Friday 27th 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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Comments

  1. It was a very huge thing, and sometimes we can only narrow in on what we can manage but it is a very big picture with lots of difficult things to navigate. I like the Frost quote. It’s very apt. Glad you can look back on it now and work through all the emotions and feelings of loss.

    • Yes it was and is even as I look back and learn to live with what my body is like now. I now cannot….eat as I used to, even go out for a meal (as you already know) but I also am grateful to be here…not everyone gets that outcome.

      Balancing what I did to manage myself and how I came through is a credit to my work and to having a most supportive husband too.

      However, without acknowledging what the trauma it has been, I would be continuing to be puzzled with what’s going on. I have ONLY now in recent months called it trauma.

      Yes to that quote. No choice.

      Thanks so much for your kind words and understanding.

      Denyse.

  2. Well said, Denyse.

  3. Oh Densye, I wish I was there to give you a big hug and comfort. You have been through so much and it certainly takes time to process and recover. I know the last year with all of our problems has taken it’s toll physically and mentally on both Mike and I, so I can appreciate just a little of what you have been and are going through. Taking care of yourself, putting your interests first and being kind to yourself is not always easy but is definitely what you need at the moment. Sending love. xx

    • Thanks so much Sue for your understanding and offer of care and kindness. I needed it…and that is lovely.

      We CAN keep going, as you and M know but when the time is over, that IS when the emotional responses come. I know more than anyone, M is familiar with that from his past. I can only offer my best wishes to him.

      Yes, last year was awful but look now, as I see it anyway, how you and M are healing together.

      I do admit that I HAD to write of this so frankly because even I had been caught up with the far too positive comments about my smile and my courage.

      The comments from many were always caring but they somehow, over time, diminished for me what I had to share was much much harder than I had ever let on.

      Glad I did and now I can move forward with kinder self compassion.

      Thank you for your understanding.

      Denyse.

  4. I feel for you Denyse and can understand in some small way what the trauma is like for you. You have lived it though and are still living with the ramifications and coming up to 5 years is probably playing on your mind as you say. You have been so honest here and I can feel the pain you are holding and sharing with us. Thank you for sharing your thoughts and worries and I wish I could do something to help you through this time but you seem to know what you have to do. Take care and don’t underestimate the trauma your body and your mind has been through xx

    • Oh Debbie, I am so humbled by your words and your shared understanding of trauma because you have certainly lived with a few events in your life.

      It has taken me till recent months to realise this, along with having to leave my principal’s role as traumatic events. It is pretty typical of humans that we play this things down I think to keep us relatively safe till we can offload.

      I am fortunate that I could share in this arena just how it is and has been as yes, it’s a help for me (indeed!) but also a story for others to maybe consider for others. It will be going in my head and neck cancer series.

      I do think the 5 year thing had something to do with the trigger that allowed the tears to come and for me to admit to the why.

      Just having others like yourself read and respond is a great comfort. I am grateful for this blog for those reasons over and over.

      Thank you for your kindness and care,

      Denyse.

  5. Hi Denyse – this was such an honest and vulnerable post, and one I think you needed to write for yourself (and others) to honour the other side of your journey. You’ve been so positive about it all and grateful for the fact that you made it through, but that came at a high cost in a lot of other areas of your life. Years of pain, compromise, and pushing through always have a flow on affect and I’m so glad you’ve kept checking in with your mental health as well as your physical recovery.

    I think of the trauma and fallout I felt from my job loss and the impact it had on me – that was nothing compared to what you’ve faced and conquered! Be kind to yourself, take time to let all of this settle and to really accept your “new normal” that is complicated by living in these unsettled times – and just know that we all care for you and I’m sending you a long distance hug. xx

    • Ah thank you Leanne for your kind and heartfelt understanding of what I blogged about and why.

      Yes to the vulnerability part and needing to own our stories…(I know you know who I am quoting there)….

      I think as I found out from my time suffering burn out in my principal role, you can hang on for so long until you wonder ‘what’s going on?’ “Why am I sad/angry?” and it turns out those kinds of feelings are needing to be aired and shared..(not even a Brene quote, I made it up).

      And what better medium do we have in terms of doing this kind of thing safely and securely, sharing with friends who we trust from our blogging connections.

      I feel so much better having ALL of the story out now. Yes to managing via gratitude and keeping on doing the hard things but over time, the reality of LOSS to myself and my BODY being changed needed to be shared. Glad I listened to my ‘gut’.

      There are many times we have difficulties in life and it does not need to be a death of someone or a pet we mourn. It can be a job, a friendship change or even as in my case, a move to a new area…transitions are going to bring up feelings we need to own up to.

      I appreciate your hug and long distance care and connection.

      Thank you so much Leanne,

      Denyse.

  6. What you’ve been through has been traumatic and the accompanying grief takes as long as it takes to work through. With love… Jo

    • Yes it has been trauma but I didn’t label this cancer nor my work burnout as a principal as such till recently. Funny thing we humans can be…I wouldn’t say I was in denial, I just never thought what had happened was trauma.

      Now I do and I own up to it and that too helps me through.

      Thank you for your kindness and love,

      Denyse.

  7. Denyse, As I was reading your post, I kept wondering why we feel the need to always look strong, to say that we are fine when we’re really not, and to not share the truth with others who are going into the battle we faced. For me, I wondered at times if I was the only one feeling like I did, post reconstruction surgery. No one had really told me what to expect. I think you are courageous to share the emotional turmoil of cancer – the fear, the grief. There is so much strength and resilience in your story too. Thanks for sharing.

    • I am glad this resonated with you Patricia. I am certain we are not always ‘told’ everything…nor do we even think to ask because to get through our cancer treatments (which ever kind they are) we have to be obedient, strong, and prepared to do the hard yards.

      I admit there were offers of counselling in my early days but because I had learned the skills earlier with a terrific psychologist I felt no need and it was true. I had a very support spouse and he has counsellor training and I had some resilience in-built.

      What I had not factored in for some time…years now I guess, is the LOSS. The body. the ability to eat etc as I had and more. I was, I guess, supposed to be not only grateful to be alive but to be looking pretty good too.

      But that fell in on itself last week when I was considering that all so many people saw in me (and yes, I promoted it!) was a smiling woman. It was not until I went a bit deeper into my feelings about being seen as recovered with a nice smile. that I knew I had to own up to the losses.

      Hence the shock of some tears and then deciding how to share what I was experiencing. Hence the content warning…I couldn’t leave anything out.

      I thank you for your understanding and kind words too. Fellow survivor hey!

      Take care,

      Denyse.

  8. I know that I haven’t recognised how much something impacted me until long after – then when it clicks, the hindsight feels so obvious. Then I beat myself up for not knowing it sooner – which makes it harder to process. But I know I do this, so that’s one step towards stopping it.

    • YES to this! I understand completely how and why this happens…because we have always “soldiered on” as in that awful ad about cold meds.

      Here’s to you recognising and caring for your pain and conditions with greater awareness of the history….

      Thanks Vanessa,

      Denyse.

  9. This is such a vulnerable and honest post Denyse. Your pain is so clear in your writing. I think you have every right to feel trauma after what you’ve been through. The five year anniversary, I’m sure is very triggering, so do take care as it looms. Your self care is amazing and inspiring. I hope it gets you through the tough times. I feel your pain and would to be able to take it away for you.

    • Jennifer, thank you for such insight and warm words which have comforted me.

      I think acknowledging the grief…and then allowing myself to be with that pain as it happened last week, enabled me to bravely put this post together.

      I was, in the past, wanting to share the realities of the head and neck cancer story but left out what I thought might offend or concern readers. Now, of course, I know grief catches up with us. And I needed to acknowledge it.

