Friday 22nd March 2019

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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Not A Smooth Recovery Path For Me: Head & Neck Cancer. 2018.133.

Not A Smooth Recovery Path For Me: Head & Neck Cancer. 2018.133.

Update One: Monday 24 December, is that whilst it is always disappointing to have changes like this in recovery, I am actually able to manage the issue of pain, when it arises and am feeling better in general.

Update Two: Monday 14 January, the pain comes and goes but the news from my Head & Neck surgeon is that he was looking for cancer when I saw him on 8 January. This made me quite concerned. Whilst there was not cancer there as he could see, I do now know there could be another surgery this year. Sigh.

It’s Friday 21 December 2018 and not a normal blogging day for me at all.

But, head and neck cancer recovery is not ‘normal’ I guess!

My blog has been a great source of comfort to me as I can write down what is happening to me, and often receive support in return.

That is lovely.

Today I just need to share this story.

Since my last blog post here, I have continued to be back and forth to the great team I have at Westmead: my prosthodontist and nurse. Each visit since October – when I last saw my Head and Neck cancer surgeon and nurse – has been about:

  • checking the health of the skin which was added to my upper lip (under it) last May
  • checking I am keeping the metal abutments clean where they are attached to the upper teeth prosthesis
  • and fitting me for a partial lower denture to add to my remaining 8 teeth

Showing my mouth’s flexibility – reduced now.

I have had some pain. It is like a sharp nerve pain and each time I mentioned it I was told it is part of ‘re-modelling’ and I have taken that to mean, this will go on as my new mouth and lip settle into their space. I am pretty good at managing pain but earlier this week I needed to share what had been noted by me after seeing my G.P.

  • the pain, which initially we/I thought was from some abrasion of the new tender inner side of the lip against the prosthesis was not likely to have been only from there…because
  • when I tried to use my small micro brush to clean in between the gaps left at the top of the screwed in prosthesis there was  no gap 
  • where the gap had been was skin, resting and immoveable, onto the top of the acrylic prosthesis

After my G.P. saw it, I sent these photos to my Professor and the Prosthodontist. The prosthodontist rang to say, stop using the microbrushes and use the water pik only to clean. The professor emailed to say “come and see me early January for a closer look”.

Yay to having responsive professionals. Very grateful.

Not so happy for the pain it is causing, the lip tightening even more and the disappointment that things are not going as I had hoped. Probably as my team had hoped too!

On the positive side, I have overcome setbacks before AND I trust my professional team BUT this is not a situation I imagined.

Skin does its thing it seems. My post here is about how the stent being taken out too soon prevented the full healing and I needed a 4th surgery and then over 3 months with a new stent.

I seem to think….more surgery may be on the cards.

Sigh.

I am taking pain medication as advised by my G.P. I am doing all I can to treat myself more gently. I am looking forward to seeing the family on Christmas Day here but my eating may be even more compromised by then. Who knows?

Many I know in the Head and Neck cancer support groups are in quite different stages of healing, acceptance of many aspects of their recovery and managing things well. I am buoyed by them, and already support for me and my update has helped. I also know as an Ambassador for Beyond Five, that those of us with Head and Neck cancers are affected by treatments long after the five years.

I am just over 19 months since diagnosis. I am also less patient than some! I am, always very grateful for my cancer treatments and follow-ups in an Australian setting here:

Chris O’Brien Lifehouse

The late Prof Chris O’Brien. In the hospital named after him.

Westmead Oral Restorative Sciences

Thank you for your support, friends from blogging land and readers!

Denyse.

 

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Best Cake I Have Eaten. 47/52. #LifeThisWeek. 2018.120.

Best Cake I Have Eaten. 47/52. #LifeThisWeek. 2018.120.

There is no best cake I have eaten.

This is because there are M A N Y best cakes I have eaten.

Probably none more delicious than this one I ate with a teaspoon as one of my first post-surgery snacks in July 2017. I remember saying to the dietitian “I will be able to eat cake” and she confirmed that, adding that if I put custard and icecream with it would help it go down AND add nourishment.

Lemon cake with icecream & custard

Now I shall list those great cake eating experiences according to occasion and memories!

My mum made the best cakes. They were always ‘from scratch’ as they say and Mum, not a cake or sweet lover herself was always happy to oblige.

This would have been the first cake I ate. My 1st birthday cake from almost 68 years ago.

My First Birthday. 30 Nov.

Mum would make ‘little cakes’ as she called them. She made them in gem irons. Solid metal trays where cake mix was added and then as it cooked, it became a sphere. Mum would ice these too. The most delicious ones were when she made them into lamingtons with mock cream in the centre. Oh how I loved getting these as a treat to take home when I was a young married mum.

When it came to birthdays Mum made our kids cakes from the Australian Women’s Weekly Kids Birthday Cookbook – I particularly recall the ’10’ cake for our daughter made as a tennis racquet. She made a race track one for our son’s 6th birthday cake.

And even into her ageing years Mum would rustle up a Rainbow Cake for Dad. A layer cake: chocolate, vanilla and strawberry with cream in between the layers. My request was for her Orange cake with orange icing and orange zest on top. Yummmmo.

Of course there are no photos of these cakes because..there was nothing like the photo-taking these days.

The most treasured ingredient in all of these cakes was LOVE. Mum loved to do this for us and we loved her for it!

But wait there is more!

I prefer to make cupcakes these days as they are portion-controlled and I do make some for my husband which get frozen and he brings one out a day. I make mine (and those I gift to others) with icing because “yum” and it helps get the cake down.

Before I went to hospital last July I made a batch of lemon syrup cake and these went down very well warmed through as well as with additions as above. I made cakes for my granddaughter’s 21st and what joy that was for me. Her mum (who takes after my mum in her cake cooking prowess) made the main birthday cake. I have also had delicious cakes made for me by my daughter and they include orange cakes and the famous lemon walnut cake (was a recipe of Mum’s originally) that Sammie has here on her blog.

I found that lovely Kyla at Cakes by Kyla made superb cupcakes which I could freeze and eke out for eating. Then I had a WIN. $250 worth of cupcakes and over the last 6 months these have been purchased, frozen and also given away. Yummo.

So, about my best cake eaten…well, I guess if I had the chance, it would be one (or more!) of Mum’s little lamingtons with mock cream inside.

How about you?

What is the best cake you have eaten?

Tell me more in the comments.

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!

Joining Alicia here for Open Slather and Kell here for Mummy Mondays.

Next Week’s Optional Prompt: 48/52. Summer Means This. 26/11/18.

 


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November Notes.#1. 2018.113.

November Notes.#1. 2018.113.

November notes are related to health and mindfulness and in November in Australia we see the jacarandas in bloom. This reminds us of….for some exams are just around the corner, it’s almost the end of the academic year and it’s closer to Christmas than we think.

A year ago, on 30 October to be exact, I began a practice that was going to be for 32 days in length. It was to ‘dare to post’ a photo of myself every day from then until I turned 68 on 30 November 2017.

As regular readers know 2017 brought a significant and blindsiding diagnosis of cancer: head and neck cancer located in my upper gums and under the top lip. If that doesn’t give anyone a shake-up then I don’t know what might.

I have always enjoyed sharing my life via photos on social media, instagram for preference, and as someone who had also, in that ‘life-altering year’, lost even more weight, new clothes and an appreciation of a more physically comfortable body gave me an idea. It was not my original idea as others before me were already snapping themselves with hashtags:

#everydaystyle

#dresswithpurpose

#outfitoftheday

#over60sstyle

and more….and I thought, maybe I could challenge myself to do this. I decided a little matter of not being able to open my mouth to smile would not stop me, so off I went. I wrote about it here in 2017.

Until I was 68. Then it changed. Again. I liked doing this so much I continued. Here are some of the shots back then.

In 2017 I used collages. It was a good chance for me to show the world how my ‘mouth’ was going – post July and then November 2017 ops

 

And, my husband made me smile (most times) for the pics. Finding some backgrounds was interesting.

My ‘telling it as it is” shot. I was in pain in my face from surgery, but we went to the beach to distract me…I also went bare-legged (right leg) to show my surgical scars.

Once I established this great routine, I added another, once I could be sure I could do it. Out for a coffee. Every day.

 

And as the weather warmed, it was clear I needed to shop for new items.

 

Once I was less fatigued, I found shopping for some new clothes (only ever ones on special) was a big distraction from cancer and the surgeries’ effects.

Another significant day: We attended our granddaughter’s 21st in Sydney where I saw family who had not seen me since surgeries and I got another dress for the occasion.

