Monday 6th July 2020

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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Share Your Snaps #3. 15/51. #LifeThisWeek. A Love Story. 30/2020.

Share Your Snaps #3. 15/51. #LifeThisWeek. A Love Story. 30/2020.

In July 2018 I met the members of the Central Coast Head and Neck Cancer Support Group at the first Soup for the Soul event in Gosford Hospital’s Central Coast Cancer Centre. That day was the first time I met other people who had been diagnosed with a head and neck cancer. I was “still” toothless but was made very welcome. Interesting isn’t it that it took me a year to get out to meet anyone at all in a setting like this. My surgeries and treatments for my head and neck cancer were all in Sydney. I had no idea of what support there was where I was now living until that month, close to World Head and Neck Cancer Day 2018, when I was invited by Lisa Shailer the Nurse who oversees and assists all head and neck (and lung)cancer patients who receive diagnosis and treatments at the centre to attend. I met many of the members, and it was good to share our stories where we could.

The couple I will now introduce, with what I have named  ‘A Love  Story’ are Stuart and Jill.

Stuart shares the story now after some questions for this post. Thank you Stuart and Jill for sharing.

We are Stuart and Jillian (Jill) Garfatth.  We have been  living in the Central Coast town of Toukley for the last 6 1/2 years.

 

How did head and neck cancer affect your lives?

The cancer had a very significant effect on both of us, of course, more so Jill than I.   It has completely changed our outlook on our lives, we realise how incredibly lucky we are to be living in Australia,  particularly the Central coast, because the treatment Jill was able to have has left us in no doubt that it is the best in the Western world, both medically and the people who cared for Jill in her time of need, of course the financial cost was virtually nil, which was a great help in eliminating that particular stressful component of treatment. We both have a vastly different outlook on life, we do things that we normally would not do,  get out and about, travel internationally much more than we normally do, and enjoy every minute of it!

 

 

How long have you both been members of the Central Coast Head and Neck Cancer group?

We have been members of the Central Coast Head and Neck Cancer group since August 2015, and it has benefited both of us a great deal, particularly the knowledge that we are not alone is a major factor of our membership of the group.

 

 

Do you have any particular stories to tell from your involvement there?

We don’t have any particular stories as such, but we always look forward to the meetings, gaining and sharing information about a great range of subject matter pertaining to Jill’s and everybody’s treatment and experiences. Of particular note presentations by people who are at the ‘coalface’ of research and treatments, they just reinforce the value of on-going research regarding advances in cancer treatment, very heartening indeed!

 

 

There is a story about your motorbike, and why it is special, can you share more?

Yes, there’s a bit of a story about my Sterling Autocycle motorbike. In April 2016, my twin brother rang me and suggested I get on the internet and have a look at a rather unique motorcycle, built to order by The Black Douglas Motorcycle Co. in their workshop in Melzo, just south of Milan, Italy. The company is registered in the U.K. but each bike is hand made, taking about 200 hours per bike, and no two are exactly alike, given differences in overall colour and applied finishes, like pinstriping, and other materials used in their construction.
I told my brother that I thought they were rather nice, and certainly ‘different’ to what is being mass produced by the very large manufacturers, but I could not see me buying one as they were a little ‘pricey’, and I didn’t see a need for me to have one. He replied, “Well, I’m buying two, one with a 230cc motor, and the other with a 125cc motor, and you can have the smaller one”.
“WHAT!, you’re paying for both?!,  I was stunned to put it lightly. Well, after getting over the surprise, I contacted the company founder, Fabio Cardoni, and set the wheels in motion to import the first two Sterlings into Australia.

Can you share more please…I know there IS more! 

As my brother is not on the internet, everything fell to me about liaising with all the relevant Authorities, both in Australia and Italy, little did I know what was to come!. Our greatest stroke of luck came about when I contacted the owner of Ballina Motorcycles, Joe Fisher, who has over 44 years experience in the industry,  he proved to be fundamental to the successful outcome, that took 3 years to bear fruit, and have our bikes registered to ride in Australia, his tenacity and unflagging determination, despite some very serious setbacks, was incredible, but for his efforts, our two bikes would never have been imported and registered here, his honesty and dedication to the task was incredible to see, we cannot thank him enough.

