Wednesday 4th August 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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Click here to enter


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Women of Courage Series. #62 Juliette O’Brien. 83/2021.

In July 2021 The Women of Courage posts will be connected in some way to World Head and Neck Cancer Month (July) and the #WHNCD Day on 27 July 2021. Those who have followed my blog since 2017 know I was diagnosed with a rare Head and Neck Cancer in my upper gums and under the top lip. More here. And below, as I introduce Woman of Courage, Juliette, I will expand more on our connection.

Women of Courage Series #62 Juliette O’Brien. 83/2021.

Two years ago….around this time of year, I tentatively courageously launched Women of Courage series on my blog and here was what I said then:

I got this idea from attending the Newcastle Writers Festival in April 2019 and hearing the wonderful Jane Caro speak about her book Accidental Feminists. IF you ever get a chance to listen to or read Jane’s works they are very good.

What I considered after that day and in the days to come is how we women have a tendency to underplay our achievements and whatever else we are doing in our lives. I know this is changing.

This third series of blog posts on Denyse Whelan Blogs to be found here will continue to be published each Thursday.

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

I was honoured and delighted when Juliette O’Brien, aged 37 agreed to share her story as a woman of courage. We have yet to meet in person, but we have connected on social media (where she is @juliette_io on twitter) and one day, we will catch up over coffee at Chris O’Brien Lifehouse. Now, if that name seems familiar, then you might be correct in making the connection that Juliette is the late Professor Chris O’Brien AO’s  daughter.

I feel so privileged and glad to have been referred to my head and neck surgeon, Professor Jonathan Clark AM that day back in May 2017. He learned much in his training days from the Head and Neck surgeon we all knew from the long-running show about a Sydney Teaching Hospital,  R.P.A. on Channel 9, Dr Chris O’Brien.

Thank you to Juliette so very much for this. You are a gifted woman in so many ways and a quiet but steady achiever too.

 

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

I lost my dad and elder brother to separate unexpected illnesses when I was in my 20s. I did – and continue to do – my best to support my mum and younger brother, to honour my dad’s and brother’s memories, and to continue to find joy and meaning in the world.

I don’t think any of this is courageous, but it has taken effort and perseverance.

 

How did this change you in any way?

These losses changed me profoundly.

They drove me to question our most common assumptions about what it means to live a ‘good life’, especially external signals like attaining status, hoarding wealth and meeting social expectations.

Living in way that subordinates these to your own principles means pushing through discomfort, fear and disapproval.

I suppose this takes ‘courage’ that I doubt I would have had otherwise.

 

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

 

Sometimes we use the adjective ‘courageous’ as though it is a constant state of being or personality trait.

In fact, I think courage, or at least the possibility of it, presents itself moment to moment through the countless decisions we make, and requires renewed interrogation and commitment every day.

 

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

 

I would like to share a poem by the wonderful John O’Donohue (poet, philosopher, former priest).

It is called ‘For Courage’.

I especially love these phrases: “this darkness has purpose”; and “Close your eyes, Gather all the kindling, About your heart, To create one spark …”.

 

When the light around lessens
And your thoughts darken until
Your body feels fear turn
Cold as a stone inside,

When you find yourself bereft
Of any belief in yourself
And all you unknowingly
Leaned on has fallen,

When one voice commands
Your whole heart,
And it is raven dark,

Steady yourself and see
That it is your own thinking
That darkens your world.

Search and you will find
A diamond-thought of light,

Know that you are not alone,
And that this darkness has purpose;
Gradually it will school your eyes,
To find the one gift your life requires
Hidden within this night-corner.

Invoke the learning
Of every suffering
You have suffered.

Close your eyes.
Gather all the kindling
About your heart
To create one spark
That is all you need
To nourish the flame
That will cleanse the dark
Of its weight of festered fear.

A new confidence will come alive
To urge you towards higher ground
Where your imagination
will learn to engage difficulty
As its most rewarding threshold!

Thank you so much Juliette. Not only for your story but for the added words of John O’Donohue.

His words, narrated before his death, are part of a series of his that I listened to a great deal as I struggled with some challenges in my life’s transitions before cancer.

I cannot and will not compare one person’s story to another, however to know that we can share resources of hope, love, wisdom and courage is to be connected. We need to stay connected.

Looking forward to “that coffee” as soon as Covid is settling!

Denyse.

Note About Head and Neck Cancer Support on-line.

IF a family member or someone you know does have a diagnosis of a head and neck cancer or that person is a carer, the value of a good facebook group cannot be over-done. The friendly space that IS this group for eligible people to request membership is a good one. There are people from all over the world but the group is not huge so personal connections can be made. It is mainly made up of New Zealanders, and Aussies too…along with those from the U.S. There are questions to be answered to join and it IS strictly for those with a head and neck cancer. Link is here.

This is a link to Head and Neck Cancer Australia too. This is where I found information initially after my 2017 diagnosis and where I am now an Ambassador.

 

Joining with Natalie here for Weekend Coffee Share.

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

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Gratitude. A Word & A Feeling. #Head&NeckCancer #Recovery. 82.1/2021.

Gratitude. A Word & A Feeling. #Head&NeckCancer #Recovery. 82.1/2021.

I occasionally add a post in between planned ones as I am doing today, 6th July 2021.

The reason is how grateful I am feeling and wanted to express this on the blog as I have already shared via my social media updates.

Today is a special day in my life.

6th July 2021.

It marks the 4th Anniversary of the first, and very complex, surgery for the cancer in my upper gums and under the top lip to be removed, along with ALL of my upper jaw and palate.

Yes, what an occasion. Oh, and in case you did not know, I also had a reconstruction in that same 11 hour surgery which harvested my right fibula, flesh and skin from my right leg and added those to make me an upper mouth. Much more to it than that, but I am here to tell the story that it did, for me go well.

I had no idea really how I would go in recovery but the fact that I had complete trust in my team and their planning and their work, and could see that I was in the best place possible for this to happen all helped. Greatly. I am a worrier by nature but over time, learned that with that my job was to keep the healing going, taking care of my emotional health and doing all I could physically to recover. There are many blog posts and they are all here.

Today though is a sharing of my updates from yesterday and today.

5th July Memories.

The day of pre-admission to Chris O’Brien Lifehouse for my head & neck cancer surgery & reconstruction the next day. Never forget how it was. A relief in many ways. It had been 7 weeks of waiting. For planning, software & 3D model for my mouth. Not much sleep that night. 4 years ago. I already felt I was going to the best place for what was to happen. That instilled so much confidence in me and my husband having been here for the discussion of my surgery with my Professor and team.

Before AND After Images: 4 years apart.

One very special place I have visited over the 5 years we have lived here is the Bridge over Budgewoi Creek at MacKenzie Reserve.

The first image of of the hair-prepped for long time between haircuts, late June as I contemplated and considered what was ahead. Yes, I was scared but I also knew there was nothing else but to be putting one foot in front of the other and moving forward!

The second image, is from today (I do go here quite often but made a special trip today) to give my thanks for how my recovery and wellness is. I did not smile deliberately as I wanted to show my top lip for how it really is. Smiling of course is better…but I acknowledge that cancer took quite a bit of under that lip and 2x skin grafts have helped.

Today I shared this collage first.

It’s made up of four progress images from July 2017, July 2018, July 2019 and July 2020. Don’t my surgeons do an amazing job? And of course, my prosthodontist and my own body in recovery. Very, very grateful.

Selfies are great for monitoring progress for a visual person like me who needs evidence, as I waited… learning that TIME does indeed heal but patience is also necessary!

This impatient person learned, mostly to be a patient patient over the many months, trips back & forth to Sydney: Westmead Oral Sciences & Chris O’Brien Lifehouse

The person who helped me through these trying times… to learn patience is my husband!

 

Thank you Bernard for your patience & time given to me for “selfies”💙

 

Today we marked my 4th anniversary with some pics & a gratitude letter to my HNC surgeon & nurse… then I drove to Budgewoi to “exercise” but to mostly give thanks. This bridge at Mackenzie Reserve is a special place for me.❤️

 

About gratitude. Again!

