Wednesday 23rd January 2019

No (ONE) Word Of The Year For Me. 6/2019.

No (ONE) Word Of The Year For Me. 6/2019.

Dear Readers,

In my earlier post here, I gave a rundown on my success/lack thereof with recent “words of the year”. I said I would be back with what I have in 2019.

Here I am.

I have no (ONE) word of the year at all. I have many and I need to share the story more.

Thank you,

Denyse.

If you have ever wondered why it is hard to come to a decision about something? I have been like this with the notion of a word/intention for 2019.

I have asked myself MANY times why and the response is usually because I want to cover all I need for me in 2019.

This is impractical so I will share the range of words here in this post.

Last year as I went through two surgeries for re-construction and re-modelling inside my mouth after my oral cancer diagnosis in May 2017. In doing that I had a significant need to remember to be B.O.L.D. that is: Be Brave Optimistic Loving & Learning Determined Denyse. It was (and still is engraved on a small bracelet chain I wear day and night. I could ‘touch it’ or read it to remind me of how I wanted to be even in the hardest of situations. Some of these included being told a 4th surgery was necessary and would be a much longer time for me to wear a stent inside my mouth to allow the space to stay open.

I kept my practice going of wearing an outfit, having a photo taken, going out for a coffee and sharing what I got up on Instagram and the on-line support was a boost I always appreciated.

Of course, I did not only rely on the bracelet and already had so much knowledge and experience from the even more emotionally hard days well before my cancer diagnosis. Even though I did not seem to be able to live as I would have liked then I was sowing the seeds within. Many of these titles were listened to in the car and in my then art room as I made patterns and mandalas (another coping mechanism for my anxiety pre-cancer) and meditate along with some of these mindfulness teachers.

I believed I was going well in many aspects as I could face the hard things which I wrote about here and here. I also had greater understanding of what it is to be human! We are not alone at all. My meditation practices helped. Not always. But anything which slowed down my critical voice and over-active mind was a good thing!

In August 2018 the event I had waited over 14 months for occurred. I had the new upper prosthesis of teeth screwed into my new jaw and gums. At last, I could eat more again! So exciting. It was (and still is) and work-in-progress as the mouth I use to eat is so very different to one that has natural teeth attached to a natural jaw.

3 months difference! I like to recognise special days

But I loved trying new foods. Until in the last few months my weight changed. Up. I am continually torn between eating for fun/enjoyment and for nourishment. Sigh. So, not being disrespectful to my professional team at all, I need to take personal responsibility for my eating. I am not 100% confident with that yet (again!) as I have had issues with being very overweight (related to using food for needs other than hunger) and I confessed all that here.

I value honesty and truth-telling and I know some people who read here tell me that they think I am being brave. Well, that maybe the case but I cannot hide. I tried that a long time ago and it does not work. So I must accept my truth is that I am vulnerable and sometimes look to food to be a salve for what I cannot fix. I actually do not want to be like this anymore. I am needing to find the words to help me through and they seem to be based in:

  • self-care
  • self-kindness
  • self-compassion

But even before I can do this well, I have to accept what my ageing body is doing (70 this year) and normalising that is hard! I thought managing cancer was all I had to do. Nope.

  • I have to manage my IBS symptoms when and if they appear,
  • I need to be aware of my regular skin checks, eye sight (I had a wee scare late December which turned out to be floaters),
  • my feet cannot embrace many shoes so I need to care for them better
  • manage my weight. Oh I was so hoping I would not HAVE to go there
  • acknowledge that some foods add weight & were what I used to calm me then I need(ed) to be able to embrace those emotions that are stress/anxiety/worry based …
  • and, in owning up to them, let them arrive, and let them go of their own accord.

This is what I have also learned in my mindfulness, meditation, podcasts and more.

So many wonderful people speaking on these CDs and each has helped (and continue to help) me.

Calm is my latest and the each 10 minutes has something of value to me to shift my attitude and be more at one with myself.

A word popped into my head two weeks back as I considered this topic (where were we….ah, Word or Intention!) and INTEGRATE stayed. I now have this word on a second bracelet and it may look a teensy bit over-done but as a visual and sensory reminder, with the tiny heart bracelet in between I reckon they will help me return to calm(er) waters.

