within Local Govt Area is Ok….and for me, the telehealth annual cancer check.

This image here sums up my desire to ‘keep it real’ for my appearance as well as to record the various places I visited. I got great news from my head and neck cancer team, via the phone, and that is unless anything changes for me, my NEXT visit in September 2022 will be my LAST visit. I am still recovering from that news! “I will miss you” I said to them. Apparently that is very normal!

The remainder of the images that form memories as part of Telling My Story, will have information under them.

To keep us as safe as possible, during this particular lockdown we approached going outside/away from the house, following the rules.

  • Only one of us went out for whatever that purpose was (shopping, doctor, exercise) once a day.
  • And we deliberately limited our exposure to potential Covid by only visiting two local stand-alone supermarkets.
  • We (I) missed some chances to shop for crafty items and gifts to send in care packages (we did this twice in September) and for that I visited a Reject Shop.

 

Instagram has been problematic for me since I moved to a new Iphone. And this year, I went from two accounts to one. Made it easier to keep track too.

On this day, I stopped the car and took photo after photo of Flannel Flowers.

October 2021.

Oh my goodness, it was getting  closer and closer to “opening up” again here in our part of N.S.W. and in Greater Sydney.

  • We still could only travel inside the local government area of Central Coast.
  • However it goes from the M1 at around Mt White in the south  to Lake Munmorah in north and across to the coast at many places.
  • Even so we decided to stay close to our ‘local area’ comprising of Wyong, Norah Head, Hamlyn Terrace and Toukley…until I had enough and did a couple of solo road trips south to where we used to live.
  • To pick up some items, and to have a look around again at where we lived from January-November 2015.

On 11th October 2021, we were free again to drive to Sydney. However, my Dad suggested I come a couple of days later. My husband was fortunate to get his HAIR CUT this week, and I still had a rather agonising two more weeks’ wait as my salon needed to have all working there to be double vaxxed.

I enjoyed that experience in late October, and could actually show my face with pride when we visited our son’s family. I was too embarrassed by my LONG (for me) locks when our daughter and her youngest visited pre-hair cut. No photos….

So, here are my memories.

Head and Neck Cancer is never far from my mind…even though I am well.

  • I assisted in the promotion of the submission by Head and Neck Cancer Australia to all Federal M.P.s by sending my story with head and neck cancer (page is here) too. I heard back from several, and some invited me to meetings, along with CEO Nadia Rosin.
  • Unfortunately I was unwell for one face to face meeting but did get to the Zoom meeting with one M.P.
  • It is hoped that we will be invited to Canberra (after 3 postponements due to Covid in 2021) to share more in 2o22.
  • I will not be attending. See *further in post
  • However, there will most likely be a federal election too…so we will await not only that outcome but to see how the future government might be in terms of financial assistance to this Australian head and neck cancer charity.

And by the end of October, the best thing happened. We got to drive to outer Sydney to see our son and his four kids on the acres where he lives.

 

H is 14, we cared for him from 4 months a few days week till school, R is now 12, off to HS and we cared for her for a similar time. E, is 8 and we cared for her for one year & Miss M, we got to know her from visits to us. LOVE these kids

November 2021.

We are now into my birthday month…but I seriously only celebrate on ONE day. However, because of my history with anxiety and head & neck cancer I tend to look back and recognise my developments and changes. Here’s what I mean as an example:

 

We continued our plans to have a drive somewhere each second Friday and here’s a couple of photos from those times.

And some excursions of mine…locally to beaches, the lake and more:

Visiting Dad means frozen meals made by me for him, and morning tea I bring. He enjoys the chat and the company and I feel better for having helped him too. Sometimes I do a trip back down MY memory lane living near Manly and the Northern Beaches.

Whilst it’s been good to be out of lockdown, Covid19 risk remains and we wear masks inside any building, and the shops, and use our phones to check in, and show our vaccination status. I started having a coffee out, we enjoyed John Doyle’s book. Me via Audible, B via the book. Flowers from the garden to make into dried flowers, over time. Our serious and grown up day of signing new wills and Powers of Attorney and Legal Guardianship, and two pieces of furniture made by Bernard.

