Monday 8th August 2022

Head & Neck Cancer: My BIG Day: 6 July 2017. Post Surgery: Denyse Speaks. 44/2022.

Head & Neck Cancer: My BIG Day: 6 July 2017. Post Surgery: Denyse Speaks. 44/2022.

It’s timely that the month of July holds big significance to me, and anyone else affected by having a head and neck cancer diagnosis.

27 July is World Head and Neck Cancer Day.

As someone who was completely ignorant of  “this cancer” until 17 May 2017 (story is here) I have used my experience as a patient, and an educator to help spread the words and images about this cancer, and being AWARE of what is it. So many health professionals also are not always aware as we would hope. Education & training is key!

However, this post is to:

  • commemorate (my diagnosis and first surgery 5 year anniversary)
  • share (my experience)
  • congratulate (my team of many professionals)
  • and be grateful that …in my case, this cancer has not returned.

My biggest fear, I guess, post this big surgery, was that I would have a tracheotomy (I was warned this could be the case) if the airways were swollen as a result of the reconstruction…because “I like to talk” as those who know me would agree.

And when I WAS able to speak, even in a limited way, when I woke during the post op ICU period: late evening 6.7.2017, I was so relieved.

My use of my phone camera was for two reasons: distraction from the boredom and tedium in hospital. and to form a record for myself, which I am now sharing for World Head and Neck Cancer Day 27 July as well as here.

The videos are in chronological order: 4 from recovery at Chris O’Brien Lifehouse: 10-15 July 2017 (I was in ICU from late 6 July until 9 July when I moved to my private room)….

and one just before I was able to get my upper prosthesis fitted in August 2018….

and one from now, some 4 years on, after my 5 years since diagnosis. Each one is very short.

Thanks for viewing…as I hope you have.

I keep these as a reminder of how far I have come thanks to:

  • great experienced and skilled head and neck cancer surgeon and team… four surgeries in total = four recovery times = 14 months before teeth!
  • in-hospital speech and language therapist, who on meeting me (see video one) could ascertain I had no issues with swallowing water, and could talk..and issue instructions as I heard myself do. Oops. And the dietitian who guided my eating (nutrition) once I was off the gastric feeding. The physiotherapist who encouraged me to MOVE after my leg, which had ‘sacrificed’ its fibula and some flesh for my mouth. And yes I did. Then there were the community health nurses, many, and my own HNC specialist nurses I could chat with.
  • people who never let me think I couldn’t make progress (its easy to become worn down) and they include the nurses at the hospital who I talked with every day…and of course my husband and as I recovered and went home, friends and those who helped me (GP, dentist, and more)  and family.
  • prosthodontist and his nurses and makers of prosthesis who got me back “my voice” with just a wee lisp…took longer than we all thought because the skin in my mouth wouldn’t behave as it was supposed to. It was meant to create a space for the upper prosthesis but it didn’t till a 4th surgery and 3 months in yet another stent.
  • my determination to communicate and connect. Becoming an Ambassador for then Beyond Five (now Head and Neck Cancer Australia) in late 2018 helped me with this! I met with head and neck cancer groups locally and further afield, and politicians too, keeping the information about Head and Neck cancer at the forefront for others.  This is my life force!!
  • blogging where I get to share.

A collage of July Selfies: 2017-2020.

 

Warmest of wishes to you wherever you are viewing this post,

Denyse.

Ambassador for Head and Neck Cancer Australia.

My story can be found here on H.A.N.C.A. site.

The series of videos made by Head and Neck Cancer Australia where I was one of the two patients to share our stories of eating to be well after head and neck cancer.

Resources for Head and Neck Cancer Patients, Families and Professionals can be found here.

 

 

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ONE Day…Before Half My (Cancerous) Mouth Was Removed. 5 July 2017. 43/2022.

ONE Day…Before Half My (Cancerous) Mouth Was Removed. 5 July 2017. 43/2022.

