Wednesday 10th August 2022

Archives for Thursday 14th July 2022

Head and Neck Cancer Recovery is SLOW. #WHNCD2022. 46/2022.

Head and Neck Cancer Recovery is SLOW. #WHNCD2022. 46/2022.

In the lead up to World Head and Neck Cancer Day 2022, 27 July 2022, I will continue to post about my head and neck cancer experience to continue to raise awareness:

I am also an Ambassador for Head and Neck Cancer Australia, sharing my experience and knowledge of my version of #HNC for others, via in person talks, on-line chats, zoom meetings and of course, blog posts…and good old social media: twitter, instagram and facebook.

Before the name change to Head and Neck Cancer Australia, the only charity in Australia to be supportive of those with head and neck cancer,  was called Beyond Five. Here I am doing my ‘thing’ at the last live event back in 2020 before Covid closed all such things down for the next two years.

Why is Recovery SLOW from head and neck cancer?

Treatments to removed a person’s cancer from an area of the head: inside the mouth, under the tongue, related organs that connect to the head area including cheeks, palate, jaw, and more can include:

  • chemotherapy
  • radiotherapy
  • surgery

Each person’s cancer may have a different level of seriousness (the grade) and the position of the tumour or area where cancer is detected.

Some people I know have had all three treatments, others the top two but not surgery.

From those I know who have had these, it does take many months to return to some semblance of regular life but life is always changed by head and neck cancer. Appearance is one but so is function and this may be no saliva in the mouth to aid speaking, eating, swallowing etc and changes in taste, hearing and so on as aftereffects of the brutal treatments which are designed to kill the cancer cells. 

There is always some collateral damage.

Mine was all surgery.

The speed (funny word to use) of recovery from this cancer is determined by the person’s basic health, the time of treatment(s) being given, allowing for the body to do its healing and for, as in my case, to see if tissue and bone taken from another part of the body is accepted in a new place within the body.

My SLOW recovery.

I am not by nature a patient person. However, in all these days, weeks, months and what stretched out to be over a YEAR, it was something I had to learn to change. I couldn’t fast forward my recovery nor could I rant about how much longer (I did on occasion, as it was a long and sometimes frustrating time)

In hospital five years ago, I had 3 days in ICU, then 7 in a private room. I got excited about the progress I was making when all of the observations made were going well.  The big one, was a doppler recording the beats (live blood flow)  where part of my leg was forming my upper palate & it needed to be GOOD news!  Yet with so much interference to my body (for the right reasons) it would be a LONG time before anything related to independence of sorts and some eating with variety happened.

Of course, I was somewhat immobile as my fibula and parts of my leg were taken to graft into my body, so I had bandages, dressings, and an adjustable boot. The care of this part of my body continued at home for 11 weeks post surgery.

 

Over 3 months….yes it was.

And then I still faced what we thought would be two more surgeries in my mouth to get ready for the upper prosthesis but as my mouth is small, and the reconstructed skin was tricky, it would require a 4th surgery and MORE time to go through more trips to Westmead and it was, in fact:

14 months!

 

That was a LONG wait but I did it!

And for the next 3+ years, I had cancer checks with my head and neck cancer surgeon, and many visits to the prosthodontist whose skills made my ‘smile’ and upper prosthesis.

It’s only now, July 2022, as I write, that I can acknowledge I am cancer free with gratitude. Head and Neck Australia’s congratulatory post was much appreciated:

Yet my recovery continues. My mouth will need regular monitoring as I have bone from my fibula which created a jaw, and flesh and skin from the right leg which helped me get a mouth which could function again. But it is not a natural mouth and it behaves differently.

I will cease my cancer checks in October 2022 but my prosthodontist will see me at least twice a year.

In fact, I had a call back recently because he noted some bone loss near one of the implants (the space where part of the upper prosthesis is screwed into the jaw) and he needed to removed the prosthesis to ascertain more closely how good the health was of my ‘gums’ and more. This involved a very long time in the chair, as he (and his wonderful nurse) unscrewed the upper prosthesis, removed it, did the inspection (deemed to be OK for now) and then replace the upper prosthesis.

I wanted photos to both educate me and those who read this because my mouth is not ‘so good’ to look at, and certainly not to talk with or manage any eating, without that special piece of detailed equipment…so here I am, with my ‘smile’ outside my mouth…

And to those who read this and may be concerned about some changing aspects to the head and neck areas, including a sore which does not heal, a lump that remains and might be sore or growing, or unexplained pain, check it out with your G.P. and or dentist.

And insist on further referrals if told ‘no that seems normal/OK’ because not ONE person who I know with a diagnosis of a head and neck cancer found this part simple or easy. Check out here too.

Persistence and insistence is key. Read what I did here. And that still took a year!

My Prosthodontist who has been at every one of my surgeries and his nurse. After 5 years we know each other well and for that I am grateful.

I am linking this post for Weekend Coffee Share and whilst this may not be standard weekend relaxation fare, it’s s story worth sharing. Thank you all.

Denyse.

Joining in with Natalie for Weekend Coffee Share over the weekend. (Publishing before then, on Thursday 14 July 2022.)

Thank you Natalie.

https://natalietheexplorer.home.blog/

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