Sunday 22nd May 2022

What Is 17 May All About? #HNC. 5 Years. 32/2022.

What Is 17 May All About? #HNC. 5 Years. 32/2022.

It’s 17th May 2022 as I write.

I wasn’t planning a post but this date “made me do one”.

It’s because 17 May 2017 was a hugely significant day in my life, as it was the day I was told I had squamous cell carcinoma in my upper gums.

The story has been told in a few places, here for the first post,  by me, but today I want to use pictures more than words!

Marking the time I knew I had cancer.

 

My progress: 2017 into 2019

 

2019: 2 years ‘reward’

And going to Sydney to see Hamilton as my 4th year ‘reward’…very special:

 

Each May, I have both remembered and because of my relatively good progress with recovering from this form of cancer I had, I like to appreciate my teams and my healing body too. And to my husband and family and friends (on-line and off!) : you all help my healing with your kindness, love and care. Thank you.

And now: 5 years on.

I admit it feels somewhat surreal. Perhaps I couldn’t ever see it coming? No matter, it has arrived. I am here. I am very glad to be well. Here’s my photos from today: Tuesday 17 May 2022.

Special way to remember:

The word ‘heart’ means a great deal to me after using the song, Heart, as part of my self-care and courage building on my many, many drives to and from Westmead for long stays in the chair…and of course, heart is connection to those I love, and who love me…and the universal message of love is about caring.

My ‘gift’ to me is this: a bracelet with links of hearts and infinity symbol because love is forever….

Thank you to everyone from my heart.

Denyse.

17.05.2022.

Joining in with Natalie for Weekend Coffee Share later this week.

Thank you Natalie.

https://natalietheexplorer.home.blog/

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Taking Stock.#5. 48/51. #LifeThisWeek. 128/2021.

Taking Stock.#5. 48/51. #LifeThisWeek. 128/2021.

This is the last taking stock  in 2021 and may not be another when in 2022.

So, as this could be the “last one” I am going to share here about my life as it is on the eve of my 72nd birthday.

And as Pema Chodron says here…..

I am grateful for all who have made a difference in my life. Not all people are represented here because I may not have had an image. So, here goes, using images to ‘match’ a word. And using my alphabetical list.

 

Admiring: those people who are the trained professionals in all allied health, surgery and more, and have cared for my health.

Becoming: a part of a family, grateful for the love, care and kindness of parents and grandparents since 1949!

Curious: about life and learning….always! 

Delighted: to meet up with on-line friends when I can.

Excited: that we will get to celebrate my birthday…..out for morning tea! It suits us both to do this…here’s a memory from 2018. If the rain stays away we will be going here again: a local nursery.

 

Feeling: that time is moving way too fast….that seems to happen after 70!

Goingto my Dad’s sometime in December to share some meals and treats. He’s certainly been the constant in my life…known me for more than 72 years!! This from my 71st birthday when I am not sure who was helping who stay on their feet. 

Helping: Head and Neck Cancer Australia as an Ambassador. I have held this volunteer role for 3 years and as I said to the CEO recently, “you got me for life“.

Imploring: people to keep an eye on anything (related to Head and Neck cancer* symptoms)  that might be not healing or increasing in pain. size and so on…and ensuring if a GP or dentist, doesn’t take it seriously, to seek out another option. *all cancers of course,  but these ones have no diagnostic tools.

Joking: No idea what was funny at Oxley lookout last year but this bloke is quite the joker….and this wife, is not always ready for his sense of humour! 

Keeping: this blog going into its 12th year is testament to my commitment but to the engagement of this blogging community even more! 

Loving: the freedom of days’ activities choice when retired. Sure, there is a routine of sorts, and yes, we get up by a certain time (not tellin’) …but no bosses!

Making: memories for me and others! By cards, photos and little albums. I love doing it too.

Next: I am too easily wanting to plan what is next yet, at the same time trying to stay in the present. The one thing for me is knowing where we will be living next year, and so far, the owners have agreed to us staying on. HOWEVER, the way real estate prices have risen here, houses in our street up by $200-300K in less than 4 years, we suspect we will get a rent rise. Sigh.

Observing: the places where I lived as a teen and older and having a deep appreciation for that time. 

 

Pleasing: to notice that I can continue to change some health habits slightly to be more health-aware in my ageing years.

Reading: the many and varied posts that YOU, my blogging friends, share here for Life This Week. We are, today, at #268 of the link up. And how I met some of my blogging friends two years ago.

Staying: on track with meditation. It will be 2 years without missing a session by end of 2021. I now do Daily Calm in the morning and another track in the evening. It still counts as one day! 

Trying: to remember all I am grateful for more than ever…not everyone gets the chance to continue living as I have post-cancer.

 

Understanding: that life is not static. Der. But sometimes when I don’t want things to change, I then remember that they change anyway so grasping to keep things are they are is not on. I have learned much about this thanks to meditation, and listening to a range of CDs from teachers of Buddhism and more. Very wise people..and we are all human. 

Viewing: old photos for this post and feeling the warmth of nostalgia but also heeding the point above! 

Welcoming: changes to Covid restrictions here in N.S.W. soon, with reduction of places where you need to sign in with QR code, and having the choice to wear a mask. We think, for now, we will continue to mask up if in a crowded shop or doctors’ surgery. Definitely needed recently at a Big Hug Box packing day. NB: hope with new strain variant, we will remain vigilent.

X- “X-tra grateful” to all of the women who shared their stories of courage. In the 3 years, more than 72 women shared their stories. Wow. I have included images of all who continue to blog and link up here fairly regularly. I “hope” I have you all in this group. Let me know, if I have missed you. 

Yes: to more plans to do ‘less’….and that sounds like a contradiction. In the meantime, here I am over decades of my life ‘doing’ what I most enjoy: connecting with those I care for and who love me. Perhaps a bit of a stretch re Former PM Julia Gillard, but she did thank me for my education roles. 

Z – Is there anyone else I need to show my gratitude and admiration for their part of my life? Yes, it’s an old image but the LOVE from this Papa to his only grandchildren cannot be surpassed. And the love we had for him is exemplified in my brother now being Papa to his 2 grandkids and that B became Papa when his eldest granddaughter couldn’t get her mouth around Grandpa, and out came “Pa-Pa” and it sure stuck.

Thank you all for reading, commenting and sharing your blog post today.

Take care,

Denyse.

 

Started Life This Week Link Up. Sept 2016.

Life This Week. #268

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Cancer: Patients, Family & Carers.#ShareYourSnaps #6. 30/51 #LifeThisWeek. 91/2021.

Cancer: Patients, Family & Carers.#ShareYourSnaps #6. 30/51 #LifeThisWeek. 91/2021.

Cancer does not have a timeline.

It can just appear.

Often times there is NO reason nor cause.

Many who have been diagnosed with a cancer with known risk factors but none apply to them, will be puzzled.

I am one of those but I have also learned to let go…because as my wise husband says “in the overall scheme of things, does that matter or help?”.

This month, on the blog I am focussing on cancer: head and neck cancer, because it is the one I know best.

I WAS excited to announce a community-held event as a fund raiser for Soup For The Soul at my local cafe but, nothing can happen so, I changed to a VIRTUAL Soup For The Soul Fundraiser and this is my POST where there is a LINK directly for donations. Thank you in advance! 

It also is the month when World Head and Neck Cancer Day is held: 27 July.

This year, because of Covid Restrictions a lot of what we took for granted in getting our messages out there to the community have changed. But my blog is still here.

Sadly not much is happening fact to face right now, and I post this image when we were very hopeful we would be able to take the head and neck cancer message to Canberra. But again, that has been postponed.

This Sharing of My Snaps is About a Number of Subjects.

See below for blog disclaimer. 

Cancer Help.

There is, in Australia, a Government website here . 

Of particular interest to me is to find and share more of the cancer I have. Try it if you need to find out more.

https://www.canceraustralia.gov.au/affected-cancer/cancer-types/head-neck-cancer/what-head-and-neck-cancer

Head and neck cancer occurs when abnormal cells in the head or neck grow in an uncontrolled way. These cancers usually begin in the squamous cells that line the inside of the mouth, nose and throat.

Head and neck cancer is 1 of the 10 most common cancers in both men and women in Australia. I have heard it is rare. However now I realise it is not well-known at all. Perhaps my descriptor needs to change.

What are head and neck cancers?

Head and neck cancers occur inside the sinuses, nose, mouth and salivary glands down through the throat. Although these cancers are different, they are treated similarly, so are considered as a group.

It is estimated that there will be 4414 cases of head and neck cancers diagnosed in Australia in 2021. These figures include cancers of the tongue, gum, mouth, salivary glands, tonsils, pharynx, nasal cavity and larynx, but not cancers of the lip.

The five year survival rate is approximately 64.7%.

source: https://www.cancer.org.au/cancer-information/types-of-cancer/head-and-neck-cancers

 

Cancer Council has sites throughout Australia too.  Ours in New South Wales is found here. I have booklets from my local Cancer Council shop at Erina Fair to help me and anyone else with a cancer. These books are free and I highly recommend them.

There is the second volume of which is a series of stories co-ordinated by The Swallows on Facebook : found here.

The Swallows: Booklet

Other information about head and neck cancer found here too:

Julie McCrossin AM, Australian Ambassador for Head and Neck Cancer Australia has copies. Tell me in the comments if you would like one.

Beyond Five. 2018. Now HANCA. Julie McCrossin AM holding a radiation mask. Nadia Rosin CEO & Me.

Marty Doyle, fellow Head and Neck Cancer Australia Ambassador, also wrote this book about his experience with head and neck cancer. He is going well some 17 years post his diagnosis.

I also bought a compilation of cancer stories directly from the author as I wanted to read more stories of others’ going well post-cancer. And I include some other books which have helped me.

Now…some more information can be found here at Head and Neck Cancer Australia (formerly Beyond Five) where I am an Ambassador.

I have taken part in a video series on nutrition, shared my head and neck cancer story on this site, and that of Chris O’Brien Lifehouse where I had my surgeries.

For more information about the special aspects of treatment for those with any cancer, go here to Chris O’Brien Lifehouse. This is in Sydney and is a private hospital specialising in comprehensive cancer care. That is, all under one roof as was the vision of the late Professor Chris O’Brien AO. His daughter, Juliette O’Brien was a recent Woman of Courage. 

And now to this information and more from me, about cancer progress and living with the results of head and neck cancer. My posts are here. 

 

The book I am reviewing. Written by a Psychologist from Chris O’Brien Lifehouse.

Review is coming soon.

This story: The Big Hug Box.

I have written about my connections with Lisa Greissl who founded the Big Hug Box in 2018. She too, was a patient at Chris O’Brien Lifehouse and in recovery wanted to do something to both help cancer research (hers was a very rare cancer) and to give back something to those who saved her life. She knew, in recovery, a BIG hug was always appreciated but not everyone can give or get one in person as they recover from or go through cancer. Find the Big Hug Box here.

Lisa’s idea has moved forward and there is much happening locally in the Newcastle region of N.S.W. Companies raise funds to share Random Hugs of Kindness boxes to Cancer Centres in some states and cities. The latest news is found here. I got to know Lisa personally when I offered to make bookmarks for inclusion in the early versions of The Big Hug Box. I must have donated over 400. I also saw someone I know who received a Big Hug Box and she saw that she knew who made the bookmarks! Lisa has also shared her story as a Woman of Courage.

Whilst this is a much more wordy post for a Share Your Snaps, I wanted to give the space to what has helped me in terms of cancer so that readers and bloggers here may have better ideas and reference points.

This is an Australian based blog and all of my links are to places within Australia, other than The Swallows in the United Kingdom.

There are many places and site for help in the U.S.A. where Oral Cancer is often mentioned separately to head and neck cancer. World wide, the associations and professional bodies relating to all cancers do all they can to improve outcomes for patients.

And, I share my story learning to eat again here: from Head & Neck Cancer Australia. Made February 2020 just before Covid shut things down.

Thank you for reading and commenting.

Denyse.

Blog Disclaimer:

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

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

Link Up #250

Life This Week. Link Up #250

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.

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New Normal For Me With Head & Neck Cancer. 43/2019.

New Normal For Me With Head & Neck Cancer. 43/2019.

It’s occurred to me that I’ve been writing posts about how it was for me BEFORE a cancer diagnosis hereand there are the series of posts about my surgeries and progress found here….but I have not done any updates of NOW.

Now as they say in cancer circles, is the new normalwhich is described here:

Finding a ‘new normal’

Many survivors* say that cancer changes them. After treatment, they may feel different, even though they look the same. With time, survivors often find a new way of living. Many call this a “˜new normal’. It may take months or years to find a “˜new normal’.

Misconceptions about treatment  ending

  • I should be celebrating.
  • I should feel well.
  • I should be the person I was before cancer.
  • I should not need support.
  • I should feel grateful.

Read more at https://www.cancercouncil.com.au/15289/b1000/living-well-after-cancer-45/living-well-after-cancer-back-to-normal/#xc5f7pBq7VeQ7Oeq.99

Fellow Head and Neck Cancer Survivor, Julie McCrossin AM, the inaugural Beyond Five Ambassador hosts a series of podcasts here called About Cancer.

About the word: survivor. My personal choice is this one. However, it is not always looked upon well by some. I have no word to replace it for me. I personally do not like warrior nor does thriver work for me as it does for some. It’s just me. I tend to use patient maybe because I am still getting cancer checks. To each their own, right?

Now, back to MY version of New Normal.

I have really been considering this in 2019 as it ‘felt like’ and ‘looked like’ I was back to Denyse. But which version of Denyse? I am ageing too and I wonder if some of my thoughts are also linked to being in my 70th year.

When I was in pre-cancer times, I was so ‘caught up’ with managing my stress and emotional load at having moved from Sydney and all that entailed in getting used to a new normal for that situation. Suddenly, new normal meant:

  • no longer living in a house we were paying off
  • no more employment for me
  • no more regular contact and care for our grandkids
  • being a more stressed-out person than I liked
  • trying hard (so hard) to be better able to manage the life I had then: 2015-mid 2017

Then cancer entered my life.

