Monday 18th December 2017

Reality Bites. Part One. 2017.96.

Reality Bites.Part One. 2017.96.

Today, 6 August 2017, as I write, it is exactly ONE month since my cancer surgery on 6 July 2017.

I am calling this post ‘Reality Bites’ as the consequences of the diagnosis of cancer, the pre-op visits and treatments and then the ultimate ‘reality’…. the complex and major surgery in my mouth and on my right leg have truly ‘bitten’.

I am writing it out so I can honestly tell you, my readers, that I am NOT doing so well in that emotional sphere at the moment.

This is despite my previous posts where I appeared to be going so well. I was/am in a physical sense.

Readers who want to read more about what this surgery was about can go here:

my diagnosis….my updatesmy grateful post #1my grateful post #2.

Reality has bitten in the form of a heightened emotional response (and IBS frequency) to what has happened to me…my feelings are catching up with what I have been through – from date of diagnosis 17.5.17 till now. (less than 3 months!)

Here is how it is for me NOW as I recall memories that are not great and are affecting me somewhat even though I know things will get better over time.

  • Wow, it’s been one month since the huge operation which I  knew was going to (hopefully) take all of the cancer out of my mouth and leave me with a reconstructed mouth using tissue and bone from my right leg.
  • I recall my feelings of being totally overwhelmed when the surgeons began to describe how they would ‘fix’ this cancer in my mouth only one day after I found out I HAVE cancer.
  • I got through the drive home after that with my hub on my least favourite road (M1) as I tried to wrestle the past 24-48 hours into some sort of sense for me. It was surreal.
  • At home I ‘tried’ to go on with ‘normal life’ but that is impossible when the word C A N C E R shone like a red light in my mind constantly.

“last smiles” were/are treasured but under those false teeth it’s cancer

  • I made  plans and prepared for hospital,  making meals for later,  and making sure I had sufficient clothes and activities ready to take to the hospital but it was surreal. I was doing this BECAUSE I have cancer. It still did not make sense to me.
  • I know that I saw my GP and psychologist about the surgery and what is meant to have cancer and yes, I cried sometimes but other times I was just numb. THIS could not be happening to me!?
  • My mouth and its discomfort and smell were the source of the cancer and I began to ‘hate’ it.
  • I also knew this surgery was going to take away 3 things that were and are precious to me: smiling, communicating and eating. Made me sad and quite stressed.
  • I was resigned to what the operation was but I truly had no idea of how it would impact me because it was like I was somewhat detached.
  • I knew that the surgery would be within 4-6 weeks of our consultation with the surgeons but oh how those weeks dragged on as I wanted to surgery to be over…but I also did not want to have it. So horrible. It  ended up being 7 weeks after diagnosis.
  • It took me weeks to finally get out the hospital forms and complete them. I just couldn’t before. I had to make myself do them. Filling them out meant, of course, I HAVE cancer and HAVE to do something about it. 
  • I made a decision to stay in a ‘cheap place’ the night before surgery and I so regret this as we were uncomfortable and I spent some of the time ‘feeling guilty and responsible’ because I have cancer. 
  • On the day of surgery, at 6.00 a.m. we  presented yourselves at Chris O’Brien Lifehouse, and then once ‘checked in’  I undressed and got into the paper gown which meant THIS is about to happen. O.M.G. 
  • I said goodbye to my husband and was off….the journey into the unknown…the operating theatre.

I’ve written two posts (see above) which described how things went for me in hospital so I will not outline any more here today.

The next post will outline what happened emotionally in hospital and then my homecoming. I have chosen to write about it all from an emotional perspective as life as a cancer patient post-surgery is affecting me and writing it out is to help me.

At home in my first weeks.

Have you had cancer?

Do you have an experience of having a life-changing event for you where things caught up with you later on?

I appreciate your comments and support. I am not looking to ‘get advice’ as I think that in recognising what is happening to me and letting it happen is probably the healthiest way I know how.

Thank you for your support!

Denyse.

Joining with Kylie and friends here for I Blog On Tuesdays and here with Leanne and friends on Thursday for Lovin’ Life linky.

 

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Comments

  1. Oh Denyse, such a difficult time this must be for you. I wish I had some words of wisdom to relieve your emotional pain. I hope it is ok that I say how amazing I think you are. The strength you have found to confront what you have had to go through, is nothing short of inspirational. I can imagine how difficult the recovery is, especially when it all happened so quickly. Be kind to yourself, sending you big hugs xx

    • Thank you Nicole for your kind and loving words. There is no way to make it all go away of course but today I have decided to put myself firmly back in the driver’s seat for this ride. I was letting too many others (medical people) tell me what to do and how. It feels better already trusting myself! Denyse xx

  2. I am sorry you’re going through this and the only thing I can say is the same thing that was said to me: when you’re going through hell, just keep going. I know, right. Like you have a choice. It’s not easy and it’s hard to be positive all the time despite what people think. You’re a fighter from what I can see, and I know you won’t give up. Thank you for sharing this and being so honest.

    • Thank you Ness, I so appreciate your words as you DO know what I am writing about here. I must say that you tend to get all caught up with appointments, go here, do this…that it is not until some of that settles that you ‘allow’ the feelings to catch up. And they do. I know you have a loving supportive husband as I do and I know that helps me through this every.single.day…and of course, my friends from blogging and elsewhere. You are very important people in my recovery! Denyse xx

  3. I think it’s so healthy that you are acknowledging this all. And how therapeutic is writing?! Can’t beat it, I swear.

    The night before cheap place would bug me too. But I guess if you think of it like any travel (granted this is the worst reason I can think of to travel!), you just literally never know before you get there what it’ll be like.

    • It sure is! I have been using writing as a tool for grief and anger for some time before this but letting it out in public as I have here has taken some courage. I never want people to see me as “that cancer blogger” which is why I try to keep my blog varied. However, I “am someone with cancer” and as some others have said (which I had not considered) maybe me being so honest and open actually helps others to open a conversation with another or at least to share what someone else is experiencing.
      Oh that place we stayed at. O.M.G. I seriously tried to find somewhere else that night I was so upset about it but it wasn’t possible. Imagine an ex-convent..we were located 44 steps up to small room with 2 beds and an added in shower/toilet. We couldnt make a cuppa there or bring food into it. Luckily B managed to get us a cuppa a few biscuits (it was all I could manage being so nervous) and we dealt with it. Next time, and there probably will be one or two as I face more surgery, we will be staying at Rydges or somewhere like that in the area.

      • Not allowed food!? Really? That does sound like a convent!!! A proper hotel next time sounds like a good plan – and surely it’s much healthier to be happy and comfortable the night before a surgery.

        • When we found the place on-line and I spoke to the lady who is the caretaker it sounded reasonable and I was grateful that we would be saving $200 a night to stay there…then when we arrived and sat in her office and she began to outline the ‘rules’ I had little alarm bells ringing…and when she said “no food in rooms but you can make a cuppa in our kitchen and take it up with you” I had big alarm bells ringing..but it was too late to go elsewhere. It was a fitting way (NOT) for us to spend our last night together. The lady kindly refunded B the amount for the nights he would have stayed as she understood he had decided to go stay at our daughters. The only reason we did not do that in the first place for him was that they live a good hour from the city and already have a full house..but she made room for her Dad and he found it better to go home to familiar faces in those first days. Once I was in my own room he went home and only came down each 2nd day.

  4. My aunt’s just finished several months of fortnightly chemotherapy and now on oral medication. I caught up with her last week and she’s really struggling with it all and I think she spirals through a range of emotions constantly. I’ve suggested she talk to someone, even her GP about how she’s feeling but she says it’s a generational thing that she doesn’t want to talk to anyone outside of the family…. but she’s also worried about burdening my uncle / her kids with her fears and thoughts.

    I think writing about this is really helpful. For you and others going through something similar Denyse.

