Thursday, October 25, 2012


As a child my nickname was Bones, because I was so skinny it was painful for adults when I sat on their lap.

Yesterday my white cell count was 22. That's a freaking miracle - down from 124 last week. That's how crazy this drug is. It's working. I like that it has the word 'live' in its name. I like that I now have my own script and am developing a relationship with a local pharmacist who will order it in each time I need a new bottle. These drugs aren't stored at the pharmacy. They cost $5000 a bottle. (That's not what I pay.) Here's the downside. The drugs make my bones hurt. Now, I have bones in every part of my body, so that's a lot of hurting. It may not all hurt at once, but every part is taking turns. My hands hurt. My back. My hips. My jaw. My feet. This isn't the time to start trying to wear ballet flats.

I'll be seeing my doctor twice next week, down from every second day. I no longer need to pack a hospital bag every time I get my blood checked. I've asked people to take me to my appointments, because I've been too tired to be able to drive home, but I'm finding that it's lovely to spend that time with people. I've been a little less tired, and my head has cleared a little, but I might keep asking people to come with me to my appointments because it's nice to have the company. Next week I'll ask about pain relief. I couldn't take certain ones with the chemo drugs, and I can't take certain others with the Leukaemia drugs, so I'll just wait it out, now I've switched drugs, and be Bones again for a while.  

Today wasn't a day I saw my doctor. I thought I might try going to yoga to stretch myself, figuring if I need to lie down during it, no-one would mind. But no. My two older girls are on school camp. Because we had no driving around to do in the afternoon I suggested Banjo play on the playground equipment. She fell out of a tree and hurt her wrist. I had walked to school (which hurt, but I have to keep moving) so another mum got her car and gave us a lift home. Last night I received a call from a teacher at camp. Matilda had something stuck in her eye and it wasn't coming out. She was uncomfortable. If it wasn't better in the morning they would take her to a doctor. I suggested that a GP wouldn't do anything except send them to a specialist. It happened before when Matilda was a preschooler. A piece of bark had stuck under her eyelid and I took her to the eye hospital. I have a rule now - if something is stuck in an eye longer than an hour I drive to the eye hospital. I'm not messing around with anyone's sight. And normally when a child falls and has an injury I drive to the hospital. This after learning the hard way. Anyway, I wanted to start a new relationship with a doctor who had been recommended (for me, someone more personal and private - the bulk billers were impersonal, the pay up fronts were - well, too expensive and hard to get an appointment). I needed to start again on investigating Banjo's tummy pains. So, we went to the doctor's, then to book the x ray and ultrasound, then home to hear a phone message that the School Principal had taken Matilda to a local optometrist who had removed some stuff from under her eyelid and she was now fine. Then back for the x-ray and wait an hour for the results. I told Banjo that if we had to go to hospital, I would need to come home for a nap first. She looked appalled. O happy day, no fracture, and home for a rest. So the day ended much better than it could have. It's been one of the few days in which I've thought a mobile phone would be handy.

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