Wednesday 15th 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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Comments

  1. You are such an inspiration Denyse. Thanks for sharing all the ins and outs of your experiences. I can identify how difficult it is for you to eat out. A few years ago I had a stomach issue which meant I could eat solid food. This went on for a couple of years before It was fixed up. Eating out was a nightmare. It’s good to read how well you are coping. And well done for being such a huge support for others suffering with this form of cancer. #MLSTL Sharing

    • Thanks so much Jennifer. I never ever set out to do anything other than comply with all I had to do to get well and to 1000% trust my surgical and dental team. This is why I am so keen to be helping with getting the messages of head and neck cancer out there. I literally had no idea until my diagnosis.

      Yes, I also understand about the eating out even before cancer. My IBS made my life tricky for a few years. Now it is better controlled with some medication.

      Your kind words are appreciated!

      Denyse x

  2. A great update. Remember we are always interested in your cancer because your story is so extraordinary. A credit to you and your health professionals. As for stepping aside from head and neck cancer as time passes, yes, good idea and I have done it in the past but one can live a full and interesting life as well as inhabiting the head and neck cancer world. The secret is to have a variety of interests!

    • Thank you so much Maureen.

      You have been a great support to me since we ‘met’ on social media.

      Already I am paying ‘less attention’ to what I cannot do and more on what I can. So important but it’s always about adapting…in fact tonight as I try yet another meal combo I shall be seeing how that works.

      Head and Neck cancer will never ‘be gone’ for me in terms of interests and education of others (and self) but art is falling into place as is more in terms of being mindful. I am about to embark on some more learning there. Can’t keep us teachers from being learners can we?

      I was really glad to note your bio on twitter says ‘retired teacher’ now. We are teachers forever!

      Thanks again for your kind and helpful words.

      Denyse x

  3. Hi Denyse – could I just say that you are definitely the “rarest of rare” in so many ways! This was a really interesting post because it gives some insight into all that you still have to cope with – especially with the eating and numbness and tightness. You’re so right about people forgetting and moving on because you look so normal again now – I think that’s what people who lose a loved one feel like too – lots of sympathy and support in the initial stages, then everyone else moves on while their grief is still a huge part of their lives.
    I hope you have a lovely Christmas with your daughter and family – it’s wonderful that you can all move towards a closer relationship again – and I hope all the mouth stuff continues to improve in the year ahead. xx
    Thanks for linking up with us at MLSTL and I’ve shared on my SM ☺️

    • Oh Leanne, that is so lovely of you to say. Thank you.

      I am glad to have written this update because it helped me too. The not so normal is my now normal. I am still adjusting and probably always will. No-one knows how ‘we” head and neck cancer people end up eating or drinking because there are so many variations in treatments and then side-effects of treatments. I did a count up, and even without adding in posts I’ve done for others like you and Sue, I have written 41 posts since mid may 2017. I will only write when there is something to note from now.

      The one thing I remain extremely grateful for..and hope I never have the need for it..is that I did not have radiation. As my team thought almost all of the cancer would be gone and the very low risk of any recurrence meant they would not recommend the brutal radiation as it is applied to the face.

      Friends in my groups who have had that treatment are left with scarred areas inside the neck and mouth and parts that simply do not function because the radiation destroyed the good bits too.

      Nevertheless it is good that we do share the issues and the successes too. The social media pages and my local group make for interesting stories to share.

      I like your reference to someone dying. It “is” like that in terms of initial shock, the support and time passing…

      We are looking forward to sharing Christmas with the family…and for the first time, ‘we’ are doing the travelling.

      Your insights and care are always appreciated.

      Denyse x

  4. Hi Denyse, I’m once again reminded how very brave and courageous you’ve been throughout all of this, and how you continue to be a shining light for us all. The ins and outs of your recovery have been so many and varied and horrid. To say they have been tough would be an understament, and reading about your challenges with various foods made me realise that you have had to learn to cope with so much. You do look absolutely blooming and very gorgeous though – your smile is lovely. I really wish you well for the days ahead, and hope especially that over Christmas you can indulge in some of the things you love. Wishing you all the best for 2020! xx

    • Oh Jo, those words are very kind. In my eyes, I have done well and I also find it amazing what the human spirit can manage. I have made the best of this situation without trying too hard because I have such good people doing all they can for me and I am learning to adapt all the time.

      It was much harder for me to deal with day to day life with the anxiety and stress I had from retiring and moving…with cancer, I had something to do, to get done and to be well again. Yes it took a LONG time and there were days it was painful and boring but I got through.

      I like what having cancer has taught me and that comes from being connected to so many people, you included, who think of me and care about how I am. It truly helps!

      Thinking of you this Christmas…these are hard days so close the the time of your mum’s passing.

      Be gentle with yourself.

      Denyse x

  5. You’ve come so far Denyse…. I know there are ups and downs and can’t imagine what that’s like for you but I’m sure you’re pleased to be in such a better frame of mind. And though it was a horrible thing to go through guess there are lots of learnings as a result… and that you’re far more appreciative of things!

    • So much truth there. Life WAS much tougher in 2014-May 2017 when I had such a horrible time with anxiety, stress and general low levels of mood. I used to do all I could to try to work it all out but now know I literally had to do a lot of learning about myself and make changes for all that to occur.

      Welcome (!) cancer into my life. I agree there were many downs and ups but each day was doable. I have such a great on-line supportive network (of which you are one) and that helps me so much.

      Blogging, even on days I did not fancy it, has helped me in a major way make a good recovery.

      Cheers
      Denyse x

  6. Thank you for sharing this update, Denyse. What a remarkable story of courage and resilience. I can’t imagine what you have been through and applaud you for educating your readers on this “rarest of rare” occurrence. You look amazing and your positive attitude is inspiring. Wishing you a very Happy Christmas and best wishes to continued good health in 2020!

    • Thanks so much Barbie. Your words of kindness and comfort are very welcomed.

      It’s been a time alright. However, by writing about it, I am helped see the progress I have made, and my story is out there for others.

      This is why I continue as an Ambassador for Head and Neck cancer awareness.

      Glad you dropped by and we have connected here. Good wishes sent your way for Christmas and the New Year.

      Denyse x

  7. You are amazing Denyse. I found myself getting teary reading this post. You’re so brave and inspiring and I feel so proud of you. It’s been a big year including turning 70 and you should be so proud of yourself! xo #TeamLovinLife

    • Oh Min, that is so beautiful that you were affected by my update. I truly am going well but writing about it and recalling some of the images does cement what I have been through.

      Now, whilst nothing is the same, life is good and I am well.

      As I wish for you as well!

      Denyse x

  8. There is a saying, along the lines of ‘Let your story be someone else’s guide book’. I truly believe we shouldn’t reinvent the wheel and let others have to struggle alone. If our story and our battles can make it easier for those that follow after us, then it is always worth sharing. If you help just one person, then you have done enough. I think it’s wonderful that you have been so generous and honest with your journey, and you know you’ve helped MANY people not feel alone, find better pathways and cope. That is a fantastic thing to do. #Openslather

  9. Thank you for your wisdom & insights! Love the connections here in blogging which help me too, along with helping others. Always appreciate your words!
    Denyse x

  10. I always enjoy reading about your experiences, and I love the word you have chosen. I think it definitely takes time to move past an experience like you have had, and I can see you processing and moving forward through your writing. Be patient with yourself, as you challenge yourself to expand into new experiences!

    • Thank you so much Bethany. I am sorry to be late in my reply. Oh gosh, yes I do need to be a ‘patient’ patient but it takes a lot from me to be so!!

      I wish you well in 2020.

      Denyse. x