And now: love capturing nature and then making collages.

And I enjoy making collages of all the people I love too….question, where is the one with eldest Grandson?? DONE! And I enjoyed another coffee catch up with my friend, and the 3 eldest grandkids’ Granny too. They asked, “do you talk about us?” No, not much, we talk about how it is getting old(er)!

Joining in with The Big Hug Box for a packing day.

  • I last did this in 2018 and Lisa Greissl’s ambition to help others when she was recovering from a very rare cancer is an on-going project with success after success.
  • She was a recipient of a local large shopping centre grant of $10,000 enabling over 200 Big Hug Boxes to be donated to those with cancer in the Hunter region of N.S.W. Covid restrictions changing but still with rules, meant she could have around 12 people join her at the cafe she & her husband now run.
  • Info about The Big Hug Box can be found here. And Lisa’s story as a Woman of Courage here!

Lisa Greissl was a runner before her cancer surgery which compromised her left leg. Determined to be fit and well via exercise, she has become a rower and now, after completing events in NSW she is determined to be a Para-athlete and will be seen trying her best to become an Australian rep in the sport.

Happy 72nd Birthday, Denyse!

I was very grateful to spend a quiet and lovely day having morning tea out with B, and receiving texts, phone calls and a card (thank you to my bro and SIL) along with Facetime in the evening with our kids and their kids…separately! Knowing you are loved and cared for is a blessing and I am grateful for their presence in my lives. Dad always calls too, and he rang later in the day.

December 2021.

This month brought weather that felt like Autumn or Winter. Accompanied by heavy rain at times, we were OK locally but many around N.S.W. were not. Flooding, flash floods and wild storms caused a lot of havoc. At the time of writing, it is 20degC and not at all summer like! However, as I edit this in early January, we eventually got to summer weather but with added humidity and rain. Not great beach weather.

Mum’s Birthday: 6 Dec. She’d have been around late 70s here.

Christmas creeping up on us. And we don’t mind as it tells us the year we’d perhaps like to forget much about, it nearing the end.

And it’s time for school presentation days, graduations, formals, exams and farewells…each needing to be done within Covid restrictions.

  • So tiring too. I felt for teachers and principals as they had so much to do and then it could all fall in a heap if there was a case of Covid reported.
  • Despite teachers and those who work in schools required to be fully vaccinated, and masks being mandatory, it does not stop people actually getting covid and at the time of writing a new variant has been found and case numbers are rising.
  • So far, fingers crossed, no-one in our family has been affected. By January, there were some with Covid.

Keeping the memories happening for me by making photo collages….

My find for learning and reading..is Brene Brown’s latest. Loving Atlas of the Heart so much.

Head and Neck Cancer: My work, my condition and more is never far from my mind.

I had been part of the inaugural Choir: Raising Our Voices for Head and Neck Cancer Australia and whilst it is elsewhere on my blog, I am leaving the video here too.

As a result of putting some information about my story, and how I can share about Head and Neck cancer Awareness, I have my first invitation*  to speak to a Probus Group in Sydney’s west in late April 2022. If this goes well, and the news is something that helps others, I will seek more opportunities to do so. It’s free of  course but it’s a distance to travel so I will see how much I want to do this. I now have a “Speaker’s CV”.

*Since writing, I have reviewed my ‘doing’ ideas and they are being stopped..in fact, I am doing to stop most if not all plans for travelling to be a speaker or participant. I have been not taking into account how much my inner health is affect, and that I cannot eat well at all unless I am at home. So, that’s it. Learning to BE. Again.

And still, even more news from Head and Neck Cancer Australia when A/Prof  Bruce Ashford, Board Member and Head & Neck Surgeon spoke on Sunrise about the rising numbers (no known cause) of young women being diagnosed with cancer of the tongue. Not HPV either.

My own cancer site was a bit sore, even though I care for it as much as possible so managed a late December appointment to see my Prosthodontist in Westmead. I was relieved all seemed well and there is no sign of any disease (as he said, but it implied cancer). Phew.

I came home on a relieved ‘high’ and with so much gratitude which was tempered within 24 hours to hear news of its return in a dear friend. I won’t name her.

Late December including Christmas. 

We got our planned boosters for Covid earlier than we thought thanks to our kind pharmacist.

We were on target for visiting our daughter’s house for Christmas Day, where we would see all of our family: kids and their kids…for the first time together at Christmas since 2014…until…

23 December, late in the day, I began to feel unwell. Like a “virus”. Lethargy, cough, aches. With a virulent strain of Covid called Omicron seeing a HUGE spike of case numbers daily in N.S.W. from the hundred to the thousands in a week, that meant a covid test. I drove from home very early to one centre on Christmas Eve, and despite it showing it was open on the website the night before, it was closed. Those of us who lined up in our cars for over an hour, had to leave and find another place.

These photos are from late December, early January experience of mine.

That time I went where I probably should have in the first place, to Wyong, and had a long-ish but not intolerable wait of over an hour, and got my test done. Still feeling so unwell, our plans for Christmas were abandoned and we stayed put.

The last week of December 2021.

It was boring, predictably, because of Covid and the need to be mindful everywhere we went (or did not in the end). I enjoyed, just on two occasions, a coffee sitting down at a cafe …after a short browse for books…until I stopped doing that because of ‘getting pinged’ by the NSW Service App. Obviously it was working but I had no symptoms therefore no need to test.

Testing…testing ….was a ridiculously awful time for many thousands of us here in N.S.W. as the pathology places buckled under the huge numbers of tests, and their drive-in and other places closed early or did not open due to lack of staff.

Whilst I detest ending the year on a pretty negative note..hey, Covid negative is a good result for anyone…I would like to hope, that in 2022 we can see ourselves coming out of it with the notion of ‘living with Covid” one that is possible. As my husband says ” we live with the flu viruses, and we have our annual shot but it doesn’t always work but we take that chance”.

Here’s the collage of my new blog photos for 2022. Changing the subject!

The posts for Telling My Story end today…..

But before finishing I want to remind myself of a few things. Where I began to feel changes happening within me that seemed strange and yet I  kept on thinking  the professionals I saw knew more than I did. Not re-telling my story but remembering the WHY and WHEN of beginning this process of sharing words and photos from my life, at age 65.

Acknowledging The Shock of My Cancer Diagnosis & Challenge of Brutal but Necessary Surgeries. 

I have taken till this post to share with you all how hard it was to both acknowledge and manage my emotions with the shock diagnosis of a rare cancer back in May 2017.

I also took me some time to learn more about the qualities of the cancer as was found, removed and sent to pathology. Nothing like having the full pathologist report but it took me some years to look at it. I just kept going because I was 100% confident of my professional team. I even called my cancer #squamouscellcarcinoma of the upper gums and under the top lip. But it was not quite like that. It took me till year 5 since diagnosis to read more, and to now share here what it was:

T4N0 verrucous carcinoma upper alveolus: is on my report. T-tumour 4 – cm area N nodes 0 none found with cancer. 

Verrucous carcinoma is a relatively uncommon, locally aggressive, clinically exophytic, low-grade, slow-growing, well-differentiated squamous cell carcinoma with minimal metastatic potential.17 Dec 2017

The alveolar ridge (/ælˈviːələr, ˌælviˈoʊlər, ˈælviələr/;[1] also known as the alveolar margin) is one of the two jaw ridges, extensions of the mandible or maxilla, either on the roof of the mouth between the upper teeth and the hard palate

I now have greater understanding of the ‘where’ the cancer was and that it has ‘cauliflower’ like appearance because I could see that under the top lip. Knowing I was female, non-smoking and non-drinking made me “rare of rare” my Prof told me once. It appears that other reasons a cancer like that could form in my mouth as that I had a bridge attached to the upper teeth and over time that could have caused severe irritation and I was often told I had candida. I prefer to take my Prof’s word that sometimes we will never know.

Doing this here makes me proud of how far I have come and how much my life as altered due to this cancer being found in the weeks after I decided to Tell My Story. And why there was a year’s gap.

Thank you dear readers and commenters. I have been delighted to see how my life story is of interest.

Yes this is the end but no not quite. Given that as a blogger I am choosing what I write about I am planning now to do a month-in-review post each end of month so, yes, in some ways life, like the stories, goes on.

Denyse.

 

Life This Week. 7.2.2022.

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.

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

You are invited to the Inlinkz link party!

Click here to enter


 

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest

35/51 #LifeThisWeek. Telling My Story. Ch. 26. Part 2/3. May-August 2021.106/2021.

Telling My Story. Chapter Twenty Six. 2021. Part 2/3. May – August.

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 Six. Telling the story as 2021 progresses in three parts. Today is Part Two. May-August 2021.

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.

 

May 2021.

We had pretty good weather in May. We got outside even more. The covid ‘stuff’ had settled. However, we could never be quite sure of its whereabouts so we did “wearing a mask” when asked inside, and I know I was pretty casual about signing in using the State Government QR code. No-one was really practising social distancing but living on the coast, we did not have too many concerns.

We did not travel to Sydney for Mother’s Day this year even though I could have. It just wasn’t happening.

I got to celebrate my 4 years since my Head and Neck cancer diagnosis with a much anticipated visit to Sydney’s Lyric Theatre where I saw Hamilton.

Yes it was everything I had hoped and more. Wonderful.

That week I also came back to Westmead for a 6 month mouth check with my prosthodontist. All is well.

I stopped on my way home at a cafe in a nursery where I used to meet up with friends in Sydney days. It was lovely but it had changed as had I.

June. What happened?

We were continuing to be lulled into some kind of normality, living without too many restrictions and life was pretty good.

I visited my Dad to celebrate his 10 years living in his independent retirement Unit. He is going well.

I had my 6 months check with my regular dentist and he was very pleased with how well I care for my mouth and 8 teeth now! It’s always a treat going to him because we have such a history and he is a great cheerleader too.

I was delighted to recall that my head and neck cancer nurse, Cate, was a Woman of Courage on the blog too. But….the head and neck cancer group getting to Canberra was not able to happen because of Covid restrictions in Victoria and I took a reality check. The reality check for me was about how I would be able to eat when away from home over 3 nights and it was literally something I need to accept. A future post on eating and drinking challenges post head and neck cancer was planned.

But, we were going OK. In fact we had morning tea out twice using our government’s ‘dine in’ vouchers and I was excitedly planning the Soup for the Soul event with my friends from BluJ’s in Toukley.

 

And then late June 2021, just as the school holidays began, and we got excited about seeing our son and his family to celebrate our newly minted 8 year old’s birthday it was OFF. Back to Lockdown. Because of Covid 19 and ONE person’s infection from the newly seen and very nasty delta strain….it was not a good news day or week. So much changed in a very short time. STAY home. STAY safe. And as I write this ready for 30 August publication we are STILL in same lockdown. It’s actually become much more serious. More on that as I try to recall August! OK, we live on N.S.W. Central Coast, around 2 hours from centre of Sydney the capital of N.S.W. On 27 June 2021 we were declared to be part of Greater Sydney, along with Sydney and all its suburbs, Wollongong and Shellharbour to the south and the Blue Mountains to the west. NB: the Central Coast where we live was declared a regional area mid August.

The Hawkesbury River and Bridge. From the side where I took this photo it’s Central Coast.

July 2021.

July holds many memories for me since 2017. It marks the anniversary of my first head and neck cancer major surgery and reconstruction on 6 July (4 years this year) and 27.7 each year – since 2014, is World Head and Neck Cancer Day.

I met other people who were also head and neck cancer patients, carers and professionals in July 2018 at Central Coast Cancer Centre and in 2019 was part of the group called Central Coast Head and Neck Cancer Support who held a Soup for the Soul Event. And, each year the charity for whom I volunteer as an Ambassador, Head and Neck Cancer Australia, has awareness activities on line and encourages communities and individuals to host Soup for the Soul.

I was one who was going this with my friends at my local cafe but once lockdown came and they chose not to open as takeaway business was not a large amount of their trade, the event could not go ahead. So, I made it a virtual event and kind friends and professionals donated to a total of $305.

