Tuesday 28th June 2022

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

 

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest

Head & Neck Cancer: “Beyond Five” Ambassadorship.2018.130.

Head & Neck Cancer:”Beyond Five” Ambassadorship.2018.130.

Last week I wrote a post called Farewell and Hello. It was pretty long so I stopped at Farewell promising to be back for Hello. Here we go!

Regular followers here know that I was diagnosed with head and neck cancer (squamous cell carcinoma) in my upper gums and under the top lip. The whole story is here, in posts, from the day I was told until the recent post on adjusting my eating requirements when I am out of the house.

Hello, I am now a Beyond Five Ambassador!

How this came about was partly after this day in October 2018 when I was back at ‘my’ hospital Chris O’Brien Lifehouse, but I had offered earlier this year if there was any way I could help spread the news about head and cancer awareness I would like to do so. I had already been sharing the work of Beyond Five here on the blog for World Head and Neck Cancer Day 2018.

Following that day, the Board of Beyond Five met, Sr Froggatt and Professor Clark are board members and Nadia Rosin is Manager, Business & Communications,  and I then received a formal letter of invitation to become a Beyond Five Ambassador.

Role of Community Ambassador

  • • Share your personal head and neck cancer story for use in Beyond Five communication e.g. website, social media portals etc.
  • • Raise awareness of Beyond Five through family, friends, other personal connections.
  • • Where possible, attend events e.g. patient support group meetings, education days to help raise awareness of Beyond Five.
  • • Support Beyond Five grant applications where relevant e.g. as a consumer representative.
  • • Provide feedback to Beyond Five to help us improve and develop the way we work.

About Beyond Five.

Background

Beyond Five was established in December 2014 and is Australia’s only not-for-profit organisation supporting patients with head and neck cancer, caregivers, family and health professionals.

Beyond Five was established to provide evidence based, comprehensive, easy to understand and easy to access information to everyone, regardless of where they live.

Beyond Five is the first organisation in Australia supporting patients and their families through their cancer journey, from diagnosis to treatment and life after cancer.

Mission

Beyond Five’s mission is to improve the quality of life of everyone affected by head and neck cancer through education and access to support and to raise awareness of head and neck cancer nationally. We are committed to working collaboratively with all specialties across Australia to achieve our mission.

 

I have joined the inaugural Ambassador, Julie McCrossin and Marty Doyle too. Their stories and mine, can now be found here on the Beyond Five site. There will be more ‘thinking time’ for my involvement and what form it may take as everyone is going to be on a break soon. We are getting together in February 2019. I look forward to helping where I can especially now I am post almost all of my cancer treatments and now in ‘check-up and check-in’ mode.

I know that I am keen and ready to help others learn more about head and neck cancer as it is not well-known. In fact I had no idea you could get squamous cell carcinoma inside your mouth (and other areas of the skin inside the head & neck region, till my day of diagnosis in May 2017.

And here we are sending Season’s Greetings.

I wish that no-one had cancer of any kind, of course, but the fact of life is we do. I want as many do, to help pay back the time and effort and research that has gone into the amazing surgeries and mouth reconstructions I had. That I can smile and eat well again is testament to the wonderful work of my team and their integration of allied professionals too. I have written posts about how many helped get me well again. Now, it’s onward….and to say I am glad to be an Ambassador for Beyond Five is an understatement. It is an honour and a privilege to be in this new role.

I want to do the role justice, and help others as I too have been helped.

Thank you to the Board of Beyond Five for entrusting me with this role as your Ambassador.

Denyse.

Joining with Sue and Leanne here for Midlife Share the Love and with Leanne here for Lovin Life link up.

 

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest

Cancer Is Always ‘There’. 2018.84

Cancer Is Always ‘There’. 2018.84

It is rare these days for me to compose a post and publish it immediately. I have planned posts, scheduled posts and draft posts. Today is different.

I need to write out my truth and my feelings based on recent, significant events for me: a Cancer Patient.

What Do I Mean “Cancer is always ‘there’?”

