Thursday 29th July 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

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Share Your Snaps #3. 15/51. #LifeThisWeek. A Love Story. 30/2020.

Share Your Snaps #3. 15/51. #LifeThisWeek. A Love Story. 30/2020.

In July 2018 I met the members of the Central Coast Head and Neck Cancer Support Group at the first Soup for the Soul event in Gosford Hospital’s Central Coast Cancer Centre. That day was the first time I met other people who had been diagnosed with a head and neck cancer. I was “still” toothless but was made very welcome. Interesting isn’t it that it took me a year to get out to meet anyone at all in a setting like this. My surgeries and treatments for my head and neck cancer were all in Sydney. I had no idea of what support there was where I was now living until that month, close to World Head and Neck Cancer Day 2018, when I was invited by Lisa Shailer the Nurse who oversees and assists all head and neck (and lung)cancer patients who receive diagnosis and treatments at the centre to attend. I met many of the members, and it was good to share our stories where we could.

The couple I will now introduce, with what I have named  ‘A Love  Story’ are Stuart and Jill.

Stuart shares the story now after some questions for this post. Thank you Stuart and Jill for sharing.

We are Stuart and Jillian (Jill) Garfatth.  We have been  living in the Central Coast town of Toukley for the last 6 1/2 years.

 

How did head and neck cancer affect your lives?

The cancer had a very significant effect on both of us, of course, more so Jill than I.   It has completely changed our outlook on our lives, we realise how incredibly lucky we are to be living in Australia,  particularly the Central coast, because the treatment Jill was able to have has left us in no doubt that it is the best in the Western world, both medically and the people who cared for Jill in her time of need, of course the financial cost was virtually nil, which was a great help in eliminating that particular stressful component of treatment. We both have a vastly different outlook on life, we do things that we normally would not do,  get out and about, travel internationally much more than we normally do, and enjoy every minute of it!

 

 

How long have you both been members of the Central Coast Head and Neck Cancer group?

We have been members of the Central Coast Head and Neck Cancer group since August 2015, and it has benefited both of us a great deal, particularly the knowledge that we are not alone is a major factor of our membership of the group.

 

 

Do you have any particular stories to tell from your involvement there?

We don’t have any particular stories as such, but we always look forward to the meetings, gaining and sharing information about a great range of subject matter pertaining to Jill’s and everybody’s treatment and experiences. Of particular note presentations by people who are at the ‘coalface’ of research and treatments, they just reinforce the value of on-going research regarding advances in cancer treatment, very heartening indeed!

 

 

There is a story about your motorbike, and why it is special, can you share more?

Yes, there’s a bit of a story about my Sterling Autocycle motorbike. In April 2016, my twin brother rang me and suggested I get on the internet and have a look at a rather unique motorcycle, built to order by The Black Douglas Motorcycle Co. in their workshop in Melzo, just south of Milan, Italy. The company is registered in the U.K. but each bike is hand made, taking about 200 hours per bike, and no two are exactly alike, given differences in overall colour and applied finishes, like pinstriping, and other materials used in their construction.
I told my brother that I thought they were rather nice, and certainly ‘different’ to what is being mass produced by the very large manufacturers, but I could not see me buying one as they were a little ‘pricey’, and I didn’t see a need for me to have one. He replied, “Well, I’m buying two, one with a 230cc motor, and the other with a 125cc motor, and you can have the smaller one”.
“WHAT!, you’re paying for both?!,  I was stunned to put it lightly. Well, after getting over the surprise, I contacted the company founder, Fabio Cardoni, and set the wheels in motion to import the first two Sterlings into Australia.

Can you share more please…I know there IS more! 

As my brother is not on the internet, everything fell to me about liaising with all the relevant Authorities, both in Australia and Italy, little did I know what was to come!. Our greatest stroke of luck came about when I contacted the owner of Ballina Motorcycles, Joe Fisher, who has over 44 years experience in the industry,  he proved to be fundamental to the successful outcome, that took 3 years to bear fruit, and have our bikes registered to ride in Australia, his tenacity and unflagging determination, despite some very serious setbacks, was incredible, but for his efforts, our two bikes would never have been imported and registered here, his honesty and dedication to the task was incredible to see, we cannot thank him enough.

There is a down side to the whole saga though.  Our bikes landed  Australia June, 2016, and after a minor delay, we took delivery and put them into Joe Fishers hands, and he started what turned out to be a 2 year process of getting them legal for road use, and boy, what a story that was! Then towards the end of November 2016, the company ceased trading, it was bankrupted by some new owners who thought they could do better than its founder, Fabio Cardoni, so our two Sterlings are now the only two in Australia, and ever will be.

 

 

Please tell more about how the ribbon for Head and Neck Cancer (named for Jill) came about.

The head and neck cancer ribbon I have put on at the front of each side of the petrol tank came about when I soon realised that when the bike was out in public, it attracted a lot of attention,  many many photographs  taken, many questions are asked,  I was even videoed  once whilst riding, so this got me thinking.  I had the ribbon professionally designed and applied, so that whenever an image of the bike was taken, and published, particularly on the internet, the public profile and awareness of head and neck cancer could grow, which it has, as the image has been seen in the U.K., Europe, North America and Canada.

 

 

What else would you both like to add to this love story?

I had Jill’s name applied within the ribbon for two reasons. One, the bike is unique and very pleasing to the eye, and two, so is Jill!

As my bike is the only one on this planet with such unique livery, and Jill is the only Jill also on this planet, I felt it fitting that I should pay my homage to Her by naming my Sterling after her, and ever it will be.

 

Thank you Stuart and Jill for sharing the story of love, as I named it. I know you won’t argue there. I trust that there are many more days to come, sharing the bike, its story and the head and neck cancer ribbon…once we get through the challenges our country is in now thanks to the COVID19 pandemic.

This was a Share Your Snaps with a difference, and I am glad I saved the photos and story till Easter. We all need a lift in spirits I think and with this story I know I was smiling as I compiled it.

To Love…and Stuart and Jill.

 

Denyse.

In writing here,  partly in my role as a Community Ambassador for Beyond Five, the organisation which helps raise awareness of head and neck cancer which is Australia’s 7th highest, I acknowledge Stuart and Jill are also raising awareness with their bike and meeting attendance at the Central Coast Head and Neck Cancer Support Group. Coming up in July, it’s unlikely there will be a Soup for The Soul at the Cancer Centre as in 2018-2019 – sorry Stuart, who enjoys serving the soups with Jill and sampling them too, so it’s vital we continue as individuals and groups to share the knowledge we have about our head and neck cancer stories.

 

 

Life This Week. #184.

Life This Week. Link Up #184.

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 and it’s a bloggy thing to do!

* 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 and any that are overly religious or political or in any way offensive  in nature.

* THANK you for linking up today!

Next Week’s weekly optional prompt is: 16/51 I Heard 20.4.2020

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