Deciding to go on after my birthday! Christmas Day shot with 3 of our grandkids.

And then into 2018.

 

I like a challenge, so a self-determined one, was that every day the clothes would be different. I kept as accurate a record as I could and it was also, ahem, great getting my shopping gene back. My mum liked to shop for clothes and shoes. As I can not find pretty shoes because of awful feet, I went for the clothes. The ladies in the local Rockmans, Millers and Suzanne Grae got to know me well and bargains were had.

It was a great thing for my mental health as there were days when, like all of us, I just would think, “I cannot be bothered”. They were the days, I recognised were the ones when I need to be bothered the most. So, as someone who keeps to her word, I went on.

I believe that this helped my recovery and in a future post or two in November Notes, I will share more.

  • Do you take part in any daily Instagram challenges?
  • Would you post photos of yourself on social media?
  • If the answer is yes, yay for you! If no, what is stopping you?
  • Can you consider that this is something that may be good for your health too?

Enough from me!

Denyse.

Joining with Leanne here for Lovin Life link up on Thursdays.

 

 

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Appreciation In August. #4. 2018.80.

Appreciation in August. #4. 2018.80.

This post is short on words…but long on gratitude and appreciation.

This collage represents much of my cancer story: from diagnosis in mid May 2017 through to adjusting to the notion I had cancer …then surgeries…four in all…and recoveries…and 21 visits (and more to come) to the prosthodontist at Westmead as of Tuesday 21 August 2018..

 

But it’s been a BIG news week for me and I wanted to share (via two little vids) how I was on the day before my new upper teeth were added to my gums/jaw (remember, they came from my right leg) and then the day after….

It is for me as much as anyone as we cannot always notice our own progress which is why I made these.

 

And then….my set of upper teeth (prosthesis) was attached (screwed in) to the abutments in my jaw (thank you fibula) on Tuesday 21 August 2018. For 412 days I had no upper teeth!  Here I am talking….cannot stop me…24 hours later!

 

Thank you to all who have commented, read my posts and supported me in so many ways that I cannot count.

I appreciate each and every one of you.

You are my cheerleaders!

Denyse.

Thank YOU Each & Every One of YOU.

Joining with Leanne for Lovin’ Life Linky and Leanne knows all about the value of cheerleaders!

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One Year After My Major Cancer Surgery. 2018.59.

One Year After My Major Cancer Surgery. 2018.59.

This space, Denyse Whelan Blogs, has been a life raft to the outside world and a connection from me to you, the readers and fellow bloggers. I am aware that since my first May post “I have Cancer” there have been a significant number of posts about this cancer and me.

In reaching the 1st year anniversary of the major mouth surgery on 6 July 2017 last Friday, 6th July, I decided that whilst there will be occasional updates, there will be a general easing away from the focus as I get to look forward to a broader life view.

However, I cannot predict when that will be, as a year ago I might have been given the impression that my recovery, i.e. surgeries and healing to gum and jaw readiness for implanted teeth might be 8-9 months. I am in my 13th month now. My mouth has needed a 4th surgery and a second skin graft taken to enable the lip the be more prominent and for there to be enough space for teeth to go in. THIS is why I am on a drive every.single.week until mid August so that my excellent prosthodontist can do the best first stage of teeth for me. Implants remain much further away.

I wanted to do a snapshot of how it has been for me as I have recovered and some of the ways in which I have been able to adapt and adjust to life with no teeth on top, 8 on the bottom, and a skin graft inside my mouth, along with a bone made into a jaw.

Life went on…after hospital but I needed to adjust significantly to home life as I was restricted with movement: a boot on the leg where the surgeons had removed my fibula and skin/flesh for my mouth. I also could eat with difficulty and there were some tears via trial and error. Over time I learned how to better cater for myself after sending my husband on early day missions for soft foods like jellies and mousse. I admit I still find the eating restrictions hard but do what I can to keep up nourishment as I need protein each day and some iron-rich foods. Since late last year I started cooking mini-meals and freezing them.

I am not someone to sit around for long and once I could drive, 6 weeks after surgery, I set out for small drives to be used to both managing the car, and that I was stable on my feet when I got out. I soon re-engaged with shopping. Even though I had not enjoyed shopping before the surgery (I was anxious and I was not interested in clothes or books or even browsing) I found my shopping mojo again when I knew I needed a focus for each day. Along with the enjoyment I have always had for being near the beach or finding places to photograph, going out every day became must-do for my emotional health. I dressed well, had a photo taken and went out to chat with people I met and have a coffee and do some art.

For the first part of 2018, being holidays everywhere, I waited out the time before planned third surgery in February by distraction, activity and going to the beach as well as out for coffee. I had also had a second surgery in November 2017. It was always hoped that the February one would be my last or maybe that was just me??

The February surgery saw my mouth healing well and the prosthodontists took my stent off. This was short-lived (darn it) because my surgeon wanted it back on. Alas, the reason it was needed was the area between my upper lip and jaw was very tight and in fact left no room at all for the addition of teeth. I found out, much to my disappointment that a 4th surgery, and skin graft to make the inside of the mouth even roomier would be on in mid May.

This is where I am at now, almost 8 weeks from that time. The stent is doing the job. It has been mighty sore and uncomfortable at time but my fortnightly, now weekly visits to the prosthodontist at Westmead sees this being removed, trimmed and re-fitted. It can take over 2 hours. Nevertheless I am a very co-operative patient and I want it to work too. Over the coming month and more I will be at Westmead for longer visits and with luck on our side, the first fitting of a set of false teeth for the upper gums.

Thank you if you have read this far.

I was of two minds about posting this. I said to my husband “I am sick of my posts about cancer and recovery” and his comment was “then other people might be too.” However, I also decided that it was IMPORTANT to me to keep the update and to mark this occasion of ONE YEAR since the first surgery and that’s why this post is here. So much of my recovery has been, and still is, mental. It is about attitude, some courage and a willingness to see this through. I have been, at various times angry, impatient, teary, frustrated and downright “over it”.

However, I am MUCH better at picking myself up, dusting myself off and starting all over again…

Denyse.

 

On Tuesday this posts links with Kylie here

On Wednesday this post links with Sue and Leanne here

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Six Months On. #OOTD*. 2018.38.

Six Months On. #OOTD*. 2018.38.

#OOTD* = Outfit of the Day. Used widely as a hashtag on Instagram.

The story starts:

Last year, on 30 October, I began (most unconfidently) to accept a self-made challenge to post of Photo-A-Day of me in a daily outfit for 32 days leading to my 68th Birthday.

Here is the first post:

There were some very encouraging comments. I continued as I am someone who when she starts a challenge, she finishes it! Or so I thought.

Early in 2018 I wrote a post explaining where my reticence had come from the ‘show off myself and clothing’. It has/had been a LONG time since I had actually been proud of my appearance but it did make me take a leap of faith to carry out this so-called 32 post challenge.

I was inspired by some blogging friends too: Jan Wild here, Em Hawker here, Carly Findlay here and Kimba Likes Here

The story continues until my 68th Birthday.

I noticed that by choosing and wearing an outfit of the day, and going somewhere for a coffee (solo is fine for me!) and a browse was improving my mental health. I had a reason to get up and get going each day. I have to admit, I enjoyed the browsing…and the canny-purchasing too. I had to admit to buying properly fitted bras. That took some courage and then once I did that, I felt even better.

I was joining in outfit challenges here with Nikki Parkinson from Styling You. I liked the comments. I know I am no spring chicken but it did my gum cancer emotional self-care a lot of good as I continued doing what I did.

The story goes past the 32 posts on Instagram! 

I admit this was (and still is on 90% of days) fun and I loved the challenge. When I put it to friends on Instagram whether I should continue to answer was a mixture of YES and DO what you want to do.

I wanted to continue. My shopping habits continued. Yet I needed new clothes. It had taken me a LONG time to admit to myself that I could spend money on clothing and accessories because I had been very used to rejecting that I could self-care.

Having cancer actually helped me.

How?

I was determined to get out every day. No.Matter.What. It was always something I was glad I did even if it might have been a short drive to have a coffee and come home. I also take an art kit with me and spend sometime reflecting on what’s been happening.

Special times in the story.

In the months before deciding to become part of #ootd I thought about my eldest granddaughter’s 21st birthday. I used to be concerned I could never travel to Sydney because of my fears. In a post here for anyone who has not read this. And this is the follow-up post about me conquering fears and anxieties.

Healing times as part of the story.

