Friday 20th May 2022

Grieving For My Body’s Losses from Head & Neck Cancer. 8/51. #LifeThisWeek. 10/2022.

Grieving For My Body’s Losses from Head & Neck Cancer. 8/51. #LifeThisWeek. 10/2022.

CW: images from my head and neck cancer.

This post talks about my grief and trauma before and following my cancer diagnosis.

There are images that may be confronting.

 

Links and phone contacts are here:

https://www.cancercouncil.com.au/cancer-information/advanced-cancer/grief/seeking-support/

Cancer Council: 13 11 20

https://www.beyondblue.org.au/

Beyond Blue: 1300 22 46 36

https://www.lifeline.org.au/

Lifeline: 13 11 14

 

Before you read on, which I hope you will,  I am  doing well.

This post, however, has been one I have needed to write, probably for some time but it was not till recently did this need become apparent.

Warm wishes, Denyse.

 

It’s a shock to the system when you are told

we will be removing all of the upper part of your mouth and replacing it with a bone, flesh and skin from your leg“.

And to be honest, it has taken me till recent months in 2021 into 2022 to understand this has been a traumatic experience and that I am, in some ways, managing a post-traumatic event.

So here goes. Blogging and sharing has always helped me.

I hope it can be seen as a way to not only get something said but for me to now divulge what a struggle it is at times to live with the ramifications of my head and neck cancer.

May 2017: following my diagnosis the day before and meeting with the men who would form my team and perform the surgery at Chris O’Brien Lifehouse.

My particular cancer, a verrucous carcinoma was in the upper alveolus. Explained here. And the cancer had spread to upper top lip – see left.

After the 2.5 hours of examination – lighted tube down my nose, examination of all areas where cancer might have spread and of course inside my mouth I received the news of how this cancer would be removed.

And that was too much for my emotional system to bear for then…so B and I had a walk along the short corridor to stand here and for me to take a 1/4 valium, a sip of water and to view this scene…

 

and then come back to hear more about the surgery and the ‘what comes next’. I was asked if I was fit to sign and yes I was. I had no idea of some of the words’ meaning but over time I would.

So about the grief then…..2017 into 2018 and when I got my upper prosthesis.

I actually felt relief as an emotion more because I finally had an answer to what was going on in my mouth for the past year or more. I also began to feel confident that this team of specialists was there to do the right thing by me always. My husband, my biggest supporter, agreed.

I blogged. And in June 2017, I wrote this….adding now, as it helps me recall the downright fear:

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 shitscared 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 (I did not know then it would be ALL) 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”.

  • I know I did some reflecting.
  • I also know it took me a while to get my paperwork done at home.
  • I also got ‘butterflies’ in my tummy each time I had the thought ‘I have cancer.’
  • I did some blogging about it too. However, I remember thinking “I don’t want to be known as a cancer blogger”.
  • I thought, and it was mostly correct, that I could write about much more than my cancer, and I did but I did not take into account some of the feelings I may have pushed away…because I wanted to look like and sound like I was managing very well indeed. Almost true but not quite. Sigh.

But I was confident, from the ways in which my professional team described their views, that my cancer was likely to be taken away and most probably not return.

I did not know in the early months, and post the big reconstruction surgery in July 2017 that I would face LONG times in recovery in hospital and at home.

Months

Into over a year.

Four surgeries in total.

Countless cancer checks and times at the prosthodontist : all requiring a 2 hour drive there and back. I did all solo from March 2018 and one with B in 2020.

I found I had more resilience and determination than I knew.

I found I had patience but it too wore thin as I was in a pretty constant state of:

hunger

for foods I could not eat…and so I had to become very creative. See posts here.

Counselling and Help For Me.

Before I was diagnosed with head and neck cancer I had been successfully managing my mental health with a wonderful psychologist in 2016 and into 2017. In fact I saw her before my first surgery and she already could tell I had the many tools needed to deal with what was ahead. I saw her some months after my surgery and we both agreed I was going so well. I was, and that continued for some time. In fact I did go back last year to check in with another psychologist and after two sessions she and I agreed, that with my working through my feelings and more, I would be OK. I was and I am. But…further on…see what can happen!

