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When you were first diagnosed, or when the person for whom you are a caregiver was diagnosed, did you have the faintest inkling what was ahead?

I had no idea myself. I had an elderly and much-loved uncle by marriage die of cancer, probably colon cancer, when I was a child, maybe ten years old. Back then, cancer was mentioned in whispers, and once he became very ill I did not see him. Then my brother had malignant melanoma about thirty years ago or so, a complete surprise to everyone. His experience was unusually easy: he had the lesion excised; the margins were clear; nothing else has ever appeared. Besides, he refused to talk about it, at least with me, so I have no idea what he went through at any point.

My ex-brother-in-law had pancreatic cancer about ten years ago, which took him down quickly. He was still close to his ex, my sister, and to their four sons, and they were devastated as soon as he had a diagnosis. But it didn't affect me directly; they all lived in another state, I didn't like him much, and we encountered each other only once while he was ill. It was of course very hard for my sister and all the kids, and their grief was on my mind when I broke the news to my family. But my sister, bless her heart, did not hesitate to launch into action early on, even when things were looking pretty grim.

Fortunately for me, I guess, I had had no close friends affected by cancer--that is, until I met bunches of people through the Cancer Support Community, and you-all here. But all of that is another story for another day.

I suppose it's a mixed bag to have had some previous experience with friends or family who had to deal with cancer. Such experience can give you insight, but it might also give you the willies, sometimes for no good reason. No one's course is like anyone else's, even with the same kind of cancer, same grade, same stage. That's one of the more baffling aspects of the disease, as far as I am concerned. And then, too, no course of treatment is ever exactly the same. How often I wish I had a clone or two on which to experiment!

Our dear ZenTrainer had the idea that we should create some sort of template we could use to interview each other about our experiences, especially for those of us who are a little shy about producing an independent diary. So this is our first go-round: to put out a question without much narrative and to see what you have to say in response.

There's a poll, as you see, but of course polls, like diaries, are truly only prompts for discussion. Feel free to go on in detail if you like, or to write about something else altogether. We are here to be of support to each other.

Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.

Poll

Prior to your own cancer diagnosis (or that of your loved one), did you have any experience with cancer in people near and dear to you?

21%7 votes
21%7 votes
6%2 votes
3%1 votes
0%0 votes
21%7 votes
12%4 votes
12%4 votes

| 32 votes | Vote | Results

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Comment Preferences

  •  Polls! This is why I wasn't a social scientist. (16+ / 0-)

    I get caught in the details, and they never seem to cover all the bases, or at least not the useful ones....
    But please use it as a starting place if you choose. Otherwise, of course, you can bring up anything and everything.

    Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

    by peregrine kate on Mon Mar 31, 2014 at 03:59:37 PM PDT

  •  Is anyone else sick of no-make up selfies? (6+ / 0-)

    I ranted on Facebook and one person said its a fun way to help? How the fuck does it help? No one is going to see a pic of a face and go - fuck I need to donate. Another said its to spread awareness- like someone is going to see their naked mug and say- what the fuck is cancer?!? Is it a new party drug??

    Told them to fuck off and help for real by donating to national orgs, time to cancer wards/hospices, etc...

  •  Not a bit (16+ / 0-)

    None. Zip, zero, nada. Even now, looking back, the learning curve after my son was diagnosed at the age of two was STAGGERING. I imagined I knew a bit about cancer -- my uncle died of it, and enough people I knew had struggled with it, at I thought I knew the basics. Plus the stuff that pop culture tells us all -- if you know nothing else about cancer, you probably know the treatment makes you bald.

    The first weeks were a mad swirl of information, with enormous amounts of data thrown at us at a rapid pace. I didn't really get what a Hickman Port was until it was actually installed in his chest, and I certainly didn't have any clue that they even existed before that point. I had just figure it was all administered IV, ha ha. The list of things we had to learn to take care of the port felt like a massive lifestyle change all its own, and THEN it was made clear to me what "neutropenia" actually meant and the extent to which it was going to change EVERYTHING.

    So many procedures, so many things to learn, and even with very good nurses and doctors willing to guide us through this, there were a lot of things that were described and knowledge kind of assumed on everyone's part that it took a while to get. We were months into the planning stages of the stem-cell transplant -- by which point I could name lots of multisyllabic steps forwards and backwards -- before I realized that the transplant itself was not in fact some kind of surgical procedure. (Actually, the anticlimactic nature of the transplant -- two bags of what looked like blood pumped into his port over about ten minutes -- still kind of surprises me.)

    The bodily fluids, oh god, the bodily fluids. Mopping up buckets of insides that had ended up on the outside. Sometimes I wondered how he had that much in him.

    I really, REALLY did not get how much the entire world population fancies themselves instant experts on your kid's condition, either. For a while I couldn't go two hours without hearing either how awful it was to use chemotherapy or how I really could cure his cancer with an all-carrot-juice diet. I had to learn a firm and assertive way to tell people "we have our doctors and we trust their guidance" in a way that made clear the conversation was over.

    At first I didn't get how much it takes over your life and identity, either. I resisted the term "cancer parent" because as far as I was concerned, I was parent to a little boy, not parent to a tumor. The writer and English major in me eventually surrenders to the term, though -- "cancer parent" conveys  a great deal of information in a very short amount of words, so it's efficient. And I've come to terms with it.  Cancer was and is the central fact of our lives whether I like it or not. It does not define our lives but it always influences them. It will be with us always.

    I don't think I really understood the ultimately never-ending nature of it for a long time. For a good long time I viewed it, subconsciously, as "he fights the cancer until it's over and then either he loses and we plan a funeral, or he wins and things go back to normal." It was some months before I really grasped that even in the best-case outcome (which is pretty much what he got), NOTHING was ever going to be the same.

  •  I thought I knew (12+ / 0-)

    THEN........the reality hit home like a baseball bat between the eyes.  everyones' course of disease, treatment and recovery (for some of us) is unique just as we are unique individuals and members of the species, Homo sapiens.  

    Our capacity to adapt to these adverse circumstances is how we continue to manage the new us, both adapting emotionally as well as physically.

    I gained enormous insight into our capacity to adapt of us as organisms when I witnessed first hand the remarkable recovery of a family member who suffered a pulmonary embolism and subsequent 95 minutes of CPR prior to surgery to remove the embolism. Do they have residual limitations? yup. But they drive the children to school each morning.  now 4 years later, they are STILL improving their ability to function in their daily life.  

    Still 13 months after my "definitive treatment" AKA removal of my whole left lung, I am still increasing my abilities to function at a higher and higher level of exertion.  I can do more today than I could last month and next month I hope to increase yet again.  

    Life is not a problem to be solved but an adventure to be experienced.

    by DarkHawk98 on Mon Mar 31, 2014 at 05:55:51 PM PDT

  •  I said nope. Didn't know anyone with cancer, (9+ / 0-)

    no cancer in my family and really didn't care about cancer.

    But the truth was my brother in law died of lung cancer I just wasn't anywhere near him so wasn't involved.

    And it wasn't till AFTER my surgery that I realized that my mother had died a long and lingering death of leukemia when I was 8. Ha! No cancer in my family.

    But really I never thought of it because leukemia isn't genetic. I probably would have paid more attention to a potential effect on my future if she had died of breast cancer.

    Tracy B Ann - technically that is my signature. If I had Bill Gates money, I'd buy Detroit.

    by ZenTrainer on Mon Mar 31, 2014 at 06:55:19 PM PDT

    •  Isn't that something? (7+ / 0-)

      Makes a difference, though, if you're not an adult, keeping company with someone who is sick.

      For that matter, though, I myself didn't describe here the closest connection I had to someone who had cancer and died of it eventually: my ex-father-in-law.

      My place in the family was pretty precarious by the time he died, eighteen months after diagnosis, but it didn't really start out that way. And I was fairly involved in his late-stage illness (he lived out of town from us, so I wasn't on call till the end), making him food to tempt him to eat and the like. Poor guy. In those 18 months, he and I became pretty close, much closer than we had ever been (and might not have been otherwise, unfortunately). That was a bittersweet aspect, too.

      I have written about his death before in some other diary. In some ways it was cruel; he was only 63 and went down fast--stage IV prostate cancer at diagnosis, already in his bones. But in another way his death itself was amazing. I truly believe he decided that he was ready to go, and so he did. It was hard work, too, but he managed it well. You could practically see the energy peel off of him in waves during his last few hours. He was conscious and lucid till about two hours before he left. When I die, I hope I have a similar composure and grace, to be honest.

      It's been over 20 years now, and he wasn't a blood relative, and I'm no longer in the relationship that connected me to him. I still want to honor his memory.

      Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

      by peregrine kate on Mon Mar 31, 2014 at 08:01:23 PM PDT

      [ Parent ]

  •  Also, Sara is trying to get 11 pootie pads (7+ / 0-)

    to send to Phil who is getting a quilt to comfort him while he grieves for his wife who just died of cancer. You can contribute here:
    http://www.dailykos.com/...

    Tracy B Ann - technically that is my signature. If I had Bill Gates money, I'd buy Detroit.

    by ZenTrainer on Mon Mar 31, 2014 at 07:01:05 PM PDT

  •  Good evening folks.... (9+ / 0-)

    Here I am again, second week :)

    DarkHawk98 - love your attitude, and a positive mental attitude means a lot in recovery.

    Thank you, peregrine kate, for the diary on such an important matter.

    As I get closer to the surgery (9 days), the more nervous I get, and I'm thinking that is normal. But some days, I don't feel like I will ever be normal. When I look in the mirror and see the 'bump' it is so small and I can't believe it is anything more than just a bump.

    My dad died from liver cancer, so did my brother. Both I believe was from alcoholism. My step-children's mother died from breast cancer, I have a dear friend who is a breast cancer survivor - she's a remarkable lady, IMO. Heck, any cancer survivor is remarkable!!

    I'm trying to stay positive and busy, and so appreciate being able to come here and talk about the 'c' word LOL.

    Please notice that I use a little c - I refuse to use a capital letter :)

    Thank you once again!

  •  Two close friends died of breast cancer (7+ / 0-)

    And until I'd gone through my own breast cancer I did not have a clue about what they were actually going through.  I think I was kind and caring but unaware (and I have a bachelors degree in nursing - didn't work much in that profession.). Amazingly unaware.

    The 'shift' is hitting the fan.

    by sydneyluv on Mon Mar 31, 2014 at 07:21:58 PM PDT

  •  MrICanDoThis and I (8+ / 0-)

    were diagnosed 16 months apart, so mine served as a template for the two of us.
    I was lucky, sice I found Breastcancer.org ( yes, I knew the second I found the lump), and had someplace to go for info.
    Mr ICanDoThis had the much rarer esophageal cancer, but I knew all the right questions to ask

  •  I've done our genealogy (6+ / 0-)

    And there was only one cancer that I know of in past generations -- my Great Grandfather died of what probably started as a skin cancer.  All the other deaths were cardiac related or due to illness like TB or to accident.

    But in my parents' generation, suddenly there was quite a bit of cancer.  My mother had four siblings -- she and three of them died of cancer.  And my father did, as well.

    Furthermore, there seemed to be a bit of a cancer cluster in my parents' neighborhood in So Cal.  It was a development that was built at the end of the 1960s.  The man across the street had colon cancer and then pancreatic cancer and died one week before my father passed away of colon cancer.  The man in the house behind ours died of colon cancer the following week.  My mother passed away from colon cancer ten months later.  ???  Was it something in the environment?  Or just a coincidence because all these people were of a generation?  We'll never know.

  •  Beside many encounters with family and (7+ / 0-)

    others who had cancer (most of them died of it) I also spent a significant portion of my research career dealing with it.  

    Frankly I would rather die of almost anything else.  I am in good shape but the very idea of cancer makes me feel very vulnerable.

    Cancer became a symbol for me when Norman Mailer wrote his essays on it and its relation to plastic in the 1960s.  

    Now as we grow and grow and consume and consume I see Homo sapiens as a kind of hypercancer on the earth system.

    An idea is not responsible for who happens to be carrying it at the moment. It stands or falls on its own merits.

    by don mikulecky on Mon Mar 31, 2014 at 07:42:00 PM PDT

  •  I'll be back in a few. (4+ / 0-)

    I am remembering that I want to send a few dollars to our MI Dem candidates before the deadline. BRB.

    Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

    by peregrine kate on Mon Mar 31, 2014 at 08:07:21 PM PDT

  •  Been back, replying above--but now I gotta (5+ / 0-)

    hit the hay. Have to be up and out early for me tomorrow, to go to the demo in Detroit!
    Thanks for your comments tonight. I hope everyone has a healthy and peaceful week.

    Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

    by peregrine kate on Mon Mar 31, 2014 at 09:01:06 PM PDT

  •  I got the official diagnosis Friday (6+ / 0-)

    I have adenocarcinomas covering a large part of my liver. It's metastasized from somewhere else, but so far not lungs (clear after 45 years of smoking, 3 years of not), esophagus or pancreas. I have a colonoscopy and endoscopy (both ends) on Wednesday.

    What surprised me is that you can have stage IV cancer (which I probably do) and be totally asymptomatic. So far, the only symptom I have is a little discomfort developing because my liver is the size of Buick. But my liver function blood tests were perfect this year - a couple enzymes were moderately elevated in previous years. I generally feel fine, although fasting and not drinking before tests - about 1 day every week - plus a little trouble sleeping is starting to wear on me.

    The mass on the liver was discovered while doing an ultrasound for my abdominal aortic aneurysm (which is stable and not life-threatening, and, of course, has no symptoms either). My primary care doc got me in to see the first available oncologist, who turned out to be a substitute oncologist for someone who had left the clinic. He scared the shit out of me over two appointments not understanding my aneurysm or the underlying mechanisms (although he seems a good oncologist). In fact one example he gave of a treatment he wouldn't do because of it was ass-backwards. It's not uncommon for doctors to not be up-to-date on my condition, but he was very upset when I suggested I'd like to consult with a vascular surgeon, who understands aneurysms, regarding any treatment plan.

    But I finally got a referral today to the top oncologist at the clinic (per the hospital oncology nurses surveyed by my nurse sister-in-law who works in a different department), and she is affiliated with a major cancer research center and an assistant professor of medicine at a major university, too.

    Another thing I hadn't realized was how seriously I was getting ripped off on charges when I didn't have insurance. The insurance company completed some claims today, and one blood test I would have paid $250 for was 64% less being "in network". So far, overall, what I would have paid about $900 for was $450 using the insurance company's pricing.

    No matter how cynical you become, it's never enough to keep up - Lily Tomlin

    by badger on Mon Mar 31, 2014 at 09:06:32 PM PDT

    •  Wow! That's a lot to process! I know someone who (4+ / 0-)

      had stage 3c fallopian tube cancer with no symptoms at all. She never would have known but she had to have an emergency C section. She likes to say her baby saved her life.

      I like to have a team and I like to be in charge of it and not all doctors are ok with that. Luckily I now have a team who is.

      Pricing sucks doesn't it? I have to double check to make sure I'm only paying what an insurance company would pay. I'm glad you have insurance now.

      Do you have a support group yet? Other cancer patients?
      Like Gilda's Club or the Cancer Care Community?

      Tracy B Ann - technically that is my signature. If I had Bill Gates money, I'd buy Detroit.

      by ZenTrainer on Mon Mar 31, 2014 at 09:18:07 PM PDT

      [ Parent ]

      •  I'm lucky enough to have a lot of support (2+ / 0-)
        Recommended by:
        ZenTrainer, peregrine kate

        My wife and 27 y.o. daughter are great. My sister-in-law who lives next door is a super nurse and the bigger city basically only has one clinic/small hospital and one larger hospital, so she does things like poll the oncology nurses for who's the best doc. Another neighbor down the road was an Army nurse in Viet Nam. The neighbor on the other side of us lost her husband to cancer a few years ago and takes care of our critters when we have to be gone for tests and would do a lot more if needed.  

        My sisters are 1800 miles away. One just lost her husband to Alzheimer's, but he went through melanoma and some other things. We exchange a lot of emails. My other sister has gone through throat cancer and melanoma (and had an aneurysm, like I do), and she's supportive, but a little too over-medicated to be lucid some of the time.

        But all three of us went through my mother's cancers 20 years ago. Our reaction then was to keep laughing, and most of the people I listed have absolutely perverse sense of humor, which I love. This is a natural part of life and I prefer to laugh about it.

        The two worst things are waiting and not knowing about things. The former is hard to do much about, but for the latter, the internet is amazing - PubMed, WebMD, MedScape or just plain old Wikipedia.  I don't know that I'll feel in charge with something as complex as this (although for my aneurysm I've been in charge), but I plan to understand as much as I can and participate.

        And then I get to talk a little to nice people like you.

        So I feel pretty well supported, and with the exception of the one problem with the substitute oncologist, all of the people I've dealt with - docs,  nurses, scheduling clerks, etc. - have been super too.

