Tuesday 17th May 2022

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

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

It’s 17th May 2022 as I write.

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

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

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

Marking the time I knew I had cancer.

 

My progress: 2017 into 2019

 

2019: 2 years ‘reward’

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

 

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

And now: 5 years on.

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

Special way to remember:

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

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

Thank you to everyone from my heart.

Denyse.

17.05.2022.

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

Thank you Natalie.

https://natalietheexplorer.home.blog/

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35/51 #LifeThisWeek. Telling My Story. Ch. 26. Part 2/3. May-August 2021.106/2021.

Telling My Story. Chapter Twenty Six. 2021. Part 2/3. May – August.

The backstory first:

FOUR years ago now ….I thought it was time, seeing I had a blog, to start writing my story. It was on advice from a blogging friend, now published author that I did. Then, for a long time I did not. Because cancer was diagnosed.

Nevertheless, I eventually returned to the story and now I am at Chapter Twenty Six. Telling the story as 2021 progresses in three parts. Today is Part Two. May-August 2021.

So, in keeping with my ethical approach to all things, I am making the chapters about MY recollections to various changes in life for me, and us, and life as we knew it. I hope I can continue sharing the story without any intentionally negative or hurtful references to others who are in my life as friends and family members. All of the stories to date found here.

And with this chapter, a recent photo…taken overlooking the harbour at Dobroyd near where I grew up close to Manly N.S.W.

 

May 2021.

We had pretty good weather in May. We got outside even more. The covid ‘stuff’ had settled. However, we could never be quite sure of its whereabouts so we did “wearing a mask” when asked inside, and I know I was pretty casual about signing in using the State Government QR code. No-one was really practising social distancing but living on the coast, we did not have too many concerns.

We did not travel to Sydney for Mother’s Day this year even though I could have. It just wasn’t happening.

I got to celebrate my 4 years since my Head and Neck cancer diagnosis with a much anticipated visit to Sydney’s Lyric Theatre where I saw Hamilton.

Yes it was everything I had hoped and more. Wonderful.

That week I also came back to Westmead for a 6 month mouth check with my prosthodontist. All is well.

I stopped on my way home at a cafe in a nursery where I used to meet up with friends in Sydney days. It was lovely but it had changed as had I.

June. What happened?

We were continuing to be lulled into some kind of normality, living without too many restrictions and life was pretty good.

I visited my Dad to celebrate his 10 years living in his independent retirement Unit. He is going well.

I had my 6 months check with my regular dentist and he was very pleased with how well I care for my mouth and 8 teeth now! It’s always a treat going to him because we have such a history and he is a great cheerleader too.

I was delighted to recall that my head and neck cancer nurse, Cate, was a Woman of Courage on the blog too. But….the head and neck cancer group getting to Canberra was not able to happen because of Covid restrictions in Victoria and I took a reality check. The reality check for me was about how I would be able to eat when away from home over 3 nights and it was literally something I need to accept. A future post on eating and drinking challenges post head and neck cancer was planned.

But, we were going OK. In fact we had morning tea out twice using our government’s ‘dine in’ vouchers and I was excitedly planning the Soup for the Soul event with my friends from BluJ’s in Toukley.

 

And then late June 2021, just as the school holidays began, and we got excited about seeing our son and his family to celebrate our newly minted 8 year old’s birthday it was OFF. Back to Lockdown. Because of Covid 19 and ONE person’s infection from the newly seen and very nasty delta strain….it was not a good news day or week. So much changed in a very short time. STAY home. STAY safe. And as I write this ready for 30 August publication we are STILL in same lockdown. It’s actually become much more serious. More on that as I try to recall August! OK, we live on N.S.W. Central Coast, around 2 hours from centre of Sydney the capital of N.S.W. On 27 June 2021 we were declared to be part of Greater Sydney, along with Sydney and all its suburbs, Wollongong and Shellharbour to the south and the Blue Mountains to the west. NB: the Central Coast where we live was declared a regional area mid August.

The Hawkesbury River and Bridge. From the side where I took this photo it’s Central Coast.

July 2021.

July holds many memories for me since 2017. It marks the anniversary of my first head and neck cancer major surgery and reconstruction on 6 July (4 years this year) and 27.7 each year – since 2014, is World Head and Neck Cancer Day.

I met other people who were also head and neck cancer patients, carers and professionals in July 2018 at Central Coast Cancer Centre and in 2019 was part of the group called Central Coast Head and Neck Cancer Support who held a Soup for the Soul Event. And, each year the charity for whom I volunteer as an Ambassador, Head and Neck Cancer Australia, has awareness activities on line and encourages communities and individuals to host Soup for the Soul.

I was one who was going this with my friends at my local cafe but once lockdown came and they chose not to open as takeaway business was not a large amount of their trade, the event could not go ahead. So, I made it a virtual event and kind friends and professionals donated to a total of $305.

Some other memories and more from July 2021.

And August Arrived!

Of course we celebrated our daughter’s birthday. Post in detail here. We continued in lockdown which felt endless. I admit I did sometimes get very cranky on social media and then had to stop using it.

I tended then to spend more time outside, or doing something creative. I know preparing and sending off little packs of bookmarks was a positive experience.

Of course, Women of Courage continued on the blog but I was planning to bring it to a close soon. I stayed in contact on line with friends and family as much as practicable but also remembering people at work (even at home) are much busier than I am.

I had successful dental checks – of the regular kind. I am doing well after the surgeries I had in July and August 2021 and I am very grateful for that. I talk to Dad once a week. He is OK and finding the visitors restrictions within his unit complex quite frustrating. He is a sociable person. My brother and sister in law help him each week with shopping and some company. I haven’t been to see him since mid June because of “lockdown”.

I try to get out each day somewhere to notice nature – walking locally or driving somewhere near the water and that helps regulate my mood.

And to do this often:

 

What’s ahead and what other news is there?
No-one knows.

However, I know I am going well and have quite a few choices of art and creative ventures at home. B is making a new TV cabinet and has numerous small projects on the go. He is doing some on-line music lessons and I have similar ones for art. We would not be happy if the NBN stopped working!!

My dear husband has enjoyed writing his 3rd blog post, with another one to come. We are very well suited…different interests but shared common history, love of kids and education (not always the formal kind), and connecting with people. It’s the first time in our marriage of over 50 years that we have spent so much time together at home and for the most part…at least 99% …it’s going well.

Our next door neighbours have two little ones, one born just before Easter and when our family visits were curtailed and I had excess of mini cupcakes in the freezer, it’s been great to share (safely!) a couple of little boxes of treats. Their family cannot visit just as we cannot have ours come. Still, for the greater good.

We have made a promise, once new restrictions began for lockdown, to only go to two stand alone supermarkets, the doctors and chemist and (before they became more restricted in entry) Bunnings on occasions for B. On one day, only one of us goes out (for essential reasons) and we stick to that. I recently made a trip to the local Reject shop…the only place open in a large super centre to buy a stash of cards for upcoming birthdays and celebrations. I also got some fun items which have been sent to Sydney to two families for the school aged grandkids…a care package…costs more to post by express but I would rather they got them! Australia Post employees tell me they have never been busier.

Here’s  two days of contrast (weather and condition wise) at Soldiers Beach.

 

Mon 23.8.21. Warm weather

Great day but look at those clouds.

Windy & wet. Tues 24 August.

Same ‘area’ where person was snorkling on Monday!

 

 

UPDATE: In late August I heard very sad news. Two friends had both died of cancer. One of whom was a Woman of Courage. Her name is Tracey Fletcher King. Here is the link to her story:

The second person is Fergus McCulla, a young man I had the pleasure of meeting back in 2019 as he had questions to ask me about my surgeries for cancer in my mouth. Fergus’s cancer was a very nasty one, and despite “everything” he eventually left behind the pain and suffering, that as his Mum said, he never spoke about. On Tuesday, I will attend his funeral service which will be streamed on-line.

 

Sending my love to the  families and friends of both of these special people. Vale Tracey and Vale Fergus. I am honoured that our paths crossed.

 

 

 

 

And so the second of three parts of 2021 is done. I will of course, be finishing this year’s story. However, I am no longer going to update here as I have found it hard(er) than I imagined in the midst of other life stuff…meaning, I am reducing some of my ‘have to’s in 2022 and keeping Telling My Story going won’t be a blog post. I might do a summary one time, but the recall and record keeping is less appealing than when I committed to starting!

 

Thanks for reading. And maybe just skimming but looking at the pictures. That is cool too. I am grateful I have used this blog to make me accountable.

Last one will be published as the last blog post (and Link Up) for 2021. 51/51….but we have a few weeks to go to that, and I am not wishing the year away!

Denyse.

Link Up #255

Life This Week. Link Up #255

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!

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Next week’s optional prompt: 36/51 Self Care Stories #5. 6 Sept. Link Up #256

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Women of Courage Series. #64. Anne Howe. 89/2021.

Women of Courage Series. #64. Anne Howe. 89/2021.

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.

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

Whilst Anne Howe, who is in her late 60s, and I have not met in real life, we have connected on-line via a very supportive facebook group for those affected by Head and Neck Cancer. The details are below. Anne’s story looks short yet it is incredibly full of courage from Anne’s words, taking the best chance you can as a human to survive a devastating diagnosis and allowing those who have your trust to do their best for you. Anne is a very determined woman, loved by her large family and often a carer to others. She has had more surgery since her post-HNC photo was taken and this has been, as best as it might happen, for her to have some teeth added inside her mouth.

Note from Anne:

 While I have had teeth made I am unable to wear them until I have had the screws implanted in my jaw and the bridging work made. Then its fingers crossed to hope my jaws don’t crumble due to the radiation. So still a way to go there.

I chose to use both images supplied by Anne as they do illustrate her words at the end of her story. I have, though, used her image before the surgeries for her Woman of Courage collage because it was then she needed to have all the courage she could muster to go through her many trials in her head and neck cancer journey.

Thank you, Anne. Let’s share your responses now.

 

 

 

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

My moment of courage kicked in when I presented for surgery to remove a SCC (squamous cell carcinoma) tumour from my nose back in 2017.

I was nervous and terrified as anyone is when facing surgery but the full impact hit when my surgeon came to see me.

His first words when explaining my surgery really tore through me.

He could NOT give me informed consent.

I would have to trust him and he promised to do the very best he could for me.

At best he would remove the tumour and do his best to repair the damage but at worst I could just wake up with a hole in my face.

With a very shaking hand I signed on  the line but while doing it a very gentle hand covered mine and a gentle voice told me he would take good care of me.

I woke up to find I had lost most of my nose, my top lip up to the nose, some of my left cheek, my central upper jaw and part of the soft palate.

 

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

After my surgery I was informed by my surgeon that I was stage 4 and he didn’t think I would survive.

He had done his best to get me this far and I made up my mind to do whatever I needed to do to get through this which is exactly what I have done.

I knew I had a long hard road ahead with a lot of work to be done.

Over the last 4 years I have endured 11 surgeries on my nose and 30 sessions of radiation.

I still have further nasal surgery to have and also surgery on my mouth due to having lost part of my jaw. (this is some of  the surgery I mentioned in my introduction)

 

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

When I woke up from surgery and first  saw my face I thought that was it.

Never in my wildest imagination did I think it could be repaired to the stage it has.

I put my faith and trust in my surgeon which was the best thing I could ever have done.

The other thing that helped get me through was the love and support 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 have learned from this experience that I am stronger than I ever thought I was.

I have often been told I am very brave but I disagree.

I have fears just like everyone else but to survive I just had to put on my big girl pants and do what was needed as the other option just didn’t bear thinking about.

It really was a live or die situation.

Over time my strength has just grown.

 

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

To anyone going through something that fills you with fear or concern my advice is to give everything you have because only then can you say you really tried.

Surround yourself with some people who will truly understand and accept you no matter what.

Sometimes I have needed to vent or just have a good cry to let those emotions out and that is important too.

Never give up.

 

My favourite saying through all this has been:

My face does not define me I am still the same person.

Anne, your courage and your story blow me away. What a great relationship you have with your surgeon. Trust is so much a part of it. I am so glad you are here, and looking after your family too…as you continue to recover. Thank you so much.

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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Women of Courage Series. #63. Cosette Calder. 86/2021.

Women of Courage Series. #63. Cosette Calder. 86/2021.

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.

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

Those of us who have been diagnosed with a head and neck cancer never feel quite alone when there are others we can share our stories and one such place is a special facebook group (private, but ask to join) here based in New Zealand. This is where I virtually met Cosette Calder, aged 46, and she was someone I reached out to share her story of head and neck cancer, and here she is. Thank you Cosette.

 

 

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

  • In 2015 I was diagnosed with throat cancer.
  • I had a young family, full time job and life was busy.
  • Suddenly everything stopped and I had to undergo Chemo and Radiation Treatment to beat this cancer and have a chance to live.

 

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

  • I had a brutal cancer treatment.
  • I couldn’t eat food and had to have a tube inserted into my stomach.
  • For two months I only drank water and was tube fed.
  • I lost 8kgs and some of my hair fell out.
  • I really had to dig deep to get through this treatment.
  • I had a plastic mask made of my head and shoulders.
  • This mask was for the radiation treatment.
  • My head had to be perfectly still on the radiation table so the mask was bolted across my face to the table for 20 minutes a day during radiation treatment.
  • It is incredibly scary and claustrophobic.
  • I somehow managed it.
  • I am proud of myself for the courage of wearing the mask when I was so ill and feeling down.
  • I fought hard whilst being so unwell. I didn’t realise I could be so strong.

 

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

  • Keep putting one foot in front of the other.
  • Sometimes we can’t help what happens to us.
  • Keep moving on and keep trying.
  • Acceptance too helps.
  • By accepting my cancer diagnosis I was able to focus and keep moving ahead.

 

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

  • I am stronger now.
  • I have been pushed to the limit and I know how lucky I am to be here.

 

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

  • You CAN do it!

 

Oh my, yes we do have brutal treatments don’t we?

However, in reading this of your experience as a head and neck cancer patient Cosette, and, now well-recovered, it is a tribute to your human qualities of strength and courage that you have recovered and now share your story. Thank you again. I am sharing the information below from the New Zealand Based Facebook Group for Head & Neck Cancers. Thanks to for all you do to share awareness!

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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