Monday 12th April 2021

Telling My Story. Chapter Twenty Five*. 2020. Pt.2/3. 51/51. #LifeThisWeek.102/2020.

Telling My Story. Chapter Twenty Five*. 2020. Pt.2/3. 51/51. #LifeThisWeek.102/2020.

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 (her story is here) 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 Five*. Part Two of Three.

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.

 

*Rightio…how DID I jump from my last chapter..Telling My Story which was Chapter Twenty to here?

No, I did not secretly write the posts and then not publish them.

But I did have a brainwave…do 2020’s chapter while it is fresh in my mind.

So, here I am with the second four months of “THAT” year we won’t forget in a hurry: 2020. Last Wednesday I published the first four months here.

This is the last post of #LifeThisWeek I will publish the final one of Telling My Story 2020 on Wednesday 23rd December.

Then, over time in the first months of 2021 I will write:

Chapter Twenty One (2015),

Chapter Twenty Two (2016- mid May 2017),

Chapter Twenty Three (later in May 2017 – 2018),

Chapter Twenty Four (2019)

In this, the last post for Life This Week, I want to thank each of you who has linked up, read and commented this year. You are very much valued as a part of this community. I am posting again this Wednesday to conclude this series (the Chapter for 2020 I mean!) and will be back on board for:

MONDAY 4 January 2021. 1/51 Word of The Year. Optional Prompt.

 

Part Two of Three. Chapter 25. 2020.

Now, on with the months of May, June, July and August of 2020.

I have to warn you whilst there are no gory photos there may be some details of the ailments I had that are not pleasant to read. Nor, of course, were they pleasant to have!

MAY 2020.

Family.

Our second granddaughter turned 21 in the early days of May. On the same weekend when the Premier of NSW announced, during a COVID update,  that families could visit each other in their houses, S had her ‘lockdown ISO’ party which she shared with us,  around 2 hours away, via facetime. Her Mum, boyfriend and siblings made it a special night and I am told, she got the cake cooked by her mum as was requested! Congratulations, S!

We actually saw her and the family the very next weekend as it was Mother’s Day and my daughter invited us to her house for Morning Tea. That was the first time we had ventured to Sydney since March. It felt strange being on the M1 and it was not too crowded. Delighted of course to see our family. It was lovely.

On the Tuesday afterwards I drove back down again, in a different direction, to see my Dad on the northern beaches. I had not seen him for at least 3 months as we were being very cautious in making contact with such an older person in an independent retirement place. I took all precautions and they had strict protocols for me and paperwork. I admit, I did give Dad a few hugs. He had missed human  contact other than generally on the phone.

 

My Self Care In May.

My emotional health took a bit of a battering as COVID struck with all its limitations, rules, changes and moving of goal posts. I am not great with change but do accept it’s needed and so I offer myself more kindness, easier inner talk and times out (if possible) by myself in the car and to possibly enjoy a coffee. I was delighted to find a takeaway stall on one of my Sunday drives, and then over time, with limitations some of my fave coffee places which had stayed open, could have a small number of people sit for coffee.

I kept up my art and craft practices and set myself small goals and got immersed in fulfilling those. With the Index Card a Day Challenge starting in June I was ready for that. I did some treat cooking for me and for my local GP practice as the doctors and front office staff went through a LOT in terms of dealing with the regulations and patients!

I continued with drives over to the water once COVID regulations about exercise meant you could walk where you went. I did. Sort of. To take photos. Noticing things in nature always helps me and I really needed it because I had health matters to deal with that were significant.

I also acknowledged that it was 3 years on 17 May 2020 since my oral cancer diagnosis. Important to remember, reflect and be grateful.

Health Matters. May, June, July and August.

I will do my best to use short and helpful sentences..and as my husband suggested: dot points.

MAY:

  • I needed to finally, and actually rather urgently see my female G.P. about the bothersome rectal issues. When I saw her, it was “do this, go here, see him” and “YOU have your whole life ahead of you” Get this sorted. She “IS” that kind of doctor and I love her for it but that day I got a bit scared.
  • She sent me to the Colo Rectal Surgeon and to my embarrassment (not his) I was very reluctant to go through with what he suggested first. A colonoscopy. Why? Rectal bleeding and obvious (he saw, not me, I just knew) rectal prolapse.
  • THIS was a condition I had lived with, tried to anyway for well over 2+ years, and I KNEW it was not good. I blamed IBS for my sometimes incontinence and ageing..but as I have found out no, it was the rectum being very lax and ‘falling out’. Sorry to write that.
  • Off home with the news, and the Colonoscopy pack. It was mid COVID restrictions at private hospitals and I opted for mine at the place 5 minutes up the road. No can do. Till June.
  • Waaahh. That is me who does not like to wait.

JUNE:

  • OK, people, with me it was nerves and more that put me off the colonoscopy but I also knew that without doing that nothing would change.
  • Facing up to it, hating the preparation and the aftermath at home, my dear husband took me to the private hospital up the road and left me.
  • The nurses were kind, the prep sure had done its work and….
  • The outcome, as told to me by the surgeon, was no cancer..but a pretty awful rectal prolapse which he strongly suggested needed repair and to come see him very soon.
  • We did, it was very helpful to have my husband there. The surgeon explained how he would perform an abdominal rectopexi. He would go in via my very old hysterectomy scar, pull up the rectum and sew it onto bone low on my spine near the coccyx.
  • Recovery would be in hospital for at least 4 nights and he predicted success. I was ready to trust him.

