200 Days of Cancer
Today we’ve reached the 200 days of cancer milestone…and not surprisingly it doesn’t feel good.
A few weeks back I read a post from a parent in the Acute lymphoblastic leukaemia (ALL) facebook group we belong to. She was struggling, she was almost at maintenance but seemed to be in a worse state of mind in that moment than when her family had got their diagnosis.
I can now 100% relate.
I was very tearful, things upset me easily. I was quite shouty and not sleeping. But the weirdest thing about it all is that Bilbo was actually doing quite well. So it made no sense to me, which made me more anxious.
In fact Bilbo was doing better than well he was thriving and he literally kicked interim maintenances ass.
Back at the beginning
This week I finally get it. I get what that mother was feeling because this week has been FUCKING hard. An entirely new experience of hard. Like trying to get through the day with a 15lbs rucksack on my back hard.
And my theory…we ARE back at the beginning. We’re reliving the start of the journey – AGAIN.
The protocol we’re currently following is very similar to those early days. The cocktail of drugs Bilbo is on this week are the same ones we were dishing out in November, when we were just getting our heads around cancer.
Except back then we were cancer newbies, we didn’t know the side effects or what to expect next. We were just trying to survive the hours, days and weeks.
This time we’re seasoned cancer professionals, we know the pitfalls, the dips, the lows, the side effects to look out for. We aren’t just trying to survive. We are living cancer endlessly.
We’re not wading through cards and letters of support giving us strength. There aren’t endless comments on social media, texts, whatsapp. Things are pretty quiet.
And this time we’re already weary, we still have the fresh scars from the last battle. We’ve been dealing with cancer now for 200 days. And I can tell you the novelty has well and truly worn off for EVERYONE.
We are so close to the end of frontline treatment, we can almost smell it. Yet we still have a long cancer journey ahead of us. (1034 days to be exact)
My mind wanders into relapse territory, the what if’s, the long term side effects. I want to feel joy about getting to maintenance and the hope of getting Bilbo’s wiggle out and booking a holiday abroad. But I can’t quite let my mind fully go there because WHAT IF?
And What If? So what, we have no control on our future our destiny so why am I worrying?
How’s Bilbo doing?
He’s doing AMAZING for what his little body has been through this week, but even his amazing isn’t great. But he is tired, his eyes have dark circles and he’s struggling.
He’s been to school for the last 3 days because he wanted to. When I picked him up yesterday he was asking his teacher why there isn’t a weekend school. That is how much he wants to learn and spend time there.
But Mr Tilley explained he’d been quite tired at school but Bilbo refused to let him call me.
We can’t deny him this opportunity – to be normal. But i’ve left him this week at school with a heavy heart.
Heavy because I know his taste buds have been destroyed by chemo. He’s feeling funny as the steroids take over his body and we await the cravings starting, the mood swings have already begun.
We’re back to monitoring his temperature closely. He’s emotional, he needs a lot more reassurance than normal and he’s frustrated.
And he’s trying so hard to do what he normally does and what he is desperate to do…be at school, be with his friends – learn!
And as the week has progressed I’ve become more emotional, on edge, anxious. I’ve had dark thoughts. I worry more. I’m not good when i’m on my own and in my own head.
I tell people i’m fine because explaining all the reasons i’m not fine is more emotionally draining and exhausting. And because i’m sure listening to me whine about medicine and food negotiations isn’t that interesting…
But i’m not fine. I am back to where I was weeks, months ago where I am absolutely terrified. I am terrified that despite all the poison we’ve put in our babies body. It won’t have worked, that it will come back. That maintenance will not be easy and give us some “normality” because I can’t bare to believe in case it isn’t.
This post on instagram hits the nail on the head…
I worry that H will get sick too. Bilbo will go to sleep at night and not wake up. I worry that we push him too hard, that we don’t push him enough. I worry about the long term damage and if we’ve done enough during the last 200 days.
I’m worried about the impact on Harrison.
My worry is endless and I don’t know who I am most days. I have never worried about anything pre-cancer (ok maybe a little) but nothing like the worry I have now.
It is worry about things I know deep down shouldn’t be a concern but I can’t control those feelings in a way I would have pre-cancer.
Cancer is Cruel
As I type this Bilbo is playing with his duplo and loving life. He looks tired, he looks like a little boy who isn’t very well. And as he touches his hair he comments about how nice it feels and how much it has grown back.
I look up, I look to Rich and we just grunt “hmmmm, yes”
There is no big fan fare because the look we’ve just exchanged is the knowing look of fear, because we both know he’s very likely to lose his hair again in the next few weeks.
We say nothing…
We know how hard that was. How it was the visible sign that our gorgeous Bilbo was really sick. Cancer is a cruel bastard.
And as we roll into another weekend we will dig deep as we always do. It is my birthday tomorrow and we’re off to spend the morning with other cancer families climbing walls, with the Henry Allen Trust.
We can’t wait, time with the THAT family is always a real treat.
And other than that we will enforce rest on Bilbo. Build some duplo houses, towns and prepare for the week ahead. More chemo on Tuesday and surviving the week.