Monday 2nd August 2021

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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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. #61 P.M. 80/2021.

Women Of Courage Series. #61. P.M. 80/2021.

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 have met P.M. who is in her 50s and know of her story of courage from some sharing with friends. I applaud her decision to come forward and share this story of hers which, out of respect for others’ privacy, will be anonymous. P.M.  will come to read your comments which I hope you will make after reading to support this woman and her family member. And will be adding her comments for which I am very grateful.

I have  added some contact details below for helplines in New South Wales and Australia.

Thank you for sharing P.M.

This image was taken by P.M.’s daughter, then aged 14.

I thought it fitting to use today and have had permission to share. The same is for the collage: drawing by P.M.’s daughter aged 12.

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

 

I, and my husband, have needed to be courageous for our daughter who has experienced multiple challenges over the course of her lifetime. I have, and continue to be her advocate to ensure that she has the life she deserves.

At the age of eighteen, she was finally diagnosed with Autism Spectrum Disorder (ASD), Level 2.

  • The sadly tragic thing about this was not the diagnosis but that it took so many years to get to that diagnosis.
  • If she had been diagnosed as a baby or toddler she might not have struggled with eating (due to sensory issues that were never identified). Maybe she wouldn’t have screamed every time I tried to feed her or in the middle of the night for hours on end. Initial diagnoses – silent reflux and failure to thrive.
  • I had to be courageous then with all the guilt at not being able to give my daughter the most of basic of needs – nourishment. I had to be courageous when I was perceived to be nothing more than an over anxious older mum to keep seeking support because I just knew things weren’t right.

 

If she had been diagnosed when she started school, instead of being tested for hearing loss, she might have gotten the early support she needed to be able to focus amongst all the noise.

If she had been diagnosed at seven, she might have had help with social skills so that she made and kept friends rather than being seen as attention seeking.

Current diagnosis – language processing disorder.

If she had been diagnosed at 13, she might not have experienced significant dissociative events that took her out of school, and me away from my job, and be given another diagnosis – conversion disorder.

If any of the doctors and psychiatrists who treated her then had connected the dots, saw the value in further investigation into why this had happened then maybe she wouldn’t have missed a full term of school, lost three months of her life.

  • I had to be courageous for her then – flying with her to John Hunter Hospital when we thought she was experiencing multiple epileptic seizures and not knowing what was going to happen.
  • I had to be courageous when dealing with all the doctors who sent us home saying she needed psychological help but wouldn’t actually direct us to any supports.

If she had been diagnosed at 14 or even 15, even after all that time off school, she would have been able to achieve the grades that reflected her ability and not felt dumb as well as “odd or psycho”.

  • Maybe she wouldn’t have been bullied so mercilessly that she had a meltdown in the playground surround by students screaming and laughing at her while she ripped at her face and her hair.
  • Maybe she wouldn’t have started self-harming including the first attempt at suicide. Maybe we wouldn’t have had to pull her out of school again for her own wellbeing. More diagnoses added – depression and generalized anxiety.
  • We had to be courageous when again pleading with psychologists and psychiatrists to help her, help us help her, from believing she was worthless and broken.

We had to be courageous when we decided to leave our lives behind and head north to pull her away from the toxic hell she was in and just be a kid again, even if would mean that we would need to go back eventually.

If she had been diagnosed at 16 or even 17, after moving schools, she might have had a better chance of steering clear of the drugs and other risky behavior in an effort to fit in, to find someone, anyone who would be her friend.

  • Maybe she wouldn’t have been sexually and physically assaulted by one of her “boyfriends”. Maybe she wouldn’t have left school after one term of Year 11 or lost her traineeship because of her “odd” behaviours and perceived inability to follow instructions.
  • We had to be courageous when advocating for my daughter’s right to be safe and respected in her work place.
  • To drop everything to get to her when she was having a panic attack in the middle of street, to call 000 when she overdosed because she was done. And worse, having to be courageous in the ER to insist on further treatment when they thought it best, again, to send her home only 8 hours later.

Even after the diagnosis at 18, we have had to continue to be courageous.

  • By that time she was set in a cycle of self-destruction – drugs, risky behaviour, abusers and users, and more suicide attempts.
  • There were days we feared we would lose her for good and we felt alone and helpless. The hospital system didn’t want to admit her until she was almost 19, mental health services in our town were ill-equipped to give her the intensive sustained support she needed and there were few services that could support a complex mix of autism and mental health.

At almost 21, we can finally see that there is hope.

  • Thanks to NDIS funding and some amazing supports who believe in our daughter as much as we do, she has started to see that she has a future.
  • She has found a welcoming and understanding workplace and is training to be a chef.
  • She has found her passion – to make art on a plate. She has distanced herself, most of the time, from the bad influences and is trying to make better choices.
  • As we say, life is a work in progress and there are always dips and turns on the road to the future.

Finally, I want to call out my daughter who is the most courageous of all of us.

  • She has had to live this and I am in awe of her resilience.
  • She has survived everything that life has thrown at her and kept going despite everything.
  • Her diagnosis of autism has helped her realise that she is not broken, she is not a mistake. She is exactly who she should be – a pun loving, true crime and space obsessed, artistic young lady who deserves a happy future.

Her autism is and never was the problem – it was the misdiagnoses, the lack of understanding of how autism presents in females, and over stretched medical systems that created the hell she lived through.

