Shout out

ALL

We don’t do cancerversaries anymore but today is the day when Vega was first diagnosed with Leukaemia four years ago in 2012. She has been in remission for well over a year now.

Just this week she has received her first issue of Shout Out, a magazine for children aged 7-14 who have or have had cancer, published by Click Sargent. She turned seven in the end of December and hence has now received the magazine for the first time. A reminder that, no matter how much older she will get, no matter how many years of ‘in remission’ she will be, she carries a legacy of being a cancer survivor. I wrote about this before, how she will forever have to answer questions about medical history to doctors, insurance brokers and new friends.

She is doing really well. Very similar to the previous year we had a bout of illness over Christmas that left all of us freaked out once again and warranted a visit to the hospital for bloods, to check all was ok. Thankfully it was. With each of these worrying episodes I tell myself that I will not freak out so much the next time. That each of these is a lesson to be learned, and that I can allow myself to relax a little more. In reality this is hardly the case. It doesn’t feel like a learning curve, or not even an adjustment. When you are worried about cancer looking symptoms you are just worried. And it isn’t the ‘mhm something is up’ worried. It is the full blown ‘oh my gawd I can’t eat or sleep and what if this is it and now she will die’ kind of worried. Post traumatic stress I hear you whisper. Yes, I agree, in whispering tones too.

Stomach is continuing to be an issue and a frustrating one too. The pain can be pretty severe, and on those days Vega eats very little and sometimes there is no pain at all. All our exclusion diets have been inconclusive and we remain with the Gastro Team, very sporadically, and most visits feel very useless.

We are down to six monthly visits at the Marsden with a visit at Kings between. Our next appointment is on Tuesday and I am sure we will discuss the Christmas ill health episode in more depth.

I have not blogged for almost half a year and still my stats are occasionally spiking. People searching for Escalating Capizzi or Vincristine or such and coming across my blog. It makes me real sad because I know that that person on the other side of the search is a parent or loved one of a newly diagnosed child looking for some kind of reassurance, help, answers. I hope you are finding something useful in all my ramblings.

I wonder if my blog inspires hope in some people? I’d hope so, and understanding too- it would really feel like some writing time well spend.

(Plenty of use of the word hope here. This is deliberate.)

See you all for two years in remission blog post!