fuck cancer

cloying encouragement is one of the worst things anyone can do in response to shit news, yet loads of people do it. it only rubs it in and makes it worse. saying nothing is infinitely more helpful.

our friend who’s been going through this is too nice to snap at anyone, but we’ve been in visiting him when others are there running off empty platitudes of hope and encouragement, and the look on his face says it all. the intentions are pure but it does not help. like, he’s putting himself through incredibly traumatic surgeries and chemo, obviously he’s not giving up.

I completely understand being in that position of wanting to help but not knowing what to say, I'm in it myself. Saying nothing often seems like the better option, but that risks appearing cold or indifferent. That's why I just posted in here, hopefully I would never actually snap back at someone but I can be hotheaded so

totally understand. there’s no cardinal right or wrong way to respond, but some sentiments are basically “well fuck i’ve got nothing good to say but i should say something”, which in itself is good and well-meaning but sometimes a heartfelt “well fuck” or “what can i do” or “fancy a pint” would be better.

Maybe, in a more general sense, it's intended as "don't give in to despair" i.e. enjoy what you can, while you can. Nobody knows what to say and a good fraction of people will fuck it up. I know several people who have been through devastating times and have told me that dealing with other people's emotions is a massive and unwanted workload. That said, CP it sounds fucking horrible and I wish you strength and whatever good luck is possible.

Maybe, in a more general sense, it's intended as "don't give in to despair"

true, also perhaps they themselves are not coping with the news (even though they’re relatively distanced from it) and are probably comforting themselves as much as anyone else. maybe i should walk back my criticism tbh

I can understand to a degree the reticent to prescribe strong painkillers given the opioid epidemic in the USA, but how much pain do you have to be in to get anything stronger than fucking cocodamol?? Have your leg sawn off or something? My wife asked for painkillers and the GP prescribed her cocodamol, I looked it up because it wasn't helping, it's the same fucking strength as OTC. I could go and buy her some Neurofen Plus with a higher dose in it from fucking Morrisons right now. WTF. Now she's having the go-around trying to get something stronger, the hospice nurse is on holiday, on hold to the GP.

My wife has decided to hire a "death doula" to help her with plans for the rest of her life and her eventual death. I don't really like to ask for money because we are not poor and can afford to pay for a certain amount of this but if you would like to help out with a couple of quid her GoFundMe is here:

https://www.gofundme.com/babsdoula

a heartbreaking story. Not heard of death doulas before but sounds like an excellent idea. xx

that sounds like a very positive choice. hugs to you both!

yeah that is a p great idea

Friend of mine who I've known a very long time passed away this morning after trying to beat non-hodgkins for the last year or so. He was often cantankerous, mischievous and getting into trouble with everyone but he was a talented artist and antiques restorer and a great goth DJ and songwriter. Cahl, your larger than life obstreperous nature will be well missed, mate. :(

<3 sorry for yr loss trayce

Sorry for your loss

oh jeez trayce i’m so sorry

I totally thoguht he had it beat. He got better after all the chemo and initial zapping. Was back to working, hair growing back and all. Then for some reason he had to do a stem cell treatment - wether it was neccesary or experimental I'm not sure? But it went bad, fast, and he lasted barely weeks.

Now all I can think is how I never really caught up with him much, and I'd hate to think more people would turn up to my death than they do my life. I'm a shit friend.

nah you’re not a shit friend. this sort of things just hurtles in out of nowhere.

Seconded. I’m sorry, Trayce.

Adding to the condolences — it’s never easy.

Autumn Almanac otm - take care of yourself, Trayce.

Fuck things that aren't quite cancer but which basically are, and which infect your 5 and a half month old son.

We need a LOT of positive thoughts right now, so please send them. If everyone can say "spontaneously resolve" out loud while thinking of my baby Casper (because this cancer-like disease sometimes does) I'd greatly appreciate it.

Specifically this: https://www.macmillan.org.uk/information-and-support/childrens-cancer/cancer-types/langerhans-cell-histiocytosis.html

What a blow. Here’s to the spontaneous resolution Casper deserves. Fuck cancer and especially rare childhood cancers

Said out loud indeed.

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.