 

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

This whole experience has changed me forever.

This fight to save our daughter, quite literally at times, has made me outspoken about the woefully underfunded mental health system, the lack of psychiatrists particularly in regional areas and the lack of supports for autistic young adults, again particularly in regional areas.

I have discovered that I never give up, particularly on my daughter, and that I will just keep pushing when things are not going well.

I have learned the value of speaking up and speaking out.

Before all this I was quite a private person who kept everything inside but I learnt early that it is not healthy or helpful to keep things bottled up, to keep the truth from the village that surrounds you.

How can we change the stigma of mental health, of autism, if we never speak openly about what we are going through? I have developed strengths I never believed I had.

 

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

When struggling with challenges it is important to learn as much as you can.

It is harder to fight what you don’t understand the facts.

I learned early that often the medical profession did not have all the answers or the time to dedicate to one patient so that became my job after years of blindly trusting that they knew what they were doing.

I have also learned that it is important to speak up, to not hold things in and pretend everything is okay.

Living a lie helps no one in the end.

You also need to learn to accept help, to willingly ask for it when you need it so that you have strength to survive the long game.

It takes courage to do all those things.

 

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

I am definitely more capable of being courageous when life calls for it – especially when it is to be courageous for my family.

While it doesn’t necessarily change the experiences, the challenges, being courageous gives you the determination and positivity needed to not give up, and to fight for a better outcome.

We know our advocacy for our daughter, to ensure she has a bright future even after we are gone, will not stop, cannot stop but will change as she grows and blossoms.

 

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

No-one knows how courageous they can be until the situation arises for you to step up, step in and work through the challenges presented to you.

It won’t necessarily change the challenges you face but it allows you to keep going, to keep fighting, keep finding hope in the darkness.

Just remember, that you never have to be courageous on your own.

Having someone there who will fight with you, take the lead when your batteries are flat, to give your other perspectives makes the challenge easier and allows you to keep being courageous for as long as is needed.

I thank P.M. and her daughter for this courageous sharing of their story. I suspect, from my knowledge, that it IS indeed much harder for girls and women to be accurately diagnosed. Yes to the fact that many of us have indeed trusted the medical and helping professions and now, as we see from your sharing, there can be an inability for ‘the connecting of the dots’ as you put it in terms of diagnosis. Thank you too for the included list of places for accessing help and knowledge.

I send my best to you all.

Thank you.

Denyse.

Places for help

Autism and girls – want to know more?

https://childmind.org/article/autistic-girls-overlooked-undiagnosed-autism/

 

https://www.autismawareness.com.au/could-it-be-autism/autism-and-girls/

 

https://www.yellowladybugs.com.au/

 

https://www.abc.net.au/news/2019-01-13/how-easily-girls-can-mask-the-autism-warning-signs/10701928

 

Autism and mental health – want to know more?

 

https://raisingchildren.net.au/autism/health-wellbeing/mental-health/depression-teens-with-asd

 

https://www.spectrumnews.org/features/deep-dive/the-deep-emotional-ties-between-depression-and-autism/

 

Mental health supports

 

https://www.beyondblue.org.au/

 

https://headspace.org.au/

 

https://www.lifeline.org.au/

 

https://www.health.nsw.gov.au/mentalhealth/Pages/mental-health-line.aspx

Joining with Natalie here for Weekend Coffee Share.

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

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24/51 #LifeThisWeek. Telling My Story. Ch.26. 2021. Pt 1/3. Jan-April. 73/2021.

Nourish 24/51 #LifeThisWeek. Telling My Story. Ch.26. 2021. Pt 1/3. Jan-April. 73/2021.

News Update:

  • I might have been driving to Canberra today getting ready to attend a Parliamentary Breakfast about Head and Neck Cancer on Tuesday 15 June, but this was not to be. Covid19 in Victoria prevented many of the attendees from coming, so now we “wait” until another date!
  • On Saturday, our time, Blogging Friend Marsha from AlwaysWrite Blog published a post after interviewing me and taking a great deal of time (and energy) to research this blog and find out more. The photo and the link is is now on the side of this blog  and for convenience, should you like to read it, I have it here too. I am very grateful for the way in which this was done AND I am very proud to say how much it means to me that #lifethisweek continues.
  • Taking the liberty today of not posting using the optional prompt, Nourish, but sharing the first third of 2021 in Telling My Story. Chapter 26, here it is.

Telling My Story. Chapter Twenty Six. 2021. Part 1/3. Jan-April.

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 One. January to April 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.

January 2021.

The new year here was quiet. I adopted the word “smile” as my word of the year. We got into planning and organising mode for our upcoming 5o years of marriage celebration.

It was to be “just our kids and their kids” at our place on Saturday 23 January 2021 – the actual day but NO.

Could not be done.

Why? The Covid Restrictions from December 2020 continued into January. There would only be a maximum of 5 people visit a house. So…with disappointment but resignation, we had the celebration over 2 days…and it also continued the following Saturday. Posts are here and here and here!

January is a boys’ birthday month in the family,

My Dad first, turning 97.

Then our son, 41 and his nephew, our grandson turning 20.

I visited Dad on the day.

The weather was pretty mild in January and we did not get any power outages…always a worry when temps rise in Summer. In fact, it was an excellent and pleasant summer month.

Here’s some highlights in photos:

February 2021.

It becomes a bit like back to school, even though we are retired. Back to some regular routines and some necessary health matters. It was me who got to have a gastroscopy (to rule out any bleeding, it did) and then an iron infusion in hospital It sure worked. Levels went from 11 to 225. I kind of noticed and I could go for more walks and sustain them too.

I continued walking pretty consistently most days, visiting the shops but rarely now having a coffee and something to eat. It has become too expensive to do this now as well. Still, I enjoy getting out and about and just window shopping..most of the time! I still keep an eye on clothing bargains and they come and go. I cannot buy on line much at all. I need to try clothes on.

I did like walking when I saw these.

Lots of the eastern states ended up having awful floods and torrential rain. We are in a pretty new & modern  suburban area but lots of roads were affected. I stayed away from places until it is safe and then I ventured out to take photos. Sure were high levels even after a break in the rain.

I got back to the first Head and Neck Cancer Support Group Meeting in a year. It was excellent being back together. The isolation of covid did not help with connection did it?

I went to my first in-person entertainment event (and a first for everyone involved post-Covid) at Newcastle for the Newcastle Writers Festival where Julie Gillard was interviewed by Rosemarie Milsom.

 

Covid restrictions were lifted for visiting at home, so I asked our son if we could all gather together at his place on the day for his Dad’s 72nd and we had fun with all the kids coming, and some play, chatting and eating Grandma’s cakes and snacks. And we got a much longer for FAMILY photo.

March 2021.

My memory is not telling me any moments are standouts really. However, I do recall Easter was here somewhere in the mix. I also drove down to see my Dad in early March 2021 and went back to where he and Mum lived for many years (I did for 10) and had quite a spiritual experience. I became brave enough (it’s been from years of fear about having to use a toilet on way home on the M1) to go to St Ives shopping centre on the way home and treat myself to a wonderful coffee and a slice of carrot cake. Really proud of myself when I make those small shifts.

Felt Mum’s presence here…very close to where she lived…and also where she died, just across that part of the Harbour.

61. The same address as this house…but NOT this house that has replaced our home.

Mum and Butterfly sign…I loved that.

No-one visits us here for Easter – or on long weekends – at our request. The traffic on the M1 to and from Sydney is crazy. We had a drive over to see the water -sparkling – near Norah Head on Good Friday. And later that day, we got to meet the second son of our neighbours…who at less than a week old enjoyed nestling in my husband’s arms.

We just ticked along here at home, with some regular medical appointments and check ups and then….it was announced we could apply for our first dose of a Covid Vaccine. We enrolled at a doctors’ nearby as our GPs were not involved and it was a seamless, and painless and reaction-less experience.

April 2021.

School holidays happened and we were glad to host our son and his family. Great fun day with them, and the girls filled my art heart with joy when they got stuck into the activities they found in my study. The eldest and middle one had all started learning with me waaaay back at Glenwood to use media and materials. Fun.

Our daughter’s youngest was turning 9 and having a picnic birthday lunch. When I asked could I help, I was assigned “take home” bags and can you make them “non-gendered”. OK. I did my best and let me tell you, changing my thoughts about not for a boy or a girl but either was a challenge but I heard they were winners.

Here’s how it ended up. The event was held at Fagan Park and the kids brought scooters and had free rein to play, and then they all got a package of their own picnic. I have a very organised and thoughtful daughter.

Out and About In Nature.

Weather conditions.

Change of seasons.

Beaches.

Rivers.

Creeks.

Trees.

Flowers.

I love it all and try to capture it with my iphone. Here’s what happened in Autumn.

Special Event: Sunrise on A.N.Z.A.C. Day.

It had been about 5 years since I had risen earlier enough to capture sunrise, so when A.N.Z.A.C. Day was on a Sunday, I rose at 5.00 a.m. and drove to Soldiers Beach Carpark (2o minutes away) and found a rock to sit on & watch, wait and give thanks for a year that has not been great but we got through. I figured too I was honouring the original A.N.Z.A.C.s It was an amazing privilege. 25 April 2021.

As I drove back home, I stopped and photographed the cenotaph at Toukley R.S.L. My collage is from 2020 and then 2021.

A Special Day To Visit My Dad.

“I’ll be down to see you next on your Mother’s Birthday.” I said to Dad. So it was on 26th April, I drove to Dee Why where Dad lives in retirement comfort to share some morning tea and memories with him. His mother, Gran to me, came to Australia as a war bride in 1920 and her life was ‘T for tough’ for a number of reasons. So, 26th April, I tried to get 97 year old Dad to have some gratitude and compassion for this woman he remembers as sad and cranky.  I said it would be helpful if he could, to try to see the challenges she faced after leaving her home country. I think it made a difference to his thoughts.

My memories from the day of my visit.

From my stop at Pymble: lovely camellia.

Dad agreed to a photo this time…and we even stood for it. He “is” however, holding onto me. On the right of him, the photo on the wall is of his mother and father on their Wedding Day, 1920.

I always try to do a life selfie on my way home.

And as I leave Dad’s I often drive to where I can see the beaches I remember so well from living nearby as a teen. How fortunate I was for those years to be near Manly, and to go to Manly Girls High School…which, funnily enough was/is in Brookvale and now known as Northern Beaches Senior Campus. This is from Freshwater looking back to Manly, North Steyne and around that cliff is Queenscliff Beach.

And that, is it for now. The first third of 2021. It was made easier with the photos to help me remember ‘what, who, when’.

Thanks for reading this latest Telling My Story.

The whole series is here.

Denyse.

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

Link Up #244

Life This Week. Link Up #244

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Self Care Stories #3. 21/51 #LifeThisWeek. Gratitude, Meditation & Ageing. 64/2021.

Self Care Stories #3. 21/51 #LifeThisWeek. Gratitude, Meditation & Ageing. 64/2021.

 

I am grateful.

This was made a year or so ago…

  • I thought to make this list of gratitude
  • I can see why I need to change my mindset to accept gratitude works
  • I sense that feelings this week have been oldies which tend to resurface when threatened
  • That by noticing this I can detach from the old ways better
  • I am loved
  • I am, generally, very well
  • I have a very kind, loving and caring husband
  • When I offer him my love and care and it is accepted with grace
  • I am almost 70 and truly going well
  • My life is enriched by my memories
  • My career was an amazing one
  • I am grateful to have contributed to education in NSW over 40 yrs
  • I love that I share teaching as a passion with many
  • I am grateful that teaching led me to my now husband
  • I like that I am well-respected within teaching circles and am always glad to help
  • I am pleased though that I no longer have to work in schools and education as it is so much more accountable and different
  • I love that I got to have 2 children.
  • I am grateful to have a daughter and a son
  • In the end I am glad of their age differences
  • I am grateful that it was found in 1978 that there was a physical reason for not having him earlier
  • I like that I have now made peace with my children in terms of how I mothered
  • I am grateful both of them accept the ways in which I know I faltered in being Mum as I told them in letters 3 years ago
  • I am always grateful to have been born into my family
  • I am more grateful now of the ways in which my forebears lived their lives so I had the more broad and cushy life I did
  • I am forever grateful my father championed me getting an academic education

At my teacher’s college graduation.

Try Making Your Own Gratitude List.

No-one else needs to see it.

Start small and let it grow

I made this in notes on my phone and added to it.

I did get to 100 but I did not want to bore my readers 

What started as a daily list in 2020 has continued into a more integrated way of seeing things. “Feeling” the gratitude helps me change things.

Why I Can’t Stop Meditating.

I learn something new most days about myself and being human

I listen to Daily Calm via Calm App with Tamara Levitt each morning before getting out of bed. Yes, I meditate in bed. There is no rule you need to be uncomfortable. Just awake. And to absorb the messages.

I now do the daily written reflections after the Calm meditation and have kept those private.

I often share the daily calm photo with a quote. Really enjoy adding my views to those words.

Now, I listen to Calm at night with this man talking Jeff Warren and it’s called The Daily Trip (I didn’t like the ‘trip’ initially as it had old-connotations for me about tripping on drugs but now I see how it works. Really good having different people guide me.

I am quite a record keeper and like that but I wouldn’t want to stop calm at all now.

It is part of my day (and night)

Self Care Socially.

I missed social interaction when I retired and I know I tend to do more of this on-line now

But, I still have my goal of getting out somewhere every single day. I may no longer have a coffee out (it was getting expensive!) but I chat to people and walk in areas that are nature-centred too. Going out to take photos is a wonderful way to enjoy myself.

And, in a way of celebrating greater inner confidence I am continuing to meet up with people for morning tea. On Thursday, I am meeting a journalist for that very reason. Socialising. She has followed my on instagram and we live relatively close. Excited to be doing this.

I met another friend from social media too. She works in the area. Great to finally meet.

And I recently drove myself to Sydney – no problems with that – and saw the musical Hamilton at the Lyric Theatre. Booked in Covid times we could not be sure it would go ahead, but it did. I wore a mask. Not a problem to enjoy the performance!

 

How I Manage Aspects of Ageing.

I ignore them…not really.

It is far better that I notice them.

Some include the nuisance of not being able to recall names and events whereas I used to be so GOOD at that. It’s not anything nasty but another developmental thing about being in my 8th decade (group of 10 years). Notice I am 71 but when our first decade is 0-9, that IS our first decade. So, if you are 61 you are in your 7th decade.

I am very pleased my cataract surgeries have left me with great distance vision and still, after my 12 months check, the same good reading vision – with glasses.

It sure has been a time of catching up on regular and planned (with the GP) checks.

I have recently had:

bone density scan: next in 2 years

  • mammogram & ultrasound: screening mammogram was due in November 2021 (I use my even numbered birthdays to remember) but some symptoms I had recently prompted this being brought forward (result: all fine) 
  • I have had a shingles vaccine. If you are an Australian aged between 70 and 79 you are eligible for a free vaccine. My husband got his at 70. I paid for mine in my late 60s as I never ever wanted to have the debilitating pain again.
  • We have had our first doses of Astra Zeneca – 2nd one due in June. No issues for either of us.
  • We have also have our flu vax and no side effects.
  • Haven’t needed another Covid test since late last year. All negative for all tests in 2020.
  • I have had a 12 month skin check with just some small cancers burned off my cheek. Not so happy with the skin doctor and may seek another referral.
  • I am going very well since my rectopexy and subsequent 2nd surgery for wound issues and happy to say, I have not (fingers crossed) had any I.B.S. since then. Yay!! Life changing. 
  • I remain emotionally pretty well but having a couple of sessions with a psychologist as I have noted some post-retirement (2002 from school principal role) and other events (transition to retirement and cancer) are rising up as traumatic memories so it’s better to deal with those than hide behind pretending I am OK. Getting help is important.
  • My left index finger – am left handed- has two areas of arthritis and GP sent me to cortisone injection in near each joint. One done, one next week. Still sore from process but hoping over time it helps.
  • Each time I smile, I remind myself of how grateful I am that I can smile properly!

