Maintenance Phase – December 2016
We’ve had stints in hospital over the past few months, treatment is ongoing and George is doing really well at the moment. Parents evening confirmed he’s shining as brightly as everyone else. By the sounds of things, receiving daily chemotherapy doesn’t seem to be affecting school life for him too much other than his low immunity.
George goes into theatre under general anaestethic next week for spinal chemotherapy to be administered via lumbar puncture. We were lucky in that the doctor allowed us to adjust his schedule to bring the procedure forward, otherwise he was booked in for this on December 28th…
Here’s a dull fact for you. Since my remotely-stable adult life began, I’ve collected Christmas decorations from nice places I’ve visited. I’ve got the baubles for the years the kids were born plus festive ornaments from various holidays and special places we’ve been. I like to decorate the tree with the kids and tell them the stories behind each one.
Bear in mind I have the three children, and we all know how kids like a homemade decoration! be it a creepy looking Santa or Rudolph the red nosed turd with sticks in, it wouldn’t be Christmas without some indistinguishable handmade creations coming home from school.
Over the years, in a tangle of Christmas lights, I’ve told the deep and meaningful stories behind our mismatched decs, and cooed over the cute homemade creepy angels. Then discreetly shoved them deep into the Christmas tree out of sight so not to clash with Christmas colour scheme. Ho ho ho!
The Shitmas Tree
Well this year, as we all know, is a very different Christmas for our family. This year we had a sharp reminder how we should be embracing every dam minute with our children, and proudly displaying every ugly decoration they’ve lovingly created. I’ve bought a little tree that sits in the window, proudly dressed in all the decorations the kids have ever made and all the baubles I’ve collected from our travels… the unique little tree tells a story in itself. This year we have our Shitmas tree!
Now I’m not saying the tree or it’s decs are shite. The collective noun for lots of random things where I come from is ‘shit’. “Get your shit together” “pick all that shit up off the floor”… and so our Shitmas tree has been born.
The L word
Life has thrown some huge challenges at us this year, it began unfolding last Christmas with George falling ill and subsequently being diagnosed with Leukaemia. Followers of my blog from back in the beginning will have witnessed what a roller coaster it has been.
Like many people who receive a cancer diagnosis, battling through can be a huge awakening for many. It’s understandable what a change the diagnosis makes to your outlook on life, at the end of the day, it feels like a second chance has been given. Certainly for us with a childhood cancer diagnosis, our perspective has been completely altered – we know what real fear is and anything else just seems like nothing to really get in a tizz about.
I have come to realise that without life challenges, you never really know what you’re capable of – as an individual, or as a family unit. Of course, never in a million years would I have wanted this lesson to have been learnt through my children’s suffering but alas, this is the card we were dealt. Now I’m not going to get all philosophical on you, or worse still start posting crap memes, I just want to share what I’ve learnt about life in the past 12 months.
Lessons this year:
I’ve learnt that children are bloody resilient I can tell you now George will be itching to get back to school with his friends following theatre next week. I however will need to lie down afterwards!
I learnt that there are always people with a bigger struggle than me Every day i’m reminded that so far we’ve gotten off lightly. Yes, in comparison to Gertrude and her child with a snotty nose, we have had it hard, but honestly things could be much more challenging. We hear of, and follow, fellow oncology children whose treatment isn’t working, or where the bastard cancer has come back…. every couple of weeks there’s another.
I learnt what true friendship is. It’s someone holding your hand walking around Sainsbury’s the day before Christmas Eve to make sure you have some kind of Christmas dinner. It’s coming home from the oncology ward where your child is a patient to find your friends cleaning your house, your neighbours delivering Chinese food, and there’s a bottle of wine in a mop bucket. It’s people travelling out of their way, when they have their own families, jobs to get to, just to come and see if you and your child are ok. It’s company, chats and laughter in the face of adversity. It’s knowing your other children are completely happy and well looked after in the hands of someone else.
I learnt that I’m doing a pretty good job of parenting. I manage to feed them, get them to school, encourage them and I try to make sure that their emotional well being is my priority – not having the latest technology, the most expensive trainers… but that stuff inside that you can’t pay for is looked after. I learnt that it bothers my children more if I can’t collect them from school, or tuck them in bed at night more than anything else, because all they need is to feel loved.
I learnt what community spirit is. Without the challenges we’ve faced this year, how would we have known what beautiful hearts we’re surrounded by in our local community. It provides great comfort knowing we’re a part of it.
I learnt it’s best to hide some people’s profiles on social media rather than punching them in the face. Some people are shallow, some people are greedy, selfish, ignorant to the world… we can’t all be the same but we can ‘hide’ their profiles so not to be bombarded with their ‘shit’ day in day out.
I learnt that there are so many more kind people out there than mean people. Seriously, it’s part of our culture to assume everyone else is an arse, however through experience, this is not the case. Most people are decent.
I learnt that nurses do not get paid enough. Comforting myself and my son in the middle of the night, so many thankless tasks and skilled procedures…. these people deserve to be the highest salaries in the country.
I learnt more about my (now) husband this year than in all the years previously added together. And not in a bad way! Nothing like a testing time to bring you together with a new found respect for one another.
I learnt to smile and laugh with other parents on a children’s oncology ward. Who’d have thought it?
Cancer doesn’t choose Everyone is equal. There’s travelling families, families who don’t speak a word of English, families who clearly don’t have a pot to piss in and those who look like they’re shitting money – but none of it is relevant.
I learnt to be brave. Not much more I need to say about that.
There’s more I could add but it’ starting to feel like i’m in therapy!
Get the tissues
So back to the Shitmas tree… given all of the above, as well as our decoration marking the year we became Mr & Mrs Rooza, the most poignant decorations for us to reflect on there are George’s Beads of Courage. They loop the tree twice and are probably going to be double the length by next Christmas with the treatment that lies ahead. I’ve also added a shooting star decoration which we’re calling the ‘wishing star’… it’s for all of our little oncology friends who are putting up their fight, who still have some tough times ahead and their families that are in our thoughts.
Proudly on the front of the tree are some Angel Wings. These are to remind us of the children we’ve met, and their mummies and daddies who are without them this Christmas…
This year will be our best Christmas ever, we’re stronger, we appreciate the time we have together. We’ll be eating whatever food we concoct without any meticulous planning, the kids will receive the gifts we can afford and keeping out of Alder Hey will be a bonus! I will NOT being doing stress….
I hope you all have some form of Shitmas in your home this Christmas, if not a tree, I hope the sentiment is there anyway.
Just in case you were wondering if we all sing carols and hold hands of an evening now here’s a reality check –
Damien is currently sat stitching tinsel onto George’s Angel Fairy Ballerina costume and it’s 10pm, the night before it’s due in.
I won’t lie, as well as the shitmas tree I still have a 7ft Christmas tree in the other room with a <patronising tone> colour-scheme
The dog released it’s anal glands the other day after getting its head stuck in a plant pot holder and the house still smells of fish.
Sugar had her uterus removed yesterday and is walking around in a babygro to stop her chewing her stitches. It requires me to undo her arse buttons every time she needs to go to the toilet. About a hundred times a day.
Merry Christmas one and all.
Note: I know a few of our friends follow All about Erin and helped fundraise for her to get to America for life-saving treatment. We’re also supporting Jenson’s Journey, another little boy from Warrington who has leukaemia now after battling lymphoma over the last few years… so unfair, I know his family would appreciate your support – you can like his page here.