fuck cancer

<3 you table

thanks y'all.

it's pretty...yeah, hard to think about. but so is dying, which i'm not quite ready for, so i'm taking what i can get.

I'm not really sure if people just think I'm a dick or if they just don't know what to say. I spent about 15 minutes ranting about how literally everybody is failing us to my therapist yesterday and he just said I suppose that must be difficult to deal with. This week my wife's oncologist "forgot" to put her anti-nausea meds on her chart so when she got an injection that causes nausea the chemo nurse refused to give her anti-nausea medication. If she had a non-jobsworth cunt nurse they would just give it to her anyway, but this nurse just said sorry not on the chart fuck you. Her palliative care nurse is back from sick leave. Tbf she had a reason to be off sick, some fucking scumbag set fire to the hospice 4 years ago and she had PTSD from it. The cunt died before he could be charged but killed 3 people on his way out. So that's good I suppose. She had a scan yesterday which will determine if she continues chemo or just stops treatment and we see what happens

Try not to get ill, nobody will help you

in terms of in the thread at least (imo), its so genuinely hard to know how to respond that wouldnt seem so totally inadequate CP

thats no excuse not to acknowledge the horrific situation you're in and what a shambles it all seems and how nightmarish it has to be for you

im so sorry youve to deal with this, any of this, all of this, and i hope that the venting helps even an iota, you deserve any outlet and relief you can get

^^^This is very well said. No one does or at least should begrudge you feeling the way you do. I would likely feel the same way. I wish you and your wife any momentary relief you can get.

CP, been thinking of you and yr wife.

Indeed so. And you as well, table. What a collective misery.

yeah, it's pretty awful!

i'm looking at the bright side, which is that now i get to get another cheeky tattoo: "Rectum? I nearly killed him!"

(one friend i said this to was like, "that's horrible!" and i couldn't really make them understand that the joy of a dumb but true joke like that is what keeps me going )

Thinking of you, table.

sorry, and thanks everyone

table, what's happening to you is also horrible and I do feel for you, and everyone else going through this

Good thoughts to you and your wife CP, the amount of shit you have to endure is staggering.

Table, please be well <3

<3 CP and table.

Yeah both of you <3

Same here.

<3 to cp and your wife, and also to table (i completely appreciate the joy of the joke)

cancer is such an asshole

Indeed it is.

https://sickmouthy.wordpress.com/2019/07/20/12-months-of-childhood-cancer/

Damn, Nick. Brutal. But also I'm so so glad things are - at the moment - ok. ish.
Arrival's on telly on Tuesday, btw.
How's Em - going back to work is a big deal.?

Nick that was so powerful and hits on so many feelings I'm also experiencing - suicidal urges, anger at religious sentiments. our situations are quite different but so much is the same. I am OK, mostly, too, it might not seem like it on here sometimes and on those occasions I'm not OK, I am trying though.

love to the Colonel and table

so we got the scan results today, and they were bad. been kind of expecting it because they are always bad, but you always hope something might work. further progression in the liver, this chemo not working either.

we had some good news, or at least not totally awful news, though. the previous useless wanker of an oncologist told us that was it, if that chemo didn't work then it was spending hours in a chemo ward on a daily basis or nothing. but the new oncologist (I hadn't met him before, my wife saw him once a few weeks ago before the scan) seems OK and he says there is another tablet chemo we can try, although if that doesn't work, then it really is IV chemo or nothing. my wife is pretty sure she won't do the IV chemo because she'd have no quality of life. she'd be in a hospital ward for hours per day and feel like shit all the time. life expectancy if she comes off chemo is 6-12 months.

Ah man, that's rough - I'm glad there's some good news though.

sorry about the bad news, CP - though glad there may be another option to explore. best wishes to you both

also best wishes to table, that's brutal - as Tombot put it, unimaginable. it's good to see you back, sorry it's in these circumstances

jfc scik mouthy, that really opened up the waterworks over here.

it gets at what has been bothering me the most recently: that so much of what i do is colored, if not defined, by this thing that i have little control over and didn't ask for, obviously.

love to you and yr family, and also to you and yr wife, CP. <3

so sorry CP
and to you, table x

hoping for the best for ye cp

I just tried to apply for a "Carer's Discount" card, because I've started going swimming as some kind of vague attempt at looking after myself, and the nearest swimming pool has a discount for "carers", and these are the options for "Relationship to Carer":

Parent
Grandparent
Child
Grandchild
Sibling
Aunt/Uncle
Niece/Nephew
Friend
Other

am I missing something here? or is "spouse" not valid for this or something. don't get me wrong, cancer sucks whoever you are, but like what the shit?

today's fun thing was that after we had the meeting with the oncologist, my wife checked the status of her repeat prescriptions, and they all came up as "Rejected". which we haven't had for a while, because as per instructions from her GP, my wife has been writing pleading notes with her prescription requests, begging them not to refuse them, because this is where we are now, you have to beg for your medicine to get it. this is all absolutely fine and just practising medicine as they normally do.

I rang up basically ready to shout at anybody that had the bad luck to answer the phone, and it's all fine because the prescription app shows "Rejected" when the actual status is "Waiting For Authorisation". I mean you have to take the good with the bad, sometimes the complete failure of the NHS to be any kind of remotely functioning system at all works in your favour! it's all fine, it's just not been authorised yet. with any luck, it'll be authorised within the next 70 years

just found out an old friend has terminal cancer. feel like a jerk for not keeping in touch. she has a young family too.

sorry about yr friend, kinder.

and jesus, CP, yr making the horrors of our system in the US seem like child's play.

Fuck Colonel, that's horrible, even if there is a potential bit of hope via the other oral chemo. I don't know what NHS trust you're under but it sounds terrible. Makes me think we've been very lucky with ours. Love to you and your wife.

Table: love to you and your husband.

Kinder: Em's understandably struggling. Been off work for 18 months now, no confidence or interest in going back to work, but I think she'll benefit from it once she's in it. She's kind of accepted that she needs some counselling now, and could manage it logistically, but is having real difficulty finding one; the crappy over-the-phone assessment by our work-counselling scheme determined that she didn't need counselling (wtf?!), and two other people she's approaching privately simply haven't got back, which strikes me as bad practice for any fucking business soliciting trade, but morally well out of line if your business is counselling people.

Wrote another thing: https://sickmouthy.wordpress.com/2019/07/29/who-are-we-if-were-not-that-cancer-family/

For me, returning to work now would need some sort of total immersion, re-absorbing it all again without being required to actually do anything for a couple of weeks - and not having to switch to badgered-parent-mode for the rest of the time. At least that's what I found difficult before. The counselling thing sounds rubbish! Hope she has more success.

my wife started going downhill 2 weeks ago, we called 111 and our GP, who were both absolutely fucking useless, as per fucking usual. The GP didn't even call back until I called again the next day. the hospice nurses did come out and gave her injections but she wasn't getting better so she was admitted to hospice for 2 weeks for tests. it turned out to be swelling in her liver, but it's not currently life threatening, but was making her sick. they gave her steroids which seem to have helped but now she is back home, and needed to get anti-nausea medicine refilled, and now she's not in hospice care, that means going through the fucking GP.

I called this morning because although she's been prescribed this medication before, it wasn't on the list for repeat prescriptions. we've had this issue before and the GP receptionist just put it on the list and she was able to order it. this time they said they couldn't do that, but my wife could write in the medication on the online prescription request and they would do it. but she tried to do that and there wasn't anywhere she could see to do it. so I called back this afternoon and after 20 minutes on hold was told that actually they were wrong this morning and you can't do that. and they have no record of her ever taking this medication before so they would not be able to fill the prescription, even if the GP did a phone consultation. I contested this because she definitely has had this medication before, and she then checked again and found a letter from the hospice from a few weeks ago and that was enough.

why do we have to go through this shit all the fucking time? they can't even give correct information out, the incompetent fucking cunts. all the fucking time we have to deal with these absolute scumbags. everytime we hear "oh you have to go through your GP for that" our hearts just sink. probably doesn't help that my wife's assigned GP is on holiday for the entire month of August. please tell me more about our poor overworked GPs. the fucking dregs of the healthcare profession

seems unbelievably & relentlessly shit, I can't imagine how it feels to keep running up against such total dysfunction & indifference in these circumstances. all the best to you two, you deserve so much better.

I'm really sorry to hear that, hope that things turn around a bit for you.

So I'm kind of grossed out by this, but Casper's in The Sun today. Or, at least, on their website.

https://www.thesun.co.uk/fabulous/9844047/babys-rash-dismissed-eczema-battling-cancer/

Also the Daily Mail, and Metro.co.uk too.

We offered to be a case study for the life insurance company, and they do all their marketing via press. We thought about it, and figured if it raised awareness of the disease that was a good thing, so we said yes. Em did a phoner last week, we sent the press company photos, and now he's a human interest story.

The Daily Mail website managed to mangle all sorts of basic facts (like his fucking age and name) that everyone else got right.

Yeah, not sure how I feel about this. We've got no money out of it. Dunno if the company will sell more critical illness for kids cover. But if it helps someone, somewhere, that's a plus, right?

the Sunday Times did an article about end-of-life doulas and featured my wife in it and got her name wrong, it's par for the course with these scumbags tbh.

just got back from the GP. had to hand-deliver a letter to request they move my wife's anti-nausea medication from the acute list to the repeat list because they won't do it over the phone, or rather they might, but it depends on how much of a jobsworth cunt the receptionist who answers the phone is. they used to accept prescription requests via email but no longer do for some fucking reason. why are they going backwards? only written letters are acceptable, in 2019. we'll see if they actually fix it this time or if we have to go through this rigmarole next time she runs out

Written letters? wtf.

more complete shit from the completely broken NHS:

- my wife had stopped taking the previous chemo because it wasn't working, then went into the hospice, but was supposed to start taking a different chemo when she got out. for unexplained reasons this was delayed, something to do with the oncologist referral not going through. but even when it did go through, they couldn't fit her in at the chemo ward for another 3 weeks, so she would be off chemo for 6 weeks
- so my wife emailed her Macmillan nurse to complain about the delay when it is urgent that she gets back on chemo. she gets an out of office, nurse is on holiday. fair enough people go on holiday. so she emails the other nurse. she is also on holiday. how the fuck are they letting both cancer nurses go on holiday at the same time? I can't even do that at my job. when the nurse gets back from holiday she managed to persuade the chemo ward to fit my wife in a week earlier, so that's something I guess
- a community nurse calls and makes an appointment to visit last Friday. she doesn't turn up. no phone call, nothing. we don't have a number for the community nurses because they don't like giving them out
- today at the chemo ward a nurse realises the pharmacy didn't put the chemo in the fridge, so they have to go back to the pharmacy and get another batch. lucky she noticed eh?

these are the people we have to trust our lives with. just relentless incompetence over and over and over and over

hello all. CP, i'm so sorry you and your wife are suffering so. totally inhuman incompetence, it seems.

an update from me: surgery went well, though i've had two hospitalizations in the six weeks since due to issues with my small intestine, which tend to be the most usual complications following the specific type of surgery enacted upon me.

i went back to work after twelve days, which is as totally bananas as it sounds, but i'm only teaching two classes and they're both going pretty well. only had to cancel one session due to health stuff (knock on wood).

the big news: the pathology reports were negative from all the tissue and lymph and everything they took out of me. so at this point, i am cancer free.

it's my birthday on Friday— i turn 35— and we are going out to my favorite restaurant and i am going to eat a fancy expensive hamburger and drink too much.

thank you for all of your well-wishes and thoughts, they've meant a great deal.

i'll also be around here more now that i can sit down without experiencing massive amounts of pain. (long story).

thats great news table

a great update, ttitt. I hope the remainder of your recovery goes smoothly.

sending out good wishes to Mr. and Mrs. Poo as well.

tabes, happy to hear you are living well, dear fella!

Colonel, wishing the best for the missus and you.

These days my chief medical worries remain paying for care (or rather, everything else, as my family will pay for the care if I can't).

<3 tabes!!<3

update: latest chemo doesn't work. cancer has spread in bones and liver. I'd allowed myself to get my hopes up a bit, but we did know that it was likely the only reason my wife feels better lately is because they put her on steroids a few months ago, and tests have confirmed that is why, not because the chemo was doing anything.

they are out of options. the only thing left is IV chemo, which would severely reduce my wife's quality of life, and she said she wouldn't do it, but now she says she might try it, because she's not ready to go yet. the hospital are going to do a biopsy, because apparently there is a remote chance the cancer could've mutated into some other form that might be treatable by other drugs, but that feels like they are clutching at straws, it is not very likely that's happened

as always wish the best for her, CP

oh fuck fuck fuck cancer. desperately sad news, CP, and I'm so sorry.

oh CP i am sorry. nothing but love for the two of you <3

Well damn. Hoping for the best, somehow.