fuck cancer

ugh jon that's rough

So there's a little girl who's a classmate and friend of my younger son, who, two years ago, was diagnosed with a rare type of kidney cancer. Since her diagnosis, she's mostly been absent from class while undergoing various intense treatments. Every now and again she'll make it school to see all her friends and have a small bit of normality back in her life, but it's been a long ongoing battle for her. Generally there's a very high rate of success for the treatment of her particular illness - some 90% or thereabouts, but unfortunately her cancer has returned and all the treatment options that the NHS are able to provide have been exhausted. However, there are still further courses of treatment available privately, both in the UK but mostly in the US, and as giving-up isn't really an option, her parents are urgently trying to find the £100k that it's going to cost.

Sorry if I sound vaguely robot-ish describing the situation btw, but I'm still finding the whole thing really scary and hard to process. How the fuck does an 8-year old cope with this whole thing? And I just can't fathom what her parents must be going through at all. I've found it pretty much impossible to think about, let alone discuss... my wife's needed to chat about it sometimes - she's a lot closer to the parents than me and I've just basically been quite useless here and unable to deal with it at all. It's only now that there's something to be done that I feel like I can even approach engaging with it properly.

Anyhow, there's a whole little fundraising operation kicking off here - kids making and selling stuff, parents thinking up various little schemes and calling in favours from friends and aquaintances. Someone's mum knows Simon Cowell's mum and reckons they might be able to pull a few strings; one of the school dads is a professional footballer for a minor Prem league club and he's talking about tapping up his football mates; someone else knows a fairly well-established gothy singer with a decent following who's supposedly going to write and sell a song especially to raise some money... the benefits of living in a relatively well-to-do city I guess. All of this talk of DOING SOMETHING is so hopeful, god knows if these people will actually deliver but even if only some of these things come through I think there's a fair chance of meeting the target. And I know the fundraising is kind of a diversion from worrying about the medical side of things, but I'll happily take that for now and surely it must be a huge boost psychologically for the family too. I'm organising a sponsored bike ride for my elder son and his friends to do, and I'm actually doing some crazy running race in a couple of months myself which I'll get people to sponsor me for, so I'll post a link to that once I've sorted a page if that's okay. I keep nagging my wife to bake me some cakes to sell at work, I guess I really ought to get on with it myself but I'd give Roxy's cousin's mooted bakery a run for their money as far as making things-you-wouldn't-want-to-find-in-your-mouth goes. So... full of hope and anguish here and can't stop thinking about this thing, apologies for rabbiting on.

Hope everyone's doing okay out there with their own battles!

uggh huge wall of gibber

Sounds like she's got the same thing I had when I was little - if that's the case, your friends might already be onto these people for info:

http://en.wikipedia.org/wiki/National_Wilms_Tumor_Study_Group (although American, very informative)

I hope they have good luck with fundraising and are able to get your son's friend sorted out; don't worry about blethering on this thread!

My friend mentioned waaaay upthread got his all-clear two weeks ago and is also the proud owner of a PSA reading of 0.02.

That is it exactly Suzy and thanks for the link.

Also way to go Suzy's friend! :)

A colleague and friend to many at my workplace died far too young at age 53 today. She fought a confounding form of cancer for 2 years before it robbed this vital, active woman completely.

Just needed to say it.

Sorry to hear, Sparkle Motion. Hope you are doing okay.

After a couple of rounds of chemo, my cousin's wife had a double mastectomy last week and is recovering well. She has two teenage kids and is a lovely, lovely woman. Doctors seem sure that the operation means she will be fine from now on.

Thought I would post a bit of happier/hopeful news here, I hope that's okay.

NickB, the community's support must mean so much to that family. That's really lovely.

My mom (stage IV ovarian) was lucky enough to get in a study where she is one of the first two humans to take this particular drug. We had some great news when scans showed tumor size reduction recently. But now she is back in the hospital with a fever and fluid needing to be drained.

It is a roller coaster

it fucking sucks

my mom was with me for every harebrained scheme I could think of, she thought nothing of it

good luck Sufjan

Thanks, brownie. We will see how it goes. This thread and ILX have been very important to me in coping with this. It is very sad but also strangely comforting that so many of us go through this sort of situation. I am of course partial toward my mother, seeing as she fed me so many pretzel sticks pushed into cheese cubes mid episodes of The World of David the Gnome. But my fiancee, who has no such bias, seems to think quite highly of her as well. Her own very healthy mother has behaved quite badly in this life, so one can imagine the questions we direct toward the sky on a clear night such as this one. Still, even our closest friends have health problems I'm not sure I'd trade for. Good luck to everyone on this thread.

best wishes to you, sufjan, (your mother sounds top notch) and to everyone else who has loved ones facing this. i lost one of my best friends five weeks ago to breast cancer that had spread to her liver. i loved her dearly, as many people did. she was very funny and rotten and bossy and brave. she reminded me of a heroine from an old fashioned girls' annual, but without the piety. i was lucky and managed to see her the day before she died (she lived in a different state) and she was still being thoughtful and laughing and taking an interest in everyone else's doings. i'm glad her suffering is over but it is a huge loss, these are all huge losses.

<3s to all

Mother in law pancreatic stage 4 update-- Thursday night my wife's sister took her to the ER because she was in tremendous abdominal pain despite the morphine patch-- at first they thought she had a severe gallbladder infection but by Friday had concluded it was simply that the tumor got bigger and is impinging on the gallbladder and causing bile ducts to be backed up etc. we came up from NYC the next day (my birthday, grimly). Her white blood cell count was very low on admittance. That's been attributed to the chemo now. Her onco expressed misgivings about continuing chemo now, since a) the tumor grew apace despite it and b) the white blood cell having plummeted. Wife and her sister are very much against this idea as chemo represents the only hope of beating this back. She is still in Brigham & Womens Hospital; the quality of this cluster of facilities in Boston is amazing to me. I wish all hospitals could be like these. Anyways, at this point everyone (she herself, my wife & her sister, the medical teams) want her to be in a 24 hr care environment; apparently she will be covered for this if she has been in the hospital for three nights or more, so that's what is going to happen once Brigham & Womens discharges her. Wife and her sister are dealing with the cognitive challenge of "I am putting my mom in a home". Everyone, every combination of people involved not least the patient, fighting each other, sometimes so fierce and dirty that this only child's brain shuts down and spine turns to jelly. I am in the au bon pain in the lobby rn and have been on my own most of today on my own because I have head cold symptoms
since last night and thus can't go in her room.

Hey Jon - I work at BWH and will be there tomorrow at 7:30 am. I say this for two reasons. 1) if you're still around and would like to grab coffee or if you see me in the hall and have a "random ILXor spotting" moment I don't want you to get freaked out. Also, the physician I work for is very kind and knows practically everybody in the hospital. It's a wonderful place but if your mom needs anything at all or if I can ask him to talk to the Drs or just do anything, please don't hesitate to let me know.

(I am in that Au Bon Pain at least 2x a day)

Oh shit ha! We will probably get here tmrw around then and wait for the drs to come on rounds etc. if I am still head-coldy I will be kicking around the lower reaches here. I can't remember if we are FB friends or not but I'll send u a request right now if not. Estelle's onco is doctor Ng and I don't remember the names of the other team members rn but the nurse practitioner, who is awesome, is named Nina.

I deactivated my FB so I'm not on there anymore. But you can always send me a message through ILX mail. I work in the Heart & Vascular Center so don't know most of the onco docs but, like I said, if anything comes up my guy has some pull and might be of help in getting better attention or answers or anything but I'm really glad her NP is awesome! :D

Ok I'll ilxmail u

Thoughts with you Jon. Having met ENBB, you should do your best to meet up. She's awesome. And hopefully I'll see you later this week.

Aw :) likewise! Are you in the area?

Sadly, no. I'm coming to New York the middle of the week.

ENBB I can't seem to get ilxmail to work on my phone. It keeps telling me I'm getting the captcha wrong. I have a B&W question and if u feel ok abt emailing me direct my address is joncroaker ~at~ gmail

Just did :)

U are kind.

ilx mail Nevers works iirc

Headed to Boston for my third consecutive weekend. Things are not good, but MIL is in a 'skilled nursing facility' in Roxbury rather than the hospital so that's something. Appetite is a real problem; she's not eating much despite her onco's exhortations. My wife has set up a medical w33d appt but is really intimidated by all the choices of different strains you can get and wants to make the right choice. MIL has OCD and is a v high anxiety person so that means we want a type with low THC right? Does anyone have any specific consumer advice on this? They seem to have figured out the right pain cocktail at least for now so this will be aimed at getting her eating.

wow I just went down a serious Google rabbithole there

iirc you want high CBD/low THC, yes

there are some fairly informed opinions here:

http://www.drugs-forum.com/forum/showthread.php?t=230396

good luck man, sorting through all those can be confusing

I cannot answer those questions but I do know that, for my mom, she would eat occasionally and ten minutes later vomit, she could not digest food anymore. It really didn't matter if she was hungry or not.

What happens when she does eat? Is it digested?

She is taking pancreatic enzyme before eating, and yes when she does eat she digests it. But says eating doesn't make her feel well.

