Saturday 16th January 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.

You are invited to the Inlinkz link party!

Click here to enter


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

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

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

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

 

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

2017.

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

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

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

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

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

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

2018.

January: continue as for December.

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

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

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

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

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

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

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

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

2019.

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

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

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

End May: CT scan showed “all clear”

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

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

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

 

2020.

January: continuing own care and progress at home.

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

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

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

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

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

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

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

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

2020
3.3.20 cancer check.

17 total to date.

Next due: September 2020.

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

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

2018  23.2.18 (post surgery #3) 1.3.18  7.3.18  15.3.18

22.3.18 28.3.18 12.4.18  28.5.18 (post surgery #4) 31.5.18

12.6.18  15.6.18  18.6.18  25.6.1  3.7.18   10.7.18   16.7.18

23.7.18   6.8.18   9.8.18

21.8.18: Upper Prosthesis Issued

28.8.18  10.9.18   25.9.18 8.10.18 (lower denture prep)  25.10.18

5.11.18  15.11.18  19.11.18  27.11.18   11.12.18

2019  21.1.19 (unscrewed UP)  4.3.19

13.5.19  16.7.19  5.8.19

17.9.19    25.11.19

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

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

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

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

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

Denyse.

23 May 2020.

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

 

 

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Self-Care Stories. #1. 7/51 #LifeThisWeek. 13/2020.

Self-Care Stories. #1. 7/51 #LifeThisWeek. 13/2020.

 

Welcome to the first in the series for 2020.

This optional prompt pops up every 7 weeks or so.

Today here’s mine!

Before kicking off: I have made two changes to my daily routine which is helping me:

One is to consider what I am grateful for each day. I tend to think about something or someone through the day and by even thinking that way I notice a change within. I blogged about it here. I am doing an instagram post each day here: @denysewhelan_blogs and no longer have my account private. I still have @denysewhelan going and no longer private...look at me taking a risk

Two is I am listening to Calm meditation app twice a day. One session, the Daily Calm, before I get up from bed and last thing at night a session of whatever I need at the moment. I have just listened to 10 or so day of “relationship with self.”. Calm is free initially and then you can decided to buy. I got a lifetime price as a bargain in 2018 and am never sick of it. Sleep stories are ace too on nights when I am less than sleep-ready.

What Have I Been Doing?

  1. remembering to follow my daily routine: get up, have breakfast, get dressed and go somewhere for a coffee….come home, blog, read, relax, cook, sleep…
  2. this was, for the most part, pretty well kept.
  3. however and it may have been something that affected others too, I became more anxious than usual when we had extremes of threats:
  • Bushfires
  • More fires
  • High temperatures
  • Continued fires
  • And then it rained.
  • Rainfall was excessive in some places and caused:
  • Flooding
  • Electricity to be cut
  • And NONE of this directly affected me.
  • Mmmmmm.
  • so I was most fortunate to have an in-house counsellor (aka my husband) but also that my previous years of learning how to self-care via means at my disposal actually helped..a great deal.
  • but being an avid follower of social media there were signs that my emotional health was being impacted when I stayed on news and updates for fires/disaster sites for long periods.
  • I realised even before I was “told” by my husband to stop. That was a good self-care measure in itself.

 

Why Have I Needed to Do This?

  1. I know I thrive on being informed and also caring about and for others….BUT there has to be a limit placed.
  2. I do this now by asking myself “what is it I can do that will help this person/those people etc?” If there is nothing really, I do send out a message of empathy where it’s appropriate and I might even do this.
  3. The loving kindness messages are always a way for me to feel a greater connection with others.
  4. I recalled with some hyped and stressed memories of the 5 days of the 2015 East Coast Low when we first moved to the Central Coast and I needed to talk a few of those memories through.
  5. Once I had done that I also knew I am in (and still am in) a much better headspace some 5 years later thanks to all the work I have done to achieve greater emotional health.

Loving Kindness (Metta) can be said silently for yourself, for another or for many. These words above are just one group.

How Do I Integrate This Into My Life?

  1. I continue to follow my routine as much as possible allowing for days (there were a couple!) where to go out of the house meant to be on unsafe roads in flooding rains so I stayed home
  2. I managed to fill in those particular days with little and varied projects of mine.
  3. I automatically come to my art desk when I need to zone out and concentrate on ONE thing and that worked well. In fact it has been something I have done before as well.
  4. I love the variety of activities I now have at my disposal and made use of exploring more of the media too.
  5. My husband was well-occupied with his in-house hobbies and some cabinet making in the garage so with no power lost, we really did well!

 

Afterwards. Onwards.

  1. Self-care is on-going and it can change in its focus for me, depending on how I am.
  2. This week (in fact today!) I am at Westmead seeing my prosthodontist for an update on my upper mouth. I used to get quite stressed about these visits “what will he see that I cannot” and last week I said “STOP”.
  3. I had been living in fear that had no justification.
  4. It was shifting the relaxed mood in our house (and relationship) to tense because I was experiencing some mouth pain (it IS always there, it just seemed worse)
  5. I changed how I approached the pain. I stopped focussing on it by not mentioning it. I also took panadol as instructed.
  6. Self-care is pretty well an on-going matter and recently on Bev Aisbett’s Facebook page (Living with “IT” Anxiety) she posted this, with permission to share:

Recently I took this selfie looking back to  Norah Head Lighthouse in the background, the huge seas reaching the shore…to remind me of how well I am, grateful for all in my life and how far I have come. More to come too, of course!

How is your self-care going?

What do you notice if you are not keeping up your self-care practices?

I look forward to catching up with the comments after I am back from Westmead!

Denyse.

Link Up 176.

Link Up #176. Life This Week.

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, or on your sidebar.

*Posts deemed by me, the owner of the blog and the link-up, to be unsuitable for my audience will be deleted without notice.

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Self-Care Stories #6. 42/51#LifeThisWeek. 105/2019.

Self-Care Stories #6. 42/51#LifeThisWeek. 105/2019.

In the past of this series I have written about daily routines, helpful strategies and learning about self-care for me. I have referenced people who have helped me in my quest. Some of my posts can be found here, here and here.

This week’s is different.

Read on to see why.

Where Do I Start?

Not at the beginning in this case! I start with what I think was/is for me a big issue in terms of self-care.

Believing the stories I am telling myself even when there is no evidence nor reason.

What Do I Mean By That?

I’ve been making big progress in terms of my on-going wellness physically and emotionally, particularly related to head and neck cancer, and in every day life practices ….or so I thought until last week.

On Wednesday last week I had the worst headache I had ever experienced since getting migraines waaay back in my 30s and 40s. I woke with it and it was unrelenting. I ended up, most unusually for me, vomiting once. I did not want to eat, felt nauseous, nothing appealed and I spent a miserable night tossing and turning because “I was making up so many stories about what I HAD DONE to cause this to MYSELF”

On Thursday it has settled more but my mind continued to play that above “rubbish” in my head. In fact, my husband and a friend said “maybe you have a virus, or even the flu”. No, not me. I couldn’t accept that. Again….”what did I do to get this?”

On Friday, bit better but not right 100%, another example of my story-telling which came to mind. When I felt I needed to use a toilet quickly because of symptoms of IBS. I “blamed” my inability to manage my emotions and spoke to myself harshly. I won’t repeat the words.

but by the end of that Friday I was so, so ready to

SHUT

THAT

VOICE

UP

and then this is what happened.

  • I felt the feelings and did not like them but I did know why they stayed.
  • I had felt ashamed to admit my health vulnerabilities.
  • I used to think I did have something wrong (and that is true) but until I had a diagnosis from my GP or someone with a medical qualification I hid behind my stress.
  • It has been like this for me probably since I was young. No-one (as I see it) in the 1950s and 1960s brought their kids up to speak of emotions and be able to be heard. In fact, I don’t think our generation did a good job either. We may have been more understanding but I guess “we wanted a happy, not crying kid” too.
  • I made an appointment to see my GP next week. I then examined how my physical symptoms were and they matched either a virus or a form of the flu. At the time of writing they are still there but I am managing them better.
  • I chose to treat myself with compassion.
  • I told myself I had not CAUSED anything to happen. I relaxed and took care of myself with food and water and kind inner conversation.
  • But wait, there is more.
  • You see, the old old issue for me of shame and embarrassment around my bowel habits continued to be one where I took myself to task often. Add to this a rectocele I also need to manage and I started to ‘hate needing to go to the toilet or find one wherever I was’ and I blamed me.
  • I knew though that I needed to change that darned voice and SOON.
  • I did.
  • I wrote about it. In my on-line journal. It also helped to read it aloud to my husband.
  • It relieved my stress to such a level by that Friday night and into Saturday (time of writing) I have been:

A very pleasant person to be and to live with.

