Saturday 5th December 2020

My Head & Neck Cancer Story* Wrapped Up!** 95/2020.

My Head & Neck Cancer Story* Wrapped Up!** 95/2020.

Why the * and the ** Denyse?

Well, yes it’s a story* alright, this head and neck cancer of mine.

Mine was a version of Squamous Cell Carcinoma found in my upper gums and under top lip. However my head and neck surgeons were never quite sure of my SCC definitions as it was “very unusual” and “could have been…something …something”. Nevertheless, for ease of writing and for others who may read these posts, I refer to it as SCC of the upper gums and under the top lip or Oral Cancer. I keep it consistent for me and for readers who may have found me following a head and neck cancer diagnosis for them or a family member. This is why I keep a page here devoted to all the posts.

Now, about the wrapped up**

Considering that my head and neck surgeon said in September 2020, “see you in a year” and my prosthodontist said in October 2020, “see you in 6 months” there is not a lot I need to consider at all treatment and care wise.

I am in my 4th year since diagnosis and recoveries have been fine…even with a few setbacks so here I am.

In Collage Form: My Head & Neck Story Wrapped Up. As of November 2020.

First: Time span: July 2017 (first & major surgery) including 3 other surgeries and many, many visits to the prosthodontist to May 2018.

Second: Time span: June 2018 – December 2018. I had my upper prosthesis added on 21 August 2018. Smiling and eating felt so good!

Third: Using my upper prosthesis to eat took FAR longer than I expected. Nevertheless I remain very grateful and my smile tells the story.

Four: In early 2020 (the famous year of COVID!) my cataracts were removed from both eyes, no more glasses other than reading. I also had major bowel surgery. So happy to be WELL…after all that and to have found a hairdresser whose cutting of my hair is consistent and amazing.

That is it. For now. This year and beyond.

To all who have continued to cheer me on when I have been down and help me see how well I am doing….

             T H A N K    Y O U

and I am off to:

Denyse.

Joining here with Leanne and friends for Lovin’ Life linky on Thursdays.

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One Year Ago. Head & Neck Cancer. October 2019. 87/2020.

One Year Ago. Head & Neck Cancer. October 2019. 87/2020.

For the past two weeks, and now concluding this week, on a  Wednesday I am posting a ‘review’ blog post mostly to remind ME of how far I have come in terms of the changes brought about in my life thanks to the diagnosis of head and neck cancer on 17 May 2017. The whole story is here. 

Using some photos I am adding my memories from the time.

Here I go:

October 2019.

 

 

I was very well by this time one year ago. I did have a cancer check in September 2019 and all was good and I was told, see you in 6 months. That brought me to the early March 2020 appointment which was held in “just before COVID times locked down”.

 

 

I was getting myself ready to celebrate my 70th Birthday at the end of November 2019, and had a little look at young Denyse who began loving cake…waaaay back. Mum would have made this. She did not really enjoy eating sweet things but she knew how to bake them for the rest of us.

 

 

 

Just before October 2019 I found out about two other patients with head and neck cancers who also had the privilege of sharing the care and treatment of “my” Professor too. These people found me via formerly Beyond Five..now Head and Neck Cancer Australia, and then read my blog posts here. They reached out to me. One I got to meet in person. The other, another teacher, and I will catch up once we are on some kind of holidays at the same time. Head and Neck Cancer, is as I read recently a lonely disease. It is always good though to meet up with others who understand. The health professionals too as they get to see progress within us.

 

 

 

 

I did have a special and kind friend from my world of art die in early October 2019 and on the day of her funeral, I went to a favourite place of mine that she also loved me sharing, the ocean and thought of her and her family.

 

 

 

 

My gratitude for having an open space by the ocean is well-known. I have, since moving nearer the coast, found solace and a great sense of peace walking on the beach and in the water. The beach I loved doing this has, thanks to the ways of the ocean, become almost inaccessible to people who are older and with a compromised right leg (fibula-less) I won’t go there unless I can access it with ease.

 

I drove to Sydney’s Dee Why to visit Dad in his independent retirement unit in October. He must not have wanted a photo that day. Here I am before leaving home.

