What do Ellie Goulding, Wham, LEGO and potties have in common?
They all provoked a very emotional outburst…
…today has been an emotional roller coaster. There were no hospitals, no treatments, no tantrums about medicine. Instead it was cancer breaking our hearts…and then utter kindness, joy and childhood resilience that made our hearts fill with pride.
I was feeling grateful. Cancer sucks but we’ve been blessed with some extra family time we don’t normally get to enjoy. Lives are busy our schedules are a million miles an hour. This outcome for us is forcing us to slow down. At times this frustrates me but last night I loved it, every second of it…
Good Morning Wednesday
Normal morning in the Godber household…Bilbo demolished a bowl of rice krispies and X2 weetabix. H demanded to play in the garden at 8:30am and whilst he pottered about in his wellies Bilbo told me he was feeling sad. Sad because he is missing all the fun at school. His biggest concern was not being on the star wall.
I explained that this wouldn’t be the case for long and he’d be able to visit school soon. He then pressed that it wouldn’t be the same because he wouldn’t be able to play on the climbing frame because of his wiggle. Again I explained that he can do lots of things with his wiggle and not to worry too much.
This was on the back of him refusing to have a bath or shower. It has been a week. To shower he needs to have a bag tapped over the wiggle and he doesn’t like the tape. But Bilbo LOVES water. And I added this to “the list”
I have a mental list of things to talk to the nurses about tomorrow at Oxford and we’ve already identified now is a good time to start working with the play team. I’ve requested we talk to a psychologist. Bilbo is struggling with anxiety about hospital visits. Tomorrow he has a dressing change (the worst), more chemo and normal checks.
I worry daily what the impact on him is, what is only short term, what is going to cause long term damage, what can we do to help?
Ellie Goulding and Wham
A few weeks ago we started Bilbo’s Happy Playlist, I popped it on this morning as Bilbo and I drove to the garden centre after dropping H off.
I had the list on random, Ellie was first up…
And before I knew it was bawling my eyes out. Thinking about my conversation with Bilbo this morning, how shit cancer is and the army of friends who have my back, ALWAYS. I was a blubbing mess, this is what happens regularly, I keep my cool and then suddenly it hits me. Last night it was whilst I pushed a trolley round Aldi today it was in the car. You can’t predict it and when it happens you can’t control it. As I wipe the tears and try to pull myself together this started playing…
and just like that I was no longer blubbing I was laughing hysterically…thanks Wham!
For a few years after Bilbo was born I would wait online to bag tickets to see Frosts Santa. A few years ago I royally screwed up our santa visit and never went back. We’ve only ever visited since to see the singing reindeer. Bilbo loves it and on a Wednesday morning it was quiet enough for us to go and enjoy without the worry of germs. (I hope)
Bilbo enjoyed everything they had to offer including a full English breakfast.
And as we rode high on our fun time at Frosts we arranged to meet grandad for Pizza Express, cancer got me again.
We were sat drawing, I noticed hairs on the back of Bilbo’s jumper. Mentally I jumped to the conclusion i’d picked the wrong jumper up from yesterday. He’d been for a haircut with Rich so I assumed it was from that…it wasn’t. I then jumped to this morning when I had noticed Bilbo had couple of loose eyelashes…and I’d ignored them.
I couldn’t ignore this. Bilbo sat there unaware of my panic, he carried on colouring in as I spotted fly away hairs slipping here and there across the table. I knew exactly what this means.
And right there in the middle of the restaurant I felt so exposed. I wanted to cry, I wanted to run out of the restaurant and scream. But instead I had to put on my brave mummy face on, suck it up and show my fake smile.
Maybe I thought Bilbo would be the miracle child that wouldn’t lose his hair. Maybe I hadn’t processed that far…
And of course everywhere up the city centre had absolutely terrible hats. My dad and I thought if it is happening lets turn it into a positive. John Lewis, Next, M&S and Debenhams all terrible options or wrong sizes. I’ve made an online order tonight to H&M and we’re going to hit the snow dome on Friday to check out the skiing/snow boarding shops.
LEGO and messages of love
Rich had attempted to join his colleagues at work today. But the reality of Bilbo and mummy being pretty traumatised brought him back home. And since grandad was in town we decided to get H early from nursery and have some family time.
On arrival back home the postman had been and like most days there was something to cheer us all up.
Over the last couple of days we’ve had healthy snacks delivered from my old London housemate Jen, we’ve had the most beautiful hand bunting from Sarah and Evie. We’ve had a care package from colleagues at Pearson which included so many things that made Bilbo’s eyes pop out with excitement. Beautiful cards, thoughtful messages, a gorgeous pillow/book bag. We’ve been spoilt and today was no exception.
Thank you to Silvia a dear friend. Her little package from Italy brought so much joy to both boys. The little gnome has been safely stored ready for 1st Dec. “Very cool” dino stickers from Jill, always a winner with both boys.
And to Tom an ex colleague from Pearson, your LEGO box of wonders made Bilbo squeal with excitement and jump up and down, he was overwhelmed with joy THANK YOU!!!
So Uncle Gavin – Bilbo wants to know when you’ll be home as we told him he needed to save the big bit to do with you when you’re back.
And after another meal of home made spaghetti bolognese (for those counting this was Bilbo’s 5th meal excluding snacks) We had a visit from Bilbo’s teacher. He was delighted – he absolutely loves his teacher Mr Tilley and was so glad to see him. Bilbo was able to share all the cool things we’ve been up to like our trip to LEGO Land, visits from his friends and school friend parties.
And in the midst of us coping with, cancer, medication, hospital schedules, hair loss from Bilbo. We also have a little baby who’s making a huge transition to being a little boy. Tonight he made his first bit of big boy LEGO with help from mummy, his language is coming on leaps and bounds. He is fiercely and scarily clever, Rich figured out he is turning his bedroom light on at night by moving a thick hard back book to under the light switch to give him an extra cm.
And tonight he’s done 5 wees on his potty. And we’ve all screamed with excitement, high fived and cuddled him. His face was beaming with pride. My heart is bursting.
Hair Loss and Sausages
And of course the emotional roller coaster continued until the very last hour of the day.
As I prepared Bilbo for bed, we talked about hospital tomorrow and I mentioned his hair again. Bedtime works well for chats when he isn’t too tired. One on one time seems to help him open up. He often does this when he’s playing a game or chilling with Rich.
He said he was sad and then he stopped and looked me in the eye and said I think people will laugh at me. And once again I have to put my brave face on and tell him no one will laugh, i’ve bought him some cool dinosuar hats to wear and it won’t be for long.
The truth is, someone might laugh, or point, or make a comment. I’ve had enough looks today just pushing him in a pushchair. I’m fully aware he is the size of a 6/7 year old and i’m pushing him during term time in a pushchair. Up until now his illness has been pretty invisible. In the next few week this will change. And we have to face that.
But kids are resilient, so as i’m still deep in thought about how to tackle this new hurdle and my heart is in my mouth. Bilbo is one step ahead of me.
Can we have sausages for breakfast, I think i’d like some bacon, hash browns and some yummy scrambled egg
And i’m back laughing at his funny ways and how he’s licking his lips in anticipation of his breakfast. And as I close his door I hope he is able to rest easy dreaming about full English breakfasts and not the long road ahead.