Sunday 22nd May 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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Courage, Exposure Challenges & Me. Part One. 2017.110.

Courage, Exposure Challenges & Me. Part One. 2017.110.

Background.

I have mentioned a while back here on the blog that for quite some time, IBS, fear of having to find a loo quickly, anxiety about travelling on the M1 to Sydney were all contributing to a heightened sense of anxiety and worry. So much so, that I found it stressful to have family here to visit and resisted entertaining people. This was further exacerbated very early in 2017 when some very hot days in NSW, seeing a HUGE line of cars which could not move on the M1 because of a major accident and my mind immediately imaging what it be like for me to even contemplate such a happening that I literally and figuratively FROZE with fear. My planned visit to my father’s in Sydney for his birthday in early January was cancelled. By me. Crying, sad and fearful me. I felt so guilty but I also felt incredibly relieved. Interesting!

What is exposure therapy, or as I like to call it ‘personal challenges’?

Here is some information:

Exposure therapy is often essential if you are to overcome your anxiety disorder. The cognitive behavioural treatment of  conditions such as: panic with agoraphobia, simple phobias, social anxiety, obsessive compulsive disorder and post traumatic stress usually entails an exposure component.That is, you must subject yourself to the situations you are worried about in order to beat anxiety.
Although this sounds frightening, your therapist will give you the tools to cope with confronting your fears (e.g. rational thinking, slow breathing and isometric relaxation).

The guidelines for exposure therapy are that the sessions must be
* graded
* repeated and regular
* prolonged

Graded:
 Your therapist will work with you to determine what would be an appropriate first step; it should be difficult enough to provoke some fear but easy enough for you to be fairly confident you can do it. Once you can cope with Step 1 confidently, then you can move onto a more difficult situation and gradually work up your most feared scenarios.

Source: http://www.anxietyaustralia.com.au/exposure-therapy/

Shortly after my decision not to drive to see Dad, I summoned up enough courage to keep my next Psychologist appointment after I had been to my lovely GP to tell her what had happened. Rationally I knew what I was doing and feeling was not helping me but I could not escape from the rope fear and anxiety had wound around me. I also was NOT diagnosed with an anxiety disorder nor was I depressed but my behaviours and resistance to trying the challenge myself were making me (and I guess those who loved me) a bit frustrated but kindly not showing it much! I resisted even though I would tell my professionals I would give the exposure ideas a go in a graded sense it never seemed to me anyway, to be enough.

Some of the ways I was ‘convincing myself’ that things were going well. Deep down, I knew they needed to be better and only I could change that.

My Personal Challenges Getting Me Started. 

Recently I have been listening to Brene Brown on her Rising Strong – A Spiritual Practice CD and she talks of the stories we tell ourselves because our brain wants us to be rewarded with a shot of dopamine when we work out the story to fit the situation. It does not, however, mean that having that story makes you better or right. It IS just a story. I know I was telling myself many stories back in January to March. I know that they were wrong too but I could not even see myself being able to move further along the exposure challenge way. Until I HAD to.

Early April 2017. The BIG challenge after a few smaller but important ones.

It is no secret to readers here and Facebook followers and friends and family that my teeth, notably my upper jaw and gums had been giving me hell for about 8 months to this point. After some nervous but successfully personal challenges – driving on M1 to the Dentist, discussing what treatment I would need and back and forth, I faced 6th April. The day my hub would drive me to the dentist for a 1.5 hour extraction of both the bridge holding my 5 front teeth and the teeth themselves. I cannot lie that I was not scared. Not about the procedure actually but about whether my stress levels about IBS and worry of IBS would escalate. On the advice of our new then GP, I had valium and meds to counter any fears of IBS and with my hub taking me and staying in the same room with me, and listening to a CD of relaxation, I came through the biggest challenge I had to date.

How That One Event Helped Me Go to Sydney.

I drove home, alongside my caring husband, congratulating myself for having the courage to go beyond my fears and as it is said, do it anyway. I recuperated with relative ease and drove back by myself to the dentist after a week in a more relaxed and calm manner. It felt so good!  Then the so-called bigger challenge (exposure therapy-wise) was for me to drive to Sydney to see Dad. I do have to explain that it was because of ME I had to do this, not because of any pressure from him. He just wanted me to feel well and be less anxious. I did that drive, caught up with him, took him some meals and felt very pleased to have met the challenge!

So, there I went. Going well…but there was more, waiting around the corner…as regular readers know but I will continue next week!

Part Two Comes Next Week. 

Have you had anxiety or fears about doing some things in your life?

Have you overcome them?

Tell us about this.

Thank you for sharing!

I believe it IS important to share.

Denyse.

 

Joining with two blogging friends’ link-ups: Kylie here who hosts I Blog On Tuesdays and Leanne here who hosts Lovin’ Life each Thursday.

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