Barry Myrden
x o
Barry Myrden
x o
Audrey's husband Barry shares that Audrey is gravely unwell. She is not very good and wasn't expected to last this past weekend. It could be a matter of days even hours. It is clear that the tumour has come back and they have exhausted all treatment options.
Now it is just a case of keeping her comfortable. She is not in any pain and is heavily medicated. She has not eaten in 2 weeks and has not drank in 3 or 4 days. Her sister Corrine is here with her from Canada which is a relief.
She has many visitors each day but she has fewer and fewer waking moments. I'd like to think that she knows who is with her each day.
Thanks so much for all your thoughts and prayers.
Barry Myrden
Below is the latest update from Barry Myrden, Audrey's husband. Barry, Audrey and their family are facing some big challenges in the coming weeks. Thanks to all for your support so far, any further support is greatly appreciated.
Audrey is not doing so great. She is still in palliative care hospital at Greenwich and will be for some time.
I don't believe she will ever be able to come home.
She is allowed out on day trips but she is on strong pain medication for headaches and is easily confused.
I spoke with her doctors last week and they said they had exhausted all options with her treatment. They can kill her with Chemo as easily as the tumour can kill her. No more surgery,Avastin, Chemo, MRI's... When the tumour comes back (if it hasn't already) then we are just to make her comfortable as possible.
She is still relatively mobile and can feed herself but has hard time telling what day it is.
Thank you for all your support so far.
Barry Myrden
Although she can not work or drive and must sleep for a few hours during
the day, she was able to spend quality time with her boys.
She started a new drug from the USA called Avastin which is very expensive
and not presently on the PBS list so not covered by the government.
She was on a low dose and had an infusion every 3 weeks plus anti seizure
medication and steroids and chemo. The low dose of Avastin did not
seem to be that effective as her latest MRI showed another mass on the
right side of her frontal lobe. She went into surgery on Thursday
08/09/2011.
Audrey had a successful surgery but has been highly affected with short
term memory loss and confusion plus a lot of facial swelling.
Audrey's surgeon was happy with results but did have to go into both sides of the
brain. He removed a mass in the spot where the MRI indicated and a smaller mass in the
area he last operated on.
As of now Audrey is tumour free.
Following the surgery Audrey spent a night in ICU and most of the next day. Nurses moved her to the neuro ward the next day.
I saw her in the afternoon and she was barely awake but seemed to be fine
with no noticeable functionality deficit.
She was very weak and tired as she had very little sleep and had not eaten
in two days. She also had nausea and vomited out what little she had in
her.
Doctors and nurses are happy with her progress thus far but say it will be
a long recovery and time is not what Audrey has in abundance.
I spoke with Audrey's Oncologist and she is not overly impressed with
Audrey progress. The pathology came back and the tumour is similar to
the previous one removed, GBM Grade 4 malignant and aggressive. She also is
not optimistic that she will fully recover from her present state.
We were discussing the possibility of palliative care next week as she
needs more attention than she can get at home or at the hospital. Audrey
is looking at it as a respite to gain her energy and catch up on sleep. No
decisions will be made about care or next course of treatment until next
week.
It seems Audrey gains a little each day and is totally coherent but still
is confused and disoriented.
Thank you all for all your thoughts and prayers.
Best Regards Barry, Charlie, Jack, Declan and Audrey xx
Nov/Dec 2010
It has been a crazy few months to say the least. With buying the house, filming with ACA , moving in, then more surgery. All of us have been under a lot of pressure. However, I feel over the moon to have this all behind us and living in a new home. The house is simply amazing and the experience was one of those once in a lifetime things that rarely ever happen but did!! It was a fantastic experience and really left me feeling so blessed and very loved and supported by a huge network of people. The demolition of the house was amazing to watch and the boys really enjoyed getting involved also. I am glad we got to be on site and meet many of the workers. We got to see the house stripped bare and then were told to leave the site and await their phone call. We got to meet everyone who kindly offered their services and came back day after day for two weeks. Unbelievable!!
We settled on Oct 29th and that evening, they did a house reveal and blindfolded us and walked us to the house. I have to say I was stunned and very thrilled with the outcome. Sarah asked me what was my favourite part of the house and I said the yard and the deck and my bedroom but really everything was my favourite. The house has such an amazing energy. Everything is brand new and the house is so light and inviting. The yard is huge and the kids are overjoyed. We decided to stay the night. It felt like staying at a holiday home. It is now mid Dec and I have to say it is only now starting to feel like home. It all happened so fast. I am blissfully happy. The boys love the house and Barry has a permanent grin on his face.
The live house reveal was on the 8th of Nov which was a Monday. As luck would have it, my oncologist admitted me to the hospital that morning. I had a virus and my bloods have crashed big time. I think it was because of one of the seizure meds that they added to my cocktail of drugs. Thank goodness my dear friend Leoni stayed by my side the entire day. I had to spend the day in Emergency in order to get admitted to the Neuro ward?? Needless to say I had to watch the live house reveal from the Hospital lounge. It was all I could do not to run out of there to be with Bear and the kids. I felt so sorry for Barry. He had the massive task of getting me to the hospital, getting the boys to and from school, packing up our old place and moving and unpacking into our new place all with 200 people on our front lawn! I was the one who started all this and could not even be there for the reveal. It was heartbreaking. Needless to say I did not sleep a wink that night.
My surgery did not take place until the 15th. I contracted a bad virus and I had to be transfused as my bloods did not recover in time for the surgery. Second time around it was a much different experience. I was much calmer and there was hardly any fear, unlike my first operation. The operation was deemed a success and although I have a huge scar from one ear to the other, 4 days later I was allowed to go home. Feeling a bit sore but thrilled to be home with all my boys in my new house. My treatment started 2 weeks later. Radiation 5 days a week for two weeks. The histology came back as a high grade GBM so Dr Back felt that despite giving me a lifetimes dose of radiation the first time around, more was needed. This increases my chance of seizures and stoke significantly. The location of the reoccurrence was on the frontal lobe this time on the opposite side and we got it relatively early so Dr Back said he could safely target it with a dose of radiation. With that, the other part of my dream team, Dr Helen Wheeler, suggested that I do 2 weeks of a very low dose of chemo. It works in conjunction with the radiation.
Dec 20th
It is only 5 days till Xmas and I have hardly done any shopping. Yikes!! Feeling overwhelmed is an understatement. I am feeling really tired and trying very hard to overcompensate with the boys but it is leaving me feeling exhausted. After speaking to a friend she suggested that I keep it simple… Thanks, I have taken that on board. I see my surgeon for the first time since my surgery today and am anxious to hear what he has to say. I am determined to have a great Christmas . I am off the steroids so that is a good start. We simply love the house. Rudy the Swiss builder, was back today fixing up a few things. He is such a beautiful man. Tues ACA is going to do an update. Looking forward to seeing everyone again. They are so amazing all of them. I have kind of missed them. Strange but I feel so close to them as they all had a big part to play in helping us get our home.
Merry Christmas Everyone, Thank you to everyone for their kindness, dinners, cards, warm wishes. I feel very loved and supported. Will keep you updated after Tues. Please have a healthy and happy New Year. I look forward to having a relaxing, fun filled Xmas with the family.
Best Wishes
Audrey and family
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