Wednesday 4th 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

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. #53. Yvonne McClaren. 71/2020.

Women Of Courage Series. #53. Yvonne McClaren. 71/2020. 

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.

Whilst I have not ‘met’ today’s Woman of Courage in real life, as they say, we have most certainly connected by the common (and not ever-welcomed) diagnosis of Head and Neck Cancer. Yvonne, who is 54, has shared her story below via the responses to the questions but to know even more about her and how she is facing life full-on these days, check out her links! Recently she appeared  too as part of the Beyond Five live video segment relating to food preparation and eating for those affected by head and neck cancer, particularly as in Yvonne’s case and others, relating to swallowing.

Dysphagia is the medical term for difficulty in swallowing. This includes problems with sucking, swallowing, drinking, chewing, eating, dribbling saliva, closing lips, or when food or drink goes down the wrong way.

The link to the video is at the end of this post.

Thank you Yvonne for sharing.

 

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

There are a few times in my life where I have had to reinvent myself both professionally and personally. I think my latest challenge with finding a large tumour on my left tonsil has been my greatest challenge.

There have been other life-threatening situations – involving motorbikes, but this was really out of my control. Once diagnosed I responded with ‘silence’ – I went into myself I realise now.

It was a difficult time as I had relocated countries, left my full time job to start a new life and career and had my heart broken all in the space of 8 weeks, then a cancer diagnosis.

Suffice to say, I had little time to grieve anything, it was get on with it and start the treatment. Everything was put on hold in terms of dealing with loss of income, loss of love and in some respects the loss of my beloved father a year earlier.

It’s only now, 18 months after diagnosis, that I am starting to mentally deal with some of the other issues going on in my life at that time.

 

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

I had no time to consider anyone or anything else really.

I was on my own and thankfully had my mum still in her own home where I could live whilst going through the treatment.

I had had a sore throat for many, many months and jokingly said to a friend “I think it’s cancer” not really believing it, turns out 6 months later I was right.

How has it changed me?

I listen to my body really closely now, I use to before, but this has made me very aware of what thoughts I have running through my head, what niggle is going on and why… it also made me realise that every second you spend worrying about some insignificant thing is wasted time.

Get on and do it and do it now. Whatever it takes.

I lost the last five kilos I couldn’t budge and then some, so that was great for me, not an ideal weight loss programme but it started me back on my fitness journey 15 kilos lighter.

I now have to learn how to eat again and for a foodie I have found this the most distressing, depressing and difficult side effect.

Food was/ is my world and I have had to retrain and rethink what that looks like now. It also made my fledgling idea about teaching culinary pursuits in a foreign country come to fruition.

 

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

 

You always have choices, for me, I sat with it and the implications and thought about the worst-case scenario.

I was also told by a well meaning nurse that my cancer treatment had not worked and there was nothing more they could do for me. That sort of puts things in a very stark perspective, it’s humbling and it’s frightening.

It’s also incredibly motivating when I discovered that was not the case.

Learning to manage emotions is something you also can practise and become the master.

I then figured well if that’s as bad as it gets (death / inability to function normally/ disability) then make the most of what you have now.

I also discovered that you lose “friends” along the way, whether they can’t handle the new you, or who you have become or are becoming is too hard for them I don’t know.

I have had to make an entirely new circle of friends and have reacquainted myself with ones I have not had much to do with for years.

What I can say is, you are innately very strong you just don’t know it yet.

 

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

Yes, I am doing things now that are very much out of my comfort zone, although some would say riding through Vietnam and Laos on the back of a motorbike during a typhoon is getting out of my comfort zone too, but this disease and its side affects have made me realise that everyone has a message and a story.

In many ways this disease has focused my life’s purpose, I had all the scaffolding ready but now I have the ‘reason’ to hoist the flag on top of the scaffolding.

 

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

Don’t spend time worrying about things that might happen, focus on the now and take it one step at a time.

There is literally  someone else worse off than you, I’d hate to be that person by the way whoever they are, I guess it’s all relative.

 

Do add anything else that you think would help others who read your post. 

 

My job as I see it now is to spend my time doing what I love, what I love is cooking and if I can help others with eating difficulties as a result of HNC and its treatment then that’s what I am going to do.

I come from a family of teachers so it is not surprising to me that ultimately, I want to use my skills to help others.

I have set up The Food Manifesto and Soup hug as a way to bring a community together that suffer from this debilitating side effect.

I like to think of myself as the food curator for dysphagia, the link between your dietitian and your kitchen.

 

What a story of resurgence here. I can say that because I did not know Yvonne until she found the friendly facebook group for Head and Neck Cancer Patients, Carers, Professionals and Families. It is here, too, where I ‘met’ another Woman of Courage Maureen whose story is here.   There is another Woman of Courage called Tara Flannery who shared about her head and neck cancer here.

And this Woman of Courage shared her story. She is Julie McCrossin AM, who is also a Community Ambassador for Beyond Five and is part of the webinar Yvonne appeared in below.

 

Thank you again Yvonne. I am so pleased you are doing all you can to be well and help others too.

This is the penultimate post in the Women of Courage series.

Denyse.

Beyond Five, where I am a Community Ambassador released this video live just before World Head and Neck Cancer Day 2020.

Please take some time to view…and see what Yvonne shares from her kitchen and share with others who may benefit.

Thank you.

Social Media Links for Yvonne:

Blog/Website:  www.thefoodmanifesto.com

Twitter: https://twitter.com/McclarenYvonne

Facebook Page: https://www.facebook.com/sustainablefoodandtravel/

Instagram: https://www.instagram.com/the_food_manifesto/?hl=en

 

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

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