Head and Neck Cancer Update.

Over four years ago I received the news of the rare cancer inside my upper gums and under top lip. The story is here. As this post goes out one week after that anniversary I wrote this good news update on Wednesday 19th May on Facebook. I had been for my 6 month prosthodontist check. Last September my head and neck surgeon told me he didn’t want to see me for a year.

Just over 4 years ago I was told I had a rare cancer in my gums & under my top lip. I came here, as I had at other times, some days later in May 2017 to reflect & to wonder as well as to try to lessen my anxiety about what would come.
Over those years of 4 surgeries, many trips to the prosthodontist & lots of TIME to heal in between this place remained a favourite to reflect. Mackenzie Reserve Budgewoi.
This week I am immensely grateful to be well. Entering my 5th year. On Tuesday my 6 month mouth/upper prosthesis check at Westmead along with CT scan indicate all is well. My care of my mouth needs a small upgrade! Twice a day with waterpik, micro brushes & piksters to help my 8 remaining teeth stay OK.
Having this news, I wanted to share here how good it is to be this well, living with the after effects of my reconstruction as well as I can.
Thanks to my husband, family & friends along with my health professionals who buoyed me along the way.
With My Prosthodontist on Tuesday. I said to him, I remember crying through some of my first appointment with you (May 2017) and he said “I do too”. Now, look at us!!
That’s my rather significant wrap for Self Care this time round.
How are you going?
Denyse.
Copyright © 2021 denysewhelan.com.au – All rights reserved.

Link Up #241

Life This Week. Link Up #241

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

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

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

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

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

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

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Telling My Story. Chapter 24. June 2018 – 2019. Part 2/2. 56/2021.

Telling My Story. Chapter 24. June 2018 – 2019. Part 2/2. 56/2021.

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 Four. Telling the story in two parts. Today is Part 2.

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.

Tah Dah! This Chapter’s 2nd Part IS the last….for now…and into 2021 of Telling My Story. Only took 4 years!! 

The overriding memory I have of this period in my life is change. Change for the good. Change in my outlook as I moved further away from cancer surgeries and recoveries towards L I F E as I wanted to have lived it in retirement but far too many things were in the way. The series year of 2015 and 2015 tell more.

So, as best as I can, this rounding up of Part 2, thus ending my publication is going to have more photos and memories along with, fewer words.

Are you ready to come along?

Early April 2019.

As my confidence shot up and I was prepared  drive to places and see things I wanted to see and experience, Newcastle Writers Festival headed the list. A conversation (longish on twitter) with author Trent Dalton ended up with me LOVING Boy Swallows Universe and he would be there on the Sunday I was. However, I had booked to hear my long time friend & author Rick Morton speak on his first book One Hundred Years of Dirt and have a catch up if I could. I met my blogging friend Lisa for early/late lunch and we went to Rick’s session. I had also booked to see Jane Caro speak on her ground  breaking book Accidental Feminists which I had devoured. I hadn’t see Jane in real life but we were well known to each other from social media.

What a day!

The upshot.

This.

But wait there was more…I was stoked for this resurgence of my social life. Admittedly I was very tired and it was a challenge to find something to eat because of my mouth…but I was out there again. Yay. I also needed more than ever to calm and find peace within and I turned always to my art desk to find or create a new project.

Late April, Mother’s Day and into  May.

During the April school holidays, which coincided with Easter and one granddaughter’s birthday, so we entertained with great delight..always love seeing our family.

My daughter and I met at Berkelouw’s for Mother’s Day brunch morning tea and we rarely get ‘two of is catch ups. So that was awesome. My 2 year anniversary of head and neck cancer diagnosis was coming and my husband and I celebrated at one of our favourite places for morning tea. Then he said “time for your apple watch isn’t it?” YES. Please. Thank you. I had just joined a moving/walking challenge with the Department of Education so that was going to motivate me too.

About An Idea: Women of Courage.

Having read Jane’s book (listened via Audible too) and then seeing her interviewed about the findings and that women, are/were in general and in life, doing so much unsaid, unpaid work that it was women who suffered more in latter years because of separation/divorce settlements all favouring men. Her concern which is serious and major, and verified over time is that women, in Australia, over 55 are becoming the highest number and fastest growing cohort of the homeless.

Now, whilst I would like to have fixed all the issues Jane raised, and of course I could not, I did have this idea. It seemed to me that we women might feel empowered somewhat if there was a way to share some of our stories…as I saw them, of courage. That was it.

Women of Courage.

I knew many of there people, but would they be prepared to share something about themselves along this line. I set no targets, I asked politely, and received no for an answer with respect. I kept a list of those I approached on line with my proposal and by the time my launch time arrived I was ready with a great set of responses.

The first post, was mine, via introduction, and then it was time for Sam to share her story,

Ready steady….Women of Courage

In the weeks, then months that followed I pressed publish on  24 personally named posts and  one anonymous post in 2019.

