Thursday 1st October 2020

Head & Neck Cancer Challenges: FOOD! 31/51#LifeThisWeek. 62/2020.

Head & Neck Cancer Challenges: FOOD! 31/51#LifeThisWeek. 62/2020.

Filming with Beyond Five For Nutritional Videos. See Below.

In the past two weeks for my #LifeThisWeek posts, Head and Neck Cancer has been the focus.

Regular readers know I have had head and neck cancer, and now, cancer-free (fingers crossed) I like to share stories and help others. It was World Head and Neck Cancer Day 2020 last Monday and I wrote about this here. The Monday before, it was an update on head and neck cancer, here.

You know, I hope my readers are never tired/bored of this awful cancer being shared…because it is, sadly, a growing one here and around the world, and many of you have left me know, that if it wasn’t for my posts, you too would not have known.

FOOD!

Love it.

Right?

Of course.

Once I was diagnosed with head and neck cancer back in May 2017 and found out I was having radical and reconstructive surgery to remove HALF of my MOUTH…my inner thoughts were: “how can I eat?” Not well. Not right away and for me, in fact for the 14 months after July 2017 a very challenging way of keeping myself nourished…and perhaps even emotionally sustained by food followed.

Here are posts where I went into more detail…and some images I share. From then.

Eating After Gum Surgery Part One.

Eating After Gum Surgery Part Two.

 

Eating with No Teeth Head & Neck Cancer

 

My First Year With Teeth

 

FOOD as Nutrition. It Heals and Sustains Head and Neck Cancer Patients.

I have had an interesting relationship with food to be honest. However, I will just say, I did eat reasonably well, but I also used food to comfort and be ‘kind’ to myself. Ring any bells for you?

That aside, going into Chris O’Brien Lifehouse on 6th July 2017 to know my mouth and ability to eat/feed/nourish myself was changing forever. In the first couple of days post big surgery I was in ICU and I recall the person I now know as Jacqueline – Dietitian come by and then, once I was in my room, she spent some more time with me as I moved through more of the (dreaded, shudder, feed via the naso-gastric tube…to W A T E R…oh happy day with me and the Speech Pathologist Emma.

Here’s the thing: Head and Neck cancer patients MUST maintain their weight. Stay well. Eat as well as they can. This ‘diet’ from the past Denyse found that hard initially. However, when I told my head and neck surgeon I had put on 5kg since getting my upper prosthesis 7 months early he said “GOOD”

Jacqueline did her best to educate me about keeping up high quality protein, even if it was via a commercial mix once I was home. I spoke to her of my treats (lemon syrup cupcakes) I had made and froze before surgery and she told me the words I loved hearing:

VALUE Add to foods. So, have your little cupcake warmed through and add full fat dairy topping: icecream custard, yoghurt whatever is your preference.

I admit I ended up working on how to feed myself food I thought a mouth with much added skin, stitches on top and 8 teeth on the bottom could manage. I am creative. I did come up with some good tasty foods. By the end of 14 months of having those foods, until I had some teeth added as a prosthesis, I admit, I did not want to eat any more like them. That’s for another day.

In 3 weeks time it will be 2 years since I have had upper teeth in the form of a prosthesis and that is amazing. I am also a Community Ambassador for Beyond Five, and earlier in 2020 I was invited to be interviewed about my eating with a head and neck cancer diagnosis and what I have learned.

 

 

https://f.io/F1Z5QQpT

The remainder of the videos can be found here on Beyond Five.

https://www.beyondfive.org.au/life-after-cancer/diet-and-nutrition/nutrition-videos

 

Thank you to all at Beyond Five and the former patients and carers I met as well as the Allied Health Professionals. It was something I was initially reluctant to do, and in the end “did it in one take and a thumbs up”.

Have you ever been filmed for viewing on TV or on-line?

Denyse.

Link Up #200

Life This Week. Link Up #200

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 optional prompt: 32/51 Why Did I? 10.8.2020

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World Head & Neck Cancer Day 2020. 29/51 #LifeThisWeek. 58/2020.

World Head & Neck Cancer Day 2020. 29/51 #LifeThisWeek. 58/2020.

World Head and Neck Cancer Day is coming soon. On Monday 27.7.2020.

In this week leading up to the day, I am sharing more about head and neck cancer.

From Beyond Five, this information:

There is currently NO screening test for Head and Neck Cancer.

 

What Are Some of the Symptoms?

Here is a link to the page on Beyond Five to share more on symptoms.

*sore tongue, mouth ulcer(s), red or white patches in the mouth

*neck lump

*pain in the throat

*ear pain

*hoarse voice

*painful or difficulty in swallowing

*blocked nose on one side and/or bloody discharge

IF you have any ONE symptom for THREE weeks, seek medical advice.

 

How is head and neck cancer awareness and information shared?

In a world unaffected  by COVID-19, this coming week  would have been a time for gathering together for fundraising and awareness raising in our country, and nearby neighbours, New Zealand. Sadly, this is not possible in most cases.

Last year, we were able to do this to raise awareness at Central Coast Cancer Centre, Gosford Hospital.

We are moving toward the on-line spaces more, by necessity and now design and hope you can find some help, information and support there too.

On Sunday 26 July 2020, Beyond Five, where I am a Community Ambassador, is holding a Live Event. 1 p.m. AEST. The link to join in this great initiative is here. It’s one of teaching and sharing….soups and more and is hosted by fellow Ambassador Julie McCrossin AM, featuring these people, including South Australian HNC patient Yvonne McLaren and Founder of The Food Manifesto, to help others with eating issues following HNC and those with swallowing challenges. Check this out:

 

Why July is a strong memory for me.

July IS Head and Neck Cancer Awareness Month.

I did not know that nor anything about head and neck cancer till my diagnosis in May 2017. My memories are S T R O N G each July as it reminds me of what happened inside my mouth, outside on my leg and then more.

Just to recap…I share my memories of going into surgery. 6th July 2017.

 

In ICU: where I stayed for 3 nights after surgery on 6 July 2017.

  • July is my “big month” of memories….of going into Chris O’Brien Lifehouse at 6.00 a.m. on Thursday 6.7.2017 with my husband and then having been checked & readied for surgery & meeting the wonderful anaesthetist Murray who reassured Bernard he would be in contact with him throughout the long day ahead….I got to say goodbye and was eventually wheeled to theatreS!
  • Oh, your surgery I was told, requires 2 theatres because there is a team of around 24 for your very complex & long surgery. Close to 7.30 a.m. by the time I got inside..but wait, there is more..
  • Whilst getting my mind around that, and the fact that when I woke (fingers 🤞) I would have had half of my mouth removed….I recall one of the team, actually I think it was Murray bringing in the corrected surgical procedure (originally it was to be remove fibula and skin/flesh from left, but blood supply was found after CT to be better in right) for me to sign. ✔️
  • Murray & his assistant were incredibly busy readying my body for the big surgery by placing monitors and more on me and tapping into 3 parts of me to lay tubes (I don’t know the terms) in left ankle, left & right arms/hands. Why? I had to ask. “Well, Denyse, is one spot fails or we need to move to another, we are ready, we don’t have to muck around in theatre”…

Now, I have but one memory to recall….as I was wheeled into theatre, I glanced to the left where there were teams of people dressed in scrubs & I admit I was searching for a familiar face….and there he was, my prosthodontist from Westmead, looked up and across at me. This man was the one who would, as the day progressed, use all his measurements and findings from my visits in May to “take my fibula after removal” and add abutments to it and ready it for placement inside my mouth.

Well. The memories ended for me.

  • I am told my surgery needed that many people because one team was the one operation on my right leg to harvest the bone, skin and flesh to go inside my mouth.
  • My professor led the team working inside my mouth, and entering the neck area for adding the blood supply from my leg’s flesh into my mouth to form the roof of it. All of my upper mouth was removed…even the last of my natural teeth up there…all 3!
  • There were samples from my neck taken and sent to pathology during the surgery. All were OK so “only” surgery was within mouth and under the lip.
  • My husband told me he was contacted as promised through the day. The day that saw my surgeons and team work for 11 hours to give me the best chance possible to eat, drink, smile and speak again.

By around 8.30 p.m. I was in I.C.U. as I had been told would happen. My body felt different. My left leg was in something that kept moving to ensure circulation & my right was Ok but encased in bandages and drains were coming from large wound area where skin had been harvested. I had an oxygen mask on, a nasogastric tube was inserted and I was pretty sore but not in huge amounts of pain. I barely used the pain pump and by the next day they said, we will take it away. Fine. However, I remained tired. But very pleased to NOT have a tracheostomy ( told it might happen) and could utter a few words. I also was put on a nebuliser for a long time and had oxygen in my nose. The nurses checked me often for drains & radiographer with a portable X-ray machine came in to see nasogastric tube was in ok.

That was my 6 July 2017.

Blogging my Head and Neck Cancer from diagnosis onwards to help me put in down and to help others too. On my blog- denysewhelan.com.au Here is the link to all the head and neck cancer posts.

July 2018– I was about 6 weeks away from have my upper prosthesis put in. Before then, I had 3 other day surgeries to give my mouth some bulk & ability to have the prosthesis attached to the jaw made from my leg. Those surgeries were Nov 2017, Feb 2018, May 2018. Joining local Central Coast HNC support group.

July 2019– Going well. Regular check ups have been good & there is no cancer…found anywhere. May 2019 check. Helping raise awareness of Head & Neck Cancer as an Ambassador for Beyond Five.

July 2020– Continuing to do well. Before Covid restrictions I saw my Prosthodontist in February who said my prosthesis care is excellent and saw my head and neck cancer surgeon in March who said “see you in 6 months”…with a CT scan beforehand to ensure all OK…still.

This is why July means a lot to me…and I share the story of my HNC because it might be rare but there is a need to notice symptoms of HNC and the onus can often be on us, the patient. Beyond Five’s regular updates and professionally reviewed and verified information is my go-to site and that is why I recommend it and work as a volunteer.

 

From Beyond Five’s Website.

“Who Are We?”

There are many people who are part of the organisation called Beyond Five. Professionals in the field are prevalent. The professor I refer to as ‘my surgeon’ is the chairman and one of the founders. With Professor Jonathan Clark AM.

Nadia Rosin. A communications and project management professional with over 20 years of experience in health promotion. Since 2016 I have had the privilege of working with a passionate team of Head and Neck Cancer clinicians, patients, family members and carers to launch Beyond Five, the first Australian not-for-profit to provide education and support to people affected by Head and Neck Cancer.

Experienced in strategic planning and communications, stakeholder engagement, fundraising, project and operational management. I am passionate about collaborating with key stakeholders to provide evidence-based information and support to patients, carers and health care professionals, raising awareness of Head and Neck Cancer in Australia and advocating for Head and Neck Cancer to form part of the public sector funding and health policy agenda.

Julie McCrossin is a broadcaster and journalist. In 2013 she was treated for oropharyngeal cancer and is now one of Australia’s leading head and neck cancer advocates. Julie is Beyond Five’s inaugural Ambassador. Her story was featured here as a Woman of Courage recently.

Denyse Whelan is a retired K-6 NSW School Principal and has also taught English as a Second Language. Denyse was treated in Sydney for squamous cancer in her top gums in 2017 and is passionate about sharing her ‘new normal’ to help others.

Marty Doyle worked for 36 years in the media as a radio announcer and TV presenter and is now a personal and executive coach. In 2004 he was treated in Brisbane for metastatic squamous cell carcinoma with cancer of unknown primary and has been a passionate advocate for head and neck cancer ever since.

Meeting Marty Doyle – at HNC support group.

Mike George had a total laryngectomy in 2017. Mike is well known to the laryngectomy community in Victoria and is passionate about securing Heat and Moisture Exchanger (HME) funding across Australia and educating emergency services and medical professionals about how to resuscitate a laryngectomee in an emergency.

Mike shares his story here.

May you all stay well.

Denyse.

Link Up #198.

Life This Week. Link Up #198.

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 optional prompt: Share Your Snaps #6. 27.7.2020.

You are invited to the Inlinkz link party!

Click here to enter


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Update: Two Years Since My ‘Weight’ Post.122/2019.

Update:Two Years Since My ‘Weight’ Post.122/2019.

Looking back to the last post I wrote here for 2017 I decided it was time for an update.

Firstly, two years!!

Secondly: Am I brave enough to do this?

Y. E. S.

Some background information. I would urge you to read the post I wrote back in December 2017 as it was the most honest I have been publically about the challenges of being overweight, obese and all the years I did not speak of it.

Two years ago, I was the lightest I had been since…early my  20s (we are talking over 48 years ago).

I was that weight for a few reasons…the major one being oral cancer in my upper mouth requiring everything to be removed and a reconstruction process begun. My ability to eat was severely challenged.

At my ‘weightiest’ 2013, and ‘lowest’ November 2017.

But…from the image of me at my heaviest in 2013 I did start to lose some weight (not by dieting) but by a couple of years of anxiety and Irritable Bowel Syndrome (diarrheoa) from 2014 onwards.

