Tuesday 18th December 2018

Two Steps Forward. One Step Back. My Cancer Recovery Update. 2018.126.

I am dedicating this post to the memory of a lovely woman whose life was cut too short by cancer. Chelsea, my friend Leanne’s step-daughter lived life to the max. Cancer may have been ‘in her’ but cancer did not take her spirit nor her love of life…and for her family including her husband and your daughter. My shared experience with Chelsea was that we were both patients of Chris O’Brien Lifehouse and because of that connection I wrote one of the Letters to Chelsea Leanne mentions on her blog.

Thank you for sharing the love and the life of Chelsea dear Leanne.

 

Two Steps Forward. One Step Back. My Cancer Recovery Update. 2018.126.

Update to update: even though I have outlined what was disappointing to me in this post which was an event from last weekend it has also taught me more about my capabilities in eating than I knew. I like many had tended to think eating with new teeth in my gums would be ‘back to what it was’. Not so, and I am now being more realistic and flexible.

Yesterday, 30 November, I turned 69. I had a wonderful and low key birthday celebration at a morning tea for two with my dear husband. We chatted, ate well, had our favourite drinks – small latte with an extra shot for me and English breakfast tea for him. Afterwards we wandered through the grounds of this lovely nursery, bought a plant each and came home to a relaxing afternoon spent at home. It really was just as I would have liked.

Except for this:

  • it has taken me sometime to adapt to some extra teeth added to my own on the lower jaw and I am very conscious of how much ‘saliva’ escapes and am constantly wiping – especially if I am talking…and drinking/eating. But with my husband or by myself I just get on with the ‘tidying up’ and enjoy what I can
  • I know my upper lip is shrinking in. I accept that. But, did you know you cannot ‘blow out the candle on your cake’ unless you get much closer…and I also cannot drink with a straw as there is no vacuum made in my mouth
  • I have a small but significant pain area in my….index left hand finger…the dominant one..the one where I write, draw and play. I have had pain in the tip of it before, as there is significant arthritis in the joint below. But not as bad as this. Our G.P. could not see anything affecting it from the outside, so he advised anti-inflammatories for a few days.
  • both of the above are so small, in the overall scheme of things I know, but I am writing about them (not using the left index finger!) because they have both given me cause for concern today especially.

Out Socially for Lunch.

  • Last Monday I had lunch at Chris O’Brien Lifehouse and was asked what I could eat. I nominated a simple cheese white bread sandwich and a lemon slice I had tried there before. Whilst I did not eat more than half of the cheese sandwich, I managed and did not feel as self-conscious as I thought. I also took my leftovers home! Win.
  • Today, I ventured to a local large club for a Christmas lunch get-t0gether with the Head and Neck Cancer group I am in. It was the first time I have gone out for anything other than coffee and cake. I gave it my best shot. It is a very friendly group and I did get to know people more today in this social setting.
  • What I found though was a reality check for me about my current status in recovery as a Head and Neck cancer patient.
  • Knowing I ‘could’ have taken the easy way out and ordered a safe coffee and cake that I knew I could handle, I decided to join in and actually have lunch! Remember I have only ever eaten a meal at home for over 2 years.
  • At the ordering desk, I asked for a small meal: I could see a baked dinner was on offer and was pretty sure I could manage some meat, potatoes, pumpkin and grave. “No”. Sorry,  we do not do small meals on Saturdays. “Can I have just one slice of meat with a couple of the vegies?” “No”. No offer of a kids’ meal (I think they would have refused that too) so I asked could I have just the potato and pumpkin and gravy. “Yes”.
  • OK. I thought, well this is a lesson. Not everyone ‘gets what they think they can’ and also maybe this establishment does not cater for people with different needs. And, I stayed quiet about it. I was a guest. Everyone else at the table was either way down the cancer recovery trail than me or could find foods to suit them.
  • I could eat one half of each vegetable and then as it takes me a while, it got cold. I had leftovers and asked if I could take them home. “No”.
  • I went and got a coffee later, no cake, chatted some more then drove home and ate….some lunch.

Why Write This?

  • It helps me to process it and maybe others who know what I am talking about can understand
  • The fact that I may have given myself something creative to do over the past 3 days as I needed to has not helped my mood much. I really miss using my finger.
  • I am hopeful, that by being patient and having the meds it will come good. Or I will go back to the G.P.
  • I am concerned I over-expect of myself, so writing this is helping me process
  • Maybe I just needed to ‘get it off my chest’ as they say!
  • It is not a post where I am wanting any sympathy but I did get insight into a world out there today that, in some respects, has no flexibility to meet special needs
  • I also know people face this as a challenge every.single.day
  • I am wondering if my ‘reaction’ was a bit of an over-reaction to a day which I had wanted to go well, and in terms of socialisation it did.
  • But it came up short for me, the head and neck cancer patient getting used to eating again in a regular environment, and so I wonder if I need to be more prepared for the situations I place myself in as I change from ‘no eating’ to ‘limited eating’ to ‘regular eating’.

It feels like two steps forward and one step back….but probably it is more like five steps forward and maybe one step back!

And maybe I will take a little container of my own next time for left-overs!

Thanks for reading!!

Denyse.

P.S. It IS most unusual for me to post on a weekend but for my emotional health I am…and I already feel better for writing it out. THIS is why I blog!!

Linking up with Leanne here for Lovin’ Life on Thursday…sending love to Leanne and her family. xx

 

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What Is The Hard* Thing? Part Two. 2018.94.

What Is The Hard* Thing? Part Two. 2018.94.

Last week I began this topic here and had a number of commenters who added their own hard things to the discussion.

What was common to many was the fact that even though they did not want to really do “their hard thing” they were prepared to give it a go and in most cases were pleased to have done so.

That mirrors my own experiences.

Thank you for sharing, everyone.

I found a couple of websites here for those who want to learn more, here and here.

Remember this is not an advice post, merely my story. Wikipedia has also provided a quote.

Exposure therapy is a technique in behaviour therapy thought to help treat anxiety disorders. Exposure therapy involves exposing the target patient to the anxiety source or its context without the intention to cause any danger. Doing so is thought to help them overcome their anxiety or distress.

About (My) Exposure Therapy.

I am not a trained psychologist nor therapist but I am someone who has been taught what exposure therapy is and whilst I did not like its title (I called it my challenges!) I can outline how it was explained for me.

My psychologist brought up exposure therapy as part of her helping me learn what I had to do next after getting myself more confident about some social things I had previously resisted. These included driving to Sydney and going to the Dentist. However, I was resistant to learning how it could help me conquer my fear about IBS and getting ‘caught’ short.

She outlined a list of 1 -10 and then asked me to tell her hardest (the 10 end) and easiest (the 1 end) activities I would be prepared to try and then to do them before the next session and report back. Exposure therapy continued to be resisted by me even though I had the knowledge, and a counselling-trained husband encouraging me. What to do? Nothing was improving, so I did some of the challenges at the easier end:

  • go out in the car about 15 minutes and not go to the toilet just to check I am ok,
  • go out again and not take an immodium in my bag just in case
  • go out for a longer time and not race home because it is too hard not to be sure about my IBS.

And then I HAD to face my worst fear and do a trip to Sydney to Lifehouse, see surgeons about my newly (24 hours previously) diagnosed cancer and be a passenger in the car. Three things! My G.P. said “take the valium, take the immodium” and my husband stopped at any loo along the way. I DID it all. Yes, with some drug help but no IBS.

That changed things a LOT. It did not happen just from that ONE experience…I had many more drives like that to face and surgeries but it was the beginning of getting better acquainted with of what I COULD manage by my thinking and doing.

In fact by early March 2018 I decided I could now drive myself to Sydney for the many treatments at Westmead Hospital. Yes, I still do get some IBS in the days leading up but I manage it. No, I do not scold myself any more nor cry about it. I get on with it. It will never be easy-peasy but I will continue to have my mind “do the hard things” and not be beaten by the anxiety of having IBS. By the way, this photo below is me having finished my 23rd session of measuring, treating and fitting at Westmead Oral Sciences. I drove myself to 18 of these!

Monday 10 September with my prosthodontist and nurse. No more visits for 4 weeks!

My Added Story.

Way before cancer and me learning about exposure therapy but when IBS was robbing me of experiences such as visitign the family in Sydney or going there for a social reason, I used to push myself to do some to these as it was “too hard” not to do them if that makes sense. One was (and still is) a family-duty visit to see my elderly father. I say duty because I really do not enjoy these visits much yet I also want to ensure he is OK and leave some meals and snacks I make for him. A long time ago, he tried to understand my IBS and made adjustments to my visits so we just stay in his apartment and talk. The times he insisted on going out for a meal or snack…well, they ended badly for me so he compromised.

With Dad – early 2018.

When I drove back home up to the Central Coast from the Northern Beaches  in the years preceding my cancer diagnosis I always stopped here. Sometimes I still do. In this space of nature, just off the busy and noisy M1, I get a sense of calm and success at having met that challenge of the journey and the reason. When I was there last week, I made this little video.

That’s not quite it from me in terms of the hard things.

What I have realised since even thinking about this post, is how much I do need to continue to encourage myself to take part in life’s changes. You see, I thought getting my teeth would be awesome and it is, but it added another layer of thinking to my concerns…so, if I can eat what I want to eat after so long, what will it be like if I become very overweight again and cannot fit into the clothes I bought in the last 12 months? I tells ya, it never goes away does it…this hard thing!

Comfort Zones.

No such thing really. Well, in my opinion, sitting or staying in your comfort zone helps you stay stuck.  was in mine for a while when I would go nowhere but when I think more of it is was a DIScomfort zone. I did not like the me that could not get herself motivated* to go again.

*I have not been diagnosed with clinical depression nor anxiety. I have been affected by reactive depression (sadness and tears) but that often resolves within a day. My ‘anxiety’ is more of a worry thing and has been part of me since I was a teen. My doctors and psychologists believe I am managing well. The very low dose, old fashioned anti-depressant I am on each evening is to help me sleep and it s l o w s  down my inner gut workings. If you have been diagnosed with either or both: depression and anxiety, then you should speak to your health professional about the types of things related to exposure therapy.

Moving On. My Next Challenge!! 

I am going to be OK as long as I eat well and mindfully because when I was very overweight I ate mindlessly most of the time and to stuff down feelings. See here, if you have not read my story. So, I AM different to the Denyse I was then and I have new and better skills to manage my emotions and life since cancer.

Wish me luck!

Hope you are all doing well too.

Denyse.

Joining with Kylie here for I Blog On Tuesdays and with Sue and Leanne here for Midlife Share The Love link up.

 

 

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September Stories. #2. 2018.92.

September Stories. #2. 2018.92.

When I began this series last week and ended with...to be continued, I know that was a disappointment to some readers and also could have been seen as a way to have you come back to read more. In some ways it was but in reality it is because, as I wrote, I realised the length of the September Story about being a principal needed more space.

I also did not realise until this week, that the day for publication of September Story #2 is R U OK Day. In the past, I have blogged about R U OK day using the R U OK guidelines and always hoping that if any reader needed help, they could find it by asking or calling below. In keeping with being honest, I will admit I could not tell my employer or fellow professionals I was NOT OK. I shared that with my husband and my G.P.

So, keeping that in mind, here is some background I wrote some time ago to get me started…again!

 

Maya Angelou once said, “There is no greater agony than bearing an untold story inside you.”

My story, as a K-6 teacher, English as a Second Language teacher assistant principal, deputy principal, relieving principal, principal, begins…here.

As I trawl back in my memory bank to unlock the story of mine. It’s no-one else, yet it was about more than me.

The day I never returned to my school as its principal.

Etched into my mind, my psyche and my whole body.

Thursday 5.9.2002.

But that is not where the story starts.

In one way it starts here:

The evening of Wednesday 4.9.2002 was when I knew. I knew that my emotional health was broken to the point of never being able to return to:

  • the school I had led for almost 4 years
  • the position of principal I had been appointed to from January 1999

Why?

That is where I need to take a breath…and let out the sigh and say ‘it is not an easy story to tell….and an even harder one for me to relate…but I will.’

First Year as a Principal.

I was busy learning about the school and the fact that the person I replaced had actually died the previous term without anyone at the school having access to school keys, passwords and the like made it more difficult. The school was a medium sized (around 450 kids from K-6) one with added Unit for Students with Special Learning Needs and an Autism Satellite class. Within the stream of classes there were two “OC” groups: Year 5 of 30 students and Year 6. These students gained their place at the school via competitive examinations the year before.

The school culture was, as my boss told me, one I would need to lead into the 21st century and I knew that but I also knew to hasten slowly on some changes whilst making some practical ones quickly. The previous principal, sadly departed, had been there for quite some time, shared very little in terms of financial goals for the school but, as a local which I was not, whatever he had done was acceptable. One big ticket item that happened under his leadership was a sports area which catered for a number of court-based sports.

One of my first spends was blinds. In a school with a second storey and in a very hot/cold place in outer Sydney, some respite from the sun and to make activities such as work via a whiteboard or screen effective this was vital. Once done it gave the school, from the inside and out, a better appearance for the community.

The school was fully staffed with each role filled: 2 Assistant Principals (teaching) 2 Executive Teachers (teaching). There was a group of speciality teachers: for Gifted and Talented students, Special Needs – Intellectual, English as a Second Language, Computer and Technology, Special Learning in Mainstream. I had been familiar with leading each of those roles in my previous schools with three  ‘new’ to me

  • having the O.C. classes
  • overseeing the use of the school’s facilities with an outside the NSW Dept of Ed jurisdiction
  • supervising a Special Needs Unit of 3 staff within the school

I like to think, looking back from 2018, that I did all I could to both understand, accept and get upskilled quickly to enable me, the educational leader of the school, to best meet the needs of those students, also considering the skills of their teachers and to see that the parents of the students knew the children’s needs were paramount.

That of course, was also integral to my oversight and management of the remainder of the school in the mainstream classes.

There were computers for my work and communication via emails did not arrive for a few years. It was a telephone, fax and mail school and being on the outskirts of Sydney the communication and responses were not as frequent as the suburbs of Sydney.

The year went well with ME being the major learner of course. I was the ONLY new staff member but I also had to ensure that MY leadership goals were part of the new school’s as well. There was a lot of policy discussion which was mostly related to why there were none where I was used to having these done. Like I have said before, I was there to make change but I also needed to handle matters carefully.

This year I turned 50 and on the staff was another person my age and I recall a joint celebration with two cakes. We did socialise somewhat during the school term with a restaurant meal or something similar with ataff. We had regular morning teas and I promoted collegiality and support for all staff.

My executive staff were good but two of them sought promotion – one to a country school, the other to a city school and of course I was pleased for them professionally when their  work was rewarded with what they sought. I recall an incident which was a critical one as it demonstrated a lack of foresight, organisation and care from one of the senior staff. This related to a student being announced at the final year assembly as Vice-Captain, when in fact, she was to be a prefect, and another student was the Vice-Captain. In an embarrassing time for the student, her family and the senior staff I had to interrupt the announcement with the correct person’s name. From that time, I was aware of more loopholes within the school’s management. Policies for example. In a first for this executive staff, there needed to be a written policy on the how, what and why of student leadership nominations, voting and results. From my side, it looked quite poorly scrutinised and certainly that family of the student who was incorrectly announced as vice-captain continued to let me know of their upset long after that incident. No apology in the world was good enough.

Onward into 2000 & beyond.

There were some staff changes into this year of the Sydney Olympics and I had to call panels of parent representative, school representative and one other teacher to enable me to interview, by merit selection, 2 people to replace those who had been promoted. More on this in the third post next week.

The education communities in and near Sydney loved the fact that this was the year of the Sydney Olympics and we even had an extra week off school in September 2000 for all of the available transport (buses mostly) to be geared to getting people to and from Olympic venues. A person who had carried a torch in part of the area near the school brought it to us and we all got to hold it. We had special days and the vibe was good. We even made our Staff Photo that year based on Sports and the Olympics.

I had some lovely people working at the school in administration and I know my mantra (from my boss) of keeping on heading into this famous 21st century was embraced but it remained a load on me as the school leader both administratively and educationally. There were courses in finance and human resources to attend and of course ones to train us further in Child Protection.

This became even more important as time went on, and I recall sitting at yet another training course thinking “I am responsible for all of this yet I have no control over it”. It was quite a  watershed moment for me.

I loved the role even so. I felt I brought action and innovation to the school and lifted its place in educational areas. I may not have been a local in a very conservative area but I did my best to keep open and good relationships with the local community, my Parent groups and the community of schools nearby.

At home, I know I really never switched off. The laptop came home with me. Newsletters written by me on the weekend. There was no email or other communications like that until 2002 so everything was done and then printed off for the families each fortnight. I improved more of the external appearance with signage and keeping areas safer by removal of damaged play equipment. I had a General Assistant 3 days a week and because of the size of the school grounds, he spent most of his time on a mower.

I had to organise school repairs and more via private contractors and be savvy enough to know how to ask for quotes and then to see how the school might benefit and when to get those happening in a child-free time. I would be phoned at home in school holidays about staffing and maintenance and there was/is not a time-off for school principals.

Next Time: Story 3.

What happened in the lead up to my emotional health breakdown.

I have written only some of what it is like to be a school principal. Despite the fact, as above “one day, I never went back” I loved the role. However, now in this age of social media and 24/7 connections, I do not believe I could perform the role without cost to my mental health.

Therefore I honour R U OK Day and this message below is for those who might be part of a conversation and not sure what to do.

I wish I had known that I could have admitted to a colleague or my boss how hard things got for me in mid 2002 but I could not. Not until I broke down at home on 4.9.2002.

Denyse.

 

Joining with Leanne for Lovin Life Linky here on Thursdays.

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