There is a down side to the whole saga though.  Our bikes landed  Australia June, 2016, and after a minor delay, we took delivery and put them into Joe Fishers hands, and he started what turned out to be a 2 year process of getting them legal for road use, and boy, what a story that was! Then towards the end of November 2016, the company ceased trading, it was bankrupted by some new owners who thought they could do better than its founder, Fabio Cardoni, so our two Sterlings are now the only two in Australia, and ever will be.

 

 

Please tell more about how the ribbon for Head and Neck Cancer (named for Jill) came about.

The head and neck cancer ribbon I have put on at the front of each side of the petrol tank came about when I soon realised that when the bike was out in public, it attracted a lot of attention,  many many photographs  taken, many questions are asked,  I was even videoed  once whilst riding, so this got me thinking.  I had the ribbon professionally designed and applied, so that whenever an image of the bike was taken, and published, particularly on the internet, the public profile and awareness of head and neck cancer could grow, which it has, as the image has been seen in the U.K., Europe, North America and Canada.

 

 

What else would you both like to add to this love story?

I had Jill’s name applied within the ribbon for two reasons. One, the bike is unique and very pleasing to the eye, and two, so is Jill!

As my bike is the only one on this planet with such unique livery, and Jill is the only Jill also on this planet, I felt it fitting that I should pay my homage to Her by naming my Sterling after her, and ever it will be.

 

Thank you Stuart and Jill for sharing the story of love, as I named it. I know you won’t argue there. I trust that there are many more days to come, sharing the bike, its story and the head and neck cancer ribbon…once we get through the challenges our country is in now thanks to the COVID19 pandemic.

This was a Share Your Snaps with a difference, and I am glad I saved the photos and story till Easter. We all need a lift in spirits I think and with this story I know I was smiling as I compiled it.

To Love…and Stuart and Jill.

 

Denyse.

In writing here,  partly in my role as a Community Ambassador for Beyond Five, the organisation which helps raise awareness of head and neck cancer which is Australia’s 7th highest, I acknowledge Stuart and Jill are also raising awareness with their bike and meeting attendance at the Central Coast Head and Neck Cancer Support Group. Coming up in July, it’s unlikely there will be a Soup for The Soul at the Cancer Centre as in 2018-2019 – sorry Stuart, who enjoys serving the soups with Jill and sampling them too, so it’s vital we continue as individuals and groups to share the knowledge we have about our head and neck cancer stories.

 

 

Life This Week. #184.

Life This Week. Link Up #184.

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.

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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.

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

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

* Feel free to go with the prompt for the week to add your ‘take’ on the prompt. Or not.

* Please do stay to comment on my post as I always reply and it’s a bloggy thing to do!

* Check out what others are up to: Leave a comment on a few posts, because we all love our comments, right!

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

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

* THANK you for linking up today!

Next Week’s weekly optional prompt is: 13/51 . Chocolate.  30.3.2020.

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Share Your Snaps #2. 10/51. #LifeThisWeek. 20/2020.

Share Your Snaps #2. 10/51. #LifeThisWeek. 20/2020.

Welcome to the second in the series that comes along every 5th week here. “Sharing Your Snaps” as an optional prompt grew from a need to have some less-wordy posts and more photos to share! This one though is, like me, wordy.

Now: before you start….I am absent from the blog for now. As this is published I am either still on my way to Sydney: specifically Parramatta Eye Hospital and Day Surgery to have the first of my two cataracts removed OR in the place itself. My dear husband is the kind chauffeur, picker-upper from after surgery and the one charged with caring for me on our overnight stay. No idea of how I will be but know I am a good recoverer…because after Tuesday, we have a night at home, then back down the M1 on Wednesday for the left eye to be done. We go home that evening as my opthalmologist/ surgeon is happy for me to present to the Morriset rooms for check up on Thursday. This surgery has been coming for a couple of years and now, sigh, it is necessary. I will be back here when I can and am ready to do so in a semblance of being able to read still as my eyes will be a bit sore I am told. 

When I was in Sydney, specifically the suburb of Camperdown, I decided it might be a good idea to do a “day of cancer check” post.

“Sharing the Snaps and The Words!”

Missenden Road (just off the Great Western Hwy) is where the main arm of this major Sydney teaching Public Hospital is and it’s called R.P.A. or Royal Prince Alfred Hospital. On one side of the road too, is Sydney University with its residential colleges and more. “MY” hospital, as regular readers know is called Chris O’Brien Lifehouse, and is just 6 years old. The building replaced an older part of the R.P.A. complex I believe. It is opposite a part of R.P.A., St Andrew’s Residential College and just down the inner road,  is Gloucester House, where my 96 year old Dad had a ‘melanoma’ removed…not a melanoma so good news!

Here’s my day: Tuesday 3 March 2020.

Left home around 2 hours prior to appointment. Drove myself. This has been the case since early 2018 for me. Happy to do so.

The trip is via the M1 or Motorway 1 which is a dual lane highway with speed limits of up to 110 kmh but two sections which are 80 kmh because of continued road works. I usually do not need a loo stop these days…go me…and wait till here for that.

I generally enjoy the drive via the M2 then over the Harbour Bridge (been driving over it since 1967 as a licence holder)  and along the Western Distributor until I turn left at the Sydney Fish Markets and up via Pyrmont Bridge Road and across the highway into Missenden Road. When we first visited Chris O’Brien Lifehouse, my husband drove (I was way too caught up with my day-old cancer diagnosis) and then as we came down for surgeries and then checks after surgeries he came too. We stayed twice in apartments shown here, and at 6.00. a.m. meandered up Missenden Road in winter-morning light for one surgery and daylight for another.

And, then here’s why I am here! Chris O’Brien Lifehouse is named for the visionary person, who died far too young, Professor Chris O’Brien. It was his vision, and drive which eventually saw the Federal Govt and State come together to fund this place. He did not see it happen. His wife, Gail has been there for every part of the journey. Every. Day.

Do come in. Take care first and welcome. This is why I love this place….it does not have the cold feel of any hospital I have visited. Music is heard, people chatting, creating art and just taking time to rest, look around and wonder. I still do.

Here’s my favourite sweet treat and great coffee. People watching too. Some medical and surgical people catching up. Patients brought down by a friend or family from their room and those of course, who are maybe waiting and wondering. It IS a cancer hospital I need to remember…..I have only just started being comfortable with enjoying this time for a snack since October 2018..teeth were in by then.

Oh, is that the time? Almost 1 p.m. Time for taking myself to the Clinic on Level 2.

I do prepare for a bit of a wait but last week it was around 10 minutes. Glad to have a 1 p.m. appointment booked always so I have a good trip home.

Kisses, hugs, smiles and gifts of little cakes and brownies. Oh, yes, and a cancer check up too. I can never forget that. I know once I tried to vanish it as a thought and my Prof said “Denyse I am a cancer doctor”. Yes. I know. After a great (but short as I try not to over step my time) catch up, proper examination by viewing and feeling – the glands around my neck and chest, he declared “see you in 6 months”. Wow. So good to hear. Delighted. Will be having a CT scan before that visit. Photos, please! Time for an updated one or two.

My Professor is the Chairman of Beyond Five, the organisation where I am a head and neck cancer community Ambassador and he and his surgical nurse assistant Cate were delighted to hear of the event on Saturday 7 March held on the Central Coast where I will speak and all funds will go to Beyond Five.

The drive home was good. In fact I was home without a stop in under 2 hours. I found it a challenge (but I was good) not to use my phone at all in the car as NSW is now having random cameras catching drivers (and I heard passengers..cannot confirm) using their phones. 5 points and a heavy fine. My phone, once I started its audiobook, sits inside the console where no-one can see it.

I hope you found My Day of interest. I hope to be back to comment when and if I can…and to read but I shall have to ‘see’ how I go.

Denyse.

Link Up #179.

Life This Week. Link Up #179.

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

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Changes For The Good: Head & Neck Cancer & Me: Eating. 15/2020.

Changes For The Good: Head & Neck Cancer & Me: Eating. 15/2020.

Next week, I have been asked to be a patient-participant in a video being made for Beyond Five on nutrition. As many of you know I have been a Community Ambassador for Beyond Five – the Face of Head and Neck Cancer – since late 2018.

Announcement of My Ambassador Role.

I was enthusiastic to take part in this video initially…then had a small crisis of confidence (for the want of a better expression) and began doubting my relevance. I was, and still am, firmly encouraged by both the CEO of Beyond Five and my husband that I do have that quality! Thank you.

There is a back-story to this and I am going to share it briefly before making my points about the GOOD that has come for me in terms of changes from a diagnosis of Head and Neck Cancer.

Denyse and eating…before Head and Neck Cancer. 

