I’ve had good news this week. I got the results of my bone marrow biopsy and it shows the cells are no longer in blast crisis and there is no sign of malignancy. That’s amazing. The medication is working to repress the leukaemia. The stupid bone pain hasn’t been so stupid after all.
My bloods are stable, although still low, but not dangerously low. I‘m graduating to have a blood test only once a week. It makes such a difference. I feel better too. My concern this week has been in managing the bone pain (hot wheat packs, panadeine). I can see that it is possible to live with this disease; to take the medication everyday and live a normal life, having a blood test every three months just to check that everything is OK. It’s possible. It is also possible that the worst of it is behind me. As cancers go, CML isn’t too bad.
I saw my dentist this week, who said that my teeth are healthy, and thank heavens I’d been getting a check up every six months, and had major work done in recent years rather than having to need major work after my diagnosis. Good job. You never know what’s going to happen.
I was so happy with my biopsy result I made an announcement on Facebook. I hadn’t told everybody yet that I have Leukaemia, so for some of my friends I don’t see so regularly it was a bit of a shock. I thought it would have been a bit naff to announce such seriously bad news when I was first diagnosed. What’s the etiquette for such things? But now that I’ve turned a corner, it’s OK.
People have been commenting that I’m brave, or it must be a nightmare, but I don’t see it like that. I reckon that sickness is just a part of life. We live with uncertainty all the time (and kid ourselves that we don’t). We all have to die of something (I figured I would die from skin cancer, or in a car accident). We’re all going to die sometime. You really do just have to keep calm and carry on. I truly don’t know what else to do. You can’t just collapse, crying into your pillow all day. Especially with children. They still need to have their needs met. It isn’t a nightmare. Living in the DRC would be a nightmare. Having your children shot at on the way to school would be a nightmare. There’s no point in having a ‘why me’ attitude. Why not me? Why shouldn’t it be me who has cancer? I’ve been spending a lot of time in the Haematology waiting room with cancer patients. Everyone is there. All ages and nationalities. Cancer shows no discrimination. But here’s the thing that is brilliant. In our hospital system everyone is treated equally. The medical system in Australia will keep anyone alive, no matter who you are. It doesn’t matter if you are a teacher or mother or a car park attendant or a cleaner. It doesn't matter if you are mean or kind. The doctors will try to keep you alive. Taxpayers' money is invested in everyone who needs medical assistance, regardless of who you are.
Today I submitted my prescription for my medication. It has to be ordered by the pharmacy and the pharmacist commented that it was an expensive drug. The cost of my medication, taking 400mg a day for a month (and many patients, including me, take 500 or 600 mg) is $3789. I pay about $35. If I lived in the USA I would pay close to $5000, and that’s just for the medication for one month on the lower dose. Patients in the USA would also have to pay to see the specialists (I’ve been seeing them three, then two times a week.), transfusions, injections, x-rays, ultrasounds, biopsies, pathologists (I’ve had dozens of blood tests - perhaps a hundred - seven vials at a time isn't unusual) and hospital stays. It is all very manageable here. I have a lot of people to help me, and I’m aware that if I didn’t have children I certainly wouldn’t have the kind of support network that I have (sure I’d have another kind, but it would be different), and I’m grateful.
If only we had such equity in the education system. Hmm.
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My bloods are stable, although still low, but not dangerously low. I‘m graduating to have a blood test only once a week. It makes such a difference. I feel better too. My concern this week has been in managing the bone pain (hot wheat packs, panadeine). I can see that it is possible to live with this disease; to take the medication everyday and live a normal life, having a blood test every three months just to check that everything is OK. It’s possible. It is also possible that the worst of it is behind me. As cancers go, CML isn’t too bad.
I saw my dentist this week, who said that my teeth are healthy, and thank heavens I’d been getting a check up every six months, and had major work done in recent years rather than having to need major work after my diagnosis. Good job. You never know what’s going to happen.
I was so happy with my biopsy result I made an announcement on Facebook. I hadn’t told everybody yet that I have Leukaemia, so for some of my friends I don’t see so regularly it was a bit of a shock. I thought it would have been a bit naff to announce such seriously bad news when I was first diagnosed. What’s the etiquette for such things? But now that I’ve turned a corner, it’s OK.
People have been commenting that I’m brave, or it must be a nightmare, but I don’t see it like that. I reckon that sickness is just a part of life. We live with uncertainty all the time (and kid ourselves that we don’t). We all have to die of something (I figured I would die from skin cancer, or in a car accident). We’re all going to die sometime. You really do just have to keep calm and carry on. I truly don’t know what else to do. You can’t just collapse, crying into your pillow all day. Especially with children. They still need to have their needs met. It isn’t a nightmare. Living in the DRC would be a nightmare. Having your children shot at on the way to school would be a nightmare. There’s no point in having a ‘why me’ attitude. Why not me? Why shouldn’t it be me who has cancer? I’ve been spending a lot of time in the Haematology waiting room with cancer patients. Everyone is there. All ages and nationalities. Cancer shows no discrimination. But here’s the thing that is brilliant. In our hospital system everyone is treated equally. The medical system in Australia will keep anyone alive, no matter who you are. It doesn’t matter if you are a teacher or mother or a car park attendant or a cleaner. It doesn't matter if you are mean or kind. The doctors will try to keep you alive. Taxpayers' money is invested in everyone who needs medical assistance, regardless of who you are.
Today I submitted my prescription for my medication. It has to be ordered by the pharmacy and the pharmacist commented that it was an expensive drug. The cost of my medication, taking 400mg a day for a month (and many patients, including me, take 500 or 600 mg) is $3789. I pay about $35. If I lived in the USA I would pay close to $5000, and that’s just for the medication for one month on the lower dose. Patients in the USA would also have to pay to see the specialists (I’ve been seeing them three, then two times a week.), transfusions, injections, x-rays, ultrasounds, biopsies, pathologists (I’ve had dozens of blood tests - perhaps a hundred - seven vials at a time isn't unusual) and hospital stays. It is all very manageable here. I have a lot of people to help me, and I’m aware that if I didn’t have children I certainly wouldn’t have the kind of support network that I have (sure I’d have another kind, but it would be different), and I’m grateful.
If only we had such equity in the education system. Hmm.