JULY:

This post tells something of what was to come for me.

  • Testing, testing. Bloods needing for the major abdominal surgery coming up.
  • Then to the private hospital in COVID times for booking in. In actual fact, it was a phone pre-op consultation but I needed to attend the hospital some 45 minutes away for ECG and pick up pre-operation info and prep. No not the awful prep. Phew.
  • I admit the nerves did play up a bit but I have dealt with 4 cancer surgeries AND I trusted this doctor and his goal for me and my GP too.
  • On a freezing late July morning my husband drove me – bag packed with nighties, all I needed for entertainment i.e. phone & ipad, and loose pants – because coming home my abdomen would be swollen & tender.
  • I was literally dropped off because of COVID.
  • Interestingly the prep I had to take at home before surgery was a drink of electrolytes and I had to have an all over shower body wash with their particular sterilising skin liquid.
  • The worst part for me …is always the waiting before going into theatre but this time was made worse as my surgeon insisted on a series of enemas. OMG. Not happy, in fact I got teary with the kindly nurse. She understood but the back and forth in a gown to the loo…made little better by being on a bed close to it. Sigh.
  • Anaesthetist was very thorough with his questions and also had to give me a spinal. Not impressed by the anaesthetic nurse who was very stressed about my veins. Shout out to him: not good to show frustration in front of patient who is already nervous.
  • Then I was GONE. Out like the proverbial.
  • Recovery: very aware of the pressure boots keeping my legs active, the fact that I could not feel from my waist down, catheter in and to be honest, felt well because “it’s over”.
  • Hiccup in communication between staff in recovery – it was busy – COVID restrictions were easing for capacity – meant I stayed in recovery about 2 hours longer than needed…grrr. Could have been in my room.
  • Something unexpected as my surgeon told me the morning after: he did the horizontal cut as planned but when opening me up, there was a hernia which would need repairing. It required a vertical cut to access it, from the first cut to my bellybutton. All stitching was internal with tape holding the outside wounds. I literally had an upside down T wound area.
  • Fast forwarding: I had an OK time recovering but not comfortable at all. My eating was hampered by my mouth and whilst I could have anything to eat, I was worried about …diarrheoa. Trust me, it didn’t happen but I needed reassurance and my surgeon was prepared to let me go home a day early even before bowel movement because I was needing home. He was lovely. Still is!
  • Saw him at a check up about a week or so later and he told me I was a star patient. Oh, I needed to hear that.
  • No driving, but that was OK. I was just so relieved that all was well  and miracle of miracles, no incontinence. Yay. Unreal.

AUGUST:

  • But. It was not to continue as a star recovery.
  • Around 2 to 3 weeks post-recovery, and I was still not able to drive, there was some redness appearing on the surface near my bellybutton. Husband took me to GP who advised ‘could be a ‘haematoma’ …we’ll keep an eye on it. I did, with photos. BUT….the area of the upside down T was needing greater cleaning by me. At shower time. Sigh. OK.
  • Whilst I am not great with complications, I also understand they occur. Even with ‘me’ doing everything right. I wrote here about what happened.
  • Then I wrote in detail here of the timeline, the circumstances and why it took me till October 2020 to be fully recovered!

 

What a Four Months That Was! 

But wait, there is MORE.

Daily Life with COVID19.

No, we did not have it..phew and all that. But we had to, like everyone, live around its restrictions and rules, and to be safe. For us, who are pretty conservative and intelligent people in their every day lives, it was fine. Really. You see, due to our health matters and not much income, it was never on our agenda to have overseas holidays, or even interstate ones so, unlike many, being home-bound in some ways did not bother us.

I made it work for me, the person who enjoyed her daily outings, by varying what I did at home and combined with my cooking/baking mojo returning, I found I could enjoy a coffee and treat at home some days. I also re-discovered reading the women’s mags. I did! Some got ditched soon after buying, but I have been reasonably surprised by the quality reading in the Australian Women’s Weekly so I buy that now. We gave up our physical paper delivery ages ago and get the Sydney Morning Herald as a digital subscription. All the local newspapers, which I used to love, are gone to digital land…except for one free community paper each week. I still enjoy something physical to read.

I continue my audible subscription each month and listen to some books in the car, and others at night in bed. I have taken to reading along in some cases with the physical book when accents become too hard for me to fathom which character is who!

My art is always here for me. I have, as many know, a dedicated area near my computer for all things creative. Making designs and mindful mandalas is the g0-to for me when I need to ‘concentrate’ or be mindful on just one thing!

Cooking now has a rhythm for a meals each week and we tend to use our batch-cooked meals a couple of times a week, and eat meals made from scratch on others. My dad is the recipient of some of the frozen home cooked meals.

Head and Neck Cancer Awareness and Support.

In the weirdest year ever…. COVID …to date…all things meeting-wise and catch ups were off the table. Therefore the organisation for which I volunteer had to re-think what it did to get messages and support out there for patients, families, carers and professionals.

The June Patient forum at which I was to speak was cancelled and morphed into an on-line program over many days and weeks. My part, on line as recorded by me here, was to respond to my psychological reactions to and management of having head and neck cancer.

The usual fundraising event for Beyond Five was Soup for the Soul and the physical events were not happening, nor were there any of our local Central Coast meet ups. Nevertheless, we worked on getting messages out there via You Tube, and of course, Zoom Meetings. I was not great at zoom so not that involved but as mentioned last time, my interview was on line about nutrition.

More from COVID Year 2020 for Me To Remember!

Apart from hospital homecomings… THIS was a big day and much needed..our son and his four kids came for lunch. Ahhh that’s better!

Grateful for Family Visits.

Thank you for reading..if you got this far. I am incredibly grateful to my readers and commenters.

Denyse.

Link Up 220

Life This Week. Link Up #220

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! Have a great break from now till the New Year. May You Be Well! 
The next link up will be Monday 4th January 2021. Optional Prompt: Word of The Year.

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Telling My Story. Chapter Twenty Five*. 2020. Pt.1/3. 101/2020.

Telling My Story. Chapter Twenty Five*. 2020. Pt. 1/3. 101/2020.

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 (her story is here) 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 Five*. Part One of Three.

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.

My 7th image for Telling My Story.

 

*Rightio…how DID I jump from my last chapter..Telling My Story which was Chapter Twenty to here?

No, I did not secretly write the posts and then not publish them.

But I did have a brainwave…do 2020’s chapter while it is fresh in my mind.

So, here I am with the first four months of “THAT” year we won’t forget in a hurry: 2020.

Posts to date are here.

Next Monday for the last post of #LifeThisWeek I will publish the next part & then probably the final one on Wednesday 23rd December.

Then, over time in the first months of 2021 I will write:

Chapter Twenty One (2015),

Chapter Twenty Two (2016- mid May 2017),

Chapter Twenty Three (later in May 2017 – 2018),

Chapter Twenty Four (2019)

JANUARY 2020.

On the gratitude path. I chose ‘gratitude’ as my word of the year. I love the idea and have a small bracelet I wear, glancing at it most days where is said ‘gratitude’ on one side, and ‘for life’ on another. I do follow through with what I say and writing this now in mid December I can tell you some days it was harder to find and feel gratitude but I managed it.

The Weather.

From October 2019 most of Australia was already in Bushfire Season. So much of the Eastern side, where we live, was as they say, tinder-dry and ready to start a bush fire. Over the time from then well into January 2020, we (Australians) lived with the actual or almost threat of fire taking property nearby or being affected in some ways. The temperatures outside were high. It was very unpleasant to go outside due to smoke which had arrived thanks to the winds also bringing black, fire-damaged leaves.

We did not see clear skies for many weeks. Fortunately, the amazing work of rural fire services, and of those who live in the communities affected went OK for those of us locally. Other places, including rural & coastal South Coast NSW and parts of Victoria did not with massive evacuations of crowds of holiday makers needing to get safely out of there. Some went literally into the water, others stayed to fight fires and some, in long carparks on single lane highways made their way home. It was awful.

Late January. No blue skies to be seen.

Family.

We have 3 January birthdays in the family. All male from my father who turned 96 on the 11th to our son and his nephew our grandson on the same days later in the month. We did not catch up to celebrate but as is usual sent greetings. I know I would have visited Dad sometime that month for sure. We had a grandson start high school, and other grandchildren go back to school or work as applicable.

Dad is 96. OLD…he agrees

Health.

It was time for my annual eye examination and that occurred pretty early at the local OPSM where the ‘on the ball’ optometrist picked up changes that were likely cataract-based and that his recommendation was to see my opthalmologist I see annually as well. This visit to Castle Hill, where we used to see her, also took me in Castle Towers shops some 5 years after my last visit, and like any stranger in town, I was gobsmacked at the changes, many made because of the light rail. Met my daughter and two granddaughters for lunch before the opthalmologist.

Well. That was a bit of news. Yes, I needed the surgery for cataract removal. Both eyes. Yes my husband was right, health stuff happens more after turning 70…And, yes, she would kindly bulk bill us but we would need to come to Parramatta Day Surgery. Check. Booked. Early March 2020.

Finances.

Without going into details, finances are always tricky in January for us and it is not related to spending from Christmas nor birthdays…it’s CARS! When we sold the house in Sydney in January 2015, we immediately bought new vehicles…the other ones were literally falling apart…and so, that means now annually the cost of CTP insurances x 2. Still, we are safe in our two vehicles and we are both independent having two.

Love my Nissan XTrail

And as always when January draws to a close this happens:

1. We celebrate our Wedding Anniversary. 49 years in 2020.
2. Australia Day happens.
3. Teachers and Kids in the family return to school & one grandson started high school.

The end of January is ALWAYS like this and I often feel it should be me too! Old habits and all that.

FEBRUARY 2020. 

This of course, made 2020 different!

After the awfulness of the fires and the altered ways in which families were forced to find housing, let alone anything they owned, there was on the news something about a virus from China called then CoronaVirus. There were half-hearted jokes relating the beer brand and to be honest, not much attention was paid other than..”oh, that seems pretty awful”…and “hope it stays away from us”. Of course, we hoped that.

The Weather Changed.

After the drought…comes the flooding. Of course. Massive rain fronts and more saved some of the land and its inhabitants from the awful threat of the fires. Still, it did not help the many, many animal casualties and deaths. So much was lost. There is a lot of bush regeneration happening. And we saw blue skies again, eventually, after the rain.

Birthdays.

A most important person has his birthday this month and he is my husband. He does not go all out to celebrate so I do that for us both! He did not do anything at all for his 70th last year so this year, we had a small family get together and his wish for a chiming clock came true.

 

Head and Neck Cancer Support Group Meeting.

2020 is my third year of being part of this group of head and neck cancer patients, their carers and sometime guest speakers. I attend in a dual capacity. I am a patient and the Ambassador for Beyond Five. More about ‘that role’ further on in my memoir.

It’s always good to gather with this crew. We are located here on the Central Coast and our commonality is having a head and neck cancer or being a carer/family member. It’s an open type of meeting and all sure are welcome. We usually share our stories and health updates and at times we have a guest speaker as we did at the first meeting for year in February.

Self-Care Rules. 

My routine for self-care has been mentioned in my regular posts via the Life This Week link up, and I note here what continued into 2020.

Most days I dress with purpose and go somewhere for a coffee. I do this too after I have been to the meetings in Erina, often taking time to drive around the Terrigal area as we now live much further up the coast. I was glad I did this on that February afternoon, and stopped for a coffee and cake at Long Jetty because none of us knew what was coming.

Getting Confident Again.

The persona that was Denyse some years back…way back into say the early 2000s to around 2013…loved to get out and about. To go to the theatre, the movies, meet up with friends. Have lunch, have a coffee. Getting together with friends and family was really important to me. BUT, over time, in this memoir of mine you will see the start of how my mood and other issues affected me. It started here. There will be more to come about the not-great-years-for-me of 2015, into 2016 and the early parts of 2017 in 2021. However, this is me recounting 2020 and I became more inclined to say YES to ideas like this…instead of usually NO, thank you.

Tickets to a Show and Driving to Newcastle and Back – Evening Time.

I have found that with my declining confidence what I needed to do was to challenge myself. In fact, that IS the essence of the theory called Exposure Therapy which I reluctantly took on board in 2016. More about that in posts here and here. Yes, some of it was related to potential IBS and some to ‘I cannot eat outside the home’ because of my mouth’s limitations but more than anything I HAD to give things a go.

I did.

I drove to Newcastle, about 45 minutes away, late afternoon in February, found a secure park in the street near the Civic Theatre (I already knew the place from 2019 attendance at Newcastle Writers Festival) and wandered over, then inside to be part of the audience for Chat 10 Looks 3 with Annabel Crabb and Leigh Sales. It was great. I talked to people next to me. I found the car safely in the night time streets, and drove home the coast road way in the rain. So pleased with myself too!

 

Head & Neck Cancer News.

I had an excellent visit to my prosthodontist in February and he declared all was well with my upper prosthesis and that was it. See you in May he said. Sure thing said I. Neither of us know of course..what was to come! OK..we know it was COVID but let’s  not get ahead of ourselves.

Ambassador Role.

As a patient of Chris O’Brien Lifehouse and of Professor Jonathan Clark AM, Head and Neck Surgeon, it is always a privilege to ‘give back’ in a way to help others. I was invited to be part of a new video series that would be made at “my hospital” as I call it, and I would be interviewed about nutrition following head and neck cancer diagnosis and surgeries. I was initially reluctant but when encouraged by the CEO of then Beyond Five, I said yes. It meant a day at Chris O’Brien, and lots of waiting around for film segments to be completed. However, I got to meet some special people, including two other head and neck patients, and dietitians too. My interview went well after an initial  false start. It can now be found here.

MARCH. 2020. A huge month!

The very next week I was back at Chris O’Brien Lifehouse for my then 6 month check up with my surgeon. I took the chance to do quite a tour of the place as I was not in a rush. In fact, it was the first time, in a formal setting, I saw pamphlets about COVID 19 and restrictions of entry into the hospital and of course, that made sense. Those signs had not been there the WEEK before. Things were moving faster. There were sanitisers at the door as well.

My visit was awesome. See you in 6 months! I got to say good bye to Deb who was leaving the art program I had supported, and I drove home. I did not know I would be back in 6 months but under far stricter protocols….that needs to wait till part 3/3.!

Remember the Confidence Growth?

I was invited to be the guest speaker at a fund raiser for head and neck cancer, hosted by young doctors in training on the Central Coast. One doctor, Caity, knew of me from my Beyond Five story and she too had a story there. Her father, only in his 40s, had died from a head and neck cancer. Knowing the importance of awareness raising and the importance of sharing the messages via the Beyond Five site, there was an evening function – a charity ball they called it- on a delightful, balmy evening at Avoca Beach. I was happy to share my story and to help share my information at my little table where I was talking to various attendees about head and neck cancer.

Little did any of us know, on this first weekend in March, that this would be the end of events such as these, thanks no thanks COVID. Feel really fortunate this went ahead and they raised some thousands of dollars. I remain in touch with Caity and colleagues too.

It was a big boost for my confidence. I used to speak off the cuff as a principal many times, and once I had that mic in my hand it was fine. I did have to find something suitable to wear and I did…and to drive myself from one end of the coast to the other. I did.

Eating remains an issue. But I am OK with that.

What I couldn’t do…was actually eat anything there. I did not pay to attend. I could drink water and that was it. You see, despite my normal appearance eating anything other than some cake with coffee, eating anywhere other than home is problematic.

And Now…Cataract Surgeries. Yes, x two in 3 days!

As a couple we had a rhythm for driving together to Sydney for my cancer treatments initially and then I became Ms Independent and as kids say “I can do it myself.” But not for this.

Monday 9 March 2020.

