Thursday 1st October 2020

Head & Neck Cancer Challenges: FOOD! 31/51#LifeThisWeek. 62/2020.

Head & Neck Cancer Challenges: FOOD! 31/51#LifeThisWeek. 62/2020.

Filming with Beyond Five For Nutritional Videos. See Below.

In the past two weeks for my #LifeThisWeek posts, Head and Neck Cancer has been the focus.

Regular readers know I have had head and neck cancer, and now, cancer-free (fingers crossed) I like to share stories and help others. It was World Head and Neck Cancer Day 2020 last Monday and I wrote about this here. The Monday before, it was an update on head and neck cancer, here.

You know, I hope my readers are never tired/bored of this awful cancer being shared…because it is, sadly, a growing one here and around the world, and many of you have left me know, that if it wasn’t for my posts, you too would not have known.

FOOD!

Love it.

Right?

Of course.

Once I was diagnosed with head and neck cancer back in May 2017 and found out I was having radical and reconstructive surgery to remove HALF of my MOUTH…my inner thoughts were: “how can I eat?” Not well. Not right away and for me, in fact for the 14 months after July 2017 a very challenging way of keeping myself nourished…and perhaps even emotionally sustained by food followed.

Here are posts where I went into more detail…and some images I share. From then.

Eating After Gum Surgery Part One.

Eating After Gum Surgery Part Two.

 

Eating with No Teeth Head & Neck Cancer

 

My First Year With Teeth

 

FOOD as Nutrition. It Heals and Sustains Head and Neck Cancer Patients.

I have had an interesting relationship with food to be honest. However, I will just say, I did eat reasonably well, but I also used food to comfort and be ‘kind’ to myself. Ring any bells for you?

That aside, going into Chris O’Brien Lifehouse on 6th July 2017 to know my mouth and ability to eat/feed/nourish myself was changing forever. In the first couple of days post big surgery I was in ICU and I recall the person I now know as Jacqueline – Dietitian come by and then, once I was in my room, she spent some more time with me as I moved through more of the (dreaded, shudder, feed via the naso-gastric tube…to W A T E R…oh happy day with me and the Speech Pathologist Emma.

Here’s the thing: Head and Neck cancer patients MUST maintain their weight. Stay well. Eat as well as they can. This ‘diet’ from the past Denyse found that hard initially. However, when I told my head and neck surgeon I had put on 5kg since getting my upper prosthesis 7 months early he said “GOOD”

Jacqueline did her best to educate me about keeping up high quality protein, even if it was via a commercial mix once I was home. I spoke to her of my treats (lemon syrup cupcakes) I had made and froze before surgery and she told me the words I loved hearing:

VALUE Add to foods. So, have your little cupcake warmed through and add full fat dairy topping: icecream custard, yoghurt whatever is your preference.

I admit I ended up working on how to feed myself food I thought a mouth with much added skin, stitches on top and 8 teeth on the bottom could manage. I am creative. I did come up with some good tasty foods. By the end of 14 months of having those foods, until I had some teeth added as a prosthesis, I admit, I did not want to eat any more like them. That’s for another day.

In 3 weeks time it will be 2 years since I have had upper teeth in the form of a prosthesis and that is amazing. I am also a Community Ambassador for Beyond Five, and earlier in 2020 I was invited to be interviewed about my eating with a head and neck cancer diagnosis and what I have learned.

 

 

https://f.io/F1Z5QQpT

The remainder of the videos can be found here on Beyond Five.

https://www.beyondfive.org.au/life-after-cancer/diet-and-nutrition/nutrition-videos

 

Thank you to all at Beyond Five and the former patients and carers I met as well as the Allied Health Professionals. It was something I was initially reluctant to do, and in the end “did it in one take and a thumbs up”.

Have you ever been filmed for viewing on TV or on-line?

Denyse.

Link Up #200

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Comments

  1. Denyse, Be proud of yourself for overcoming this huge challenge of how to keep yourself nourished after HNC surgery. Your story and tips help other HNC patients and raise awareness in general. #lifethisweek

    • Thank you kindly Natalie.
      I continue to share what I did and learned for others.
      “Once a teacher, always a teacher!”

      Denyse.

      PS there is now the video of me in the post that did not load earlier.

  2. It must be so weird and frustrating working out how to eat again, and what you can eat. For the record, the best bit of the cinnamon donut is small bits from the edge…so good thinking on a starter food/treat…..

    • Yes it is. It still is. I can look at something and go, yes, love to try that. Nope, completely different to what I thought.

      My mouth is different inside. I cannot chew well but often need to use the front of my mouth (husband says don’t talk while doing that…food is everywhere).

      It’s been a bit of a weight stabiliser in its own way even though we are not expected to lose weight. I literally cannot eat anything like the meal sizes I used to. I eat a small side plate or bowl these days.

      Recent visit to hospital I stuck with weetbix, sandwiches, jelly and icecream and was well over that by time I came home.

      Here’s to donut edges.

      Denyse.
      PS there is now the video of me in the post that did not load earlier.

  3. It would have been quite frustrating for you Denyse and we take so many things for granted in daily life don’t we? #lifethisweek

    • It was confusing and frustrating because each of us has foods we enjoy and they are not always on the list of recommendations from the dietitians. That was why I made up my own and kept on going with nourishing myself as best I can. Still do.

      Thanks Sue,

      Denyse.
      PS there is now the video of me in the post that did not load earlier.

  4. Denyse
    This post brought back memories of when I was reading along with you as you received the diagnosis and then progressed through your treatment, initially losing so much in terms of what you were able to safely eat and then progressing with a more ‘normal’ textured diet as you recovered.

    Well done!

    SSG xxx

    • Thanks so much for remembering. I obviously had these photos from back then. Now I look back I think I did really well because, even with a leg that was recovering from all its surgery I still had to do the cooking.

      It was better that way, but there were days I would cry from frustration at lack of options for me! I soon got over it of course. But it is a grieving to lose that ability to eat and nourish as I had.

      Denyse.

      PS there is now the video of me in the post that did not load earlier.

  5. I remember when you were going through this and the way that you brought those treats back in. We take so much for granted, don’t we?

    • Thanks Jo, I did re-use photos from then too.

      I found my repertoire of meals was not bad and I knew I had to get creative for red meat intake (iron very low, and I hated the tablets) so a LOT of mince meals were created.

      Very hard to make a lot of variety and I missed texture in a huge way, which I was able to experience once I got the upper prosthesis almost 2 years ago.

      Denyse.
      PS there is now the video of me in the post that did not load earlier.

  6. We take so much for granted, don’t we? I think you should be so proud of how well you’ve adapted and nourished yourself post surgery. I am sure this post will be so useful for others facing similar surgery. Does this make you a food blogger now?! xx

    • Yes we do but once I had that diagnosis I did wonder (and worry) a lot how I would manage. Once I realised post surgery one that I could do this for myself rather than under anyone’s specific instructions then I did see some light. It was my GP who told me to do that. Always been grateful for that.

      Definitely food blogger!

      Thanks Sam,
      Denyse

      PS there is now the video of me in the post that did not load earlier.

  7. Eating and drinking are both things we take for granted, don’t we? It would’ve been tough to get to where you are now and I think this post highlights what we shouldn’t take for granted and also what can be done if we do end up with head and neck cancer. Thanks for sharing, Denyse!

    • Yes I remember sitting with B before the first surgery and bursting into tears admitting I did not know how I could deal without being able to comfort eat…..already worried! It turned out, I could in those very early days as survival is such a big instinct.

      I do still eat sometimes for comfort or plain enjoyment but it is never excessive and it is often just a part of my overall daily plan. Working well actually.

      Head and neck cancer remains a very rare one. It is, however, growing in some cases based on diagnosis of HPV related hnc. Mine was not that.

      Thanks Sanch.

      Denyse.

      PS there is now the video of me in the post that did not load earlier.

  8. I understand your eating challenges Denyse even though I haven’t had HNC. I had stomach issues a few years ago and for almost three years could only eat soup. I enjoyed seeing what you were able to eat in photos

    • Wow Jennifer how awful and limiting that must have been for you.

      Soup for the Soul is a fundraider for Beyond Five’s HNC because of the limited eating options many post head and neck cancer have.

      I admit soup is good but not every day…and night…you did well!

      Thanks Jennifer

      Denyse.
      PS there is now the video of me in the post that did not load earlier.

  9. Hi Denyse, learning how to eat again and take in enough nourishment is such a challenge for Head and Neck cancer patients to overcome. Well done. Allied Health Professionals like Speech Therapists and Dieticians are the unsung heroes of healthcare. I would have loved to have been a dietician! regards Christina

    • Yes it seems you might know a bit about this from your current work, Christina.

      I am grateful for all of the allied health professionals who are part of head and neck cancer patients’ progress and recovery.

      Thank you.

      Denyse.

      PS there is now the video of me in the post that did not load earlier.

  10. I found this really interesting Denyse, working out what you could eat, what the best nutritional value was to help you recover and how the surgeries impacted on your abilities. Thanks as always for sharing these insights with us and congrats on the video, you did so well. I agree with your earlier comment, once a teacher, always a teacher!

    • Thanks so much Deb. I hope. as time passes, some things here might be helpful with the family member of yours who is recovering from HNC too.

      Safe travels home!

      Denyse.

  11. I read a few of the blogs on this thread and wrote some lengthy comments. I am such a novice at this blogging caper – I couldn’t log in, wordpress was telling me I had the wrong account, I tried to like a few posts but it wouldn’t let me – the list goes on – so Denyse, I do hope my post about “dates” arrived somewhere as I can’t see it, I love the posts on this feed and was very annoyed Deb that my brussell sprout comment and feedback disappeared into the ether.

    So on the upside – Dense the video is fabulous, as mentioned you need to do more ‘to camera” work. My post ( if it ever turns up 🙂 was about the exploration of different cuisines for dysphagia, but as I understand it Denyse your issues are more around chewing as apposed to swallowing ? I guess I’ll just keep at this so I may end up as proficient as all of you on this blog.

    • Your post is here. Thank you for linking it up.

      I had to approve your comment here as my system is set for the first time someone ‘new’ writes a comment, I approve it first.

      As for others’ posts, each person has differing blogging platforms. Mostly WordPress and Blogger. These have their own ways of you, as a new commenter, logging in to comment.

      All of the above was set ages ago because of ‘spam’ and ‘junk’ comments needing to be filtered first by each blog ‘owner’. Pretty sure, if you have a comments section on yours that will have been set for you too.

      I have been learning about blogging and getting help from other bloggers for nearlyt 10 years and my ‘tech guy’ who set me up for past 7. He made it a very simple set up a few years back so I am almost 100% self-managing.

      May I add, you have had an enormous amount on doing Cert IV, setting up the blog, webpage etc…that IS a lot of learning in a short space of time!

      Now, about my issues. Yes, chewing and getting food to a standard that can be swallowed is my issue. I also have, as my team point out, more hardware inside my mouth than a normal mouth so small amounts only can be eaten. I sometimes find a teaspoon helps me more than a larger spoon. When I was pre-teeth on top it was a huge challenge physically to get the food to be well-‘chewed’ by moving it back and forth with my tongue to back of lower 8 teeth. But we did it.

      Amazing isn’t it what we can do when we put our minds to it. The piece to camera was a one take! I did some media training many moons ago as a principal and it stuck!

      Denyse.

  12. You’re amazing, Denyse.

Denyse values & reads every comment written, thank you. There is always a reply.

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