I decided to stop sharing before December as I knew there would be fewer readers and then was ready to kick off again with Jane’s post

and onto 25 from named sources and 4 anonymous ones until it closed as series in September 2020.

This year, I am re-launching soon. 2021 series. From mid May…I like that time of year! Here is where all of the Women of Courage posts are.

June, July, August…..2019.

  • I can remember we had visitors for school holidays, my husband was unwell for some weeks with the flu even though the diagnosis took a while, I continued with my trips back and forth to Sydney to see the Prosthodontist less regularly but still needing reassurance and care…

 

  • I drove to Sydney in June and stayed overnight to see Vivid Light Festival from the harbour and to go to an event to celebrate the great work of the late Professor Chris O’Brien at the cancer care centre named for him. It was on this occasion I realised how hard it is for a post-surgery me to find food to eat unless I bring my own. I still grapple with this today.

 

  • I also made a quick trip to near where we used to live after a Westmead appointment and had an impromptu catch up with my daughter and granddaughter and a ride on the new-t0-me light rail.

 

  • I did quite a bit of cooking – as usual – because I need to cook for my needs. I also joined in the Soup for Soul Fundraising for then Beyond Five with my local Central Coast Head and Neck Cancer group with batches of small cupcakes. We did not know of course, that Covid, the following year would shut down all such gatherings, even restricting visitors to hospital to one for a patient or even no-one could accompany an adult.
  • I met with my local federal M.P. Emma McBride to get her support for World Head and Neck Cancer Day on 27 July. That is the date for it world-wide. I also shared more each week leading up to the date via my blog and social media in my role as an Ambassador.

Braver and braver and being prepared to say YES first rather than no continued to increase my ability to not only do hard things but to see them as small accomplishments building upon each other which is at the heart of exposure therapy.

Some Highlights: June to November 2019.

  1. Staying solo overnight in Sydney: to attend Vivid and then a conference the next day just as a supporter
  2. Driving to Hunter Valley Gardens to view what I had read much about
  3. Deciding that I really wanted to celebrate being 70 later in the year
  4. Getting great cancer checks with all GOOD news and not being as fearful of cancer’s return
  5. Becoming more interested in sharing what I could with the wider community: resources I made to The Big Hug Box and to Arterie at Lifehouse but also stopping when it became a little more of an overload
  6. Planning that I would like to invite blogging and social media friends to a morning tea to for me…turning 70 and being vulnerable enough to send invitations…Everyone actually said YES but on the day for a range of reasons sadly 3 could not come.
  7. Dealing with disappointment in a less personal way.
  8. Learning that living with I.B.S. and some incontinence might be a package* that came with ageing…and making allowances for myself with that. *In May – August 2020 I found a solution via surgery I was too scared to ponder in 2019 and I am well.

On Turning 70. 

Before my 70th Birthday, I drove to my granddaughter’s school (and daughter’s school)  to attend their Open Day. Loved celebrating gratitude for my life here:

  • Rather than dreading another zero birthday I celebrated with gratitude.
  • I visited my father a few days after my birthday to have cake and coffee with him and my brother
  • My actual birthday was the Saturday when our family came for lunch. Our daughter and her adult offspring, one with partner and her youngster and our son with his four.
  • My husband and I did the catering and our daughter made a cake.
  • It truly was a celebration of LIFE and to have this with those who loved me (vice versa) made it so special
  • A few days before I met with my social media/blogging friends too.
  • I received, unexpectedly, cards, flowers and kind gifts.

Loved this big surprise.

Lovely portraits of our 8 grandkids

 

Christmas 2019 Was Different.

After the loveliness of my birthday I was well-satisfied but getting more brave in my continued intentions to push myself further. This was when I agreed that we (husband and I) would drive to Sydney on Christmas Day – something I had always vowed would be too stressful) and enjoy a family lunch. Our son said to drop in on the way down as he would have his kids on Christmas morning. All good.

Unfortunately to his disappointment most of all, my husband had over-exerted himself the day before finishing off some outdoor work and was exhausted and completely unwell so I made the trip solo.

I remained determined to do this though on behalf of us both and to see the family. I even managed to  eat some Christmas lunch. Yay for being careful but also being adventurous.

Onward into 2020 with Gratitude.

I accepted this would be word for 2020.

I had already done a 30 days of gratitude challenge leading to my 70th Birthday.

I knew finding something to be grateful for each day was a good thing to do for my health.

Of course I did not know ahead of this just how much challenge 2020 would bring!

 

I actually blogged 2020 in 3 parts last year  for Telling My Story because I wanted to remember it well.

Here is the link to each post.

Part One 2020

Part Two 2020

Part Three 2020

Thank you for following my story. See how my avatar has changed in that time.

 

This is the ‘last one’ for quite some time.

The weekend before this post went live, I finally had all the printed copies of each post put in order, in two folders. They are evidence of My Life…as told via Telling My Story 1949 —-> and even if no-one else other than The Author reads them, I am so glad to have persisted!
They are located in the bookshelf along with other life records: my career in education, my cancer story and updates and family tree info.

Warm wishes,

Denyse.

Joining with Natalie here for Weekend Coffee Share.

 

 

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Telling My Story. Chapter 24. June 2018-2019. Pt 1/2. 52/2021.

