What would you do?

Courtesy of clipartpanda

Courtesy of clipartpanda

Last week I wrote a post about death. I had learned that an old friend had a terminal disease. He was someone I very rarely see but he made it a point to tell me personally. I was stunned and speechless.

There was a lot of discussion both on and off-line.

Some people said they wouldn’t tell anyone but family if they had a terminal illness. I had several friends who died and afterward I found out that they had been struggling with the illness for six months to a year, knowing the eventual outcome. Yet they never said anything.

Some thought it was a necessary part of the journey for the friend. Closure of a sort.

Some thought it would have been better if he had not said anything.

As for me I was gob smacked.

I am private about my medical issues but I have learned in the last few years that sharing can help. I had some issues that weren’t helped by doctors but through talking to people, I got some suggestions that worked.

When I was diagnosed with breast cancer many years ago, I did not tell anyone but close friends and immediate family. I didn’t even tell all the family. I didn’t want people to worry.

I was having enough trouble wrapping my head around it. I didn’t want to have to help others understand.

Sometimes I didn’t want to talk about it at all and other times I could not stop blabbering. I never knew which Kate would be present so it was easier to keep mum.

I didn’t want the “You’ll be just fine” comments which seemed to minimize it or listen to the stories of people who died. I didn’t know what I wanted most of time. Maybe just hugs.

I am an ostrich. I like to stick my head deep in the sand until the threat passes. It was hard for me to research my illness and harder yet to sleep after I did.

My stomach turned as I read about the various stages and possibilities. At that time, they didn’t have the techniques for accurate predictions that they do now. Some of the process was downright medieval. (Seriously putting a needle in the boob to mark the spot and then cover it with a Dixie cup? Can’t call that high tech.)

A lot of it was through doctor experience. Chemo was a frightening possibility. Really frightening.

But that was me. Others are more open. I worked with a women who told me nonchalantly that she had a non-operable brain tumor. It was stable so as long as it didn’t grow, she was fine. She had it for five years at that point which was more than ten years ago. She is still around.

You can learn things from people and get comfort and support.

Still…it’s an intense decision.

So…if you were diagnosed with a terminal illness, what would you do?

Would you tell? Or not?

Would you wait until the symptoms were obvious? Share early on? Or not at all?

 

 

35 thoughts on “What would you do?

  1. I don’t like talking about my ills, but a few years ago, when I was diagnosed with prostate cancer, I found that I had joined a club (in my view, every man who lives long enough will eventually join this club). Everybody I met in the “club” was willing to talk. This turned out to be a good thing because there are several treatments for prostate cancer, and the treatment outcomes don’t diverge until after 10 years. The result of that is that there is no objective basis for choosing between the treatment options, and talking to everyone you can about their thinking was very helpful.

    So, I wasn’t in the position of withholding news from friends and family, I was calling complete strangers and asking what they had done (and finding people who were willing to talk openly). This is a rather intimate disease, and you wouldn’t expect to be willing to talk about it, but if you had any sense of modesty, it would be long gone before the biopsy was finished, let alone the treatment.

    I guess, despite my normal reticence, I’d opt in favor of speaking because the information and support are worth cost of the embarrassment. Also, there is a website, I think new since then, called Patients Like Me (patientslikeme.com) where both information and support may be available on a somewhat more anonymous basis.

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    • A friend of mine had prostrate cancer and I know exactly what you mean. After I was diagnosed, there weren’t many people I could talk to that knew anything. I had a new therapy and went through it with two other women. That was the best thing. The treatment was twice a day so we could compare symptoms and side effects. Extremely helpful and I didn’t feel alone. Nowadays they have support groups to help. I am not sure if I was diagnosed with something terminal I would tell old friends I never see but we really don’t know what we will do until it happens, do we?

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  2. It’s hard to keep anything like that confidential in my world, I got flowers one hour after checking into emergency and thirty text messages one hour after I was admitted to hospital with just a simple chest infection. But seriously, if I had a choice, I would probably say nothing until it becomes physically obviously or I have to start delegating my work. It is a hard conversation though, you never know what kind of reaction you would get from people.

