As always in my blogs, I will be as honest as possible. I have always wrote them from a Mum point of view, rather than Ellis’ as I feel that is his story to tell if and when he wants to.
So obvious bits aside, what is life really like for a Mum of a child with cancer? Of course it’s hard, emotionally it drains you. You feel helpless and useless while your child lays there, relaying on strangers to make them better.
But what about the parts no one talks about in fear of coming across like they are not coping or not strong?
No one talks about the guilt or the anger.
No one talks about the side effects of all the drugs.
No one talks about the effect it has on your own mental health or how you sit their hungry, not eating because you don’t want to or can’t leave your child.
Ellis has a drug called Dexamethasone alongside his chemotherapy. It is a steroid normally used for Lupus, arthritis and those kinds of conditions, but with children like him, they use it as one of many anti-sickness medicines.
It is mood altering and can turn the most placid, laid back child like Ellis into a moody, angry monster. He has been the worst this week with it, being snappy, rude and plain nasty.
I try my hardest to remind myself its not him, its the Dex but it’s so hard. Due to Covid, we are isolated up here, so I don’t even have other mums to chat to. I try to occupy myself with Corrie catch ups or Netflix, but it’s impossible to take my mind off it.
Due to the Dex, he is demanding to the extreme. I will always help him when he is feeling poorly, but it’s so hard when he is being rude. He demands things like ‘put my bed up’ when the control is attached to his bed and I’m all the way across the other side of the room. He will demand toast, then refuse to eat it when I get back. Or decline anything when offered when I go to make a tea, then change his mind as soon as I am back.
I know it sounds like I’m being horrible to him, I’m not. I’m being horrible to the Dex and the other bunch of drugs that he has pumping through his system. I miss my Ellis, the sweet laid back boy who is thoughtful and funny.
It is only temporary, he has refused any more Dex as he knows how it makes him. He hates it. Which makes me feel more guilty for moaning.
All he wants to do today is lay in his bed in the dark, watching you tube on the projector, which is fine. But it’s pitch black 24/7 so my body has no idea what time of day it is. My head is pounding from no asleep and being a general dogs body and I’m so hungry. The children get fed here, but adults don’t. I used to go to the shops everyday for a little walk and to get my food for the day, but because of Covid I can’t. We are still shielding until June 30th, so I haven’t been into a shop since March. You get a tiny square in the big fridge to use, but its not big enough to store anything worthwhile. Because I am gluten free, it makes it all that much harder. Ellis will order food, then when it gets here he doesn’t feel up to eating it, so it goes to waste as I can’t eat it. So I live off scraps of veg or chicken that he’s ordered that happen to be gluten free.
You get used to brushing your teeth in warm water as that’s all the bathrooms have for some reason. You work out ways to negotiate the awkward walk back to your bed after a shower, walking past other rooms and patients, hoping you have remembered to put your bra on. You get used to doing your make up with no mirror, trying to preserve even the tiniest bit of something that makes you feel like you.
It is like being in prison in here. I know that sounds dramatic and it’s Ellis who has it the worst, that’s why it’s never spoke about maybe. But I know I’m not the only Mum who feels this way.
I’m not saying there needs to be a bar and a salon in kids wards, but that would be nice.
It’s these bits that I wish were talked about. The bits you have to figure out on your own- mainly by trial and error ( thinking back to my first in-hospital shower, when I forgot to take in a towel..) The little bits of support that would make us parents not feel so alone.
It should be spoke about more, parents should be able to have a moan without fear they will be judged or frowned upon.
So judge me if you want.
If I can make one parent who read this, not feel like they are alone, then job done.