Very suddenly I took on a new way of looking at life, and learning what was ahead.

OK. I was stressed but in some ways I knew what was coming and even though there were unknowns, I do know NOW, I have made it through

  • diagnosis,
  • 4 surgeries,
  • recovery times,
  • many prosthodontist visits and treatments,
  • adjusting to life with less ‘in my mouth’ to help me eat,
  • then getting more in my mouth to help me eat…
  • and bingo, the smile is back so…
  • back to normal, right?

OH no, so not true. For me at all.

Partly it was my belief I could be back to eating what I used to eat.

I even bought these foods after not buying anything crunchy for well over a year and they disappointed me greatly. Perhaps, for the chips, a good thing.

However, some of this is true but more is not.

I can only crunch and chew for so long.

It is almost a year since the last surgery inside my mouth to add more skin to the inside of my upper lip and around the top ‘jaw’ abutments. I got my upper prosthesis screwed in on 21 August 2018 and it has been removed only once for adjustment by the prosthodontist. I do upkeep: two routines daily, involving 4 steps using this:

In being totally honest with myself, I can say I need to remember more than anyone that I have changed because of cancer in my mouth.

Head and Neck cancer never really leaves us. This is the reason for Beyond Five where I am now an Ambassador. This site helps patients, carers, families and friends with ‘the years after cancer’s 5 year checks are up’.

Announcement of My Ambassador Role.

It’s stays as it affects our inside and outside areas of the neck, head and inside the mouth, cheeks, sinuses and down into the throat and more. In my case, it is all in the mouth. I was told pre-big surgery, no-one would know you have had cancer or surgery once this is all done, and that is true. In some ways, that is a reason why it is up to ME to manage my new ways of eating rather than expect, as I look normal, others will be able to guess what I need.

This comes home to me even as I can still struggle to eat a meal I have prepared. It takes a long time to eat and sometimes, I just divide it into 2 meals as it tires my new mouth and makes it sore.

This is what I know is my new normal.

  • I get myself up each day between 8 and 8.30 a.m. to eat a nutritious breakfast or weetbix or cereal with fruit/yoghurt and milk
  • I take time to eat as it takes time and as I am retired, I get to enjoy reading the morning paper that’s been home-delivered
  • I will do any minor household chores which are shared with my also-retired husband e.g. a load of washing is put on the line
  • I check my emails, my blog (I have a blog which posts a new post 3 days a week) and any social media
  • Time to get dressed for the day. In October 2017, following the first major surgery I had lost a lot of weight and enjoyed the fact that I needed to buy new clothes. As a previously very overweight person, this was F U N
  • However, I found this to be a new normal for me called #dresswithpurpose and I joined in #everydaystyle for around a year and what a great community of support surrounded me post-cancer. I had no top teeth but as my husband said “I smiled with my eyes”.

Dress With Purpose photos: 2017 into 2018.

  • Each day, after a photo taken by my husband, I venture out for a coffee (and now more often, a treat to eat) somewhere local or more distant. I love this part of my new normal.
  • I have my coffee, I take out my mini journal kit, and draw/write and I people watch.
  • Sometimes I browse if I am at the shops, other times I may be out in nature and enjoy that too.
  • I have my own car which helps me be independent and drive myself to all of my Sydney appointments.
  • After this it is closer to the middle of the day and I come home when I am ready and get my very crunchy lunch ready. It is a joy to crunch.
  • More reading after lunch and sometimes more work/play via the computer.
  • Some outside chores including nurturing the plants that gives me further purpose in cancer recovery
  • Then it is meal preparation or simply getting small frozen version of an earlier meal from the freezer. Batch cooking is the way I go: meat meals made with mince, lamb shanks, beef slow cooked and of course teensy cakes for treats. I love them too.

Now I know this about my new normal.

I need to appreciate this new normal and the state of health I am in. So far, almost 2 years since diagnosis, there has been no return of cancer. I have the best health professionals looking after me and I am grateful eternally for them, their skills and their care.

I will continue to learn more about myself as I both age, and get used to ‘what’s inside my mouth’. I do know that pain comes and goes. I also am reassured that my mouth continues to be healthy inside and I am caring for it well.

I do not have any mobility problems with my right leg even though the fibula was removed for my new jaw. Thanks too for the skin and flesh, right leg!

I am loved and cared for by many as I do of them. This is a very good way to live.

In my 70th year I continue to enjoy creating with art, meeting up with friends for coffee rather than a meal, travelling to other cities by car for events and entertaining our family, along with continuing my engagement with school education, and promoting more about the awareness of this rare, but not nice, cancer called Head and Neck Cancer.

My new normal is awesome.

Denyse.

This post is being shared on link ups here, on Wednesday and  here on Thursday.

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