      You are no stranger to grief and I so appreciate your kindness in words.

      Thank you so much, it means a lot to have a lovely blogging community.

      Denyse.

  10. Oh, Denyse, I can see how this is an important post for you to write. Cancer is truly a trauma to go through, and life after it is never the same – especially when it comes to head & neck cancer that often requires quite extensive surgeries with lasting effects, and that affect so many areas that are closely related to your identity with appearance, ability to smile, talk, etc. When I read the first part of this post about your trauma just after diagnosis, before surgery, I just wanted to come and give you a big hug.

    And what you said “I wanted to look/sound as if I was managing well” is important to mention. I don’t think it exists, to manage well in this situation. It’s a trauma for anyone who has to go through it, and every feeling and reaction is normal and ok.

    Thanks for sharing this part of your story. Sometimes it takes a while to realise what really has happened and how much it affected you other than the more obvious physical changes. These more rough parts of the cancer story also need to be told.

    • Thank you so much Susanne for your kind and perceptive words. Yes, I did need to write this post once I understood how I had gone through incredibly challenging and often brutal procedures (all in the name of getting rid of the cancer of course)….and I am very grateful for the skills and exceptional care of those in my surgical team.

      But to let this go by rather than acknowledge its effects on me now and into the future would be akin to sweeping it under the carpet.

      I have always tried to be an honest and open person here on the blog and in real life too of course, but the grief had not really made its way to the surface until I had overcome those many times of surgeries, healing and treatments.

      So, thank goodness for being able to share and to be surrounded by kindness from people I have ‘met’ via blogging.

      Your words and kindness are appreciated.

      Denyse.

  11. I think it is great that you are sharing your grief with us (even if it’s a bit more after the fact because you needed that time to process it yourself). All trauma causes grief and you’ve been through quite an ordeal. You are stronger because of it and I honestly think that every post you write is helping someone out there going through the same (or similar!) thing.

    • Yes I am glad I got through all of the surgeries and treatments before finally acknowledging the full extent of what had happened to my body.

      I think too, now on reflection that I probably could not have managed myself so well back then IF every step was also one of grief because I had to show up, and get through what needed to cure me and fix my mouth the best it could be done.

      Thanks Joanne for your kind words and insight. Much appreciated.

      Denyse.

  12. Hi Denyse. What you’ve been through is very much trauma and yes I can only imagine the grief that would go along with that. I honestly don’t think I could navigate what you have been through with as much grace and courage as you have. You really are an amazing person. I’m so happy that all is well now and hope that continues to be the case so you can enjoy life and all it has to offer! xo

    • Thank you so much Min. You like many have seen me through so much of this!

      I think in a way, I left it till now to really consider how major this was and what an assault it was on my body because during the 4 years, I needed all my energy and mindpower to deal with the events, recover and do as well as I could.

      I used the distraction from it all to get into my blog, art and going out each day and it wasn’t until everything settled, and quieted down that this grief rose up.

      I am glad it did too because without acknowledging it, as this post has tried to say, I would have not be completely honest.

      Your words are very kind and remember, as I have said before, none of us knows what we are capable of until we are “there”. I did have a couple of teary sessions initially at the prosthodontist from the shock of the diagnosis only a week before…and then over time, I got used to ‘how the treatment and recovery would happen.’

      Warm wishes to you too as you continue your way to better health.

      Denyse.

  13. I have followed you for some time now….and you are still my hero. My late husband fought head/neck cancer for two years before he finally succumbed. His was in the uvula and tonsils. I don’t know if I would have the courage that you had (and still have). Keep telling your story…HUGS!

    • Thanks so much Donna for your kind and caring words. I am so sorry your husband died from his head and neck cancer. It is a cruel cancer in so many ways. I often say to those who think they might not have the courage I had to face such a diagnosis and get through…I would have been one until I HAD to. You never know how much courage you can gather until you do.

      Thanks again for reading and being such a great cheerleader.
      Denyse.