I have posted many times about gratitude. I have found it a practice that when I use it, I am helped greatly by finding at least one thing to be grateful for in a not-so-good situation. Today though I feel full. In a good way. Emotionally. I feel well, and I really could not ask for me. It’s a feeling for me. My husband knows I remember days and dates and he wanted to know where today stood in terms of day, birthdays, Christmas etc and I said…after some thought:

Today is on top.

It is the best.

I am so grateful and I am sharing this gratitude in my way here by blogging, telling people I love and sharing as best as I can. From my post back in early 2020.

 

My 2020 Word of the Year. I Still Have It in 2021!

Thank you dear blog readers and commenters too, you all make a contribution to my healing and wellness.

Denyse.

 

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Women Of Courage Series.#56 Cate Froggatt. 65/2021

Women Of Courage Series. #56 Cate Froggatt. 65/2021.

Two years ago….around this time of year, I tentatively courageously launched Women of Courage series on my blog and here was what I said then:

I got this idea from attending the Newcastle Writers Festival in April 2019 and hearing the wonderful Jane Caro speak about her book Accidental Feminists. IF you ever get a chance to listen to or read Jane’s works they are very good.

What I considered after that day and in the days to come is how we women have a tendency to underplay our achievements and whatever else we are doing in our lives. I know this is changing.

This third series of blog posts on Denyse Whelan Blogs to be found here will continue to be published each Thursday.

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

There are people who come into our lives for a reason, as the saying goes. This woman of courage came into MY life because of my head and neck cancer diagnosis! She is Cate Froggatt, aged 52, Clinical Nurse Consultant for Prof. J Clark AM who is my Head and Neck Cancer Surgeon.

This woman and I have clicked…as they say…over chats, shared experiences as parents and with hugs and smiles at my regular visits to have cancer checks. However she is much more than that for me. Cate tells me I met her at or after my first surgery in July 2017 but like all things where an anaesthetic is involved, a verrrryy long one, I can’t recall.

She has, along with my Professor, her boss and friend, has been inside my mouth on a few occasions. When I go for a check at Chris O’Brien Lifehouse (last one was in September 2020) I know (pre Covid anyway) I can get a hug and we share smiles and laughs too.

But she also is one of the people who knows a great deal about the surgeries I have had because she is part of the team that does many. A couple of memories of Cate from me. One is her blowing me a kiss after seeing me in the anaesthetic bay and wishing me well “see you sweetcheeks”…very comforting and another is the kind voice at the end of the phone when I was (very) concerned about the skin graft weeping after surgery #4…She said, I will show Jonathan the photos and get back to you. Within minutes, reassurance, get into the bath, take off the dressing and Bernard will have something there I am pretty sure, to cover it for you. He did. I was better after that.

And in receiving Cate’s story, she said “use any photo because I know you have plenty”. She is right. Here’s Cate’s story.

In Sept. 2020. “See you in a year”

Hug with Cate: early 2020

 

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

In a way I feel as if I have had to be courageous for most of my life.

Not in a ‘life and death’ kind of way, more like an ‘out of my comfort zone’ kind of a way.

It’s not the exciting kind of courage that gets written about in novels but rather the courage required by those who are innately shy and filled with anxiety about the possible disasters awaiting in the unknown and the unfamiliar.

I had to leave home when I was 12 to go to boarding school.

This was a situation which certainly required me to muster up some courage. Leaving the safety and security of parents and home was quite hard initially.

Following school I moved to Sydney to an apartment with two friends.

The sheer size of the city and the hustle and bustle was so far removed from all that was previously familiar to the three of us.

Just to go to the shops for groceries was an undertaking that required courage.

Let alone navigating public transport, working for the first time, attending university and meeting grown up responsibilities like rent and bills – all without Mum and Dad being close enough to call upon for help.

Being a parent requires courage although I think naivety saves the majority of us there – we have no clue what we are in for as we gaze lovingly down at our firstborns!