My dear husband drove us to Parramatta for my midday arrival at the Day Surgery. We were booked to stay just down the road at a new to us Meriton apartment. Fortunately he could access the room, and bring up our food supplies and clothes. Meanwhile I had a LONG wait as many people were there for similar types of eye surgeries. On this day it was my right eye. There were some COVID type precautions including questions about where I had been. No restrictions on other people being with waiting patients.

It is a LONG wait with weird stuff in your eyes but eventually I was ushered in to the next room, given a shower cap, no change of clothes, and onto a trolley. Saw the anaesthetist and his nurse. All checked out OK. His wife is my opthalmologist. I don’t know what he gave me but I have no memory of seeing her or the surgery but waking up, cover over my eye and for some reason I took a lot of selfies. Husband collected me, back into the apartment. Rested up and finally ate something and slept until the next morning when we needed to go back to the Day Surgery for check and drops. Then off home! Yay. Thank goodness for sunglasses (as recommended) because EVERYTHING was bright.

Wednesday 11 March 2020.

Despite having a successful outcome on Monday, for this day trip I was anxious. Maybe my mind is remembering what surgeries are about. Nevertheless with a confidence boost chat to my GP and a wee bit of valium on board, we went. This time the only place my husband could ‘hang out’ was at Westfield Parramatta as I was going home the same day. On arrival, only 2 days post the first surgery, the protocol was already ramped up thanks to COVID. More questions on arrival and a temperature check. Settled down to wait “after the drops in the eyes” and then BOOM..OK, what is that? Oh. A Fire Alarm and no it’s not a practice. Evacuate the building.

Down some 3 flights of stairs, in single file, I admit I started to remember what 9/11 people had done only SO much worse. Outside on the street, we were guided away from the building and waited. The firies came. In an engine and we waited. I was pre-op and whilst the anaesthetists was already there, his wife, my surgeon, arrived just as we were all coming onto the driveway near the Ferry Terminal. So, all we could do was wait. Eventually, thanks to my phone I texted my husband from a concrete set of steps where I sat and we waited. Probably about 45 minutes. Then, all clear. A faulty something or other and we traipsed up the stairs again. Lift was out for a time. The wait was not too bad and I was called in, and this time, saw my surgeon and even “saw some of the coloured lights” as she was inserting the lens. Wow I said. She said “no talking”. So I didn’t. No silly selfies, husband got me and off back up the M1 we went. The next day checks were at rooms closer to our house.

Updates on my eyes. As of December 2020. I see very well for distance and no longer need glasses for driving. Yay. I use a much weaker script in glasses for reading. At the shops I use a $2 plastic pair with 2 vision. I have had a recent check and despite some issues that annoyed me as I already have itchy eyes at times my opthalmologist says all is looking good and these should last me 10 to 15 years. Grateful too that she bulkbilled for these surgeries.

COVID19  GETS SERIOUS. 

On the weekend after my two surgeries above, there were a number of changes to how we here in Australia, and in our state, would now lead our lives. The Prime Minister, used Sunday 15th March to announce a raft of new rules on how we would live and interact day to day and why. He was often flanked with the then Federal Health Person,  and in our state, Premier with her Health head honco, Minister for Health and Police.

It began very seriously from Monday 16 March.

I am using some calendar reminders here!

  • I know that I needed to have both food supplies in for us and I admit it, toilet paper was a high priority.
  • I think I went, as carefully as I could, probably wearing a mask and gloves – whatever we had here at the time – to local supermarkets
  • I could not always get what I sought nor what we wanted
  • I remember feelings of insecurity in me that I may not be able to cook all the meals – for us and the freezer – to have on hand.
  • I know I felt the weight of responsibility

Meanwhile my husband was negotiating seeing his GP and going through medication changes and it was not easy. In fact, it was tough. Even though he could talk to the GP on the phone, some things are far better managed in person.

Our eldest granddaughter has come to stay indefinitely with her other grandparents who also live on the Coast as she has an autoimmune condition so did not want to be at her Mum’s. Mum is a teacher and going to school at that point each day was a risk that she, and her youngest had to take. It got a bit worrying. She popped up to see us…and for a much needed hug…just because she needed to as did we to see her.

Of course, we know now that schools did an amazing job of being flexible and eventually on-line learning worked..hard as it was…and teachers need congratulating along with their leaders.

So we did OK really I guess. I found it hard initially that my practice of going out each day for a coffee was curtailed but I found alternative solutions at home with a strong coffee and my ISObaking  took off!!

Dear Miss Five. 

Our youngest granddaughter, born five years ago at almost the end of March spent her fifth birthday….having her broken arm re-set. It was one of those small accidents but when it’s a little person it is always hard. Staying with her Dad, along with her siblings, when it happened, she was driven to the local public hospital where, as our son said, they could not have been kinder. Her Mum met up with them there. They stabilised her arm, she came back to her Dad’s to open the presents from us and share a facetime even though it was pretty hard…and then next morning, her actual birthday, she went back in to find the nurses had remembered her birthday and she was treated very well indeed. She was fine, and is fine. And as her Dad told her, you just wanted to be the same as me when I was four. True!

April 2020.

We became accustomed to daily updates on COVID numbers of cases in our state and country. NSW was not doing well. Sadly it was where older people lived such as in Nursing Homes that things went downhill rapidly. Each day seemed to bring worse news and added restrictions. Already we knew there would be no Royal Easter Show. Definitely no-one going anywhere on the roads except for essential reasons: work, medical or supermarket.

I find change hard but did my best with this one because we had to do the right thing. Even going for a casual drive to nowhere..or the beach was BANNED and police could pull you up to ask where you were going.

I did immerse myself in busy stuff for my mind, like blogging, art, craft and cooking. I had my cooking/baking mojo back. In general too I was able to source ingredients and do my best to cook for us to have a meal stash in the freezer. Toilet paper was OK. We celebrated Miss 8’s birthday via facetime. I was able to attend some ancillary medical appointments in person. That was a relief…my feet needed it.

Eventually too, my hairdresser was back in a very limited way when they got the OK to do so and my usual 4 weekly hair cut had blown out to 8 weeks but I lasted and I was very relieved to have my back to normal look.

And then on a Friday at the end of the month…oh, there were no ANZAC days services or ceremonies anywhere either…I got slight sore throat and a mild temperature so rang the COVID hotline and my GP and both said, report to local COVID test centre. It was in local hospital grounds 5 minutes away. Not much of a wait. Test was OK. Mask on from the get go….and back home to self isolate. I got my test Friday afternoon and result in wee hours of Sunday morning.

COVID COLLAGE.

And that is that.

2020. Part One of Three.

Denyse.

Did you read it all? Wow. Thank you.

Joining here with Leanne and friends for what I guess will be the last Lovin Life Linky in 2020.

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Share Your Snaps #6 #WHNCD. 30/51#LifeThisWeek. 60/2020.

Share Your Snaps #6 #WHNCD. 30/51#LifeThisWeek. 60/2020.

Devoting today’s Share Your Snaps to: World Head and Neck Cancer Day 2020. It’s today.

Sharing the stories is part of what I am able to do here on the blog and in other social media but they are not all “my” stories. Some of course, belong to others.

The photos here cover a range of people who have been given a head and neck cancer diagnosis. Some may have had surgery, others radiation and chemo. Some a mix of all. I had surgery only.

 

Head and Neck cancer not well-known as a cancer, even by G.P.s and some specialists. The work of Beyond Five continues to offer up to date information for patients, families, carers and professionals. My work as a Community Ambassador is to share awareness of the role of Beyond Five.

Today: WHNCD,  I pay tribute to the head and neck cancer community around me and further afield.

I admit I did my first year of HNC (as it’s also known) alone until I was invited to be part of the Central Coast Head and Neck Cancer Support Group.

 

  • Sharing the stories…in pictures and some words, this World Head and Neck Cancer Day.

 

  • Women of Courage Who Are Head & Neck Cancer Survivors Shared Their Stories Here:
  • Maureen Jensen from New Zealand. Story Here.
  • Tara Flannery from Australia. Story Here.
  • Julie McCrossin from Australia. Story Here.

 

  • May there be greater funding for research into HNC AND supportive grants to Beyond Five so that more information can be shared via the website, webinars and “in real life” events if COVID ever lets that happen again.

 

  • Last week’s post was more detailed about head and neck cancer and its signs and more. In the coming weeks, as of today, Julie McCrossin AM and professional leaders in the field relating to head and neck cancer will be sharing on-line here. This on-line event replaces the Forum to be held last June which was cancelled due to COVID.

 

  • I am particularly grateful to be part of a New Zealand-based Head and Neck Cancer Support Group on Facebook. Started a while back, it is a friendly, reassuring place to be to ask some questions, find some support and to know you ‘are not the only one’ with head and neck cancer…even if it is still pretty rare. Find the group here. You will need to answer some questions first before acceptance.

 

  • To you, my blogging community, I say thank you over and over for your interest and support in this ‘hnc’ thing of mine from when I was diagnosed. I am incredibly grateful to be well…but also to be well-supported here. The link to my Head and Neck cancer posts is here. I am told this has been useful for some patients and families to read. Makes me grateful to use my blog for this purpose too.

I still have another 2 years of cancer checks to go …the next is in September. I never take it for granted that my version of head and neck cancer has gone forever.

Denyse.

Link Up #199.

Life This Week. Link Up #199.

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Out & About: Head & Neck Charity Ball 12/51 #LifeThisWeek. 24/2020.

Out & About: Head & Neck Charity Ball 12/51 #LifeThisWeek. 24/2020.

Regular readers and followers know I was diagnosed with a head and neck cancer in May 2017. Posts are here.

Then, in 2018 I was invited to become a Community Ambassador for Beyond Five. More about that here.

In my role helping share awareness of head and neck cancer facts and more via social media, this blog and in person, I really find it satisfying to give back:

  • to offer my skills and experience as an educator
  • and to feel and stay connected with other patients and their families/carers with a head and neck cancer,
  • attending meetings on-line and off relating to head and neck cancer support
  • to be part of social network head and neck cancer groups
  • to assist professional teams including my professor, speciality nursing staff and allied health professionals by sharing my experience on-line and in person
  • a recent interview for a Beyond Five project on nutrition
  • and then this……

Attending The Head and Neck Charity Ball at Avoca Hosted by Four Amazing Junior Doctors on Saturday evening 7 March 2020.

 

Here is the post from Beyond Five: the organisation to benefit from all the fund raising from attendance and silent auctions:

Beyond Five

Last Saturday night Caitlin Frede, Grace Swain, James Shannon and Catherine Zil, a dedicated team of junior doctors working within Central Coast Health hosted a #HNC Charity Ball https://buff.ly/37Aiejn at the Avoca Surf House in NSW to help raise awareness of #HNC and funds to support Beyond Five.

Over 100 people attended including Caitlin’s family, who lost her father Peter Frede to #HNC in 2015, and healthcare professionals from the Central Coast Cancer Centre.

Caitlin shares the stark and moving story of her father here. Thank you Caitlin for sharing your perspective in this cancer which has cost your family the presence of a husband and father…and a wonderful human being….

Dinner guests listened to powerful speeches from Caitlyn and former patient, Central Coast resident and Beyond Five Community Ambassador, Denyse Whelan who talked about her treatment for #HNC. Dr Puma Sundaresan, Radiation Oncologist at Western Sydney Health and Beyond Five Director also spoke about the need to raise awareness of #HNC and the importance of early detection.

Thank you to everyone who supported this fabulous event, helping to raise over $4,000 for Beyond Five. We are incredibly grateful!

My social media recount of the evening. 

A glorious evening at Avoca beach hosted by a group of junior doctors currently working on Central Coast to raise funds for @beyondfiveorg

As a head and neck cancer patient I know information shared helped me.

This is why I am privileged to be a Community Ambassador for @beyondfiveorg

Tonight I shared part of my story with over hundred guests many of whom were in

health medical dental allied health fields.

My thoughts during and after this event.

  • How fortunate we were as a group to be able to come together as this preceded the coronavirus restrictions, even though at this time, everyone was become familiar with what would be our future without handshakes and hugs. I was so honoured to be asked to speak about my head and neck cancer experience and meeting with Caitlin for coffee as part of her planning I was even more impressed with her initiative of that of her colleagues. They are working on the NSW Central Coast as part of their medical training.

 

  • Lisa Shailer, pictured above, is the Head and Neck (and Lung) Cancer Nurse who oversees new and on-going patients at Central Coast Cancer Centre at Gosford Hospital. She, along withe some head and neck cancer patients, started the Central Coast Head and Neck Cancer Support Group. Lisa is the person who ‘found me’ via my article on-line with local MP Emma McBride and invited me to attend the inaugural Soup for the Soul event at Gosford in July 2018. Since then I have been an active member of the group, in my role as an Ambassador for Beyond Five.

 

  • Dr Puma Sundaresan and her husband attended the event and whilst Puma represented the board of Beyond Five, she was there for sentimental reasons as she was a radiation oncologist on the Central Coast before taking up her current roles in Sydney. She spoke about the fact that the rise of head and neck cancers in younger people is becoming greater and there is a connection with HPV. She outlined too, that the Central Coast has a high rate of head and neck cancer cases relating in many cases to smoking and drinking.

 

  • For me it was an evening where I felt privileged to be amongst people who cared about head and neck cancer and getting the messages out there. One person came up to me and told me she is a dentist in the practice where I attend and where, along with my dentist, I first was told we were looking for cancer. What is was we did not know, but I am very grateful she showed support as does her workplace.

 

The future is bright. 

Yes I said that! We are, at the time of writing, in a pandemic state thanks to coronavirus or COVID-19 of course. I know there are going to be more restrictions imposed on many of us soon, For some, travellers and others, some cannot even get home. But I know, with the air of care, professionalism, hope and generosity I witnessed on this evening with the focus on helping others with head and neck cancer support, we have excellent people in our health professions. These times ahead are going to test them. However, if they can remain true to themselves using the skills, talents and more I was privileged to witness the future will be bright.

Notes on the fundraising experience.

These next months are going to see no gatherings for meetings and fundraisers for any cause.

Head and Neck cancer charity Beyond Five usually hosts a Soup for the Soul Fundraiser in July.

Whilst we do not know what that month will bring for getting together we may assume, like the Head and Neck Patient and Family Forum now moved from June to October, there may be flexibility in fundraising.

Maybe like my last two years, a virtual Soup For the Soul!

Recent update from the Head and Neck Charity Ball is that $4.400 was deposited into Beyond Five’s account. Yay.

Lastly….

What a beautiful scene from this event place at Avoca Beach N.S.W.

Take time to notice nature is always calming…and for  many of us in uncertain times, this can help.

Go gently and stay well everyone.

Denyse.

Link Up #181.

Life This Week. Link Up #181.

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* 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!

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*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.

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Share Your Snaps #6. 30/51*. #LifeThisWeek. 81/2019.

Share Your Snaps #6. 30/51*. #LifeThisWeek. 81/2019.

*The World Head & Neck Cancer Day and Soup For the Soul Version 2019.

Every 5 weeks here, there is a photo-based post called “Share Your Snaps.” I sometimes need to add words…that’s me. This time around I am letting the photos tell the story of World Head and Neck Cancer Day and Beyond Five’s Fundraiser: Soup for the Soul.

July 2019.

July has been chosen internationally (since 2015 I believe) to have one date noted as “World Head and Neck Cancer Day” 27.7.19. Like most ‘events’ health-wise, this one has an origin in the U.S. and the colours for Head and Neck cancer internationally are maroon (burgundy) and cream. In Australia those who follow Queensland in State of Origin would be impressed. Moving on.

The only charity devoted to Head and Neck cancer awareness in Australia is Beyond Five. Regular readers will know as a head and neck cancer patient I was keen to help share information about this little-known cancer and late in 2018 I was invited to become a volunteer Ambassador. I have written more here.

How did this July go?

I held a virtual Soup for the Soul event which raised $355. $385 as of time of publication! Thank you all.

My Soup for the Soul

I promoted Soup for the Soul via social media and there was also a ‘real event’ at the Central Coast Cancer Centre: hosted by the centre and the head and neck support group with donations of soup, rolls, the space in which to hold the event, prizes we got as donations for a raffle and my tiny cupcakes were sold. There were quite a few of our group there and here we are. FYI, in this photo there are 7 of us with head and neck cancer.

Some snaps from the day.

Beyond Five Information Sharing.

Promotion of WHNCD and Soup for The Soul via My Local M.P.

Last year, the Federal M.P. for Dobell, our area, Emma McBride kindly came to our place to meet with me to hear more about head and neck cancer and to support Soup for the Soul.

July 2018.

From time to time, I have kept Emma apprised on my progress, and recently wrote to her about this year’s event. She was able to meet with me, on the ACTUAL World Head and Neck Cancer Day to both offer her support and then share via social media. Emma and I also discussed the importance of carers and she is now the shadow minister for carers and mental health. Thank you Emma and also Jacqui for organising this!

July 2019.

What Next?

I admit I need a little break from all things head and neck cancer but then again, how I would do that when it is part of me, I am not sure!!

I am making a walk each day my focus and I am getting back to noticing nature and of course, the dressing with purpose and going for a coffee EVERY day remains essential to my wellbeing.

How do you go looking after yourself after an intense time of busy-ness?

Denyse.

 

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!

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Head & Neck Cancer. June Updates & WHNCDay 2019. 64/2019.

Head & Neck Cancer. June Updates & WHNCday 2019. 64/2019.

It would be remiss of me not to do an update in June….yes it would!

Having a CT ‘Surveillance’ Scan.

Following my 2 year (and every 3 month) cancer check my Professor determined it was now time for a ‘baseline CT scan’ of head, neck and chest. Ok. OK! It is a funny old thing, this cancer business until you “know” what the results are. There were no visible signs anything would be found…but…

I went. I was a bit nervous. I was finished in 20 minutes. Then I waited for a day, then another. Until I sent an email: already knowing my surgeon had a huge week but hoping he had a result. He did, I was told on the phone by his lovely practice manager: “ALL CLEAR”. Yay.

That week I also visited my dentist – the person who I convinced to remove the bridge & teeth in April 2017 where cancer was eventually found. He was able to check out all that had happened in the past 9 months and clean my remaining 8 teeth. I have an amazing team caring for me.

The First Week In June 2019.

This week marked the ten years since Professor Chris O’Brien, Head and Neck Cancer Surgeon, died from brain tumours. His legacy is so many people who trained and worked with him at R.P.A. and now at Chris O’Brien Lifehouse. His widow Gail O’Brien said recently that without Chris getting cancer he would not have understood the need for cancer patients to be cared for nor treated as well without his vision for a ‘one stop cancer care’ place. He knew that a specialist hospital -comprehensive cancer centre – would happen but he did not know of course that its obvious name would be his in the title.

On Monday 3 June I attended Lifehouse to hear the ‘stories’ of working with, knowing and loving the man called Chris O’Brien. This was a presentation about his legacy in head and neck cancer and as a patient with #hnc as its shorthand name is on twitter, I learned from those who have treated me and who paid tribute to Chris. In fact my surgeon’s final words of his talk were “there’s a little bit of Chris in everyone’s role”.

Later when I got to say hello again to Gail and to thank her for the work of Chris O’Brien, I said even at my most scared – one day after being told I had cancer – when I walked into Chris O’Brien Lifehouse I felt different. It was not a ‘hospital’ as I knew, it was full of interesting places and spaces and caring people. I felt safe and cared for. And still do. Each time I walk in, I look up at the various images of Chris and others and I am very grateful.

Being An Ambassador For Head & Neck Cancer Awareness with Beyond Five.

In June it’s time to ramp up the Head and Neck cancer awareness as we lead into the last week of July 2019 where World Head and Neck Cancer Day is marked with programs, conferences and more on 27 July 2019.

The colours for Head and Neck cancer world-wide are Maroon/Burgundy and Cream.

 

My #HNC & #B5 Lanyard with my card & Ambassador badge

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.

World Head and Neck Cancer Day: 27 July 2019.

Soup For the Soul Event at Gosford: Central Coast Cancer Centre. Tuesday 23 July 2019.

In June I will be working with the local Head and Neck Cancer Support Group at Gosford to prepare for our Soup For the Soul and Head and Neck Cancer Information and Awareness Day on Tuesday 23 July 2019 at Central Coast Cancer Centre. A year ago I went to the first occasion and met people who also had head and neck cancer and were carers and professionals too. It was the first time I had met anyone else with head and neck cancer. Now the people there have become friends of mine.

From 2018 World Head and Neck Cancer Day & Soup For the Soul at Gosford:

 

This post is to also support others around the world who will be part of the World Head and Neck Cancer Day in 2019.

Do support the charities which help with research and awareness of Head and Neck cancer.

In my case, the link in the story about my virtual Soup for the Soul event will take you directly to donate to Beyond Five’s continuing awareness updates and programs to help those affected by Head and Neck cancers.

Thanks for following my Head and Neck cancer stories. This is the link to where all of my Head and Neck cancer posts are as well as those that have been published elsewhere.

Warmest wishes

Denyse.

 

 

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