What a Time: Getting my Upper Prosthesis Fitted. August – December 2018.

Such a big day on 21 August 2018 when I left home with no upper teeth and arrived back with them fitted. I was tired but happy even though they felt weird and sore. There were days and weeks spent back and forth to Westmead for physical adjustments.

Of course I was HAPPY. And of course I SMILED a lot. And was complimented over and over.

That is so nice.

It felt like a reward from the many months of hard yards of surgeries and recoveries and very limited eating.

I don’t think I stopped smiling. It was so life-affirming…yet…

my love of smiling and my smile itself drew me many positive comments and I sometimes felt I needed to share that the smile is actually not the whole story…this IS the blog post I needed to write now. 

However, by myself, there were small disappointments.

I thought (and I had been told!) that I could eat like I used to.

However that was not true I had a limited ability to bit and even more so for chewing.

The amount of physical hardware that is in my mouth meant amounts needed changing as did how long it would take me to eat.

Oh yes, I was still having my memories of 69+ years of eating and at times it would be a very disappointed me who could no longer:

  • eat at a dinner table other than my own
  • go out for a meal
  • eat in front of others – excluding my husband and family
  • use food and socialising together
  • go away to spend a night somewhere (we did but it was incredibly challenging to take all I needed with me)
  • take it for granted that I could eat a meal/snack as I imagined.

So this was the beginning of grief.…yearning for what was and had been and could be no longer….

I dealt with it mostly privately and made excuses to people who asked me to events and outings. Coffee and cake of some kind was still OK. Some people were/are very understanding and accommodating but I still did not truly accept what LIFE was for me now until late 2021.

I realised I was unwell and it was an overload of self-expectations and an unrealistic view of what I was now, as a 72 year old, living with the effects of head and neck cancer surgeries could do.

My body told me it was time to stop. Took me a while to listen!

Admission Of How I Was Feeling. Grief and Sadness. 

With so much gratitude for my return of health, following the diagnosis and being able to accept the role of an Ambassador for Head and Neck Cancer Australia, I did get many opportunities to share the awareness, the stories and more to help others. That sure did appeal to teacher-me. I have been incredibly fortunate to have my cancer removed and doing well. In fact, I guess I even have some survivor guilt. It IS a thing.

I was going well in covid times, as I was able to adapt and work through helping others with head and neck cancer and whilst we could not hold events, I remained a participant where necessary supporting others who have head and neck cancer, and doing what I could to bring my messages of  personal experiences to federal politicians.

Then this year, I became determined to listen more to my body and take better care of my emotional health and I learned that I can say “no thank you”.

It’s been hard.

I am, by nature a people pleaser and an extrovert but I also wore myself out. A post about Being Me is coming soon…and what I have done.

But before I go:

This is the point of what I wanted to say.

  • I am managing my grief now in a better way because I know it is safe to share
  • My times in nature are helpful, as is my reading about grief and cancer, along with my daily meditations

I am also telling more of the truth about what is.

Acceptance of does not mean ” loving” or even “liking” something or situation but when there is no choice..and fighting it makes it worse…then I accept that I have had a traumatic event in my life, and I now share with greater honesty.

And that whilst I have had many, many compliments about my recovery and my smile, it has been a much harder time than even I was prepared to own up to...

till a night this week when tears overwhelmed me as I realised the brutal way in which my body had to be changed…to rid me of a nasty cancer.

This series of images and then the culmination of a graphic goes some way for me to share with the world…my readers and bloggers how it really IS to have had this cancer and the aftermath.

It’s coming up to 5 years in May, since my diagnosis and that is probably playing a part in my looking back and seeing how this has been. I will never discount it as a life trauma now.

I accept it is.

I also know I can admit how hard things are. No longer hiding it.

 

This is the graphic which I made when I was feeling less than understood about how my cancer was affecting me…because it really has been MUCH more than getting a smile back. Much, much more involved.

Life’s traumas are not always obvious until later…somehow we keep going. I did till I stopped.

There are number and links for support listed at the beginning of this post.

I do hope you are OK and that reading this frank account from me has been something that you can see why I needed to share it.

I am doing well.

Thank you,

Denyse.

