Monday 21st September 2020

Women Of Courage Series. #53. Yvonne McClaren. 71/2020.

Women Of Courage Series. #53. Yvonne McClaren. 71/2020. 

A series of blog posts on Denyse Whelan Blogs to be found here from mid-May 2019: Wednesdays: each week until the series concludes in 2020.

Here is the introduction to the series.

Courage is strength in the face of pain or grief. It’s doing something that frightens you. We face situations that demand courage every day. These situations provide us with choices, and the way we respond to those choices determines our future. Dayne Shuda.

Whilst I have not ‘met’ today’s Woman of Courage in real life, as they say, we have most certainly connected by the common (and not ever-welcomed) diagnosis of Head and Neck Cancer. Yvonne, who is 54, has shared her story below via the responses to the questions but to know even more about her and how she is facing life full-on these days, check out her links! Recently she appeared  too as part of the Beyond Five live video segment relating to food preparation and eating for those affected by head and neck cancer, particularly as in Yvonne’s case and others, relating to swallowing.

Dysphagia is the medical term for difficulty in swallowing. This includes problems with sucking, swallowing, drinking, chewing, eating, dribbling saliva, closing lips, or when food or drink goes down the wrong way.

The link to the video is at the end of this post.

Thank you Yvonne for sharing.

 

 What have you faced in your life where you have had to be courageous?

There are a few times in my life where I have had to reinvent myself both professionally and personally. I think my latest challenge with finding a large tumour on my left tonsil has been my greatest challenge.

There have been other life-threatening situations – involving motorbikes, but this was really out of my control. Once diagnosed I responded with ‘silence’ – I went into myself I realise now.

It was a difficult time as I had relocated countries, left my full time job to start a new life and career and had my heart broken all in the space of 8 weeks, then a cancer diagnosis.

Suffice to say, I had little time to grieve anything, it was get on with it and start the treatment. Everything was put on hold in terms of dealing with loss of income, loss of love and in some respects the loss of my beloved father a year earlier.

It’s only now, 18 months after diagnosis, that I am starting to mentally deal with some of the other issues going on in my life at that time.

 

How did this change you in any way? Please outline further if this has been the case.

I had no time to consider anyone or anything else really.

I was on my own and thankfully had my mum still in her own home where I could live whilst going through the treatment.

I had had a sore throat for many, many months and jokingly said to a friend “I think it’s cancer” not really believing it, turns out 6 months later I was right.

How has it changed me?

I listen to my body really closely now, I use to before, but this has made me very aware of what thoughts I have running through my head, what niggle is going on and why… it also made me realise that every second you spend worrying about some insignificant thing is wasted time.

Get on and do it and do it now. Whatever it takes.

I lost the last five kilos I couldn’t budge and then some, so that was great for me, not an ideal weight loss programme but it started me back on my fitness journey 15 kilos lighter.

I now have to learn how to eat again and for a foodie I have found this the most distressing, depressing and difficult side effect.

Food was/ is my world and I have had to retrain and rethink what that looks like now. It also made my fledgling idea about teaching culinary pursuits in a foreign country come to fruition.

 

Is there something you learned from this that you could recommend to help others who need courage?

 

You always have choices, for me, I sat with it and the implications and thought about the worst-case scenario.

I was also told by a well meaning nurse that my cancer treatment had not worked and there was nothing more they could do for me. That sort of puts things in a very stark perspective, it’s humbling and it’s frightening.

It’s also incredibly motivating when I discovered that was not the case.

Learning to manage emotions is something you also can practise and become the master.

I then figured well if that’s as bad as it gets (death / inability to function normally/ disability) then make the most of what you have now.

I also discovered that you lose “friends” along the way, whether they can’t handle the new you, or who you have become or are becoming is too hard for them I don’t know.

I have had to make an entirely new circle of friends and have reacquainted myself with ones I have not had much to do with for years.

What I can say is, you are innately very strong you just don’t know it yet.

 

Do you think you are able to be more courageous now if the life situation calls for it? Why is that?

Yes, I am doing things now that are very much out of my comfort zone, although some would say riding through Vietnam and Laos on the back of a motorbike during a typhoon is getting out of my comfort zone too, but this disease and its side affects have made me realise that everyone has a message and a story.

In many ways this disease has focused my life’s purpose, I had all the scaffolding ready but now I have the ‘reason’ to hoist the flag on top of the scaffolding.

 

Is there any message you would give to others facing a situation where courage could be needed?

Don’t spend time worrying about things that might happen, focus on the now and take it one step at a time.

There is literally  someone else worse off than you, I’d hate to be that person by the way whoever they are, I guess it’s all relative.

 

Do add anything else that you think would help others who read your post. 

 

My job as I see it now is to spend my time doing what I love, what I love is cooking and if I can help others with eating difficulties as a result of HNC and its treatment then that’s what I am going to do.

I come from a family of teachers so it is not surprising to me that ultimately, I want to use my skills to help others.

I have set up The Food Manifesto and Soup hug as a way to bring a community together that suffer from this debilitating side effect.

I like to think of myself as the food curator for dysphagia, the link between your dietitian and your kitchen.

 

What a story of resurgence here. I can say that because I did not know Yvonne until she found the friendly facebook group for Head and Neck Cancer Patients, Carers, Professionals and Families. It is here, too, where I ‘met’ another Woman of Courage Maureen whose story is here.   There is another Woman of Courage called Tara Flannery who shared about her head and neck cancer here.

And this Woman of Courage shared her story. She is Julie McCrossin AM, who is also a Community Ambassador for Beyond Five and is part of the webinar Yvonne appeared in below.

 

Thank you again Yvonne. I am so pleased you are doing all you can to be well and help others too.

This is the penultimate post in the Women of Courage series.

Denyse.

