T-7: "Nobody is allowed to leave this room. Nobody"!

Today has been a hard day. But it could have been worse. Having said this, the chemo is still running so we’re not out of the woods yet, but I gather that the first hour or so is the worst bit. We were taken up to the High Care unit around 10.30 this morning but it was not until after lunch that things started moving. The doctors checked Kay out and pronounced that the chemo could be started but it wasn’t until about 2.30 that it did start.

For the first hour or so nothing much happened. Kay was tired and wanted to sleep, Marion & I were sitting on the edges of our seats, watching the monitors like hawks. Into the second hour Kay started to complain of ‘flu like symptoms, firstly the cold shivers, then a headache. Then she was very sick. The chemo was stopped to give her a rest, and the doctor prescribed paracetamol for her headache. Fortunately she had not (and did not) develop an allergic reaction, which was our biggest worry.

However she was scared stiff by how sick she felt and demanded that the doctor and attending nurse stay in the room with her: “Nobody is allowed to leave this room, Nobody!” she yelled at the doctor. The doctor duly obeyed instructions and hung around until Kay dozed off.

Kay is still frightened by the epileptic attacks that she had last year and as soon as she started to feel the effects of the chemo she became very frightened. Marion & I had a hard job to try and calm her down. Eventually the paracetamol started working and Kay fell into a light sleep. The chemo was restarted and so far has run without further incident. Kay slept for an hour or two and woke up a little while ago feeling much better, headache gone. I have taken a break to sit on a more comfortable chair in a room with windows for a while, but when I left she was watching TV and slowly perking up. I’ll head back as soon as I’ve finished writing this blog.

In total she will have five courses of ATG. The first is supposed to be the most difficult and together with the second is performed in the High Care unit. So Kay will stay in High Care overnight and we will repeat the treatment again tomorrow. If all goes well she will be moved back to the ward for the remaining courses. I suppose that there’s an exponential decay thing going on here, the first course killing 80% of her t-cells, the second 80% of the remainder, etc, etc. This would explain why the first course causes the most problems: the reaction is the body’s response to the death of all those t-cells.

So, we have crossed the point-of-no-return, if there ever was such a thing in this story. Kay’s immune system is now on a steep descent into oblivion. Only the transplant will enable it to recover. A sobering thought. And then there’s the spectre of Total Body Radiation coming up. That’s the one that really scares me.

Still, I said to Marion earlier that we have had more difficult days than today and she agreed. Kay ‘only’ suffered the typical effects of extreme chemotherapy. I guess that ATG has broken down our normal perspective along with Kay’s immune system.