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Bilbo's Journey

Day 360: Highs and Lows

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Bilbo smashed his 10m swimming badge – we couldn’t be prouder!

I’m finding that as we edge closer to our cancer anniversary (5 days time) i’m back riding the rollercoaster of highs and lows again.

If I had written this post a few days ago it would have been filled with all the highs we’ve been experiencing over the last couple of weeks. We’ve been feeling good about life, we’ve been getting a taste of normality. But sadly the highs aren’t lasting and the lows are all consuming.

The Highs and Lows

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Catching up and causing trouble with little nanny

A few weeks back Bilbo got his 10m swimming badge. It was his first opportunity to go swimming after his wiggle had healed up and it was heart in mouth emotional. Rosie has been teaching our boys since they were babies.

I cried all the way home. In fact I couldn’t stop crying it was just one of those moments that brings to much of what has been taken away from us flooding back. It was joyous!

Bilbo’s reading is improving every day. He moved up a level and was so proud of himself. And he is loving EVERY day of school, credit to his school and his new teacher.

And we all celebrated Bilbo’s birthday with a treat to Harry Potter Warner Bros studio tour which was magical for all of us.

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Birthday boy, knocking on the Great Hall Door at Hogwarts.
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Riding Hagrid’s motorbike
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Catching a ride on the Knight bus
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Platform 9 and 3/4

Cancer Anniversary

But the lows have hit tonight as I write this i’m not in a good place.

I’m tired, it has been a long busy week. I’ve not seen the kids much as i’ve commuted backwards and forwards to London. There is a lot happening for Rich and I at work, we have a lot of things to co-ordinate and sort out at home. And I know the anniversary is hanging over me/us like a dark cloud.

What that means in reality is I am reliving those days last year before diagnosis. I’m torturing myself with how I handled that time. Knowing I was so cross with Bilbo when we went shopping and all he did was complain. I feel sick to know that he was so poorly and despite it he tried so hard to keep up.

There is disappointment that I ignored the signs, or didn’t take them seriously. I feel guilty that I played roulette with Bilbo’s health. Which quickly turns to anger. It is unhelpful and makes no sense but sadly all part of my current state of mind.

Where are we on treatment?

This week marks our second cycle of maintenance. Bilbo will go through a total of 10 cycles (or thereabouts) and each cycle lasts 12 weeks.

Through each cycle he will have daily chemo, weekly chemo all in tablet form. And then on the second week of each cycle he has a lumbar puncture where he gets chemo into his spine at Oxford under general anaesthetic.

He has a weekly blood test, now done through finger pricks and more often than not this happens at school. And monthly chemo clinics with our beloved Dr Aye.

Frustratingly he is still having to take two types of anti sickness every day. We had hoped the move from the liquid 6MP (daily chemo) to the tablet form would ease the nausea, no such luck. And this is adding to how angry i’m often feeling about cancer.

Bilbo has been a superstar, he takes it all in his stride. He’s transition from liquid to tablets has been seamless and he pops the pills with ease. And the bonus is we can ditch the yukky banana medicine (weekend antibiotics) in favour of a tablet form now too.

How’s Bilbo Doing?

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Blowing bubbles in memory of Henry. 20th October was his 6th anniversary of growing his wings and this year has brought home what losing a child to cancer really means. Thank you Dawn for having the strength to keep Henry’s memory alive and making such a difference to SO many families through his legacy.
https://godberstravel.com/2019/09/12/the-henry-allen-trust/

On the whole I think Bilbo is doing amazing.

He’s clocking up some awesome achievements in and out of school. We’ve been filling our weekends with exciting treats (Bilbo’s birthday) and rinsing the last few days out of our Merlin passes.

But this week has been a stark reminder of how we have highs and lows. How cancer is very much a part of our daily lives and I think Bilbo is showing signs he’s thoroughly fed up, as are we.

Firstly our monthly clinic appointment was testing. We’ve been doing so well, Bilbo has finger prick tests at school and since i’m not there I think he does pretty well. He’s very matter a fact about it.

But on Tuesday he wasn’t playing ball. His finger wasn’t bleeding, he didn’t want the nurses to try another finger, he started to cry. He begged us not to do anymore. But getting his blood is an appointment part of our weekly routine. My heart broke for him and we were back to bribing and thinking of ways to get him through it.

Taking Us Right Back

childhood cancer awareness month
Throw back to that first week in hospital: Ickle Tickle with nanny to wind down for bed time, little did we know it would be another 3 hrs before he actually rested.

It took me straight back to those early days. When we’d visit the clinic for injections and he’d cry so much. No parent wants to see their child in pain and whilst the finger prick tests aren’t all that painful. His cry of “no” “I don’t want to i’ve had enough” is deeper rooted than what it appears on the surface.

And then tonight…he’s tired. Like most 6 year olds about to start half term, he’s worn out. He’s ready to recharge. He’s been sick this week too. He was sick multiple times on Wednesday night. But when Bilbo’s tired I think his resolve and patience for all things cancer diminishes.

And for the first time in weeks he didn’t want to take his medicine.

As we nudged him and encouraged him his response “I don’t want to, [insert name of friend at school] doesn’t have to so why should I” and there you have it. The boy speaks the truth unfortunately the only answer is ” [insert name of friend at school] doesn’t have leukaemia, so you need to take it”

And then bedtime became quite the trauma. Mummy got the brunt of it, he’s an angry little boy and i’m his punchbag. And it hurts, it hurts so bad.

And how am I doing?

#mentalhealthawareness, #worldmentalhealthday, #mentalhealth
I posted this on Mental Health Awareness Day 2 weeks ago:
“Today I’m smiling but this year has been the toughest of my life and the first time I’ve truly understood what it has meant to suffer with mental health. I’ve been in some dark places, I’ve suffered anxiety, panic attacks and the most debilitating part of has been the fog, it has twisted its way around me, intruded into my daily life and made everything a little harder, a little darker and has taken me to places I hope I never have to revisit! BUT I survived – I did so because of the support network I have. Because of the people in my life who care and get it! I’m also blessed with the most unbelievably compassionate husband, partner and father to my children! I truly couldn’t have made it through the last 12 months without him! People talk about being blessed I am! My friends and family also know I’m strong, I’m tough, I’m a warrior! Most of the time I am – but I’m able to be all of this because one man is behind me, every single step of the way. When I’m lost he’s there, when I’m falling apart he’s there! I’m grateful every single day for his existence, his love and his support!”

If from what i’ve written you haven’t figure it out, I’m a mess.

I should be getting an oscar for the performance i’m currently putting on. The brave face the world is seeing is not how I feel inside. And it is exhausting.

It is exhausting telling everyone i’m OK. I’m fine, biting my lip and nodding, smiling, doing crazy dancing is all part of maintaining the charade.

These are all tactics to keep me from falling apart. I can’t say anything other than “i’m fine” “Bilbo’s doing great” because i’m terrified if I stop. What if I open up, if I stop pretending and the truth comes out? the tears, the fears will flow and i’m not sure I will know how to make them stop.

Mask Slipped

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Couldn’t do this without my mum!

I let the mask slip a little last week on the long car journey back from Chessington with my mum and Rich.

I shared some of what is going on in my bonkers brain. My anxiety, the worries I have, the way my mind is currently working. When I say it out loud my head knows it makes no sense and I want to tell myself to snap out of it. But I can’t make it stop. I feel crazy!

I’m talking regularly to another cancer mum about my anxiety and mental health. She understands and gets that i’m terrified of going to get counselling because i’m not sure right now if I could deal with the pandora’s box it will open.

And I’m grateful for my team who picked me up on Monday when I my mask fell crashing to the floor and I shared some of my darkest fears and my tears did flow. Ladies thank you!

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Catching up with my team in London. Team Goals!

Consumed By Cancer

I’ve shared before about how being in the cancer family exposes you to so much more misery, pain and suffering. It is what drives the highs and lows. This is probably an unhelpful part of what makes me so low. It isn’t just Bilbo who has suffered, there are just so many children suffering. And in my head i’m grateful that Bilbo is getting some level of normality. But then I have guilt, guilt for complaining when I know we have it easier than most.

I am then frustrated that I can’t pull myself together, pull myself out of this slump. But then I am angry that my darling boy has to be pumped full of poison and then a cocktail of anti-sickness because the bastard chemo makes him feel so horrid.

I’m angry that it has been 360 days and we still have 874 days to go. And to be quite frank the days mean fuck all. We are going to be worrying about cancer and Bilbo for the rest of our/his life. Why? because he’s always going to be a relapse risk and we now know how absolutely shit it is and I live in fear that it will strike twice…

Highs and Lows

As I look forward i’m looking for more highs and less lows.

Next week it is Bilbo’s 1 year anniversary, it is half term and it is Halloween. Im hoping we can celebrate Bilbo’s favourite holiday by being normal. Dressing up as zombies and trick or treating with his friends.

But his second lumbar puncture is fast approaching and this is worrying me…my moods are driving Rich up the wall and i’m not being the mummy I want to be.

Writing this all down has bee cathartic, maybe I should do it more frequently again as I know I couldn’t have got through the last year without writing my thoughts here.

But admitting you’re not thriving, that things aren’t good isn’t easy. Mental health stigma is a thing so I want to try and break through the taboo. The truth is we’re all vulnerable.

I was quite open on Mental Health Awareness day a few weeks back and i’m committed to continue to being honest about the highs and lows.

But please don’t be afraid to talk to me, don’t be afraid to ask if i’m OK? I know i’ve got this because I have amazing people in my corner.

Bilbo is raising money for:

The Henry Allen Trust: Donate Now

Since you’re here, hopefully you will find some of our other posts useful and will consider sharing them through Childhood Cancer Awareness Month:

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