fuck cancer

ok, here goes.
after a long long day i have had a few glasses of red wine, so please bear with me.
on april 6th 2011 my wife was told "in error" that she had stomach cancer.
[long story - but this should have happened in my presence at some later pre-arranged time, but the fact was dropped while i was on childcare duties 30 miles away .. ]
given that my wife had previously been to see her GP for 2 years re ongoing stomach issues this came as no real surprise, but still, 2 years is quite a long time to have such concerns.
[turned out to be a stomach ulcer that had been left untreated .. resulting in the cancerous growth, but still the advise is that it has not spread beyond the stomach]
so after a 3 month stretch of radical chemo, to isolate and focus the growth, the surgeon today removed my wifes stomach, meaning that today is the beginning of a whole new life for us all.
so, the question is : are there ILX'r who have been through this process, as i have no idea as to what happens next !
how will she be able to digest food etc ?
and far more importantly, will red wine be no longer suitable as a method for her to deal with the daily demands of modern life ?
oh, and in the spirit of the original thread (i hate cancer) : fuck cancer.

as far as i could tell (i looked - honest !) , ile needed a proper 'fuck cancer' thread.

=( Best of luck to both of you

Oh fuck, I'm so very sorry to hear that. btw there is a 'curse cancer' thread but fuck anyone who holds this thread against you.

mark e, I am so sorry you and your wife are facing this. I know a few people who have had some or all of their stomach removed, for various reasons - each has certain foods that aren't processed well and so those are avoided, but digestion starts with chewing and nutrients are absorbed in the small intestine. One friend takes an additional enzyme with each meal, but the others eat smaller meals more frequently. They all are able to still enjoy alcohol, though I'm sure that can vary. See if you can find a support group locally or on-line that can help with the questions/concerns you will both be confronting. I wish your wife a rapid return to health and strength.

while i understand and appreciate the concerns, can i just state the following : today is a great great] day.
the surgery went well, my wife is ok (as far as i know), and that is a massive, repeat massive thrill-buzz.
oh, and while red wine is not the answer to most of our daily stresses it can form part of our occasional parental release ..
(i would prefer a very loud listen-n-dance session to kylie, but hey, cant have everythintg ! )

others eat smaller meals more frequently. They all are able to still enjoy alcohol, though I'm sure that can vary.

have heard this from others.
only time will tell.

ta.

Fuck cancer indeed, so many of my relatives are dead from or are have contracted some form of cancer.

My paternal grandmother had her stomach removed for the same reason back in the 1960s. Although her meal size was reduced, she still very much enjoyed food and drink; one of the first things she taught my brother and me when we used to go and visit as wee lads was how to make a "proper" gin and tonic for her. She lived until she was 90.

I really hope your wife can continue to enjoy life in a similar spirit, and that she's making a fast and full recovery from the op.

cheers bill.
cant believe that its only 7 days since surgery given that yesterday she was looking so good, and up and walking (aka "thank f*ck for the nhs").
and yes, the advise seems to be that she can eat-n-drink whatever.
there may be some food types that may cause issue, but hopefully, the main impact will be that meal times will be a lot more relaxed as opposed to gobble-and-go.

I guess it must not be too major to have your stomach removed since lots of people get their stomach removed who have a gastric bypass. I mean not too major compared to having your pancreas removed or your colon and getting an ostomy or something. I hope it goes well, I'm sure you will adapt in time and you will be just fine. SOrry to hear it

My grandfather is in the last stage of leukemia. I am trying to keep in mind he had a long and healthy life so far. But given that his life wasn't too great, it's difficult...

exactly one year on and shit gets raised to a new level of emotional chaos.

we weren't even able to get away for 7 days for some well deserved family time without a mad midnight 250 mile dash to a&e.

oh, and all the positivity and hope i displayed earlier in this thread proved to be fucking worthless.

outcome post chemo/surgery : stage 4. terminal. no more treatment.

we currently live in waiting rooms dreading the test results.

fuck cancer.

i'm really sorry, mark. my best wishes and support to you and your loved ones. and fuck cancer.

mark, I'm so sorry. fuck cancer.

I am at a loss for words. I... I wish I could take some of the pain away. Fuck FUCK FUCK cancer. I am so so sorry.

How terrible. I wish you love. Fuck cancer.

Mark, I'm really, really sorry. My best wishes to you and your family.

Echoing the above. Utterly terrible news.

emsley clan : -1

cancer scoreboard : +1

fuck cancer.

Mark, I'm so sorry; my condolences to you and your family.

oh Mark I am so sorry. sending you love and support in this time.

echoing the above. my sincere condolences to all of you

A hug and kiss for you, Mark.

echoing the above. my sincere condolences to all of you

― dayo, Thursday, April 26, 2012 8:35 AM (1 minute ago)

^^^ So sorry, Mark. Fuck cancer.

Sending you love and the tiniest lightening of this burden. I'm so sorry.

i'm so sorry mark.

Horrible news, very sorry to hear this, good thoughts to you and family Mark.

ta for the wired tlc ..

this just goes to prove that even in this day and age of techno miracles, in the majority of cases, the powers that be really dont have a grasp on this evil disease.

we were told back in december that there was a good chance of 12 months of settled life.

to say the last 4 months have been a living hell of health related shyte would be an understatement.

we have no let up from the hospital/a&e chaos, so in some ways, i'm glad that she is now no longer suffering, but damn, its heavy on those of us left behind.

how horrible, Mark. RIP, & I hope you too are able to find some peace in this.

mark i'm so sorry for you and your family's loss, i hope you all get all the love and support you need

Oh Mark, I'm so sorry to hear that. Wishing you all the strength in the world over the next few days and weeks.

That is horrible to hear, take care of yourself, man.

Also: fuck cancer.

Oh my God. I am so so sorry to read this. I can't imagine how horrible the past year must have been for you. My best wishes go out to you and your family.

Damn.

My condolences.

mark, I'm very sorry. words on a message board don't do it justice.

this just goes to prove that even in this day and age of techno miracles, in the majority of cases, the powers that be really dont have a grasp on this evil disease.

I switched oncologists recently, going to the big medical center named after one of the Rockefellers. My new guy is the teacher who taught my two old guys.

We went down the list, talking about the medications I had been given, what my diet could be, drawing a DNA helix on the paper of the examination chair and saying 45 minutes of exercise based on my age x 5 - 2 or something. That last one, "What does running up and down stairs have to do with cancer?" made him literally stroke his beard and say "We don't know. Everything I've told you is basically an educated guess at best."

Now, this guy is pretty educated, but every honest doctor would be the first to tell you that plugging tubes of poison into people's veins and blasting them with radiation is witchcraft at best.

Now, this guy is pretty educated, but every honest doctor would be the first to tell you that plugging tubes of poison into people's veins and blasting them with radiation is witchcraft at best.

i have an uncle who is a highly qualified doctor in canada - and he basically told me this back last year, so while we were getting the 'we will cure you' story from various folks here, i've been quietly preparing for this outcome due to the insider information from him.

still, doesn't make dealing with the fallout any easier ..

good luck with your battle pplains - you have my heartfelt wishes and hopes for a more successful outcome.

for us, the big reveal was the discovery of an evil lump weeks after the completion of premium grade chemo that she underwent as that confirmed just how aggressive the fucker was.

(uncle confirmed that she got the best that was available .. so no complaints on that score)

Heartfelt condolences, mark. I'm so sorry that things turned out this way.

i'm so very sorry, mark.

Found out yesterday that mother in-law likely has pancreatic cancer. She got sick the day after we left for vacation, but apparently her doctor's been all kind of amazing and has run 6 months worth of tests in 2 weeks. From what I understand they think it's still in early stages, and possibly slow-growing though I'm still trying to make sense of everything so I don't exactly know all the details.

the worst part is that her Mum died of cancer when she was quite young, and her brother died of pancreatic cancer a couple of years ago, so it's just like AAAAAGGGGH FUCK YOU CANCER SERIOUSLY

the gallows-humor lighter side is that because of a blocked bile duct she now has a major case of jaundice. She said over the phone that she was pretty green, but when she answered the door mr Veg and I were like, 'Whoa. you weren't kidding.' Wicked Witch of the West level neon green. It's really weird!

We visited with her yesterday - she's very scared, tired, etc, but still very much herself. I love her so much...it just fucks me up that she's dealing with all of this. Ugh!

bleh

AAAAAGGGGH FUCK YOU CANCER SERIOUSLY

seriously.

hope they caught the fucker in time peppermint.

I know. I'd like to have her around for a lot longer :)

btw, my condolences to you, mark...a big DOUBLE FUCK YOU CANCER

cheers pepper.

borderline alcoholism + v. loud music helps.

a little.

<3 <3 <3

my mother in law was diagnosed with terminal cancer on Friday. Somehow the fucking doctor she has been getting x-rays and cat scans from for the last five years completely missed the huge tumor crushing her heart. My wife had to take an emergency red-eye last night and fortunately made it home before her mom died. now they're waiting for more tests.

fuck you, incompetent doctors, fuck you cancer, etc.

Somehow the fucking doctor she has been getting x-rays and cat scans from for the last five years completely missed the huge tumor crushing her heart.

due to the time, i am assuming you are US based pepper, cos this scarily similar to our situation.

3 years of 'problems' that were ignored cos it would have cost a few quid to send bh for a CT scan ..

so, yes fuck you incomp. doctors and fuck you tory policy to make doctors even more important in the decision making process.

once bh was escalated to the next level of care then it has to be said, the care was absolutely fantastic, but the fact of the matter is that he problems were ignored by the the GPs for 3 years .. and the GPs defence : 'bh is too young to get stomach cancer'

ok, time for more wine ..

hang in there, also check out the revive on the Steve Albini thread, very inspiring.

I was told just today that my aunt was in the final stages of her cancer, so I feel you. It's amazing how much money + resources gets pumped into research and how it's still such a crapshoot of who survives and who doesn't.

hang in there, also check out the revive on the Steve Albini thread, very inspiring.

Here's the link. It's about a musician with terminal cancer staring the fucker down until the very end.

http://www.electricalaudio.com/johngrabski.html

pp i had no idea, i always avoid this thread. rooting for you.

same here PP. And Mark e,Sleeve,musicfanatic good luck to you guys too. Sorry to hear about all this. Good vibes to you all.

"he made a choice between two options, undergoing a regimen of treatment that might extend his life at the cost of its quality, or a less invasive course that would allow him to continue living more-or-less normally by suppressing some of his symptoms and alleviating his pain, without increasing his longevity. He chose that second course."

I must confess, if this is the appropriate place to say so which it may not be, that this will be my path, should it happen.

just to clarify, my tests have been clean since 2008, though I'm still in the system and they still dig out polyps every year that could turn into something worse.

I usually don't post in this thread because my story hasn't taken the turns others have made here.

Cancer is such a random unstoppable killer and it's very frustrating because some get better and some get worse. At least when you get eaten by a shark, the doctors don't go, Hmmm, let's try some of these painful treatments for the next six months and see what happens next.

There's nothing anyone can say here to mark or anyone else that can make the pain of losing someone any easier to take. Cancer's biggest sin isn't that it takes one person, but that it can infect entire families, the people left behind.

I feel like a jerk even saying anything, but I'm having such a hard time getting used to my mother-in-law's cancer.

It's basically going to be a fact of life for her. The cancer is small and slow-growing. She decided that she does not want to have chemo, since the doctors were not convinced that it would help and with her being upwards of 75 it could have pretty bad effect on her. She's not a candidate for surgery, which would have removed part of her stomach and left her in chronic pain for the rest of her life. So, the way it stands now, without any treatment the prognosis is 5 years. (And I know they don't mean much but still, hearing it in numbers like that is just, ugh).