The bracelets don’t stay like this of course but each faces me so I can see them and remember!

What now?

I continue to face what I need to do to live honestly and to embrace the emotions I dislike.

  • To this end, and because I had been learning lots about self-compassion, I have just started on the Mindful Self-Compassion Workbook by Kirstin Neff PhD & Christopher Germer PhD. I shall share progress on this in future blog posts.
  • I remain committed to something creative each day and am exploring different ways of using my small and medium art journal and finding that excellent. I am returning to mandala making. I have, to a greater extent, ruled out Tarot cards. I just am not in a headspace for that right now.
  • I think too, that I have been pretty distracted since Tuesday 8 January 2019 where I had an unexpected mouth check as more skin was growing and it came as a shock that it was done in case it was cancer. THAT in itself is another post. I had pushed cancer to the back and I was jolted back to reality when my surgeon said “I’m a cancer doctor”. Oh.
  • He also mentioned the possibility of further and extensive in-mouth surgery if the lip continues to have reduced room between it and the teeth and when he outlined what they might involve, I was pretty shocked. HOWEVER, nothing is decided yet but it’s there, hovering.

Every 7th week now on my Monday link-up the optional prompt will be Self-Care and I have added this for me and for anyone else who wants to share their self-care. 

I have written a lot and still there is no conclusive one word or an intention  but this is how it is for me in January 2019.

Thanks for reading!

I hope it’s been of interest to you.

It has helped to write it out.

Denyse.

Linking up with Sue here and Leanne on Wednesdays for Midlife Share The Love link up.

On Thursdays I link with Leanne and the crew at Lovin’ Life here.

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Head & Neck Cancer: “Beyond Five” Ambassadorship.2018.130.

Head & Neck Cancer:”Beyond Five” Ambassadorship.2018.130.

Last week I wrote a post called Farewell and Hello. It was pretty long so I stopped at Farewell promising to be back for Hello. Here we go!

Regular followers here know that I was diagnosed with head and neck cancer (squamous cell carcinoma) in my upper gums and under the top lip. The whole story is here, in posts, from the day I was told until the recent post on adjusting my eating requirements when I am out of the house.

Hello, I am now a Beyond Five Ambassador!

How this came about was partly after this day in October 2018 when I was back at ‘my’ hospital Chris O’Brien Lifehouse, but I had offered earlier this year if there was any way I could help spread the news about head and cancer awareness I would like to do so. I had already been sharing the work of Beyond Five here on the blog for World Head and Neck Cancer Day 2018.

Following that day, the Board of Beyond Five met, Sr Froggatt and Professor Clark are board members and Nadia Rosin is Manager, Business & Communications,  and I then received a formal letter of invitation to become a Beyond Five Ambassador.

Role of Community Ambassador

  • • Share your personal head and neck cancer story for use in Beyond Five communication e.g. website, social media portals etc.
  • • Raise awareness of Beyond Five through family, friends, other personal connections.
  • • Where possible, attend events e.g. patient support group meetings, education days to help raise awareness of Beyond Five.
  • • Support Beyond Five grant applications where relevant e.g. as a consumer representative.
  • • Provide feedback to Beyond Five to help us improve and develop the way we work.

About Beyond Five.

Background

Beyond Five was established in December 2014 and is Australia’s only not-for-profit organisation supporting patients with head and neck cancer, caregivers, family and health professionals.

Beyond Five was established to provide evidence based, comprehensive, easy to understand and easy to access information to everyone, regardless of where they live.

Beyond Five is the first organisation in Australia supporting patients and their families through their cancer journey, from diagnosis to treatment and life after cancer.

Mission

Beyond Five’s mission is to improve the quality of life of everyone affected by head and neck cancer through education and access to support and to raise awareness of head and neck cancer nationally. We are committed to working collaboratively with all specialties across Australia to achieve our mission.

 

I have joined the inaugural Ambassador, Julie McCrossin and Marty Doyle too. Their stories and mine, can now be found here on the Beyond Five site. There will be more ‘thinking time’ for my involvement and what form it may take as everyone is going to be on a break soon. We are getting together in February 2019. I look forward to helping where I can especially now I am post almost all of my cancer treatments and now in ‘check-up and check-in’ mode.

