After denial, comes anger AGAIN…

4 days at home

We’ve been able to enjoy Friday, Saturday, Sunday and Monday at home no hospitals. I say enjoy, we’ve been on a roller coaster with our emotions. As we enter week three, i’ve moved from being really practical and pragmatic about the diganosis, to utter heartbreak last week, to a super cranky horror this week.

I’m really struggling…being negative, feeling down is not who I am. I’m someone who takes on the world, I see a problem and I immediately think about a solution. These last few days I feel paralysed to be able to get myself out of the slump.

I want to scream and shout, i’m grumpy, snappy and annoyed all the time.

Week Three

Week three means things are feeling very,very real, as I write this I know that tomorrow we start back at Milton Keynes. Followed by another early visit to Oxford on Wednesday, repeat on Thursday and maybe again on Friday. I feel like i’m in groundhog day.

Not going on holiday at Christmas has made me angry, i’m angry that we can’t book another holiday right now. I don’t know if we can do any of the things we have planned for the holiday season. Because we don’t know anything…

We’re incredibly confused

We came home from hospital last Thursday prepared for the worst, we had waterproof sheets on the bed, a sick bowl. I slept with Bilbo in case he needed me…he didn’t. We waited on Friday to see what would happen, he seemed normal.

Saturday was a similar story, Rich took Bilbo for a walk along the canal, he walked a long way, no assistance needed. He’s very hypo and super hungry all the time.

Support

I’ve joined some facebook support groups, I want to know how he should be reacting? is this normal? when will he start being “sick?” when will he lose his hair? should we be going out as much as we are? am I going to push him too hard so he does get “sick” which I could have avoided? How do we bath him with a wiggle.

None of my questions can actually be answered by a forum or a medical professional exactly, because i’m quickly learning EVERYONE is different.

Some children start losing their hair after 2/3 treatments (we’ve had X2 of two types of chemo and X1 of another) others 5 months in, 9 months in some never fully lost it. Some children are so poorly when they’re diagnosed they spend weeks in hospital, others have had similar experiences to us. Some children had boundless energy because of the steroids and extra calories. They crashed after week 3 or 4, 5, 6 or never. We just don’t know what Bilbo’s path will look like.

Anger is boiling

So my anger started to simmer and now it is boiling. I’m so hacked off with not knowing what to do for the best. I am SO SICK of these four walls. In fact so sick of the four walls i’ve changed a light in my living room, i’ve had a new whiteboard put up in the kitchen. I have plans to decorate our kitchen and big plans for the rest of the house. I’ve bought new cushions for the living room, i’ve bought new bed sheets. I’m seeing things that i’ve never noticed about our house and our space that are winding me up daily.

MISSING WORK

I miss the relationships and conversations I have every day and I miss my friends. I’m lucky enough to love what I do and the people I work with. Having such a strong connection to what you do every day is so important to me and not being a part of it for over 2 weeks is taking its toll on my mental well being. Work is a big part of who I am. I’ve missed speaking at a conference this week and it hurts.

Bilbo’s Behaviour

The steroids have changed our little boy in multiple ways. Rich and I are basically Bilbo’s personal chefs. From 6am when he wakes until he goes to bed he is HUNGARY. Today shopping he was hungry after 45mins. He can eat 6-8 small meals a day at the moment. He’s mostly interested in savoury food. He’s still loving eggs, stuff with cheese, he enjoyed putting his finger in the marmite like jam today.

His energy is mostly positive, we can handle it by taking walks.

What is hard, is he has a short attention span, things he’d happily do for hours like making Dino land, or playing with his much loved lego just doesn’t work now. And then he can also be mean. He can kick out, or punch you. He can say mean things. I know it isn’t him, I know it isn’t our Bilbo it is cancer Bilbo. Nevertheless it sucks, it hurts and it is a constant reminder that this is our shitty cancer path.

What is keeping us sane?

SOOOOO many things are keeping us sane. We are loving the messages that have continued to arrive for Bilbo’s wall of love. A couple of examples below that have really made us smile.

Seeing Harrison smiling again, the introduction of the kitchen to our living room was a stroke of genius ( Rich and Mum – thank you)

The donations that have been rolling in for Bilbo’s GoFundMe. We are up to a whooping £2345 THANK YOU to everyone who has donated or shared our campaign.

We’ve had so many messages about giving blood. Drives are happening in multiple locations and people have booked well into the new year to give some of the much needed red stuff. Special mention to my childhood friend “Big” Kim…

Bilbo’s Grandma is currently in Tenerife with his Great Aunt. They were already walking for Sheffield Children’s Hospital but they are now also raising funds for Bilbo’s GoFundMe.

My colleague Amanda is running a bake sale with colleagues in the Pearson London office.

Rich – whilst I lose it he is my rock. Constantly seeing the upside and reassuring me.

Rich’s work colleagues who’ve raised a huge sum of money for us.

And all of our wonderful friends and family, we’ve continued to see so much love and kindness sent our way. Your generosity has been immense from flowers (thank you Jive/Aurea, Bradley family and Eve). And vouchers that will save us at the hospital, with our food shopping and much needed treats.

I am not going to apologise for being angry as I know it is all part of the process, it is part of dealing with this shitty cancer. and having got it all out I almost feel a little bit better.

If you got this far thanks for listening…I needed that!

via GIPHY