Santa, School, Sausage Casserole and Wet Wipes
There is a sentence I never imagined I’d write… “Santa, School, Sausage Casserole and Wet Wipes”
But they are all connected in some way to the last four days. When you’re battling cancer four days feels like a long time, days can feel like a lifetime. And the last four have been eventful to say the least.
After reflecting on 30 days of Cancer, we started to move into a good place. Looking ahead to a week off of treatments we dared to think we might be able to enjoy some normality. I finished a post i’d wanted to write for a while Ways You Can Support a Family Fighting Cancer.
I felt like we had this cancer thing down. We had a packed weekend planned. Picking out a Christmas tree and not one but two visits to see Santa (didn’t quite think that one through, more on that later).
Bilbo was cleared to go to school on Friday and so sods law dictates that the smallest person in our household would get sick! As we made plans on the drive back from Oxford to celebrate the week off and a speedy hospital visit. We got a phone call from the nursery.
Tippy Toes have been phenomenal supporting us through the last few weeks. And whilst they prepared H’s lunch to go, in case he was feeling better, they offered up a plate of sausage casserole for Bilbo too.
And there started four days of riding the cancer roller coaster. Throwing out the huge highs and the incredibly low, lows.
Before bed on Thursday Bilbo looked at his school photo he touched it, he grinned at my mum and I, he didn’t need to say anything the smile said it all.
Walking Bilbo into school was more nerve wrecking than his first day 12 weeks ago. Once again he didn’t look back, except this time he was grinning even more from ear to ear. We packed him off with a lunchbox. And a brand new age 9/10 uniform. The steroids are reducing but his appetite is still going strong.
As I walked out of the school I had knots in my stomach. The plan was to let him stay as long as he felt comfortable, if he was tired he was to let his teachers know so they could call me.
I kept my phone glued to me all day. No call.
Harrison was feeling better and was able to get his chicken pox vaccination.
The Enormous High
At 3:15pm I parked up counting the minutes down to 3:30pm when the gates open. And I could finally see how his day had been. He was so happy, his smile beamed. The reception from his friends was glorious, it was emotional and I shed a few tears.
The Low Low
Within 10mins of being home, I was on the phone to the oncology team and then Bilbo’s friends mum to cancel his play date. Rich, Bilbo and I set off for hospital. A few traumatic hours later we were allowed home. I won’t go into the details here, but suffice to say Bilbo was and still is suffering from a side effect of one of the many drugs he takes.
The issue had a knock on effect for the rest of the weekend for everyone. F**K You Cancer.
As the rain fell and Bilbo’s issue continued to cause him problems. Getting a Christmas tree was looking less and less likely. Rich and I blitzed the house in preparation for putting decorations up. After lunch we made a call to get the tree, we were all going stir crazy.
Christmas in the movies always feels so magical, there is festive cheer, lights and glasses clinking. Everyone is happy. There is snow on the ground, the mulled wine is flowing.
The reality was nothing like this. We arrived at the farm it was SOOOOO muddy. H hadn’t napped so was being grumpy. Bilbo was struggling to walk. H refused to walk. The trees closest to the car park had run out from last year. The walk to the trees that were ready were further away and up hill. It was raining. We picked our tree, took our instagram worthy picture and headed home.
Sausage Casserole Gate
Bilbo asked for the sausage casserole Kim (the cook at the boys nursery makes) had enjoyed on Thursday. I followed a recipe, figured it would be easy…how wrong was I.
Whilst it cooked I made everyone else dinner. (If there is anything I hate more food wise it is a casserole). As we sat around the table, Bilbo announced, “this is disgusting” and then a big row ensued as we tried to negotiate him eating the bean and sausage casserole.
The thing about dealing with this BS. Is that you can be fine for days, the sleepless nights, the worry, putting on the brave face, putting on the smiley face, being strong for your son who has cancer, being strong for the one who doesn’t. Being there for each other. Answering the questions people have, trying to remember to ask all the right questions for yourself.
And then you break, like a twig and at about 5pm on Saturday afternoon I broke.
And then you break, like a twig and at about 5pm on Saturday afternoon I broke. I charged up the stairs and stood in our bedroom raging. I could hear my heart pounding in my head and had the strongest urge to throw something, punch something, kick something.
But I also didn’t want to add clearing something up to my list of things to do.
So I grabbed a packet of wet wipes and threw them at the blinds. I picked them up and threw them again and again and again. I could hear Harrison coming up the stairs so I stopped. He looked concerned he’d witnessed the drama downstairs, he wanted a cuddle. And like that my mood shifted and I was back to being mummy.
Because that is what you do, you HAVE to dust yourself off and you HAVE to get on with it.
EXHAUSTED we went to bed keeping our fingers crossed Bilbo would be mobile for our Sunday plans.
Leaving the decorations for another day…
Pre-cancer I booked tickets to see Santa. We were then invited to the MK oncology visit to see Santa at Frosts on the same day. We decided to ride the roller coaster and I’m so glad we did.
Two boys went to bed happy and we’ve filled their little heads with happy memories. And we topped our own memory bank up too. The house looks like a bomb site, the Christmas decorations aren’t finished, we’re all exhausted but experiences took priority today!
The only challenge with this plan, is having a very smart 5 year old. Who’s asking a lot of questions about Santa. We also have the Kamran ward Christmas party next week which includes, you’ve guessed it another Santa.
So we’ve weaved a web of lies to help him understand the deal with the big man. So if you see Bilbo, there is one real Santa (at Frosts) he is super busy and only gets to see special people. There are a bunch of “helper” Santa’s and they help share the load.
Elf on the Shelf
We’ve also had to concoct a story for the bloody elf on a shelf. I can’t add that creepy little elf to my list of to do’s. So i’ve told Bilbo that he only visits the kids that Santa needs to keep an eye on (sorry for those of you who have Elf on the Shelf). But then my smart son replies but Harrison is naughty. Erm the kid isn’t wrong – he’s a monkey. So my next lie…”but daddy works in IT so we’re very high tech and that is why we have him watching us” our home security alarm sensor – LOL.
And so Monday rolls around again and as a family we face week 6 with renewed energy. We don’t have Bilbo’s results yet so tomorrow or Weds will give us more of a clue about week 7 and beyond. Bilbo is at school and Harrison is back at nursery. Rich and I are attempting a return to work.
We’ve practiced phonics tonight, we’ve giggled and laughed, our decorations are finished. I’ve managed to work, Rich has managed to work.
And ignoring the fact there is a chicken pox outbreak at school and we need to figure out whether Bilbo needs a course of meds. We’re enjoying a little bit of normality.
Well our new normal anyway…