Tuesday 16th October 2018

My Head & Neck Cancer 1st Anniversary. Pt 1. 2018.44.

My Head & Neck Cancer 1st Anniversary. Pt 1. 2018.44.

Writing this post I feel a surge of gratitude for my cancer diagnosis.

Weird?

Well, for me, BEFORE I knew that there was a nasty cancer called Squamous Cell Carcinoma in my upper front gums, I was anxious, fearful and this had been building up for the 3 years since just before we left Sydney to come and live on the Central Coast. My life was reduced to managing a sense of fear any time I needed to leave the house. Whilst it was not quite crippling, because I have a very determined edge to my nature, it was not how I liked feeling. AT. ALL. Blog posts here and here tell more:

In early May 2017 after a series of medical and dental examinations, CT scans, X-rays, a biopsy for gums that were not only NOT healing after the teeth and bridge had been removed  but were growing ….the news came through about WHY. The posts about my cancer can be found here.

Words are few but pictures tell much of my story. Away we go. Oh, and I AM someone who takes lots of pics and am grateful to have this record.

Part One.

In the lead up to the first Anniversary of my diagnosis I had thought this post could be a ‘thank you’ one.

I did not realised until late March that I would need a 4th surgery. However, I accept that the mouth still needs more work ….and I am trying not to whinge too much about the fact I will be having the ‘mouthguard/stent’ in for much longer AND another skin graft….because whingeing is not cool. This post is going live AFTER my 4th surgery on 16 May 2018.

I have accepted that there is no real END time with cancer.

I will be having checks until mid 2022. Then, as with most head and neck cancer patients, there is more to come, such as management of my implants over time. See this wonderful Australian-based  support site: BeyondFive here.

So, no “thank you and farewell post” for Part Two. Just more gratitude and let me show you who those people are and why I am grateful!

Part Two is scheduled to go live on Tuesday 29 May 2018.

Denyse.

In many ways I hope, that as I am a teacher AND a learner, anyone who knows someone with Head and Neck Cancer might find my posts helpful. It is one of the reasons I blog: to share, to learn and to connect! My page above has my other posts relating to my cancer story.

On Tuesday this posts links with Kylie here

On Wednesday this post links with Sue and Leanne here

On Thursday this post links with Leanne here.

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Comments

  1. It’s a good thing they used a leg bone and not a foot bone for the reconstruction. Can you imagine the never ending foot in mouth jokes? 😉

    • Yep!! I even used it (leg for foot) in the very early days….amazing how our bodies kindly help.

      Mind you, it doesn’t always work for everyone as I have heard of one patient where the body parts used in his mouth got rejected. That would be hard, because there is nothing else that can be done.

      Denyse x

  2. Following your journey has been very humbling. You are strong and honest and amazing.

    • Thank you Natalie. I am glad to have friends and bloggers who help me along the way as you have with every uplifting and encouraging comment. None of us knows the strength we have within until we are tested like this. Mind you, there are days, and today has been one, when it’s an emotional one and as my hub says “tears are better out than in”.

      Denyse x

  3. Amazing visual record. Sharing this will be so helpful for yourself and others. We don’t hear much about your type of cancer. You’re amazing.

    • Yes I know. I had no idea of it either.

      It also now comes under the umbrella of Rare Cancers Australia and there are many hundreds of them.

      Cancer sure is a bugger alright.

      One of the purposes for me in keeping on writing was to inform and help others and also that was why my story was picked up for Chris O’Brien Lifehouse and Beyond Five as a patient’s story.

      Mind you, it took a long time for me, prior to surgery last July to want to investigate much at all and even if I had wanted to, there were not many stories from Australian patients on-line.

      Thanks for your 100% support always.

      Denyse x

  4. What an incredible journey you’ve been on! I pray all goes well as your journey continues.

  5. Actually, I think you are perfectly entitled to whinge after what you’ve been through the last year. I don’t think it’s weird about feeling gratitude about my diagnosis, I “celebrate” my cancerversary every year with great enthusiasm – it’s a good time to be grateful and reflect on how far I’ve come. I know your diagnosis has taken a lot from you (not just your teeth and gums!) but in this visual diary, I can see how much it’s given you and how you’ve been able to share your humility, strength and courage and have channelled and shared that to inspire others. That visual record is so awesome – it tells your story so powerfully and I can’t wait for the happy ending even though we know there’s no ending as such, but there is a start of a new chapter 🙂

    • Thank YOU Sammie! You have ‘been there’ for me in so many ways and were the inspiration behind setting my blog up with a page to help others or for other to read about the journey.

      Being an unknown (to me and many!) cancer it is classed in Rare Cancers Australia of which there are hundreds!

      We too are connected even moreso as your cancer is part of the Head and Neck group of cancers.

      It actually helps me to ‘see my progress’ by looking back too. Next week, names are named and where possible their photos are included. It will then be the ‘last of the cancer posts’ for some time UNLESS there is a good reason for more.

      My intention to keep blogging is strong and I want to explore some other parts of my life that others may also find interesting or indeed stir some memories. I kind of like that sort of sharing. In fact I brainstormed myself last night and came up with 35 ideas!! Go teacher me, I still got it.

      I am unsure when you are headed back to the Mother Country so I wish you anxious-free travel and a wonderful time..even though I know you are in for some pretty challenging chores…

      Denyse x

  6. Hi Denyse and thank you for sharing your amazing journey with us at Midlife Share the Party. It certainly has been a wild ride for you and your husband and one I think you would have preferred to pass on. However, you have shown great courage and fortitude in taking the cancer and surgeries head-on. What a wonderful inspiration to others and especially to your families. From a personal perspective I’m sure you have found greater strength than you thought you had. I love that you are keeping a photographic diary as you can look back and see how far you have come. Have a beautiful day my friend. #MLSTL

    • Thank you very much Sue. Your comment sums up what I take from this as well. I was stressed enough before cancer but it was general…life stuff. Cancer helped me garner my courage and conquer some fears I started to believe were unconquerable. For that I am grateful.

      I do use gratitude as a practice as much as I can, even if it is a silent counting and naming what I am grateful for of an evening or morning.

      Your support, care and comments are most encouraging and help me greatly.

      Thank you.
      Denyse x

  7. Wow! Your story is amazing and inspiring. My husband is a 5 1/2 year survivor of stage IV lung cancer. I know how special these anniversaries are. Bless you!

    • Thank you so much Heather. It’s good to know other such as you ‘get’ the importance of anniversaries. Best health wishes sent to your husband too!

      Denyse x

  8. I really love your positive attitude, Denyse, and the way you keep pulling yourself up after a bad day, it truly is inspiring xxx

    • Thank you Kylie. I do what I can to lift myself up. Today wasn’t great as last night had a hiccup with the latest skin graft and when I am also tired (drove to see Dad in Sydney) my mood shifts.
      Lucky I remember (mostly by myself!!) to 1. get dressed….2. get a photo taken…3. go out…because once I do that, the world I go out into helps me re-group.

      It did that very thing just now.

      Denyse x

  9. Denyse, you’ve been on quite a journey and, as you say, you’re still travelling. You are doing so with humour and heart and great courage. You’re an incredible woman. The gratitude you express for the people and experiences along the way is surely matched by the gratitude people feel in knowing you. #MLSTL

    • Oh Karen, that is such a lovely thing to say.

      Thank you very much.

      I was feeling a bit down about the cancer thing this morning but decided to remember what I was grateful for and then get dressed (up), have a photo taken and go out for a coffee. It worked!

      Denyse x

  10. I hope your recent surgery went well Denyse, and that you’re well into recovery mode. As I keep on saying, and will say again, you are very courageous and brave and people are inspired by your tenacity to keep on writing about your journey and showing that you just have to keep on keeping on and being brave every single day. Sending hugs and good wishes.

    • Thanks Jo, it is kind and loving words in my conversations here that help me and buoy me up when things get a bit tough.

      I have had a small hiccup with the skin graft site last night but was grateful I could contact my professional team via social media and get advice. So pleased I can do that because living a distance from Sydney where my team is makes me concerned if anything ‘goes a bit wrong.’

      Mind you I live with a calm person who usually can talk me down from anything!! Lucky!

      Denyse x

  11. Thank you, thank you, thank you for sharing your journey. Head/neck cancer is the worst…my husband was diagnosed with stage 4 head/neck cancer in the winter of 2001, had surgery to remove his soft palate (including his uvula), getting a prosthesis so he could talk, having radiation, having a good 18 months before a recurrence on the other side. More radiation, severe side effects, chemo…he lost his battle but fought like bloody murder to the end. You are doing amazingly!!!!!!!! Keep it up and I plan to follow your journey. A positive attitude goes a long way! As he always told me, “Life is for the living,” and that is what you are doing! Good for you!!

    • Oh Donna, I just shook my head in sadness reading your husband’s story and outcome. I am so sorry.

      The thing I am most grateful for is what technology and current practices in Head and Neck cancer has brought me in terms of treatment. I know how fortunate I have been. I do have a ‘whinge’ if you like about some of the limitations but also know mine are likely to be temporary. So far, almost 11 months and another 4 to go before I may get the implanted teeth in my upper gums.

      I appreciate your kind words and I am humbled that you will continue to follow my blog. Next week is the last week I will be posting about cancer for a while. I need to break too!!

