Requesting Advice

[stillane]

Hi all.

(Have you figured out yet that when a post starts that way, it's going to be a doozy?)

I have a request to make from all of you. I don't quite know how to put this, and I'm pretty much guaranteed to be incoherent about it, but here goes.


The background info:

Cancer. It's funny that I can type it, because so far I can't say it. I never understood the fear of that word before. No one I knew very well had ever had it, not in the present tense. I knew those who survived and I knew of those who hadn't, but I'd never been around for the diagnostic stage. Intellectually, I got it, and from a biologist's standpoint, I could explain the mechanisms and causes of it, but I never understood the way it can make you freeze up, make you shake so that your teeth rattle, make your chest hurt until you remember to breathe. I could see it, but I couldn't feel it.

I get it now.

I just hung up the phone with my dad. As it turns out, the biopsy that supposedly came back routine and safe and fine wasn't any of those things. My parents couldn't tell me until they'd had some time to deal with it. It seems tonight was the right time. I don't think there is a right time, but I guess this is as good as any.

I have no idea what to do with myself right now. They're saying it'll be okay, that I should stay at school and pay attention to course work and that sort of thing. They're tossing around options and making plans. Apparently, it hasn't spread, and it seems to be in the early stages. I don't know whether I should go home, or wait to hear what the treatment is going to entail, or try to finish out the semester. I just want to know what the odds are. I don't know that I can trust them to tell me.

I don't want to put more pressure on Dad, and I know that dropping it all and coming home now will do that. He'll feel guilty, and I can't add anything on top of all this. I'm also afraid things will go wrong, though, and I'll have wasted time. I have no idea what to do with this.



The important part:

All of this is leading to that favor I mentioned. I need more information on prostate cancer. I've got access to the usual list of treatment options and explanations, but anything you could add would be appreciated. Mostly, it would be good to hear from someone who's been through this, or who knows the ropes. I need to know what I should be listening for, just how scared I should be, what I should be preparing myself for. Anything you can offer would be gratefully accepted.

I'm sorry to bum everyone out, but I really need everyone possible to read this to get the widest information net I can. Thanks for your time and patience.

To those of you who know me well, please bear with me as I space out for the next few days. I'm still too numb to predict how I'll react once it sets in.

Comments

[maygra.livejournal.com]

I can't offer specific advice for you or your dad, but I'd sugggest starting here: http://www.cancer.org/docroot/CRI/content/CRI_2_2_6x_Prostate_Cancer_Survival_Rates.asp?sitearea=

My dad had it but he had a host of other problems too.

[stillane.livejournal.com]

Thank you. The statistics on that page let me take the first easy breath I've had in a little while. I'm following the assorted links about treatments and aftermaths, and it's the most straightforward site I've seen.

It's also strangely comforting to hear that others have been through this. Another one of those intellectual vs. visceral understanding issues. Thanks again.

[http://users.livejournal.com/_minxy_/]

The odds are going to vary with your Dad's symptoms, but because they caught it early the most. important. thing to remember is that cancer is a TREATABLE DISEASE. Treatable. This is the word you should be bandying about with your parents. Cancer is becoming a disease people survive and live with, like diabetes. There are so many options now between surgery and radiation and chemotherapy. There are variations in chemo treatments available and more and more specific targeting of radiation. Right now, it's contained, it's localized, and that makes it a prime target for surgery.

So for your own peace of mind, get your parents to talk to you about what their doctors are saying about treatment options and the time table. Often, the first biopsy results will say only that something is wrong, but it will take longer to diagnose exactly the type of cancer they are dealing with and what the best treatment offensive will be. So there will be much waiting going on, and really if you dashed home right now, there would be nothing for you to do to quell your energy.

It won't be fun to stay at school (I had to when my mom was sick too, and it broke me quite a bit) but it's important to your folks, and you should consider how much it means to them to have something good happening. You'll be home for the summer likely by the time your Dad starts treatment. Just try to keep your head in the game until then, and make sure your parents know that the details and the truth are more helpful that being sheltered from the reality of the situation. Sometimes they think they're protecting you but not knowing is often worse.

Best I can do without knowing the details. Good luck, m'dear.

[stillane.livejournal.com]

Thank you so much. You answered pretty much all of my flailing practical questions, even without the details. Knowing that this isn't something I need to figure out overnight makes it a lot easier to take a step back and think. I know my parents were rather dissatisfied with the way my dad's doctor handled the whole affair, so I think they're hunting down a second opinion and a more compatible personality right now. For the moment, the plan is to get as informed as I can, finish out the semester, and go from there. They seem to have a good deal invested in seeing me graduate, so I'm working on that principle. With luck, this original hiatus will be the only time I'm out of the loop. They're usually pretty good at keeping my sister and I up to date with life, so I'm hoping this was just the result of them needing some time to come to terms with it all and make plans. I'm going to choose to stop feeling paranoid about that looming other shoe.

