Wednesday 13th November 2019

My ‘Head & Neck Cancer’ Spring Story. 39/51 #LifeThisWeek. 99/2019.

My ‘Head & Neck Cancer’ Spring Story. 39/51 #LifeThisWeek. 99/2019.

Spring is here.

In Australia and the rest of the Southern Hemisphere. I am glad to have cool-ish evenings and lovely days but, I know from experience, the lengthening of days will bring more heat and then I will be complaining a bit as I can when the heat is on!

True to my word of needing AND wanting to get out and about I ventured to the local beach nearest to us on Friday only to find it closed off due to sand erosion (climate change, anyone??) so I took another way, up the hill then  down to arrive at the sand and gentle waves. Cold water but worth it for the paddle.

Head and Neck Cancer Check.

When head and neck cancer arrives in your life, you are taken into new and different worlds. Fortunately my ventures have been to improve my life’s quality, living with a rare cancer, and meeting many professionals who have contributed to my well-being since my diagnosis on 17 May 2017.

On Tuesday 17 September, a very rainy day, I drove to Westmead Oral Sciences for my 38th treatment with my prosthodontist and he could not have been more pleased with how well I am maintaining the skin (grafted) around the abutments (added implants to my ‘jaw from my leg’) and we both cheered when I told him I am for the most part pain free in the area that had been bothering me for months. Yay.

On Tuesday 24 September, this time on a sunny day, I arrived at Chris O’Brien Lifehouse carrying cards of appreciation and little cupcake packs for my professional team. These people have cared for and about me for over 2 years now and my relationship is close and warm as they are when they note my progress. I enjoyed a catch-up with Nadia from Beyond Five with a coffee as well, and then to Clinic on 2nd level for my cancer check. First seen by Cate, and then Jonathan and the consensus was I am doing so well, no return till early March 2020. As I finished up, I asked Jonathan how I was going in recovery and his words made me smile:  “Denyse, you are our poster girl in recovery”. I left feeling very well indeed. And the cupcakes and cards were appreciated.

There’s More To Life Than Cancer.

I could not be more appreciative of how well my cancer recovery is going and as a result, I am expanding my world and re-connecting where I could not before as recovery, treatments, resting, driving to and from Sydney took their toll.

On Tuesday, after being to my head and neck check up, I drove out to North Kellyville P.S. to see the granddaughter’s school’s inaugural Art Exhibition. What a joy it was to be there and I couldn’t resist this photo. It actually summed up just how well I felt that day!

Gratitude – for my connections found through having head and neck cancer.

And then this happened.

Those of you who have been reading my head and neck cancer posts (see here for access) will know I have NEVER found another person with cancer “like mine”. My professor had told me I was “rare of rare” in terms of risk factors and so I kind of learned to understand that was it. Until I was contacted, firstly by a mother, then by her son. This man is another head and neck cancer patient. They had found my story on the Beyond Five site after his diagnosis in 2018. It turned out, once I was contacted, he was not only living in Sydney but we shared the same professional surgical team, the same comprehensive cancer hospital and he also attended Westmead Oral Sciences.

This person, who is quite happy to be found on instagram here, has a more complex and serious version of head and neck cancer than mine. He and I connected via social media and then personally when we got together for a coffee at a place a bit up the coast for him, and down the coast for me.

Our talking and sharing was so good. I know for me, re-telling some of my story was good but I think, for him listening to the ways in which recovery occurred for me may have helped. Nevertheless he has a way to go right now and I am full of admiration for his attitude and his patience. We are both very keen to continue to spread the head and neck cancer message.

Thank you Fergus!

Time for change. Transitions. 

I’ve written before about the transitions in my life (retirement, leaving Sydney, family etc) before and I am now, 2 years 4 months post head and neck cancer diagnosis recognising a shift in my emotions, signalling change. Even good change has its downside. I am a little more emotional as I consider how far I have come. I am also feeling the feels about ageing…and turning 70 in 2 months. Our twosome relationship in our marriage continues to be strong as we navigate life at ‘this end’ together. Family is less connected to us now as caring is no longer required and they are all just about grown up.

It’s of great interest to me to know how quickly the changes occur. Sometimes we may blink and miss them. On the weekend, our daughter and 3 of her children came for Saturday lunch. We even managed some fun games outside. I admit “we” the oldies got tired very quickly. We also did a a bit of a nostalgic look at one’s growing up years. She will be 23 later this year Yikes! Where is that time thing going? Nevertheless, my afternoon’s phone call from my 96-next-January-Dad reminded me we are all going OK.

How is Spring going for you?

Had you heard about head and neck cancer before my diagnosis?

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: 40/51 Share Your Snaps #8. 7/10/19

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Share Your Snaps #5. #LTW25/51. My Head & Neck Cancer Photos 2017-2019. 71/2019.

Share Your Snaps #5. #LTW25/51. My Head & Neck Cancer Photos 2017-2019. 71/2019.

I am choosing to celebrate my two years + since head and neck cancer diagnosis in images that mean much to me as a patient who is using this medium to show:

Surgeries,

Healing,

Gratitude,

Waiting, 

Becoming Well.

Some images may be confronting to you. The nature of having a head and neck cancer is that it is brutal in its ways of eradicating it. Be it surgery (my sole treatments), radiation, chemotherapy or a combination of all. Please consider using my experience to get your mouth checked and to follow up any pain, lumps & bumps in the head, neck, under ear areas….And please think about a donation to my Virtual Fundraiser for BeyondFive where I am a volunteer Ambassador. Link at the end. Thank you. 

 

1. Where recovery began. Chris O’Brien Lifehouse in July 2017 and realities of being home and what my body was doing to heal.

2. My ‘mouth’ reconstructed…and lots of waiting for more surgeries and needing to adapt to changes in my mouth. Surgery in Feb 2018 too.

3. And a 4th surgery…gets me closer to upper teeth but such a long wait with a stent attached inside. Getting my #HNC awareness happening & supporting the first Soup for the Soul event telling my local MP about it.

 

4. Many trips to Westmead as my mouth needed measurements, cleaning of abutments area and so on. I had 2 more surgeries to make my mouth ‘teeth ready.’ My first meeting with Central Coast HNC patients. I had not met another HNC patient till almost a year after my first surgery. And....S M I L E.

 

5. So many reasons to smile, show appreciation & help support the works of HNC groups, meet with Beyond Five, smile at my surgeon and see the realities of inside my mouth, with my prosthodontist telling me all about how this is screwed into the cheekbone and more. Yikes. No wonder it hurts at times.

6. With my recovery continuing my confidence improved.It was great to have some special occasions including a belated retirement medal presentation, meet-ups in December & Christmas at our place & to celebrate my 69th birthday at the the end of November.

7. In early Jan 2019 a quick trip to COBLH to see my surgeon where he confirmed ‘extra skin’ was just that, not cancer…and that threw me for a bit (cancer as a possibility). It was good to think about it and consider gratitude and we celebrated an 18th Bday & our Feb meeting of CC HNC support group had a special guest.

 

8. And the memories of the 2 years before were strong but I gave myself credit for getting through tough times then and now. Meeting up with friends AND authors who are friends was fab! My mouth reality is here too. Bit graphic: Before Cancer diagnosed.

 

9. Celebrated my 2 years since diagnosis with my husband on 17 May and he said ” time for the Apple Watch you’ve wanted”. Recently I’ve helped share another HNC patient’s story for Beyond Five, met my daughter for Mother’s Day, had another CC HNC group meeting at the Cancer Council, saw my prosthodontist, my dentist too…and at the special celebration of Chris O’Brien’s legacy for Head and Neck cancer in early June at COBLH loved seeing my surgeon, Prof Jonathan Clark (who became AM from Queen’s Bday honours the next weekend!) and my HNC Nurse Practitioner Justine. I am so fortunate!!

 

10. My friend updated my image for the blog after it had been showing my way before cancer image for 4 years. Now, that feels more like me!

 

Denyse Whelan Head and Neck Cancer Patient now Ambassador.

Consider a donation of $5 or more to my Virtual Event

For Head and Neck cancer patients, family and friends. This is a website and offers lots to help. It continues to grow and change but with no government funding, some donations by companies in related fields and one part-time business manager, a fund-raiser was initiated in 2018 called Soup for the Soul. Soup is often a food that patients with head and neck cancer can manage and it is comforting.

Soup for the Soul is already live and I have a Virtual Soup for the Soul page here.  World Head and Neck Cancer Day is on 27 July.

Have you shared your snaps today?

Denyse.

Kell also has a Monday linkup here. Join in!

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!

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Head & Neck Cancer. June Updates & WHNCDay 2019. 64/2019.

Head & Neck Cancer. June Updates & WHNCday 2019. 64/2019.

It would be remiss of me not to do an update in June….yes it would!

Having a CT ‘Surveillance’ Scan.

Following my 2 year (and every 3 month) cancer check my Professor determined it was now time for a ‘baseline CT scan’ of head, neck and chest. Ok. OK! It is a funny old thing, this cancer business until you “know” what the results are. There were no visible signs anything would be found…but…

I went. I was a bit nervous. I was finished in 20 minutes. Then I waited for a day, then another. Until I sent an email: already knowing my surgeon had a huge week but hoping he had a result. He did, I was told on the phone by his lovely practice manager: “ALL CLEAR”. Yay.

