Sunday 12th July 2020

The Value Of A Smile. 46.1./2020.

The Value Of A Smile. 46.1./2020.

I’ve been contemplating the ways in which smiling can improve my/our health.

Maybe too, because of being socially isolated and  when being out keeping our distance, I have noted that when engaging with people a smile cuts through any communication to be gain a positive response often with a smile back!

Have you noticed this too?

Regular readers here will know I lost my smile for a long time when the top half of my mouth (and some of my top lip too) was removed because of head and neck cancer, and that I really, really missed my smile!

Recovering from Cancer Surgery 2017. Smiling as Best I Could.

Interesting to get to know my needs for social inclusion were/are based on my ability to connect with my smile.

I think it is fascinating that of the three things I lost for a while after the July 2017 surgery: ability to eat & drink, talking clearly and smiling…that I found

S M I L I N G was what I needed to do most.

There is science in this too!

Recently I read this:

We shall never know all the good that a simple smile can do. Peace begins with a smile.

Mother Theresa.

Years ago, I was seeing a psychiatrist for some issues and he talked of the fake it till you make it smile. It seemed silly to me then, but apparently there IS something to this.

I can share this practice , from my experiences of meditation and being mindful, of not allowing myself to retreat or resist what I am not liking. I still need to remember this. In fact, I ask myself ‘what am I afraid to admit, or do or be’?

I need to be in the moment. The only moment as that’s all I have.

Yet, the physical act of helping my body make a smile, works. It’s like a circuit breaker. I can look in the mirror and smile. Not always genuinely but it changes things.

Further advice in troubled times:

  • life the corners of your mouth with your fingers, literally putting a smile on your face.

  • let the smile remind you that acceptance is more powerful than resistance.

  • breathe deeply, then exhale slowly

  • invite yourself to be curious about whatever set of circumstances initiated your resistance.

           Ashley Davis Bush: The Little Book of Inner Peace.

I do engage as much as I can with feeling gratitude each day (and made a promise to do this every day in 2020). Smiling reminds me of how grateful I am for my health, and that even though my top lip is shrinking back somewhat, smiling is one very sound exercise as is connecting with the people around me.

I made my first vlog…I am not sure that is what I call it…but I now have the ability to make mini-videos at home and sorted my channel on You Tube to be able to do so. Yes, the ending is a bit unproffesh but the message is mine!

Take care, people….and do remember to smile.

Denyse.

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Head & Neck Cancer: My Life Now: 3 Years On. 41.1/2020.

Head & Neck Cancer: My Life Now: 3 Years On. 41.1/2020.

In April 2017, after much searching for “why” my upper gums and palate were so sore, swollen and inflamed, I insisted that my dentist “take the bridge and teeth out, please as…I need to know what is under it.” That was done after almost 3 years of “wondering why” and being told many different reasons by dentists that it was most likely candida and “you are not keeping under the bridge clean enough. Sigh. This story can be found here along with many as I have journaled the Head and Neck Cancer story here on the blog.

On 17 May 2017, after the removal of bridge and teeth, with worsening gum conditions, I received what was, in many ways, the answer I feared or at least had considered over the past year or  more before. Yes, it is CANCER and it is called Squamous Cell Carcinoma and off I was sent to the BEST place and people ever for more diagnosis, subsequent surgeries and much much more.

 

Summing up each year as a head and neck cancer patient with a rare diagnosis. 

2017.

May & June: Meeting my surgeons at Chris O’Brien Lifehouse. Examinations, testing and discussion on maxillectomy and using part of my leg. Visits to Westmead Oral Sciences for future mouth reconstruction preparation. Waiting. Testing. Being very concerned but at least I had the answer!

July: 7 weeks after diagnosis the major surgery of 11 hours. ICU and then recovery in single room at Chris O’Brien Lifehouse. This was for 10 days. Learned that I recover well and that I could speak (hallelujah) and eventually swallow water with no problems. Home. Learning to live much differently. Back for checkups: particularly of my leg which had donated skin and flesh.

August: September: October: at home recovery, lots of community nurse visits, learning how for eat differently and prepare food for myself. Independent walking then became driving the car again Back for a post-op check and to hear what was next.

November: On the day the same sex marriage result was announced I went into surgery for more skin to be added inside my mouth: taken from my thigh. It was all part of hopefully allowing my mouth to eventually settle to take a prosthesis of teeth.

It was announced I would become a Community Ambassador for Beyond Five.

December: watching progress of mouth and sending photos of the inside to my lovely Professor Clark for him to see it was going OK. Always relieved to hear back ‘yes.’

2018.

January: continue as for December.

February: third surgery. Adding a stent into the top part of my mouth to allow skin to stretch and eventually be able to fit in the prosthesis of teeth. Alas, this failed as the stent was removed too fast by my prosthodontic team much to my professor’s dismay and…..

March: I got the news a fourth surgery would be happening. Initially not happy at all, but realised it was inevitable…and my mouth was particularly challenging as they try so hard to work with ‘what is’ to have me look as much as possible as I did post any head and neck surgeries.

April: more time for me to see the prosthodontist to check the healing mouth and for my team to consider what would be next.

May: almost 12 months from diagnosis, back to COBLH as I call it for short….and a much bigger stent added in another 2+ hour surgery. Wow. Thigh gave up more skin for inside my upper lip.

June. July: So many drives back and forth to Sydney for prosthodontic work: measuring, practising with models of prosthesis with the eventual promise of teeth up top…..

World Head & Neck Cancer Day: July 2018. Held a virtual Soup for the Soul a fundraiser for Beyond Five and met the Central Coast Head and Neck Cancer Support Group at Gosford and became a member of this group.