And I am visiting 98 year old Dad at Dee Why today so will be back to see the post later today and comment as well.

 

 

Life This Week. 21.2.2022.

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Self Care Stories #1 7/51. #LifeThisWeek. Ageing. 21/2021.

Self Care Stories #1 7/51. #LifeThisWeek. Ageing. 21/2021.

Every 7th week for #LifeThisWeek optional prompts it’s about Self Care. Time to take a look at care habits, physical, mental and emotional.

And this year as I began to consider my purpose for continuing this blog in a meaningful way as I am changing, I added a category called Stories About Ageing. I introduced my view on ageing and I sought readers’ comments and thoughts. For this week’s post about self care, it made sense to write about what I am noticing about my habits and what I may need to change or update.

Self Care #1. Ageing.

Physical.

What I am noticing about me now. I am, because I can see from the many photos I have that I am looking older.

Yes, I am overweight  somewhat more now than when I was at my then lightest following my first year of head and neck cancer in 2017. However my doctors (and I!) do not want me to change anything.  I am also showing signs on my face with extra sun spot marks and

….for the first time ever, my hair has begun thinning.

When I first remarked on this at a recent hair appointment my lovely hairdresser said she had noticed it before and we worked on a style that will not show it as obviously. I also mentioned it to my G.P. and he said that because I have had a number of anaesthetics in the past 9 months, the effects can do that to hair and growth.

Recent blood tests showed my low iron has continued and in fact is probably the lowest it has been since my head and neck surgery in July 2017. The conservative treatment of iron supplements just don’t work for me as my sensitive IBS gut (potentially) acts up.

To rule out internal bleeding, because I had a colonoscopy back in June 2020 where all was OK cancer-wise, I am having a gastroscopy and an iron infusion. The first will check any potential bleeding sites in the gut, gullet and so on, and the second will, I hope boost my energy because even with the best of intentions, I do find hill walking hard. So I don’t do it! Update: had the gastroscopy and no bleeding areas but will need to increase use of anti-reflux meds and iron infusion went well but making me, ironically, a bit more tired next day!

Mental.

I have been well following my head and neck cancer surgeon’s visit last September when he said “see you in a year!”. At the time, that came as quite a surprise because I thought I would still be having 6 monthly checks.

I did need to take time to process this news.

Coming from my surgeon, who knows head and neck cancer the best (top one who is recognised by his peers as the best) I needed to believe he was right in his judgement.

It is quite a mind shift to make from wondering if any new swelling, pain or slight change might mean cancer is back. And I have had to work on challenging such negative and highly emotive thoughts. They can take me back to feeling fearful as I had for such a long time and I have to trust in the process that I can be well.

I am well!

Then there is this. In July 2020 and then in August 2020 I had some pretty serious abdominal surgeries. One was a rectopexy to repair and make my rectum work as it should, and when the surgeon was inside, he found a hernia, so that meant two lots of incisions. Big upside down T for me…and readers here might recall the wound dehisced. And that meant more surgery. More and much longer recovery and loss of independence, just as I had it back.

How to handle this?

By letting out my frustrations in some tears and telling my husband how I felt.

And making my home space more comfortable so I could recover in comfort. I also needed to allow myself time to grieve for how disappointed I was I needed a second surgery.

Once I had done that, I accepted with gratitude (it truly works!) and allowed the healing from the visiting nurse, my attendance at the G.P.s to go well.

It did. And now, I still cannot believe the freedom I have from having a fully working well ….body. No more worries about prolapse, and so much more embarrassing times I endured for far longer than I needed.

Emotional.

It’s hard to delineate where this fits in between physical and mental but for me it’s about how my mood is and how I can catch myself before go down any rabbit holes of negativity, regret and future concerns.

I remain in the present as much as I can and this for me has been a game-changer!

In fact, I have many more good and great days now than ever.

It has a lot to do with my own growth via reading, learning, seeing a psychologist some years back, a great G.P. who listens (and always tells me how well I am doing to when he first met me in early 2017) and my dear, counsellor-trained husband.

I have been taking an old fashioned anti-depressant since April 2017 which my G.P. originally suggested I take to help calm my insides when IBS was rampant and it would help me sleep. Since then I have, with his support, continued to take it in various doses.

