Wednesday 28th June 2017

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.

http://ad009cdnb.archdaily.net/wp-content/uploads/2014/10/54406d61c07a801fe7000441_chris-o-brien-lifehouse-hdr-rice-daubney_image1_brettboardman-530×353.jpg

 

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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Tears For Healing. 2017.51.

Tears For Healing. 2017.51.

Like many I have thought tears shed were a sign of not dealing with what is or what was.

I was wrong.

I have been shedding tears more than ever in the past few months, and over the past 2+ years, and whilst I knew in someway they were helping I continued to see them as a sign of weakness.

I take that back.

When I saw these words from Washington Irving I realised I have been healing myself and will continue to do so.

Sharing them here:

There is a sacredness in tears. They are not a mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are the messengers of overwhelming grief, of deep contrition and of unspeakable love.

Washington Irving

 

The grief of losses of lifestyle & what I’ve left behind since 2014 is there but also I have hope that my tears are helping me accept the changes I am noticing as I am ageing. ❤

Do you shed a few tears, have a good weep and allow yourself to heal and accept what is?

Denyse.

Joining the lovely Sammie and her friends here for The Ultimate Rabbit Hole on the weekend where bloggers link favourite posts and share the bloggy love.

 

 

 

 

 

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Week 12 Intention. Practise Self-Compassion. 2017.44.

Week 12 Intention. Practise Self-Compassion. 2017.44.

After living a life with many distractions, busy-ness to the max and more, I have found the quiet times in retirement are quite a challenge. Why? Because there are more stretches of time and space in which to think.

For me, it’s interesting to notice how I continue to strive and how I continue to want others to see me doing well in my quest for greater equanimity in my life overall and better management of my IBS.

Who is out of this real or imagined group who support me? Often it’s me.

I remain steadfast in my older, learned early, self-critical views and I am S L O W L Y learning to remember my self-compassion when I am not doing so well. It is not every day because I am making progress!

I am pleased to note, that when I started a Self-Compassion Course on-line with Kristen Neff and Brene Brown my overall score was: 1.93 and when I completed the course it was: 3.11

“Average overall self-compassion scores tend to be around 3.0 on the 1-5 scale, so you can interpret your overall score accordingly. As a rough guide, a score of 1-2.5 for your overall self-compassion score indicates you are low in self-compassion, 2.5-3.5 indicates you are moderate, and 3.5-5.0 means you are high.”

So, what I take from that ‘score’ is I am improving in my self-compassion and I am remembering to speak more kindly to myself in difficult circumstances.

My Week 12 Intention.

This week I am going to practise self-compassion more. In fact, I will even make it something I do throughout the day in the smallest way. It might be a ‘go me’ under my breath or a literal ‘pat of kindness’ on my arm when I need soothing.

If you want to take the self-compassion Test, it is here: It is free and I find the work of Kristen Neff and fellow researchers fascinating. Self-esteem it is not!

I wish you well if you decide to take the test. It is very insightful.

Denyse.

UPDATE: I have chosen to reduce my blogging output as of this week so as to be more mindful of my self-care and self-kindness. I am not making any further intentions at this point. My life has been on a learning curve as part of ageing and transition to living with both a chronic condition (IBS and its accompanying limitations)  and the stress which is part of my inner being. I am wanting to feel less inward pressure on myself and needing to care for myself more. Blogging has been a part of my life for more than 6 years and will continue to be but I am blogging now for when and if I choose to. I know that regular  readers will completely understand my new(er) direction as of today! Thank you!

A reminder is in this image: 

 

Joining with Leanne and her lovely team for the  Lovin Linky on Thursdays here.

 

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Week 11 Intention. Recognise ‘It’s In Me’. 2017.40.

Week 11 Intention. Recognise It’s In Me’. 2017.40.

Every time I turn around to look for an answer to what life is dishing up to me now I see that it’s up to me how I address it and how I react/respond.

Until recently I thought that meant “ME” alone. However, with good advice and a cooler head helping me, I realise it means that I can see and seek how to act and solve issues for with tools at my disposal.

These might be professionals. taking my own advice and getting outside, reading an article, doing an on-line course and the like.

I just need to remember to find them and ask for the help from others where it’s useful.

But what I know is that it is all within me.

The poem from Mary Oliver captures the essence of what it is for me. Thanks for my husband (my wonderful confidante, friend and life guide) for this.

Last week, and continuing on, the Gratitude Journal app is having entries almost daily. That’s a win!

My Week 11 Intention.

To recognise that all I need is in me. I need to take into account the ‘in-built guide of my mind’ and the tools I have external to me that can also help me as need be.

I wish you a wonderful week ahead too. It will likely have bumps and scrapes but will have YOU to guide you too.

Denyse.

 

Linking here with Leanne on Thursdays for Lovin Life. Hello everyone!

 

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Week 10 Intention: Gratitude. 2017.36.

Week 10 Intention: Gratitude. 2017.36.

I’ve blogged before about writing in my gratitude journal on a  regular basis. Then, as if by ‘magic’ the habit gets waylaid. I know that when I made entries in it I could focus on the big and small things that I am grateful for.

I have an app and it gives me a reminder. I am back! It’s a paid app called Gratitude Journal – The Life-changing App. I like it because I can add photos as well as text. There are many others out there too

However, I also practise gratitude more these days without always recording it.

Gratitude has taken some criticism of late in some circles, as does the notion of whether meditation helps us if we cannot shut out our thoughts – by the way, you can’t and that’s OK too!…So I go along with what works for ME!

Here’s some information gleaned about gratitude from a great website worth subscribing to..it’s free. Source:

The Greater Good. 

Physical
• Stronger immune systems

• Less bothered by aches and pains

• Lower blood pressure

• Exercise more and take better care of their health

• Sleep longer and feel more refreshed upon waking

Psychological

• Higher levels of positive emotions

• More alert, alive, and awake

• More joy and pleasure

• More optimism and happiness

Social

• More helpful, generous, and compassionate

• More forgiving

• More outgoing

• Feel less lonely and isolated.

The social benefits are especially significant here because, after all, gratitude is a social emotion. I see it as a relationship-strengthening emotion because it requires us to see how we’ve been supported and affirmed by other people.

Indeed, this cuts to very heart of my definition of gratitude, which has two components. First, it’s an affirmation of goodness. We affirm that there are good thing in the world, gifts and benefits we’ve received. This doesn’t mean that life is perfect; it doesn’t ignore complaints, burdens, and hassles. But when we look at life as a whole, gratitude encourages us to identify some amount of goodness in our life.

The second part of gratitude is figuring out where that goodness comes from. We recognize the sources of this goodness as being outside of ourselves. It didn’t stem from anything we necessarily did ourselves in which we might take pride. We can appreciate positive traits in ourselves, but I think true gratitude involves a humble dependence on others: We acknowledge that other people—or even higher powers, if you’re of a spiritual mindset—gave us many gifts, big and small, to help us achieve the goodness in our lives.

Thank you to my lovely commenters relating to my ‘go gently’ intention. It “was” a tough week (I am getting somewhat familiar with those!) but I did treat myself more gently and now am ready to accept that some weeks/months/years ARE indeed tough as that is LIFE.

My Week 10 Intention.

To practise gratitude each day, and continue onwards after this week, by noting what I am grateful for and by recording a summary each evening in the journal.

What do you do to practise gratitude?

Denyse.

Joining the lovely Leanne’s linky called Lovin’ Life on Thursdays.

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