Day 203: A Day In The Life Of Cancer
I’ve thought long and hard today about posting this photo. Is it a window into the most personal, horrendous point in time in our life – yes! Yes it absolutely is.
I was going to post it just to instagram with a few words. But a few words became some sort of cathartic offloading of an utterly shit day and I decided to share it here instead.
I want to share with you the story behind the image…
I want people to understand what is behind this picture…there are so many emotions, so many little things that have become big things, a little boy who can’t fully explain his feelings, a terrified little boy. A little boy who can’t even fully understand his own feelings as so many of them come from the cocktail of drugs in his system.
The story behind the image…
Last night we remembered today was school class photo day.
Today we were scheduled to return to Oxford for more chemo.
This morning Bilbo woke at 6am starving but due to steroids couldn’t decide with ease what he actually wanted to eat.
He settled on weetabix but left half of it.
At 7:35am he decided he wanted pizza
Cravings are part and parcel of steroids so you just go with it. He’s starving but chemo has screwed his taste buds up.
I offer a pizza from the fridge “no it has to be a fresh one and I’m watching you mummy” what I serve up isn’t really fresh it’s a base that I build up with toppings. But it is what he wants.
He starts eating hot pizza at 8:10am
He needs to be at school at 8:30am he’s still in his pj’s.
By some miracle Rich gets him to school on time. Explaining we will pick him up at 9:15am for hospital.
I tackle getting myself ready and H. Remember this is the kid I can’t leave in front of the TV whilst I shower because a. he has a meltdown when Rich leaves the house and b. can’t be trusted.
H does everything in his power to not get ready, hiding under the table, refusing to get dressed, refusing to brush his teeth. Demanding any dummy but the one in my hand. The same with his blanket.
In that moment I curse the fact we haven’t tackled getting rid of the the dummy – I want it gone but I don’t have the strength right now. I make a mental note to go cold turkey at the weekend, again!
We drop H off and pick Bilbo up at 9:25am. I’m filled with joy that he won’t be absent from his school photo. Wracked with guilt for being late.
The joy is short lived.
Bilbo is sad.
His sadness and “I’m bored” turns to something else.
He’s frightened. He masks it with telling us he is hungry, he wants us to stop for food.
Then the hunger turns to begging to go home. We later learn the hunger was a ruse to try and get us to stop or turn back.
The begging to go home turns to anger and his tears are flowing, he’s sobbing and then softly cries “I don’t want to be poorly anymore”
My eyes fill with hot tears. I’m grateful for my sunglasses. I reach round and hold his hand. I can feel him trembling.
I chew the inside of my mouth to stop myself from crying.
Rich and I try to figure out how to get him off the topic and thinking about something else. Our efforts are futile. Bilbo’s reached his limit.
Most of how he is feeling is probably due to the steroids. But we also have to be mindful that Bilbo has been through so much.
He’s been through 200 days of pokes, treatment, strangers, medicine, procedures. He’s felt sick, he’s felt tired, his moods have been up and they’ve been down.
Rich offered up his mobile and we appeased him for the last 10 miles to Oxford.
As soon as we arrived at the ward the tears began again. He clung to me and wouldn’t let me go. I distracted him with the You Choose book for every page he said he wanted to do whatever mummy wanted to do.
He clung to me as we did his observations and got incredibly anxious as he was examined by the doctor.
We’ve been through some crap in the last 200 days but this is the first time something as simple as observations and a check up have caused him so much distress.
I’m left worrying how have we got here? What has gone wrong? What did we do? How can we make it better?
Kamran Ward Playroom
The wonderful Kamran playroom saved us…some magnetic toys amused him through the rest of his time on the ward. He’s chemo took just over an hour to complete and then we got out as quickly as we could.
Over the next few hours we saw Bilbo come back to life. Seeing nanny raised his spirits. Bilbo read to nanny, showed off his yoga and dancing with Harrison on the decking for the new play house. (watch our insta stories to see our crazy shenanigans)
The pain of this morning felt like a distant memory.
And this brings me back to the photo I took. I took it because when we turn the day around for Bilbo it is important to remember these points on our journey.
It is also important to share what a day looks like for us, so people can understand how heartbreaking being a parent of a child with cancer is. And what the daily struggle looks like.
Rich and I kick ass at it most days – you only have to look at our kids smiles to know we’re doing something right.
But when the lows come – we’re winging it. And we’re winging it whilst trying to keep it together. Whilst our hearts are breaking and whilst we wish more than anything in this whole world that we could swap places with Bilbo.
The video below really struck a cord this week. In fact it made me bawl my eyes out. I’ve been every one of these mums…we cry silently in the shower or loudly in a car on our own. But once we’re back in line of sight of our children we pull ourselves together and get on with it.
And between Rich, my mum and I, we’ve pulled a positive day out of the bag. On balance we made more happy memories than sad.
But despite the turnaround this morning will be etched in my memory forever.