She's decided to try a nutritional approach, using the Gerson diet? I'd never heard of it but apparently it's kinda popular among people in her situation, or with ppl who do not want to go down the chemo road at all. So she's gotta eat loads of fruit and veg and juices...and have enemas :/ ... but she figured it can't make her feel any worse, and her doctor basically told her to do nothing at all.

all of that aside, the hardest thing for me is that I haven't been through anything like this, not with anyone close to me. the last time a family member was even sick was my grandma when I was teenager. I was incredibly close to her, and she died when I was 16 -- my relationship with my MIL is very similar, because she's the same age my grandma was when she passed, and she's the most intelligent, caring, loveliest woman I know and I cannot get down with the idea that FUCKING CANCER is inside her now.

I know none of what she's going through now necessarily means that she has a death sentence, and yes we all die. but these past few weeks, I'm okay when I'm around her and we talk and everything's just like it always has been but if I think about her for too long on my own I just start crying because I really really don't want to lose her. She's like my second mom.

ugh even crying now as I type, goddammit. I just need to find away to settle into this, I need to get to some kind of acceptance, stay logical and not be scared and it's so hard.

<3

:)

ditto mooks here. sending good thoughts your way. fuck u cancer, and all illness, really.

thanks

Hoping this will help, if only ever so slightly: my dad was diagnosed with throat cancer...crikey, almost two years ago. He felt fine and was in generally good shape and was expected to live at least a few more years upon initial diagnosis. However, he went in for some extreme chemo treatments which killed him in less than a week. Although, obviously, not all situations are the same, it is helpful to remember that modern medicine sometimes doesn't know shit about dick. On the other hand, I know a friend of a friend's dad who, afaik, continues to do fine years and years after his cancer diagnosis as a result (one assumes) of undergoing a diet change much like the one you describe. So...hope for the best, I guess. It's all you have the power to do in your shoes. Strongest of wellwishing, VG.

that means a lot, Deric, and it really does help to read that. Thank you <3

However, he went in for some extreme chemo treatments which killed him in less than a week.

OMG I'm so sorry, Deric. That must have been so awfully hard.

I used to talk with this older woman who took chemotherapy with me. While my treatments were once every two weeks, for six months, hers were to go on perpetually once a week. She said that she wasn't ready to give up on life, despite the discomfort and spoke fondly of the Whippets she was raising.

I'd lay in bed for the next couple of days and think, man, that woman must sure love Whippets.

In other words, you'll never hear criticism from me about older people saying to hell with chemo, I'm going to stock up on vegetables and head for Mexico like Ambrose Pierce.

Had thyroid cancer in 2000. Every time i am about to get the green light on no more six month follow-ups, something suspicious turns up. Then it's another few years of watching and testing and nothing really turning up, which is great. At what point do you say fuck the follow-ups? Because this can go on forever.

Sorry to hear about your MIL and what you are going through, Vegemite. I have heard really great and miraculous things about the Gershon diet. Only, in fact. My uncle has been following the diet on his own, without the proper juicer and has leukemia but has been in extremely good health since. Being pro-active and making decisions like that, I feel, is a very good sign.

When doctors says a cancer is slow moving, you can bet then then it is slow moving. It does mean that they want you to come in for follow-ups and testing pretty often. What this does is keep cancer on everyone's mind even when things are not progressing or even looking up.

Thanks tera, I'm glad there's good stories about the diet -- honestly it sounds like a cross between a genius idea ie the nutrional approach, but also quackery with all those enemas but I definitely admire her being so pro-active. And she has a lot of support within the family, plus a family friend has been on the Gerson diet for a year or so now post-breast cancer, and is also a GP so she's been very good at helping get my MIL get good information.

I talked to Mr Veg about it last night, and he said that there's no reason I shouldn't just talk to my MIL, instead of trying to come to terms on my own. We have always had a very close relationship so it might be a good approach. idk. We'll see.

Talking things out can help tremendously.

forgive the question, but "MIL" ?

is that a US thing ?

this thread just underlines the sheer fucking evilness of cancer.

something i never really appreciated until it crashed into my world

(i know i know, ignorance is bliss, and in my case, it really really was bliss as we genuinely had a perfect life)

oh, and its one month since the evil lump changed our lives forever.

2 weeks ago i buried my wife.

so image how i felt when @ 9:30am this morning, my boss called to see if i was coming to a meeting this afternoon with HR to discuss my situation re returning to work !

my answer : "i'm still filling in the f*ckin' paperwork .. "

so a quick question for anyone else who has been through similar situations to me : how long before you went back to work ?

MIL = mother-in-law

I couldn't imagine ever going back to work, tbh. I guess at some point you have to, but damn.

So very, very sorry Mark.

I couldn't imagine ever going back to work, tbh. I guess at some point you have to, but damn.

this is where my head is, so it was not easy as when boss called i was on the verge of an outburst along these lines.

the problem is : the company have been great, and my boss has been and is great.

just that my official sick note ran out a mere few hours before, and they were on the phone checking my whereabouts, despite the fact that last week i went into the office to tell them 'i'm f*cked up, and there is no way i'm coming back for a while'

hey ho, paperwork and forms are the foundations of the modern world i guess.

I'm so sorry man.

@ VGirl, it might sound sappy to say so, but in you it sounds you've got a fortunate mother-in-law.

one month on.
the big question : how long is it when i no longer see my wife die everytime i close my eyes
its ripping me to pieces.
cant remember any of the good stuff due to the sheer intensity of the last 12 months.
this shit really hurts.
think i need to see someone and get some advise on how to deal with this which is not easy given that on the surface all appears ok ..

Mark, I'm sorry for your loss and I sympathize deeply (although I could never understand exactly what you're going through).

I thought I was just coming back home to support my mom while my dad was in hospital with a sudden downturn related to his chemo treatments, when in fact I managed to get into town and to the hospital just in time to actually watch my dad die. It's a horrible thing to experience, and I wouldn't wish it on anyone. As I mentioned upthread, this was almost two years ago and I'm still shaken by it. The best advice I can give: seek a grief counselor, or any kind of therapist/psychologist/psychiatrist. Someone who you (or your insurance) are paying to be there on a regular basis to listen to you. As helpful as friends can be as a shoulder to cry on, they might not be there when you need them to be or as much as you need them to be. It's important to remember that some people feel more helpless than others with respect to helping you cope with such a huge weight and also that this isn't a weight you should expect anyone in particular to help you shoulder if that person isn't a professional.

All I can tell you with any certainty is that when I was confronted with tragedy (my dad's death was only one of a number of deaths and heavy events that transpired over the course of several months), I tried the "shaking it off" method for as long as I could, pressing forward and hoping that day-to-day life would take my mind off of it. It only worked for so long, and I completely turfed out after I stopped seeing my psychiatrist at the time. I'm only starting to get back on track now, two years later, so I think it's really important that you take care of yourself now and continue taking care of yourself for as long as it takes until you are well. And possibly quite a bit after you think you're well. Most importantly, though, don't try to carry the weight yourself.

Ohhhh, and thank you, Erica, I didn't see your post yesterday. As evidenced by my most recent post, it really was and has continued to be a pretty rough road. And my dad and I didn't even particularly get on that well. You just never know how it's gonna hit you until it hits you.

thanks deric.

went to my gp today.

she toyed with the idea of upping the dosage of my anti-deps, but i resisted that.
however, i will be referred to the relevant people to talk about my issues around the death, to try and help me get to the next stage.
best thing = my gp telling me that this shit can take a while to get over, and she will help out in anyway she can.
i.e. ongoing sick notes.
as getting a call at 9:30am on friday morning from my boss (2 weeks to the day after i buried my wife, 4 weeks to the day after she had died), asking where i was as my official sick leave ran out on the day before.

him : "HR have organised a meeting for you this afternoon"
me : " i aint going to be there"

not the most helpful of attitudes.

so hearing someone tell me that they can swing, and that my boss will just have to wait for me to get over this was a massive boost that i needed.

That's great to hear. A lot of people are really dense when it comes to the grief of others.

deric (of the most amazing facial hair !) : that seems to have become very apparent in recent days.

old school macho attitude british seems to be at the fore - 'stiff upper lip', and all that crap.

head of HR = wife of high ranking bloke in the forces therefore one suspecst has a more clinical/cold 'tude towards dealing with death.

problem is that i'm not of that type of breeding.

this is the first time i have had to go through such an experience (and hopefully the last), and given certain aspects of the death, i'm struggling to reconcile various issues (all appears ok to the outside world as i have to function on a day to day basis for the Lads, but this stuff goes way deeper than being able to do the ironing).

my feeling is when you go through something like this, work may as well be another planet. Like, if you're a person who needs to throw themselves into work to cope, that's one thing...but yeah, I would feel no guilt at all for thinking your boss can sodd off and cope without you for a while.

"my feeling is when you go through something like this, work may as well be another planet. Like, if you're a person who needs to throw themselves
into work to cope, that's one thing...but yeah, I would feel no guilt at all for thinking your boss can sodd off and cope without you for a while.

indeed * 1000

yesterday i was walking to school to pick up small and one of the mums asked me re returning to work.

my answer : 'i couldn't give a shit re work'

to which after a moment of raised eyebrows, she eventually answered : 'well there's your new priorities'

which summed it all up for me ..

but it's like, this is your *life*. it's right to feel all those messy feelings and emotions and sadness...how could you not.
I think onlookers just have a sort of weird shelf-life for empathy, where they're sympathetic for a week or two and then they just don't want those tendrils of sadness in their life anymore so they want to shove you back into your normal routine so they don't have to talk about it. maybe not as blunt as all that, but something like it.

they're sympathetic for a week or two and then they just don't want those tendrils of sadness in their life anymore so they want to shove you back into your normal routine so they don't have to talk about it.

ringo bingo to the power of infinity.

i've been thinking about you a lot. i'm very sorry for what you've lost but also for what you have to go through next. it's going to be difficult and it might take a long time and i really hope you've got kind people in your life who will keep loving you and accepting you no matter how angry and sad and mean you get at times. one of my good friends lost her husband suddenly five years ago and had a terrible time of it but she is finally happy again and is amazed to be because for ages and ages she thought her grief would never end. meanwhile, other people's lives were continuing as usual and they didn't have to work incredibly hard to just get through a day and yet some of them were horribly judgmental.

but she is finally happy again and is amazed to be because for ages and ages she thought her grief would never end.

my world.

cheers estala.

i rarely open up on ilx, but this thread has been a vital resource in recent times.

thank you all.

onward, friend.

and estela otm.

mark, I am so sorry.

Hey Mark, I've got nothing particularly useful to say, but just wanted to wish you all the strength for soldiering on for however long it takes to get through to the other side.

Hi Mark -- I want to offer my thoughts to you too. Strength is hard to come by in people, and I admire what I see of it in you. Fuck cancer.

mark, I can't imagine what you're going through, but i'm thinking of you, and i'm glad your gp is supportive.

i just found out that a friend i hadn't talked to in years and years just died of cancer. he was a real joker and had strong attractive teeth.
iirc he's the first person my own age who i've known to die of a disease (rather than accident/od/suicide/other). sucks. RIP, man.

I'm sorry to hear about your friend La Lechera. My mom was diagnosed with stage IV ovarian cancer two years ago. She beat it with two surgeries and chemo. Unfortunately, we recently learned that it has metastasized to her bones. Since we caught the initial cancer so late, I'm a big believer in the Canary Foundation's emphasis on early detection. I'm hopeful for new technologies advancing early detection. But until we get there, I'd just like to join the chorus here on ILX and say FUCK CANCER.

