Thursday 2nd December 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.

 

 

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Remember This. 3/51 #LifeThisWeek. 5/2020.

Remember This. 3/51 #LifeThisWeek. 5/2020.

My plan for today’s post went back to the drafts when what I am sharing came through my social media. I want to remember this….how I have watched (via the internet) a person I’ve known as a blogger…as a young mum and wife…wend her way through the challenges of life that might for some be too much.

We share a love of photography, the beach, nature, kids, art, journalling and blogging.

Becky from here (do read her blog even though she has not updated for a while)  and also here on Instagram wrote this and I “wowed” and “woahed” my way through.

You see, I have taken an interest (from a distance literally) in Becky and her husband’s and family’s welfare for a while but moreso in the recent bushfires which were coming VERY close..too close to where they live on the far south coast and they needed to retreat to family in Canberra. I know they are home now and thankful their place is intact. The memories of what remains must be awful.

Becky and I, along with a few others in instagram, share our love for #1secondaday which is an app recording the month/year one second at a time. Becky was sharing hers and I saw what she wrote.

Remember this! Gratitude. Find it. Feel it. Be it. It’s part of Becky’s took to keep on keeping on through her mental health days and nights.

Like I said to her, “I am so proud of you”. I hope you too can remember this: Becky Found Gratitude Every Day.

 

2019’s 1SE. I had planned to say a lot when I shared it. About the year, about mental illness, about me having dropped all the balls that were once in the air. About people who are really there for you even when you’re not actively able to reach out to them- and those who disappear. About being seen as a ‘poster girl’ for mental illness, approached for tips and ideas for helping someone who is struggling but rarely being on the receiving end of those actions. About disappointing myself, stigma and toxic positivity.

There was a lot. It probably would have ended up as a blog post, I guess.
It’s all still very relevant to my situation, but I don’t have the energy to put it all together.

What I DO want to say though, is this; if you’re practising gratitude, focusing on those beautiful moments, acknowledging that you are blessed and you’re STILL suffering through the darkness of depression you are not broken. This thing I do everyday is part of remembering the good things (memory like a sieve), being so very thankful for this life, being in awe of these little people. But, I’m still not ok.

Being depressed doesn’t make you an ungrateful pessimist anymore than having a broken leg does.

Thank you so much Becky for sharing.

I hope too, that when you are up for writing a blog post again, you pop in here. Or, as I often recommend, link up an old post on a Monday. All are welcome!

 

So, I ask the question….as above….

And take care everyone.

Denyse.

I was inspired by Becky’s story, but I am also aware that mental health does not always treat us well.

If you need to chat confidentially to someone do call Lifeline 13 11 14.

 

Link Up #172. Life This Week.

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