fuck cancer

casper is in a great hospital (spotted a post of yours on FB earlier today when I realised I knew where you all were).
I have friends who have had a lot of dealings with that place over many years.
never heard a word of complaint from them.
I will chant "spontaneously resolve" a lot from hereon sir.
oh, and please don't forget to look after yourself.

Ugh, how awful. Solidarity to all the Mouthys.

best SM

scik <3. spontaneously resolve!

said it. :)

Sorry to hear. Hoping for a spontaneous, happy resolution for all.

positive thoughts for all of the mouthys big and small

Yeah

wishing the best, Scik

Best luck SM and family. Keeping you in my thoughts. My partner beat a similar childhood cancer — it happens!

It’s good to know. Thank you.

thinking of you & family, Scik. spontaneously resolve!

sorry to hear this Nick.

An update (that I wrote for Facebook).

We’re home.

Because Casper took his meds well over the weekend, his MRI and first bone marrow came back clear, his obs were very stable, and he isn’t presenting as being in any pain – in fact, he’s presenting as being a very happy, smiley baby, most of the time – we’ve been home since Monday teatime. Casper is now an outpatient at the RD&E rather than an inpatient at Bristol Royal Children’s Hospital.

“It must be a relief to be home,” says everyone.

Yes, but….

Hospital is a safety blanket. Medical professionals everywhere. Every meal taken care of. A very small physical environment to exist within. Constant support. Home is… terrible freedom. What if we get something wrong? We know we can call literally any time and get support. We know we’re 10 minutes drive from Exeter hospital. But those are facts for the reasoning part of the brain, not the emotional part.

More thoughts in a bulleted list, because it is my job to know how people consume content, and because this is how my brain is thinking right now.

• Cancer does not care who you are. On the paediatric oncology ward are all races, social and economic backgrounds, cultures, sexes, ages (within a range, obviously). Cancer does not give a fuck who you are or where you’re from. Sure, some cancers are related to lifestyle choices and social / environmental / cultural factors. But when you’re 11 years old, or 6 months old… cancer doesn’t give a fuck about that stuff. Cancer is arbitrary.
• CRUK estimate that half – that’s 50%, or 1 in 2 – the population will get cancer at some point in their lives. Half. https://www.cancerresearchuk.org/…/cance…/risk/lifetime-risk
• We’ve found a few people on the internet who’ve written about their children going through Langerhan’s Cell Histiocytosis. Many of them have relapsed. I’m assuming the ones who don’t, don’t write about it, because if there’s no relapse, there’s no trigger to update? You just get on with your lives, right? Remind me, in a year, and 5 years, and 10 years, if we’re lucky, to update people that we’re lucky. To let anyone else who goes through this know that you can be lucky.
• I am scared that sympathy fatigue may kick in. I hope it doesn’t. This is me trying to prevent that happening. If anything, now we’re home, we need more support. And all that support needs to be is popping round for a cup of tea, sending a message, having a conversation with us. It doesn’t need to be about sick children. It can be about anything.
• Sometimes you talk to somebody, fill them in on what’s happening, and you can see them getting emotional, choking up a bit, their eyes dampening. And your initial thought is “what are you getting emotional for, it’s OK”, and then your second thought is “yeah, this is fucking awful”.
• We can’t lose him. I’m pretty sure we won’t. But it’s going to be very tough going.
• Second chemo is tomorrow. The first at Exeter, the first as an outpatient.
• Today has been a tough day; our first at home with nothing to do. Tomorrow’s chemo was meant to be today but got postponed, so we were left with this weird stay-of-execution feeling. A friend came round for lunch. We went to Em’s parents for tea. I took Nora and Casper to Sainsburys, and to the park. I’ve probably felt at my lowest today; it’s been easy while I’ve been running around doing things. Pausing is tough. Especially when you can’t really pause, because there are three people and two cats in this house who I need to look after.
• We are going to own the fact that our baby boy has this disease that’s basically cancer. We have to own it. We don’t want to be the cancer family who people pity. We don’t want to be the cancer family who people admire for being brave or strong. Your family will almost certainly be that cancer family too at some point, I’m afraid. 1 in 2. 50%. Half of people. We just want to deal with it and get rid of it and carry on with our lives. If / when you go through it too, I will try and help you.
• Quite often it feels like we’re in a shit made-for-TV (or Netflix, in this day and age) film. A really slow and long and boring film. You want to stop it and put on something entertaining instead but you can’t change channel.
• Thank you, again, to everyone who has helped. For all the shit jokes, for the food, for the company, for the flowers, for the gardening, the haircut, the toys, the cat-sitting, the plant-watering, for everything. Keep it up. Please.
• But maybe no more toys. The house is full. Shivering Dave the crocodile has taken up the last available room.
• And maybe no more cake. At least not for me. I’ve not been bike riding properly in a long time. It’s having an effect.
• We love you.
• x

thinking of you and yours. cancer did a drive-by on my family this summer. it just really sucks.

