Sunday 26th June 2022

‘Being Me’ In The Month That Was May. 35/2022.

‘Being Me’ In The Month That Was May. 35/2022.

Since I decided to join in this link up each month, I am also adding my post for ‘the month that was’…and what a month it turned out to be!

MAY 2022

Word Of the Year Link Up Party.

Joining in with these kind bloggers:

hosted by friends Deb, Sue,  Donna and  Jo too.

You too can join in, clicking on one the above links:

Look for this image, and add your post.

Those who follow this blog, and know me from either on-line conversations or in real life, will know that my highest (in terms of importance) value in life is ‘honesty’. And that has seen me make some choices to live better with ME!!

I guess another way of putting it, is to be ‘true to myself’.

I have been blogging for well over 11 years and seen so much change in this time. I have always reflected on what I want my blog and me to represent and along with honesty, comes vulnerability, truth telling and giving thanks.

So BEing ME has meant some reflection and change making…

Saw a recent Instagram hashtag  about ageing and owning up by #speakingyourage (words to that effect) and I have never been someone to hide my age…so this is something I do easily. Here:

 

And then just this week, to be honest, the work that was having a blog link up suddenly (or maybe stealthily) was not anything I wanted to do any more. I could have been someone who soldiered on, but that’s not me either. So, without anything else to add, here is the message to my blogging community…..

Well, now what has that meant for BEing ME?

A few changes within and they feel good.

I have reduced my in-person involvement with Head and Neck Cancer Australia and feel better for this.

I have decided to blog when I want to…and there have been examples of this recently.

I am allowing myself to feel uncomfortable too as changes like these are made. Instead of the old thinking of must get everyone’s approval I am being my own best friend and remembering what I REALLY want to do and be…and again, it’s part of my value system.

MAY MEMORIES.

FIVE years on from my cancer diagnosis was always going to be remembered and celebrated! I added a memento in the form of a bracelet with hearts on 17 May 2022 at 9.35 am. And wrote a post here. 

 

The feelings and experiences here are part of why I am very grateful to be well…following 5 years of recovering from a rare oral cancer…and I make the very most of all the in-person connections we can have with family. We had a lovely catch up here after 4 months.

Our son’s 4. We cared for these kids for years…sadly not Miss in heart top as she was born after we left Sydney.

Then there is this photo which means so much for my healthy recovery and emotional connections. Our four grandkids visited me just after surgery #1 (the big one) in August 2017, so I asked them to do a re-creation with me in May 2022. Love this!!

And that will do for now. I have been to see Dad in Dee Why twice in May and am enjoying the frank chats and helpful conversations we both have to better understand and appreciate each other and our similarities and differences. No more photos from him though. Fair enough! And no, he does not want to live to 100…..I get that.

How was your month of May..not quite finished of course…

And are you  using a word or words in 2022 like I am?

Denyse.

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Grieving For My Body’s Losses from Head & Neck Cancer. 8/51. #LifeThisWeek. 10/2022.

Grieving For My Body’s Losses from Head & Neck Cancer. 8/51. #LifeThisWeek. 10/2022.

CW: images from my head and neck cancer.

This post talks about my grief and trauma before and following my cancer diagnosis.

There are images that may be confronting.

 

Links and phone contacts are here:

https://www.cancercouncil.com.au/cancer-information/advanced-cancer/grief/seeking-support/

Cancer Council: 13 11 20

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

Beyond Blue: 1300 22 46 36

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

Lifeline: 13 11 14

 

Before you read on, which I hope you will,  I am  doing well.

This post, however, has been one I have needed to write, probably for some time but it was not till recently did this need become apparent.

Warm wishes, Denyse.

 

It’s a shock to the system when you are told

we will be removing all of the upper part of your mouth and replacing it with a bone, flesh and skin from your leg“.

And to be honest, it has taken me till recent months in 2021 into 2022 to understand this has been a traumatic experience and that I am, in some ways, managing a post-traumatic event.

So here goes. Blogging and sharing has always helped me.

