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Bilbo's Journey

Day 110: The Mother of All Meltdowns

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I’ve bottled it all up for weeks but seeing him so peaceful last night and calm after such a shitty shitty day made me hate cancer just that little bit more…

Last night the feelings, the worry, the tears, the anxiety all came pouring out. It was 1am, Rich was in the spare room, Bilbo was in with me and after checking his temperature for the hundredth time that day, I broke!

The tears flowed and I felt so alone. This is the trouble with cancer you can’t predict when these moments will happen.

I’m grateful that within a few moments of posting my feelings online and letting it all out I had messages of support pouring in. The bonus of being friends with so many people on different time zones.

Thank you for all the messages in the last 24hrs they’ve reminded me just how many people are behind us.

Why now?

This is a really good question. We’ve been doing so well. Bilbo has been doing really well. But the truth is I think i’ve tried to do too much.

I touched on how I was feeling in 90 Days of Cancer.

Self care in theory sounds so easy but it is also so easy to let it go by the wayside. To not put yourself first. And this week has been the perfect storm.

Bilbo has been doing so well. Our lives have become more and more “normal” with the normality we’ve tasted our old life. I’ve been thriving, getting back into the driving seat at work. There is so much happening, so much change, so many things to be excited about.

But then this week has hit me like a tonne of bricks and I’ve come to the realisation I can’t have it all… I can’t do it all. And i’ve done myself in trying. And i’m left broken and exhausted as a result.

How’s Bilbo doing?

Bilbo hasn’t been great this week. His last chemo was on Wednesday and up to now we’ve been killing it. He’s maintained an appetite he’s felt good, he’s been full of energy.

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We’ve enforced rest days this week to try and give Bilbo a chance to recover. He hasn’t been his usual bubbly self.

But the signs the tide was turning begun to show last week when we had to enforce a rest day and he missed school on Friday. His appetite has reduced and food tasting strange has become a constant.

We’ve reduced his anti-sickness on advice from his doctor but i’ve ramped it up again. The trouble with chemo is you never really know. Last time he was super sick and nauseous throughout and this time we managed to control it with the meds. We thought we were out of the woods, but then this last round of chemo hasn’t made him feel so good.

His bloods on Wednesday also confirmed he needed another blood transfusion. By Thursday he looked exhausted and he was quite flushed. Between Thurs and Saturday we’ve taken his temperature at least 40 times.

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Blood Transfusion Thursday – Bilbo takes it in his stride, bloods is a good excuse for a box of Lego!

He’s been teetering just under the 38 mark. Despite not reaching 38 and being reassured by Ward 4 at Milton Keynes hospital to keep him home. He just hasn’t been himself.

And so since Thursday he’s slept in with me so I can keep a closer eye on him and because a big part of what he’s needed these last few days is reassurance and a lot of cuddles.

And i’m not sure who needs the cuddles more…Bilbo or mummy!

Mummy Guilt

And so to top the week off with a big fat cherry on the top. I’ve got a side of mummy guilt, because I made the call to work this week and Rich did the treatment shift. There is absolutely no reason why it needed both of us. And there is no fucking reason for me to feel guilty…but of course I DO!!

I wanted to be present this week at work because i’ve earned it. I wanted to be with my team presenting to my new boss. And even that didn’t work out…i’m so run down and this week my body basically said enough!

By Wednesday i’d completely lost my voice. Maren in my team had to take my spot speaking at our team all hands and by Thursday, I could speak but I was certainly doing my best impression of a late night radio DJ.

Where’s my head at?

None of what i’ve shared is pretty significant. Being a tired mum with mummy guilt is nothing special. I could have written that statement a hundred times before Cancer. But the difference is i’m absolutely FUCKING exhausted and it is a whole different type of exhaustion.

It is suffocating, all consuming, I want to climb out of my own head because i’m exhausted of the thoughts that swim around it.

Having a night off now also comes with a huge dollop of cancer guilt. Do I go and try to enjoy a night out in London with a dear friend. What if Bilbo’s temp moves that extra degree from 37 to 38 and i’m in London?

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I’m so glad I made it to London to hangout with this beaut!

We’re also having to constantly think about whether our life choices are the right choices. We know some parents don’t leave the house. They have their kids in a bubble. And it is totally understandable.

But that isn’t who we are. We can’t stay home for a day without wanting to climb the walls. Do we keep Bilbo in and then only take H out? He’s got energy he is a 5 year old he gets bored. But what if he ends up sick? Will we live to regret our choice. We have to battle this day in day out about every single decision we make.

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We’ve spent a big chunk of the weekend doing a spring clean of the garden. We’ve created two dinosaur gardens.
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Bilbo placed his first bug in the Godber Bug Hotel today. It was a ladybird we’re hopeful more insects will check us out and give us a good review in the coming weeks.

Cancer is everywhere

I’ve never noticed how many adverts there are on the TV about cancer. I’ve lost count of the times we’ve now muted a story on the news or advert. Bilbo knows what cancer is and we don’t want him to know about the dark side of this awful fucking disease.

And once you’re in the C club you’re living breathing and seeing it all day every day. EVERYWHERE!!!! You’re sensitive to the word, the suffering and you now know what is happening behind the scenes. You can see what is happening behind the smiles, the positivity because that is us.

And wearing that mask all day, every day is exhausting.

We can’t go anywhere or do anything where we can simply forget about cancer, pretend it isn’t happening.

Even when Rich and I managed to have a night out we spent most of the evening talking about the ways we can make the most out of cancer. What plans we can make for the boys, how we can enjoy life to the fullest even with cancer.

Bilbo the Brave

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Bilbo asked to have his stabilisers removed today. I would have been up for trying but when you’re cancer kid needs a platelet transfusion it probably isn’t a good day to try it.

I feel like shaking myself and saying get a grip because Bilbo is taking it all in his stride. And he is so so bloody brave. We throw the word brave around a lot, but the strength he shows daily is simply tremendous.

The torture of watching him be so ill through the first half of consolidation, had me so scared for the second half, I wrote about how worried I was here: Week 10: Here we go again.

And then this week we’ve seen some of that misery. The loss of appetite and yesterday the charade of trying to get him to take his weekend antibiotics. But instead of behaving like a 5 year old, having a tantrum or worse spitting it all out.

Instead he psychs himself up and he takes it, he refuses the offer of doing it two halves. He just asks for a break between his antisickness and the antiobiotics. And I have to watch…as he tries to swallow without gagging. Knowing how fucking hard it must be for him. And after his water he skips off to carry on being Bilbo – the most awesome fucking kid I know.

But in that minute I am just lost, wondering how this is our life and it breaks me. And that is why it is exhausting because you’re heart is breaking in the same moment it is bursting with pride.

Mother of all meltdowns…

Had I have not been ill this week perhaps it wouldn’t have been such a tough week. If Bilbo had felt a little better perhaps I wouldn’t have broken quite so much.

But the truth is 111 days is taking its toll. Knowing that we have are only 8% of the way through or we have 92% of our journey still to go hurts, it hurts so fucking much.

Reading about the children who’ve died – not from cancer but from the side effects of treatment terrifies me. Reading about the relapses scares the crap out of me, hearing about the kids that haven’t made it to remission panics me. And we are having to live with this worry EVERY FUCKING DAY.

And for 111 days i’ve not mentioned these thoughts, i’ve not dared to mention it because I couldn’t but they are there eating away at me and they are most definitely there every night when I can’t sleep.

And they all came pouring out in an instagram post at 1:30am on a Saturday night.

We need a break

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Dreaming of heading back to the White Isle our special place…the countdown begins!!!

The last time we had a proper break was the week before Bilbo started school. We had the most amazing week in Cornwall. That kind of week is what we lived for and have always worked so hard for. Those are the weeks where we switch off and devote every second to being a family. It is how we balance being full time working parents to our boys.

Then things got chaotic I had a trip to New York , 72hrs innovation jam in London and then another trip to the US. 3 days after my return Bilbo was diagnosed and here we are…fucking exhausted and so over cancer!

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Hunting for caves in Cornwall

And so tomorrow is half term…Bilbo is off and over the week Rich and I are taking some time off with him too.

It isn’t Lanzarote for a week, it isn’t Mexico for 10 days but it is going to be some much needed time out and whilst i’m off I am busy planning some breaks for the whole family too.

And we put the thoughts of MRD’s, test results, protocols and trials to the back of our mind. We can’t do anything to make time move faster.

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Our beautiful Wall of Love

Tonight I finished putting the most recent cards up on our Wall of Love and I know, we’ve got this but some days we don’t and that is ok!

One comment on “Day 110: The Mother of All Meltdowns

  1. I’ve been reading your blog for a few weeks now. Bilbo sounds like such an amazing boy- what a shocking, traumatic & just hard thing for you all to be living through. Cancer is shit & I say that from personal experience.but I was 54 when I was diagnosed & not a wonderful innocent child.
    As you say, living in the cancer world & community can be tough. Too many reminders of the reality of the disease. I find that it has its positive sides too. Ive connected with so many amazing people over social media & in person. Again, I know it’s tough but please try not to beat yourself up- you’re doing your very best every day- love yourself & be kind to yourself when you can. I hope you all have a lovely break together. Sending Bilbo love and hugs for his continuing treatment & some for you too.

    PS. I’m liam’s wife & one of Sue Lacey’s very good friends. If you ever feel like it, check out my blog & you’ll see some of her photos. http://www.bloomingcancer.co.uk

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