More recently my career has demanded significant courage.

Every day I feel like an imposter in a world where I am surrounded by the most amazing minds.

I stand beside my boss in awe of his intellect, his organisational skills and his ability to literally change the world.

The incredible opportunity I have been afforded by him to be able to contribute in a small way to the great things that are being achieved calls upon courage each day.

Finally as healthcare professionals we have all recently had to gather all our courage together in a rapidly changing world where each day of early 2020 brought with it new fears, new parameters and new demands on physically and emotionally exhausted bodies and minds.

 

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

All of these things have not so much changed me but shaped me into the person I am.

 

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

I have learned to ‘just do it’.

If you think you can, you probably can.

Have faith in those who have faith in you and never, ever underestimate the power of commitment and dedication.

Finally, if you can’t beat fear, do it scared!

 

 

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

Certainly. It becomes inherent.

 

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

 

Believe in yourself. As C.S. Lewis famously said ‘We are what we believe we are.’

The quickest way to acquire self-confidence is to do exactly what you are afraid of.

 

Ah Cate, those words about doing it scared. I know that too.

What a great way to own your courage and the examples just tell me and readers too, that courage IS a muscle we can work. Love your work…and you …I have been very fortunate to have been your patient as part of my head and neck cancer surgeries and recoveries.

I also thank you too for sharing my blog more widely with your colleagues and how this helped me become offered a role as an Ambassador for (then Beyond Five) which is now Head and Neck Cancer Australia!

Thank you Cate!

Do you have special health professional who has cared for you?

Share in the comments.

Thank you

Denyse.

 

This series continues over the next months.

If you have  story to share, please leave me a message in the comments.

Joining with Natalie here for Weekend Coffee Share.

 

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

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Gratitude & Acts of Kindness. 22/2021.

Gratitude & Acts of Kindness. 22/2021.

Last year I chose the word Gratitude as my word of the year. It challenged me at times to feel or be grateful but overall, I managed to not only feel it more than I might have but I also shared, as I said I would 366 posts about Gratitude as part of my Instagram account.

The instagram account for the blog is @denysewhelan_blogs and it feeds the series of photos which appear on the blog’s side bar. Ask for a follow if you are not already following me. Thank you!

In 2016 I chose Kindness as my word of the year and  whilst I did not even keep that post, this one was at a later stage in my life, in so many ways I failed at keeping the promise to myself. It was to include myself in being kind…to me! Soon, I will write more in the series Telling My Story about 2016 and it really was an even tougher year for me because…. I can be so incredibly tough on me!

What I Can Report About Changing My Thinking.

  • I am tough on myself
  • I am a judgy judgy person
  • I am, however, getting much better at becoming AWARE of the first two points because I use this:

“what am I grateful for today?”

I need to add, that when my wise, oh so wise husband told me he did this regularly upon waking and recommended it…I said “why?” or similar words. Now, of course from both the longevity of giving this a proper go, he is right.

Hey, husband:

You
Are

RIGHT!

and he also recommends both being “in the moment” because ….there is no other. No, he does not have a book deal but he is very handy both as a listener and helper AND a cabinet maker.

Learning from his example but also doing my own research and practice via daily meditation has given me a huge and wider appreciation for all that is in my life and has been.

A Daily Grateful List…I am making this up as I write…could go like this:

I am grateful

  • to be well
  • to be married to my husband
  • to live in a comfortable house
  • to have a flexible daily routine now I am retired
  • to have had a very stimulating and interesting career in education
  • to have enough funds to feed us well, dress us in clothes that we like and fit and to pay our bills
  • to know that I can see a doctor of my choice if needed, get medicines at a PBS rate and see my dentist for reduced rate check ups
  • to have reliable car to take me out each day
  • to be interested in other people
  • to have the commonsense to know when to take a break and enjoy some silence
  • that there is someone somewhere I know who can make me a very decent and consistent cup of coffee
  • that my family remains well
  • that my family is connecting with each other after quite an absence
  • to know that my elderly father is in great care where he is
  • that I blog
  • to have people respond to my blog posts and join in the conversations

But I do not make up a daily list anymore nor do I write 3 things I am grateful for.