I hope it can be seen as a way to not only get something said but for me to now divulge what a struggle it is at times to live with the ramifications of my head and neck cancer.

May 2017: following my diagnosis the day before and meeting with the men who would form my team and perform the surgery at Chris O’Brien Lifehouse.

My particular cancer, a verrucous carcinoma was in the upper alveolus. Explained here. And the cancer had spread to upper top lip – see left.

After the 2.5 hours of examination – lighted tube down my nose, examination of all areas where cancer might have spread and of course inside my mouth I received the news of how this cancer would be removed.

And that was too much for my emotional system to bear for then…so B and I had a walk along the short corridor to stand here and for me to take a 1/4 valium, a sip of water and to view this scene…

 

and then come back to hear more about the surgery and the ‘what comes next’. I was asked if I was fit to sign and yes I was. I had no idea of some of the words’ meaning but over time I would.

So about the grief then…..2017 into 2018 and when I got my upper prosthesis.

I actually felt relief as an emotion more because I finally had an answer to what was going on in my mouth for the past year or more. I also began to feel confident that this team of specialists was there to do the right thing by me always. My husband, my biggest supporter, agreed.

I blogged. And in June 2017, I wrote this….adding now, as it helps me recall the downright fear:

When I wrote this post I thought I was managing myself quite well. Since then, I have had some pretty horrid days (and nights) where I have become fearful, panicked, and so vulnerable I wanted to go into a corner and hide and never come out.

I am shitscared right now.

I am worried about losing what I valued: my mouth where I speak, eat, share my emotions and smile. It has been days of crying uncontrollably, being held until I calm down (thank you dear B) and taking some valium (which I don’t really want to) and letting out the fears  in words between the sobs. 

I fear: the loss of ability to use my mouth for at least 7-10 days, have a naso-gastric feeding tube down my throat for those days, having the skin/flesh/bone from my right leg inside my mouth after 3/4 (I did not know then it would be ALL) of my upper jaw/palate as been removed. Dealing with the not being in control.

I am, as I write, unable to really express what it means to be facing this loss of control of my body. I will be in ICU to start and may even have a tracheostomy to start if the mouth is too swollen. This is very scary to me, and I am admitting it now.

For me to admit how vulnerable I feel right now is to say “I cannot do this without help”.

  • I know I did some reflecting.
  • I also know it took me a while to get my paperwork done at home.
  • I also got ‘butterflies’ in my tummy each time I had the thought ‘I have cancer.’
  • I did some blogging about it too. However, I remember thinking “I don’t want to be known as a cancer blogger”.
  • I thought, and it was mostly correct, that I could write about much more than my cancer, and I did but I did not take into account some of the feelings I may have pushed away…because I wanted to look like and sound like I was managing very well indeed. Almost true but not quite. Sigh.

But I was confident, from the ways in which my professional team described their views, that my cancer was likely to be taken away and most probably not return.

I did not know in the early months, and post the big reconstruction surgery in July 2017 that I would face LONG times in recovery in hospital and at home.

Months

Into over a year.

Four surgeries in total.

Countless cancer checks and times at the prosthodontist : all requiring a 2 hour drive there and back. I did all solo from March 2018 and one with B in 2020.

I found I had more resilience and determination than I knew.

I found I had patience but it too wore thin as I was in a pretty constant state of:

hunger

for foods I could not eat…and so I had to become very creative. See posts here.

Counselling and Help For Me.

Before I was diagnosed with head and neck cancer I had been successfully managing my mental health with a wonderful psychologist in 2016 and into 2017. In fact I saw her before my first surgery and she already could tell I had the many tools needed to deal with what was ahead. I saw her some months after my surgery and we both agreed I was going so well. I was, and that continued for some time. In fact I did go back last year to check in with another psychologist and after two sessions she and I agreed, that with my working through my feelings and more, I would be OK. I was and I am. But…further on…see what can happen!

What a Time: Getting my Upper Prosthesis Fitted. August – December 2018.

Such a big day on 21 August 2018 when I left home with no upper teeth and arrived back with them fitted. I was tired but happy even though they felt weird and sore. There were days and weeks spent back and forth to Westmead for physical adjustments.

