Oops. I Forgot to Grieve.

My Losses Around My Oral Cancer.

Welcome to Denyse Whelan Writes Here.

This is a confronting post in terms of images I am choosing to share. Read on if you are up for it.

Please be aware, they are ‘of me’ and what I now realise is a time of my life I have written about before, and shared on-line via my now defunct blog…but to help my health…this is a message I need to share.

Thank you.

I’ve recently been told I am emotionally exhausted…burnt out..by the last decade of my life, and the diagnosis (many surgeries, and treatment times) from May 2017 until being ‘signed’ off by my head and neck cancer surgeon in October 2022, is within that time.

HOWEVER, my husband and G.P. saw this in me that I had not (till now) acknowledged and began to accept as a huge loss and grieve that loss. It’s tough.

This post, as briefly as I can share, is about what I acknowledge happened inside my mouth, and how my leg was involved in making a re-constructed mouth.

And how that is something I need to share now…and accept it was very hard to have this happen to me.

In May 2017 the “big mystery” of my mouth being so sore, and having swollen gums which was, as it turned out, a slow growing cancer in the ‘tooth sockets and under the top lip. This was diagnosed after over a YEAR of worrying, wondering and an enormous amount of anxiety often culminating in Irritable Bowel Syndrome…keeping me house-based. My recent post about that here.

Once the dentist had done his work removing teeth & bridge that were ‘hiding’ my cancer(see post below) this is what my mouth looked like

I was referred to the top person I had the good fortune to see at Sydney’s Chris O’Brien Lifehouse on May 18th 2017 just one day after diagnosis.

He and his colleague examined me, and asked lots of questions and with a thorough look with the ‘scope’ down my throat, into my ears and my mouth they said this cancer could be removed by surgery. B was with me, supporting me all the way, and I was quite shaky for the next part of news….

At the time of surgery, there would be tissue sent to the labs for testing, and that would determine if the cancer had spread more widely. (It had not). They outlined they could reconstruct my upper mouth (because all of the jaw and the palate would be removed and then reconstruct it using the fibula and flesh and skin from my leg.

“OK”…yes, I was shocked by the news.

And I had to sign all the permissions…and we drove two hours home with some relief but no idea really of how things would be.

But I felt these people knew what they were doing, and over the next 7 weeks of waiting for a surgery date I did have some awful thoughts and reactions from time to time.

These points are what I do not believe I have grieved until now and why I am sharing them.

1. My mouth. Very special place for me. Eating, Talking, Drinking, Kissing, Smiling, Singing.

2. As a chatty person, a teacher by career, and someone who communicated well I had quite some qualms about what would happen

3. As for using my mouth for …comfort eating (yes I admit it) and more, I wondered what would I do…..

4. My leg. The right leg as it was determined to have good blood supply was to have its fibula removed (apparently “we” can live without it!) and the skin and flesh with a good blood supply removed to be placed in my mouth.

5. My MOUTH! With parts of my LEG in it.

6. The ‘good news’ was that I did well, post-surgery…11 hours and so much more to but that is in the post linked below…

7. The ‘bad news’ is that I had NOT really processed the grief I feel now around my body. The losses of cancer. YES!

8. Not the losses of other parts of me.

My Prosthodontist, part of my team prepared a model to make for my upper jaw (made from my fibula). X rays show my mouth now. "Smile" is on counter at a check up. 2nd photo of me with 'teeth' last one before surgery. Other one of me in ICU 2 days after surgery

Now I am sharing the words and some photos.

I am releasing those feelings and allowing them to be.

I am, and always will be, grateful for the wonderful work of my surgical teams and that my body did well in recovery…

In fact, it’s interesting that at my final visit to my surgeon in October 2022 (5 years & 5 months after the first visit) I felt a combination of sad and glad because of my strong relationship with my team.

But there was this feeling…what now?

My body has told me.

Top Image: grieving the life change from Sydney to the Central Coast..and me, back in Sydney last year remembering the tough times.

I now grieve and release that sadness by writing about it, and acknowledging that I KNOW I still have a great smile, I can eat some foods again, but nothing in quantity, I talk well enough to be understood, I cannot kiss, nor drink with a straw or blow out a birthday candle, nor eat or drink with some spillage because my mouth does not seal, and I can walk and am doing well, and continue to drive.

But I have had a rare cancer (rare of rare my surgeon tells me)

And now I live with the ramifications in my body.

Recovery in hospital.

For those who also may not know, I took on a role, one year after my diagnosis and 4 surgeries as an Ambassador for Head and Neck Cancer Australia. My role was to raise awareness on line and in the community but even after 5 years I had not understood where my grief was from this diagnosis. I am glad I could help others.

My final day in the role. Speaking at my GP practice.

I am grateful to my head and neck cancer teams…

My “Prof” surgeon, his surgical assistant & me, & lovely office team at Chris O’Brien Lifehouse in Sydney.

and I still need to visit my prosthodontist for mouth and upper prosthesis checks…for the rest of my life. This is at Westmead, about 30 minutes from home.

Last year I wrote here that I did not realise at the time I had been through trauma.

Now, as I try to recover slowly with good self care and being aware of my capacity, I am acknowledging that the necessity of this time of rest, recovery and returning to what will be my retired life moving on.

I hope that my story is not too triggering for anyone.

These collages express my mix of grief and gratitude..for my body.

I know I needed to share it.

I am offering myself compassion as I process this stage from my life.

Thanks for being here.

Denyse.