Wednesday 18th 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.

 

 

Life This Week. 21.2.2022.

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Taking Stock.#5. 48/51. #LifeThisWeek. 128/2021.

Taking Stock.#5. 48/51. #LifeThisWeek. 128/2021.

This is the last taking stock  in 2021 and may not be another when in 2022.

So, as this could be the “last one” I am going to share here about my life as it is on the eve of my 72nd birthday.

And as Pema Chodron says here…..

I am grateful for all who have made a difference in my life. Not all people are represented here because I may not have had an image. So, here goes, using images to ‘match’ a word. And using my alphabetical list.

 

Admiring: those people who are the trained professionals in all allied health, surgery and more, and have cared for my health.

Becoming: a part of a family, grateful for the love, care and kindness of parents and grandparents since 1949!

Curious: about life and learning….always! 

Delighted: to meet up with on-line friends when I can.

Excited: that we will get to celebrate my birthday…..out for morning tea! It suits us both to do this…here’s a memory from 2018. If the rain stays away we will be going here again: a local nursery.

 

Feeling: that time is moving way too fast….that seems to happen after 70!

Goingto my Dad’s sometime in December to share some meals and treats. He’s certainly been the constant in my life…known me for more than 72 years!! This from my 71st birthday when I am not sure who was helping who stay on their feet. 

Helping: Head and Neck Cancer Australia as an Ambassador. I have held this volunteer role for 3 years and as I said to the CEO recently, “you got me for life“.

Imploring: people to keep an eye on anything (related to Head and Neck cancer* symptoms)  that might be not healing or increasing in pain. size and so on…and ensuring if a GP or dentist, doesn’t take it seriously, to seek out another option. *all cancers of course,  but these ones have no diagnostic tools.

Joking: No idea what was funny at Oxley lookout last year but this bloke is quite the joker….and this wife, is not always ready for his sense of humour! 

Keeping: this blog going into its 12th year is testament to my commitment but to the engagement of this blogging community even more! 

Loving: the freedom of days’ activities choice when retired. Sure, there is a routine of sorts, and yes, we get up by a certain time (not tellin’) …but no bosses!

Making: memories for me and others! By cards, photos and little albums. I love doing it too.

Next: I am too easily wanting to plan what is next yet, at the same time trying to stay in the present. The one thing for me is knowing where we will be living next year, and so far, the owners have agreed to us staying on. HOWEVER, the way real estate prices have risen here, houses in our street up by $200-300K in less than 4 years, we suspect we will get a rent rise. Sigh.

Observing: the places where I lived as a teen and older and having a deep appreciation for that time. 

 

Pleasing: to notice that I can continue to change some health habits slightly to be more health-aware in my ageing years.

Reading: the many and varied posts that YOU, my blogging friends, share here for Life This Week. We are, today, at #268 of the link up. And how I met some of my blogging friends two years ago.

Staying: on track with meditation. It will be 2 years without missing a session by end of 2021. I now do Daily Calm in the morning and another track in the evening. It still counts as one day! 

Trying: to remember all I am grateful for more than ever…not everyone gets the chance to continue living as I have post-cancer.

 

Understanding: that life is not static. Der. But sometimes when I don’t want things to change, I then remember that they change anyway so grasping to keep things are they are is not on. I have learned much about this thanks to meditation, and listening to a range of CDs from teachers of Buddhism and more. Very wise people..and we are all human. 

Viewing: old photos for this post and feeling the warmth of nostalgia but also heeding the point above! 

Welcoming: changes to Covid restrictions here in N.S.W. soon, with reduction of places where you need to sign in with QR code, and having the choice to wear a mask. We think, for now, we will continue to mask up if in a crowded shop or doctors’ surgery. Definitely needed recently at a Big Hug Box packing day. NB: hope with new strain variant, we will remain vigilent.

X- “X-tra grateful” to all of the women who shared their stories of courage. In the 3 years, more than 72 women shared their stories. Wow. I have included images of all who continue to blog and link up here fairly regularly. I “hope” I have you all in this group. Let me know, if I have missed you. 

Yes: to more plans to do ‘less’….and that sounds like a contradiction. In the meantime, here I am over decades of my life ‘doing’ what I most enjoy: connecting with those I care for and who love me. Perhaps a bit of a stretch re Former PM Julia Gillard, but she did thank me for my education roles. 

Z – Is there anyone else I need to show my gratitude and admiration for their part of my life? Yes, it’s an old image but the LOVE from this Papa to his only grandchildren cannot be surpassed. And the love we had for him is exemplified in my brother now being Papa to his 2 grandkids and that B became Papa when his eldest granddaughter couldn’t get her mouth around Grandpa, and out came “Pa-Pa” and it sure stuck.

Thank you all for reading, commenting and sharing your blog post today.

Take care,

Denyse.

 

Started Life This Week Link Up. Sept 2016.

Life This Week. #268

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Remember. 32/51. #LifeThisWeek. 97/2021.

Remember. 32/51. #LifeThisWeek. 97/2021.

Remember? Oh yes, that’s right. We had our daughter 50 years ago last week.

“50” years …wow. Indeed.

We became parents at 21. Mind, you back then 21 meant we were already working and in permanent employment with the N.S.W. Department of Education. My husband was in his 4th year as a teacher, I was in my 2nd. Now, I look at our granddaughters who are older (just) than 21 and in different employment and life-style situations than us. Not a judgement at all. It shows the ‘gap’. Our daughter was around 25 when she became a Mum and did not get permanent employment in teaching until some years after that.

 

Our daughter does not like the spotlight nor this amount of attention but I sense given it’s her 50th we are celebrating, and it’s lockdown, then all on-line I get some leeway! On the day, she was teaching remotely, supervising her grade (she is a relieving Asst Principal at the moment) and making sure her youngest stayed on task for home-learning

During the weeks before her birthday I posted a care pack of favourite biscuits to savour at home, and some presents and a card for the day. I also sent later on the two blog posts relating to her birth year and some memories in photo collages.

 

More times to remember…

We celebrated with a family zoom….can’t can share the  one image &  we did have fun.

She LOVED her birthday that was at home…with her whole school staff, arranging a staff meeting (all on zoom) to sing her Happy Birthday and they delivered little cakes and a huge bunch of flowers. I made her smile…with a beautiful message via instagram from our fave author Trent Dalton. He mentioned how much he values teachers too. Aww.

A few more photos to remember her stories before 50th Birthday.

1991. K at 20, with Mum & Me.

 

With her brother’s family and hers, our daughter managed this magical photo shoot. Always remember the sweet surprise when I got the big photo on canvas and book for my 70th birthday.

 

18th Birthday for only son. We enjoyed being back celebrating too. With the fam!

 

Thank you for our Anniversary Cake, K.

My Birthday cake made by my daughter.

 

Glad I got this shot! Thanks KT, I know it’s not your fave thing to do. Brunch by ourselves in Jan 2021. A rarer than rare occasion in covid.

 

Our first born with a first born Mum and fifth born Dad.

We love you and always remember how it was to become YOUR parents back in 1971!

Mum and Dad.

Link Up #252

Life This Week. Link Up #252

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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.

*Posts deemed by me, the owner of the blog & the link-up, to be unsuitable for my audience will be deleted without notice. These may include promotions, advertorials, sales and any that are overly religious or political or in any way offensive in nature.

* THANK you for linking up today! Next Week’s Optional Prompt: 22/51 Leaving. 31 May.

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