Of course I was HAPPY. And of course I SMILED a lot. And was complimented over and over.

That is so nice.

It felt like a reward from the many months of hard yards of surgeries and recoveries and very limited eating.

I don’t think I stopped smiling. It was so life-affirming…yet…

my love of smiling and my smile itself drew me many positive comments and I sometimes felt I needed to share that the smile is actually not the whole story…this IS the blog post I needed to write now. 

However, by myself, there were small disappointments.

I thought (and I had been told!) that I could eat like I used to.

However that was not true I had a limited ability to bit and even more so for chewing.

The amount of physical hardware that is in my mouth meant amounts needed changing as did how long it would take me to eat.

Oh yes, I was still having my memories of 69+ years of eating and at times it would be a very disappointed me who could no longer:

  • eat at a dinner table other than my own
  • go out for a meal
  • eat in front of others – excluding my husband and family
  • use food and socialising together
  • go away to spend a night somewhere (we did but it was incredibly challenging to take all I needed with me)
  • take it for granted that I could eat a meal/snack as I imagined.

So this was the beginning of grief.…yearning for what was and had been and could be no longer….

I dealt with it mostly privately and made excuses to people who asked me to events and outings. Coffee and cake of some kind was still OK. Some people were/are very understanding and accommodating but I still did not truly accept what LIFE was for me now until late 2021.

I realised I was unwell and it was an overload of self-expectations and an unrealistic view of what I was now, as a 72 year old, living with the effects of head and neck cancer surgeries could do.

My body told me it was time to stop. Took me a while to listen!

Admission Of How I Was Feeling. Grief and Sadness. 

With so much gratitude for my return of health, following the diagnosis and being able to accept the role of an Ambassador for Head and Neck Cancer Australia, I did get many opportunities to share the awareness, the stories and more to help others. That sure did appeal to teacher-me. I have been incredibly fortunate to have my cancer removed and doing well. In fact, I guess I even have some survivor guilt. It IS a thing.

I was going well in covid times, as I was able to adapt and work through helping others with head and neck cancer and whilst we could not hold events, I remained a participant where necessary supporting others who have head and neck cancer, and doing what I could to bring my messages of  personal experiences to federal politicians.

Then this year, I became determined to listen more to my body and take better care of my emotional health and I learned that I can say “no thank you”.

It’s been hard.

I am, by nature a people pleaser and an extrovert but I also wore myself out. A post about Being Me is coming soon…and what I have done.

But before I go:

This is the point of what I wanted to say.

  • I am managing my grief now in a better way because I know it is safe to share
  • My times in nature are helpful, as is my reading about grief and cancer, along with my daily meditations

I am also telling more of the truth about what is.

Acceptance of does not mean ” loving” or even “liking” something or situation but when there is no choice..and fighting it makes it worse…then I accept that I have had a traumatic event in my life, and I now share with greater honesty.

And that whilst I have had many, many compliments about my recovery and my smile, it has been a much harder time than even I was prepared to own up to...

till a night this week when tears overwhelmed me as I realised the brutal way in which my body had to be changed…to rid me of a nasty cancer.

This series of images and then the culmination of a graphic goes some way for me to share with the world…my readers and bloggers how it really IS to have had this cancer and the aftermath.

It’s coming up to 5 years in May, since my diagnosis and that is probably playing a part in my looking back and seeing how this has been. I will never discount it as a life trauma now.

I accept it is.

I also know I can admit how hard things are. No longer hiding it.

 

This is the graphic which I made when I was feeling less than understood about how my cancer was affecting me…because it really has been MUCH more than getting a smile back. Much, much more involved.

Life’s traumas are not always obvious until later…somehow we keep going. I did till I stopped.

There are number and links for support listed at the beginning of this post.

I do hope you are OK and that reading this frank account from me has been something that you can see why I needed to share it.

I am doing well.

Thank you,

Denyse.

And I am visiting 98 year old Dad at Dee Why today so will be back to see the post later today and comment as well.

 

 

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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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