Thursday 24th January 2019

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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Appreciation In August. #3. 2018.76.

Appreciation In August. #3. 2018.76.

My Alphabet of Appreciation FOR FOOD This Week in August 2018.

Some readers know that I have been without any teeth on top since my cancer diagnosis in May 2017 and after radical surgery in July 2017 a whole new inner /upper mouth was created and once I got home after 10 days, I needed to learn how to feed me. So much is attached to food: texture, tastes, preferences for savoury or sweet, crunchy food or smooth but I have been limited. Very much. It has been a big lesson for me in patience, creativity, adapting and making the best I can of the reason I had to do this hard work – cancer. The list here is all of the foods I have been able to eat. Often they are not in quantities I may have consumed pre-surgery as my mouth gets tired (and I get bored) with some food rolling around in my mouth for ages.

In a week or so, I will have had new top teeth added and I have no idea (yet) how this will be. This for now, is all I appreciate that I have been able to eat for the past 14 months.

A.

  • avocado – in all manner of way: by itself and added to dishes.
  • apple: I have tried many times with apple – grated but it is too hard to get it swallowed as I cannot (yet) chew.

B.

  • bread – no crusts but can eat white or wholemeal as a sandwich, or small pieces into soup
  • biscuits – dipping ones: malt, orange creams, plain biscuits. I have tried “choc covered’ ones: messy! I miss savoury biscuits as I cannot bite nor crunch
  • butter – my preferred spread and it is needed to help food like bread go down
  • beef casserole with chuck steak cooked all day – meat melts in my mouth

C.

  • cake – my homemade cupcakes with icing and those from my friend Kyla’s shop
  • coffee – double shot latte when I go out, and I keep a range of packet coffee mixes here
  • crumpets – can be cut into 4 and spread with butter and honey, I can pop the soft part in my mouth and leave crust
  • cheese – kraft blue box cheddar, tasty grated cheese and parmesan grated
  • carrot – cooked and then blended and added to bol sauce, soups
  • chicken noodle soup
  • chicken mince made into sweet and sour dishes
  • chicken cubes cooked and made into a casserole with cream of chicken soup

D.

  • dairy milk chocolate

E.

  • egg (scrambled only) with C for chutney on B for buttered T for toast

Some photos of some selections of the foods I ate in the early days. 

F.

  • fish – in the form of S for salmon in tins & smoked salmon in small pieces for lunch in summer
  • fruit – very limited. See P for pear, M for mango
  • fillet steak – cooked medium, and cut finely, with some sauce for flavour, added to 2 min noodles.

G.

  • grains – nope. They stick in places in my mouth and cannot escape.

H.

  • healthy choices. I make as many of these as I can each day knowing how much my recovery and wellness needs.
  • honey : good with plain yoghurt when I first came home from hospital last year
  • spread on crumpets

I. 

  • iodised salt is a daily condiment to aid flavour since I think my taste buds are slightly changed
  • ice-cream. Not a huge fan but it soothes my mouth after surgery and vanilla is my go-to.

J.

  • jelly. Oh so much jelly when I first recovered after major surgery and sometimes cooling and soothing after smaller surgeries. In a little container. Sometimes with I for ice-cream.
  • jam. Adding some flavour to a toasted muffin. See M for Muffin and how this is eaten.

K.

  • kale K for kidding. I can eat NO  leafy veges or salad other than what I list elsewhere

More foods from my challenging eating days. Imagination and creativity helps me with meals.

L. 

  • lettuce in teensy tiny cut up pieces added to my taco bowl or a sandwich with vegemite and cheese

M.

  • mango – could eat cut up in a bowl using a spoon. It was a great addition to lunch in Summer.
  • minced meat. How I learned to love you and cook with you for me:
  • minced beef: spag bol, savoury mince, taco mince
  • minced chicken: as above
  • minced lamb combined with the minced beef has made the best savoury mince to date
  • minced pork: a version of san box choy – just the seasoning, and the mince and on some 2 minute noodles
  • muffin: toasted white one: I can spread jam on a buttered one, cut into quarters and eat the middle part, leaving edge
  • milk: in coffee and tea and on my breakfast every day. Before the first surgery I was not a fan of cereal and milk and now I am. See W for Weetbix.

N.

