Tuesday 26th May 2020

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.

*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 weekly optional prompt is: 20/51 Share Your Snaps #4 18.5.2020

You are invited to the Inlinkz link party!

Click here to enter


 

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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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Remember This. 3/51 #LifeThisWeek. 5/2020.

Remember This. 3/51 #LifeThisWeek. 5/2020.

My plan for today’s post went back to the drafts when what I am sharing came through my social media. I want to remember this….how I have watched (via the internet) a person I’ve known as a blogger…as a young mum and wife…wend her way through the challenges of life that might for some be too much.

We share a love of photography, the beach, nature, kids, art, journalling and blogging.

Becky from here (do read her blog even though she has not updated for a while)  and also here on Instagram wrote this and I “wowed” and “woahed” my way through.

You see, I have taken an interest (from a distance literally) in Becky and her husband’s and family’s welfare for a while but moreso in the recent bushfires which were coming VERY close..too close to where they live on the far south coast and they needed to retreat to family in Canberra. I know they are home now and thankful their place is intact. The memories of what remains must be awful.

Becky and I, along with a few others in instagram, share our love for #1secondaday which is an app recording the month/year one second at a time. Becky was sharing hers and I saw what she wrote.

Remember this! Gratitude. Find it. Feel it. Be it. It’s part of Becky’s took to keep on keeping on through her mental health days and nights.

Like I said to her, “I am so proud of you”. I hope you too can remember this: Becky Found Gratitude Every Day.

 

2019’s 1SE. I had planned to say a lot when I shared it. About the year, about mental illness, about me having dropped all the balls that were once in the air. About people who are really there for you even when you’re not actively able to reach out to them- and those who disappear. About being seen as a ‘poster girl’ for mental illness, approached for tips and ideas for helping someone who is struggling but rarely being on the receiving end of those actions. About disappointing myself, stigma and toxic positivity.

There was a lot. It probably would have ended up as a blog post, I guess.
It’s all still very relevant to my situation, but I don’t have the energy to put it all together.

What I DO want to say though, is this; if you’re practising gratitude, focusing on those beautiful moments, acknowledging that you are blessed and you’re STILL suffering through the darkness of depression you are not broken. This thing I do everyday is part of remembering the good things (memory like a sieve), being so very thankful for this life, being in awe of these little people. But, I’m still not ok.

Being depressed doesn’t make you an ungrateful pessimist anymore than having a broken leg does.

Thank you so much Becky for sharing.

I hope too, that when you are up for writing a blog post again, you pop in here. Or, as I often recommend, link up an old post on a Monday. All are welcome!

 

So, I ask the question….as above….

And take care everyone.

Denyse.

I was inspired by Becky’s story, but I am also aware that mental health does not always treat us well.

If you need to chat confidentially to someone do call Lifeline 13 11 14.

 

Link Up #172. Life This Week.

Link Up #172. Life This Week.

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

* Please add just ONE post each week!

* 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 by leaving a comment because we all love our comments, right!

* Add a link back to this blog in your post somewhere, or on your sidebar.

*Posts deemed by me, the owner of the blog and the link-up, to be unsuitable for my audience will be deleted without notice.

* THANK you for linking up today!

Next Week’s weekly optional prompt is: 4/51 Australia 27.1.2020

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Click here to enter


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Gratitude In My 70th Birthday Month*. 43/51 #LifeThisWeek. 107/2019.

Gratitude In My 70th Birthday Month*. 43/51 #LifeThisWeek. 107/2019.

Yes, dear blogger, “this” is the optional prompt *Your Favourite Book As a Child for this week but I have gone on another direction leading up to November.

Here’s more about why!

P.S. Favourite book as a child was definitely the Folk of the Faraway Tree (and its spin offs by Enid Blyton)

Having embraced the notion of turning 70 at the end of November, I wanted to make it a special one via my Instagram feed (which also goes to Facebook and Twitter) so

G R A T I T U D E 

is my go-to for expressing appreciation for my life…to date!

It’s now something I am far, far more aware of as a healing tool for me. I used to dismiss my husband’s “wise words” about gratitude as my head was not in the right space back in 2015- early 2017 to feel anything other than a far bit of fearBut, over time, and with a cancer diagnosis, I got more into understanding the need to express gratitude and to feel grateful. Two things…not just say, but actually feel.

