Sunday 22nd May 2022

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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My Head & Neck Cancer Patient Update. Been A While! 51.1/2021.

My Head & Neck Cancer Patient Update. Been A While! 51.1/2021.

I am coming up to four years since my head and neck cancer diagnosis on 17.5.2017.

I wrote a great deal over the years about my head and neck cancer to both help myself process it all, over the many times I faced challenges including surgeries and long recovery times and I wrote for others. This is why my blog has a head and neck page to be found here.

Then in late November I wrote this.…and was very pleased to put my head and neck cancer posts away. Even though, I have included parts of this in various posts such as Life This Week and Telling My Story since, today is the first time I am writing an update.

What Happened When I Was Issued With My Upper Prosthesis.

  • I smiled A LOT.
  • I had an expectation to be able to eat foods I had missed.
  • I was told, I now know was a feeble attempt at a joke, by one of the prosthodontists, that I had to bite into an apple before I could leave the day I got those teeth.
  • I am so annoyed  disappointed, even over two years later, that I was misled with some kind of joke because life WITH an upper prosthesis is nothing like having my own teeth or even an upper denture.
  • I have no feeling in my upper lip as it too had cancer and was partially reconstructed.
  • I could eat some foods I had missed initially: missing crunchy foods….but I have to guide whatever I am eating towards my mouth and use my tongue to sense what is coming, and then the food is put in my mouth by me
  • I still have challenges.
  • I still, after all this time, cannot always guess the right amounts of a food and suffer with mouth spillage at the sides.
  • I often put too much on a fork or spoon…because I am hungry…because the food is warm…because that is life time habit

These are lessons I am continuing to learn each day…and it’s my third year of living with the reconstruction in my mouth.

My inner mouth – gums at the front and behind the upper prosthesis are skin that was harvested from my thigh. My palate is the same. My wonderfully kind and knowledgable prosthodontist (not the ‘joker’) tells me skin from the leg was never meant to be in our mouths so it will always be a challenge in terms of my management to keep it healthy as I can and for me to put up with the level of daily discomfort.

What Life Is Like For Me Now As a Recovered and Well Head & Neck Cancer Patient.

  • There is no sign of cancer within me. My head and neck surgeon does not need to see me until September 2021 – a full year since last visit
  • I am seeing my prosthodontist in mid May to have a 6 month check and CT scan for bone changes.
  • I am self-caring well for the upkeep of cleanliness inside my mouth using a water pik daily, a micro brush around the abutments I can reach and cleaning my upper prosthesis, partial denture and remaining 8 teeth with care.
  • There has been no addition gum overgrowth and for that I am incredibly grateful.
  • I keep smiling.
  • I love to share my story.
  • I continue to be an Ambassador for Head and Neck Cancer Australia
  • I will reduce my local head and neck cancer group attendance
  • I will help raise funds in the Soup for the Soul event locally where I have sourced some great help from a cafe.
  • I will share the stories of others along with my updates on social media.

BUT…here is some more:

  • I continue to learn that I have to live with restrictions.
  • I can no longer eat anywhere other than home unless it’s a manageable ‘cake’ and ‘coffee’ somewhere.
  • It makes travelling overnight anywhere a bit challenging. Mostly I can take my own foods and utensils.
  • I cannot go to someone’s place for a meal and I think…even though I do not make any fuss of it…most people really do not even think to perhaps ask what may be suitable. To offend no-one, I have to say, it’s a morning tea or afternoon tea or very light lunch that I can probably eat.
  • I feel, even though I look normal, that to understand what is happening for me inside my mouth it is better that I admit to what are my limits and stick to them as I do not want to offend….
  • It is messy when I eat.
  • I often have food spill from the sides of my mouth (particularly if I have put a bit much in) and I constantly wipe the sides of my mouth needing paper towels and tissues nearby.
  • I always have water close to me.
  • I often eat alone…not because I want to but because I take so long and I can no longer really eat and talk…my husband has kindly told me, of the ‘look’ of food at the front of my mouth.

Why Update Now?

