Friday 22nd October 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

Life This Week. Link Up #249

You can link up something old or new, just come on in.

* Please add just ONE post each week! NOT a link-up series of posts, thank you.

* 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. It’s a kind connection I value as a blogger! 

* Check out what others are up to: Leave a comment on a few posts, because we all love our comments, right!

* Add a link back to this blog in your post somewhere, or on your sidebar or let others know somewhere you are linking up to this blog’s Life This Week.

*Posts deemed by me, the owner of the blog & the link-up, to be unsuitable for my audience will be deleted without notice. These may include promotions, advertorials, sales and any that are overly religious or political or in any way offensive in nature.

* THANK you for linking up today! Next Week’s Optional Prompt: Share Your Snaps. #6. Mine Will Relate to Head & Neck Cancer Awareness. 

You are invited to the Inlinkz link party!

Click here to enter

 

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Women of Courage Series. #26. Maureen Jansen.10/2020.

Women Of Courage Series. #26. Maureen Jansen. 10/2020.

A series of blog posts on Denyse Whelan Blogs to be found here from mid-May 2019: Wednesdays: each week until the series concludes in 2020.

Here is the introduction to the series.

Courage is strength in the face of pain or grief. It’s doing something that frightens you. We face situations that demand courage every day. These situations provide us with choices, and the way we respond to those choices determines our future. Dayne Shuda.

I am so pleased to introduce Maureen Jansen who is 73. We have ‘only’  met via social media thanks to us living on opposite sides of the Tasman Sea. Maureen is a New Zealander. We ‘met’ in mid 2018 via our common connection: Head and Neck Cancer. I suspect, even without this between us, the teaching and ‘grandmothering’ along with outdoor photography would also connect us!  Maureen tells her story. It is one of amazing resilience and testament to her strength of character and will. The best bit…is that in June 2020 we have plans to meet! More on that another time. 

Thanks Maureen for sharing your story today as a Woman of Courage: 2020.

 

What have you faced in your life where you have had to be courageous?

I’ve had to dig deep four times after receiving cancer diagnoses. My first diagnosis of advanced ovarian cancer was in 1996 and I decided to be brave to protect my children who were then 13, 17 and 19. The youngest was living at home and I was more scared of traumatizing him than of anything else. I’ll always remember a fellow patient in my ward saying that the first thing she said when the doctor told her she had cancer was “My kids”, as tears poured down her cheeks.  I now think that my reaction was too stoic and not open enough with my youngest son. And by the way, that advanced cancer diagnosis proved to be of a type of ovarian cancer which usually responds well to treatment. I was well and truly cured but the repression of emotions initially, followed by a complete turnaround in prognosis later, led to a very mixed up and depressed me when I returned to work after it was all over. The vagaries of the human heart!

 

How did this change you in any way? Please outline further if this has been the case.

The ovarian cancer diagnosis and later the head and neck cancer diagnoses changed me a lot. I had counselling and anti-depressants which both helped me deal a little bit better with my former anxieties, funnily enough. I have had to make a conscious decision to get over fear of needles and other painful procedures because I know that they will be part of my life now although I am currently very well. I’m not as scared of physical pain as I was, and even had two fillings the other day without an anaesthetic. I’ve learnt to chant a little rhyme in my head when needles and drills do their thing. It’s usually only for a short time. My proudest moment was when I had some clips out in a wrist wound five years ago. The nurse was struggling and each time she used the clip removing device, there was a surge of pain. I did my deep breathing and we talked and laughed as we went through each one. It was a strangely uplifting moment.

 

Is there something you learned from this that you could recommend to help others who need courage?

I really think that learning some specific coping strategies from a psychologist is invaluable. I have found many mindfulness tools excellent. Mindfulness, walking, taking photographs of nature and posting them online … These things have helped me as well as trying to live a productive life with plenty of service to others. I’m not good at self care but we should all do it!

 

Do you think you are able to be more courageous now if the life situation calls for it? Why is that?

In terms of my health I think I will be braver but other situations like dealing with conflict and communicating with others are situations I find take the most courage, honesty and wisdom. I’m still learning.

 

Is there any message you would give to others facing a situation where courage could be needed?

It can well up in you when you least expect it. Often things are not as bad when you are IN them as they look to an outsider. When your back is against the wall, some sort of survival instinct seems to kick in. If it doesn’t and you feel frightened, you have every right to be. Psychological help makes a huge difference when fear and anxiety become too much to bear. Seek help!

 

Thank you so much Maureen. For sharing and for being here to tell the story. What a story! I have so much admiration for you. Looking forward to catching up “in real life” as they say. Meanwhile, I am adding below something about the facebook group.

Denyse.

Social Media: follow Maureen here.

Blog/Website: hncmaureen.com

Twitter: @HNCMaureen

Instagram: @birdlikeme

 

 

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. 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.

Joining each Wednesday with Sue and Leanne here for Mid Life Share the Love Linky.

On Thursdays I link here for Lovin Life with Leanne and friends.

Copyright © 2020 denysewhelan.com.au – All rights reserved.

 

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