Tuesday 28th June 2022

Telling My Story. Chapter Twenty One. Part 2/2. 2015. 19/2021.

Telling My Story. Chapter Twenty One. Part 2/2. 2015. 19/2021.

The backstory first:

Well over a hundred three years ago ….I thought it was time, seeing I had a blog, to start writing my story. It was on advice from a blogging friend, now published author that I did. Then, for a long time I did not. Because cancer was diagnosed.

Nevertheless, I eventually returned to the story and now I am at...Chapter Twenty One.  Part Two 2015. Part One was published here.

So, in keeping with my ethical approach to all things, I am making the chapters about MY recollections to various changes in life for me, and us, and life as we knew it. I hope I can continue sharing the story without any intentionally negative or hurtful references to others who are in my life as friends and family members. All of the stories to date found here.

Well, it seems I survived my first half of 2015 living at the southern end of the Central Coast but wait, there is more, much much more.

Are you ready?

Here we go:

June and July.

Emotions Are Tricky!

We had some reasons for visit Sydney: my gastroenterologist who was happy to see me and with a positive outcome from an MRI done back in May he believed my insides were OK but that I.B.S. was just a part of me that needed my management.

Neither he nor the GP had any reason to be concerned about my weight loss over time which was in fact because : I really couldn’t bring myself to eat much at all as almost always it would result in some kind of stomach reaction.

It was truly horrible for me who WANTED to be social but could not go out for lunch or entertain for a meal. I stuck to coffee and cake – if I could even do that and most people who cared about me understood that.

I on the other hand was very self-critical. And would continue to be for years. Seriously. Yes, I was blaming me for things that were probably needing compassion and kindness but “black and white” thinking Denyse had not quite given up her harsh words.

We had grandkids who we love dearly come and stay for a couple of nights and whilst I love their company I got myself overly worried about things and them and found the stress bothersome. I did not like that either.

Yes I was doing meditation. Every day. I was seeing my G.P. pretty often too. She was running out of ideas for my emotional equilibrium and on one occasion when I was at breaking down crying point, put me onto an anti-depressant. I agreed to it. My husband was sceptical but went along with it. I took it once. I had such a physical reaction to it that I declared “never again”. Suffice to say, after days of diarrhoea my G.P. wholeheartedly agreed.

I blogged. Every day. By this time, I was now joining in link ups and that helped me have some conversations on line.

I joined in a private group where we supported ourselves trying to Flourish. There were some great programs in there and from there I added to my repertoire of mindfulness by doing an on-line MOOC course from a Uni in Melbourne learning about Mindfulness and Stress. Excellent work.

I had already begun my large collection of writers, scholars, and more who I would learn more from and about and this helped me feel less alone.

My post here on Calm Days and Calm Nights has all of the titles I found useful to grow and learn.

My husband was, when he could be, an amazing support. I did however, have very few people to talk to and with and this contributed to more isolation.

Dealing with family news was hard on me. I simply did not have the emotional capacity to support as I might have now because I had no skills, and I was totally trying to deal with myself.

Sigh.

August, September and October.

Dear readers, assume that I continued with my health care and seeking answers.

  • These also included things like going for a drive,
  • watching the waves,
  • walking on the beach and near nature.
  • Whilst I did (do) enjoy going to shopping centres, I am afraid to say I felt lonelier there when I saw people with their grandkids and/or friends and chatting.
  • I wanted that. I also knew, intellectually I had had that and now it was no longer happening. Sigh. Again.

We celebrated our daughter’s birthday at our place.

She took some images of us for a TV program called Compass about married couples. Our shots were part of the promo.

Family time was always welcomed but I had become hypervigilant and that did not help my stress and I.B.S.

I had my last role in education. I was invited to be part of a Teach Meet and it was to be held at my former High School. Last visited by me in 1967! It was a thrill to present there and to get to have a tour of the school to see the many changes. Grateful and proud of doing this one last talk of my career.

We had a short stay in Parramatta while my husband attended a compulsory course for his degree and I was alone for some of that time and did catch up with our family. My level of anxiety staying there and no longer being in our home rose and I would not do that again. I did see one of my granddaughters for a play and we went to tea at our daughter’s house but I was not great. Tried to look it..but…

By this time we were certain we were not staying on…in this overpriced rental nor in the area. It was a strange place. A town like no other. We have lived in country towns but this was not friendly. Sadly. I began the search on-line and then in real time of the northern end of the Central Coast and it seemed like a place and area that would suit us more.

As luck would have it, on a drive past the house we saw on line in October, the owners (former, actually) were around and asked did we want to have a look inside. Oh, yes please. Totally not supposed to do this of course, but we did and knew, if we could, this would be the one. It was to become that indeed! But more to come…

November into December. Big Months but Better Ones! 

The House. We got the new house to rent and it would be…over $150 less than what we were paying and it was a one level ducted air con, 4 bed, 2 bathroom house…very similar to what we had sold. Suddenly things were already looking better. BUT…

As we were breaking the lease of the other place, and they could not find anyone to re-lease it too, we did DOUBLE ups till the end of December. Not great.At all. However, the emotional relief was worth it.

Now instead of being separated from each other at night, as he went upstairs to bed, study and TV and I stayed downstairs, we would both be on the same level.

The move itself was OK. I took the chance to do more culling and all that but we still had a lot. Probably still do.

Nevertheless mid November we were northern end of the Central Coast inhabitants and pleased to be there.

For my 66th Birthday I tried something challenging and whilst I did it I know it was hard for me because of …..you guessed it…I.B.S.

  • I drove to see our family at our son’s place for an afternoon tea catch up and small birthday celebration.
  • I was in heaven to be with all of the family but it was tense.
  • I now know from this many years vantage point, it was not something from anything I had done. Nevertheless I feel things. 
  • I then joined our daughter’s family in a crowded and busy household for Christmas decorating day and dinner.
  • The next day, my actual birthday they all went to work and school and I saw my son’s two little ones and their mum and then drove to my Dad’s for a morning tea with my brother, sister in law and Dad.
  • THAT was a very full on couple of days for me. But, I did it.

 

Coming up to Christmas I was determined to see Dad if I could and drove down with some goodies and we said we would not travel to anyone on Christmas Day. I think that was because I was thinking about me, traffic and….you guessed it I.B.S. Truly that IS how much it affected me.

I stayed with the same doctor I had started seeing when we lived closer, and between us we always hoped things would improve for me. I began seeing a fantastic psychologist who challenged me and my often-critical thoughts and gave me assignments to help me learn by observing. She was keen for me to continue my art which grew hugely by the time we moved to this newer and better house because I had a dedicated area for my creating. That was so good. I also had space for private meditation and listening to some of the many people who helped me, eventually, find my way.

I.B.S. would continue to challenge me. It affected all I did. I could not plan to leave home unless I was pretty sure I would be OK. I had to know of toilet locations. I carried spare clothing and clean up items with me. I hated it but I did that. I did, though, find more to help me via another book and a course. All are too much in detail to outline here but they gave me an understanding that my emotions were in my gut and it was telling me how I was.

In the next couple of chapters, 2016 and 2017 I.B.S. continues to get a lead role…even though I hate admitting that.

And into 2016 here is what I hoped would help me.

And whilst it may not have worked like a charm…this did.

I got right back into blogging getting help from my kind friend Tanya (who still does my images) and with her help and my ideas I began 2016 rocking the blog with categories, and more. I blogged daily until around September 2016. More on that next post.

Phew.

Re-living this was a challenge as I wrote but I also got to congratulate myself for coming through. Little did I know, of course, that much more was in store for 2016. No, the family issues and my health ones did not go away. And then we will come to 2017…and many readers already know about that BUT we can wait, right?

Thanks for your kindness in reading these posts…if indeed you are here, then you must have!

How was 2015 for you?

Denyse.

Joining with Leanne for Lovin’ Life Linky here.

 

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Telling My Story. Chapter Twenty One. Part 1/2. 2015. 15/2021.

Telling My Story. Chapter Twenty One. Part 1/2. 2015. 15/2021.

The backstory first:

Well over a hundred three years ago ….I thought it was time, seeing I had a blog, to start writing my story. It was on advice from a blogging friend, now published author that I did. Then, for a long time I did not. Because cancer was diagnosed.

Nevertheless, I eventually returned to the story and now I am at...Chapter Twenty One. Part One.2015.

So, in keeping with my ethical approach to all things, I am making the chapters about MY recollections to various changes in life for me, and us, and life as we knew it. I hope I can continue sharing the story without any intentionally negative or hurtful references to others who are in my life as friends and family members. All of the stories to date found here.

Telling My Story. Chapter Twenty One. Part One. 2015.

As I have noted in previous chapters, the memories from some years remain strong, and often are sad ones. However, despite this being true for me, I must push on, as they say, and share how life was for me…in 2015. Back then.

Time To Move (on) and More.

As mentioned in Chapter Twenty, we sold our house and were ready (I thought I was anyway, he was!) to make this big move in our lives.

January.

After new year, we continued our packing up AND memory-making. My husband was very keen to leave the house, the gardens, the grounds and the pool in tip top shape for the new owners as settlement loomed for mid-January.

I on the other hand was keen to enjoy what I would not be able to in my future,  and that meant some grandchildren sleepovers and swims and get-togethers. My Dad had his 91st birthday with all of his then family around him at my brother’s house. We made trips to and from the Central Coast house we were about to move into and I guess being THAT busy helped to block the emotional pulls that would eventually wound me.

And we were off…kind of. I went in my car, fully laden to the Central Coast house. My husband stayed back to oversee the removalists. This was not a great day weather-wise and the person we booked the move with was on holiday so he sent another team. Nevertheless most of everything that could be packed up and moved on that day was. The remainder was collected by my husband when he returned on settlement day to be with our agent and the new owners.

A note on the house we rented.

IT WAS UNSUITABLE in so many ways and I will admit this was chosen in haste, and in deference to me, my husband went along with it. Sigh. Everything I thought I needed to be for a change of residence was not to be.

Remember too, I am writing with the benefit of both hindsight and a much clearer state of emotional health.

  • I did not need to be closer to Sydney 
  • I did not take enough time ….knowing there was a rush before Christmas….to consider how this house’s structure would affect us
  • I was in a highly emotional state for the month preceding the move and could not really see any other options (then) than this house.
  • It was over-priced
  • Its two storey nature was awful. A spiral staircase led upstairs
  • The ‘only air-con comfort’ was in one part of the living area downstairs and a part of upstairs
  • We paid more than our budget told us…and literally over-paid till the end of the lease when we had moved out early. Story about that ahead.

And then it happened. Done. Settled. 

Originally we were selling to be debt-free and I was not able to continue working from a health perspective so it was the plan to sell up, pay out the mortgage, use some house sale funds to purchase new cars (both of ours were in a bad way by the end of 2014) and to have some savings behind us to maybe help buy a new house ONE DAY.

That was how it worked out. However it was not without its moments! After settlement we were able to go grocery shopping and yay for me getting a coffee too. However, at the checkout our card was declined. Oops. We had a few dollars on us. So, once home I was able to tell our conveyancers what had happened and because ‘funds are released into accounts over some days’ and we had a weekend without any $$, she arranged a transfer of the original deposit from the new owners. Phew.

Cars. We had already earmarked a car for my husband and it was ready once the funds had reached our account. My choice of a car however, should have been a heart one…but instead I made it a head one…and regretted it as soon as I drove it back up the coast. In a story of generosity and forgiveness…my husband determined that I could have the car I should have bought in the first place, and we traded in a car I had for less than a week. Lost money? Of course but lesson learned. Again.

Love my Nissan XTrail

Some family fun. January and February.

We were keen to live close to the water in this retirement life of ours and had chosen the Central Coast for both its proximity to water – still and ocean – and again, to Sydney for any family needs such as visiting my Dad and any connections with our adult children and their children, our beloved grandchildren.

Because we went back and forth a few times until school was back we entertained two grandchildren  twice and they had been coming to use for care since they were babies so it was great to have those connections still.

What Happened Next?

My husband got back into his studies for a degree in counselling and was doing two subjects on-line. He also offered to help his brother who lived nearby with some landscaping and renovations. He continued to do lifeline crisis support counselling by working shifts in a place on the central coast. He was active, productive and busy.

I was not. Well, in some ways I was but none of what I was doing helped me feel in any way settled into this new life of ours.

  1. I thought I would be driving back and forth to our family to help out, to be there and to catch up. I did for a while. I was happy to be on-call for our son’s family as they were expecting their fourth child in early 2015 and I could come down to help with picking up kids from school etc etc.
  2. I thought I would be continuing my education specialist role with the early childhood centres
  3. I thought I would drive to see my father on a regular basis
  4. I thought having made this move as a choice to change lifestyle, it would be fine.

No it was not for me.

March, April and May.

I was not well in an emotional sense and that affected my physical health. My I.B.S .(irritable bowel syndrome) reared its ugly head over and over. I would not be able to simply get in the car and go anywhere without having to medicate myself (which I HATED doing) or suffer the effects of having diarrhoea on a car journey.

We tried a little get away to Port Macquarie – a place we always loved – but I found the trip stressful due to I.B.S. and like I felt, nothing is the same.

I lost weight. Yay. But not for the reasons it happened. I was unhappy but trying to hide it. I continued to see my Sydney based G.P. who oversaw my handling of my I.B.S. and decided I needed to see a gastroenterologist. But before then we had a new granddaughter arrive.

Emotions were high and a bit low because of my sadness at no longer being around the little people I love so much.

We went back to Sydney to celebrate a granddaughter’s 3rd birthday and I was intensely happy to be with all of our family again, but sad once the inevitable farewells took place.

We literally weathered an awful East Coast low storm situation that had us without electricity for almost 5 days after the birthday party visit. I was very stressed during this but, my husband did what he could to make us a bit more comfortable going out in awful conditions to buy a generator and a portable gas stove. At least we could run our little fridge. All freezer food was ruined. We would go out in the car once the roads cleared to charge our phones. I managed to blog too.

I went to TedX in Sydney and thought that would be enjoyable. Usually enjoy learning. I did on some ways but now Sydney, where it was held was no longer where I lived. I felt that immensely.

I re-commenced my work as an External Observer with then Institute of Teachers doing an observation in a Sydney school. That was to be my last as the system changed.

I went back to my role as an Education Specialist, speaking at a couple of the pre-schools on different evenings and then one day, on my way back to Sydney to do this, I was overcome by the worst bout of I.B.S. diarrhoea ever. No details but suffice to say, I decided then and there, no job and the money along with the drive to and from Sydney at night was worth it and I resigned.

I was never sure where I fitted any more after that.

  • I was no longer the active and on-call Grandma
  • I was no longer employed using my NSW Education role
  • I was no longer working to help families in pre-schools
  • I could see my husband was content in all he was doing but I was not.

It was very confusing but I did my best to act as if it was OK. It was not.

Add to how it is to change where you live is “finding a hairdresser” and that was interesting. I got a few cuts from a person near where we moved but it never seemed right. Finding a dentist proved easier. He was “OK” and whilst I did not know it then, I would be getting insight into my mouth and what may have been causing some white spots on the gums. Mmmm. A story we do know more about but will leave it till 2017. I found a physiotherapist who was good for some back and arm issues I had. And, a podiatrist. He was lovely. Still, it does take some research. In 2016 I will share how I found my best hairdresser!

I was searching for answers to WHY….as I am a ‘help myself’ person and I found something which was a catalyst for change:

A Meditation Centre running a course on Anxiety and Teaching Meditation.

Then What Happened?

Into the next few months I managed a lot of change in and for my life.

It did not always go well.

In fact I face quite a few disappointments, some challenges and some days where I knew I was making progress with my health. Onward…and the months may get a bit mixed up so I will add points rather than months!

I tried a few of the so-called Retirement Activities:

  • An Art Class
  • Making Up a Mindful Colouring Class & hosting it
  • Going to Places for Coffee and Chatting
  • Training for a role as a Volunteer

They did not suit nor last the distance for me.

Meditation. 

The day at the Meditation centre taught me quite a bit and I felt less lonely as someone finding the new life quite tough. I met some people there and mostly the talk was about where do you live, etc etc. One person gave me a card about a great G.P. practice she liked and said that I would find a doctor there she was sure. You see, I was still making my way back to Sydney and it was no longer easy to do so with I.B.S. and generally ill-ease at returning.

I also decided to download a meditation app called Headspace and liked it very much. I am an early adopter too and it had only been on the market for a while.

I made a time for meditation each day, set up a space in my bedroom overlooking the water and waited, over time, for my cure from the ill-ease I felt emotionally. Reader: it never came.

Finding Medical Help Locally.

From the middle of the year this was helpful. I found the personable female G.P. at the recommended clinic. She and I ‘clicked’ and she was 100% understanding how hard it is to move from Sydney to the Central Coast..because she was living that life too but about a year before me.

The rapport and her understanding that my emotions needed time to work themselves out helped me a lot. To have a good listener and one who suggested ideas which might help me. Sadly nothing offered helped my I.B.S. but she was very supportive of me continuing to use immodium (I had been afraid to do so after being told off by my former gastro guy after a pancreatitis attack in 2014) as I needed. She offered the idea of seeing a psychologist. I was not clinically anxious nor depressed but I was finding the reactions and responses from all the changes very challenging.

I saw one. She was incredibly judgemental and I did not return. I then was referred to another one. So much more professional and I can share more of that later. Let me say this, it was from her that I learned this:

feelings take a lot longer to catch up from actions.

Part Two will follow. I have undertaken quite a bit sharing this so far.

2015 was a hugely significant year in my life so this is Part One, essentially till the middle of that year.

I do hope there is something of interest to you readers too.

Have you made big changes in your life and wondered about some of the emotions you have experienced?

Thanks for your interest.

Denyse.

Joining with Leanne for Lovin’ Life Linky here. 

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Musings On 2 Years Of Living As A Head & Neck Cancer Patient. 56/2019.

Musings On 2 Years Of Living As A Head & Neck Cancer Patient. 56/2019.

I have written frequently over the last two years about my diagnosis with a rare head and neck cancer. You can find the many posts, and ones where I have shared on other sites here. I keep the posts at the top of my blog’s home page to help any other head and neck cancer patients and their families.

Musing One.

What has happened this month?

I am a memory-keeper and in some instances that can be good, others memories remind me of not-so-good times. As May 2019 drew closer, so did the second anniversary of my head and neck cancer diagnosis. I sensed that I needed to mark it in some ways, and that was through writing starting even before May. I also used my creative side and constructed a big mandala documenting every day since diagnosis.

I did these to help me through and to show, when I shared, what the experience was like for me.

Thanks to this blog, and a facebook page along with instagram I got some caring comments and support on-line which I have always found helpful.

What I have also found is that I am the only person who really remembers the lead-up to that morning on Wednesday 17 May ’17 and then how it affected me afterwards.

I guess, “my” cancer is like any life experience that we have as an individual. It’s mine. Yes, I share. (some might think over-share: sorry!) And my dear husband “knows” the stories as he has experienced them alongside me. However, he is  was my carer and now that I am as independent as I can be, I am “the loved wife” in our long marriage. That’s great.

On my 69th Birthday 2018

Musing Two.

How has the lead-up to the anniversary been?

I thought it was good. It was like box-ticking and I felt good doing that.

Remembering what I experienced with the tests before the diagnosis. Ok. I remembered but did not over-think it.

The weather and the dates changing on the calendar also reminded me but again, I was feeling pretty good.

I had two hurdles, if you will, and they were the visit to my Prosthodontist on May 13 and to my Head and Neck surgeon on May 21. These were of concern in a way because at my last visits to each (three months earlier) there was talk of a possible fifth surgery to ‘fill out the top of my mouth.

I can tell you now, dear reader, the prospect of the surgery did not concern me nearly as much as the recovery from it…the LONG time with no top teeth and then more time with getting the mouth healed enough for a prosthesis. I have just had 8 delightful months being able to EAT again and that would be tough. Of course, the smile would change…ok.

December ’18

Musing Three.

What actually eventuated.

Visit to the Prosthodontist.

Dr Deshpande asked me about pain levels. Pain comes and goes in my mouth where it has all been reconstructed and I told him a few weeks earlier it was significant. However, as it settled I did not need to call him. I was much more confident about those calls than I ever was in 2018. He examined the upper prosthesis, the gums, and where the abutments are in the gums. Yes, there was some tiny more skin growth but nothing to be concerned about at this stage.He did a small clean around the abutments and told me what I had been doing every day was going very well and the gums were in good health. Phew. Using the waterpik twice a day was a key element. He showed me around the inside of my mouth and his nurse videoed it as best she could as he explained it all. He is so patient and very thorough and professional. After taking lots of close-ups inside my mouth he told me his view that my surgeon would be unlikely to want to do more re-construction because the skin area of concern back in January/February had not changed. Back for my check up 16 July.

Fistbump! Photo of “us” knowing each other in this professional setting for 2 years.

 

Visit to the Head and Neck Surgical Team.

