Sunday 24th March 2019

Not A Smooth Recovery Path For Me: Head & Neck Cancer. 2018.133.

Not A Smooth Recovery Path For Me: Head & Neck Cancer. 2018.133.

Update One: Monday 24 December, is that whilst it is always disappointing to have changes like this in recovery, I am actually able to manage the issue of pain, when it arises and am feeling better in general.

Update Two: Monday 14 January, the pain comes and goes but the news from my Head & Neck surgeon is that he was looking for cancer when I saw him on 8 January. This made me quite concerned. Whilst there was not cancer there as he could see, I do now know there could be another surgery this year. Sigh.

It’s Friday 21 December 2018 and not a normal blogging day for me at all.

But, head and neck cancer recovery is not ‘normal’ I guess!

My blog has been a great source of comfort to me as I can write down what is happening to me, and often receive support in return.

That is lovely.

Today I just need to share this story.

Since my last blog post here, I have continued to be back and forth to the great team I have at Westmead: my prosthodontist and nurse. Each visit since October – when I last saw my Head and Neck cancer surgeon and nurse – has been about:

  • checking the health of the skin which was added to my upper lip (under it) last May
  • checking I am keeping the metal abutments clean where they are attached to the upper teeth prosthesis
  • and fitting me for a partial lower denture to add to my remaining 8 teeth

Showing my mouth’s flexibility – reduced now.

I have had some pain. It is like a sharp nerve pain and each time I mentioned it I was told it is part of ‘re-modelling’ and I have taken that to mean, this will go on as my new mouth and lip settle into their space. I am pretty good at managing pain but earlier this week I needed to share what had been noted by me after seeing my G.P.

  • the pain, which initially we/I thought was from some abrasion of the new tender inner side of the lip against the prosthesis was not likely to have been only from there…because
  • when I tried to use my small micro brush to clean in between the gaps left at the top of the screwed in prosthesis there was  no gap 
  • where the gap had been was skin, resting and immoveable, onto the top of the acrylic prosthesis

After my G.P. saw it, I sent these photos to my Professor and the Prosthodontist. The prosthodontist rang to say, stop using the microbrushes and use the water pik only to clean. The professor emailed to say “come and see me early January for a closer look”.

Yay to having responsive professionals. Very grateful.

Not so happy for the pain it is causing, the lip tightening even more and the disappointment that things are not going as I had hoped. Probably as my team had hoped too!

On the positive side, I have overcome setbacks before AND I trust my professional team BUT this is not a situation I imagined.

Skin does its thing it seems. My post here is about how the stent being taken out too soon prevented the full healing and I needed a 4th surgery and then over 3 months with a new stent.

I seem to think….more surgery may be on the cards.

Sigh.

I am taking pain medication as advised by my G.P. I am doing all I can to treat myself more gently. I am looking forward to seeing the family on Christmas Day here but my eating may be even more compromised by then. Who knows?

Many I know in the Head and Neck cancer support groups are in quite different stages of healing, acceptance of many aspects of their recovery and managing things well. I am buoyed by them, and already support for me and my update has helped. I also know as an Ambassador for Beyond Five, that those of us with Head and Neck cancers are affected by treatments long after the five years.

I am just over 19 months since diagnosis. I am also less patient than some! I am, always very grateful for my cancer treatments and follow-ups in an Australian setting here:

Chris O’Brien Lifehouse

The late Prof Chris O’Brien. In the hospital named after him.

Westmead Oral Restorative Sciences

Thank you for your support, friends from blogging land and readers!

Denyse.

 

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Head & Neck Cancer: “Beyond Five” Ambassadorship.2018.130.

Head & Neck Cancer:”Beyond Five” Ambassadorship.2018.130.

Last week I wrote a post called Farewell and Hello. It was pretty long so I stopped at Farewell promising to be back for Hello. Here we go!

Regular followers here know that I was diagnosed with head and neck cancer (squamous cell carcinoma) in my upper gums and under the top lip. The whole story is here, in posts, from the day I was told until the recent post on adjusting my eating requirements when I am out of the house.

Hello, I am now a Beyond Five Ambassador!

How this came about was partly after this day in October 2018 when I was back at ‘my’ hospital Chris O’Brien Lifehouse, but I had offered earlier this year if there was any way I could help spread the news about head and cancer awareness I would like to do so. I had already been sharing the work of Beyond Five here on the blog for World Head and Neck Cancer Day 2018.

Following that day, the Board of Beyond Five met, Sr Froggatt and Professor Clark are board members and Nadia Rosin is Manager, Business & Communications,  and I then received a formal letter of invitation to become a Beyond Five Ambassador.

Role of Community Ambassador

  • • Share your personal head and neck cancer story for use in Beyond Five communication e.g. website, social media portals etc.
  • • Raise awareness of Beyond Five through family, friends, other personal connections.
  • • Where possible, attend events e.g. patient support group meetings, education days to help raise awareness of Beyond Five.
  • • Support Beyond Five grant applications where relevant e.g. as a consumer representative.
  • • Provide feedback to Beyond Five to help us improve and develop the way we work.

About Beyond Five.

Background

Beyond Five was established in December 2014 and is Australia’s only not-for-profit organisation supporting patients with head and neck cancer, caregivers, family and health professionals.

Beyond Five was established to provide evidence based, comprehensive, easy to understand and easy to access information to everyone, regardless of where they live.

Beyond Five is the first organisation in Australia supporting patients and their families through their cancer journey, from diagnosis to treatment and life after cancer.

Mission

Beyond Five’s mission is to improve the quality of life of everyone affected by head and neck cancer through education and access to support and to raise awareness of head and neck cancer nationally. We are committed to working collaboratively with all specialties across Australia to achieve our mission.

 

I have joined the inaugural Ambassador, Julie McCrossin and Marty Doyle too. Their stories and mine, can now be found here on the Beyond Five site. There will be more ‘thinking time’ for my involvement and what form it may take as everyone is going to be on a break soon. We are getting together in February 2019. I look forward to helping where I can especially now I am post almost all of my cancer treatments and now in ‘check-up and check-in’ mode.

I know that I am keen and ready to help others learn more about head and neck cancer as it is not well-known. In fact I had no idea you could get squamous cell carcinoma inside your mouth (and other areas of the skin inside the head & neck region, till my day of diagnosis in May 2017.

And here we are sending Season’s Greetings.

I wish that no-one had cancer of any kind, of course, but the fact of life is we do. I want as many do, to help pay back the time and effort and research that has gone into the amazing surgeries and mouth reconstructions I had. That I can smile and eat well again is testament to the wonderful work of my team and their integration of allied professionals too. I have written posts about how many helped get me well again. Now, it’s onward….and to say I am glad to be an Ambassador for Beyond Five is an understatement. It is an honour and a privilege to be in this new role.

I want to do the role justice, and help others as I too have been helped.

Thank you to the Board of Beyond Five for entrusting me with this role as your Ambassador.

Denyse.

Joining with Sue and Leanne here for Midlife Share the Love and with Leanne here for Lovin Life link up.

 

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Thank A Teacher. #LifeThisWeek 26/52. 2018.53.

Thank A Teacher. #LifeThisWeek 26/52. 2018.53.

It’s coming up to end of first semester or end of term 2 2018.  School holidays are about to commence, or have and are not far off in most states and territories of Australia. I know that folks in the Northern Hemisphere are also on the long school summer vacation.

My old Primary School: I went here and taught here for 2 practice teaching times.

There’s a saying around that ‘teachers have it so good’ :

         9.00 a.m to 3.00 p.m. It is a great career. Look, the hours AND the holidays!

 

 

 

 

 

Do you believe it?

Well, here I am to de-bunk that myth right now!

These days here’s what most teachers are up to in the so-called holidays….

  • attending professional education conferences as attendees and presenters, most often at their own costs
  • planning the work that they will be presenting as part of the beginning of Term 3 called ‘SDD’ or ‘School Development Day’
  • meeting colleagues in schools and other venues to share ideas, make programs and plan for the educational needs of the students in the schools for Term 3 and beyond
  • marking essays, projects, assignments and adding to the program requirements for the term ahead to enable kids’ best learning to occur
  • making most of the child-free environment in their classrooms/halls/libraries and faculty areas to plan, file, cover books, accession records, add information and ‘get the work’ done so that when the kids return the priority is teaching and learning
  • attending to their personal and professional development by working on their portfolios and making plans for meeting the teaching standards as per the Australian Curriculum and their Education Authority.

