Sunday 5th July 2020

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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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

You are invited to the Inlinkz link party!

Click here to enter


 

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

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

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

Musing One.

What has happened this month?

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

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

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

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

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

On my 69th Birthday 2018

Musing Two.

How has the lead-up to the anniversary been?

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

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

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

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

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

December ’18

Musing Three.

What actually eventuated.

Visit to the Prosthodontist.

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

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

 

Visit to the Head and Neck Surgical Team.

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

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

Thanks Cate for all your reassurance and hugs too!

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

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

Musing Four.

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

Westmead.

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

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

Camperdown.

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

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

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

Musing Five.

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

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

 

Musing Six.

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

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

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

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

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

Denyse.

 

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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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Changing Me. 19/2019.

Changing Me. 19/2019

Changing me is I now realise ON-GOING!

It has been many years as I have mentioned in previous posts of living overweight and obese that has given me a skewed view of my image. My most recent post is here.

I am doing what I can now, to approach my thinking with:

  • kindness
  • self-care
  • words of encouragement

and seeing that thoughts are not always true.

I already use the Calm app for meditation each day, and often in taking a time-out will be mindful in whichever are my circumstances as I learn to be present and here….in the now.

Eating mindfully (and planning to eat) is helping me in these ways:

  • I do not follow those rules of ‘only concentrating on one food and mouthful at a time’ mindfully in eating.
  • I do now examine and observe my inner feelings (physical and emotionally) about the why and when of eating.
  • I am getting so much better at this!
  • I am also recording what I eat via a free app and it is Australian foods-based and gives me an idea of how well I am doing.
  • As a no-diet person, this feels good to have some control but also to eat within the generous range I have allowed myself.
  • I am using my fitbit to slowly up my steps each week by 500 steps  from a base of 6000.

On Tuesday 19 February 2019 I had my 3 month cancer check, and my Professor Jonathan Clark was delighted to see no reason for further surgery (yay for now) and when I mentioned my weight gain since ‘teeth’ he said “that’s good.” Oh, he means that is healthy and I am doing well! Of course now I get it…but as I chatted with his clinical nurse consultant who is just the best for me, she and I agreed that moving more is a good idea!!

 

On 23 February 2019 I posted this image and the words on Instagram.

One Year On.

As a person who was overweight to obese for decades, losing weight pre-cancer diagnosis & post cancer surgeries has been a mental issue.

I realise to others I look well, healthier and ok now.

I acknowledge I was 5kg+ lighter a year ago & pretty darned miserable at times because of eating restrictions due to 4 cancer surgeries & reconstruction inside my mouth.

I do think I did the best I could at the time to nourish myself but acknowledge how much I missed:

*chewing

*crunching

*biting

*savouring

FOOD from a variety of offerings! My shopping for over 14 months took me away from foods I missed biting, chewing, crunching & savouring.

From 21 Aug 2018 this changed. My upper prosthesis was fitted. It was novel to try the foods I’d missed: cheese on a cracker took minutes to eat. Then over time as my mouth & my brain handled the different foods better it was/is great.

Then, about a month or so ago the creeping up of my weight on the scales (once a month weigh in- years of measuring my worth via the scales is a horrid memory) was noted & I “have” to admit I knew what to do IF I still wanted to:

*like wearing my new clothes

*feel comfortable in my body

*enjoy all aspects & variations of foods I could now choose from

It was time to choose a better balance between foods that nourish & are enjoyable & to increase my movement each day.

This mindful eating plan I’ve made up is working for me.

I am now understanding the WHY of how I used food to deal with emotions & that it does not work like that MAKES so much sense!

Keeping myself active by changing my approach to movement. Upping the steps weekly by 500 a day,  starting at 6000 a day.

Most of all I want to add is how grateful I am to be well after nearly 2 years of oral cancer & that I can continue to learn best how to care for myself emotionally & physically!

Changing the voice in my head…. the inner critic…to low volume or mute whenever she begins to shout!

So have you ever taken steps to change you?

Denyse.

Joining with Min for Zen Tips Tuesday here.

Finding a place with Sue and Leanne here in MidLife Share The Love on Wednesday

and, of course, Lovin’ Life with Leanne here each Thursday.

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Cancer Is Always ‘There’. 2018.84

Cancer Is Always ‘There’. 2018.84

It is rare these days for me to compose a post and publish it immediately. I have planned posts, scheduled posts and draft posts. Today is different.

I need to write out my truth and my feelings based on recent, significant events for me: a Cancer Patient.

What Do I Mean “Cancer is always ‘there’?”

  • Once diagnosed with cancer I held onto the belief, rightly or wrongly, that my surgery would eliminate the cancer in my upper gums and behind one side of my top lip.
  • It did. In terms of reports back from the many lab results, biopsies at the time of the major surgery in July 2017, and the reassurances from my professional team.
  • However, I do, like many others who have been diagnosed with cancer, “know” that it could come back in another way or form….and also that the reason for my four surgeries has been because I had/have cancer.
  • The many (22 now) visits to Westmead Oral Sciences to have treatments and checks for the progress of my mouth healing, stent wearing and health of my gums is because of cancer.
  • This came home to me yesterday, ONE week after re-gaining what I thought I wanted most: my smile, when it appears that the top lip (cancer site) is tightening again and I need to do some exercises to help it gain more suppleness.
  • There I was, thinking (albeit naively) that the cancer thing was almost gone.
  • Nope, no and not at all really. Check ups, doctor’s visits, mouth checks …..it is not gone nor over by a long way.

Explaining My Mixed Emotions and Responses/Reactions via My Photos.

 

Thank you for reading.
I wonder if any readers who have cancer/had cancer might identify with this.
I am a relative newbie (only 15+ months since diagnosis) yet it feels like I have had cancer forever.
I guess I do.

Cancer is always ‘there’.

Denyse.

Linking with Sue and Leanne here for MidLife Share The Love linky.

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