This was on Tuesday 21 May. Both he and his nurse were delighted to see me and it wasn’t just because I brought cupcakes I had made. They can see a different me emerge I guess, and someone who has taken on an Ambassador role to work towards helping head and neck cancer awareness and both Professor Clark and Sr Froggatt are foundation members of Beyond Five. Again my mouth was examined and as I recalled the words of my last visit “I am a cancer doctor, so I AM looking for cancer” and it all seemed fine I was OK. He decided any choice about more surgery would be determined by what happens inside the mouth. “Could get worse, better or stay the same”. And now would not be in my best interests to do this. Phew. However, I also learned that the interval till my next visit is 4 months, not 6. And that I will require some CT scans as baseline ones. This was a wee bit threatening to my equilibrium but as I do, I went along following instructions. Before I left, I asked some questions about my mouth: here are the answers.

  1. the tightness will remain up top as so much more has been added for the re-construction than a normal mouth would have
  2. sniffing is part and parcel of having the nasal area invaded quite a few times…sniff and manage!
  3. dry top lip probably from not being able to seal off my mouth
  4. need for a new upper prosthesis? “If it ain’t broke, you don’t fix”

Thanks Cate for all your reassurance and hugs too!

Then there was this. “A Photo with Denyse with her Badge on.”

Hugs and farewells and I will be back to Chris O’Brien Lifehouse to have a check up on September 24.

Musing Four.

When having cancer is a reality that I am reminded of every time I visit Sydney for cancer treatments.

Westmead.

Where I see the prosthodontist. I lived in western Sydney and had never been to the Dental part of the hospital until May 24 2017. Since then I have been 37 times. Each time could be lengthy and required patience from me in spades. However, there were some visits that were emotionally bumpy and Dr D and O handled my state of health brilliantly. When I was there recently, the lady of the front desk said “Denyse, we are like family”.

That was lovely. I would not have met so many kind people there without a rare mouth cancer, and where the expertise was right there. Someone working alongside my surgeon in each surgery. Wow. Talk about fortunate.

Camperdown.

Specifically Chris O’Brien Lifehouse, slap back in the midst of Sydney’s major health precinct on Missenden Road. Sydney University on one side, Royal Prince Alfred on the other, and new buildings mixed with the historical on either side.

This is where I first met my professional team one day after being told I had cancer.

I had my husband with me of course. He was (and is) the patient man by my side. So, I recall, being there for the first time, seeing this amazing purpose-built cancer centre which had come from the vision of Dr Chris O’Brien who was on our telly as part of the reality series R.P.A. Such a professional and friendly head and neck surgeon with heart. I sensed I was in the right place WITH the right people straight away. Finding out later that my surgeon had trained under Chris O’Brien made me feel even better about what was ahead. And so Lifehouse was where I had the first BIG surgery and stayed for 10 days in July 2017, then further day surgeries in November 2017, February 2018 and May 2018. Follow ups too mean I have been there 12 times.

Musing Five.

IF I did not have cancer here’s what I may have missed in my life….

  1. the opportunity to take on new information and run with it. I learned I can deal with more than I ever imagined.
  2. getting to know people from the health fields who amaze me with their professionalism, the wealth of knowledge, their compassion, their skills and their genuine humanity
  3. being able to recover as quickly as I did from the decline in my emotional health which was ‘strangling my enjoyment of life’ from 2014 to mid 2017
  4. meeting people from all walks of life: in real life and on-line, a facebook group in New Zealand is an amazing space,  who have also been diagnosed with head and neck cancers: Yet, I still have not met anyone that has had mine exactly: Squamous Cell Carcinoma of the Upper Gums & under Top Lip: no risk factors of smoking or alcohol: rare of rare ME.
  5. the many ways in which I could grow and change to become ‘the Denyse’ I wanted and needed to be again: strong, positive, confident
  6. sharing my story of this cancer and being able to offer help when asked to others with head and neck cancers
  7. becoming someone with a role to play in terms of education and awareness of head and neck cancers working with Beyond Five. The charity to support patients, carers and family members with information, videos, print-outs and connections to local support groups as those affected with head and neck cancer need support “beyond five” years of the traditional
  8. to take more time to actually enjoy what is rather than be longing for what’s next. I add, this is me as a definite “w-i-p” because it requires constant reminding from me to me
  9. a greater appreciation for those who have been part of my life and have added their emotional and other support to me over the internet, phonecalls and visits, along with cards and gifts. I have been spoiled!
  10. to take what I have experienced and give back. I will return to Chris O’Brien Lifehouse on Monday 3 June 2019 to be in the audience to listen to my professional head and neck cancer team talk of what working with and learning from Chris O’Brien was like. This week marks 10 years since his early death due to cancer.
  11. to look at the posters and information about how Chris O’Brien Lifehouse came into being and thank the governments of the day for helping it happen. Chris was well enough to know it would be constructed but his wife Gail took over his role after his sad demise.
  12. becoming part of the community at Chris O’Brien Lifehouse even though I am not there much physically, I donate materials to the art program, I wrote a blog post for their website and I have been in a couple of other site’s telling my story including Beyond Five.

 

Musing Six.

Blogging & helping others works for me to manage my emotions relating to cancer.

I have a great group of on-line supporters who have helped carry me through this story or journey as I call it. I prefer not to use war-words like warrior and ‘beating cancer’ as I also know not everyone does. I have already known of two young women die in the past two months from cancer. Not head and neck but cancer. So it does ache to even talk about that. I know though that we have many people helping with fund-raising to support cancer research and I won’t name any others than these as they are close to my cancer-heart.

The Big Hug Box. I started making some bookmarks for Lisa to include in the Big Hug box back in 2018 and loved contributing to her charity started because as a young mum just diagnosed herself with a rare cancer, she knew patients like her could use a BIG hug. For more about Lisa’s work go here.

Beyond Five. For Head and Neck cancer patients, family and friends. This is a website and offers lots to help. It continues to grow and change but with no government funding, some donations by companies in related fields and one part-time business manager, a fund-raiser began for them in 2018 called Soup for the Soul. Soup is often a food that patients with head and neck cancer can manage and it is comforting. Soup for the Soul is already live and I have a Virtual Soup for the Soul page here. More about that as we get closer to World Head and Neck Cancer Day on 27 July.

Writing my story has helped me manage emotions, experiences and responses well. I am indeed going well two years AFTER my cancer diagnosis. Thank you for being here to read about it.

Denyse.

 

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Two Years Ago: Before My Cancer Was Diagnosed. Series Concludes. 51/2019.

Two Years Ago: Before My Cancer Was Diagnosed. Series Concludes. 51/2019.

This is the final post in the series of five.

Thanks to you all for continuing to read and comment about this very difficult time in my life.

It is only by the review of how it was, I can see and sense just how much I did endure before the cancer diagnosis!

In this month of May, I am reminded by the outside signs: weather, temperature, clothing AND the dates on the calendar exactly what is coming up.

The 2nd anniversary of being told I had cancer.

Wednesday 17th May 2017 at 9.35 a.m.

From the writing of the fourth part of this series till the timeline of this final post, I can remember:

  • trying my best to distract myself from the pain of the mouth after the extractions, thinking “this must be how recovery feels”
  • telling myself that I would be OK even if my emotions were telling me differently…via IBS and anxiety.
  • looking out for ways in which I could share on-line, via blogging and instagram to help me focus on other than my mouth
  • waiting for the first appointment in early/mid May to come so I could return to the dentist
  • keeping myself ‘busy’ with more learning about mindfulness, which included this:

Then mid-May arrived. I needed to visit my former GP on Wed 10 May 2017 to say farewell now I had found our new and current one close to where we live, and I needed some female tests done. I also had the appointment with the dentist on Thursday 11 May 2017.

This mouth of mine was so smelly, sore and downright worrying. I had not really shown the doctor even though I had seen her regularly for 2 years because it was not until the extraction on 6 April 2017 that much became visible.

Once I took the denture out, she GASPED and put her hands over her mouth. NOT a confident move but one I know was from shock.

This view spares you the details but it was no pretty at all. She made immediate arrangements for me to have a CT scan of my face – sinuses etc as she was thinking cancer and an OPG which is a special 360degree X-ray for the mouth. She knew I was seeing my dentist the next day.

Off I went home with a pit growing in my stomach…and of course, I could not think of much else. On the Thursday, I arrived at the dentist’s office with my little cakes and a card to say “thanks for caring for me at the extraction appointment”. Nice. Then it was his turn to express shock – but in a less dramatic way – after seeing the state of the gums AND to send me to the Oral Surgeon for a biopsy. THAT was sorted out very quickly when the Oral Surgeon saw me on the Friday 12 May AND could do the biopsy then. A sneaky suspicion I now have – in a good way – is that my dentist got in touch with her quick smart and said “asap” please.

