Bilbo's Journey

Day 743: 126 Days of Silence

Enjoying the views at Brixham, Devon

Silence

I haven’t written since I updated everyone on hitting the half way point 126 days ago. The gaps between my posts have been increasing for some time. And so has my silence.

Why? I have plenty to say. I have plenty of thoughts. We still have ups and downs. But every time I’ve stared at the blank screen, the words haven’t quite made it onto the page.

Grief Cycle

When I first wrote about cancer I described our experience like being on a grief cycle: Surviving a child cancer diagnosis – the first two months. And I think we’ve reached that last phase of the curve, Acceptance.

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Moving on didn’t happen overnight. If I’m honest I don’t think I can magically pin point the moment, or if we’ve/I’ve really fully moved on. But things do feel different.

Maybe it is because we’re in a global pandemic which has certainly put life into perspective? It could be because our daily cancer struggle isn’t as bad as others, and we’re grateful for that. And maybe it doesn’t matter why.

How’s Bilbo Doing?

Next week will mark our 15th monthly chemo clinic. If you aren’t familiar with our pattern, I’ve written a post about the Maintenance Cycles.

Bilbo’s bloods have been consistent and his sickness is under control. He sailed through his lumbar puncture in October. We will head back to Oxford in December just before Christmas for his next one.

He doesn’t love going to the hospital once a month. And he definitely doesn’t love the bi-weekly finger prick tests for his bloods.

We experience a lot more ups than downs these days, but we still have moments, finger pricks, chemo clinic and lumbar punctures are still our new normal.

Dermatology

The only issue we seem to be facing at the moment is to do with his skin. He developed a problem with cracked lips in the summer and they just won’t heal. He also has a patch of skin on his face. It could be chemo rash. He also has some problem areas on his hands and feet. Could be chemo, it could be from constant washing and hand sanitiser.

Bilbo is still working us both to get a puppy, for now we’re happy with visits from Dugie.

He doesn’t complain (he never does) but we need to try and see if we can help improve the situation for him.

Beyond cancer Bilbo is thriving. He worked so hard on his learning over the lockdown with my mum, his determination has paid off. He’s moved up reading levels and he’s so happy to be back at school, with his friends. He’s enjoying learning and takes great pride in sharing all that he has learned at the end of each day with us. Over the last term he’s been learning all about Beatrix Potter.

Rich and I couldn’t be prouder of him and last week he was given a very special award from his classmates.

How Am I Doing?

Our cancer anniversary always hits me hard. A good time to reflect: Day 365: A Year Of Cancer.

I have unresolved guilt around his diagnosis. In September/October 2018 our life, my life was going at a million miles an hour. I know in September my baby was thriving, he was full of endless energy. But somewhere towards the end of September and into October he started to fade.

It was slow, slow enough to miss the signs. In Bilbo’s case his energy, his weight, his colour and his ability to heal a bruise.

September and October haunt me. I see the ghosts around every corner. I see them on the school run, Bilbo’s birthday, memories of what we were doing, where we were – reminders everywhere.

My default response – keep busy. And this year was no different. I focused on delivering a Learning at Work Week event for 22,500 people.

Choose Love

I also joined the National Choose Love campaign as a collection point in Milton Keynes for refugees. We filled almost 30 boxes with donated nappies and toiletries for Greece.

We filled almost 30 boxes with nappies and hygiene items for refugees in Greece, in partnership with the national Choose Love campaign.
Rich did the heavy lifting and drove the first batch down to be added to the other boxes ahead of being sent to Greece.

Our Other Son

Look at that face…

Throughout the last two years our “other son” has always taken a back seat.

Harrison certainly has no issue making his presence felt. He is at the centre of the Godber household. He embraced starting school with energy and excitement. The last few months of him starting school have been joyful to experience. We were robbed of that with Bilbo.

Harrison has adjusted to school life really quickly, his only complaint is when he doesn’t get to go. Explaining half term was interesting.

He’s such a smart and happy little boy. Harrison is determined, head strong, vocal and loving. His sass tries my patience daily. But his kisses, cuddles and beautiful smile melts me…which I’m certain he uses to his advantage.

Gratitude

And finally we continue to be grateful. I’m grateful in some ways I’ve not needed to write this blog as much. I’ve often used the blog as a crutch. When things haven’t been so great, I’ve written more. The silence is not a bad thing.

I am grateful that we are able to enjoy a simpler, less complicated life these days. We know 2020 has been a tough year. And it will continue to be a challenge for some time to come. But we can see the green shoots of hope. We can see the light at the end of the tunnel.

We remain positive, we continue to be grateful and we look forward and hope for better times ahead.

2 Comments on “Day 743: 126 Days of Silence

  1. Great to read this, Kim. Know that you and your family are in my thoughts. Sending love.

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