Monday 18th December 2017

Archives for Tuesday 3rd 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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