The outfits of the day are helping me manage my recovery from cancer. I recall the photos and can notice my mouth – 3 surgeries to date and one coming up! The daily publication of an instagram photo allows me to see myself which may sound odd. But until I do view the photos – of course, I preview them but they are never photo-shopped, just cropped – I often do not realise the improvement seen  by others mostly my husband.

When I travel to Sydney to visit Dad or see my specialist dental team or my surgical team, it is another good reason to choose an outfit of the day to aid both my confidence and demeanour. It actually does help me to lookgood to feelgood.

What else about the story?

From time to time, I give myself even  more of a challenge! To post a photo where my arms are seen for what they are. To post one of me in shorts and even one day, in the water at the surf. I do these to remind myself that to be true to me, I cannot continue what I used to do which was censor what was published in a photo. The result has been that others may be inspired to give up some of their old thoughts about sleeveless items and how they appear in photos.

Today, 1 May, is the day I am visiting Sydney to see my professor about surgery #4. This was not expected back in February as it should have been the last one. However, my mouth and the way it has healed had other ideas. There is not any room for my implants to go in so I will be hearing today, what the surgery will entail. I am guessing: cutting, stitches, stent back in, and possibly another skin graft. Sigh.

Will I be choosing an outift to wear that day to help me feel confident and in charge…even if inside I am a bit worried and fearful. You bet I will.

It will have RED in it somewhere….my go-to colour for adding to my inner confidence.

Watch for me on Instagram. I have a private account (I was hacked in May 2017) so ask for a follow. @denysewhelan

I hope to see YOU try the #ootd too.

I know Leanne has decided to do this more. Here is her link.

And yes, the story will go on after this 6 months mark.

I am needing and wanting to do this actually. In fact, in the recent article published here: telling my story, there is something said at the end.

Oh, and when I appear for my next surgery, early a.m. on Wed 16 May, I will ensure I wear a better bra for my photo unlike in February for #3!!

And how could I not make a tribute to this man…..the instagram photographer. He knows to tell me when a bra-strap is showing…he has, of late, been quite cheeky and he makes me smile broadly. But then, I have no top teeth so it’s a pretty grim look, then he simply looks at me with love in his eyes and I smile. That’s the secret.

I use these hashtags for my daily outfit posts: blue: relate to blogging, red: to outfit of the day, green relate to cancer, mine in particular.

#denysewhelanblogs

#babyboomerblogger

#everydaystyle

#outfitoftheday

#dresswithpurpose

#ootd

#lookgoodfeelgood

#cancersurvivor

#headandneckcancer

#hncspecialistteam

#squamouscellcarcinoma

#cancerintopgums

#notHPVrelated

#mouthreconstruction

#prosthodontist

#chrisobrienlifehouse

#humansoflifehouse

#beyondfiveorg

Do you dress each day with intention?

How do you find yourself feeling when you dress to meet each day in an outfit chosen by you?

Tell me more in the comments!

Denyse.

On Tuesday this posts links with Kylie here

On Wednesday this post links with Sue and Leanne here

On Thursday this post links with Leanne here.

 

 

 

 

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Changes To ‘MY’* Cancer Recovery Plan. 2018.30.

Changes To ‘MY’* Cancer Recovery Plan. 2018.30.

Are you a planner?

Are you someone who is pretty well organised ahead of time for: birthday cards to be sent, lists for shopping to be made, appointments made and kept…and attended…should I go on?

Well, I am.

It is part of my DNA I reckon!

Yet, as I wrote here only last week, there I was saying I was becoming used to uncertainty.

That was Tuesday.

On Wednesday  28 March 2018 I got an inkling things with my cancer recovery were not going according to MY* plan. That is, what I reasonably anticipated given the information I had prior to each surgery and after it. OK, I admit it: once I hear a time frame I tend to believe it and stick to it.

Do Read on.

What Plan Did I Have?

Not for the year I mention..but you get what I mean!

A linear, calendar one of course! That’s how I have been used to life moseying along. I know, I am supposed to have embraced uncertainty but I admit, like 99% of us humans, I am digging the certain …the plan….the ‘being sure’.