Beyond Five, where I am a Community Ambassador released this video live just before World Head and Neck Cancer Day 2020.

Please take some time to view…and see what Yvonne shares from her kitchen and share with others who may benefit.

Thank you.

Social Media Links for Yvonne:

Blog/Website:  www.thefoodmanifesto.com

Twitter: https://twitter.com/McclarenYvonne

Facebook Page: https://www.facebook.com/sustainablefoodandtravel/

Instagram: https://www.instagram.com/the_food_manifesto/?hl=en

 

On Thursdays I link here for Lovin Life with Leanne and friends.

Copyright © 2020 denysewhelan.com.au – All rights reserved.

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I Want. 33/51 #LifeThisWeek. 66/2020.

I Want. 33/51 #LifeThisWeek. 66/2020.

Last week I wrote this post: Why Did I Start A Blog?

Today I conclude the ‘Why I Blog” series with ‘I Want’ because that is essentially the ‘why’ of blogging for me.

I want:

  1. to connect with readers who visit this blog
  2. to stay relevant as a blogger 
  3. to post topics of interest with a range of my expertise and interest
  4. to contribute to conversations about a range of topics
  5. to be able to learn from others who blog
  6. to know that I am a blogger who is inclusive
  7. to be a blogging friend to those who link up often
  8. to see that my posts on all topics have relevance to my audience
  9. to visit others’ blogs and connect via commenting and support
  10. to continue writing, posting, commenting and sharing my blog posts with others for as long as my work is of interest to others and I am not feeling stale nor bored

It’s been a very big learning curve to be a blogger.

I say that because, for me, it was quite foreign to my world of work in education. Yet, as  determined person who does not eschew hard work, I did my best to blog for what I had found was my way:

Conversational

Informational – based on experience

Photo-centred

Stories shared

Difficult Topics Which May Be Helpful

Creativity and Art

Health & Mindfulness

After a huge move (literally) in our lives, from Sydney to the Central Coast at the beginning of 2015 I set myself a goal. To keep me focussed on “doing this one thing EVERY day”…. I wrote a blog post Every.Single.Day. of 2015. No-one read the posts bar me, until, I re-visited the best way to connect more broadly and that was:

L I N K  U P S.

Hosted by fellow bloggers.

Yay for that. I linked up posts for some time on the Annoyed Thyroid’s link up each weekend , Kylie Purtell’s on a Tuesday and Kirsty Russell on a Monday. Great news! I was meeting up with old friends and new. Right into 2016 and I continued…slightly decreasing my posts and relieved to do so.

I found I needed a good refresher of how this blog looked and made contact with an old Sydney friend, Tanya, who enriched the look and settings of the blog already set by my techie guy and that meant 2016 was even better. I made a commitment to blog almost every day under these topics:

I was having a good time, connecting and meeting new bloggers. Lots had just started blogging, others had left and there was talk of a linky being retired and I asked if I could, perhaps, with permission take over the Mondays with Life This Week. I got a lovely approval from my friend and in September this LINK UP kicked off….and is now #202!

I was also delighted to know there were link ups happening here (co-hosted) on Wednesdays  (sadly for me, this one is finishing up soon) and here on Thursdays. Thank you for your link ups! They are great places of connection.

I Want: to write my memoir.

I had been postponing the idea of writing a memoir of my life until a friend and blogger encouraged me to try writing the chapters in blog-type posts. I did this. Here is the first one. I was not to know it would be a while before the next one!!

I Want: to share awareness of head and neck cancer.

Those who have been here since then and before will know that things changed very fast for my life and priorities when I got a head and neck cancer diagnosis in May 2017. I did think long and hard before pressing publish on this but the love and support which came back to me proved why I love to blog and love my community. The post is here.

I Want: to promote and encourage education- self and others always.

I also told the story of how I like to learn…this was because as a life-long educator I was placed in the role of student at an adult crochet class and because of how poorly my needs were understood I never went back!

I Want: to feel well within myself and portray that confidently.

As an anti-dote to cancer treatments and letting myself be positively impact each day, I began a daily routine some 4 months into my cancer and started to ‘dress with purpose’. This became a photo on instagram each day…and then over time one big boost to my self-confidence when I had no upper teeth and was still in cancer-treatment mode. Here’s what this was about. 

I Want: to have women share their stories of courage.

From May 2019 I introduced a series to the blog for women I invited (or who self-invited) to share their stories: answering 5 questions. This series, Women of Courage continues….I am so pleased this has been a success. Many women have told me what it meant to share.

I Want: to show my appreciation to you, my readers, bloggers and friends. Some even joined me for my 70th birthday morning tea late in 2019. Many of you I may never met but already feel you are good friends. This blogging business is a great way for me, a relatively isolated retiree, to connect.

I Want: to continue blogging. Writing a post up to 2 times a week is good for my health and for my connections. Over time, I expect with fewer Women of Courage stories, my Wednesday posts will be a way to make some changes of direction if that’s what I choose.

This Is Why I Blog!

Thank you all. You have made a difference in my life.

Denyse.

Link Up #202

Life This Week. Link Up #202

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

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

* Feel free to go with the prompt for the week to add your ‘take’ on the prompt. Or not.

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

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

* Add a link back to this blog in your post somewhere, or on your sidebar or let others know somewhere you are linking up to this blog’s Life This Week.

*Posts deemed by me, the owner of the blog & the link-up, to be unsuitable for my audience will be deleted without notice. These may include promotions, advertorials and any that are overly religious or political or in any way offensive  in nature.

* THANK you for linking up today! Next week’s optional prompt: 34/51 Self-Care Stories. #5. 24.8.2020

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Head & Neck Cancer Challenges: FOOD! 31/51#LifeThisWeek. 62/2020.

Head & Neck Cancer Challenges: FOOD! 31/51#LifeThisWeek. 62/2020.