What a significant self-care story this turned out to be.

But of course, you just can’t turn a belief on its head like that…because our minds like to play with us.

IF I had not already done a lot of self-education about self-compassion, having courage and learning from Brene Brown, Kristin Neff and My Calm Meditation AND all the courses I have done, including seeing a psychologist ….and having a trained counsellor husband who has, ahem, talked me down from quite few heights of emotion…then I could not have done this.

Owning our story can be hard but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy—the experiences that make us the most vulnerable. Only when we are brave enough to explore the darkness will we discover the infinite power of our light.”

Brené Brown, The Gifts of Imperfection

Self-compassion involves acting the same way towards yourself when you are having a difficult time, fail, or notice something you don’t like about yourself. Instead of just ignoring your pain with a “stiff upper lip” mentality, you stop to tell yourself “this is really difficult right now,” how can I comfort and care for myself in this moment?

Kristin Neff, Self-Compassion.

So, I thank you for reading this far. I have felt a bit vulnerable in owning up to what was keeping me stressed in some areas of my physical health but I have done it.

Two images with quotes which have helped me grow as a person are shared here:

Denyse.

P.S. The story does not stop here. No. Unless I continue to practise and recognise my self-care and compassion, then my negative/default mind (it’s how all of our brains operate) will revert pretty darned smart. So, I will return to this book, where I began completing the pages. Sometimes it IS hard to look at yourself with a reality check. But I know this helps me. Onward….and away from old thoughts, memories of shame and embarrassment.

This is the book I use.

 

You can link up something old or new, just come on in. * Please add just ONE post each week! * Feel free to go with the prompt for the week to add your ‘take’ on the prompt. Or not. * Please do stay to comment on my post as I always reply and it’s a bloggy thing to do! * Check out what others are up to by leaving a comment because we all love our comments, right! * Add a link back to this blog in your post somewhere. I don’t have a ‘button’ so a link in text is fine! *Posts deemed by me, the owner of the blog and the link-up, to be unsuitable for my audience will be deleted without notice. * THANK you for linking up today!

Next Week’s optional prompt is: 43/51 Your Favourite Book As a Child 28/10/19

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Gratitude. 31/51. #LifeThisWeek. 83/2019.

Gratitude. 31/51. #LifeThisWeek. 83/2019.

If you’ve read here for a while, then you will know I have posted about gratitude a few times, there are two here and here.

I truly have to remember gratitude more…especially at times which begin to ensnare themselves into my default negative. So, without further ado is more….

in photos and some words about:

 

G R A T I T U D E. 

  1. spaces in nature to go for contemplation
  2. family: our daughter  & her 3 adult kids
  3. us with our daughter (HB to her for tomorrow)
  4. my health professionals keeping me well after head and neck cancer
  5. double shot latte, small: daily treat (and need!)
  6. wed since Jan 1971. love is all we need.
  7. mandalas & my creative arts
  8. family: our son’s 4 kids.
  9. the ocean. always.

 

More about gratitude:

Family. Nothing better. Daughter’s youngest in this one!

 

Two years of amazing, though challenging, recovery from head and neck cancer.

 

 

I know when I need to go here more…and that starts this week!

 

 

Recently I found this small book at Big W and it has bite-sized very useful sections to read and consider. This from ‘gratitude’

I’ve suffered a great many catastrophes in my life. Most of them never happened. Mark Twain.

The mind is like a torch, shining on either the sorrows or the joys, the problems or solutions in our life. Fortunately we hold the  torch and get to choose where to shine it. Gratitude is not just a state of being. It’s a habit. And like any habit, it requires training. When we train our mind to dwell in gratitude regularly we will also dwell in peace.

 

I do need to express gratitude more regularly but this was a start last week.

 

 

This is my home screen locked. I may not remember to write 3 things I am grateful for but it is a reminder to be grateful.

 

 

Message on the sand from me to me and others who pass by.

 

 

28 women have shared or are yet to share their stories! How grateful I am for them. Thank you all.

 

Many of us who are bloggers and on social media are always up for a catch-up in real life when possible and on the weekend I was delighted to do this for the third time with the amazing and friendly Sanch who blogs here. Thank you for a great morning!

 

Do you practise gratitude?

How do you do this?

Share in comments if you are up for it!

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!

Next week’s link up: 32/51 What Makes You Laugh? 12/8/19

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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.

Copyright © 2019 denysewhelan.com.au – All rights reserved.

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Two Years Ago: Before My Cancer Was Diagnosed. Pt 4. 46/2019.

Two Years Ago: Before My Cancer Was Diagnosed. Pt 4. 46/2019.

I am heading for ‘crunch time’ now. It is almost the 2 years since I heard the words over the telephone:

“Denyse, squamous cell carcinoma was found in your gums after further investigation by the pathologist”

In the last week of April 2017 I did something very courageous…for the Denyse I was back then.

I drove to Sydney to see my father.

My anxiety and fear of IBS episodes had so built up in my mind, that I could not even fathom this trip from the Central Coast, down the M1 to Dee Why. It bothered me big time that I could not but it made me so scared just thinking about it.

“The willingness to show up changes us, It makes us a little braver each time.”  Brene Brown.

 

Then as readers from earlier posts know, I HAD to find the courage and it was via this: exposure therapy which over time, has become my way of managing the hard things. This is discussed in a post here. And here in part two.

Remember this is not an advice post, merely my story. Wikipedia has also provided a quote.

Exposure therapy is a technique in behaviour therapy thought to help treat anxiety disorders. Exposure therapy involves exposing the target patient to the anxiety source or its context without the intention to cause any danger. Doing so is thought to help them overcome their anxiety or distress.

From my post here:

My psychologist brought up exposure therapy as part of her helping me learn what I had to do next after getting myself more confident about some social things I had previously resisted. These included driving to Sydney and going to the Dentist. However, I was resistant to learning how it could help me conquer my fear about IBS and getting ‘caught’ short.

She outlined a list of 1 -10 and then asked me to tell her hardest (the 10 end) and easiest (the 1 end) activities I would be prepared to try and then to do them before the next session and report back. Exposure therapy continued to be resisted by me even though I had the knowledge, and a counselling-trained husband encouraging me. What to do? Nothing was improving, so I did some of the challenges at the easier end:

  • go out in the car about 15 minutes and not go to the toilet just to check I am ok,
  • go out again and not take an immodium in my bag just in case
  • go out for a longer time and not race home because it is too hard not to be sure about my IBS.

What does any of this have to do with my remembering the time two years ago?

It is a reminder for me, via the words and pictures, of how long it took for me to get my cancer diagnosis AND how hard it was for me emotionally to manage much of my day-to-day life BEFORE cancer came along.

What I see now, is how I did garner the strength and the courage, over time, via the help of so many:

  • People who had been through their own life challenges and as a result trained in psychology and mindfulness – these people are part of my “inner team” now as I did so much work with them on-line, via CD and streaming their podcasts and videos. I mention them here.
  • My husband, on-site caring and most knowledgeable person, who was not only training in counselling via a degree prior to me becoming very unwell but already had managed his own health issues over decades to the point of self-responsibility for his well-being and care.
  • My GPs and a psychologist who enabled me to see I “had this within me” but also gave me guidance and some appropriate medication to make my path a smoother one.
  • My friends on-line via blogging and other social media who supported my blog and the link ups, made connections via following and keeping me engaged at times I may not have wanted to but did anyway
  • Family and friends who understood this was a big transition I was going through – probably more than I would admit to – from 2014 to early 2017 and with added worries/issues I could not discuss, that worsened my reactions and ill-health for some time.

Thank you for your interest as I have found compiling this helpful for me to judge how far I have come!

There will be a final one in this series…sometime in early May 2019.

Denyse.

Joining  With Leanne on Thursday for Lovin Life link up here

AND with Alicia on Fridays for Open Slather here.

Thank you all for your link ups.

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Grateful For These Women. #IWD2019. 25/2019.

Grateful For These Women. #IWD2019. 25/2019.

It happened last Friday: 8 March 2019.

International Women’s Day.