Why?

It seems that I am able to integrate the feelings and thoughts about gratitude into my daily life.

This is very helpful to me when things do not always go my way and also if I become worried or fearful about something I can stop myself from going down rabbit holes and ask what is really going on? I can also then look for what is true and what I am grateful for. 

It works.

It really does.

Acts of Kindness.

In conjunction with gratitude for my life as it is now, I tend to look for opportunities for an act of kindness. I do not have the financial resources for these but I do have the time and notice when kindness is shown to me and do my best to return the favour.

Sharing my baked goods.

  • This was so good for me to do, and the recipients loved them in the COVID year. The recipients were the staff, including the G.P.s at our local medical practice. In fact they got quite a few of my boxes of little cakes and packets of home made biscuits. I felt that I wanted to show how THEIR kindness to us mattered so much. It was awful in those early months of COVID when so many government changes were made to regulations and their office staff took the brunt of that. I wanted to give a little bit of appreciation regularly and they loved it.

 

  • I also did this as appreciation to my surgeons. For my Head and Neck Professor Jonathan Clark and Team it’s now a given that I turn up with chocolate flavoured brownie slice and some little cakes. I love doing this for them. For my Colo Rectal Surgeon and his team, they were blown away with this act because I guess, not many people share home baked stuff.

 

  • I also took some down to the local Real Estate Rentals Team because they have been especially kind to us with ensuring we got a couple of great places to rent and also they cared about me when I had cancer. Their working conditions changed due to COVID too so they were really appreciative of a gift like this.

Sending friends a card or an unexpected gift.

I admit this happens less due to financial constraints but I try to think of friends who might be needing a cheer up or  “I’m thinking of you” too.

In one case, I have sent a Big Hug Box to a friend with cancer. I know it was appreciated very much.

In fact, it’s Random Acts of Kindness Week as I write.

I know my friend and founder, Lisa Greissl, is hoping for donations IN KIND…aka money, towards the RandomHUGSofKindness boxes donated to cancer centres. These are not purchased individually but are donated as a result of corporate and business donations drives and more. See here for much more about that.  Lisa was also a Woman of Courage here. 

From my time as a volunteer contributor in 2018 and 2019. I made book marks from my art, and sent them to Lisa where one day I too became part of a packing team for the early versions of RHoK boxes. For more updated information please use the links I have provided. Lisa’s story is unique and I hope you get a chance to read more about her and the ‘why’ of founding the Big Hug Box.

Have you found being grateful helps you?

What is your way of being kind to others?

Do you remember to be kind to you too?

Denyse.

Linking up with Leanne here who is the epitome of kindness! Lovin’ Life Linky, every Thursday.

And across the oceans, with Natalie here for Weekend Coffee Share.

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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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Share Your Snaps #2. 10/51. #LifeThisWeek. 20/2020.

Share Your Snaps #2. 10/51. #LifeThisWeek. 20/2020.

Welcome to the second in the series that comes along every 5th week here. “Sharing Your Snaps” as an optional prompt grew from a need to have some less-wordy posts and more photos to share! This one though is, like me, wordy.

Now: before you start….I am absent from the blog for now. As this is published I am either still on my way to Sydney: specifically Parramatta Eye Hospital and Day Surgery to have the first of my two cataracts removed OR in the place itself. My dear husband is the kind chauffeur, picker-upper from after surgery and the one charged with caring for me on our overnight stay. No idea of how I will be but know I am a good recoverer…because after Tuesday, we have a night at home, then back down the M1 on Wednesday for the left eye to be done. We go home that evening as my opthalmologist/ surgeon is happy for me to present to the Morriset rooms for check up on Thursday. This surgery has been coming for a couple of years and now, sigh, it is necessary. I will be back here when I can and am ready to do so in a semblance of being able to read still as my eyes will be a bit sore I am told. 