Thanks for that link. It's comical how little I know about this subject even in a recreational context

i would hope that the person yr wife meets with will be at least at little knowledgeable in that area

if you don't get answers, dm me & i can ask my brother in law. he took care of the w33d for both my mil, and his uncle (both seniors, both had late stage pancreatic cancer) - he's a w33dhead & a paramedic so is p knowledgeable on both sides

Yeah you can hit me up too; my bro is very very up on the various strains for various needs. I'm sure your w33d person will also know what best to use for appetite stimulation.

Thx VG. If I DM u it may be through FB since I only have my phone with me and I haven't had much luck using ilxmail on phone.

Quincie for the same reason-- if u don't mind asking yr bro for his take u can email me at the address I gave ENBB a few posts up.

I don't loves peoples but I loves ilxors.

<3

Ugh this is dumb and frustrating. Mrs Jon found a weed strains info app on iOS called leafly and did a lot of research on there last night while I was en route. We are leaning toward a strain called Dr Who (lol) which is said to be an appetite stoker with minimal anxiety and paranoia effects. But its weird and sort of lame how it works in MA, the patient obtains a card from the cannaMed center but then instead of going to an actual dispensary you contact one of this licensed network of "caregivers" aka dealers who will come to your house to sell you stuff. We have all these questions and it would be so much better to go to a dispensary and be able to ask someone about things. Instead wife has written emails/left msgs to 10 of these dudes who operate under rather lol dba names and only one has called her back in 5 hours, and that one doesn't have edibles.

Oh yikes that sucks! Is vape an option rather than edibles?

It's def a second choice if we can't get edibles. I spoke to a very nice young man at 'Vape Daddy' in Framingham this evening who told me which devices are good. they're not cheap these vaporizers!

My wife comes back home for a little while as of Monday night so we are trying to get this squared away before then...

Oh geez if you were in CA I'm sure bro could set you up with a loaner vape (I think the dispensaries he worked with offered this?). Will call him tomorrow to ask more about strains. Just talked with a friend whose brother-in-law was in home hospice (colon cancer) with all the opiates in the world but still had a lot of anxiety; some med mj was super helpful for him. His mom inhaled it and exhaled into his 02 mask so, er, kind of vape-ish, I guess?

my mil used a vaporizer with a big plastic bag - fill the bag with smoke from the vaporizer & suck a few hits from the bag (kinda like hippies with nitrous balloons lol). she didn't need very much

My mom is also struggling with appetite now. I was told her appearance had changed since July 4th weekend from the resulting weight loss, but I was not really prepared for this. She's had a bit of a Sonic slush drink that we got her this weekend, and that is it. She now also needs fluid drained from around her lung every afternoon. I don't know how people can be so brave. Also, fuck cancer obv.

Aw man :(
Is she still on the clinical trial?

it will be reviewed, but she will likely be taken off that trial. the only hope left is another trial if she's eligible for any. I worry that the progression of her illness and the resulting complications make her ineligible for most trials now.

I hope she can hang on until the wedding in october at least

but she's fought harder than I ever could, so I'm not asking for anything more from her with that hope. good luck finding a good medical mj for your mil, Jon. it sounds like a good option.

Strength to you and your mom SG, and whatever kind of luck governs this blighted byway.

We got the hookup finally. We are now "waiting for the man" at a Papa Gino's down the block from the nursing home. He's bringing cookies, tongue drop tincture, basically just what we wanted. Only 2 out of 11 of these guys replied to my wife.

MIL is super nervous and thinks we are gonna get arrested. :( Unfort the law dictates she has to meet the person face to face.

My friend fighting stage 4 melanoma just posted this message:

"So the verdict today at MD Anderson was that all the tumors have shrunk significantly. So, With minor surgery to get the rest of the tumors out, I will be in remission. A few months ago when I found out the tumors came back I felt hopeless and out of control of my body. A lot of cancer treatments are based on "try it and see" this causes a lot of anxiety for the patient. In most cases nothing works. I do not wish this type of hopelessness on anyone. So to celebrate my small victory I skated at the skate park in Spring, Texas."

awesome <3

Right on, man.

Since my mom stopped radiation she's lost 20 pounds in about 6 weeks which doesn't sound right. She's also in agonizing pain. As such, she went to the dr two days ago and yesterday was sent for a full body CT scan. She gets the results at 3:30 today. Pretty nervous. :/

Oh gosh E my thoughts are with you today.

My MIL is in hospice in Sudbury and not doing terribly well. Her pain is mostly under control but that's all they can really do at this point. I'm going up there tomorrow...