Monday 27th May 2019

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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Comments

  1. Hi Denyse – I love how positively you’ve worked through the last couple of years, recognizing the difficulties but not letting them get you down. You’re right about having a new normal, but that’s not necessarily a bad thing either – you’ve grown and found new pathways in your life through the whole cancer journey and now you get to sit back and settle again – adjusting to change is difficult (I know all about that atm!) but so rewarding when you accept it and find peace with it.
    Thanks for linking up with us at MLSTL and I’ve shared on my SM 🙂

    • Thank you Leanne. Lots of lessons for this teacher to learn. I am still doing that too.

      I accept that I have changed and grown but it is still ‘odd’ to use old(er) and more familiar ways of being and doing when they are different.

      Even today when I went for a much-loved coffee and treat, I had a small ‘choke’ with the coffee being too hot and it spurted out of my mouth. Still getting used to limits but also loving what I can now do with what I have.

      I hope you can continue to see how this ‘new normal’ for you is also filled with possibilities some of which are ones you may not even know yet.

      Denyse x

  2. Thankyou Denyse, I loved reading about your new normal. My Mum was to turn 70 this year also My new normal is still in a state of change, but just since my last doctor’s appointment I’ve come to accept the now of it and stop trying to race to the next step (workwise). There’s lots of things I’m grateful for in my new normal.

    • Now I have another link to you, sharing a similar age to your mum as well. Gosh, life is a rocky road and not such a fair one.

      I can see that change to whatever is possible for you now in terms of workload etc would be challenging because you are wanting to follow the rules from before.

      It is something I would struggle with as well. This striving thing is hard to let go. In my case, I have had it longer but no need to use it in work now. Your case is different and would be hard.

      Like I have said to you earlier, be as kind and gentle to yourself as you can. Very tough last couple of years and thank you for your care and support of me too.

      Denyse x

  3. Your new normal sounds like a good place to be but I know you still struggle with dealing with things. Changes can be good and bad but you are getting there and your posts show us how strong you are. thanks for telling it like it is 🙂 #mlstl

    • Thanks Debbie. You ‘get me’ and it’s hard on fewer days now which is a good thing.

      I am learning, as well as the ageing factor, that not all things I could do or want to do with ease are as possible as before.

      That is life!

      Writing helps me but sharing the stories and having supportive commenters like yourself help greatly.

      Denyse x

  4. You are truly such a beautiful and inspiring woman, Denyse. I admire your strength of all you have gone through and finding your new norm. There are many life changes situations, like yours, where we have to find a new norm. It can be exciting and scary at the same time. But you are such a strong person. One full of life despite it all. God bless you for inspiring the rest of us to be our best no matter what. xox

    • Oh thank you Bren. Those words are very kind and help me feel encouraged as I move through this part of my life.
      Yes, there is new normal in many of life’s transitions.

      I highlighted this one in particular for me as I “look” as I used to but it is far different “inside my mouth”. Many head and neck cancer patients would be in agreement.

      Denyse x

  5. Thank you for sharing a glimpse of what your new normal looks like and how it feels. I wish you continued good health and as much happiness as your heart can hold.

  6. You are fabulous Denyse! I don’t believe it would be possible for anyone to have cancer and not be changed by it. You would still be yourself at the core but with many lessons, appreciations and gratitudes accumulated along the way. There would be new fears too – I know there would be for me. Aside from that – as you’ve said, there are new daily routines and regular health checks, and more. You continue to inspire me every day. xo #TeamLovinLife

    • Yes it IS a game-changer and one I have to accept ready or not.

      However, it is an opportunity to grow and as humans when we stop learning then ….well, you know!

      I do appreciate the consistency of your care and support through this page and others via social media. Some days, these matter most!

      Denyse x

  7. Thank you for sharing this part of your life. I imagine it would not be easy to write but it gives us a great perspective that most of us don’t usually think about.

    • Thank you so much Betty.

      I share to help me and to do the same for others.

      Others who may be cares or family members of a cancer patient but also to help people like me too.

      When we are together it feels better. I am in an amazing support group on Facebook that is based in NZ and I have made good connections there that mean a great deal.

      Denyse x

  8. I can imagine that you hope everything will be like ‘before’ but guess it can’t. You’re also a different person – more resilient and know stuff you didn’t know then, so on the inside you’ll be changed.

    What’s that saying about how we can ‘never go back’?

    • Oh yes, “that saying” and as if we humans always take notice of it!

      Thanks, Deb. I actually think many of life’s twists and turns change us anyway but via this particular illness, I have heard/read the words “soon you will be back to normal/or your old self”…and that was why I decided to write it out.

      Even my husband has exclaimed, “you would never know, from looking at you, that you’ve had cancer in your mouth” True I guess but I ‘feel it’ inside in every way. Right now, my mouth is hurting, despite meds and I “know” it’s part of what it is in recovery but I don’t like it!!

      Distractions like blogging help A LOT/

      Denyse x

  9. I think survivor is a good term. You’re a different person to what you were then – not better, not worse, but different, so it stands to reason that your version of normal would also be different. Same same but different.

    • Thanks Jo. In the absence of any other word, I will keep it. I think there’s been a bit of groundswell about the idea of “no war type words” in describing cancer: fighting, warrior etc. None of us really wants this disease and I know the patient’s outlook and adherence to treatments contributes but it does make the opposite true. Someone dying can be viewed as they “did not fight enough” which is absolute B.S.

      Anyway, glad to be well. I am in some pain in my mouth which I think will wait till I am back to Westmead mid May. It’s like this some days!

      Denyse x

      PS I made A.N.Z.A.C. biscuits today: first time in years. I can eat via dunking!!

  10. Such a great ambassador Denyse and although your new normal is different to your previous normal it is great to see your photos each day on Instagram and I you still have a purpose even after all you have been through. Thank you for continuing to share your story and being a part of #MLSTL. Have a beautiful week. xx

    • Thank you Sue. The regular commitments to the daily photo, getting dressed with purpose and going somewhere for coffee each day are now embedded into my routine and help a great deal to break up the day and somewhat ‘normalise’ life again.

      I hope the move is continuing to go well and that you enjoy making your own space again.

      Denyse x

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