  • I was sore eating yesterday. Stinging sore inside my mouth.
  • I know I have to expect a certain level of this.
  • My mouth is much smaller inside than I remember …because of the hardware that’s been placed inside.
  • I knew I had to change somethings about my eating habits to help.
  • I did this initially by using a large teaspoon for cereal instead of a dessert spoon. It was better.
  • I have now cut up foods into small pieces and resist putting larger (as I was) amounts inside.

I am admitting my self-care and knowledge of how to help myself needed to be written and spoken about. For too long, I have looked and sounded right…and that is good…but for many of us (and now I include me) we are never the same post- head and neck cancer.

I am forever grateful for my professional team who have ensured my wellness to this day!

I used to think I couldn’t admit to having some issues because I have had such an awesome and great recovery. I now know that in being human…and a vulnerable one at that, I had to ‘out myself’.

This is why I posted today.

Update: got some largeish teaspoons. And, have cut up food into smaller pieces. Winning at changing habits!

Take care everyone,

Denyse.

 

 

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My Latest Head & Neck Cancer News.120/2019.

My Latest Head & Neck Cancer News.120/2019.

For those who are new to the blog and my head and neck cancer story, all posts can be found here. 

As I reach the end of the year, it’s timely to do an update of how it is to be living with the results of head and neck cancer.

Specifically for me, the cancer was found inside my mouth: top gums and under the top lip.

It was named squamous cell carcinoma at first diagnosis after the initial biopsy but after my first surgery here, the results from the massive pathology testing done then according to my head and neck cancer surgeon was a form of verrucous squamous cell carcinoma. I do not pretend to understand my version of head and neck cancer. It IS oral cancer but for ease of others finding my blog I file it under head and neck cancer.

I am told by my professor that my version of this cancer is rare. The fact that head and neck cancer like mine (no Human Papilloma Virus/HPV cause) and no risk factors like smoking or drinking alcohol makes me “rare of rare”. Professor Jonathan Clark AM 2019. Sigh. Ok, I am glad it’s rare I guess but there is a puzzlement always about the how and why of my version of this cancer that I discuss with my dentist (who ordered to original biopsy after I had him take the bridge and teeth out…so I have learned to accept the no reason as best as I can.

Always grateful for my head & neck cancer surgeon

Supporting Others Helps Me Too.

My Blog.

This place (right here!) provided me, initially, with a way to tell my head and neck cancer story. I am glad I still keep going with the updates. Now as I hear, it can also be a place that others who are newly diagnosed, family members, friends and professionals can pop in, using the top of the page link to see all posts.

My Social Media Presence.

Twitter.

I like to talk (!) and connect so when I want to do this, without face to face catch ups (we are all over the world!) then it’s to social media I go. I have an active twitter account https://twitter.com/DenyseWhelan1 where I follow head and neck cancer patients, carers and professionals. Some of those include Beyond Five where I am an Ambassador, my fellow Ambassadors Julie McCrossin and Marty Doyle. The New Zealand based Facebook group, found here, has two of its admins Maureen Jensen and Tammy Von Keisenberg who are on twitter.

Facebook.

My blog’s facebook page https://www.facebook.com/denysewhelanblogs/ is where I do my main connecting these days and also use this profile in the Head and Neck Cancer Support Aotearoa. If you have head and neck cancer, or a family member or friend does, this group with over 500 members is an active and supportive place to share, read and find information. Meeting up with Fergus was a delight and getting to know Tara too. These people are the first who have also been diagnosed with a head and neck cancer in similar place to mine and we all have Chris O’Brien Lifehouse as our cancer centre.

Groups.

The local Head and Neck Cancer group for me (Central Coast NSW)  has a social media presence with a public facebook page found here: 

Beyond Five: found here, also lists meeting days and updates from groups around Australia. This is the link to the general page.

Most months I attend the Central Coast group meetings and next year will continue the practice. The group is open to all, and each 3rd Thursday of the month from 10 – noon we can be found at Erina’s Cancer Council rooms, within Erina Fair. Gary Mar is the group’s facilitator.

Beyond Five Ambassador.

