Friday 30th October 2020

Two Years Ago. Head & Neck Cancer. October 2018. 85/2020.

Two Years Ago. Head & Neck Cancer.  October 2018. 85/2020.

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

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

Here I go:

October 2018.

 

Early October 2018 and I was off to Chris O’Brien Lifehouse with a LOT to smile about. I received the long-anticipated upper prosthesis of teeth on 21 August 2018 – some 14 months after surgery.

  • It was a cancer check day but also a chance to meet with Nadia from then Beyond Five – now Head & Neck Australia to discuss my prospective Ambassadorship as a volunteer.
  • Photo – top left. Then briefly caught up with then then Specialist Head and Neck Cancer Nurse (top right)  who had last seen me as a very raw new-to-head and neck cancer patient in July 2017. She was stoked! My cancer check went very well indeed (bottom left) with smiles and congratulations all-round.
  • How good it must be for the Professor (Jonathan Clark AM) and his Nurse Surgical Assistant and Consultant (Cate) to see a patient post surgeries…yes, all 4 they were part of…and my much anticipated S M I L E.
  • Last photo is me with Gail O’Brien, the late Professor Chris O’Brien’s wife whose vision it was to have this wonderful comprehensive cancer centre built and to tell her how much I appreciated the work and vision of her late husband…he was a head and neck surgeon too and my surgeon trained with him.

 

 

School holidays in October 2018 saw two visits from our Sydney-based family.

  • Much appreciated as always.
  • We entertain casually for lunch with their favourite snacks and foods and much chatter is heard.
  • Often we go outside for a play even though our yard is very small.
  • On this occasion the four younger kids (left pic) took home a special pot with some items planted and some crystals along with a few old fave toys from our Sydney house…and their younger days.
  • With the older group there is often some reminiscing and music too, particularly as the older grandson is a DJ.
  • I felt so much more at ease now I had the teeth in my mouth. It still took quite a bit of getting used to for eating but it was much better than before!

 

 

I was interested in attending a Look Good Feel Better Cancer Patient Workshop and once my ‘teeth’ were in I happily took part in a local event.

  • I did get some good advice and took away a swag of amazing free products.
  • What left me feeling somewhat disappointed was the fact that my cancer is so rare and not known.
  • These workshops were pitched at breast cancer patients more than anyone.
  • Some needed help with using wigs and scarves, others with how chemotherapy had changed their skin/hair.
  • I guess I need(ed) to be more grateful because I was/am doing well.
  • I wonder as I write this if these activities have now been stopped because of COVID and that is a shame because it was psychologically very helpful to us to be ‘seen as a woman, not a patient.’

 

 

It was, and still is, important for my mental health to have something creative to do most days.

  • I liked the idea of holding a mindfulness colouring class at the local library. I did get to have it, but it took so much box-ticking, I left it as a one-off.
  • However, I know I enjoyed being ‘teacher’ again.
  • My months of making bookmarks for the charity The Big Hug Box were always enjoyable and I must have contributed well over 500.
  • They were individually constructed by me and sent in batches to Lisa for adding to the boxes.
  • In November 2018 I took part in a packing boxes day at her house and met other cancer patients.
  • One got me to design some mandalas for a colouring-card idea she had. I was pleased to share my creations.

 

 

 

About eating. And drinking. I remember pre-upper prosthesis having all kinds of thoughts about what foods I might try with teeth in my top gums.

  1. I admit now, 2 years on, that some of those foods were just not a success.
  2. You see, as it was explained to me by my lovely Nurse, Cate, my mouth has more inside it than a ‘normal mouth’ and it cannot do all that it did.
  3. My prosthodontist had added a partial denture of a tooth on each side to hook into my remaining natural teeth on the bottom and this helps hugely.
  4. Some meals I tried and could eat (and still do) are  above, even though the hot meals are likely to be over 2 nights.

 

 

Keeping up appearances…was very important.

  • This trend went right into 2019.
  • In 2020 I do this occasionally.
  • But in between treatments, visits to Sydney for cancer checks and more, dressing well and with purpose was/is very important.
  • More important than everything was I was finally able to (and definitely wanting to) meet up with friends again. Yay.

There it is. Snapshots to help me remember what life as a head and neck cancer patient was like in October 2018.

Denyse.

Linking up with Leanne (whose image appears in this post!)  here for Lovin Life Linky.

 

 

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Three Years Ago. Head & Neck Cancer. October 2017. 83/2020.

Three Years Ago. Head & Neck Cancer. October 2017. 83/2020.

For this week and the next 2 weeks each Wednesday I am posting a ‘review’ blog post mostly to remind ME of how far I have come in terms of the changes brought about in my life thanks to the diagnosis of head and neck cancer on 17 May 2017. The whole story is here. 

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

Here I go:

October 2017.

 

The way in which I recorded the times. My husband kindly took photos of me outside Chris O’Brien Lifehouse on the afternoon of our visit as a check-up in October 2017. It was the first time I had seen my head and neck surgeon since leaving hospital in July after the first major cancer removal and mouth reconstruction. Of course I brought cake! Cake is my appreciation gift to my medical and surgical professionals. What I see in ‘me’ is the way it was then. I had no way to smile and it was probably because of seeing photos like this that I finally went and brought properly fitted bras. Sigh. The photo of the drive back home over the Harbour Bridge is a great memory. One of relief too. However, glad I have this as we can no longer use iphones in cars without risk of huge fine.

 

 

 

Seriously I was gob-smacked at this image. WOW. My fibula, the shapes at the top, cut into 3 pieces and made into my new jaw by being attached with screws to under my cheekbone. The little dot-type images: one at the front, two on each side, five in all, are where the screws are embedded into my new jaw and which will, over time, hold the upper prosthesis I have now in place. This was so good to see however, as it showed just how clever my team is!

 

 

 

The first time I ventured down the M1 alone that October was for a very good reason. To meet up with my daughter and her two eldest daughters for morning tea at Hornsby Berkelouws. It is a favourite place to meet because it’s about an hour from our place and reasonably convenient for those who live in Sydney to meet up. I was still very new to what I might eat/drink but I managed a piccolo and a very small cake with icing. Lovely as always to see the family. I admit I was tired out. Pretty big deal only two + months since my big surgery.

 

 

 

Our daughter. Very proud of her. This lemon meringue pie – a firm family favourite – made ‘just for her’….to celebrate her completion of her Master of Education Teacher Librarianship. It’s pretty tough being a single mum to 4 and working generally full-time as a teacher and then teacher-librarian too. Not only that, she started a new school’s library. One book at a time. Many hundreds of times. Eventually to complete the last semester of the pretty gruelling regime to do a Masters on-line (and to keep her job) she took long service leave and “got the job done.” She and the four kids (3 are adults) joined her in the celebration of her achievement at Charles Sturt University Graduation Ceremony later in 2017.

 

 

 

In late October I decided I needed a ‘challenge’. A personal one. It seemed that I wanted to show off this new-to-me slimmer body and the enjoyment I was beginning to find in looking for clothes that actually fitted me. Of course, my weight loss was because 1. cancer and 2. I couldn’t eat properly but I was also not allowed to lose any more weight by my professional team. This instagram challenge took on a life of its own and over time I did this every.day. for many, many days as it helped me emotionally to see my improved look and demeanour despite the ravages of how my mouth had been reconstructed using part of my leg.

 

Glad to have shared this. I know long time readers may recall some of these images. Thanks for reading and commenting.

 

Denyse.

Joining Leanne and friends for Lovin Life Linky here. 

Joining here too: Esme’s Senior Salon link up.

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Healthy. 39/51. #LifeThisWeek. 78/2020.

Healthy. 39/51. #LifeThisWeek. 78/2020.

When I was blogging more frequently, health and mindfulness were a category for blog posts. These days, like many, my posts are limited to twice a week.

This is good for my health in some ways as I am not feeling too much pressure to perform, aka write posts, and can enjoy the writing of the two I do more.

About Me.

  • Being healthy is a relatively new idea for me…I was raised to be healthy and was…I am talking about lifestyle & choices
  • For many years I balanced my life …in a not so good way…with eating for comfort and doing less as I was quite worn out by life
  • I knew limited ways in which to care for myself because…as many do…I was too busy caring for others: at work, and in my family life.
  • I do much much better now in the self-care and health stakes as I have learned much in my years living following head and neck cancer.

Then I Was Diagnosed With Cancer.

Those who have followed me before and since this diagnosis know that I found out I had a head and neck cancer, specifically squamous cell carcinoma of the top gums (maxilla) and under the top lip. All about that, and many more posts outlining the years of surgeries and more are here: Head and Neck Cancer.

But Before Then.