Some other memories and more from July 2021.

And August Arrived!

Of course we celebrated our daughter’s birthday. Post in detail here. We continued in lockdown which felt endless. I admit I did sometimes get very cranky on social media and then had to stop using it.

I tended then to spend more time outside, or doing something creative. I know preparing and sending off little packs of bookmarks was a positive experience.

Of course, Women of Courage continued on the blog but I was planning to bring it to a close soon. I stayed in contact on line with friends and family as much as practicable but also remembering people at work (even at home) are much busier than I am.

I had successful dental checks – of the regular kind. I am doing well after the surgeries I had in July and August 2021 and I am very grateful for that. I talk to Dad once a week. He is OK and finding the visitors restrictions within his unit complex quite frustrating. He is a sociable person. My brother and sister in law help him each week with shopping and some company. I haven’t been to see him since mid June because of “lockdown”.

I try to get out each day somewhere to notice nature – walking locally or driving somewhere near the water and that helps regulate my mood.

And to do this often:

 

What’s ahead and what other news is there?
No-one knows.

However, I know I am going well and have quite a few choices of art and creative ventures at home. B is making a new TV cabinet and has numerous small projects on the go. He is doing some on-line music lessons and I have similar ones for art. We would not be happy if the NBN stopped working!!

My dear husband has enjoyed writing his 3rd blog post, with another one to come. We are very well suited…different interests but shared common history, love of kids and education (not always the formal kind), and connecting with people. It’s the first time in our marriage of over 50 years that we have spent so much time together at home and for the most part…at least 99% …it’s going well.

Our next door neighbours have two little ones, one born just before Easter and when our family visits were curtailed and I had excess of mini cupcakes in the freezer, it’s been great to share (safely!) a couple of little boxes of treats. Their family cannot visit just as we cannot have ours come. Still, for the greater good.

We have made a promise, once new restrictions began for lockdown, to only go to two stand alone supermarkets, the doctors and chemist and (before they became more restricted in entry) Bunnings on occasions for B. On one day, only one of us goes out (for essential reasons) and we stick to that. I recently made a trip to the local Reject shop…the only place open in a large super centre to buy a stash of cards for upcoming birthdays and celebrations. I also got some fun items which have been sent to Sydney to two families for the school aged grandkids…a care package…costs more to post by express but I would rather they got them! Australia Post employees tell me they have never been busier.

Here’s  two days of contrast (weather and condition wise) at Soldiers Beach.

 

Mon 23.8.21. Warm weather

Great day but look at those clouds.

Windy & wet. Tues 24 August.

Same ‘area’ where person was snorkling on Monday!

 

 

UPDATE: In late August I heard very sad news. Two friends had both died of cancer. One of whom was a Woman of Courage. Her name is Tracey Fletcher King. Here is the link to her story:

The second person is Fergus McCulla, a young man I had the pleasure of meeting back in 2019 as he had questions to ask me about my surgeries for cancer in my mouth. Fergus’s cancer was a very nasty one, and despite “everything” he eventually left behind the pain and suffering, that as his Mum said, he never spoke about. On Tuesday, I will attend his funeral service which will be streamed on-line.

 

Sending my love to the  families and friends of both of these special people. Vale Tracey and Vale Fergus. I am honoured that our paths crossed.

 

 

 

 

And so the second of three parts of 2021 is done. I will of course, be finishing this year’s story. However, I am no longer going to update here as I have found it hard(er) than I imagined in the midst of other life stuff…meaning, I am reducing some of my ‘have to’s in 2022 and keeping Telling My Story going won’t be a blog post. I might do a summary one time, but the recall and record keeping is less appealing than when I committed to starting!

 

Thanks for reading. And maybe just skimming but looking at the pictures. That is cool too. I am grateful I have used this blog to make me accountable.

Last one will be published as the last blog post (and Link Up) for 2021. 51/51….but we have a few weeks to go to that, and I am not wishing the year away!

Denyse.

Link Up #255

Life This Week. Link Up #255

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. 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!

* 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, sales and any that are overly religious or political or in any way offensive in nature.

