Latest Update from Audrey - July - Nov 2010

July 2010

Living more, planning less…

It has been a couple of wet and cool months but I can feel summer around the corner. I look forward to not having to wear 4-5 layers of clothes in order to keep warm.

The boys are enjoying school holidays and they are always busy with fun activities. A break of routine is always good fun. We have started dancing to Michael Jackson cranked in the living room. What fun. Charlie now asks for it every night. A good way to let our hair down and have some laughs. This music brings back lots of great memories for me. They are just finding out about him. O.k. I’m starting to feel really old now.

Barry and I have started Bush hiking together. Because of my lack of balance he has bought me a walking stick (proper hiking one). I did not like it at first but it was soon obvious that I needed it. Both Barry and I love these hikes. I am surprised that my fitness is good enough for these 3 hour hikes.  The scenery is so stunning and you really feel alive and in the present.  There are absolutely no distractions except Mother Nature in all her glory and Barry telling me to speed up! It has proven to be one of the best things we have done in a long time. Why didn’t we do this years ago??? Too busy to stop and smell the roses or in this case the Frangipani’s I guess.

Thalidomide:

A drug used in the 60’s to help Pregnant Mother’s with severe morning sickness. This proved to be a very bad idea. Turns out although helping with severe morning sickness it cuts off blood supply to new growth. Thus the Thalidomide babies were born without limbs. It is a banned drug in Australia and most parts of the world.
It has recently been used for Brain tumors to help stop blood flow to any new tumour  regrowth  with promising results. It also is used for stimulating bone marrow. As mine has been wiped out, they are hoping it will bring my blood levels up. Leukemia is a real threat if they continue me on Chemotherapy. I will let you know if it works. Fingers crossed. There are many side effects and some potentially fatal ones. It is worth the risk I think considering the alternatives.

Rollercoaster

July has been a challenging month. My dear friend, Annie’s Dad passed away and that was very sad. However, he left a beautiful legacy and a lifetime of loving memories. The funeral was confronting for me but it was important that I go and show my support. I am glad I did. I learned much about her beautiful family and her Dad left a lasting legacy.

I had a few health challenges these past months. A contracted a virus that triggered ” Periocarditis” (Inflammation of the heart muscle) It honestly felt like I was having a heart attack. (Stabbing pain in my chest around my heart muscle.) Apparently, Neurofen and bed rest was the remedy  for this.It took about a week for it to resolve. Hopefully, there is no permanent damage. I was starting to think it was the thalidomide that caused this upheaval.  I have never experienced anything like it before. My Oncologist assures me it was caused by a nasty virus.

August 2010

Family and Friends

My sister Elaine came to visit for 6 days. Although short and sweet it was really nice to see her. The kids especially had a great time. I do feel bad for them sometimes as they miss out on extended family being so far away.

What a crazy fantastic month!!!  Annie and Vicky and their students from ICMS once again had a spectacular fundraising dinner for us. It was held at Manly Golf Club. There were so many highlights. Where do I begin?? Annie and Vicky arranged for me to meet with another GBM Pnet survivor from Canberra,” Sarah Mamali”. We got to meet and had much in common. We shared a similar treatment protocol and she has 2 young boys also. Not surprising we had an instant connection. When I read her blog and read that she hiked the Kakoda Trail after being diagnosed, I said to Barry, “Right more living less planning”. That was when the penny dropped and I realized that I had done enough planning and it was time to do more living. That is easier said than done. I can honestly say that I feel that I have addressed all the important things that needed doing.I felt it was the responsible thing to do when you have such a young family.

It was an elegant evening from the beginning to end. There was a beautiful young Norwegian student named, “Silje” who after meeting me at the College went up to her room and wrote a song called, “Audrey’s song.” She played acoustic and sang this absolutely beautiful song. There was not a dry eye in the room. The lyrics are so powerful. She has an exceptional voice. A very moving performance.

