Wednesday 18th October 2017

Courage, Exposure Challenges & Me. Part Two. 2017.112.

Courage, Exposure Challenges & Me. Part Two. 2017.112.

Last week I wrote Part One here. Thank you to those who responded both with understanding and familiarity. I loved reading your comments.

April turns into May 2017.

This was a good time in my life as I relished the fact that I had achieved something pretty major for me. I had come through the dental extractions and subsequent follow up, been to see my Dad in Sydney and told myself that I was doing well. Confidence grew somewhat. It was good. BUT. There has to be a but as things were not going right in terms of what the dentist and I had hoped once the front teeth were removed. The gums were worsening. In the 5 weeks of recovering I did all I was told to do, I mouth-washed and took care as I knew I should after a major extraction. But I knew things were not good. Yet no-one could actually work out what it was even with this visit to my GP and then scans and X-rays and a return visit to the dentist then the oral surgeon. The full story is here. I will continue the topic for this post which is about how I used courage and challenges to get me through. 

These photos are some I took as I reflected on the news that I had cancer in my gums Whilst I was not surprised to know there was something sinister wrong, I still had many times of ‘shock’. Anyway, it seems that I did know best how to care for me and going out and about into nature helped.

Diagnosis and Consultations.

Diagnosis on 17th May in the morning, appointment with the Head and Neck surgeons the next day and ….O.M.G. from me. How will I do this? I need to have some help. On the afternoon of 17th May our lovely (and somewhat shocked by my news GP) reassured me that I should ‘take the valium, the immodium, put the headphones on…you can do it’. The travel to Sydney with my husband driving had, interestingly enough, escalated my fears about IBS and travel MORE than having been told I had cancer. I know. I think about this a lot.

BUT. I did it. How? Exactly as the doctor said and using my knowledge that this HAD to be done and my husband assured me of his driving and preparation to stop at any time I needed to. He was brilliant. I used my hypnotherapy on my iPhone via my ear buds and closed my eyes and we stopped at 4 loo stops on the afternoon of travel. I was OK. NO I.B.S. either.

The story of what happened following that day and visiting the dental clinic in Westmead  is also here.

Blogging Really Helped Me Voice My Fears Too. June to July 2017.

To continue to prepare myself for what was ahead once surgery was confirmed I did a lot of ‘what if’ scenarios which might be silly for some people but for me they gave me information and prediction. Rather than me doing guess work I had more formed and experienced views. My confidence that I was in the best place and with the best people once I had the surgery was confirmed when the Associate Professor wrote responses to my many questions about what was ahead. It then gave me knowledge and my GP was also someone I could chat to. The courage grew. But there were days (and nights of course!) when I was fragile. I include the excerpts here from a blog post I did in the week before surgery and I am now responding in purple italics about how things went that I had been concerned about!

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 may have felt like hiding but I did not. I certainly honour those feelings though as they are actually pretty normal and not exclusive to me.

I am shit-scared right now.

Again, I know this is normal. ‘Normalising’ the cancer diagnosis and what it would mean for me helped to change my thoughts. 

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. 

This was helpful and much better for me to have the fears spoken about, and written too so that I could see them and read them knowing that I was admitting to them and not running away from them or denying them. In fact my GP gave me praise for acting this way as he said it was much healthier in the long-term than holding it in and acting as if nothing unusual was occurring.

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.

Interesting for me that these things about that I feared did happen but I was in a less fearful place once the surgery was done. I did not like the feeling of the feeding tube when the liquid would start its hourly thing but I ended up telling myself it would be over in a minute or so and that the nourishment was helping me heal before I could eat again. It worked! 

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.

Better ‘in than out’ and this is why writing this post and the one containing these quotes has helped me. I have talked about the loss of control before and we humans are all like that. So, in a way, I shared a very human response rather than a ‘unique to Denyse’ one and so in one way, I was giving loving-kindness in thoughts to more than me but to anyone else fearing loss of control. 

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.

Yes, the loss of my smile seemed very important then and to an extent remains so but, as I have found as my mouth swelling reduced that my smile (sans top lip) is still there and in fact, smiling with my eyes has never disappeared. I will be more secure once I have teeth again of course and a lip too but for now, I am appreciative of the smiling coming from the inside too! 

August, September and onwards into October 2017.

Now I am feeling more courageous and in control of my reactions and responses I can consider what lies ahead with great equanimity and no longer feel the need to have everything right before I do things. In one week from now we will be on our way back to Chris O’Brien Lifehouse to see Professor Clarke for my 3 month check. It is interesting that I can be a little bit apprehensive about what is ahead but also curious about it too. I shall report back!!

I hope that reading my story about what I have had to do to change some of the hard-wired thoughts and feelings of mine to get better and to do well has been helpful. Avoidance is a short-term fix and the more we avoid, the worse it becomes as I found out. See Part One. By doing something fearful it helped re-train my behaviours and therefore added feelings and memories of success in overcoming many of the fears – real and imagined. Of course support from my professionals and my husband was another key to progress.

Tell me your thoughts!

Denyse.

Linking on Tuesdays with Kylie for I Blog On Tuesdays and with Leanne on Thursdays for Lovin’ Life.

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Comments

  1. I think you showed amazing strength and resilience throughout it. And I think part of that is having sobbing in the corner moments! I can’t believe it was three months ago nearly, that’s amazing.

    • Thanks Vanessa that is very kind. I am ‘living’ with it so the time seems to be going slowly in some ways as I feel like I have been like this all year. I guess in some ways I have but I just didn’t know it was cancer till mid May! D xx

  2. You have shown such amazing courage and strength Denyse. It’s lovely to see how well your looking in your recent photo.

    • Thank you Beck, I do not feel I have done anything differently to others in similar circumstances but I guess what I have learned is that we never know how we may handle what is thrust into our lives until it is. Yes, feeling better too as in the last photo. D xx

  3. You have shown such courage and strength and that shines through not just in your words but in your pictures. I can relate to those fears and how writing them down helped you to address them. For me, the thought of what was going to happen re my surgery and treatment was much worse than the reality of when it happened. The physical experience was not nearly as bad as I had imagined it would be, and the relief of that feeling plus the feeling of another hurdle overcome was palpable. I think it would be strange if you didn’t feel a bit anxious about your 3 month check up but I have no doubt that you’ll walk out of the office with a gold star (or two!)

    • Thanks Sammie, yes I think afterwards probably surprised me a bit too. Mind you, the limitations were quite hard to put up with but then again I found out for myself how I could do this and that and..yep, got on with things. I will find out on Tuesday what the Prof thinks of how things are going I guess. I have no idea…but will wait and see what he has planned next. And when. I am geared up mentally for more surgery and shall be interested in what that will entail. And, I have a small batch off cupcakes for the practice manager to share with the surgeons if she wants!! She has been delightful once we got to know each other when I was first in hospital. She even visited for a chat and see how I was going! Said she is looking forward to catching up with me next week. Nice!!

  4. I can see how sharing your fears via blogging, would be so very helpful. I think any fear shared is a fear halved. I truly admire the strength you have shown. I am excited for good news next week after your check up. xxx

    • Thank you Nicole, it is true. Who knew that when I began blogging on a more personal level it would end up being about cancer. Not me! Anyway I love and appreciate everyone’s support and yes, will report back after Tuesday’s visit to the professor!! D xx

  5. We will all be thinking of you for your 3 month check, Denyse. I am keeping everything crossed that all will be okay. You just blow me away with our strong you are. Your ability to find the positives in something so difficult is inspirational. Big hugs to you.

    • Thanks so much Renee. I am not fearful of any more cancer news as the surgeons were very positive it was gone when I spoke to them last. What is ahead is more surgery to get my mouth sorted for future teeth to be added to the implants in my ‘new jaw’. I suspect I will be hearing about months and months of waiting (for healing) then visiting Sydney for the oral restoration well into next year. BUT..if I don’t have any cancer to worry about then I can do my best to be patient, right? D xx

  6. Well done Denyse you have had to face so much this year and you have faced it with extreme courage and dignity.

    • Oh thank you. I just do what I know I need to do but gee whiz if it takes cancer to get me going, then I accept it. I appreciate you popping in to say g’day too!! D x

  7. Thanks so much for sharing. Courage is sharing your voice and vulnerability when times are tough, and know that your story will help others. Hope the next appointment goes well.

    • Thank you Ashleigh. Your words are most kind and I do write to help myself and if the words resonate with others then that is a blogging bonus. I appreciate you commenting here for the first time too! Denyse.

  8. Hi Denyse I am so sorry to read you have been through so much over the last three months. Reading your words I see incredible strength and determination. Long may that continue for you.

    • Thank you so very much. I am touched by your kind words and I am delighted you popped in to comment as well. Blogging is a great way for me to express what is going on in a safe and supported environment. Denyse.

  9. I think you have shown incredible grace, courage and honesty throughout this ordeal. Documenting your feelings can only be helpful for others, even though it must have at times been so painful for you. I wish you much strength during recovery 🙂

    • Thank you Jo. I had some friends visit yesterday and in re-telling my story I felt that I probably had the worst time leading up to surgery. Anticipation is always full of ‘what ifs’ and ‘worries’. Knowing that my cancer is most likely gone and that the treatment is long because of healing and more surgery is better in my mind than knowing there is radiation therapy or chemo ahead of me, so I am grateful for this. xx

  10. I have just finished reading both Part One and Two blog posts and the courage and strength you have had to get through all of this – diagnosis, operation, anxiety, fear – is amazing Denyse. I truly hope all goes well at your three month check next week. #teamIBOT

    • Thanks so much Erika. I was one scared lady for the past 2 years about all sorts of things but this cancer diagnosis topped them all …yet I HAD to learn to overcome some of the fears which I had let build up over time. The mind is a mysterious and sometimes not nice place! When I did overcome some of the barriers I had placed for myself it felt and still feels great so i highly recommend it to anyone to ‘give it a go’. I am feeling good about next week but there is an element of the unknown so i shall be a teensy bit apprehensive but nothing like I used to be!! D xx

  11. You are a brave lady Denyse, no doubt about it.

  12. As you know, I’ve been really inspired by how you’ve taken this ‘journey’ Denyse. I’ve loved your honesty and fact you’ve shared your fears and sometimes had to force yourself to be brave.

    I also really love that you’ve been able to reflect on your thoughts and concerns (after) above and your additional comments are really interesting. I don’t do that enough, but know when I’ve kept a diary and been able to write about my fears and thoughts and then revisited them later it’s been interesting to see how things did or didn’t work out as I thought or the things I worried about didn’t come to fruition etc… xx

    • Thanks so much Deb for taking the time to respond with such detail. I do write most evenings in a diary App as I gain perspective when I too look back. I so would not want to re-live many of the times but it shows me that I have ‘survived’ and ‘thrived’ and is a place for me to reflect. I am glad I do it even though when I remember I am tired!!

      These days I cannot trust myself to remember from one day to the next what went on mostly I guess because many are the same in activity but in subtle ways they are different. It’s another reason why I post pics of myself (& I also did this with the wounds on my leg as it helped me KNOW the healing was happening!!) and I kept a record in a calendar/journal from date of diagnosis until mid August when essentially I had most of my independence back.

      Diaries sure do have their place, as does the blog.

      I hope your week has gone as well as it could. Nearly there! Denyse x

  13. Denyse you’ve been so generous in sharing your thoughts and emotions through this whole ‘journey’ you’re on. You may not realise it but it is so helpful to others that might be on a similar path so that they don’t feel so alone. It’s helpful to others too so that they might better understand the emotional journey that a cancer diagnosis can be. You are very inspirational and brave – even though I know you may not feel it at times. I’m so glad that blogging has been a comfort to you during this. I hope things go really well for you at your 3 month check up. xo #TeamLovinLife

    • Thank you very much Min. Your words are kind, thoughtful and comforting. I am very proud of overcoming most if not all of the fears that stopped me ‘living the life i wanted to’ in the past 12 months or so. I know I have done a lot of internal work for that to occur as well as be guided by some wise people on CD and in person but still I WAS the one who had to give it all a go and then build upon that. It continues and is going exceedingly well. So good in fact I am planning a trip to Canberra for the autumn leaves and hope to see some blogging friends too. A year ago I could not envisage that even though I “wanted to”.
      You are a wonderful supporter. Thanks once more! Denyse xx

  14. Thank you for continuing to share your experience with such honesty, Denyse. I do agree with you about how avoidance makes many things worse in the end.

    Much love

    SSG xxx

    • Thank you SSG. It does make things worse and I think I allowed myself to be fearful for too long. Glad I have been able to see those fears for what they were and just do it anyway! Denyse xx

  15. I was reading the comments above thinking ‘I want to write that,’ and ‘I want to write that too.’ For me you have shown grace, a generosity of spirit and inner strength – qualities that I’m sure wouldn’t have surprised anyone who loves you 🙂

    • Thank you Jo! It is very kind of people who come here and lift me with their comments. I am truly humbled and it makes me glad to be friends with people I may not have met IRL but are already that thanks to blogging and on-line catch ups. Denyse xx

  16. You are an amazingly strong woman Denyse. Opening your heart and soul to others, sharing your honest experiences with us as you go through what is probably the hardest time in your life is such a brave thing to do. Best wishes for next week. Jenni xxx

    • Thank you very much Jenni. It has actually taken getting cancer to realise the strength I had. I have been, over the past few years, allowing fear and stress to overtake my life. I did not like it but I felt ‘powerless’ in some instances. Anyway, the best thing now is how much I am learning about what I do have and I am going very well indeed. I shall report back after next Tuesday! D xx

  17. It’s amazing what a huge challenge like cancer can do to lift a person’s courage. You have the strength of a lioness Denyse. I feel as though you are stronger now than you’ve ever been. At least it seems that way through your writing. I need some of your strength right now. My resilience has been wavering of late. #teamlovinlife

    • Thank you Leanne, I was just chatting to my husband then about the significant changes that have been made in my outlook and behaviour as I HAD to face these challenges. The good news that each time I have achieved one, it ‘sticks’ and reminds me that I can do it.

      I can understand for you how your resilience may be wavering as the HUGE life shifts happening within your family and likely within yourself do leave us unsteady. In fact, we LONG for the times of old but they aren’t coming back.

      I would offer this: time for Leanne is essential and time to just ‘be’ rather than do and use kindness as your guide. Be as kind to you as you would to another.

      Thinking of you as you do appear to be the one ‘holding’ a lot of family and other matters up all by yourself. Denyse xx

  18. Denyse, what a journey and how much you are learning along the way. My heart really goes out to you. Thanks for sharing your story x

    • Thank you for your kind words. I know that by sharing I feel better because it’s out of my head and if it helps others, then that is a win too. Denyse x

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