Friday 20th April 2018

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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Learning To Deal With Uncertainty Via Cancer. 2018.28.

Learning to Deal With Uncertainty Via Cancer . 2018.28.

In the past four years I have been on such a long and hard learning experience.

Perhaps I am short-changing that time frame.

Possibly it has been since 2003 when I had to resign, for medical reasons, from my substantive role as a K-6 Principal.

However, in May 2004  I was deemed well enough to return to teaching duties only and that was fine by me because I actually missed schools!

In my working life in N.S.W. public schools from 1970 until 2010 I liked the certainty:

  • of the school day,
  • the rhythm of schools
  • and the fact that my work life was timetabled
  • and I could work knowing I had familiarity and knowledge.

I now modify the above by adding: no school day was ever the same and of course there were many uncertain times and experiences but they were all familiar and I understood them well.

In the years following my retirement from teaching in 2010 up to 2014 I decided that helping families learn more about transitioning to school would be good and set up a solo education consultancy. There was some certainty in this once I found a group of early childhood centres who were not only interested in my work, but would pay me a fee too. Win!

In 2013 I was fortunate to meet then Prime Minister Julia Gillard who thanked me for my work in education.

What changed for me and how did I HAVE to learn to deal with uncertainty?

Three major triggers during 2014 and into 2015.

  1. Deciding to sell our Sydney home of over 18 years, pay off the mortgage and other debts and move to rent a place on the Central Coast.
  2. Resign or down-grading my employment status in education: teaching at Uni, having my business and remaining as an observer for (then) NSW Teachers’ Institute.
  3. Leaving the families of our adult children and their children with whom we have loved and connected from 1996 to the present including daily child-care before they started school.

I have written about them before, but the memories of those times appear in my ‘on this day’ in Facebook and in ‘time hop’ so I see and recall them usually with a sickening thud to my gut. But then because it is NOW in 2018 and I am learning much more about how to manage uncertainty I am able to counter it!

Sign Above Where I Blog. B.Be Brave O.Optimistic L.Learning & Loving. D. Determined Denyse.

Where were we?

The rational and thinking brain does not  know why because it was logical back in 2014 and KNEW the decisions we were making to commence what felt like a proper retirement for us both were right. We needed to have no more debt. We wanted to live away from Sydney. We had been told my our family that childcare was no longer required.

The thing is, I found out in many hard ways that I had created a situation (or actually more than one) where my inner soul and feelings were in conflict with my brain choices. I spent all of 2015 trying to make sense of it and until a psychologist told me: Denyse, feelings take a lot longer to catch up with decisions and change, I felt I was doing it all wrong!

And in some ways I was.

I was ignorant of so much. I finally accepted the sadness and grief that enveloped me for that year. I actually thought things would improve for me when we moved house at the end of 2015 but it was short-lived. My brain was now on super alert setting and affected my decisions and my life. I tried medications (no, none helped) and meditation (a little bit helped) and walking and art too.

But it was not until I started learning more about the Buddhist way of living in the now, as it is all the certainty we know from teachers Pema Chodron, Jack Kornfield, Tara Brach, and Anne Lamott  more that I clicked:

OH. I cannot control anything really.

At all. I can control my responses.

A big gap was closing in my learning. My husband had been doing his level best to enlighten me but I was not ready. Or, I was obstinate and wanted proof!

So for all of 2016 I continued to ‘try’ to accept things but then I would revert to the default in my brain and work on all the ways “I” could control life. This did not make a happy Denyse even though I felt I needed to look like I had things under control. Ha! My Irritable Bowel Syndrome told me in its very special way “no you do not!”.

Into 2017 we (my brain and my feelings) went… and matters worsened. And I hated how reclusive I became. I rejected ideas of trying exposure therapy because ….no control!  It was a to and fro between head and heart (with the gut in the chorus) until matters changed dramatically.

Late March – early April 2017.

I HAD to follow through with using graded exposure therapy to get my awfully sore gums and teeth sorted. I did.

It felt a bit better and when my new local GP met me and suggested a small dose of an evening anti-depressant from the ‘old school’ which would help ‘firm up’ my IBS issues, I trusted him and gave things a go.