Establishing a daily routine way back in the latter half of 2017 in my early head and neck cancer recoveries is still the basis of my day and it works. I shift times and so on around a bit but the essence of the routine is this which I wrote about here too:

  • Calm Meditation when I wake. Daily Calm. I lie in bed to do this as I am much more comfy.
  • Getting Up times: looser in structure now as we are retired.
  • Having breakfast and getting into my morning: reading the daily newspaper, blog reading and commenting
  • Dress With Purpose and Go Out Of the House. I continue to do this in a modified way with COVID changing my habit of sitting somewhere for a coffee but the delineation in my day makes this something I look forward to every day.
  • Late Lunch and reading
  • Afternoon for Blogging, Some art and NOW some walking outside somewhere. I got slack about this a while back and I am back into it.
  • Dinner Preparation and Eating.
  • News and maybe other viewing for a while with my husband.
  • Later: shower, bed  routine and Netflix or similar in my wind down
  • Calm Meditation of my choice in bed as I ready for sleep

In Summary.

I do all I can to remain in the present.

I remember to go outside if I need a better perspective for a while. I look up, I walk on the grass barefoot and I might drive to the river just to watch and listen.

I spend far less time than I did in comparing myself to others. This used to be a main source of upset for me.

I look at myself with a kinder eye and a warmer heart. Often.

I remind myself I AM 71….

and it is OK not to be as sprightly as those I sometimes see talking about “as we get older” and they are in fact, maybe 45-50. Eye rolling!

That’s me for now.

How are you going in terms of self-care?

Share in the comments for us all to learn.

Denyse.

Link Up #227

 

Life This Week. Link Up #227

You can link up something old or new, just come on in.

* Please add just ONE post each week! NOT a link-up series of posts, thank you.

* 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: Leave a comment on a few posts, because we all love our comments, right!

* Add a link back to this blog in your post somewhere, or on your sidebar or let others know somewhere you are linking up to this blog’s Life This Week.

*Posts deemed by me, the owner of the blog & the link-up, to be unsuitable for my audience will be deleted without notice. These may include promotions, advertorials and any that are overly religious or political or in any way offensive  in nature.

* THANK you for linking up today! Next week: 8/51 Explore. 22 Feb.

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One Year Ago. Head & Neck Cancer. October 2019. 87/2020.

One Year Ago. Head & Neck Cancer. October 2019. 87/2020.

For the past two weeks, and now concluding this week, on a  Wednesday I am posting a ‘review’ blog post mostly to remind ME of how far I have come in terms of the changes brought about in my life thanks to the diagnosis of head and neck cancer on 17 May 2017. The whole story is here. 

Using some photos I am adding my memories from the time.

Here I go:

October 2019.

 

 

I was very well by this time one year ago. I did have a cancer check in September 2019 and all was good and I was told, see you in 6 months. That brought me to the early March 2020 appointment which was held in “just before COVID times locked down”.

 

 

I was getting myself ready to celebrate my 70th Birthday at the end of November 2019, and had a little look at young Denyse who began loving cake…waaaay back. Mum would have made this. She did not really enjoy eating sweet things but she knew how to bake them for the rest of us.

 

 

 

Just before October 2019 I found out about two other patients with head and neck cancers who also had the privilege of sharing the care and treatment of “my” Professor too. These people found me via formerly Beyond Five..now Head and Neck Cancer Australia, and then read my blog posts here. They reached out to me. One I got to meet in person. The other, another teacher, and I will catch up once we are on some kind of holidays at the same time. Head and Neck Cancer, is as I read recently a lonely disease. It is always good though to meet up with others who understand. The health professionals too as they get to see progress within us.

 

 

 

 

I did have a special and kind friend from my world of art die in early October 2019 and on the day of her funeral, I went to a favourite place of mine that she also loved me sharing, the ocean and thought of her and her family.

 

 

 

 

My gratitude for having an open space by the ocean is well-known. I have, since moving nearer the coast, found solace and a great sense of peace walking on the beach and in the water. The beach I loved doing this has, thanks to the ways of the ocean, become almost inaccessible to people who are older and with a compromised right leg (fibula-less) I won’t go there unless I can access it with ease.

