Tuesday 28th June 2022

Confidence & Why I Need It. 29/2022.

Confidence & Why I Need It. 29/2022.

Quite some time ago, in late 2017 and into 2018,  I was recovering from a very invasive and nasty cancer which resulted in all of my upper mouth being removed (to make sure the cancer in both the jaw, gums and under top lip was gone…and it is!) and I needed to make myself a routine of sorts once I was back into more independent living.

From May 2017 until around late October that year I was fully present …in learning how to eat, drink and speak following my oral cancer diagnosis and treatments of surgeries, AND to be able to ensure I was OK to be well and truly independent outside the house.

I was so ready for this but in October, after seeing some posts relating to Outfit of the Day and Dressing With Purpose, I decided to adopt those plans and incorporate them into my day:

  • Get Up, Make Bed & Have Breakfast
  • Take some time to enjoy social media and blog and chat with my husband
  • Plan to go out somewhere for a coffee each day
  • Use this to Dress With Purpose
  • And show my self to the world via Instagram…..

I admit, it was so helpful for my mental health, and as the skinniest* I had been since early 20s, I did enjoy finally being confident enough to buy good fitting underwear and clothes for this new-to-me body.

The very first outfit shot. Off to hairdresser’s.

I use this term* with slight reluctance as I hate being defined by weight..life history is part of this. My need to show my body to the world had two motivations back then…1. I was going OK and 2. I could dress with some confidence again and took pride to be able to do so.

Now, as I write in May 2022, I see I looked ok but also getting well was a hard lot of work that I needed to let my body do.

What Happened Next.

Into 2019 I decided to stop the regular posts.

I think it was about not flooding the instagram account with same old same old…but now I think about it, I also was having some negative thoughts coming back into my inner life. 

Ones like:

  • Oh you can tell you have put on some weight
  • Are you sure you look OK…
  • I wouldn’t be sharing these as much as you will be noticed for negative reasons….

The Why and The What of 2020 into 2021.

Covid happened.

I got to have some surgeries…not cancer related and they had some challenges for me personally as recovery from the major abdominal one was complicated. I had some negative feelings about my appearance. That I was getting too fat and I became hooked on this negative thought.

Sigh.

I found my view was skewed. I had certainly added kilograms to my face and frame from those very early post cancer surgery days. Not eating much because you can’t will do that…. But I also knew that with some covid times, I ate more for comfort.

What did I do? I actually cut back some of the amounts of food without sacrificing nutrition or treats because I do not do deprivation! And over a few months a few extra covid kilos were shed and I was back to my days of 2018-19 weight wise. So, go me. And I am not scale dependent any more on how I feel about myself.

It was hard though to have reasons to dress with purpose during lockdown and then afterwards but just recently, with more confidence mustered I wrote this on facebook and instagram and received kind and positive responses.

My Facebook & Instagram Post. 1 May 2022.

Amazing what some confidence returning will do for a person.

I’ve been less than confident about my ‘appearance’ most of my life. But when my oral cancer diagnosis happened, and then surgeries x 4, I made myself #dresswithpurpose #takedailyphoto and get out into the ‘world’ for a walk, a catch up, a coffee and it didn’t matter that I had no upper teeth till August 2018.

I lost some confidence to continue this practice consistently thinking it had served its purpose for me: – letting people know I was doing OK – getting out and about – enjoying wearing ‘new for me’ clothes and styles.

Then came 2020 and into 2021 and now, we are one third of way into 2022. I needed to remember how confident it helped me feel in my “less than wonderful” days following surgeries and treatments, to dress well…and have a photo and go out.

Now, I have re-started it. Coming up to 5 years since my diagnosis on 17 May 2022 and I am using this month to celebrate my life, my changes and my health.

I am very grateful. Always.

Now I am putting me, the 72 year old version, out there again. And quite enjoying it. Even for a morning doing mundane things, it helps for me anyway, to look OK. Thanks for your support too friends and family. Always appreciated. The photographer is B who is not on FB. When I smile, it’s at him! That is LOVE!!

Why I Need Confidence Now.

I won’t be believing those intrusive and untrue thoughts any more

As an older woman I will continue to champion myself as I age.

I will, from time to time, add posts of my daily outfits on social media.

My budget may be tiny but I have a sense of colour and style so I will do well at making some good combinations.

I will remember this time in my life and appreciate that I can make changes for good.

Now, do you have confidence about your appearance?

Do you like to dress with purpose?

I am very interested in your comments!