THEN. May 2017.

I had a biopsy, I thought something serious was wrong in my mouth post teeth/bridge extraction and I was right. Squamous Cell Carcinoma in my upper gums and away I went on the cancer journey.

WHAT DOES HAVING CANCER HAVE TO DO WITH UNCERTAINTY?

Everything for me. I had to change so much in terms of my ill-founded beliefs that I could control my life.

Nope. That was a BIG lesson.

What I did learn, and have  learned every.single.day. since May 2017 is that I need to trust those who care for me and provide their services as they know more about this cancer of mine than I ever will.

This does not mean I surrender because no-one does that without thinking. What I learned about myself is that I can get through some very tough times (I did and have) because I can let time pass, let my body heal in its way and take the advice of those who are experts in the field where I am not.

Of course I ask questions! In fact, I sent off about 20 before my huge initial surgery in July 2017 but I had a much greater sense of security in having met the Professor and Associate Professor, the Prosthodontist and the Practice Manager. No-one seemed to mind my questions and it was clear to me, that by asking I was helping myself be better prepared for not only cancer surgery but for the relative uncertainty in the life ahead.

On Thursday last…waiting for the next part of the treatment. Selfies rule, right?

And now, into almost the fourth month of 2018 I am now driving myself to the prosthodontist appointments in Westmead and managing my physical and emotional health whilst doing so…and in between visits and surgeries I am doing the best I can to stay well and do as is required for my continued health.

I am letting uncertainty into my life as a gift for what it teaches me:

patience

courage

confidence

trust

I have said, more than a few times, that this cancer diagnosis (and subsequent surgeries and treatments) has helped me get back a Denyse I really like being and a person who is more out-going (as I used to be many years ago) and one who is more loving and giving to others.

What lesson(s) in life have you learned about yourself?

Do you have any issues with surrendering control?

Tell me more in the comments if you are prepared to share!

Denyse.

Joining with three generous and sharing bloggers who host link ups:

Kylie Purtell here for the I Blog On Tuesdays link up.

Sue L and Leanne L  here who host the Midlife Share the Love Linky Party on Wednesdays.

Leanne who is the sweetest hostess here on Thursdays for Lovin’ Life.

 

 

 

 

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Out My Window I See. #LifeThisWeek 12/52. 2018.25.

Out My Window I See. #LifeThisWeek 12/52. 2018.25.

I have struggled with this title.

I wanted to make it short and pithy but to do so, I omitted of.

Grammar nerds, do you forgive me?

So, out OF my window I see……

Not much but for me, it is plenty to see.

This is the view from the window in a bedroom of the house we are renting.

It has a double bunk set on one wall for the rare occasions we have anyone sleepover.

The rest of the room is devoted to my creative pursuits: writing, journalling, art and crafts of many kinds.

It is when I am seated at the large desk with hutch (that’s the containers of brushes etc in the shadow) that I look out here on:

  • the covered verandah of this house
  • our outdoor setting which gets used rarely now
  • the flags of ‘buddhism’ sayings that hang under the umbrella of the outdoor setting
  • a fish windsock/mobile
  • some chimes (one is bound as it is very noisy!)
  • rainbow mobiles hung from the umbrella
  • an outdoor clock
  • a hanging mobile on the clock
  • the house next door – which is fortress-like* and we only see the man who owns it occasionally as he works for a security company*.
  • some trees from houses nearby
  • some little parts of the sky

I have used this space since we moved here in November 2015 and it has seen some sad times for me. I have used this place as a space to listen to CDs to help me through very challenging times and to meditate too. I have used it to make crafty items along with visiting grandkids when they come on rare occasions. I also use it every day for a creative activity such as painting, mandala-creating and journalling. It is a great room as I have access within arm’s reach from my office chair to all the materials I need.

However, on many occasions I like to just view the outside and think and remember.

The outdoor setting was at our house at Glenwood and was used every day for creative play when we cared for our younger grandkids and it was also the space around which the family sat for barbecues and parties for birthdays too.

The outdoor clock was on the fence at Glenwood and the grandkids loved it. The hanging mobile is a car carrying a surf-board I bought for my grandson (his sisters had fairy ones!).

