It was always going to be a challenge, surviving Christmas with cancer. I think we just about survived. It’s been challenging, emotional, hilarious, fun, festive, frustrating, filled with laughter and baby sharks, tears, tantrums, lots of temperature checking and ALL the food!
So much of the holiday period centers around food. All we do is eat food glorious food, i’m fairly certain that by that lull between Christmas and the New Year my body make up is half cheese and the other half is chocolate.
But Bilbo didn’t want to eat food, ANY food. It was always going to be a challenging time for Bilbo, but Christmas coincide with him feeling the full nauseous effects effects of chemo.
Starting where we left off
In my last post: Day 53: FOMO – Fear of Missing Out it was clear chemo was starting to impact how Bilbo felt and most importantly what he would and wouldn’t eat due to his taste buds.
By mid week Bilbo was off of most food. It is only now we’ve been able to reflect on how it happened and what has happened we get it. Everyone warned us about this. People who’ve also had chemo as adults, nurses and doctors. We knew Bilbo would not enjoy food as much.
Some describe a “metalic” taste, others have explained it as being similar to morning sickness. You fancy something then by the time you eat it, it either doesn’t taste as you imagined or you no longer fancy it.
Bilbo has had all of these scenarios. But we have to remember he isn’t an adult. So he doesn’t understand it is temporary, the taste won’t last forever. And that has meant he has lost trust in the foods he enjoys and no longer wants to even try them. We’ve had to build his trust one beige food at a time.
Being hungry is miserable. Being hungry and being asked by multiple people, multiple times a day “do you want this?” “can you try this” “what do you want?” “you can have anything you want” is stressful. Every question is answered with silence, a shrug, a flat no or an exasperated “I DON’T KNOW”
All I wanted is to find something that he wants to eat, he will actually enjoy eating. For days and days we pretty much failed.
And so the last week has been miserable – we survived Christmas, we managed moments of joy as a family we have been on overdrive trying to make lasting happy memories. But we’re bloody knackered.
After diagnosis I completely lowered my expectations of how Christmas would play out. But cancer has made a challenging time of year a lot harder.
Friday – 4 sleeps
The Friday before Christmas we were starting to go a little stir crazy. Our advent this year has had three different meanings:
- How many days until Uncle Gav is coming home…actually the one Bilbo could reel off with ease.
- Advent calendar countdown to Christmas. By about week 2 both kids had lost interest in opening the windows of their lego and playmobil calendars. Some days we opened three windows at a time to catch up. Harrison was always willing to open the one with chocolate. Fairly certain he still has no idea what it was for and doesn’t get the good times are now well and truly over – no more chocolate for breakfast.
- My own personal advent of how many days can we tick off of the holiday period and remain healthy and out of hospital. As we move into week two of the holidays this calendar is still going. We’d much rather spend family time at home and not in hospital and not together.
A trip to see my friends and all their kids was a welcome escape. Although as usual it came with conditions, worry and a bag full of “cancer stuff” in tow.
Lisa picked up a selection of stuff from Costco and ordered Pizza. All fairly straight forward kid friendly food. Sadly not for Bilbo. We pre selected a pizza he likes and took it with us. He didn’t want it. In fact he didn’t eat anything.
On top of him feeling like crap and already feeling different, everyone is trying to make sure he has what he needs. Suddenly all eyes are on him, pressure mounts and he shuts down.
Luckily for us the magic of Lego struck again. Ben has tonnes of the stuff and Bilbo was content to play quietly on his own but surrounded by the “big boys” playing on the console. For a few hours he was normal, he was just hanging out. A BIG THANK YOU to all the kids for letting Bilbo just be and making him feel normal.
Saturday – 3 sleeps
FINALLY the day was here…Uncle Gaggin (Gavin) was coming home. H and Bilbo were like two little maniacs. I’m not sure Luton airport knew what had hit it when we arrived.
They even managed to draw attention from the policemen much to both boys delight.
But as i’ve said before cancer gives us amazing highs and frustrating low lows. An annual tradition we’ve enjoyed since Bilbo was a baby is the visit to the street with ALL the lights. We’d saved it especially for Uncle Gaggin’s return so we could do it together. And Bilbo just wasn’t feeling it.
He’d barely eaten all day, he was irritable and frustrated. He didn’t want to get out of the car, then he didn’t want to walk. He didn’t want to share the wagon with his brother and attacked him.
As a parent this is the most challenging situation we face. How do you manage the sibling relationship. Should H be punished and not allowed to ride in the wagon because his brother is having an episode or do you punish the one who is feeling miserable and has already been punished so much with bastard cancer?
There is no right or wrong answer. You respond in the moment. You let daddy make a game of carrying H, you rope in Uncle Gaggin. Even Auntie Caroline showered H with attention and took him around the houses pointing out all the lights and festivity.
And you stand in the middle of a road filled with more lights than you can imagine wondering how your life got to this…your beautiful boy who loves Christmas and normally overflows with energy and excitement for the lights can barely crack a smile and looks utterly joyless.
Heartbreaking seems like a word i’ve over used in the last 60 days but I was…I was utterly fucking devastated.
Sunday – 2 sleeps
And so we rolled into Sunday, Bilbo had asked to visit the city centre to go on the train and the helter skelter. I steered him off this idea as we’d made a concious decision that we’d keep ourselves in as germ free bubble as possible. One snotty nose kid in the queue for the train could lead to a hospital stay for Bilbo – not worth the risk.
We were still battling food. Mum and I finished the food shop and came home with a variety of options we thought Bilbo might like to try. Kids cereal multipacks including coco pops (normal totally off limits), dairylea cheese triangles, laughing cow dipping things. His favourite crisps, meal options and all the fruit for smoothies. Literally anything I could think of.
We even had the most devine box of cakes from my dear friend Maxine. Her Christmas cake was to die for and the we all devoured the banana cake. Except Bilbo 🙁 Check out here website for cake treats you will thank me i’m sure: https://www.denbakeshop.com/
By Sunday we were also starting to notice a pattern. Bilbo’s anger was bubbling over more and more. His fuse was getting shorter.
We have had shouting, swearing, hitting, kicking, punching, he’s pulled my hair, he’s bitten me. He’s gone on a rampage through the house turning things over and trying to break things. He’s punched pillows, slammed doors, flicked light switches and screamed A LOT!
I reached my first breaking point on Sunday night whilst trying to give him his final mercaptopurine (6MP) on top of his weekend antibiotics.
He ran away, he screamed at me, he spat it out, he cried, I cried. It was literally the last fucking dose for weeks and it was the hardest one i’d ever given him.
On reflection it was probably the taste. It could have been his breaking point. Maybe he wanted to put his foot down, gain some control. Maybe he is as fucked off with cancer as we all are…if not more.
Monday – 1 sleep
Somewhere over the countdown I decided to take care of all the present wrapping. I realised we were on thin ice and should that dreaded 38 degree temperature strike I needed to be organised. Felt quite odd not doing the last minute wrapping glugging fizz and yelling at Rich to find more wrapping paper and fill my glass.
This should have left Christmas Eve relatively stress free, of course cancer had other ideas.
My mum saved us for a few hours. She took him to her house and apparently he was a delight.
She brought the Tasmanian devil back with her.
We had planned to join our neighbours for the annual Santa runway gathering. Tealights are positioned in the park to create a runway for Santa’s sleigh and the kids leave reindeer food.
Bilbo lost his shit over the whole thing. Getting a coat and hat on – NIGHTMARE. Organising fun lights to take – NIGHTMARE Cracking glow sticks and glow in the dark balloons – NIGHTMARE. Once again he attacked H.
We were all left wondering why something so simple is now so hard.
The only moment of joy was when he bumped into his teaching assistant and his face lit up.
I get it, I totally get it but my god it is so exhausting. Battling with him, what he wants to eat, his medicines etc. it is just so tiring it just doesn’t stop. And we’re having a relatively easy ride by comparison to others.
I’m left with a whole new appreciation and respect for full time carers, families struggling with life limiting illnesses that last a life time or are more challenging than what we are facing. I’m also left longing for the life we had filled with normality, where popping to the shop or to the park didn’t entail drama and world war three.
Somewhere in the middle of Mary Poppins normality did return. We had two very excited boys who couldn’t sleep as they took in the enormity of the big man arriving overnight to eat mince pies and cookies.
And we braced ourselves for what the big day would throw at us. Armed with my thermometer.
There are very few pictures because we were being present and up until lunch time we were actually doing pretty well.
Again like the rest of the week Bilbo has eaten very little. A spoonful of cereal here, a cracker with cheese there. Bilbo was being a champ though putting a brave face on and as we all tucked into a beautiful meal cooked by Rich and my bro. He sat with us and actually managed a roast potato and a yorkshire pudding.
I can’t remember the trigger, I can’t remember the exact moment but at some point after Zog Bilbo went bang. He lost it.
I removed him from the situation and well the rest is just a bit of blur. What I witnessed was a very angry little boy, like someone had taken over my baby and replaced him with a tornado. He screamed “get out” I tried to leave, he clung on to me. I held him tight and told him I loved him, I could feel his rage and anger boiling over.
Cancer couldn’t let us just have one day. One day of joy.
But who really ever has the perfect Christmas. The social media pictures you see are a pre selected filtered window. Had we been cancer free the kids would have probably stilled rowed over hungry hippo and kicked the crap out of each other arguing over the Lego train.
I can handle most of what cancer is throwing at us. I know we have the strength and the support to survive this journey. The two things that I can’t handle are how it changes my little boys personality and some of the treatments.
Firstly cancer has at times turned him into a stranger. Whether it is the steroids, the sickness, his moods, his anger. They are all so devastating to watch. I know how to cope with Bilbo, I know his ways. I have coping strategies to deal with his behaviour. Cancer is throwing curve balls we’re not prepared for. We are having to learn as we go.
Secondly procedures – Bilbo is so afraid of certain procedures. At the top of the list dressing changes and injections.
Bilbo needed both today and as he lost his shit on Christmas day, I felt terrified about his hospital visit. I knew we needed to change tact, we needed a new plan for managing his behaviour.
Reward Chart Take Two
We decided to resurrect the reward chart. Bilbo responds well to a star chart. And thanks to Rosie his swimming instructor we have a Lego pizza van stashed away. Once the chart is full he can have the PRIZE.
**NEW RULE** he can have stars taken away for shouting, being unkind and being mean to his brother.
And so we were able to leave the house on Boxing Day with renewed confidence that we’d have a better day.
And we did! Thank you Auntie Donna, Uncle Tezza and Isobelle for hosting us.
It was so refreshing to be out of the confines of the house and let the kids let off steam. We played games, ate food and behaved exactly like a normal albeit a bit crazy family.
Back to reality
And just like that our “cancer holiday” came to an end. We crash landed back into our reality. A visit to MK for an injection of chemo, a dressing change, a wiggle clean, bloods and more chemo through his line.
With the offer of 5 reward stars we braced ourselves for a challenging visit. We’d started sewing the seeds of what was going to happen over 48hrs. Bilbo has had two general anesthetics in the last few weeks so we’ve managed to have his dressing changed then. But today he was a bloody champ. Compared with a few weeks back the trauma over the dressing change was significantly reduced.
And the injection – over in seconds less tears. As he recovered we picked out the stars and placed them on the chart.
Food Glorious Food
This morning Bilbo had dippy egg. He ate some cheese sticks and tonight he managed a few spoonfuls of lasagna and some garlic bread. Never knew I could be so happy about so little food.
To hear the words, hurry up mummy “I’m starving” filled me with joy!
And tonight the boys have played together, giggled together, caused mischief together and even shared kisses and cuddles. I hope it is a sign of things to come for the rest of the holidays.
Our new years eve MRD test has been moved to the 2nd of January – HURRAH! We have more chemo on the 3rd and then we wait – AGAIN.
I’m incredibly grateful that we were able to spend Christmas at home as a family. Thank you to everyone who sent us messages and had us in your thoughts and prayers. Surviving Christmas with Cancer – check!
Christmas can be a tough time for so many. I know many families would have faced a tough one at home or in hospital. And to all the wonderful nurses, doctors and carers taking care of people over the festive period THANK YOU!