Monday 23rd May 2022

Five Years Ago. My Oral Cancer. #HNC. Part 1. #LifesStories. 31/2022.

Five Years Ago. My Oral Cancer. #HNC. Part 1. #LifesStories. 31/2022.

Interestingly there are hardly any selfies or images of me from before the cancer diagnosis. In fact, until I knew I had cancer, I was taking photos of nature a lot…as I tried to make peace with my inner stress. In fact, this photo, which is not too great, was taken on the morning of what would be the day of diagnosis as I was trying to make a daily photo of autumn challenge…it did not last!

Those who have been following me and this blog for some time will recall that in May 2017 I found out I had a rare cancer in my upper gums and under the top lip. I am now referring to the cancer as oral cancer, even though it remains as part of the head and neck cancer family. The full story is here. 

I was always going to write about this time…5 years ago…and here it is in the lead up to that day in May!

The bit of history behind the story is that I had been troubled by issues relating to soreness and some swelling in this upper gums that no doctor, dentist or specialist dentist could  find a reason for…other than keep it cleaner, use this mouthwash, suck these lozenges…..

And being the obedient patient…I did. Until I could no longer keep wondering what WAS hiding under the bridge of teeth. 

2017 was the year of more stress for me…and it was compounded by the pain and appearance of extra skin over the top of the bridge. My dentist, AB, was finally convinced by me, and he agreed that the only way to find out was the extract the whole bridge and the teeth. On 6 April that occurred.

By 26 April some of my bravery returned because that was ONE big thing I had done at the dentist, and I got over my fear of driving (IBS related) on M1 and saw my Dad after 4 months. This photo is the relieved me with a still painful mouth (that temporary denture was not fun) on my way home.

The person who takes lots of selfies not did not back then. In fact, I tried as much as possible to distract myself from worsening pain, gums growing and a general horrible feeling in my mouth until…

I couldn’t be distracted any longer and AB was seeing me after he’d been on holidays. But first, a visit to the regular  GP on 10 May who, after going through a few other health matters with me as I was leaving her practice for the one closer to home, THREW her hands up to her face when I showed her my sore mouth and gums without the denture.

Nervous? You Bet. Why?

  • Then Doctor, CS, who raise her hands in horror on Wednesday 10 May  and go “What…” and immediately tries, without success, to reassure you… “get to the dentist tomorrow as planned…and here’s form for CT of your sinuses….”
  • Dentist, AB, with whom I have a great relationship and joke a bit, says, seriously,   on Thursday 11 May “You need a biopsy of this from S. I already know that S is the Oral Surgeon, literally 10 paces back down the path from the dentist.

“right”, I say, with lots of questions but I hesitate to ask them…from my diary notes that day….

“Mouth – gums – inflamed & pretty puzzling to him . Going ahead with tests ordered. By Dr C – X-ray & CT (looking for cancer) 😧He mentioned HPV – what warts come from.. low immune system – maybe as I’ve been so stressed. Need a biopsy/ great not!
He said sockets are healing ok but slowly. Will see him after biopsy – which I have to organise.. he spoke of future might have to go to Westmead & I’m resistant”

  • Oral Surgeon. I meet SC on that Thursday straight after seeing AB…and she is very friendly and says, let’s do this tomorrow morning. OK…I say, but inside already feeling the stress of the tests at the X ray and CT place that will be in the afternoon.

But I Needed To See my “now” G.P. who’d been seeing me just on a month to de-brief…. Still “is” my GP…

Got myself quite stressed to point of tears after trying to make sense of what could be wrong with my gums so decided to see OG to catch him up due to transition from CS to him & having been to dentist AB.
He said tests are way to go & biopsy
Also said do anything different – dentist was keen for me to try more ibobrufen but that affects my gut.
He looked in my mouth & said it doesn’t seem worse than last week
He wasn’t convinced re HPV.
Couldn’t rule out cancer but getting tests essential & biopsy.
Once biopsy done & results in – consult with him & dentist.
He was kindly but couldn’t do much more do reassure other than I’m taking all steps he would suggest
Pretty stressed with it & so over it…

The thing is I had been putting up with much of this for 5 weeks after extraction and for months before that when no-one could give me answers.

 

Friday 12 May. How I Managed

….thanks to encouraging husband, who had to do his volunteer work for cancer council that day, my exposure therapy techniques, 1/4 valium, Immodium and sheer courage.

  • drove myself to Ourimbah (about 20-25 minutes from home) and arrived at Oral Surgery to be welcomed kindly by SC and her nurse.
  • straight into the chair. We spoke briefly. I knew there would be a numbing injection, then the biopsy (and I had one 2 years earlier).
  • once numbed up, SC did her work and then applied dissolving stitches and I was given kind care and told the results would be seen to as an urgent one…and I would hear from her on the Monday.
  • mouth was painful but at least something was being done. Some time at home, and tears too from the sheer weight of the emotional strain and then:
  • drove myself for the CT and Xrays. These were looking for cancer in the sinuses and jaw.
  • home….evening…tired out.

Sunday 14 May: Mother’s Day 2017.

Our daughter and three granddaughters came for lunch. I put on a kind of act I guess but in the photos taken that day, I see the strain in my face. As the family was leaving I just shared with my daughter that I was waiting on test results for my mouth the next day.

Monday 15 May.

I got the blog link up sorted, and live and my post had published. We kept to our housecleaning routine…although my eyes were on the clock and when I could ring the CT/Xray place. I did and was told all good. Come and collect them. Big relief: part one. Part two occurred later that day when SC, the oral surgeon rang to discuss the preliminary findings.

I remember thinking “OK, good but what about these horrid, growing gums”. She replied that over time she could help with cutting them back. And I accepted that for then, and because only our daughter and my dad knew I had the tests, rang them with the good news.

Tuesday 16 May.

A normal day in our version of retirement. My mouth was still sore but I felt relieved. I took some photos of the flowers in the back garden. I would have been getting back to my blog post and to those who linked up. Here is that post…just for the relevance…I did not return to writing Telling My Story for another YEAR! And here’s what happened next

 

Wednesday 17 May 2017.

B went to counselling at Lifeline. I was relaxing in my chair, just finishing breakfast when I got this call from the Oral Surgeon SC, who was working in a hospital at Wagga that day. SC spoke calmly and kindly, telling me that last night she received further results and she was sorry to tell me there was squamous cell carcinoma found in the gums. My initial reaction was surprise but not shock as something HAD to be found I guess. The time was 9.25.

And after a little weep, I was able to speak to lifeline, B came home and in the meantime my organisational self shifted into gear. SC had sorted a referral for a “Dr Clark” at Chris O’Brien Lifehouse. I rang his secretary and she said “His associate can see you tomorrow afternoon”. By this time, B was home and after a long hug, we agreed sooner the better…and took up that appointment.

I rang both my dentist AB and old GP CS to share the news. They were very kind and whilst they were sorry about it, there was a sense we were on our way to getting fixed/better….

My head continued to buzz big time and I wanted to share this HUGE news with my now GP, so we had a very helpful late afternoon appointment where his reassurances of me managing the trip would be OK…with the suggested immodium and valium…and B agreeing to stop at any toilet I may need…

Photo of my art:

And that is how I found out I had this cancer. I had no idea of why (there has never been a reason) but I learned over time, not to be concerned about that, just know you have this and that there are people with awesome skills who would  help me over the next two years in particular.

From my appointment on Thursday 18th May:

This is what they saw in my mouth:

This is where B led me to, for a brief minute’s respite to gain some composure after being given the news of what lay ahead for surgery. Window from level 2, Chris O’Brien Lifehouse, where clinic rooms are. This is looking at St Andrew’s College in Sydney University Grounds.

And this is what I signed….after having ensured I understood it all, as the Ass/Prof AE was concerned I might have been too upset. No, I said, I understand. It’s just been overwhelming….B had great confidence in the men he met…and still retains the same respect for them.

Some info: This surgery would not happen for another 7 weeks. I will write about that in July. But here is some information from my 2 and a half hour consultation.

Maxillectomy: we are going to take all of the upper part of your mouth inside. The jaw, the gums and remaining teeth and, oh yes, the palate or upper part of your mouth…

LEFT (in the end it was RIGHT, because CT found blood supply to be superior there, to lift the flesh with blood vessels…& skin grafts and dental implants…

(and funny story, it was ME sharing with them IN THE ANAESTHETIC bay some 7 weeks later, that the permissions were for left leg but they were using right…details me hey! Anyway, I was happy to comply with the written changes ON THE MORNING…waiting for THE SURGERY…and signed away)!

And the fibula was removed to form the jaw: all to happen in theatre and skin & flesh from leg would re-construct me an INSIDE of MY MOUTH….

Sneak Peak: I did not get to see how this looked until October after the first surgery! It blew my mind!

Image via CT..top is my upper jaw and 3 sections of bone from my fibula with 5 implants

Thank you for reading this far…if you did…and I will return with some 5 year updates that have meaning for my life now, in recovery and someone who has had cancer. I tend not to use the survivor or any warrior type words.

Denyse.

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Comments

  1. It’s such a huge encompassing experience. Even if it’s all treatable, there’s no way to minimise it because it takes up much of your time and thoughts to deal with it. I think you drawing is a really good visual of that….the dots don’t seem to change but they do.
    I have heard stories of Chris O’Brien Light House now charging $2000 a radio treatment due to the changes in Medicare to the user pays American system that the Libs had in their platform last elelction. Very sad indeed.

    • Denyse Whelan says:

      It’s been HUGE alright and not until I take the opportunity to write like this do I have a sense of how it was. It has also enabled me to grow in so many ways too.

      I think the drawing does sum it up…one day “no cancer (knowledge” next day “you have cancer”

      I have a few of my drawings and mandalas from then (I did take blank ones to hospital too) and I dated them so I have an idea of what else I was dealing with.

      I am so disappointed with what is going on with our health system…come on Albo, get a compassionate grip back for this nation of ours. I am quite fortunate that for all my tests (still) which are not at COBLH are bulk billed. These days though, as we found out recently, you have to request bulk billing if you age/financial situation warrants it.

      Denyse.

  2. Gosh 5 years have flown, Denyse and look at you now! I have followed your inspirational journey and can’t begin to imagine what you have been through. Sending hugs as you remember your journey. xx

    • Denyse Whelan says:

      I know, 5 years…and you have been alongside me as one of my ‘cheerleaders’ too. I always appreciate you sending me the diary and cards with me back in 2017 into 2018.. Time recall not as good as it was.

      I wrote this story, and there will likely be at least one more to add to my page about head and neck cancer but to remind me and those who have followed the story how tough it was….

      Thank you again for your kindness and support, Sue.

      Denyse.

  3. Although I know much of your story Denyse, I still teared up while reading your post. I can feel your pain, anxiety and then some hope and trust in the doctors, through your words. It’s a huge milestone for you and I thank you for sharing with us. The photos of your art and your words, last night when I made this I was OK…..really set me off. Hugs to you! xx

    • Denyse Whelan says:

      Oh Debbie, thank you! How sweet and kind. I did not know how else to share this post except with all the emotional memories and the drawing is but one example.

      I have set out to do this series for me first of all, and for anyone else who might want to know more about head and neck cancer. Trouble is, my version was incredibly rare (rare of rare according to my Prof) that the specifics are just mine.

      However, I guess it can help others to know that it is a long, slow and often painful recovery…and T I M E is needed! Oh gosh, that was why I did so much art…distraction!!

      Thanks for being an awesome cheerleader too. I need my friends like you!!

      Denyse.

  4. It’s been a horrendous journey that you’ve handled with stoicism and grace Denyse. I know exactly what it’s like to “tear up” when your doctor/dentist presents you with news you weren’t wanting and with the fear of the unknown ahead. You have done so well and have been a shining light for others along the way, but I also think it’s good to acknowledge the fear, pain, discomfort, and the hugeness of it all too – it keeps what you went through in perspective (it was NOT a little walk in the park!)

    • Denyse Whelan says:

      Thanks so much Leanne. I have tended to downplay the highly emotional descriptions of the story/journey as I went through it as I had to manage my emotions to be able to keep going.

      My husband would understand I needed to talk about it but he also advised over and over, that to dwell in the ‘awful’ space and the ‘horrid’ treatments did not serve my resilience and recovery so well.

      He was right (darn!) but I also knew I could share at times how hard it was…and yet if I kept thinking that way, I could not have successfully driven back and forth to Sydney so many times in 2018 before my teeth could be attached.

      I do now let myself look back and give myself a high five of celebration and achievement for doing this cancer thing!

      Thanks for being one of my kind cheerleaders over the courage of these years. It really helps!

      Denyse.

  5. Appreciate your stories of resilience. So inspiring!

  6. I remember so much of this clearly. And I remember the day of the big surgery, I was at a conference and refreshing Facebook for news from your daughter.

    • Denyse Whelan says:

      Oh yes, I remember that you’d had your tonsils out before my surgery, I think!

      I so appreciate that you were looking out for those updates Vanessa.

      And what a wait it was! I have a screenshot of my daughter’s message too.

      And just last week, unsure why, I looked at my surgeon’s notes/report sent to my GP (GP has given me all my records) and there was something in there about the lymph nodes taken for pathology and the result being phoned back to theatre at around 2 pm….I went under around 7.30 am…and it was an 11 hour surgery. Kind of made me realise when I saw that just how long they had worked on me too.

      I was told there were two teams. One for the mouth: get the cancer out etc…and one for the leg, take the bone etc …no wonder it seemed crowded when I was wheeled in. My last memory was seeing my prosthodontist gowned up, in a sea of other doctors/nurses and I had been told beforehand it was using a double theatre.

      So good to be well. I never take it for granted.

      And it’s lovely when people I know via blogging and SM care for me and my progress. Thank you!!

      Denyse.

  7. Even though I’ve read many posts on this ‘awful time’ in your life I enjoyed (if it’s ok to say that) this one more than any other. Breaking it down into smaller detail, the time frame and the emphasis on your emotions seemed to make it more real….to me. It helped me understand the enormity of the situation and my admiration for you has grown.

    Here’s to the next 5 yrs – living loving and laughing in a (hopefully) less stressful lifestyle
    Take care
    Cathy

    • Denyse Whelan says:

      Of course it is OK to say this Cathy. In fact I am glad its been noticed just how it was for me.

      Remembering is so important for me now as I can review the time and give myself credit for ‘getting through it’ despite the enormous worry and fear.

      It literally was a time of growth for me personally as only I could do what I did, and get on with things as I did.

      It’s been a huge thing really and it’s only on occasions where I can write like this to express it all, and at times chat with my husband that I realise how much I had to deal with.

      But here’s the thing. Such a ‘good news’ outcome and if in some way my story about the courage it took (doesn’t have to be about cancer) may help another person some time.

      I felt differently inside when May arrived this year and knew I had to do a write up of sorts to honour what I had gone through. This has been part of what I did.

      I also sent letters of appreciation and gratitude to my adult kids and the grandkids, and cards to my professional teams in oral surgery, dental work and surgery. People who help others like me need to know the good they have done! And that I am well as a a result. I even sent a card (with a photo) to the original GP up here whose hands flew to her mouth when she saw my gums. I stopped seeing her with our new GP had a more convenient local practice.

      Yes to the next few years…I am ready for what comes and sadly it is likely to be the death of my Dad which is the next ‘big thing’. He is OK at 98 but….you never know.

      Take care, and your comment was great, I loved it!

      Denyse.

  8. Oh my gosh – 5 years – really?! Where has all that time gone? So hard to believe it was 5 years ago. What a scary and uncomfortable and I’m sure painful at times experience you’ve been on. As I’ve said time and time again though – you have been so brave and strong. You looked for positives and you found things to help you through – like your art and your coffee’s out and your outfit of the day photos and sharing on the blog. You are amazing and should be so proud of yourself! xo p.s. I’ve spent the day throwing together a blog post (it’s been a month since my last one) and so I am late to link up.

    • Denyse Whelan says:

      Yes, five years and my lovely blogging friends have been here for me all this time…and before.

      I am very grateful Min for the support and comments along the way as I have charted this course.

      It is not until this recent time of reflection I have admitted just how hard it was, and so writing it was important for me to do and for the messages of checking your own oral health to be shared.

      I did grow so much in my confidence and self worth through this pretty awful time and I am grateful for those inner improvements very much.

      I am glad you have written a post to join in today too…and thank YOU along with others who I have mentioned above in my comments back to them for being a great cheerleader for me along the way.

      Take care

      Denyse.

  9. Reading this account, I almost feel like I am there with you; though, of course, I cannot know how it felt for you at that time. I am so glad you were persistent and able to get an accurate diagnosis and appropriate treatment. Going through the experience of writing about it these five years later, how do you feel? Is it cathartic, scary, both? You are such a strong, resilient woman. Thank you for sharing your story with us. Take care of yourself.

    • Denyse Whelan says:

      Thanks so much Christie for visiting and your kind and thoughtful comment.

      I had no idea what, if anything, I would do about the so-called 5 year thing because all of this is yet another step that is new. Cancer = still here but gone yet we are given the so-called all clear at 5 years….

      When faced with what was the actual diagnosis on one day, and the next to hear how these clever surgeons are going to take the cancer away (fingers crossed) and replace what they took from your mouth with parts of your leg, it IS a big shock but also one I went along with because of the trust in their prognosis for me.

      My husband was there throughout and his summing up was ‘these guys know what they are doing and we can trust they know what they say is going to happen”.

      So, back to how I felt writing this post, I am probably still in a bit of an unclear daze about my status as due to Covid, I haven’t physically been examined by my surgeon since Sept 2020 and have relied on the regular exams by my dentist here and in Sydney telling me all is OK….

      Once May arrived with its similar weather patterns and life markers of family birthdays and Mother’s Day I felt slight anxiety again from the memories and as often is the case, deciding to write about it was a good plan.

      I am a prolific note writer at important times of my life, so I had my own quotes to use as I remembered..

      After doing the first draft, I felt a mixture of relief for the post and what I had been through and also some pride in being able to write about it in this way and hope that it may have presented as a coherent read for others…

      And, I am so glad to say, that based on the kind comments from you and others it has.

      Thanks for giving me something different to consider. I enjoyed working through that!

      Denyse.

  10. Taking notes is so important when you get a serious diagnosis so kudos to you for starting that right away. It also helps to have a second set of ears because sometimes your brain can be totally in frozen mode from the info so glad that B was able to be with you for your journey. I think writing about it and being the ambassador for the medical world are both very healing actions. In talking and writing about anything painful and hard it can be difficult but once done it gives one a feeling of relief. As to the team you had — once established it seems like they were top notch it just took a while to get to the right spot which is so frustrating. I have been involved in long surgeries similar to that and it’s quite incredible what the surgeons and their teams can accomplish. Take care. Bernie

    • Thank you so much Bernie for your words which are so “spot on”.

      The emotional times were so hard before diagnosis but with meeting the team, and both of us thinking we had landed in the right place (very true as it turned out) my feelings went on a different path from 100% unknown, to having some confidence in the process and the team.

      It did not mean it was smooth sailing at all in those 7 weeks but I was on my way…to having this cancer removed so it was a forward and more positive path than the unknown.

      Yes to having someone with a person who is going to hear all kinds of stressful things..I also used to take a notebook (still have it!) with the questions and some of the answers I would fill in later.

      Given my love for sharing knowledge and more, becoming an Ambassador for head and neck cancer awareness gave me a focus that valued me again. After retirement that can be hard. So this fit the bill.

      I landed in the right place as I said by complete trust in actions and knowledge of the person who sent me there…..as we had no idea…and over & over again I have thanked her for that.

      As for my team? Love them all. Very close to them and will miss seeing them (but for good reasons) after September 2022.

      Interesting to know that you too have been cared for like this too! Very good indeed.

      Denyse.

  11. It’s fascinating to me how detailed your notes are from the experience. I’ve never gone back to re-read my journal from those early days of my own cancer diagnosis but I doubt my notes are as detailed as yours. I have memories of it – the call that my mammogram showed some concern and to come back in with the plan for multiple testings. Waiting on the biopsy results and being told on the day I should get them that the individual to communicate them was out of the office! It being end of the year and the surgeon’s office struggling to find open operating room time (end of the year in the USA is when folks plan elective surgery for insurance reasons). But your details of the emotions really make the experience come to life. Thanks for sharing.

    • Patricia, I have been a keeper of notes – via my phone and on-line diary since we left Sydney in 2015. I have, because they were not helpful to me now, deleted a lot of them. However I have incredibly clear memories of the emotions on the week leading up to diagnosis and beyond so I was able to write with this amount of clarity.

      I also tend to write some kind of summary after a Dr/Dentist visit in the calendare notes on my phone too.

      Not everyone wants to look back and I get that too. I have to measure carefully how much I do this as my emotions can spiral down about some events.

      As for your experience, gosh how awful for the waiting….and the end of year thing too. In Australia we do that too. I say ” we close down from after Christmas till early/mid January” which is our summer as well.

      Oh I know how waiting feels and thank you too for sharing as well.

      Take care,

      Denyse.

  12. I am certainly no doctor or dentist, nurse or hygienist but I cannot imagine how anyone could look into your mouth and see what you have pictured above and not be more concerned than prescribing continued good dental hygiene and use of mouthwash. Just WOW!! Bless your heart. No wonder you were in pain. I don’t know how you could get out of bed.

    Bless your heart, so thankful that you are on this side of this horrific experience. You are a wonderful reminder to all of us as to how precious and precarious our good health is. And your smile warms my heart every time I encounter it.

    Thank you for sharing what must have been some of your most difficult days in hopes of helping others.

    • Denyse Whelan says:

      Leslie, you have made me smile and get teary at the same time, thank you so much.

      Yes to your incredulity at how long I did have to wait, and until I insisted that the bridge and teeth under it be removed, and got my dentist to agree, who knows how long that cancer would have just kept growing.

      Now I am incredibly grateful to be well, even though the journey to recovery (5 years ago now( was tough I did come through.

      The other reason the health people did not go as far as they might have is because “no-one thought of cancer” for me as I had no risk factors and in a female even less so. I sure AM a lesson in look for the rare!!

      Take care, and I love your cheerleading of me in recovery!

      Denyse.

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