Adventures in CML

I spoke too soon about not needing to pack a hospital bag. I’d better post an update before anything else happens.

I've spent two nights in hospital. My wcc was 2.6 and my haemoglobin too low at 73 (normal range for women is 120 -160; that explains why I was puffing as I was walking around on the weekend), so they gave me a transfusion - two units. During the second unit my blood pressure was going down and my temperature going up, so I was admitted. A few bags of IV antibiotics later, here I am. I took a break from the Leukaemia meds, but have started back on a lower dose, and taking antibiotics. On leaving hospital my HB was 92 and my wcc was 2.2, which is kind of good, because if it immediately galloped back up, that would mean the cancer is very aggressive. But it means I have nothing with which to fight infection.

When I went off to the appointment I left my 8 y o with our neighbour, saying I'd be two hours tops. I didn’t pack a hospital bag. When I had to stay I realised I didn't have his phone number, nor could I remember his surname. I rang my friend asking her to walk to my neighbour's house to collect my child. I had to cancel the orthodontist appointment I'd waited six weeks for, and called the school to ask them to send my other kids home with another family, even though I couldn't contact the parents of that other family. My friend who had driven me to my appointment was excellent company and stayed with me for ten hours. She arranged other people to take her kids. Lots of people called me at hospital, and a friend drove me home.  It really takes a village.

In the Haematology Ward I meet other patients. They are at all stages of the Haematological diseases and most seem to have spent long periods in hospital.

When I came out of hospital it was Halloween. My 8 y o wanted to go Trick or Treating. I wasn’t up to it, so asked my other neighbour if my daughter could knock on their door after dinner. She agreed, and then took my daughter to other houses in the street. The village.

The morning after I came out of hospital I had another appointment. Another friend took me, and I packed a hospital bag, just in case. My wcc was 2.0, but my HB was 98. My platelets had risen to 101, which was good. Because my Neutrophils were still too low at 0.3 (normal is 2), I’m now taking injections of  GCSF (granulocyte-colony stimulating factor)  to stimulate my bone marrow. The nurse gave me my first one, but I’m doing the next one at home. I told her I used to give my cat insulin injections. She said I’d be fine. I’m still on the Leukaemia drug (Glivec, if you’re interested), but a  smaller dose. Side-effects? The skin on my face is rough and sore. I have pain in my bones (I can take panadol) and, as before, I’m expecting facial swelling (just pretend I’ve had botox) and swollen eyes (I’ll be wearing my sunglasses more often than usual).

I need to not get an infection. If I get a temperature of 38 I need to go straight to hospital. I’m rallying the family members to put their dirty tissues in the bin and flush the toilet themselves. Two children have coughs. I’m carrying around hand sanitizer. A patient I met who had an fection had been in hospital for a month. It is all becoming rather serious.

So, now I’m on uppers and downers for my wcc to try to settle in the normal range. I’m the Elvis of blood.