Day 26: Hair, Christmas Lights, Pirates, and Tears

It  is safe to say that after i’ve written this post I will be heading straight to bed…I would put this off but I can’t. My head is full of the last 48hrs, my eyes hurt from crying and my mind feels foggy. That is why I try not to cry because it is so much more exhausting than putting on the brave face.

Friday

On Friday my amazing work colleagues visited. It was so good to see P, Amanda and Anna. I enjoyed just being, chatting and having a laugh. They came bearing gifts we’re super grateful and thank you to everyone who contributed. Amanda also treated us to AMAZING homemade sausage rolls and yummy biscuits. I’m honestly so grateful for all the support from Pearson colleagues. Every gchat, email, comment on the blog and/or message means so much. I miss everyone terribly.

And I was delighted to be able to celebrate Neo’s 8th birthday. For those not in the know Neo is the community I manage on Jive and Nov 25th is its official 8th birthday. We had candles and everything 🙂 Gutted Dina had the sniffles and couldn’t come but grateful she respected our need to keep the house as germ free as possible.

Bilbo was a hoot. He even took it upon himself to wait on the ladies (no prompt from me) such a gentleman just like his dad.

Speaking of Rich, he didn’t get much time to visit, he was being kept on a strict lego building schedule dictated by Bilbo. They’ve built this…

godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, CLICSargent, giveblood, gofundme, bilbosjourney, our new normal, LEGO

Daddy and Bilbo built this awesome LEGO together.

And I received this wonderful care package all for ME! Thank you Rachel. The hand santiser was particularly well received by my mum and I as our hands are feeling the full effect of industrial levels of antibacterial hand sanitiser.

#dontbuyherflowers, godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, CLICSargent, giveblood, gofundme, bilbosjourney, our new normal,

This was the most wonderful care package. Highly recommend them check out dontbuyherflowers.com

Hair

Hair is literally everywhere…as I write this I can feel it at the back of my throat. It is all over my jumper. I’ve hoovered it off the sofa, Bilbo’s bed. His clothes are covered. Every time he takes his hat off, he takes more hair with it.

I’ve gently asked him if he wants it cut, he has said no, he asks me to blow his face as the hairs are getting in his eyes. He’s also coughing a lot which I think is the hair too. And tonight as I put him to bed he said he wants it cut. So tomorrow we seek out somewhere to get clippers and shave it off. If he wants to.

I am beyond devastated. This has got me harder than any of it. I catch myself staring at his head daily to see where he’s going bald. When we cuddle i’m scared of touching his head in case more comes out. Every time I kiss his head, which is often, I get a mouthful of hair.

And so tonight after I put him to bed I came downstairs and cried my eyes out with Rich. This was the third time i’ve sobbed today. I’m not having a good day.

godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, CLICSargent, giveblood, gofundme, bilbosjourney, our new normal, hats

We now own a variety of hats and of course there was a dinosaur theme.

Christmas Lights

As is our annual tradition we made our way down to the Newport Pagnell lights this afternoon. I’d love to say it was like other years, full of cheer and Christmas spirit. I’d be lying…

godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, CLICSargent, giveblood, gofundme, bilbosjourney, our new normal,

Enjoying the Newport Pagnell Lights.

It started off well, we wandered down to the merry-go-round and the boys enjoyed driving a fire engine. Then it slowly went down hill. Bilbo was hungry, he didn’t want a sausage…then when Rich arrived with chips and sausage, he did. But Harrison didn’t want to share (typical) H threw a wobbly when we gave Bilbo a bit of sausage. By the time we’d got ourselves calmed down and sorted our prime spot to watch the santa procession disappeared as people stood in front of us…so Bilbo missed Santa altogether.

I was starting to wonder what was I thinking coming here, in the freezing cold and the crowds. And then the countdown begun. As the lights lit up the street, I watched Bilbo’s face light up and realised it was worth everything to be there.

It had been a challenge, something as simple as watching the lights is a stark reminder our life is no longer normal. I have every previous year running through my head. How normal we were…

And then I spotted my NCT mummy friend…and the tears came and before I knew it I was stood in the middle of the street bawling my eyes out. Thank you Rich for taking over the pushchair and diverting the kids to the Christmas tree. I am trying really hard daily to be strong, to keep it together, to find ways to put a positive spin on everything. To show Bilbo the right example but some days it is just SO FUCKING HARD.

Today was one of those days…

Pirates

godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, CLICSargent, giveblood, gofundme, bilbosjourney, our new normal, #bemorepirate

Thank you for the wonerful Pirate care package. Every thoughtful item was the perfect tonic for a brutal day.

We received a very special parcel in the post today which also made me laugh and cry. The back story is that i’ve been reading Be More Pirate by Sam Conniff Allende. A few of us have been talking to Sam and we’ve been creating a bit of a pirate movement. So the care package made me laugh and then it made me cry and then when I sobbed into a pillow on my bed, I quickly realised that Bilbo had been there earlier this morning and I got a mouthful of hair which made me want to laugh and cry in equal measure.

Pic Pirate, godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, CLICSargent, giveblood, gofundme, bilbosjourney, our new normal, #bemorepirate

H loved this game, poking the pirate until he jumped.

The most important thing about the care package, it gave us a beautiful hour before bed where we played the pirate game, enjoyed reading the books, we worked together to build the jigsaw and  laughed hysterically as the parrot repeated what we said, including the boys hysterical giggles. So thank you pirate team – you know who you are. It meant so much to be able to end today on a positive experience and in fits of giggles.

Tomorrow is a new day…

However I expect it to be just as emotional. I know that overnight Bilbo will lose more hair. He may or may not want to shave it off tomorrow. And I know that my baby will no longer look the same, his illness will no longer be invisible. And the coming days will mark the turning point on our journey. So a BIG F**K You Cancer!!

 

 

 

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8 Responses

  1. Linda Walker says:

    Huge hugs n kisses

  2. Fathima says:

    Kim, you and the family are such an inspiration! You and Richard seem to ahve boundless energy and strentgh and tackle each day so positively. So sorry about Bilbo’s hair. It will grow back so hopefully in the not too dstant future he will be back to his lovely blonde crop. Great love and strength to all of you, especially lovely Bilbo just has the best beautiful aura around him.

  3. Chamtelle says:

    I can’t imagine how you are all feeling and just how you are doing any of it?! You are so brave, I know you don’t have a choice but still…Just keep going, carry on, you can do this! X x

  4. Justin says:

    The upside of losing his hair is that , once it is all gone, there’ll be more of him to kiss.

  5. Karen Mauldin says:

    Hi Kim,
    Shaving his head may help more than you think. It made a difference when I had chemo just to have it gone instead of falling out everywhere. Bald looks pretty cute…ha
    Bilbo will do way better than anyone else in the family. Our children inspire us to be better adults.
    It is in times like this our lives change forever. (for the better in so many ways) As adults, we will remember to enjoy every minute of the life we have been given & love like crazy.
    Sending you hugs and love.

  6. Imogen says:

    You are amazing Kim. Sending you the biggest hug x Thinkjng of you

  7. Kath says:

    Sending love and hugs to you all. Stay strong 💖💖

  8. Claire says:

    “There is sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief, of deep contrition and of unspeakable love. Washington Irving
    I cried with you, and for you, reading this Kim. I knew somewhere I’d read that tears are not showing we are weak. Hope the quote above resonates with you too. As you said it’s easier not to cry and avoid it because it’s so darn exhausting but it’s a brave thing to do as well because it helps you find your next bit of strength. Kia kaha ( stay strong) from the Kiwis who love you guys dearly xxx

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