That week I also visited my dentist – the person who I convinced to remove the bridge & teeth in April 2017 where cancer was eventually found. He was able to check out all that had happened in the past 9 months and clean my remaining 8 teeth. I have an amazing team caring for me.

The First Week In June 2019.

This week marked the ten years since Professor Chris O’Brien, Head and Neck Cancer Surgeon, died from brain tumours. His legacy is so many people who trained and worked with him at R.P.A. and now at Chris O’Brien Lifehouse. His widow Gail O’Brien said recently that without Chris getting cancer he would not have understood the need for cancer patients to be cared for nor treated as well without his vision for a ‘one stop cancer care’ place. He knew that a specialist hospital -comprehensive cancer centre – would happen but he did not know of course that its obvious name would be his in the title.

On Monday 3 June I attended Lifehouse to hear the ‘stories’ of working with, knowing and loving the man called Chris O’Brien. This was a presentation about his legacy in head and neck cancer and as a patient with #hnc as its shorthand name is on twitter, I learned from those who have treated me and who paid tribute to Chris. In fact my surgeon’s final words of his talk were “there’s a little bit of Chris in everyone’s role”.

Later when I got to say hello again to Gail and to thank her for the work of Chris O’Brien, I said even at my most scared – one day after being told I had cancer – when I walked into Chris O’Brien Lifehouse I felt different. It was not a ‘hospital’ as I knew, it was full of interesting places and spaces and caring people. I felt safe and cared for. And still do. Each time I walk in, I look up at the various images of Chris and others and I am very grateful.

Being An Ambassador For Head & Neck Cancer Awareness with Beyond Five.

In June it’s time to ramp up the Head and Neck cancer awareness as we lead into the last week of July 2019 where World Head and Neck Cancer Day is marked with programs, conferences and more on 27 July 2019.

The colours for Head and Neck cancer world-wide are Maroon/Burgundy and Cream.

 

My #HNC & #B5 Lanyard with my card & Ambassador badge

Beyond Five. 

For Head and Neck cancer patients, family and friends. This is a website and offers lots to help. It continues to grow and change but with no government funding, some donations by companies in related fields and one part-time business manager, a fund-raiser began for them in 2018 called Soup for the Soul. Soup is often a food that patients with head and neck cancer can manage and it is comforting.

Soup for the Soul is already live and I have a Virtual Soup for the Soul page here. More about that as we get closer to World Head and Neck Cancer Day on 27 July.

World Head and Neck Cancer Day: 27 July 2019.

Soup For the Soul Event at Gosford: Central Coast Cancer Centre. Tuesday 23 July 2019.

In June I will be working with the local Head and Neck Cancer Support Group at Gosford to prepare for our Soup For the Soul and Head and Neck Cancer Information and Awareness Day on Tuesday 23 July 2019 at Central Coast Cancer Centre. A year ago I went to the first occasion and met people who also had head and neck cancer and were carers and professionals too. It was the first time I had met anyone else with head and neck cancer. Now the people there have become friends of mine.

From 2018 World Head and Neck Cancer Day & Soup For the Soul at Gosford:

 

This post is to also support others around the world who will be part of the World Head and Neck Cancer Day in 2019.

Do support the charities which help with research and awareness of Head and Neck cancer.

In my case, the link in the story about my virtual Soup for the Soul event will take you directly to donate to Beyond Five’s continuing awareness updates and programs to help those affected by Head and Neck cancers.

Thanks for following my Head and Neck cancer stories. This is the link to where all of my Head and Neck cancer posts are as well as those that have been published elsewhere.

Warmest wishes

Denyse.

 

 

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Musings On 2 Years Of Living As A Head & Neck Cancer Patient. 56/2019.

Musings On 2 Years Of Living As A Head & Neck Cancer Patient. 56/2019.

I have written frequently over the last two years about my diagnosis with a rare head and neck cancer. You can find the many posts, and ones where I have shared on other sites here. I keep the posts at the top of my blog’s home page to help any other head and neck cancer patients and their families.

Musing One.

What has happened this month?

I am a memory-keeper and in some instances that can be good, others memories remind me of not-so-good times. As May 2019 drew closer, so did the second anniversary of my head and neck cancer diagnosis. I sensed that I needed to mark it in some ways, and that was through writing starting even before May. I also used my creative side and constructed a big mandala documenting every day since diagnosis.