I am delighted to announce I am continuing in this role for 2020. I have really enjoyed learning how to be the Ambassador that works for me and for Beyond Five and this is going well. It was in this role that I supported Soup for the Soul Fundraiser back in July for World Head and Neck Cancer with  my own (on-line!) and the event held at Cancer Centre Gosford Hospital in July. The group is grateful for the Head and Neck Cancer Patient Co-ordinator Nurse Lisa Shailer for her insights and lead and to Twynette Dickinson from the Cancer Council for her interest and presence.

Eating

I planned my eating in advance of going to the Christmas Lunch. It’s the best way for me.

  • I have found eating some foods fine. These include breakfast cereals with milk, some cracker biscuits with cheese, a small cake, grapes, mango and some meals which include mashed potato, meat (like cutlet or steak) and some tomatoes which can add some liquid to the food. It is a challenge for me to eat outside the home so I have accepted that unless it is say at my daughter’s house, I will be fine with a cup of coffee, a cake or something to dip into the coffee.

At Head & Neck Cancer Support Group Christmas Lunch this was my manageable and enjoyable choice to eat while socialing.

 

  • The foods that can be ordered out take me far too long to eat and my mouth gets sore inside. Whilst I have upper teeth they are tight inside my mouth and up against the gums and the biting and chewing that is enough for safe swallowing takes time. I get tired. The food gets cold. I tried to eat a meal out once and was refused a bag to take the rest home so another reason for no eating out is it is very expensive to waste money on food I cannot eat in two stages.

 

  • My main meals at home are like a bread & butter plate size. Or I use a regular plate and eat half one meal, cover it, and refrigerate it and eat the rest the next day. Because I have found this is a good strategy it means at least once a week I am eating some red meat (iron) that I love and some accompaniments and also sharing this meal with my husband. Most meals though, are ones I have made in bulk and are in small containers for me to eat after defrosting.

  • Occasionally I will try a salad as caesar salad is a favourite but again, I take so long and my mouth gets sore, so I make it in two halves. I cannot eat corn on the cob, tomatoes were lovely but they are affecting my mouth by stinging now (skin is very sensitive) and an apple…well, how long do you have? I cannot bite into it and the skin is too challenging, so if I give an apple a go, I may just grate it.

 

  • I have never been a spicy food person and would be hard pressed to have anything like that now or anything too hot. Cold is better in my mouth than hot.

 

  • Inside my mouth the skin is of different ages – some was added in 2017 and the remainder in 2018. My right thigh is the donor for my delicate areas between the gums and inside of lips. I have, as you would know, the flesh and skin from my right leg as my palate.

The wounds are where the bone (fibula) and skin/flesh were taken in July 2017

  • What is interesting is that because the top of my mouth is made from my leg (skin, flesh and bone) it acts like a legI am fortunate that the palate no longer grows hair.

 

  • However, I cannot taste nor feel any food in the top half of my mouth. IF I really want to savour a texture or taste, I need to put the food upside down in my mouth!

Appearance

Unless there is a reason to do so, I no longer mention to anyone new that I have had cancer. The reasons I did in my first years was about the way I looked. I certainly DID look different with no top teeth (upper prosthesis) and a mouth that was healing along with my leg. It was, for someone like me, a talking point or conversation started in 2017 and until I got my upper prosthesis in August 2018.

After that for a few months those I had met before were amazed to see me with teeth and smiling..even my head and neck surgeon (above) who remarked “Denyse you look fantastic…great work Suhas” when I’d sent him the email photo of me after Suhas (the prosthodontist) had fitted my upper prosthesis.

My top lip on the right hand side is pulled in (still) despite the months I spent with a stent trying to push it out. At least the stent did the work for me to have the upper prosthesis fitted. My top lip and under my nose is completely numb. It is very dry too and can itch. I have bought tube after tube of lip creams/balms/ointments to be told that there are some nerves in there that no longer work and so I just need to keep things in better condition for me to feel more comfortable instead of this constant tightness. The top lip appearance changes completely when I smile. So, I smile as much as I can!!