Next week’s optional prompt: 36/51 Self Care Stories #5. 6 Sept. Link Up #256

You are invited to the Inlinkz link party!

Click here to enter


FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest

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

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. 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!

* 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, sales 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: Share Your Snaps. #6. Mine Will Relate to Head & Neck Cancer Awareness. 

You are invited to the Inlinkz link party!

Click here to enter

 

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest

24/51 #LifeThisWeek. Telling My Story. Ch.26. 2021. Pt 1/3. Jan-April. 73/2021.

Nourish 24/51 #LifeThisWeek. Telling My Story. Ch.26. 2021. Pt 1/3. Jan-April. 73/2021.

News Update:

  • I might have been driving to Canberra today getting ready to attend a Parliamentary Breakfast about Head and Neck Cancer on Tuesday 15 June, but this was not to be. Covid19 in Victoria prevented many of the attendees from coming, so now we “wait” until another date!
  • On Saturday, our time, Blogging Friend Marsha from AlwaysWrite Blog published a post after interviewing me and taking a great deal of time (and energy) to research this blog and find out more. The photo and the link is is now on the side of this blog  and for convenience, should you like to read it, I have it here too. I am very grateful for the way in which this was done AND I am very proud to say how much it means to me that #lifethisweek continues.
  • Taking the liberty today of not posting using the optional prompt, Nourish, but sharing the first third of 2021 in Telling My Story. Chapter 26, here it is.

Telling My Story. Chapter Twenty Six. 2021. Part 1/3. Jan-April.

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 Six. Telling the story as 2021 progresses in three parts. Today is Part One. January to April 2021.

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.

January 2021.

The new year here was quiet. I adopted the word “smile” as my word of the year. We got into planning and organising mode for our upcoming 5o years of marriage celebration.

It was to be “just our kids and their kids” at our place on Saturday 23 January 2021 – the actual day but NO.

Could not be done.

Why? The Covid Restrictions from December 2020 continued into January. There would only be a maximum of 5 people visit a house. So…with disappointment but resignation, we had the celebration over 2 days…and it also continued the following Saturday. Posts are here and here and here!

January is a boys’ birthday month in the family,

My Dad first, turning 97.

Then our son, 41 and his nephew, our grandson turning 20.

I visited Dad on the day.

The weather was pretty mild in January and we did not get any power outages…always a worry when temps rise in Summer. In fact, it was an excellent and pleasant summer month.

Here’s some highlights in photos:

February 2021.

It becomes a bit like back to school, even though we are retired. Back to some regular routines and some necessary health matters. It was me who got to have a gastroscopy (to rule out any bleeding, it did) and then an iron infusion in hospital It sure worked. Levels went from 11 to 225. I kind of noticed and I could go for more walks and sustain them too.

I continued walking pretty consistently most days, visiting the shops but rarely now having a coffee and something to eat. It has become too expensive to do this now as well. Still, I enjoy getting out and about and just window shopping..most of the time! I still keep an eye on clothing bargains and they come and go. I cannot buy on line much at all. I need to try clothes on.

I did like walking when I saw these.

Lots of the eastern states ended up having awful floods and torrential rain. We are in a pretty new & modern  suburban area but lots of roads were affected. I stayed away from places until it is safe and then I ventured out to take photos. Sure were high levels even after a break in the rain.

I got back to the first Head and Neck Cancer Support Group Meeting in a year. It was excellent being back together. The isolation of covid did not help with connection did it?

I went to my first in-person entertainment event (and a first for everyone involved post-Covid) at Newcastle for the Newcastle Writers Festival where Julie Gillard was interviewed by Rosemarie Milsom.

 

Covid restrictions were lifted for visiting at home, so I asked our son if we could all gather together at his place on the day for his Dad’s 72nd and we had fun with all the kids coming, and some play, chatting and eating Grandma’s cakes and snacks. And we got a much longer for FAMILY photo.

March 2021.

My memory is not telling me any moments are standouts really. However, I do recall Easter was here somewhere in the mix. I also drove down to see my Dad in early March 2021 and went back to where he and Mum lived for many years (I did for 10) and had quite a spiritual experience. I became brave enough (it’s been from years of fear about having to use a toilet on way home on the M1) to go to St Ives shopping centre on the way home and treat myself to a wonderful coffee and a slice of carrot cake. Really proud of myself when I make those small shifts.