I did these to help me through and to show, when I shared, what the experience was like for me.

Thanks to this blog, and a facebook page along with instagram I got some caring comments and support on-line which I have always found helpful.

What I have also found is that I am the only person who really remembers the lead-up to that morning on Wednesday 17 May ’17 and then how it affected me afterwards.

I guess, “my” cancer is like any life experience that we have as an individual. It’s mine. Yes, I share. (some might think over-share: sorry!) And my dear husband “knows” the stories as he has experienced them alongside me. However, he is  was my carer and now that I am as independent as I can be, I am “the loved wife” in our long marriage. That’s great.

On my 69th Birthday 2018

Musing Two.

How has the lead-up to the anniversary been?

I thought it was good. It was like box-ticking and I felt good doing that.

Remembering what I experienced with the tests before the diagnosis. Ok. I remembered but did not over-think it.

The weather and the dates changing on the calendar also reminded me but again, I was feeling pretty good.

I had two hurdles, if you will, and they were the visit to my Prosthodontist on May 13 and to my Head and Neck surgeon on May 21. These were of concern in a way because at my last visits to each (three months earlier) there was talk of a possible fifth surgery to ‘fill out the top of my mouth.

I can tell you now, dear reader, the prospect of the surgery did not concern me nearly as much as the recovery from it…the LONG time with no top teeth and then more time with getting the mouth healed enough for a prosthesis. I have just had 8 delightful months being able to EAT again and that would be tough. Of course, the smile would change…ok.

December ’18

Musing Three.

What actually eventuated.

Visit to the Prosthodontist.

Dr Deshpande asked me about pain levels. Pain comes and goes in my mouth where it has all been reconstructed and I told him a few weeks earlier it was significant. However, as it settled I did not need to call him. I was much more confident about those calls than I ever was in 2018. He examined the upper prosthesis, the gums, and where the abutments are in the gums. Yes, there was some tiny more skin growth but nothing to be concerned about at this stage.He did a small clean around the abutments and told me what I had been doing every day was going very well and the gums were in good health. Phew. Using the waterpik twice a day was a key element. He showed me around the inside of my mouth and his nurse videoed it as best she could as he explained it all. He is so patient and very thorough and professional. After taking lots of close-ups inside my mouth he told me his view that my surgeon would be unlikely to want to do more re-construction because the skin area of concern back in January/February had not changed. Back for my check up 16 July.

Fistbump! Photo of “us” knowing each other in this professional setting for 2 years.

 

Visit to the Head and Neck Surgical Team.

This was on Tuesday 21 May. Both he and his nurse were delighted to see me and it wasn’t just because I brought cupcakes I had made. They can see a different me emerge I guess, and someone who has taken on an Ambassador role to work towards helping head and neck cancer awareness and both Professor Clark and Sr Froggatt are foundation members of Beyond Five. Again my mouth was examined and as I recalled the words of my last visit “I am a cancer doctor, so I AM looking for cancer” and it all seemed fine I was OK. He decided any choice about more surgery would be determined by what happens inside the mouth. “Could get worse, better or stay the same”. And now would not be in my best interests to do this. Phew. However, I also learned that the interval till my next visit is 4 months, not 6. And that I will require some CT scans as baseline ones. This was a wee bit threatening to my equilibrium but as I do, I went along following instructions. Before I left, I asked some questions about my mouth: here are the answers.

  1. the tightness will remain up top as so much more has been added for the re-construction than a normal mouth would have
  2. sniffing is part and parcel of having the nasal area invaded quite a few times…sniff and manage!
  3. dry top lip probably from not being able to seal off my mouth
  4. need for a new upper prosthesis? “If it ain’t broke, you don’t fix”

Thanks Cate for all your reassurance and hugs too!

Then there was this. “A Photo with Denyse with her Badge on.”

Hugs and farewells and I will be back to Chris O’Brien Lifehouse to have a check up on September 24.

Musing Four.

When having cancer is a reality that I am reminded of every time I visit Sydney for cancer treatments.

Westmead.

Where I see the prosthodontist. I lived in western Sydney and had never been to the Dental part of the hospital until May 24 2017. Since then I have been 37 times. Each time could be lengthy and required patience from me in spades. However, there were some visits that were emotionally bumpy and Dr D and O handled my state of health brilliantly. When I was there recently, the lady of the front desk said “Denyse, we are like family”.

That was lovely. I would not have met so many kind people there without a rare mouth cancer, and where the expertise was right there. Someone working alongside my surgeon in each surgery. Wow. Talk about fortunate.

Camperdown.

Specifically Chris O’Brien Lifehouse, slap back in the midst of Sydney’s major health precinct on Missenden Road. Sydney University on one side, Royal Prince Alfred on the other, and new buildings mixed with the historical on either side.

This is where I first met my professional team one day after being told I had cancer.

I had my husband with me of course. He was (and is) the patient man by my side. So, I recall, being there for the first time, seeing this amazing purpose-built cancer centre which had come from the vision of Dr Chris O’Brien who was on our telly as part of the reality series R.P.A. Such a professional and friendly head and neck surgeon with heart. I sensed I was in the right place WITH the right people straight away. Finding out later that my surgeon had trained under Chris O’Brien made me feel even better about what was ahead. And so Lifehouse was where I had the first BIG surgery and stayed for 10 days in July 2017, then further day surgeries in November 2017, February 2018 and May 2018. Follow ups too mean I have been there 12 times.

Musing Five.

IF I did not have cancer here’s what I may have missed in my life….

  1. the opportunity to take on new information and run with it. I learned I can deal with more than I ever imagined.
  2. getting to know people from the health fields who amaze me with their professionalism, the wealth of knowledge, their compassion, their skills and their genuine humanity
  3. being able to recover as quickly as I did from the decline in my emotional health which was ‘strangling my enjoyment of life’ from 2014 to mid 2017
  4. meeting people from all walks of life: in real life and on-line, a facebook group in New Zealand is an amazing space,  who have also been diagnosed with head and neck cancers: Yet, I still have not met anyone that has had mine exactly: Squamous Cell Carcinoma of the Upper Gums & under Top Lip: no risk factors of smoking or alcohol: rare of rare ME.
  5. the many ways in which I could grow and change to become ‘the Denyse’ I wanted and needed to be again: strong, positive, confident
  6. sharing my story of this cancer and being able to offer help when asked to others with head and neck cancers
  7. becoming someone with a role to play in terms of education and awareness of head and neck cancers working with Beyond Five. The charity to support patients, carers and family members with information, videos, print-outs and connections to local support groups as those affected with head and neck cancer need support “beyond five” years of the traditional
  8. to take more time to actually enjoy what is rather than be longing for what’s next. I add, this is me as a definite “w-i-p” because it requires constant reminding from me to me
  9. a greater appreciation for those who have been part of my life and have added their emotional and other support to me over the internet, phonecalls and visits, along with cards and gifts. I have been spoiled!
  10. to take what I have experienced and give back. I will return to Chris O’Brien Lifehouse on Monday 3 June 2019 to be in the audience to listen to my professional head and neck cancer team talk of what working with and learning from Chris O’Brien was like. This week marks 10 years since his early death due to cancer.
  11. to look at the posters and information about how Chris O’Brien Lifehouse came into being and thank the governments of the day for helping it happen. Chris was well enough to know it would be constructed but his wife Gail took over his role after his sad demise.
  12. becoming part of the community at Chris O’Brien Lifehouse even though I am not there much physically, I donate materials to the art program, I wrote a blog post for their website and I have been in a couple of other site’s telling my story including Beyond Five.

 

Musing Six.

Blogging & helping others works for me to manage my emotions relating to cancer.

I have a great group of on-line supporters who have helped carry me through this story or journey as I call it. I prefer not to use war-words like warrior and ‘beating cancer’ as I also know not everyone does. I have already known of two young women die in the past two months from cancer. Not head and neck but cancer. So it does ache to even talk about that. I know though that we have many people helping with fund-raising to support cancer research and I won’t name any others than these as they are close to my cancer-heart.

The Big Hug Box. I started making some bookmarks for Lisa to include in the Big Hug box back in 2018 and loved contributing to her charity started because as a young mum just diagnosed herself with a rare cancer, she knew patients like her could use a BIG hug. For more about Lisa’s work go here.

Beyond Five. For Head and Neck cancer patients, family and friends. This is a website and offers lots to help. It continues to grow and change but with no government funding, some donations by companies in related fields and one part-time business manager, a fund-raiser began for them in 2018 called Soup for the Soul. Soup is often a food that patients with head and neck cancer can manage and it is comforting. Soup for the Soul is already live and I have a Virtual Soup for the Soul page here. More about that as we get closer to World Head and Neck Cancer Day on 27 July.

Writing my story has helped me manage emotions, experiences and responses well. I am indeed going well two years AFTER my cancer diagnosis. Thank you for being here to read about it.

Denyse.

 

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Changing Me. 19/2019.

Changing Me. 19/2019

Changing me is I now realise ON-GOING!

It has been many years as I have mentioned in previous posts of living overweight and obese that has given me a skewed view of my image. My most recent post is here.

