Tuesday 3rd August 2021

Head & Neck Cancer: Eating & Drinking Challenges. 29/51 #LifeThisWeek. 88/2021.

Head & Neck Cancer: Eating & Drinking Challenges. 29/51 #LifeThisWeek. 88/2021.

 

July: World Head and Neck Cancer Day. 27.7.2021.

As it’s July, I am publishing more posts relating to Head and Neck Cancer as 27 July is World Head and Neck Cancer Day. It only started back in 2014 I think, with Michael Douglas the actor making the speech to open the world congress for all Head and Neck Professionals. Michael has had #hnc as it’s often abbreviated.

In my role as an Ambassador for Head and Neck Cancer Australia, I will share more on-line and links about it too.

Blog Disclaimer: see end of post.

Denyse:

Those of you who have followed me before and since I was diagnosed with a head and neck cancer, know that I continue to write and share about this awful cancer which affects more people than ever. And, for me, back in 2017 I was completely ignorant of its existence.

To inform, educate and to make aware is what I like to think is something I can contribute these days on-line.

I’ve been given a new book to help cancer patients and their carers to read and review. It’s by Dr Toni Lindsay, a qualified Clinical and Health Psychologist who works in Oncology at Chris O’Brien Lifehouse. This quote resonated with me, as I am guessing it would with the other people I have mentioned in this post:

Eating is one of our most social activities and often forms much of our connection and engagement with our family and friends. Feeling you are not able to engage in this way can be overwhelming and isolating. So if you are likely to be unable to eat for extended periods of time *it is perhaps worth thinking of ways in which you can continue in social activities that don’t involved food. 

*We understand this, of course, as part of our recovery but, we are also able to eat again and yet, it remains a challenge. Please read on! Thank you.

This is why I am sharing about the challenges of eating and drinking after head and neck cancer with a lot of help from my friends, and Head and Neck Cancer Australia.

This is one place you could find information:

https://www.headandneckcancer.org.au/health-and-wellbeing/diet-and-nutrition/nutrition-videos

This image from the day of filming at Chris O’Brien Lifehouse.

Here is my blog post about that day, the ways in which I have had to adapt my eating and drinking and more.

And those of you who know me in real life, know that I can socialise but it’s helpful for me to have a coffee and something sweet to eat so I tend to choose going to a late morning tea with friends and family and they may have lunch. I cannot eat a meal outside the house unless it’s with family and I can pick & choose. Sound fussy? Not really but practical.

You see my mouth can only hold so much food at a time, and chewing only has two small areas in my mouth, towards the front and food congregates there as I try to get it right for swallowing with ease and not choking.

It’s something that you cannot tell by looking at me, right? But it is like this and I now share more frankly as a result.

I also lose fluid at the side of my mouth unless I keep up with the paper towels/tissues. My upper lip was reconstructed and it does not seal any more. However, it is all pretty good, and the more I share, the less I am embarrassed I guess.

Maureen:

Like me, Maureen is often seen on social media with a coffee in front of her. It is NOT the same double shot as mine but one she truly enjoys and can have it with friends.

Maureen is  a Woman of Courage who told her story here.

She sent me these notes about her eating & drinking challenges.

What adaptations have you had to make to daily life and eating/drinking post head and neck cancer?

  1. My case is unusual and my eating is marred by dribbling so I have to have facecloths to my lips every time I consume anything.
  2. I’ve lost teeth and my marginal mandibular nerve.
  3. I have two boxes of cloths, one on each end of the sofa and I take at least 3 wherever I go.
  4. Believe me, tissues are not enough, even big fat hospital tissues. I
  5. have to do a machine wash every day.
  6. Never had any help with this as I guess there is nothing else you can do.

What advice would you give to others as they recover and are back ‘in the real world’ post HNC?

My advice as such is that it is good to meet up with other non-social eaters and have a coffee.

Coffee is manageable – in fact I often have two cups when I’m with “normals” who are eating. Maureen’s personal blog about Head and Neck Cancer is here. 

Maureen is one of the leaders of this amazing Head and Neck Cancer Facebook Group and she is also the person who blogs about head and neck cancer here and has been instrumental with other people connected with head and neck charity in New Zealand, starting this way of helping others. Head and Neck Cancer Aotearoa Charitable Trust. https://hncsa.org.nz/

IF a family member or someone you know does have a diagnosis of a head and neck cancer or that person is a carer, the value of a good facebook group cannot be over-done.

