Friday 22nd November 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.

 

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest

Comments

  1. All the best for your appointments Denyse – you’ve come so far! Thanks for sharing the support agencies too, it’s all good information to have. #lifethisweek

    • Thanks Debbie. It all went well but finding a park in a very busy health precinct today was a lottery! Whilst I did not get to personally donate my art/craft goodies, the lady who runs the program knows where I left them.

      My meeting with Beyond Five went well and now I need to think about what’s next for me and that is OK too.

      The ‘best’ news is there is no further surgery for me on the horizon. My mouth is looking better inside that it did last time. Phew.

      Denyse x

  2. We take so much for granted don’t we Denyse? I’m watching my mother-in-law struggle to drink a cup of tea these days because she has a “quivering” jaw. She now uses a straw for all her drinks or sips very carefully. It’s been interesting following your eating journey and I’m so glad you have teeth again and can eat more normally x
    Thanks for linking up with us at MLSTL and I’ve shared on my SM 🙂

    • Thank you Leanne, I usually write these kinds of posts to help educate others and for greater awareness.

      I am sorry for your mother-in-law. Sometimes we take for granted what we have always done and then things change. My husband has an essential tremor (no cause) in his right hand so he uses his left now to drink a cuppa.

      One thing I have learned via my cancer experience is the brain’s way of adapting. It has helped me understand how I can now guide food better into my mouth even though my top jaw and lip have no feeling.

      Denyse x

  3. Hi Denyse,
    I found this post very timely as my dear brother unwent surgery this week (2 surgeries) for throat cancer. I lost a good piece of his tongue, has a feeding tube, and cannot yet talk or swallow.
    I will be his primary caregiver for a few weeks in his recovery.
    Thank you for posting this…that there is light at the end of this tunnel.
    Visiting from #MLSTL
    Saved to SM.

    • Oh Nancy, I am sorry to read this but glad he has you as his carer. There are many helpful sites on line for helping with nutrition but I am sure your brother’s caregivers in hospital will fill you in. In some ways I was fortunate that my future eating was not too restricted unlike what may be ahead for your brother for a while. There are facebook groups supporting patients and families. Email me if you want to know more. And, at the top of my blog on right is a page : Denyse: Head & Neck Cancer & all my posts are there. Warm regards, Denyse x

  4. You’ve come so far, Denyse! Well done! Looking forward to seeing your work for Arterie at work too. It’s an amazing project for the hospital.

    SSG xxx

    • Thanks so much SSG.

      I admit Arterie’s Deb and I never seem to catch up because of time constraints and meetings and appointments.. I have donated a few goodie bags of my art and craft that I think can be put to greater use at Lifehouse. If I lived in Sydney I could probably be more active but the two hour drive each way is not worth it for my health’s sake.

      The projects around art, craft, music and more at Lifehouse add to its ‘whole-person centredness’.

      Denyse x

  5. You have certainly provided some great information throughout your journey, Denyse, not just for patients but also for those of us who didn’t even know about Head and Neck Cancer. You are a great Beyond Five ambassador. Keep healthy and thanks for sharing your story with us at #MLSTL. Have a beautiful day. xx

    • Thanks Sue. Being both a blogger and an educator before my cancer diagnosis gave me a ready-made way to chart my progress, and then over time, realise it could help others.

      It also helps me greatly to “see” how far I have come too.

      Some days in recovery drag but it only takes a retrospective for that to disappear.

      I will continue to learn more about how to share the message about Head and Neck cancers. Even though they are ‘rare’ their symptoms can often be mistaken for something else and then diagnosis is delayed.

      Your kind words always buoy me.

      Thank you.
      Denyse x

  6. This is a fabulous insight into how you managed food and eating in those early days post surgery Denyse. It’ll be a fabulous resource for current and future patients with head/neck cancer. Great thinking to take all those photos of your food back then when I’m sure you weren’t feeling the best! #TeamLovinLife

    • Thanks is much Min. Yes, being a blogger, instagrammer and an educator before cancer meant that I already had the ability to share the resources. In fact the Chris O’Brien Lifehouse, CancerAidApp, Beyond Five and World Cancer Day have all shared my story.

      It is a rare cancer I have but it is on the increase due to HPV which is why Australia now has the vaccine for men/boys as well as girls/women.

      Denyse x

  7. There’s so much of “normal” life that we take for granted – until they’re no longer there. Each time I read your story I’m amazed again at how far you’ve come. #teamlovinlife

    • Oh there sure is.

      Not being able to bite or crunch or properly chew for over 14 months meant a ‘cranky me’ at times because “we” humans crave using the senses as we eat.

      As I said to my Prof on Tuesday that I had put on 5 kg in 6 months because I MISSED crunching..and he wasn’t too perturbed about the weight gain as he saw it as a sign of wellness.

      I will admit, I am reducing some of those foods that I mindlessly eat…and adding a walk in each day, because I LOVE my ‘newish” clothes a LOT!

      Denyse x

  8. I love that you are an Ambassador Denyse. A positive thing out of such a challenging journey. You’re going to be amazing.

Leave a Reply to Leanne | www.crestingthehill.com.au Cancel reply

*