The buddhism flags are there for me to look at and remember what is important and for them to just ‘fly’ is lovely.

The windsock fish was bought by me at a toy store after a significant breakthrough in my sessions with the psychologist in 2015.

There it is.

Out OF my window!

What do you see out of YOUR or any other window?

Tell me in the comments!

Cheers,

Denyse.

Joining with Alicia here as it’s her Monday linky called Open Slather.

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 is the optional prompt’: 13/52.  “Story of My First Name.” 26.3.18.


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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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My Last Meal Was. #LifeThisWeek 11/52. 2018.23.

My Last Meal Was. #LifeThisWeek 11/52. 2018.23.

When I made this prompt up initially it was “My Last Meal” but that conjured up those of prisoners who are about to be executed (yikes) get to choose their last meal. I have wondered, as you do, how on earth ANYONE could actually EAT before they were led off…anyway, I need to lighten up…and here we go.

It’s hard for me to write about a meal in actual fact . I can have meals of course and I have written about what it’s been like to eat after cancer surgery here and tomorrow is the part two of that series.

It’s really been more than a year since I have been able to chew or crunch with success. My upper front gums were very sore and inflamed before we knew it was cancer. See here if you are new and missed that post back in May 2017. So even before Christmas 2016 I was seeking food that was softer.

Onto the now.

I cannot cite my ‘last meal’ because I am writing this pre-Monday. Every day for many months I have had two weetbix and milk for breakfast. Before I discovered I actually did not mind weetbix I was struggling to get something resembling toast down. I no longer try that. I can’t. Yet.

But here are some main/lunch meals I eat now with 8 front lower gum teeth and my strong tongue!

Each of the above requires a lot of time (I used to be a 10 mins and it’s eaten girl) and concentration so I do not overfill my mouth and can swallow with ease.

I always have water near me to help the food go down and for me, a long-time talker at meals, I try not to chat and to get my food down safely. I have been fine to date! I have had to use my ingenuity in this LONG (over 8 months now) post-surgery journey as I miss variety, textures and tastes.

Each of these was borne of my need to have all of those within my limitations.

I am quite proud of these. But will be glad in a few months when chewing and crunching may return!

Here’s two meals I had in the past that I will be looking forward to have again. Simple but nutritious and very comforting!

Now I realised “this” is not a meal. But oh my gosh it is both comforting and delicious and I do not have F.O.M.O. when I treat myself to this!

As I cannot bite into a donut, I break off tiny pieces from the BEST BIT, the edges and place them in my mouth. I leave the middle ….I never liked that much anyway.

I wonder what your last meal was….I must say I have stopped being envious of people who get to eat what I cannot yet as it was not helpful to me or to them.

Eating food we like is such an enjoyable event I would never want to put someone off theirs!

Here’s to eating well!

Denyse.

Joining with Alicia for Open Slather here…and let me say, some of her food pics are wonderful and almost everything is home-grown!

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 is the optional prompt’: 12/52.  “Out My Window I See.” 19.3.18.


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Everyone IS Creative. 2018.22.

Everyone IS Creative. 2018.22.

Recently I heard Brene Brown say on the CD of her latest book Braving The Wilderness two things that stuck with me about creativity.

One: she was THAT kid told by her teacher that she couldn’t do art. Her art sucked. As a result, Brene never ever tried again. Until this:

Two: her findings were that the best way to embed the learning in her courses was to integrate them with creativity.

Mind.Blown.

I have taken some of her on-line courses over the past two years and each has a component of journal writing, decorating a page of photos, adding some pictures that inspire and so on. In other words, the head learning becomes embedded with the heart learning.

Source: Brene Brown

My Back Story.

I cannot recall doing anything creative at home like drawing or colouring but I recall coveting the brand new Textas (so colourful) around the time I was in Year 6. I loved the geometry lessons which taught me how to make a flower with a set of compasses. That learning comes back to me every time I make a mandala. I went to High School and would have loved to do Art as a subject but I was advised to follow an academic pathway. Never mind. I had fun decorating diaries, school books bags and so on. I could not draw well but I loved patterns. Still do.

