Day 272: The Wait Is Over
In the Godber household we’ve been waiting for two very important things and the wait is over!!!
The Wait Is Over: Harrison Turns Three
First up Harrison turned three! It has felt like we’ve been waiting for this since my birthday in May. In our house we always say “and who’s birthday is next…” and so we’ve been counting the days down for the best part of 68 days.
And the last 2 weeks have been intense…but well worth the wait. Harrison enjoyed a day with nanny and Bilbo on his birthday. And yesterday we celebrated with a party at the house (despite the torrential downpour most of the day)
This last year has been tough on him. Being two is tricky – being two when your brother has cancer is extra tough. He’s a smart kid and he’s seen a lot. Even tonight when I mentioned the nurses are coming tomorrow he said “Bilbo better now, no more hospitals”
He knows that his brother has suffered. And Bilbo is life for Harrison. He loves his brother deeply and unconditionally. I hope their bond never falters and they remain this close for life.
The Wait is Over: Maintenance
And the other thing we’ve been waiting on the green light for is maintenance. At this point we believe we will be starting on Wednesday. Bilbo will have bloods first thing tomorrow and then we will head to Milton Keynes for clinic.
A quick reminder about maintenance: this is the final phase of chemo but the longest. Bilbo will be having chemo from Wednesday through to March 2022. The protocol we have is from the UK trial so we do not have pulses (vincristine and steroids) this leaves Bilbo taking daily chemo every day, a weekly chemo and then a lumbar puncture every 12 weeks.
Once maintenance is underway we can get Bilbo booked in to have his hickman line taken out.
How’s Bilbo doing?
He’s doing great. Three weeks of no medicine has been great for him. He’s appetite is back, he’s full of energy, he’s happy. He has colour in his cheeks and he’s got a jam packed summer holiday planned.
My mum is looking after him through the summer and week one has seen him go exploring and make new friends.
I’m so grateful that we were able to get to this point in his treatment for the summer. And I pray that we continue to have luck on our side for the remainder of his 6 weeks holiday.
How am I doing?
I am up and down. I worry about what maintenance is going to be like. There is a lot of talk about how it will be easier. It is gentler. Our lives should be a lot more normal. I WANT this, I want this so badly. But I also know cancer is incredibly unpredictable.
Over the next few weeks we need to toggle Bilbo’s dosage to get him on the right amount for what his body can tolerate. This scares me.
Whilst he still has his wiggle, there is always a risk for him. We saw that last week with the hospital visit, which was a stark reminder of how quickly things can get scary, Day 260: Too Good To Be True
Rich is away this week with work and next Monday I have a planned business trip to Boston. The trip is giving me anxiety.
My New Normal
I am learning to live with my anxiety, but what scares me most is how dehabiliting it can be.
It isn’t just a mental thing, it isn’t just in my head it manifests itself physically too.
In particular I feel a tighten from my stomach and up through my throat. I feel like someone is sitting on my chest. My stomach churns with a feeling of adrenaline butterflies and emptiness.
And the anxiety for this trip is more than just worrying about Bilbo. I have nothing to worry about, Rich is home, my mum is around and we’ve brought in additional back up with Rich’s mum and step dad. He will be fine.
It is me, it is my head it is knowing the last time I did this trip when I came home my life was turned upside down. It is reliving those memories, when the taxi pulled up at the house and I jumped out to make the school run my gorgeous boy wasn’t well.
The mum guilt I will take to my grave that if I hadn’t been so busy that month of October I might have seen the signs sooner, I might have got him to a doctor earlier. Maybe if we’d got it earlier Bilbo would have had the regimen A protocol and not the regiment C.
It will be fine, I’m sure and i’m looking forward to the trip. The mummy guilt these days comes with an extra side of cancer guilt. But the reality is it is part of lives for the next three years so we need to learn to live alongside it. NOT let it dictate our lives. And of course the truth is cancer is a part of our lives forever now. We’re forever changed by it and it is forever a part of us.