Day 118: Living Our Best Life London’s Calling

It has been 8 days since i’ve written anything. Bilbo has spent 3 days in hospital and we’ve had a pretty tough time. BUT I didn’t want to write yet another post about how crap things are. So I didn’t.

Today has been PHENOMENAL Bilbo and I have had the most wonderful day out in London – i’m buzzing, i’m so happy and we’ve enjoyed some level of normality. Today has been a HUGE distraction from what we are still waiting for the MRD.

How’s Bilbo doing?

We’ll get the update on all things cancer out of the way.

If you recall Bilbo has been having a pretty miserable time I wrote about it in Mother of All Meltdowns. His taste had been off for a few weeks, he’s been nauseous and has generally not felt great.

Half Term Fun in Short Supply

Despite not feeling great I was determined to enjoy half term with Bilbo. We had a whole week mapped out.

We managed two days of half term fun, before we ended up in hospital.

It came on so quickly which was pretty scary. But in true Bilbo style it also passed pretty quickly too. However the rules are he needs 48hrs of IV antibiotics. And so we dug in for the long haul.

I’m sure over our cancer journey there will be multiple hospital stays. And i’m grateful it wasn’t a complex one.

We were even able to leave before the last dose of antibiotics to enjoy some winter sun on the promise we’d return at 6pm for the last dose.

Hospitals Suck

But being in hospital sucks, Bilbo has to be isolated, he can’t leave the room and it is bloody boring! For Bilbo, for mummy and for daddy.

And it is heartbreaking separating Bilbo and H. Harrison gets terrible anxiety when he’s apart from Bilbo and his little voice repeats “where’s my Bilbo?”

It was also half term and I felt robbed of another holiday with Bilbo. Our half term of fun in October was when we were diagnosed. Christmas was miserable with nausea and now this.

And whilst we’ve managed to squeeze some fun in we’ve also had to pass on some. Bilbo’s moods have been very up and down. Weekend medicine hass been a challenge, he’s not wanted to be very social. And I blame all of it on him being shattered. Bedtime is late in hospital and not very restful. He’s been snappy and angry – to be fair we all have.

Living Our Best Life

But once we’d managed to get the hospital visit behind us, things started looking up.

Bilbo’s appetite has started to return. And he was able to enjoy a visit with Grandma and Grandad.

London Calling

Today we headed to London for our postponed day of fun.

Bilbo’s school had a teacher training day today and so after a blood test and dressing change with Vicky first thing. We made a run for it.

And what a bloody amazing day we had. It was brilliant. We packed as much fun into the day as we could. Bilbo led, he made the decisions and the glorious sunshine definitely helped!

First we dropped by my office at 80 Strand to drop off some cakes and say hello to my colleagues.

Then we headed to the London Transport Museum

After lunch in the park, Bilbo asked to go on a boat. It was a blast especially the commentary.

Lego Store

Our final destination was the absolutely fabulous Lego store in London. I was blown away by how cool it is and Bilbo was fairly impressed too.

What next?

It doesn’t look like Bilbo’s bloods are where they need to be for the MRD to happen on Wednesday. So once again we wait and see how he recovers this week and hope for the best for Monday.

Today was the escapism we needed but tonight the worry returns. I just want this bloody test done so we can move on and start thinking about what next.

And what is next for Bilbo, he’s off to school tomorrow and he can’t wait!