My emotional health was at an all time low from 2013 into early 2017 for a number of reasons:

  • ageing and becoming somewhat disenchanted by some of its effects
  • retirement from all of my meaningful and paid work over this time
  • my weight was the highest it had been and with encouragement from my GP and my own determination, I lost some kilos over a year with greater awareness of why I ate, and ensuring I moved more
  • finishing up grandparent care at our house and actually being glad because I was finally tiring and becoming worn out by it
  • making a move from all I knew: Sydney, our family, friends….to the Central Coast
  • this move was one I thought I wanted (and still agree it was the right move) but my emotional health brought me down into spirals of anxiety and fear along with the dreaded Irritable Bowel Syndrome
  • the health professionals I saw then all said it was reactive depression and anxiety was part of the transitioning. Not a diagnosis of either. I do take a low dose anti-depressant now to help with IBS more than anything and getting off to sleep
  • I admit I am one of what is known as the “worried well”.

SO….in some ways I was not surprised that I had cancer diagnosed in May 2017 …I can see that others may have felt stress was a cause. That it is not a direct link, but from what I know about cancer, it is random.  Some people thought my immune system was down due to the appearance of my mouth. THAT,  was actually the beginning of cancer…but no-one thought that till April 2017 when I insister my dentist remove the bridge from my upper gums.

This quote sums cancer up. From an Australian surgeon:

Head and Neck Cancer Requires Frequent Checks.

From the diagnosis on May 18 2017, to the big reconstruction surgery on July 6 2017, through to further surgeries for skin grafts and checking inside my mouth, glands in neck area and many visits to the prosthodontist, I had:

  • post-surgery checks after a few days to a few weeks to see my head and neck surgeon and his surgical assistant, nurse specialist
  • three monthly checks for the first year
  • any time where I may have seen/felt an issue, such as additional skin forming, and my surgeon saw me within weeks
  • four monthly checks for the next year
  • weekly and fortnightly visits to the prosthodontist as he continued to work on the making of the upper prosthesis
  • then monthly to two monthly visits to him, until COVID. Last time I saw him was February 2020 and I am returning in mid October as he is now doing regular checks again
  • this year, the visits to Sydney’s Chris O’Brien Lifehouse were at 6 month intervals.
  • THEN, at my recent early September visit, after clear CT scans of my head, neck and chest, and after visual examination and more, I am now on:
  • a 12 month check up..so will not be back until September 2021.

“MY” Prof…as I call him, Professor Jonathan Clark AM recently became chair of a new program at Chris O’Brien Lifehouse and Sydney University where this grant will enable him and his team create software and 3D models for head and neck surgery on the spot. My surgery, over 3 years ago, meant a delay as my team here in Australia  and the software developers in Europe made the program for my surgery and the model for my  mouth which had to be flown in from Belgium. Here’s the announcement of the donation for the funding so this program goes ahead.

ALWAYS happy to have a photo….

How I Manage My Health Now.

Interestingly with greater ease, thanks to a limited ability to eat a lot and to a better attitude to moving more.

Photos tell that story too. It is a way of keeping myself accountable too.

However, I never feel that I am missing out either. I have a better understanding of my need to nourish this body and to also enjoy the treats when I can.

And Then I Had to Do These Things.

Have both of my eyes’ cataracts removed and lens replaced. This happened on the cusp of COVID restrictions and I was glad to be done. In Sydney, over 3 days. Then of course, I had recovery but my opthalmologist has rooms up here so visits for checks were OK. I was quite shocked that from one annual visit to the next, it was cataracts time. This turning 70 was not quite what I thought. Now 6 months on, I use readers of a lower strength and no glasses for driving. Love the clearer views everywhere.

Left Eye Cataract Done

After hiding FROM myself and my problems with rectal prolapse* and the ways in which it impacted my day to day life, in May 2020, I was forced to face the matter as I could no longer live in pretend land. I look at it this way though, in managing my recoveries – physical and emotional – from those years of head and neck cancer I could not face more investigations into what is wrong. But dear readers, there was a lot wrong. Google rectal prolapse and what it means. Let’s just say, I paid a small fortune for incontinence aids, and suffered a great deal from shame about this condition.

Grateful to be ‘out of’ another surgery.

Getting One of the Things* Above Fixed…and Added Complications. 

Again COVID changed a few things but from my GP’s referral to a colorectal surgeon who insisted on a colonoscopy “no cancer or polyps but def need rectal prolapse repair”…and then needed surgery I became resigned to what needed to be done. From early May to late July I waited for the  surgery called rectopexi. The surgeon did a great job, especially complicated by my inners where he also found (surprise) a hernia needing repair. This necessitated a horizontal incision AND, the best (not) news, a vertical incision. Meeting in an upside down T at the bottom of my abdomen. The surgery, has worked. He took the slack inner workings of my rectum and has stitched them to a bone low in my back. I have no prolapse and normal (for me) bowel movements for the….first time in perhaps a decade…and…

My recovery in hospital and at home was slow as expected but at my first post-op appointment he told me I was a star for recovering in exactly the way it was best. I liked that. Especially as I did not quite hit it off with him at my initial consult…I was scared.

Three weeks into post-surgery recovery I noticed a section of the upside T section of the wound was kind of not staying together. I showed my GP and he thought it would be OK. But take this anti-biotic and apply this cream…and let’s hope it resolves.

It did not.

Within 2 weeks of seeing my GP, I was ‘astonished to see and feel liquid forming over my nightie as I got up out of my chair. Eeek. Got an urgent appointment to the GP, who was ‘so sorry, Denyse’ but…It was called wound dehiscence and sometimes a wound will not stay together. My colorectal surgeon saw me the next day, and pronounced “can fix, back into hospital for wound debridement and we will put a VAC system on to help heal the wound over less time.”

Wound Debridement and the VAC. 

One month post first surgery for rectopexi I was back in the same hospital and cared for very well. Surgery was less than an hour. I stayed overnight so the surgeon and wound nurse could see I understood how to live with the VAC system. The best part of having paid for our private health insurance since the late 1960s it means either of us can get the best care, when and where we can. I know this is a two-part health system in Australia but I am very grateful.

Each week I was visited two days a week by the Wound Nurse. This was all covered under ‘Hospital at Home” care from our Teachers Health Program. A machine was supplied, each of the changes of dressings and the costs of visits from the Wound Nurse. This lasted just over 3 weeks.

Since then, our GP and his practice nurse is taking care of my wound dressing. The progress is amazing on the wound. I have so many photos, none of which I will add here but they give me and my husband (the photographer) updates. The medical and surgical teams appreciate my dated photo collages.

Is that IT?

I don’t know but I sure would like to be free of appointments for  the above. This is likely to occur in the next two weeks or so. At least I have no VAC on me and have full independence.

I am back to my prosthodontist in October but I am pretty sure my mouth care will be praised.

Emotionally I am getting there. I know I have gained a great deal of resilience through much of these past 3+ years but am looking forward to a some respite from health professionals for a while,

THANK you…if you got this far.

I hope you are healthy and well.

Stay that way!

Denyse.

Link Up 208

Life This Week. Link Up #208

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.

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My ‘Head & Neck Cancer’ Spring Story. 39/51 #LifeThisWeek. 99/2019.

My ‘Head & Neck Cancer’ Spring Story. 39/51 #LifeThisWeek. 99/2019.

Spring is here.

In Australia and the rest of the Southern Hemisphere. I am glad to have cool-ish evenings and lovely days but, I know from experience, the lengthening of days will bring more heat and then I will be complaining a bit as I can when the heat is on!

True to my word of needing AND wanting to get out and about I ventured to the local beach nearest to us on Friday only to find it closed off due to sand erosion (climate change, anyone??) so I took another way, up the hill then  down to arrive at the sand and gentle waves. Cold water but worth it for the paddle.

Head and Neck Cancer Check.

When head and neck cancer arrives in your life, you are taken into new and different worlds. Fortunately my ventures have been to improve my life’s quality, living with a rare cancer, and meeting many professionals who have contributed to my well-being since my diagnosis on 17 May 2017.

On Tuesday 17 September, a very rainy day, I drove to Westmead Oral Sciences for my 38th treatment with my prosthodontist and he could not have been more pleased with how well I am maintaining the skin (grafted) around the abutments (added implants to my ‘jaw from my leg’) and we both cheered when I told him I am for the most part pain free in the area that had been bothering me for months. Yay.

On Tuesday 24 September, this time on a sunny day, I arrived at Chris O’Brien Lifehouse carrying cards of appreciation and little cupcake packs for my professional team. These people have cared for and about me for over 2 years now and my relationship is close and warm as they are when they note my progress. I enjoyed a catch-up with Nadia from Beyond Five with a coffee as well, and then to Clinic on 2nd level for my cancer check. First seen by Cate, and then Jonathan and the consensus was I am doing so well, no return till early March 2020. As I finished up, I asked Jonathan how I was going in recovery and his words made me smile:  “Denyse, you are our poster girl in recovery”. I left feeling very well indeed. And the cupcakes and cards were appreciated.

There’s More To Life Than Cancer.