My mum was a colourful and stylish dresser and I am pretty sure I learned that from my observations and my innate creativity. Mum was not educated past age 15 but she was a wizz at cooking and baking. Loads of people were delighted to receive her goodies. I saw creativity in the way my parents’ made their gardens and how Mum arranged flowers.

Into my teaching years, particularly with the children under 8, I loved creating colourful and stimulating classroom environments with my ideas and their art. I found teaching in a space like that was great. However, over the years, I learned that some children do not need a lot of visual stimulation to act out so I amended how I did this.

Over The Years.

Teaching probably kept me as creative as I needed to be until it was time to have a break. I was non-teaching for over 20 years so I went to scrapbooking classes, learned how to make Christmas decorations and went to a term of learning how to observe doing drawing with pencil. I did buy a lot of products over the years and my grandchildren who came to us for care each week got their share of use with my paints, paper, scissors, playdoh and so on.

It actually surprised me not long ago to find that after my visual preference as a learner comes kinaesthetic so I guess I got a lot of that with the cutting, placing and pasting I was doing.

Of course, I also cooked and decorated cakes with icing (still do!) but it really wasn’t until I was permanently retired that I saw that my creativity extended to art-type activities, photography, blogging and making memory books. Then as my outer world shrank as I no longer worked nor cared for our grandchildren something needed to happen.

I needed more. I needed something. As it turned out, I needed to make, to practise, to try and to have some fun.

Every.Single.Day.

Some famous people said this about creativity:

I asked my friends on Facebook about creativity and was delighted that not one person who responded said “I am not creative…” well, a few may have said “I don’t see myself as creative but I do….”

Here’s the list from those people.

  • Blogging
  • Creative writing
  • Graphic Design
  • Playing a musical instrument
  • Doing colouring-in and dot to dots for adults
  • Making my garden
  • Dressing each day and adding accessories to suit
  • Sewing
  • Cooking and Baking
  • Scrapbooking
  • Photography
  • Making Photobooks
  • Journalling
  • Art
  • Drawing
  • Ceramics
  • Planning Family Outings and Events
  • Making costumes for dancers
  • Creating websites
  • Talking on radio
  • Dancing
  • Making Slime
  • Card Making
  • Singing
  • what about you?
  • what are your creative pursuits?
  • there are more than I have here I am sure! 

 

Thank you all who contributed. Here’s a few pics of my versions of creativity.

So, how are you creative?

And  sorry but “I am not creative” is NOT a reasonable answer!!

Thanks for joining in.

Denyse.

 

Taking part in Tuesday’s Link of the Day called: I Blog on Tuesdays with Kylie Purtell here.

And on Wednesdays I link with Sue and Leanne here for Midlife Share The Love Party.

Then comes Thursday: Thanks to Leanne we have a beaut linky called Lovin’ Life here.

 

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My Cancer Surgery #3. 2018.20.

My Cancer Surgery #3. 2018.20.

Since the diagnosis of cancer in my upper front gums and partially on the inside lip on the right hand side in May 2017 I have had three surgeries. The first, on Thursday 6th July 2017  has been written about in detail and in 3 parts…because it WAS huge!

Here are the links: Part One, Part Two, Part Three.

And over 4 months passed as a lot of healing needed to happen in my recovery at home. My leg was cared for by the Community Nurse who visited for 8 weeks over a few days each time, and my mouth, well it had to heal over time. Before the next surgery there were visits back to Chris O’Brien Lifehouse and to Westmead.

Then I had the second surgery. It was at relatively short notice and was for Day Only stay. So different to last time. But do read the post if you have not because it was a hard start to MY day with my husband driving me down on the same day.

Moving right along now to Cancer Surgery #3.

Again there was a long gap from the previous surgery to this one, but in this case let’s “blame” end of year and January …and that is fair enough because everyone needs a break. And my surgeon sure did! As did the team. But before this surgery and for some weeks in December and January we did not lose touch because as the ‘flap’ inside my mouth healed it was a bit unruly and decided to do things its way so we (ok, my husband) had to take regular photos INSIDE my mouth and send them to Professor Clark. And ‘things were OK’ he said so I managed to take my worry hat off.