  • 17 May 2017: Cancer Diagnosis Received by a telephone call from the Oral Surgeon who took the biopsy the previous week.
  • 18 May 2017: Meet With Head & Neck Surgeons at Chris O’Brien Lifehouse* Camperdown in Sydney for Overall Diagnosis and Plan For Radical Surgery.
  • 24 May 2017: Meet with Prosthodontist at Westmead Oral Services who will oversee and make all to do with my ‘newly reconstructed mouth’ during and post surgery.
  • 30 May 2017: Second Visit to Prosthodontist and CT scans readying my Professional team to make decisions about parts of my leg to be used for reconstructive surgery in my mouth.
  • 6 July 2017: Big Surgery: #1. 11 hours.
  • 6 July-15 July 2017: Recovery in Chris O’Brien Lifehouse.
  • 15 July – 27 July 2017: Recovery at Home, Treatment of Leg Wounds by Community Nurse, Visit to Surgical Team, A/Prof Ebrahimi and Justine Oates – Head & Neck Cancer Nurse Specialist.
  • 28 July 2017 – 21 September 2017: Recovery at home, visits by Community Nurse decreasing and in mid August I began driving again as ‘boot’ on leg was off. Independence increased.
  • 21 September 2017 – 9 October 2017: Continued wellness returning, eating always a challenge but doing what I can to prepare meals for me, seeing our GP for support (from July actually!) for any concerns I had inside my mouth. If he had any concerns, I could contact Prof Clark.
  • 10 October 2017: Visit to Chris O’Brien Lifehouse to see Prof Clark. Told 2nd Surgery would likely be before Christmas.
  • 11 October 2017 – 5 November 2017: continued independence and back into life as best I could. Started my Outfit of the Day pics!
  • 6 November 2017: Visit to Westmead for planning for next surgery. I admit, I often do not exactly understand the ins and outs of my surgeries… even though it is well-explained. I sometimes have to ask my husband about it. I blame being spatially-challenged and that it is all happening inside my mouth! 
  • 8 November 2017: Phone call from Prof Clark’s Practice Manager, Julie who is awesomely patient with ME that my 2nd surgery is next week! OKayyyy. And it is a day surgery only.
  • 15 November 2017. Leave the Central Coast at 6.00 a.m. to get to COBLH* by 9.00 a.m. We made it. But I confess my anxiety was high and tears on the Harbour Bridge in peak hour traffic were evidence of that. Surgery around 2 hours at 11.30 and we were on our way home by 3.
  • 15 November 2017 – 20 November 2017: Recovery at home. More stitches and re-arrangements in my upper mouth was OK. Pretty painful as nerves seem to have been affected by it did recede. But, a skin graft was taken from my right thigh to add extra skin inside my flap to grow to help my upper lip reconstruction. Visited Prof Clark at St George Hospital. I was going OK but one side of the opened then stitched ‘flap’ was showing some silicon (should not have) so “keep an eye on it”. We did.
  • 29 November 2017: weird but wonderful event. I could have a LONG bath…previously I could not get my leg wet…and over time in that bath, undo the bandage and let the wound covering get wet. It did, and I did this over the next few nights. Until, it eventually came away leaving pink new skin.
  • 5 December 2017: To Prof Clark at COBLH. The flap area did keep retreating somewhat and the silicone was showing. Prof Clark cut a bit off. Then he asked my husband to take pics inside my mouth and send them to him from time to time.
  • 6 December 2017 – end of December 2017. I admit I was worried about the flap and what that might mean but Prof Clark eventually said, things are OK and you can stop sending the pics. Phew. It is VERY hard to get pics inside the upper mouth!
  • January 2018: Just the usual at home activities and going out for a coffee & buying clothes (shh).I knew a 3rd surgery was ahead but unsure when. However, it was to my surprise that I found it would be on 7 February 2018.
  • 6 February – 7 February 2018: No drive down on the day of surgery this time, meant after an overnight stay in the same street as COBLH I could walk with my husband up to Day Surgery admissions by 6.30 a.m. and was in theatre by 7.30 a.m. having said hello to Dr Deshpande (my Prosthodontist) and being blown a sweet kiss from Cate Froggatt who is the Chief Nurse working alongside Prof Clark.
  • 7 February 2018: Back in Day surgery by mid morning and got dressed to go home. Was sporting two foam pieces with stitches attached out of my nose, above my lip…that WAS a surprise. Mouth was its usual uncomfy place but with added hardware. More abutments had been added to my ‘new jaw’ and a stent (mouth guard) covered it all. OK. Hard to get used to. It was uncomfy and eating even more of a challenge.
  • 14 February 2018: a hot and long drive to see Prof Clark, and the helpful Priscilla looking after my IPTAAS forms, and then chatting with Cate about my blog. She had read it and was recommending Nadia at Beyond Five check it out. My foam pieces and stitches came out. Yay. Sent home knowing then I would not see Prof Clark again till a cancer check on 22 May 2018 but would see a LOT of Dr Deshpande.
  • 23 February 2018: to Westmead where Dr Deshpande’s colleague (who had also attended my surgeries) Dr McLachlan removed the very stinky stent. Dr D had a broken hand so my mouth was observed by him and anything that needed to be done was by Dr McL. They were so pleased with the health of the gums, they said I could have the stent off. Cue smiling and hallelujah!
  • 26 February 2018. Disappointment but Prof Clark deemed that the stent go back on. For the reasons of keeping the gums in check. I needed to remember this is about getting my mouth right!
  • 1 March 2018. To Westmead and both Dr D and Dr McL observed and cleaned the area and put the stent back with gel only. NO gauze.
  • 1 March – 6 March 2018. In pain. A lot. Where the stent met my inner cheeks. I rang Dr D and he told me to return the next day.
  • 7 March 2018. Dr D reduced the edge of the stent and it was back on and I was in much less pain. Phew.
  • 15 March 2018. To Westmead where stent was removed for impressions to be made for the ‘false teeth’ to be made in wax to get an idea of how my smile and position of upper teeth will appear. At this visit, Dr D reiterated his concern that my mouth is too tight to take the implants.
  • 28 March 2018. To Westmead where the fruits of Dr D’s labours in the time since last visit had me happy (after some initial reservation) to see my smile again.