• And maybe no more cake. At least not for me

haha.
this is spot on.
during our chaos we had so many cakes brought to ours that our freezer became full of cake.
took months before I could put a lasagna in there.
in fact scik, there are so many points in your post that hit home (especially the comfort zone that is the hospital) …
but hey.
hang on in there sir, there is a lot of love flowing in your direction.
xx

That’s really well written about a really shit time. Take care, man.

That’s really well written about a really shit time. Take care, man.

Resurrected my blog: https://sickmouthy.wordpress.com/category/langerhans/

https://sickmouthy.wordpress.com/2018/08/18/our-first-saturday-night-at-home-together-in-seven-weeks/

Well said, sir.

Nick / Colonel Poo - very sorry to hear about your situations (I rarely look at threads I haven't bookmarked so have just found out)

Hadn’t spotted CP’s awful news. Love to you and yours.

Fuck cancer forever.

https://sickmouthy.wordpress.com/2018/09/06/an-average-day-when-your-child-has-cancer/

you and yours have been in my thoughts a lot in recent weeks.
and while you are clearly biased, he really is very cute.
xx

Not fun reading, but a really good bit of writing. It's hard enough having a baby, the sleep deprivation and the worry, and this must be exponentially worse. Hope the treatment goes well.

Absolutely in no way comparable, but the brief time I spent in hospital with my small one was truly miserable - not even counting worry about his illness or ongoing care etc just being there with an overtired baby who wouldn't be put down to sleep, nowhere to crawl around, and when he did eventually sleep was woken up for obs - plus massively sleep-deprived myself - was thoroughly unpleasant. Plus all the logistics of family life and feeding myself. And time seeming to warp inside the hospital. I would've gone mad if I had to do it for another hour - I really feel for you both.

https://sickmouthy.wordpress.com/2018/09/20/casper-update/

The more you're in hospital the more you learn to deal with it; we have a 'go bag' semi-packed and ready to go with just a few key additions, and a 'routine' we can slip into pretty easily now. It's still horrible to be separated, to have to put Casper through the treatment (getting enough blood to run tests from him can be awful), and all that other stuff (sleep deprivation, managing Nora's emotions etc), but it becomes more dealable with.

Casper update: https://sickmouthy.wordpress.com/2018/10/01/family-life-with-an-ill-baby/

tldr: he's doing well but family life is awkward.

Sending best for sure.

https://sickmouthy.wordpress.com/2018/10/10/managing-my-emotions-managing-your-emotions/

Hard to find the words, but you sure did. That's beautiful and eloquent and very loving. I'm pretty sure you mum will be ok with the swearing and confession of hedonist adventures of yore. Even the running around naked part. <3 to you and your family man.

https://sickmouthy.wordpress.com/2018/10/18/stand-up-for-casper/

Thoughts with you and yours. Fuck cancer.

Wishing you smoother sailing ahead. Yay little Casper, I get the feeling this is harder on everyone else than it is on the little guy. Which is a good thing I suppose? Well really it all just sucks. Fuck u cancer.

fuck.
cry all you need to nick.
fear not what others think, its a necessary part of the process.
love-n-hugs to you and yours.
xxx

https://sickmouthy.wordpress.com/2018/10/25/oranges-and-lemons/

nick <3

I have to go down to London next week to attend the funeral of a old dear friend who died of brain cancer a week or so ago. He was in his late fifties. This is the second close friend I have lost to cancer in the last ten years - both of them heavy smokers. As the smoking of cigarettes becomes more and more of a minority habit, I hope that mine will be pretty much the last generation frequently killed off too soon and easily by smoking-related cancers. In the meantime, fuck cancer.

condolences to you and strength to nick

my fear is that other carcinogenic substances and activities are replacing smoking

indeed. Ward and Nick, <3

indeed to "fuck cancer". i don't know enough about other carcinogenic activities replacing smoking to "indeed" that, but it wouldn't be the most surprising thing, i suppose.

you guys <3
you are going through one of the shittiest things a person can go through.
Hospital is an awful place to spend a lot of time; no wonder it's gotten you down. I know I would not be able to deal.

i am so sorry nick, this is a hard, terrible thing that’s been visited upon you all. i hope your family can get back to the underappreciated tedium of normal life as soon as possible and that caspar has a long and healthy life and never remembers a thing. kia kaha<3

https://sickmouthy.wordpress.com/2018/11/02/in-limbo/

dunno what to say really but wishing the best for you all so fucking much

That’s all I want anyone to say really when I post in here. So thank you.

Echoing NickB

Echoplex on both over here
<3