Helen Wheeler, my Oncologist, also came and spoke at the dinner. I was really touched as I know how busy her schedule is. Having her refer to me as a long term survivor, at 18 months was pretty confronting for a lot of people there. Everywhere I looked there were people very near and dear to me. I felt very supported, loved and grateful for all my blessings. It was also nice that my sister Elaine was there also to witness what an amazing support group of friends we have around us.  She got to meet a lot of the very special people in our lives.

Vicky organized a tub of gifts for the boys. They were thrilled needless to say. We kept some and gave some to the Far West Children’s hospital. The boys love giving back to needy children every year.

I did not want the evening to end. As always it feels like you hardly get a chance to speak to everyone.

Sept 2010

Medical Update

I am now on a double dose of Thalidomide as well as Oral Chemo. I am not liking the Thalidomide and my body is taking a while adjusting to the many side effects. But if it works I will gladly  put up with it. It seems to be keeping my blood levels from dropping too low. This will enable them to keep giving me more chemo and not contracting Leukemia and hopefully, keeping the Cancer dormant. It is a fine balance. I am doing everything in my power to combat all the damage these drugs are doing to my once healthy organs. See future blogs for, “Things that I have learned”.

Boys School

Charlie celebrated his confirmation this month. His Saint name was Luke. I was thinking, “Great he chose that name because of Luke Skywalker from Star Wars.” Was I ever wrong?? I felt bad when he said, “I chose Luke because he helps sick people” Seven years old and so sweet.

Audrey’s Song

Silje recorded, “Audrey’s Song.” in the studio and it sounds fantastic. Annie dropped off a copy of it and it is stunning. I stayed up till 2 am playing it over and over writing out the lyrics. It is very powerful and moving. I cried a river of tears but it felt good for my soul.

Johnny’s 80th

It was so nice to celebrate the birthday of a dear friend of mine Johnny who has been like a surrogate Father to Barry and I. I laugh when I think back to when he came to visit us in Calgary, Canada. The day he arrived it started to snow and it did not stop for two days. It broke a record for the most snowfall in 113 years! We dressed Johnny in Oven Mitts to go for a walk. Those were great memories. He is a very special caring man.

Real Estate Challenge

We were not having any luck finding a house in our price bracket so it was suggested to me that we do, “a real estate challenge” with the media. After much thought and careful consideration I agreed. The filming was over a period of several days. The Channel Nine crew was exceptionally friendly and professional. The segment aired on August 16th and we received an overwhelming response of offers to help. “A Current Affair” said that once we bought a house they would help fix it up and make it over. WOW!! The search is on.

October, 2010

Sold

After much searching and several failed attempts. We finally found a suitable house. Yay! We put an offer in to the vendor earlier in the week pre auction and they rejected it. With our limited budget, (We managed to hang on to a small down payment and we were preapproved for a modest mortgage) I was not holding out any hope for a successful auction bid. Barry took the kids to a concert at the Entertainment Centre while I went to the Auction. A good friend and realtor, Leoni Klaric went with me to bid on my behalf. She said to me 2 minutes prior to the auction that if she bid over our budget, not to panic???   She and her husband Rob plus Grant Williams (Channel Nine) had discussed it and offered to kick in a little extra to secure the home. They were going to gift us the difference. I was in shock!!! I was so overwhelmed by their generosity. We won the auction! Although the house needs a lot of work and now having to manage a huge mortgage, we still are quite happy to have a place to call our own.

A big case of the worst house on the best street for sure. There is talk now of a huge home renovation makeover. We are speechless. The amount and level of generosity offered to us is truly overwhelming! We are extremely grateful to all of you both here and abroad for all the love and support you have shown us!

November 2010

Latest and greatest.

After a few stressful weeks of anxiously waiting we settled and moved into our newly renovated home. It was a monumental effort by Sarah, Stef, Brad, Geoff, Lisa, Rob, Leonie, Cathy… and the entire team but they managed to pull it off. We settled on the last day of renos and the house was revealed to us 2 hours later. We are utterly speechless. Everything was done! Everything to such a high standard!! I know I said it before but we are incredibly overwhelmed!! I will update further with all the details of the new place next week when we sort out the new internet access.

Thanks again everyone!

Audrey, Barry and the boys.