So what has happened since last week is that on Thursday before Easter, I was told by Dr D (after my phone call from Prof Clark’s Priscilla booking me in to see him early May) that in consultation with Prof C, the fact that my mouth was too tight would mean a 4th Surgery on 16 May.

I was sad. I was a bit over it all but I also knew deep down this was probably going to happen.

What now?

12 April 2018. To Westmead to have my upper false teeth fitted to the abutments for me to get used to the teeth in my mouth for the next month. I am unsure that they will help me with eating but we shall see. I am certainly pleased that Dr D wants me to try these teeth as he believes there is a social benefit too.

1 May 2018.  To COBLH to see Prof Clark, wearing my ‘new but temporary teeth” and for him to check out the area ready for vestibulplasty #3 and surgery #4.

16 May 2018. Planned Day surgery. We will come down and stay the night before. From what I am told by Dr D the plan will be for me to recover for 10 days at home (with the potentially stinky gauze under the new stent. Sigh.

22 May 2018. Post- op Check up at COBLH with Prof Clark. Hopefully all is well and any stitches that need removing are. Unsure if I will be wearing the foam blocks again.

Late May 2018: Westmead for stent to be removed, gauze taken out, area cleaned and impressions made for …the implants. Eventually I will have the implants but it will depend on the healing.

May into June 2018: Keeping the stent in all the time with visits at intervals to Westmead.

June into July 2018. As above, with a view to impressions and so on for implants.

What have I learned about planning and cancer?

  • That each person’s body heals at its own pace and it may not always be what the optimum is.
  • When I learned about the surgery I would be having, in May 2017, it was set out that from surgery (it ended up being in early July) to implanted teeth, is usually around 8-9 months.
  • What is my forecast now that a 4th surgery is planned?
  • It is close to 12 months from the first surgery.
  • In fact, this 4th surgery will be one day short of the anniversary of the day I was diagnosed.
  • I accept that I have the best people caring for me who have my best interests at heart.
  • I accept too, that despite my planning and the fact “I do all I can to heal well” sometimes bodies do what they do.

Last Wednesday was a highlight of HOPE. I think every cancer patient wants HOPE.

Mine came unexpectedly when I saw myself SMILE again. It was better than I ever imagined.

In light of my selfies and all the record-keeping I have been doing in processing who is this Denyse now…I made a small video of my face…and smiles and more from my 65th Birthday to last Wednesday. It is good for me to see the progress. I hope you can check it out too.

I know this was a long post and if you read all the way, thank you!

It was helpful for me to write it and to make the little vid.

Denyse.

Joining with Kylie Purtell for I Blog on Tuesdays here.

Joining with the linky called Midlife Share the Love with Sue and Leanne here on Wednesday.

And lastly but never least is Leanne’s Lovin’ Life link up on Thursdays here.

 

 

 

 

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