Sunday 24th March 2019

Eating With No Teeth*- Head & Neck Cancer. 17/2019.

Eating With No Teeth* – Head & Neck Cancer. 17/2019.

Update on Being a Head & Neck Cancer Patient. 

Oh I “did” have 8 teeth*…in my lower jaw and they remain. Yay for “some” teeth.

In the past year I know how far I have come as far as eating is concerned since my Head and Neck Cancer diagnosis in May 2017. I have been delighted to have an upper prosthesis of teeth now screwed into my abutments in my jaw. They were attached on 21 August 2018.

The Before and After of “Teeth Day” 21 Aug

OH HAPPY day….it really was but I had many eating lessons to come and I still do. More on that in a future post.

Day 1 post surgery to around Day 8.

Back to those months when I was post-first surgery. I recall being fearful of what it would be like not to eat but with a fluid drip and then a gradually introduced naso-gastric feeding tube my body was cared for. My mind did accept what it was until around Day 7 post-surgery when I recall feeling hangry. You know: angry because of hunger. So, when I was given the chance to see if my mouth (and brain!) remembered how to sip water and my throat allowed it to swallow…remember all of the inside of my mouth had been affected in some or many ways but my reconstructive surgery…it was heaven!

This:

Day 9 and Day 10. Discharge on Day 10.

This:

First meal in hospital. Then next 3 times I did not enjoy it much.

Early days at home. First Weeks.

I have IBS and with an empty gut receiving food for the first time in a long time, as well as the prescription of a far too strong for me anti-biotic on the morning I left hospital as a “your drain in your leg looks infected” ….my gut (and I) were just not happy in that first 10 days home even though I was starving. Poor husband did his best to please, and I also tried to be helpful but it really was a challenging time.

When my GP unravelled the cause of the massive diarrhoea episodes I had, he told me to forget any (hospital dietitian suggestions of ) liquid meal replacements, protein additives and eat what I could and felt like. The relief was amazing and coming off the giant dose of anti-biotics helped as the leg looked fine. The toast in these pics really wasn’t consumed but I liked ‘tasting what was on it. Avocado and soup were good friends, and also peanut butter eaten off the spoon. Jelly and icecream have never been a favourite but they provided so much mouth comfort with their smooth coolness.

The next weeks turned into months.

By the time the second week at home was over, despite my sore leg, I was able to do some meal prep. It frustrated me that I depended on my husband’s kindness and labour as I wanted to contribute. Eventually I worked out how I could have some say and also make some meals that would work for me. We mostly ate separate meals anyway because of his health. I also had many types of soup: homemade vegetable soup, pumpkin soup & tomato soup. For someone who was never a cereal girl at breakfast, weetbix and milk were/are my go-to foods!

Why this post about eating as a Head and Neck cancer patient?

I have written about my management of eating in two posts.

Part one is here, part two here.

Why I decided to do this more detailed one is for any  newly-diagnosed head and neck cancer patients who come here to read and view. Sometimes it is the head and neck cancer patient’s carer who needs some ideas. It can be very overwhelming and confronting when something as normal as eating & drinking (let alone speaking and swallowing) is changed dramatically via a cancer diagnosis.

I was fortunate in many ways. I had a limited time with only a naso-gastric tube before returning to eating and drinking as well as I could.

I know some people have long-term eating and drinking challenges following different Head and Neck cancers and procedures.

My health is good. I am looking to the 2 years marking the first cancer surgery in July 2017. What I know is that I may have to modify my eating again over time if more surgery is prescribed inside my mouth to enlarge the space between the lip and ‘teeth’ on upper prosthesis.

How To Seek More Information On-Line.

In my case, the words and written information from my Chris O’Brien Lifehouse dietitian helped me. I learned about the important of protein and fat in a post surgery diet. I also learned to value-add and I am grateful for that. For information on Chris O’Brien Lifehouse, go here.

Each head and neck cancer patient needs to be guided by their professional team.

The site and organisation called Beyond Five has a comprehensive page of information and this takes you to pages on nutrition with links here.

Beyond Five is the organisation I am working for as an Ambassador in 2019 to raise awareness of Head & Neck Cancer.

The stories of others with Head & Neck cancers are shared for here all to read:

 

This is a link to finding avenues of supportive care on the Beyond Five website.

There are support groups to help you as well. Here is the link, again from Beyond Five, to those in Australia and New Zealand. Correct at the time of posting.

Recently it was World Cancer Day and I submitted my story which was published here.

I AM a head & neck cancer patient

I WILL share for others to be aware

 

This post is going live on the morning I will be driving 2 hours to Chris O’Brien Lifehouse, donating some craft supplies to their Arterie program, having the first meeting with Beyond Five for 2019 and then visiting my Head & Neck surgeon, Professor Jonathan Clark and Clinical Nurse Consultant & Surgical Assistant Sr Cate Froggatt. After my cancer check, I will be better informed about ‘what’s next’ and then drive myself back home!

  • UPDATE: the meeting went well and provided much for me to discover as I move into my role as Ambassador to Beyond Five, and then my cancer check went well too. My professional team told me the inside of my mouth looked better when they last saw me early January and no surgery is required (I always add, at this stage…as my journey has had some detours!) and I will be back for a 3 month cancer check in mid May. That will be 2 years since diagnosis!

Wishing you well, from me. a head and neck cancer patient, to patients, carers, family and friends.

Denyse.

Joining with Sue and Leanne here for Midlife Share the Love link up on Wednesday

On Thursday linking up with Leanne for Lovin’ Life here.