Felt Mum’s presence here…very close to where she lived…and also where she died, just across that part of the Harbour.

61. The same address as this house…but NOT this house that has replaced our home.

Mum and Butterfly sign…I loved that.

No-one visits us here for Easter – or on long weekends – at our request. The traffic on the M1 to and from Sydney is crazy. We had a drive over to see the water -sparkling – near Norah Head on Good Friday. And later that day, we got to meet the second son of our neighbours…who at less than a week old enjoyed nestling in my husband’s arms.

We just ticked along here at home, with some regular medical appointments and check ups and then….it was announced we could apply for our first dose of a Covid Vaccine. We enrolled at a doctors’ nearby as our GPs were not involved and it was a seamless, and painless and reaction-less experience.

April 2021.

School holidays happened and we were glad to host our son and his family. Great fun day with them, and the girls filled my art heart with joy when they got stuck into the activities they found in my study. The eldest and middle one had all started learning with me waaaay back at Glenwood to use media and materials. Fun.

Our daughter’s youngest was turning 9 and having a picnic birthday lunch. When I asked could I help, I was assigned “take home” bags and can you make them “non-gendered”. OK. I did my best and let me tell you, changing my thoughts about not for a boy or a girl but either was a challenge but I heard they were winners.

Here’s how it ended up. The event was held at Fagan Park and the kids brought scooters and had free rein to play, and then they all got a package of their own picnic. I have a very organised and thoughtful daughter.

Out and About In Nature.

Weather conditions.

Change of seasons.

Beaches.

Rivers.

Creeks.

Trees.

Flowers.

I love it all and try to capture it with my iphone. Here’s what happened in Autumn.

Special Event: Sunrise on A.N.Z.A.C. Day.

It had been about 5 years since I had risen earlier enough to capture sunrise, so when A.N.Z.A.C. Day was on a Sunday, I rose at 5.00 a.m. and drove to Soldiers Beach Carpark (2o minutes away) and found a rock to sit on & watch, wait and give thanks for a year that has not been great but we got through. I figured too I was honouring the original A.N.Z.A.C.s It was an amazing privilege. 25 April 2021.

As I drove back home, I stopped and photographed the cenotaph at Toukley R.S.L. My collage is from 2020 and then 2021.

A Special Day To Visit My Dad.

“I’ll be down to see you next on your Mother’s Birthday.” I said to Dad. So it was on 26th April, I drove to Dee Why where Dad lives in retirement comfort to share some morning tea and memories with him. His mother, Gran to me, came to Australia as a war bride in 1920 and her life was ‘T for tough’ for a number of reasons. So, 26th April, I tried to get 97 year old Dad to have some gratitude and compassion for this woman he remembers as sad and cranky.  I said it would be helpful if he could, to try to see the challenges she faced after leaving her home country. I think it made a difference to his thoughts.

My memories from the day of my visit.

From my stop at Pymble: lovely camellia.

Dad agreed to a photo this time…and we even stood for it. He “is” however, holding onto me. On the right of him, the photo on the wall is of his mother and father on their Wedding Day, 1920.

I always try to do a life selfie on my way home.

And as I leave Dad’s I often drive to where I can see the beaches I remember so well from living nearby as a teen. How fortunate I was for those years to be near Manly, and to go to Manly Girls High School…which, funnily enough was/is in Brookvale and now known as Northern Beaches Senior Campus. This is from Freshwater looking back to Manly, North Steyne and around that cliff is Queenscliff Beach.

And that, is it for now. The first third of 2021. It was made easier with the photos to help me remember ‘what, who, when’.

Thanks for reading this latest Telling My Story.

The whole series is here.

Denyse.

Copyright © 2021 denysewhelan.com.au – All rights reserved.

Link Up #244

Life This Week. Link Up #244

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. 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!

* 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, sales 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: 25/51 Share Your Snaps#5.

You are invited to the Inlinkz link party!

Click here to enter


FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest