Tuesday 18th December 2018

Two Steps Forward. One Step Back. My Cancer Recovery Update. 2018.126.

I am dedicating this post to the memory of a lovely woman whose life was cut too short by cancer. Chelsea, my friend Leanne’s step-daughter lived life to the max. Cancer may have been ‘in her’ but cancer did not take her spirit nor her love of life…and for her family including her husband and your daughter. My shared experience with Chelsea was that we were both patients of Chris O’Brien Lifehouse and because of that connection I wrote one of the Letters to Chelsea Leanne mentions on her blog.

Thank you for sharing the love and the life of Chelsea dear Leanne.

 

Two Steps Forward. One Step Back. My Cancer Recovery Update. 2018.126.

Update to update: even though I have outlined what was disappointing to me in this post which was an event from last weekend it has also taught me more about my capabilities in eating than I knew. I like many had tended to think eating with new teeth in my gums would be ‘back to what it was’. Not so, and I am now being more realistic and flexible.

Yesterday, 30 November, I turned 69. I had a wonderful and low key birthday celebration at a morning tea for two with my dear husband. We chatted, ate well, had our favourite drinks – small latte with an extra shot for me and English breakfast tea for him. Afterwards we wandered through the grounds of this lovely nursery, bought a plant each and came home to a relaxing afternoon spent at home. It really was just as I would have liked.

Except for this:

  • it has taken me sometime to adapt to some extra teeth added to my own on the lower jaw and I am very conscious of how much ‘saliva’ escapes and am constantly wiping – especially if I am talking…and drinking/eating. But with my husband or by myself I just get on with the ‘tidying up’ and enjoy what I can
  • I know my upper lip is shrinking in. I accept that. But, did you know you cannot ‘blow out the candle on your cake’ unless you get much closer…and I also cannot drink with a straw as there is no vacuum made in my mouth
  • I have a small but significant pain area in my….index left hand finger…the dominant one..the one where I write, draw and play. I have had pain in the tip of it before, as there is significant arthritis in the joint below. But not as bad as this. Our G.P. could not see anything affecting it from the outside, so he advised anti-inflammatories for a few days.
  • both of the above are so small, in the overall scheme of things I know, but I am writing about them (not using the left index finger!) because they have both given me cause for concern today especially.

Out Socially for Lunch.

  • Last Monday I had lunch at Chris O’Brien Lifehouse and was asked what I could eat. I nominated a simple cheese white bread sandwich and a lemon slice I had tried there before. Whilst I did not eat more than half of the cheese sandwich, I managed and did not feel as self-conscious as I thought. I also took my leftovers home! Win.
  • Today, I ventured to a local large club for a Christmas lunch get-t0gether with the Head and Neck Cancer group I am in. It was the first time I have gone out for anything other than coffee and cake. I gave it my best shot. It is a very friendly group and I did get to know people more today in this social setting.
  • What I found though was a reality check for me about my current status in recovery as a Head and Neck cancer patient.
  • Knowing I ‘could’ have taken the easy way out and ordered a safe coffee and cake that I knew I could handle, I decided to join in and actually have lunch! Remember I have only ever eaten a meal at home for over 2 years.
  • At the ordering desk, I asked for a small meal: I could see a baked dinner was on offer and was pretty sure I could manage some meat, potatoes, pumpkin and grave. “No”. Sorry,  we do not do small meals on Saturdays. “Can I have just one slice of meat with a couple of the vegies?” “No”. No offer of a kids’ meal (I think they would have refused that too) so I asked could I have just the potato and pumpkin and gravy. “Yes”.
  • OK. I thought, well this is a lesson. Not everyone ‘gets what they think they can’ and also maybe this establishment does not cater for people with different needs. And, I stayed quiet about it. I was a guest. Everyone else at the table was either way down the cancer recovery trail than me or could find foods to suit them.
  • I could eat one half of each vegetable and then as it takes me a while, it got cold. I had leftovers and asked if I could take them home. “No”.
  • I went and got a coffee later, no cake, chatted some more then drove home and ate….some lunch.

Why Write This?

  • It helps me to process it and maybe others who know what I am talking about can understand
  • The fact that I may have given myself something creative to do over the past 3 days as I needed to has not helped my mood much. I really miss using my finger.
  • I am hopeful, that by being patient and having the meds it will come good. Or I will go back to the G.P.
  • I am concerned I over-expect of myself, so writing this is helping me process
  • Maybe I just needed to ‘get it off my chest’ as they say!
  • It is not a post where I am wanting any sympathy but I did get insight into a world out there today that, in some respects, has no flexibility to meet special needs
  • I also know people face this as a challenge every.single.day
  • I am wondering if my ‘reaction’ was a bit of an over-reaction to a day which I had wanted to go well, and in terms of socialisation it did.
  • But it came up short for me, the head and neck cancer patient getting used to eating again in a regular environment, and so I wonder if I need to be more prepared for the situations I place myself in as I change from ‘no eating’ to ‘limited eating’ to ‘regular eating’.

It feels like two steps forward and one step back….but probably it is more like five steps forward and maybe one step back!

And maybe I will take a little container of my own next time for left-overs!

Thanks for reading!!

Denyse.

P.S. It IS most unusual for me to post on a weekend but for my emotional health I am…and I already feel better for writing it out. THIS is why I blog!!

Linking up with Leanne here for Lovin’ Life on Thursday…sending love to Leanne and her family. xx

 

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November Notes #3. 2018.119.

November Notes #3. 2018.119.

I have reflected and decided that…..my daily “outfit” photos will continue.

Initially I was going to stop at the 12 month mark, i.e. end of October 2018.

And then I thought, go to the end of the year.

A blogging friend said “stop doing it if it has served its purpose.”

This was good advice and then I considered what my purpose was and is.

  • initially it was to get a more confident me to have a photo taken and put it on social media. (Y)
  • then it became enjoying finding new items of clothing that fit and were ‘on special. (Y)
  • as it continued into the beginning of 2018, I set a challenge of “no repeating an outfit. (Y)
  • the above petered out as I began dressing for the situation each day and so needed to be mindful of the weather and where I was going. This has continued (Y)
  • to be noticed as someone who is/was prepared to be photographed during face altering cancer surgeries(Y)
  • sharing my images on line with many hashtags became tedious and I have a private account so #hashtags are not even seen and I stopped (Y)

What now?

I keep on. I do agree with my fellow Head and Neck cancer patient friends on-line and in real life that each of us needs a purpose each day and one of mine that is 99% non-negotiable is to:

  • dress with purpose
  • have a photograph taken
  • go out for a coffee alone, with my husband or meet up with a friend.

The following collages are from around March 2018 until October 2018.

Scroll through to some fun and other images…including one or two of the Instagram Photographer Husband.

Here’s a few more reasons why this will continue…for some laughs and to remind ME how far I have come despite a cancer which took away half of the inside of my mouth.

Thank you most of all the my partner in life for care, encouragement, saying “smile” to me, and loving me!
The feeling is mutual. This photo was before one of our Morning Tea ‘dates’ recently.

What do you do with purpose each day?

Have you been sharing what you wear on social media?

Tell us more!

Denyse.

Joining with Leanne (who is doing outfit shots and looks amazing!) here for Lovin’ Life linky on Thursdays.

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November Notes #2. 2018.116.

November Notes #2. 2018.116.

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

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

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

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

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

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

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

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

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

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

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

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

Eventbrite for Organizers's photo.

NOV5

Innovation and technology in cancer surgery

Public

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

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

Thank you to you all at Lifehouse!

Denyse.

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

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What I Have Learned Lately. 42/52. #LifeThisWeek. 2018.105.

What I Have Learned Lately. 42/52. #LifeThisWeek. 2018.105.

With a motto of “lifelong learner” there is always something I have learned lately.

In keeping with a lighter touch this week, here’s a random group of examples.

Example 1.

That even though it is around 4 years since I last made a powerpoint presentation, I remembered, over time how to do it!

Mind you, it is yet to be shown so I hope all the bits that need to be on the USB drive work. I will be doing the “show and tell” …not death by powerpoint I hope…this Thursday at the request of my local Head and Neck Cancer Support Group.

Example 2.

Party favour toys that look like they will work….often do not…and still I buy them. Sigh. No-one could get these going. Anyone remember the line in Blazing Saddles, where Mel Brooks is trying to make one work? That.

Example 3. 