Nothing is as it seems. Sometimes.

I would be less than honest if I did not make a comment about this. I have found as time passes, that with little visible differences now in me, there is no real interest in my head and neck cancer. This is in my family and friend relationships too. I have pondered this and I believe once the novelty (strange word to select) has worn off this cancer diagnosis of mine  – it was very unusual – then people move on. In some ways I have but I also can never forget I have had cancer.

Each time my mouth moves one way or another, I feel the difference. No-one can see it of course, but I know it. When I can not stretch out my right leg or even my right foot then I am reminded of the sacrifice one part of my body made for another.

In the lead up to my third year of living with the diagnosis of a head and neck cancer (May 2020) I do take time to count my blessings and express gratitude (of course) but there is something quite profound about having a part of your body placed in another part of your body so you can function and live as well as possible.

Celebrating my 70th Birthday: with my husband who has been by my side throughout almost 49 years of marriage, but even more in the years since I was diagnosed with HNC.

I do get on with my life (as a now 70 year old!!) of course but have to say, despite the head and neck cancer existence for me, that I am noticing I can be more distracted and interested in hobbies such as my art and designs, getting out to meet people, going to the shops..ahem..for coffee of course. NOT always clothes shopping as my husband seems to think.

Am I grateful?

Yes I am.

However, I will continue to be monitored and tested for a return of cancer until at least 5 years has elapsed from diagnosis. So, I will be looking at May 2022.

Appointments scheduled.

Ask any cancer patient and they will likely say that once the more frequent appointments spread out (for the good news reasons like mine) there is an initial feeling of what now? I did have that this year once I got to May and was told my future appointments would be 4 monthly. So I am back to the Prof early March 2020 at Chris O’Brien Lifehouse. My prosthodontist who saw me for my…40th appointment late November does not need me to return till mid March at Westmead. I am never quite sure of what the next appointments will entail. I trust I will continue with my path of wellness for which I am very grateful.

Head and Neck Cancer Patient Forum. 2020

On Friday June 12 in 2020 at the Garvan Institute I will be a patient who is interviewed about my experiences with head and neck cancer. It is open to patients , carers, family and more. The details are here. Costs are free to attend for some and a small fee for others. The link is here and I will be updating no doubt in 2020.

About my word of year 2019: Integrate.

When I chose this word at the end of 2018 it was after a conversation with my husband where he pointed out that maybe my cancer could be less important in my daily life. Mmm. Easy to say from a non-cancer person but much harder to do for me. Then. However, when I had the word engraved on the bracelet I have worn daily since 1 January 2019, on the back it says “HNC & Me” meaning that over time I hoped to grow to the point of head and neck cancer being a part of me but not the main part. I can now announce, I have noticed this for myself in the past few months so like all things, it happened in its own time.

Thank You.

The blog is my place for recording what I can share with the wider world about what it is like to have head and neck cancer. I now know some newly diagnosed patients and families have been assisted by reading the blog posts which I keep in a special page on my home page – right hand side. When I give someone my business card, the website is there and my information as an Ambassador for Beyond Five; head and neck cancer awareness on-line.

Top: L: Beyond Five Ambassador R: My Prosthodontist & Nurse: Westmead Bottom: L: Professor Jonathan Clark AM R: Sr Cate Froggatt

 

Earlier this year, I was published here too if you are interested. Life, Death Whatever take submissions from around the globe and a book will be coming in 2020

Thank you to my readers. This was a long-ish update!

Denyse.

Joining each Wednesday with Sue and Leanne here for Mid Life Share the Love Linky.

On Thursdays I link here for Lovin Life with Leanne and friends and on Fridays, it’s Open Slather here with Alicia.

Copyright © 2019 denysewhelan.com.au – All rights reserved.

 

 

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Head & Neck Cancer. June Updates & WHNCDay 2019. 64/2019.

Head & Neck Cancer. June Updates & WHNCday 2019. 64/2019.

It would be remiss of me not to do an update in June….yes it would!

Having a CT ‘Surveillance’ Scan.

