Just when we were getting back into life at home, this happens. Within a few hours, Ellis’ temperature went from normal to 38 degrees. We have been advised to follow our normal protocol of visiting our local children’s ward if he ever has a fever during chemos, regardless of what is happening elsewhere in the country.
If I have learnt anything these past few months, it’s that things can change very very quickly. One minute you are standing on your doorstep, clapping and cheering for the amazing NHS staff and key workers, next you’re sitting in a hospital room eagerly awaiting blood results. But no matter how many times it happens, you are never prepared. You are never not scared.
Ellis absolutely hates coming into hospital now, which is totally understandable. He’s been in hospitals more than home over the past few months. So telling him each time that we need to go, breaks my heart. I hate seeing his face when I tell him. But I know he has to go.
It’s currently 12.20am and he’s just being hooked up to a syringe driver with antibiotics, while we wait for blood results to come back. The beeps of the machine are too familiar and go right through you. You hear them in your sleep.
I do however, feel like I know what I’m talking about now when the doctors ask me questions. As soon as I open my mouth to answer, fucking Holby City comes out. It’s weird. Nice because I understand what’s going on with his care and I can factually inform the team here about his current blood tests etc. Handy when you’ve been to 3 different hospitals with him in as many weeks.
One of the first things I look for when he is admitted to a ward, is the parents sleeping arrangement. UCLH give parents a foam fold out bed, which at first I found really uncomfortable, but since being to other hospitals it’s my favourite. At QEQM the parents get a chair which pulls out into a long chair. I can’t call it a bed because it doesn’t feel like one! It’s so short so my feet always hang off the end and it’s harder than the floor. You wake up (if you managed to sleep in the first place) hurting all over because it’s not even cushioned. Not good for someone like me with fibromyalgia, because I already know tomorrow will consist of a migraine and feeling like I’ve been beaten up.
Who knows what tomorrow will bring. Maybe we will be allowed home, maybe we will be in for 4 days like last time. We just have to wait and see.
I need a coffee and a cuddle. Not particularly in that order.
Cancer sucks. But when it’s your child, it sucks that little bit more.