I have always known about green and purple being the colours for women but not exactly why: this might help you:

Internationally, purple is a colour for symbolizing women. Historically, the combination of purplegreen and white to symbolize women’s equality originated from the Women’s Social and Political Union in the U.K. in 1908. Purple signifies justice and dignity. Green symbolizes hope.
Grateful for these Women:
My tribute via Instagram and Facebook, now here is for the women who have helped shape me to be the woman I am today. I also include those who love and support me, particularly since my head and neck cancer. So, from those who went before me, and those who have been born – to me and then to my children, I salute you all. The women I am so grateful to have in my life. And as I said too, those who are not here and there are many more, are remembered with love in my heart.

Top: Mum, Her Sister My Aunty Poppy, Their Mum, My Nanny. Mid: Me with youngest GD on her BIRTHday, My daughter with her eldest & second eldest and her youngest. Bottom: Me held by paternal Gran, on left is her Mum (Nana) and my Mum on right. Three daughters of our son! With my daughter.

When is International Women’s Day?
International Women’s Day (IWD) is celebrated around the world on the 8th of March.

What is International Women’s Day?
International Women’s Day is celebrated in many countries around the world. It is a day when all women are recognised for their achievements. International Women’s Day was first born out of labour movements at the turn of the twentieth century in North America and across Europe.

Since those early days, International Women’s Day has grown in prominence and reach, touching women in every corner of the world. The growing international women’s movement has helped make International Women’s Day a central point for action, to build support for women’s rights and their full participation in the economy, politics, community and in everyday life.

History of International Women’s Day
In 1910, Clara Zetkin, the leader of the Women’s Office for the Social Democratic Party in Germany tabled the idea of an International Women’s Day at the second International Conference of Working Women in Copenhagen. The proposal received unanimous support from over one hundred women representing 17 countries.

The very first International Women’s Day was held the following year on March 19th. Meetings and protests were held across Europe, with the largest street demonstration attracting 30,000 women. In 1913, IWD was moved to March 8th and has been held on this day ever since.


International Women’s Day in Australia

Australia’s first International Women’s Day was held in 1928 in Sydney. Organised by the Militant Women’s
Movement, women called for equal pay for equal work, an 8 hour working day for shop girls and paid leave. The next
year the event spread to Brisbane. In 1931, annual marches were launched in both Sydney and Melbourne and both marches continue to be held today.

Since these early days, International Women’s Day has continued to grow. It is a day to celebrate women’s achievements and both highlight and work to address barriers that continue to perpetuate gender inequality.


International Women’s Day today

International Women’s Day has become a time to reflect on progress, to call for change and to celebrate the courage and determination of the women who changed history, and those who will advance gender equality into the future. International Women’s Day is an occasion to review how far women have come in their struggle for equality, peace and development. It is also an opportunity to unite, network and mobilise for meaningful change.

About International Women’s Day

Those who cared for me (and still do!) when I was diagnosed with head and neck cancer in May 2017.

Top: Cate who has been at every surgery and is the one I see regularly on my check-ups Then: Justine who is a specialist H&N cancer nurse who helped me before the July surgery and in my recovery time at home. Then: Stef who was the oral surgeon with did my gum biopsy & was the person who sensitively told me on Wed 17 May ’17, “squamous cell cancer is in the gums”. Last: never least: Ofelia who has been by my side whether I am laughing or crying at my prosthodontist appointments.

My life, since head and neck cancer, has been enhanced by my social life. Even when it looked like it might be a bit hard, I managed to get out as much as possible – and still do, so I can meet up with people I know via blogging and on-line.

I am grateful always for connections…and made a collage of these and some more friends I have met with.

My tribute to the women on International Women’s Day 2019, #IWD2019.

What did you do on International Women’s Day?

I am grateful for my blog’s followers & to join in Australian-based link ups each Monday, Tuesday, and on Wednesdays, Thursdays and Fridays

 

As I wrote last week on gratitude here, for #ztt is is an antidote to fear.

Thank you Min for #ZenTipsTuesday which I will link up for here.

Denyse.

On Wednesday I link here with Sue and Leanne for Midlife Share The Love.

Thursdays my link up to follow is Lovin Life with Leanne here.

And on Fridays here with Alicia for Open Slather.

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