Following my 2 year (and every 3 month) cancer check my Professor determined it was now time for a ‘baseline CT scan’ of head, neck and chest. Ok. OK! It is a funny old thing, this cancer business until you “know” what the results are. There were no visible signs anything would be found…but…

I went. I was a bit nervous. I was finished in 20 minutes. Then I waited for a day, then another. Until I sent an email: already knowing my surgeon had a huge week but hoping he had a result. He did, I was told on the phone by his lovely practice manager: “ALL CLEAR”. Yay.

That week I also visited my dentist – the person who I convinced to remove the bridge & teeth in April 2017 where cancer was eventually found. He was able to check out all that had happened in the past 9 months and clean my remaining 8 teeth. I have an amazing team caring for me.

The First Week In June 2019.

This week marked the ten years since Professor Chris O’Brien, Head and Neck Cancer Surgeon, died from brain tumours. His legacy is so many people who trained and worked with him at R.P.A. and now at Chris O’Brien Lifehouse. His widow Gail O’Brien said recently that without Chris getting cancer he would not have understood the need for cancer patients to be cared for nor treated as well without his vision for a ‘one stop cancer care’ place. He knew that a specialist hospital -comprehensive cancer centre – would happen but he did not know of course that its obvious name would be his in the title.

On Monday 3 June I attended Lifehouse to hear the ‘stories’ of working with, knowing and loving the man called Chris O’Brien. This was a presentation about his legacy in head and neck cancer and as a patient with #hnc as its shorthand name is on twitter, I learned from those who have treated me and who paid tribute to Chris. In fact my surgeon’s final words of his talk were “there’s a little bit of Chris in everyone’s role”.

Later when I got to say hello again to Gail and to thank her for the work of Chris O’Brien, I said even at my most scared – one day after being told I had cancer – when I walked into Chris O’Brien Lifehouse I felt different. It was not a ‘hospital’ as I knew, it was full of interesting places and spaces and caring people. I felt safe and cared for. And still do. Each time I walk in, I look up at the various images of Chris and others and I am very grateful.

Being An Ambassador For Head & Neck Cancer Awareness with Beyond Five.

In June it’s time to ramp up the Head and Neck cancer awareness as we lead into the last week of July 2019 where World Head and Neck Cancer Day is marked with programs, conferences and more on 27 July 2019.

The colours for Head and Neck cancer world-wide are Maroon/Burgundy and Cream.

 

My #HNC & #B5 Lanyard with my card & Ambassador badge

Beyond Five. 

For Head and Neck cancer patients, family and friends. This is a website and offers lots to help. It continues to grow and change but with no government funding, some donations by companies in related fields and one part-time business manager, a fund-raiser began for them in 2018 called Soup for the Soul. Soup is often a food that patients with head and neck cancer can manage and it is comforting.

Soup for the Soul is already live and I have a Virtual Soup for the Soul page here. More about that as we get closer to World Head and Neck Cancer Day on 27 July.

World Head and Neck Cancer Day: 27 July 2019.

Soup For the Soul Event at Gosford: Central Coast Cancer Centre. Tuesday 23 July 2019.

In June I will be working with the local Head and Neck Cancer Support Group at Gosford to prepare for our Soup For the Soul and Head and Neck Cancer Information and Awareness Day on Tuesday 23 July 2019 at Central Coast Cancer Centre. A year ago I went to the first occasion and met people who also had head and neck cancer and were carers and professionals too. It was the first time I had met anyone else with head and neck cancer. Now the people there have become friends of mine.

From 2018 World Head and Neck Cancer Day & Soup For the Soul at Gosford:

 

This post is to also support others around the world who will be part of the World Head and Neck Cancer Day in 2019.

Do support the charities which help with research and awareness of Head and Neck cancer.

In my case, the link in the story about my virtual Soup for the Soul event will take you directly to donate to Beyond Five’s continuing awareness updates and programs to help those affected by Head and Neck cancers.

Thanks for following my Head and Neck cancer stories. This is the link to where all of my Head and Neck cancer posts are as well as those that have been published elsewhere.

Warmest wishes

Denyse.

 

 

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