21 August; Yes. Upper prosthesis fixed into the abutments and I had a smile back (a good one too, thank you team) after 14 months.

From then until next year, 2019, I had a considerable number of visits back to Westmead with adjustments and I learned ‘how to eat’ with teeth that were nothing like how my mouth had been post-cancer. More on the page as linked before.

2019.

January. An unexpected visit to COBLH for my head and neck surgeon to examine ‘extra skin’ which had begin to grow near the abutments on one side. This visit, as I found out directly was to ensure “cancer had not returned”. OH. It had not but it threw me a bit because I had not even given that a thought. This was when I realised CANCER is never far away from our thoughts.

February, March, April: some visits to both professionals in my team. Making adjustments and checking progress of skin inside my mouth. I admit I was often nervous of outcomes as my mouth was pretty sore most of the time. No-one could tell me ‘how long’ that would last but I continued to be reassured by my prosthodontist in particular “everything looks OK” “you are doing a good job keeping the area clean.”

May: 2 years since diagnosis and I was proud to have made it. I was incredibly grateful to my body for healing well and to all who cared for me and in particular to my patient and good listener husband.

End May: CT scan showed “all clear”

June: Visits became more spread out to the surgeon and prosthodontist and I navigated using these teeth to eat. It was and is a challenge. My right leg had some changes from the loss of the fibula as my right foot became affected with gait. But all OK really.

July: Continued visits to Westmead and put my energies into blogging about Head and Neck Cancer, interviewing a patient for Beyond Five and being part of World Head and Neck Cancer Day at Gosford Cancer Centre.

August, September, October, November, December. Regular check ups and visits to COBLH and Westmead but longer intervals. In October it was raised by my surgeon that a possible fifth surgery could be planned if mouth needed it but he had no real plans for it at that stage. Continuing to help raise awareness of head and neck cancer in various forms via social media. In November I celebrated my 70th Birthday!

 

2020.

January: continuing own care and progress at home.

February: visit to the prosthodontist where he was pleased with how upper gums were looking. I admitted to him my concern there may be need for further surgery as outlined by my surgeon and he took photos and would confer with him as needed. Took part in filming for Beyond Five series of nutrition videos for head and neck patients, carers and professionals.

Early March: Saw my head and neck surgeon who was delighted with my progress, no surgery needed and I remain “his poster girl for recovery”…see you in 6 months!! I was a guest speaker at a Charity Ball held by 4 doctors at Avoca to raise awareness of head and neck cancer and aid the work of Beyond Five with a generous donation.

And then COVID-19 stopped us all in our tracks for quite some time.

End May: as I write. My prosthodontist should have seen me for a check this coming week but Westmead is not open for regular visits yet. I am not concerned as my mouth is OK. I am not due to see my head and neck surgeon till September. I am going to my dentist here (the one where we got the diagnosis sorted!) in early June as he ensures the 8 teeth I have remain in good order.

Record Keeping: For Me!
Visits to Prof Jonathan Clark: Chris O’Brien Lifehouse. 2 hours each way by car. M1.
2017
Diagnosis: 17.5.17.
18.5.17 (diagnosis: surgery plan w A/Prof too)
6.7.17 (surgery #1 in COBLH)
27.717 (post op: A/Prof)

10.10.17 (cancer check)
15.11.17 (surgery #2: day. Down & home same day)
20.11.17 (post op)
5.12.17 (post op St George)

2018
7.2.18 (surgery #3: day. Stayed night before)
14.2.18 (post op St George)
1.5.18 (pre surgery #4)
16.5.18 (surgery #4 day. Stayed n/b)
2.10.18 (cancer check & upper prosthesis)
– long time between checks as I was seeing Prosthodontist a lot!

2019
8.1.19 extra cancer check: skin growing ok
19.2.19 cancer check
21.5.19 cancer check & CT done. All clear.
24.9.19 cancer check

2020
3.3.20 cancer check.

17 total to date.

Next due: September 2020.

Visits to Westmead Prosthodontist. 2 hours each way by car. M1.

2017  24.5.17 (pre surgery #1)30.5.17 6.11.17 (pre surgery #2)

2018  23.2.18 (post surgery #3) 1.3.18  7.3.18  15.3.18

22.3.18 28.3.18 12.4.18  28.5.18 (post surgery #4) 31.5.18

12.6.18  15.6.18  18.6.18  25.6.1  3.7.18   10.7.18   16.7.18

23.7.18   6.8.18   9.8.18

21.8.18: Upper Prosthesis Issued

28.8.18  10.9.18   25.9.18 8.10.18 (lower denture prep)  25.10.18

5.11.18  15.11.18  19.11.18  27.11.18   11.12.18

2019  21.1.19 (unscrewed UP)  4.3.19

13.5.19  16.7.19  5.8.19

17.9.19    25.11.19

2020 17.2.20  41 to date  Due: 25.5.20 (postponed due to COVID

What is life like for me now as a head and neck cancer patient…over 3 years later?

  • I think about my cancer less
  • I maintain my cleaning of the mouth more willingly and never miss it because I would hate the spoil all that hard work!
  • I accept that whilst I have ‘teeth’ on top that look fine, they do not function nearly as well as natural teeth.
  • I know how to allow for that more these days in terms of food choices.
  • I am more grateful than ever to have had such a cancer experience so that I can share, help and be part of a community which may need assistance from a patient like me
  • I am less fearful of cancer’s return but I am never complacent
  • I do my best to help others who may find my story helpful
  • I blog less than those initial 2 years but maintain the updates about head and neck cancer as it is for me
  • I connect with others on-line to encourage, share and offer support where it may be needed
  • I like to help where I can to keep the messages of head and neck cancer current
  • I do this via my social media and re-sharing words, links and information from Beyond Five
  • I maintain social media connections via a facebook group from New Zealand for head and neck cancer patients, carers and families
  • I am willing to share my story for others: meeting them, making a speech and connecting via emails and on-line

However, I am less the ‘head and neck cancer patient’ these days.

I am more Denyse, who is a retired K-6 principal and teacher, wife to B, mother to K & M, and Grandma to eight wonderful grandchildren. I remain passionate about education: of the self, and of kids…and support on-going education at any age. I love to connect via my blog, meet up for a coffee and cake, take photos to share on instagram, make art in all kinds of ways….and get outside to be “oh so thankful” to be here…to be well….and to share!

Denyse.

23 May 2020.

Written, in part,  in readiness for World Head and Neck Cancer Day in July 2020. Events this year will be virtual and I am sure, I will be sharing more as time goes on. For now:

 

 

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Special Anniversaries.19/51.#LifeThisWeek. 38/2020.

Special Anniversaries.19/51.#LifeThisWeek. 38/2020.

May is a month of memories for me and that is the theme for my ‘special anniversaries’.

In my life, and my family, I have tended to be the one who remembers. Dates, places, weather, occasions and more. Sometimes not perfectly well. I give my age as an excuse now, but I tend to be pretty much sensitive to time of year, weather and place. So, this is my reason for picking May….because:

May, in my instagram feed, is a time I am using memories of people, occasions and time for mark the occasion. For example, without giving years away, 3 women who are very special in my life have their birthdays in May. My 2nd granddaughter on 6th, my niece on the 22nd and my late and cherished Aunty, on 31st. It was in May 2006 we celebrated what we did not know was my mother’s last Mother’s Day. Mother’s Day was an occasion for her but as the years have passed, we (the family) do not make a fuss…because, I found it was a bit of a pressure to be honest..on me! So, that my friends is how I feel. Further on I explain more.

More about May. THIS is probably the reason I chose May for this as my post. It was in early May 2017 that the investigations began in earnest for ‘what the heck was happening in my mouth’….and yes, this has been recorded here in detail. However, just before I made the news of my cancer diagnosis public, I was honoured to have my story published in Celebrating Women. It was a great distraction too. I blogged about it here.

And then I knew what was under those teeth and the bridge that covered them…squamous cell carcinoma AND it had spread to under my top lip too. That knowledge –  shocking that it was cancer but not surprising either – given how long I had been putting up such pain, aggravation and limited ways to eat for over a year!  And I got this news via the phone call from the oral surgeon, at home, alone on Wednesday 17 May. Read more here if you would like to.

The biggest challenge though for scared me (of IBS and travelling not cancer!) was that I would have to be driven by my husband to Sydney’s Chris OBrien Lifehouse on Thursday 18 May 2017 where I would have my first (very long as it turned out) consultation re my head and neck cancer and what would happen to eradicate it. All, we hoped! I have written about the courage it took for me to test my exposure therapy is a big, big way in other place, here for example. And, we set off and became better informed – BIG time – about what was next.

What on earth did I do then? Oh, I was OK…after some time to gather myself emotionally, and my husband and I drove the long drive home in the dark with a feeling of confidence that where I was to be treated and by whom meant the confidence of knowing it was right for my cancer. Both of the head and neck cancer surgeons – the A/Prof Ebrahimi and then Prof Clark ‘felt’ then after the pretty rigorous examination that surgery only would be required but until that time, and lymph nodes’ samples etc were taken for pathology they could hope for no radiation.

But wait, there is more. Always more it seemed to test me that May!

24 May and 30 May were “back to Sydney” appointments but this time to Westmead in Sydney’s west. We knew this area well as we had lived in the region for many years. It was, however, the first visit to Oral Sciences…aka the dental hospital where I/we would meet the man and his assistant we got to know very, very well over the ensuing years. I admit I needed my husband there with me and the tears on that first visit came pretty frequently as I did not compute/understand well as all what would be happening but when chatting with my husband he was very confident of the prosthodontist’s role and skill in the area where I was to have surgery. He also accompanied us to radiography to get exacting scans done and to test blood flow in my legs. It was later that I found as I had better blood flow in my right leg, then that would be where the fibula and flesh/skin would be harvested not the left as originally planned.

Other May Memories!

In my recollections of May, I found Mother’s Day to be more of a day of obligation rather than a day to celebrate mothers. My mother in particular. I have often thought it a sad thing though because it is my father’s voice of judgement I hear re mother’s day not Mum’s. Ever.

It’s a complicated thing this life and traditions isn’t it! He (Dad, now 96) was brought up in a single parent childhood following his Dad’s untimely death in 1935 and Dad’s mother grieved her whole life after that and I am pretty sure nothing that was ever said nor done for her was appreciated wholly.

For whatever reason, then Dad made sure “we” celebrated our Mum. I have memories of breakfast in bed for her.,…and she did not enjoy that! I do recall her appreciation of cards and flowers. We, as then grown up children, might try to combine a mother’s day morning or lunch or even dinner.

To me, also a mother, it felt like “I” missed out. And I dislike that I even thought that.

So, despite my now-knowledge of where all this probably emanated…I still thought similarly in ‘shoulds’ around Mother’s day. So, I often got disappointed…and I am embarrassed about that. I vowed sometime back never to do ‘that’ to my adult kids so celebrated without any fanfare at all nor expectation until we left Sydney.

The first year I heard from no-one.

Yes, I was sad…and on subsequent Mother’s Day I may have had a card or a phone call or both from one or either of our adult offspring. In 2017 not knowing of my cancer investigations I had a visit to our place. Nice. We put on lunch. See photo above.

Then in 2019 I met my daughter and we had morning tea out together. No kids. Just us.

This year, as this is posted, we will have had our first visit in COVID-19 back to her house for a mother’s day morning tea.

Making New May Memories. 

  • Mum taught me quite a bit about cooking and often have her in my mind as I try to replicate her recipes. To that end, as I am visiting Dad this week I have made Mum’s recipe of lemon butter just for him. Food is such a powerful memory!
  • Mum also advised me about colours and planting of colourful flowers and I use this knowledge in picking and placing plants.
  • Mum’s smile was one I inherited….and a liking for brightly coloured clothes.
  • I make May a time for reminiscing but also for celebrating…..how far I have come, post head and neck cancer!

ONE Year ago in May I got my “end of two years” of cancer surgeries and treatment Apple Watch and it is worn with pride every day and continues to motivate me to move more!

My reward for 2 years post cancer: apple watch

TWO Years ago in May I became more resilient than I knew I could be as I faced a 4th (the last, I hope) reconstuctive surgery because my mouth and skin had not recovered well enough for the upper prosthesis to be fitted.

Post surgery #4 was a shock!

THREE Years ago in May I found how many people in my life cared for and about me and it was humbling. Many of those are reading this post now. Thank you all so much for being who you are.

That’s my special anniversary….May!

What special anniversaries are part of your life?

Did you celebrate Mother’s Day yesterday?

Thanks also for your kind words last week AND 100% of bloggers who linked up, commented on my post.

That IS a win/win!

Denyse.

Link Up #188.

Life This Week. Link Up #188.

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.

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* THANK you for linking up today!

Next Week’s weekly optional prompt is: 20/51 Share Your Snaps #4 18.5.2020

You are invited to the Inlinkz link party!

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Women of Courage Series. #38 Tara Flannery. 37/2020.

Women of Courage Series. #38 Tara Flannery. 37/2020.

Trigger warning: domestic abuse, cancer, psychological help.

 

 

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.

Tara Flannery, aged 48, and I have never met but we have much in common. Firstly we are teachers. Secondly we share a similar team caring for us as head and neck cancer patients. Thirdly, we want to help others  and this is why I was delighted with Tara agreed to share her story as a Woman of Courage. We are planning to meet for a coffee and a chat as soon as we can post-COVID-19. It will be a long and much needed catch up for us both. Welcome to the blog Tara and thank you again!

 

 

 

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

I have had a couple of moments where I have had to dig deep.

Becoming a single mum with a 18 months old and finding studying full-time, no home, no family support

Discovering I had cancer and the treatment that followed.

 

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

I learnt I could do anything I set my heart too.

I learnt that that there are a lot of generous people out there.

I learnt that there are a lot of judgmental people out there.

I learnt that it is not easy to walk away from domestic abuse. It is easy to tell someone to get out but to actually do it is another thing completely.

I learnt that the love I have with my husband is unconditional.

I learnt that others take on your cancer as their problem and can turn against you.

I learnt that I have amazing friends who still loved me even though my anxiety turned me a tad neurotic.

I learnt having a cancer diagnosis will not make family who have turned their backs come back.

I learnt that not many people have the ability to empathise or self-reflect and that is OK.

That is their personality not mine.

I learnt to appreciate every moment I have with my friends, husband and children.

 

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

Don’t let other peoples perception of your reality be yours.

You don’t need to be strong – if you need to cry, scream, throw something. Do it!!! Of course without hurting others 😉

Go talk to a psychologist. It is nothing to be ashamed of. You need a safe place to vent and sort through your emotions.

I didn’t realise how deeply I was depressed and filled with anxiety until I had a year of therapy.

If you are prescribed medication to keep you calm. Take it. Again – nothing to be ashamed of.

Your mind will be racing – you need sleep and rest. These medications are not forever. I took valium and antidepressants for 18 months.

I am off the valium (except for procedures where I need to be awake) and am on minimal dose of antidepressants for most likely the rest of my life.

I suffer Generalised Anxiety Disorder.

Trust your medical team. They have helped numerous people before and will continue helping people like you.

Trust their judgment and advice.

Don’t make major decisions – you may come to regret it later.

Eat well – try to evaluate your nutrition. Fresh whole foods.

Try alternative therapies – it can’t hurt (research them thoroughly before you do – there are a lot of con artists out there!)

Learn about self-reflecting. Try to be aware of how you are acting.

Try not to take other peoples behaviours personally.

 

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

I think I would probably handle it the same way I did.

I consider myself a resilient person. But having a cancer diagnosis is traumatic and I don’t think I would be calm if diagnosed again.

If I had to go through a divorce again. I would be mentally prepared and I know I could support myself and get through it.

 

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

Try to choose a reason why you need to be here – or set a goal.

My goal is to be a Grandma. My girls are only 21 and 15 but setting that goal and having that as my focus helped.

I also had a family holiday booked that I was keen to participate in.

I worked hard at rehab and was assured by my medical team I could do it.

Do not set unrealistic goals.

Accept help. Any help. Try not to be a martyr.

 

What an amazing and heart-felt story of courage from Tara. So grateful we ‘found’ each other on-line and thanks for sharing the ups & downs of head and neck cancer surgeries and mouth prostheses so I know I am not alone either!

Denyse.

 

 

For readers of this blog post: 

The following information may be helpful to you or another. These are Australian-based.

Your Family G.P. can be a helpful person to listen and make referrals.

Lifeline on 13 11 14

Beyond Blue on 1300 22 4636

Phone 13 HEALTH (13 43 25 84) for 24 hour assessment, referral, advice, and hospital and community health centre contact details

Qualified Psychologists can be found by visiting https://www.psychology.org.au/FindaPsychologist/

Australian Counselling Association is on 1300 784 333 to find a counsellor

Cancer Council Australia https://www.cancer.org.au/

Beyond Five. Head and Neck Cancer Organisation. https://beyondfive.org.au

 

 

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.

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

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

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

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

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

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

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

 

How did head and neck cancer affect your lives?

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

 

 

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

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

 

 

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

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

 

 

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

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

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

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

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

 

 

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

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

 

 

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

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

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

 

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

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

To Love…and Stuart and Jill.

 

Denyse.

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

 

 

Life This Week. #184.

Life This Week. Link Up #184.

You can link up something old or new, just come on in.

* Please add just ONE post each week! NOT a link-up series of posts, thank you.

* Feel free to go with the prompt for the week to add your ‘take’ on the prompt. Or not.

* Please do stay to comment on my post as I always reply and it’s a bloggy thing to do!

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* THANK you for linking up today!

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Out & About: Head & Neck Charity Ball 12/51 #LifeThisWeek. 24/2020.

Out & About: Head & Neck Charity Ball 12/51 #LifeThisWeek. 24/2020.

Regular readers and followers know I was diagnosed with a head and neck cancer in May 2017. Posts are here.

Then, in 2018 I was invited to become a Community Ambassador for Beyond Five. More about that here.

In my role helping share awareness of head and neck cancer facts and more via social media, this blog and in person, I really find it satisfying to give back:

  • to offer my skills and experience as an educator
  • and to feel and stay connected with other patients and their families/carers with a head and neck cancer,
  • attending meetings on-line and off relating to head and neck cancer support
  • to be part of social network head and neck cancer groups
  • to assist professional teams including my professor, speciality nursing staff and allied health professionals by sharing my experience on-line and in person
  • a recent interview for a Beyond Five project on nutrition
  • and then this……

Attending The Head and Neck Charity Ball at Avoca Hosted by Four Amazing Junior Doctors on Saturday evening 7 March 2020.

 

Here is the post from Beyond Five: the organisation to benefit from all the fund raising from attendance and silent auctions:

Beyond Five

Last Saturday night Caitlin Frede, Grace Swain, James Shannon and Catherine Zil, a dedicated team of junior doctors working within Central Coast Health hosted a #HNC Charity Ball https://buff.ly/37Aiejn at the Avoca Surf House in NSW to help raise awareness of #HNC and funds to support Beyond Five.

Over 100 people attended including Caitlin’s family, who lost her father Peter Frede to #HNC in 2015, and healthcare professionals from the Central Coast Cancer Centre.

Caitlin shares the stark and moving story of her father here. Thank you Caitlin for sharing your perspective in this cancer which has cost your family the presence of a husband and father…and a wonderful human being….

Dinner guests listened to powerful speeches from Caitlyn and former patient, Central Coast resident and Beyond Five Community Ambassador, Denyse Whelan who talked about her treatment for #HNC. Dr Puma Sundaresan, Radiation Oncologist at Western Sydney Health and Beyond Five Director also spoke about the need to raise awareness of #HNC and the importance of early detection.

Thank you to everyone who supported this fabulous event, helping to raise over $4,000 for Beyond Five. We are incredibly grateful!

My social media recount of the evening. 

A glorious evening at Avoca beach hosted by a group of junior doctors currently working on Central Coast to raise funds for @beyondfiveorg

As a head and neck cancer patient I know information shared helped me.

This is why I am privileged to be a Community Ambassador for @beyondfiveorg

Tonight I shared part of my story with over hundred guests many of whom were in

health medical dental allied health fields.

My thoughts during and after this event.

  • How fortunate we were as a group to be able to come together as this preceded the coronavirus restrictions, even though at this time, everyone was become familiar with what would be our future without handshakes and hugs. I was so honoured to be asked to speak about my head and neck cancer experience and meeting with Caitlin for coffee as part of her planning I was even more impressed with her initiative of that of her colleagues. They are working on the NSW Central Coast as part of their medical training.

 

  • Lisa Shailer, pictured above, is the Head and Neck (and Lung) Cancer Nurse who oversees new and on-going patients at Central Coast Cancer Centre at Gosford Hospital. She, along withe some head and neck cancer patients, started the Central Coast Head and Neck Cancer Support Group. Lisa is the person who ‘found me’ via my article on-line with local MP Emma McBride and invited me to attend the inaugural Soup for the Soul event at Gosford in July 2018. Since then I have been an active member of the group, in my role as an Ambassador for Beyond Five.

 

  • Dr Puma Sundaresan and her husband attended the event and whilst Puma represented the board of Beyond Five, she was there for sentimental reasons as she was a radiation oncologist on the Central Coast before taking up her current roles in Sydney. She spoke about the fact that the rise of head and neck cancers in younger people is becoming greater and there is a connection with HPV. She outlined too, that the Central Coast has a high rate of head and neck cancer cases relating in many cases to smoking and drinking.

 

  • For me it was an evening where I felt privileged to be amongst people who cared about head and neck cancer and getting the messages out there. One person came up to me and told me she is a dentist in the practice where I attend and where, along with my dentist, I first was told we were looking for cancer. What is was we did not know, but I am very grateful she showed support as does her workplace.

 

The future is bright. 

Yes I said that! We are, at the time of writing, in a pandemic state thanks to coronavirus or COVID-19 of course. I know there are going to be more restrictions imposed on many of us soon, For some, travellers and others, some cannot even get home. But I know, with the air of care, professionalism, hope and generosity I witnessed on this evening with the focus on helping others with head and neck cancer support, we have excellent people in our health professions. These times ahead are going to test them. However, if they can remain true to themselves using the skills, talents and more I was privileged to witness the future will be bright.

Notes on the fundraising experience.

These next months are going to see no gatherings for meetings and fundraisers for any cause.

Head and Neck cancer charity Beyond Five usually hosts a Soup for the Soul Fundraiser in July.

Whilst we do not know what that month will bring for getting together we may assume, like the Head and Neck Patient and Family Forum now moved from June to October, there may be flexibility in fundraising.

Maybe like my last two years, a virtual Soup For the Soul!

Recent update from the Head and Neck Charity Ball is that $4.400 was deposited into Beyond Five’s account. Yay.

Lastly….

What a beautiful scene from this event place at Avoca Beach N.S.W.

Take time to notice nature is always calming…and for  many of us in uncertain times, this can help.

Go gently and stay well everyone.

Denyse.

Link Up #181.

Life This Week. Link Up #181.

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* 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.

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Share Your Snaps #2. 10/51. #LifeThisWeek. 20/2020.

Share Your Snaps #2. 10/51. #LifeThisWeek. 20/2020.

Welcome to the second in the series that comes along every 5th week here. “Sharing Your Snaps” as an optional prompt grew from a need to have some less-wordy posts and more photos to share! This one though is, like me, wordy.

Now: before you start….I am absent from the blog for now. As this is published I am either still on my way to Sydney: specifically Parramatta Eye Hospital and Day Surgery to have the first of my two cataracts removed OR in the place itself. My dear husband is the kind chauffeur, picker-upper from after surgery and the one charged with caring for me on our overnight stay. No idea of how I will be but know I am a good recoverer…because after Tuesday, we have a night at home, then back down the M1 on Wednesday for the left eye to be done. We go home that evening as my opthalmologist/ surgeon is happy for me to present to the Morriset rooms for check up on Thursday. This surgery has been coming for a couple of years and now, sigh, it is necessary. I will be back here when I can and am ready to do so in a semblance of being able to read still as my eyes will be a bit sore I am told. 

When I was in Sydney, specifically the suburb of Camperdown, I decided it might be a good idea to do a “day of cancer check” post.

“Sharing the Snaps and The Words!”

Missenden Road (just off the Great Western Hwy) is where the main arm of this major Sydney teaching Public Hospital is and it’s called R.P.A. or Royal Prince Alfred Hospital. On one side of the road too, is Sydney University with its residential colleges and more. “MY” hospital, as regular readers know is called Chris O’Brien Lifehouse, and is just 6 years old. The building replaced an older part of the R.P.A. complex I believe. It is opposite a part of R.P.A., St Andrew’s Residential College and just down the inner road,  is Gloucester House, where my 96 year old Dad had a ‘melanoma’ removed…not a melanoma so good news!

Here’s my day: Tuesday 3 March 2020.

Left home around 2 hours prior to appointment. Drove myself. This has been the case since early 2018 for me. Happy to do so.

The trip is via the M1 or Motorway 1 which is a dual lane highway with speed limits of up to 110 kmh but two sections which are 80 kmh because of continued road works. I usually do not need a loo stop these days…go me…and wait till here for that.

I generally enjoy the drive via the M2 then over the Harbour Bridge (been driving over it since 1967 as a licence holder)  and along the Western Distributor until I turn left at the Sydney Fish Markets and up via Pyrmont Bridge Road and across the highway into Missenden Road. When we first visited Chris O’Brien Lifehouse, my husband drove (I was way too caught up with my day-old cancer diagnosis) and then as we came down for surgeries and then checks after surgeries he came too. We stayed twice in apartments shown here, and at 6.00. a.m. meandered up Missenden Road in winter-morning light for one surgery and daylight for another.

And, then here’s why I am here! Chris O’Brien Lifehouse is named for the visionary person, who died far too young, Professor Chris O’Brien. It was his vision, and drive which eventually saw the Federal Govt and State come together to fund this place. He did not see it happen. His wife, Gail has been there for every part of the journey. Every. Day.

Do come in. Take care first and welcome. This is why I love this place….it does not have the cold feel of any hospital I have visited. Music is heard, people chatting, creating art and just taking time to rest, look around and wonder. I still do.

Here’s my favourite sweet treat and great coffee. People watching too. Some medical and surgical people catching up. Patients brought down by a friend or family from their room and those of course, who are maybe waiting and wondering. It IS a cancer hospital I need to remember…..I have only just started being comfortable with enjoying this time for a snack since October 2018..teeth were in by then.

Oh, is that the time? Almost 1 p.m. Time for taking myself to the Clinic on Level 2.

I do prepare for a bit of a wait but last week it was around 10 minutes. Glad to have a 1 p.m. appointment booked always so I have a good trip home.

Kisses, hugs, smiles and gifts of little cakes and brownies. Oh, yes, and a cancer check up too. I can never forget that. I know once I tried to vanish it as a thought and my Prof said “Denyse I am a cancer doctor”. Yes. I know. After a great (but short as I try not to over step my time) catch up, proper examination by viewing and feeling – the glands around my neck and chest, he declared “see you in 6 months”. Wow. So good to hear. Delighted. Will be having a CT scan before that visit. Photos, please! Time for an updated one or two.

My Professor is the Chairman of Beyond Five, the organisation where I am a head and neck cancer community Ambassador and he and his surgical nurse assistant Cate were delighted to hear of the event on Saturday 7 March held on the Central Coast where I will speak and all funds will go to Beyond Five.

The drive home was good. In fact I was home without a stop in under 2 hours. I found it a challenge (but I was good) not to use my phone at all in the car as NSW is now having random cameras catching drivers (and I heard passengers..cannot confirm) using their phones. 5 points and a heavy fine. My phone, once I started its audiobook, sits inside the console where no-one can see it.

I hope you found My Day of interest. I hope to be back to comment when and if I can…and to read but I shall have to ‘see’ how I go.

Denyse.

Link Up #179.

Life This Week. Link Up #179.

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.

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Changes For The Good: Head & Neck Cancer & Me: Eating. 15/2020.

Changes For The Good: Head & Neck Cancer & Me: Eating. 15/2020.

Next week, I have been asked to be a patient-participant in a video being made for Beyond Five on nutrition. As many of you know I have been a Community Ambassador for Beyond Five – the Face of Head and Neck Cancer – since late 2018.

Announcement of My Ambassador Role.

I was enthusiastic to take part in this video initially…then had a small crisis of confidence (for the want of a better expression) and began doubting my relevance. I was, and still am, firmly encouraged by both the CEO of Beyond Five and my husband that I do have that quality! Thank you.

There is a back-story to this and I am going to share it briefly before making my points about the GOOD that has come for me in terms of changes from a diagnosis of Head and Neck Cancer.

Denyse and eating…before Head and Neck Cancer. 

From early days in my teens and twenties I would self-soothe with lollies, chocolate and whilst I did not over-eat significantly, I did establish a pattern of eating for comfort. None of this was ever really a secret (certainly I did not have any kind of eating disorder, for which I am grateful) but it still was something I would not admit to doing (except me) and then over time, it probably began the life-time (decades rather than all of my life!) of eating for reasons other than hunger or to nourish myself. The bigger picture (pun intended) was first written about here and then, as I became more accountable for my past behaviours around eating, I updated here. Blogging is so good for this!

The above posts show that I acknowledged my eating and what it was doing to my appearance, general well-being and health. Yet, the ‘same amount of weight’ that would come off over a few decades (3 times at least) would also go back on.

What was I missing?

  1. Probably other ways in which to see food.
  2. Or maybe the maturity (even though I was mature in years) to see through the hard yards.
  3. But maybe none of this.
  4. I think as a serial dieter/eater/non exerciser and one who ate emotionally I just did what I did.

A Breakthrough of Sorts: Not Great Though.

From 2013 onwards, I acknowledge how serious my weight had become as a result of eating and less movement when my GP challenged me to try to reduced weight or she would be sending me for a Glucose Tolerance Test as I was becoming pre-Diabetic 2 in my test results. I managed to do as asked and my weight reduced enough to see progress. Yay.

Then from 2014, my anxiety ramped up (we were about to sell our house to pay out the mortgage as I needed to stop work at almost 65), and Irritable Bowel Syndrome re-entered my life after a few decades absence. From then I found I literally could not eat as I did before without the effects of mostly explosive diarrhoea. Yes. Unpleasant and socially restrictive.

Over the time of our move to the Central Coast, and some of my emotionally challenging times to adapt to life’s transitions, this continued to be a pattern and without ‘any real effort’ my weight slowly reduced.

I did, however, raise with my doctors, that I might have had cancer. I did look pretty gaunt. No, they said. OK. I did feel anxious almost all the time.

My Diagnosis of a Rare Oral Cancer: 17 May 2017, and How That Changed Me.

My story is told here on this page: Head and Neck Cancer.

This is a little reminder for me of what I went through back then. I was told on 18 May 2017 that where my cancer was located (upper gums and under top lip) I would require a compete removal of the top half of my mouth. THAT took a while for me to get over, in terms of the shock. Then I went home with my husband and thoughts raced in my mind. One was, if this is making me stressed, then how can I self-soothe or calm if my well-ingrained practices had been to eat something sweet, salty, crunchy or whatever. It was a rhetorical question. I had 7 weeks to wait for surgery and I was so anxious, eating was not high on my list.

Early Days And Getting Hangry! 

Following my 11 hour surgery, 3 days in ICU I was transferred to a room at Chris O’Brien Lifehouse and added to the regime of drips was, via my naso-gastric tube,  some nutrition. The liquid kind. It was, for me, yucky but in one way that was my aversion to milk-type drinks. However, as each feed slowly dripped into my very, very empty stomach I had to change my attitude towards this feed. I started by telling myself “it is healing me and nourishing me” as I get well. I know I was going well as each time my professional team dropped by, they told me so. BUT…even when I finally got to try to oh so good nectar of WATER orally, I began to feel hangry (cranky when hungry!). By Day 8 I was allowed some clear fluids. Hallelujah. Broth, jelly, and then over time until my day of departure: Day 10 a few more soft food choices. No teeth, except for 8 bottom ones AND a very stitch-filled mouth!

And then I Came Home. Lots of Eating Ahead? Maybe.

Before I left hospital I was visited by the dietitian who was incredibly helpful with guidelines for me, and offers of samples of food-in-a-bottle and that she would follow up my progress at home via phone calls. I remember her words “now, you need to put on weight”. WHAT? No-one ever had told me that. It was a complete revolution in terms of instruction. I now know that yes, head and neck cancer patients need to keep weight on but no-one has ever really revealed why. Note to self: ask at next visit to my team.

My return to eating caused a great deal of distress in me because diarrhoea came back with fury as my emptied stomach  rebelled with a strong anti-biotic inside. I did not, as I thought I had to do, follow the dietitian’s advice but that of my local GP who had already seen me through diagnosis and now post-operatively. His words were “eat what you are up to and can keep you going.” Drink water as much as you can. With that, I did share the news with the dietitian when she called and I appreciated her services on offer but has to do this ‘my way.’

What I Did Then. 

My mouth did restrict my intake of food but I learned to adapt and seek foods that were both nourishing and pleasurable in texture/ taste. Mind you, my reconstructed mouth was quite a barrier to a variety of tastes but it was important for me psychologically to eat normal food. But also the words from the dietitian echoed and to “add value to food”. This meant a tiny lemon cupcake would have some dairy added to it: yoghurt, custard, ice cream. I became well-versed in the inner conversations re “fun to eat but also eat to heal”.

None of this food preparation or meal decisions came really easily and it required patience on my behalf as I was normally the meal-maker and my right leg’s giving up of its fibula, skin and flesh for my mouth, meant I could not stand for long…nor did I have much energy. But, my patient husband (and then full-time carer including grocery shopper) would help me as he could. I might not have been able to bite into some vegemite toast but I could savour the flavour and add some slices of avocado for nourishment. There are posts here, and  here about eating in those days.

Before I became affected by the anti-biotic, this was what I ‘could’ eat. Soft, slippery and full fat foods.

And Over Time, I Made Changes as My Mouth Healed. 

From July 2017 until August 2018 I had only 8 teeth in my mouth. It is amazing however, that humans can adapt! Mind you, I also add, THIS human had to become creative in her eating as boredom set in quickly and a sense of resentment about what head and neck cancer brought to my now lifestyle. I did make the effort to feel more grateful and appreciative of all that had been done for me. There were 3 more surgeries too, inside my mouth, to prepare it for an upper prosthesis of teeth.

Creativity included:

  • value adding to sweet foods like small cakes which were easy to swallow AND made me feel less deprived
  • making up some small plates of foods that would have me feeling like I was not missing out
  • inventing dishes for me: crustless pies, taco-less tacos
  • finding more and more ways with mince. Thank you to my A/Prof who advised mince would be a good food and my iron levels did slightly improve
  • allowing foods like small pieces of milk chocolate to melt on my tongue
  • iceblocks and paddlepops eaten with a spoon – my mouth did and still does love cold

Weight Was Good  Healthy…. Then I Got Teeth!

Notice my crossing out of good.

This is a judgement I have made like many over many years about eating. I now see, and have learned to see that my weight can be HEALTHY even if the numbers have increased. I was incredibly excited to get the upper prosthesis attached permanently to the abutments in my jaw. I remember fantasising about crunching food, chewing food and more. Well….that is what it was… a fantasy.

A reconstructed mouth is a blessing alright in terms of appearance and function for sure. But it does not do all that my mouth could do, so again, I have needed to adapt.

Adaptation took some tearful routes where my disappointment in not being able to eat something was palpable. I know I tried various foods including crunchy chips and they were/are a huge disappointment as they sting inside my newly re-skinned mouth and I could not swallow them. Onward to crunching into a piece of apple. Actually no. But I can eat small pieces or even better if I grate it.

I could add many more adaptations and they will form a new post in the future.

What I want to write about now is my weight, self-images and stories that can be untrue.

Changes in Me For the Good. Health and Head and Neck Cancer.

From August 2018 until February 2019 my weight from the rather steady figure of around 69kg increased by around 5 kg. I could feel it but I also LOVED feeling well and having more food choices. I was somewhat disappointed for a bit that some of my clothes were more snug…then I said to myself “that was because you could not eat much nor as well as you can now”. It was to be an on-going inner conversation (of self-judgement) for a while.

When I realised what I looked like (one aspect of me) was HEALTHY I began to accept that this was a good thing.

  • In fact, I knew it was. I did however let the old weight-centred thoughts creep back.
  • I started to believe I might get back to the much more heavy person I had been in 2013-14.
  • I was scared but the clothes and the scales did not lie. I stayed around the same.
  • For many months, and now it’s a year. It has not happened.
  • In fact, I am a little less on the scales than a year ago.
  • I use my clothes now as a measure of how I am going.
  • Very steadily and the scales are used rarely but they are telling me what I feel it true. So, no more stories!

My Appearance on the Beyond Five Video on Nutrition.

I now look forward to helping present the patient’s perspective on what I have learned personally about nutrition and how to nourish my soul as well as my stomach and mouth. I can honestly say I eat for both pleasure and health yet in a different way from any other time in my life.

This is why I am grateful for my diagnosis of head and neck cancer.

I have learned to sooth myself through meditation, talking with my husband, using my journal, art and going out for coffee. This is one important strategy in my every day self care. In fact, the more I self care, the less I even think of a need to soothe with food. How grateful I am for that.

Each time I go out, or plan a meal or snack at home I often have to re-think from the old familiar paths of pre- head and neck cancer.

  • Quantities are very different. That’s fine.
  • I make mall dishes I can freeze.
  • I carry small packs of biscuits in my bag to have with a coffee.
  • I know too that I can manage certain soft sweet foods with my coffee and will often ask for a bag to take half home.
  • I have still not ventured out for a ‘real meal’ but neither of us are that interested.
  • We had had lunch with family and entertained here.
  • I am less self-conscious of my eating these days.
  • I do always have a small bottle of water nearby.

 

I Am Going Well! 

This is my stock standard answer when I am asked how I am. It’s true. I am indeed. I am glad to have seen the good that head and neck cancer has been for me and my eating. This is me on Thursday 20 February enjoying being back near the water after attending the Central Coast Head and Neck Cancer Group Meeting..and catching a treat of a small iced cupcake with a coffee on the way home.

There will be some updates after the making of this video but already, just writing out what was making me feel less than my normal confident has done me good.

Onward!

Denyse.

 

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