Day 162: Cancer Fog

It has been 21 days since I last wrote a blog. I think it is the longest i’ve gone in 162 days. What does that tell you? We’re busy? Bilbo is doing really well? I haven’t had the time? I’m not in the mood to write about cancer? I’m wading through cancer fog?

The truth is all of the above…

I also seem to be in a bit of a cancer fog. For the last 21 days we’ve been living a pretty boring and uneventful life (and loving it) if you don’t count the 3 days I spent in London having my mind blown at a conference and marching with The Guilty Feminists. But cancer is still there lingering like a winter cold you can’t shift, a bad smell or well erm CANCER!

#donate4bilbo, bilbosjourney, childhoodcancer, godberstravel, leukaemia, leukemia, The Guilty Feminist, Brexit, People's Vote March
We took Bilbo and Harrison to the march in October and Bilbo was pretty poorly. This time with over a million people I went on my own. I wasn’t alone though as I found my tribe. If you haven’t listened to The Guilty Feminist yet I urge you to it is awesome and so were the ladies (and gentleman) I met who were marching with them. (I’ve got the sunnies and red checked top on the left handside right of the lamppost)
Check out their podcast: Guilty Feminist
Or twitter: Guilty Feminist Twitter

Writing posts about cancer messes with that illusion, it reminds me that we aren’t a “normal” family. And in truth I’ve avoided it. I took the selfish, well earned right to take off from parenting for most of last week to attend a team meeting with 130+ colleagues from across the function I work with. And whilst I was there I wasn’t the cancer mum, I wasn’t the dispenser of medicine I was ME and it felt great.

Time Out

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Just a small part of the Dream Team I belong to!

If you’ve been reading this blog for a while you will know exactly how important my work colleagues are to me. How important my career at Pearson is to me. I love the company I work for, I love what we stand for and I love how Pearson is moving forward.

Sometimes I probably sound like a bit of a Pearson fan girl but I don’t actually care because the truth is I am. And i’ve always had the view if you do something you love it doesn’t feel like work. Don’t get me wrong I work hard and it is hard work sometimes but I truly LOVE it.

And so last week was important, it was about catching up with work colleagues and friends from all corners of the globe and resetting (in more ways than one), getting energised for the coming year and for me personally, a well needed escape.

Thank you to Rich, my mum and Grandma and Grandad for giving me that much needed space.

Ground Hog

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Both boys enjoyed meeting the cutest puppy at the weekend with Nanny and Auntie Caroline.

So why the cancer fog? Hitting the 6 month milestone recently really brought home how far we’ve come. My mum and I were reflecting yesterday on how tough those first few days, weeks, months were. They were hell and I NEVER want to go back there.

162 days in we may have the “new normal” but it is no less exhausting. But it does feel like ground hog day on repeat.

Just getting to go to that conference last week took planning, high emotions and I paid a price. There were tears at midnight the night before as I questioned if I was doing the right thing.

Bilbo asked me not to go on the Tuesday morning and was really missing me by Thursday. In fact when I got home after midnight he was asleep in my bed and Rich was on the bottom bunk. The sleepy cuddle he offered up when I got into bed was exactly what I needed.

And the first thing he said when he woke up the next day… “we’ve got pigs” lucky for me we haven’t got them his school has. And he’s very excited.

Plan, plan and more planning

Everything we do still has to be planned with precision and we can’t afford to get complacent. Leaving for 3 days was hard. Here are some examples of what normal looks like for us:

  • We never leave the house without a special bag for Bilbo
  • Despite having a nearly 3 year old and 5 year old we take a double pushchair everywhere or the trailer
  • Germs are a constant worry, I could have shares in antibacterial wipes, spray, hand gel/sanitizer
  • Bilbo needs constant medication, whether it is anti-sickness, chemo and weekend antibiotics there are no days off and leaving his medication to someone other than me is stressful.
  • We have to be close to a hopsital AND if we choose to leave the MK/Oxford area we need to pre-warn the local hospital we’re in their area in case Bilbo gets sick. Since October the furtherst we’ve been from home is Nottingham
  • We try our best to plan things ahead BUT it is almost impossible as protocol dates shift depending on treatment breaks and side effects are unpredictable
  • We are CONSTANTLY torn between trying to be normal and not pushing Bilbo to far, although generally on this front he definitely leads and we follow.
#donate4bilbo, bilbosjourney, childhoodcancer, godberstravel, leukaemia, leukemia,
This is what cancer looks like in a bag…it comes everywhere with us. It includes an emergency kit for Bilbo’s hickman line, antibacterial wipes, foam and sterile wipes. Manuka honey for when he gets sores, antisickness, a spare bung for is hickman line, caps for his line, and spare dressings.

This blog post wasn’t meant to be a pity party. I am however trying to convey that whilst we might appear to be relatively normal from the outside our life is by no means normal and won’t be until past March 2022.

Cancer Club

I explained this to a few people last week when they asked how Bilbo was doing and how I was doing.

#donate4bilbo, bilbosjourney, childhoodcancer, godberstravel, leukaemia, leukemia, lego, lego fan, bath time
The obsession with Lego has now moved to the bath. They take any of the water related lego pieces!

I explain it like this… when you join the cancer club families suddenly fall into three buckets. There are “normal” families this was us before the 29th October. And then within the cancer club there are families who have cancer but they’re getting through it relatively unscathed, smashing milestones and getting by. And then there are families who are having every curf ball, challenge, complication sent their way. We are getting through – we’re one of the lucky ones.

If you’re not in the club, cancer terrifies you – period. Well it terrifies those of us in the club too but we have no choice but to deal with it. And if you are in the club and are like us, you actually class yourself as lucky because you see the families who are dealing with very sick children daily. You see the worry and exhaustion written across the parents faces and it is heartbreaking.

Cancer Fog

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Visit to Robotazia with Nanny. This exhibition has been so much fun to enjoy (we’ve been back so many times) Bilbo is off to do an egg hunt there tomorrow.

And so cancer fog is when you can’t switch the big C off. It is knowing it is part of your every being. It drives every decision you make, it is the first thing you think about in the morning and the last thing at night. And the pain, the shock, the utter dispair you felt at the begining is replaced by cancer fog.

Sometimes it is almost like a light mist and other days it is more like a smog suffocating you and stopping you from being able to breath.

How’s Bilbo Doing?

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Snoozing on the drive home from Oxford, the only naps Bilbo ever takes is when he’s in the car!

We are week 4 of 8 for Interim Maintence. He has had three doses of the methotrexate. Each time the dose has been increased a little to reach the point where he can’t tolerate it anymore. And if Bilbo’s bloods continue to recover each time we will complete dose four next week and then five 10 days after that.

For a few days immediatley after the methotrexate he loses appetite. Mostly due to everything tasting a bit weird. Over the weekend Bilbo was eating really well but yesterday things changed after Monday’s dose and we’re back to nibbles of things that are mostly beige and disappointment when things taste strange.

We’re kind of used to this now, I don’t stress as much as I did. I know “this to shall pass” and Bilbo’s weight seems to just about recover enough to get us through the next phase when he doesn’t eat.

We have a lot of antisickness and we’re ready to up our antisickness game if he needs it. We’re determined to keep as many of the side effects at bay.

He is getting tired more easily. Enforced rest comes in the form of YouTube and his Jurassic Park game on the iPad. Not ideal but very necessary. After full days at school he is done in.

He also has huge bursts of energy which are fun BUT then he crashes. And when the crash comes it is emotional. We are prepared for this now by the enforced rest of the pushchair/trailer. But containing the mood swings and his emotion can be challenging, it isn’t often but when it happens you realise he is just a 5 year old dealing with a lot of bull shit!

Bilbo the Brave

Today we head to MK for his peg injection. This was horrendous last time so we’ve been preparing this morning. In fact I worked out he only has 3 left. Putting some countdowns in for different parts of the treatment and chemo is helping A LOT!

Despite everything I’d say Bilbo is thriving. He has smashed some milestones with his reading, writing and his found a new love of drawing and he’s pretty good. His confidence grows day by day.

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Bilbo is getting really good at drawing here are his stegosaurus

We couldn’t be prouder of him. His energy, positivity and general awesomness is incredible.

Harrison

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Taking his time and chilling…doing potty training the Harrison way.

And not to leave our other little firecracker out. We’ve embarked on potty training this week. So far he’s doing brilliantly, spurred on by wanting to be like his big bro and being able to move to pre-school.

Bilbo enjoyed his stay and play yesterday at nursery. Tippy Toes is such a beautiful setting for children to grow and thrive and Harrison really is. He’s growing so fast and his speech and development seems to be on overdrive. Absolutley facinating to watch, I’m reminded daily why this age is one of my favourite.

Plus that kid is just the cheekiest, happiest little monkey. He’s got a cracking sense of humour now he can talk, it gets him out of a lot of trouble.

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Why settle for one ice cream when you can have two.

Harrison and Bilbo are insperable at the moment, they are so loving and caring of each other. Harrison is lost without “my Bilbo” and their relationship is blossoming. Cancer has a lot to answer for but I cling on to the fact we will be a stronger and closer family as a result.

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Hanging out together playing.
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Ikea is always more fun with a balloon sword and your brother by your side.
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Godber boys band practice

Fog doesn’t last forever, we’re getting closer to that sunshine rising and burning it off so we can see the light again.

#donate4bilbo, bilbosjourney, childhoodcancer, godberstravel, leukaemia, leukemia, cancer fog
I might be a member of the Cancer Club…but I was a member of the Strong Girls Club first and still will be when this is all over!

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1 Response

  1. Karen says:

    Great post, Kim, thanks for sharing. You are doing brilliantly! Knowing how tough it is, I am so glad you have strong support at work and at home. Sending much love.

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