bware21

By the way, Mary -- it's words like "doubtish" that made Charles Dickens the literary master that he was. One of his "funnest" (there's one) things to do was invent words, especially names. He had little time for grammar (his manuscripts were a mess) and confessed that he had no idea where to place a comma. Bill

Ha -- it isn't words that are important but what they say. I have a storehouse of words that mean nothing to anyone but me. I'm counting on those scan results being perfect for you guys. Me? I find the "results" thing the worst part of it all, because it's the time when you lose all control and just have to sit on your butt and wait. Bill

I'm no expert by any means, but for sure the side effects have been progressively worse for me as the treatment continues. I see he's gained back some weight and that must be a good sign. In my case, the side effects do seem to come and go as they please -- and pretty quickly too. One day great, next day yuk. Positive. Positive. Positive. Positive. Bill

Guess I must be getting stronger if I'm cruising through the grieving section. Anyway, I just wanted to clarify that I was the one who brought this topic up originally -- not Nick, so if there's a "culprit" here it's me. I'm not going to regurgitate the discussion here because I have a better understanding of where everybody's coming from ... and I agree with you. There's just one point I do want to stress, and it's this: I'm not just a cancer patient. I've been on both sides of the fence with this, having lost 4 people to cancer in the last 6 years alone, including my mother and stepfather. In other words, I didn't start this discussion because I was uncaring, dispassionate, or ignorant of the feeling that are involved. I started it because I thought it was important, and clearly it was otherwise the responses would not have been so passionate. I learned something from this. If it caused any distress, it wasn't intended. Bill

You might have lost a little weight, Aaron, but you ain't lost your sense of humour. Maybe we should get a group to go on Oprah -- wanna see the upside of cancer? As for seeing your 88th birthday. Teri and I went on a road trip around America a few years ago. We happened to visit Teri's great Aunt Marion who was 101 at the time. Marion had a quirky sense of humour and spent a good 15 minutes moaning that she was kinda bored with life because all her friends were gone ... and she was thoroughly p****d because her cancer had been cured 3 times already. Later in the trip we visited with Teri's cousins and they showed us a picture of Marion's tombstone -- they'd had it prepared for 4 years and the engraving read: "Marion Davis 1897 - 19xx" with the final two digits ready to be filled in. I said, "Hang on, it's 1998 -- if she lives another couple of years you'll have to scratch that out and replace it with 20xx." Sure enough, she lived to be 105. No telling how some people will be so inconsiderate as to screw around with your plans. And how many people have lived long enough to see in 3 centuries? Bill

Jen -- obviously I'm still not reading profiles with the care I should be, otherwise I wouldn't have needed Teri to point it out. I'm still hesitant with the profiles but I'm getting there. The bizarre thing is I thought you guys looked like a really cute couple -- you happy and beaming, and your Dad with such a friendly smile. I often joke that I have the best diet program in town, but still haven't managed to find the humour in it. Take care, Bill

Your Dad's very lucky to have you supporting him during this incredibly tough time. And you're very lucky to have your Dad and his fighting spirit backing you up. Give him love, more love, and still more love ... Thinking of you. Bill

Jen, I wasn't going to post here again, but Teri just pointed something out to me that I didn't even realize. That is, the photo of you and your Dad. All this time I thought it was you and your husband. Huh, he's a young looking guy ... or I'm as blind as a bat (and I'm not). Bill

I'm pretty sure what I had to say will spark some responses, and that's okay -- a debate is always a good thing. But this is Aaron's thread, so a new topic (if necessary) should be started. To Aaron, I say this -- you may or may not make it to your 88th birthday, but I for one wouldn't be surprised if you did. There are just too many mysteries for anyone, including me, to argue against it. What science knows about the human spirit could be written on the head of a pin with room to spare. Having said that, I won't be at your 88th birthday party unless I happen to push 115, so please excuse my absence. Bill

When people talk about positive attitude, why on earth would anyone want to put a negative spin on that? Is the objective simply to strip away every tool that doesn't conform to the left hemisphere of the brain? Or is it merely the ego that's at work here? All the knowledge, experience, logic, and eloqence would be put to better use on the science. Leave people something to fight with, even if you disagree. It may be the only thing they have. Bill

We're counting on you, Aaron. And I'm not saying this in a bold attempt to make you feel better, but I believe you can do it and have those years be NORMAL, without flitting back and forth for tests every week. The one thing I would disagree with from an earlier post is that *attitude* won't make a difference. Of course it will. Look at the physical condition of any clinically depressed person and then try to argue that their mental state has nothing to do with that rash or boil. The mind is constantly altering the way our bodies respond to the social environment, the physical environment and just about everything else. And if someone suggests that a rash or boil can't be compared to cancer, I'd argue strenuously that it can -- but I'm not going to argue it here. That some people live and some people die as a direct result of their cancer, I'd agree is not a reflection of a good or bad attitude. I could have a great attitude and still die from it -- but for sure, if I allowed myself to embrace the negative and downbeat outlook I had last week then this cancer would easily get its way. I'm going to make darn sure that doesn't happen. You're going to die one day, Aaron ... but that day's a helluva long way off. Bill

Hey Gabrielle, I'm relying on your Mother-in-Law to beat this. Bill

Aaron, I wasn't going to chime in here, but I guess I am so here goes ... When I was initially diagnosed one of the first thoughts that flashed through my mind was -- screw that, I'm only 54. Then I come on this Web site and I see people of all ages, you especially who happens to be exactly half my age. Add to that that you're a non-smoker and I've smoked for the better part of 41 years and I have hard time seeing the fairness of it all. I don't see the "fairness" because there simply isn't any. I admire your strength of character, which you clearly have in abundance. And if anyone can rise above all this it's probably you. Before this started with me I would have put money on it that age made all the difference. Now I'm not so sure. Maybe attitude plays a bigger role than age, though saying that is rather like saying: "If you die you had the wrong attitude," which is not the case. Maybe the whole thing is just a bad celestial joke, I don't know. My only concern with this thread is for the new people joining the site and being immediately confronted by statistics. I think we all know that at the onset of this journey most of us avoid statistics like the plague ... then as time goes by we get more at ease with everything. But when you're new -- Hmmm? Might be better if people responded to statistical polls via a PM? Just a thought. I wish you nothing but continued strength. Bill

Ernie, Teri said it all. Have fun with the marathon ... even if you have to crawl on your hands and knees to the finish line. Bill

TBones, You sound like one hell of a survivor to me. Go with your gut, I say -- it's got you through life this far. Bill

Hey Wondermom, First -- don't second guess the results. You might be pleasantly surprised. Second, even a PET scan is only about 85% accurate. Always a possibility it might show a hot spot that is nothing more than a bit of arthritis. Waiting for results is always going to be tough. No way around it, but try not to anticipate anything but a good result. Bill

Always knew it -- miracles *do* happen. Great article, Ernie. But better than that -- a wonderful inspiration to everyone. Just don't go crashing the damn plane. Bill

Every time someone replies to my original post in this thread I get that sick feeling because I know the darn post has just been kicked up to the top of the list again. Ah well. I do still think the discussion was a healthy one, albeit some paid a hefty emotional price ... but even that I think is not necessarily a bad thing. Like I said elsewhere, a little bit of hurt can be good for the soul -- it brings it alive. Bottom line: it's a tough road to hoe and none of us needs to be going it alone. How sad would that be? Bill

Ernie, Couldn't have said it better myself and obviously I didn't. I think the reality is that the site administrators have done the best they can with the structure and organization of the site. I don't think there's anything better that can be done from their standpoint. From the community's standpoint, I don't think there's much that can be done there either. None of us are perfect and we'll all end up posting something somewhere that someone else will find disturbing. I think I've seen the light on this, and I hope sincerely that everyone ignores my idiotic suggestion about the timelines. Although I do think it's been a "healthy" discussion, maybe this entire thread should be deleted? Just a thought. Hey, by the way -- I hear that you'll be taking people on airplane rides. Good for you and great for them. No pressure ... but win that damn marathon!!! Bill

Melinda, I have to go to a meeting so this will be a little rushed, but thank you for your understanding -- and thanks to everyone here who has understood what's been happening these past few days. I know I've upset people and I'm sorry for that, but we can't always be treading on eggshells. Someone's always going to get hurt occasionally, but if there's one thing that's been driven home to me these past fews days it's how very important this community is. Any hurt we might accidentally inflict is a small price to pay -- and that statement right there probably hurt someone (joke). Men are just plain stupid sometimes -- what can I say? Bill

nyka69, Like you said, let it fly. I'm glad to see that your husband is getting treatment. The treatment can work for him. The very nature of SCLC makes it respond very well to chemotherapy. And regardless of whatever I might say when I'm in a mood, what the doctors might say when they're having a good day/bad day, and what you yourself might think ... YOUR HUSBAND CAN BEAT THIS and you can get your lives back on track. Don't ever lose sight of that for more than a fleeting moment. It's the toughest battle in the toughest war -- make yourself the victor. Bill

Having cancer or watching it do its work on your loved one -- which is worse? For the loved ones, let me give you some insight ... and if there's a big "duh" factor in this, so be it. For those who have cancer, it may not be the same for them as it is for me but I'm pretty darn sure there's commonality somewhere in this. Let me start with a story to establish a mind set. I have an "almost" classic car. It was one of the last Jaguars off the production line in Coventry and just so happens to be the very car that Pete Postlethwaite was driving when he picked up Kevin Spacey at the end of the movie, The Usual Suspects. Basically it was my pride and joy and I'd looked after it. It was Christmas Eve or maybe a couple of days before. A young woman backed into me. She jumps out of her SUV. I wind down my window. She's says something really stupid and I say, "Have a Merry Christmas" and drive off -- I don't even get out of the car. There's at least $1,000 worth of damage to the back of my car and I didn't bat an eyelid. That told me something. Had I given up already? At that moment in time the answer was probably yes. And that's the key -- a moment in time, with each moment being different. I haven't had the car fixed, and I'm still not sure if it's because I don't want to waste the money on it or it's serving as a reminder. A reminder of what, I have no idea ... but it must be something. So what do I think about during the day? Not a lot actually. The really hard stuff is neatly stored away somewhere -- like my wife, Teri, who is being so strong throughout all this that it blows my mind. Yes, I get fragments of thoughts seeping out of that hideaway place ... like Teri is just 43 years old and I'll be leaving her with a house that is parially remodeled, yada yada. In those "moments" when I'm feeling strong I'll say stuff like "sell the bloody house" and "I won't be mad if you get remarried." But mostly I'm not strong enough to face those thoughts for longer than a second or two, so back they go to their safe place, which is full to overflowing. As a consequence I lose my train of thought quite easily and forget the simple stuff. For example, I just had to go downstairs and check the American Beauty DVD to remember Kevin Spacey's name. I used to think this was the onset of brain cancer but now I've figured it's just the mental struggle taking its toll. And what do I think about at night when I go to bed? This is a lot different. Now I'm rather hoping that my dear mother will appear to me in a dream and offer some guidance ... or anyone else for that matter. No luck yet. And what about dreams? Why haven't I had a nightmare about death yet? Here's a possible explanation from Carl Jung, and I quote from another source: "Not long before he passed away, Jung was asked if he believed in life after death. Asserting that he did, Jung proffered as evidence the fact that the dreams of individuals approaching death seem to disregard their own approaching mortality, as if it was a relatively insignificant transition." And from psychoanalyst Marie-Louise von Franz: "... dreams about a continuity beyond death cannot be simply wish-fulfillment, partially because dreamers on the edge of death dream about the body in quite stark and realistic terms. If dreams were playing into the dreamer's need to deny death, then such scenes would be conspicuously absent from dreams." How do I feel physically? Weird, but for the most part I feel just fine. The thing that bugs me the most (here comes the vanity) is the loss of my bloody hair and the fact that I now loook like I just spent 3 years in Auschwitz. The photo in my posts doesn't come close to who I am right now and that really ticks me off. But like I said, that's just a vanity thing and rather insignificant ... or is it? Nope, it's actually really important because when you look in the mirror and you don't recognize yourself it has a deep and piercing effect on your own sense of self. The other obvious physical reality is the constant overwhelming concern that any moment the s**t is going to hit the fan. As I've said to Teri when I've joked that I feel pretty good ... maybe this is just the calm before the storm? And it probably is, but I can't think too much about that. I was reading an interview with Billy Graham just the other day and the reporter asked him: "Are you afraid of death?" Nope, he says (actually he say "no" but "nope" feels just a little more upbeat), but I am afraid of the dying process -- duh! And that just about sums up my attitude to death. And it's probably the most common feeling there is. For me, to be afraid of death is just plain ridiculous as that would require you to spend your entire life in fear. The dying process, on the other hand, is something less easily dismissed. I can't imagine there's a human being on the planet (with perhaps the exception of the occasional psychotic) who isn't afraid of the dying process. I've been there with my mother and my uncle and IT SUCKS. Selfish of me, but I've asked Teri not to stick me in a hospice. Selfish, because that would mean Teri would have to go through the whole sordid death business with me, and that is, without exception, the most upsetting piece of this entire puzzle. Now how my dying process plays itself out I have no idea -- maybe I won't be coherent so I won't have a say in the matter. Anything's possible. And yes, I've looked at my shotgun a couple of times, but there's just no way I'm taking the easy way out. What a legacy that would be? I used to pray every day for a miracle but I stopped doing that because I figured God heard me the first time. The chemotherapy? It seems to be working. Got an X-ray result yesterday which showed no evidence of disease in the lung, but that went in one ear and out the other -- you can only take so many tests before you start feeling like a damn guinea pig and the results become meaningless. Of course, I'm thoroughly grateful for the chemical treatments, and I know they're having a positive effect, but I'm putting my hopes somewhere a little more substantial and long-lasting. I could be right, I could be wrong. I think I'm starting to ramble here so I'll close it down. Hope this gives some of you an insight, even if it's just about me. Not that you needed it. I know that everyone on this site has their own story and their own unspoken fears. But let's end it on a more cheerful note. There's an upside to everything, even this -- it stops you in your tracks and forces you to think about life in a way that you should have been thinking all along. For that I'm grateful. Take care, Bill

All, I hadn't intended to keep the fire burning by responding to anything, but enough people had important points of view and I'm compelled not to ignore them. Although I do stand behind everything I've said that doesn't make me right -- it just means it's my opinion. I had this out with my wife last night, who is pretty much in line with everyone else ... which means I'm probably wrong. And that's okay, but sometimes you've just gotta say what's on your mind. We're all grown-ups here -- and what could make anyone more grown-up than dealing with cancer? I can't think of anything. If I made any error it's that I didn't clarify where I was coming from in my original post, which rather left people wondering what the hell I was talking about. I did that intentionally, not because I wanted to be vague but because I didn't want to draw attention to the post that bugged me or to my stupid exercise of going through historical posts -- for the benefit of newcomers to the site who are still finding their way. Also, I notice that PatKid's response to me was deleted. That's a shame because it was her post that really got me thinking and made me realize just how hurtful I can be -- in fact, how hurtful anyone can be when they're in a particular frame of mind. If possible, I'd like to see that post restored as it's a glaring example of how much sorrow this disease brings to a family. I do think what I had to say was valid, but on reflection I also think my suggestion about the timelines was a big mistake. And I say that to acknowledge how important those timelines are to the healing process. When that dumb idea popped in my mind I was thinking only of new people coming to the site and how best to paint nothing but a positive picture for them. That in itself was a ridiculous notion, because at the end of the day you can't protect everyone from everything. So, although I stand by what I said I also know that my reasoning was flawed. This is no excuse, but when I was undergoing chemotherapy today the nurse asked me if I was overly hungry or overly hyper last night. Yes, I said -- by why are you asking? Oh, because I gave you a dose of steroids yesterday. That's not to say I couldn't think straight, but it explains to me why I couldn't think long enough and allow my frustration to peter out. Regarding statistics -- the statistics I found were of my own making. Articles have never bothered me (unless they include unhelpful comments) and I've always ignored the statistics. But the statistics I ferreted out by going through the history on this site really upset me -- bear in mind that when you do that you are also looking into people's lives (I was reading the posts too) and the sorrow kinda sticks after a while. This is a great Web site. I said it weeks ago and I say it again. For me to expect perfection is unreasonable. And even if it was perfect for me it sure as hell wouldn't be perfect for everyone. The common theme throughout everyone's response has been the "community" and the value as a whole, not the individual. The more I write this paragraph the more upsetting it is because I obviously lost sight of that. I'm sorry for any hurt I've caused and for the opening of wounds. But you know, sometimes a little hurt is also a little helpful to the soul. Thanks for your input and for setting my mind straight. I should have listened to my wife before I posted. Bill