 

I drove to Sydney’s Dee Why to visit Dad in his independent retirement unit in October. He must not have wanted a photo that day. Here I am before leaving home.

 

Later, I drove as I often do, past South Curl Curl beach and stopped to have a little walk. It was a magnificent day. And when I did see Dad in October 2020 he agreed to this photo! He turns 97 early next year.

 

What have I learned in doing this series?

That for me, things got better and better.

They also were very hard on some days to tolerate. Many of those days were long, boring, painful and challenging as so much depends on T I M E to heal.

Yes, that old adage is true…time heals all wounds.

So, as of NOW: October 2020, I am a very well person. Go me.

Actually, also ‘go my husband’ who has had to listen to ALLLL  of the stories from me.

On Saturday 17th October it was 50 years since we met. As this post goes live, we will have travelled to the north west of N.S.W. to the city of Tamworth where we met. We plan to have a couple of days going to towns that were of great significance in our early single, then married lives. There WILL be a post about that you can guarantee it. 

 

I have had a very challenging year in some respects in 2020 with – as for everyone:  COVID 19 and its various means of changing our lives….

  • specifically for me it has been a year of ‘getting more medical and surgical things’ done. I had to concentrate on head and neck cancer until late 2019 so in 2020 there are no more excuses.

 

  • In March 2020 I had both eyes cataracts removed and no longer need glasses for distance or driving. Still for reading but at a lower prescription and I need sunglasses out in the sun.

 

  • In July, and then into August 2020 I had a rectal prolapse surgery (planned) and hernia repair (unplanned). There was a wound healing complication after 5 weeks and I needed further surgery to debride the wound and then  T I M E and a VAC machine and wound changes till all finally healed by October 6. BEST news ever!

 

  • Well, there was more too! Early September, when I was still attached the the VAC machine, my husband drove me to my Cancer Check with my surgeon and nurse, and all was so darned good, I got the news that floored me…”see you in a year.” And….

 

  • On 15 October my prosthodontist checked out my upper prosthesis and declared I am maintaining the area very well indeed! I don’t need to return to see him till April 2021.

I love these images…me with my health professionals. I love that they agree to having their photos taken too.

Check Up with ColoRectal Surgeon

Head and Neck Cancer Surgeon & Me.

With My Prosthodontist

This is why I blog. It is so helpful to share with others and it is a great record for me and my progress.

Thank you for your interest, I appreciate it.

Denyse.

Joining Leanne and friends for Lovin Life Linky here. 

 

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Head & Neck Cancer: My Life Now: 3 Years On. 41.1/2020.

Head & Neck Cancer: My Life Now: 3 Years On. 41.1/2020.

In April 2017, after much searching for “why” my upper gums and palate were so sore, swollen and inflamed, I insisted that my dentist “take the bridge and teeth out, please as…I need to know what is under it.” That was done after almost 3 years of “wondering why” and being told many different reasons by dentists that it was most likely candida and “you are not keeping under the bridge clean enough. Sigh. This story can be found here along with many as I have journaled the Head and Neck Cancer story here on the blog.

On 17 May 2017, after the removal of bridge and teeth, with worsening gum conditions, I received what was, in many ways, the answer I feared or at least had considered over the past year or  more before. Yes, it is CANCER and it is called Squamous Cell Carcinoma and off I was sent to the BEST place and people ever for more diagnosis, subsequent surgeries and much much more.

 

Summing up each year as a head and neck cancer patient with a rare diagnosis. 

2017.

May & June: Meeting my surgeons at Chris O’Brien Lifehouse. Examinations, testing and discussion on maxillectomy and using part of my leg. Visits to Westmead Oral Sciences for future mouth reconstruction preparation. Waiting. Testing. Being very concerned but at least I had the answer!

July: 7 weeks after diagnosis the major surgery of 11 hours. ICU and then recovery in single room at Chris O’Brien Lifehouse. This was for 10 days. Learned that I recover well and that I could speak (hallelujah) and eventually swallow water with no problems. Home. Learning to live much differently. Back for checkups: particularly of my leg which had donated skin and flesh.

