Tuesday 24th 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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Courage, Exposure Challenges & Me. Part One. 2017.110.

Courage, Exposure Challenges & Me. Part One. 2017.110.

Background.

I have mentioned a while back here on the blog that for quite some time, IBS, fear of having to find a loo quickly, anxiety about travelling on the M1 to Sydney were all contributing to a heightened sense of anxiety and worry. So much so, that I found it stressful to have family here to visit and resisted entertaining people. This was further exacerbated very early in 2017 when some very hot days in NSW, seeing a HUGE line of cars which could not move on the M1 because of a major accident and my mind immediately imaging what it be like for me to even contemplate such a happening that I literally and figuratively FROZE with fear. My planned visit to my father’s in Sydney for his birthday in early January was cancelled. By me. Crying, sad and fearful me. I felt so guilty but I also felt incredibly relieved. Interesting!

What is exposure therapy, or as I like to call it ‘personal challenges’?

Here is some information:

Exposure therapy is often essential if you are to overcome your anxiety disorder. The cognitive behavioural treatment of  conditions such as: panic with agoraphobia, simple phobias, social anxiety, obsessive compulsive disorder and post traumatic stress usually entails an exposure component.That is, you must subject yourself to the situations you are worried about in order to beat anxiety.
Although this sounds frightening, your therapist will give you the tools to cope with confronting your fears (e.g. rational thinking, slow breathing and isometric relaxation).

The guidelines for exposure therapy are that the sessions must be
* graded
* repeated and regular
* prolonged

Graded:
 Your therapist will work with you to determine what would be an appropriate first step; it should be difficult enough to provoke some fear but easy enough for you to be fairly confident you can do it. Once you can cope with Step 1 confidently, then you can move onto a more difficult situation and gradually work up your most feared scenarios.

Source: http://www.anxietyaustralia.com.au/exposure-therapy/

Shortly after my decision not to drive to see Dad, I summoned up enough courage to keep my next Psychologist appointment after I had been to my lovely GP to tell her what had happened. Rationally I knew what I was doing and feeling was not helping me but I could not escape from the rope fear and anxiety had wound around me. I also was NOT diagnosed with an anxiety disorder nor was I depressed but my behaviours and resistance to trying the challenge myself were making me (and I guess those who loved me) a bit frustrated but kindly not showing it much! I resisted even though I would tell my professionals I would give the exposure ideas a go in a graded sense it never seemed to me anyway, to be enough.

Some of the ways I was ‘convincing myself’ that things were going well. Deep down, I knew they needed to be better and only I could change that.

My Personal Challenges Getting Me Started. 

Recently I have been listening to Brene Brown on her Rising Strong – A Spiritual Practice CD and she talks of the stories we tell ourselves because our brain wants us to be rewarded with a shot of dopamine when we work out the story to fit the situation. It does not, however, mean that having that story makes you better or right. It IS just a story. I know I was telling myself many stories back in January to March. I know that they were wrong too but I could not even see myself being able to move further along the exposure challenge way. Until I HAD to.

Early April 2017. The BIG challenge after a few smaller but important ones.

It is no secret to readers here and Facebook followers and friends and family that my teeth, notably my upper jaw and gums had been giving me hell for about 8 months to this point. After some nervous but successfully personal challenges – driving on M1 to the Dentist, discussing what treatment I would need and back and forth, I faced 6th April. The day my hub would drive me to the dentist for a 1.5 hour extraction of both the bridge holding my 5 front teeth and the teeth themselves. I cannot lie that I was not scared. Not about the procedure actually but about whether my stress levels about IBS and worry of IBS would escalate. On the advice of our new then GP, I had valium and meds to counter any fears of IBS and with my hub taking me and staying in the same room with me, and listening to a CD of relaxation, I came through the biggest challenge I had to date.

How That One Event Helped Me Go to Sydney.

I drove home, alongside my caring husband, congratulating myself for having the courage to go beyond my fears and as it is said, do it anyway. I recuperated with relative ease and drove back by myself to the dentist after a week in a more relaxed and calm manner. It felt so good!  Then the so-called bigger challenge (exposure therapy-wise) was for me to drive to Sydney to see Dad. I do have to explain that it was because of ME I had to do this, not because of any pressure from him. He just wanted me to feel well and be less anxious. I did that drive, caught up with him, took him some meals and felt very pleased to have met the challenge!

So, there I went. Going well…but there was more, waiting around the corner…as regular readers know but I will continue next week!

Part Two Comes Next Week. 

Have you had anxiety or fears about doing some things in your life?

Have you overcome them?

Tell us about this.

Thank you for sharing!

I believe it IS important to share.

Denyse.

 

Joining with two blogging friends’ link-ups: Kylie here who hosts I Blog On Tuesdays and Leanne here who hosts Lovin’ Life each Thursday.

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Cancer and Me Four Months On. 2017.108.

Cancer and Me Four Months On. 2017.108.

Really? It’s been four months since I found out that cancer was in my mouth….and by this Thursday coming, 11 weeks since it was removed. Oh. Then that has  gone both fast and slow!

I did say I wasn’t going to have cancer at the centre of my blogging but I cannot deny that it’s there/here/everywhere around us. My community nurse who visits each week to change and check on my leg wounds’ dressings has cancer. Hers is breast cancer. I know of on-line friends recently diagnosed too and one, very sadly, who has passed away. And the country was saddened to see the recent death to cancer of Connie Johnson from LoveYourSister.

CANCER.

I don’t use the ‘f’ word in front of it though. Many do with the #f…cancer. It’s just not me.

Today though  I am actually wanting to share the lessons having cancer has taught me. I am not going too ‘woo woo’ or having had a new experience from beyond. But it’s true.

Having cancer has taught me these 10 lessons:

  • I am not alone in getting a rare cancer and a most unusual one like mine …even if I did  know that someone else has had it might make a difference. The point I am making is I am not special”.
  • The surgeons know more about how to fix me than I do so I am better leaving things in their capable hands rather than trying to control where my cancer is taking me.
  • About kindness. Of strangers. Of friends. Of people I may only see a few times. So. Many. Kind. Words & Deeds. I am forever grateful.
  • When I need to be, I can be patient and wait. This is a huge life lesson for the previously still  impatient moi!
  • I have more inner strength and resilience than I have previously given myself credit for. It has made a psychological shift in me that has been noticed by those closest to me and the professionals I see more frequently such as my GP and psychologist. I am going well in so many ways, I can see & feel that now. 
  • To appreciate the little things in life. Sunshine on a day where I can go outside and soak up some vitamin D. A warm bed after an early shower (my husband still needs to help by sealing my right leg in a plastic bag. Time to talk. To my husband and to friends who call.
  • My creativity and independence give me great strength each day as I endeavour to feed myself for healing, wellness and enjoyment. It IS a challenge but now I am on my own two feet and fit to cook, I enjoy making meals for someone (moi!)  who has 8 teeth on the bottom jaw and a strong tongue. The rest…is attitude and being aware of how I can eat safely.
  • I can be calm about what is ahead because I am fortunate enough to be able to know (within a small likelihood) that my cancer is unlikely to metastasise.
  • What I face in the next 6-12 months is to get my mouth ‘fixed’ from the inside. I do trust my surgical and dental team 100% that their goal is for me to be cancer free (check!) and back to eating as I might have in the past (on the way) and to have my full smile back (it is half at the moment).
  • Every day is a gift and I need to be more in the present than I have ever been in my whole life. I am a work-in-progress in this as I often spent times in the past (regrets, sadness) and projecting into the future. I know that the only moment we have is NOW. 

What About You?

None of us have to have cancer to consider making life changes. Some of the last 2 years I had been on my way using daily meditation, creative arts and reading & doing on-line courses to better understand the various life transitions that were mine. Retirement. Ageing. Leaving Family. Selling Our House.

What do you do to help yourself?

Thank you to my readers here who have continued to be wonderful supporters and friends of mine as I continue to journey. I am buoyed by your care and words on-line whenever we connect!

Denyse.

Joining with Kylie Purtell (who is cruising along right now!) for I Blog on Tuesdays here and with Leanne here for Lovin’ Life Linky on Thursdays.

 

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15 Years Ago & Now. 2017.104.

15 Years Ago & Now. 2017.104.

Fifteen Years Ago.

As I have written before, and is part of my bio, I was a K-6 School Principal in a N.S.W. Public School from 1999-2003. Before then I had been a relieving principal in two schools from 1994-1998. In 1999 I was appointed, by merit selection, to this school. The brief, once I was appointed, from my boss, the District Superintendent was “Denyse, I want you to bring this school into the 21st Century.” He was correct in that. It certainly was stuck back in probably an era two decades earlier. When I began in January 1999, replacing the former principal who died in the September school holidays earlier, I literally had to start the school’s organisation and planning from scratch. Why? Because the person I replaced trusted no-one and kept all leadership matters to himself,  and died with all the school passwords and information for getting things up and running. I took over a mess.

But I love a challenge and there were some good people who wanted to come along on this journey into the century we were on the cusp of entering. The school executive team was keen and wanted to learn more and  I could definitely help them with this and we formed a good group. Until the end of that first year. It really was a change that I could not stop and is part of what happens in school systems anyway but it made my job more challenging for sure. The school was unique in the area at that time with: mainstream classes, a special education unit of 3 classes, 2 O.C. (gifted and talented) classes and an Autism Satellite Class. Two of the people who were part of the executive team sought and got promotions elsewhere. Yes. I would encourage that of course. However, it left a hole for a bit which I was able to carry myself until I could get some new staff appointed.

Over the next 2 years however, this plan started to waiver. I had appointed a person to an executive role who was not up to the role. I take responsibility for that but it was a most unpleasant time as his continued absence from school due to ‘illness’ meant I had parents (and some teachers) calling for action. In the end, my district superintendent moved this person on and I could fill the role internally. I was relieved for a little while but then my best and most competent person in my team had to leave to have her first child. This was lovely for her and her husband and I wished her well. The remaining executive member who was my age decided to take Long Service Leave for the remainder of the year.

This meant I had NO fully qualified person holding an executive role in my very busy and varied school community.  But what did I do? I appointed people who were staff members who said they would like to learn more about the role and support the school  by taking on relieving roles for the remainder of 2002. This worked in some ways but I needed to take on more of their responsibilities myself or guide them step by step. It was as if I was doing multiple roles. I could sense how much I had taken on in June that year when I ended up writing a casual teacher’s class reports!

 

I did not know what this was doing to my mental health although I probably should have read the signs. I sought time out from the school to attend meetings and to meet with colleagues but at NO TIME did I actually tell my boss what it was like for me. In fact, I had said farewell to the District Superintendent who’d appointed me at his retirement and he was replaced by someone in an acting position. And, it still is the same now, a principal is meant to handle anything and everything that comes up. Well. Maybe in 2017 there might be greater awareness of principals’ mental health but not when I was becoming unwell. Even though I did not know it. I can look back now and see I was quick to anger and showed my displeasure when people did not comply because of their own incompetencies or my ‘view’ of how they should behave in the role. This led to….the following:

On a September evening in 2002 I received a telephone call at home from one of my relieving executive staff. She told me that there would be a delegation of staff coming to me the next day to make a complaint about my manner and behaviour. She said they had contacted our union and that person would be at the school. She also said that there was a rumour it was because of me that the school population was declining and that as that would mean at least one staff member would have to be transferred then I needed to step up. I could and did dispute this as the reason as schools’ populations change for a variety of reasons but instead I reacted personally.

This sure was a bolt out of the blue. But then again, I actually could see how my behaviour had changed and recognised that I was fast losing my grip on being a leader. Within moments of the conversation ending, and letting my husband know what had occurred I broke down. In tears and physical distress I knew I had to protect my health/self and I could NOT face such a meeting. I could not reach my boss and had to wait till the next day. I did not sleep and went to my G.P. as soon as I could that morning. It was very unlike me not to continue to be at work.

That day, 4th September 2002, she declared that I was suffering from anxiety and depression  due to work overload and that she would start the process of a work cover application.

I never went back to that school, that role or saw anyone other than my boss and the local district HR staff again. It was final and I NEVER  could have seen me, a competent and dedicated teacher, finishing my career JUST.LIKE.THAT.

Now.

So much time has passed and yet this time of 15 years ago remains very clear. It is imprinted upon my mind as ‘the time when I failed to do the job I was appointed for‘. Then again  as was  the culture of the time it meant I could not share how I was managing with anyone. Mental health management  in the workplace is hopefully becoming more recognised but there is still a huge stigma attached and shame as well. My shame is decreasing each time I tell my story. It did take courage for me to start to tell my story a few years ago because I did not want to admit my so-called ‘failings‘ as a school principal. I am the one who labelled these, no-0ne else.

The upshot of what happened to me impacts me still in some ways. I did have the claim for workcover met and was paid accordingly. However, as in all workcover matters many steps need to be followed as the recipient and these include ‘return to work’ plans. I simply could not do that. My GP was adamant that I NEVER return to that school nor to the role of principal. Interestingly when I was first on leave I could not even attend my grandchild’s school without a great deal of fear and anxiety.

I was treated by more than my GP. I had to attend meetings with my employer and work cover and to see a psychiatrist and psychologist but what they all wanted me to do I could not. I could not even drive on the road that would lead me to my old school. I was scared!

If I knew what I know now about myself I think I may have been prepared to expose myself to the experience of coming to work at the local district office instead of refusing (avoiding) because I felt such fear and shame. I also think with the knowledge I have now about my mental toughness and resilience that I could have stayed employed.

But no, as I found in early 2003, I HAD to resign my role and give up any rights so that I could, hopefully gain my superannuation lump sum. I was in a scheme which did not medically retire (sadly I had taken myself out of that scheme when we were first married) so the action was to leave under circumstances that were never envisaged by me. Then came an even tougher time when the Superannuation people interrogated me and tested me and declared I was fit and able to return to work. This was disputed by my medical team and it took the lawyers from my union (free for me) to gain my benefit.

For all of 2003 I took time out to explore my creative side, I volunteered at the Smith Family and I met with friends for coffee. I had many appointments to continue my self-styled rehabilitation after I declined to take part in any more of the WorkCover requirements. In early 2004 I needed more. I needed to be with people again and to teach!

There was much more that was good to happen to me from May 2004 onwards which I did for myself by returning to a teaching role in friend’s school and having no executive responsibilities. I was happily engaged in that work from 2004-2009 and had to be careful to not take on too much as I was only to work part-time. But I got my sense of being a teacher again.

So why tell this story?

The stories relating to stress, work overload and anxiety in the workplace need to be shared widely. I now know my personality  type and management style is that I need to be sure of things and want things to be done well and correctly. This was not happening in 2002 but I also held onto the notion that a principal deals with everything without telling the boss how it actually is. I have wondered how it may have worked if I had had the courage to tell someone. I did not even tell my husband.  I became unwell mentally and emotionally because I did not reach out to others and when I was finally diagnosed I was not to return to the workplace. I wonder now, if maybe things could have worked out better for me if I had the resilience I have today.

But we shall never know. I hope that by telling this story I could encourage others to speak up and share if the workload is too much. Tell someone. I know I should have.

Does anything here ring true for you or someone you know?

Denyse.

Joining in with Kylie Purtell here for I Blog On Tuesdays and with Leanne here for her Lovin’ Life Linky on Thursdays.

 

 

 

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Reality Bites. Part Two. 2017.100.

Reality Bites. Part Two. 2017.100.

So a few weeks back I wrote here about ‘reality biting’ from the emotional health perspective as it started to over shadow my physical recovery. It is true that as I said back then our feelings can take longer to catch up with us. In some ways a more gentle and regular pattern of life has taken place since then and life is pretty good!

However, there have been some more moments and events where reality has bitten and I outline them here:

  • I am finding it  a challenge most days to ‘like’ the face…i.e. the mouth I see which is shrunken and ‘old lady with no teeth in’ look. Oh wait. That IS me. Old(ish!) lady with no teeth ..at the top. However, I saw myself in a photo and it’s not pretty. I am vain! I guess we all like to think we present a reasonable face to anyone. It will happen! You know it will…just going to be a few months yet.
  • I am feeling luckier as time goes on that my cancer does appear to have been isolated in that one place in my mouth but IF I let my imaginative thoughts take over I anticipate more cancer in my future. Note to self: remember mindfulness and living for today
  • I am hungry and wanting to eat from a nutrition and enjoyable perspective but I am very limited by foods which require virtually no chewing and can be swallowed with no chance of choking. Oops: I remember this well when I ‘try’ to eat some small pieces of cooked chicken within a soup I have blended and I manage not to choke but to remember that I cannot chew. Note well…OK? Sigh.
  • I have a great desire to have the rest of this year on fast forward to the days when I can eat well and without much restriction but that’s not going to happen. I was reminded of this limitation again when I did my first mini supermarket shop last week and had to say to myself: can’t have chips, can’t have meat, can’t have ANY thing that is hard, crunchy or needs chewing. In 2018 this will be different. Be patient ..LOL.

I posted this photo recently and had so many positive comments about my appearance. For a while though I wondered why I felt defensive about my loss of weight because it has not been intentional. I feel I have to justify my weight loss (over 3+years) because it did come at a ‘cost’ thanks to anxiety and IBS. But..I reflected on this too because for the many years I was very overweight I was using food as a comfort. My slow and gradual weight loss has made me realise that in many ways it has also helped me to feel more content at this size and I am certainly more physically comfortable and I think my recovery was assisted by me being this size.

But you know what I do actually say to myself now?

  • I am so fortunate to have recovered well from a MOST major and complex surgery where part of my leg was made to fit into my upper part of my mouth to give me, over time, teeth and gums and a S M I L E to be proud of.
  • I have the best support person in the world…who is also incredibly patient with this ex-patient…and that of course is my husband who I paid tribute to here.
  • I have my 100% independence back now. I can look after myself in terms of hygiene…oh I do need some help with covering my leg to have a shower…and dressing. I still need the nurses to visit to dress my leg wounds but they are going well too. I can walk well with no boot and I can drive. This has all come about in the past week to 10 days.
  • I am, as they say, #blessed!

Some photos showing my progress. This post is published just under 7 weeks since my surgery on 6 July 2017.

This will be the last of the posts about my cancer diagnosis and surgery for a while. As I recover more over the next few months I will be back into other topics and those of interest each week. I appreciate that the number of commenters and the amount of support I have had since I announced I had cancer has buoyed me through much of this time. Big thanks to you all.

How have you managed when being ill or post surgery?

Are you someone who has little patience or are you someone who can wait?

Have you ever cared for someone post-surgery or who has a major illness?

Denyse.

Joining with Kylie Purtell here for I Blog On Tuesdays and with Leanne here for her Linky called Lovin’ Life on Thursdays.

 

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I Am Grateful Today. Part 3. 2017.98.

I Am Grateful Today. Part 3. 2017.98.

For those of you who have been following my story of having cancer, the surgery for cancer and the recovery, this post is bringing you up to date with my first month at home.

Going home! Are there any better words when you have been in hospital? I do not think so! I spent the whole of the journey back home being very grateful for my discharge from Chris O’Brien Lifehouse and being entrusted into my loving husband’s care. I think I talked all the way home as it had been some time (ok, 10 days!) since I had been outside the walls of the hospital.

The following photos will tell part of my story of gratitude.

However, throughout all of this ‘cancer journey’ the one person I am most grateful to is my husband:

the yin to my yang, the calm to my panic, the voice of reason to the voice of worry, the patient man for the patient who is often less than patient….I dedicate this post to him.

And even though he dislikes the attention, I have told him often enough that without his care, love, compassion, practical skills and commonsense my time becoming accustomed to have cancer and facing the serious surgery would have been much, much harder.

I am very grateful to B:

 

Here I am …within one month even I can see the differences and I know I feel different inside and much more ‘like me’ so I am incredibly grateful for healing time, a good body, great medical and surgical support and my outlook!

Taken on 12 August 2017, 4 weeks after my arrival home from hospital.

I am most grateful for YOUR support and care via your comments, your Facebook updates and those on Instagram. Thank you all!

Denyse.

Joining with Kylie Purtell for I Blog on Tuesdays and Leanne for her link up called Lovin Life on Thursdays.

The gratitude post in photos!

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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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I Am Grateful Today. Part Two. 2017.94.

I Am Grateful Today. Part Two. 2017.94.

Two weeks ago I wrote “I Am Grateful Today. Part One. Here is the link as it is the ‘back story’ to this post.

Where did those two weeks go? I did say I would write Part Two last week for I Blog on Tuesdays and Loving’ Linky on Thursday but a hiccup called anti-biotic reaction in my gut  s l o w e d  me down!  Add to that a  ‘foggy post-anaesthetic’ brain and needing to rest more, time got away!

Here I go, outlining some of the features I was grateful for during my stay on Level 9 North Room 16 at Chris O’Brien Lifehouse. I arrived on the ward late Sunday afternoon from ICU and the delight at seeing the V.I.E.W. from my bed made the wait worth it!

I was in my private  room from Sunday 9 July until Saturday 15 July – day of discharge.

Warning: I have added a few photos of myself as I was recovering. In some ways this was very helpful for me to see progress. Scroll on by if you would prefer not to look. 

The arrival in a room of my own brought me some independence even though I still needed some initial assistance to get up for the ‘loo. I was grateful, oh so grateful for my relative independence.

I was still on nil by mouth – liquid food via a naso-gastric tube  ( I tolerated it and guess I was grateful because the nutrition, along with the drip feed of fluid was keeping me alive (LOL) …just disliked the feeling on the fluid  tube feed inside me. 

I stayed in a hospital gown because..I was messy…no details but a fair bit of me in the head/neck area was cut into and then stitched back so there were… messy fluids. I was grateful for a warm quick wash in bed and a change of gown daily. It also meant my nice Sussan nighties stayed in the bag until later in the week.

I have mentioned elsewhere that I had some amazing nurses caring for me and I struck up conversations with them all. Often my chats were to ask them about their career choice and how they liked their working lives, and with only one exception all agreed (from young ones to older ones) that this is a vocation for them. I am incredibly grateful to those who choose nursing and who remain dedicated to it as I saw first-hand how rushed off their feet they could be. I often said to them “I hope you have had a meal and a bit of a break today/tonight”.

The night nurse I had 4 nights in a row who clicked with me was Roan and I know I featured him in a post recently  about how we shared a passion for  photography. He was the one who invited me to get up and onto the balcony for sunrise pics. I am so grateful for his genuine care.

As the week progressed I was grateful to see some of the surgeons’ team arrive each day to check on me (and the flap inside my mouth to see it was still ‘lub dubbing’. I was ALWAYS grateful to hear that sound from the doppler! 

I had excellent care from three allied professionals and I am oh so grateful for their advice and help.: the physio who got me into my boot and walking with some trepidation but I eventually could walk unaided. The speech therapist whose job it was on Day 6 post surgery to see if I could speak well (derrr. who was ever going to stop me!) and to drink my first glass of water…as sips! It was GOOD. So grateful for that drink for sure. The dietitian had lots of advice and seemed well-versed in IBS issues and I was grateful for my first day of clear fluids on the 7th day post surgery. But I never wanted to try the soup again after the third time! I tolerated the jelly and the apple juice well. On the last day in hospital I was on smooth soft foods but there was little for me to choose from (that I liked!) but I was grateful to have some mashed potato and some baked tomato – which I had to smash up for it to ‘go down.

Each day brought me something to be grateful for. I was told by every medical professional just how amazingly well I was progressing. I had no measure for this but they obviously did and when I asked the Professor quite cheekily did he think I could go home on the weekend (I hoped Saturday) he said words to the effect ” keeping on going the way you are and I see no reason why not”. How grateful I was that I would be discharged in the minimum time (I was told initially 10-14 days and I went home on day 10!) And check me out with NO more tubes down the nose or up the nose..oh so grateful for that day! 

The person I am also incredibly grateful to is the anaesthetist who put drips and cannulas in 3 different places ( he said to ensure that if one stopped working in the marathon 11 hour surgery, he has a spare to use!). I might bruise easily, and now 3 weeks post-surgery my bruises have gone. They did not hurt me much. I was grateful for relatively little pain in the mouth and just a bit from the leg’s various sites where flesh and bone were harvested. From day two I only ever needed panadol – drip version first, then  liquid version as swallowing too challenging with the swelling inside my mouth.

There are many quiet and lonely times in hospital once evening comes and I was so grateful for my iphone for messages, texts and emails (as well as IG, twitter and FB) and my new Ipad for games, music and more. I also took my art things but the one I did enjoy the most was making mandalas each evening. The meditative effect for me was so for helpful in mitigating missing my husband and home.

I was grateful for the kindness of friends who understood my request for no visitors other than my husband and my daughter. Our son could not make it in. I had many, many well-wishes and some surprises dropped into my room for me. I did feel grateful for this. It is a distraction and a way in which to reinforce how we need to connect with our fellow humans!

 

On Saturday 15 July, after the minor (which led to some not great complications for my gut later at home) infection  was noted in an area of my leg & treated,  my husband arrived…I was already dressed (keen much?) then he had to pack up the bag and more. It was done with ease and I was grateful to leave my room of shelter, health recovery and protection  to be put in a wheelchair and taken to our car.

I am grateful if you have read to the end. It was interesting trying to recall events chronologically and without the photos to help me I would have struggled. This weekend ( as I write) I am feeling less and less foggy-brained and the gut is settling from the nasty antibiotics.

Have you ever had major surgery?

How was your recovery?

What were you grateful for?

Denyse.

3 weeks post-surgery. On our way home from post-op check up.

 

Joining Kylie Purtell for I Blog on Tuesdays here and Leanne at Deep Fried Fruit for Loving’ Life here on Thursday.

 

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