Sunday 24th February 2019

But It IS Still About Cancer. 2018.103.

But It IS Still About Cancer. 2018.103.

Since spending much of last Tuesday, 2nd October, at Chris O’Brien Lifehouse (my cancer hospital) in Sydney, I have been affected by the fact that the reason I am in need of regular visits is because I have cancer. Specifically a Head and Neck cancer that was removed from my maxilla and upper lip named:

“Hybrid squamous cell carcinoma showing features of both verrucous squamous cell carcinoma & conventional squamous cell carcinoma”

On Tuesday I got a copy of the Histopathology report from 6 July 2017 surgery. It was ‘less confronting’ to read from this distance of time but it did have words in it I found hard to read.

With no risks per se, other than age, it seems my cancer took hold. I reckon it was there for many months before it was discovered after having my bridge/teeth removed when the gums were so sore and growing over the teeth (my request to do so in January 2017 was not heeded until April 2017). Diagnosis came in mid May 2017.

Why am I writing this now?

Because after all the surgeries (4 in less than one year), and many, many visits back to Westmead for my prosthodontist to make my mouth ready to accept the upper prosthesis of teeth, I thought I was almost done.

I am not.

Cancer is and will always ‘be there’ and in fact, my Professor and lovely Cate, reminded me “It IS about cancer” and that is why I come back for check ups and need to be vigilant myself about any changes.

My day of catching up, meeting people and doing my trip to Sydney independently was wonderful and I am so grateful that all of these people care about me and helping others with cancer. But it came home, forcefully, and is affecting me today with some sadness;

Cancer is always there. I had let it hide for a while behind everything else I was doing. I appreciate you reading this far! It is important, always, once I have something impact me as this has, that I share.

My husband is a wonderful person I can chat with always and I saw my GP to update him as a de-brief.

But before I go on, I had a TREMENDOUS day on Tuesday, noteworthy too because it was the first time I had driven myself to Chris O’Brien Lifehouse.

Asking Others For Their Thoughts.

I asked around  facebook friends who I know are through the active stage of treatments for their thoughts and some kindly replied with these words.

From S.:

“I’m past the ‘active’ part of my treatment, I’ve had surgery and radiation. Now I take a once a day tablet to prevent recurrence and I got 12 months all clear. But some days I feel just awful with fatigue and other side effects. I spend whole afternoons sleeping on the couch. I don’t feel like myself and it’s really hard when people say ‘oh you must be back to normal now’. I’m not back to normal and I don’t know if I ever will be. The weight of expectation (my own and others) feels so heavy and overwhelming sometimes. Depression, anxiety and feeling down even though you survived cancer feels inevitable and like I am lacking gratitude for my recovery. I’m not, it’s just hard”

From V.:

For me post cancer treatment is a mixed bag. I’m so grateful for my recovery but the fear and uncertainty for the future is still there. It’s a monkey on your back forever and you have to find a way to live with that monkey. The monkey is very loud and cheeky at times. Other times I give my monkey a time out and she sulks in the corner. At my recent follow up appointment I sat in a waiting room full of women ( I had early stage breast cancer).   They all had that haunted ‘how in the hell did I end up here’ look on their face and you just bravely smile at each other without any need for words.

From S.:

It’s my cancerversary on Tuesday so I’ll be blogging about it too! I don’t think the cancer shadow ever goes away but I try not to let the worry of it steal my joy of today.

From M:

 The elation of hearing the words “all clear” faded more quickly than I imagined and in its place was anxiety. Having been so closely under the microscope for so long,  I felt anxious that the cancer might return and it wouldn’t be spotted. Over time, this does ease and I look forward to my six-monthly check ups for continued reassurance that all is ok.

From M in N.Z.:

It’s normal to have a slump in mood after treatment ends. I availed myself of the Cancer Society psychologists who are trained to help us deal with the transition from treatment to the new normal.

I also went to the NSW Cancer Council website and found this article about ‘after the cancer treatment stage’.

Can cancer be a positive experience?

  • Many people find there are positive aspects to having cancer. Some even refer to the disease as a life-changing experience.
  • Cancer may cause you to re-examine your life choices, and may motivate you to travel, take up new activities or make lifestyle changes (e.g. starting exercise or quitting smoking). This shift is often gradual, as even positive change can take getting used to.
  • After treatment, some people want to help improve the cancer experience for others through advocacy or volunteer work.

Read more at https://www.cancercouncil.com.au/15289/b1000/living-well-after-cancer-45/living-well-after-cancer-back-to-normal/#sUFxCMjbDj1ZGQz4.99

New friend to me, and known to many is journalist and M.C.  Julie McCrossin, who is now 5 years down the track from her Head and Neck cancer diagnosis and she sent me here, to her podcasts for the Cancer Council, and this one of fear I listened to again.

Liverpool Hospital Head and Neck Patient Support Group listening to Dr Ben Smith, Ingham Institute on cancer recurrence anxiety. Learn more about managing anxiety. Listen to The Thing About Cancer Managing Fear podcast cancercouncil.com.au/podcasts/episo… @beyondfiveorg @CCNewSouthWales http://feeds.soundcloud.com/users/soundcloud:users:314217701/sounds.rss

Julie said “I find the fear catches me unawares, like on my recent birthday”

Thank you friends for sharing.

So, I am not unique.

Always good to know.

And I can share my worries and fears with others who ‘get it’.

Having cancer never really ends, but I am always grateful for the friendships and new experiences I am having as a result of cancer.

Thank you one and all.

Denyse.

Joining with Kylie for I Blog on Tuesdays here and with Sue and Leanne here on Wednesdays.

 

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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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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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My Cancer Journey Begins. 2017.75.

My Cancer Journey Begins. 2017.75.

A while back I decided that to best describe the life stage we were at was to use the word ‘journey.’ For some people and their reasons, journey is not liked. I happen to like it and will be using it for what is now being added to this life stage!

Thank you to the many people who commented here last week and on Facebook when I made my news public. Sharing has helped me!

Whilst I do not intend to blog every week about the cancer that is here within…I will for now as it helps me!

The cancer journey continued with a trip to Westmead Oral Health on Wednesday 24 May for a consultation, examination and measurement session with the Dental specialist who will be part of the surgical team when I get my cancer cut out. I admit I was stressed. I still am. It is such an unknown and my mind needs to be more calmed. However, as my GP said when I saw him after this big session on the Friday “Denyse, you are doing very well indeed!”. Today we are back to Westmead for a follow-up with the Dental Specialist and scans on my neck and head to ascertain all is well for the major surgery and on my leg where the bone and skin will be taken for the reconstruction and skin graft.

Sigh.

Still mentally criticising myself for the meltdowns, the tears in front of the professionals and more….yet it is a situation of such immense emotions and I was already struggling somewhat. I am still going about my days at home with as much normality as possible.

In the meantime, I am making art, taking photos, blogging, chatting on-line, reading, walking, tending the garden and talking to my lovely husband and being mindful to eat as well as I can even with my sensitive gut.

On Thursday I made a trip to Budgewoi to take some photos and these help remind me of the journey and that it is, like everything in life, one step at a time.

I am not sure as I am writing this when  I will be making the journey across this bridge again on the way to Chris O’Brien’s Lifehouse. I shall update.

Thank you for reading thus far! I am encouraged along the way via the comments and support.

Denyse.

Joining Kylie Purtell, celebrating her blog’s 8th Birthday, here and with my friends who also Blog on Tuesdays.

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