Telling My Story. Chapter 24. June 2018-2019. Pt 1/2. 52/2021.

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 Four. Telling the story in two parts. Today is Part 1.

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.

THIS post is the second last in the series. Part Two is in a week’s time. Thank you to all who have been reading and commenting on my recent posts about my life since head and neck cancer. I appreciate each and every one of you and your kindness. It helps me understand my need for connection and blogging does that for me. Warmest wishes to you all. Denyse.

 

June into July 2018.

About my mouth.

This is the month after what I hoped would be the final reconstructive surgery…(still is)….and it was winter, busy and I spent even more time, alone (happily) in my red car, driving BACK and FORTH to Westmead Oral Sciences…because…. T E E T H!

Obviously healing has to take place, and the work of this next stent, the one to push my top lip out more needed lots of T I M E.

You know, that thing you have to be P A T I E N T about when you are one!

During the visits to the prosthodontist, which could vary in time ‘in the chair’ from 2 to 4 hours, I listened to audio books at the boring times of having 2 lots of hands in my mouth…and used to ‘fiddle with’ my bracelets, or even a small crystal. I was not ever nervous but my boredom could lead to anxiety and so it was best I used strategies of distraction and relaxation. I was always very tired after my day spent at Westmead and soon learned to give myself a day off afterwards.

Nevertheless, I knew that my prosthodontist was working at all he could to get my new upper prosthesis prepared for when my mouth was.

Daily Routine Helped.

As I had started with photo taking in late 2017 for a daily outfit shot, and then going somewhere for coffee, this became a given as part of my routine to see me dress well, and engage with the wider world outside home. I still do this, no longer with daily photos but it is embedded in my self-care strategies.

Life went on.

In between times, I did not sit around.

Actually I do not doing sitting around very well.

I still had my daily routine of an outfit photo and usually went out for coffee. I went to view nature and I became increasingly interested in helping with spreading the word of head and neck cancer. I also found The Big Hug Box and offered to make bookmarks and loved using my art for good. I ventured an idea to the local library – can’t recall which month but it was with a view to me running a mindful mandala making course.

I even put a ‘how to’ on the blog. Teacher me was re-emerging.

School Holidays. Visitors. 

It was a treat to see our grandchildren when their parents could arrange a visit and on one occasion we had a late birthday celebration. I made sure I had some art and craft for the four of them to do and we spent a very pleasant day in the winter sunshine.

I continued to be out and taking photos and it was good for me to re-visit places where I held special memories of seeking solace and comfort.

 

Head and Neck Cancer: Sharing The News.

As I was someone who had no idea of this rare cancer when diagnosed, I wanted to make others aware, but I also know my Professor Jonathan Clark and others had begun Beyond Five to do just that. Finally, as July approached and with it, World Head and Neck Cancer Day on 27 July I swung into action. Beyond Five sent me some ribbons and brochures and I made contact with my local federal M.P. Emma McBride and she visited us at home to find out more. Emma remains interested in sharing. I also approached our doctors and dentist with a view to sharing my “wellness” and asking them to display information. It seemed like I wanted to give back.

I did.

Thank You: No Words Are Enough.

 In the year since I had been diagnosed, after my dentist has removed the bridge in April 2017, and I had the biopsy done by the oral surgeon in May 2017, I really wanted to share with them how I was. So, I did. In two personal visits. I have done this once more to the Oral Surgeon’s since and of course I see my Dentist each 6 months.

World Head and Neck Cancer Day and Meeting The Central Coast HNC Support Group.

My M.P. had written an article about me and head and neck cancer and it was within days of that, I was contacted by Lisa Shailer, from Central Coast Cancer Centre, who looks after newly diagnosed head and neck cancer patients. She invited me to the first Soup for the Soul event at Gosford hospital’s Cancer Centre and that was where my involvement with the local group commenced. It was also the first time I had met anyone else with a head and neck cancer.

August 2018. How LONG?

On 6th August, as my patience was really, really wearing thin …to get this upper prosthesis, I celebrated our daughter’s birthday with a S M I L E.…and the race for this to be ready and in my mouth began. I was so over it. I thought this would be such a change for me when it happened, I even made up a list of what crunchy foods I would try again. (Dear reader…it was not how she thought it would be)

After more trips up and down the M1, I sensed that 21 August was to be THE day and dressed up  a little bit more. It was. The day. It felt weird and good.

I smiled for a LOOOOONNNNNGGGG time.

First time I smiled….

 

After an adjustment from my prosthodontist.

September into October 2018.

I Could Not Stop SMILING.

Even though I had “teeth” screwed into my upper jaw in August, there were still quite a lot of adjustments to be made to the prosthesis by my prosthodontist at Westmead so that meant more trips to him. He was also making a bottom partial denture of a molar on each side, to clip onto my remaining 8 natural teeth to have better biting and chewing.

I sent a photo of me to my head and neck surgeon and he was amazed at the outcome too. So cool. I had my check up and he was so happy for me as were the other people who were part of my surgeries and healing times. I met with Nadia, CEO of Beyond Five as a potential Ambassador, and on the same day said hello and thank you to Gail O’Brien, wife of the late Professor Chris O’Brien, for her husband’s vision for his one-stop Cancer Care Centre, Lifehouse.

What it was not.