I could not be more appreciative of how well my cancer recovery is going and as a result, I am expanding my world and re-connecting where I could not before as recovery, treatments, resting, driving to and from Sydney took their toll.

On Tuesday, after being to my head and neck check up, I drove out to North Kellyville P.S. to see the granddaughter’s school’s inaugural Art Exhibition. What a joy it was to be there and I couldn’t resist this photo. It actually summed up just how well I felt that day!

Gratitude – for my connections found through having head and neck cancer.

And then this happened.

Those of you who have been reading my head and neck cancer posts (see here for access) will know I have NEVER found another person with cancer “like mine”. My professor had told me I was “rare of rare” in terms of risk factors and so I kind of learned to understand that was it. Until I was contacted, firstly by a mother, then by her son. This man is another head and neck cancer patient. They had found my story on the Beyond Five site after his diagnosis in 2018. It turned out, once I was contacted, he was not only living in Sydney but we shared the same professional surgical team, the same comprehensive cancer hospital and he also attended Westmead Oral Sciences.

This person, who is quite happy to be found on instagram here, has a more complex and serious version of head and neck cancer than mine. He and I connected via social media and then personally when we got together for a coffee at a place a bit up the coast for him, and down the coast for me.

Our talking and sharing was so good. I know for me, re-telling some of my story was good but I think, for him listening to the ways in which recovery occurred for me may have helped. Nevertheless he has a way to go right now and I am full of admiration for his attitude and his patience. We are both very keen to continue to spread the head and neck cancer message.

Thank you Fergus!

Time for change. Transitions. 

I’ve written before about the transitions in my life (retirement, leaving Sydney, family etc) before and I am now, 2 years 4 months post head and neck cancer diagnosis recognising a shift in my emotions, signalling change. Even good change has its downside. I am a little more emotional as I consider how far I have come. I am also feeling the feels about ageing…and turning 70 in 2 months. Our twosome relationship in our marriage continues to be strong as we navigate life at ‘this end’ together. Family is less connected to us now as caring is no longer required and they are all just about grown up.

It’s of great interest to me to know how quickly the changes occur. Sometimes we may blink and miss them. On the weekend, our daughter and 3 of her children came for Saturday lunch. We even managed some fun games outside. I admit “we” the oldies got tired very quickly. We also did a a bit of a nostalgic look at one’s growing up years. She will be 23 later this year Yikes! Where is that time thing going? Nevertheless, my afternoon’s phone call from my 96-next-January-Dad reminded me we are all going OK.

How is Spring going for you?

Had you heard about head and neck cancer before my diagnosis?

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 optional prompt is: 40/51 Share Your Snaps #8. 7/10/19

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Share Your Snaps #5. #LTW25/51. My Head & Neck Cancer Photos 2017-2019. 71/2019.

Share Your Snaps #5. #LTW25/51. My Head & Neck Cancer Photos 2017-2019. 71/2019.

I am choosing to celebrate my two years + since head and neck cancer diagnosis in images that mean much to me as a patient who is using this medium to show:

Surgeries,

Healing,

Gratitude,

Waiting, 

Becoming Well.

Some images may be confronting to you. The nature of having a head and neck cancer is that it is brutal in its ways of eradicating it. Be it surgery (my sole treatments), radiation, chemotherapy or a combination of all. Please consider using my experience to get your mouth checked and to follow up any pain, lumps & bumps in the head, neck, under ear areas….And please think about a donation to my Virtual Fundraiser for BeyondFive where I am a volunteer Ambassador. Link at the end. Thank you. 

 

1. Where recovery began. Chris O’Brien Lifehouse in July 2017 and realities of being home and what my body was doing to heal.

2. My ‘mouth’ reconstructed…and lots of waiting for more surgeries and needing to adapt to changes in my mouth. Surgery in Feb 2018 too.

3. And a 4th surgery…gets me closer to upper teeth but such a long wait with a stent attached inside. Getting my #HNC awareness happening & supporting the first Soup for the Soul event telling my local MP about it.

 

4. Many trips to Westmead as my mouth needed measurements, cleaning of abutments area and so on. I had 2 more surgeries to make my mouth ‘teeth ready.’ My first meeting with Central Coast HNC patients. I had not met another HNC patient till almost a year after my first surgery. And....S M I L E.

 

5. So many reasons to smile, show appreciation & help support the works of HNC groups, meet with Beyond Five, smile at my surgeon and see the realities of inside my mouth, with my prosthodontist telling me all about how this is screwed into the cheekbone and more. Yikes. No wonder it hurts at times.

6. With my recovery continuing my confidence improved.It was great to have some special occasions including a belated retirement medal presentation, meet-ups in December & Christmas at our place & to celebrate my 69th birthday at the the end of November.

7. In early Jan 2019 a quick trip to COBLH to see my surgeon where he confirmed ‘extra skin’ was just that, not cancer…and that threw me for a bit (cancer as a possibility). It was good to think about it and consider gratitude and we celebrated an 18th Bday & our Feb meeting of CC HNC support group had a special guest.

 

8. And the memories of the 2 years before were strong but I gave myself credit for getting through tough times then and now. Meeting up with friends AND authors who are friends was fab! My mouth reality is here too. Bit graphic: Before Cancer diagnosed.

 

9. Celebrated my 2 years since diagnosis with my husband on 17 May and he said ” time for the Apple Watch you’ve wanted”. Recently I’ve helped share another HNC patient’s story for Beyond Five, met my daughter for Mother’s Day, had another CC HNC group meeting at the Cancer Council, saw my prosthodontist, my dentist too…and at the special celebration of Chris O’Brien’s legacy for Head and Neck cancer in early June at COBLH loved seeing my surgeon, Prof Jonathan Clark (who became AM from Queen’s Bday honours the next weekend!) and my HNC Nurse Practitioner Justine. I am so fortunate!!

 

10. My friend updated my image for the blog after it had been showing my way before cancer image for 4 years. Now, that feels more like me!

 

Denyse Whelan Head and Neck Cancer Patient now Ambassador.

Consider a donation of $5 or more to my Virtual Event

For Head and Neck cancer patients, family and friends. This is a website and offers lots to help. It continues to grow and change but with no government funding, some donations by companies in related fields and one part-time business manager, a fund-raiser was initiated in 2018 called Soup for the Soul. Soup is often a food that patients with head and neck cancer can manage and it is comforting.

Soup for the Soul is already live and I have a Virtual Soup for the Soul page here.  World Head and Neck Cancer Day is on 27 July.

Have you shared your snaps today?

Denyse.

Kell also has a Monday linkup here. Join in!

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

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

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

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

Having a CT ‘Surveillance’ Scan.

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

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

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

The First Week In June 2019.

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

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

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

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

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

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

 

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

Beyond Five. 

For Head and Neck cancer patients, family and friends. This is a website and offers lots to help. It continues to grow and change but with no government funding, some donations by companies in related fields and one part-time business manager, a fund-raiser began for them in 2018 called Soup for the Soul. Soup is often a food that patients with head and neck cancer can manage and it is comforting.

Soup for the Soul is already live and I have a Virtual Soup for the Soul page here. More about that as we get closer to World Head and Neck Cancer Day on 27 July.

World Head and Neck Cancer Day: 27 July 2019.

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

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

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

 

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

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

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

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

Warmest wishes

Denyse.

 

 

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New Normal For Me With Head & Neck Cancer. 43/2019.

New Normal For Me With Head & Neck Cancer. 43/2019.

It’s occurred to me that I’ve been writing posts about how it was for me BEFORE a cancer diagnosis hereand there are the series of posts about my surgeries and progress found here….but I have not done any updates of NOW.

Now as they say in cancer circles, is the new normalwhich is described here:

Finding a ‘new normal’

Many survivors* say that cancer changes them. After treatment, they may feel different, even though they look the same. With time, survivors often find a new way of living. Many call this a “˜new normal’. It may take months or years to find a “˜new normal’.

Misconceptions about treatment  ending

  • I should be celebrating.
  • I should feel well.
  • I should be the person I was before cancer.
  • I should not need support.
  • I should feel grateful.

Read more at https://www.cancercouncil.com.au/15289/b1000/living-well-after-cancer-45/living-well-after-cancer-back-to-normal/#xc5f7pBq7VeQ7Oeq.99

Fellow Head and Neck Cancer Survivor, Julie McCrossin AM, the inaugural Beyond Five Ambassador hosts a series of podcasts here called About Cancer.

About the word: survivor. My personal choice is this one. However, it is not always looked upon well by some. I have no word to replace it for me. I personally do not like warrior nor does thriver work for me as it does for some. It’s just me. I tend to use patient maybe because I am still getting cancer checks. To each their own, right?

Now, back to MY version of New Normal.

I have really been considering this in 2019 as it ‘felt like’ and ‘looked like’ I was back to Denyse. But which version of Denyse? I am ageing too and I wonder if some of my thoughts are also linked to being in my 70th year.

When I was in pre-cancer times, I was so ‘caught up’ with managing my stress and emotional load at having moved from Sydney and all that entailed in getting used to a new normal for that situation. Suddenly, new normal meant:

  • no longer living in a house we were paying off
  • no more employment for me
  • no more regular contact and care for our grandkids
  • being a more stressed-out person than I liked
  • trying hard (so hard) to be better able to manage the life I had then: 2015-mid 2017

Then cancer entered my life.

Very suddenly I took on a new way of looking at life, and learning what was ahead.

OK. I was stressed but in some ways I knew what was coming and even though there were unknowns, I do know NOW, I have made it through

  • diagnosis,
  • 4 surgeries,
  • recovery times,
  • many prosthodontist visits and treatments,
  • adjusting to life with less ‘in my mouth’ to help me eat,
  • then getting more in my mouth to help me eat…
  • and bingo, the smile is back so…
  • back to normal, right?

OH no, so not true. For me at all.

Partly it was my belief I could be back to eating what I used to eat.

I even bought these foods after not buying anything crunchy for well over a year and they disappointed me greatly. Perhaps, for the chips, a good thing.

However, some of this is true but more is not.

I can only crunch and chew for so long.

It is almost a year since the last surgery inside my mouth to add more skin to the inside of my upper lip and around the top ‘jaw’ abutments. I got my upper prosthesis screwed in on 21 August 2018 and it has been removed only once for adjustment by the prosthodontist. I do upkeep: two routines daily, involving 4 steps using this:

In being totally honest with myself, I can say I need to remember more than anyone that I have changed because of cancer in my mouth.

Head and Neck cancer never really leaves us. This is the reason for Beyond Five where I am now an Ambassador. This site helps patients, carers, families and friends with ‘the years after cancer’s 5 year checks are up’.

Announcement of My Ambassador Role.

It’s stays as it affects our inside and outside areas of the neck, head and inside the mouth, cheeks, sinuses and down into the throat and more. In my case, it is all in the mouth. I was told pre-big surgery, no-one would know you have had cancer or surgery once this is all done, and that is true. In some ways, that is a reason why it is up to ME to manage my new ways of eating rather than expect, as I look normal, others will be able to guess what I need.

This comes home to me even as I can still struggle to eat a meal I have prepared. It takes a long time to eat and sometimes, I just divide it into 2 meals as it tires my new mouth and makes it sore.

This is what I know is my new normal.

  • I get myself up each day between 8 and 8.30 a.m. to eat a nutritious breakfast or weetbix or cereal with fruit/yoghurt and milk
  • I take time to eat as it takes time and as I am retired, I get to enjoy reading the morning paper that’s been home-delivered
  • I will do any minor household chores which are shared with my also-retired husband e.g. a load of washing is put on the line
  • I check my emails, my blog (I have a blog which posts a new post 3 days a week) and any social media
  • Time to get dressed for the day. In October 2017, following the first major surgery I had lost a lot of weight and enjoyed the fact that I needed to buy new clothes. As a previously very overweight person, this was F U N
  • However, I found this to be a new normal for me called #dresswithpurpose and I joined in #everydaystyle for around a year and what a great community of support surrounded me post-cancer. I had no top teeth but as my husband said “I smiled with my eyes”.

Dress With Purpose photos: 2017 into 2018.

  • Each day, after a photo taken by my husband, I venture out for a coffee (and now more often, a treat to eat) somewhere local or more distant. I love this part of my new normal.
  • I have my coffee, I take out my mini journal kit, and draw/write and I people watch.
  • Sometimes I browse if I am at the shops, other times I may be out in nature and enjoy that too.
  • I have my own car which helps me be independent and drive myself to all of my Sydney appointments.
  • After this it is closer to the middle of the day and I come home when I am ready and get my very crunchy lunch ready. It is a joy to crunch.
  • More reading after lunch and sometimes more work/play via the computer.
  • Some outside chores including nurturing the plants that gives me further purpose in cancer recovery
  • Then it is meal preparation or simply getting small frozen version of an earlier meal from the freezer. Batch cooking is the way I go: meat meals made with mince, lamb shanks, beef slow cooked and of course teensy cakes for treats. I love them too.

Now I know this about my new normal.

I need to appreciate this new normal and the state of health I am in. So far, almost 2 years since diagnosis, there has been no return of cancer. I have the best health professionals looking after me and I am grateful eternally for them, their skills and their care.

I will continue to learn more about myself as I both age, and get used to ‘what’s inside my mouth’. I do know that pain comes and goes. I also am reassured that my mouth continues to be healthy inside and I am caring for it well.

I do not have any mobility problems with my right leg even though the fibula was removed for my new jaw. Thanks too for the skin and flesh, right leg!

I am loved and cared for by many as I do of them. This is a very good way to live.

In my 70th year I continue to enjoy creating with art, meeting up with friends for coffee rather than a meal, travelling to other cities by car for events and entertaining our family, along with continuing my engagement with school education, and promoting more about the awareness of this rare, but not nice, cancer called Head and Neck Cancer.

My new normal is awesome.

Denyse.

This post is being shared on link ups here, on Wednesday and  here on Thursday.

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Share Your Snaps #1. 5/51. #LifeThisWeek 12/2019.

Share Your Snaps #1. 5/51. #LifeThisWeek 12/2019.

Welcome to the fifth optional prompt for #LifeThisWeek:

Share Your Snaps

Every 5th week is is photo-centred post. Not wordless for me, however, because….just because!

Let’s meander down January’s memories:

Oh MY goodness it is great to eat real food again. This took a LOT longer to eat than before I had cancer but it was wonderful.

 

My 6th grandchild & 4th granddaughter at ‘her’ dressing table which was mine as a teen, then stayed at home for Mum to use till 2007 and then given to my daughter’s family. It “still” has the Sydney Uni transfer on mirror I put there in 1969. because that was where my boyfriend at the time went.

 

And Pennant Hills Road Sydney…I missed you (not)…on my way to M2 to get to Westmead for a January mouth check.

 

Blogger, Author and Appearance Activist Carly Findlay’s book is here. Launches are occurring all around Australia. I first heard and met Carly at the Inaugural Aussie Bloggers’ Conference in 2011. My copy, on pre-order, is being read by me now. An excellent memoir.

 

On our way to see the family for our grandson’s 18th we drove through roads and streets not seen before: with buildings and shops and houses and apartments and this: a new school! Wow we thought.

 

And a week later we got some pleasing news. Our daughter, teacher-librarian, has been appointed to this brand new school and her youngest has started there too now. Here is the library (only one part!).

 

What an amazing courtyard, and space! It’s a brand new Public School at North Kellyville. We once lived in Kellyville and the land on which the school is built was grazing and acre blocks. So much has happened development-wise since we left north-west Sydney 4 years ago.

 

I miss the white/ pale pink frangipanis we had at the previous rental house but am definitely attracted to the colourful ones these days so when I saw these on a drive through The Entrance I HAD to stop and capture their beauty.

 

This map of Australia caught my attention and that of many when it was re-published by me on Australia Day. Each coloured section represents a country for the original custodians of the land. The Aboriginal people we lived with and taught helped us to learn far more than we might have any other way.

 

Toothless again. It was temporary and of course, on a break from the prosthodontist chair I took a selfie. Just goes to show how much upper teeth make my smile.

 

An unusual spot for me on this trip to Sydney for our grandson’s 18th Birthday lunch. I am in the passenger seat and got to film crossing the Hawkesbury River bridge. It is a marker of sorts for me of leaving the coast and heading to the big smoke.

 

Dad: I came to share some food goodies and meals for his freezer just a few days after his 95th birthday. He is on his balcony pointing to the BIG complex that Dee Why RSL is building on the border of the Independent Retirement Complex where he has lived contentedly for almost 8 years.

 

After buying Dad’s house in 2011 we knew the architect owners would eventually renovate it. It still has come to a shock to all of the family how different it looks already. That is progress of course. Dad is not keen on seeing the updates.

 

Early January I had an unexpected visit to Chris O’Brien Lifehouse (image of the late Prof here) to have some extra skin growth check by my Professor. It is all OK but that day was a wake-up to reality for me. Anytime something “is” different it will be checked to see if it is “cancer”.

Today, Monday 4 February 2019, is World Cancer Day.

Catch up on more here. 

I hope that if  you or anyone you know  does have a cancer diagnosis you would be aware of the many more successful treatments and prognoses these days. It does, of course, depend on the type and stage of cancer when diagnosed. It doesn’t detract from the seriousness of course but to someone who has been through my recent cancer experiences I have found out more than I ever thought possible about a cancer diagnosis.

Best wishes to you all this coming month.

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!

Joining Alicia here for Open Slather and Kell here for Mummy Mondays.

Next Week’s Optional Prompt: 6/51. My Worst Purchase. 11/2/19.


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