Saturday 18th September 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

My Go-To Easy Meal. 38/51#LifeThisWeek. 97/2019.

Celebration time…and I forgot!

Last week marked 3 years of this link up. Three years, on Mondays, for over 150 of them, you and I have connected and communicated here. Thank you all so very much! Onward into 2020 for sure. I “do” have some thinking to do to find the optional prompts but it’s part of what I love about our community sharing our posts, on or off prompts on Mondays! Denyse xx

 

My Go-To Easy Meal. 38/51#LifeThisWeek. 97/2019.

My go-to easy meal is: Toast.

OK, it’s cereal. Alright.

It’s neither for a ‘main meal’ which we have in the evening but there is still a bit of a chore even to decide on a meal isn’t there?

But first: we both eat well at Breakfast time:

His always includes my non-fave fruit. Mine often includes yoghurt, fruit and more.

Eating after mouth cancer and surgeries.

It is HARD even now, some 12+ months to eat anything like a real meal. Why? It’s about chewing ability (my mouth tires) and having the capacity to chew it well enough to swallow. I admit, I do love the look of some meals I see on others’ blogs and on-line but the truth is none of them are ones I can even countenance eating. In taking the time it does to eat even a small bowl of food, it often goes cold as I try to finish and that make it unappealing. But I am doing this eating thing MUCH better than before the upper prosthesis of teeth went in.

Meals made to go along with my husband’s limited capacity to eat.

His is based on stomach surgeries quite some time back and he has, at times, some swallowing troubles.

BUT…this is not a post about “How Old People Eat” per se but it may give insight into both our changing appetites and capacity to eat as we did back in our 20s to say 50s. And my Dad in his 90s, who as my Mum used to say “lived to eat, not eat to live” finds smaller meals the only ones he can manage.

Not actually go-to meals but actually go-to the freezer and take out a meal. Some of these meals USED to include rice bases and spaghetti too but for me, 14 months of eating those has required a re-think and I have done it. I will come back to some of those meals again, but not for a while.

I do batch cooking. That means less fuss everything and not having to think ‘what’s for dinner?’ It also means that each of us two has a choice of a meal that we feel like that night.

Mid-week we dine together on a freshly made meal and one that can be also eaten the next night.

What do our batch-cooked meals comprise?

At the moment:

  • Beef Casserole
  • Savoury Mince
  • Sausage and Veg Dish
  • Sweet & Sour Chicken
  • Vegetable Soup with Ham
  • Pumpkin and Carrot Soup.
  • Meat Pies: my savoury mince inside. KMart Piemaker is a good size. Not as big as Sunbeam.

Both of us need ‘easy to swallow meals’ hence all above have some kind of sauce or fluid.

Eggs.

Such a standby for many I know.

However, I can barely look at an egg that’s been poached (I scroll by everyone’s brunch/breakkie pics on IG) but I can, at times eat scrambled egg and a family heirloom dish called Egg and Cheese.

My Dad’s mum made this in 1930s and he passed it on. My daughter likes it too. In a pan, quickly add an egg and also some grated tasty cheese, with a fork keep the ingredients together (no egg white to be seen for me) and as it comes together in the pan, it will brown on the bottom making it very tasty. I can eat this on small pieces of buttered toast.

That’s the go-to-meals for me.

However, somewhere along the line “I” have to go-to the shops and buy the ingredients and bring them home. Neither of us can handle take-away foods anymore: portions and high fat. So what we eat, is in most cases, what I cook!

What’s your go-to meal(s) story?

Denyse.

You can link up something old or new, just come on in. * Please add just ONE post each week! * Feel free to go with the prompt for the week to add your ‘take’ on the prompt. Or not. * Please do stay to comment on my post as I always reply and it’s a bloggy thing to do! * Check out what others are up to by leaving a comment because we all love our comments, right! * Add a link back to this blog in your post somewhere. I don’t have a ‘button’ so a link in text is fine! *Posts deemed by me, the owner of the blog and the link-up, to be unsuitable for my audience will be deleted without notice. * THANK you for linking up today!

Next Week’s optional prompt is: 39/51 Spring Stories. 30/9/19

You are invited to the Inlinkz link party!

Click here to enter


FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest