Wednesday, April 9, 2014

Two years ago today...

Hi I am Lisa Lum and my younger and only sister Karen (37) died from breast cancer two years ago today.

Time does not heal it just puts distance between the memories of the hospital suite, the pain she suffered, the last days, the giving up of hope for recovery in exchange for acceptance of a new reality of life without Karen.

How are we doing? Life is not as full without her. There is joy mixed with sadness when looking at photos of her. It is hard to hear when the kids say they don't remember her as much. As a family we try and look after each other's pain and sadness. For her friends we try and understand what it is like to have a lost a best friend. And she was a great one!

We try and imagine a life without breast cancer in it and Aunty Karen growing old with the rest of us!

We will walk on Mother's Day - me, my husband Craig, and our 3 kids and we will fundraise to help them find a cure for this disease that has robbed our lives of the joy that was Karen and changed our lives forever.

If you wish to join us and wear a uniform - please contact me - Lisa Lum (Karen's sister) Caps are $20 posted with a tribute card to pin to your shirt. Wear a white tshirt and camel cargos.

If you wish to donate to our team's fundraising efforts a donation does not need to be grand - the cost of a hot chocolate, an espresso martini, a rum and coke, Ralph Lauren polo shirt, Kate Spade cocktail ring, Air ticket to anywhere... Some things that she loved!

Thanks to everyone who is thinking of our family at this time.
As Karen would say, "It is cryworthy."

A sister with a heavy heart but on a mission to save other people's sisters and Rock Star Aunties!

Lisa Lum
Captain - Karen's Army                                      

Monday, April 8, 2013

We remember her...What can we do?

Today we remember Karen - who passed away a year ago today.
We remember her in the way we knew her best - comfortable in her designer shoes and packing a whole life into half the time!

Here are some of my favourite photos of her that remind me how full of life she was.  It is really hard not to miss her.
My daughter Lucy has her hands, so does my cousin Melissa which makes me feel like she has left part of her here with us.  Hands to hold!

After a year without her and feeling that she made it to Heaven I feel that Heaven is on the other side of an invisible curtain right in front of us.
She has appeared in people's dreams with her hair back - long and straightened, texted iphones, sent cuddles through friend's dreams and spoken through mediums.  Many people have felt her presence or had signs from her.
All the messages and feelings we have received are that she got there safely and she is watching over all of us.
I often wonder how she feels looking through the invisible curtain and seeing how sad we are.
Would she be sad?
How would she want us to go on? 
Sadly - with chocolate? 
Sulking - watching Pride and Prejudice?
Or living life to full as she did - whether she could afford to or not?

I think we all know the answer but it is not always that easy!

I find solace in action.  I need to know that there is something I can do to prevent this happening to someone else's sister.

Last year we reaised $12,700 towards breast cancer research.  Last year we did something to help the cause.

This year we are trying to help all over again - with Karen's Army Team walking the Mother's Day Classic in May. 

Please sponsor us here via this link.

We are fundraising again to help others. 

Please join us or sponsor us - I am walking with my family and many of her friends and our friends.

A donation does not need to be grand - the cost of a hot chocolate, an expresso martini, a rum and coke, Ralph Lauren polo shirt, Kate Spade cocktail ring, Air ticket to anywhere...

So many memories but each one however small will help someone.

If you wish to join us and wear a uniform - please contact me - Lisa Lum (Karen's sister)

Thanks to everyone who is thinking of our family at this time.  We are all ok - but as Karen would say, "It is cryworthy."

With love and longing,
Lisa Lum

Monday, March 11, 2013

Karen's Army declares War on Breast Cancer!

Hi I am Lisa Lum and my sister Karen (37) died of breast cancer last year.
My husband Craig, my daughters Lucy and Daisy and son George are all walking the 4.5km Mother’s Day Classic, Brisbane on Mother’s Day to raise money for the National Breast Cancer Foundation.

We invite you to join Karen’s Army to walk with us, and fundraise and help us Declare War on Breast cancer!

This is the link to the Mother's Day Classic website to register to join us.

If you can't join us and would like to support us, here is the link to sponsor us.

Karen was diagnosed just before her 35th birthday and was treated (we thought) successfully until they found a 1 inch tumour growing in her brain at the time of her 2 year check up. She received radiation treatment for the brain tumour and it was not successful. The tumour returned and the cancer infiltrated her spinal cord and brain stem. She was hospitalised for not being able to walk, within days could not feed herself and within a month she passed away not being able to speak or swallow or move. For anyone who knew Karen this was her worst nightmare. Actually it was even worse than that.
My sister was awesome. She was funny and dry witted and had literally hundreds of friends who loved her like a sister! She was the best Aunty in the world. She loved food, her dog Barney, expresso martinis, Bundy Rum, The Reds - in particular Mr Greg Holmes who came to visit her after her brain tumour operation and walked her down the aisle as her pall bearer - "We love Greg Holmes"!, her Mini Cooper, her freedom, her nieces and nephews, her family, her friends, her home, handbags, clothes and shoes, shoes, shoes!
As her family we still cannot believe she is gone and we are struggling to come to terms with losing her, trying to work out why she died, not scientifically but philosophically. Why this is this her story? What will be her legacy?
This is where we will start: Trying to raise money to stop other sisters, daughters, cousins, mothers, wives and girlfriends from being stripped of life one sense at a time.
All we can do is raise money for research, remember her and try to save others. For Karen - there is nothing we can do about the fact that she is gone.
She has never wanted this disease to define her and she has kept an amazing blog diary of her journey up until she could not longer type about 1 month before she passed away. Finding humour in my tumour expresses the inexplicable emotions that challenged her every step of her journey with breast cancer.
Your were so brave and strong.
We hope you are at peace.
We feel your presence every day.
We are your Army and we will still fight for you.
We love you Karen and miss you every day.

Lisa Lum (Karen Pandy's big sister)

Karen's Army

Community Ambassador









Monday, April 30, 2012

The journey ends

Hi faithful followers of Karen's finding humour in my tumour blog.  For those who don't know -  Karen lost her battle with her tumour on Easter Monday night April 9th, 2012

She had been in hospitalised a week after her last post as the cancer was aggrivating her central nervous system and she could not longer walk and had minimal strength in both her upper and lower body.

Karen's condition worsened slowly over the last few weeks and throughout her treatment she and we her family were ever hopeful.  They changed her treatment plan midway as they feared the original one was not working.  Her stay in hospital was filled with visitors, watching MKR, using her phone to keep in touch with as many people as possible until she could not longer text. 

She was brave and strong and I don't believe she was scared.  It was Good Friday when it was obvious to us her last chance treatment was not working and by Sunday morning she was sleeping without waking up.

Her last night was Monday night and all her family and dearest friends were around her.  We had dinner, some wine and sat around her chatting about her and remembering the better times.  It felt like the last group of "stayers" after a great party all sitting around the table.  I didn't think she would go with a party going on around her.  We had to leave the room for the nurses to tend to her and when we got back she had turned her final corner and with us all there around her she passed away peacefully after only a few minutes.

Her funeral was on the Friday 13th April and was a great celebration of her life. She had lived 2 lives in her 37 years and had had a great time.  I don't feel she would have had many regrets.
Over 500 people came to say goodbye.  Greg Holmes walked her down the aisle as a pall bearer for her.  Expresso Martinis were served at her wake.  I helped my brother Shaun organise the funeral and wake and know she would have been happy!

I am Lisa, her sister and have been overwhelmed by how she touched so many people throughout her life - through her day to day interactions, inspiration and this blog.

Thanks to everyone who has been so supportive and kind to us over these last few weeks - they have been hard and the hard times are not over.

I am running in the Mother's Day Classic in her honour this year  and from next year I will organise a team to walk for the Mother's Day Classic - with our Mother and her army of friends.  I will keep her facebook account alive to communicate with her army.
If you would like to donate to Chicks in Pink to help support breast cancer sufferers like Karen please go to

I have posted her eulogy written by our older brother, Shaun and then by Sam Miller - her friend who represents her Army of friends.

If anyone needs to contact her family - please contact me Lisa Lum, on

Thank you,


Whenever I have been called upon to say a few words at a wedding or a birthday, I would always run my speech past Karen. I could always rely on her to give me her honest opinion, so I hope she approves of this one.

If there ever was an emotive speech to deliver or story to be read, in our family, Karen was the only one with enough composure to bring it home. However, I think Karen would say on  this occasion, ‘this is a very cry worthy situation and it is definitely worth a tear or two million.’

Karen was born on the 11th of September at the Mater Mother’s, the youngest of four children. Karen was always our baby sister and she enjoyed a very close relationship with each of her siblings.

We had an idyllic upbringing. We had many days playing together in the backyard or the pool, mum cooking big family dinners and we were treated to long beach holidays. Karen used to ride to the Coast in the boot of Dad’s station wagon with the luggage and the dog. Her mode of transport changed since, Karen bought her own car and rode in the driver’s seat with the dog.

Karen attended primary school where she made many friends for herself and her parents. She often fondly recalled learning about the titanic in year 3 and later on she submitted an essay called ‘No drums and no trumpets’. You would think a statement about Karen’s attitude towards people ‘banging on’ or ‘trumpeting themselves’. But no, it was a story about the mysterious murder of Shirley Shirley and just didn’t feature a drum or a trumpet.

She then went on to an all girls high school, where she learnt the value of true friendship, loyalty and acceptance and Sam Miller will speak about those days in a moment.

Following school, Karen commenced her chef’s apprenticeship  and went on to complete her training successfully. The hours were long and included weekend nights. So totally un Karen. She had said that her intensive training had drained her love of cooking. Ironically later on, Karen was to become a huge fan and discerning judge of Master Chef and My Kitchen rules. Watching MKR became such an important part of her evening routine in her final weeks. Karen never cooked much at home; I suspect she didn’t like the high pressure of Mum’s Kitchen’s Rules.

Karen then made a brave move to opt out of cooking and went back to school externally. With the support of Mum and Dad, she was able to gain a place to study in Marketing and Public relations. She earned her degree and gained employment there for a while.

Karen then got a job with an international recruitment agency. Her talents were soon recognised there and she was selected to be in their world wide top 50 recruiters which was a tremendous honour and was sponsored to a conference in Cambodia.

Karen always lived her life in the moment, she lived fully, she lived freely and she was comfortable in her own skin. She was not encumbered by a mortgage, was unconcerned by her finances and she had a job that she enjoyed. She was loved by her family, her army of friends and her colleagues.

Karen was devoted her nephews and nieces as if they were her own children. I am sure they will greatly miss their Aunty Karen. She deeply mourned the loss of her new baby nephew, who she’ll now be united with in heaven.

Karen loved her dog. Not everyone, including me, thought that cleaning up poop was a great thing to be doing whilst on chemo, but in the end he was a great companion and comfort to Karen.

Karen was the life of the party. Her confident vibrant nature and smile would light up the room. She could put people at ease with a friendly comment or a kind gesture. She was very funny.  Her wit could be very dry or self deprecating and she had that big loud crazy laugh. Making friends came easily Karen but she treasured each friendship. Whenever you had a conversation with Karen, you had a sense that she was with you, that she was listening and that she really cared. She was always at the ready to offer a shoulder to cry on, comforting words or wise counsel. She literally would drive thousands of kilometres to offer practical assistance to any of her close friends and family in need. She also helped feed the homeless at St Vincent de Pauls kitchen, provided counselling at the refugee centre and took meals to Brisbane’s flooded.

Karen was stylish; she loved designer clothes and shoes. I am told that she had a pair of Fendy shoes that despite the discomfort they caused, were her favourites. The point of putting up with that is little lost on me. Karen was merciless with her critique of my own fashion sense, particularly my recently retired pair of circa 1990’s aviator sun glasses.

Karen was fearless. I recently reminisced with Karen about one trip up the coast we did together. Unfortunately, half the way up the Bruce, I ran out of petrol. It was in the days before any of us had mobile phones. After politely informing me that she regretted my oversight, she promptly turned on her heal, took a few paces up the road, stuck out her thumb and hitched a lift with a passing car. At that moment, I was wondering how I would explain this to mum and was quite relieved when she reappeared some time later with a RACQ van.

Karen loved to travel. She was charged with escorting my Grandmother’s ashes to South Africa and was going to be funded for the journey. Karen being Karen booked an around the world ticket to Africa via the US, Canada and London. Apparently, they had a ball. If Granny can guide her through Johannesburg airport, the Pearly gates will be easy.

Sadly, soon after another trip away, this time to South America’s Inca trail, Karen’s life imploded with the discovery of a breast lump which turned out to be cancer. She wasn’t sure what was worse at the time, the diagnosis or Lisa in an attempt to cheer her up, took her to see the movie, Twilight.

Karen’s subsequent surgery, chemotherapy and radiotherapy were a tremendous ordeal for Karen, our family and particularly my mother. When her hair fell out Karen was devastated. However, she was able to soon see the funny side and she planted a picture of Kojak on her facebook page. However, not so funny was when dad would get the two of us mixed up. Karen carried her families and friends worries with her optimism and wry sense of humour. Karen was able continue to work in the weeks between her recovery week and more chemotherapy. She reclaimed her social life and got her eggs harvested with hopes for starting her own a family sometime in the future.

Her wit and determination have been captured forever in her Blog ‘Finding Humour in my tumour’.  It featured as the cover story on the Brisbane’s City News Magazine (Karen looked very cool on the cover), and the ABC website’s Health section. I am sure it inspired many women fighting breast cancer, particularly single women, as well as her family and friends.

Many of us will remember how Karen often delighted in playing the Cancer Card. It would guarantee her the front seat of the car, get her out of washing up after Christmas dinner and she used it to get her a picture with Alf from Home and Away.

Karen was a mad Reds fan before it was fashionable and she never missed a game. Her favourite player for many years was Greg Holmes. She greatly admired his loyalty to Queensland and his ability to smash ‘em. I remember when she attended their last game at Ballymore, it was raining and muddy. It was just a few days post a round of chemotherapy, her immunity was low, she had a fever and mum was unable to persuade her to stay home. As I said, Mad. Over the years, I think she was just as passionate about the 3rd half in the corner bar and then to the 4th on Caxton Street.

Unfortunately, just as Karen was finishing her chemotherapy, the Global Financial crisis saw the end of her Brisbane office, and Karen was out of a job. Karen climbed out of her sick bed and attended about 10 job interviews before she was employed by the Specialist recruiting firm. . Her employers and the whole team clearly loved Karen. They regarded her as a dedicated, enthusiastic and intelligent team member. They tell me her quick wit and charm engaged the most discerning executive and would often lead to a successful hunt.  I understand she entertained the team each morning with tales of her nocturnal adventures; such as Tuesday trivia, Thursday Bundy’s, and Friday’s Expresso Martini’s.

Towards the end of last year, Karen’s Portacath was removed. This was a device via which her chemotherapy could be delivered. Her hair was growing long again and things were returning to some normality. A bit niggling neck discomfort and a sudden severe headache and nausea was the result of the cancer spreading to her brain which required urgent surgery. Brave Karen bounced back from the surgery remarkably quickly and she was released from hospital in a few days.

A major highlight for Karen, in what turned out to be her last weeks of reasonable health, came just a few days following her homecoming. A friend had organised a surprise guest for morning tea. Karen writes in her blog ‘when the doorbell rang, I almost fell over to find Greg Holmes in the doorway with flowers. It was one of those rare moments in my life when I was stuck for words. My feelings were a mixture of complete shock and relief that it wasn’t Alf from Home and Away. Greg was the perfect gentleman but I felt like a bit of a fraud because I didn’t feel sick enough to warrant such a visit.’ Greg Holmes is here today, and I thank him for what he did for Karen.

Tragically, the cancer had quickly reappeared and spread through her spinal cord. She lost her mobility to walk and use her left arm. A new type of treatment brought pause to the advancing disease temporarily and thankfully spared her famous texting thumb which maintained her contact with the outside world. In her final weeks, Karen always maintained her optimism, grace and dignity despite increasing discomfort and disability.

I am absolutely devastated by the loss of my sister Karen. She has gone too soon.

However, there are many things that I think we can be thankful for.

I am thankful for Karen’s thumb

That we got to see the Reds win the final and celebrate together.

That Karen found the humour in her tumour

The tidal waves love and tangible support Karen and our family have received over the past 2 years, from Karen’s army of friends, friends of the family and the Church Community.

The precious time we had with Karen and the great memories we have to cherish.

That she knew how much she was loved by her family and all of her friends.

That we had time we had to say goodbye. That nothing was left unsaid, no emotion left unconveyed, that Karen’s suffering has come to an end and that she is now resting in Heaven.

I am also thankful for;

Mum’s incredible resilience and strength that enabled her to be in the trenches with Karen for every step of her struggle.

And For Dad’s unyielding belief that Karen would be okay. Indeed he was right.

I was there with Karen during her last evening on earth. The atmosphere was like being with the stayers at the end of a party. Karen was surrounded by her immediate family, Father Jerome, three of her closest friends, mellow music, pizza and wine. The lights were dimmed and there was the hum of good conversation (mostly Karen stories). I am sure she loved her send off. Typically Karen didn’t leave when it was time, she waited until well after the oldies had left and the youngies were tiring. She held out for one more break through cocktail and then she was gone.

Karen will be forever young and forever beautiful. We will miss her terribly.
 Eulogy - by Sam Miller
Thanks Shaun, my name is Sam Miller,
I have been friends with Karen since grade 8 at Loreto where we bonded outside the Home economics classroom, by outside I mean literally, we were banished outside, due our Mothers sewing our animal print pants and us having to unpick the pants, which took an entire term.
Today the Pandy family asked me to represent a very important part of Karen’s life, her friends. I stand up here, representing the “Army” of friends that have gathered today, not to mention her 299 Facebook friends that Karen treasured and loved during her 37 years of life.
I can honestly say I’ve never meant anyone with so many friends, but my dear loyal troops, you were all so important to Karen, in so many ways. During the past few years she thrived on your love and support.
I’d like to start off by given an insight into what you all meant to Karen. She would always talk to me about her friends – new and old. She would never just say “Mary and I”, she would say “My Friend Mary and I went to lunch for 3 hours and we talked for a further 3 hours”, hmm the talking for 3 hours never surprised me, but I often felt guilty that I didn’t know - my friend Mary - as she would be very important to Karen.  But I realized over the years for Karen using the word friend was her way of connecting with people, it put the relationship at that special level, you had Karen’s respect and she valued you.
Having so many friends was a gift for Karen, she was so open to meeting new people and was so warm and comfortable with them.  Her social network was huge, in her blog she would mention how wonderful it was to know that so many people loved and supported her and this kept her going on many of her dark days.  She took great joy in the diverse range of friends she had acquired and loved organizing events each weekend, many of which became adventures. This was exciting to her and made her life so full.  She would go out at least 3-4 times a week, which would exhaust a normal person, but not Karen, I think this is why she was the faster texter in Australia, when you have over 300 contacts to keep up with you need to be able to text quickly! We are not the only ones to notice her phone lovathon, My 6 year old daughter made a comment yesterday that she hopes Aunty Karen can take her phone to Heaven, so she can text her to see what it’s like!
I always felt she loved having so many people whom she connected with and who could share many moments with her. This was Karen’s life and that’s why friends were such an integral part of who she was.
I remember her 354h birthday party, it was more than just a birthday it was a celebration of her strength and courage with her battle against breast cancer. The preparations began and the arduous task of who to invite was an initial issue.  From memory, it was a decided a smaller party would be best, for most people that would be 20-30 people for Karen it was 90 of her closest friends.
With the arrival of Barney social events were now scheduled around the outings to  dog parks. The inseparable pair held ‘rock star status’ on Brisbane roads, driving around in Cookie with this Hairy horse. It was a sight to be seen, with Karen trying to restrain Barney, which was a difficult task while driving, in many cases people would take photos because it looked like Barney was driving!
 In my mind, being Karen Pandy’s friend is a special privilege that we all enjoyed. Which brings me to the second part of my speech today, what it meant to have Karen as a friend.
 The wonderful Ann-Maree, summed it up beautifully, she is the benchmark of a Best friend. You often hear people talking about having a good friend and what they have done that makes them special, then someone might trump them with another friends good deeds but as Ann-Maree pointed out, no one can trump Karen as a friend – she was the benchmark friend, the friend of the highest standard. There are so many stories of Karen being there for people in times of need that it would take me 2 hours to get through!
But I would like to bring up a few; the first one that comes to mind is a story Karen’s faithful friend Karyn told. It was during the Brisbane floods and it was mayhem, traffic was a nightmare, Karyn and Mark had just renovated their lovely home at Graceville and the floods had hit them badly. The first thing that Karen did was jump into Cookie to try and help, it was an ordeal, a 3 hour journey, but this didn’t deter Karen, she never once thought about turning around, she wanted to be there to help her friend.
Ann-Maree talked about the time Karen flew to Sydney to be by Ann-Maree’s side, Karen had just finished a round of chemo and was very ill but nothing was going to stop her support her friend at this time.
Karen was the best person to pick you up again, her magic smile would light up your heart instantly and her razor sharp wit was the best cure for any situation. Sometimes that wit was so fast I would be laughing at the first one liner and miss the others, one day she said to me, “Mate, keep up, your missing some of my best work.”
 This benchmark of friendship became the norm for my family. As you all know Karen was an awesome chef, she had that acute ability to taste and smell everything item that was in a dish. She shared this love of food with my husband who is also a chef. One day Karen received the emergency call from Steve, in Steve’s true Gordan Ramsay style he yelled down the phone “ Pandy get here now I’ve burnt the cake” Karen raced down to our house, she entered the kitchen and with a sigh of relief my mother in law said to everyone,  “the bridesmaid to the rescue” And Karen replied, “ I didn’t know it was a job for life!”
 But that’s what Karen did.
 Her charm and vivaciousness was one of the best things, I loved about Karen.
Karen’s greatest Love

On behalf of the army of friends I’d like to finish today by talking about Karen’s greatest love, her family.  Everyone hear today would know something special about a member of the Pandy family. One of her favorites was her mock disappointment when George, her nephew, became old enough to realize that his aunt couldn't be his girlfriend!
 To Craig, Shaun and Lisa, she absolutely loved having you three as her siblings.
 She had a special bond and love for each of you.
 Craig, she idolized you, were always the big brother.
 Shaun or Shaz bootie she had a special connection with you on so many levels, you were the voice of reason.
 Lisa she adored you, she would have been so proud of you over the past month, I remembered she used the words “remarkable” to describe your love and support.
She treasured all the little bits of the kid lives that are important to parents but they were also an essential part of Karen’s life.
 And finally to Helene and Geoff, your relationship with Karen is best summed up with her extended time living at home.
 I would often ask, “don’t you want to move out”
 and she would reply, “Why? My parents don’t annoy me!”
 She loved and admired their marriage, she would say after 40 years my parents still go on date nights. She said that her parent’s relationship with each other was what she felt love should be and she would never settle for anything less.  As Karen became more ill she said that the best thing in the world is a hug from your mum or dad.
 She was a great mate with Geoff, she was his protector, although not a fan of his jokes! Helene she loved your outlook on life, she loved your food, she loved your laughter, she loved your kindness, she was fully aware of your loss earlier in your life and how you nourished and loved your children. Over the past few months, Karen would often mention how awesome, amazing and brilliant you were during this time that she loved you and Geoff so much.
I would like to make a pledge on behalf of the army that we will continue to support the Pandy family just as Karen supported all of us.
 And finally I would like to finish with one of Karen’s wishes for today.  Many years ago, prior to Karen having breast cancer, Ann-Maree and Karen had a random conversation and it went like this:
 Karen asked, “ Ann-Maree what would say at my funeral?”
Ann-Maree responded with surprise and dismay,  “why would I be at your funeral?”
 Then Ann-Maree paused and thought for a minute, and then asked,” Well, what would you say at my funeral?”
Karen replied quickly  “Nothing why would I be at your funeral?”
 10 minutes passed and out of the blue, in the middle of a different topic, Karen said ”But if you had to be at my funeral, make sure you remind everybody how long and thin my legs were.”
 My friend Karen, with the long thin legs, you will be missed.

Friday, March 2, 2012

Not the news I wanted.

I am not sure where to start with this entry. It has been a devastating week. I had the lumbar puncture on Tuesday. The benefit of having a very active imagination is that the reality of the situation is rarely as traumatic as you had made up in your head. My mum and I headed off to the Mater for the day procedure. The weakness and numbness had gotten so bad that I now need help dressing - so a lucky nurse helped me into my backless gown and the world's biggest paper undies. I am not exaggerating about the undies. They literally came up to my armpits. I could imagine Lady Gaga wearing them with a belt and a pair of thigh high boots. The lumbar puncture was quite an uncomfortable procedure, but not for the reason I would have thought. I have been having some pretty awful toilet issues, so Mama Bear has had me on the stewed prunes. In hindsight, not the best breakfast choice when you are having a procedure done on your lower back. Lying on my belly on the table, I could feel the rumble coming, so I had to clench my bottom as much as I could to save the poor doctor who was about to stick a needle into my back. He kept telling me to relax and I kept thinking to myself 'you really don't want me to'! It is very difficult to keep your back relaxed while clenching your bottom tightly, I would encourage you to try it.

After the procedure, I had to remain flat on my back for 4 hours in hospital and then until lunchtime the next day at home. The time in hospital passed quite quickly as I was kept company by Mama Bear, my sister and a good friend. Now we just had to wait on the results. I did ask what they were testing for and they were looking for any neurological disease and malignant cells. I didn't really give much thought to the malignant cells, I was more worried about the degenerative diseases with no cure. The next day, I was able to sit up and have lunch with mum and my sister, which was a treat, until I threw up at the table. Luckily my sister has 3 kids, so she didn't really bat an eyelid at the table vomit. Mum rang my dad and he came home straight away. Surprisingly after all that lying down, all I wanted to do was sleep. After about 40 minutes, Dad came into my room and told me that it was time to go to the Wesley Hospital. I was a bit confused about this and started to worry when Mama Bear, my sister and one of my brother's also walked in the room. The results of the MRI showed malignant cells in my spinal fluid, which was affecting my central nervous system and causing all these issues. They all hugged me and cried. Instead of my afternoon sleep, I was off to the oncologist and neurosurgeon again.

I was told that I would need chemo directly to my brain, which would require a shunt to be inserted on Thursday and chemo would commence on Friday. I was told the treatment is unlikely to result in a cure, but was about limiting further damage and maintenance. I hope the damage that has already been done can be reversed because I am down to typing with one hand and am making lots of mistakes.

I will continue this blog tomorrow about the operation and the first chemo. The rugby is on tonight and I only have 20 minutes to get prime position on the couch. Go the Reds!!

Sunday, February 26, 2012

Bad news and worse news.

It has been an interesting week. I had been feeling better, apart from the annoying limp which I had developed on Saturday. By Tuesday the limp had developed into pins and needles in my left pinkie and ring fingers and the weakness in my left calf was increasing. I saw my neurosurgeon on Thursday and he suggested getting an MRI done of my spine and neck to rule out anything sinister. I wasn't worried - I thought life couldn't suck that much. I booked the MRI for Tuesday of next week, which would give me enough time to psych myself up for going into that tight white torture tube. When I woke on Friday morning the pins and needles had spread to my entire left arm and my pinkie and ring fingers on my right hand. The weakness in my left leg was also worse; I had to sit down to put my pants on and couldn't push my foot into my shoe. I rang the neurosurgeon on Friday afternoon and left a message for him about the developments. I still wasn't too concerned about it all and headed out with my lovely housemate.

Much to my extreme disappointment, the neurosurgeon rang back to say that I should head into the Mater Private Emergency and have the MRI done immediately. It wasn't quite the Friday night I had planned. Armed with my parents, we headed into the hospital. It felt strange going to the emergency department again, but at least this time I wasn't in my pajamas, I had a bra on and didn't feel like my head was going to explode. Another bonus was that since I was already bald, they didn't have to shave chunks of hair from my head. I had an MRI of my head, neck and spine which took about an hour. Lying in the tight white torture tube, many thoughts ran through my head; such as why do they give you headphones to listen to music when you can't hear it over the bang, bang, bang of the machine? What happens if you have to scratch something? My thoughts also ran into what could be causing these issues. I thought of every degenerative neurological disorder with no cure and thought about how I could deal with that diagnosis. After spending quite a bit of time contemplating this question - I still don't know the answer.

As the MRI was done at 10pm, I was admitted to the hospital and spent the night in a shared room on Friday. I do not find hospitals to be the most peaceful of places, especially when you are in a room with a complete stranger who snores, expectorates loudly and likes to sleep with the light on. I didn't realise I would be over-nighting on the luxurious Ward 9 of the Mater Private, so I wasn't prepared with my ear plugs and sleep mask. I managed to get settled at about midnight and about 10 minutes later, an alarm started going off in the room. This happened about half a dozen times between midnight and 6am, so needless to say, it was not a restful night at all. After the first few times, I managed to work out that the alarm went off every time the lady rolled over, bent her arm and disrupted the flow of her drip. You would think that if I could work it out from behind the grey curtain (which is unfortunately not made of concrete), she could work it out also.

I was wide awake when my neurosurgeon came to visit me early Saturday morning with the results of my MRI from the night before. The good news was that my spine and neck were all clear and they couldn't see anything that would be causing these sensations. The bad news was that the sensations were not caused by swelling or scar tissue, so further tests would be required as would a visit by a neurologist. He then held my hand and put his other hand on my arm and told me that there was other news. I knew this was a bad sign - I could see the cancer face forming. The worse news is that the MRI of my brain showed that the tumour has returned. Apparently I have super human powers that can grow tumours through radiation. To say that I was upset about this news is the understatement of the century. I felt like I had been punched in the guts. I am still struggling to wrap my head around this news, but as always I will keep forging ahead with positivity - I just have to remember where I put it.

I was examined by the neurologist and he recommended that I have a lumbar puncture to determine the cause of these sensations. The thought of having a needle thrust into my spine gives me goose bumps, but it is unavoidable. I just hope the trauma and pain results in a good outcome. Surely life couldn't be that cruel. Once they have the results of the lumbar puncture, they will be able to determine the course of treatment for the new tumour. I will have another visit to the tight white torture tube in a few weeks and see if the tumour has grown, shrunk or disappeared. Depending on those results, I may need another surgery to remove it. I am hoping that it magically disappears as do the pins, needles and numbness.

Once again the news has spread and my family and friends have rallied around me. My eldest brother flew up from Canberra to surprise me - which was awesome. Both brothers came over last night and watched the Reds defeat the Waratahs. Surrounded by friends, family, snacks, beers and rugby - I felt almost normal. That was until I jumped up to celebrate the last minute winning try to the Reds and promptly fell over. Must remember not to do that at the game on Saturday night. I have spoken to quite a few friends and lots of family and there have been lots of tears. Some people have apologised for crying in front of me. I totally endorse crying, this is a very cry-worthy situation. This has come as a devastating blow to me, my family and my friends - I think it is definitely appropriate to shed a tear or two million. I certainly know I have in the last two days. I am just going to focus on getting through each day this week. First is to get through the lumbar puncture on Tuesday and rejoice in the clear results on Wednesday. Also, the first home game of the rugby season is on Saturday and my aim is to get there and get home without falling over.

I would ask the people who are kind enough to read my ramblings to pray to what ever God or religious leader you believe in to pray that the lumbar puncture is clear and this tumour magically disappears and I do not have to have my head sliced open again. If you have a spare minute to squeeze in a fast growing hair request, that would be most appreciated also.

Tuesday, February 21, 2012

First week of recovery mode.

It's been one week since radiation finished and so far my scalp seems to be holding together pretty well. Pre-radiation I was advised to expect my scalp to blister, peel and weep - but none of those things have happened so far (touch wood). I am putting down to the fact that I rub about 43829834kg of Moo Goo scalp cream into my head twice a day. I don't know what is in that stuff, but I am sure it has some magical quality. Overall, I am feeling not as bad as I had imagined. I haven't had the vomit monster come and visit me again. I have been feeling nauseous, but luckily I have managed to ward off the vomit monster with a range of drugs. I still feel dizzy at times and feel like I am going to lose my balance, but luckily Barney is never too far away so if I do fall, I will have a soft landing. I am on a reducing dose of steroids and seem to be coping with it well. I still feel angry and short tempered, but instead of my poor mother bearing the brunt of this, I am aiming it at Thomas and Carla from My Kitchen Rules.

The overwhelming feeling I have at the moment is exhaustion. I just feel like I have zero energy and the same amount of motivation - which is so unlike me. I feel like staying in bed, going to sleep and waking up some time in June when I am back to normal. Although, that would mean missing a few of the Reds home games, which of course I would never, ever do! I have been out a few times for short periods and then find that I have to come home and lie down for a few hours to recover. I look forward to the day when I can go to brunch for an hour and then still have energy to do something else. A friend of mine invited me to head up the coast for the day and my first feeling was that I felt nervous about going out for so long, so far from home. I have got to snap out of that! Hopefully, I will be up for a beach trip in the next few weeks. I have been feeling a bit down this week and not wanting to do anything. I have noticed that I have been struggling to remember words, people's names and have been writing down wrong numbers. Also my balance has gotten worse since the radiation finished. Add to that I have hurt my back and now walk like I should be wearing a cloak and living in a remote bell tower in some dark Eastern European county. I am really bummed about not being able to drive for another three months. So, I am taking things in hand and going to try and do something about it. I am going to see an Occupational Therapist who specialises in post-brain surgery and have an assessment. A friend of mine pointed out to me that essentially I have had a brain injury and that there are things I can do to work on it. I would hate to get assessed in May and be told that I can't drive for another three months!

I hate this feeling of running on empty. In true Mama Bear style, I am on every vitamin and nutrient that boosts brain function and recovery known to man. I think there is a correlation between how good something is for you and how gross it looks and tastes. I am on this "super food powder shot" which apparently is amazing, but looks and tastes like dirt. It isn't that bad, once I block my nose to drink it, wash it down with a glass of water and follow it up with a double Kool Mint chaser.

Tomorrow I have my follow up with the neurosurgeon, so will be interesting to hear what he has to say about my progress. I have been doing my balance tests and they have been pretty bad. Although, mum also tried the balance test and let's just say I don't think she is going to qualify as a deep sea diver anytime soon. It is the first Reds home game next Saturday and my aim to to get there and not fall over in the process! Here's hoping the boys will follow up their victory over the Tahs with a squashing of the Force.