The photos below have helped me remember gratitude. And to express it!

Earlier this year I wrote 4 posts in a series about gratitude which were part of my linking up with Min here for Zen Tips Tuesday.

Post One. Post Two. Post Three. Post Four.

Now for my birthday month, I am celebrating with an instagram post expressing my gratitude.

 

A good idea for coming up to 70 I think!

Celebrating love..and US. Grateful for over 49 years together.

 

 

I am suggesting if you wanted to follow along, and you are on Instagram (ask for follow, @denysewhelan1 if you don’t already), then these would be the hashtags:

#30daysofgratitude

#celebratelife

I am going to list a large number of prompts (I made it to 70!) and *my husband is referring to mine (as above!) with no order nor even suggesting how they are used.

It is up to you!

  • my husband*      nature      food      creativity       skills
  • kindness       health     simplicity      out & about 
  • colours     the sea   my life    friends    water
  • thought    change   life stage   travel    movement
  • connection   community    seen   felt   hearing
  • smelled    tasted   world   spirituality    art
  • photography     weather    seasons    social media
  • birthdays    blogging    freedom   recognition 
  • books   music    fun    time    coffee   
  • contentment    cake    singing    life    shopping
  • education    career   health professionals    study  
  • curiosity    relaxation   mindfulness   painting 
  • my country of origin    language   history   games
  • grass    air conditioning   my car   family
  • our children    our grandchildren   learning 
  • socialising    enough money   shelter   cancer treatments

Just in case you would like some inspiration too: A few pertinent quotes:

“The roots of all goodness lie in the soil of appreciation for goodness.” —Dalai Lama

Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend.

“Feeling gratitude and not expressing it is like wrapping a present and not giving it.” —William Arthur Ward

We learned about gratitude and humility – that so many people had a hand in our success, from the teachers who inspired us to the janitors who kept our school clean… and we were taught to value everyone’s contribution and treat everyone with respect. – Michelle Obama

I don’t have to chase extraordinary moments to find happiness – it’s right in front of me if I’m paying attention and practicing gratitude. Brene Brown

source for all: Brainy Quotes.

Have you avoided, then changed your mind about celebrating a milestone birthday?

I admit I took some encouraging to get ‘with it’.

Denyse.

You can link up something old or new, just come on in. * Please add just ONE post each week! * 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 by leaving a comment because we all love our comments, right! * Add a link back to this blog in your post somewhere. I don’t have a ‘button’ so a link in text is fine! *Posts deemed by me, the owner of the blog and the link-up, to be unsuitable for my audience will be deleted without notice. * THANK you for linking up today!

Next Week’s optional prompt is: 44/51 Colours I Love 4/11/19

You are invited to the Inlinkz link party!

Click here to enter


 

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Calm and Balm For My Soul. 27/2019.

Calm and Balm For My Soul. 27/2019.

A gentle post of photos and how I help myself achieve more peace and calm in moments that are not always wonderful.

Some of those moments for me are pre-surgeries, recovering from surgeries at home, distracting myself from being hungry when eating was hard, calming my mind during a procedure or treatment by listening to music or an audio book, reducing my anxious mind’s whirling whilst being driven by my husband….not about him, about me, and not being in control!

I know many people have tried some if not all of these, but here’s my offering!

Getting Outside. Even Into the Backyard!

Making Something Creative.

Having These On Hand & On the iPhone Playlist.

These are some of the major ways in which I help myself achieve a greater level of calm. It is not easy. I am learning all the time. I also use the Calm app program each night. I highly recommend trying Calm and then signing up. I got a lifetime offer last year which has paid for itself over and over. Not only is there meditation but there are master classes in many fields such as cravings. There are adult ‘sleep stories’ which are a delight to listen to and hopefully nod off under the covers. I recommend these but no-one pays me to do so.

This link takes you to Calm and there is a sign-up for free sessions. See how you like it!

There is no sponsorship on my blog. I only want to share what I find works for me. Then if I tell you about it, and you like it too, that is a win!

What are your ideas for calm and balm for your soul?

Denyse.

Joining here with Min and friends for Zen Tips Tuesday. Thanks for the link up!

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