Tuesday 11th May 2021

My Head & Neck Cancer Patient Update. Been A While! 51.1/2021.

My Head & Neck Cancer Patient Update. Been A While! 51.1/2021.

I am coming up to four years since my head and neck cancer diagnosis on 17.5.2017.

I wrote a great deal over the years about my head and neck cancer to both help myself process it all, over the many times I faced challenges including surgeries and long recovery times and I wrote for others. This is why my blog has a head and neck page to be found here.

Then in late November I wrote this.…and was very pleased to put my head and neck cancer posts away. Even though, I have included parts of this in various posts such as Life This Week and Telling My Story since, today is the first time I am writing an update.

What Happened When I Was Issued With My Upper Prosthesis.

  • I smiled A LOT.
  • I had an expectation to be able to eat foods I had missed.
  • I was told, I now know was a feeble attempt at a joke, by one of the prosthodontists, that I had to bite into an apple before I could leave the day I got those teeth.
  • I am so annoyed  disappointed, even over two years later, that I was misled with some kind of joke because life WITH an upper prosthesis is nothing like having my own teeth or even an upper denture.
  • I have no feeling in my upper lip as it too had cancer and was partially reconstructed.
  • I could eat some foods I had missed initially: missing crunchy foods….but I have to guide whatever I am eating towards my mouth and use my tongue to sense what is coming, and then the food is put in my mouth by me
  • I still have challenges.
  • I still, after all this time, cannot always guess the right amounts of a food and suffer with mouth spillage at the sides.
  • I often put too much on a fork or spoon…because I am hungry…because the food is warm…because that is life time habit

These are lessons I am continuing to learn each day…and it’s my third year of living with the reconstruction in my mouth.

My inner mouth – gums at the front and behind the upper prosthesis are skin that was harvested from my thigh. My palate is the same. My wonderfully kind and knowledgable prosthodontist (not the ‘joker’) tells me skin from the leg was never meant to be in our mouths so it will always be a challenge in terms of my management to keep it healthy as I can and for me to put up with the level of daily discomfort.

What Life Is Like For Me Now As a Recovered and Well Head & Neck Cancer Patient.

  • There is no sign of cancer within me. My head and neck surgeon does not need to see me until September 2021 – a full year since last visit
  • I am seeing my prosthodontist in mid May to have a 6 month check and CT scan for bone changes.
  • I am self-caring well for the upkeep of cleanliness inside my mouth using a water pik daily, a micro brush around the abutments I can reach and cleaning my upper prosthesis, partial denture and remaining 8 teeth with care.
  • There has been no addition gum overgrowth and for that I am incredibly grateful.
  • I keep smiling.
  • I love to share my story.
  • I continue to be an Ambassador for Head and Neck Cancer Australia
  • I will reduce my local head and neck cancer group attendance
  • I will help raise funds in the Soup for the Soul event locally where I have sourced some great help from a cafe.
  • I will share the stories of others along with my updates on social media.

BUT…here is some more:

  • I continue to learn that I have to live with restrictions.
  • I can no longer eat anywhere other than home unless it’s a manageable ‘cake’ and ‘coffee’ somewhere.
  • It makes travelling overnight anywhere a bit challenging. Mostly I can take my own foods and utensils.
  • I cannot go to someone’s place for a meal and I think…even though I do not make any fuss of it…most people really do not even think to perhaps ask what may be suitable. To offend no-one, I have to say, it’s a morning tea or afternoon tea or very light lunch that I can probably eat.
  • I feel, even though I look normal, that to understand what is happening for me inside my mouth it is better that I admit to what are my limits and stick to them as I do not want to offend….
  • It is messy when I eat.
  • I often have food spill from the sides of my mouth (particularly if I have put a bit much in) and I constantly wipe the sides of my mouth needing paper towels and tissues nearby.
  • I always have water close to me.
  • I often eat alone…not because I want to but because I take so long and I can no longer really eat and talk…my husband has kindly told me, of the ‘look’ of food at the front of my mouth.

Why Update Now?

  • I was sore eating yesterday. Stinging sore inside my mouth.
  • I know I have to expect a certain level of this.
  • My mouth is much smaller inside than I remember …because of the hardware that’s been placed inside.
  • I knew I had to change somethings about my eating habits to help.
  • I did this initially by using a large teaspoon for cereal instead of a dessert spoon. It was better.
  • I have now cut up foods into small pieces and resist putting larger (as I was) amounts inside.

I am admitting my self-care and knowledge of how to help myself needed to be written and spoken about. For too long, I have looked and sounded right…and that is good…but for many of us (and now I include me) we are never the same post- head and neck cancer.

I am forever grateful for my professional team who have ensured my wellness to this day!

I used to think I couldn’t admit to having some issues because I have had such an awesome and great recovery. I now know that in being human…and a vulnerable one at that, I had to ‘out myself’.

This is why I posted today.

Update: got some largeish teaspoons. And, have cut up food into smaller pieces. Winning at changing habits!

Take care everyone,

Denyse.

 

 

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest