Monday, September 24, 2012

A farewell and celebration of Katie's life


Katherine Emily Marmion
17 February 1992 – 5 September 2012

Canberra
10 September 2012


A Celebration of the Life of
 Katie Marmion

(Opening music: Moonlight sonata)

Welcome
Celebrant
My name is Peter and I have been asked by Katie’s family to conduct this celebration of her life.

Katie’s family would like to thank all of you who have come here today to join with them in gently farewelling her. They are particularly grateful to those of you who have travelled a long way to be here. Katie’s family are deeply grateful to family and friends, who have reached out to them with such generosity over the past six days. Their thoughts are with all those who would have wanted to be here with them today, but who for various reasons have been prevented from doing so.

There are many glowing tributes in the social media from Katie’s many friends, as well as in private messages to her family. Doug and Gen feel that Katie’s friends made her the person she has been, and they recognise the love and support shown to her by Hannah, Kari, Hazel, James, Richard, Sophia, Bethany, Sophie, and Quoc, and all of her other friends – you know who you are.

Only those who have walked alongside a beloved sister, daughter, niece, cousin, or granddaughter, as she battled a disease such as Katie’s, can really begin to understand what her family has been going through since her death last week. Those who love deeply will grieve deeply; no philosophy or religion ever taught can prevent this wholly natural reaction of the human heart. When love is unconditional like this, however, acceptance and letting go of those we love is equally a part of our human condition. Nothing can now detract from the joy and beauty that you shared with Katie; nothing can possibly affect the happiness and depth of experience she herself knew in her life with you. What has been, has been – forever. The past with all its meaning is sacred and secure. Your love for her and her love for you, her family and friends, cannot now be altered by time or circumstance. You will remember her as a living, vital presence.

As you talk about Katie today and in the days and years to come, you will reminisce, and laugh, and cry. Eventually, the times you grieve will grow further apart and shorter of duration, while your fears that you might forget her will dissipate. Your memories of her will only grow stronger.

Of course, the impact of Katie’s death has also spread well beyond her immediate family. When, suddenly and unexpectedly, we lose a dear friend, or someone with whom we have lived, studied, or worked, we are confronted with the reality of our own mortality, and we are led to acknowledge our tenuous grip on the life which, at other times, we take so much for granted. Life seems to stand still. I believe that what you are called upon to do today is to let life stand still, put aside everything else on your minds, bring yourselves into this sacred space, and reflect on Katie’s life. As you do so, you will be recalling the experiences, the relationship, you shared with her. You can take satisfaction that Katie has been, and still is, a part of your life. Her influence endures, and will continue to do so for Gen and Doug, for her brother, Sam, and her sisters Mady and Sinead, for her grandparents Bill and Mem, for her cousins, aunts and uncles, and indeed for all of you whose lives she touched.

Katie was still young, and by any normal expectations, life was stretching out before her. Her family could be excused, therefore, for asking, “how could life be so unfair?” I think that if Katie were able to answer that question for us, she would simply say that life is neither fair nor unfair – life is life, and that this has been her own particular story. As you will hear in a few moments, it is the story of a loved and loving daughter and sister, a beautiful young woman with a burning passion to make our world a better place, and who asked little of life beyond finding something meaningful to do, making her own special contribution to the world we all share, and sharing her life with those she loved.

First Reading
Celebrant
In these past days, Katie’s family has found consolation in some beautiful words she wrote herself not long ago. Her mother, Genevieve, will read them for us.

Genevieve
Katie wrote that she was able to reflect on her memories and not cry - not mourn what she had thought was her lack of success in life. she wrote a piece she titled 'Treasure'.

"I am so lucky that at this young age I am actually quite proud of the person I have become.
A childhood and adolescence spent in the grips of mental illness, now young adulthood consumed by cancer.
I have lived a lot of things in my short life many people never have to, but tonight I have no regrets.

This moment is enough. Tonight I have forgiveness and understanding and a stack of words full of courage and hope to draw comfort from.
I am certainly not alone in this world, and that is all that could possibly ever matter."

Katie reflected on the ‘Serenity Prayer’ of St Francis, and developed her own version:

"In ourselves we find the serenity
To accept the things we cannot change;
The courage to change the things we can;
And the wisdom to know the difference"

She goes on to say,

"Serenity comes not from a higher being but from within.
Finding courage, finding acceptance,
and finding peace within oneself.
Choice and control. These things are central to my life."

Eulogy
Celebrant
Katie was born in Geraldton, Western Australia, a beloved daughter for Doug and Gen. She began her primary schooling at Waggrakine, near Geraldton, and when the family moved to Canberra, she was enrolled at Turner Primary. She went on to Lyneham High, and completed her secondary education at Dickson College. Katie went on to commence a Psychology degree at the University of Canberra. It is typical of Katie that she had arranged to take a year off to do volunteer work with World Youth International in Peru, and had been working at JB Hi-Fi to save money for her fares and other costs. It also typical of her that when it became impossible for her to participate in the project herself, she was able to inspire another young person to take her place.  Katie’s mother spoke to me of a “gently vibrant and fun-loving” young woman, who was at the same time a deep thinker. Her father told me that while she was a caring person, Katie had no time for excessive sentimentality, and she was focused on what she wanted to achieve, and organised in pursuing her goals.

For Katie, life was not only about the big issues of the day, but also about the ordinary good times with family: watching a DVD, or cooking and eating at home. There were memorable family experiences as well, like the four months when Doug’s work took them to the northwest corner of Papua New Guinea, experiencing a different culture, and making new friends.

Friends were always of central importance to Katie, and she loved inviting them home to spend time around the pool, in front of a DVD, clubbing, or going to the coast with them. Katie never tired of entertaining her fronds, and she loved to cook for those around her, even when her own appetite was affected by the treatment or pain she suffered. Katie often tried to get her friends to sit through the movie Gone With the Wind, but had limited success.

Katie was a talented, self-taught pianist and guitarist, and also sang beautifully, in a way that Gen described to me as “quietly confident but not showy.” She was also enjoyed drama, especially musical theatre, both at school and later on, and she brought a critical eye to her appreciation of movies.

Katie had always enjoyed reading. She had enjoyed the Sherlock Holmes books in earlier years, and progressed to Evelyn Waugh and Kurt Vonnegut more recently. She also enjoyed political and current affairs blogs, and subscribed to the New York Times online edition. She loved Stephen Fry’s mordant wit on TV.

Katie did not find in organised religion the answers to the big questions, but she was a continual seeker, who liked to explore the values of the various belief systems, drawing from Buddhism, for example, a belief in mindfulness, and living in the moment. She had no time for self-centred people, and Katie drew her inspiration from people and institutions who actually changed things for the better. Her concern for the less well off sprang from a deeply held commitment to social justice, and translated into her commitment to sponsoring a child overseas. Her life was truly a gift to those with whom she shared it.

Tributes
Celebrant
I now call on Katie’s good friends Hazel and Kari to share some memories with us. They will be followed by a good friend of the family, Alaine.

Hazel and Kari
For Katie…
In thinking about what we were going to say today, we were looking through some of what Katie had written and put out publicly. one of her writings that we came across was particularly striking:

"Studying human beings will inevitably teach you that we are all different, and it is important to recognise that all humans experience is on a continuum. That everyone has a unique story and reason for everything they do and are."

This passage for us, reading it now, captures a lot of Katie's character. She showed a real curiosity for people and the experiences that contribute to the person that they are. I think for us, it was this interest in people's journeys that made her such a compassionate friend. She had so much time for people, even when she was ill, and was always so grateful for her relationships with all those she drew around her. She had an amazing clarity about what was important to her in life, and wisdom that allowed her to see herself within a much bigger picture.

We feel it fitting to quote here some words that Katie very much cherished from Max Ehrmann's 'Desiderata'.

"You are a child of the universe, no less than the trees and the stars; you have a right to be here."

Remembering Katie now, she had a real desire to surround herself with the people and things that made her happy. she had a love of beautiful hats, shoes, clothes, Robert Downey Jr, red lipstick, swearing, Gene Wilder as Willy Wonka, fantastic sunglasses and many, many other things that people will find memories in.

Music particularly was a great passion. A beautiful voice herself, no one dared battle her in Singstar for fear of embarrassment and total annihilation. Not one for political correctness, she appreciated good, witty humour such as the stylings of Tim Minchin and Stephen Fry.  So much so that she offered to bake two hundred cookies for a complete stranger she met on Twitter in exchange for tickets to see Stephen Fry. Even following through after it turned out they had to be gluten and dairy free.

Speaking of food, we can remember many a good chat over cheesecake, coffee, pad thai, brodburger and Sammy's. Many of her friends remember these chats ensuing in a good gossip and great political debate, making it very clear often that while she understood everyone was entitled to their own opinion, sometimes they were just wrong.

Katie's warmth, humour, compassion, friendship and love will be cherished. A couple of months ago she made note of a website that quoted young children's thoughts about love and what love is. A very wise four year old said:

"Love is what makes you smile when you're tired."

We love you Katie. Through thick and thin, tired and awake, when things were looking up and when everything was falling to pieces, you put the biggest smile on our faces. We can only hope that we helped to make you smile as well.

Goodbye, beautiful Katie.

We will miss our Sutton dates, brood dates, shopping dates, laksa dates, road trip dates, milk and honey dates, couch dates, Indian take-away dates, Hazel’s car dates, Skype dates, baking dates and all the memories we made and those we never got to make.

And in quoting one more time, thank you for all the "warm fuzzes" you gave us. We love you.

Alaine
For  Katie:
When I think of Katie I think of sunshine. She emitted an energy that was astounding. She radiated warmth, vibrancy, positivity. You could even see the sunshine through her skin. She was positively luminescent. We all wanted to be around Katie. She made us feel warm, alive, nourished. She was a living challenge to the claim of science that the planets revolve around the sun.

Katie never sought to be at the centre of anything. Her strength of presence was much too secure for that. Her sunshine was much more egalitarian. It was irrepressible; always sparking and engaging; always seeking to interconnect ideas and people in the real  and hyper-real or digital world. Being with Katie was a postmodern statement. The physical and the digital seemed to be pretty much interconnected. An idle conversation with Katie was always, in more recent years, a conversation with Katie and her iPhone. Together  they managed the trick of no longer making the conversation idle. In the hospice, when I worried out loud that my kids might access inappropriate  material on youtube, Katie had already googled how to set security settings for my browser and gave me a brief on-screen tutorial. The best was the last time she and her mum visited our house. The kids were playing Lego Batman on my PC laptop, and the laptop froze. Katie, who's surname was surely Apple-Marmion (along with that of the rest of her family), tried to help them out but couldn't. Instead, she took out her iPhone, photographed the frozen screen, and uploaded it on Twitter, asking whether anyone had any suggestions. A response came within a couple of minutes: ' Close the lid, douse it with petrol, and set it alight. Then go to the Apple store to buy a Mac.'. It was a moment of such great levity at a time when Katie was gravely unwell and which could have been, if Katie were more normal, a sombre occasion. Not with Katie.

She often turned the ordinary into the extraordinary. sunshine has a habit of doing that.
I suppose by definition, dying is ordinary in that it happens to all of us, but once again Katie turned it into an extraordinary event. A palliative care specialist once told me that people die as they live. Katie sure did that. She maintained her integrity, her brightness, cleverness, engagement, empathy for others, sweetness—not to mention her iPhone—even in the most difficult circumstances. I still can't get my head around the mindset that enabled her to call her blog 'Lucky, really'. Katie didn't live with denial, she lived with the desire to make every moment an engagement with the humanity of others, and she saw the humanity in her own plight.

'Lucky, really' shows such a generosity of spirit, such an appreciation of the plight of others, such humility, that it renders me truly in awe of Katie. She is such an inspiration.

Her mum and Dad, Genevieve and Doug, have been through a very hard time and have given Katie their all. they brought Katie into the world and gave her the environment where she could blossom, as she did. They created a beautiful family environment with their three children, Sam, Katie and Mady. They are very amazing parents—loving, affirming, nurturing, without stifling. Their kids are a testament to the fact that they pretty much got the balance right. None of us can comprehend how sad you all feel now. We give you our love. We are so, so sorry.

I'm not a religious person. I believe that Katie will now fuel the great cosmos with her energy. The stars will shine brighter thanks to Katie. We will all be warmer and ever so much more alive, thanks to Katie. Katie, we can't thank you enough.

Reflection
Celebrant
We have heard a number of tributes to the memory of a special young woman; a dearly loved daughter, sister and granddaughter, a loving and caring friend to many.

I invite you to spend a short time in silence as we listen to some of Katie’s favourite music and watch a presentation on her life. I am sure you will all want to take this time to reflect with deep gratitude on her life and on how it touched your own.

DVD presentation and reflection music:Pure Imagination’ (sung by Gene Wilder in Willy Wonka)


Second Reading
Celebrant
As our second reading, Katie’s family have chosen  'Feel no guilt in laughter'. It will be read for us by Doug's cousin, Sandra.

Sandra
Feel no guilt in laughter, she'd know how much you care.
Feel no sorrow in a smile that she is not here to share.
You cannot grieve forever; she would not want you to.
She'd hope that you could carry on the way you always do.
So talk about the good times and the way you showed you cared,
The days you spent together, all the happiness you shared.
Let memories surround you, a word someone may say
Will suddenly recapture a time, an hour, a day,
That brings her back as clearly as though she were still here,
And fills you with the feeling that she is always near.
For if you keep those moments, you will never be apart
And she will live forever locked safely within your heart

Celebrant
Katie’s family have asked me to pass on their invitation to you to join them for refreshments after the ceremony, at the family home.


The Committal
Celebrant
It is now time for us to respectfully farewell Katie, grateful for the life, which has been lived, and for all that life has meant to us. I ask you to stand.

Tenderly, lovingly, and reverently,
We commit the body of Katie Marmion
To nature’s keeping.

We give thanks for her life,
We remember with gratitude her deep love for her family,
Her sense of humour and her generous heart.
May any regrets we feel today be turned into gratitude
For the time we shared with her.
And may the chill darkness of death give way
To the warmth and sunshine of her memory
That we will cherish forever.

May we leave this place in the quietness of Katie’s memory,
Offering our love and support to her family.



Floral Tribute
Celebrant
Katie’s family will now place sprigs of wattle on the coffin, and would like to invite all of you who would like to do so to follow them. The family will have a little more quiet time together, after which they look forward to joining you outside the chapel, or at their home.

Music for floral tribute: ‘Clair de Lune’
Committal Music:       'The Heart Asks Pleasure First'
Concluding music:      'They Can't take that away from me'
                                       ‘About her’



Monday, September 17, 2012

Sunday, September 16, 2012

No more ouchies...

Hello everyone, Katie's dad and mum here. It's with great sadness that we have to tell you that we lost our beautiful Katie last Wednesday morning. It happened peacefully, and she was surrounded by her family, we held her hands and kissed her goodbye.



Many people have asked about what happened since Katie's last post so here's an outline.

At the end of July Katie was moved to a new chemotherapy regime as the previous one was no longer working. After several rounds she was starting to need regular transfusions of blood and platelets. This came to the point where chemo had to be put off to give her bone marrow time to recover, but further scans and tests showed that the cancer was progressing rapidly and her bone marrow would no longer cope with chemotherapy.

On Monday 27 August the doctor told us that further treatment would not be effective and that she likely had only 3-4 weeks remaining. This was shattering news--we had thought and hoped that Katie would have at least a few more months. Katie wanted to tell her friends herself (so we had to keep quiet about it for a while) and she managed to see some and give them the bad news. For some weeks she had been losing the use of her legs and now her arms were starting to go as well. She coped well with this loss of independence even though this was one of the things she feared most about being unwell.

On the morning of Wednesday 5 September she started to find it difficult to breathe despite everything the doctors tried, and we knew (and Katie knew) it was all coming to an end. We gathered around, holding her hands, rubbing her feet, kissing her and talking to her while she struggled to breathe. All she could do at this point was gently squeeze our hands, look at us and try to speak. It was all over very quickly and our Katie was gone.

The funeral was held on Monday 10 September at 4:30 and attended by many family, relatives and friends, school colleagues, previous teachers, nursing staff and medical staff, climbing buddies, and others. It was an opportunity where we remembered Katie with sadness and joy. We will provide another blog containing the reflections and readings on another post.

We thank all her friends (especially those Katie connected with through social media) for their kind words and tributes.

-Katie's Mum and Dad




Saturday, July 28, 2012

Ouchies

Been a pretty sore week, but there has been good news! The early morning mri showed the brain cancers had reduced in size and nothing is pressing on anything else and it is all very good and nice. This year there haven't been a great many victories - or if there have been they've been quickly forgotten.

So. Brain is good, just have to work on everywhere else and hope and hope that this new chemo is effective. Its very different to the old protocols - just the way it makes you feel physically, psychologically and emotionally. This chemo is known to cause aches and pains in your bones and muscles. Its difficult to say what pain is caused by what (which drives me mad), and so what to do about them is unclear. It also has some pretty nasty fatigue which, once its taken hold, its pretty difficult to get out of it. Just have to keep going until I'm comfortable with stopping for a while. So basically sleeping until I wake up in need of pain medication.

The jaw pain thing is all a bit weird. As I'd said it hasn't been bothering me much since the increase in dose, but it turns out without that coverage its probably the worst pain I have. We completely forgot my evening meds the other day (which includes all my long acting pain drugs). So I then woke up at 1am with horrible pain in the left of my jaw, hardly aware of any of any other discomfort. Plan is to find a dentist or something tomorrow after bloods who will fix my mouth, and it will somehow then trigger the death of all the tumours, and I will no longer be a bald, bloated, dependant alien. Right, now that that's settled we'll just have to work a good date for the party!

Sigh. So bloods and hopefully tooth stuff tomorrow, chemo friday, and some appointments with various dr's.

Oh and on top of the pain and all, I dropped my iphone in the loo! So dad's popped it in a box with some moisture absorbing super crystal things which may fix it all up. We find out tomorrow.

Sunday, July 22, 2012

mystery pain

I've spent the day mostly just trying to sleep. I was lucky to be quite comfortable still last night and so was able to attend a friemds 21st which was lovely. Unfortunately i woke a few hours into the night with old pains worse and a new burning aching sensation down the back of my left leg. Despite hydro nd  panadol I've had little luck managing it, just better patches where the old pains are less and the new more localised. Hoping for a more solid night sleep tonight, starting with the valium rather than waiting til  i've woken up  a bunch of times to take it.

Apparently the left leg may very well be a result of the new chemo. Nasty aches and pains are among the more common complaints heard by a nurse who came round to deliver some syringes for hydro. so thatd be grand if it werent symptomatic of something more sinister. not loving being so drugged again, though its infinitely superior to the alternative pain/s.

early morning mri tomorrow of  my head and then onc doc later. hopefully a productive and not too uncomfortable day.

Friday, July 20, 2012

"A Blow Upon a Bruise"

Written in treatment room:
     Once again I've left it a little while longer than I intended - sorry! I really need to try do this at least weekly, otherwise I forget what I've written and whats happened and what I've written about whats happened. Like this week. And last week. Also sorry twitter people for failing to post yesterday like I promised.


With the increase in the Junistar my jaw hasn't been causing me any pain at all really, except when I would bite my lip eating (which was a lot for a few days). However, the numbness remains. The xray of the jaw revealed that I have an impacted tooth, most likely having nothing to do with the pain. So I guess I need to see a dentist. Fun. 


Fatigue was an issue again; there have been a few days where I only really woke up and left bed to eat. Its pretty constant actually, I've dozed of d 20 times just whi


Written at home a few hours later:
     Ok so I pretty much gave up after falling asleep on the keyboard for the hundredth time and here I am at home, a bit more awake hopefully gonna be able to finish the post. Funny it happened just as I was telling you how tired I am. Its hard to tell if it was the new chemo hitting me or if its from sitting in a chair on lots of drugs for hours and hours, or if its how little sleep I got last night or (the more likely) all of the above.

Yes! Thats right, a new chemo. Yesterday I was booked in for a CT scan of my chest (much better detail than an xray) followed by blood tests. My veins were very uncooperative. Eventually one of the people trying to get a canular in wound up pull out the local anaesthetic and going for the wrist. Something unusual happened during the scan; the injecting of the contrast dye briefly caused severe pain up the right arm for a moment. I had a moment of panic, wondering if the canular was indeed in the vein. Though seconds later I tasted the funny taste and felt very very hot, both signs the dye was going where it was meant to.

We went over for bloods then, and I was pretty much certain by the time we got there that I was very low on haemoglobin (the walk from one end of the hospital to the other had left me very short of breath). They got the port first go and it was all done pretty quick so we left the building. Just as we were about to get into the car I got a call from the nurse I'd just seen saying my oncologist wanted to see me. So we went up, me panting and sobbing; exhausted, low on haemoglobin, out of breath and certain it could only be bad news.

I'd like to say I was totally wrong and that it was good good news. Well it wasn't really either. Judging by one of the tumours in my chest (in soft tissue, easier to judge growth) there appeared to be a very slight amount of growth, though it was within the margin of error so technically one cant say that there was any growth... or something... I dont know. I find it so difficult to retain the details of anything I hear or read. Other sites appeared to be stable, but not shrinking. So the decision was not to continue giving me a chemo which it appears the cancer cells are getting used to and instead switch to a new, very different protocol. I dont know if any of you look the names o these things up, but I'l post the name of the two drugs next post (I dont remember them today) just in case its of interest to people.

So its a little bit of a blow. On a bunch of bruises. No gonna lie, its been a very difficult year. Its becoming easier for me to understand people who rush into alternative therapies over usual treatment - the need to feel more involved and in control of treatment and illness is pretty dang strong. Dont you worry, I have no intention of abandoning the empirical evidence ship. Its just it'd be nice if the treatments would work a little longer, and I had more power in the situation than being driven (I cant even get myself to my own appointments) to various appointments.

So today I had one unit of blood and the new chemotherapy. It was a long day even without the second unit of blood (to be had tomorrow morning, there wasn't enough time today). I could barley keep my eyes open after a short while, as you may have noticed in the first few paragraphs haha. One factor which certainly contributed to the tedium of the day is the unusual increase in pain I experienced last night. Pain, or at least awareness of sites which would be painful without medication, has been gently increasing over the last week or two. I woke in the middle of last night unable to move enough to get the breakthrough pain on my bedside table. I could reach my phone thankfully. I'm more comfortable now and hope that I'l be able to do the things i was hoping to do this weekend. One of the pains is in my left arm and thought perhaps to be related to the painful dye injection/canula thing - apparently the dye can cause discomfort or something for a few days. I haven't experienced anything like it before, so I wonder if perhaps the vein was damaged from the pressure? Its high pressure and little veins... I dont know...

I've had some lovely days with some friends and family. I got to see my grandfather, youngest cousin and uncle for the first time in years so despite not getting a lot of time, it was still special. My nana was also down which is always lovely.

I cook most days trying to find exciting things to try. Such a great way to keep busy and active. Well, as active as my situation permits. I think I've covered the major events of recent weeks, I'l be off to bed now!

Friday, July 6, 2012

Since this morning

we went to hospital for my chemo appointment and where my nurse for the day was ridiculously well informed and helpful as she'd been a dental nurse for several years earlier in her career. She explained it was all probably caused by pressure on a particular nerve in the jaw. We went ahead with chemo which only took an hour and a half (a short day is a good day). During that time my onc doc came by to check out what was happening. He agreed with the nurse, but couldn't say for sure what was putting the pressure on the nerve, but knowing my luck and history and situation it is probably connected to my cancer. So maybe a new site. Trying not to dwell on that possibility and its implications though.

After chemo we went down to imaging and I had the xray of my jaw as well as the chest xray we were going to get next week anyway. By this point I was becoming increasingly sore in my back which was all quite strange. The rather unpleasant pain in my jaw and head was being managed by the hydro, yet my back was suddenly bad enough to make me really quite uncomfortable. This does suggest that its nerve pain which doesn't respond to opiates as well.

The palliative care people were called and my junistar (long acting hydro) was put up 8mg and permission was given for mum to give me a subcutaneous injection of short acting hydro. This hits harder and faster than oral and is very helpful with getting some control. I dont love mum doing it, feels weird, but its better than waiting an hour or so for someone to get here for a 5 minute procedure which someone here could do fine anyway.

So far I'm not getting any nausea or anything from the chemo yet which is a relief. Even more so now I have this back pain. Nothing quite like vomming when in intense nerve pain. Fatigue is really beginning to hit now so I might leave it at that. Oh, and also apologise for what was apparently very... creative grammer and spelling in this morning's post - you see I was typing it on my iphone and as usual it didn't occur to me to proof read my post. Hopefully it all made sense, and hopefully I wont spend the night waking every hour to take more breakthrough pain to keep on top. Sigh. And it had been such a good week. So exhausted. And I'm only going to get worse over the next few days.