The new normal

I was chatting to a friend the other day and I told her that 65% of the time I feel that there is nothing wrong and life is just carrying on. The regular blood tests have become part of my new norm, as have the discussions around what Chemosaturation is and why I haven’t lost my hair and even the weekly post procedure questionnaires that ask me to rate if ‘I am losing hope in my illness’ from 1-5 have formed part of my everyday life. I’m back at work which brings a sense of normality, the kids are still leaving their shit everywhere and still nobody in my house can change the toilet paper…

But then there are times when it catches me unaware and it is like a punch in the gut.

I was chatting to the teenager last week (a rare occurrence these days unless she wants something) and we randomly started to talk about weddings. She was asking about different types of weddings and if there was a certain way to get married. I promptly replied that she can marry whoever she wants, wherever she wants, but she could just give me and Mr-Me-Myself-And-Eye a heads up first that would be great… As soon as the words left my mouth, the gut punch came. A proper left hook straight into the stomach. The likelihood is that I am not going to be alive to be at or even hear about her wedding. Even if this treatment prolongs my life for 3,4 or 5 years, I am most likely going to die before either of my kids marry or have kids or even reach 21….that really, really sucks.

These types of reality are the ones that hit hard and make me really sad. Sad for me yes, but more sad for the kids and Mr-Me-Myself-And-Eye having to relive the pain every time they celebrate something. I have started to put together boxes for the kids with significant birthday cards and notes/photos for them, but I also have thought about whether that is selfish of me? Will they want to be reminded of what they have lost at significant times? Will I be putting a dampener on their celebrations? It’s a difficult thought and feeling to navigate but I and we can only do what feels right for our family… it really REALLY sucks though.

I try not to dwell on these thoughts, or I hide them away until I’m on my own and have a really good cry and then I just try to get on with the new normal and creating memories… like teaching the family how to change the toilet paper…. a lasting memory and legacy from me to them.

Hx