Saturday 17th November 2018

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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Eating After My Gum Cancer Surgery. Part Two. 2018.24.

Eating After My Gum Cancer Surgery. Part Two. 2018.24.

Now where was I?

Oh yes, about my eating after cancer surgery. Part One is here.

Let me tell you this eating with only 8 teeth on the lower jaw and one tongue has called for:

  • imagination – what might that food feel like in my mouth and will it be able to break down to enable swallowing
  • care of my mouth. Yes, this mouth needs even more oral care now. So it is brushing of my teeth and rinsing with a particular mouth wash after morning and evening meals
  • shopping lists for foods I had not previously considered eating but do because of nourishment and ease of eating
  • trying to remain creative with meal choices for me while I am very restricted. It is hard and I do get frustrated but I try to remember it is not forever
  • nothing that is pre-made or take-away (boo to having to make everything from scratch) unless it is a plain cake, a scone or yoghurt.

My mouth: at least the lips seal but it remains a challenge to get any drink into it. I use a ‘squirt’ water bottle and when having a cuppa – tea of coffee – I have a serviette under my mouth. Messy Me.

As the initial months changed from me being dependent on my husband for meal-prep and shopping to me doing this for myself it did give me freer rein for creativity and independence but in some ways in was harder. My husband eats very simply but from a different meal-base to me (and it has been like that even before my cancer) so there have been few shared meals….except for that one time, before I had surgery #2 and he made a Baked Lamb Dinner…which was so soft and delicious and easy-t0-swallow the memories are fresh!

MEALS & SNACKS.

BREAKFAST.

Once I learned that tiny slivers of toast do not equate with a satisfying breakfast, this long-time cereal avoider embraced weetbix and I am a two weetbix, sugar and milk girl every day.

MORNING TEA.

This is mostly Morning Coffee as I go out each morning around 10.30-11 for my daily outing. See more about that here. More often than not it is just a coffee but on some occasions I can add a treat. It takes me a long time to eat some of these and I often bring part of it home.

LUNCH.

If I have had a snack as above I will not have anything for lunch…because I will still be full and I cannot find the energy to try to decide what I will take ages to make and then ages to eat. It is true! However, I know the value of nutrition and need to give myself more credit for knowing actually what to select and eat it. The last few weeks I have found it harder as I have a 3rd surgery which has left me in some discomfort and even less room inside the mouth as a stent is in there where the implants will eventually go.

On the way home from Sydney when I saw the Professor recently my husband ate the cheese sandwich we took for him and I had a little kids’ yoghurt with the squirty-top.

AFTERNOON TEA.
Depending on how much I have eaten at lunch, this may not be anything or it might be a cup of tea with biscuits that can be dunked. Yes. Only those. I have tried a few but only these work for me: Malt biscuits, Scotch Fingers, Orange Creams. Even gave Tim Tams a go but the biscuit part was too hard for my mouth.

DINNER.

I have always cooked in bulk for me and for my Dad. I often made spag bol variations and beef casseroles and chicken ones too. However, I am someone who craves variety and I was O.V.E.R. anything with chicken once all of the chicken soup with vegies were done and even those with added noodles. I had low iron after surgery so determined to eat myself better (along with the iron tablets) I used red meat meals.

I made and still have in the freezer in small meal sizes for me: Beef Casserole and Veggies  along with smoothly blended mash potato & sweet potato frozen in small meal sizes to add on top. Spaghetti Bolognaise and Pasta Bake. For a change of taste, some Salmon. Cheese and Rice meals which are a comfort meal I invented ages ago. I have also cooked chicken mince with sweet and sour sauce to add to rice.

OTHER SNACKS AND TREATS A.K.A. BEATING THE BOREDOM.

Firstly what you need to know:

I cannot bite anything.

I cannot, at the moment, completely seal my lips.

I cannot use a straw because of how my mouth has been changed.

I can put very small bite-sized pieces of suitable food into my mouth, allow them to move against my lower teeth along with some encouragement from the tongue and then when I believed they are small enough and soft enough I swallow.

I have not choked (yet) but I will always have water bottle next to me when I eat.

I use a teaspoon for eating my meals & some snacks unless it is bite-sized as above and I can use my hands.

The softer and wetter a food is, the easier it will go down.

 

PUTTING IT INTO PERSPECTIVE.

I miss the many textures and tastes of so many foods  but I am also grateful to be able to eat after this surgery as not all of those having surgery like mine get to do that. Some have to eat permanently through their stomach or via a feeding tube. I do try to keep my whingeing to a minimum as a result.

I am so very grateful to the team who has brought me to this point. From Friday 23 February my trips to Sydney will be to Westmead Oral Restorative Services where my upper jaw implants are being planned. Currently the most recent surgery saw a large stent/mouthguard put over the area where the implants will go and it has made my mouth quite painful. Eating has been even harder.

I am over 9 months into my cancer journey and am hopeful that all that needs to be done will have occurred by the time May comes…my first year anniversary. We shall see! Meanwhile, I will be doing some more ‘out for coffee’ visits and eating as safely and nutritiously as I can.

Sunday Night Dinner: my invention…taco in a bowl!

And me on Sunday 18 February. Check out my top lip! My mouth above is swollen because of recent surgery to add more skin to my top lip (thank you) and added in there is the stent pushing the top jaw forward. Uncomfy, yes. Worth it. Hell Yes.

