Thursday 30th June 2022

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. #70. Anonymous.107/2021.

Women of Courage Series. #70. Anonymous.107/2021.

 

Two years ago… 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 into September 2021 when it will conclude.

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

Trigger Warning: Abuse, Children, Mental Health.
There are websites at the conclusion of this post recommended by Anonymous in conjunction with my intention for this blog’s policies.

 

 

 

Woman of Courage #70  has chosen to be anonymous. There will be no replies from this poster.

She will, however, be reading and I will be responding as I always do to readers’ comments.

Thank you for your understanding.

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

 

Growing up as a child I was faced with a lot of obstacles and situations when courage would have been best used but unfortunately it wasn’t.

I was a victim of a certain abuse by a close family member (like some victims unfortunately are).

Though I like to call myself a ‘survivor’ now instead.

I was quite young at the time and was put in a very vulnerable situation.

Sadly I did not have the courage to speak up about what had happened at the time.

A few years on, I started to see that if courage didn’t show its face soon more pain was to be brought.

So I found a small voice inside of me and told ‘Parent A’.

It was a shock to everyone and had some people unsure of what or who to believe.

The breaking of this news would be the end of something not so great and the start of something a little better.

But I began to understand the value of being courageous because as soon as I told someone, I wasn’t alone anymore.

 

 

How did this change you in any way?

 

Speaking up about what had occurred even just for the first time to Parent A, was a huge life changing moment for me.

I was never one to speak up as a kid.

Always felt the expectation to be the good girl and to just do what I am told.

To have found this voice and still be only just blooming into my teens was a stun to me.

I experienced a lot of character building from using my voice in times of need.

I was, and still kind of am to this day, one to hide away when things get hard.

But that moment, that day, would be the first of many courageous moments.

I feel that if I never spoke up then, I wouldn’t be able to use my voice as strongly as I do now.

The more I let myself be courageous when I needed to be most, in both positive and negative situations, it became easier as time went on.

 

 

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

 

I have definitely learnt from this situation as soon as you tell someone what’s going on, whether they don’t listen/respond or in any way care, you’ve told that person, they now know that information as well.

So you’re no longer alone.

Yes it would be best for them to listen intently and help you out to show they care but sometimes that’s not always the case.

And I learnt that  when I spoke up for the first time, Parent A technically didn’t believe what I had confessed.

And as much as that was a kick in the gut it still felt so good to finally say something.

So in recommendation, I guess I would say, as scary as having courage is and particularly in a situation of confession, just speak.

Even if the words don’t make sense at first just keep talking!

Just keep fuelling your courage and take care of it by standing up for what’s best in times that need it.

The hardest thing to learn is to accept that it’s a process, unfortunately gaining courage doesn’t happen overnight.

But it will come to you and continue to grow when you take care of yourself and wellbeing.

 

 

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

 

As previously stated, I definitely believe I could be courageous, and maybe even more so, in the moments that call for it.

I learnt a lot of huge life lessons as a kid and it helped me surround myself with the right people as I grew up.

I still struggle daily to use courage but I am way less afraid of it.

I have an extremely supportive partner who constantly teaches me that it is okay to speak up, that it is okay to have an opinion, that it is okay not to like something and say that aloud.

Every time I allow myself to be courageous, I can feel less of the weight on my shoulders.

I’ve also learnt that each time you use your courage you definitely become less fearful of the world and what’s around you.

 

 

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

 

If you ever find yourself in a situation and a burst of courage is needed, take a deep breath and close your eyes and visualize the bigger picture.

Courage obviously does not have to be used only in negative situations.

But when faced with a negative circumstance and you need that bit of courage to keep yourself safe and content, a quick breather to analyse the situation before responding has helped me.

I always, and will admit sometimes I still do, think that the worse outcome is the only outcome possible.

But I’ve learnt over the years that if you choose to use courage in those particular situations you can have a better outcome.

And to just remember at the end of the day to be courageous is a choice, it just takes that little bit of faith.

 

Don’t ever be afraid to speak up, someone will always be there for you. And sometimes there’s even more people there for you than you think.

Thank you Anonymous for having the courage also to share your story. The readers and I would agree, I think,  that you are indeed a woman of courage. This poster is safe and well and in a secure relationship with a long term partner.

Sending all the best to you.

 

Denyse.

 

 

 

Recommended Sites: these are Australian sites.

 

Joining with Natalie here for Weekend Coffee Share.

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