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.
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.
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.
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.
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.
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
If only we had such equity in the education system. Hmm.