I can't call Indiana. Radiation either worked or it didn't on Oct. 31. And I'm too much of a coward to call and ask. Girlfriend knows something is up. I'm just defeated, and I don't know what to do but shout it into the abyss of the internet.

I know what I should do. I should call.

Yes. Yes you should. Whatever you hear, whatever the news, you should call. We're holding you up, we're right here, always. recognizing the fear doesn't make you a coward, it makes you human.

fuck cancer.

on the day this thread gets revived, i find out that the husband of one of my cousins with whom i have had no contact in 20+ years has fought the good fight re surgery etc, and yet like with my wife, the evil lump is back, and so now they have to decide whether to fight more, or accept their fate.

to make matters worse, the family has 3 young children, one of whom is totally a 'daddys girl'.

also, i found out that an elderly aunt of mine who has also been fighting this fucking evil, now has been advised that the lump has moved into her back.

which experience tells me, things will not improve as this was the beginning of the end for my wife, and she too has to decide on the next stage.

she is frail, and relatively elderly, so its not an easy choice to make.

in other news .. i went back to work a few weeks ago, albeit on a very part time basis, and i have to say that both my boss and HR have been absolutely fantastic.

i could not wish for a more understanding set up that i now have.

as for you new folks to the thread, my heart goes out to you ...

fuck cancer. fuck cancer. fuck cancer.

I hope you called, Sufjan.

Mark, I'm really glad to hear that work have been so understanding. You must feel really besieged, hearing about these further cases of cancer around you.

Ditto that. I know you were under some stress/apprehension earlier that yr work weren't being all that acommodating to your situation/feelings, so its good thats changed :)

fuck you cancer.
fuck you fuck you fuck you.
how many lives ruined.
how many children are missing people they love due this evil fucking disease.
i thought i was coping, but today, on the day i should be celebrating 21 happy years of marriage, i need to curse long and hard at the fucking evil shit that has been given the name 'cancer'.
fuck you.

http://25.media.tumblr.com/tumblr_mejkk0Gd4q1rffx0to1_500.jpg

Today I went to visit my grandmother, who lost her husband (my grandfather duh) to cancer not even a year ago. She had broken her arm and was in hospital. They had done various tests apparently. So they found a lump. A big lump in her kidney. Monday we'll know more. But seeing she lost quite a lot of weight and broke an arm... Y'know what it could mean seeing I am posting it on this thread. God damn it. This has not been a good year. Not at all.

But on the other hand, she's in her 80s. You have to take that into perspective.

sorry nathalie :(

Ah, she was never a good grandmother. She was a very shitty, abusive mother. An alcoholic. Wonder if that had an impact? Probably not? But y'know I saw her a lot since my grandfather was diagnosed with terminal cancer a few years back. (He was an abusive father too.)

Man, I have had one fucked up year. (And fucked up family too. lol)

But it still sucks y'know.

I feel very sorry for my aunt who has had to do most of the shit. My father being in Japan and my uncle being a shit family member.

Still crying. Fuck.

Mark, Nath - thinking about you and hoping that '13 is better for you and yours.

Can I just say Fuck MS and Leukodystrophy on here? They are not cancer but just as fucking horrible. My wife had a lumbar puncture the other day to determine whether she has MS or the more destructive Luekodystrophy due to "extensive white matter lesions on her brain, quite striking for an MS sufferer of 6 years". If it is adult onset Leukodystrophy the doctor has told her it will be a more rapid decline in motor/cognitive function than MS. She is currently housebound and can only walk a few steps at a time before she falls or needs to sit down. She is constantly suffering from tiredness, vision problems, headaches and depression. She is still home educating our son who has autism, onset tourette's and epilepsy. I know this sounds like a very unhappy household, but we have a good time and it is a lot better than it sounds! I just get so fucking angry sometimes that a mother who has fought so hard for our disabled son. She has fought countless battles for him and worked so hard on his speech and language problems and then she gets hit with this shit. Anyone on this thread that have been hit any terminal disease as a sufferer or a partner to a sufferer or family - I feel your pain and wish you all the best.

Damo, obviously you can say fuck MS and Leukodystrophy. I wish you and your family the best as well.

yeah damo, go for it. I'm so sorry about yr wife, that's so rough. My sister in law was diagnosed with MS last year, I def sympathize.

i have a line manager and a boss.
over the last 18 months they have both been brilliant re my situation.

anyway, this week i returned to work after taking the festive season off.
then a couple of hours ago the boss (who rarely talks to me personally), asked to see me in an office.
after the basic chit chat, he then tells me that he has terminal cancer (primary = bowel, secondary = liver), with a matter of months to live.
this man is my age, 44, the healthiest person i know (diet, fitness freak etc), and has 2 v. young children (one is 3, and the other a few months).
he wanted to tell me the full story as opposed to the official line that he has announced to the company i.e. he is going to be cured by the chemo.
i guess so he could talk openly about his situation with me.
this is a good good man and once again, this evil fucking shit is going to destroy a happy little family.

i'm fucking gutted for him and his gang.

and to think i had tried to start 2013 afresh with a whole new outlook ..

sorry mark.

cheers, dr m, but no apologies needed for me

its just another case of how fucked up life and this evil shit is.

[he also revealed to me that he had read my blog - which must have been tuff for him as it kinda mentions stuff from the other side of the situation
i.e. the surviving partner]

also, morbs genuinely hoping your experience goes well this year ...

Oh shit. Keep an eye on yourself Mark, this sounds like it could be pretty rough for you

What do you tell your boss? Having gone through what you went through, mark, what would you tell anyone facing the same thing?

well, thats a whole story unto itself isn't it.
i started saying certain things, and then stopped as i thought this is too much for him.
so, i said that if his wife wants to chat to me and ask me anything at anytime, then i'm there for her.
of course, i suspect that she, like me, will be in a form of denial, and not wanting to face up to the reality ..
as for my boss - he is a very controlled, precise character.
he is all about project management .. flow charts etc and seems to be approaching this in the same manner.
needs to know everything, but yes, i did stop from saying certain things ...
but he wants to have everything sorted out before the end game kicks in, and was asking what needs to be done to make things easier for his wife ..

why is he still working?

he isn't.
he came in today to tell the team ...
suspect that will be it bar the odd pop in session ...

this sounds like it could be pretty rough for you

as per the usual way things work for me, this has proven to be correct ...

i hate delayed reactions like this ...

Oi, never dreamed I'd post to this.

A friend (in her 50s) had cancer before I really knew her, in 1999, and it'd been gone for years, only to come back in 2011. Prognosis was mixed at the onset and we were never really sure what her chances were, but we knew it was going to be rough.

I wouldn't pretend to put this in the same category as situations above, as having immediate family members or having it yourself is far worse. But, it may sound weird, but even at 32 yrs old, I've not had a friend pass away before, and certainly not of cancer. And while I hadn't been in close contact with this person in quite some time, we were a part of the same Caroling Company and I just saw her the day before my birthday, and she looked a bit emaciated, but, for the first time, also felt defeated, and couldn't pretend to put a positive spin on it.

I just got word from my best friend today (who was much closer to her, as he's been in this company with her for years) that she's likely not going to be around much longer, because it has spread to her brain.

I'm still having trouble processing it, I'm feeling guilt for not having visited her in the hospital prior, and although I've been doing my usual thing where I suppress all emotion since I'm afraid of feeling any kind of emotional pain, I've not been able to. This is just horrible.

FUCK CANCER.

soon to be mother-in-law fighting stg 4 gallbladder cancer for over a year and she has been doing ok all things considered. she just want to be able to enjoy her daughters wedding but at this point we are not even sure what state she will be in next month. she was at here treatment today and complained about her hip hurting her and they nonchalantly say "oh it might have spread to the bones" FUCK THIS SHIT FOR REAL. i'm so fucking angry right now , i swear i may punch someone in this office if they fuck with me today.

YOU FUCKER

oh no .. :(

this is just so fucked up. 2013 not shaping up to look any better then the last year

I'm sorry :(

this has been a tough fucking week.
she's currently in the hospital with little hope of getting back out. radiation treatment starts today with hopes of just alleviating some of her pain due to the cancer in her bones. they have already discover tiny fractures in her spine and hip. we are probably going to cancel our wedding that was set for the end of the month. It's astonishing how quickly things have deteriorated in the last couple of weeks.
i just had to vent a little as i'm here at work while my fiance is at the hospital with her mom and giving me updates as things seem to change by the hours.

dates such as this hit hard.
i miss my best friend more now than ever before.
i miss my wife,
i miss my happy life.
i miss the laughs.
i miss the arguments.
i miss the stress.
i miss the warmth.
i miss the control and direction.
basically : i miss you tiina.
fuck you cancer.

<3

so so sorry for your loss mark e. no words can help but love and strength to you.

I can only say the same. Sorry, love to you, mark and carne.

I'm so sorry Mark.

my thoughts are with you guys carne and mark.

thinking about both of you

my uncle, who's 52 or 53 and just 2 weeks ago got an autologous SCT for multiple myeloma, was just transferred to the ICU with what sounds like a pretty bad nosocomial pneumonia. dammit

best of luck to both of you

sorry k3v. I can esp relate since i'm gonna go through that procedure very soon.

horrible to hear of this, thoughts with you guys.

can only echo what's above.

today my wife and I saw a pretty young woman stand up in front of a small group of people (we were in the front row) and announce that she had about 3 or 4 weeks to live

she said she wasn't afraid, or even sad, but grateful to have found a resolution one way or another

then she cried

it was beautiful, it WAS sad, and it was terrifying. never lost anyone this way myself but such was the felt pitch of empathy...a pre-echo, a warning...this death without choice nor reason looms before every door now

I've had more people taken from me by things other than cancer - MS, strokes, heart disease and murder. Each death has the capacity to be uniquely horrible.

My love and sympathy to anyone currently grappling with mortality. Fuck cancer (and the rest).

feeling so beaten down by all this. just trying to be there for my fiance who has been so damn strong though everything.She is my freaking hero.

r.i.p. beautiful lady
mother I never had. Love you

Damn. So sorry.

condolences :(

jesus, carne : ( my best thoughts

I'm so sorry, man... take care of your fiance, and take care of yourself.

sorry for your pain, c.a.

Yeah we were able to have the wedding and my mother in law attended in a wheelchair but we had a great time and she was so happy. I believe that's all she was holding on for. As soon as all the family left back to Spain and everything was over she was ready to go.

My thoughts are with you, c.a.

i'm sorry c.a. :(

my mum has an appointment tomorrow for further investigation on a breast lump that she found two weeks ago. she's had breast cancer twice in the past,
last time was about ten years ago though so we thought we'd put this shit far behind us. of course it could be anything and everyone is trying to keep her spirits up, but she's really pessimistic about it and we're all living under a cloud at the moment. will be good to get tomorrow out of the way so we can just get on with whatever it is we need to do...

My sister passed this morning. Her son is 4.

Fuck cancer forever.

Love you Kath.

terrible. so sorry.

fuck cancer. my condolences

fuck this scourge of the human race.
seriously ...
to c.a, nick b and f.g
... you have my heart felt sympathies ...
bottom line : cancer is evil.

My condolences to you, franny glass.

The 3-year old daughter of friends of ours was just diagnosed with leukemia. It feels perverse to say that the good news is that 80% of patients treated for the type she has stay in remission.

My friend, who is a friend of the family too, has breast cancer that's spread to the lymph glands. She has a toddler son. Fucking hell.

Ms Mac's mother goes in for a week-long stay today, surgery wed or thurs. Early detection, doctors v optimistic, but yknow, fuck cancer. Her dad's in remission two years but still dealing with aftereffects so doublefuck cancer.

