Day 53: FOMO – Fear of Missing Out

FOMO = Fear Of Missing Out

I’ve always suffered from FOMO. It is probably the reason why i’m often the last person standing on a night out. I don’t sleep very much. Lucky for me I don’t need a lot of sleep. I hate the idea of missing out on ANYTHING!

As a child I was lucky to have a healthy childhood, I don’t remember missing a lot of school. However I did miss two school trips. Not because I was poorly but because as a child I was a handful and my parents had a habit of following through on discipline. Being “grounded” when my whole class went potholing in the lakes, meant I missed the trip.

Now days parents of kids who show signs of being “spirited” are told “they’ll make great future leaders”. At the ripe old age of 38 I realise what my parents were doing was character building. But at the time I was devastated.

With this in mind knowing Bilbo is missing school, missing experiences and it gives me a heart wrenching “FOMO” on his behalf.

Last Week of Term

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Even though Bilbo has missed the last week of school, H has been at nursery. He’s met Santa and was even brave enough to have his picture taken.

And this week it has been harder than any of the weeks before. The last week of term – most families would be thinking it is no big deal, they don’t learn anything anyway. It is all Christmas jumpers, parties and play time.

Yes it is and that is exactly why I wanted Bilbo to be there. Because as a child they are some of my earliest memories. Being able to bring a board game in on the last day of term to play with my friends.

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Thank you to Tippy Toes for raising funds for The Henry Allen Trust and Aiden’s Funds for Fun during their Christmas Jumper day. H looks so grown up here. Sometimes it is easy to forget there are two little people affected by the big C in this house.

Enjoying the Christmas party, watching films on VHS through the tiny TV screen our teacher would wheel in.

No school for Bilbo

Whilst at the hospital on Monday we got a call from Bilbo’s school. Another case of chicken pox. After a chat with his doctor, we all agreed school was just to risky.

On Monday Bilbo was 10 days post some pretty strong chemo. By mid last week his bloods had shown signs of everything being low. It is the worst time for Bilbo to be vulnerable to germs. It was a no brainer, but nevertheless a really tough call to make.

We also got the call from Oxford that Bilbo needed another blood transfusion. Tuesday was another right off anyway waiting around for blood and then a 4hrs blood transfusion.

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The Lego gift to MK hospital was a life saver. When Bilbo is in hospital he has to go in a side room and is not allowed to go to the playroom or play area. The hospital is full of very sick little people and Bilbo needs to avoid getting bugs whilst on the ward. Visiting MK is very different to the Kamran ward in Oxford where he can wander about and even have his treatments and meds in the playroom.
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On Tuesday in Milton Keynes hospital the MK Dons came in to visit the children’s ward. They were really lovely and took time to chat to Bilbo whilst he had his blood transfusion.
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Even when he’s fed up and wants to go home he’s still smiling.

If you have given blood THANK YOU!!! We will continue to need it throughout Bilbo’s treatment. Giving blood is the best thing you can do to help us and others. Don’t forget to share your story and use #donate4bilbo

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This stuff is so valuable, without donors Bilbo would not be able to get better. THANK YOU!

School Performance

Bilbo missed his school performance on Tuesday evening – it was rained off and i’m ashamed to admit a part of me was glad. How awful is that? I feel like a horrible person for feeling like that.

I’ve felt like staying off of all social media – so I don’t have to see the “precious moments” we’re missing out on. Moments we have missed this year and will continue to miss for some time to come.

Surprise Disco and Santa

He missed a surprise disco for his class on Wednesday. His class took in party clothes and met Santa. Rich pointed out that Bilbo has met Santa three times this season. This is true, but I would trade them all in for the one with his class, because that would have meant he wasn’t sick, he was being normal.

Theatre Trip

On Thursday he missed his first school trip to the theatre. **Side note we had tickets to the same show before he even started school so we aren’t missing Tabby McTat**

BUT it was the experience of getting on the school bus with his friends, the first school trip is a right of passage and cancer is robbing Bilbo of that.

Lanzarote

And the cherry on the cake…instead of writing this blog I should be packing for our holiday. The plan was to escape the winter and get a week of sunshine and fresh air.

We’ve been to Lanzarote before and it is just the most wonderful place for families. The beaches are clean, the paths are flat and we’d booked a hotel with the biggest kids swimming pool. We were planning a trip to the volcano Timanfaya and maybe a boat ride to Fuerteventura.

A different kind of Christmas

We were looking forward to escaping the commercialism of Christmas and spending quality time together as a family. Santa was going to make a small drop off and the rest of the holidays was going to be about being together and experiences.

We didn’t want the pressure of creating the perfect Christmas. I’ve stressed about this for multiple years and last year we put an end to it by going away. Christmas holidays overseas was our new thing and I was looking forward to escaping.

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Christmas 2017. What is more fun than digging a hole on a beach at sunset. Chilling out on Bophut Beach
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Selfie on the beach, Koh Samui, Thailand, Christmas 2017

Pity Party

This might sound like the biggest pity party, it isn’t meant to. But I can’t help feeling a little robbed, a little short changed.

And I can tell you what isn’t helpful, telling me: I should be glad I still have my son. What kind of response is that? Of course I’d gladly never have another holiday in my life if it meant Bilbo wasn’t sick and we could guarantee his health. BUT life doesn’t work like that.You don’t get to trade off one for the other.

Daily we have to explain to Bilbo why we’re not going on holiday anymore. And we have to do this in a way that doesn’t blame it on the cancer as that may make him feel it is in someway his fault. We mustn’t over promise alternatives either because we can’t guarantee them. AND IT SUCKS!!!

Why does it suck? because all year long Rich and I have worked incredibly hard. We work our asses off working full time, we’ve both travelled and made family sacrifices.

Over the last 5 years we’ve both suffered from parent guilt for working, working long hours, putting the kids in nursery, juggling work and sick kids, juggling travel and kids and commitments. But we’ve always used travel as the trade off and just about managed to make it work.

Godberstravel no more

Enjoying the water from all the rain.

A big part of how we’ve made it work is to make sure that we have great travel experiences. From the moment the out of office is on we are 100% focused on the kids, no work email, no calls just family time filled with mini discos, swimming pools, beaches, walks, discovery and adventure.

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Godber Boys Swimming in Ibiza

I meticulously plan every trip to be full of experiences and opportunity for the boys to spend as much time with us as possible. We use our travel as learning opportunities, to encourage inquisitive minds.

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Godberstravel.com

Our home is full of maps, books about travel, we talk to the boys about places we’ve been, places we want to go. Rich and I talk endlessly about ways we can make the most of our holiday. I calculate ways to use bank holidays to maximise the days we can take.

After our 10th time on the ride I think we got the almost perfect photo

And I started writing this blog. Godberstravel.com was a travel blog long before it was a cancer blog. So I should be forgiven for being a bit pissed that travel is no longer the biggest part of our life planning.

So I will wallow and I will be annoyed at not getting on that plane tomorrow. But please do me a favour, let me moan and groan, indulge me. And don’t tell me i’m lucky…because I don’t want to hear it.

How’s Bilbo?

We can’t put an out of office on for cancer. We’re on tenterhooks as to whether Bilbo will get a temperature in the next few days. And we end up spending Christmas in the hospital.

If Bilbo’s temp goes above 38 we are immediately admitted for 2 days of IV (intravenous drip) antibiotics.

We are juggling the anti-sickness meds for Bilbo. Yesterday was a good day no sickness. But we weren’t so lucky on Tuesday and Rich ended up the worst off. THANK YOU to the lady who gave me her packet of wet wipes in the middle of the shopping centre. I will be forever grateful.

“It tastes strange”

Nothing tastes good for Bilbo. He’s trying lots but his common response is “it tastes strange” As I understand it from adults who’ve had various chemo, it can leave your taste buds in ruins. From a metallic taste to things tasting well “strange”.

I can somewhat relate as I know when I was pregnant certain tastes and smells – made me feel instantly sick. And with H I threw up multiple times a day in the first 15 weeks. It was torture.

What is Bilbo eating?

Right now…Ritz crackers. This morning he had a few spoonfuls of porridge. Yesterday he managed a few bits of cucumber and a some bites of Pizza. He was into M&S spaghetti carbonara – then it tasted strange. He was loving crumpets with marmite, now that is a no. Raspberry flavour rice cakes are still OK.

There are certain foods he doesn’t like the smell of too, so we are also having to be mindful of what we eat.

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Thanks to my dad for braving a day out with Bilbo. I was as nervous as hell as I know the last two times we’ve been out this week Bilbo has been sick. But with some careful planning and his meds he managed a fun day out with Grandad.
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Grandad Selfie
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We’ve got a new wagon to help us keep mobile outdoors with two small people. Bilbo and Grandad took it for a spin yesterday for the first time.

What next?

The Cytarabine finished today. Bilbo has 8 doses of this, the last six were from home – thanks to our lovely community nurses. Our Christmas Eve appointment has been moved to the 27th, unless we get unlucky with germs we hope to be no where near the hospital.

And on Sunday Bilbo finishes the 6-MP for a bit of a break. I’m hoping the lack of chemo will allow him to enjoy some normality over Christmas.

On the 27th Bilbo will have two types of chemo one through his wiggle and another by injection. We know this isn’t going to be pleasant the injection isn’t nice he’s had it before and I wrote about it here.

On New Years Eve we have our second MRD, this will happen in Oxford and Bilbo will need to go under general anesthetic. More chemo on the 4th January whilst we wait again for the results.

For now we’re going to do what the Godber’s do best. Have fun and make the best of the situation. Starting with tomorrow picking up Uncle Gavin from the airport. To quote Bilbo:

“is it night time yet I just want it to be time to get Uncle Gavin”

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Thank you to the folk from Fatboys Charity who donated the lego.
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Bilbo was so grateful to receive this Lego this week. And so were we. We were starting to run out of ways we could make him feel better about missing his friends and fun at school.

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