Filming with Beyond Five For Nutritional Videos. See Below.

In the past two weeks for my #LifeThisWeek posts, Head and Neck Cancer has been the focus.

Regular readers know I have had head and neck cancer, and now, cancer-free (fingers crossed) I like to share stories and help others. It was World Head and Neck Cancer Day 2020 last Monday and I wrote about this here. The Monday before, it was an update on head and neck cancer, here.

You know, I hope my readers are never tired/bored of this awful cancer being shared…because it is, sadly, a growing one here and around the world, and many of you have left me know, that if it wasn’t for my posts, you too would not have known.

FOOD!

Love it.

Right?

Of course.

Once I was diagnosed with head and neck cancer back in May 2017 and found out I was having radical and reconstructive surgery to remove HALF of my MOUTH…my inner thoughts were: “how can I eat?” Not well. Not right away and for me, in fact for the 14 months after July 2017 a very challenging way of keeping myself nourished…and perhaps even emotionally sustained by food followed.

Here are posts where I went into more detail…and some images I share. From then.

Eating After Gum Surgery Part One.

Eating After Gum Surgery Part Two.

 

Eating with No Teeth Head & Neck Cancer

 

My First Year With Teeth

 

FOOD as Nutrition. It Heals and Sustains Head and Neck Cancer Patients.

I have had an interesting relationship with food to be honest. However, I will just say, I did eat reasonably well, but I also used food to comfort and be ‘kind’ to myself. Ring any bells for you?

That aside, going into Chris O’Brien Lifehouse on 6th July 2017 to know my mouth and ability to eat/feed/nourish myself was changing forever. In the first couple of days post big surgery I was in ICU and I recall the person I now know as Jacqueline – Dietitian come by and then, once I was in my room, she spent some more time with me as I moved through more of the (dreaded, shudder, feed via the naso-gastric tube…to W A T E R…oh happy day with me and the Speech Pathologist Emma.

Here’s the thing: Head and Neck cancer patients MUST maintain their weight. Stay well. Eat as well as they can. This ‘diet’ from the past Denyse found that hard initially. However, when I told my head and neck surgeon I had put on 5kg since getting my upper prosthesis 7 months early he said “GOOD”

Jacqueline did her best to educate me about keeping up high quality protein, even if it was via a commercial mix once I was home. I spoke to her of my treats (lemon syrup cupcakes) I had made and froze before surgery and she told me the words I loved hearing:

VALUE Add to foods. So, have your little cupcake warmed through and add full fat dairy topping: icecream custard, yoghurt whatever is your preference.

I admit I ended up working on how to feed myself food I thought a mouth with much added skin, stitches on top and 8 teeth on the bottom could manage. I am creative. I did come up with some good tasty foods. By the end of 14 months of having those foods, until I had some teeth added as a prosthesis, I admit, I did not want to eat any more like them. That’s for another day.

In 3 weeks time it will be 2 years since I have had upper teeth in the form of a prosthesis and that is amazing. I am also a Community Ambassador for Beyond Five, and earlier in 2020 I was invited to be interviewed about my eating with a head and neck cancer diagnosis and what I have learned.

 

 

https://f.io/F1Z5QQpT

The remainder of the videos can be found here on Beyond Five.

https://www.beyondfive.org.au/life-after-cancer/diet-and-nutrition/nutrition-videos

 

Thank you to all at Beyond Five and the former patients and carers I met as well as the Allied Health Professionals. It was something I was initially reluctant to do, and in the end “did it in one take and a thumbs up”.

Have you ever been filmed for viewing on TV or on-line?

Denyse.

Link Up #200

Life This Week. Link Up #200

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

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

* Feel free to go with the prompt for the week to add your ‘take’ on the prompt. Or not.

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

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

* Add a link back to this blog in your post somewhere, or on your sidebar or let others know somewhere you are linking up to this blog’s Life This Week.

*Posts deemed by me, the owner of the blog & the link-up, to be unsuitable for my audience will be deleted without notice. These may include promotions, advertorials and any that are overly religious or political or in any way offensive  in nature.

* THANK you for linking up today! Next week’s optional prompt: 32/51 Why Did I? 10.8.2020

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Share Your Snaps #6 #WHNCD. 30/51#LifeThisWeek. 60/2020.

Share Your Snaps #6 #WHNCD. 30/51#LifeThisWeek. 60/2020.

Devoting today’s Share Your Snaps to: World Head and Neck Cancer Day 2020. It’s today.

Sharing the stories is part of what I am able to do here on the blog and in other social media but they are not all “my” stories. Some of course, belong to others.

The photos here cover a range of people who have been given a head and neck cancer diagnosis. Some may have had surgery, others radiation and chemo. Some a mix of all. I had surgery only.

 

Head and Neck cancer not well-known as a cancer, even by G.P.s and some specialists. The work of Beyond Five continues to offer up to date information for patients, families, carers and professionals. My work as a Community Ambassador is to share awareness of the role of Beyond Five.

Today: WHNCD,  I pay tribute to the head and neck cancer community around me and further afield.

I admit I did my first year of HNC (as it’s also known) alone until I was invited to be part of the Central Coast Head and Neck Cancer Support Group.

 

  • Sharing the stories…in pictures and some words, this World Head and Neck Cancer Day.

 

  • Women of Courage Who Are Head & Neck Cancer Survivors Shared Their Stories Here:
  • Maureen Jensen from New Zealand. Story Here.
  • Tara Flannery from Australia. Story Here.
  • Julie McCrossin from Australia. Story Here.

 

  • May there be greater funding for research into HNC AND supportive grants to Beyond Five so that more information can be shared via the website, webinars and “in real life” events if COVID ever lets that happen again.

 

  • Last week’s post was more detailed about head and neck cancer and its signs and more. In the coming weeks, as of today, Julie McCrossin AM and professional leaders in the field relating to head and neck cancer will be sharing on-line here. This on-line event replaces the Forum to be held last June which was cancelled due to COVID.

 

  • I am particularly grateful to be part of a New Zealand-based Head and Neck Cancer Support Group on Facebook. Started a while back, it is a friendly, reassuring place to be to ask some questions, find some support and to know you ‘are not the only one’ with head and neck cancer…even if it is still pretty rare. Find the group here. You will need to answer some questions first before acceptance.

 

  • To you, my blogging community, I say thank you over and over for your interest and support in this ‘hnc’ thing of mine from when I was diagnosed. I am incredibly grateful to be well…but also to be well-supported here. The link to my Head and Neck cancer posts is here. I am told this has been useful for some patients and families to read. Makes me grateful to use my blog for this purpose too.

I still have another 2 years of cancer checks to go …the next is in September. I never take it for granted that my version of head and neck cancer has gone forever.

Denyse.

Link Up #199.

Life This Week. Link Up #199.

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

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

* Feel free to go with the prompt for the week to add your ‘take’ on the prompt. Or not.

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

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

* Add a link back to this blog in your post somewhere, or on your sidebar or let others know somewhere you are linking up to this blog’s Life This Week.

*Posts deemed by me, the owner of the blog & the link-up, to be unsuitable for my audience will be deleted without notice. These may include promotions, advertorials and any that are overly religious or political or in any way offensive  in nature.

* THANK you for linking up today! Next week’s optional prompt: 31/51 Food. 3.8.2020

You are invited to the Inlinkz link party!

Click here to enter


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World Head & Neck Cancer Day 2020. 29/51 #LifeThisWeek. 58/2020.

World Head & Neck Cancer Day 2020. 29/51 #LifeThisWeek. 58/2020.

World Head and Neck Cancer Day is coming soon. On Monday 27.7.2020.

In this week leading up to the day, I am sharing more about head and neck cancer.

From Beyond Five, this information:

There is currently NO screening test for Head and Neck Cancer.

 

What Are Some of the Symptoms?

Here is a link to the page on Beyond Five to share more on symptoms.

*sore tongue, mouth ulcer(s), red or white patches in the mouth

*neck lump

*pain in the throat

*ear pain

*hoarse voice

*painful or difficulty in swallowing

*blocked nose on one side and/or bloody discharge

IF you have any ONE symptom for THREE weeks, seek medical advice.

 

How is head and neck cancer awareness and information shared?

In a world unaffected  by COVID-19, this coming week  would have been a time for gathering together for fundraising and awareness raising in our country, and nearby neighbours, New Zealand. Sadly, this is not possible in most cases.

Last year, we were able to do this to raise awareness at Central Coast Cancer Centre, Gosford Hospital.

We are moving toward the on-line spaces more, by necessity and now design and hope you can find some help, information and support there too.

On Sunday 26 July 2020, Beyond Five, where I am a Community Ambassador, is holding a Live Event. 1 p.m. AEST. The link to join in this great initiative is here. It’s one of teaching and sharing….soups and more and is hosted by fellow Ambassador Julie McCrossin AM, featuring these people, including South Australian HNC patient Yvonne McLaren and Founder of The Food Manifesto, to help others with eating issues following HNC and those with swallowing challenges. Check this out:

 

Why July is a strong memory for me.

July IS Head and Neck Cancer Awareness Month.

I did not know that nor anything about head and neck cancer till my diagnosis in May 2017. My memories are S T R O N G each July as it reminds me of what happened inside my mouth, outside on my leg and then more.

Just to recap…I share my memories of going into surgery. 6th July 2017.

 

In ICU: where I stayed for 3 nights after surgery on 6 July 2017.

  • July is my “big month” of memories….of going into Chris O’Brien Lifehouse at 6.00 a.m. on Thursday 6.7.2017 with my husband and then having been checked & readied for surgery & meeting the wonderful anaesthetist Murray who reassured Bernard he would be in contact with him throughout the long day ahead….I got to say goodbye and was eventually wheeled to theatreS!
  • Oh, your surgery I was told, requires 2 theatres because there is a team of around 24 for your very complex & long surgery. Close to 7.30 a.m. by the time I got inside..but wait, there is more..
  • Whilst getting my mind around that, and the fact that when I woke (fingers 🤞) I would have had half of my mouth removed….I recall one of the team, actually I think it was Murray bringing in the corrected surgical procedure (originally it was to be remove fibula and skin/flesh from left, but blood supply was found after CT to be better in right) for me to sign. ✔️
  • Murray & his assistant were incredibly busy readying my body for the big surgery by placing monitors and more on me and tapping into 3 parts of me to lay tubes (I don’t know the terms) in left ankle, left & right arms/hands. Why? I had to ask. “Well, Denyse, is one spot fails or we need to move to another, we are ready, we don’t have to muck around in theatre”…

Now, I have but one memory to recall….as I was wheeled into theatre, I glanced to the left where there were teams of people dressed in scrubs & I admit I was searching for a familiar face….and there he was, my prosthodontist from Westmead, looked up and across at me. This man was the one who would, as the day progressed, use all his measurements and findings from my visits in May to “take my fibula after removal” and add abutments to it and ready it for placement inside my mouth.

Well. The memories ended for me.

  • I am told my surgery needed that many people because one team was the one operation on my right leg to harvest the bone, skin and flesh to go inside my mouth.
  • My professor led the team working inside my mouth, and entering the neck area for adding the blood supply from my leg’s flesh into my mouth to form the roof of it. All of my upper mouth was removed…even the last of my natural teeth up there…all 3!
  • There were samples from my neck taken and sent to pathology during the surgery. All were OK so “only” surgery was within mouth and under the lip.
  • My husband told me he was contacted as promised through the day. The day that saw my surgeons and team work for 11 hours to give me the best chance possible to eat, drink, smile and speak again.

By around 8.30 p.m. I was in I.C.U. as I had been told would happen. My body felt different. My left leg was in something that kept moving to ensure circulation & my right was Ok but encased in bandages and drains were coming from large wound area where skin had been harvested. I had an oxygen mask on, a nasogastric tube was inserted and I was pretty sore but not in huge amounts of pain. I barely used the pain pump and by the next day they said, we will take it away. Fine. However, I remained tired. But very pleased to NOT have a tracheostomy ( told it might happen) and could utter a few words. I also was put on a nebuliser for a long time and had oxygen in my nose. The nurses checked me often for drains & radiographer with a portable X-ray machine came in to see nasogastric tube was in ok.

That was my 6 July 2017.

Blogging my Head and Neck Cancer from diagnosis onwards to help me put in down and to help others too. On my blog- denysewhelan.com.au Here is the link to all the head and neck cancer posts.

July 2018– I was about 6 weeks away from have my upper prosthesis put in. Before then, I had 3 other day surgeries to give my mouth some bulk & ability to have the prosthesis attached to the jaw made from my leg. Those surgeries were Nov 2017, Feb 2018, May 2018. Joining local Central Coast HNC support group.

July 2019– Going well. Regular check ups have been good & there is no cancer…found anywhere. May 2019 check. Helping raise awareness of Head & Neck Cancer as an Ambassador for Beyond Five.

July 2020– Continuing to do well. Before Covid restrictions I saw my Prosthodontist in February who said my prosthesis care is excellent and saw my head and neck cancer surgeon in March who said “see you in 6 months”…with a CT scan beforehand to ensure all OK…still.

This is why July means a lot to me…and I share the story of my HNC because it might be rare but there is a need to notice symptoms of HNC and the onus can often be on us, the patient. Beyond Five’s regular updates and professionally reviewed and verified information is my go-to site and that is why I recommend it and work as a volunteer.

 

From Beyond Five’s Website.

“Who Are We?”

There are many people who are part of the organisation called Beyond Five. Professionals in the field are prevalent. The professor I refer to as ‘my surgeon’ is the chairman and one of the founders. With Professor Jonathan Clark AM.

Nadia Rosin. A communications and project management professional with over 20 years of experience in health promotion. Since 2016 I have had the privilege of working with a passionate team of Head and Neck Cancer clinicians, patients, family members and carers to launch Beyond Five, the first Australian not-for-profit to provide education and support to people affected by Head and Neck Cancer.

Experienced in strategic planning and communications, stakeholder engagement, fundraising, project and operational management. I am passionate about collaborating with key stakeholders to provide evidence-based information and support to patients, carers and health care professionals, raising awareness of Head and Neck Cancer in Australia and advocating for Head and Neck Cancer to form part of the public sector funding and health policy agenda.

Julie McCrossin is a broadcaster and journalist. In 2013 she was treated for oropharyngeal cancer and is now one of Australia’s leading head and neck cancer advocates. Julie is Beyond Five’s inaugural Ambassador. Her story was featured here as a Woman of Courage recently.

Denyse Whelan is a retired K-6 NSW School Principal and has also taught English as a Second Language. Denyse was treated in Sydney for squamous cancer in her top gums in 2017 and is passionate about sharing her ‘new normal’ to help others.

Marty Doyle worked for 36 years in the media as a radio announcer and TV presenter and is now a personal and executive coach. In 2004 he was treated in Brisbane for metastatic squamous cell carcinoma with cancer of unknown primary and has been a passionate advocate for head and neck cancer ever since.

Meeting Marty Doyle – at HNC support group.

Mike George had a total laryngectomy in 2017. Mike is well known to the laryngectomy community in Victoria and is passionate about securing Heat and Moisture Exchanger (HME) funding across Australia and educating emergency services and medical professionals about how to resuscitate a laryngectomee in an emergency.

Mike shares his story here.

May you all stay well.

Denyse.

Link Up #198.

Life This Week. Link Up #198.

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

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

* Feel free to go with the prompt for the week to add your ‘take’ on the prompt. Or not.

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

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

* Add a link back to this blog in your post somewhere, or on your sidebar or let others know somewhere you are linking up to this blog’s Life This Week.

*Posts deemed by me, the owner of the blog & the link-up, to be unsuitable for my audience will be deleted without notice. These may include promotions, advertorials and any that are overly religious or political or in any way offensive  in nature.

* THANK you for linking up today! Next week’s optional prompt: Share Your Snaps #6. 27.7.2020.

You are invited to the Inlinkz link party!

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Women Of Courage Series. #48. Julie McCrossin AM. 57/2020.

Women Of Courage Series. #48. Julie McCrossin AM. 57/2020.

 

A series of blog posts on Denyse Whelan Blogs to be found here from mid-May 2019: Wednesdays: each week until the series concludes in 2020.

Here is the introduction to the series.

Courage is strength in the face of pain or grief. It’s doing something that frightens you. We face situations that demand courage every day. These situations provide us with choices, and the way we respond to those choices determines our future. Dayne Shuda.

Julie McCrossin, in her 60s, describes herself in these few words on twitter: ‘Broadcaster and Head & Neck Cancer survivor. Dog lover.’

Having the privilege of meeting Julie in late 2018 and then continuing to be part of conversations and more on-line with Julie, I can add friendly, inclusive and passionate…about a lot actually. But this is Julie’s story to tell.

Here we are together with Nadia Rosin, the CEO of Beyond Five, where Julie and I are Community Ambassadors. Julie, as a professional speaker, MC and broadcaster is host on behalf of Beyond Five on this series of podcasts found here, made by Beyond Five, for head and neck cancer patients, carers, families and professionals.

I have deliberately added Julie’s story in the days leading up to World Head and Neck Cancer Day, 27.7.2020. Julie’s tireless work in a range of different agencies helping those with head and neck cancer, their carers and supporters is a passion. She is also host of Cancer Council podcasts on a range of topics related to all cancers. This link to them is here. She does, however, have more in her life….and recently added ‘grandmother’ to her name. That too is another story for her to share.

 

What have you faced in your life where you have had to be courageous?

The Cambridge Dictionary defines courage as “the ability to control your fear in a dangerous or difficult situation.”

My life has given me several opportunities to exercise  this skill. As a bushwalker with a women’s trek training group called Wild Women on Top, I climbed a high rock formation in a national park. To reach the summit I had to clamber across a large boulder above a very large, life threatening drop to the ground below. A trek leader I trusted talked me through the process successfully, but I can still recall the heart-racing fear I felt crossing the boulder and then returning to cross it again on the way back.

A very different kind of sustained courage was required to support my late mother who experienced serious mental health issues over many years. It took courage to help her in countless encounters with health professionals who, all too often, lacked empathy or training in dealing with a mentally unwell person. I came to understand that anxiety is another word for fear.

It took all the courage I had as a daughter to front up repeatedly to the accident and emergency departments of hospitals, after receiving a call from my mother or a doctor, to try to help solve an insoluble problem.

However, the most distressing challenge I have had to face, that required all the courage I could muster, was the experience of receiving radiation treatment for head and neck cancer in 2013.
The cancer was in my tongue, tonsils and throat. I had to receive 30 consecutive days of radiation to this area of my body, plus weekly chemotherapy.
The radiation therapy saved my life and I will be forever grateful for it.
The challenge was that I had to wear a tightly moulded mask over my head and shoulders to hold me rigidly in position, as I lay on my back, while the radiation machine took 20 minutes each day to deliver the targeted beam to the tumours.
I discovered that I was highly claustrophobic. I was given mild sedation and I listened to music to help me.
But fronting up every day to be bolted down by the head and lie still while the machine did its job was the hardest thing I have every done.
Of course, I was also facing the fear of death as I had stage four cancer.

 

How did this change you in any way? Please outline further if this has been the case.

I was traumatised by my cancer treatment.

I was shocked by the realisation I might die and frightened by the physical restraint of the mask.

I wept after the first of my 30 radiation treatments.

I then froze and I have struggled to cry ever since that day.

I have been unable to feel the relief of weeping for over seven years.

Do I appreciate life more keenly? Yes.

Do I value time with my partner, family and friends with a new intensity? Most definitely.

But to be honest with you, I felt life was precious before I had cancer and I have always loved the people close to me.

I think cancer has taken much more from me than it has given.

 

Is there something you learned from this that you could recommend to help others who need courage?

I think I was sustained during my cancer treatment and recovery by the courage and love of my partner, children and close friends.

I felt their life force nurture me as the cancer treatment drained my own life energy.

So the lesson I learnt was the value of showing my vulnerability and accepting help.

I did not need to face the challenge alone.

It wasn’t only my courage that I relied on.

It was a team effort.

I believe that this was the experience of my father as a pilot with a crew in World War Two.

He survived as a Pathfinder pilot in Bomber Command.

It was a frightening job with a very low survival rate.

I thought of my Dad and his air crew as I received my radiation treatment.

The courage I showed was underpinned by the memory of my father’s bravery and the love of my family and friends.

 

Do you think you are able to be more courageous now if the life situation calls for it? Why is that?

I honestly don’t know.

I fear recurrence of my cancer, as most survivors do.

I know I have a fierce desire to live.

I trust I will accept my fate and accept any recommended treatment if the cancer comes back.

I doubt I will be more courageous because now I know how tough treatment can be.

So I think I will be scared and anxious but I will do everything I can do to survive for the sake of the people who love me and myself.

 

Is there any message you would give to others facing a situation where courage could be needed?

Ask for help from people you trust.

If you are alone, let professional people know and ask them to connect you to volunteer organisations who can provide support.

We don’t need to face life’s challenges alone.

 

Thank you Julie for sharing what I know has been an incredibly challenging time when you went through your head and neck cancer treatment. Julie’s passion for connecting and helping others is seen in her on-line forum, organised jointly with many professionals including specialists in head and neck cancer and allied professionals. which she is gathering to be launched for World Head and Neck Cancer Day on Monday 27.7.2020.

I too, have had a very small part to play and my words to the forum about the psychological aspects of having a head and neck cancer diagnosis and overcoming some of my challenges will be there somewhere.

This short video also adds more from A/Prof Richard Gallagher.

Families & friends of head & neck cancer patients are vital for our survival & quality of life. 2020 Video Series is for families too. Surgeon A/Prof Richard Gallagher explains. Videos available from 27 July World Head & Neck Cancer Day. #HNC #WHNCD

Posted by Julie Elizabeth McCrossin on Monday, 13 July 2020

 

Once more, thank you so much Julie for sharing the words to help others understand how courage has helped you in your life.

Denyse.

Follow Julie on twitter here:

Julie’s Facebook Page For Head and Neck Cancer is here.

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.

Copyright © 2020 denysewhelan.com.au – All rights reserved.

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The Value Of A Smile. 46.1./2020.

The Value Of A Smile. 46.1./2020.

I’ve been contemplating the ways in which smiling can improve my/our health.

Maybe too, because of being socially isolated and  when being out keeping our distance, I have noted that when engaging with people a smile cuts through any communication to be gain a positive response often with a smile back!

Have you noticed this too?

Regular readers here will know I lost my smile for a long time when the top half of my mouth (and some of my top lip too) was removed because of head and neck cancer, and that I really, really missed my smile!

Recovering from Cancer Surgery 2017. Smiling as Best I Could.

Interesting to get to know my needs for social inclusion were/are based on my ability to connect with my smile.

I think it is fascinating that of the three things I lost for a while after the July 2017 surgery: ability to eat & drink, talking clearly and smiling…that I found

S M I L I N G was what I needed to do most.

There is science in this too!

Recently I read this:

We shall never know all the good that a simple smile can do. Peace begins with a smile.

Mother Theresa.

Years ago, I was seeing a psychiatrist for some issues and he talked of the fake it till you make it smile. It seemed silly to me then, but apparently there IS something to this.

I can share this practice , from my experiences of meditation and being mindful, of not allowing myself to retreat or resist what I am not liking. I still need to remember this. In fact, I ask myself ‘what am I afraid to admit, or do or be’?

I need to be in the moment. The only moment as that’s all I have.

Yet, the physical act of helping my body make a smile, works. It’s like a circuit breaker. I can look in the mirror and smile. Not always genuinely but it changes things.

Further advice in troubled times:

  • life the corners of your mouth with your fingers, literally putting a smile on your face.

  • let the smile remind you that acceptance is more powerful than resistance.

  • breathe deeply, then exhale slowly

  • invite yourself to be curious about whatever set of circumstances initiated your resistance.

           Ashley Davis Bush: The Little Book of Inner Peace.

I do engage as much as I can with feeling gratitude each day (and made a promise to do this every day in 2020). Smiling reminds me of how grateful I am for my health, and that even though my top lip is shrinking back somewhat, smiling is one very sound exercise as is connecting with the people around me.

I made my first vlog…I am not sure that is what I call it…but I now have the ability to make mini-videos at home and sorted my channel on You Tube to be able to do so. Yes, the ending is a bit unproffesh but the message is mine!

Take care, people….and do remember to smile.

Denyse.

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Head & Neck Cancer: My Life Now: 3 Years On. 41.1/2020.

Head & Neck Cancer: My Life Now: 3 Years On. 41.1/2020.

In April 2017, after much searching for “why” my upper gums and palate were so sore, swollen and inflamed, I insisted that my dentist “take the bridge and teeth out, please as…I need to know what is under it.” That was done after almost 3 years of “wondering why” and being told many different reasons by dentists that it was most likely candida and “you are not keeping under the bridge clean enough. Sigh. This story can be found here along with many as I have journaled the Head and Neck Cancer story here on the blog.

On 17 May 2017, after the removal of bridge and teeth, with worsening gum conditions, I received what was, in many ways, the answer I feared or at least had considered over the past year or  more before. Yes, it is CANCER and it is called Squamous Cell Carcinoma and off I was sent to the BEST place and people ever for more diagnosis, subsequent surgeries and much much more.

 

Summing up each year as a head and neck cancer patient with a rare diagnosis. 

2017.

May & June: Meeting my surgeons at Chris O’Brien Lifehouse. Examinations, testing and discussion on maxillectomy and using part of my leg. Visits to Westmead Oral Sciences for future mouth reconstruction preparation. Waiting. Testing. Being very concerned but at least I had the answer!

July: 7 weeks after diagnosis the major surgery of 11 hours. ICU and then recovery in single room at Chris O’Brien Lifehouse. This was for 10 days. Learned that I recover well and that I could speak (hallelujah) and eventually swallow water with no problems. Home. Learning to live much differently. Back for checkups: particularly of my leg which had donated skin and flesh.

August: September: October: at home recovery, lots of community nurse visits, learning how for eat differently and prepare food for myself. Independent walking then became driving the car again Back for a post-op check and to hear what was next.

November: On the day the same sex marriage result was announced I went into surgery for more skin to be added inside my mouth: taken from my thigh. It was all part of hopefully allowing my mouth to eventually settle to take a prosthesis of teeth.

It was announced I would become a Community Ambassador for Beyond Five.

December: watching progress of mouth and sending photos of the inside to my lovely Professor Clark for him to see it was going OK. Always relieved to hear back ‘yes.’

2018.

January: continue as for December.

February: third surgery. Adding a stent into the top part of my mouth to allow skin to stretch and eventually be able to fit in the prosthesis of teeth. Alas, this failed as the stent was removed too fast by my prosthodontic team much to my professor’s dismay and…..

March: I got the news a fourth surgery would be happening. Initially not happy at all, but realised it was inevitable…and my mouth was particularly challenging as they try so hard to work with ‘what is’ to have me look as much as possible as I did post any head and neck surgeries.

April: more time for me to see the prosthodontist to check the healing mouth and for my team to consider what would be next.

May: almost 12 months from diagnosis, back to COBLH as I call it for short….and a much bigger stent added in another 2+ hour surgery. Wow. Thigh gave up more skin for inside my upper lip.

June. July: So many drives back and forth to Sydney for prosthodontic work: measuring, practising with models of prosthesis with the eventual promise of teeth up top…..

World Head & Neck Cancer Day: July 2018. Held a virtual Soup for the Soul a fundraiser for Beyond Five and met the Central Coast Head and Neck Cancer Support Group at Gosford and became a member of this group.

21 August; Yes. Upper prosthesis fixed into the abutments and I had a smile back (a good one too, thank you team) after 14 months.

From then until next year, 2019, I had a considerable number of visits back to Westmead with adjustments and I learned ‘how to eat’ with teeth that were nothing like how my mouth had been post-cancer. More on the page as linked before.

2019.

January. An unexpected visit to COBLH for my head and neck surgeon to examine ‘extra skin’ which had begin to grow near the abutments on one side. This visit, as I found out directly was to ensure “cancer had not returned”. OH. It had not but it threw me a bit because I had not even given that a thought. This was when I realised CANCER is never far away from our thoughts.

February, March, April: some visits to both professionals in my team. Making adjustments and checking progress of skin inside my mouth. I admit I was often nervous of outcomes as my mouth was pretty sore most of the time. No-one could tell me ‘how long’ that would last but I continued to be reassured by my prosthodontist in particular “everything looks OK” “you are doing a good job keeping the area clean.”

May: 2 years since diagnosis and I was proud to have made it. I was incredibly grateful to my body for healing well and to all who cared for me and in particular to my patient and good listener husband.

End May: CT scan showed “all clear”

June: Visits became more spread out to the surgeon and prosthodontist and I navigated using these teeth to eat. It was and is a challenge. My right leg had some changes from the loss of the fibula as my right foot became affected with gait. But all OK really.

July: Continued visits to Westmead and put my energies into blogging about Head and Neck Cancer, interviewing a patient for Beyond Five and being part of World Head and Neck Cancer Day at Gosford Cancer Centre.

August, September, October, November, December. Regular check ups and visits to COBLH and Westmead but longer intervals. In October it was raised by my surgeon that a possible fifth surgery could be planned if mouth needed it but he had no real plans for it at that stage. Continuing to help raise awareness of head and neck cancer in various forms via social media. In November I celebrated my 70th Birthday!

 

2020.

January: continuing own care and progress at home.

February: visit to the prosthodontist where he was pleased with how upper gums were looking. I admitted to him my concern there may be need for further surgery as outlined by my surgeon and he took photos and would confer with him as needed. Took part in filming for Beyond Five series of nutrition videos for head and neck patients, carers and professionals.

Early March: Saw my head and neck surgeon who was delighted with my progress, no surgery needed and I remain “his poster girl for recovery”…see you in 6 months!! I was a guest speaker at a Charity Ball held by 4 doctors at Avoca to raise awareness of head and neck cancer and aid the work of Beyond Five with a generous donation.

And then COVID-19 stopped us all in our tracks for quite some time.

End May: as I write. My prosthodontist should have seen me for a check this coming week but Westmead is not open for regular visits yet. I am not concerned as my mouth is OK. I am not due to see my head and neck surgeon till September. I am going to my dentist here (the one where we got the diagnosis sorted!) in early June as he ensures the 8 teeth I have remain in good order.

Record Keeping: For Me!
Visits to Prof Jonathan Clark: Chris O’Brien Lifehouse. 2 hours each way by car. M1.
2017
Diagnosis: 17.5.17.
18.5.17 (diagnosis: surgery plan w A/Prof too)
6.7.17 (surgery #1 in COBLH)
27.717 (post op: A/Prof)

10.10.17 (cancer check)
15.11.17 (surgery #2: day. Down & home same day)
20.11.17 (post op)
5.12.17 (post op St George)

2018
7.2.18 (surgery #3: day. Stayed night before)
14.2.18 (post op St George)
1.5.18 (pre surgery #4)
16.5.18 (surgery #4 day. Stayed n/b)
2.10.18 (cancer check & upper prosthesis)
– long time between checks as I was seeing Prosthodontist a lot!

2019
8.1.19 extra cancer check: skin growing ok
19.2.19 cancer check
21.5.19 cancer check & CT done. All clear.
24.9.19 cancer check

2020
3.3.20 cancer check.

17 total to date.

Next due: September 2020.

Visits to Westmead Prosthodontist. 2 hours each way by car. M1.

2017  24.5.17 (pre surgery #1)30.5.17 6.11.17 (pre surgery #2)

2018  23.2.18 (post surgery #3) 1.3.18  7.3.18  15.3.18

22.3.18 28.3.18 12.4.18  28.5.18 (post surgery #4) 31.5.18

12.6.18  15.6.18  18.6.18  25.6.1  3.7.18   10.7.18   16.7.18

23.7.18   6.8.18   9.8.18

21.8.18: Upper Prosthesis Issued

28.8.18  10.9.18   25.9.18 8.10.18 (lower denture prep)  25.10.18

5.11.18  15.11.18  19.11.18  27.11.18   11.12.18

2019  21.1.19 (unscrewed UP)  4.3.19

13.5.19  16.7.19  5.8.19

17.9.19    25.11.19

2020 17.2.20  41 to date  Due: 25.5.20 (postponed due to COVID

What is life like for me now as a head and neck cancer patient…over 3 years later?

  • I think about my cancer less
  • I maintain my cleaning of the mouth more willingly and never miss it because I would hate the spoil all that hard work!
  • I accept that whilst I have ‘teeth’ on top that look fine, they do not function nearly as well as natural teeth.
  • I know how to allow for that more these days in terms of food choices.
  • I am more grateful than ever to have had such a cancer experience so that I can share, help and be part of a community which may need assistance from a patient like me
  • I am less fearful of cancer’s return but I am never complacent
  • I do my best to help others who may find my story helpful
  • I blog less than those initial 2 years but maintain the updates about head and neck cancer as it is for me
  • I connect with others on-line to encourage, share and offer support where it may be needed
  • I like to help where I can to keep the messages of head and neck cancer current
  • I do this via my social media and re-sharing words, links and information from Beyond Five
  • I maintain social media connections via a facebook group from New Zealand for head and neck cancer patients, carers and families
  • I am willing to share my story for others: meeting them, making a speech and connecting via emails and on-line

However, I am less the ‘head and neck cancer patient’ these days.

I am more Denyse, who is a retired K-6 principal and teacher, wife to B, mother to K & M, and Grandma to eight wonderful grandchildren. I remain passionate about education: of the self, and of kids…and support on-going education at any age. I love to connect via my blog, meet up for a coffee and cake, take photos to share on instagram, make art in all kinds of ways….and get outside to be “oh so thankful” to be here…to be well….and to share!

Denyse.

23 May 2020.

Written, in part,  in readiness for World Head and Neck Cancer Day in July 2020. Events this year will be virtual and I am sure, I will be sharing more as time goes on. For now:

 

 

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