Thursday, November 27, 2008

Guest Blogger -Baldylocks

Today I thought I would add a post from a guest blogger. She was diagnosed with Leukemia at 33 in the last two weeks of her university degree. After several rounds of chemotherapy and a bone marrow transplant from her brother, she is now trying to get back to a new normal. You can visit her blog at

Da Funk
I've been floundering recently. Almost three years of being ill in bed has taken a huge toll on my body and my psyche. I've gone through a long cycle of fear, anger, hope, and an endless waiting for things to get better. I started out with a very solid belief that I would be fine. But after 3 years in my bed and struggling to get through every day I eventually wondered, will I get better? No doctor would say.

The prednisone and all my other drugs have made me so ill. My strong band of hope that I would see the end of this has grown thinner and thinner until it was only a battered thread.

This whole cancer dealy was only supposed to be a bump in the road of my life. One day I would wistfully look back at it, throw my head back and laugh in a conquering sort of tone. Now I know I will never be the same. I realize it's been said a hundred times over by a hundred different people in a hundred different contexts, but it's new to me. I will never be the same.

Sadness has crept in. Frustration has seeped into every inner corner of my being. With it came listlessness and apathy. Pain, medication, severe sleep and fatigue issues have clouded my brain making it feel like it's stuffed with cotton.

I feel like all the control I've had over my life has been taken away from me. My body has become my betrayer.

I felt a little like putting my head in the oven.

Perfect :) I find being severely at the bottom a real catalyst for change. There is no place to go but up. I've decided to kick this suck hole despondency.

I made a plan. Despite all the things I struggle to get done every day, I am going to come first. I took myself straight to the doctor and to a Cancer Agency counsellor as well as a massage therapist. The doctor made a priority of sorting out my lack of sleep. The Amtitriptoline made me so much worse. I tried it for about 5 days but after a midnight online shopping spree I had no recollection of, I went back to the Dr and stopped taking it. The upside of that is I have been receiving nice little "presents" in the mail for the last two weeks. My GP upped my current sleeping meds which don't give me any trouble. I've also been off my main tormentor (prednisone) for 4 months.

Getting a better sleep has made me feel a bit better which in turn has enabled me to do a little more. I been forcing myself to go twice a week to my arthritic waterfit class. No matter how suckathetic I feel, I go. When a friend asks me to go for a walk on the beach at an unGodly hour, I say, Yes. I was asked to go to a salsa dancing class. I said, Yes, and went but was only able to sit and watch. At least I walked up the stairs. In short I am stretching my boundaries and if I suffer after, at least I know I tried.

I hurt, I feel awful, my body is protesting but I feel hopeful again. I have goals again. I feel like I have some control in my life again. My body is my goal. It's not my betrayer, it is a part of me that has had a hard time and deserves a little compassion.

If I'm not going to save me, who will?

Thursday, November 20, 2008

Light The Night Walk for Leukemia

Hello! We walked for little Jobe - and my beautiful friend Rosanne too who was with us - this year and last year. She's a survivor (we're searching high and low for a new term instead of that one? If you have any ideas, we would love to hear them...) Survivors caried white balloons. We had red ones and there were gold balloons to commemorate those who are no longer with us. Events like this really help - not only in the money they raise but just because 'they're there'... I chatted with a father who was there with his wife and 2 other kids while their young daughter was in hospital undergoing her second round of chemotherapy. They were so glad to have somewhere to go where they felt they could go... They just felt too 'shell shocked' to be anywhere else... I was very happy to be there. After the walk - and 5km is a long way when you're still recovering - we partied with a firedancer (above) and music and snacks... Thank you very much to all the generous folks who sponsored us - we really appreciated it. Here are some photos: