My blog posts are as rare as our hospital stays nowadays. Indeed we have not been inpatient at Kings since the beginning of January, and I have even lost the feeling of sitting on a time bomb and taken to the relaxed frame of mind of “whatever happens, happens”. Vega has started the third Maintenance cycle in the end of March, she had her 12 weekly lumbar puncture last week and we are looking forward to another week of steroids come Monday. By now we are so used to it all, and with the lack of any hospital stays, I dare say this is as close to normal as we could get. Normal for us, including a pretty straight forward day at nursery, school runs, park visits, but also whipping out the rubber gloves every evening and drawing up a few mls of poison, lovingly named ‘fruity meds’ by Vega.
Ray and I have just discovered that we seemed to have lost all our photos taken since January. We take a lot of photos, and with both Lyra’s and Alys’ birthdays in March, this is quite a tragedy. But in a strange way this loss is reflective of my state of mind these last few months. I seem to live in a daze, each day blending into the next, made up of blood results and smelly nappies. My days have been as lost as my photographs. Vega’s treatment now has catapulted me into a kind of no-mans-land. We have passed the acute stage, the drama, and have entered a boring, tiring sort of stage. Vega is looking considerably better, as you can see from the photo above, taken today.
When people think of children with cancer, Facebook images of ill, pale, skinny looking children come to mind. Bald, often with a feeding tube and holding up a sign saying “I have cancer and I can still smile” or such things. No one thinks of chubby, rosy cheeked little girls with cool pixie cuts. And yet, this too is a child with cancer, still neutropenic most of the time, on a wide range of medication and with many other minor issues yet no less major for this child. People look at us often, in the past they would see me with three children, all girls and smile or make a comment about me having my hands full or such. Then Vega did look ill for a while and you could see that people were trying to figure out what might be going on. Why is the child bald? She must have cancer. Now as time passes and the hair is coming back, people are still looking and still try to figure things out. Why has the one child out of the three short hair? Why is she walking funny? Maybe even why is she so chubby? I think it won’t be long before no one would ever notice anything odd or different about Vega.
Childhood cancer has many faces. Sometimes what you see on the outside is not the best representation of what is going on on the inside. Some days are real good and some not so good. Some days are quite a daze and some stick in your mind, whether you have photographs to remind you of them or not.