When I was in Sydney, specifically the suburb of Camperdown, I decided it might be a good idea to do a “day of cancer check” post.

“Sharing the Snaps and The Words!”

Missenden Road (just off the Great Western Hwy) is where the main arm of this major Sydney teaching Public Hospital is and it’s called R.P.A. or Royal Prince Alfred Hospital. On one side of the road too, is Sydney University with its residential colleges and more. “MY” hospital, as regular readers know is called Chris O’Brien Lifehouse, and is just 6 years old. The building replaced an older part of the R.P.A. complex I believe. It is opposite a part of R.P.A., St Andrew’s Residential College and just down the inner road,  is Gloucester House, where my 96 year old Dad had a ‘melanoma’ removed…not a melanoma so good news!

Here’s my day: Tuesday 3 March 2020.

Left home around 2 hours prior to appointment. Drove myself. This has been the case since early 2018 for me. Happy to do so.

The trip is via the M1 or Motorway 1 which is a dual lane highway with speed limits of up to 110 kmh but two sections which are 80 kmh because of continued road works. I usually do not need a loo stop these days…go me…and wait till here for that.

I generally enjoy the drive via the M2 then over the Harbour Bridge (been driving over it since 1967 as a licence holder)  and along the Western Distributor until I turn left at the Sydney Fish Markets and up via Pyrmont Bridge Road and across the highway into Missenden Road. When we first visited Chris O’Brien Lifehouse, my husband drove (I was way too caught up with my day-old cancer diagnosis) and then as we came down for surgeries and then checks after surgeries he came too. We stayed twice in apartments shown here, and at 6.00. a.m. meandered up Missenden Road in winter-morning light for one surgery and daylight for another.

And, then here’s why I am here! Chris O’Brien Lifehouse is named for the visionary person, who died far too young, Professor Chris O’Brien. It was his vision, and drive which eventually saw the Federal Govt and State come together to fund this place. He did not see it happen. His wife, Gail has been there for every part of the journey. Every. Day.

Do come in. Take care first and welcome. This is why I love this place….it does not have the cold feel of any hospital I have visited. Music is heard, people chatting, creating art and just taking time to rest, look around and wonder. I still do.

Here’s my favourite sweet treat and great coffee. People watching too. Some medical and surgical people catching up. Patients brought down by a friend or family from their room and those of course, who are maybe waiting and wondering. It IS a cancer hospital I need to remember…..I have only just started being comfortable with enjoying this time for a snack since October 2018..teeth were in by then.

Oh, is that the time? Almost 1 p.m. Time for taking myself to the Clinic on Level 2.

I do prepare for a bit of a wait but last week it was around 10 minutes. Glad to have a 1 p.m. appointment booked always so I have a good trip home.

Kisses, hugs, smiles and gifts of little cakes and brownies. Oh, yes, and a cancer check up too. I can never forget that. I know once I tried to vanish it as a thought and my Prof said “Denyse I am a cancer doctor”. Yes. I know. After a great (but short as I try not to over step my time) catch up, proper examination by viewing and feeling – the glands around my neck and chest, he declared “see you in 6 months”. Wow. So good to hear. Delighted. Will be having a CT scan before that visit. Photos, please! Time for an updated one or two.

My Professor is the Chairman of Beyond Five, the organisation where I am a head and neck cancer community Ambassador and he and his surgical nurse assistant Cate were delighted to hear of the event on Saturday 7 March held on the Central Coast where I will speak and all funds will go to Beyond Five.

The drive home was good. In fact I was home without a stop in under 2 hours. I found it a challenge (but I was good) not to use my phone at all in the car as NSW is now having random cameras catching drivers (and I heard passengers..cannot confirm) using their phones. 5 points and a heavy fine. My phone, once I started its audiobook, sits inside the console where no-one can see it.

I hope you found My Day of interest. I hope to be back to comment when and if I can…and to read but I shall have to ‘see’ how I go.

Denyse.

Link Up #179.

Life This Week. Link Up #179.

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

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Next Week’s weekly optional prompt is: 11/51 My Neighbourhood 16.3.2020

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