I am doing what I can now, to approach my thinking with:

  • kindness
  • self-care
  • words of encouragement

and seeing that thoughts are not always true.

I already use the Calm app for meditation each day, and often in taking a time-out will be mindful in whichever are my circumstances as I learn to be present and here….in the now.

Eating mindfully (and planning to eat) is helping me in these ways:

  • I do not follow those rules of ‘only concentrating on one food and mouthful at a time’ mindfully in eating.
  • I do now examine and observe my inner feelings (physical and emotionally) about the why and when of eating.
  • I am getting so much better at this!
  • I am also recording what I eat via a free app and it is Australian foods-based and gives me an idea of how well I am doing.
  • As a no-diet person, this feels good to have some control but also to eat within the generous range I have allowed myself.
  • I am using my fitbit to slowly up my steps each week by 500 steps  from a base of 6000.

On Tuesday 19 February 2019 I had my 3 month cancer check, and my Professor Jonathan Clark was delighted to see no reason for further surgery (yay for now) and when I mentioned my weight gain since ‘teeth’ he said “that’s good.” Oh, he means that is healthy and I am doing well! Of course now I get it…but as I chatted with his clinical nurse consultant who is just the best for me, she and I agreed that moving more is a good idea!!

 

On 23 February 2019 I posted this image and the words on Instagram.

One Year On.

As a person who was overweight to obese for decades, losing weight pre-cancer diagnosis & post cancer surgeries has been a mental issue.

I realise to others I look well, healthier and ok now.

I acknowledge I was 5kg+ lighter a year ago & pretty darned miserable at times because of eating restrictions due to 4 cancer surgeries & reconstruction inside my mouth.

I do think I did the best I could at the time to nourish myself but acknowledge how much I missed:

*chewing

*crunching

*biting

*savouring

FOOD from a variety of offerings! My shopping for over 14 months took me away from foods I missed biting, chewing, crunching & savouring.

From 21 Aug 2018 this changed. My upper prosthesis was fitted. It was novel to try the foods I’d missed: cheese on a cracker took minutes to eat. Then over time as my mouth & my brain handled the different foods better it was/is great.

Then, about a month or so ago the creeping up of my weight on the scales (once a month weigh in- years of measuring my worth via the scales is a horrid memory) was noted & I “have” to admit I knew what to do IF I still wanted to:

*like wearing my new clothes

*feel comfortable in my body

*enjoy all aspects & variations of foods I could now choose from

It was time to choose a better balance between foods that nourish & are enjoyable & to increase my movement each day.

This mindful eating plan I’ve made up is working for me.

I am now understanding the WHY of how I used food to deal with emotions & that it does not work like that MAKES so much sense!

Keeping myself active by changing my approach to movement. Upping the steps weekly by 500 a day,  starting at 6000 a day.

Most of all I want to add is how grateful I am to be well after nearly 2 years of oral cancer & that I can continue to learn best how to care for myself emotionally & physically!

Changing the voice in my head…. the inner critic…to low volume or mute whenever she begins to shout!

So have you ever taken steps to change you?

Denyse.

Joining with Min for Zen Tips Tuesday here.

Finding a place with Sue and Leanne here in MidLife Share The Love on Wednesday

and, of course, Lovin’ Life with Leanne here each Thursday.

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On Learning About Eating. Part One.10/2019.

On Learning About Eating.  Part One. 10/2019.

I have been eating my way through life for over 69 years now. As anyone does.

Yes, I “am” the baby. I also know my grandmother (left) and Dad struggled with weight issues too.

But, I still do not understand much about eating ….unless it is:

  • diet-based (fail)
  • managing to eat enough for nourishment after cancer surgery in my mouth (pass/fail/maybe)
  • how to moderate my choices for more than a day or so ( pass or is it fail?)

Why I am I writing about this topic?

It has puzzled me (and I am thinking many who read this) why I ate. Because I know it was often not based on sound nutritional practices and in fact was in some way disordered. I do not have an eating disorder but I do/did eat like this:

  • some secretive ways – late at night or when no-one was around
  • using stashes of chocolate to soothe me
  • having take-away food in the car

I have written a long post here about my “weight” and how I played “possum” about it. No-one could (or dared) mention it yet I was/still can be ashamed of my behaviour.

Since my cancer surgeries where I lost more weight through not being ABLE to eat much, I did enjoy the unexpected outcome of buying lovely clothes to fit me and to show my newly acquired physique…thanks to oral cancer…

And that was lovely and I will always appreciate that time in my life from October 2017 to around the same time in 2018.

Some examples of my pre-upper prosthesis meals. Mind you I cannot face any of these as a meal now I am post-teeth.

Then I began to eat more food from late August 2018 on. Because I could. Oh and it tasted so good, the senses were in over-drive and the fact that I could now BITE, CRUNCH and CHEW was amazing. This happened because “I got my upper prosthesis”. Yay.

And my weight has crept up. What did I do? I was glad I could eat from a wider (pardon the pun) range of foods but I sensed my retreat into anxiety about my appearance and that it would become noticeable to others. Early in 2019 my husband could see my emotional state had become less content since my early months of “having teeth” euphoria and we had a very frank discussion where I confessed I was worried I had not learned anything new about eating despite the privations of 14 months with no upper teeth. Because of cancer. If you want to read about my cancer, here is the page with the posts.

Organised and planner me took over for a while and this is what I came up with since that chat:

  • weigh-in once a month
  • focus when I go out on coffee part not the add-on of a food such as donuts, date loaf or muffin
  • eat more regularly: make specific time ranges for three meals a day. Add snacks.
  • plan groceries around my meals (my husband and I eat a shared meal a few times only in a week)
  • resist late-night snacking in bed by allowing hunger to be felt
  • speaking kindly towards myself in any times of difficulty (this is such a different me to old, punitive me)
  • look at the facts about my appearance rather than the perceptions aka mind-based ones
  • move more each day – it has been very hot so it has been better to stay home than to get outside BUT I can walk more when I go to a coffee place in a shopping centre

Then I heard about Mindful Eating. As someone who has practised mindfulness as part of my cancer recovery time along with when I am faced with anxious and scary times, I was very interested. So I bought the two books AND am now listening via CD to this program.

I KNEW I ate for more reasons than stomach hunger! The author who knows from experience of both an early eating issue, is a doctor and a mindfulness practitioner has opened my mind! I am doing some of the exercises and I now know I (we) eat to satisfy:

  • eye hunger
  • nose hunger
  • stomach hunger
  • mouth hunger
  • heart hunger
  • mind hunger
  • cellular hunger

The tracks on the CD are listed here. I am a work-in-progress of course.

Here’s what I am learning so far:

  • I eat visually: eyes it seems come first BUT
  • I also eat by the stomach so I recognise the feelings of fullness
  • I KNEW I ate from mouth hunger but had no idea why. It explains how much I (we) miss chewing, crunching, savouring and tasting….as I did in my 14 months after cancer surgeries.
  • I need to care for and about myself around this issue of eating. Not say anything negative about what I am doing. The inner critic needs to be back in her place. Doing well so far.
  • I need to eat at regular intervals but to also feel the stomach hunger too. I am very much into the early stages of making things around eating work for me but am proud now that I:
  • meal plan – and include some protein at each main meal
  • snacks are well & truly covered and are linked to helping my meet my mouth hunger, visual hunger and heart hunger
  • can look at my image in the mirror or photo and be proud of the body that has helped me overcome cancer 
  • am learning lessons about eating I wish I had known a long time ago

29 Jan 19 : Writing this post after going out for coffee and groceries.

Part Two will be an update. This is most definitely a project in health and head and neck cancer recovery worth taking my time over.

Is eating something you struggle with?

How do you make eating choices?

I would love to know more in the comments!

Denyse.

Joining with Sue here and Leanne for the Wednesday link up MidLife Share The Love.

 

 

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Second Six Month Check-Up…With Myself! 3/2019.

Second Six Month Check-Up…With Myself! 3/2019.

What is this six month check-up about?

It is about my assessment of my physical and emotional health for the second 6 months of 2018.

Oops it is already 2019 I know but I have just scraped in I believe.

Here I go, following on from the first six month check-up with myself, here.

It’s no secret that when you have a cancer diagnosis that check-ups are both regular and scary. Regular ones are like this protocol for my head and neck cancer:

for the first 2 years: every 3 months. I have completed one year and really only had ONE formal check up because…I have been for surgery with my Professor 3 times post initial big surgery, and my prosthodontist is checking inside my mouth at all of my very regular visits. 

for the next 3 years: every six months. This assumes no symptoms in between checks. On Tuesday 8 January my mouth needed a check as skin was growing more than it should. I was relieved to know it is not a cancer recurrence but I did get news that more reconstructive surgery could be ahead. I am still absorbing this news. 

Let’s get started:

July –  December 2018.

My Contribution to Our “2 Person Retired” Household.

  • cooking my meals which can be eaten with little chewing, with good nutrition & taste until I could eat in a more normal way
  • cooking more meals that we can eat together as I got my upper teeth prosthesis we get to do this
  • making cakes & biscuits. As I can eat cake & now some biscuits, there is greater variety for us both. I still have a stash of small iced cakes for me and un-iced ones for my husband to which I now add (at his request) sultanas and walnuts
  • cleaning the floors that require vacuuming each fortnight – oh so necessary but thank goodness for the battery-charged stick Dyson
  • cleaning my en-suite bathroom and all surfaces of shelves, sets of drawers etc in the house
  • ensuring all plants outside are watered and cared for – watering, moving them around as need be and pruning
  • grocery shopping now my full responsibility as there is a very convenient local Woolies. My husband picks up some needs for himself at the local IGA.

My Self-Care Routine.

  • I would like to think I have this down pat. I do not. I sometimes do too much and wonder why I am tired or tetchy.
  • I kept the same first sentence as last time. I have made it a priority to recognise my fatigue before it really hits and I also want to be less focussed on social media for a time each day.
  • Even though I was someone who loved her busy-ness in work and then when caring for our grandkids and part-time teaching I now know I am better with stretches of time that are mine
  • I am getting better at my ‘going to sleep’ times and continue listening to some ‘sleep stories’ via my Calm meditation app
  • I know for sure I am not in a race for self-care or self-improvement and I do think marathon rather than sprint much more than I did 6 months ago.

Love sent to me by a friend. A beautiful mandala crocheted blanket: perfect in the cooler months.

My Care For Others.

  • I am getting better at this one!
  • When I was recovering from cancer surgery in those months from July to November 2017 my physical restrictions and mental tiredness meant I could not do much at all
  • I now know the value of caring for and about others does not mean I have to fix anything 
  • I have stepped much further away from my “must fix everything for everyone” self.
  • I need reminders from myself about this and usually I ask myself the question “who am I doing this for?” If the answer is to make me feel better I no longer do it.
  • It is essential though, to know each of us is connected to the rest of the humans in one way or another and to share what we can for the common good
  • I believe this means my people pleasing has diminished even more in the past 6 months by setting boundaries
  • I know the boundaries for me and that how others are behaving might relate to their boundaries. This is big learning life lesson for me.

With Naomi, our property manager, on the Tenants Awards’ night where we won Tenants of the Year “Gratitude”.

My Physical Appearance Each Day.

  • In  2018 over time my physical appearance has taken on a new dimension with new & colourful clothes which suit me and fit well as I continued to #dresswithpurpose each day
  • It is also something I look forward to as it is part of the way in which I self-care to take myself out for a coffee.
  • I continued having my photo taken and into 2019 it will continue
  • I am keeping myself honest about my appearance too as I know my weight has increased as I can eat not only more easily but from a greater range of foods
  • As someone who was very overweight for decades  – read about it here – I can still become a little concerned about the weight creeping on but am now seeing myself as being healthier as I do eat better than I ever did.
  • Instead, I took a challenge to dress well each day quite seriously. It was a self-created challenge. I am not going to stop it as I know it helps me each day.

With this man by my side “we” can do and be all we need. Love is our relationship that will celebrate 48 years of marriage in late January 2019.

Summary.

  • I am happy with many aspects of my six month review as I know I feel better emotionally and physically
  • I have taken on board some disappointments relating to my cancer surgery and the on-going work inside my mouth and I trust my professional team wholeheartedly
  • I am glad to have found a support group for Head and Neck Cancer patients on Facebook and it is making a difference to have a kind and safe place to share stories.
  • My confidence about myself and my ability to re-join the world more widely was proven many times as I drove myself to functions where I knew no-one and socialised, and met up with friends for coffee and cake
  • I also was finally recognised for my service to students of N.S.W. Public Schools in December and that closed a gap in the circle that had been messy in terms of my almost 40 year career.

Met fellow blogger and Central Coastie Sanch for morning tea.

 

I believe I have allowed myself, even writing this, to be vulnerable. I am taking braver steps each day as I not only recover from cancer but learn to live well as a woman who will be 70 this year!

 

Have you ever considered a ‘check-up’ with yourself?

It could be a good thing for you to ask yourself “how am I going?”

Thanks for reading.

Denyse.

Joining with Sue here & Leanne for MidLife Share The Love Linky on Wednesday – the first one for 2019.

Joining in with Leanne here  on Thursdays for Lovin Life linky.

Hello everyone!

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November Notes #5. 2018.125.

November Notes #5. 2018.125.

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

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

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

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

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

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

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

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

And then more:

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

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

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

This resonates with me:

Types of personal growth

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

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

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

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

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

Please share!

Denyse.

Joining in with Leanne for Lovin Life linky here.

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