Thanks again for taking the time to offer your knowledge. It helped tremendously.

[joannindiw.livejournal.com]

Prostate cancer is one of the more easy-to-treat types of cancer there is. The fact that it hasn't spread? The best sign. (going with what _minxy_ said.

[stillane.livejournal.com]

Thank you. This seems to be what I'm reading on the subject, and I'm starting to feel a little more comfortable with the whole issue.

[tenaciousmetoo.livejournal.com]

Quick introduction in case I've never commented here before -- I'm a fan of your writing, and so I added you to my FList and Fic Filter. I hope it's not too forward of me to jump in and add my two cents, but I do know how scary the word "cancer" can be. So, at the risk of offending or making you feel "who is this person?" here's my input.

When I had thyroid cancer a few years ago, I was all over the internet seeking answers to questions about what I could expect, from symptoms to treatment options. There are a number of good technical sites, but the one I found most helpful was actually a support board (Healthboards) where patients and families of patients shared their experiences. There are specific threads for various conditions.

I have to include the caveat that most of these people are NOT physicians or trained medical professionals, but they do have a lot of information to share that can help you research things and answer some questions.

The prostate cancer thread begins here. Hopefully, the folks who post there are as well-informed and helpful as I found in Thyroid World.

If/when your folks share more technical details, you will know more and more about what to expect, but "not having spread" and "caught early" are the things you really want to hear when dealing with abnormal cells. Remind yourself that this is treatable, generally with minor side effects (many of which are personal and your folks may not want to discuss with you), and do your best to continue with your "normal" life without letting fear take over.

Sending support and many healing thoughts your way.

[stillane.livejournal.com]

Thank you. It's not forward at all. I wouldn't mind if you were just stopping by to babble, and certainly not when you've come to offer help. There's absolutely nothing offensive in that.

The Healthboards site has been extremely helpful. It's very much what I was looking for in terms of the human side of the equation. I have biologists and anatomy types around me who can probably explain much of the rest, but the 'been there, done that' factor and commiseration are things that I wasn't sure where to find. I'll definitely be adding that one to the list of places to point my dad to.

One of the scarier parts of all this is that I'm usually the medical source for the family. Typically, they toss out an issue and I go to work figuring out the best approaches, what questions to ask, etc. I know my parents weren't impressed with the doctor who handled all this, and it worries me not to know the quality of the information they were getting. It helps immeasurably to have some knowledge base to work from, and to have a hint about what I should be keeping my ears and eyes open for.

Thank you again, both for the information and the sentiment behind it. It is greatly appreciated.

[raucousraven.livejournal.com]

I'll ask about for more info. From what I've heard, early detection is a good thing.

And oh my dear, *HUGS*.

[stillane.livejournal.com]

*clings a little* Thanks. I'm doing slightly better with it now, having talked to the parents and done a bit more research. Mom has promised not to keep me out of the info from here on out, so I think I'm getting it straight at least, and there aren't any scary details waiting to jump me. The early detection is indeed a good thing. The five-year survival rates seem to be promising as well. My parents are optimistic, and the crushed feeling has worn off. I'm working on getting the treatment options compiled in terms of pros and cons so that Dad can weigh them objectively. From here, though, the big thing is finding a doctor that he feels more comfortable with.

I need to talk to my little sister, too. I spoke with her very briefly last night, but she was doing some major avoidance of the topic. I'm not sure whether it's better to let her pretend, or to get her talking about it. Hmm.

Aside from that, I'm trying to be as normal as possible. It seems to help to have things to do, which is probably good news for the thesis (and might result in a scarily clean dorm room and possibly terrifying amounts of fic). Stress = productivity, apparently. For now, it's a case of riding it out until the end of classes and then re-evaluating. From there... *shrug*

*loves you for the hugs, by the way*

[the-moonmoth.livejournal.com]

I have no experiences of my own to share and no advice, but I come bearing optimism (completely justified, I see, from everyone else's comments) and hugs, and my best wishes for both your dad and you. If you ever feel the need to just write it all out at someone, feel free to email me *sends a whole airplane load of hugs*

[stillane.livejournal.com]

*thinks airplanes are shiny and wonderful, particularly when I am not in them* If I haven't said it before, I kind of love you. The hugs are greatly appreciated, and I may need to take you up on the Email of Doom idea. I have a feeling the next few months are going to be interesting. Thanks, primarily for being you.

[the-moonmoth.livejournal.com]

Thanks, primarily for being you.

Dude, that's pretty much the only thing I can be for you. I'm glad it's something, though *more hugs*

[lachli.livejournal.com]

Hi, I dropped by your journal to read an SPN fic that was recced to me and I caught this post.