  • Once diagnosed with cancer I held onto the belief, rightly or wrongly, that my surgery would eliminate the cancer in my upper gums and behind one side of my top lip.
  • It did. In terms of reports back from the many lab results, biopsies at the time of the major surgery in July 2017, and the reassurances from my professional team.
  • However, I do, like many others who have been diagnosed with cancer, “know” that it could come back in another way or form….and also that the reason for my four surgeries has been because I had/have cancer.
  • The many (22 now) visits to Westmead Oral Sciences to have treatments and checks for the progress of my mouth healing, stent wearing and health of my gums is because of cancer.
  • This came home to me yesterday, ONE week after re-gaining what I thought I wanted most: my smile, when it appears that the top lip (cancer site) is tightening again and I need to do some exercises to help it gain more suppleness.
  • There I was, thinking (albeit naively) that the cancer thing was almost gone.
  • Nope, no and not at all really. Check ups, doctor’s visits, mouth checks …..it is not gone nor over by a long way.

Explaining My Mixed Emotions and Responses/Reactions via My Photos.

 

Thank you for reading.
I wonder if any readers who have cancer/had cancer might identify with this.
I am a relative newbie (only 15+ months since diagnosis) yet it feels like I have had cancer forever.
I guess I do.

Cancer is always ‘there’.

Denyse.

Linking with Sue and Leanne here for MidLife Share The Love linky.

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest

Oral Health & More From This Head & Neck Cancer Patient. 2018.71.

Oral Health & More From This Head & Neck Cancer Patient. 2018.71.

I know!

Another post about Head and Neck Cancer!

But there is a very good reason why!

Not many people, including our “every day” health professionals are all that familiar with the signs of a possible Head and Neck Cancer. This is why, over the past month, there have been posts, tweets, instagram and facebook status from various people, including me.

This list of symptoms is from Cancer Council. Head and Neck cancer does not cover brain cancer.

On 27th July 2018 it was World Head and Neck Cancer Day. The 4th one ever. The first one held in 2015 after it was announced by former President Bill Clinton in 2014 and H&N cancer patient, actor Michael Douglas seen and heard here:

Do you know I disliked (hate is too strong a word) going to the Dentist?

I started when I was under 5. Apparently my teeth ‘came up decayed’ after an early childhood illness of mine and so a trek to a very painful experience at the dentist in Wollongong as a kid became part of my life. Urgh.

I had to have fillings and extractions (my 6 year old molars came up and were taken out!) without any anaesthetic. Thanks Mum and Dad (not) for never letting me know you could have a needle to dull the pain. Dad recently corrected me on this ‘fact’ saying he did not know either. The dentist, Mr Stone, worked in a surgery up some stairs in a  building in Crown Street Wollongong. Recently, at Westmead Oral Restorative  Sciences I saw ‘the set up from my childhood’.

My dental history, once we moved to Sydney (and I found out about injection for numbing the fillings!)  continued from 1962 until 2017:  with the usual fillings, removal of teeth in my latter years, root canal therapy and finally a bridge with a crown in 2011 was placed over my front teeth. I also had a partial denture in the upper gums and one on the lower gums.

Sometimes, in the past 5 years,  a “new to me” dentist would proclaim that I was not cleaning well-enough behind the bridge and candida was forming. I followed instructions, I bought products to help, I swallowed more fungalin than anyone needs to…and I had a biopsy on a white spot at the top of my mouth between upper gum and lip. Nothing but more candida was the response. Oh. the stuff I used….and still nothing really got better until late 2016 into 2017..read here for the details.

The people who are so kind and helpful to me at my local here, and oh so relevant Dental Surgery are the ones who understood my anxiety re travel to their surgeries, “got it” when I had to cancel at the last moment (IBS) and were just the best when it came to me having my HUGE challenge of all the top teeth & bridge removed in April 2017 BUT were “there” for me from the receptionist to the dental nurse to the dentist. It has been on of my life’s real blessings to find them. Here I am in June when I had a check-up.

Moving On…in more ways than one!

To have my cancer removed from my gums, allowing for margins, I had the ultimate extractions on 6 July 2017…my whole upper mouth! But, of course, the wonderful professional team I have, knew just how to replace what had gone. Use my leg! Good old right hand side leg had better blood supply so, it would be the agreeable donor of a fibula, some flesh and skin. OH alright then!