Whilst I DID get through that Friday, knowing I had to wait till Monday for the results was H A R D…and it was Mother’s Day, 14 May 2017, on the Sunday. To be frank some family issues were making this a day that I was not looking forward to much but, as Mum, I did my best to cover my feelings. Not very well, though as even in this photo I remember all I was thinking about was the results the next morning. I did tell my daughter as she was leaving that I had some test results coming.

Monday 15 May arrived and once the time arrived that I could call to see if the results from the Imaging places were in, I did and I went to collect them: no sign of anything sinister. Breathe out….. Later that day the oral surgeon called with initial biopsy results …nothing sinister found….breathe out….and I called both my Dad and daughter with the news. My husband already knew.

Phew. Dodged that.

Not so fast apparently. It still did not make sense that I had this weird gum thing happening but I took the words of the professionals and believed them.

Wednesday morning, 17 May,  my husband was at Lifeline doing volunteer counselling and I was still in my chair, finishing off the morning paper after breakfast. The home phone rang and it was the oral surgeon. She apologised for the call, but had the detailed pathology report and it was squamous cell carcinoma in those nasty gums of mine. I was shocked but not surprised as I have said before…”it HAD to be something major”.

From then on, it was all-systems go…to a certain extent. I know I had to really get myself into headspace where I could deal with, of all things, the travel to and from Sydney the very next day…and the next two weeks and I did. Typical of me, on that Wednesday, after my husband arrived home and I had my big cry, I was able to go into organisation-mode, and call Lifehouse to find out who Dr Clark was (!) and to plan our trip. I did these trips and managed what I did thanks to my own work, my husband’s amazing support and our GP’s wise words and advice.

The rest of the cancer story is here….and these last words and the photo are of me prior to the first, big surgery in July 2017 and of my thoughts beforehand.

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

  • I made  plans and prepared for hospital,  making meals for later,  and making sure I had sufficient clothes and activities ready to take to the hospital but it was surreal. I was doing this BECAUSE I have cancer. It still did not make sense to me.

  • I know that I saw my GP and psychologist about the surgery and what is meant to have cancer and yes, I cried sometimes but other times I was just numb. THIS could not be happening to me!?

  • My mouth and its discomfort and smell were the source of the cancer and I began to ‘hate’ it.

  • I also knew this surgery was going to take away 3 things that were and are precious to me: smiling, communicating and eating. Made me sad and quite stressed.

  • I was resigned to what the operation was but I truly had no idea of how it would impact me because it was like I was somewhat detached.

  • I knew that the surgery would be within 4-6 weeks of our consultation with the surgeons but oh how those weeks dragged on as I wanted to surgery to be over…but I also did not want to have it. So horrible. It  ended up being 7 weeks after diagnosis.

  • It took me weeks to finally get out the hospital forms and complete them. I just couldn’t before. I had to make myself do them. Filling them out meant, of course, I HAVE cancer and HAVE to do something about it. 

  • I made a decision to stay in a ‘cheap place’ the night before surgery and I so regret this as we were uncomfortable and I spent some of the time ‘feeling guilty and responsible’ because I have cancer. 

  • On the day of surgery, at 6.00 a.m. we  presented yourselves at Chris O’Brien Lifehouse, and then once ‘checked in’  I undressed and got into the paper gown which meant THIS is about to happen. O.M.G. 

  • I said goodbye to my husband and was off….the journey into the unknown…the operating theatre.

     

Thank you dear readers and commenters. It has helped me enormously to be able to document my cancer journey. At the time of publication, it will be almost the 2nd anniversary of my diagnosis. I am so pleased to be well and at this point. Incredibly grateful to many! I will be seeing my Professor, Jonathan Clark and his wonderful assistant Cate next week for what I hope will be a positive outcome and the intervals between cancer checks will spread from 3 monthly to 6 monthly.

I will have seen my prosthodontist on Monday 13 May so I hope that went well.

It did go well. I am maintaining my prosthesis well. Good news!

 

Yay for modern treatments in Australia and reconstruction surgeries that have enabled this senior citizen to have her ‘mouth’ as functional as it can be thanks to the marvels of modern surgeries and the healing powers of my body.

Denyse.

An unlikely entrant for Zen Tips Tuesday, I know, but I sure know I employed a LOT of skills to stay as calm as I could on this occasion in particular. Thank you Min for your link up here.

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