Once I had my upper teeth prosthesis screwed into the abutments, I KNEW I had to follow the cleaning routine for mouth hygiene and gum maintenance. The best recommended tool was via a Water Pik. The top of the line one. It is going very well as long as I remember to press pause on the attachment before replacing it in the cradle. When I do not do it: water spout…and mirror and me covered in water as it keeps pumping.

Example 4.

Reluctantly (at first) I became involved with the various Head and Neck Cancer groups of support because maybe I was not ready or wanted to admit to myself I belonged. Now  I am and admit it so here is a copy of the latest patient and carer support book that I will be taking to the meeting on Thursday. Note the name: The Swallows. Something related to what many head and neck cancer patients have issues with way beyond treatment: swallowing.

Example 5.

You can never say never, according to the old saying. In my case, I cannot stop being a teacher. I also cannot stop making mandalas, so I got up the courage to propose teaching a small class of adults at the local library. The red tape that is part of local government ensured this took ages…but I did not stop hoping until no-one actually enrolled.

Then I learned another lesson:

Example 5.a.

Ask a local friend, and ask her to share the word. Now, this coming Tuesday my first of 4 classes starts!

Example 6.

Never be frightened to ask for help even when you think “I am being silly”. I do not have to let you into any secrets here but sometimes, even though we think we are going well, there can be a niggle or an inkling of something awry. So, I know to ask someone who can help me and then I know I get to feel better just for lightening the load.

That is my random list.

What have you learned lately?

Denyse.

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

You can link up something old or new, just come on in. * Please add just ONE post each week! * Feel free to go with the prompt for the week to add your ‘take’ on the prompt. Or not. * Please do stay to comment on my post as I always reply and it’s a bloggy thing to do! * Check out what others are up to by leaving a comment because we all love our comments, right! * Add a link back to this blog in your post somewhere. I don’t have a ‘button’ so a link in text is fine! *Posts deemed by me, the owner of the blog and the link-up, to be unsuitable for my audience will be deleted without notice. * THANK you for linking up today!

Next Week’s Optional Prompt: 43/52. Quick Meal Ideas. 22/10/18.

 


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Observations in October #2. 2018.104.

Observations in October #2. 2018.104.

Are we humans ever truly content with ourselves?

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

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

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

What made me observe this today?

My appearance. My weight. My changes.

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

Back to the present.

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

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

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

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

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

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

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

This lasted for a very long time.

Sharing My Image with The On-Line World.

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

#everydaystyle

#dresswithpurpose

#outfitoftheday

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

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

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

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

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

I began to gain weight.

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

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

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

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

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

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

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

Denyse.

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

 

 

 

 

 

 

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My Head & Neck Cancer 1st Anniversary. Pt 2. 2018.46.

My Head & Neck Cancer 1st Anniversary. Pt 2. 2018.46.

I recently wrote Part One of the Anniversary of my cancer diagnosis here.

The second part is actually a bit harder to write.

I am grateful of course for my cancer being taken via surgery but I seriously had no idea that to recover and be implant-ready would be up to and well over a 12 month period. This is because, as I understand it, bodies heal in different ways and react like that too. I also know that this mouth reconstruction of mine necessitates a lot of work by the multi-disciplinary team of medical, allied health and dental experts.

I am ever-grateful for this team.

With Prof Clark & Cate Froggat, Clinical Nurse Consultant & Surgical Assistant

I know that my Professor Jonathan Clark  leads the Head & Neck team and he is also working with the training of other doctors just as he learned as a resident with the late Professor Chris O’Brien at Royal Prince Alfred (RPA) Hospital. From the Westmead Oral Sciences comes  my Prosthodonist, Dr Suhas Deshpande and his colleagues including Dr David LeinkramDr Matthew McLachlan. Dr Deshpande’s Nurse, Ofelia has seen me through some emotional times and is a very kind person. Norma at the reception desk at Westmead Oral Sciences always has a smile for me and a welcome that’s bright.

Associate Professor Ardalan Ebrahimi was the first person I saw on May 18 2017 and who examined me and put together, along with Professor Clark what would be my BIG surgery in July 2017. A/Prof Ebrahimi was kind enough to respond to my 2 detailed emails pre-surgery and saw me post-surgery in 2017 along with  Justine Oates Head and Neck  Nurse Practitioner who re-dressed my wounds and ensured continuity of care once we were back home on the Central Coast.

In my 10 days post Surgery #1, I was cared for by a number of professional nursing staff firstly in ICU with Dr Tim  then on Level 9 North of Chris O’Brien Lifehouse where Jason was the NUM. I will single out registered nurse Roan as he cared for me most early mornings and made sure I got out of bed to get some sunrise shots!

From the Head and Neck team who were part of my first surgery was a team of doctors including Dr Laura Wang & Dr Rahaul Jayaram who saw me most days in hospital.  Allied professional staff  at Chris O’Brien Lifehouse were physiotherapist Leah ensured I could walk post July surgery after fitting my right leg with the boot, dietitian Jacqueline gave me lots of guidance for eating post mouth surgery and the speech therapist Emma made me drink a cup of water (ahh!) and speak ( not a hard task given my propensity to talking!) to ensure I was going well before leaving Chris O’Brien Lifehouse last July.

I thank the wonderful anaesthetists and anaesthetic nurses who ensured not only that I went to sleep  but that I woke up with no dramas. One was Dr Murray Stoken and another is Dr Paul Goonan. On 16 May I was cared for by Dr Stephanie McInnes. 

Of course I have the excellent and fabulous Cate Froggat, my Clinical Nurse Consultant & Surgical Assistant who is the gentle and smiling person looking out for me in the operating theatre and in post-op consultations.

How could I not mention Julie and Priscilla…a hug and smile each time I see them, those who keep all of us seeing Professor Clark organised with compassion and care.

Once I was home, as I have outlined before, I was also in the care of the Central Coast Public Health Community Nursing Team for around 2 months and Eileen was amazing with her knowledge and advice.

My dentist Dr Alistair Brown saw me for a mouth check last October and to clean the remaining ((and oh so important to me) 8 bottom teeth. He was the person who initially referred me to Dr Stef Calladine, oral surgeon,  who did the biopsy last May and broke the news to me over the phone that I had squamous cell carcinoma. I will always be grateful for her caring manner and more importantly for referring me to a place I had heard of called Chris O’Brien Lifehouse and to a specialist I had not, Prof Clark.

My GP. Dr Owen Greene. What a caring and understanding man he is. I saw him sometimes up to 4 times in a week when I was recovering from BIG surgery #1. He reassured, he checked on me and he continues to do so, letting me know you are doing really well. His office staff and pathology people ask how I am going tooIf I pop into the chemist next door, Tim the pharmacist is always asking how I am going too.

There are those that I cannot mention all by name but have been integral to my diagnosis, surgeries and recovery times:

  • staff at the various Imaging places in Sydney and on the Central Coast
  • staff at the Admissions Desk and Pre-Surgery Desk at Chris O’Brien Lifehouse
  • the nursing staff pre- and post-op in the recovery areas
  • my psychologist from the READ clinic in Erina saw me a couple of times and was most kind in her assertion that I was doing well without any more need for her services.
  • the social media account for Chris O’Brien Lifehouse @chris_obrien_lifehouse & the art programs at COBLH @arterieatlifehouse (Instagram)
  • those lovely people who welcome me to their coffee shops like Randa at Fibonacci Wyong  and ask after me, along with my fabulous hairdresser Tiffany, our great podiatrist Sean who came to the house to treat me when it was easier for me, and our Property Manager, Naomi, who was delighted to see me recently. Kyla who makes the most delicious cupcakes always asks how I am going when we catch up. In fact, I won a generous voucher recently and as cupcakes are something I CAN eat, this is just the best!
  • the Beyond Five Organisation: Nadia for her reaching out for me to help with publication of my story written by Kirsty. Check my photos here to see the fundraising ribbons. World Head and Neck Cancer Day in July 27. I wear my ribbon and blog about Head and Neck cancer because not many people know about this cancer. I do now!

Then definitely NOT last nor least are my friends and family. Those who connect on-line too. My blogging friends, my instagram friends and those from Facebook and Twitter. I love connecting!  To know of so much love, concern and care being out there for me after the diagnosis and through recovery in the year it’s been is marvellous. Thank you for reading my posts, checking out my Instagram pics and ‘liking’ the blog Facebook page.

Each day in 2018 I made a commitment to myself to do at least these three each day:

  • get dressed in an #outfitoftheday and go out – for a coffee, a browse, a shop or just to look at a view
  • go into nature or observe nature and then capture this in a photo
  • make something creative, be it a mandala or a pattern or just so art fun.

I cannot single any one person out from family and friends….other than this person:

My husband. There for everything for me. Always. Love IS what keeps us together…and has done for over 47 years.

Sending everyone my love and gratitude.

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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It’s More Surgery For Me. 2018.40.

It’s More Surgery For Me. 2018.40.

In the overall scheme of things (OSOT as my husband says) this up and coming surgery is “just what it is”. My mouth has not healed the way it might have – nothing to do with my health. Apparently the previous stent, added during surgery in early February 2018 just was not on for long enough I was told last week by Professor Clark. I was also told, that some more skin will need to be harvested from my fabulously (my word!) giving right leg for that to happen. OK. Sigh.

My right leg is such a good one: here’s a collage of how much it has helped….and healed! I am one lucky lady.

But I still found the news harder to absorb because of the details. I knew the surgery was necessary after the Professor and my prosthodonist talked then let me know before Easter. What I did not know was that I would be having ‘the stent, the stinky stent’ in for MUCH longer than before. I had a little weep about that on the way home because I know how that felt in my mouth for the few weeks last time.

So…what’s a blogger to do? Write about it and add a photo or three.

On Tuesday 1 May, following that visit in the afternoon, I wrote this post on Instagram and I admit it was to write it out rather than let it sit inside my head and I received the love, support and care from many. I have always been buoyed by this because I am socially and physically isolated here on the coast, and having friends on-line helps greatly!

Of course my husband is the best listener and advisor. My extended family gets concerned about me too but I like to think I am confident about how things go for me.

Today I was here at Chris O’Brien Lifehouse, Camperdown in Sydney, for my pre-4th surgery consultation with my lovely Professor. This is the view down to the ground floor from Level 2 as we were waiting. We heard the piano being played beautifully later & I got to meet the lovely art-making person & make a card. It is a most welcoming and caring place to be even though why most of us are there is not for a reason we choose.

Today I learned that I will need more surgery, the addition of a stent (mouth guard) as I had in February for only weeks …will be in my mouth for months this time. This is not a pleasant thought but without it, the gums and mouth area will not stay in place for my (future)implanted teeth. . My memories of this last time was that it is uncomfortable, gets stinky & will impede eating even more. And it hurt at times. I will need more visits to Westmead in the weeks following the surgery for the prosthodontist to take the stent off & clean around it & put it back.

Additionally I learned that my lip will need more skin. My right leg will be the source of a second skin graft from the thigh. This experience last time meant a bandage on for 2 weeks, no showering and after that time, to have a bath and over time the bandage and the healing patch will come off.

To say that I am a bit disappointed is true but…… surgeries such as mine are new, they require skills and knowledge gained each time a patient is presented. So, wondering how to manage my thoughts and feeling about this, I decided that writing it helps; as does showing appreciation for all that has been done for me so far and helped me recover from the nasty news last year that I had Squamous Cell Carcinoma in my upper gums.

The day I have my 4th surgery at Chris O’Brien Lifehouse will be Wed 16 May 2018 (day surgery)

That is one day short of the first anniversary of my cancer diagnosis on Wed 17 May 2017.

Read about that here if you are new to the blog

I was on Level 2 (where I stood today)  the very next day, 18 May 2017 to meet both the Professor and Associate Professor who would be doing my major surgery in July 2017.

That it is almost one year is both scary and amazing.

Thank you friends here and on FB for your support, kindness, messages and love.

This is what I know I will be looking like again. I guess it helps me to understand more. I am disappointed but I also trust my professional team implicitly and know what they learn each time they do this kind of complex reconstructive surgery is likely to help others.

I am dealing with this positively and with courage. I am going to wear this more, I think!

I will be spending more time batch cooking as I know I have to eat as well as I can but I also know the restrictions.

Thanks for reading thus far! I know this cancer story of mine is quite dominant at the moment which I believe is linked to The One Year Since Diagnosis coming up.

Do you remember certain days/times of year for different reasons?

I sure do.

I have always been like this.

I know there have been quite a few posts about this cancer and surgery but I am grateful to be able to blog about it and hope that you can have patience with me as I continue to get towards my goal of…..implanted teeth!

Thanks to all who read and comment. I am buoyed every time as I said in that Instagram post last week.

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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