        No matter how cynical you become, it's never enough to keep up - Lily Tomlin

        by badger on Tue Apr 01, 2014 at 09:31:36 AM PDT

        [ Parent ]

        •  It sounds like you have a great support system, (1+ / 0-)
          Recommended by:
          badger

          all things considered. In your case, having had all these people in your life dealing with cancer (including you, with your mother and sister and brother-in-law) might prove to be a benefit to you.
          I hope you don't have to wait long, and that the news is reasonably good.
          Thanks for talking with us. Glad to have you.

          Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

          by peregrine kate on Tue Apr 01, 2014 at 06:36:32 PM PDT

          [ Parent ]

          •  Had my colonscopy and upper GI endoscopy (1+ / 0-)
            Recommended by:
            peregrine kate

            this morning, or so they tell me. Didn't feel a thing, and couldn't even swear it was done, but I have pictures of somebody's insides.

            One small polyp in the colon, probably benign, but resected for biopsy anyway. Possible Barrett's esophagus on the top end, but that's more likely a pre-cancerous condition, isn't all the way there, and couldn't metastasize. No tumor eating my rectum or something though.

            I'd say that's good news.

            No matter how cynical you become, it's never enough to keep up - Lily Tomlin

            by badger on Wed Apr 02, 2014 at 01:20:09 PM PDT

            [ Parent ]

    •  Oh boy. I am sorry that you have such discouraging (1+ / 0-)
      Recommended by:
      outragedinSF

      news. I hope that your next round of tests isn't so bleak.

      These asymptomatic states are very disconcerting, I agree. There are no good screening methods for the great majority of cancers, AFAIK, and so we have to wait till something bad shows up.

      It's very helpful to have good docs on your case, however. And insurance.

      I will be thinking of you tomorrow and hoping for the best.

      {{{{{badger}}}}}

      Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

      by peregrine kate on Tue Apr 01, 2014 at 06:31:30 PM PDT

      [ Parent ]

  •  I've been the lucky one in my family (5+ / 0-)

    My melanona is or was at stage 3-A when the site and lymph nodes where cut out just over a year back.  So other than a constant throbbing at the scar site, the testing and meds I'm on know every 3 months . . .  and the fear.  The worst part is the fear.  It's getting better now, as I'm almost a year and a half since the initial discovery.  But the fear.

    My fear is deep and old.  I watched my mother die of breast and lung cnacer in 1960.  April 12, 1960 at 4:30 in the morning.  I was 13.  The last time she was home, out of the hospital, she broke the window out of the living room because there was no air in the room.  That started the fear.

    My sister had breast cancer about 8 years back, and had every terrible side effect of the chemo that they list.  My other sister had breast cancer about 4 years back, and is clear now also.  

    My wife's brother almost didn't survive his battle with stage 4-B melanoma 2 years ago.

    So the fear is really deep and really old.

    "We borrow this Earth from our Grandchildren."

    by Arizona Mike on Mon Mar 31, 2014 at 09:23:53 PM PDT

    •  Wow! What do the docs say about the throbbing (3+ / 0-)

      at the scar site? Maybe there is something that can be done. PT or massage or acupuncture or ????

      I know what you mean about the fear. I am often paralyzed by it and it is always there right under the surface.

      I've learned breathing exercises and meditations but many times I just reach for the Xanax. I hope you have something that helps.

      Tracy B Ann - technically that is my signature. If I had Bill Gates money, I'd buy Detroit.

      by ZenTrainer on Mon Mar 31, 2014 at 09:35:47 PM PDT

      [ Parent ]

    •  {{{{{Arizona Mike}}}}} (1+ / 0-)
      Recommended by:
      outragedinSF

      I am so terribly sorry you lost your mother that way, when you were so young. What an ordeal. Were you alone with her? That kind of experience you don't forget.
      Unfortunately, it looks like you have had a lot of scary encounters already. I know, and understand completely, how easy it is to carry that forward into your own condition. I hope you can figure out ways through and beyond. Their fates are not theirs; yours is unique.
      I was terrified, no question, when I had my lung mets detected. I thought I was done for. And then, as it happened, my treatments worked. I do remember the fear, though, and hope that it stays at bay for a while yet.
      I wish all treatments worked for everyone. I hope yours do for you.
      Please feel free to come by any Monday (or Tuesday). We do follow up, as you see.

      Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

      by peregrine kate on Tue Apr 01, 2014 at 06:42:05 PM PDT

      [ Parent ]

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