It’s now November and we are getting closer to Christmas.. this is a tough time for our family for various reasons but this year I can feel my PTSD creeping in and second guessing everything. Without the ‘safety net’ of Chemotherapy I’m questioning whether every cough, sniffle, tummy ache, or complaint is a relapse. Looking back on photos and videos from this time in 2015 to see if I could see any change in him, any signs to show something was wrong.. I can’t, I honestly can’t see anything obvious and that scares me. We had NO CLUE anything was wrong with Dylan until his lungs were 80% cysts and his right lung collapsed on Christmas Day. He doesn’t have that much healthy lung to get into that mess again, I need to be able to know if it is coming back before it is too late this time!
When treatment ended I think a lot of people expect things to go back to normal for us but that really is not the case. Even though scan was stable this time and his line can hopefully come out soon (still ruddy waiting on that), our lives will never be normal. We will forever live each day anxious of the disease coming back. Every illnesses or bump on the head could be the one to trigger those naughty rogue cells to cause destruction again. When he finally catches up on his preschool boosters next year, even they could set them off on a rampage in reaction to the vaccines which petrifies me, but of course not vaccinating him is just as risky. Plus at some point after January we need to let him catch Chicken Pox so he can build up an immunity whilst he is still a child (and not on Chemo of course in case he needs it again ever).
It’s not ‘normal’ to feel this way. It’s not ‘normal’ to worry about your child dying every single day the way I do. It catches me in waves, simple things set me off and I’m right back in that moment of saying goodbye to him and it’s still such a very real worry for me that it could happen again. I see so many families on social media (some of which we know from our ward at the hospital) whose children are heading down that path at the moment or have sadly passed away and it effects me in a way now it never did before. Prior to Dylan getting poorly I never dreamed I’d outlive my children, it’s not a notion that ever really crosses your mind, it is terrifying and consumes your life and you simply CANNOT shut it up no matter how much you want to..
I often feel like switching off and shutting out the world as on particularly bad days everything seems to trigger me but it really doesn’t help I’ve learnt. I’ve been trying really hard recently to work on my issues, to get out the house more, to make new friends, to connect with the few old ones that stuck around but I just feel so ‘different’ from everybody else now. I put on a smile and my big girl panties and head out into the world and for the most part you’d never know I’m battling these demons in my head. I don’t like to talk about it all either to be truthful, I’d love to have a conversation not about Dylan for a change actually so I will often change the subject. But yes of course deep down I’m still that ‘Cancer mum’ and always will be even if he is NAD for now..