From early days in my teens and twenties I would self-soothe with lollies, chocolate and whilst I did not over-eat significantly, I did establish a pattern of eating for comfort. None of this was ever really a secret (certainly I did not have any kind of eating disorder, for which I am grateful) but it still was something I would not admit to doing (except me) and then over time, it probably began the life-time (decades rather than all of my life!) of eating for reasons other than hunger or to nourish myself. The bigger picture (pun intended) was first written about here and then, as I became more accountable for my past behaviours around eating, I updated here. Blogging is so good for this!

The above posts show that I acknowledged my eating and what it was doing to my appearance, general well-being and health. Yet, the ‘same amount of weight’ that would come off over a few decades (3 times at least) would also go back on.

What was I missing?

  1. Probably other ways in which to see food.
  2. Or maybe the maturity (even though I was mature in years) to see through the hard yards.
  3. But maybe none of this.
  4. I think as a serial dieter/eater/non exerciser and one who ate emotionally I just did what I did.

A Breakthrough of Sorts: Not Great Though.

From 2013 onwards, I acknowledge how serious my weight had become as a result of eating and less movement when my GP challenged me to try to reduced weight or she would be sending me for a Glucose Tolerance Test as I was becoming pre-Diabetic 2 in my test results. I managed to do as asked and my weight reduced enough to see progress. Yay.

Then from 2014, my anxiety ramped up (we were about to sell our house to pay out the mortgage as I needed to stop work at almost 65), and Irritable Bowel Syndrome re-entered my life after a few decades absence. From then I found I literally could not eat as I did before without the effects of mostly explosive diarrhoea. Yes. Unpleasant and socially restrictive.

Over the time of our move to the Central Coast, and some of my emotionally challenging times to adapt to life’s transitions, this continued to be a pattern and without ‘any real effort’ my weight slowly reduced.

I did, however, raise with my doctors, that I might have had cancer. I did look pretty gaunt. No, they said. OK. I did feel anxious almost all the time.

My Diagnosis of a Rare Oral Cancer: 17 May 2017, and How That Changed Me.

My story is told here on this page: Head and Neck Cancer.

This is a little reminder for me of what I went through back then. I was told on 18 May 2017 that where my cancer was located (upper gums and under top lip) I would require a compete removal of the top half of my mouth. THAT took a while for me to get over, in terms of the shock. Then I went home with my husband and thoughts raced in my mind. One was, if this is making me stressed, then how can I self-soothe or calm if my well-ingrained practices had been to eat something sweet, salty, crunchy or whatever. It was a rhetorical question. I had 7 weeks to wait for surgery and I was so anxious, eating was not high on my list.

Early Days And Getting Hangry! 

Following my 11 hour surgery, 3 days in ICU I was transferred to a room at Chris O’Brien Lifehouse and added to the regime of drips was, via my naso-gastric tube,  some nutrition. The liquid kind. It was, for me, yucky but in one way that was my aversion to milk-type drinks. However, as each feed slowly dripped into my very, very empty stomach I had to change my attitude towards this feed. I started by telling myself “it is healing me and nourishing me” as I get well. I know I was going well as each time my professional team dropped by, they told me so. BUT…even when I finally got to try to oh so good nectar of WATER orally, I began to feel hangry (cranky when hungry!). By Day 8 I was allowed some clear fluids. Hallelujah. Broth, jelly, and then over time until my day of departure: Day 10 a few more soft food choices. No teeth, except for 8 bottom ones AND a very stitch-filled mouth!

And then I Came Home. Lots of Eating Ahead? Maybe.

Before I left hospital I was visited by the dietitian who was incredibly helpful with guidelines for me, and offers of samples of food-in-a-bottle and that she would follow up my progress at home via phone calls. I remember her words “now, you need to put on weight”. WHAT? No-one ever had told me that. It was a complete revolution in terms of instruction. I now know that yes, head and neck cancer patients need to keep weight on but no-one has ever really revealed why. Note to self: ask at next visit to my team.

My return to eating caused a great deal of distress in me because diarrhoea came back with fury as my emptied stomach  rebelled with a strong anti-biotic inside. I did not, as I thought I had to do, follow the dietitian’s advice but that of my local GP who had already seen me through diagnosis and now post-operatively. His words were “eat what you are up to and can keep you going.” Drink water as much as you can. With that, I did share the news with the dietitian when she called and I appreciated her services on offer but has to do this ‘my way.’

What I Did Then. 