August: September: October: at home recovery, lots of community nurse visits, learning how for eat differently and prepare food for myself. Independent walking then became driving the car again Back for a post-op check and to hear what was next.

November: On the day the same sex marriage result was announced I went into surgery for more skin to be added inside my mouth: taken from my thigh. It was all part of hopefully allowing my mouth to eventually settle to take a prosthesis of teeth.

It was announced I would become a Community Ambassador for Beyond Five.

December: watching progress of mouth and sending photos of the inside to my lovely Professor Clark for him to see it was going OK. Always relieved to hear back ‘yes.’

2018.

January: continue as for December.

February: third surgery. Adding a stent into the top part of my mouth to allow skin to stretch and eventually be able to fit in the prosthesis of teeth. Alas, this failed as the stent was removed too fast by my prosthodontic team much to my professor’s dismay and…..

March: I got the news a fourth surgery would be happening. Initially not happy at all, but realised it was inevitable…and my mouth was particularly challenging as they try so hard to work with ‘what is’ to have me look as much as possible as I did post any head and neck surgeries.

April: more time for me to see the prosthodontist to check the healing mouth and for my team to consider what would be next.

May: almost 12 months from diagnosis, back to COBLH as I call it for short….and a much bigger stent added in another 2+ hour surgery. Wow. Thigh gave up more skin for inside my upper lip.

June. July: So many drives back and forth to Sydney for prosthodontic work: measuring, practising with models of prosthesis with the eventual promise of teeth up top…..

World Head & Neck Cancer Day: July 2018. Held a virtual Soup for the Soul a fundraiser for Beyond Five and met the Central Coast Head and Neck Cancer Support Group at Gosford and became a member of this group.

21 August; Yes. Upper prosthesis fixed into the abutments and I had a smile back (a good one too, thank you team) after 14 months.

From then until next year, 2019, I had a considerable number of visits back to Westmead with adjustments and I learned ‘how to eat’ with teeth that were nothing like how my mouth had been post-cancer. More on the page as linked before.

2019.

January. An unexpected visit to COBLH for my head and neck surgeon to examine ‘extra skin’ which had begin to grow near the abutments on one side. This visit, as I found out directly was to ensure “cancer had not returned”. OH. It had not but it threw me a bit because I had not even given that a thought. This was when I realised CANCER is never far away from our thoughts.

February, March, April: some visits to both professionals in my team. Making adjustments and checking progress of skin inside my mouth. I admit I was often nervous of outcomes as my mouth was pretty sore most of the time. No-one could tell me ‘how long’ that would last but I continued to be reassured by my prosthodontist in particular “everything looks OK” “you are doing a good job keeping the area clean.”

May: 2 years since diagnosis and I was proud to have made it. I was incredibly grateful to my body for healing well and to all who cared for me and in particular to my patient and good listener husband.

End May: CT scan showed “all clear”

June: Visits became more spread out to the surgeon and prosthodontist and I navigated using these teeth to eat. It was and is a challenge. My right leg had some changes from the loss of the fibula as my right foot became affected with gait. But all OK really.

July: Continued visits to Westmead and put my energies into blogging about Head and Neck Cancer, interviewing a patient for Beyond Five and being part of World Head and Neck Cancer Day at Gosford Cancer Centre.

August, September, October, November, December. Regular check ups and visits to COBLH and Westmead but longer intervals. In October it was raised by my surgeon that a possible fifth surgery could be planned if mouth needed it but he had no real plans for it at that stage. Continuing to help raise awareness of head and neck cancer in various forms via social media. In November I celebrated my 70th Birthday!

 

2020.

January: continuing own care and progress at home.

February: visit to the prosthodontist where he was pleased with how upper gums were looking. I admitted to him my concern there may be need for further surgery as outlined by my surgeon and he took photos and would confer with him as needed. Took part in filming for Beyond Five series of nutrition videos for head and neck patients, carers and professionals.

Early March: Saw my head and neck surgeon who was delighted with my progress, no surgery needed and I remain “his poster girl for recovery”…see you in 6 months!! I was a guest speaker at a Charity Ball held by 4 doctors at Avoca to raise awareness of head and neck cancer and aid the work of Beyond Five with a generous donation.