In recovery time: both in hospital and at home, learning to walk somewhat well with a boot protecting a very big and fleshy wound was hard. I had some physio & head & neck cancer nurse advice from Chris O’Brien Lifehouse before coming home. I had/have a very good GP and of course my husband on 24 hour call who knew I could walk and wanted me to be as independent as I could. Photos are of late July – 2+ weeks since surgery.

I also had (and still do) a very helpful and caring professional …my podiatrist Sean. He came to the house to give my nails some care and to check out what had happened. He keeps on eye on my gait as my walk is OK but sometimes I can feel like I might fall when I pivot. Memo to me: think before pivotting! Here’s where he works. 

One year on…thank you to Sean ( a new Dad now!)

How Do YOU Thank Someone Who Told You “You have cancer?”

In person, with cake. Yes, that IS my modus operandi. I come with little home-made cakes and a home-made card of appreciation. The moment I heard I had cancer held my attention  for a long while and will never leave me. However, even on the phone, from Wagga in NSW south west region, my Oral Surgeon, who had done my second biopsy in 12 May 2017, told me with care, compassion and a practical message!

She told me that she would be referring me to a Dr Clark in Sydney. I had no idea who or where but I took down the details then rang her surgery at Ourimbah  where I had my biopsy. Stef Calladine works in various places in N.S.W. and I am impressed by her work and her patient relationship. When I called the surgery, the lovely ladies there knew and helped me as much as they could, with a name (Dr Jonathan Clark), the place (Chris O’Brien Lifehouse in Sydney) and a phone number. More of the story itself is in the post above.

It was a couple of weeks ago I finally locked in a day when Stef was in and I could go to Ourimbah and what a delightful reunion it was. She has been following my progress professionally with follow-up letters and reports after surgery. I also got to ask the mystery (to me) question. How did Stef, someone who had trained and worked in the UK till a few years back, know to send me to Professor Jonathan Clark at Chris O’Brien Lifehouse? She didn’t but her nurse, Cathy, did! Oh thank YOU Cathy! That was the best decision.

About THE Teeth…when??

It is not a $64 thousand dollar question but I do want an answer of course. From the work done by my amazing and caring prosthodontist and the prosthesis makers at Westmead here I am getting the idea I “may” have something like a set of top dentures added to the upper gum by the end of August. I have to add I am a bit nervous. Gosh, people, I have not had upper teeth for a LONG time. Here’s a series of pics to remind my readers of how much work goes in to seeing I eventually get a smile with teeth!

Is this nearly the end? No. Sorry.

I have no idea of the end…of the treatments and the addition of teeth. I know I have weekly appointments till the end of August. I know this is the start of helping me get teeth inside my mouth again. I will be given very explicit care instructions as this prosthesis will be screwed in so cleaning will, at the least, be challenging. I will be guided by my professional team about the progress. I have no follow-up cancer appointment at Chris O’Brien Lifehouse at this stage. I do believe the little ‘hole’ that appeared under my nose post stent re-insertion  in late May has closed over by itself. Phew. Or that would have meant a fifth surgery.

My prosthodontist talks to my Head and Neck surgeon often as they perform other cancer procedures. I also keep in touch from time to time with an email…and yes, they do know about my blog.

I was pleased to meet people from the local Head and Neck cancer support group recently and join a very active Head and Neck cancer Facebook group too.

 

There is more than one Head and Neck cancer…there are many. Mine was contained in the mouth, not spread and was not HPV. I say I am fortunate. I say that a lot.

Wishing you all the very best who read this.

It’s Dental Health Week here in Australia! Do take care of your teeth and mouth. Only 13% of Australians regularly see a dentist. I am one of those…and yes I had cancer detected but that IS not the norm! Just take heed & have a look here.

Thank you!

Denyse.

P.S. I have an update: Monday 6 August my prosthodontist took the stent out from my upper gums and fitted the wax model of my “teeth to be”. He was very pleased with the fit (all his work, over the weeks of my visits and his knowledge and skills) and we both smiled broadly at the result. In 2 weeks it is planned to fit the FIRST version of false teeth (prosthesis) in my upper gums. But on Monday it was the sweetest surprise for us all:

 

On Tuesday this posts links with Kylie here

On Wednesday this post links with Sue and Leanne here

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest