Saturday 21st October 2017

Cancer and Me Four Months On. 2017.108.

Cancer and Me Four Months On. 2017.108.

Really? It’s been four months since I found out that cancer was in my mouth….and by this Thursday coming, 11 weeks since it was removed. Oh. Then that has  gone both fast and slow!

I did say I wasn’t going to have cancer at the centre of my blogging but I cannot deny that it’s there/here/everywhere around us. My community nurse who visits each week to change and check on my leg wounds’ dressings has cancer. Hers is breast cancer. I know of on-line friends recently diagnosed too and one, very sadly, who has passed away. And the country was saddened to see the recent death to cancer of Connie Johnson from LoveYourSister.

CANCER.

I don’t use the ‘f’ word in front of it though. Many do with the #f…cancer. It’s just not me.

Today though  I am actually wanting to share the lessons having cancer has taught me. I am not going too ‘woo woo’ or having had a new experience from beyond. But it’s true.

Having cancer has taught me these 10 lessons:

  • I am not alone in getting a rare cancer and a most unusual one like mine …even if I did  know that someone else has had it might make a difference. The point I am making is I am not special”.
  • The surgeons know more about how to fix me than I do so I am better leaving things in their capable hands rather than trying to control where my cancer is taking me.
  • About kindness. Of strangers. Of friends. Of people I may only see a few times. So. Many. Kind. Words & Deeds. I am forever grateful.
  • When I need to be, I can be patient and wait. This is a huge life lesson for the previously still  impatient moi!
  • I have more inner strength and resilience than I have previously given myself credit for. It has made a psychological shift in me that has been noticed by those closest to me and the professionals I see more frequently such as my GP and psychologist. I am going well in so many ways, I can see & feel that now. 
  • To appreciate the little things in life. Sunshine on a day where I can go outside and soak up some vitamin D. A warm bed after an early shower (my husband still needs to help by sealing my right leg in a plastic bag. Time to talk. To my husband and to friends who call.
  • My creativity and independence give me great strength each day as I endeavour to feed myself for healing, wellness and enjoyment. It IS a challenge but now I am on my own two feet and fit to cook, I enjoy making meals for someone (moi!)  who has 8 teeth on the bottom jaw and a strong tongue. The rest…is attitude and being aware of how I can eat safely.
  • I can be calm about what is ahead because I am fortunate enough to be able to know (within a small likelihood) that my cancer is unlikely to metastasise.
  • What I face in the next 6-12 months is to get my mouth ‘fixed’ from the inside. I do trust my surgical and dental team 100% that their goal is for me to be cancer free (check!) and back to eating as I might have in the past (on the way) and to have my full smile back (it is half at the moment).
  • Every day is a gift and I need to be more in the present than I have ever been in my whole life. I am a work-in-progress in this as I often spent times in the past (regrets, sadness) and projecting into the future. I know that the only moment we have is NOW. 

What About You?

None of us have to have cancer to consider making life changes. Some of the last 2 years I had been on my way using daily meditation, creative arts and reading & doing on-line courses to better understand the various life transitions that were mine. Retirement. Ageing. Leaving Family. Selling Our House.

What do you do to help yourself?

Thank you to my readers here who have continued to be wonderful supporters and friends of mine as I continue to journey. I am buoyed by your care and words on-line whenever we connect!

Denyse.

Joining with Kylie Purtell (who is cruising along right now!) for I Blog on Tuesdays here and with Leanne here for Lovin’ Life Linky on Thursdays.

 

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Mindfulness. #LifeThisWeek 33/52. 2017.101.

Mindfulness. #LifeThisWeek 33/52. 2017.101.

This prompt, along with my daily meditation via Headspace, was developed for ME to become even more mindful than I am.

I thought that it might help me become more focussed as I know I need to be more present-based in my thoughts rather than past oriented or future centred. 

Having the knowledge of what mindfulness is I need to be more practised in it.

Here’s a few knowledgable people’s quotes about what mindfulness is:

  • “Mindfulness means paying attention in a particular way; on purpose,
 in the present moment, and 
non-judgmentally.” (Jon Kabat-Zinn)
  • “Bringing one’s complete attention to the present experience on a moment-to-moment basis.” (Marlatt & Kristeller)
  • “Awareness of present experience with acceptance.” (Germer, Segal, Fulton)
  • “Mindfulness is a state of being in the present moment openly, flexibility and with curiosity” – (B.J. Whelan)

So, why be mindful?

The present moment, as it is said by Erkhardt Tolle, is actually the NOW and it is the only time we experience. The past has happened and the future is yet to happen.

So, what am I doing to be more mindful?

  • When I am driving I ensure I pay attention to the road…and the conditions of course, but I also sense the wheel in my hands, listen to the music I am playing and sense the fresh air coming through the vents
  • When I am making something creative, I have my materials to keep me centred as I decided what colours, media and designs to make
  • When I am sitting without distraction, in my chair, or looking at a view, I take it all in through the five senses if that is possible
  • I recognise that if I become too past oriented or future centred, I do not notice or take in the present moment and I may indeed miss something of value such as a bird singing outside or the sun moving behind the clouds
  • It also helps me when I am anxious or worried to take some strategies I have learned about being present: see 5 things and name them to myself, hear 4 things and name them, touch 3 things and name them, smell 2 things and name them and finally, if appropriate taste one thing and name it. Once  I have mindfully done this I will often find the anxiety/worry has moved on!

I found this here and it is a great list for the ‘why’ of being mindful.

The Benefits of Mindfulness
Practising mindfulness helps you:
* to be fully present, here and now
* to experience unpleasant thoughts and feelings safely
* to become aware of what you’re avoiding
* to become more connected to yourself, to others and to the world around you
* to become less judgmental
* to increase self-awareness
* to become less disturbed by and less reactive to unpleasant experiences
* to learn the distinction between you and your thoughts
* to have more direct contact with the world, rather than living through your thoughts
* to learn that everything changes; that thoughts and feelings come and go like the weather
* to have more balance, less emotional volatility
* to experience more calm and peacefulness
* to develop self-acceptance and self-compassion

How are you at being mindful?

Do you sometimes find yourself wondering what just happened as you have not been paying attention to whatever you have been doing?

Can you suggest some strategies you use for being more mindful?

Denyse.

Linking with friends Alicia here and Kell here who also blog on Mondays!

Thank you for joining in the link-up this week.


 

 

 

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Reality Bites. Part One. 2017.96.

Reality Bites.Part One. 2017.96.

Today, 6 August 2017, as I write, it is exactly ONE month since my cancer surgery on 6 July 2017.

I am calling this post ‘Reality Bites’ as the consequences of the diagnosis of cancer, the pre-op visits and treatments and then the ultimate ‘reality’…. the complex and major surgery in my mouth and on my right leg have truly ‘bitten’.

I am writing it out so I can honestly tell you, my readers, that I am NOT doing so well in that emotional sphere at the moment.

This is despite my previous posts where I appeared to be going so well. I was/am in a physical sense.

Readers who want to read more about what this surgery was about can go here:

my diagnosis….my updatesmy grateful post #1my grateful post #2.

Reality has bitten in the form of a heightened emotional response (and IBS frequency) to what has happened to me…my feelings are catching up with what I have been through – from date of diagnosis 17.5.17 till now. (less than 3 months!)

Here is how it is for me NOW as I recall memories that are not great and are affecting me somewhat even though I know things will get better over time.

  • Wow, it’s been one month since the huge operation which I  knew was going to (hopefully) take all of the cancer out of my mouth and leave me with a reconstructed mouth using tissue and bone from my right leg.
  • I recall my feelings of being totally overwhelmed when the surgeons began to describe how they would ‘fix’ this cancer in my mouth only one day after I found out I HAVE cancer.
  • I got through the drive home after that with my hub on my least favourite road (M1) as I tried to wrestle the past 24-48 hours into some sort of sense for me. It was surreal.
  • At home I ‘tried’ to go on with ‘normal life’ but that is impossible when the word C A N C E R shone like a red light in my mind constantly.

“last smiles” were/are treasured but under those false teeth it’s cancer

  • I made  plans and prepared for hospital,  making meals for later,  and making sure I had sufficient clothes and activities ready to take to the hospital but it was surreal. I was doing this BECAUSE I have cancer. It still did not make sense to me.
  • I know that I saw my GP and psychologist about the surgery and what is meant to have cancer and yes, I cried sometimes but other times I was just numb. THIS could not be happening to me!?
  • My mouth and its discomfort and smell were the source of the cancer and I began to ‘hate’ it.
  • I also knew this surgery was going to take away 3 things that were and are precious to me: smiling, communicating and eating. Made me sad and quite stressed.
  • I was resigned to what the operation was but I truly had no idea of how it would impact me because it was like I was somewhat detached.
  • I knew that the surgery would be within 4-6 weeks of our consultation with the surgeons but oh how those weeks dragged on as I wanted to surgery to be over…but I also did not want to have it. So horrible. It  ended up being 7 weeks after diagnosis.
  • It took me weeks to finally get out the hospital forms and complete them. I just couldn’t before. I had to make myself do them. Filling them out meant, of course, I HAVE cancer and HAVE to do something about it. 
  • I made a decision to stay in a ‘cheap place’ the night before surgery and I so regret this as we were uncomfortable and I spent some of the time ‘feeling guilty and responsible’ because I have cancer. 
  • On the day of surgery, at 6.00 a.m. we  presented yourselves at Chris O’Brien Lifehouse, and then once ‘checked in’  I undressed and got into the paper gown which meant THIS is about to happen. O.M.G. 
  • I said goodbye to my husband and was off….the journey into the unknown…the operating theatre.

I’ve written two posts (see above) which described how things went for me in hospital so I will not outline any more here today.

The next post will outline what happened emotionally in hospital and then my homecoming. I have chosen to write about it all from an emotional perspective as life as a cancer patient post-surgery is affecting me and writing it out is to help me.

At home in my first weeks.

Have you had cancer?

Do you have an experience of having a life-changing event for you where things caught up with you later on?

I appreciate your comments and support. I am not looking to ‘get advice’ as I think that in recognising what is happening to me and letting it happen is probably the healthiest way I know how.

Thank you for your support!

Denyse.

Joining with Kylie and friends here for I Blog On Tuesdays and here with Leanne and friends on Thursday for Lovin’ Life linky.

 

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I Am Grateful Today. Part Two. 2017.94.

I Am Grateful Today. Part Two. 2017.94.

Two weeks ago I wrote “I Am Grateful Today. Part One. Here is the link as it is the ‘back story’ to this post.

Where did those two weeks go? I did say I would write Part Two last week for I Blog on Tuesdays and Loving’ Linky on Thursday but a hiccup called anti-biotic reaction in my gut  s l o w e d  me down!  Add to that a  ‘foggy post-anaesthetic’ brain and needing to rest more, time got away!

Here I go, outlining some of the features I was grateful for during my stay on Level 9 North Room 16 at Chris O’Brien Lifehouse. I arrived on the ward late Sunday afternoon from ICU and the delight at seeing the V.I.E.W. from my bed made the wait worth it!

I was in my private  room from Sunday 9 July until Saturday 15 July – day of discharge.

Warning: I have added a few photos of myself as I was recovering. In some ways this was very helpful for me to see progress. Scroll on by if you would prefer not to look. 

The arrival in a room of my own brought me some independence even though I still needed some initial assistance to get up for the ‘loo. I was grateful, oh so grateful for my relative independence.

I was still on nil by mouth – liquid food via a naso-gastric tube  ( I tolerated it and guess I was grateful because the nutrition, along with the drip feed of fluid was keeping me alive (LOL) …just disliked the feeling on the fluid  tube feed inside me. 

I stayed in a hospital gown because..I was messy…no details but a fair bit of me in the head/neck area was cut into and then stitched back so there were… messy fluids. I was grateful for a warm quick wash in bed and a change of gown daily. It also meant my nice Sussan nighties stayed in the bag until later in the week.

I have mentioned elsewhere that I had some amazing nurses caring for me and I struck up conversations with them all. Often my chats were to ask them about their career choice and how they liked their working lives, and with only one exception all agreed (from young ones to older ones) that this is a vocation for them. I am incredibly grateful to those who choose nursing and who remain dedicated to it as I saw first-hand how rushed off their feet they could be. I often said to them “I hope you have had a meal and a bit of a break today/tonight”.

The night nurse I had 4 nights in a row who clicked with me was Roan and I know I featured him in a post recently  about how we shared a passion for  photography. He was the one who invited me to get up and onto the balcony for sunrise pics. I am so grateful for his genuine care.

As the week progressed I was grateful to see some of the surgeons’ team arrive each day to check on me (and the flap inside my mouth to see it was still ‘lub dubbing’. I was ALWAYS grateful to hear that sound from the doppler! 

I had excellent care from three allied professionals and I am oh so grateful for their advice and help.: the physio who got me into my boot and walking with some trepidation but I eventually could walk unaided. The speech therapist whose job it was on Day 6 post surgery to see if I could speak well (derrr. who was ever going to stop me!) and to drink my first glass of water…as sips! It was GOOD. So grateful for that drink for sure. The dietitian had lots of advice and seemed well-versed in IBS issues and I was grateful for my first day of clear fluids on the 7th day post surgery. But I never wanted to try the soup again after the third time! I tolerated the jelly and the apple juice well. On the last day in hospital I was on smooth soft foods but there was little for me to choose from (that I liked!) but I was grateful to have some mashed potato and some baked tomato – which I had to smash up for it to ‘go down.

Each day brought me something to be grateful for. I was told by every medical professional just how amazingly well I was progressing. I had no measure for this but they obviously did and when I asked the Professor quite cheekily did he think I could go home on the weekend (I hoped Saturday) he said words to the effect ” keeping on going the way you are and I see no reason why not”. How grateful I was that I would be discharged in the minimum time (I was told initially 10-14 days and I went home on day 10!) And check me out with NO more tubes down the nose or up the nose..oh so grateful for that day! 

The person I am also incredibly grateful to is the anaesthetist who put drips and cannulas in 3 different places ( he said to ensure that if one stopped working in the marathon 11 hour surgery, he has a spare to use!). I might bruise easily, and now 3 weeks post-surgery my bruises have gone. They did not hurt me much. I was grateful for relatively little pain in the mouth and just a bit from the leg’s various sites where flesh and bone were harvested. From day two I only ever needed panadol – drip version first, then  liquid version as swallowing too challenging with the swelling inside my mouth.

There are many quiet and lonely times in hospital once evening comes and I was so grateful for my iphone for messages, texts and emails (as well as IG, twitter and FB) and my new Ipad for games, music and more. I also took my art things but the one I did enjoy the most was making mandalas each evening. The meditative effect for me was so for helpful in mitigating missing my husband and home.

I was grateful for the kindness of friends who understood my request for no visitors other than my husband and my daughter. Our son could not make it in. I had many, many well-wishes and some surprises dropped into my room for me. I did feel grateful for this. It is a distraction and a way in which to reinforce how we need to connect with our fellow humans!

 

On Saturday 15 July, after the minor (which led to some not great complications for my gut later at home) infection  was noted in an area of my leg & treated,  my husband arrived…I was already dressed (keen much?) then he had to pack up the bag and more. It was done with ease and I was grateful to leave my room of shelter, health recovery and protection  to be put in a wheelchair and taken to our car.

I am grateful if you have read to the end. It was interesting trying to recall events chronologically and without the photos to help me I would have struggled. This weekend ( as I write) I am feeling less and less foggy-brained and the gut is settling from the nasty antibiotics.

Have you ever had major surgery?

How was your recovery?

What were you grateful for?

Denyse.

3 weeks post-surgery. On our way home from post-op check up.

 

Joining Kylie Purtell for I Blog on Tuesdays here and Leanne at Deep Fried Fruit for Loving’ Life here on Thursday.

 

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What’s in a word? Cancer. 2017.82.

What’s in a word? Cancer. 2017.82.

Since I heard the word, cancer, to describe what had been found via pathology from the biopsied tissue from my gums, I have seen it and heard it everywhere. However, I think, it’s like when I  first become pregnant, I saw other pregnant women everywhere.

It’s more noticeable because it affects ME. So, whilst there is still no word (ha!) on the exact  date for my cancer surgery, I thought it timely to write a post.

I have been incredibly well-supported already by those in my friendship realm here in the blogging world and elsewhere.

Each has been from someone who has had cancer, knows someone with cancer, and is currently being treated for cancer.

I read recently  that 1 in 2 of us will have cancer. Wow!

My family of course have expressed their concern and care for me. I have been visited by almost all of the immediate family and that has been lovely. What I have found too is the outstretching of hands (figuratively) of so many is helpful and reassuring which is why I blog about it.

Here’s what I wanted to share briefly:

I had been on a roller-coaster of emotions ANYWAY before I was diagnosed with cancer, so to add cancer to the mix has raised those anxious thoughts of mine to greater levels. But, I am thankful that I was already doing much to help myself with anxiety and adjusting to our new way of life. Meditation, being more mindful, walking, being outdoors, blogging, enjoying some Netflix with my husband, going to the beach, taking photos, supportive health professionals  and generally engaging on social media are already integrated into my life. So, they have become tools for managing my thoughts about cancer too. 

Thank you to the many people who have sent me messages, cards and let me know that I am in their prayers, thoughts and hearts.

“We are all just walking each other home” Ram Dass.

It is very humbling to have such a lovely group of you with me.

Most of all, I thank my husband who is already my finest supporter and rock! He will be with me as much as he can within the first days in hospital and I know, not matter what state of grogginess I may be in, he will be within arms reach for me. That IS love. I am so lucky.

Thank you everyone. I hope that if the word ‘cancer’ is part of your world by association or for you that you too will be cared for and about like I have been. I am blessed. This image is one I am using when I need to take myself to a more enjoyable mindful place. Enjoy!

I am grateful every day.

UPDATED: About my present state of health. 

When I wrote this post I thought I was managing myself quite well. Since then, I have had some pretty horrid days (and nights) where I have become fearful, panicked, and so vulnerable I wanted to go into a corner and hide and never come out.

I am shit-scared right now.

I am worried about losing what I valued: my mouth where I speak, eat, share my emotions and smile. It has been days of crying uncontrollably, being held until I calm down (thank you dear B) and taking some valium (which I don’t really want to) and letting out the fears  in words between the sobs. 

I fear: the loss of ability to use my mouth for at least 7-10 days, have a naso-gastric feeding tube down my throat for those days, having the skin/flesh/bone from my right leg inside my mouth after 3/4 of my upper jaw/palate as been removed. Dealing with the not being in control.

I am, as I write, unable to really express what it means to be facing this loss of control of my body. I will be in ICU to start and may even have a tracheostomy to start if the mouth is too swollen. This is very scary to me, and I am admitting it now.

For me to admit how vulnerable I feel right now is to say “I cannot do this without help”. My husband reassures me he will be there as much as possible, and given how I will look and be, he will be my only visitor until I give any indication I can see others. I am facing the unknown and that as we know is the scariest place to be. I will be losing my smile….for more than a while. Possible 3-4 months until my upper jaw recovers.

Have you faced major surgery of any kind for cancer and other reasons?

How did you deal with it?

I am so wanting some answers that help me know – in the pre-surgery phase that I am not alone in my fears. 

Thank you for reading this far! I appreciate that very much.

Denyse.

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

Linking here on Thursday with Leanne and friends for Lovin’ Life.

 

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For Courage. 2017.80.

For Courage. 2017.80.

I’ve been taking my time since I retired from work to seek answers to life’s twists and turns. I’ve attended church and Sunday School as a child and an adult. I am not sure if or what I believe in these days. But I know I need  to connect with my deeper inside me and I am pretty sure that I also need to connect with others. That is what human beings need. Love and belonging and connection.

Interestingly I have found myself less resilient and even more surprising to me less confident in the past 3 years. I believe it may be connected to the ageing process but it still does not sit too well withe me, so I search for answers and ideas from others. I love the words and lessons from Pema Chodron. Another source is the works of John O’Donoue and in his book  To Bless The Space Between Us  I found this.

 

For Courage.

When the light around you lessen and your thoughts darken until

Your body feels fear turn as cold as a stone inside,

When you find yourself bereft of any belief in yourself

And all you knowingly leaned on has fallen,

When one voice commands your whole heart

And it is raven dark,

Steady yourself and see that it is your now thinking

That darkens your world,

Search and you will find a diamond-thought of light,

Know that you are not alone and that this darkness has purpose;

Gradually it will school your eyes

To find the one gift your life requires hidden within this night-corner.

Invoke the learning of every suffering you have suffered.

Close your eyes.

Gather all the kindling about your heart to create one spark.

That is all you need.

To nourish the flame that will cleanse the dark of its weight of festered fear.

A new confidence will come alive to urge you toward higher ground

Where your imagination will learn to engage difficulty

As its most rewarding threshold!

p. 107. States of the Heart section.

What kind of attributes help us be more courageous?

I’d love to hear from you about how you deal with fear.

Denyse.

Joining with Kylie Purtell here and the bloggers who blog on Tuesdays!

On Thursdays I join then Lovin’ Life Linky here with Leanne and friends.

 

 

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My Cancer Journey Begins. 2017.75.

My Cancer Journey Begins. 2017.75.

A while back I decided that to best describe the life stage we were at was to use the word ‘journey.’ For some people and their reasons, journey is not liked. I happen to like it and will be using it for what is now being added to this life stage!

Thank you to the many people who commented here last week and on Facebook when I made my news public. Sharing has helped me!

Whilst I do not intend to blog every week about the cancer that is here within…I will for now as it helps me!

The cancer journey continued with a trip to Westmead Oral Health on Wednesday 24 May for a consultation, examination and measurement session with the Dental specialist who will be part of the surgical team when I get my cancer cut out. I admit I was stressed. I still am. It is such an unknown and my mind needs to be more calmed. However, as my GP said when I saw him after this big session on the Friday “Denyse, you are doing very well indeed!”. Today we are back to Westmead for a follow-up with the Dental Specialist and scans on my neck and head to ascertain all is well for the major surgery and on my leg where the bone and skin will be taken for the reconstruction and skin graft.

Sigh.

Still mentally criticising myself for the meltdowns, the tears in front of the professionals and more….yet it is a situation of such immense emotions and I was already struggling somewhat. I am still going about my days at home with as much normality as possible.

In the meantime, I am making art, taking photos, blogging, chatting on-line, reading, walking, tending the garden and talking to my lovely husband and being mindful to eat as well as I can even with my sensitive gut.

On Thursday I made a trip to Budgewoi to take some photos and these help remind me of the journey and that it is, like everything in life, one step at a time.

I am not sure as I am writing this when  I will be making the journey across this bridge again on the way to Chris O’Brien’s Lifehouse. I shall update.

Thank you for reading thus far! I am encouraged along the way via the comments and support.

Denyse.

Joining Kylie Purtell, celebrating her blog’s 8th Birthday, here and with my friends who also Blog on Tuesdays.

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I Have Cancer. 2017.72.

I Have Cancer. 2017.72.

Some news I need to share and it’s not great. I have cancer. I remember people telling me I had a nice smile.

It’s bye-bye smile for a while

My dentist has been treating me for some small overgrowth of the front top  teeth since January 2017.  It has grown. More than ever.

Over time it was my choice to eradicate the gum overgrowth by having  my front 6 teeth and  bridge removed, replaced by a temporary denture,  in the hope was the gums which were irritated would settle. Some 5 weeks later they had not. When I saw him on Thursday 11 May, we agreed I needed a biopsy of the gums. Fortunately the oral surgeon, next door, could fit me in the next day. I also had CT scans and x-rays of my mouth as my GP was getting concerned. The CT scans and X-rays were fine.

On Friday 12th May I had a biopsy and  the good news from the pathology on the following Monday 15th May was unfortunately premature as on Wednesday  17th May I was called by the oral surgeon to say that the top gums where the overgrowth lies are cancerous with squamous cancer cells.

To say it was a shock was an understatement and I am still a little bit that way. I was alone at home but after a quick phone call to my husband counselling at Lifeline meant  he was home within the hour.

The oral surgeon was fantastic because she rushed a referral to the Lifehouse in Sydney, where the specialist head and neck clinic is, and that afternoon the practice manager rang to say I could see Associate Professor  Aradalan Ebrahimi at 3 p.m. in Sydney Thursday 18th May at the Chris O’Brien Lifehouse in Camperdown Sydney. My original referral was for Professor  Jonathan Clarke but as the two doctors work together I was fine with that.

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It might sound weird but I have had huge issues with worrying about travelling distances in the car on the M1  because of IBS. I was stressed anyway, let alone having IBS come along at any time. But, with some kind words from our local and new GP about ‘take the valium, take the immodium, you will be ok’ I was. My lovely husband drove and stopped at any toilet where we could find one. I was one nervous lady. We got to Sydney (haven’t been for over 2 years!) within 2 hours, found a park under the Lifehouse…and waited only 10 minutes. We left home at 12.30 pm and were back by 7.30 pm. That day the Motorway played nice. Thanks M1. Back to the story. 

A/Prof Ebrahimi was incredibly kind and professional and we are all on first name terms. Mind you he is around our daughter’s age. I had a full exam of the mouth, a light on a cable went down through the nose to my throat and I had a  physical examination of the neck and lymph glands. It is hoped that the cancer is all in the one place. The top gums at the front and there is some spread inside my top lip. Sigh.