The friendly space that IS this group for eligible people to request membership is a good one. https://www.facebook.com/groups/HNCSupport.Aotearoa

There are people from all over the world but the group is not huge so personal connections can be made. It is mainly made up of New Zealanders, and Aussies too…along with those from the U.S. There are questions to be answered to join and it IS strictly for those with a head and neck cancer. Link is here.

 

Yvonne:

Readers here have met Yvonne via her post as a Woman of Courage here. 

Yvonne has appeared in an on-line Soup for The Soul event for Head and Neck Cancer Australia last year when we were prevented from doing anything ‘live’ because of COVID. Yvonne’s cancer has changed so much about her life, and the link here, to her newly published book tells more.
1.What adaptations have you had to make to daily life and eating/drinking post head and neck cancer?
  • Meals and what they consist of have completely changed for me.
  • I note now I eat a lot more vegetable and pulses.
  • I do add fruit to my smoothies but sadly just biting into fruit and eating it is out of my range unless it’s mango, lychee or something of that consistency.
  • Drinking alcohol is now pretty much non existent and I was quite the drinker in that I was a party girl and loved nothing more than to sit with friends over a bottle of sparkling or 3 !

So that has also changed for me. It has had a bigger impact too I think because pretty much COVID hit when I was convalescing and of course I had already quit my job and moved countries.

Picking at food and tasting whilst cooking is non existent too these days, I miss just jamming my finger in my mouth to taste stuff, my taste buds thankfully have come back but I still surprise myself with flavour layering occasionally and find sharp and sudden flavours ( acid and sour) sometime confrontational.
What advice would you give to others as they recover and are back ‘in the real world’ post HNC?
I am also very keen to see more support around the emotional and psychological fallout of HNC treatment, I think this has a huge impact as does food in terms of how people come out the other side.

Do my program!  : )  Mind Food Body Program as part of the nofeedingtubes movement.

Yvonne introduced me to this word. Yes, I understand this well. Thank you.

Commensality – eating and drinking at the same table – is a fundamental social activity, which creates and cements relationships. It also sets boundaries, including or excluding people according to a set of criteria defined by the society.

 

Marty:

Marty is a fellow Ambassador for Head and Neck Cancer Australia. He and I chatted recently about the challenges of eating post head and neck cancer.

We met back in September 2018 and I was so excited to not only meet up but to share a photo as I had only just had my “teeth” installed.

Interestingly some of his responses were ones I have heard before from members of the Central Coast Head and Neck Cancer Support Group.

Marty is more than 17 years post his cancer treatments. Radiation was one.

Marty spoke of limitations of eating rice, fried rice and spicy foods.

Food that were previously enjoyed. It seems taste and texture remains an issue.

And often because of the loss of salivary glands or damage, swallowing becomes hard.

So like others I asked, Marty finds he has to adapt his eating practices often making sure there is a liquid element to the meal such as soup – this is why the fundraiser for head and neck cancer focusses on soup – and to have a drink of water nearby.

Most of us carry out own small bottles of water.

For some of us, it’s a lack of saliva and we need to replenish our mouths to be able to talk. For others it’s about making sure some lingering food crumbs and pieces can go down.

This group photo of some member of the Central Coast Head and Neck Support group at Christmas time 2020 tells an unwritten story.

 

At this table there are 7 head and neck cancer ‘survivors’.

  • Each of us has had different treatments and each of us has been left with eating (and sometimes drinking) challenges when we go out.
  • There were some here who had to have lots of gravy (as an extra) added to their meals, others asked for their meal to be “blended”…oh that is not something some places like to do.
  • Seriously hard on the person who could have enjoyed the baked dinner that way.
  • Instead, from memory the meal became mashed potato and gravy.
  • Others had to make sure there was nothing spicy or with chillis.
  • And as for me, you already know, I chose what I knew I could eat from a mouth concern and how much my stomach could handle.
  • I enjoyed coffee and some date loaf. I have learned not to be embarrassed because the social part of the get together was for me, the important part.

And More From Denyse.

I cannot use a straw any more. My mouth does not seal.