I know that I am keen and ready to help others learn more about head and neck cancer as it is not well-known. In fact I had no idea you could get squamous cell carcinoma inside your mouth (and other areas of the skin inside the head & neck region, till my day of diagnosis in May 2017.

And here we are sending Season’s Greetings.

I wish that no-one had cancer of any kind, of course, but the fact of life is we do. I want as many do, to help pay back the time and effort and research that has gone into the amazing surgeries and mouth reconstructions I had. That I can smile and eat well again is testament to the wonderful work of my team and their integration of allied professionals too. I have written posts about how many helped get me well again. Now, it’s onward….and to say I am glad to be an Ambassador for Beyond Five is an understatement. It is an honour and a privilege to be in this new role.

I want to do the role justice, and help others as I too have been helped.

Thank you to the Board of Beyond Five for entrusting me with this role as your Ambassador.

Denyse.

Joining with Sue and Leanne here for Midlife Share the Love and with Leanne here for Lovin Life link up.

 

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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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My Bookmarks & The Big Hug Box. 2018.121.

My Bookmarks & The Big Hug Box. 2018.121.

Regular readers would know I have a ‘thing’ for creating with paint, markers, crayons and pencils. In fact, this creative side of mine has bloomed in the past few years. I made a pact this year to create daily and I did until about a month ago. Here’s the post about my creations which focussed mostly about mandalas. I will come to the bookmarks soon!

I am someone who has learned to enjoy the process of creating as well as the product. Many of my mandalas have been given away or made into coasters and placemats after laminating.

Before mandalas became a thing for me, I created patterns in grids, patterns in free form and more. I just get/got a lot of relaxation and meditative experiences through taking my time, letting my mind flow and enjoying the sensations of adding colour to blank pages.

Then: I still am a product-person too! I began to make bookmarks using strips of the patterns for friends and family. I laminated them and it was pleasing to see them being used and appreciated by others.

But: I ran out of people to give them to…

Until: I heard of the Big Hug Box. Lisa Greissl, a cancer patient herself 3 years ago, wanted to help ‘give back’ and to raise funds for cancer research. I followed Lisa via the Big Hug Box and could see how special her “boxes of hugs via gifts and more” were. I wanted to help by contributing and asked Lisa would my bookmarks work in her gift boxes.

Her response was as joyful and positive as she is. YES. Emphatically YES. A bright, hand-made bookmark would be a great addition.

I loved my skills being helpful to others with cancer. In fact, I was stoked to see an Instagram photo from a friend I met via blogging…who sadly has cancer…but had a Big Hug Box given to her and one of MY bookmarks was in there. I felt like I had contributed to her HUG.

Above is a selection of my most recent delivery to Lisa: 200 bookmarks. I have probably donated well over 100 before this!  I admit I now streamline my making.

  • Firstly, the art is cut into suitable size,
  • I have sheets of coloured card which I cut to match The Big Hug Box’s dimensions. I need, in future, to make slightly smaller ones for the Random Hugs of Kindness Boxes.
  • I paste my patterned paper on one side of the card
  • On the other side I add a now-signature Owl stamp at the top of the bookmark and a little quote that is on the bottom
  • Somewhere along this side of the bookmark I write an individual “My Bookmark”, later I embellish that side with some dots of paint.
  • On the front, where the pattern is, I often add a star, or heart symbol sticker and then as Lisa suggested, a little message from me on a sticker: Hand Made For You By Denyse Whelan Who Blogs Here: denysewhelan.com.au
  • Then I place 4 or 5 into an A4 laminate sheet and start the slow but careful job of feeding them in.
  • Lastly, over time again, I trim each card and the group becomes  individual bookmarks.

I do take a few days to a week to make a group of bookmarks. I recently made 60 on top of these at the request of the Central Coast Cancer Centre Head & Neck/Lung Nurse who is part of the group I meet with once a month. She will be adding them to new patient packs.

One reason I continue to make these is that I can share my love and care for another person affected by cancer as I was. I do make a definite and  conscious decision as I create each one to send loving kindness.

Update!

A little while back, Lisa, who lives only 5o minutes away was planning a “packing of Big Hug Boxes and Random Acts of Kindness Boxes” morning at her place and I accepted her invitation to attend. There were a few of us connected to Lisa via friendship and/or cancer. I even got to meet the creator of Colour Me Well who asked me to supply some of my mandalas for cards she was selling to patients.

It was a heart-warming morning, and at the completion, we had some photos taken. Lisa then went to Chris O’Brien Lifehouse on Monday 12 November to deliver 40 boxes, ready for gifting to cancer patients, and donated by various groups and individuals. I was thrilled to play a small role.

There is much to be said from helping our fellow humans and connecting and for those of us with cancer even moreso. Do check out Lisa’s wonderful work on The Big Hug box and she is now partnered by Cancer Aid app (another start-up from Chris O’Brien Lifehouse). Do share the information about the Big Hug Box widely…it helps all of us.

Lisa’s story on Channel Tenhttps://tendaily.com.au/news/good-news/a180530vxb/cancer-survivor-gives-back-with-the-big-hug-box-20180530

Thank you Lisa for your initiative and hard work. I know it’s for the love of it too but with a young family and working, it is a lot that you do for many!

Denyse.

Joining Kylie for I Blog On Tuesdays here and Sue & Leanne here for Midlife Share The Love linky on Wednesdays.

 

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November Notes #2. 2018.116.

November Notes #2. 2018.116.

This month, 5 years ago, a unique and amazing event occurred.

I did not know how much this event would affect me 18 months ago.

Chris O’Brien Lifehouse: Comprehensive Cancer Hospital opened in November 2013.

I am incredibly grateful for the vision of both the late Professor Chris O’Brien OAM and his lovely wife Gail, AO.

Chris, who was to die from brain cancer in 2009 before the hospital started, had a vision based on his experience as a Head and Neck surgeon and then a patient with cancer. That there needed to be a place like a ‘one stop shop’ for cancer patients and families as there was so much to manage when someone is diagnosed with cancer without more added to the stress such as visiting as number of different places for treatment.

For Gail, on receipt of her AO said however, the award is a reflection of the community of which she feels lucky to be a part. “I could not be more proud of our independent, benevolent hospital and the care we give our patients,” she says.

Her words are a tremendous reminder to all of us of the importance of Chris O’Brien’s mission. With this award we are encouraged to strive for the best at all times, and to continue to turn your support into a positive force in the fight against cancer.

A chance meeting here I had longed for. I met the late Prof Chris O’Brien, Gail.

Even though I cannot be there for this week of Open Days and Celebration, I am there in spirit.

From my first, scared and very tense visit of over 2.5 hours on Thursday 18 May 2017, through to major surgery on 6 July 2017 and my excellent recovery in ICU and on the wards, through to check-ups and tests and then for more day surgeries on 15 November 2017, 6 February 2018 and 16 May 2018 it is always a rich and inclusive experience to be at Lifehouse. Of course, I have been back for follow-ups and to chat with people I would now call friends. Who knew that would be how I would interact with a hospital and having cancer! Not I!

This one session, held on Monday 5 November when I have to be at Westmead  to see the prosthodontist, features my Head and Neck Surgeon, Professor Jonathan Clark who was trained by Professor Chris O’Brien. How fortunate am I!

Jonathan said ‘he was stoked’ about how my teeth/mouth worked out.

Eventbrite for Organizers's photo.

NOV5

Innovation and technology in cancer surgery

Public

More here about the week of celebration, innovation, care and sharing from Chris O’Brien Lifehouse.
My little collage and tribute to wish Chris O’Brien Lifehouse congratulations on 5 years of helping patients like me!

Do you know of the great work done by the late Professor Chris O’Brien? He became, as his family remembers, the unexpected ‘star’ of the long-running T.V. documentary called R.P.A. That’s short for Royal Prince Alfred – the hospital opposite Chris O’Brien Lifehouse.

Thank you to you all at Lifehouse!

Denyse.

Joining with Leanne who also  knows a lot about the work at Chris O’Brien Lifehouse, here for Lovin Life linky.

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I Want This. 44/52. #LifeThisWeek 2018.111.

I Want This. 44/52. #LifeThisWeek 2018.111.

This post’s title has been rattling around my head with some interesting, surprising and somewhat easy answers.

One: I want an Apple Watch. Series 4.

  • it is new
  • I am an early adopter
  • I will get fitter using it

Response: I do not really NEED an Apple Watch. I have looked at them, tried one on and thought “that much for this?”. I also look at my fitbit which is doing the job. I am making efforts to walk more steps with that. So, I will stick with that.

Two: I want my cancer to NEVER re-occur.

  • to be certain of this would ease some fears
  • to know I have had it and won’t face what I have been through again

Response: I am sorry. That is not going to be a sure thing. In fact I know intellectually it can return because, as I was told at my last cancer check, “the risk of return is because you have already been diagnosed with cancer”. OK. I will join all of my fellow cancer friends and just live with that knowledge. Not over-think it, just live with it.

Three: I want my weight to stabilise now thank you…or even drop a couple of kilograms.

  • this would mean like dieting again (eek)
  • this might even mean disordered eating and secret eating happening (no!)

Response: I see I am looking at the scale to determine my worth again. Uh uh. This will not end well. How can I be doing that when I have overcome so much to get well. I need to remember my husband’s recent response (exasperated I think) when he said “I do not see fat, I see a healthy woman.”

Four: I want to be satisfied with our life as it is now.

  • I am doing my best to live in the present
  • I am grateful for much in my life including family, friends and connections on line
  • I no longer see having our own home as a pre-requisite to a satisfied life

Response: I have it already. It is worth thinking it through and coming up with the answer.

I have what I want. It is here. I am glad.

What about you?

What do you want?

Denyse.

 

Today I link with Alicia here: for Open Slather and Kel here for Mummy Mondays. Do visit them too and link up!

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: 45/52. Share Your Snaps 9. 5/11/18.


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Observations in October #2. 2018.104.

Observations in October #2. 2018.104.

Are we humans ever truly content with ourselves?

I am asking the hard questions today as I know personally, I find this tricky.

My husband/guru tells me “life it about living in the present”. OK. Not just him, but everyone who preaches mindfulness seems to have this view.

I can do this on some occasions now. I can bring my thoughts back to where I am (not so good ones too) and let them go of their own accord.

What made me observe this today?

My appearance. My weight. My changes.

For many decades I used food for calming and soothing and hid from much of my emotions this way. I often ate secretly. I have written about it here. I was performing well academically and professionally but not within my care of myself. The only, easy way was eating what soothed me. 

Back to the present.

I’ve had four years of over-arching anxiety related to life changes and transitions which actually resulted in not only Irritable Bowel Syndrome (diarrhoea) but a reduced appetite and a simple meal regime. I did not go out much at all. I was ‘at home’ in 2016-mid 2017 because of the increased symptoms.

I lost weight. It had started slowly in the year before we left Sydney but continued gradually until I found out I had cancer in May 2017. WOAH. Here is the page with the cancer stories if you are a first time reader.

From the time I was diagnosed with cancer in my gums until I came home from hospital it was inevitable I lost weight. I did. I was focussed on getting past the surgery stage for more than 7 weeks and if that is not an appetite suppressant, I do not have any other ideas. I wore clothes that were baggy but were not my fattest clothes as almost all of them were consigned to charity bins in the previous year. I did not think I would wear them again yet I was very reluctant to buy clothes which fitted me well.

I managed to convince myself to get some nighties and other items of a smaller size for hospital and recovering at home but it held no joy in me to need to do this. Cancer was my upper most thought. Then, once surgery was over, and I was able to finally sip water, and try a clear fluids diet in the 2 days before I came home, the dietitian visited me.

I was bombarded   given the message over and over that I needed to EAT what and when I could and that it needed to be foods of full-fat, high protein and smooth enough for a mouth with only a few teeth to get down. I had never, in all my life, been told NOT to lose any more weight.

I was weighed in hospital and then once I was home, because of the addition of an anti-biotic that played havoc with my gut I did LOSE weight. I got to the lowest I can remember. Ever. And it did not feel good. I knew I was not well.

Once the diarrheoa disappeared and my GP said ‘eat what you like and what you can keep in’ rather than the high protein/milky drinks on offer via the dietitian, I got back to a weight where i felt comfortable and well.

This lasted for a very long time.

Sharing My Image with The On-Line World.

Just under a year ago, my wellness was a great feeling. I began to think about going out by myself for a coffee. It took me until November to do that, and I decided to account for my day by entering a photo each day on Instagram under the various hashtags including:

#everydaystyle

#dresswithpurpose

#outfitoftheday

Many of my on-line friends, family and friends found my daily posts and supported my photos with ‘likes’ and comments’. I found a love of shopping for bargains again. It was fun and I was rewarded by the feeling and knowledge that I was doing this for myself and finally I seemed to understand it was good to feel great on the outside.

Cancer meant more surgeries, and more messing about in my mouth. Food intake became protein items such as mince based meals which I could easily eat with a few teeth and a tongue and treats became staples: little cakes, small donuts, icecream. Each day had something like that in it. I did not gain weight much at all over the time from October until my last surgery in May 2018.

Photos of the day became something others with cancer discovered and they liked the idea of dressing with prpose. With head and neck cancer, because our cancer is usually visible to others, eating and drinking out is seldom done even just going out. So, I was flattered to be followed and asked more about it.

Then, a day came I had longed for…and it had been delayed so it was even more special.

I had the upper prosthesis of teeth added to my mouth. It was in late August. It felt very strange and initially I could not eat much at all. Over time, I could as I became confident of my ability to bite and chew and now…..

I began to gain weight.

Boo. It is not much at all, and I really need to put it in context. 

I have gone from very restricted eating and feeling deprived but I knew I had an end in sight. 

What has been interesting to observe in me is my behaviour changes.

  • I am not hiding my eating like I did.
  • I am limiting my treat food.
  • I am realising that I cannot use food to deal with emotions any more.
  • I am also needing to come to terms with what life is like for me now.
  • I am considering no longer doing the “outfits of the day” posts because they are almost a year old.
  • I may replace them with a “self-care” theme.
  • I am having a small internal battle but less so as I chat with my husband about it, and also follow a mindfulness eating guide.
  • I am wearing my fitbit and aim to move more than 6K steps in a day. I am a work-in-progress!

I thought getting teeth would be the best and it is…but I can eat a very wide range of foods again…but I no longer want to end up very wide again!

It has helped me to share this so thank you for reading! I hope you made it this far.

Back to where I started. Are we ever really content with ourselves?

Denyse.

Joining the lovely Leanne and friends here for Lovin Life Linky and for the record, I am here with Leanne when we finally caught up for a coffee…and something to eat recently!

 

 

 

 

 

 

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But It IS Still About Cancer. 2018.103.

But It IS Still About Cancer. 2018.103.

Since spending much of last Tuesday, 2nd October, at Chris O’Brien Lifehouse (my cancer hospital) in Sydney, I have been affected by the fact that the reason I am in need of regular visits is because I have cancer. Specifically a Head and Neck cancer that was removed from my maxilla and upper lip named:

“Hybrid squamous cell carcinoma showing features of both verrucous squamous cell carcinoma & conventional squamous cell carcinoma”

On Tuesday I got a copy of the Histopathology report from 6 July 2017 surgery. It was ‘less confronting’ to read from this distance of time but it did have words in it I found hard to read.

With no risks per se, other than age, it seems my cancer took hold. I reckon it was there for many months before it was discovered after having my bridge/teeth removed when the gums were so sore and growing over the teeth (my request to do so in January 2017 was not heeded until April 2017). Diagnosis came in mid May 2017.

Why am I writing this now?

Because after all the surgeries (4 in less than one year), and many, many visits back to Westmead for my prosthodontist to make my mouth ready to accept the upper prosthesis of teeth, I thought I was almost done.

I am not.

Cancer is and will always ‘be there’ and in fact, my Professor and lovely Cate, reminded me “It IS about cancer” and that is why I come back for check ups and need to be vigilant myself about any changes.

My day of catching up, meeting people and doing my trip to Sydney independently was wonderful and I am so grateful that all of these people care about me and helping others with cancer. But it came home, forcefully, and is affecting me today with some sadness;

Cancer is always there. I had let it hide for a while behind everything else I was doing. I appreciate you reading this far! It is important, always, once I have something impact me as this has, that I share.

My husband is a wonderful person I can chat with always and I saw my GP to update him as a de-brief.

But before I go on, I had a TREMENDOUS day on Tuesday, noteworthy too because it was the first time I had driven myself to Chris O’Brien Lifehouse.

Asking Others For Their Thoughts.

I asked around  facebook friends who I know are through the active stage of treatments for their thoughts and some kindly replied with these words.

From S.:

“I’m past the ‘active’ part of my treatment, I’ve had surgery and radiation. Now I take a once a day tablet to prevent recurrence and I got 12 months all clear. But some days I feel just awful with fatigue and other side effects. I spend whole afternoons sleeping on the couch. I don’t feel like myself and it’s really hard when people say ‘oh you must be back to normal now’. I’m not back to normal and I don’t know if I ever will be. The weight of expectation (my own and others) feels so heavy and overwhelming sometimes. Depression, anxiety and feeling down even though you survived cancer feels inevitable and like I am lacking gratitude for my recovery. I’m not, it’s just hard”

From V.:

For me post cancer treatment is a mixed bag. I’m so grateful for my recovery but the fear and uncertainty for the future is still there. It’s a monkey on your back forever and you have to find a way to live with that monkey. The monkey is very loud and cheeky at times. Other times I give my monkey a time out and she sulks in the corner. At my recent follow up appointment I sat in a waiting room full of women ( I had early stage breast cancer).   They all had that haunted ‘how in the hell did I end up here’ look on their face and you just bravely smile at each other without any need for words.

From S.:

It’s my cancerversary on Tuesday so I’ll be blogging about it too! I don’t think the cancer shadow ever goes away but I try not to let the worry of it steal my joy of today.

From M:

 The elation of hearing the words “all clear” faded more quickly than I imagined and in its place was anxiety. Having been so closely under the microscope for so long,  I felt anxious that the cancer might return and it wouldn’t be spotted. Over time, this does ease and I look forward to my six-monthly check ups for continued reassurance that all is ok.

From M in N.Z.:

It’s normal to have a slump in mood after treatment ends. I availed myself of the Cancer Society psychologists who are trained to help us deal with the transition from treatment to the new normal.

I also went to the NSW Cancer Council website and found this article about ‘after the cancer treatment stage’.

Can cancer be a positive experience?

  • Many people find there are positive aspects to having cancer. Some even refer to the disease as a life-changing experience.
  • Cancer may cause you to re-examine your life choices, and may motivate you to travel, take up new activities or make lifestyle changes (e.g. starting exercise or quitting smoking). This shift is often gradual, as even positive change can take getting used to.
  • After treatment, some people want to help improve the cancer experience for others through advocacy or volunteer work.

Read more at https://www.cancercouncil.com.au/15289/b1000/living-well-after-cancer-45/living-well-after-cancer-back-to-normal/#sUFxCMjbDj1ZGQz4.99

New friend to me, and known to many is journalist and M.C.  Julie McCrossin, who is now 5 years down the track from her Head and Neck cancer diagnosis and she sent me here, to her podcasts for the Cancer Council, and this one of fear I listened to again.

Liverpool Hospital Head and Neck Patient Support Group listening to Dr Ben Smith, Ingham Institute on cancer recurrence anxiety. Learn more about managing anxiety. Listen to The Thing About Cancer Managing Fear podcast cancercouncil.com.au/podcasts/episo… @beyondfiveorg @CCNewSouthWales http://feeds.soundcloud.com/users/soundcloud:users:314217701/sounds.rss

Julie said “I find the fear catches me unawares, like on my recent birthday”

Thank you friends for sharing.

So, I am not unique.

Always good to know.

And I can share my worries and fears with others who ‘get it’.

Having cancer never really ends, but I am always grateful for the friendships and new experiences I am having as a result of cancer.

Thank you one and all.

Denyse.

Joining with Kylie for I Blog on Tuesdays here and with Sue and Leanne here on Wednesdays.

 

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