Good luck with that dmac. My mother had to have a mastectomy two weeks ago, but other than an infected wound, she seems to be in the clear for now. Hope things go well for you too - if the doctors are optimistic, tap into that shit I say.

thinking good thoughts for her, dmac

12 months on.....

just how do you mark such an occasion.

both of my boys are taking the day off school.

we are going to the place where the ashes were spread, then going for a lunch together ..

both boys are showing little need to anything more.

do i make them be 'more respectful' of the situation, or, do i allow them to move on and not dwell on the past like their old man ...

f*ck ..

after the death comes so much stuff that you never anticipate in your normal day to day world.

much love mark

do i make them be 'more respectful' of the situation

What would you see as the benefit of this option?

exactly, that's my point ..

a quiet day together, just hanging out/going to the place where the ashes are/pub lunch/talking re memories etc = perfection ..
any more and i think, it becomes too intense and unnecessary.
but given that this is my first time re this kind of groove, i worry that my laidback attitude could be seen as not doing enough ...

hence the worry/guilt.

The kids reactions will change when they're older. For now, do just what you are inclined to do, and no more. No sane person would ever fault you. The first year is a milestone, but not the only one.

i think you're wise to let them set the tempo. plasmon otm, it will change with age.

An old friend and totally sweet guy just died of pancreatic cancer. He'd been sick for 4 years, tried everything he could. He really, really wanted to live. He was only 52. Another good friend, in his 40s, found out about two months ago he has brain cancer. He's already had surgery and is finishing up a round of chemo and radiation. His hair is falling out. He just got married last year.

Love and peace to all.

"He was only 52"

fuck fuck fuck.

cancer is evil.

so sorry to hear of your troubles tipsy ....

i genuinely believe that the evil lump has moved down a generation.

i dont recall any of my friends parents dying of cancer when i was a kid, and yet, my youngest (9), is perfectly understanding of the situation ...

so horrible, so sad to hear about that. Hope you are doing okay.

I am rly feeling the sentiment of this thread lately

I have a friend in Atlanta who had cancer a few years ago, and then beat it and got better, and then it came back, and then he went to the hospital, and then he fucking died. I found this out because I realized we hadn't talked on Facebook in a few weeks (which we did pretty regularly) and found a wall full of RIP Kyle messages. I'd known him thru online for years and got to stay with him for like a week when I was travelling a few summers ago; we totally hit it off and he had the coolest little dude of a son and an awesome wife and I was planning a trip back down to Atlanta this summer to see him.

This is the second friend (like not acquaintance but actual *friend*) of mine to die this year. It is seriously bumming me the fuck out.

fuck all of this shit so fucking hard, what the fuck

tipsy and mark and I and y'all should go forge a new plane of reality where cancer is not permitted to exist.

Aside from something happening to my children, the cancer coming back is the negative thing I think about the most. "He beat it, got better, got it again and died." That's a common refrain.

My oncologist says if this happens again the same way, he's going to take out the whole thing instead of waiting around for a third time. I don't know what to think of that.

I totally hear you, Steve. I remember that day, sitting on the throne at work, reading the obituaries and goddam, the hell is there a picture of Jonathan in there for? Everyone has those friends that after awhile, you only see every so often, but you don't expect the friendship to end on Page 4B.

And I hear you too, Mark. It's just that there's not a damn thing i can think of to say to you right now. No one will ever replace her, but there are people all over the world with thoughts of you and your family in mind. Who knows if that means anything, but there's that.

tipsy and mark and I and y'all should go forge a new plane of reality where cancer is not permitted to exist.

― hoda nkotb (Stevie D(eux)), Thursday, April 25, 2013 9:25 PM (1 hour ago) Bookmark

that is a genuinely really beautiful thought and i hope you guys can make this happen in a place large enough for the rest of us to live in as well. this shit scares me! kudos to anyone with the personal fortitude to live through it on a super personal basis.

Until now, ppl under the age of 40 getting cancer has been, like, a challenging but ultimately non-threatening thing in my mind. Like, sure, you *could* die from it but you are young! healthy! etc! of course you're going to get better; why wouldn't you? Apparently that's not quite the case.

Oh, no. While cancer is mostly a disease of aging (eg. the median age of breast cancer diagnosis is 61), neoplasms in the young are more aggressive (the proliferating stem cells are more active, start with longer telomeres, and respond less to normal senescence/apoptosis signals).

Most cancers are seen in the aged, where they have been slowly doubling and possibly metastasizing from to other tissues for around a decade before they reach a diagnosable sizes of about a millimeter. That long run up is one reason clinical trials of breast and prostate screening in older people has such disappointing results (screen 2500 women yearly for a decade, terrify 1000 with a false positive, needlessly treat 5-15, to prevent one breast cancer death), and some guidelines are a-changing. The screening catches too many cancers that won't ultimately kill, and can't detect the more malignant cancers (that have commonly already metastasized) early enough.

To be diagnosed in the young, any cancer must have had a much faster doubling rate, and is naturally way more malignant.

recommendations about breast and prost

n the elderly, cancer generally has been present, growing exponentially at a slow doubling rate of around once per 90 days, for over a decade, doubling roughly once every 90 days, before reaching diagnosable size of about a millimeter.

The young haven't

Its one reason the ACS has been changing its recommendations regarding breast and prostate screening (it doesn't catch the really malignant cancers early enough, and catches too many of the ones

Ignore the last 4 lines there. Forgot to scroll down.

well, for all the concern, that was a lovely day.
me and the lads went to the place where we spread the ashes ..
we sat/chatted and then walked through some gorgeous countryside.
then headed to a lovely pub for food etc.
both boys were chatty and relaxed.
best day i have had in a long long time.
could not have wished for a better way to celebrate the life of the person that created my perfect life.

Good to hear, sir. Best as ever, always.

hi mark, happy for you that it went so well, but at the same time it's heartbreaking that such a day ever came to pass for you. sounds like you got a real feeling of togetherness out of it, glad that there are some very real positives for you to find solace in.

sorry if that sounds a bit overfamiliar btw, but i think that anyone who reads this thread knows what a nightmare you've been through and is rooting for you and yours for the future

re togetherness : that's actually spot on nickb ..

after all the evilness of the lump, it has taken a while to come to realise such simple truths, but hey, would like to think we turned a corner today.

well, i most certainly did.

xpost : behave re your concerns re being overfamiliar ! i would not post here if i were worried re such things ..

Hi all

Surgery over, drs happy, results whenever, we'll take the interim as a happy gift

Best wishes mark. Survive as a unit before worrying about meta consequences im

Surgery over, drs happy, results whenever, we'll take the interim as a happy gift

:-)

.....

genuinely hope things go to plan ..

Thks mark.

With genuine admiration with yr having dealt with what you have

Mark e, best wishes to you and your boys. I'm so glad your day was nice. I have learned that celebrating a person can feel wonderful, even when their absence still hurts. My sister's funeral was one of the most positive experiences of my life, in addition to being the most terrible. A very strange mix of feelings.

Have resolved to volunteer for the Cancer Society when my babies are a bit bigger. They were a wonderful source of support for my family through everything, and anyone going through this shit deserves as much help from as many people as possible.

A couple of Mondays ago I learned a very close family friend, Julie, (she lived with us when I was growing up and was like a second mom) died from the lung cancer she had been fighting for about 6 months. About half an hour before I got that news I learned my best friend's nephew, who has been fighting leukemia for 10 years (first diagnosed when he was 5), made a completely unexpected recovery shortly after the doctors had finally admitted defeat. So it was an evening of oh my god Noah is well there is hope yayayayay!!!! to oh my god Julie is dead.

A funny story about Noah - when he got the all clear all he wanted to do was get his drivers license . So his dad took him to get his learners permit. First thing he did? Drove the car straight into a wall. He was fine of course but damn chill Noah.

All clear iirc

oh that's good news dm, glad to hear it

Very!

I'm dutifully assisting a mother-in-law's request that she receive home care through the late stages of her cancer even though it means mopping up stomach acid from g-tube holes and changing a diaper. Every time we bundle her up and take her to hospital for some new complication she seems ready to be admitted to palliative, which would be an enormous relief and a huge benefit to her health instead of having her cared for by her talentless children. Then, they apply the right cream and/or install a new thing and she "rallies", imagines she'll be walking again by the next morning and we're lifting her back into the front seat, taking her home. Happily she's still got her sense of humour and it's pretty easy to get a smile out of her even in the worst of times. Tough lady.

She died yesterday. Happily she settled down and didn't keep up with the Unwise Rushing Around and died peacefully and intact instead of some rupturing sepsis bullshit. Lots of family here. I can't get out of bed. I was only looking after her two days a week but my bf was doing it full time, a superhero.

I'm so sorry to hear that. my thoughts are with both of you. <3

Best indeed to all, and my deep condolences.

Grisly but lol: my favourite cousin, a nurse, 70, remarked "happily we don't have to worry about a drawn-out cancer with ~you~. You Palletts are gifted at dying. Aneurysm *pow*! Heart attack *pow*! Out like a light! Very respectful." <3

Thanks for the kind words. Feeling stunned but ok. Worried bf will crash next week so I'm making sure he's got massages and madeleines

both v essential

My condolences, goon.

condolences to you and yours, dear fgti.

^

mother in law (pancreatic cancer) is now in, idk, I guess you could say the home stretch. Pancreas has stopped working altogether now. She can digest juice but is unable to digest much food at all without throwing up or severe indigestion. Her oncologist gave her a range of options, but she has decided she doesn't want to go to the ends of the earth to fight it, or go through rounds of surgery or chemo, she'd just rather see out the rest of her days in relative comfort, as pain free as she can manage for as long as she can manage.

it is probably the most at peace she has seemed in the past year that she's been going through this. and it's definitely reassuring to talk to her and know that she knows what she wants, and she is happy to help anyone around her come to the same understanding. she feels wise now.

but but but...now i have to move through the selfish process of ME being able to let her go. I think I am, in many ways. I am not grieving her yet, I'm just full of sadness that there will officially now be an End. With a capital E. Even if I don't know when it will be, just knowing that she knows, and that I know...it means I have to confront a lot of things that I haven't faced in many many years. And honestly, big fucking deal boo hoo me 'dealing with' 'letting her go' as if my allowing her to go has any bearing on it.

She has loved me as her own daughter from the day we met, for the last 14 years of my life. In many ways, I am losing a mother...she has been my surrogate all these years away from home...there's no way for this not to be hard. So I am just trying to accept that it is hard, but it is worth it, that this time is still precious and meaningful and to be present, to enjoy that she is lucid and loving and talkative.

i just...life, man. it's some heavy shit.

I'm so sorry, VG.

Your feelings of loss are valid and entirely okay. They aren't selfish! Losing someone you love is so fucking hard and it is okay, necessary in fact, to grieve. Maybe you want to be strong for your mother-in-law and your husband, and that's a very kind thing to do, but if there's anywhere you can come to talk about how this loss is hard for you, this is the place.

oooh VG :(

this is my big 'what if .. ' scenario.
bh went through chemo/surgery/chemo, for no gain at all.
in fact, there is a chance that the surgery sped up the end game considerably (not to mention the side effects of the chemo), so i live with a massive 'what if she had said no to the chaos, and lived a normal life until the evil lump took over' groove hanging over me all the time.
so, i totally understand your MILs choice.
should i ever find myself in a similar situation, i would like to think i had the strength to make such a decision.
but damn, that's a heavy one as a family to deal with.

adult life is hard work.

This is some rollercoaster shit, yo. some days good, some days terrible. She sounds so frail now, every time I get off the phone I have a little cry. The only way to talk about how I am feeling is to talk about this hour right now. I'm finding that on the days where I wake up full of sadness, those are the days when I need to bury myself in a fantasy novel for a few hours. That's about the best therapy I've found next to long quiet hugs with Mr Veg.

Her nausea is getting worse. my brother in law was able to get her set up with a marijuana vaporizer, to help stem some of the nausea during the day, and to help her a little with her appetite, so she can eat least eat a bit of something, even though her digestion isn't so hot anymore. Mr Veg visited with her this afternoon, and I asked how she was and he grinned & said 'Stoned'.

A positive that has come out of this whole experience is that I have for one of the first times in my life been able to go to my own Mum for advice and comfort, as a daughter, admitting defeat and asking for her love. She nursed her own mother when I was a teenager, and she has been so supportive and has so much good insight, it's been really nice. I always tried not to be defenseless with her in the past (long story)...but me needing her and her being able to give me what I need has been a really wonderful thing to experience.

Apparently my grandmother already had cancer while her husband was suffering from terminal cancer. She died last week. She broke her arm last year. They discovered it was due to an advanced form of kidney cancer. She immediately talked about euthanasia. In the end she opted for palliative sedation. The loss is very... conflicting. I never had a good relationship with my grandmother. (All *assholes*, she the worst of all, largely due to her alcoholism and the abuse she inflicted on my dad.) It has been a rollercoaster for me. In the past two years losing two grandparents. But y'know they were old, at least they had years.

And still FUCK CANCER. Awful awful disease. But one thing I am now convinced of: talk about euthanasia and/or palliative sedation early on. Do it. Look into it. Noone wants to suffer.

Oh Nath I'm so sorry :-( Gecondoleerd.

Oh Nath...I'm so sorry.

I'm still wrestling with the realities of palliative sedation. I think that's on the cards for my mother inlaw, this from you Nath makes me feel less conflicted about it. I know that you are right.

I don't know if I'm going to have my mother in law for much longer. It seems like maybe a matter of days now. she's fading so fast. I hate to clog this up, but i don't know where else to go to let these things out of me. I wrote a whole bunch of stuff down and if it's okay I'm just going to put it here to get it out of me.

I Am A Child

I was 15 when my grandmother passed away. Growing up, we had been very close. Many weekends I had spent at her house where she taught me how to sew, how to bake, how to do crosswords. We played scrabble together, watched the matinee movie on tv together for Saturday lunch. If I stayed long enough she would take me to church with her on Sundays. She always assumed I would be bored, and tried to get me to go to Sunday school instead…but her grandiose church with the incense and the stained glass windows was what I loved. I didn’t care if what they said was kind of long and boring, I loved sitting in the church with my Nan. It was and still is one of my favorite places. My personal place of holiness.

She had been on dialysis for kidney failure for a number of years, but she got very sick when I reached my teens, and was eventually hospitalized, and that was where she died.

I don't remember a lot of her illness. Nan changed a lot when she got sick. She stopped wanting to read, or do crosswords, and didn't seem very interested in talking much...and one of the last times I visited her, she didn't know who I was at all, and was talking to me about people she went to school with. It scared me enough that no-one really expected me to see it worsen.

I think it was a function of my age that I didn’t really think about her dying. And if I did, I didn’t have much of a logical connection to what that really meant, how that would feel. But it hit me hard, like a punch in the stomach, when they lowered the coffin and it made its way out of the chapel to the crematorium. I had a visual cue that told me I wasn't going to see her again. The realization hurt so much, and scared me, as abrupt and painful is someone had just torn off my arm.

The terror I felt at my grandma suddenly not existing anymore stayed with me for a long time, manifesting into a lifelong fear of death and dying that had started when I was very young and became a fear that could wake me from my sleep with a full-blown panic attack. But that was a thing I tried to keep inside. I didn’t know how to make it stop, or go away, so I just tried not to think about it.

Flashforward to 37 year old me.

In an unlikely but wonderful turn of events, over the past 10 years my mother in law has slowly been filling in the hole that was left after my grandmother’s death.

For one thing, she was roughly the same age as Nan. Her personality was completely different to Nan’s – Nan was a very proper lady, not prim or even stern, but just … very even. Practical and no-nonsense. Mauraid was effusive, full of hugs and bursting to overflowing with love and praise for her own immediate family, as well as me, the interloper. I wasn’t a stranger with Mauraid, I was her daughter. But her age afforded me the same gift of wisdom and experience that my Grandmother had. I have a voracious appetite for knowledge and unfettered curiosity - Finally, a new person who had been places, seen thing, who could fill my bucket with new stories of a different life, a different childhood, new other worldly experiences.

We played scrabble together. We talked about the books that we read. We watched movies together. And we shared a lot of time together. She drew me into her family and loved me like a daughter, and I relished the warmth of having that kind of love so far away from my family.

The greatest gift we shared was when we began to go to church together at Christmas. Neither of us regular church goers, but this time together was us going to say hello to the people far from us – I could commune with the memory of my grandmother, and Mauraid could commune with her brother who had passed a few years before, and her mother who had died when Mauraid was a young girl of 21. That was the time when we were closest, and I felt like I had gained a new power, a power to harness my past and steer it in a new direction.

Time is a wheel. And our wheel of fortune took a turn for the worse. A year ago, my mother-inlaw was diagnosed with Stage 3 pancreatic cancer. The prognosis was 3 months. At first it was a blow, for her, for our family, everyone. I feared the worst and struggled not to grieve her daily. Yet, even through the wheel had spun us down to the depths, it slowly was spinning her, and us up out of the bad. Undertaking a strange and rather radical homeopathic therapy, my mother in law surprised her doctors, and us, and lived for another year after her diagnosis with no growth in her tumors.

The year lulled me back into the routine of our life, and I got used to the idea that we might have her around for a while, despite the initial scare.

Oh, cruel fortune.

We all tell ourselves stories so that we don't have to face the inevitable truth. But the truth had arrived. Mauraid’s tumors were now growing, her pancreas was obstructed, and the wheel had again begun turning downwards once more. Much as I wanted to hide from it, the truth was here and bearing down.

Terminal stages of an illness causes a remarkable shedding of niceties. Not only in family, but in the patient. At least, that’s what I have seen in my family. Mauraid most noticeably. Where once she had not wanted to talk about what would happen if it got worse, where the knowledge of the growth inside of her had kept her awake at night and scared her to tears, she was now steely and resolute in her acceptance of what she now saw as the inevitable end.

My denial of the truth was now seeming almost quaint, childlike…and kind of sad. The more my world was challenged, the more flimsy it felt…and the more lost I felt. I couldn’t hang onto this idea that Mauraid was going to live forever. Yet in spite of what I could see happening right in front of me, I was still clutching tightly to my fear of death with both hands.

I've watched her get more and more frail...more and more tired...She can no longer digest any food. Her eyesight is worsening. I can hear her teeth when she talks. Physically, it seems like she just melts a little more every day. Conversation grows increasingly difficult. She trails off in mid sentence, her mind like tufts of dandelion seeds on a windy day.

Where at 16 I was on the fringes of my grandmother's last days, now at 37 I have a front row seat. I have sat with her as she as she told me plainly, with overwhelming love how much I mean to her, her hopes for my future. She has talked openly about how ready she is for her imminent end while gently holding my hand, imploring me not to be sad as my tears of fear and denial fell freely.

With Mauraid now, I am again a child.

When it first became clear that Mauriad was heading towards her last days, I wanted to pull the emergency brake. I wasn't ready, I needed more time to prepare for the truth. But life, as we know, and death, are just not like that. You don't get to choose what you're a part of. You can only choose to participate or withdraw. I love her too much to withdraw...so, here now I find myself walking into the water with her.

Every step that I'm taking with her fills me with terror, dread, fear, knowing that I am walking towards an eventual end where she is no longer walking beside me. I cannot shake that same terror I felt when I realized I would not have my grandmother anymore. I am full of selfish fear of letting go. But it’s a whole different thing when you know full well that your fear of letting go is completely futile. The heart wants what it wants, and Mauraid wants to go. And go she will.

My friend's mother said that working through suffering together is one of the most beautiful parts of being human.

Seeing the fraction of what I have seen, I know that to be true.

I have seen what strong stuff this woman is made of.. In her final days, she has proved to be stronger than the sum of all of us. She is ready. Seeing unwavering resolve every day is challenging my fear of letting her go, like grease slowly working its way into a long-rusted hinge.

I realized that as much as part of me wishes that I could detach like my 16 year old self and hide from the grownup realities of death, I'm mostly glad that I'm bearing witness to these adult experiences. I don't feel any more grownup for having seen them, I certainly don't enjoy them while they are happening, but I am beginning to understand that maybe my fear of death is more an echo from my childhood, a last remaining vestige of youth; the more time I spent with Mauraid in her final days, the more it seems to me that age and a certain kind of wisdom turns that childhood monster behind the closet door into a new brightly-lit doorway out of the darkness...a place where death becomes a well-lighted passage out of the dark, sad, lonely wilderness that is terminal illness.

Wow VG, you brought tears to my eyes. That is one of the most beautiful pieces of writing I've read in a long time.

Much love to you and your family <3

what a brilliant, and very heartbreaking, post VG.

this hit hard.

When it first became clear that Mauriad was heading towards her last days, I wanted to pull the emergency brake. I wasn't ready, I needed more time to prepare for the truth. But life, as we know, and death, are just not like that.

this is my world to the power of x.
1 year on the speed of the loss of lucidity still hurts as i was denied the chance to say some final words of love.

cheers for posting this VG ...

Coming from you that means an awful lot, mark. Thank you :)

Mother in law passed away on Thursday night.

I visited her on Tuesday after I posted the story above, and she had completely deteriorated -- they had a hospital bed in the room, oxygen machine, and she on pain meds so pretty much out of it, but she was still breathing regularly. It was a horrible shock, but also the flag that we didn't have a lot of time left with her. We got a phonecall Wednesday morning that she was only breathing once a minute, and we drove right over. That morning we all thought that we would be saying final goodbyes by lunchtime. We stayed til 10pm that night, she had made no change. We went home and tried (and failed) to sleep, and came back first thing the next morning. Still no change. The hospice nurse visited, and said based on her vital signs she would have said she only had maybe an hour or two at best...the fact that she'd been holding out for 36 hours that way was unusual. All we could do was keep up the pain meds so that her breathing, such as it was, wouldn't become labored, and that eventually whatever was keeping her ticking along like a metronome would eventually let go. We left that night at 9pm...and at 11:50pm we got the call that she had finally passed.

Even though we knew it was coming, it was still sad, as expected. But going through this whole experience, it was about the nicest kind of sad I've felt, in that she wasn't in any pain when she did go, that we had all been together at the house with her, and taking care of each other while we were taking care of her because there were huge stretches of time where there was literally nothing we could do except, just be together. And as a family we hadn't been together like that, talking, laughing, sharing stories, hanging out, for over a year. So it was a strange kind of gift that she gave us.

But she left us some incredible memories too. That woman kept everything of sentimental value to her, from Mr Veg's first ever preschool artwork, her own baby booties and baby blanket, boxes upon boxes of photos, a handwritten 'memory book' of stories from her childhood that she'd been filling out over the past couple of years...and the greatest treasure of all, my brother in law last night found a stack of love letters, from my father in law to her, written in 1964 one month after they met, up until a few months later when he proposed to her and they married. They're so beautiful and simple and full of life and love and youthfulness.