No way does it replicate my own teeth. However, I took some time to get used to that as well as speaking because my mouth was now more full of ‘hardware’. Eating was tricky – and still can be – as different foods required more chewing than expected and others were just too sharp or crusty for me to be able to manage. I also found (and find) I need something slippery to help the food go down.

BUT I had my SMILE back. And that was so good.

I was invited to share my story  at the Central Coast Head and Neck Cancer Support Group and used my long lost power point and Uni tutor skills to do so. It was well-received.

I visited family with greater confidence. Trips to Sydney were ones where I once only had emotional capacity to deal with the treatments but now I was getting more brave and doing hard things.

I met people for a long awaited catch up. I saw Dad more. I visited places where I had grown up. It was GOOD to be out and about and not all about head and neck cancer. I went to a Look Good Feel Good self care workshop but was a little disappointed that its relevance to me was little. Understandably my cancer it rare, but the 90% effort on the day was placed with those with hair loss from chemo and in general were for breast cancer survivors. I appreciate that my cancer is not visible either.

November into December 2018.

Invited to become an Ambassador for then Beyond Five, now Head and Neck Cancer Australia. This was a huge honour and so good to know I could be helpful using my education background and my personal experience of being a head and neck cancer patient. I met with the CEO, Nadia and Inaugural Ambassador Julie McCrossin at Chris O’Brien Lifehouse.

Back to schools!

I was invited to my granddaughter’s grandparents’ day and I went. I would not have envisaged doing this in the previous few years but handling my head and neck cancer recovery encourage me to use my new skills of confidence and greater resilience. It was great. I loved being back in a school. Then I visited my daughter at her school. Very proud to see the library she started from Day One of that new school.

Because of a blunder made in 2003 on my Service Medal, by the NSW Dept of Education at my retirement (when I had to due to work place issues and no chance for medical retirement) I tweeted about it once and my principal friend John Goh noticed and he retweeted it and the NSW Dept of Education Deputy Secretary saw it, and emailed me “we can fix this Denyse”….and the story of that is told here. So good to have my career recognised properly for me.

We hosted Christmas.

We had not had our family gather with us for Christmas for quite some years. Then for 2018 our daughter and her kids suggested coming to our place as they were mid house move. Again, bravely, I said YES and we were delighted to do so. I also had another Santa photo taken and when asked what did I want for Christmas I said “I already have it, I am cancer free and well.”

What Would 2019 Bring?

January 2019.

Birthdays!

Always birthdays first…my Dad…95

Then our son 40

And our grandson 18.

I didn’t see Dad on the day but had photos sent. Our son and his four kids came for a lunch and we made sure there was cake and candles. Our daughter had an 18th Birthday family lunch for her boy at her new place and we were delighted to attend.

We had not driven down the way – north western Sydney – since we last lived there and the changes are extreme. Former paddocks and dairy farms are cheek by jowl housing and that is the way these days I guess. Also is a reason traffic wise, why my husband was glad to be out of Sydney.

February 2019.

Busy month to begin with the first meeting in 2019 for Central Coast Head and Neck Cancer Support Group where M.P. Liesl Tesch, former Paralympian addressed us, sharing her story.

I continued to have check ups at Westmead for my mouth. In January of 2019 the upper prosthesis was removed – it is attached by 5 abutments (tiny screws) that are in my reconstructed jaw, for minor adjustments. As you may imagine, it is a challenge for something to fit well (and perfectly) so it meant trips to Westmead for this. As time went on though, my physical care of the prosthesis with waterpik and micro brushes – getting debris away from the abutments and gums, it has not needed removal since then. In fact, I can barely believe how well I have been able to maintain this because it’s something quite new.

I also found out, that the pain I often have in various parts of my mouth inside is all part of the body getting used to what is in there. After all, it’s got my leg bits inside. My team and being published as a story on Beyond Five.

My husband turned 70. He is the original no fuss man. However, we had hoped for a small family lunch. His body has different plans and we could not go ahead as he was unwell. Nevertheless he received family love and best wishes and we caught up with family later.

A wee tribute to him…..HE got me through so many of those really hard days early in my diagnosis. His counselling skills were very much needed along with the loving and caring man he is. The night before my surgery on 6 July 2017, it was him sorting out where he would stay rather than the awful (for us) place where we had been recommended that helped calm me as I was concerned about his welfare while I was ‘unaware’ in I.C.U. Then when he visited me from home on the Central Coast, his very presence on the balcony of my room was so reassuring….love him, lots.

March into April 2019. 

Re-reading this post as I go, I am aware that it sounds like I was on the go, doing, doing and recovering and doing even more. In some ways I was. It felt SO good to be getting better after almost 2 years. It was though one of those situations with me where I.B.S. would return when I was feeling particularly stressed. And that its pattern would be more likely after any stress event. Even the good ones. I had to learn to pace myself better.

I had to learn to add in time outside.

In nature.

Taking walks.

Being a fun photographer…and then also using my creative senses to enjoy art of some kind to fill my visual and kinaesthetic senses.

Remembering my late Mum’s death anniversary here.

Learning where to STOP..is here. Next time, will be Part Two: April – December 2019.

Reality of my reconstructed mouth….

And in the next part of Chapter 24, “this” concept changes into a plan for a blog series.

Thank you so much if you made it this far.

I appreciate that!

Denyse.

Joining with Natalie here for Weekend Coffee Share.

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