 

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Second Six Month Check-Up…With Myself! 3/2019.

Second Six Month Check-Up…With Myself! 3/2019.

What is this six month check-up about?

It is about my assessment of my physical and emotional health for the second 6 months of 2018.

Oops it is already 2019 I know but I have just scraped in I believe.

Here I go, following on from the first six month check-up with myself, here.

It’s no secret that when you have a cancer diagnosis that check-ups are both regular and scary. Regular ones are like this protocol for my head and neck cancer:

for the first 2 years: every 3 months. I have completed one year and really only had ONE formal check up because…I have been for surgery with my Professor 3 times post initial big surgery, and my prosthodontist is checking inside my mouth at all of my very regular visits. 

for the next 3 years: every six months. This assumes no symptoms in between checks. On Tuesday 8 January my mouth needed a check as skin was growing more than it should. I was relieved to know it is not a cancer recurrence but I did get news that more reconstructive surgery could be ahead. I am still absorbing this news. 

Let’s get started:

July –  December 2018.

My Contribution to Our “2 Person Retired” Household.

  • cooking my meals which can be eaten with little chewing, with good nutrition & taste until I could eat in a more normal way
  • cooking more meals that we can eat together as I got my upper teeth prosthesis we get to do this
  • making cakes & biscuits. As I can eat cake & now some biscuits, there is greater variety for us both. I still have a stash of small iced cakes for me and un-iced ones for my husband to which I now add (at his request) sultanas and walnuts
  • cleaning the floors that require vacuuming each fortnight – oh so necessary but thank goodness for the battery-charged stick Dyson
  • cleaning my en-suite bathroom and all surfaces of shelves, sets of drawers etc in the house
  • ensuring all plants outside are watered and cared for – watering, moving them around as need be and pruning
  • grocery shopping now my full responsibility as there is a very convenient local Woolies. My husband picks up some needs for himself at the local IGA.

My Self-Care Routine.

  • I would like to think I have this down pat. I do not. I sometimes do too much and wonder why I am tired or tetchy.
  • I kept the same first sentence as last time. I have made it a priority to recognise my fatigue before it really hits and I also want to be less focussed on social media for a time each day.
  • Even though I was someone who loved her busy-ness in work and then when caring for our grandkids and part-time teaching I now know I am better with stretches of time that are mine
  • I am getting better at my ‘going to sleep’ times and continue listening to some ‘sleep stories’ via my Calm meditation app
  • I know for sure I am not in a race for self-care or self-improvement and I do think marathon rather than sprint much more than I did 6 months ago.

Love sent to me by a friend. A beautiful mandala crocheted blanket: perfect in the cooler months.

My Care For Others.

  • I am getting better at this one!
  • When I was recovering from cancer surgery in those months from July to November 2017 my physical restrictions and mental tiredness meant I could not do much at all
  • I now know the value of caring for and about others does not mean I have to fix anything 
  • I have stepped much further away from my “must fix everything for everyone” self.
  • I need reminders from myself about this and usually I ask myself the question “who am I doing this for?” If the answer is to make me feel better I no longer do it.
  • It is essential though, to know each of us is connected to the rest of the humans in one way or another and to share what we can for the common good
  • I believe this means my people pleasing has diminished even more in the past 6 months by setting boundaries
  • I know the boundaries for me and that how others are behaving might relate to their boundaries. This is big learning life lesson for me.

With Naomi, our property manager, on the Tenants Awards’ night where we won Tenants of the Year “Gratitude”.

My Physical Appearance Each Day.

  • In  2018 over time my physical appearance has taken on a new dimension with new & colourful clothes which suit me and fit well as I continued to #dresswithpurpose each day
  • It is also something I look forward to as it is part of the way in which I self-care to take myself out for a coffee.
  • I continued having my photo taken and into 2019 it will continue
  • I am keeping myself honest about my appearance too as I know my weight has increased as I can eat not only more easily but from a greater range of foods
  • As someone who was very overweight for decades  – read about it here – I can still become a little concerned about the weight creeping on but am now seeing myself as being healthier as I do eat better than I ever did.
  • Instead, I took a challenge to dress well each day quite seriously. It was a self-created challenge. I am not going to stop it as I know it helps me each day.

With this man by my side “we” can do and be all we need. Love is our relationship that will celebrate 48 years of marriage in late January 2019.

Summary.

  • I am happy with many aspects of my six month review as I know I feel better emotionally and physically
  • I have taken on board some disappointments relating to my cancer surgery and the on-going work inside my mouth and I trust my professional team wholeheartedly
  • I am glad to have found a support group for Head and Neck Cancer patients on Facebook and it is making a difference to have a kind and safe place to share stories.
  • My confidence about myself and my ability to re-join the world more widely was proven many times as I drove myself to functions where I knew no-one and socialised, and met up with friends for coffee and cake
  • I also was finally recognised for my service to students of N.S.W. Public Schools in December and that closed a gap in the circle that had been messy in terms of my almost 40 year career.

Met fellow blogger and Central Coastie Sanch for morning tea.

 

I believe I have allowed myself, even writing this, to be vulnerable. I am taking braver steps each day as I not only recover from cancer but learn to live well as a woman who will be 70 this year!

 

Have you ever considered a ‘check-up’ with yourself?

It could be a good thing for you to ask yourself “how am I going?”

Thanks for reading.

Denyse.

Joining with Sue here & Leanne for MidLife Share The Love Linky on Wednesday – the first one for 2019.

Joining in with Leanne here  on Thursdays for Lovin Life linky.

Hello everyone!

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