So today is Saturday and Ellis will hopefully be allowed home today, if his levels come back ok. We’ve been in here since Tuesday and although that’s only been 4 nights, it feels like a lifetime ago. He has finished his 2nd round of chemotherapy just 16 more to go over the next 6 months.
This hospital is incredible, the NHS is incredible, we really are so lucky. He has been fed, had expert care and been looked after better than a Mum could wish for. We are beyond grateful.
But life on this ward is hard. Being 12, Ellis isn’t eligible to go upstairs to the teenage ward, so he’s on the children’s cancer ward. There is baby up the corridor who looks no older than 4 months. He’s the happiest, smiliest baby you’ll ever see and if it wasn’t for his surroundings you would not know he was ill. Then you have the isolation rooms. The Chernobyl type rooms where the nurses have to get kitted out from head to toe before they enter. These are the kids who are poorly on top of the cancer. We hear the screams shouting “I don’t want to die” and “I hate you, stop hurting me”.
Some nights have been packed full, noisy, bright while others we’ve been on our own in the bay. It’s so unpredictable.
I met the most amazing lady the last time we were here picking Ellis up and her boy was opposite Ellis again this time. Her son also had Osteosarcoma and is only 10. She took me under her wing, told me about all the things the nurses don’t and made me feel at home. She explained about levels, tests, operations etc. I asked her how she has stayed so sane throughout, as she was nearing the end of their treatment. When she replied with “wine” I knew we would be friends.
It’s weird, being in such a busy place you can feel so alone. It’s so noisy with all the machines and buzzers constantly going off, nurses coming in to change drip bags and people coming and going. It’s hard to explain. It’s almost like you’re on the outside looking in. Someone else is caring for your child, all you can do is helplessly watch.
It’s a strange situation. It very quickly becomes your norm, almost like your second home. You settle in to your little bed, carrying your child’s wee in a pot so it can be measured each time they go, knowing what noises mean what on his drip stand. Going to the kitchen to make tuna on toast as that’s the only thing he will eat. Numerous runs to the local Tesco to buy tuna and cucumber and whatever he fancies that day, only getting back for him to tell you he no longer wants it. Making him drink when he feels physically sick because we know that the quicker he drinks, the lower his levels will be and the quicker we can go home.
Yesterday I was talking to a lovely Mum about regular things, laughing and joking when all of sudden her boy said he felt cold and laid down. Then quicker than you can blink, he had a team of nurses round him, the curtains were drawn shut and he was screaming. And just like that, your new found norm bubble is burst and you’re back in the reality that is a cancer ward.
They have play therapists here who are worth their weight in gold. There is one guy who Ellis really likes. He has been playing basketball with him, beating him at FIFA and making him feel better emotionally. It’s amazing. Yesterday with a mixture of the chemo and teenage hormones, Ellis tried to stay in bed all day. But with the therapists help, we pursued him to get up, go for a walk and have another go at beating him on the Xbox. I took that time to go and sit by myself. But quickly realised that there isn’t anywhere you can go to escape. The tea room is sometimes empty, but has people coming in and out. His bay was heaving with patients and visitors. The only place I could think of was the lift corridor. It has lifts either side, the kids ward one end and the other a huge floor to ceiling bay window over looking London. So I took myself out there and just sat. I watched the world go by outside, everyone going about their daily life and envied them. I struggled to remember a time before all of the hospitals and scans. Silly because it’s not even been 2 months yet, but it seems like forever.
But today is going to be a good day. I have everything crossed that he will go home. I will get to see my beautiful girls and my amazing husband who I miss more than I can explain.
All ready for him to come up again in 3 days time for chemo number 3.