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.

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 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.

 

• 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.

• What is interesting is that because the top of my mouth is made from my leg (skin, flesh and bone) it acts like a leg. I 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.

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.

 

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.

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