      Sending warm wishes,
      Denyse x

  12. has it really been a year? I love how you’ve kept a diary of your journey via your blogging and photos. It really does show just how far you’ve come.

    • Yep a year goes fast in some ways and very slow in other ways. I am kind of glad I did not know a LOT ahead about how long this would take…and now will take to get to any kind of normal eating again. It has been the HARD bit even though I am relatively creative in cooking.

      Blogging came into its own to help me, and to share the story, so I am grateful it was there for me to ‘tap’ into…geddit?

      Denyse x

  13. Denyse you have been an inspiration to us all as you’ve gone through the journey of the last 12 months. Your grace under extremely trying circumstances is particularly notable. The pictures you post (the good and the less-than-good) all speak to your willingness to be open about what you’re going through. You will be amazing in another few months – grinning with your new teeth on display for us all to see. And BTW that birthday dress looks gorgeous on you. xx

    Thanks for linking up with us at #MLSTL and I’ve shared this on my SM xx
    Leanne | http://www.crestingthehill.com.au

    • Ah thank you Leanne, you are so kind.

      Who would have thought (not me!) that having cancer would lead me to wearing a dress again. Oh.

      Mind you I am going to need to be careful when i can eat from a bigger range of foods because I like this size and I do not want to buy any more at a larger size.

      Thanks so much for your continued support and care. It means a lot!

      Denyse x

  14. What a journey you have had and how well you have done documenting it. God bless you on your continued healing and staying well.

  15. Good on you and your positive attitude. I hope the healing goes well from the latest surgery.

    • Thank you! So far I think it is going well. The skin graft site was not happy yesterday (it was weeping!) so my professional team said I could get the covering off a week early and that it will be OK.

      I am not good when things go a bit wrong but I have a very reassuring team and husband – thank goodness.

      Denyse x

  16. I’m always in awe when I read your posts Denyse, it’s always very humbling.The story in photos, confronting but joyous all at the same time.

    • Thank you, that is so lovely of you.

      I realised how much blogging helped me before I had cancer and once I decided to share the stories over time, and the pics, it helps me see how far I have come.

      The beauty of social media too is that I connect daily and I find that so helpful.

      Denyse x

  17. Denyse you are incredibly brave. I know I’ve said it before but it is so true. I can only imagine how scary and upsetting this whole journey has been and continues to be for you. xo #TeamLovinLife

    • Oh Min, you havent seen my tears!! On the way home from Surgery #4, even before we got to the car, I broke down. Sometimes I need to release that valve!! From the day before, driving down, staying overnight and then turning up confidently to face the 4th surgery I was not that pleased to have….and then recovering very well (so grateful!) ….the emotions had to go some place after that and they did.

      Mind you I know tears are not necessarily a sign of weakness either but it sure does help!!

      Thanks for your constant and loving comments and care,
      Denyse x

  18. What a journey you’ve been on Denyse. I wish you nothing but better days ahead and a return to normality eventually. #TeamLovinLife

    • Thanks Kathy, right now that would be ace…normal life again. Bit too distant for me to even guess but I sure hope it will be sooner rather than later!

      Denyse x

  19. As usual I love your honesty and positivity and know you’ve struggled at times. I’m hoping the next year is full of more ups than downs and you’re able to reflect positively on it! xx

    • Oh Deb, I am hoping so too. I have been disappointed this is going well into the second year since diagnosis before I get true eating independence. However, I am also guessing this too will be something else to learn to take slowly.

      Thanks for your unwaivering support too. Always appreciated.

      Denyse x

  20. Thank you Denyse for sharing this very personal and inspirational journey. You are a wonderful example of gratitude, strength, and fortitude. Wishing you many wonderful things in this next year!

    • Thank you so much. Very kind of you to write that about me.

      I often think ‘none of us actually knows how we will be in any health crisis until we are.’

      I am glad some strengths of mine re-emerged!

      Denyse x

  21. I’m so glad that you chose to have a positive attitude toward the cancer. I know that your writing about your journey is a help to many.

    • Thank you Betty. I am not a default to the positive person but I have been able to garner so many of my previously hidden (for a while) strengths that I am pleased to say I can now see much of my world through the positivity angle.

      Lovely to see you commenting here again too!

      Denyse x

  22. Gosh – I can’t believe it’s been a year since I got that PM from you with your diagnosis. Wow. Which means it’s a year since C was going through her leg surgery which then went septic. Time really does fly. Although probably doesn’t for you and C who are going through it. So much has happened for both of you since then. Both good and bad. A year is long and a year is short. But when it’s all said and done, it’s still a year.

Denyse values & reads every comment written, thank you. There is always a reply.

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