 

My first…and last photo! This High School was where I attended 1962-67. Then in August 2015 I re-visited and presented for the last time to a professional meeting of teachers.

  • attending Winter Residential schools as they complete their post-graduate courses or degrees. Others may be teaching at Universities which often have holidays outside school holidays.
  • volunteering to help kids in school holiday care settings & camps where they may be paid to supplement wages.
  • One person who is very close to me, completed her Masters In Education (Teacher/Librarianship) over the years during HER school holidays, taking some long service leave to finish the last semester (busy single mother with 4 differing needs’ kids) She also volunteers at a Museum in Sydney in her not-spare time.

My Graduation M.Ed & our daughter’s over 23 years later!

They also make some time, I am hopeful, for caring for themselves physically and mentally by having some time out to personal care, relax, meet with friends and spend time with family as it is important to come back to school well and ready to go and….

Term 3 here we come. but not quite yet..

Maybe when you see your child’s teacher(s) next how about saying ‘thanks!’

My very best wishes to my family and friends who are teachers.

I KNOW how much you needed the ‘break’ and how hard you work.

The ways in which to thank a teacher are many but I always loved those who took the time to tell me face to face or to write it. It was never about the gifts. Always about how I was made to feel. Appreciated.

Once a teacher, always a teacher. It’s in me. I cannot let it go but I also love that too!

End 2009 official last days as a teacher. Unsurprisingly there were a few more!

Denyse.

Joining with Alicia here for Open Slather. She is a teacher too.

Life This Week 26/52. We are HALF-WAY everyone!!

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: 27/52. Taking Stock 3. 2/7/18.


 

 

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How Did My Blog Start? 22/52. #LifeThisWeek. 2018.45.

How Did My Blog Start? 22/52. #LifeThisWeek. 2018.45.

In late 2010 I started a blog called Memories By Denyse.

The purpose, back then, was two-fold. It was to chart the story of the life of my husband as his memory became affected by what we were told was early dementia. It was also to showcase my photos because I take photos for memories.

Great start! Yes AND No.

  • getting a website and domain name was easy through my internet providor and they hosted (still do) the blog.
  • I found someone on line to set up the blog and then I had NO IDEA of what to do to change anything. And it really meant me paying others!
  • I’d like to say here is that first post but no. In fact almost all of my posts from 2010-2014 are now either in draft or gone to bloggy heaven.

So, what happened?

  • never one to do things simply, I decided after the first ever Aussie Blogging conference in March 2011 that I needed to write about more.
  • of course I did. So I added education. After all I was a retired principal. I also thought I could help both parents and teachers.
  • in fact in 2012 I was a guest blogger speaker at the Digital Parents Conference in Melbourne telling ‘my story’. Oh. It’s still on YouTube somewhere and I cringe because…
  • it was found that sometime that year that my husband’s so-called medical condition was the FAULT of every darned medication two specialists served up to him based on mis-diagnoses.

Hold on, I am going too fast! 

  • when I decided to go down the three blogs route because I could write about them, I complicated my on-life with: Memories By Denyse, Ready.Set.School. and Ready.Set.Teach. Yes. I even copyrighted my names and intellectual property.
  • Hold ON!
  • OK. I am stopping to explain that I started again (still had the domain name and could add as many blogs as I liked) WITH the most patient man ever. MY computer techie guy as I call him.
  • I met him in a local cafe and with the help of MY hand drawn examples, he came up with the way to make all three blogs work for me on-line. And after all this time, if I run into a blog issue I can call him. He’s the best and most generous person and does my work pro-bono! He did HAVE to give me lessons though. The main one was: Keep the number of plugins small & reduce the file size of your photos (yes, Craig, I have!)
  • They were all wordpress models using my own hosting.
  • But I over-did it. By spreading things too thin.
  • I used my skills and talents outside blogging with parent groups and pre-service teachers and a person blog for me. I used to tell stories about our family (not naming names) and with permission I used pics of the grandkids.
  • I was also teaching at Uni, caring for grandkids on some days of the week, and spreading the word on school readiness via my education consultancy business
  • I blogged up to 4-5 times a week and linked up. Back then there was a link up for each week day and on weekends it was Weekend Rewind.

What made me stop and think?

  • Blogging certainly brought me many new friends via commenting, blog link ups and social media. That was great. I continue to be grateful for that once I had fully retired from teaching at all levels and grandchild care.
  • Blogging for money was the goal at one stage for many bloggers and not wanting to be left out, I did some sponsored posts for a company who gave me a grant to attend a conference in Melbourne. (remember the My Family Stickers??)
  • I started to consider the ramifications of advice I was giving on the two education-based blogs and as I had to take out personal indemnity insurance for my education consultancy (costly, over $1000 annually) and blogging was taking OFF ….when I read about Blogging and The Law.
  • School Principal me considered a lot that was being disseminated and over the time of 2014 two of  my three blogs shut down at my request.
  • I did not keep many posts at all. It also helped me with costs at the hosting end to delete a lot of the blogging posts and photos and I do not regret that.
  • The posts relating to the family were all deleted and trashed (sounds terrible) at the hosting end even though there were no identifiers but I felt better as time past that there would be no digital footprints as any searches sent people to 404 error message.
  • It felt a bit sad when it came time to renew the hosting and the domain names but I let them go to focus on:

Denyse Whelan Blogs.

  • I needed something familiar and connecting me to others when we moved away from all I knew. Family, Sydney and Work.
  • I made a commitment from 1 January 2015 to blog EACH and EVERY day.
  • Yes, I did that until sometime in 2016 when I eased back but for sometime I blogged via topics which I continue to use as a guide today. I had a friend I met when I was making a logo to attend a conference who helped me greatly with these graphics in 2016. Thank you Tanya!
  • By 2017 and into 2018 this blog posts on Mondays and Tuesdays, and the topics vary. See above!
  • I linked up to the link ups that I knew were still around back then, but slowly they shrivelled up too.
  • Blogging was not something everyone continued. Many focussed on jobs once kids were at school. Some became dissillusioned with the blogging promise. 
  • By 2014 there was no more Digital Parents and some groups emerged on Facebook. Problogger conferences were/are the only ones that are around. I went to one in Melbourne in 2012.
  • In 2016 I got the opportunity to host my own link up and chose Mondays as Kirsty had retired her link up. Alicia has a link up too on Mondays as does Kell.
  • In 2017 Leanne made a Thursday link up as did Sue and Leanne each Wednesday
  • Kylie hosts I Blog on Tuesdays after Jess retired her blog.
  • There are far fewer bloggers linking up these days and my view is that people are busy with life, are not blogging much and to commit to a link up would mean commenting more and some just do not have the time.

Why Are Link Ups Important?

  • On a personal level I know that I get more people reading and commenting than if I just posted.
  • I deliberately do not have an email sign up because I did and I had few people sign up.
  • I know rely on my Bloglovin’ follow on my blog and me adding my posts to facebook.
  • But I love link ups because I get to meet new bloggers and that is the joy of blogging,

Connecting is Why I Blog.

  • When I returned to full-time blogging in 2015 my blog’s name is Denyse Whelan Blogs (then I added) To Connect.
  • Humans thrive on connection and on-line is one of my daily ways to do so.
  • Moving to a new area and three house moves in that time means that many of my connections are as they say in the computer.
  • I will continue to blog as long as I enjoy it and I have people reading and adding their comments. The conversations are the best!
  • Last year my cancer diagnosis was one very big example of the connections and care in the blogging community and I am always grateful for that.

Tell Me, How Did Your Blog Start?

I know not all of my readers are bloggers but I am really looking forward to reading everyone’s stories if they have decided to follow the optional prompt.

Denyse.

On Mondays I link up with Alicia here.

Life This Week 22/52.

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: 23/52. What I Will Never See Again. 4/6/18. 


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Learning To Deal With Uncertainty Via Cancer. 2018.28.

Learning to Deal With Uncertainty Via Cancer . 2018.28.

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

Perhaps I am short-changing that time frame.

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

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

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

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

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

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

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

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

Three major triggers during 2014 and into 2015.

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

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

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

Where were we?

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

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

And in some ways I was.

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

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

OH. I cannot control anything really.

At all. I can control my responses.

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

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

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

Late March – early April 2017.

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

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

THEN. May 2017.

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

WHAT DOES HAVING CANCER HAVE TO DO WITH UNCERTAINTY?

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

Nope. That was a BIG lesson.

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

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

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

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

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

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

patience

courage

confidence

trust

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

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

Do you have any issues with surrendering control?

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

Denyse.

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

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

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

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

 

 

 

 

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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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