 

Later, I drove as I often do, past South Curl Curl beach and stopped to have a little walk. It was a magnificent day. And when I did see Dad in October 2020 he agreed to this photo! He turns 97 early next year.

 

What have I learned in doing this series?

That for me, things got better and better.

They also were very hard on some days to tolerate. Many of those days were long, boring, painful and challenging as so much depends on T I M E to heal.

Yes, that old adage is true…time heals all wounds.

So, as of NOW: October 2020, I am a very well person. Go me.

Actually, also ‘go my husband’ who has had to listen to ALLLL  of the stories from me.

On Saturday 17th October it was 50 years since we met. As this post goes live, we will have travelled to the north west of N.S.W. to the city of Tamworth where we met. We plan to have a couple of days going to towns that were of great significance in our early single, then married lives. There WILL be a post about that you can guarantee it. 

 

I have had a very challenging year in some respects in 2020 with – as for everyone:  COVID 19 and its various means of changing our lives….

  • specifically for me it has been a year of ‘getting more medical and surgical things’ done. I had to concentrate on head and neck cancer until late 2019 so in 2020 there are no more excuses.

 

  • In March 2020 I had both eyes cataracts removed and no longer need glasses for distance or driving. Still for reading but at a lower prescription and I need sunglasses out in the sun.

 

  • In July, and then into August 2020 I had a rectal prolapse surgery (planned) and hernia repair (unplanned). There was a wound healing complication after 5 weeks and I needed further surgery to debride the wound and then  T I M E and a VAC machine and wound changes till all finally healed by October 6. BEST news ever!

 

  • Well, there was more too! Early September, when I was still attached the the VAC machine, my husband drove me to my Cancer Check with my surgeon and nurse, and all was so darned good, I got the news that floored me…”see you in a year.” And….

 

  • On 15 October my prosthodontist checked out my upper prosthesis and declared I am maintaining the area very well indeed! I don’t need to return to see him till April 2021.

I love these images…me with my health professionals. I love that they agree to having their photos taken too.

Check Up with ColoRectal Surgeon

Head and Neck Cancer Surgeon & Me.

With My Prosthodontist

This is why I blog. It is so helpful to share with others and it is a great record for me and my progress.

Thank you for your interest, I appreciate it.

Denyse.

Joining Leanne and friends for Lovin Life Linky here. 

 

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Two Years Ago. Head & Neck Cancer. October 2018. 85/2020.

Two Years Ago. Head & Neck Cancer.  October 2018. 85/2020.

For this week, one week ago, and the next week on Wednesday I am posting a ‘review’ blog post mostly to remind ME of how far I have come in terms of the changes brought about in my life thanks to the diagnosis of head and neck cancer on 17 May 2017. The whole story is here. 

Using some photos I am adding my memories from the time.

Here I go:

October 2018.

 

Early October 2018 and I was off to Chris O’Brien Lifehouse with a LOT to smile about. I received the long-anticipated upper prosthesis of teeth on 21 August 2018 – some 14 months after surgery.

  • It was a cancer check day but also a chance to meet with Nadia from then Beyond Five – now Head & Neck Australia to discuss my prospective Ambassadorship as a volunteer.
  • Photo – top left. Then briefly caught up with then then Specialist Head and Neck Cancer Nurse (top right)  who had last seen me as a very raw new-to-head and neck cancer patient in July 2017. She was stoked! My cancer check went very well indeed (bottom left) with smiles and congratulations all-round.
  • How good it must be for the Professor (Jonathan Clark AM) and his Nurse Surgical Assistant and Consultant (Cate) to see a patient post surgeries…yes, all 4 they were part of…and my much anticipated S M I L E.
  • Last photo is me with Gail O’Brien, the late Professor Chris O’Brien’s wife whose vision it was to have this wonderful comprehensive cancer centre built and to tell her how much I appreciated the work and vision of her late husband…he was a head and neck surgeon too and my surgeon trained with him.

 

 

School holidays in October 2018 saw two visits from our Sydney-based family.

