Day 50: Managing expectations and Winging It

Winging It

We seem to spend a lot of time managing expectations and winging it these days. Or maybe we were always winging it.

Aren’t we all? Isn’t life just one winging it moment after another?

But since D Day (Diagnosis Day) we’ve been winging it in a whole new way and sometimes we’re getting it wrong VERY WRONG and some days I swear I deserve the Oscar equivalent for parenting. (See my disco bath effort below)

Managing Expectations

And the other thing we have to do is manage a lot of expectations, we’re having to navigate a whole new world of saying maybe to a lot of things and learning when it is OK to say no. And of course there is a small person in the middle of this who needs to have his expectations met too.

Last 7 Days

If you follow me on social media or you’ve seen me in the last 7 days you will know this week has been hard. We’ve had crap thrown at us from all directions. Nothing life changing Bilbo hasn’t been ill or new hurdles on his diagnosis. Certainly nothing dramatic. Just living life a family battling cancer and our daily routine has been bloody exhausting and utter shite.

These have helped…

And as I’ve written before there is no rhyme or reason to when you wobble or have “moments” sometimes it isn’t the big things that break you it is the small things. Or multiple things or one ginormous huge thing.

Broken

And this week I couldn’t really tell you what it was that broke me…maybe 50 days of cancer. Maybe I’m tired, maybe it is just the usual December parenting stress of finishing the year on a high, the expectations.All the sugar, the baubles, the santas, the lack of wine. All I know is I cried a lot on Friday and again on Saturday. And I could probably cry right now if I could be arsed.

I’ve cried on my own.  I cried down the phone to our community nurse Jodie on Saturday morning whilst the kids nearly killed each other. There were tears on the phone to my mum. I cried on the sofa whilst Bilbo screamed and shouted. I cried when Bilbo told me he didn’t know how to stop being angry and could I show him. I cried when I found out there was another confirmed case of chicken pox at school. 

I could have cried when I realised Bilbo’s meds were left in the car overnight and we needed to drive to Oxford to get replacements.  I’ve felt like crying every time we’ve needed to figure out what Bilbo can or can’t eat due to sickness. I felt like crying when I had to chase Bilbo round the house to give him his banana medicine this week.

I cried when Stacey won Strictly this week because I think she’s bloody awesome and I missed the winning moment.

Rewind to Thursday

At exactly 12:12am I published Day 44: Pearson, Tears and Dinosaurs at 12:30am I discovered Bilbo was in my bed. I took him back to his room he lasted 25mins. Rich moved to Bilbo’s bed and Bilbo got in with me. At 2:05am he was complaining of earache. By 2:30am I took his temperature again to check there was no change before I could safely give him calpol. And by 3am I popped cotton wool in his ears.

This is what happens with cancer you say something positive, you have a few good days, it is like you’ve jinxed it. Although I have to say within an hour was a new record.

Cytarabine

After a very restless night Bilbo overslept for school – not a problem the nurse was coming at 11am anyway for his 3^rd dose of cytarabine. About 15mins before Vicky arrived I asked Rich where the black bag was…”in the car” he replied. Hmmmmmm I thought the black bag with our entire cancer life has been left in the car – overnight. If you recall I was in London on Wednesday and therefore not in charge of the black bag. I could feel my rage and anxiety levels rising.

After a few calls and much discussion it was advised the two doses of cytarabine couldn’t be used. The chemo drug is supposed to be kept at room temp.

It is also made to order so it isn’t something just knocking about in a drug cupboard. So off we headed on the 100 mile round trip to Oxford for 15mins and the 4^th vile of meds for Friday.

Now if I’d have written this on Friday I would probably raged about how angry I was…and some of you who spoke to me Thurs/Fri would have heard this first hand. But on reflection it is a mistake either of us could have made. Like the anti-sickness on Monday (which was my fault).

We are so new to this – we make mistakes. We’re only human – we make mistakes. 
And so that is why as a family battling cancer we really are winging it.

More Winging It

Whether it is trying to remember everything we need to do, everywhere we need to be or everything we need to take with us – EVERYWHERE!

When it comes to meds we are following the rules, the doses etc. but there are so many areas which aren’t black and white. And so many things we can forget.

We’re winging it every day – managing the ever changing Bilbo moods and appetite. Some days I feel like a total fraud. On Wednesday so many people told me I was so strong and as a family we’re doing such a great job of fighting cancer.

If you’d have seen us on Friday, Saturday or Sunday morning you’d have seen the reality of our world failing apart around us.

Early Starts

Every morning starts with so much promise normally because only one of our small people wakes up and then once they’re both up ALL HELL breaks loose. Fights over who’s in our bed, who is laying on which side, fights over who’s holding my hand down the stairs. Who’s sitting where at the table.What we’re watching on TV, who’s breathing.

Probably doesn’t sound particularly out of the ordinary… You could say it sounds like most households with siblings. But throw into the mix a child who’s come off steroids, is very very angry. And has a hickman line hanging out of his body, with a 2.5 year old who can hold his own and bites – you’re looking a recipe for disaster.

Brotherly Love

We’ve had kicking, screaming (quite literally in each others ears) we’ve had tantrums, shoving, Bilbo has a nice bite on his back.

I’ve had to explain to the consultant today, imagine my delight at “we need to see if it broke the skin as the mouth is the most toxic part of the body” followed by “ah yes that is pretty bad” Yeah you’re not kidding you should have been there.

And it wasn’t only Bilbo who ended up injured H had a fat lip and blood pouring out of his mouth (not Bilbo’s)

SOS

Add to this three days of Bilbo only having one volume LOUD and one mode ANGRY. By Friday evening I was close to losing it, by Saturday morning I was broken. I made an SOS call to my mum. I didn’t know how I could handle a day stuck inside with the two of them (it was raining freezing sleet outside otherwise I would have braved the cold) Thanks MUM!

Saturday Night

But by Saturday evening we were living the dream (although if I could have changed one thing it would not have been right in the middle of the Strictly final) Bilbo wanted to re-enact The Gruffalo from inside their new wagon. We had a deep dark wood midnight story time whilst eating rice cakes.

By Sunday morning normal behaviour had resumed the boys were once again trying to kill each other. We had a deadline to get to a family Christmas meal. And all I felt like doing was throwing in the towel and heading out the door…ON MY OWN!

Instead we split the kids up Bilbo in the shower – OUT OF THE WAY!!

Disco Bath

And to give H a bit of special attention I attempted to make him a Disco bath. So our bathroom now has purple tissue paper taped to the window frame. There is a snowman light perched on top of the toilet cistern and we filled the bubble bath with glow sticks. 

And for 10mins Rich and I were able to dislodge my phone that fell down the back of the bed, pack everything we needed “just in case” for a family dinner in Nottingham and attempt to get some washing done.

Leaving the house is a miracle some days

Getting out of the door requires new negotiation techniques: we try to remain calm and adopt a zen approach (this NEVER works) we shout and scream and run around like headless chickens (this NEVER works either but I feel better) a combination seems to work best. And bribes LOADS of bribes.

Christmas Dinner and Family on Sunday

Christmas dinner with all of our family was fabulous, Four generations of family all spending time together. Bilbo loved it, H loved it and we loved seeing everyone. It was a great reminder that getting out the house however long it takes is worth it. 

I’m just sorry we didn’t we take any pictures…too busy living in the moment and being present.

And so to managing expectations…our Christmas holidays have started early

I am finding it hard that we tell Bilbo one thing then we have to change his plans. Like this week we’ve talked about his Christmas performance tomorrow. We’ve practised the songs. We’ve worked out how we were going to keep him warm on the playground (thick rainbow socks) His first school trip to the theatre to see Julia Donaldson’s Tabby McTat on Thursday.

And after a call from the school about a 3^rd case of chicken pox and a chat with the doctor. Bilbo’s first term of school was brought to an abrupt finish. And we were left with the job of breaking it to him. “No School Bilbo”

This is certainly not the first time he’s missed something and sadly it won’t be the last.

Week 7 Treatment – where are we at?

Bilbo had another lumbar puncture under general anesthetic today. He was amazing in the hospital. He clearly saves all that Bilbo charm and manners for school and nurses.

Week 2 of cytarabine starts tomorrow and happens every day for 4 days.

And after a call to Oxford this evening, Bilbo needs a blood transfusion tomorrow. About 10mins after I opened my big mouth and told him no more hospital until after Christmas – I had to double back and manage his expectations once again. I broke my own record in tempting fate.

For 2018 I need to learn to not make promises I can’t keep.

We’re clearly still learning…still winging it! And we did survive Christmas with Cancer.