I stand by what I said but I won't say any more, except this: I'm sorry for everyone's loss -- truly. Bill

Okay, here's the deal (and if I repeat myself I apologize) ... Last week I was feeling great -- upbeat and positive, and with the fighting spirit of a cougar. Then, I come onto the site to browse through the posts. I open one post to find an article that was copied from another source, and a couple of lines into the article I read: "Long-term survival in SCLC is poor ..." Because I'm dealing with SCLC, you can imagine that these few words popped out at me. Now, after reading through the entire article I felt strongly that this commentary could have been removed from the article without diminishing the point. And that made me angry because I thought it demonstrated insensitivity and poor judgement. The fact that the author of the post doesn't even have cancer, let along SCLC, just added to my frustration -- which will lead me to a topic I'll discuss later. But back to this line of thought ... I'm a pretty strong character, though sometimes intolerant, ocassionally arrogant, and often just plain stupid. So, I'm thinking: Long term survival for SCLC is poor, huh? We'll just have to see about that. And here's where my stupidity kicked in -- I now decide to go back through the history of this site and see for myself how everyone with SCLC ended up. Well, it didn't take a calculator to figure out that, with the exception of a couple of people, everyone was dead ... and usually within 12 months. One week later here I am fighting to get my fighting spirit back, and I think I'm finally succeeding. Another few days and I'm sure I'll be back to my old self. In the meantime, I thought it incredibly important to draw attention to to an issue that isn't difficult to understand, but may be difficult to fix ... because, as my wife so rightly points out, this site is catering to two distinct groups of people -- those with cancer and those family members who have to witness it. On the point I've just talked about, it was my own stupidity that led me down that dark path -- I knew when I went back in time through this site that I wasn't going to find anything uplifting (from my standpoint). Nobody's fault but my own. The next (and final) point I want to address stands a good chance of offending a lot of people, and for that I really do apologize in advance. And let me preface what I have to say by stressing that I wish to offend no-one. For goodness sake, there is so much grief, sadness, hurt and turmoil here that it almost defies belief. Having said that, sometimes you have to tread on thin ice to find out where the weaknesses are. So here goes ... Clearly, this site is helping people who have cancer and their family members -- two distinct groups with totally different needs. As a result, there are bound to be cracks in the ice, so to speak. If anything, I'd suggest that there are more people active here who do not have cancer than do. I've thought hard about how you can reconcile the two groups to enable the best support for both. The truth is it can't be done. There will always be disconnects and that's no-ones fault -- just the nature of things. But here's one practical suggestion, and I put this forward from my point of view only: When someobody dies from this insidious disease I think it would be a good idea if family members that continue to post removed the timeline from their profile. And before you jump on my back, let me explain myself ... When your timeline is updated annoucing that your loved one has died that timeline is updated in every post you ever did. For someone with cancer, going through the posts is rather like reading an obituary column. I'm not sure that's helpful to anyone who is currently going through what you yourself have already been through. This is a tricky one, because it begs the question -- who is this site really for? And I've already said that it's for two distinct groups who cannot be reconciled. I know I've hurt someone by making that suggestion, and I'm sorry for that. I feel your grief (I sat with my own mother when she died), and I do understand how important this community has become for you. Maybe there is no right or wrong answer to the questions I've raised, but if questions were never raised we'd still be living in caves. As for me, popular opinion says I'll be dead within 12 months. That may or may not be the case. What's important to me right now is that I regain the strength I had last week and fight this sonofabitch with dignity and faith, both of which I have in abundance when I'm operating on all cylinders. Peace. Bill