My mouth did restrict my intake of food but I learned to adapt and seek foods that were both nourishing and pleasurable in texture/ taste. Mind you, my reconstructed mouth was quite a barrier to a variety of tastes but it was important for me psychologically to eat normal food. But also the words from the dietitian echoed and to “add value to food”. This meant a tiny lemon cupcake would have some dairy added to it: yoghurt, custard, ice cream. I became well-versed in the inner conversations re “fun to eat but also eat to heal”.

None of this food preparation or meal decisions came really easily and it required patience on my behalf as I was normally the meal-maker and my right leg’s giving up of its fibula, skin and flesh for my mouth, meant I could not stand for long…nor did I have much energy. But, my patient husband (and then full-time carer including grocery shopper) would help me as he could. I might not have been able to bite into some vegemite toast but I could savour the flavour and add some slices of avocado for nourishment. There are posts here, and  here about eating in those days.

Before I became affected by the anti-biotic, this was what I ‘could’ eat. Soft, slippery and full fat foods.

And Over Time, I Made Changes as My Mouth Healed. 

From July 2017 until August 2018 I had only 8 teeth in my mouth. It is amazing however, that humans can adapt! Mind you, I also add, THIS human had to become creative in her eating as boredom set in quickly and a sense of resentment about what head and neck cancer brought to my now lifestyle. I did make the effort to feel more grateful and appreciative of all that had been done for me. There were 3 more surgeries too, inside my mouth, to prepare it for an upper prosthesis of teeth.

Creativity included:

  • value adding to sweet foods like small cakes which were easy to swallow AND made me feel less deprived
  • making up some small plates of foods that would have me feeling like I was not missing out
  • inventing dishes for me: crustless pies, taco-less tacos
  • finding more and more ways with mince. Thank you to my A/Prof who advised mince would be a good food and my iron levels did slightly improve
  • allowing foods like small pieces of milk chocolate to melt on my tongue
  • iceblocks and paddlepops eaten with a spoon – my mouth did and still does love cold

Weight Was Good  Healthy…. Then I Got Teeth!

Notice my crossing out of good.

This is a judgement I have made like many over many years about eating. I now see, and have learned to see that my weight can be HEALTHY even if the numbers have increased. I was incredibly excited to get the upper prosthesis attached permanently to the abutments in my jaw. I remember fantasising about crunching food, chewing food and more. Well….that is what it was… a fantasy.

A reconstructed mouth is a blessing alright in terms of appearance and function for sure. But it does not do all that my mouth could do, so again, I have needed to adapt.

Adaptation took some tearful routes where my disappointment in not being able to eat something was palpable. I know I tried various foods including crunchy chips and they were/are a huge disappointment as they sting inside my newly re-skinned mouth and I could not swallow them. Onward to crunching into a piece of apple. Actually no. But I can eat small pieces or even better if I grate it.

I could add many more adaptations and they will form a new post in the future.

What I want to write about now is my weight, self-images and stories that can be untrue.

Changes in Me For the Good. Health and Head and Neck Cancer.

From August 2018 until February 2019 my weight from the rather steady figure of around 69kg increased by around 5 kg. I could feel it but I also LOVED feeling well and having more food choices. I was somewhat disappointed for a bit that some of my clothes were more snug…then I said to myself “that was because you could not eat much nor as well as you can now”. It was to be an on-going inner conversation (of self-judgement) for a while.

When I realised what I looked like (one aspect of me) was HEALTHY I began to accept that this was a good thing.

  • In fact, I knew it was. I did however let the old weight-centred thoughts creep back.
  • I started to believe I might get back to the much more heavy person I had been in 2013-14.
  • I was scared but the clothes and the scales did not lie. I stayed around the same.
  • For many months, and now it’s a year. It has not happened.
  • In fact, I am a little less on the scales than a year ago.
  • I use my clothes now as a measure of how I am going.
  • Very steadily and the scales are used rarely but they are telling me what I feel it true. So, no more stories!

My Appearance on the Beyond Five Video on Nutrition.

I now look forward to helping present the patient’s perspective on what I have learned personally about nutrition and how to nourish my soul as well as my stomach and mouth. I can honestly say I eat for both pleasure and health yet in a different way from any other time in my life.

This is why I am grateful for my diagnosis of head and neck cancer.

I have learned to sooth myself through meditation, talking with my husband, using my journal, art and going out for coffee. This is one important strategy in my every day self care. In fact, the more I self care, the less I even think of a need to soothe with food. How grateful I am for that.

Each time I go out, or plan a meal or snack at home I often have to re-think from the old familiar paths of pre- head and neck cancer.

  • Quantities are very different. That’s fine.
  • I make mall dishes I can freeze.
  • I carry small packs of biscuits in my bag to have with a coffee.
  • I know too that I can manage certain soft sweet foods with my coffee and will often ask for a bag to take half home.
  • I have still not ventured out for a ‘real meal’ but neither of us are that interested.
  • We had had lunch with family and entertained here.
  • I am less self-conscious of my eating these days.
  • I do always have a small bottle of water nearby.

 

I Am Going Well! 

This is my stock standard answer when I am asked how I am. It’s true. I am indeed. I am glad to have seen the good that head and neck cancer has been for me and my eating. This is me on Thursday 20 February enjoying being back near the water after attending the Central Coast Head and Neck Cancer Group Meeting..and catching a treat of a small iced cupcake with a coffee on the way home.

There will be some updates after the making of this video but already, just writing out what was making me feel less than my normal confident has done me good.

Onward!

Denyse.

 

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My Latest Head & Neck Cancer News.120/2019.

My Latest Head & Neck Cancer News.120/2019.

For those who are new to the blog and my head and neck cancer story, all posts can be found here. 

As I reach the end of the year, it’s timely to do an update of how it is to be living with the results of head and neck cancer.

Specifically for me, the cancer was found inside my mouth: top gums and under the top lip.

It was named squamous cell carcinoma at first diagnosis after the initial biopsy but after my first surgery here, the results from the massive pathology testing done then according to my head and neck cancer surgeon was a form of verrucous squamous cell carcinoma. I do not pretend to understand my version of head and neck cancer. It IS oral cancer but for ease of others finding my blog I file it under head and neck cancer.

I am told by my professor that my version of this cancer is rare. The fact that head and neck cancer like mine (no Human Papilloma Virus/HPV cause) and no risk factors like smoking or drinking alcohol makes me “rare of rare”. Professor Jonathan Clark AM 2019. Sigh. Ok, I am glad it’s rare I guess but there is a puzzlement always about the how and why of my version of this cancer that I discuss with my dentist (who ordered to original biopsy after I had him take the bridge and teeth out…so I have learned to accept the no reason as best as I can.

Always grateful for my head & neck cancer surgeon

Supporting Others Helps Me Too.

My Blog.

This place (right here!) provided me, initially, with a way to tell my head and neck cancer story. I am glad I still keep going with the updates. Now as I hear, it can also be a place that others who are newly diagnosed, family members, friends and professionals can pop in, using the top of the page link to see all posts.

My Social Media Presence.

Twitter.

I like to talk (!) and connect so when I want to do this, without face to face catch ups (we are all over the world!) then it’s to social media I go. I have an active twitter account https://twitter.com/DenyseWhelan1 where I follow head and neck cancer patients, carers and professionals. Some of those include Beyond Five where I am an Ambassador, my fellow Ambassadors Julie McCrossin and Marty Doyle. The New Zealand based Facebook group, found here, has two of its admins Maureen Jensen and Tammy Von Keisenberg who are on twitter.

Facebook.

My blog’s facebook page https://www.facebook.com/denysewhelanblogs/ is where I do my main connecting these days and also use this profile in the Head and Neck Cancer Support Aotearoa. If you have head and neck cancer, or a family member or friend does, this group with over 500 members is an active and supportive place to share, read and find information. Meeting up with Fergus was a delight and getting to know Tara too. These people are the first who have also been diagnosed with a head and neck cancer in similar place to mine and we all have Chris O’Brien Lifehouse as our cancer centre.

Groups.

The local Head and Neck Cancer group for me (Central Coast NSW)  has a social media presence with a public facebook page found here: 

Beyond Five: found here, also lists meeting days and updates from groups around Australia. This is the link to the general page.

Most months I attend the Central Coast group meetings and next year will continue the practice. The group is open to all, and each 3rd Thursday of the month from 10 – noon we can be found at Erina’s Cancer Council rooms, within Erina Fair. Gary Mar is the group’s facilitator.

Beyond Five Ambassador.

I am delighted to announce I am continuing in this role for 2020. I have really enjoyed learning how to be the Ambassador that works for me and for Beyond Five and this is going well. It was in this role that I supported Soup for the Soul Fundraiser back in July for World Head and Neck Cancer with  my own (on-line!) and the event held at Cancer Centre Gosford Hospital in July. The group is grateful for the Head and Neck Cancer Patient Co-ordinator Nurse Lisa Shailer for her insights and lead and to Twynette Dickinson from the Cancer Council for her interest and presence.