  • Much appreciated as always.
  • We entertain casually for lunch with their favourite snacks and foods and much chatter is heard.
  • Often we go outside for a play even though our yard is very small.
  • On this occasion the four younger kids (left pic) took home a special pot with some items planted and some crystals along with a few old fave toys from our Sydney house…and their younger days.
  • With the older group there is often some reminiscing and music too, particularly as the older grandson is a DJ.
  • I felt so much more at ease now I had the teeth in my mouth. It still took quite a bit of getting used to for eating but it was much better than before!

 

 

I was interested in attending a Look Good Feel Better Cancer Patient Workshop and once my ‘teeth’ were in I happily took part in a local event.

  • I did get some good advice and took away a swag of amazing free products.
  • What left me feeling somewhat disappointed was the fact that my cancer is so rare and not known.
  • These workshops were pitched at breast cancer patients more than anyone.
  • Some needed help with using wigs and scarves, others with how chemotherapy had changed their skin/hair.
  • I guess I need(ed) to be more grateful because I was/am doing well.
  • I wonder as I write this if these activities have now been stopped because of COVID and that is a shame because it was psychologically very helpful to us to be ‘seen as a woman, not a patient.’

 

 

It was, and still is, important for my mental health to have something creative to do most days.

  • I liked the idea of holding a mindfulness colouring class at the local library. I did get to have it, but it took so much box-ticking, I left it as a one-off.
  • However, I know I enjoyed being ‘teacher’ again.
  • My months of making bookmarks for the charity The Big Hug Box were always enjoyable and I must have contributed well over 500.
  • They were individually constructed by me and sent in batches to Lisa for adding to the boxes.
  • In November 2018 I took part in a packing boxes day at her house and met other cancer patients.
  • One got me to design some mandalas for a colouring-card idea she had. I was pleased to share my creations.

 

 

 

About eating. And drinking. I remember pre-upper prosthesis having all kinds of thoughts about what foods I might try with teeth in my top gums.

  1. I admit now, 2 years on, that some of those foods were just not a success.
  2. You see, as it was explained to me by my lovely Nurse, Cate, my mouth has more inside it than a ‘normal mouth’ and it cannot do all that it did.
  3. My prosthodontist had added a partial denture of a tooth on each side to hook into my remaining natural teeth on the bottom and this helps hugely.
  4. Some meals I tried and could eat (and still do) are  above, even though the hot meals are likely to be over 2 nights.

 

 

Keeping up appearances…was very important.

  • This trend went right into 2019.
  • In 2020 I do this occasionally.
  • But in between treatments, visits to Sydney for cancer checks and more, dressing well and with purpose was/is very important.
  • More important than everything was I was finally able to (and definitely wanting to) meet up with friends again. Yay.

There it is. Snapshots to help me remember what life as a head and neck cancer patient was like in October 2018.

Denyse.

Linking up with Leanne (whose image appears in this post!)  here for Lovin Life Linky.

 

 

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Three Years Ago. Head & Neck Cancer. October 2017. 83/2020.

Three Years Ago. Head & Neck Cancer. October 2017. 83/2020.

For this week and the next 2 weeks each Wednesday I am posting a ‘review’ blog post mostly to remind ME of how far I have come in terms of the changes brought about in my life thanks to the diagnosis of head and neck cancer on 17 May 2017. The whole story is here. 

Using some photos I am adding my memories from the time.

Here I go:

October 2017.

 

The way in which I recorded the times. My husband kindly took photos of me outside Chris O’Brien Lifehouse on the afternoon of our visit as a check-up in October 2017. It was the first time I had seen my head and neck surgeon since leaving hospital in July after the first major cancer removal and mouth reconstruction. Of course I brought cake! Cake is my appreciation gift to my medical and surgical professionals. What I see in ‘me’ is the way it was then. I had no way to smile and it was probably because of seeing photos like this that I finally went and brought properly fitted bras. Sigh. The photo of the drive back home over the Harbour Bridge is a great memory. One of relief too. However, glad I have this as we can no longer use iphones in cars without risk of huge fine.

 

 

 

Seriously I was gob-smacked at this image. WOW. My fibula, the shapes at the top, cut into 3 pieces and made into my new jaw by being attached with screws to under my cheekbone. The little dot-type images: one at the front, two on each side, five in all, are where the screws are embedded into my new jaw and which will, over time, hold the upper prosthesis I have now in place. This was so good to see however, as it showed just how clever my team is!

 

 

 

The first time I ventured down the M1 alone that October was for a very good reason. To meet up with my daughter and her two eldest daughters for morning tea at Hornsby Berkelouws. It is a favourite place to meet because it’s about an hour from our place and reasonably convenient for those who live in Sydney to meet up. I was still very new to what I might eat/drink but I managed a piccolo and a very small cake with icing. Lovely as always to see the family. I admit I was tired out. Pretty big deal only two + months since my big surgery.

 

 

 

Our daughter. Very proud of her. This lemon meringue pie – a firm family favourite – made ‘just for her’….to celebrate her completion of her Master of Education Teacher Librarianship. It’s pretty tough being a single mum to 4 and working generally full-time as a teacher and then teacher-librarian too. Not only that, she started a new school’s library. One book at a time. Many hundreds of times. Eventually to complete the last semester of the pretty gruelling regime to do a Masters on-line (and to keep her job) she took long service leave and “got the job done.” She and the four kids (3 are adults) joined her in the celebration of her achievement at Charles Sturt University Graduation Ceremony later in 2017.

 

 

 

In late October I decided I needed a ‘challenge’. A personal one. It seemed that I wanted to show off this new-to-me slimmer body and the enjoyment I was beginning to find in looking for clothes that actually fitted me. Of course, my weight loss was because 1. cancer and 2. I couldn’t eat properly but I was also not allowed to lose any more weight by my professional team. This instagram challenge took on a life of its own and over time I did this every.day. for many, many days as it helped me emotionally to see my improved look and demeanour despite the ravages of how my mouth had been reconstructed using part of my leg.

 

Glad to have shared this. I know long time readers may recall some of these images. Thanks for reading and commenting.

 

Denyse.

Joining Leanne and friends for Lovin Life Linky here. 

Joining here too: Esme’s Senior Salon link up.

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Healthy. 39/51. #LifeThisWeek. 78/2020.

Healthy. 39/51. #LifeThisWeek. 78/2020.

When I was blogging more frequently, health and mindfulness were a category for blog posts. These days, like many, my posts are limited to twice a week.

This is good for my health in some ways as I am not feeling too much pressure to perform, aka write posts, and can enjoy the writing of the two I do more.

About Me.

  • Being healthy is a relatively new idea for me…I was raised to be healthy and was…I am talking about lifestyle & choices
  • For many years I balanced my life …in a not so good way…with eating for comfort and doing less as I was quite worn out by life
  • I knew limited ways in which to care for myself because…as many do…I was too busy caring for others: at work, and in my family life.
  • I do much much better now in the self-care and health stakes as I have learned much in my years living following head and neck cancer.

Then I Was Diagnosed With Cancer.

Those who have followed me before and since this diagnosis know that I found out I had a head and neck cancer, specifically squamous cell carcinoma of the top gums (maxilla) and under the top lip. All about that, and many more posts outlining the years of surgeries and more are here: Head and Neck Cancer.

But Before Then.

My emotional health was at an all time low from 2013 into early 2017 for a number of reasons:

  • ageing and becoming somewhat disenchanted by some of its effects
  • retirement from all of my meaningful and paid work over this time
  • my weight was the highest it had been and with encouragement from my GP and my own determination, I lost some kilos over a year with greater awareness of why I ate, and ensuring I moved more
  • finishing up grandparent care at our house and actually being glad because I was finally tiring and becoming worn out by it
  • making a move from all I knew: Sydney, our family, friends….to the Central Coast
  • this move was one I thought I wanted (and still agree it was the right move) but my emotional health brought me down into spirals of anxiety and fear along with the dreaded Irritable Bowel Syndrome
  • the health professionals I saw then all said it was reactive depression and anxiety was part of the transitioning. Not a diagnosis of either. I do take a low dose anti-depressant now to help with IBS more than anything and getting off to sleep
  • I admit I am one of what is known as the “worried well”.

SO….in some ways I was not surprised that I had cancer diagnosed in May 2017 …I can see that others may have felt stress was a cause. That it is not a direct link, but from what I know about cancer, it is random.  Some people thought my immune system was down due to the appearance of my mouth. THAT,  was actually the beginning of cancer…but no-one thought that till April 2017 when I insister my dentist remove the bridge from my upper gums.

This quote sums cancer up. From an Australian surgeon:

Head and Neck Cancer Requires Frequent Checks.

From the diagnosis on May 18 2017, to the big reconstruction surgery on July 6 2017, through to further surgeries for skin grafts and checking inside my mouth, glands in neck area and many visits to the prosthodontist, I had:

  • post-surgery checks after a few days to a few weeks to see my head and neck surgeon and his surgical assistant, nurse specialist
  • three monthly checks for the first year
  • any time where I may have seen/felt an issue, such as additional skin forming, and my surgeon saw me within weeks
  • four monthly checks for the next year
  • weekly and fortnightly visits to the prosthodontist as he continued to work on the making of the upper prosthesis
  • then monthly to two monthly visits to him, until COVID. Last time I saw him was February 2020 and I am returning in mid October as he is now doing regular checks again
  • this year, the visits to Sydney’s Chris O’Brien Lifehouse were at 6 month intervals.
  • THEN, at my recent early September visit, after clear CT scans of my head, neck and chest, and after visual examination and more, I am now on:
  • a 12 month check up..so will not be back until September 2021.

“MY” Prof…as I call him, Professor Jonathan Clark AM recently became chair of a new program at Chris O’Brien Lifehouse and Sydney University where this grant will enable him and his team create software and 3D models for head and neck surgery on the spot. My surgery, over 3 years ago, meant a delay as my team here in Australia  and the software developers in Europe made the program for my surgery and the model for my  mouth which had to be flown in from Belgium. Here’s the announcement of the donation for the funding so this program goes ahead.

ALWAYS happy to have a photo….

How I Manage My Health Now.

Interestingly with greater ease, thanks to a limited ability to eat a lot and to a better attitude to moving more.

Photos tell that story too. It is a way of keeping myself accountable too.

However, I never feel that I am missing out either. I have a better understanding of my need to nourish this body and to also enjoy the treats when I can.

And Then I Had to Do These Things.

Have both of my eyes’ cataracts removed and lens replaced. This happened on the cusp of COVID restrictions and I was glad to be done. In Sydney, over 3 days. Then of course, I had recovery but my opthalmologist has rooms up here so visits for checks were OK. I was quite shocked that from one annual visit to the next, it was cataracts time. This turning 70 was not quite what I thought. Now 6 months on, I use readers of a lower strength and no glasses for driving. Love the clearer views everywhere.

Left Eye Cataract Done

After hiding FROM myself and my problems with rectal prolapse* and the ways in which it impacted my day to day life, in May 2020, I was forced to face the matter as I could no longer live in pretend land. I look at it this way though, in managing my recoveries – physical and emotional – from those years of head and neck cancer I could not face more investigations into what is wrong. But dear readers, there was a lot wrong. Google rectal prolapse and what it means. Let’s just say, I paid a small fortune for incontinence aids, and suffered a great deal from shame about this condition.

Grateful to be ‘out of’ another surgery.

Getting One of the Things* Above Fixed…and Added Complications. 

Again COVID changed a few things but from my GP’s referral to a colorectal surgeon who insisted on a colonoscopy “no cancer or polyps but def need rectal prolapse repair”…and then needed surgery I became resigned to what needed to be done. From early May to late July I waited for the  surgery called rectopexi. The surgeon did a great job, especially complicated by my inners where he also found (surprise) a hernia needing repair. This necessitated a horizontal incision AND, the best (not) news, a vertical incision. Meeting in an upside down T at the bottom of my abdomen. The surgery, has worked. He took the slack inner workings of my rectum and has stitched them to a bone low in my back. I have no prolapse and normal (for me) bowel movements for the….first time in perhaps a decade…and…

My recovery in hospital and at home was slow as expected but at my first post-op appointment he told me I was a star for recovering in exactly the way it was best. I liked that. Especially as I did not quite hit it off with him at my initial consult…I was scared.

Three weeks into post-surgery recovery I noticed a section of the upside T section of the wound was kind of not staying together. I showed my GP and he thought it would be OK. But take this anti-biotic and apply this cream…and let’s hope it resolves.

It did not.

Within 2 weeks of seeing my GP, I was ‘astonished to see and feel liquid forming over my nightie as I got up out of my chair. Eeek. Got an urgent appointment to the GP, who was ‘so sorry, Denyse’ but…It was called wound dehiscence and sometimes a wound will not stay together. My colorectal surgeon saw me the next day, and pronounced “can fix, back into hospital for wound debridement and we will put a VAC system on to help heal the wound over less time.”

Wound Debridement and the VAC. 

One month post first surgery for rectopexi I was back in the same hospital and cared for very well. Surgery was less than an hour. I stayed overnight so the surgeon and wound nurse could see I understood how to live with the VAC system. The best part of having paid for our private health insurance since the late 1960s it means either of us can get the best care, when and where we can. I know this is a two-part health system in Australia but I am very grateful.

Each week I was visited two days a week by the Wound Nurse. This was all covered under ‘Hospital at Home” care from our Teachers Health Program. A machine was supplied, each of the changes of dressings and the costs of visits from the Wound Nurse. This lasted just over 3 weeks.

Since then, our GP and his practice nurse is taking care of my wound dressing. The progress is amazing on the wound. I have so many photos, none of which I will add here but they give me and my husband (the photographer) updates. The medical and surgical teams appreciate my dated photo collages.

Is that IT?

I don’t know but I sure would like to be free of appointments for  the above. This is likely to occur in the next two weeks or so. At least I have no VAC on me and have full independence.

I am back to my prosthodontist in October but I am pretty sure my mouth care will be praised.

Emotionally I am getting there. I know I have gained a great deal of resilience through much of these past 3+ years but am looking forward to a some respite from health professionals for a while,

THANK you…if you got this far.

I hope you are healthy and well.

Stay that way!

Denyse.

Link Up 208

Life This Week. Link Up #208

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. 40/51. 5 October 2020.

You are invited to the Inlinkz link party!

Click here to enter


 

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

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

A series of blog posts on Denyse Whelan Blogs to be found here from mid-May 2019: Wednesdays: each week until the series concludes in 2020.

Here is the introduction to the series.

Courage is strength in the face of pain or grief. It’s doing something that frightens you. We face situations that demand courage every day. These situations provide us with choices, and the way we respond to those choices determines our future. Dayne Shuda.

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

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

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

Thank you Yvonne for sharing.

 

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

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

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

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

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

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

 

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

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

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

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

How has it changed me?

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

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

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

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

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

 

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

 

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

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

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

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

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

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

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

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

 

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

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

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

 

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

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

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

 

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

 

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

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

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

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

 

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

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

 

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

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

Denyse.

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

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

Thank you.

Social Media Links for Yvonne:

Blog/Website:  www.thefoodmanifesto.com

Twitter: https://twitter.com/McclarenYvonne

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

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

 

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

Copyright © 2020 denysewhelan.com.au – All rights reserved.

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I Want. 33/51 #LifeThisWeek. 66/2020.

I Want. 33/51 #LifeThisWeek. 66/2020.

Last week I wrote this post: Why Did I Start A Blog?

Today I conclude the ‘Why I Blog” series with ‘I Want’ because that is essentially the ‘why’ of blogging for me.

I want:

  1. to connect with readers who visit this blog
  2. to stay relevant as a blogger 
  3. to post topics of interest with a range of my expertise and interest
  4. to contribute to conversations about a range of topics
  5. to be able to learn from others who blog
  6. to know that I am a blogger who is inclusive
  7. to be a blogging friend to those who link up often
  8. to see that my posts on all topics have relevance to my audience
  9. to visit others’ blogs and connect via commenting and support
  10. to continue writing, posting, commenting and sharing my blog posts with others for as long as my work is of interest to others and I am not feeling stale nor bored

It’s been a very big learning curve to be a blogger.

I say that because, for me, it was quite foreign to my world of work in education. Yet, as  determined person who does not eschew hard work, I did my best to blog for what I had found was my way:

Conversational

Informational – based on experience

Photo-centred

Stories shared

Difficult Topics Which May Be Helpful

Creativity and Art

Health & Mindfulness

After a huge move (literally) in our lives, from Sydney to the Central Coast at the beginning of 2015 I set myself a goal. To keep me focussed on “doing this one thing EVERY day”…. I wrote a blog post Every.Single.Day. of 2015. No-one read the posts bar me, until, I re-visited the best way to connect more broadly and that was:

L I N K  U P S.

Hosted by fellow bloggers.

Yay for that. I linked up posts for some time on the Annoyed Thyroid’s link up each weekend , Kylie Purtell’s on a Tuesday and Kirsty Russell on a Monday. Great news! I was meeting up with old friends and new. Right into 2016 and I continued…slightly decreasing my posts and relieved to do so.

I found I needed a good refresher of how this blog looked and made contact with an old Sydney friend, Tanya, who enriched the look and settings of the blog already set by my techie guy and that meant 2016 was even better. I made a commitment to blog almost every day under these topics:

I was having a good time, connecting and meeting new bloggers. Lots had just started blogging, others had left and there was talk of a linky being retired and I asked if I could, perhaps, with permission take over the Mondays with Life This Week. I got a lovely approval from my friend and in September this LINK UP kicked off….and is now #202!

I was also delighted to know there were link ups happening here (co-hosted) on Wednesdays  (sadly for me, this one is finishing up soon) and here on Thursdays. Thank you for your link ups! They are great places of connection.

I Want: to write my memoir.

I had been postponing the idea of writing a memoir of my life until a friend and blogger encouraged me to try writing the chapters in blog-type posts. I did this. Here is the first one. I was not to know it would be a while before the next one!!

I Want: to share awareness of head and neck cancer.

Those who have been here since then and before will know that things changed very fast for my life and priorities when I got a head and neck cancer diagnosis in May 2017. I did think long and hard before pressing publish on this but the love and support which came back to me proved why I love to blog and love my community. The post is here.

I Want: to promote and encourage education- self and others always.

I also told the story of how I like to learn…this was because as a life-long educator I was placed in the role of student at an adult crochet class and because of how poorly my needs were understood I never went back!

I Want: to feel well within myself and portray that confidently.

As an anti-dote to cancer treatments and letting myself be positively impact each day, I began a daily routine some 4 months into my cancer and started to ‘dress with purpose’. This became a photo on instagram each day…and then over time one big boost to my self-confidence when I had no upper teeth and was still in cancer-treatment mode. Here’s what this was about. 

I Want: to have women share their stories of courage.

From May 2019 I introduced a series to the blog for women I invited (or who self-invited) to share their stories: answering 5 questions. This series, Women of Courage continues….I am so pleased this has been a success. Many women have told me what it meant to share.

I Want: to show my appreciation to you, my readers, bloggers and friends. Some even joined me for my 70th birthday morning tea late in 2019. Many of you I may never met but already feel you are good friends. This blogging business is a great way for me, a relatively isolated retiree, to connect.

I Want: to continue blogging. Writing a post up to 2 times a week is good for my health and for my connections. Over time, I expect with fewer Women of Courage stories, my Wednesday posts will be a way to make some changes of direction if that’s what I choose.

This Is Why I Blog!

Thank you all. You have made a difference in my life.

Denyse.

Link Up #202

Life This Week. Link Up #202

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: 34/51 Self-Care Stories. #5. 24.8.2020

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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

You are invited to the Inlinkz link party!

Click here to enter


 

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