It takes a village...

Today we came full circle and Oscar finally had a surgery that he was supposed to have before he was diagnosed with Leukemia. Naturally, he didn't want to go to hospital and none of us wanted to take him. Auden, in particular, did not want us all to go.

Fortunately, we have a wonderful village of people who gather around us at times like this.

Auden was happy that one of his friends was going to come over and play with him whilst we were all in hospital for the day.

Oscar smiled when one of his little friends called him to wish him luck.

And I enjoyed the words of encouragement that came my way as well.

Plus, we came home to a cooked meal, a happy Auden, a cup of tea with some special people and some smiley face biscuits (Oscar and Auden's favourite treat from the hospital).

It was a day in which we realised how we feel so at home at hospital and sometimes so alien out here in this other world we tend to call 'real'.

It was a day when Oscar showed us what is truly real - resilience and the ability to find the silver lining in every cloud, the ability to be clear and simple about what matters and his own special skill at negotiating terms in a situation one might think was without any room for advantage.

This is how he conducted his conversation with the staff:

Anesthetist: "Oscar, we are going to put a mask on you and you will go off to sleep"
Oscar: "Well, but, see, I don't need to go to sleep. I'm not tired."
Me: "The Doctor will let you have a nice big sleep so that he can make sure it doesn't hurt."
Oscar considered this for some time (we could almost see his mind ticking over)
Oscar: "OK, I will go to sleep and then I can have an ice block." (he knows they have them in recovery)
Nurse: "Sure, we can give you an ice block as soon as you wake up."
Oscar: "Oh, ok then. But we have to get one for Auden too or he will be sad."
Mummy: "Yes sweetie we will get Auden one too."
Oscar: "Ok then."

Off we went. As he went to sleep in my arms and I lifted him onto the bed I promised the ice block.

An hour and a half later as we watched him sleeping he slowly opened half of one eye: "Where's my ice block?" he said. Then promptly sat up - ate two of them, a smiley face, drank his water and declared to the nurses that he was ready to go home. They didn't appear keen to argue.

So, off we went.....but not before Oscar negotiated one final (and third) ice block to eat on the way home. Plus a stop off to get a smiley face for Auden (we explained that the ice block would melt).

"Let's go home see Auden now Mummy."

Yes, lets.

It takes a village you know. Thanks to the village that gathered around us and accepted us for where we were at today and for bringing smiles to our little boys faces.

And thanks for checking in on us once again. All is well with us - hope all is well with you and your families.

Now, how to keep Oscar still for the next few days while he heals.....

Oscar the LION and Auden the Spiderman

I just wanted to share these photo's from the wonderful day we had at St Stephen's Pre School Fete. We are very blessed to be part of such a wonderful supportive and amazing community of families. We had such a great day - really, an incredibly joy filled time. Thanks to all who contributed to making the day such a success.

I think it was one of the Dad's who did the face painting. Awesome job!! Check it out:

R U OK - PTSD & Oncology Parents

Did you know that a study conducted in the U.S. in 2005 by Anne Kazak and colleagues for the Journal of Clinical Oncology found that nearly 100% of parents of children being treated for cancer develop some degree of PTSD and that more than half of the fathers and three-quarters of the mothers of these children develop moderate-to-severe PTSD? *[P.16 PTSD for Dummies (2007)]

In fact a child being diagnosed with a life threatening illness came third, after natural disasters and war, in the list of events most likely to trigger PTSD.

I didn’t know this but it would have helped if I had – and I hope that by writing this blog more oncology parents become aware of PTSD, its signs and symptoms and what they can do to overcome them.

The first time I had a hint of the possibility that PTSD was impacting my life was at one of my visits to my psychologist. I had been referred by my GP not long after Oscar finished the intensive phase of his treatment. I presumed this was mostly due to the sheer exhaustion of almost a year of being a full time carer for my son and all the practical realities that go along with that.

The symptoms that I reported to my GP included trouble sleeping, nightmares, feeling jumpy, sudden panic attacks, feeling overwhelmed and having trouble organising my thoughts. Of course, there were many more that I was unable to articulate at the time but that was my first attempt at explaining the mysterious world that I was living in.

At one of my appointments with my psychologist she mentioned in passing that I probably have a bit of post traumatic stress. She explained that this was due to the fact that my mind had been so focused on Oscar’s wellbeing for so long that my brain had rewired itself to only do that.

The next time I heard the term ‘post traumatic stress’ was at the Hospital Oncology Parents Education Day. It was mentioned at the very beginning of Dr Scott Howard’s address. He talked specifically about how post traumatic stress is brought on by parents not having their expectations met and mentioned the idea of transforming post traumatic stress into post traumatic growth.

Since then I have researched PTSD and would like to share some information with the other oncology parents and anyone who might be impacted by this invisible illness.

Some good reasons to seek treatment:

·         PTSD significantly increases the risk of suicidal thoughts or behaviour and the risk is especially high if a person develops both PTSD and depression;

·         Untreated PTSD can lead to further medical health issues and more risky behaviours;

·         PTSD can impair judgment, self esteem, the ability to plan for the future and the ability to control anger – increasing the risk of impulsive or destructive behaviour;

·         PTSD can impair concentration and productivity, create problems in getting along with others and inappropriate emotional outbursts;

·         PTSD can generally make it harder to control emotions, empathise with others, cope with financial matters and handle the day-to-day pressure of family life.

The good news is that learning about the condition and receiving treatment can turn things around. So, why does trauma result in such a strange response from your brain?

What is trauma             

-          It is a dangerous, shocking event that makes you fear for life and safety – or the lives and safety of the people you love – AND

-          It breaks down your psychological defences and shatters your sense of security

-          Unlike simple stress, trauma changes your view of your life and yourself

-          It shatters your most basic assumptions: “Life is safe.” “People are kind.” “I can trust others.” “I’m safe”, and replaces them with the opposite “Life is dangerous”, “People don’t care.” Etc

Aftershock

The aftershock of trauma continues to escalate unless treated. In addition to the obvious first degree of damage done, trauma often causes secondary wounds: -

-          Financial crisis

-          Broken relationships

-          Sadness when good friends can’t understand your trauma

If you don’t get treatment this may continue to build and push you further into negative thoughts, negative actions and a victim mentality.

THREE KEY SYMPTOMS

-          Intrusive thoughts about the trauma

-          Hypervigilance (always feeling like you’re on red alert)

-          Avoidance of places, people or things that remind you of your trauma

Two hallmarks that what you have is PTSD and not just a normal stress reaction

1.       PTSD seriously interferes with your life (an inability to carry out normal activities like working, cooking, cleaning, shopping for groceries)

2.       It lasts a long time – often Dr’s require the symptoms to have lasted at least a month.

BIOCHEMISTRY

-          PTSD stems from a normal stress reaction that just doesn’t know how to turn itself off. Basically, your internal stress switch gets tuck in the on position.

SUPPORT

It goes without saying, but I’ll say it anyway, - studies show that strong support from friends and family both before and after a trauma can lower your odds of developing PTSD. (this includes practical, emotional, financial or any kind of support until you are back on your feet)

TRIGGERS

Memory – PTSD plays tricks with your memory.

-          It can make you forget parts of your trauma

-          it can cause time skew (the chronological order of events during a trauma get mixed up in a persons mind)

-          it can also mess with your short term memory (making it hard to remember to pick up the dry cleaning)

-          WORST of all it can keep dredging up bad memories and throwing them in your face at sudden, random moments and make you relive the horror of the event all over again.

Personal experience: At first when Oscar went on maintenance I could not walk past the Camperdown Ward (children’s oncology ward at Westmead). If I did my knees would give way a bit and I would be hit with a vision of a particularly traumatic moment that I had in there with Oscar and I would find it hard to breath and keep walking. It felt like a physical assault and transported me to the event including the light in the room, the smell of the alcohols swab the nurse used and the other physical and emotional feelings that both Oscar and I experienced in a specific moment of his care.

Please note: if you have PTSD and describe a flashback to someone who doesn’t have experience with it they may tell you it is “all in your head”. You need to understand that in reality your whole body – not just your mind – is impacted in a very real and tangible way eg. heart racing, palms sweat, knees give way – you are literally reliving that moment in all its vivid details including smells, sights, sounds.

Every one is different and PTSD impacts everyone differently

The list of possible symptoms is as varied as our individual DNA and our individual experiences. I can’t possibly list them all here so if you are concerned about yourself seek help or borrow some books from your local library. I got almost all the information for this blog from ‘Post Traumatic Stress Disorder for Dummies’ (2007) from my local library.

Pete’s Story

So you can see how different responses can be my husband Peter has agreed to let me tell you a bit of his story.

Not long after Oscar completed his intensive treatment Pete admitted to me that he was in a lot of pain in his joints. This progressed to the point where it was very hard for him to get out of bed in the morning and walk. It was physically excruciating. He tried acupuncture, reiki, massage and pain medication but nothing eased his pain. He went to the Dr’s and was tested for everything under the sun including arthritis but nothing was confirmed. He was referred to a specialist thinking it might be fibromyalgia. In the mean time our GP put him on antidepressants to see if they would help. Fortunately, within weeks of being on the antidepressants his pain eased and over the next couple of months he was able to return slowly to life without any pain!

I tell you this story because PTSD can also manifest physical symptoms such as this. Here is a short list of some of the possible physical symptoms:

-          Cardiovascular problems (high blood pressure, increased risk of heart attack)

-          Chronic pain such as fibromyalgia or headaches

-          Autoimmune disorders such as arthritis, asthma, skin disorders – these can occur when the body mistakes its own tissues for an invader and starts fighting its own cells

-          Weight problems

-          Pregnancy complications

-          Digestive disorders

Please note: I am not a Doctor and all of this comes via my own limited reading. I just wanted to give you a sense of the things to look out for and perhaps raise awareness that it is an issue. Visit your Doctor and ask about it if you are concerned.

HOPE

Finally, on HOPE day there were three long term survivors of childhood cancer who shared their stories with us and gave us all great hope for our children’s futures. One parent asked the survivors if there was anything they could remember their parent having done that particularly helped (ah, the million dollar question us Oncology parents lay awake at night asking ourselves!!).

One of the survivors gave the most beautifully spoken answer to this question that has remained with me and which I would like to share with you today. She said (and I can’t possibly do her justice here in my poor attempt at paraphrasing) something along the lines of this:

“Don’t be so hard on yourselves. My mother still carries the weight of my cancer on her shoulders. I see it in her every day and that is almost 20 years later. So, be kind to yourselves. You are doing a great job. You are doing the best that you can.”

Here’s hoping all of our children survive their journey of cancer with a sense of humanity as profound and beautiful as the three survivors we were privileged to meet at HOPE day.

Thanks for taking the time to read this today. I am doing ok. I hope you are too. Much love, Cindy x

 

Grateful - all is well

There has been a lot going on and not much time for blogging around here lately. So I thought I'd just drop in and let you know we are all still here doing as well as we can. I have been working every minute that I'm not with the boys, at night when they sleep and on the weekends, trying to catch up on our bills and just slowly get ourselves back on track generally. All is well.

This is Auden and Oscar fishing with Benji (a pet dog Auden was given to mind for a week from preschool) down at Lane Cove National Park - we had a barbeque with Pa for fathers day.

 

 

Oscar's first check up went well we presume (its all new so we are not really sure what to expect from his bloods but the Dr's seemed happy). He is booked in for surgery in a couple of weeks time to finally see if we can remedy his urinary reflux and we'll be glad to get that over with.

 

We are really grateful that he is doing so well and send our love out to all those families doing it tough in hospital. Thanks for checking in on us beautiful people. Much love, Cindy x