Eating

I planned my eating in advance of going to the Christmas Lunch. It’s the best way for me.

  • I have found eating some foods fine. These include breakfast cereals with milk, some cracker biscuits with cheese, a small cake, grapes, mango and some meals which include mashed potato, meat (like cutlet or steak) and some tomatoes which can add some liquid to the food. It is a challenge for me to eat outside the home so I have accepted that unless it is say at my daughter’s house, I will be fine with a cup of coffee, a cake or something to dip into the coffee.

At Head & Neck Cancer Support Group Christmas Lunch this was my manageable and enjoyable choice to eat while socialing.

 

  • The foods that can be ordered out take me far too long to eat and my mouth gets sore inside. Whilst I have upper teeth they are tight inside my mouth and up against the gums and the biting and chewing that is enough for safe swallowing takes time. I get tired. The food gets cold. I tried to eat a meal out once and was refused a bag to take the rest home so another reason for no eating out is it is very expensive to waste money on food I cannot eat in two stages.

 

  • My main meals at home are like a bread & butter plate size. Or I use a regular plate and eat half one meal, cover it, and refrigerate it and eat the rest the next day. Because I have found this is a good strategy it means at least once a week I am eating some red meat (iron) that I love and some accompaniments and also sharing this meal with my husband. Most meals though, are ones I have made in bulk and are in small containers for me to eat after defrosting.

  • Occasionally I will try a salad as caesar salad is a favourite but again, I take so long and my mouth gets sore, so I make it in two halves. I cannot eat corn on the cob, tomatoes were lovely but they are affecting my mouth by stinging now (skin is very sensitive) and an apple…well, how long do you have? I cannot bite into it and the skin is too challenging, so if I give an apple a go, I may just grate it.

 

  • I have never been a spicy food person and would be hard pressed to have anything like that now or anything too hot. Cold is better in my mouth than hot.

 

  • Inside my mouth the skin is of different ages – some was added in 2017 and the remainder in 2018. My right thigh is the donor for my delicate areas between the gums and inside of lips. I have, as you would know, the flesh and skin from my right leg as my palate.

The wounds are where the bone (fibula) and skin/flesh were taken in July 2017

  • What is interesting is that because the top of my mouth is made from my leg (skin, flesh and bone) it acts like a legI am fortunate that the palate no longer grows hair.

 

  • However, I cannot taste nor feel any food in the top half of my mouth. IF I really want to savour a texture or taste, I need to put the food upside down in my mouth!

Appearance

Unless there is a reason to do so, I no longer mention to anyone new that I have had cancer. The reasons I did in my first years was about the way I looked. I certainly DID look different with no top teeth (upper prosthesis) and a mouth that was healing along with my leg. It was, for someone like me, a talking point or conversation started in 2017 and until I got my upper prosthesis in August 2018.

After that for a few months those I had met before were amazed to see me with teeth and smiling..even my head and neck surgeon (above) who remarked “Denyse you look fantastic…great work Suhas” when I’d sent him the email photo of me after Suhas (the prosthodontist) had fitted my upper prosthesis.

My top lip on the right hand side is pulled in (still) despite the months I spent with a stent trying to push it out. At least the stent did the work for me to have the upper prosthesis fitted. My top lip and under my nose is completely numb. It is very dry too and can itch. I have bought tube after tube of lip creams/balms/ointments to be told that there are some nerves in there that no longer work and so I just need to keep things in better condition for me to feel more comfortable instead of this constant tightness. The top lip appearance changes completely when I smile. So, I smile as much as I can!!

Nothing is as it seems. Sometimes.

I would be less than honest if I did not make a comment about this. I have found as time passes, that with little visible differences now in me, there is no real interest in my head and neck cancer. This is in my family and friend relationships too. I have pondered this and I believe once the novelty (strange word to select) has worn off this cancer diagnosis of mine  – it was very unusual – then people move on. In some ways I have but I also can never forget I have had cancer.

Each time my mouth moves one way or another, I feel the difference. No-one can see it of course, but I know it. When I can not stretch out my right leg or even my right foot then I am reminded of the sacrifice one part of my body made for another.

In the lead up to my third year of living with the diagnosis of a head and neck cancer (May 2020) I do take time to count my blessings and express gratitude (of course) but there is something quite profound about having a part of your body placed in another part of your body so you can function and live as well as possible.

Celebrating my 70th Birthday: with my husband who has been by my side throughout almost 49 years of marriage, but even more in the years since I was diagnosed with HNC.

I do get on with my life (as a now 70 year old!!) of course but have to say, despite the head and neck cancer existence for me, that I am noticing I can be more distracted and interested in hobbies such as my art and designs, getting out to meet people, going to the shops..ahem..for coffee of course. NOT always clothes shopping as my husband seems to think.

Am I grateful?

Yes I am.

However, I will continue to be monitored and tested for a return of cancer until at least 5 years has elapsed from diagnosis. So, I will be looking at May 2022.

Appointments scheduled.

Ask any cancer patient and they will likely say that once the more frequent appointments spread out (for the good news reasons like mine) there is an initial feeling of what now? I did have that this year once I got to May and was told my future appointments would be 4 monthly. So I am back to the Prof early March 2020 at Chris O’Brien Lifehouse. My prosthodontist who saw me for my…40th appointment late November does not need me to return till mid March at Westmead. I am never quite sure of what the next appointments will entail. I trust I will continue with my path of wellness for which I am very grateful.

Head and Neck Cancer Patient Forum. 2020

On Friday June 12 in 2020 at the Garvan Institute I will be a patient who is interviewed about my experiences with head and neck cancer. It is open to patients , carers, family and more. The details are here. Costs are free to attend for some and a small fee for others. The link is here and I will be updating no doubt in 2020.

About my word of year 2019: Integrate.

When I chose this word at the end of 2018 it was after a conversation with my husband where he pointed out that maybe my cancer could be less important in my daily life. Mmm. Easy to say from a non-cancer person but much harder to do for me. Then. However, when I had the word engraved on the bracelet I have worn daily since 1 January 2019, on the back it says “HNC & Me” meaning that over time I hoped to grow to the point of head and neck cancer being a part of me but not the main part. I can now announce, I have noticed this for myself in the past few months so like all things, it happened in its own time.

Thank You.

The blog is my place for recording what I can share with the wider world about what it is like to have head and neck cancer. I now know some newly diagnosed patients and families have been assisted by reading the blog posts which I keep in a special page on my home page – right hand side. When I give someone my business card, the website is there and my information as an Ambassador for Beyond Five; head and neck cancer awareness on-line.

Top: L: Beyond Five Ambassador R: My Prosthodontist & Nurse: Westmead Bottom: L: Professor Jonathan Clark AM R: Sr Cate Froggatt

 

Earlier this year, I was published here too if you are interested. Life, Death Whatever take submissions from around the globe and a book will be coming in 2020

Thank you to my readers. This was a long-ish update!

Denyse.

Joining each Wednesday with Sue and Leanne here for Mid Life Share the Love Linky.

On Thursdays I link here for Lovin Life with Leanne and friends and on Fridays, it’s Open Slather here with Alicia.

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

 

 

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Share Your Snaps.#8. 40/51.#LifeThisWeek.101/2019.

Share Your Snaps.#8. 40/51.#LifeThisWeek.101/2019.

 

Today’s post is dedicated to a good friend “I never met IRL”. Pam was a friend first from the art community on-line about 5 years ago, particularly the one called Daisy Yellow Art. I soon found over the past few years that Pam and I connected over quite a bit of shared history. She was an Aussie, living in the N.S.W. Central West. But she grew up near where I went to Teacher’s College in Balmain in the late 1960s. Pam was just a few years older than me but succumbed last week to a combination of serious conditions. She always cared for me and my health during cancer and I was able to share some of my art with her when she became more unwell. Her daughter shared the recent, sad news in a very small facebook group formed to support Pam through what was to be her last illness. I have her permission to share Pam’s image. Her funeral will be held later this week, and too far for me to attend, I will spend sometime by the water we both loved, reflecting on gratitude and friendship. Sending my love to her family and friends.

 

 

Mandalas for Pam.

 

 

The rest of the past month or so has been recorded on a few occasions.

 

North Kellyville P.S. Foundation Year Book Week. Proud Mum post.

 

When I need a time-out and want to feel closer to nature, it’s here I go.

 

 

The message for us all, is to live today as best we can. I know that Pam would want that for us all too.
Sending all my love to her family right now. These are very tough times.

Love is all we need. Take care, everyone.

Remembering Pam. Tiger Mother.

 

 

Have you shared your snaps this week?

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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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.

 

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Next week’s link up: 31/51 Gratitude 5/8/19

 

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