On the morning of Wednesday 5 July 2017 I was actually eager to get going….

On the long (2 hour) drive from our place in Gorokan, on NSW Central Coast, to Chris O’Brien Lifehouse in Camperdown, Sydney.

It Helped Distract Me to Share on Social Media

Why??

I had waited for 7 weeks for this day to arrive.

Mind you, there were many emotions expressed by me before this day:

  • fear
  • worry
  • life changing in many ways
  • sad
  • frightened
  • confident
  • determined

and they’re the ones I remember.

I knew I had to have this cancer removal surgery.

I knew it was the only way forward. I knew lots  but I felt lots too….

How might I ever eat again?

Would I be able to talk?

How might I look?

And more….

So, to commemorate that day (and the night) I am doing this post for ME!

COURAGEOUS

ME

“what is that about doing what you are scared of because there is no going backwards, only forwards…”

Before the 5th July, when I would be having my pre-op tests and more at Chris O’Brien Lifehouse:

  • I had already met with my two head and neck cancer surgeons,
  • had two planning appointments with my prosthodontist,
  • a big appointment with my psychologist,
  • lots of chats with my husband,
  • and a few extra confidence building GP visits…
  • then at COBLH they would be doing more tests on that day including blood tests, Xrays, ECG, chat with anaesthetist, booking into the hospital, and walking around for me to get  semblance of where I was and what the place where I would spend at least 10 days be like.

I was treated with kindness and care all the way, with my surgeon’s practice manager popping down to ensure all was OK.

From Area In COBLH Where I Had My Pre-Admission Tests. I was not to know, that my view of Sydney would be similar when I was in my room on Level 9 later that week.

We had planned to stay in cheap residential accommodation 5 minutes from the hospital the night before, and my husband would stay there while I was in intensive care.

I admit when we arrived, and some readers may know of this place as its in Inner Sydney, it felt not like ‘us’ but we persevered until…I had a breakdown in tears and it was all of the emotions coming together and there was NO way I could see B being comfy here, facing a long and winding set of stairs to the relatively small room….so, here he is doing something that eased the feelings:

B speaking with our daughter, who lives in north western Sydney, an hour from the hospital and making plans to stay with her. Me, trying to calm myself!

And after the place’s caretaker was prepared to give us a refund, we settled, not really….but before dark, I went for a walk through Newtown, down towards Carillion Avenue and Sydney University, close to Missenden Road, Camperdown where Chris O’Brien Lifehouse is located.

It is quite close to Royal Prince Alfred Hospital, (R.P.A.) and it is also a teaching hospital. My mind went back to the late 1960s when my then boyfriend (not B) was at Sydney Uni and we went to various balls and functions there, and I even played netball in the Uni grounds back in teachers’ college days. I guess I told myself, I could never have imagined being here, some 50 years later, and now living far away from my life back then, to be operated on, the very next day by a specialist head and neck cancer team….

I slowly walked back and noticed this lovely flower as I came back to the place where I would sleep (!) and get ready for the 6.a.m. arrival time on Thursday 6th July 2017.

 

I looked in the mirror that night as I got ready for sleep….and said “good bye” to this upper jaw that had cancer through it.

At 5.50 a.m. we walked down the many stairs, in the dark of a Sydney July Winter morning, to the car, where we had safely left my hospital bag, and got in to make the 5 minute drive to COBLH. We had a laugh (thankfully) though when instead of going on the dimly lit path to the exit, B managed to drive over the lawn..Ooops.

After parking the car outside Chris O’Brien Lifehouse before the carpark opened, B took me through the doors at the entrance (on the side of COBLH a design decision by the late Prof Chris O’Brien ) and we walked to the almost now familiar lift bank…after I went to the very familiar ladies loo first!

Then….there is no more to this story, except that tomorrow, on 6 July 2022, I have a second post coming about “getting back my voice and more”.

Thank you to any readers and I would be delighted if you made a comment!

Denyse.

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