As he started to explain what would be involved in the 10-12 hours surgery,  in my mouth where they will take the tissue out and  surrounding areas. I became more and more overwhelmed. There was this too: they will be replacing the inner part of my palate, my jaw at the top and gums with skin/muscle tissue and bone from my left leg. The bone will have implants put in for future teeth to be added. As  I was told that I had quite a melt down at the thought of the hours ‘under the anaesthetic’ most of all…and that is meant this was a BIG operation.

The associate Professor kindly gave me a few minutes to go for a little walk with my husband and check out the view from the building’s windows overlooking Sydney Uni, then I was calmed with the help of a half valium before moving on to the details of the surgery itself. By this stage, his ‘boss’, Professor Jonathan Clarke came in and together they came up with more details of the plan for the operation.

Mouth (oral cavity) My Cancer area. 

The mouth includes the lips, gums and tongue. The tongue is the largest organ in the mouth and is made of muscular tissue.
The roof of the mouth is formed by the hard palate. Behind the hard palate is the soft palate, which is an arch of muscle behind the hard palate, going into the throat. The soft palate lifts to close off the passageways to the nose so food does not go through the nose on swallowing.  Source:Lifehouse.

 

Prof Jonathan Clarke. http://www.mylifehouse.org.au/wp-content/uploads/2016/04/Jonathan-Clark-e1461566255963.png

However, the thoughts are as of now – before I have further CT scans to rule out anything unseen by my previous clear CT of my sinuses – that there is no spread but that recovery from this will mean 10-14 days in hospital. I will have ‘two’ areas in my body to recover from: my left leg and my mouth. I may be in intensive care for a while too.

About the Head and Neck Service

The Head and Neck Service at Chris O’Brien Lifehouse brings together over 40 highly skilled medical and allied health professionals including surgeons, radiation and medical oncologists, dental specialists, speech therapists, specialist nurses and dieticians, along with research scientists and data managers.
The Service has a national and international reputation for excellence. More than 450 new patients (200 with cancer) are seen annually and the computerised database of the department is the largest in Australasia.
The Sydney Head and Neck Cancer Institute (SHNCI), founded in 2002 by the late Professor Christopher O’Brien AO to provide comprehensive, state-of-the-art treatment to patients with cancers and diseases of the head and neck, is also an important part of the Head and Neck Service providing funding for two head and neck clinical fellows each year. Source: Lifehouse

After telling our close family, I reached out to share my news with some lovely on-line and IRL friends. Their support was amazing. Now I am making it public here, on Facebook and Twitter because I need the love and support to surround me as I go into something I had not predicted. Ever. Yet, so many of us affected by cancer. I have not once thought ‘why me?’ more like ‘why not me?’

I have the best people in the profession looking after me at the Lifehouse in the Head and Neck Clinic started by the wonderful, but late, Professor Dr Chris O’Brien. He became one of the ‘stars’ of the TV  show RPA (Royal Prince Alfred Hospital).  The Lifehouse built in his name is part of RPA and accepts both public and private patients. I am being treated as a private patient. Professor Clarke  was trained by Chris O’Brien in this speciality of Head and  Neck Surgery. Chris O Brien’s vision was that he always wanted cancer patients to be in one place and this is it.

Professor Dr Chris O’Brien. http://www.bing.com/images/search?view=detailV2&ccid=zJK%2btLzW&id=BC8CED97E14A6AD24D66DE0C67BD5E7B467E25AB&thid=OIP.zJK-tLzW3gePAyHJjObiDAEnEs&q=lifehouse+chris+o%27brien&simid=608053618380309990&selectedIndex=21&ajaxhist=0

 

My operation will be there, I stay there and have my tests and any follow-treatment there too. Mind you  we don’t live in Sydney anymore and  it’s 2 hours from here but that is the price we pay for living in regional NSW.

Tomorrow we will travel to Westmead (Sydney) Dental Clinic where the specialist in oral reconstruction will examine my mouth for the first time to come up with a ‘template’ for reconstruction. I will have a further visit to him for a final measurement, and a big series of CT scans prior to the team involved in my surgery coming together and then sending the details overseas where a software program will plan my surgery. Apparently there will be two teams working in conjunction  with me. No, we haven’t asked for a quote (yet) but we do have top private health insurance and we have asked for a discount where possible as we are on a relatively low income as part-pensioners.

All good vibes, thoughts, prayers and wishes are accepted with appreciation!

Thank you.

Denyse.

Joining with my friends who blog on Tuesday here with Kylie Purtell.

Already lots of  love comes from here…the Lovin’ Life linky with Leanne and friends.

 

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