In fact, without trying, as they say, it did come off. I admit, I could not eat much (without having to find a toilet very fast afterwards)….but, in 2015 into 2016 the weight loss whilst gradual did worry me but I was assured by my GP that it was OK. It was my body and the fact I could not eat much.

Interestingly, and I have only recently formed this view, I was on a long-term anti-depressant for at least 10 years before coming off it slowly probably in 2012 -2013 so I may never know if that too played a part in my body holding onto fat.

I also come from a family line of overweight people from both Mum’s and Dad’s relatives.

Why Am I Writing About This Now?

Well. The woman who always saw herself as F A T (and tried to L I K E herself too) is having to come to terms with:

  • how I am,
  • how I may proceed knowing weight has been an issue in my life for a L O N G time…
  • and to see if sharing my update helps not only me but others.

I am pretty sure THIS is a topic that is often OFF-LIMITS.

What’s Happened In The Two Years Since The Last Story?

  • I continue to be a work-in-progress as far as my relationship with my appearance is concerned.
  • I admit it is getting better as I compare the ‘health’ of me now, to the ‘ill-health’ of me as I was recovering from surgeries July 2017 until I got my upper prosthesis in August 2018.
  • I went up a size in some clothes in the past year. I also added around 6 kg in 12-15 months.
  • I refuse to get worn down by the weight I am story again so I am doing my best to look well and feel good too.
  • Since May 2019, the Apple Watch helps keep me honest with myself, via the daily steps and movements records. I do around 6000 most days, sometimes around 5, 500 and other days well into the 7000.
  • The thing is, even with the upper prosthesis, it is still a challenge to find foods that work for me outside the home. 
  • In this collage you will see a plate of baked vegetables. That was all I could see that was suitable on the menu at a local club at a Christmas lunch.
  • This time, when I attend, I am having cake and coffee…because I know I can eat that in public and I will not fill up and I can eat a better meal at home.
  • It really is trial and error. Sometimes the size of a meal stops me. This is OK at home as I can have the other half the next day. Many restaurants do not allow take home bags. I learned that I cannot rely on take-away or restaurant food when I had my first overnight stay in Sydney in June. It surprised me.
  • I want to remain well, comfortable and confident in myself which is why I continue some photos every few days/weeks.
  • These help me SEE that perhaps what I FEEL is wrong…as I often am surprised by my image.
  • I do admit now, that the photos I see of me post-cancer surgeries are not those of a healthy woman (albeit thinner than I had been for decades) so to want to be her again is not to be well.

More musings….

As I said above, I remain a work-in-progress. I was/can still be a comfort eater but this is what has changed.

  • I know about my cravings.
  • I know that cravings can go, given the chance, just like feelings change too.
  • I understand myself so much better now when I start thinking about food I might want because I ask myself “what is it that is troubling me?”

In the past, I would not have even gone that far. I would have scoffed the chips, bitten into the crunchy foods and allowed the smooth chocolate to melt in my mouth. I do not eat much at all like this any more. I do still eat something for texture or taste but my full limits have changed as has my mouth so far less is consumed.

Dealing with what is troubling me is the big shift.

  • I can speak to my husband about it,
  • write in my journal,
  • go outside,
  • blog,
  • do some art…
  • anything to change the situation and thoughts…and guess what happens most often..the craving has moved on.

This knowledge for me has been life-changing.

Here is where I learned about it and still continue to learn. Of course, my self-talk is probably one of my better teachers…as long as I remember the newer approaches..and yes, I mostly do. In fact, I even ask myself questions to check.

  • Is this what I really want now?
  • Am I actually needing to…(insert what I might do other than soothe with food.

I am glad I decided to write this up. I wasn’t sure. However honest me could not let the story of what’s happened just sit from where it was 2 years ago. An update was the way to go as so much has changed for me in terms of understanding my insides (brain) and the outsides (body) and the connections.

How about you?

How are you at understanding yourself in terms of appearance?

It’s a tricky thing. I get that too.

Denyse.

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

On Thursdays I link here for Lovin Life with Leanne and friends and on Fridays, it’s Open Slather here with Alicia.

This is the ‘last post’ on a Wednesday in 2019…and will be returning on 8 January 2020.. See you then. Happy Festive Season everyone:

Copyright © 2019 denysewhelan.com.au – All rights reserved.

 

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