I can have a Christmas lunch. It just needs to be adapted by me.

Here is what I ate on Christmas Day 2020 at home. We were in a covid concerning time and chose not to go to Sydney. So, I made up for my disappointment this way.

Soup for The Soul.

Sadly, due to on-going Covid19 restrictions and closures in our area of New South Wales, this event will not proceed as hoped on World Head and Neck Cancer Day. We “are” however, hopeful of having it at another time. 

Tracey and Me: Soup For the Soul.

Tammy.

In keeping with my own learning about the effects of head and neck cancer, I am adding a paragraph, written by a woman who is both carer and wife in a long term marriage and as things go, can never again have the pleasure of the simplest thing: eating a meal with her husband who has had devastating head and neck cancers taking away his ability to talk – he can communicate via Ipad, but his wife can no longer remember how he sounded…but it’s this, as she gave me permission to share, that I feel needs to be thought about and taken into consideration:

I also think of those who never eat again. For many of this group, communication/talking is not an option either. I know its a very small/rare group , but it’s one dear to me. Socialising involves talking, eating and drinking with others . Its what makes us Human Beings. For a small group of H&Ners, none of this is possible.

Thank you Tammy. I am grateful for your words.

Denyse.

My stories and photos along with suggested links and websites must not be seen as medical advice. I write this blog from my experience as a head and neck cancer patient. Words from others are accordingly from their personal experience and not to be taken as nutritional/dietary/medical advice. Seek what you might need from qualified health professional  who understand the needs of cancer patients.  Denyse Whelan. 2021.

Link Up #249

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Comments

  1. Thank you, Denyse, for sharing your story. I learned about the challenges that HNC survivors have with eating and drinking and how you’ve all adapted to continue enjoying food and the social aspects of eating and drinking with other people. You’re an excellent ambassador. Have a great week!

    • Denyse Whelan says:

      Thanks so much Natalie.

      It’s good to know what I write helps for increased awareness of Head & Neck Cancer.

      The blog is a very handy tool for this.

      Denyse.

  2. It’s an interesting insight as those of us without personal experience tend to think once it’s fixed it’s back to normal, rather than a recovery. Especially eating and drinking that really is a large part of the day.

    • Denyse Whelan says:

      So true. In fact, since getting the upper prosthesis in, aka, getting teeth and smile back, that is the assumption. OK, off you go, and eat and drink normally.

      Until you (I) try and it is nothing like it.

      That’s why I wanted to highlight it. Instead of making assumptions its a reality check for me and those who know me. I guess too, to be fair, we also don’t want to “bore” people with what is reality.

      I did, however, need to face up to this reality myself as I said in the post and to finally accept it.

      Thanks Lydia.

      Denyse.

  3. Thank you for raising awareness about this – as you say, talking about it both lessens the embarrassment and the isolation as eating and drinking are social activities most of us take for granted. HNC is lucky to have you as an ambassador.

    • Denyse Whelan says:

      Thanks so much Jo. Yes that is so true, at least now it’s out there and if I was to get to meet up with you, then I would need to see that there is a coffee/cake/something I can eat on the menu.

      I really still want to socialise via eating and drinking but it seems the morning tea or light lunch is my limit.

      Looking at food posts (not just yours, which are brilliant) can make me a bit wistful but I also acknowledge that not only my mouth but my gut is partly the reason I probably can’t eat large amounts either these days.

      Back in the “olden days” we used to put on 3 course dinner parties. As did my parents.

      Denyse.

  4. Thanks Denyse for being a wonderful ambassador and raising awareness. Until I read about your experience, I didn’t know about Head & Neck cancer. You and your fellow survivors have come such a long way and have shown great strength and courage. Take care and thanks for #lifethisweek

    • Denyse Whelan says:

      Thanks for your kind words, constant support and helping us by staying aware yourself, Sue.

      You’ve been here since Day 1 for me and I always appreciate that! I need my cheerleaders.

      Denyse.

  5. Thanks Denyse for sharing your eating challenges. Even though I’m not a HNC survivor is bro understand your challenges. In 2015 I had surgery to correct a stomach problem. For a few years before I was very limited in what I ate, until it was just fluids. I do understand how difficult it is to have a social life. It didn’t really bother me just having coffee when we went out but it always bothered those we were with. Thanks also for introducing us to your guests.

    • Denyse Whelan says:

      How interesting when you wrote “it didn’t really bother me but it bothered those we were with”….goodness me. Where is people’s compassion and understanding? If they were trying to show they were sorry for you, it must not have felt that way.

      I am so sorry that happened like that back then Jennifer.

      I am glad you are OK now.

      Denyse.

  6. Denyse, thank you for sharing so openly the impacts of having head and neck cancer, including eating and particularly eating socially. As you might know, I am grieving the loss of my very dear and long time friend Denise to head and neck cancer (ACC) – just 6 days ago. I met with her frequently for lunch, so I was aware of the impacts that she had around eating and drinking, many of them the same as you and your guests have mentioned. I remember her telling me how sad she was that she could no longer have Vegemite as it burned! I think you do a fabulous job as Ambassador for head and neck cancer. They are so lucky to have you. Have a wonderful week Denyse! xo

    • Denyse Whelan says:

      Thanks so much Min.

      You are a kind and compassionate person and I am sure your dear friend loved your support and care. I am so sorry HNC took her life far too early.

      Vegemite does sting me a bit now too. Funny how some tastes change.

      It is an honour to help others.

      Denyse.

  7. It was really interesting to read this Denyse. Thanks for sharing your thoughts on these important issues. As you know my MIL passed away late last year from oesophagus cancer and had great difficulty with eating in her last few months. I remember your thoughtful suggestions at the time. I agree with Min, you are a perfect ambassador for Head and Neck cancer and have a wealth of knowledge to share. Thanks for raising awareness, as it’s much needed.x

    • Denyse Whelan says:

      Thank you so much Deb.

      I do think of your MIL and others who have had life taken from them too soon with this horrid disease.

      To not be able to eat nor drink does takes away a prime need to survive and one that is important in socialising.

      I am honoured to be able to use my skills and experiences to help others as a Head and Neck Cancer Ambassador.

      Denyse.

  8. I really appreciate that you give cancer and cancer patients a voice Denyse. This is so important. There are so many treatment options for breast cancer, and so few options for other types of cancer. It’s an enormous imbalance. These are incredible stories.

    • Denyse Whelan says:

      Oh Jody, dear friend, welcome back and I am sure most of us here would agree, it is great to see you here but also we cannot fathom the depth of loss after the awful and sudden death of your husband.

      Thinking of you all…a terrible time no-one could have imagined.

      I do think different cancers attract more funding and of course, air time on media because of their nature. However, the head and neck cancer community is doing what it can to raise the awareness via sharing it with member of Australian Parliament. Sadly, covid has prevented this from happening to date.

      Take care, you are indeed a survivor of so much.

      Denyse.

  9. You’re such a great ambassador for head and neck cancer, Denyse. Thanks for sharing your thoughts and these stories. I admire your resilience and how you have worked with what you’ve got to eat food that is nourishing and enjoyable.

    • Denyse Whelan says:

      Thanks so much Sam. I did get by with a lot of help from my blogging cheerleading community in those early days and I thank you for much of that too.

      It’s been an interesting way to learn more about how to feed myself with both foods that are enjoyable and pleasurable along with those which nourish.

      The hospital dietitian taught me about value-adding. For example. warm a little lemon syrup cake and add something from the dairy family to it.

      Denyse.

  10. Hi Denyse, as you know we have head and neck cancer patients on the ward where I work. We’re raising money this month with a Step Challenge. I’m not sure how much has been raised so far but we’re enjoying the challenge of getting the highest step count for the day. It’s been a great team building activity and an excellent way to increase our step count. Nurses usually walk a lot anyway, but many of us walk when we’re off-duty as well.

    Your post reminds me of the importance of the speech therapist and dietician in the team caring for head and neck patients. It’s such a huge change to your ability to eat and enjoy food. You have adapted well, although I imagine some days the challenges do get you down. Good on you for your ongoing work with Head and Neck Cancer Australia.

    Regards, Christina

    • Denyse Whelan says:

      Thank you Christina, yes it’s always helpful for patients to have a number of health professionals to guide us in our early days of recovery.

      Each person is different of course, and each person’s enjoyment of food prior to their cancer treatments will guide their future nourishment. There was no point me going down a path of adding lots of milk-based drinks/meals when all they did was act up in my gut.

      I was told by my GP in those early days home, to eat what I liked and what I could eat and in that way I became my own “nutritionist” I guess.

      Good luck with the steps challenge.

      Denyse.

  11. Hi Denyse – I’ve come to see that we don’t appreciate the miracle of our bodies until something goes wrong. The tiniest thing can make a huge difference to the ease with which we live. That little calf muscle tear of mine put my walking on hold for over a month. My husband has had a couple of teeth extracted recently and it’s made chewing so much more difficult. He’s going to have some tooth implants done so he can eat meat again without chewing it slowly to death! Our doctors and dentists and specialists are so amazing with what they can achieve – but nothing beats the original creation 🙂

    • Denyse Whelan says:

      Yes Leanne, any imbalance or injury or cut to a part of our bodies changes everything.

      I have always found it interesting that people feel that having had surgery they then to expect things might go back to what they were. No, not at all. The body and brain has to adapt to the changes.

      I am still doing that. My mouth inside has skin in it that is from my leg. Leg skin is not suited to getting wet all the time so it can cause issues. I need to appreciate and understand this kind of thing more.

      Good luck to your husband. I hear you (him) on wanting to eat meat again. I might find it more challenging but some days there is nothing better than some small pieces of steak.

      Denyse.

  12. I love how committed you are to supporting others who went through what you did. And I remember after your surgery some of your struggles. xx

    • Denyse Whelan says:

      Thanks so much Deb and I appreciate how much you and others from my social media circle and blogging were/are there for me. I needed lots of cheerleading for sure. It helped greatly.

      Denyse.

  13. Denyse, thank you (and everyone else in this post) for sharing. I think many people are unaware of these problems that are common in people post-head/neck cancer and it’s so important that you people tell your stories!
    What had the most impact on me when I studied oncology nursing was the awareness of how devastating head & neck cancer is or can be. I didn’t know much about it before that, and had only met a few people who had come out of head & neck cancer. This feels like a long time ago now. But I continue this learning through your blog.

    • Denyse Whelan says:

      Thanks for bringing your words of wisdom gleaned from your work with head and neck cancer patients, Susanne.

      I agree, not enough is known about the long-lasting, life changing effects of head and neck cancer which is why, when I can, I use my social media presence and my blog to help raise awareness.

      And thank you too for sharing what you know about us!

      Denyse.

  14. I do believe talking about the reality of living post cancer treatment is amazingly helpful. It makes someone else who is living the same reality feel less alone. And for others to be aware of challenges someone they know might be facing. I know it’s been that way for me with talking to other post breast-cancer women.

    It was interesting to learn about challenges with eating in public. For me, a long dinner with friends (with wine) is one of my favorite things ever! It’s the thing I missed most with the pandemic. Here in the US, we are “opening up”, and we’ve been out a few times now eating with friends. Yes, I know our numbers of new cases are still dismal compared to other countries….but I’m thrilled I’m fully vaccinated and hoping for the best. I really do not know how I would deal with a future that did not involve communal eating at times!

    • Denyse Whelan says:

      Thanks for your insight about being someone who understands the ways in which we who have had cancer can support each other.

      Patricia, it is a huge change for us who have had head and neck cancer to realise that there can be no “going back” to what was and we need to adapt.

      I know that food and sharing it with others, is as my friend Tammy said where I amended my post, a very human need and experience. In her husband’s case he literally cannot.

      We mourn for a while for the life we had as we celebrate the life we have. No two ways about it, we don’t have the cancer any more but we have a new kind of life to live afterwards. Even with my research and experience I had no idea how tought it would be.

      As for Covid….we are back in full lockdown with millions not able to leave home nor work. Messy is how I would say Australia’s reaction to how to deal with covid is. I am glad you are sensing a return to what you can and like to do.

      Denyse.

  15. I am so glad that you have shared this with us all; I was unaware of the long lasting effects of this type of cancer.

    • Denyse Whelan says:

      Thanks so much Joanne. Blogging has its educative purposes too. I am privileged to be able to share and ask others to do so too. Not all I have known in this head and neck world of mine do well….and some are no longer with us. “That’s cancer” isn’t it?

      Denyse.

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