My Blog

Creating Memories

I apologise to Blog readers for not updating this sooner. The truth is I have written this Blog months ago and have been putting it off for various reasons. There has been so much happening that I have been feeling a bit overwhelmed.

Christmas has always been my favorite time of year. I have many fond childhood memories of Christmas. It was important to both Barry and I that we all enjoy Xmas and create another beautiful family memory for our kids.

Charlie turned 7 on Dec 30th and once again it was a special day. I have always disliked video games and vowed not to include our kids in this wasteful pastime. Barry convinced me that by buying Charlie a Nintendo DS would not be the worst thing in the world. Turns out he was right. Charlie was so excited when he opened it and declared us the best parents in the whole wide world. He then said, "Cool Mum, now I am not the only boy in my class without a DS."

January 2010 Bring it on!!!

January is fantastic In Australia!!! Vibrant energy everywhere. People running, surfing, swimming, building sandcastles, having coffee, sailing, bike riding, having picnics, etc. It is hard to feel sorry for yourself when you live in this beautiful Country. The beach has a powerful positive affect on ones psyche.

Australia Day January 26th

A huge day for celebrations.   Barry and I  decided to take the kids on

holiday to a Central Coast resort and have some R&R. We had so much fun together. The boys loved it, especially the swimming pool and slide. We had to drag them out of it everyday. We celebrated Declan's 3rd Birthday and he loved his presents and cake.

Manly Council held it's Australia Day Awards and nominated Audrey's Wish Benefit as Best Community event. It won!!!!

A proud day for me to honour everyone that worked so hard and gave so selflessly. Annie, Elise and the rest of our great friends had put in a huge amount of work in making Audrey's Wish benefit an overwhelming success. It was a night that we will never forget. They say that having a good support network improves your survival rate. If that is so, I have nothing to worry about.

Roller Coaster

I woke up on the last day of our Central Coast holiday and found that my balance was largely affected.  It was the oddest thing. Cognitively, I was o.k. but found I could not walk, stand up or get my balance without difficulty. I called Helen, my Oncologist, and she suggested an emergency CT scan back in Sydney. A couple of days later they still could not find the cause of my balance problem. Several tests and trips to Dr Dizzy ( My Neuro

Specialist) did not uncover the reason. He thought perhaps I had a minor stroke and it was slowly getting better. He advised me to do plenty of rehab and learn to move again. He suggested that the CT scan did not show an aneurism because it had most likely healed itself. It was a slow process and I am still not 100%, but I can live with it.

Family - February

Barry's Parents have left to return to Canada after an 8 month visit. It was sad to say good-bye but we were so lucky to have had them stay for as long as we did. The kids really got to spend some special time and bond with them. We will be forever grateful for their help in so many ways, not to mention their unconditional love.

Escaping Statistics

March 17th. It has been exactly 1 year since my diagnosis and guess what; I am thrilled!! I made it! I knew I would. My counsellor says that I should be aware that some people feel depressed and helpless around this time. Are you kidding me?? I feel quite the opposite. I made it and plan on beating this.

I remain on chemo and continue to have an MRI every 6 weeks. I have had plenty of challenges health wise, but have been lucky overall.

My recent MRI has come back with what looks like a tumour reoccurrence in my brain stem. Bummer! It was tough to pass this news onto my friends and family.  My surgeon says he will not operate as the risk of impairment is too high. My Oncologist says adding Thalidomide to the cocktail of drugs I take, will help achieve a couple of things. Firstly, it helps stimulate my bone marrow so I can continue to stay on chemo. Secondly, prevent any further growth by blocking new blood vessels. It has plenty of side effects but ones worth the risk.

Calgary Benefit

Our beautiful friends/family put on a remarkable benefit in Calgary, Canada for me. Thanks to modern technology I was able to Skype and address hundreds of people at once.

Like the Australian benefit, it was a huge success. A big thank you to everyone that passionately spent time, money and energy doing this for us.

We really appreciate it. I will thank you all personally when I return to Calgary hopefully next summer.

Easter

Who doesn't like the Easter holidays? We had lots of fun as always, collecting all the treats that the Easter Bunny left behind. I swear when we move there will be hundreds of tiny chocolate eggs discovered. Not sure who had more fun; me or the kids.

May 2010

Another milestone. My 43rd birthday! My friends and beautiful husband surprised me with a fantastic birthday party at the Manly Pier Pavilion. I thought it was just going to be myself and a couple of girlfriends but it ended up being a party of 16. It was a fantastic day and a very happy occasion. It was one of the first times in many years that I felt transported away from my normal life for a short period of time. It felt like I was in an exotic location somewhere and I actually forgot I had this dreaded disease. Friends were the best part of the day but the food was spectacular also and the view simply stunning. I went home that evening and slept like a baby with not a care in the world.

Barry surprised me later with a weekend away on my own at a five star hotel in Circular Quay. My friends thought he was MAD! Surely I would not want to be alone in a Hotel all weekend. They insisted on baby-sitting and letting him come join me, but he insisted that it was exactly what I wanted and needed.  He was spot on.  Solitude and down time was exactly what I needed.

Sleeping through the night has been tough lately, as anyone with young kids can understand. I spent the weekend getting room service, taking long, hot, uninterrupted showers, sleeping through the night, sleeping in past 5:30 am J, reading, writing, meditating, watching movies (yes...chick flicks), and watching the sun set over the harbor while drinking a cup of tea on the balcony. Bliss!! I felt as though my body and soul was rejuvenated.  This was the first time I have done something like this in 7 years. After spending 24 years together, Barry knows me best. The best part was that I did not worry about the kids as I knew he was taking good care of them.

Brain Cancer Week - May 2010

I spoke on a panel with Julian Huxley ( A famous Rugby Player) at a Brain Tumour Conference representing a patients perspective on the disease. It was a great day and there were hundreds of people there. My Oncologist, Helen Wheeler, spoke also. It was really informative and I was happy and honoured to be chosen to speak. I felt relaxed and enjoyed the day immensely.

Winter 2010

The weather has turned cool and wet. Staying warm is near impossible as my blood levels are low. Most days I look like an Eskimo wrapped up in layers upon layers. My recent MRI has been unchanged for the most part however, there is more swelling this time. I guess this is why I am getting more headaches. I should be starting Thalidomide in a week or so. I am also back on Temodal (Oral Chemo) this week.  I will endeavour to keep my Blog updated now that the kids are better. Fingers crossed.

Many thanks to all of you who have shown me so much love and support.

Much Love Audrey xx

 

Nov/Dec 09
 
Met with my surgeon and he seems pleased with the recent scans. I mentioned pain in my jaw and he said it was probably due to having to cut through my chewing muscle during surgery. Something I can deal with.
 
Christmas parties/kids parties/school activities keep us hopping. My two sisters Theresa and Carol came for a three weeks visit. It was really sad to say goodbye to them. I was sick for one of the weeks they were here and the time flew by really quickly.
 
I have hit a bit of a wall with my treatment.  My Oncologist has suspended my Chemo until she can find out what is happening with my bone marrow. Basically she said they are doing me more harm than good as my Bone Marrow is not recovering at all. Jan 5th I will have a MRI and follow up with Oncologist to reassess what to do. She has told me most likely a bone marrow test is in order. Take each day I guess. It appears it is out of our hands.  There are 4 more days until Xmas so I plan on enjoying  it fully with family and friends. Merry Christmas Everyone!!!
 
Love Audrey xx
 

 Oct/09
 
 It has been 6 months since my diagnosis and so much has happened. I guess that would be one of the reasons why I feel like a totally different person. Living day by day, week by week is a new philosophy for me. One that is taking time getting getting used to. My September MRI was clear. My Oncologist said that she plans to keep me on Chemo indefinitely. If she takes me off of it she thinks the tumour will come right back. The trick will be to get my bone marrow working again. My bloods remain dangerously low and to date have not recovered like they should. I have also had a couple of more minor seizures. My seizure medication has once more been increased to help with this. I find myself dreading going in and out of the hospital now. It is so upsetting for the kids. We seem to take 10 steps forward and take 20 back. Still I am grateful that I remain well enough to do most things.
 
We spent a weekend away at a friends cottage in Kangaroo Valley which was on their farm. It was just what we needed and the kids had a ball looking at cows and playing outside all day and only coming inside when it was time to eat. Thank you to our beautiful friends for inviting us down.
 
My sister Joan came to visit for three weeks from Canada. It was great to see her and to spend time together. Made me a bit homesick for family when she left.
 
 My husband Barry and our dear friend Vern rode in the 24 hour mountain bike relay in Canberra. The Campari Crazy's Team with Dean Gale and company  also rode and both teams raised money for Audrey's wish. Thank you to everyone as I know it was physically challenging.
 
The cooking classes at St Mary's were a lot of fun and the kids really seem to be enjoying it. I love  listening to them laugh. Great medicine for the soul.
 
I decided to host a Halloween party for the kids. We ended up with half the neighbourhood but the kids had lots of fun looking at all the  spooky decorations in the yard, bobbing for apples and trick or treating around the neighbourhood.
 
At this point I am on Oral Chemo one week on and one week off. My bloods remain low but I am relatively healthy so I cannot complain.
 

Time has flown by so quickly these past couple of months.  It has been an incredibly busy time.  July’s MRI was clean  with no sign of re-growth.  Whew!!!!   My bloods remain low but they have not had to transfuse me yet thank goodness. 

The August 3rd hospital admission was a bit rough as I ended up quite sick after the treatment.  It made me realize how lucky I have been tolerating the earlier treatments.  Homecoming is always a blessing especially after a stay in hospital.  I  did an interview with the Telegraph this week and they took a cute picture with the kids in the wheelbarrow.  Still not used to seeing pictures of me looking so different!  Barry's Mom  and Dad are here and they are simply a Godsend.

I have been the subject of a documentary about brain tumours filmed by a lady named Karen Willing and her crew from Screen time.  They were a lovely and very professional crew to work with!   Karen approached me about doing a series of documentary interviews for ABC and now that it is finished we should get to see the completed film in the next week or so.  Being filmed without hair, makeup, etc etc is like having your ego stripped bare and is an interesting and revealing experience.

I have decided to try and volunteer at the school and introduce some healthy cooking classes for the kids.  The kids love it and so do I.  It is great therapy for me.   It’s a very exciting project as there is much work to do in school canteens across Australia.   This is part of my plan to create some great memories for my kids as well as others. Charlie and Jack love seeing Mom at the school doing stuff and I love being there.

Wow August 15th Benefit!!! Where do I begin?? Held at St Patricks Estate which is an amazing venue and very special in itself.  I can see why Nicole Kidman had her wedding reception there. I have to say it was simply a night that Barry & I will never forget! There was over 300 people there.  I was not sure I would be able to get through the night without becoming really emotional but I  was fine. I was vibrating from the energy and love that was in the room - even for  weeks afterwards.   I am still in awe and a bit speechless. A first for me. There were so many beautiful parts to the evening. 

There was a fantastic fashion show by Lotus Blue (An upscale ladies retail dress shop owned by my dear friend Suzanna. She did an amazing job of styling the Mums of St Mary's. They certainly could have passed as professional models!   I was so appreciative of them getting up there - which is not an easy thing to do in front of over 300 people.  Well done ladies! 

Annie, Elise, Vicky and her students did an incredible job. It was  flawless and professional but also intimate and personal. The entertainment was beautifully orchestrated and the band very talented. They dedicated a  few songs especially for me which I found very touching, especially when the violinist looked at me with tears rolling down his face.  The food was fantastic and Felix, the head chef, did an amazing job.The chocolate fondue at the end of the evening was delicious. Yummmm. There were many heart felt speeches and lots of tears. Elise did an exceptional speech that really touched my soul.  The two auctions both live and silent were extremely successful.

A  highlight was when  a friend of mine bought a wooden wishing well (made by one of the student's 85 year old Grandfather) for an outrageous amount of money and then gave it to our family. I will always  cherish it and  am in the process of developing a family ritual with it.  Thank you Karen and Chris .

 I was surprised to see some dear friends of mine Bridget and Digsy. I met them a few years ago when Digsy(who was 13 at the time) was diagnosed with Leukaemia.    He was a huge inspiration to me as he always had a kind word and a smile despite the pain and misery he was going through. I am so thrilled that he is in full remission and have no doubt that he will stay well forever. He came up on stage and told his story and it was a very touching moment. Cam, a friend of mine, bought a celebrity surfboard and gave it to him at the end of the evening. He was so thrilled!!! It was fantastic to see him so happy and so well.  It was  a  very selfless gesture which still brings a smile to my face when I think about seeing the look on Digsy's face.

Vicky bought Six buckets of toys for our boys  You should have seen their faces.... We put some away because there were so many of them. She has boys and bought some great presents. Mike Baird who is a local MP got up and had a great speech that was so sincere, it melted my heart.

Mostly the thing that still puts a smile on my face is knowing that a whole team of people decided to do this for me and my family. You know who you are and I cannot thank you enough. I feel so blessed to have so many very special friends that have really gone above and beyond the call of duty. It has made this battle much easier  knowing I am not in it alone.. That feeling in  in my heart forever!! Thank you for such a beautiful gift of love.
 
 My bloods have been too low to have Chemo so they had to postpone my treatment by a week to let my levels recover. My sister arrived this week  and it was sooo great to see her. I think she was a bit shocked to see me looking so well. Apart from a few physical changes, I am more or less the same, just at a slower pace. The boys loved hanging out with Aunt Corrine and she played lots of games with them and spoiled them rotten. It was sad to see her go home. I know she will tell the rest of my family how well I am coping and put their fears to rest.
 
I have just completed my last ICE protocol. WOOOHOOOO It was cut short as my bloods were too low to accept a full dose but I was thrilled to be out in a couple of days. I cannot tell you how thrilled I am to be finished this stage of treatment. I was really starting to dread the hospital trips every couple of weeks and started to become a bit flat emotionally.  I have had many scares of various types in the past couple of months but overall am coping well. Seizures remain my biggest threat. So far I have had a few but thankfully they have been minor ones. I am now having a four week break to recover,  then an MRI. Depending on the results of my MRI and my blood results, I should resume Oral Chemo 5 days a week for 6-8 months. Hopefully, this can be managed from home.  
 
The weather is becoming warmer  and my Sister Joan is coming out in three weeks;)  Apart from feeling very tired I am thrilled to be able to do most everything that I normally do. The boys are doing well and loving having Nanny and Poppy here as well as visits from my family.
 
Will keep you posted after my MRI. Love to you all  A xx

It has been roughly 16 weeks or 4 months since my diagnosis. Since then a lot has happened. I have had lots of visits with the Oncologists and many trips to the hospital for various tests and appointments.

The most exciting news is that my first Post Radiation MRI scan came back with no sign of regrowth. Both Oncologists were sure that the tumor would have grown back. They say it is considered a small win but I think it is a huge win. It means that I was able to resume treatment without undergoing brain surgery again. Whew!!!

My Chemo Oncologist did however change my protocol and decided to pull out the, "Big Guns" called "ICE" It stands for Isofamide, Carbuplatin and Entopside which are all platinum based Chemo's.  I was originally shocked as this was the first time I had heard about it. Basically, she felt that this was the only real chance I have of putting the cancer into sleep mode for a while. They do not like to use the word remission as  it can make the patient too hopeful???? It requires hospitalization for a week every three weeks. It is 24 hour transfusions that go night and day. It is not pleasant but it is not meant to be.

My first cycle of ICE went smoothly and I was out by the evening of the third day. They originally put me into a beautiful private room overlooking the harbor bridge. It was a stunning view. By 6 pm that night I was told that there was an infectious patient that needed my room. I was then transferred into a ward with three elderly men. All of whom had advanced Cancers. One man was going to Palliative care. It was very hard to stay positive during these three days. However, not one to feel sorry for myself, I meditated and had lots of visitors to cheer me up. By the second day I was feeling fine. In fact I was thrilled that I was not feeling sick. Looking around I quickly realized that there is always someone who is worse off than you.

 Barry had to give me a shot after I got home to boost my white blood cells. He was so brave and did it with ease. It really stung .  I was so happy to be home with the boys and noticed that they hardly seemed to miss me this time around. I guess all of our planning had paid off.

With the change in protocol we decided to ask Barry's parents to come and stay with us to lend a helping hand. Barry's Mom arrives on July 24th and everyone is looking forward to seeing her especially the boys. Barry's Dad will follow shortly in Sept. I have just received news that one of my sisters are coming out in August and then more family  to follow in the following months. We have so much to look forward to.

 I just got out of the hospital from completing my second cycle of ICE. I was lucky enough to get a private room the whole time. Makes a huge difference. Unfortunately, I was quite affected by the side effects this time. Very sick for three days. Partly this was my own fault as I agreed to a faster infusion to get me out earlier. Plus they increased my dosage this time around. I Will not make the same mistake next time. I won't be so impatient.

 Jack our middle child was heartbroken when he saw my head bald. He covered his eyes and clung on to my leg saying, "Mummy I want your long pretty hair back, I feel really sad." My heart broke..... I told him Santa would give me some hair for Xmas maybe. He then cast a spell on me and turned me into a stone. Thinking he was playing a game, I said what did you turn me into a stone for. "He said because stones don't die". I was impressed by his ability to verbalize his fear but was not prepared for it. I had to fight back the tears and tell him that just because I was sick it did not mean that I was going to die. I was careful not to promise that I would not. That was incredibly hard......

This past Sat while taking Declan for a walk along the beachfront, I took a focal seizure in the right part of my face. It is now Monday and the feeling still has not returned to normal. I am about to go into the hospital for a series of tests to check for infection in the brain. I guess this is going to be an ongoing part of managing this disease. So much can go wrong even if you are doing all the right things. Still I will not let it bring me down.

My next MRI is booked for July 30th and I am due to go back into hospital on August 3rd. I have to say that I am in good spirits and it has to do with everyone's incredible support. Barry and I are completely overwhelmed by it all. There are complete strangers that I have never met who have so generously given money and beautiful words of encouragement. It certainly restores your faith in humanity...

Until next time, thank you for all your support and kindness it has made a big difference.

Still fighting....Love Audrey xox

 

Audrey’s Story
May 2009

My name is Audrey Rose Myrden born May 4, 1967 in Sydney, Nova Scotia Canada. I was the last of 9 children to Cornelius and Claire Quinlan. My Mother was of Scottish decent and my Father was Irish.  My Father was incredibly hard working and had a very strong sense of pride. My Mother was an amazing woman who was an incredible cook and baker.  A lot of people in my family say that I most resemble my Mother. (They obviously never tried my cooking) I think I definitely have traits of both parents.

When I was 15, my mother was diagnosed with lung cancer and died 1 year later at the age of 56. I was 16 years old and my world fell apart. It would only be 2 years later that my Father passed away. I am sure from a broken heart. I truly felt abandoned and orphaned.

At the age of 19 I moved to Calgary Canada where I met my husband Barry. It was love at first site for both of us.

I spent my early twenties modeling for different companies and finding my feet in the working world. I had a few opportunities to travel abroad but never took them. I was quite comfortable working in Canada. It seemed safe and secure.

Barry and I decided to break that pattern and travel after getting married. We had an opportunity to go to the Philippines where we spent approximately 6 months. It was a great experience and one that I would suggest everyone should experience.

After seeing many parts of this country, we decided to move on to Australia. I had always wanted to go there. The minute we landed we were in heaven. We instantly fell in love with Manly which is 12 km from the city centre of Sydney.  It took us a while to adjust to being back in Western Civilization with all its creature comforts.
We found the people incredibly friendly and helpful.  Barry quickly found a job and we settled into the quaint community beach suburb.
I felt truly at home for the first time in years.
I quickly scoped the scene for possible work and decided that I wanted to work at one of my favorite restaurants on the beach front called “the Barking Frog.” My interview with the owner, who was only 19 at the time, lasted 2½ hours. We both instantly had a connection, and I walked away feeling like I was on cloud nine. For a year we enjoyed working and holidaying in what we considered Paradise.  We were living the life most people only dream about.

One day I found a small lump in my breast and decided to get it looked at. My Doctor immediately referred me to the Breast Cancer clinic in Sydney. After several tests, mammograms and biopsies they suggested a mastectomy or lumpectomy at the very least. We were devastated. We immediately made plans to return to Canada. It took three months to get a result after returning to Canada. A lumpectomy followed and my Surgeon was happy that he got absolutely everything. Pathology came back inconclusive with abnormal cells but fortunately it was found at a very early stage.  I did all of this without my family knowing. Until I knew what I was dealing with I did not want to worry anyone. As it turned out I had to notify everyone as I now represented a new generation of breast cancer in my family.  I was so lucky….. I would have several tests every three months for years afterwards. I was told to try and get pregnant and breast feed the children and that would lower my chance s of it returning. It worked.

It took us almost two years to organize our lives to return to Manly, Australia. Barry was being sponsored by his old boss who gave me automatic working privileges. I returned to my old role at “the Frog” as Manager or “Head Chief” as the owner Elise McSweeny would call me. The McSweeny family would become our surrogate family away from home. Johnny, Elise’s Father, became a very inspirational father figure to me as well.

At age 34 I became pregnant with my first child Charlie. He was born on Dec 30th 2002. This was, quite honestly, the happiest day of my life. Motherhood was everything I dreamt about and more.

When Charlie was 8 months old I became pregnant with Jack. We were thrilled to say the least. Jack was born June 7, 2004. It was a normal delivery and admittedly much easier second time around. We experienced some major sleep deprivation during his early months. The challenges were tough at times. When Jack was 2 he contracted the “Tech” virus which was one of the scariest things that ever happened to our family. He was rushed to the Children’s Hospital to immediately undergo 2 blood transfusions. At the time the doctors were unsure of what caused his extremely low blood count and were discussing terms like Leukemia or bone cancer! Five days later we learned it was indeed a virus and he would recover completely. What a worry.

Later that year, my family in Canada contacted me with bad news.
My brother Kevin was electrocuted and was killed instantly. I went home to the funeral without the kids or Barry and felt absolutely numb. I only went for 6 days including travel time. I felt I barely had time to grieve. My heart went out to his wife Wanda and their 2 boys. My brother was a devoted father and selfless person who organized and ran the “Coats for Kids” charity in Eastern Canada. He left a beautiful legacy to his family. It certainly helped with the grieving process when I retuned to Australia.

My third son, beautiful Declan, came along Jan 26th 2007. I was so thrilled and felt so blessed at my beautiful family. Our family was complete. Barry’s Mother and father came to stay for three months and this was the first time we had family around during the birth of one of our children. What a difference it made.

We decided that a trip back to Canada was in order for Dec. 2008. My family had not even met our children. It was an exciting trip that saw us not only travel across the world but also from the West Coast to the East Coast of Canada. With three small boys under the age of 6, it had its challenging moments. The boys loved seeing their extended families and experiencing snow for the first time.

A week before we left on our trip I took my first fainting spell. Charlie found me on the floor alerted Barry thinking I was dead. What a fright he had. I went to the Doctor and had my blood tested and everything came back normal. My Doctor said that I had naturally low blood pressure and fainting could be a possible symptom.

During our trip in Newfoundland I fainted again. I just put it down to not enough sleep and my low blood pressure.

On our return trip home, I just could not seem to shake off a feeling of severe jetlag. This feeling would continue until my Diagnosis on March 16th 2009. A week before my diagnosis I was feeling really bad with pressure headaches behind my eyes. I went to my Doctor and she gave me antibiotics for an upper sinus infection. I had not had a cold in the past few months and I was eager to get some type of relief. After 4 days I returned to her and told her that the antibiotics were not working and I felt terrible. She said what I was describing could have been Viral Meningitis. I couldn’t believe it. I drove to the Manly Hospital and was admitted straight away for a series of test including a CT (Cat) Scan.

Before long, an emergency Doctor came in and informed me that I did not have meningitis. I was so relieved. When I looked at her again she had tears in her eyes and said, “I am sorry but you have a malignant brain tumor and it looks bad.” I was in shock….  She said they were all amazed that I was still alive that there was so much swelling that my brain was totally pushed to one side.

Barry arrived with the kids in time to see me off in the ambulance to the Royal North Shore Hospital. It all happened so fast. I would spend the next 12 hours in a series of tests, CT scans, MRI’s, X-rays, ultrasounds, blood tests, etc, etc. Brain surgery was booked for 4 days later. They had to wait for the swelling to subside to safely remove the tumor, which was located in the sub cortex lobe. They thought I had a GMB (Glioblastoma Multiforme) but would know more once they operated and got the pathology back. After brain surgery I would start aggressive treatment with both radiation and Chemotherapy. The next few days passed by very slowly. Everyone, including myself, was in a state of shock. I felt so bad for Barry and even worse for the kids.

Brain surgery was a 4 hour procedure and was deemed a success. I was awake and talking to God, 5 minutes after being out of anesthetic. I was very lucid and driving the nurse crazy with all my questions. I was so thrilled that I made it through the surgery with all my functions intact. I must have had Angels working overtime.

I made a random comment to my Surgeon, “So much for all my healthy living!” He said to me quite the opposite, “The only reason you are still here is because of your healthy living.” He was very impressed by my recovery and said that I had an added advantage of being fit and healthy.  The next 5 days awaiting pathology was pure living hell.

I was told the results of the pathology by one of the neuro registrars who did not follow protocol. “I have your pathology results (It was 7 am and I was alone.)” “It is a GMB Glioblastoma Multiforme with PNET features, Stage 4, considered terminal and very rare!” I was only one of 55 people in the world (first in Australia) with this type of tumor and there were no known survivors past 18 months. Thank God the nurse was there to sit with me. I was furious that he came to my room, dumped the results, and left all within three minutes. I truly believed that the pathology would come back negative or at least low grade and treatable. The nurse had to call Barry as I was too upset. When I thought of the boys without me, I felt sick. When Barry arrived I could not even look at him. All I could say was, “I am so sorry!” We just held each other and cried. I just wanted to go home and be with my children.

That evening I was allowed to go home. 5 days later, I took a reaction to the medication I was on and had a series of seizures. I was re-admitted back in the hospital for another week. The kids were highly affected during my stay in the hospital. It broke my heart to see them suffer as they could not fully understand what happened to Mummy. I was so happy when I finally came home and was able to start treatment as an outpatient. After two weeks of being home they settled down immensely.

In May 2009, I completed 6 weeks of radiation. I made it! I felt like celebrating. Radiation treatment is painless and quick; approximately a 15 minute treatment, 5 days a week. They told me they gave me the maximum dose of 6 Mega Volts (6 million volts.) This is all the brain can take.  18 Kilo Volts (18 thousand volts.) is equivalent of an X-ray for a broken arm.

Barry returned to work and I have had an amazing group of close friends that drove me to the Royal North Shore Hospital for my treatment. This was a Godsend as I was not permitted to drive.

I started with chemotherapy at the same time and took “Temodal” 7 days a week. This was administered orally. I also had Carbuplatin administered intravenously once a week, for three weeks. My blood Platelets level dropped too low and the Doctors had to stop my Chemotherapy as it was more important to get through the radiation sessions.

At the time of writing this, I have been given a few weeks reprieve from the Chemotherapy until my blood platelet levels improve. Although the radiation has stopped, I will continue to feel the accumulative effects for the next 4 weeks. I am sporting a nice bald patch, roughly half the size of my head. They tell me it will start to re-grow in 4 weeks. Just in time for the Chemotherapy to knock it all out again. Apparently, your hair grows back curly as the DNA is permanently bent. I have a follow up appointment with my Neurosurgeon, whom I have not seen since I was in the hospital.

One of the most difficult practical challenges I face with this disease is the instability of the financial future for my children if I do not survive. As a previous cancer survivor I am not eligible for life insurance, and I am unable to do any continuing work whilst being treated. I have had to deregister my organic cleaning business which I started 5 years ago and as a family we now function on a single salary with continuing medical expenses, and ongoing care.  I worry alot about how Barry would survive and look after the children as a single parent with one income and no immediate family in Australia.

Until my next update, we are remaining hopeful and positive and enjoying the time we have together.

I am doing all I can to fight this horrible disease.

Love
Audrey xx