  • noodles – see above: 2 Minute Chicken Noodles added to meat dishes. I have to cut the noodles with scissors before eating so I don’t choke on a long thread!

O.

  • oranges – cut and squeezed and drinking their juice

P.

  • pasta – the spaghetti variety – cut up and sometimes tube one – but needed to be well-cut for swallowing
  • pumpkin soup – over it. So over it. Yet because it “is” a vegetable and healthy I had made and eaten this a lot.
  • potatoes –  as long as they are  mashed and buttered they went down well on top of my savoury mince.
  • pikelets: these are great with some butter and a spread. Warmed even more so.
  • peanut butter: sometimes on bread and sometimes on a toasted muffin.

 Q.

  • nothing comes to mind for Q.

R.

  • roast lamb dinner. Ok. Three times my dear husband cooked this and it was delightful, drowned in gravy and with burnt baked pumpkin and potatoes
  • rice. Oh how I have used rice: white: fried: and it is a staple that I can generally ‘get down’ with a meat/fish in some kind of sauce.

Meals and more meals. Dinner was easier than lunch often. 

S.

  • sweet potatoes have been good, blended with regular potato and added to meat dishes as well as soups
  • soups. I know they are good for the body and soul. I made many: chicken and veggies, ham hock and veggies and each was blended and frozen for future consumption. I have a range of packet soups on hard always. I can only eat (and have always preferred) a thinnish soup. Not thick at all.
  • sweets. I can eat some very soft sweets: this has been in recent months: milk bottles, strawberries & cream, pineapples.
  • sandwiches. I know that they are hard to get down but I do because I missed bread. So, the fillings – spreads or cheese or salmon need some butter or condiments and then I cut off all the crusts, and then the sandwich into cubes. I can now get down 8 rectangles. Before the past month or so it was 16 squares. Takes ages to eat.

T.

  • tomato condensed soup from Rosella in the can, with milk added is a comfort food from childhood and it gets a run regularly.
  • tomatoes. I long(ed) for the taste of tomatoes but their skin made eating impossible. Lately though, I have bought small vine grown ones, and I cut out the middle with seeds and juice and that goes on a taco or even a crumpet for a savoury taste
  • tacos came about when I was looking for NEW tastes. I make up the taco mince with the powder and freeze the cooked portions, making myself ‘taco in a bowl’ with added: tomato & lettuce (see above), tasty cheese, avocado, lite sour cream.
  • tea: cups of …and often with biscuits I can dunk.
  • toast…is eaten rarely but I have tried it in very small squares with some creamed corn on top and eaten with a spoon as well as with scrambled egg.

U.

  • unhealthy but delicious at times: treats that I “can” eat when I am out: bits of donut edges, some cakes with no nuts and some icing, a part of a scone with jam & cream. Chocolate: including latest I can eat: freckles.

V.

  • variety is what I try to have but it can be V for very hard some days and I just retreat to ‘old faves’.
  • very good advice from the dietitian before I left hospital in July 2017 was to aim for enjoyment AND nutrition in my meals and snacks and I do remember that often.

W.

  • water. I always have water near me and particularly when eating. I have not choked but water is a good lubrication in my mouth anyway so I have sips and swigs during my meal
  • weetbix. Who knew? Before surgeries for cancer I rarely ate cereal. For the past year it is my standard and ONLY breakfast: 2 weetbix, some sugar (oh come on, I cannot do these plain) and lite milk. And I will continue this breakfast when I have my teeth and it is a healthy one.

X.

  • of course nothing starts with X in this list but I will say taking eXtra care before attempting to eat food, and not talking as I eat (before surgery Denyse did) helps my food stay IN and then go down.

Y.

  • yellow foods: cheeses, butter, custard are dairy-based and they are part of my meals and snacks and I try to have
  • yoghurt in the fridge most weeks so when I feel like I need to be ‘virtuous’ I have some.

Z.

  • zooper doopers are always in the freezer. They are awesome post mouth surgeries but need to be cut into small, manageable pieces as I cannot suck. Seriously, not even using a straw with success. Unsure if this ability will return.

Treats have become a daily event but in limited quantities. I have remained around the same weight for the past 12 months and wish to stay that way. Increasing activity now I am very well is helping. 

 

I hope you did not get too hungry reading this!

Denyse.

Linking with Leanne for Lovin Life Linky on Thursdays here.

 

 

 

 

 

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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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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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