Denyse.

Joining in with Natalie for Weekend Coffee Share later this week.

Thank you Natalie.

https://natalietheexplorer.home.blog/

 

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest

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

Two Steps Forward. One Step Back. My Cancer Recovery Update. 2018.126.

I am dedicating this post to the memory of a lovely woman whose life was cut too short by cancer. Chelsea, my friend Leanne’s step-daughter lived life to the max. Cancer may have been ‘in her’ but cancer did not take her spirit nor her love of life…and for her family including her husband and your daughter. My shared experience with Chelsea was that we were both patients of Chris O’Brien Lifehouse and because of that connection I wrote one of the Letters to Chelsea Leanne mentions on her blog.

Thank you for sharing the love and the life of Chelsea dear Leanne.

 

Two Steps Forward. One Step Back. My Cancer Recovery Update. 2018.126.

Update to update: even though I have outlined what was disappointing to me in this post which was an event from last weekend it has also taught me more about my capabilities in eating than I knew. I like many had tended to think eating with new teeth in my gums would be ‘back to what it was’. Not so, and I am now being more realistic and flexible.

Yesterday, 30 November, I turned 69. I had a wonderful and low key birthday celebration at a morning tea for two with my dear husband. We chatted, ate well, had our favourite drinks – small latte with an extra shot for me and English breakfast tea for him. Afterwards we wandered through the grounds of this lovely nursery, bought a plant each and came home to a relaxing afternoon spent at home. It really was just as I would have liked.

Except for this:

  • it has taken me sometime to adapt to some extra teeth added to my own on the lower jaw and I am very conscious of how much ‘saliva’ escapes and am constantly wiping – especially if I am talking…and drinking/eating. But with my husband or by myself I just get on with the ‘tidying up’ and enjoy what I can
  • I know my upper lip is shrinking in. I accept that. But, did you know you cannot ‘blow out the candle on your cake’ unless you get much closer…and I also cannot drink with a straw as there is no vacuum made in my mouth
  • I have a small but significant pain area in my….index left hand finger…the dominant one..the one where I write, draw and play. I have had pain in the tip of it before, as there is significant arthritis in the joint below. But not as bad as this. Our G.P. could not see anything affecting it from the outside, so he advised anti-inflammatories for a few days.
  • both of the above are so small, in the overall scheme of things I know, but I am writing about them (not using the left index finger!) because they have both given me cause for concern today especially.

Out Socially for Lunch.

  • Last Monday I had lunch at Chris O’Brien Lifehouse and was asked what I could eat. I nominated a simple cheese white bread sandwich and a lemon slice I had tried there before. Whilst I did not eat more than half of the cheese sandwich, I managed and did not feel as self-conscious as I thought. I also took my leftovers home! Win.
  • Today, I ventured to a local large club for a Christmas lunch get-t0gether with the Head and Neck Cancer group I am in. It was the first time I have gone out for anything other than coffee and cake. I gave it my best shot. It is a very friendly group and I did get to know people more today in this social setting.
  • What I found though was a reality check for me about my current status in recovery as a Head and Neck cancer patient.
  • Knowing I ‘could’ have taken the easy way out and ordered a safe coffee and cake that I knew I could handle, I decided to join in and actually have lunch! Remember I have only ever eaten a meal at home for over 2 years.
  • At the ordering desk, I asked for a small meal: I could see a baked dinner was on offer and was pretty sure I could manage some meat, potatoes, pumpkin and grave. “No”. Sorry,  we do not do small meals on Saturdays. “Can I have just one slice of meat with a couple of the vegies?” “No”. No offer of a kids’ meal (I think they would have refused that too) so I asked could I have just the potato and pumpkin and gravy. “Yes”.
  • OK. I thought, well this is a lesson. Not everyone ‘gets what they think they can’ and also maybe this establishment does not cater for people with different needs. And, I stayed quiet about it. I was a guest. Everyone else at the table was either way down the cancer recovery trail than me or could find foods to suit them.
  • I could eat one half of each vegetable and then as it takes me a while, it got cold. I had leftovers and asked if I could take them home. “No”.
  • I went and got a coffee later, no cake, chatted some more then drove home and ate….some lunch.

Why Write This?

  • It helps me to process it and maybe others who know what I am talking about can understand
  • The fact that I may have given myself something creative to do over the past 3 days as I needed to has not helped my mood much. I really miss using my finger.
  • I am hopeful, that by being patient and having the meds it will come good. Or I will go back to the G.P.
  • I am concerned I over-expect of myself, so writing this is helping me process
  • Maybe I just needed to ‘get it off my chest’ as they say!
  • It is not a post where I am wanting any sympathy but I did get insight into a world out there today that, in some respects, has no flexibility to meet special needs
  • I also know people face this as a challenge every.single.day
  • I am wondering if my ‘reaction’ was a bit of an over-reaction to a day which I had wanted to go well, and in terms of socialisation it did.
  • But it came up short for me, the head and neck cancer patient getting used to eating again in a regular environment, and so I wonder if I need to be more prepared for the situations I place myself in as I change from ‘no eating’ to ‘limited eating’ to ‘regular eating’.

It feels like two steps forward and one step back….but probably it is more like five steps forward and maybe one step back!

And maybe I will take a little container of my own next time for left-overs!

Thanks for reading!!

Denyse.

P.S. It IS most unusual for me to post on a weekend but for my emotional health I am…and I already feel better for writing it out. THIS is why I blog!!

Linking up with Leanne here for Lovin’ Life on Thursday…sending love to Leanne and her family. xx

 

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest

November Notes #5. 2018.125.

November Notes #5. 2018.125.

I went to a million (give or take) in-service courses as a teacher/principal.

I think they are called “professional learning” now and I also know they “count” towards accreditation each year.

I also devised and delivered many as both a teacher and University tutor and Adult Educator.

So what is this about in relation to my final November notes?

It’s how my personal development was & is enhanced by having cancer.

I am aware I have written at some length about the processes I have learned behaviour-wise and they are here, on the page “Denyse and Her Cancer Story”.

What I will do now is write about my changes in behaviour and attitude and how this can be linked to my cancer diagnosis. To make it easier and for me to see the changes, it will be in photos.

  • I gained independence
  • I became much less anxious and fearful following my diagnosis and subsequent BIG surgery
  • I tried new things with greater ease than ever before
  • I knew that to follow the processes and trust in the professionals, I would be OK.
  • I sometimes had to challenge the negative voice inside that wanted it all “done and now”
  • I found calm in more ways than I realised: particularly by going outside, into nature and doing art.

And then more:

  • As I already knew from the experiences of ‘exposure therapy’ the more I did the more I could do with increased confidence
  • Things do not occur linearly nor with ease and of course there were (still are at times) so tears that spill over and some worries
  • What is different now is how quickly I recover and re-group
  • It feels so much better for me to be a calmer person who is less afraid to travel, meet up with friends old and new and see greater times ahead
  • I can also put the “cancer voice” back in its box with relative ease by using my thinking strategies well.
  • I no longer try to ‘case manage’ anyone else’s behaviour.
  • I accept with great assurance that not only am I doing the best I can, so are most people
  • I am much more likely now to reach out a hand in friendship and care rather than recoil because of the anxiety and fear based on social engagements and effects of IBS.

And this is why and how having cancer helped me grow. It is a learning process of course. However, I am loving how my life is now and what I have gained back from this past 18 months living with a cancer diagnosis.

There is such a phenomenon called Post-Traumatic Growth. Article can be found here.

This resonates with me:

Types of personal growth

People may experience different types of change while coping with cancer, including:

  • Improved relations with others. Living with cancer may increase feelings of closeness or intimacy with family or friends. It may make it easier to connect with others who have had a traumatic event.
  • New life experiences. Having cancer may change your priorities, causing you to make different life choices. You may be motivated to make a career change, overcome a fear, or fulfil a life goal.
  • A greater appreciation for life. A cancer survivor may have an increased regard for life’s value or a new sense of vulnerability to death. This awareness may help you appreciate the world in new ways.
  • A sense of personal strength. Living with cancer can help you develop increased mental strength and a sense of empowerment. You can be proud of what you have accomplished.
  • Spiritual development. Some people living with cancer find they gain an increased interest in practicing religion or adding spiritual depth to their daily lives.

Having post-traumatic growth does not mean that you have completely overcome the stress and other feelings about having cancer. Growth and suffering can happen at the same time. In fact, most people who report post-traumatic growth also report having struggles. A person may grow in one area of their life and not another, or in a number of areas at different times.

I have been incredibly fortunate of course to have the surgeries and treatments and I never downplay cancer but as an educator I know what it has taught me and continues to teach me.

Have you had experiences that have changed part of your life and your outlook?

Please share!

Denyse.

Joining in with Leanne for Lovin Life linky here.

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest