Saturday 25th September 2021

Questions. 31/51. #LifeThisWeek 94/2021.

Questions. 31/51. #LifeThisWeek 94/2021.

I am a question-asker.

I tend to ask a lot.

I am also an answer giver too.

However, I remain naturally curious and so, as a result have asked a LOT of questions over my 71 years on earth.

When I was seen by my head and neck cancer surgeons on 18 May 2017 I may not have had many questions because to be honest I was in shock as I had only learned of the diagnosis,the day before.

So, in the weeks that followed I found I did have specific questions, that I did not want to try to navigate on-line and my husband and GP did not have knowledge, so one of the kind surgeons answered them for me after I sent an enquiry to my head and neck surgeon’s office. His words helped me so much and reduced my worries.

I also found out then:

Do NOT be afraid to ask questions. There are no SILLY questions.

It’s now over 4 years since I was that very worried woman in a clinic room at Chris O’Brien Lifehouse, where the head and neck team met us: me the patient with B my (now) carer.

August 2017

I have, over the years, also had the help of a psychologist to get my somewhat faulty  thinking and ideas sorted. I was not a 100% emotionally well in the years 2014 into early 2017 but I am also a problem solver. However this was one problem I could not solve by thinking my way through. I needed to both accept the emotional upsets I had and why along with the BIG life transitions I was coming to terms with. I have written about some of those experiences in past posts.

Before I continue. Last year, this head and neck surgeon from Adelaide tweeted his explanation for cancer. I have always felt there is an element of ‘blame’ attached to some cancers. These words resonated. Thank you @guylrees.

 

This year I was sent a copy of a book which I said I would review. There was a throwaway line by me when I saw its title via social media when I said to the publisher, send me a copy and I will review it. Exisle Publications were serious. They did.

I have read the book by Dr Toni Lindsay and it answered even more questions for me.

  • Questions I did not know I even wanted answers for.
  • That is the thing about a cancer diagnosis, sometimes it takes a long time to determine what you need or want to know next.
  • This then is my summing up of the book: from a Head and Neck Cancer Patient At Chris O’Brien Lifehouse.

I have never met Dr Toni Lindsay but I do know of the many other professional services that are offered where I had my surgeries.

 

The Cancer Companion: How to navigate your way from diagnosis to treatment and beyond by Dr Toni Lindsay.

My Views As a Cancer Patient.

  • This is a well-written and set out guide, and its name suggests it can accompany a person (cancer patient, family member, carer) throughout the cancer experience.
  • It’s easy to read, and divided into sections:

Part One: On Treatment.

  • And then it was cancer
  • Normal
  • Finding your purpose and meaning. Part 1.
  • Preparing the treatment and having a plan
  • Chemotherapy
  • Radiotherapy
  • Surgery

I identified strongly with ‘hearing you have cancer’ as it still comes as a shock even though I had guessed. Of course, for me, like all, there were fears and worries. Lots of days when I know I would be doing something, and then it would hit me like a punch. “I have cancer”.

So, what I got from this part, as someone who remembers how it was, is that all is perfectly within an expectation as a newly- diagnosed patient.

Having a plan helped me but the plan often came in the form of a check list from me, to prepare for trips to Sydney where I would need to have surgeries, treatments at the prosthodontist and for the first year, my husband would need to drive me and stay somewhere close by while I was in hospital.

Even though we no longer lived in Sydney where everything I needed for my on-going treatment, we felt fine with the drive, and sometimes a stay overnight. My husband bore the brunt of times waiting…sometimes visiting our family, other times going for long drives until he heard he could pick me up.

We are also fully retired (aged over 70) and so making a plan was relatively easy as we did not have to take work and family priorities into account. There is quite a bit in this part for carers too.

Part Two: Off Treatment.

  • Finishing treatment
  • What if it comes back?
  • Finding your purpose and meaning. Part 2.
  • Why is everyone behaving like I am back to normal?

My reactions to what I read here were as if Dr Lindsay was in my head!

It did help ‘normalise’ my thinking and my progress.

For that I was grateful to have confirmation from someone professional.

I have a husband who is a trained counsellor and his help was good in that he could sometimes ‘calm my farm’ as they say when my emotions when a bit awry.

I am now, almost 100% able to do this for myself.

Ah. The advantages of time passing and experience as well as cancer free results at surveillance visits.

 

Part Three: Living With Advanced Cancer.

  • Living with advanced cancer
  • Finding your purpose and meaning. Part 3.
  • Planning and decision-making (even if you don’t need it!)

I read this section with feelings of sadness because I know of friends with head and neck cancer, and other cancers, who are living with advanced cancer.

I do know, however, that if there can be others support systems for example, psychologists and/or palliative care team with experience of helping people through, the prospect of what MAY lie ahead could feel less fear-based.

I would highly recommend not only reading this section but acting upon the help offered too. 

 

Part Four: The Psychology Part: How Can I Manage All of this.

  • Mood vs treatment
  • Anxiety
  • Sleep
  • Appetite
  • Fatigue and exercise
  • Body Image
  • Relationships and sexuality
  • Working
  • Being present
  • Being grateful
  • Managing other people
  • Pain

I have a great G.P. He started being my G.P. about 6 weeks before my diagnosis in May 2017.

Like my husband, he has been what I call a ‘cheerleader’.

Someone in my life who helps, encourages and supports me.

In the various times when I have been worried and scared, and this was prevalent a LOT in the first year, he was a voice of reason and reassurance.

I also have a professional team in Chris O’Brien Lifehouse and at Westmead Oral Sciences who I can call or email. Their help, at the other end of the phone after I have sent a photo or text has been exemplary.

In turn, all of the above has helped me see my way through.

Having a rare cancer: both statistically and type, I often found “I” became and still am, the expert in my mouth and its care. I

have learned a lot from those who helped reconstruct my mouth, along with my local dentist, but from my 4th year of recovery (about this time in 2020) I became the ‘one who knew’ most about my cancer and my recovery.

Some Final Thoughts.

This is a section in the book…

and I will add mine.

Knowing how I felt at the beginning of my diagnosis and how hard it was to concentrate with the spectre of an 11 hour surgery ahead of me, I could not have contemplated picking this book up and reading it.

I did ask my husband though and he says it would have been ok for him to have it at that stage.

Now, as I review my reactions and responses to my cancer in over 4 years, I would have been ready by about a year in.

That was for me.

Oh, and about the red balloon on the cover. It took me a while to find out about its significance. Dr Lindsay uses the balloon the illustrate how when holding a balloon on a string, it may occasionally pop back onto you, just like the occasional anxious thinking about cancer. In other words, the thoughts do come and go but they are not there forever. Or indeed they can be batted away. No longer controlling us. 

Others may see it differently.

Thank you to Dr Lindsay and those at Chris O’Brien Lifehouse who support patients and families and carers on the psychological path of a cancer diagnosis.

Thanks too, to Exisle Publishing for the book. No payment was made to me for this review, it was the gift of the book only. I am a truth teller and this is my review.

I give my permission for Exisle Publishing and Dr Lindsay to use my words within this post.

Denyse Whelan.

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 #251

Life This Week. Link Up #251

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

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

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

* Please do stay to comment on my post as I always reply. It’s a kind connection I value as a blogger! 

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

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

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

* THANK you for linking up today! Next Week’s Optional Prompt: 32/51 Remember

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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.

* THANK you for linking up today! Next Week’s Optional Prompt: 31/51 Question.

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Share Your Snaps #6. 30/51*. #LifeThisWeek. 81/2019.

Share Your Snaps #6. 30/51*. #LifeThisWeek. 81/2019.

*The World Head & Neck Cancer Day and Soup For the Soul Version 2019.

Every 5 weeks here, there is a photo-based post called “Share Your Snaps.” I sometimes need to add words…that’s me. This time around I am letting the photos tell the story of World Head and Neck Cancer Day and Beyond Five’s Fundraiser: Soup for the Soul.

July 2019.

July has been chosen internationally (since 2015 I believe) to have one date noted as “World Head and Neck Cancer Day” 27.7.19. Like most ‘events’ health-wise, this one has an origin in the U.S. and the colours for Head and Neck cancer internationally are maroon (burgundy) and cream. In Australia those who follow Queensland in State of Origin would be impressed. Moving on.

The only charity devoted to Head and Neck cancer awareness in Australia is Beyond Five. Regular readers will know as a head and neck cancer patient I was keen to help share information about this little-known cancer and late in 2018 I was invited to become a volunteer Ambassador. I have written more here.

How did this July go?

I held a virtual Soup for the Soul event which raised $355. $385 as of time of publication! Thank you all.

My Soup for the Soul

I promoted Soup for the Soul via social media and there was also a ‘real event’ at the Central Coast Cancer Centre: hosted by the centre and the head and neck support group with donations of soup, rolls, the space in which to hold the event, prizes we got as donations for a raffle and my tiny cupcakes were sold. There were quite a few of our group there and here we are. FYI, in this photo there are 7 of us with head and neck cancer.

Some snaps from the day.

Beyond Five Information Sharing.

Promotion of WHNCD and Soup for The Soul via My Local M.P.

Last year, the Federal M.P. for Dobell, our area, Emma McBride kindly came to our place to meet with me to hear more about head and neck cancer and to support Soup for the Soul.

July 2018.

From time to time, I have kept Emma apprised on my progress, and recently wrote to her about this year’s event. She was able to meet with me, on the ACTUAL World Head and Neck Cancer Day to both offer her support and then share via social media. Emma and I also discussed the importance of carers and she is now the shadow minister for carers and mental health. Thank you Emma and also Jacqui for organising this!

July 2019.

What Next?

I admit I need a little break from all things head and neck cancer but then again, how I would do that when it is part of me, I am not sure!!

I am making a walk each day my focus and I am getting back to noticing nature and of course, the dressing with purpose and going for a coffee EVERY day remains essential to my wellbeing.

How do you go looking after yourself after an intense time of busy-ness?

Denyse.

 

You can link up something old or new, just come on in. * Please add just ONE post each week! * Feel free to go with the prompt for the week to add your ‘take’ on the prompt. Or not. * Please do stay to comment on my post as I always reply and it’s a bloggy thing to do! * Check out what others are up to by leaving a comment because we all love our comments, right! * Add a link back to this blog in your post somewhere. I don’t have a ‘button’ so a link in text is fine! *Posts deemed by me, the owner of the blog and the link-up, to be unsuitable for my audience will be deleted without notice. * THANK you for linking up today!

Next week’s link up: 31/51 Gratitude 5/8/19

 

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