    • Oh dear. I would be close-ish in age to her I guess. I think that it is sad when you cant share but I also understand it too. When my mum was dying (but we didn’t quite know that at the time) she would not see any of her friends or take phone calls. I think there is an element of being changed or ashamed. I must say I was pretty reluctant when my 4 grandkids wanted to come up and see me two weeks ago with their mum…but I needn’t have worried as they thought I looked great considering what I have been through.
      As I said to Vanessa above, I was/am somewhat reluctant to write about the cancer and what it means too much as I would rather people see that I remain interested in and passionate about other things too.
      I wont let it dominate me if I can help it. I hope even by you chatting to your aunt that it helped her somewhat.

      • I know what you mean about not wanting it to become your life / define / dominate you. After my weight loss surgery I set up an Instagram account to follow others who’d had the surgery but I realised many were really focussed on the surgery and their weight loss years later and I didn’t want to become more focussed on it than I already was.

        • I hear you on this matter exactly! I am not into joining groups much at all when I see that the purpose of some people is to not only ‘off-load’ but to make it a ‘competition’ of sorts about whose issue/illness is worst. I have much more in my life and I am grateful for that!!

  5. I am so glad you are writing out your experience & feelings, Denise. I am sure it will help! My thoughts & prayers are with you! ❤️

  6. Sometimes it seems when you get a diagnosis like that you are put on a treadmill concentrating on all the physical aspects of specialists appointments, tests, treatments, surgeries and you’re so busy concentrating on what happens next that the psychological needs are pushed aside and it’s only when you get a break in the physical treatment side of things the psychological needs come to the fore.That’s what I’ve experienced anyway but I know everyone is different.

    I’m glad that writing about this is helping you.

    • You do know what I am talking about/writing about then! Yes, it is so like this. In hospital especially where you barely have a minute to yourself with all the different personnel connected with care coming into the room. Once I was home, it felt different of course, and obviously at diagnosis time. I still find myself remembering “oh I have cancer” even though there is not further treatment other than months and months of healing and some more surgery to fix my mouth to take teeth. It is that sentence which can pull me back into the now reality.

  7. Cancer is a traumatic life event and will take just as much effort emotionally, if not more, as physically to recover from. Be gentle with yourself, Denyse. You’ve got this. And we have you.

    • Thank you D. Yes, for a while in the initial stages it was full-on, and then I had the awful waiting time (awful only because of the unknown of what was ahead and all the doubts and fears about the diagnosis and prognosis come up). Then to hospital where things happened and each day when the teams would visit me and compliment me on how I was going that built my psychological self right up. It has been on coming home and to a different role for me from when I left that it really does hit you. Yes. I have cancer and this has changed our lives for now. And for the next 5 years of check ups I guess. I feel incredibly grateful that I do not have to have chemo or radiotherapy. Thank you for your kind words.

  8. You have been through so much in such a short space of time, Denyse. Three months is nothing yet so much has happened. I can imagine it would be so hard to digest all of the information you’ve been given and the emotions that are swirling around. Keep on keeping on, Denyse. We are all behind you xx

    • You are so right. I think though that once I had an ‘answer’ to what was wrong it went some way to being a relief to know because I had been battling this awful growth (and smell and pain from it) since before Christmas. I am doing my best to let things out as I need to by having a weep here and there but I am also strengthening my self by being in charge again rather than all of the medical people having their say. I am finding the community nurse visits stressful because there have been 6 people for 9 visits and each has their own way and opinion…grrr. Just treat my leg and make sure it is OK I want to say!! Thank you for your loving wishes. Denyse xx

  9. Be kind to you Denyse, you are going through a lot right now xxx

  10. You are a brave, resilient, strong woman, Denyse. I know you probably don’t feel like that right now, but having the courage to acknowledge your very big feelings and spend time with them takes strength. I have absolutely no doubt that you will come out the other side of this with flying colours. Of course, the kite you’re flying will no doubt dip and crash every now and then. How could it not on such a big journey?!
    The most favourite advice I have received and practised in the last five years is this: know the season you’re in and respond appropriately.
    Take good care of you, the inside and the outside. Thanks for sharing how you’re travelling.

    • Thank you so much for your kind and most thoughtful words. I am taking charge of myself again…for a little while I had handed over decisions to others (medical people) but as of now, I am back with my own thoughts and ideas on how to manage myself as time goes on. Denyse x

  11. Denyse, unfortunately recovery is rough and bumpy road, filled with ups and downs. I totally get it. Be kind to yourself and shed some tears if you need to. You will get through it xx

    • Thank you Sarah, yes indeed it is a bumpy road but it is not unlike the road I have traveled with anxiety and through the transitions of life I have been experiencing since 2014. This is but another to add to the list but to take the skills I have now and remember to use them!!Denyse x

  12. I can relate to so much of this – getting a cancer is diagnosis is so surreal and there is so much to get one’s head around. I found that writing about my experiences was so cathartic – I hope it’s like that for you too. I think you have done brilliantly, emotionally and physically, but bumps in the road are to be expected and can always be overcome. I believe in you. Go gently xx

    • Thank you Sammie! You do write from a perspective that not everyone has and I value your words even more for that reason. I think there is not one prescription on how to live life with a cancer diagnosis but that there are tools which suit each of us individually and we use them to our advantage. I do find the writing helpful but do not want to be labelled ‘oh the cancer blogger’ which is why I am mindful to integrate my other aspects of life into the blog as I always have. Some people have told me that by writing here I may be helping someone else so that is something that I find comforting too. Warmest wishes, Denyse x

  13. Hi Denyse and just remember you have come so far in such a short time. This is a devastating experience you have been through and come out the other side. You need to go with the full gambit of emotions and I am sure blogging about it will be helping. Take care and have a beautiful day. xx

    • Yes that is spot-on and it has helped me to admit just how tough it has been to firstly understand I have cancer and then to go through what I did was pretty horrendous but I did. I need to give myself credit for how well my body is going. The mind catches up a bit later as I found out. Denyse x

  14. Denyse

    Thinking of you and I think it’s wonderful that you’ve been able to write so freely about what it’s been like for you from day to day. You are correct, it’s not always about asking for advice but the act of getting it all out helps a great deal in not feeling so alone.

    Much love

    SSG xxx

    • Thank you so much SSG. Yes, the ‘getting it out’ and admitting to the feelings goes a long way to helping me that is for sure. Better out than in! Denyse x

  15. I find your writing so honest Denyse – the ups and the downs. So many people try to gloss over it and I think that’s when it hits them later down the track. It’s a huge life changing event and you need to allow it to filter through on all levels. I still think you’re doing amazingly well and you are an inspiration to those who will have to fight the good fight later down the track.

    • Oh Leanne that is so kind of you to say. I did think long and hard about whether to go down this track but it would have been somewhat ‘dishonest’ of me not to. My husband did a first read of what I wrote and when he could see no problem with it, I went along and pressed ‘publish.’ It has been the comments of people such as yourself that have helped me to know that my telling this truth may indeed help others. Denyse x

  16. Denyse you are so brave to so honestly express how you are feeling at each stage through this process. I am not surprised that the reality of what you’ve been through and are going through has now caught up with you. You’ve been so incredibly brave and positive but most likely in survival mode knowing that you had to do what had to be done and only now are your emotions catching up. It IS a big thing and a very confronting thing. I think how you are feeling is perfectly normal and to be expected. I still think you are incredibly strong and brave and inspiring. Big hugs for you! You’re doing so well. p.s. hope your IBS settles down very soon! xoxo #TeamLovinLife

    • Thanks so much Min. I am also glad I have the wisdom to draw upon what I had learned from my psychologist about feelings taking a longer time to catch up with us that actions. The IBS and my continued challenges there have been not going so well (and that annoys me!!) but as my GP said yesterday ‘your gut was stripped of everything for almost 10 days in hospital where you were on anti-bilotics and not eating, then you came home and again had to have antibiotics so it take some time for the gut to get back to some semblance of normal (for me)’ So I am hanging onto the for now and allowing time to do its thing.! Denyse x

  17. Denyse I cannot even contemplate the enormity of what you have been through. What a mammoth journey from diagnosis to surgery and then to recovery. I have people close to me that have been through cancer, some are still here and others, sadly not. I really don’t know how I would react to a cancer diagnosis. Maybe I would feel numb like you did. I think you have handled it particularly well and yes writing stuff down does make it a bit more plausible. I wish you well and I think you have shown a lot of courage and dignity in sharing your journey. #TeamLovinLife

    • Thank you Kathy. I guess none of us do know how we might handle something pretty traumatic or shocking until it occurs. I know that whilst my news was a shock, it did not come as a surprise in some ways as no-one in the dental field could work out what my gums were doing. Still, I will never ever forget the words from my oral surgeon and the fact that I was alone for the first hour after hearing about it. However, I am almost 3 months away from that day now and have conquered more fears so it is in its own way giving me the strength to get on with what I need to do to get well. Mind you I have ranty/crying days but I am lucky I can bring myself out of them pretty fast using some of my mindfulness things and having a great husband who helps me meet the issues head on or helps me test their truth. Denyse x

  18. I’ve just started watching Pulse on the ABC. In the 1st episode, the young doctor is talking to a patient who’s just been diagnosed with a severe heart disease & needs a transplant. The senior doctor pulls her aside and tells her not to discuss her options with her. ‘She can’t hear you,’ he said. ‘She’s numb. This will sink in later.’ And, of course, it does. You’ve been through so much and your blogging/journalling helps both you rationalise it – & others too. I admire your dignity. #TeamLovinLife

    • Thank you Joanne, that is most kind of you to say. I was somewhat numb in the early days but of course would think of things I wanted to know more about later. I was fortunate to have the associate professor write back to me after I emailed him many questions and I have often gone back to this conversation to remind myself of what he said re recovery and so on. One doctor who was part of the professor’s team told me on my 2nd morning in ICU (where I was still in shock from the surgery!) that I would be facing more surgery after this. I ‘freaked out’ inside. I told her what the effect was on one of her visits to me when I was in a room on the ward and she took it well and thanked me for the feedback. I thought that was gracious. She will hopefully not ‘drop’ more news onto a patient’s plate until they are in a place to manage it.

  19. Thank you so much for having the courage to share your experiences both emotional and physical as you come to terms with your diagnosis, this major surgery and the knowledge of what is to come. The physical happenings we just do what needs to be done and it’s not until we are out of the medical environment and back in our own surroundings that we can fully comprehend the enormity of what has happened and the impact it will have on life for the next while. Be kind to yourself, do as little or as much as you feel like doing and in time your emotional state will find balance once again. Jenni xxx

    • Yes you are so right Jenni. I did recover physically extremely well and my mood was one of relief that is for sure. However, once home and 2 hours away from the familiarity of the hospital and doctors and nurses it was a wee bit more scary. Lucky for me (and my hub) we have a wonderful and reassuring GP who has helped me greatly with reassurance and always tells me “you are doing extremely well”. I told him last week that I think blogging about it is helping me too. Thank you for your kind words. Denyse x

  20. Sending the biggest hugs! I think you’re wonderful to share your emotions with us all and relate to. So many of us have experienced cancer in some degree. For me it was both my parents over 20 years ago – sadly only my Mum survived. I recall they both disliked that cancer smell too. Because both my parents have had cancer I always prepare myself mentally it could happen to me, but every doctor I’ve had said the chances are very unlikely but I’ve always been a worse case scenario kinda girl. It’s like a protective shell I hide behind. Keep going strong Denise. I bet you’re surrounded with tonnes of love from family and friends, and love from your internet buddies as well. Rest up lovely xox

  21. I wish I had words of comfort for you Denyse. But there is nothing any of us can say to take away the fear and uncertainty. Be present with it, and know that we are all sending you love, light, and peace. May you gain some strength from knowing this. xxx

    • Thank you Jo, just reading those words are indeed a comfort. I have been taken by the ways in which people who I may not ‘know’ are helping me through this. It’s a small world were we can reach out and help another I believe. Denyse x

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

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