I had better understanding of what would happen in Surgery #3 and as my husband agreed with my wish to drive down the night before it was a smooth start the next morning at 6.30 a.m. on an early February Sydney day to walk to Chris O’Brien Lifehouse to present me to pre-admission.

The pre-admission room and beds were full! 7th February was a popular day. This time my husband left me to go back to the apartment where we stayed overnight when I went to theatre. No waiting in the anaesthetic bay for an hour this time…I was ‘first’. Yay. Chatted to the same anesthetist from last surgery, also to my oral restorative dentist and once wheeled in and shuffled onto the bed, chatted oh so briefly to my surgeon.

Back in my waiting space within 2 hours….dressed in an hour…and we were on our way home (2 hours away) arriving there some 5 hours after I started surgery. There was ONE big surprise. How I looked!!

The ‘look’ was the foam squares (they were holding a stitch each) to add some movement but also stability to the stitches that were making MY NEW upper lip…from the skin graft from surgery #2 that was taken from my right thigh. I know, my body is a GIVER!!

The other part of the surgery was to add some ‘abutments’ – screws – to the gum/jaw area to allow for the skin there to keep healing BUT to add a cover – like a mouthguard called a stent – to protect this area.

Oh my goodness. That did fill up my mouth let me tell you, and make eating (and drinking coffee!) particularly challenging. In fact, I literally dipped my foam into a cup without realising (Initially I thought it was blood but it had a coffee aroma!) so I had to be very careful.

The foam – with stitches in –  also prevented me from washing my face and hair so my dear hub learned how to help do their hair wash over the laundry sink with me holding a washer to my face.

It was only a week of being like this as when we returned to Sydney for the check-up the stitches were removed AND the area in my mouth indicated that it was time for a visit to the Oral Restorative Surgeon to start planning the implanted teeth program.

Foam Blocks gone. Mouth very swollen due to stent and surgery.

Update #1.

On Friday 23 February we drove to Westmead to have the stent looked at and the condition of the gums. I was a little nervous as my mouth was stinky (food particles under the stent) and my oral restorative dentist had a broken hand and his colleague (who had attended each of my surgeries) would be undoing the stent and examining the gum with my regular person viewing and commenting.

Firstly, the precision with which the stent had been drilled into the current abutments was spot on and as each was loosened the stent eventually yielded and that stinky thing was GONE. The nurse and the specialist dentist did an amazing job of cleaning the area and as they always do for my visits, photos of the inside of my mouth were taken.

The BEST news was that the gums growing around the 5 abutments are doing as expected and there was now no need to put the stent back on. Phew. Phew. Phew. But now what? Well, I have my gums and abutments on display and have been given all the care instructions I need.

I will be returning to Westmead in 4 weeks to have a temporary prosthesis put in if all is well. 

I hesitated about publishing the photo of my mouth but then I wanted to explain it more:

The little silver things are the abutments with caps on – there are 5 – and they started off being attached to the fibula bone from my leg which was cut and made to fit my mouth*. I have only 5 abutments when they were hoping for 6 but my fibula bone was too narrow in one spot and broke. The redness is OK and the area above the ‘jaw’/gumline is the ‘flap’ which has been harvested from my right leg *and has been cut, stiched and used for different purposes such as burying a skin graft** to make my ‘new lip’ .

Update #2.

Whilst my dental team thought my gums were going well it was when they shared the photos from Friday with my surgeon, Professor Clark,  he saw some small issues with the gums that he thought will benefit from at least another week with the stent in. So….back to Westmead this Thursday for that. I understand the need to make things right and trust my team implicitly!

* part of surgery #1 ** part of surgery #2.

This will be the second last of Cancer posts for a while. I appreciate that there is support for me as I go through this but I also want to update readers too. However, the remaining post, Part Two of Eating after Gum Cancer Surgery will be published in two weeks. Unless there are good reasons for updates, there will be a cessation for a while. Thank you for your interest.

Denyse.

Joining with Kylie Purtell here on Tuesday for I Blog On Tuesday.
Joining here with Leanne for her Lovin Life Linky on Thursdays.
And I will also join with Sue and Leanne here for their Wednesday Link Up.
Thank you all for hosting!

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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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