And then COVID-19 stopped us all in our tracks for quite some time.

End May: as I write. My prosthodontist should have seen me for a check this coming week but Westmead is not open for regular visits yet. I am not concerned as my mouth is OK. I am not due to see my head and neck surgeon till September. I am going to my dentist here (the one where we got the diagnosis sorted!) in early June as he ensures the 8 teeth I have remain in good order.

Record Keeping: For Me!
Visits to Prof Jonathan Clark: Chris O’Brien Lifehouse. 2 hours each way by car. M1.
2017
Diagnosis: 17.5.17.
18.5.17 (diagnosis: surgery plan w A/Prof too)
6.7.17 (surgery #1 in COBLH)
27.717 (post op: A/Prof)

10.10.17 (cancer check)
15.11.17 (surgery #2: day. Down & home same day)
20.11.17 (post op)
5.12.17 (post op St George)

2018
7.2.18 (surgery #3: day. Stayed night before)
14.2.18 (post op St George)
1.5.18 (pre surgery #4)
16.5.18 (surgery #4 day. Stayed n/b)
2.10.18 (cancer check & upper prosthesis)
– long time between checks as I was seeing Prosthodontist a lot!

2019
8.1.19 extra cancer check: skin growing ok
19.2.19 cancer check
21.5.19 cancer check & CT done. All clear.
24.9.19 cancer check

2020
3.3.20 cancer check.

17 total to date.

Next due: September 2020.

Visits to Westmead Prosthodontist. 2 hours each way by car. M1.

2017  24.5.17 (pre surgery #1)30.5.17 6.11.17 (pre surgery #2)

2018  23.2.18 (post surgery #3) 1.3.18  7.3.18  15.3.18

22.3.18 28.3.18 12.4.18  28.5.18 (post surgery #4) 31.5.18

12.6.18  15.6.18  18.6.18  25.6.1  3.7.18   10.7.18   16.7.18

23.7.18   6.8.18   9.8.18

21.8.18: Upper Prosthesis Issued

28.8.18  10.9.18   25.9.18 8.10.18 (lower denture prep)  25.10.18

5.11.18  15.11.18  19.11.18  27.11.18   11.12.18

2019  21.1.19 (unscrewed UP)  4.3.19

13.5.19  16.7.19  5.8.19

17.9.19    25.11.19

2020 17.2.20  41 to date  Due: 25.5.20 (postponed due to COVID

What is life like for me now as a head and neck cancer patient…over 3 years later?

  • I think about my cancer less
  • I maintain my cleaning of the mouth more willingly and never miss it because I would hate the spoil all that hard work!
  • I accept that whilst I have ‘teeth’ on top that look fine, they do not function nearly as well as natural teeth.
  • I know how to allow for that more these days in terms of food choices.
  • I am more grateful than ever to have had such a cancer experience so that I can share, help and be part of a community which may need assistance from a patient like me
  • I am less fearful of cancer’s return but I am never complacent
  • I do my best to help others who may find my story helpful
  • I blog less than those initial 2 years but maintain the updates about head and neck cancer as it is for me
  • I connect with others on-line to encourage, share and offer support where it may be needed
  • I like to help where I can to keep the messages of head and neck cancer current
  • I do this via my social media and re-sharing words, links and information from Beyond Five
  • I maintain social media connections via a facebook group from New Zealand for head and neck cancer patients, carers and families
  • I am willing to share my story for others: meeting them, making a speech and connecting via emails and on-line

However, I am less the ‘head and neck cancer patient’ these days.

I am more Denyse, who is a retired K-6 principal and teacher, wife to B, mother to K & M, and Grandma to eight wonderful grandchildren. I remain passionate about education: of the self, and of kids…and support on-going education at any age. I love to connect via my blog, meet up for a coffee and cake, take photos to share on instagram, make art in all kinds of ways….and get outside to be “oh so thankful” to be here…to be well….and to share!

Denyse.

23 May 2020.

Written, in part,  in readiness for World Head and Neck Cancer Day in July 2020. Events this year will be virtual and I am sure, I will be sharing more as time goes on. For now:

 

 

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