Tuesday 24th September 2019

What’s in a word? Cancer. 2017.82.

What’s in a word? Cancer. 2017.82.

Since I heard the word, cancer, to describe what had been found via pathology from the biopsied tissue from my gums, I have seen it and heard it everywhere. However, I think, it’s like when I  first become pregnant, I saw other pregnant women everywhere.

It’s more noticeable because it affects ME. So, whilst there is still no word (ha!) on the exact  date for my cancer surgery, I thought it timely to write a post.

I have been incredibly well-supported already by those in my friendship realm here in the blogging world and elsewhere.

Each has been from someone who has had cancer, knows someone with cancer, and is currently being treated for cancer.

I read recently  that 1 in 2 of us will have cancer. Wow!

My family of course have expressed their concern and care for me. I have been visited by almost all of the immediate family and that has been lovely. What I have found too is the outstretching of hands (figuratively) of so many is helpful and reassuring which is why I blog about it.

Here’s what I wanted to share briefly:

I had been on a roller-coaster of emotions ANYWAY before I was diagnosed with cancer, so to add cancer to the mix has raised those anxious thoughts of mine to greater levels. But, I am thankful that I was already doing much to help myself with anxiety and adjusting to our new way of life. Meditation, being more mindful, walking, being outdoors, blogging, enjoying some Netflix with my husband, going to the beach, taking photos, supportive health professionals  and generally engaging on social media are already integrated into my life. So, they have become tools for managing my thoughts about cancer too. 

Thank you to the many people who have sent me messages, cards and let me know that I am in their prayers, thoughts and hearts.

“We are all just walking each other home” Ram Dass.

It is very humbling to have such a lovely group of you with me.

Most of all, I thank my husband who is already my finest supporter and rock! He will be with me as much as he can within the first days in hospital and I know, not matter what state of grogginess I may be in, he will be within arms reach for me. That IS love. I am so lucky.

Thank you everyone. I hope that if the word ‘cancer’ is part of your world by association or for you that you too will be cared for and about like I have been. I am blessed. This image is one I am using when I need to take myself to a more enjoyable mindful place. Enjoy!

I am grateful every day.

UPDATED: About my present state of health. 

When I wrote this post I thought I was managing myself quite well. Since then, I have had some pretty horrid days (and nights) where I have become fearful, panicked, and so vulnerable I wanted to go into a corner and hide and never come out.

I am shit-scared right now.

I am worried about losing what I valued: my mouth where I speak, eat, share my emotions and smile. It has been days of crying uncontrollably, being held until I calm down (thank you dear B) and taking some valium (which I don’t really want to) and letting out the fears  in words between the sobs. 

I fear: the loss of ability to use my mouth for at least 7-10 days, have a naso-gastric feeding tube down my throat for those days, having the skin/flesh/bone from my right leg inside my mouth after 3/4 of my upper jaw/palate as been removed. Dealing with the not being in control.

I am, as I write, unable to really express what it means to be facing this loss of control of my body. I will be in ICU to start and may even have a tracheostomy to start if the mouth is too swollen. This is very scary to me, and I am admitting it now.

For me to admit how vulnerable I feel right now is to say “I cannot do this without help”. My husband reassures me he will be there as much as possible, and given how I will look and be, he will be my only visitor until I give any indication I can see others. I am facing the unknown and that as we know is the scariest place to be. I will be losing my smile….for more than a while. Possible 3-4 months until my upper jaw recovers.

Have you faced major surgery of any kind for cancer and other reasons?

How did you deal with it?

I am so wanting some answers that help me know – in the pre-surgery phase that I am not alone in my fears. 

Thank you for reading this far! I appreciate that very much.

Denyse.

Joining Kylie Purtell here for I Blog On Tuesdays link up.

Linking here on Thursday with Leanne and friends for Lovin’ Life.

 

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Comments

  1. Oh Denyse, I’d really love to be there and give you a big hug right now. You’ve got every right to be scared, nervous and anxious. I’m torn between saying that to you and making you feel worse, and reassuring you that you can get through this.
    It’s a huge curveball, let’s be honest. Your smile is gorgeous and of course you have to mourn its loss for a little while. It will be back though.
    I’m sorry that I can’t reassure you beyond that. My Mum’s cancer was around her stomach, so she had a feeding tube inserted into her stomach, and a radiotherapy port (I think that’s what it’s called) in her chest, so nothing as invasive as what you’re going through.
    I wonder if you could reach out to the Cancer Council or similar organisations. Maybe they’d be able to put you in touch with someone who’s gone through the treatment before and could maybe reassure you a bit more?

    • Thanks Kat. That was really helpful for me to read. I have a psychologist I see from time to time and I can see her again before hospital but I also am not keen to talk too much more about it….at the moment. This is the last blog post about it till I’m well again to post.
      I am cognisant of not wanting to over-share nor become ‘someone who only writes about cancer’.
      I want to do more over time that relates to the other things. However, for now, it’s very hard for it not to be front and centre!! Your words were very much appreciated. Denyse xx

  2. You are not alone in being scared pre-surgery. Mine was probably as routine as surgery gets & I was still scared. I’d be more worried if you weren’t scared; not that that helps you much, I’m sure. I have no helpful advice to offer apart from that I’m still convinced you will be ok. You are strong and will show your strength in recovery. (Of course, when people say that to me I always think well what if I don’t want to be strong & why should I be, but stubbornness is like that!) Again, nothing helpful to offer apart from thinking of you.

    • Vanessa, thank YOU! I have had major surgery before (1988- hysterectomy) and quite a few day surgeries for my hands. However, THIS one looms because it is invasive of my mouth and will be taking so long. In my head I think it’s huge (and I am not denying it) but I also know that I, like you, will be showing my strength in recovery. I always do. Mind you, I am quite a bit older now and one of the reasons I need some extra checks before surgery is that. The A/professor actually said to me “you’re young and fit” so you should do well. I liked that!! Hope your recovery continues to go well.

  3. I can’t even imagine how scared you must be… or how worried. I’m a huge control freak so completely understand that lack of control.

    I’d not even been in hospital until my surgery last year and though it was still a big deal, it was elective, so hardly comparable. I’d told my mum not to come away though and in reality I really missed having no one there for me. I was released a bit too early and I think if someone had been there they would have helped me push to stay longer (I had an episode when I got to my hometown the morning after my release where I couldn’t speak or make sense).

    My dad had lots of hospital visits (radiotherapy, plus lots of surgeries) but he had no qualms about his heart transplant. I think we all saw it as not-optional – even though the outcome and results weren’t guaranteed.

    On a practical note, will you have pen and paper for notes and conversing for those first few days? You could have a little blackboard to remind you of your school teaching days.

    Big hugs and kisses…

    • Thanks Deb, your words are very reassuring. I am glad my husband will be around, even if I am in and out of consciousness. He will be staying close enough to walk back to the place where I am having surgery. Just need to confirm the date and the doctors are being not 100% on tieing that down yet. Pretty annoying for a person like me who needs to plan!!
      I have a notebook and pen ready should I not be able to speak, but I hope it wont be necessary. Even if I don’t have the tracheostomy my mouth will be swollen with the new added tissue and skin (eeek).
      Your own story tells me I am doing it right and even though there have been days I have said I wont have the surgery, like your dad, I have no choice. The damn thing is growing and very sore. Can’t wait for it to be taken out to tell the truth.
      I know you made an offer to help out with the blog but next Monday I will post about my intentions. I will blog until the Tuesday before surgery (assuming it is when I think) and then let the blog sit idle so to speak until I am ready to post again.
      Take care of you too! Denyse xx

  4. Oh D, I had so many days and nights like you describe throughout my treatment. I think the main thing that helped me was medication, support from my husband and parents and just knowing that horrible scary situations and feelings do eventually pass. There is so much bullshit around the idea of always being positive when you’re facing cancer. A lot of it is not sunny and positive but scary as f*#k. I freaked out when I had radiation treatment and all I had to do was lie there very still for ten minutes every day for a month. They literally had to calm me down every time and i had to get my mum to walk in with me. But I’m here now. Not much consolation to you at this point.

    It also helped me to talk to a cancer psychologist. I could give you the name of the lady I saw if you like. She was very good. Or do you already have some one? Thinking of you.

    • I think of you a LOT and admire how you dealt with the blow that you never saw coming either. Thank you for your words and most helpful comments here too. I see a psychologist here who has experience with patients with head/neck cancer and will possibly go see her before surgery. My husband is my best friend and thanks to his counselling training and experience he really does help me with undoing my crap thoughts and all that jazz! Thanks for your help again. I so appreciate it and probably this will be my last post about cancer until I am well and on the ‘other side’ of surgery. Denyse xx

  5. I wish I was able to do something to help you. You are so brave and honest about your fears and feelings, and so articulate.
    Dear Denyse hopefully all those impositions will be only temporary and you will return to being the lovely lady with the beaming smile and the wonderful husband.
    Meanwhile I offer you my hand and shoulder. Keep fighting my friend.
    Love Pam

  6. Denyse, I feel it takes an exceptionally brave person to admit their fears and vulnerabilities. In doing so I anticipate that your Doctors and support staff and even your family will be able to reassure you. Giving them that knowledge allows them to take the best care of you, and hopefully allay any further fears as they develop. I wish you much luck, and will hold you in my thoughts xxx

    • Thank you so much Nicole. I hadn’t looked at expressing my fears and vulnerabilities that way so your words have been really helpful. I appreciate the kindness in your message too. Denyse xx

  7. Big love to you, Denyse. My dad has just come out of the other side of a bowel cancer diagnosis and the thing that struck me most was how quickly our health system swung into action once the results came back. It was overwhelming, but it also made me realise how lucky we are to get world-class treatment without being financially bankrupted in the process. All the best for your treatment x

    • Thank you Melissa. It is good to read that about your Dad too. I hope he does well. It is a diagnosis none of wants but when it happens you are so right, out comes the help we never knew much about. So far my condition has cost us one private consultation fee. We have always held top cover in private health insurance for teachers so know that my hospital stay and related costs are met by them. I have already approached the surgeons about some discount in fees. However, this operation is relatively new and I am just grateful its there for me right now. Today we got news of some wonderful accommodation close by where I’ll be for my husband to stay for those first days and it’s so cheap because it’s for country-based patients like me. Today has been better as I have had quite a few questions answered. I wish your dad and family all the very best! Denyse xx

  8. Oh Denyse. I can’t imagine what you’re going through. I mean I can … but I also can’t … because I haven’t personally gone through it myself. As you know cancer is all around me, but it is not in me. My arms are outstretched towards you in a virtual hug, And when they’re not they are clasped together in hope, positive thoughts and faith that it will all turn out ok. xoxo

    • Thank you my friend. That IS a beautiful thing to say to me. I am blessed by my friends out there and already in my heart.

  9. I am so sorry to hear this. Believe me when I say I know what this journey is like. I have only recently gone into remission for stage 3 breast advanced breast cancer. I had dose-dense chemo every second week for 12 weeks, 2 rounds or surgery within 2 weeks and 6 weeks or radiation then 12 months of Herceptin infusions. It is the scariest thing anyone can ever go through. I pray you are safe on this journey and I am so pleased to hear you have support. Please email me if you wish to talk further. My treatment took 15 months in total and I have just got the all-clear from my first post-operative mammogram yesterday. All the best. xxx

    • Oh wow….yes I knew you had cancer but this explanation for me is so helpful. Gosh, how you have done this with the children and all I do not know! I only have to think about me and my husband. I have confidence in my surgical team and the precision with which they are going about to reconstruct the inside top part of my mouth is mind-boggling. I have had 2 major dental consults with the reconstruction dentist – and he will be helping make the jaw bone from my fibula in surgery and placing implants in that. However, once I am home from hospital I will be toothless on top until hopefully the skin graft/flap heals & then in 3-4 months begin the notion of some false teeth and maybe in another few months, implants. THIS assumes there is no cancer found anywhere else but I will be needing 3 monthly and 6 monthly check ups till 5 years is passed. Thank you again for sharing your cancer story and yes, if I need a friend to chat to, I shall be in touch. I have some wonderful sharing women who blog who have had cancer and are offering support too. Best wishes and sending all my healing vibes to YOU! Denyse xx

  10. Oh Denyse, I know you are scared and it’s ok to be scared…it IS scary! I had major back surgery 7 years ago so I totally get how you’re feeling. All I can say it be kind to yourself, be gentle with your body, asks as many questions as you need to (to the professionals dealing with your case, stay away from Google) and learn to rely on others for a while. You will be ok xx

    • Thanks so much Sarah. Yep, went on Google just the once. Enough! I know that I have complete trust in my surgeons who are specialists in the field so I need to be content with that. I have been buoyed so much by everyone’s support and care!

  11. Oh Denyse. I really feel for you. I can totally understand why you would be so fearful and overwhelmed. It’s the fear of the unexpected and it’s not nice. I’m thankful you have a wonderful support network around you. Sending positive vibes your way xx

  12. If there is one thing I have learned in this last week since seeing the support and donations my cousin has received to pay for her back surgery (she was in severe pain and it was limiting her ability to care for her two high special needs kids, and so without private health insurance they have had to pay for the whole thing themselves, but thankfully many people have donated to help with the costs and care for the kids and it’s amazing to see) it’s that people are amazing, and the first & hardest step on the road to recovery is being honest and asking for help. You’ve done that, and I know you will come through this with flying colours. Your spirit & determination is absolutely beautiful & inspiring, Denyse and I will be praying hard for you over the next few months xxx
    #teamIBOT

    • Oh my, that is a heartwarming story to read. I do hope she is helped by the surgery. Thanks for your very kind words, good wishes and prayers. I am blessed to have a lovely on-line community for sure! Denyse xx

  13. Hi Denyse,
    I’m so sorry to read of your recent diagnosis. Thank you for sharing your emotions and thoughts so openly. It takes a lot of courage to do what you’ve done and I’m sure you’re helping many who are facing uncertainty through cancer diagnoses. I hope your surgery goes very well and look forward to checking in on you on your journey.
    Bronwyn x

    • Thank you so much. I had mixed views on whether to share or not (didn’t want to be known as ‘cancer-centred’) but most people have responded just as you have so I am now glad that I have. It actually makes me feel better by doing so and having support back is amazing!!

  14. I understand as much as I can about your trepidation as we felt very much the same for my Dad, before his surgery. There are so many unknowns and, unfortunately, there are no certainties. It sounds as if you are as educated about the procedure as you can be. Having family close by, before and after your surgery, is also a must. I ended up staying with Mum for the first week following Dad’s surgery to support her and be there for Dad too. We were given discounted accommodation in Bondi, a 10 min bus ride from Prince of Wales (where dad was). Will your husband have support too? That’s something to keep in mind for the days following surgery. It can be lonely and scary watching a loved on recover from major surgery on your own. Hugs to you D x

    • Thank you Kirsty for all your helpful information. B seems to be fine with how things are going and he will be staying close by for the first 4 days and we found good, cheap accomodation too thanks to a recommendation from the hospital. I am not wanting to see anyone other than him for at least that first week and he is going to be giving out info to our family. Your words of understanding are very comforting. Denyse xx

  15. I think the worst thing about surgery is the fear of the unknown. I had two surgeries for my thyroid cancer and even though the second one was much longer and much more invasive, it was much easier because I knew how things would pan out. All your fears and feels are totally valid, and I think it’s so important you get them out, “because better out than in.” I totally get the not being in control, it was the thing that addled me most in diagnosis and treatment, but in doing so, I learned to let go and that’s been an important lesson to learn. I hate that you’re going through this, but love that you’ve got such a warm and loving support network on and offline and that you’ve got a top notch medical team. Sending you a big squishy hug – you know I’m here if you need me xx

    • Thank you Sammie. You have been and continue to be the most helpful support person! Your sharing of your experience is both positive and encouraging. We all need to be in control don’t we and it’s when we are not that we are most vulnerable. However, I have decided I know more about teaching kids than the specialists do so they might feel vulnerable if they had to teach kids reading!! Denyse x

  16. Oh Denyse, I’m so sorry to read this post and how you are feeling at this time. The panic you describe, I wish I could take some of it away from you, the mind is such a powerful thing isn’t it. I am so glad you have an amazing support system, I’ll be cheering you on from the sidelines too. Love and strength to you x

  17. Denyse, remember this – no matter what happens to your mouth you will still be able to express yourself through words online, and through your beautiful art xxxxx

  18. Oh Denyse, it must be really hard to go through this and I can see how vulnerable you’ve had to be to disclose your fears. I don’t have any words of advice but I’m sending all the positive vibes and hoping for good things. You are in my thoughts xx

    • I have realised for me it is best to have it ‘out’ rather than ‘in’ so there I am…all the fears and worries! Thanks S for your kind words. D x

  19. Hugs to you.

  20. Nothing more to say than sending hugs. No need to respond x

  21. I can’t imagine what you’re going through, yet at the same time can understand the massive rollercoaster it must be. Loss of control – yep, that’s a big one. I’m so pleased (for you) that you’re expressing all of this – as devastatingly hard as it is to do. Sending hugs & huge virtual doses of whatever support it is that you need. You’re strong & you’re loved.

    • You know, I don’t think any of us knows how it can be until it does ‘hit’ home. I found the first days of knowing I had cancer very confronting. Now, I just want the surgery over…even though it is going to a long road to recovery…and to hear (as the doctors hope) that all the cancer has been taken and no further treatment will be required. I appreciate all hugs and virtual good wishes!! Denyse x

  22. Denyse, I’m sorry but I don’t have the words to adequately provide the support you need. No one really knows unless they have experienced it do they? Just know that you are very brave to even write about the big ‘C’ and your feelings. Don’t ever be ashamed of feelings and sharing them because we would all be feeling the same way. You must be very special to have all the support and love around you so just focus on that. Sending you love and hugs xx

    • That is so true Sue but each person, such as yourself, who adds some words of comfort and care is a boost of something which helps me feel I am further connected to a great network out there! Thank you. D xx

  23. Dear Denyse I wish you “peace” at this time. Fear is very valid and I was also sh*t scared.

    Prayer helped me through my cancer surgeries, 6 months of chemo,12 months Herceptin, Radiation and other treatments.

    I pray you will feel the universe has your back and be filled with strength so that you may get through each day, knowing B and others are there with you every step of the way.
    I pray for your comfort in knowing you have a great caring medical team in control.

    Thinking of you often and sending love and hugs.

    The Cancer council has great resources and is available for support. They have a confidential service where you can speak or email a specialist health professional about anything to do with cancer. One to one support.

    • Thank YOU! Recently I made the word P E A C E on some rocks from the beach and I intend to take some things from here which comfort and soothe me – crystals, shells and so on as there will be a lot of ‘down time’ I suspect in my 10-14 day stay. I think of you often and your cancer journey which has taken many more detours than one person should experience. I see your strength and your dignity and I see it held through your faith. I am always comforted by people’s prayers and words of support and you my friend are one very special person to me…Denyse XX PS Yes, I know of some of the support systems and I will be taking advantage of what I need as I go along.

  24. Denyse thank you so much for expressing your fears and vulnerability. So many people try to hide their true feelings behind a smile and glossing over things. What you are going through is real and scary and a huge hurdle in your life. You will come through it with grace and with the support of your lovely husband – hold on tight, know you are loved, know you live in a country with the very best medical care, and know you will come through it all in the end. We are all thinking of you and walking the journey with you – xxxx

    • Thank you so much for your kind words and understanding. You are not the first person to tell me that you appreciate me sharing my fears and vulnerability and I guess I thought that’s how I can deal with it by sharing the real version of how it is. My GP has said something similar when I have erupted into tears of anguish…”I’d be more worried if you were laughing it off or not wanting to talk about it.” I like knowing I have a world of supporters out there….and you are one! Denyse x

  25. Denyse I’m so saddened to hear this lovely. Sending you big love and hugs!! I’m so glad you have your gorgeous husband right by your side, along with many loved ones. We’re all here for you too in Blogland. Although that sounds silly it’s so so true!! I’ll be thinking of you these next few months and sending you all the positive healing energy. Hoping you’ll still be able to smile with your eyes til you can once again. And always feel you can express all the feels whenever you need to, no matter what. We’ll all be here to cheer you along xox

    • Oh that is so sweet and so true. It really does not matter whether we meet up IRL does it when we ‘click’ via blogging and SM then that is cool!! I am very grateful for all cheering and good wishes. Yes, my eyes can still smile!! Thanks for the loving reminder. D xx

  26. It sounds like you have an awesome man by your side. No real advice, except what I always tell myself when going through sh!t and/or scary situations … this too shall pass … I’m sure you will receive the very best of care in hospital and they will do all they can to make it easier for you. xxx

    • Thank you Janet and for reminding me of that saying. So very true. I am going to be in good hands in the best place there is for this surgery.

  27. Cat @ life through the haze says:

    Dearest Denyse

    Wishing you all the love and strength to get through the next few weeks. I can imagine how frightened you are right now I felt exactly that way when I had my liver ca resection. I didn’t ask nearly as many questions as you partly because I was terrified.

    I remember thinking that the nasogastric tube would be the very very worst of all but if I can tell you honestly it really wasn’t and didn’t bother me at all. I also remember being terrified of ICU but they will keep you so medicated that you will barely remember it.

    So much love coming to you and I know you will come through this and bounce, most of all because you have the strength and determination and you have the most amazing support next to you xoxo

    • Oh thank you Cat, that is really helpful!! Our brains tend to focus on the worst and the unknown at these times. I sure am hoping that it goes well and becomes a distant memory soon. I hope your recovery from your recent surgery is going as well as can be expected. Denyse x