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
annoyeddisappointed, 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!
- My Husband
- My HNC Surgeon
- My Prosthodontist
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.
Taking Stock.#5. 48/51. #LifeThisWeek. 128/2021.
Taking Stock.#5. 48/51. #LifeThisWeek. 128/2021.
This is the last taking stock in 2021 and may not be another when in 2022.
So, as this could be the “last one” I am going to share here about my life as it is on the eve of my 72nd birthday.
And as Pema Chodron says here…..
I am grateful for all who have made a difference in my life. Not all people are represented here because I may not have had an image. So, here goes, using images to ‘match’ a word. And using my alphabetical list.
Admiring: those people who are the trained professionals in all allied health, surgery and more, and have cared for my health.
Becoming: a part of a family, grateful for the love, care and kindness of parents and grandparents since 1949!
Curious: about life and learning….always!
Delighted: to meet up with on-line friends when I can.
Excited: that we will get to celebrate my birthday…..out for morning tea! It suits us both to do this…here’s a memory from 2018. If the rain stays away we will be going here again: a local nursery.
Feeling: that time is moving way too fast….that seems to happen after 70!
Going: to my Dad’s sometime in December to share some meals and treats. He’s certainly been the constant in my life…known me for more than 72 years!! This from my 71st birthday when I am not sure who was helping who stay on their feet.
Helping: Head and Neck Cancer Australia as an Ambassador. I have held this volunteer role for 3 years and as I said to the CEO recently, “you got me for life“.
Imploring: people to keep an eye on anything (related to Head and Neck cancer* symptoms) that might be not healing or increasing in pain. size and so on…and ensuring if a GP or dentist, doesn’t take it seriously, to seek out another option. *all cancers of course, but these ones have no diagnostic tools.
Joking: No idea what was funny at Oxley lookout last year but this bloke is quite the joker….and this wife, is not always ready for his sense of humour!
Keeping: this blog going into its 12th year is testament to my commitment but to the engagement of this blogging community even more!
Loving: the freedom of days’ activities choice when retired. Sure, there is a routine of sorts, and yes, we get up by a certain time (not tellin’) …but no bosses!
Making: memories for me and others! By cards, photos and little albums. I love doing it too.
Next: I am too easily wanting to plan what is next yet, at the same time trying to stay in the present. The one thing for me is knowing where we will be living next year, and so far, the owners have agreed to us staying on. HOWEVER, the way real estate prices have risen here, houses in our street up by $200-300K in less than 4 years, we suspect we will get a rent rise. Sigh.
Observing: the places where I lived as a teen and older and having a deep appreciation for that time.
Pleasing: to notice that I can continue to change some health habits slightly to be more health-aware in my ageing years.
Reading: the many and varied posts that YOU, my blogging friends, share here for Life This Week. We are, today, at #268 of the link up. And how I met some of my blogging friends two years ago.
Staying: on track with meditation. It will be 2 years without missing a session by end of 2021. I now do Daily Calm in the morning and another track in the evening. It still counts as one day!
Trying: to remember all I am grateful for more than ever…not everyone gets the chance to continue living as I have post-cancer.
Understanding: that life is not static. Der. But sometimes when I don’t want things to change, I then remember that they change anyway so grasping to keep things are they are is not on. I have learned much about this thanks to meditation, and listening to a range of CDs from teachers of Buddhism and more. Very wise people..and we are all human.
Viewing: old photos for this post and feeling the warmth of nostalgia but also heeding the point above!
Welcoming: changes to Covid restrictions here in N.S.W. soon, with reduction of places where you need to sign in with QR code, and having the choice to wear a mask. We think, for now, we will continue to mask up if in a crowded shop or doctors’ surgery. Definitely needed recently at a Big Hug Box packing day. NB: hope with new strain variant, we will remain vigilent.
X- “X-tra grateful” to all of the women who shared their stories of courage. In the 3 years, more than 72 women shared their stories. Wow. I have included images of all who continue to blog and link up here fairly regularly. I “hope” I have you all in this group. Let me know, if I have missed you.
Yes: to more plans to do ‘less’….and that sounds like a contradiction. In the meantime, here I am over decades of my life ‘doing’ what I most enjoy: connecting with those I care for and who love me. Perhaps a bit of a stretch re Former PM Julia Gillard, but she did thank me for my education roles.
Z – Is there anyone else I need to show my gratitude and admiration for their part of my life? Yes, it’s an old image but the LOVE from this Papa to his only grandchildren cannot be surpassed. And the love we had for him is exemplified in my brother now being Papa to his 2 grandkids and that B became Papa when his eldest granddaughter couldn’t get her mouth around Grandpa, and out came “Pa-Pa” and it sure stuck.
Thank you all for reading, commenting and sharing your blog post today.
Take care,
Denyse.
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Life This Week. #268
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