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  3. Wow…this is quite a post…glad I checked in. I know what Greta Garbo over here would do…dummy up, that’s what. I’d have to tell my friend Chris who’s in charge of all my affairs and then neurotically cross all my T’s. It’s hard for me to talk illness of any kind.. writing about my hearing loss has been big for me.
    You made me think of Nora Ephron who only told her family and how shocked the world was, including her friends. Meryl Streep apparently at the memorial at Lincoln Center had a meltdown on stage so thrown Nora didn’t tell her.
    You know Kate, two of my best friends died, and it taught me how personal illness is…and terminal must be a mother to handle…knowing you’re checking out.
    I’d want my animals, if I had any, on my bed like Joan Rivers and Oscar De Larenta…(spelling). If someone really loved me, I might tell them, but again, who knows. Unless you’re there, who knows what we’d do.
    I’ll pray for your friend.

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    • At the end of the day, I would probably tell my family and friends. I didn’t know that about Nora Ephron. There are a lot of variables, like how incapacitated you get (hard to hide) and how quickly it goes (secrets are easier if the time frame is short). My husband’s poker buddy died not long after one of their games. He didn’t look sick and he told no one although he already knew. Yep, I want my cats on the bed and a big party for everyone afterward. (And they better say really nice things about me or I’ll haunt them forever!)

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  4. It’s a hard question to answer — but I think I’d share with close friends around us b/c we’d need some support.

    On the family side I’d want time with Hubbs, the boys, grand kids, My Mom, Sister and Cousin. The rest? Meh.

    MJ

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  5. I don’t have any useful experience to contribute, but I learned a lot from your post and from the answers others gave. It sounds like it would be best to tell the people who are important in your life. People like to be included and be given the opportunity to help, and the patient needs support. Thanks for a good discussion.

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  6. I’m not sure. My emotional side would want to hide it. My logical side would probably have to be open about it, since I work full time, have a child in school, etc.

    A friend died last year from brain cancer at age 48 (he actually opted out early, if you know what I mean, but he wouldn’t have lasted much more than a month or two at that point). he was pretty open about it and kept his friends apprised. All I could do was tell him bawdy jokes and act silly, which he seemed to appreciate.

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  7. I had an old school chum who re-connected with his favorite people from high school days. I was one of those people. He came to visit Bill and me for a few days and we relived some of our old memories. He helped Bill plant grass seed in the yard of our new home. We went to a local outdoor play and had a picnic. We had a dinner full of laughter and talked and talked. Then he left to visit the next person on his list. About 6 months later his sister called to tell me he died. He knew he was dying when he made all those visits. I will never forget him and how he handled his last days by reliving memories with the people he loved best. That is what I would like to do too but it would take a lot of courage.

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  8. I have a few thoughts on this, from 3 angles.That of sufferer, that of family member and that of friend.
    As I live on my own I would share with my family and friends. Frankly I would need the emotional, spiritual and practical support. ( I received all of these when I had a number of health issues 2 years ago and spent 3 months in hospital. I would have gone crazy without the help of so many lovely people)
    A few years ago I discovered after the fact that my brother had been hospitalized for a very serious condition and then continued to experience symptons for quite a while after. I was so upset and hurt that he and his wife hadn’t told me. I felt that not only hadn’t I been given the opportunity to support them practically and through prayer but felt extrememly hurt that they hadn’t considered me important enough to share it with ( I know it sounds selfish of me but I felt like they were saying that I wasn’t an important part of their world)
    A number of years ago I lost 3 friends in a row to cancers. Two of them I knew about and visited a few times but was caught up in my life and when they passed I felt guilty that I hadn’t been there for them as much as I wanted to. When my best friend was diagnosed I determinied that it wasn’t going to happen again and so I diligently visited and did things to brighten her day like take in fine china, a thermos of tea and mini muffins,and a rose and set it up on her hosptial table when she was too sick to leave hospital anymore to go out for coffee. I didn’t stay long each visit but it was a very precious time and I know she appreciated it and I felt that I had done everything I could to let her know she was loved and supported. One day she requested that I didn’t come, then the next asked me to and it turned out that she passed away that evening. I was so honoured that she had wanted to see me and thank me for being her friend the last day of her life.

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    • Your response brought a lump to my throat. Yes there are different sides. My high school best friend died without telling me (she lived in a different state and was ill for less than a year). I was sorry that she didn’t include me. I accepted it but wished I had known. Thanks for weighing in.

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  9. I am very private about personal medical so I don’t know if I would share a terminal diagnosis with everyone. Maybe I would. There is a blogger that recently posted openly that she has six months to a year to live and is sharing the experience via her blog. She seems to be handling it with humor and courage as she faces the end at 73. We are all learning from her. The blog is “She Kept a Parrot” on WordPress if you want to check it out. She has made it sort of a journal for her grandson, Charlie, who is about twelve years old.

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  10. This one is a tough question, and the only source I can go to is the memory of how I handled having ovarian cancer (twice), whereas both times I also ended up having cancer in my abdomen. The first time around, it came as a surprise, (months and months of ignoring the symptoms – call it denial?), so obviously I didn’t share the news with anyone at all, and afterwards did the chemo and such without telling any friends or family. Living alone, it is easier to keep such things private.

    The second time around, I saw it coming from a mile away, (now being familiar with the symptoms), and didn’t tell anyone again, until I reached the point in my prognosis where it seemed likely it could be terminal. Just before surgery, I let some close family know that I had been taking chemo treatments and was going in for surgery, and that the prognosis wasn’t good. I also purchased a funeral plan and put my affairs in order, and in the end, was glad I had shared the news with family, as they ended up being incredibly supportive and helpful, especially during my recovery period, after the surgery ended up being successful in removing the cancer.

    When the abdominal cancer returned the third time, I didn’t share the news with anyone until a week before my third surgery. This, while one of my sisters was living with me. We had opposite schedules, and I made it a point to avoid too much interaction, so she was completely unaware of how sick I had become. Again, once I let them know, they rallied around. My other sister came in from out of town, and cared for me for several weeks, and then hired people to watch over me for another eight weeks while I was recuperating. The third time around, the recovery period was very long and slow, but eventually, I did end up recovering.

    All three times, my family was upset with me for not telling them sooner, either that I had been experiencing symptoms, had gone in for surgery, or that I had undergone chemo. And all three times, I’m still glad I made the choice of not telling them sooner. If I’m faced with another such decision in the future, it’s likely I wouldn’t share the news with anyone. I just prefer it that way.

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  11. 4-1/2 years ago Michael (my love) was ‘out of the blue’ diagnosed with Amyloidosis…rare and fatal. The first few days? We told our family; less than a week later we shared with our friends. We shared it in our classes…and we never ‘kept it under cover’.
    Shock/surprise was there but the unanimous support and prayers wrapped us in a cozy blanket of caring love!
    We were totally transparent about his condition; some who didn’t know us well were a tad concerned that he ‘might be contagious’…well, after all it is a strange, unusual condition.
    We would do the same again if something ‘fatal’ arose…we do share even with non-fatal things!
    Here’s something though…we have had a tremendous impact on many due to our attitude, our transparency and that’s…well…it’s very ‘way up there’.
    Thanks for this post, Kate. One never knows! Hugs ‘n Love to you, V

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  12. I suppose we don’t know what we’d do until it happens. In the hypothetical we can make rational decisions but who knows when it hits us.
    I think I would tell if it were something really obvious. Some things don’t change ones appearance or even actions. (don’t ask me to name one) Other things can be seen right away and can’t be hidden. (don ask me to name one)
    I said I would tell which I think is different from sharing. Telling is like sitting the family down and saying this is how it is. Sharing is a bit more personal and seems to want or involve feelings.
    I could have passed writing a comment……..but your post really did make me stop and think.

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  13. Yes, I would tell my family, friends and coworkers if I were diagnosed with a terminal illness. The more people praying for me, the better. I also agree with Notquiteold’s comment. Word of mouth can lead you to that doctor or facility you hadn’t heard about.

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  14. Several years ago my husband was confronted with a very negative and serious diagnosis. We discussed whether to share this information or not. He decided that he needed not only support but input. And we were surprised by the quality of the advice that came pouring in. And it truly helped – because it led us to the best medical facility which then determined that the original diagnosis was incorrect. We both feel he would have submitted to dangerous and needless surgery if we had not included everyone in our search for information.

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    • There is a good lesson in your story. After not talking about it, I got some very good advice for a digestive problem (not anywhere near as serious as your husband’s) I had a year or so ago. I literally called up the doctor and told him what to prescribe based on another friend’s input and it worked. We forget that doctors are only human. They make mistakes.

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