The saddest now is going to be helping my father in law. He has dementia -- not so bad that he doesn't know where she is, but we have to give him a list of 'events' to tell him where she is now, what's going to happen to the ashes, when the funeral will be, etc...and he has to consult that list many many times throughout the day to keep his compass pointed in the right direction. The stress has rattled him to his core. Occasionally he gets so anxious he forgets that she's gone and we have to tell him again, or he'll forget completely where he is for a moment. It's so hard for him right now. To have him look at you and say "I never wanted to see this day" with tears in his eyes is just, it breaks my heart.

seriously, fuck cancer.

I'm so sorry, Veg. Love to you and yours.

oh vg ..

<3

fuck cancer.

<3

Very sorry to hear that Veg, all the best you and your family <3

Heartfelt condolences to you and your family, VG.

In some ways having the time time to say goodbye is better than someone being hit by a bus with no warning. Not a lot of ways, though; fuck cancer, and my condolences to you and yours, VegemiteGrrl.

I'm so sorry VG.

Sorry to hear, VG. Fuck cancer and fuck dementia too, since you mention it.

Love and hugs to you and your family VG. What you describe was very similar to my sister's passing; tragic, and utterly devastating, but containing pinpricks of solace here and there. I'm glad it was as positive as possible for her - pain-free, peaceful, surrounded by family, etc. Your support for your father in law will be so vital from now on, and you are a legend for being there for him. Those love letters sound beautiful.

Fuck cancer and fuck dementia too, since you mention it.

^ I fully endorse this post. Sorry to hear your bad news VG and wish you the best with your FIL.

thx guys :)

so, one year on ..

yes, life is easier.
the never ending darkness has subsided.
however, that does not take away the never ending impatience with the needs of being a single parent.
i mean, seriously, can someone pleas please please answer the 146 questions that mk2 asks every day..
it's exhausting.
oh, and scary and unexpected discovery that i have become a threat to all married couples in my local vicinity.
i.e. a few drinks last week ended up with an old friend laying into me as he thought i was coming onto his wife.
the fact is that she has recently recovered from cancer, so i was complimenting her on this aspect of her life.
next thing i know, her husband is full on in my face and threatening all manner of chaos ..

adult life sucks.

adults suck. they don't have to suck you down with them.

good wishes sent your way.

jeez talk about piling on

threatened adults can go fuck themselves

Got an IM this afternoon from an ex who I'm still friendly with...

She has stage IV brain cancer rapidly spreading through lymph nodes and bones, her Dr. told her she has 3-4 months tops.

What do you even say? I tried to stay positive but man do I feel incredibly miserable.

Hey Mark, I hadn't paid much attention to this thread in the beginning because frankly...it's a hard one for me because I've walked a million miles in your shoes. I have the answers to those 146 questions...but they never seem to make sense.

It gets better.

so there i am chillin' in the west wing to some old school rawkus grooves feeling good.

i walk into the tv room to find mk2 watching some old home videos that bh had filmed.

the sound of her voice and bammmm.

impact : massive downward groove.

i hate unexpected triggers.

18 months on and this shit still hurts hard.

time for a top up and an increase in volume.

aw mark :(

i went into my deleted voicemails and found one from my mother-in-law, and I've kept it so I can hear her voice

i feel weird abt it but I dont like just ~going on~ with life, not having some tangible part of her still with me.

:( Take care, Mark.

all ok now ..

a year ago i would have fallen into a dark hole for days, whereas now, i can cope ..

was just the trigger that hit ..

never expected it given the 18 months ..

My sister's birthday today, the first since she passed. She would have been 40. My parents had her partner and son over for birthday cake.

I live in a different country so I couldn't be there. Settled for having spaghetti for dinner - her favourite, and what we always had on her birthday.

My mum has just got a diagnosis of grade 2 invasive lobular breast cancer last week :( My step-dad is planning to re-mortgage his house to pay for some private treatment known as Targeted Intraoperative Radiotherapy. I am phoning some UK private healthcare companies tomorrow to find out the cost etc. Anyone know anything about this type of treatment? It isn't available on the NHS but seems to be more commonly used in Germany + the USA.

http://www.ncbi.nlm.nih.gov/pubmed/23037497
http://www.ncbi.nlm.nih.gov/pubmed/24224997
http://www.ncbi.nlm.nih.gov/pubmed/24225155

Concept seems to be limiting radiation exposure (and side effects thereof) while producing equivalent benefit. Evidence doesn't look overwhelming either way. Don't think it's standard of care even in the US given the way this evidence is reported.

What's his rationale for wanting to pursue this option?

They seem to think this is the best treatment, based on reading an article about successful trials of this treatment, cut out of a tabloid newspaper and passed on to them by a friend. That type of solid medical research! I think the 'one-stop' aspect is appealing to her and she is terrified of how much the intensive 6 week chemotherapy is going to hurt.

couldn't you get another oncologist's opinion about this before they proceed with it?

like a third party who doesn't have any institutional/emotional/financial investment in providing or not providing this new treatment?

you and your family have my sincere best wishes anyway, whatever treatment is chosen

^ all of what he said. good luck with everything dsp

It's not meant to be an alternative to chemo (which aims to treat distant micro-metastases) AFAICT, but to whole breast irradiation (which treats local/regional disease, in the breast and/or axilla).

Many cases of local breast ca are treated without chemo, or with long-term hormonal treatments like tamoxifen, which isn't what most people imagine if they think of "chemotherapy".

Whole breast radiation can go on for weeks, so maybe that's what they meant. Don't tend to think of radiation treatment as being very painful, but experiences vary, no doubt.

Does she have an oncologist she trusts? AFAIK NHS paid docs would have no financial interest in steering her one way or the other.

Thanks for your input/well wishes Nilmar,Nick + Plasmon. I am getting the feeling that this TARGIT thing is not as widely accredited as she has been led to believe I am still waiting for two private hospitals to return calls and their call centre staff had never heard of it, one of them was googling it while we talked. Also I think she is making some wrong assumptions about the treatment she is going to get because she referred to it as '6 weeks of chemotherapy'. Just by chance there is a program on the beeb tonight about bogus medical companies ripping off cancer sufferers. I think her relationship with doctors are just as bad as mine Plasmon, nod along, make eye contact and smile politely and phew.. glad that is over. The only reason they caught the cancer at this stage was through a screening program that was being run in the area and a friend twisted her arm to attend, luckily.

Hmm. There might be 6 weeks of chemo as part of the treatment plan too, but that wouldn't be replaced by TARGIT.

It's sometimes reasonable to forgo chemo if the year-by-year risk of metastasis is low, the benefit is limited, and/or the patient's general state of health and overall function increases the morbidity of treatment. I would think grade 2 disease would make them that much more likely to recommend a full regimen of treatment.

The oncologist should be willing to meet with family (along with the patient) to discuss the options, especially if it becomes clear that she doesn't fully understand what she's being told.

Hope it works out OK, best wishes.

This TARGIT treatment has not gone past trial in the UK, there is nowhere that does it. Just enquiring about it led me to a remarkable lady from a private company in Liverpool who gave my mum a good pep talk free of charge and told her she is lucky the cancer has been found the opposite side of her heart. She is a top girl who went way beyond what she is paid to do and cheered my mum up without soft-soaping anything.

That sounds a bit wank, but she really cheered her up. More than any of of us could do.

nothing is wank that makes people feel better when they're going through this, it's very tough and sad and frightening. my very best wishes to you and your mum.

estela otm

There are so few people who can pull that off really well. Hooray for help from unexpected but effective places.

Just got off the phone from my mother and she is better than last week. She has chosen a mastectomy, rather than targeted surgery and is feeling happy. I am so glad she has cheered up, because last week she was so fearful. It sounds like the cancer can be dealt with at this stage with one removal. I told her, you could cut anything off me right now, I wouldn't give a shit. Anyway we had a good laugh.

glad to hear she's doing better :)

wishing the best for her, DSP

all the best

Indeed!

And fuck you again for taking someone away too soon, cancer, and fuck you again.

http://blogs.dallasobserver.com/dc9/2013/12/benjamin_curtis_rip.php

neds on the money.

fuck cancer.

saw Philomena today

went into thinking the lady would probably remind me of my Mum and that it'd be a bit sad/funny and quite a nice time.

except that the character of Philomena looks and behaves a lot like my mother-in-law.
to the point where when she knelt beside her bed in her nightgown to pray, I think I audibly gasped 'oh no' and started crying quietly to myself

I wasn't ready to cry so much again. It felt good but it really shook me. Funny how you think you're 'okay' but your whole foundation is shifting sands, all the time

fuck you cancer, fuck you for taking away that sweet woman

sorry for that VG, loss can be unpredictable like that

one of my best friends, former boss, amazing dude just got a diagnosis (yesterday) of 4 months to live, possibly a year or more w/chemo

:(

oh man, that's fucking rough. sleeve, VG - hugs to you both

My mother is having a biopsy on a mass on her lung that she's had for well over a year yet chosen to ignore until this point. Scary shit.

Biopsy is tomorrow morning but I don't know when the results will be in.

thinking of you

sorry enbb, waiting for results is awful and scary. best wishes to you and your mom and your dad.

^

let me/us know if you need anything

Aw thanks guys :). Will keep you posted.

Tbh I'm glad she's finally consented to having it done because knowing has to be better than not knowing.

Funny how you think you're 'okay' but your whole foundation is shifting sands, all the time

this.

enbb : i totally understand the denial of knowing aspect.
should i ever end up in a similar situation, i have no idea how i will approach things.
fingers x'd the results are in her favour.

Thanks, Mark.

yes, fingers crossed ENBB. Waiting is hideous.

waiting is a massive part of the world of evil lumps.

your life becomes a series of waiting experiences.
it's quite literally life draining.
never have i felt so useless/helpless as during those periods of 'waiting'.
even now, years on, i feel a mass of guilt about the time wasted while 'waiting', but when in that place, you are not really in the mood to do anything else but wait as so much depends on the outcome that you cannot really partake in any day to day pretence.
as said above, it is truly hideous.

hang on in there enbb .. despite a minimal connection through the wire, my thoughts are with you and yours.

My friend had his surgery today. His wife was just rung by the surgeon to say it went brilliantly... phew!

brilliant news suzy ..

Oh that's great, S.

Good luck enbb. Thoughts with your family.

<3 ENBB. Hope all turns out well.

thinking good thoughts for u, e <3

Thanks all. So I guess because of insurance and billing stuff she has to be discharged and readmitted for the procedure so I don't really get it but they're going home and it'll be done in a couple days. I guess they're doing this

http://health.ucsd.edu/specialties/pulmonary/procedures/Pages/endobronchial.aspx

Which gives real time results so I guess that's good.

rooting for your mom, E

Fingers crossed!

I shouldn't really be posting personal stuff here but my cousin was diagnosed earlier this year with skin cancer. They removed moles from her back but luckily she hasn't needed further treatment tho she has 5 years of tests but hopefully it wont come back and need chemo or anything. Fingers crossed.

hope everything turns out okay for her, enbb.

Fingers crossed for you ENBB. And glad to hear your friend's surgery went well, suzy.

I've been dealing with a tough one here. One of my good friends was diagnosed last fall with stage IV melanoma, has had multiple surgeries, a month of five day a week chemo, and then self-administered interferon 3 days a week. His recent PET came back positive. It's in his blood. They took him off the interferon for now, and he's got a stress and lung test as well as an MRI tomorrow. His spirits are great, and he's doing things he planned like releasing an album and setting off on tour the end of the month. But he knows what the odds are. This all just sucks..

oh shit - for some reason I thought this was on 77. Can a mod scrub the last sentence for me? It's more info than I want on a public post.

oh EZ,even if the post is removed, : ~ hugzz ~

thats some heavy shit.

skin cancer is one of the more terrifying. i had a friend who had a small mark on her thigh, she didn't think much of it, finally (after six months or so) she realized it had been growing and went to the doctor. turns out she had a melanoma. a year later she was dead. she was in her 30s. it all seemed to happen in a flash.

