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

 



Woohoo, no words, big love...

Oscar had his bone marrow biopsy and lumber puncture last Thursday and today we can confirm that he is still in remission - no signs of leukemia in his blood!! So, in this moment of now we are very, very lucky, grateful, happy......words are inadequate.

Sorry I haven't been updating the blog but we were sick for about a month with this nasty flu and basically did a lot of this:

So Oscar's bone marrow was cancelled several times and our usual routines of random chaos were even more disorganised and chaotic than normal.

The day of the actual bone marrow and lumber puncture procedure was a reminder of how un-fun it can be to keep a toddler away from food. Unfortunately, his first lot of bloods clotted so we had to redo them and wait that bit longer and Oscar, being older and wiser, kept pointing to the fridge in the waiting room telling me, "But there is milk in there mummy. Give it to me." He had been so good up until that point and I had explained to both Oscar and Auden what was going to happen as best I could but......I think we all blanked out how hard these days are. I can't believe we did that on a weekly/fortnightly basis for so long and I am very grateful my brain is so forgetful.

Of course, we were so well looked after by all the staff at the Oncology Clinic that we can only be thankful that they are such a wonderful bunch of people who we cannot thank enough. I had intended on taking cards and baking a cake to find some way to show even a small token of our appreciation but I just couldn't get my head together. How does one say thanks for all the extraordinary things they do for us while still managing to make it look and feel ordinary. Again, words insufficient...

No matter what the circumstances of our life at any given moment we know we are very, very blessed and I guess the best way to thank the staff is to live a full and happy life with Oscar grabbing each moment of joy along the way. This is especially poignant for us at this particular time as my Aunt has recently relapsed following a stem cell transplant and is doing it very tough in hospital at the moment. I can't possibly write this entry without mentioning her and all the unconditional love she gives to all of us and send out my deepest love and wishes for her and her family at this time.

I wish there was more I could say. I wish there was more I could do......

This journey is a rollercoaster and I'd like to think that I have somehow learnt something or evolved in some way out of all of it. In reality though I think all I have learnt is that I know nothing at all and that anything I thought I knew or had any kind of control over was just an illusion. The only actual fact that I can confirm is that LOVE helps - A LOT.

Take care beautiful people and thanks for checking in on us. Much love, Cindy x

Oscar's 2 year anniversary

Today is the two year anniversary of Oscar's diagnosis. In the spirit of looking forward and sharing important knowledge gained along this journey I thought I would share with you my notes from HOPE (Hospital Oncology Parents Education) Day. They are just in dot form and I have not had time to elaborate on them but they give you an idea of what the day was about, highlight recent research and share some tips on surviving along the way. I hope they give you an idea, make you feel less alone or just encourage you in some way. We were very lucky to have Dr Scott Howard share his expertise and thank everyone involved in making it happen. So, here it is:

HOPE – Hospital Oncology Parents Education Day – notes

“State of the art treatment for leukaemia and the prevention & treatment of side-effects of therapy” address by Dr Scott Howard, MD, MS – St Jude Children’s Research Hospital

-       Explained the importance of attending these events and sharing stories because ‘knowledge is power’

-          In his job as a children’s paediatric oncologist he tackles and subdues the most catastrophic illness children can face

-          Talked about Post Traumatic Stress resulting from expectations not being met. As parents, we had expectations that did not include the trauma and loss that cancer treatment entails for our children.

-          Also, when you finish treatment your expectations are not met because it is not over – the journey for a child with cancer and their parents is for life.

-          Highlighted recent research suggesting Post Traumatic Growth should be a goal to become stronger and to learn to live with uncertainty. This shifts the stress of not meeting your expectations towards a position of personal growth through acceptance of uncertainty and inner strength.

-          Mentioned a website www.cure4kids.org that is a collaboration from parents and a tool for furthering parent education through shared stories and parent groups

Scott also gave us a list of ideas on how we can help out?

-          Support each other

-          Fundraising

-          Help with special projects

-          Reach out beyond borders to third world countries that have a much lower survival rate due to lack of medical facilities for children with cancer (third world countries survival rate for childhood cancer is 20% whilst in first world countries it is 80% for the more common cancers such as leukemia)

-          Support each other (definitely can’t say that enough)

His address was completed with this wonderful quote:

“Cancer is not contagious, love is.”

Questions/Discussion following Dr Scott’s presentation:

Q} What is being done to prevent cancer in children?

Answer: There is nothing you can do toward prevention. There is about a 2% genetic component. Parents want to know why their child got cancer but it is simply just a random lottery of bad luck.

“There is almost nothing you can do to give your child cancer or prevent your child from getting it”

Question: What about the last 20%

Answer: The breakthrough will be in treatment and improvement in medications. Individual mutations need their own research so it is extremely time consuming. The next breakthrough will be in getting faster research results.

Dr Scott Howard concluded with an open discussion about different ways parents found to cope. He suggested three steps that assist in recovery and encourage post traumatic growth:

1.                   Be honest – it is terrible/horrible etc

2.                   Share your stories with each other.

3.                   Be there for each other.

Thanks for checking in on us. Oscar's bone marrow aspiration and lumbar puncture are scheduled for next Thursday 28th June. I'll let you know how we go. Take care and much love, Cindy x

Changes

“The accident caused an alteration which involved a quite unnerving primary change. It produced the unsettling sensation that I had been forced to become something different from what I was, and, more strangely, that I was both the spectator and the subject of the change.”

Tony Moore, ‘Cry of the Damaged Man’, p. 28

The above quote comes from a book written by a surgeon and rehabilitation specialist who is sharing his experiences as a patient recovering from a car accident involving a 30 tonne truck colliding with his vehicle. He tells his story from a patient’s point of view but with a doctor’s knowledge and experience of the hospital and medical system.

It touches on something a well-meaning friend of mine said in the heat of an argument some months ago. She had said, “I want the old Cindy back.” This sentence rings in my head and wakes me up at night sometimes because it is something so separated from the soul of who I am now to even think about the person I was before Oscar’s diagnosis. I have absolutely no idea who she was. I even went to the trouble of going through my photo’s from before D – Day (diagnosis day) and I can honestly say I have no idea who that person was. That old Cindy is a complete stranger to me and as sweet as it is that my friend misses her I have no such feelings. I just simply do not know who she was and do not have the time, interest or inclination in figuring it out. For me, there is no loss in this – just change itself.

“…in spiritual terms loss isn’t reality, it’s a concept created in the mind. When the mind applies judgement to change, what gets created is loss.” p.223, ‘The Path to Love’, by Deepak Chopra.

The human mind and its ability to judge is an important function that separates us from the beasts and ensures our survival. We all judge because we all think and the thought process is what labels our experiences. No one person is ever immune to this. We all wish to be ‘open minded’ and we all fail at this at times, especially when our life is in crisis.

Who wouldn’t resist the sudden change of their child having cancer? Who wouldn’t feel the need to fight against the loss of their child’s innocence and the childhood you imagined for them full of healthy development and joyful memories? It is natural to resist and you cannot beat yourself up about it. You do the best you can in each moment of now and sometimes you don’t do as good as you hoped, sometimes you do better and all of the time you are trying your best to find your way in the darkness that is a foreign world full of new scary medical jargon, nasty procedures and genuinely life threatening circumstances. No one knows the ‘right’ way to cope and no one knows how it ‘should’ be done. You just stumble through as best you can.

For me, the one thing that I kept focusing on was the idea that love heals. This is a cliché and means different things to different people but it is what helped me to get through the days. It is only the mind that resists change, formulates the concept of loss, tells you that you can or cannot do something. If you instead shift your focus from the head to the heart you find that none of these fears and forms of resistance exist. Instead, love lives in the moment, holds your hand and allows you to sit with ‘what is’.

To heal the ones we love and ourselves we go on a journey into the darkness where only love will provide the answers we are looking for. Reasons fail. There is no reason that any child should suffer the way so many do before they have had any time to enjoy life. There is no reasonable way to respond. There is no rule book on how one ‘should’ respond to circumstances that are so confronting to our every perception of life as we have previously known it. The only answer that makes any sense is: love.

So, I may not recognise the Cindy that existed before D-day but I do not care. Perhaps she had a lot of qualities that I ‘should’ miss. But I don’t. I love this Cindy because she doesn’t give her power away as much as she used to and she understands that her power resides only and always in love.

 Take care beautiful people and remember when you are resisting the changes of your life you are merely judging yourself and it will pass. Love awaits at the end of every tunnel of failed logic. Love will always find its way back to open you up and accept yourself and your circumstances. Love will be waiting for you when your ego surrenders to the truth of wherever you are today.

p.s. Our hospital visit went well today. Oscar’s bloods are coming back up slowly, though the platelets need to catch up. We will be back there again next Thursday to make sure the platelets have returned to the normal range. x

Labour of Love - A Mothers Day Tribute

All mothers know the tasks that mount around them. The washing, cleaning, feeding and organising combined with the consoling, negotiating, teaching, guiding and disciplining of little human lives. In the early days this is a 24/7 job with many, many months of sleep deprivation as mums are on call day and night to feed, change and soothe. This is a labour that can only be explained by love when you consider the enormity of the task at hand – in what other circumstances would a sane person agree to go without a full night’s sleep for months and sometimes years?

This is what mothers do and when your child has some special need those early days of extreme care extend out for longer and longer and, in some cases, never end. I recently read an article about a mother of a child with a severe disability. She described having had three nervous breakdowns through the sheer lack of sleep that her daughters care required. Remember those months of night feeds, nappy changes, inconsolable cries that pierced straight through you and had you marching to the orders of some random and mysterious forces beyond your control? For some mothers with children who have special needs there is no end in sight for that ‘phase’ and it is a monument to love itself that any woman has managed to live life in this permanent haze of service to their children’s needs. And yet many have for many, many generations.

My Nan did. Oh, if only I could talk to her now and ask her how she did it. She had five children to raise, one of whom was disabled due to a lack of oxygen at birth. I don’t know the day to day reality of her life when her children were young but I have heard she carried Graham on her back for the first four years of his life just to be able to have her hands free to attend to the other children and household tasks. She had no car and walked to the shop each day for groceries – not a short walk and up hill on the way home. I used to do that walk with her and whinge the whole way some days. Today when I drive past that Street and think of Nan I marvel at her sheer determination. Is there anything more powerful and stubborn than a mothers love? I doubt it.

Many years later when my Nan is no longer here to share her stories I find myself with a child who has special medical needs. The journey has been full of challenges. I think of the months and months I had to wake every hour to check his temperature, change his nappy, strip the bed and wipe away the excess wee (the medication would make him wee through a nappy in an hour) and more often than not the vomit. No matter how I managed his medication he still vomited, he still urinated excessively,  he still needed me on an hourly basis and we still ended up in hospital. Months stretched out around me in a fog and at times along the way I became him and he became an extension of my ability to keep him here. And I became a mother who is perpetually exhausted, worried, beside herself and broken in half by the guilt and worry of whether I could do a good enough job to get him through this journey that his DNA and blood cells have sent us all on.

Today that care is less but still we wake him each night and give him chemo, we change his nappy and yet still he wakes early having wee’d through the three nappies I have put on him in. And still he wakes early and I have to strip the bed, wash the bedlinnen and his pjs, dress him in fresh pjs and try to conjole him and his brother (whom he has woken) back to sleep.

And yet, this is what we do, for love. This is the work of motherhood. Sure the wages suck but is there anything you wouldn’t do to see your child survive and hopefully one day thrive or at least be the very best that they can be given the cards that life deals us and them along the way?

One day I look forward to burning his mattress and the layers of medication, urine and vomit that it has come to represent in my mind. One day we won’t have to give him chemo. And maybe one day in the very far off future we won’t have to go to hospital to check his blood. We are one of the lucky ones (though nothing is guaranteed).

The truth is, even if I had to do it for the rest of my life, I would, as many mothers do. I take my hat off to them because it is just exhausting and soul destroying work at times. But a mother’s soul is gladly given up for the love of seeing her child grow or develop into the potential that only a mother truly sees.

The truth is, if I had to do it the rest of my life I might have a nervous breakdown or two myself and there are many, many days when I just want to run back to the predictability of working and put the boys in full time child care. Ah, to have a ‘To Do List’ that is achievable, ticked off and completed at the end of the day – not to mention a pay packet and a sense of self esteem.

But that is not my journey and that is not the journey of many much braver and more compassionate mothers than I. These women are silently struggling for a brighter future for their children no matter what it takes and they are a source of endless inspiration to me.

This Mothers Day I will be thinking of my Nan and all the mum’s who continue to selflessly give themselves over to the exhausting job of caring for their children no matter what.

Stay strong and take time out to remember that you are worthwhile despite the invisible jobs that you tirelessly do. Every moment we get with our children is precious and the labour of love is rewarded by the richness of their personalities, their smiles, their laughter and their simple and joyful presence in our daily lives.

Love is all there is. x

All in all....Oscar's update

In the last five days I have had the pleasure for the first time in many months of Oscar just 'being', without any virus impacting on his precious little personality. It was great to get a glimpse of who he is underneath the endless stream of head colds and virus's and the medication cycle that is his 'normal'. He is such a chatter box and an absolute delight.

So it came as no surprise that his bloods are now very low. This is because we increased the chemo at a time when his bloods were showing high due to the constant impact of virus's in his system. Its hard for the Dr's to know that its a virus when it goes on for so many months and they worry that they aren't giving him enough chemo to do the most important job of killing off any dormant leukemic blood cells. So we increased the chemo to be cautious and now his bloods are crashing down and he is neutropenic.
We will decrease the chemo but his bloods will continue to fall for the next week or two and we have to keep a careful eye on him in case he gets a temperature as he has nothing to fight it off. At the moment his neutrophils are 0.5 and may drop to zero and his white cells are 1.4 and may also drop close to zero in which case it may be a trip to hospital for a few days. The platelets are doing well at the moment at 203 but they always follow the white blood cells so they will drop too in the next fortnight.
All in all, all is well. This is just part of the journey and we know what to do to take care of him. In the mean time it is tempting to consider taking him out of preschool for a few weeks to protect him, although Auden brings everything home anyway. Food for thought over the weekend.
I know I keep promising photo's but life keeps bumbling along around me at such a pace I never get more than a few things on my 'to do' list completed. Some day it will happen...
Thanks for checking in on us. Dr Margaret is away for whole month and we will miss her lots but she will be back in time for the big day and will perform Oscar's bone marrow biopsy and lumber puncture on 28th June (like anything, this date can change so don't fix it too firmly in your mind but if it does pop into your mind from time to time send it happy vibes for us).
We ran into some old friends, some of whom are doing so much better than when I last saw them I feel humbled at the tremendous strength they have shown to beat the very bad odds they were dealt, and some of whom are not doing so well as the dreaded cancer has returned to ravage their families again. My heart goes out to them and to all families everywhere.

Take care beautiful people and love, love, love one another. x