90 Days of Cancer…

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I wish this picture had sound to capture Bilbo’s laugh. He thought it was hilarious that we’d found a stick longer than daddy. We dragged it for a bit then daddy chucked it back into the hedge. It was cold and damp out but the boys seemed to enjoy a walk, a bit of a ride in the trailer and a brief stop at at the park.

Today marks 90 days of cancer. And as ever we’ve had ups and downs this week. But i’m pleased to report mostly ups for Bilbo and that is the best we can currently hope for. The truth is he’s being bloody fantastic and we’re incredibly proud.

What is going on in the Godber household?

  • Bilbo is doing great
  • No one is getting any sleep
  • Self Care or not to Self Care
  • We’ve made new friends
  • We’re continuing to take it day by day

How’s Bilbo doing?

I wrote about how we were dreading the next few weeks in my post here: Week 10: Here we go again… we still are.

So far the increased dose of anti-sickness has kept Bilbo well so far. But as we recall from last time it was the second week that was challenging and that starts tomorrow.

It is breaking my heart that every day and night i’m lining up the medicine for him to take. And throughout this week he’s taken every single one like a champ. And without complaint.

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On the weekend this is the cocktail of drugs I have to give Bilbo morning and night. He doesn’t complain, he takes it all in his stride. It is at these moments when I’m blown away. But my heart also breaks a little knowing that this is his life, our life for the next 3.5 years.

I can sense the change is coming…we’ve gone from “this banana medicine is yummy” to “mmmm is this the same medicine?” Even if we manage to keep the sickness at bay, chemo will destroy his taste buds and will make him increasingly sensitive to smells.

As ever we continue to pack as much into life as we can. Bilbo enjoyed gymnastics with his school friend Curtis this morning. Although I noticed he was much more tired today and he’d lost some of his bounce.

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H has had fun baking cookies and cakes this weekend. He isn’t very patient waiting for them to cook.

No one is getting any sleep

For the last week Bilbo has been getting up before 6am. And he doesn’t go to sleep much before 9pm. I don’t know whether it is the medication or his brain on overdrive, but he’s super restless.

Bilbo doesn’t nap and we are still having to enforce rest time. But when we’ve been out over the last couple of days it is clear he may be mentally awake but he is physically struggling. He tries his hardest to keep up, keep going and he’s continuing to amaze us daily but i’ve noticed a change.

godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, CLICSargent, giveblood, gofundme, bilbosjourney, 90 Days of Cancer
Bilbo is definitely more tired. I’m making the most of the snuggles but I worry he tries to do too much.

Of course Bilbo isn’t the only reason i’m not personally getting any sleep. I can’t sleep, call it insomnia, call it anxiety. I don’t really know but i’m struggling.

Wide Awake Club

I’ve never needed a great deal of sleep, but before Cancer I used to go to bed and when my head hits the pillow I was out like a light.

Now it can be hours before I can switch my mind off.

Sometime I mentally think about what I might write in this blog. I list out things I need to do at work. Places I want to book for us to go when Bilbo is well enough. Things I wish we’d done before bastard cancer. I lie in bed worrying about Bilbo, the what ifs. Worrying about all the families we’ve met who are travelling similar routes to us, or worse. Thinking about all the families we’ve met who are suffering.

I think about life’s big question, what do I do next in my career? What career? Cancer is robbing me of this right now? I beat myself up for having these thoughts because Bilbo’s health is more important than my career.

Of course I think a lot about Brexit, I wish I didn’t.

And I think about refugees A LOT. It is freezing and the EU isn’t doing enough. It makes me sad to know I can’t help this winter. I worry a lot about the families who are currently in Moria. There have been power cuts and right now the weather is terrible

Then I think about Bilbo again, what we’ve gone through so far. Are we doing what is best for him? How will Bilbo’s life be post cancer? Will Cancer be a part of our lives forever? Of course it will? So what does that mean for our lives post cancer? How do we live our best lives? Do we stay in our jobs, our house? Or do we follow those dreams we have? What next for us?

Bilbo has been asking so many questions about cancer. We’ve read all the books this week, we’ve talked every day about wiggles and chemo.

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Olly the Brave has a line just like Bilbo and also a removable mane for when the time is right to have that conversation

He’s using cancer terminology, he wants to know what is what. He wants to understand why he has cancer and we don’t. He wants to know why he has a wiggle and more importantly when he is going to get rid of it. And this weighs heavily on my mind. Are we answering his questions right? what is driving the questions? Is he ok? Will he be ok mentally? WHEN ARE WE GETTING OUR PSYCHOLOGIST appointment! (it has been cancelled and rearranged)

I’ve become a master at online shopping after midnight…EEK! But at least i’m getting the DIY jobs done we’ve been putting off. Any suggestions on cloakroom tiles send them my way.

And then repeat all the questions, avenues and rabbit holes again. And that is why i’m struggling to sleep.

Self Care

Everyone asks are you making sure you’re looking after yourself. My go to answer was yes. And until this week I wasn’t lying. Emma is still coming round to do my nails, I’m going to see Gianni my hairdresser next week.

I’ve had regular nights in and out with the girls.

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Friends since school, besties for life!

But being exhausted is leading to me making poor food choices, i’m not drinking enough water and i’ve done zero exercise since I can’t remember. This has to change – I feel rubbish. If I i’m not looking after myself I’m going to be no good to anyone.

Something needs to change, this week I’m going to block out some time to do something each day. I’m not sure i’m going to be out running 5km but I need to start somewhere…this is working progress.

I’m putting it out there into the universe so you all know my intentions and I can keep you posted.

We’ve made new friends

Whilst daddy and Harrison went to Nottingham to visit Grandad and Rich’s grandparents. Bilbo and I headed over to our first Henry Allen Trust family meet up.

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Harrison and Daddy visited Grandad in Nottingham today.

I will do a proper blog post about what a fabulous charity they are and all about Henry, Dawn and Mark Allen. But today was really about letting Bilbo be in a safe place where it was about him and for us to get to know other families.

godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, CLICSargent, giveblood, gofundme, bilbosjourney, 90 Days of Cancer
Bilbo and I painted pottery at Playful Pottery today. Bilbo painted a snake and a heart for nanny. I painted a mug with love hearts and rainbows.

After the quizzing on cancer this week Bilbo has been on form today. He’s given his friends a lesson all about his wiggle in the middle of gymnastics. He even got it out to show them.

Today whilst painting pottery he was talking about “the chemo” and his “wiggle” he was happy telling people he has cancer rather than he is just poorly.

The best bit was when he came back from the play corner and announced he’d made a new friend. In fact he made more than one friend today.

From the boy who was shy and reserved when he arrived to the boy he told Dawn is new friend a hundred stories before we left. It really was a special day.

We’re continuing to take it day by day

Tomorrow begins a new week. Bilbo is mid way through the cytarabine he will have more Tuesday through Thursday.

We wait and see, we respond to how Bilbo’s feeling day by day. As long as he’s chilled and loving life, so are we.

And for me, tomorrow is a new day and I will also be taking it day by day, wish me luck!

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