My dad was diagnosed with prostate cancer over 5 years ago, he was lucky that it was caught early, it was discovered because he'd got a really bad back and they were doing tests on that and inadvertantly discovered the prostate.

He had the prostate taken away and has regular injections, plus radiotherapy. He did really well with it all and the prognosis from the Doctors was always positive, apparently it's a very common cancer in older men and very treatable. My dad was naturally very worried, but go through it all admirably. Five years on he's still doing fine, has regular check ups at the hospital, every six months I think, and barring one small scare which turned out to be nothing, everything has stayed normal. He's 70 this year, still works three days a week, has endless holidays abroad, plays golf and still enjoys his life.

I know it's easy to think the worst when you hear the word cancer, it fills us all with dread, but this is one of the most treatable and we were told it had one of the best success rates. I hope all goes well for your family and I'm sorry for butting in on your journal, but I thought you'd like a positive story :-)

[stillane.livejournal.com]

Thank you. Please don't ever apologize for stopping in to say anything hereabouts, and certainly never when it's something so kind. This was exactly the kind of thing I needed to hear. Having people who've been where we're headed tell me that it isn't all doom and gloom is incredibly reassuring. Please pass along my congratulations to your dad, and thank you again for sharing your story.

[tooembarassed.livejournal.com]

Like some others, I was just stopping by to read some fanfic when I saw this post. There's not much I can say that hasn't already been said, but here's what I know.

Cancer no longer equals death. My father had skin cancer, my grandfather had prostate cancer...and both are still living. My grandfather was diagonsed with prostate cancer about ten years ago, did chemo (with very little side effects)and has been cancer free since. He goes yearly for checkups and is in excellent health...and he's 78. My father thought he had it two years ago, but he "failed" the test and everything turned out fine.

The greatest advice I could give you is to remember that you aren't alone, don't cut yourself off from other people, talk to anyone who will listen, and understand that at times like these, no matter how much your parents love you, this illness will affect them the most. I don't know your family, so I won't presume to assume what they will or won't do, but remember if you find them doing things that they won't normally do, it's the disease talking, not them. Fear makes people do strange things.

There are many support groups out there. Not all of them will work for you, but keep looking until you find the right fit. Keep a sense of humor about you (prostate cancer, with all it's "side effects" can bring out the most inappropriate comments/jokes...which is fine in a family like my, but not in all families), and prepare yourself to learn things about your family you never thought you'd know.

Just don't give up hope. Cancer can be survived.

[stillane.livejournal.com]

There's not much I can say that hasn't already been said, but here's what I know.

Cancer no longer equals death.

Really, that's not something I can hear enough. Thank you so much for sharing your knowledge and wisdom. It's both practical advice and the voice of experience, and I appreciate it immensely. In particular, the humor is starting to make it's way back into the mix. We're a pretty irreverant bunch, most of the time, and it's a relief to start to see some of that emerging.

Thanks again, and please wish your family all the best for me.

[mardia.livejournal.com]

I was just exploring your journal and came across this post. You don't know me (I'm a fan of your fanfic) and I do feel odd butting in, but I just wanted to express my sympathy. There's not much I can say that other people here already haven't, but I wish you and your family all the best, truly.

[stillane.livejournal.com]

Please don't feel strange. Thank you so much for the good thoughts. I didn't really intend the post to be a 'poor me', just a hunt for information, and all the kindness has been both surprising and generous. I can honestly say I've been fully confirmed in believing that the people I've met out here in LJ world are wonderful. Thank you again for being among them.

[vonknibble.livejournal.com]

Hi,

I'm another of those who has likely not commented before, and who'll you'll not recognise. (another fic fan)

Sorry to hear about your father. I won't bother re-iterating whats been said already in any detail, but i agree with it all - the signs are good that your father will make a full recovery from this, and thats what you have to focus on.

The main reason i'm posting this, is to make sure that you don't neglect yourself. I know you're scared for you dad, and both your parents and yourself respectively - but don't forget that the biggest and best thing you can do for them both right now, is to look after yourself, stay at school and work hard, stay healthy and most importantly make sure that you have a support network - however small - of your own.

I know how easy it it seems for me to say this - believe me i do. But i've been on three sides of this magic coin - as patient, loved one and professional. Knowing that you are safe and well, and getting on with your life will be a big relief for your dad, and mean he can focus his energies on getting well again, and not so much on worrying about you.

As for wasting time...it is, as they say, quality, not quantity. Make sure what time you get with him is good time, and stay postive that they'll be lots of good times to come :)

VK

[stillane.livejournal.com]

Thank you so much. I'm a little notorious for getting rundown when the stress is on, and your reminder is both timely and important. The one good thing in all this so far has been discovering that network that you mentioned. There have been some amazingly supportive people who have stepped up to keep me balanced. I'm very lucky that way.

Thank you again for sharing your experience, and all the best to you on every side of that coin.