Up and Down

“Up” Day

Thank you for all your replies to my last blog post. I had more than I ever had, off and online. I have said to a few of you that I usually blog on days when I am particularly down, or even up. I condense everything down to that one blog post, distill my general mood and so you get the essence.

Some of you know that I once was well on the way to become a therapist myself. The blog has become an important therapeutic tool to me, you my readers have become my witnesses. I have said before that I rarely reply to comments, but I do read, appreciate and take them in. Even if I moan or question, I do not always look for empathy or answers. I am merely emptying myself of the concern and seeing something in black and white can change a perspective quite significantly.

Vega is getting on with Maintenance. I am not feeling comfortable with it yet, but I can see that I might in the future. It has only been three weeks after all. Last weeks bloods had me in a spin because they were so high (I am talking neutrophils here, 6.91) and today’s bloods were really low (0.44). Neutropenia again and I will have to think about sending her to nursery tomorrow. This is the reason of my dis-comfort, I am not sure what we are at. When I spoke to our onco nurse last week she said that doses would not be adjusted too much this cycle because they needed to see first how this level of chemo is affecting her counts. But the dose should be reduced if counts fall below 0.5. I will probably get a call tomorrow and find out what is going to happen. Vega is also due her intrathecal chemotherapy on Wednesday and that is always hard on the system so counts would be expected to drop even more.

Anyway, Vega is feeling really good. Her hair is coming back big time and she now looks like a little fuzzy Kiwi with super douper eyebrows. She is running (kind of, with a little limp) and is enjoying nursery- she managed to go every day last week.

Because Vega is immuno compromised, we all had to get the flu jab this year. Lyra cried for the entire way to the doctors and for nearly 30min after, Alys didn’t seem to have even noticed and Vega was probably the calmest, most cooperative three year old they have ever seen. She is so cool with all of this, her sense of the necessity of all of this admirable.
During these last few weeks she has spoken more about the events of the last few months. I don’t know if it is because she is getting older, or she is feeling better and this relief allows her to process some of the trauma. She randomly started talking about our transfer from Kings to the Marsden the day after she was diagnosed a few weeks ago. The transfer was in an ambulance, with blue lights and siren, Vega on the stretcher, IV fluids and all. I was sitting opposite her, together with our oncology nurse Kat, and one of the paramedics was sitting next to Vega. I cried for nearly the whole hour that it took, the shock still so new and the situation seemed so acute, being transferred with blue lights on. I kept thinking how many times I see ambulances driving through London and wondered how many of those had little children in it, diagnosed with cancer and a crying parent by their side. Vega fell asleep despite the noise and her little head kept bobbing and dropping to the side. The paramedic just put his hand on her cheek, really softly and held her head for the entire journey. Strange the things we remember.
Vega also remembers and told me then that she found it very scary. She told me about the lights being noisy and that she would have liked to sit on my lap. She also said she never wanted to do it again. She also said she doesn’t ever want to go to hospital again. And that she doesn’t like needles. And yet still, she barely flinches when she gets a flu jab, doesn’t fuss when her port is accessed.
I guess she is so much like me, having up days and down days. Distilling information and letting go of it so she can deal with whatever comes next.