Thanks Mark. It sucks, but he's a real inspiration. He'd get chemo in the morning and spend the afternoon on the skate ramp he decided to build in his back yard. Iron will.

that's amazing! sorry about your friend, ez.

Thanks again, everyone. We'll see. She's 75 and smoked for prob over 30 years in total so I'm not too optimistic but who knows.

EZ that really sucks about your friend but he sounds like an amazing person.

He's a real peach of a young man.

Mod gotcha

Thanks!

hoping the best for all

I just realized that I never posted here after the results but it is lung cancer. She's opting for radiation instead of surgery and we'll see. I don't really know much right now except that it's slow growing and they don't think it's anywhere other than her lungs. TBH I think she'd convinced herself for absolute worst case scenario news so she seems to be taking it fairly well all things considered.

E :(

I'm so sorry to hear that ENBB. I hope the radiation succeeds.

You know how to reach me if you ever want to vent or talk.

Aw, thanks both. My dad's going to send me copies of all the records and images and I'm going to have one of the doctors here (recommended by my boss) take a look just so I know if they agree with the diagnoses and what exactly it is because my dad doesn't really remember the technical terms and stuff so I feel pretty in the dark now. I sort of knew this was coming so I'm OK but it's still worrying, obv.

i was just going to ask. hope you're okay too, such a powerless place to be. stuck for platitudes, just wishing you all positive outcomes for you.

through the medium of shitty grammar, obv

Found out yesterday that mother in-law likely has pancreatic cancer.

So this just happened over here. Mother-in-law's doctor was speaking based on a CT Scan and observable symptoms, but said she thinks it is stage 4. MRI and biopsy tomorrow will confirm for sure. I kind of feel like no doctor would say this preliminarily unless it was already semi-definitive (the dr was speaking to my wife's sister, not my mother-in-law herself, to be clear).

Obv wife and I will be heading to Boston within the next couple of days.

WTF.

damn Jon

seriously
i'm sorry
hang in there, friend -- all hojo all the time

Good idea. Will endeavor to not crack up, see both sides, bend brain and throw off mental chains. May have to go against brief and try to live life in one day though.

That's heavy, Jon. I'm so sorry.

All the best to you Jon and to EZ & ENBB too. This shit is fucked up.

I could use some extra strength but only so I can pass it on to my wife and her sister tbrr

don't forget to keep some for yourself -- you're a person too!

otm

damn Jon, wishing you the best

xpost i am naturally selfish to a sufficient extent that I will do that, believe me.

At least Boston area is pretty top notch for this kind of thing. I guess it is not crazy to predict that treatment goals will be palliative more than anything else :(

ugh, sorry to hear that Jon.

xpost yeah stage 4 is rough

you've still got a long road aheead but I will float this suggestion early, just to put it out there for later on; if you can get your hands on a w33d vaporiser it can really help with appetite, nausea, and associated side effects when things get rough

my husband's uncle was pretty far along, and well into his 80's and even though he didn't use the w33d a ton it at least got him to eat and just kinda mentally relax a bit more.

My mother inlaw was definitely down with it, she had awful trouble with indigestion and lost her appetite almost entirely and the w33d helped her so much -- she would even crank up the Pink Floyd :)

just something for you to keep under your hat til you need it

Good tip. Even though it would be uncharacteristic for her to roll w that (she doesn't even drink or smoke) she has already uncharacteristically agreed to low dose Vicodin so maybe that will be the narrow end of a wedge called drugz.

This whole thing just really isn't filtering through to all parts of my brain yet. Likewise with wife.

it'll take a while

fuck cancer

i am naturally selfish to a sufficient extent that I will do that, believe me.

ok, but i am compelled to note that i don't believe it's selfish to take care of yourself! it's a necessity, like food and sleep :)

hey guys I'm hoping someone has had some experience with this: mother-in-law (yes it is advanced pancreatic cancer, possible liver involvement) is taking oxycodone for the pain, and last night she got paranoid/irrational. My wife is there taking care of her by herself; she said she was talking in circles about this one thing that had annoyed her the day before and couldn't stop. I see that paranoia is one of side effects of oxycodone in the "rare" subheading. The oncologist had prescribed her ativan along with it and I'm guessing that would be indicated at this point, since the pain meds are a must?

My mom died of pancreatic cancer and she was prescribed liquid (oral) morphine and ativan. I spent the last month of her life with her - she was occasionally delusional. She did not spend the whole day in that state however and would snap out of it. The visiting nurse gave us a pamphlet on what to expect and it was all there, laid out the course of everything. My mom read the pamphlet too and when she put it down... man that was rough.

Good luck, Jon

My mom read the pamphlet too and when she put it down... man that was rough.

;_;

Yeah this lasted I guess a few hours and this morning she is her usual self. But she will need a lot of oxys today so I hope the freakout can be avoided. Wife has a call in to the oncologist re meds and is waiting to hear back.

Yeah, no harm in looking at new meds as long as helps the pain.

One time my mom bolted upright in bed and said "I need put in an obituary!" Then slunk back down and was normal again. Kinda lol mostly sad.

Jon, that sounds like delirium, which tends to fluctuate and is often worse at night. Opioid painkillers like oxycodone can trigger delirium (but then, so can pain itself, along with sleep disturbance and a whole host of causes), and benzos like Ativan can actually make it worse (in some cases, YMMV).

They might try to scale back her oxycodone dose if they think she could be overtreated, but that might not be an option, it's a painful disease. There might be some other options for opioids that are less likely to produce cognitive side effects.

Otherwise, they might use a low dose psychiatric medication to try to help limit her confusion while keeping her calm at night. Seroquel (quetiapine) is often useful for that purpose in the hospital setting.

It might be good to ask if a palliative care doctor/nurse could review her case. They're often more experienced than even the oncologists in managing the many challenges of trying to provide effective and well tolerated pain control in cases of advanced cancer.

All the best, it's a tough situation.

For the first week, she had been on Vicodin, which had not produced this effect. After talking to the onco my wife switched her back to that yesterday; so far so good. Only problem with the Vicodin is that the Tylenol ingredient limits the number of them she can take per day.

There is a dedicated palliative team who will be brought on line shortly I am told

they had an in person follow up with the onco today. It was confirmed that the cancer exists in the liver as well. Dr wants to pursue an aggressive chemo course: a "port" will be installed on Tuesday. Lord love a fucking duck.

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...

My thoughts are with you both.

^^^

otm

thinking of you, hoping for the best

The hospice nurses think it might be imminent. Moved up my departure time from this evening after work to right now. Sitting on the bus. It is a bus.

She is more or less constantly sedated now and is also on oxygen and only semi coherent. My wife stayed up at the facility all night with her.

:(

I'm so sorry Jon. Thoughts with you and your wife. You know how to reach me if you need anything at all.

Best indeed to you all and to ENBB too.

Just talked to my wife, her mom is a little more stable this morning. Ill get there mid afternoon. Also, bolt bus wifi does not like Zing.

my thoughts are with all y'all
hope everything is peaceful

<3

thinking of you, jon

oof friend just diagnosed with cervical cancer

get those HPV innoculation shots, girls!

my mother in law is still hanging in there, I should mention. Very skeletal, very weak, not so lucid (though small amounts of the cannabutter are helping with that) but alive. She needs so much help now that my wife and her sister don't feel okay about leaving her solely under the attention of the home when she's awake-- one of the two of them is always there from about 8 am to almost midnight.

I'm at an oncology center for a checkup on my white blood count. Thought it was going to be a regular doctors office but it's a full blown chemo center.. So many gaunt faces :(

sorry about the spammy self-promotional content of this - and i know you all have more than enough problems of your own to deal with - but i'm going to be running a 100 mile trail race this weekend and trying to raise some money for my son's schoolfriend in the process. i did post about her on this thread previously, but she had a tumour in her stomach that the health service here haven't been able to treat successfully and really her hopes now lie in getting on some sort of experimental treatment programme, possibly in the US, which unfortunately is quite an expensive business. she's just coming up to her ninth birthday and has been battling with this for about the last three years. god knows how her family are getting through this, but you just have keep on going i guess. anyhow, just on the off-chance that anyone wants to help by sponsoring me, here's her fundraising page:

http://uk.virginmoneygiving.com/team/NiamhsFund

and again, sorry to bother you all and hope that things are going okay for you folks out there

Don't know if this belongs here or in the curse cancer thread, but since fuck or curse cancer, I'll put it here. Anyone else following the artificial turf controversy? I mean, it's always been controversial, but there's a reported story going around about a soccer coach's serious suspicions that the recycled rubber tires used in some (all?) turf is not only carcinogenic, but actually causing cancer in kids playing soccer, particularly players who do a lot of diving, getting mouthfuls of the rubber pellets:

http://www.nbcnews.com/watch/nightly-news/does-artificial-turf-present-a-health-risk-339753027899

There is a ton of confirmation bias at work here. If you look for soccer players who play on turf and have cancer, you will find a few. If you look for carcinogens near your kids, you will find them. Etc. Likewise, just because something is banned in some places does not mean it's necessarily dangerous (see also: GMOs). But along the lines of GMOs, it is fair to suggest not enough research has been done into the matter, and also like GMOs, it affects so many it is probably worth fast-tracking some more belated research into the matter.

RIP. Nothing about this was fair or acceptable.

I'm sorry, Jon.

fuck cancer

<3 jon, I'm so sorry

Damn, Jon. I'm sorry.

Crushing. My condolences.

yeah, good luck with things jon, wishing you brighter days ahead

Rest in peace. So sorry for your loss, Jon.

Mom passed last night with her five kids and husband close to her in her living room. We sat with her all afternoon and night, but she waited to go until we started watching videos of her on my brother's phone. We watched a video in which she is particularly radiant with joy, picking out a Christmas tree with a bright red scarf wrapped around her head (red was her favorite color). When we looked back at her she was gone. It felt like she had become that beam of joy that we watched in her last moment. I will always love her. She turned two into five but not without suffering. So I'm happy that the suffering is over.

I'm so sorry, Sufjan. What lovely final moments.

My best, Sufjan.

I'm sorry sufjan <3

there's no 'good' way to go but that has to be one of the best

<3 to you sufjan

I'm very sorry Sufjan <3

Very sorry indeed, and deepest condolences.

there's no 'good' way to go but that has to be one of the best

agree to the power of xxxxx with this sentiment.

hang on in there sufjan.

So sorry for your lose.

gh! My autocorrect tricked me. I'm sorry for your loss, sufjan.

sending you love in this hard time

ty, everyone. It was about as good as these things can be.

PARTY SUB!: 500 examples of the hackiest signifier of post-Y2K punk cool, childhood lolstalgia, and "so random" larfs
https://dl.dropboxusercontent.com/u/1484956/party%20sub.jpg
(found while putting mom's slideshow together)

aw

O_O damn son

very sorry to hear about your mom, sufjan. wishing you all the strength—and good memories—in the world.

my mom just found out this week she has breast cancer. it's a tiny, tiny lump and it doesn't have any of the "bad" genetic markers. surgery in a few weeks to remove the lump and see if it spread to any nearby lymphnodes--though the doctor doesn't think he'll find anything. still, nerve wracking for all of us.

thinking good thoughts for yr mom, and you guys. it def rattles everyone in its own way, even when it turns out to be a 'scare'.

sorry to hear about your mom, amateurist. I have 3 cases of successful cancer remission in my extended family. One of these was breast cancer. It is understandably nerve wracking, but an optimistic doctor seems like a good thing.

And fuck cancer because it's been awhile since we've said it.

If you don't mind me asking, did they classify a stage, amateurist?

shit, hugs your way SG (and amateurist)

i'm not sure if they can do that before surgery, but the initial guess was "1A"

yes, good point. I guess I thought they classified my mom's based on scans, but "1A" is very encouraging and hopefully it is true.

I'm using my first post of 2015 to wish a heart "fuck you!" to cancer.
Really cancer, just fuck off already.

It felt like she had become that beam of joy that we watched in her last moment.

condolences and best wishes SG and amateurist

My condolences, Sufjan. I'm very happy she is no longer suffering and she passed surrounded by love. Best wishes to you and your family.

amateurist, best wishes to your mother. Scary but people beat it all the time.

^

I have a fairly large tumor in my breast, after months of tests etc it is most likely benign. The biopsy was gross. Never been through anything like this before. But it is taking forever to get a surgery scheduled so that I can get rid of this thing forever. Disturbing how I might have gotten it. More bills. Even with Obamacare having medical problems is difficult.

Then I can worry about other lumps.

So sorry to hear that you're going through this. I wish there was something I could do to help, I hope you have lots of support from family/friends and are managing to take your mind off it occasionally while you wait.

fuck. get better soon, im losted.

Thanks. I should be okay but I was scared for a bit.

i had a benign (that is, not cancerous, it was still wreaking a lot of havoc) tumor in my throat taken out last year, it was indeed gross and the recovery ended up being a lot rougher than anyone prepared me for. often doctors make outpatient surgery out to be a big nothing, but my whole body was sore and stiff for a week afterward. anyway, this probably won't happen to you. :) i hope you get rid of that thing, and get better quickly.

Our office manager was just sitting right over there close to mid december, though she wasn't feeling great. Cut to last night, she passed away. So fucking quick, and her poor daughter had just lost her father (office manager's ex-husband) a little over a month prior. Gutted for her, mostly.

So the days of one of my oldest London friends are numbered, and I've had to hear about it from another friend because the friend in question has only told a few people due to stiff-upper-lip issues. Fuck cancer with a rusty chainsaw. Just... fuck it.

Aw, sorry to hear that, Suzy.

Just... fuck it.

^ amen to that, and best wishes to all herein

I would call this revive timely but that's too positive

one of my best friends, former boss, amazing dude just got a diagnosis (yesterday) of 4 months to live, possibly a year or more w/chemo

:(

― sleeve, Tuesday, March 4, 2014 2:39 PM (10 months ago)

this dude beat it for a while, but now it is back again. the chemo options only give him a "possible" extension of life around 20% of the time (it's bladder cancer but in the lymph now), and he said "fuck it" to this latest round. I'm really gonna miss him, looking forward to spending some time together in the next few months :(

this dude beat it for a while, but now it is back again.

This. I really fucking hate this. Wishing the best for all.

Not being able to say anything to my friend is excruciatingly difficult. When you've been a cancer survivor for most of your life, as I have, there is also a kind of rolling survivor's guilt that is always present and spikes whenever something like this intersects with life.

yah that's hard, I feel that. my friend is also keeping his latest news private for now, so I can only talk about it with two other people. he'll go public eventually, the last letter he wrote was so classy - "while I have always been conceptually opposed to chemotherapy, 3 to 6 months is simply not long enough for me to wrap up all of my loose ends" <3

My friend has had an interesting week. After two gamma knife surgeries, his last two scans have shown no more brain tumors. However, he's got two small ones on his back and one GNARLY one that grew from quarter sized to baseball sized in about 3 weeks. He had it removed Friday, but not before he posted this disgusting photo to instagram.

WARNING: GNARLY AS HELL: http://instagram.com/p/yxCSejjvWO/

I love how straightforward and honest he's been every step of the way. It's been a huge help for both himself and his friends and family.

Also, if anyone ever has to get Yervoy treatments they do some serious shit to a body, even though they help a ton. After six treatments he has near nightly vertigo attacks and problems with his depth perception, both of which are permanent for as long as he lives. Should make his band's tour next month a bit of a challenge.

This is worth reading.

http://www.latimes.com/opinion/op-ed/la-oe-becklund-breast-cancer-komen-20150222-story.html#page=1

my darling father died the week before last. he'd had cancer for a long time, and during the past couple of months he had been weakening, but still the end came with shocking speed. i arrived in nz a few hours before he died. he wasn't conscious by then; we said our last words on the phone before i left. i visited for ten days in january and had a lovely time with him, which is a consolation. i'll miss him very much, he was extremely kind and funny and clever and self-deprecating. rip my beautiful father.

Sorry to hear that, Estela. The distance must have been particularly rough.

thanks, andrew. i had to accept a long time ago that i could not get there very quickly or easily. i'm so glad i was there in january and have visited him as much as possible during the past few years (as have my siblings.)

<3

sorry to hear this estela - sounds like he passed on some of those traits you praise

yep, and it is surely good that you were there, i hope you & your siblings had some kind words for each other

Sorry to hear Estela.

So sorry for your loss Estella.

Sorry, Estela.

Deep condolences. I've no doubt he was remarkable.

I'm sorry, estela. My condolences to you and your family.

so sorry estela. glad you have good memories to hold onto through this loss

<3

thank you all very much. people have been really kind and it's helped a lot.

All the best for the next few weeks estela, hope you found some solace being around yr family.

thinking of you e.

I'm so sorry Estela and I hope you are okay. I'm very glad you were able to get home and be with your family. Living overseas is horrible when a family member is ill. Hugs.

our sincere condolences, estela - sleeve & laurie

My condolences, too.

estela, all my best

sounds like you were good to each other. i'm sorry he's gone.

e- Much love, and always more love.

thank you, i deeply appreciate all of you for this.

Oh, estela. <3

darling estela, i am thinking of you and sending much love to your fine family.

also, fuck cancer :-(

So sorry, estella.

Oh estela I'm so sorry for your loss, much love x

estela, I am so sorry - thinking of you, wishing you and your family comfort in this sad time.

I'm so sorry, estela.

My love and condolences, estela.

oooh e.

so, sorry to hear about your loss, but you clearly have some fantastic memories, and that's very special.

3 years on from the exit of one evil lump from my world, a new fucker enters.

this time, the emotional attachement is not quite as intense (my father as opposed to my life partner), but due to my experience, there seems to be a demand on my groove for advise for all those concerned.

whereas the reality for me is : no. i do no want to deal with this again. f*ck off and leave me alone.

thanks again, everyone.

i'm very sorry about your father, mark. cancer is so cunning and relentless and its course so horrible for everyone involved. and you have been through so much already, it's just cruel. my best wishes to you and to your father and the rest of your family.

Nothing special to add besides good thoughts to all of you.

My cousin Alan was just diagnosed with cancer of the thymus, a cancer sufficiently rare that only about 400 people a year are diagnosed. Don't know what stage it is yet, but if it's III or IV, the 5-year survivability rate is approximately a coin toss.

This comes after he, a lifelong NYC resident, literally, just moved across the country to Palm Springs, and has no family or support system out there. I may be going out there during his treatment to help him out, take him to appointments, etc.

well, fuck that.

good luck to you and him.

Phil D., if you can do that it will be huge for him. Also hook up with the Cancer Society, I don't have experience in the US, but they should have a ton of resources/staff/volunteers to help out people in those situations. I'm so sorry this is happening.

ugh Phil that sucks

So I'm definitely going to California. I made a deal with work whereby I can work out of our Newport Beach office twice a week, then remotely the rest of the week in Palm Springs. So I'll spend every Mon-Tues in NP, then Wed-Sun with Alan. The rest of the time we're going to coordinate with ACS volunteers to help out. He's already excited because he hasn't even unpacked from his move and can't lift or move anything. And I know from having gone through this with both parents how absolutely exhausted he's going to be during chemo, so I'll be shopping, cleaning, cooking (when he can eat), driving him around, etc.

should be a huge help. awesome that you were able to work that out. best of luck to you both.

Phil you are a good bloke for arranging all of that. just him not going through it alone is a huge thing.

^^^^ otm

You are a wonderful friend and your help will be of immeasurable value. A+++ do you dude, lemme buy you a beer if you are ever in DC!

Phil, you are a champion. I'm so glad you were able to work it out.

Important thing for me is not just that he doesn't have to do this alone but that a family member is there. This side of the family is VERY close, both his folks are dead and his brothers just aren't in a position to take time off or travel right now. And this sounds like a really scary cancer.

God I hate cancer.

BTW if any of y'all live along the route from Cleveland to Palm Springs and want to put me up for a night on my drive later this week let me know! Otherwise it's cheap-ass motels along the I-70 and I-40 corridors.

Moving up my schedule to leave tomorrow morning for California. Got this update from my dad today, which creates some urgency, especially since Stage IV thymic cancer has a 5-year survivability rate less than 50%:

The reason Alan is back in the hospital is because he was again having difficulty breathing. The doctor was stumped yesterday so he ordered a CT scan this morning. The results are not good. This tumor has swollen significantly since last week and is now pressing against and closing off Alan’s trachea. The worst part is that there are several sound medical reasons why they can’t simply go in to do surgery. There are two types of thymus cancer; thymoma and thymic carcinoma. The treatments for both are very different and Alan’s surgical biopsy results won’t be back until Friday. With that said, Dr. Brooks consulted with their senior pulmonary
oncologist and they agreed that they need to immediately shrink this tumor to enable him to breath without intubating him or worse. They decided to start him on a Chemotherapy Cocktail today in hopes that this will shrink this monster. This particular chemo is very often successfully used on lung cancer patients. They can’t give him radiation right now, because the resulting inflammation will only cause more swelling and more difficulty breathing.

Even though the biopsy results are not yet back, his oncologist and the other surgeon are sure this is in stage 4. So Alan is in for a very rough ride. Now that Alan has given the doctor permission to share information with me I will make sure I pass it on quickly while it is fresh in my mind because frankly I’m an emotional soup sandwich right now. Yeah, I make lots of jokes on FB but I love my family and certainly want to help in any way I can. By the way, the doctor gave Alan a few options and Alan wants the chemo now. He will probably be at infusion therapy receiving chemo for 4-5 hours at a time and since this is in fact a platinum based chemo he can in fact have multiple sessions per week. The key is to shrink that tumor while waiting for biopsy results and helping Alan breathe normally.

Shit, that's so gut-wrenching. I have emails with those kinds of details from when my sister was first diagnosed/had surgery, and I couldn't bring myself to read them all the way through. I still haven't.

Your dad sounds like good quality, Phil. Good luck and I hope like crazy that the chemo gives Alan some immediate help with his breathing.

To add insult to injury, my wife found out today that her last living grandparent just died.

jeez Phil ... hugs to you & family, lots of rough news to deal with

sorry phil, that all sounds really rough

but <3 your dad - "emotional soup sandwich"

someone from the other forum i've belonged to for 8 years just died of cancer. he had posted in the 'back alley' (77 equivalent) that he was terminal and heading to hospice, and then all of a sudden he was gone.

I'm so sorry, Phil. I work in hospice/palliative care and it is never, ever too early to talk to someone from the hospital's palliative care team. Heck, depending on the insurance and medical situation, some ppl can get chemo *and* receive hospice services at the same time, which can be a real blessing to the person and family. Oncologists are kind of notorious for not bringing up palliative care, so I encourage everyone to be an advocate for that, like when it is my family I *insist* that the attending doc order a palliative consult. It can be really valuable to have that collaboration, plus a different perspective, plus someone who is usually better at communicating than your average dr joe/josephine.

I work in hospice/palliative care

Hats off to you.