I hope that you have found reading both parts of my story of Eating After Gum Cancer Surgery of interest. My operations took place here at Chris O’Brien Lifehouse and the Team headed by Professor Jonathan Clark performed all three of my surgeries. I follow Head and Neck Cancer Support Australia on Facebook and Beyond Five

On Friday 23 February I visited Westmead Oral Health Services and the two men who are part of my surgical team as well, determined that I could do without the stent for the next 4 weeks and so this was good news. My photo updating the one above is here:

UPDATE: 

Unfortunately my relief was short-lived as when my surgeon saw the pictures of my gums on Monday 26 Feb he wanted the stent returned on my  visit on Thursday 1 March. At the time of publishing this post I will be two days away from having the uncomfortable hard plastic stent removed and first impressions made…..which mean teeth will take months from then but my prosthodontist says “we have to get it perfect, Denyse.” Sigh.

Denyse.

Linking with Kylie Purtell for I Blog on Tuesdays here, with Leanne here for Lovin’ Life Link up for Thursday’s Lovin Life Linky  and on Wednesday, with Sue here for her link up.

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Eating After My Gum Cancer Surgery. Part One. 2018.18.

Eating After My Gum Cancer Surgery. Part One. 2018.18.

I thought it may be of interest to readers if I outlined how I have been able to ‘feed and nourish myself’ since last year when my cancer was cut from my upper mouth, gums and jaw and I was left with…not much! Actually it was a miracle of science how my upper mouth was made from my leg and there is much to be read here for those who do not know my story.

In the months leading up to my eventual cancer diagnosis my upper gums made eating difficult as they were sore, and with a new denture it was hard work. I guess in some ways it was practice for what was to come. I could not really crunch or bite down on something like an apple or chips. I could have smaller cut up bread-rolls but not bite into one. Mmmm. I had forgotten this and now I am writing it I can see why I could not even eat steak or a cutlet. Foods I cannot eat now but am longing to have again!!

Happy Snap?: my 67th b’day: 30/11/16. Upper teeth seen are those made by a bridge/crown over 5 of my front teeth. My mouth was already irritated in the back of this area. Had been for at least 2 years.

 

I recall being quite concerned about how I would deal with feelings if I could not eat. Yes, I like to do that..and, over time, found that I still can but I am actually dealing with feelings better than I used to! Who knew!

After surgery on 6 July. I was told I would have a drip and a feeding tube inserted naso-gastrically and that I would not have any liquid until at least 7 days were up so that the area that had been added to my inside of my mouth was deemed to have sealed and be ready. OK. I did not argue but I did not like the feeling when the feeding tube would fire up and deliver the prescribed nourishment. In fact I used to think it might be regurgitated but it never did. After I left ICU and was in my own room, the amount I was fed ramped up and I had to change my attitude towards this feed. I decided I could deal with the amount of time – up to a few minutes it took to feed me because it was helping to heal me.

Feeding Me To Heal Me became quite the mantra which I used a lot at home too. My psychologist had told me that patients who have head and neck surgeries have a changed relationship with food and that it cannot always be enjoyable as it is like a medicine we need to heal.

I came home on the 10th day and my dear husband already had shopped with the list of what he knew I could eat and we thought: YES, we have got this! Not so. You see, as the patient who was still very much learning to eat again, I thought I could direct my husband to sort out the food I could eat. It did not work well as I was still highly emotional, on a very strong anti-biotic to ensure my leg wounds did not become further infected. In short, adjusting to eating when I couldn’t really eat (and was hungry) and found that my gut was rejecting everything via diarrheoa meant my early days (and nights at home) were a bit challenging. And I was wanting to do stuff for myself. My goodness. I know.

My hospital dietitian had sent me home with samples of high protein drinks, I was given sheets with lots of information about soft and pureed foods and I am a compliant person. I must do this. Right? Well, actually my body said NO. My GP told me just how much I needed to let my (IBS-centred) gut settle after being empty for over 8 days and it needed to come back to balance. His sensible approach saved me and whilst I appreciated the knowledge that was shared with me it was time to eat what I could and when I could.

I admit that with having my right leg encased in a boot and the stitches from surgery had only just been removed as well as two large flesh areas that needed healing I did my body no favours by deciding to make some chicken and vegetable soup one morning. You see, I have always been the cook and I found that if I had to instruct my husband our marriage might not last (OK, an exaggeration) and I needed some sense of independence.

Once I had that soup sorted and blended and in the freezer for future use, I agreed to stay out of the kitchen…and my darling husband became the best every toast maker and cutting it into teensy tiny pieces to see if I could eat it. He even made me vegemite toast just so I could lick the taste of it. I learned that yoghurt and honey go down easily and they helped me when I had to take oral medication as did jelly.

The early days and weeks were hard but I was also buoyed by the fact that in all likelihood my cancer had been completely removed. On a follow-up visit 3 weeks after surgery both the Professor and the Associate Professor agreed with no recommendation for follow-up radiotherapy as it has very brutal effects on the face and would change the view of cancer has gone from 95% to 97.5%. 

Part Two will be more on how I gradually learned more about the how and what I could eat…and how it is so vital that we both nourish ourselves with food as well as enjoy it.

If you have any questions, please ask in the comments. Happy to respond.

Denyse.

Joining in with Kylie Purtell here for I Blog On Tuesdays and with Sue here for her Wednesday link up & Leanne’s Lovin’Life Linky on Thursdays here.

 

 

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