So what do I tell friends and family after finding out that I'm likely terminally ill?

[bondwooley]

Last edited Wed Jan 17, 2018, 02:22 AM - Edit history (2)

Two weeks ago I couldn't tell if I had the flu or perhaps Bronchitis, which I'm someone prone to get. I didn't have bronchitis, but x-rays showed a lot of weird things going on and then a CT scan showed even more weird stuff. And none of it was going on six months ago when I had a lot of routine tests.

There's no course of treatment until even more test take place next week, which might reveal something they can identify and treat. So, I'm in limbo.

I haven't told friends or family about this because -- well, I won't be able to answer their questions yet. So do I wait until I can answer? Or just give them a heads up and brace myself for calming them down with my last ounces of energy?

Thought maybe someone here might have some food for thought.

Fellow dem-U folks : your thoughtful responses are incredible helpful. Please keep them coming. You are all elaborating and making clearer an internal discussion that need a shot of objectivity if I'm going to move ahead at a reasonable comfort level. I will get back to each and every one of you. So keep the advice and thoughts and personal stories coming if you're comfortable doing so. I am reading every one of them and learning and finding hope in all of them. I can't thank you enough. And if I haven't gotten back yet, I will!

[GreenEyedLefty]

1. I am very sorry you are going through this.

I wish I had some sage words of wisdom but it's probably best to wait to tell friends and family - unless you have someone(s) you can confide in - until you have a more definitive diagnosis.

Sending big hugs your way.

[bondwooley]

15. I have

told a very close friend which is good but I think I think that might be enough ... so what you said is my first inclination.

[Lil Missy]

2. You should share with family and friends. You need their support now.

[bondwooley]

16. Hesitant. But your vote is appreciated an duly counted! nt

[PoliticAverse]

3. If you are specifically asked you could just tell them they are doing more tests

and that they'll know more next week.

> with my last ounces of energy?

Best wishes to you, how are you feeling?

[bondwooley]

18. Actually

there probably are some people I can say that too.

Last ounces of energy just means that I am mentally exhausted and trying to reserve some for myself.

[mythology]

4. Start with your closest friend or family member, in person if possible

Accept whatever emotions you have, there isn't a right way to feel or to do this.

Personally I would wait until I knew more, but again, there isn't an instruction manual on this sort of thing. And there is certainly something to be said for having a friend to go with you for the further tests, especially if they expect to have a diagnosis at the time.

Maybe it's not particularly helpful to say go with your gut, but I think in this situation, the decision is so personal that it has to be what feels right for you.

[bondwooley]

33. Thank you

I am amazed at the number of helpful responses and I will get though all of them, and each deserves a personal note and thanks, but given my energy level right now I'm sending this kind-of form letter to everyone so they know how much their words and thoughts mean to me.

[Croney]

5. You havent been diagnosed with anything yet?

Or am I misunderstanding? I hope you find out that your malady is treatable and curable.

[bondwooley]

34. just a range

of potential diagnoses. none good but bottom line is there is nothing conclusive. that's why my conundrum is.

[onecaliberal]

6. No advice only big hugs.

[bondwooley]

35. :-)

[democrank]

7. Trust yourself to find the answer.

I send you hope, strength and a hug.

[JI7]

8. But you have no idea if you are, right ?

Just tell them there is something and you are waiting to find out test results.

Once they already know you are waiting for test results it will be easier to talk with them about it.

[bondwooley]

36. Thank you

I am agreeing with that right now. Also:

I am amazed at the number of helpful responses and I will get though all of them, and each deserves a personal note and thanks, but given my energy level right now I'm sending this kind-of form letter to everyone so they know how much their words and thoughts mean to me.

[KT2000]

9. just read a book

called Life After the Diagnosis by Steven Pantilat MD. This is a very good book about living with a terminal or serious chronic illness. It covers just about everything a person in this situation may be concerned about. He is actually the leader in this field of medicine.

Concerning you question, he advises that people inform their friends and loved ones as you need support. He cautions that responses may vary and some may not be what you want but he says there will be supportive people in your life.

This book is helpful for the patients and loved ones - lots of practical advice about making decisions, legal aspects, how to communicate with medical professionals etc.

Life After Diagnosis: Expert Advice on Living Well with Serious Illness for Patients and Caregivers, by Steven Z. Pantilat, M.D., Da Capo Press, 44 Farnsworth Street, 3rd Floor, Boston, MA 02210, ©2017, $16.99, 352 pp.

[bondwooley]

37. I have made a note of that and

I am amazed at the number of helpful responses and I will get though all of them, and each deserves a personal note and thanks, but given my energy level right now I'm sending this kind-of form letter to everyone so they know how much their words and thoughts mean to me. But I have printed out the info.

[lunasun]

10. a friend of my said to me "I am very sick so are you sitting down?" Also she didn't tell

anyone until she was going to the specialist doctor and knew all the details and had time to process everything herself

When she told me, I said that i did not know what to say

and she said she knew she could count on me being honest, and she was so sick of hearing about prayers for her and good vibes so i guess expect a lot of that.
I do not think it would bother me if they said they would pray for me in that situation even though i am not religious but I guess it was overload for her and felt better with someone saying they had no words
That was 3 years ago and she survived against the odds but is not recovered and still in limbo but did survive

Take care of yourself that is #1, you'll get around to telling others when it feels right for you, not a priority really

[bondwooley]

38. That is an important story to me

Thank you for sharing. And...

I am amazed at the number of helpful responses and I will get though all of them, and each deserves a personal note and thanks, but given my energy level right now I'm sending this kind-of form letter to everyone so they know how much their words and thoughts mean to me.

[BigmanPigman]

11. When I was finally properly diagnosed last year

my family knew I was sick but I am always sick since I was a teacher and had all sorts of things that were strange like mono at the age of 44 and pneumonia (lost 1/3 of my blood internally), chicken pox, etc and upper respir. illnesses all the time like you. After I checked myself into the hospital and had to stay 4 days since I was is severe pain in my abdomen for 6 months I was finally told they knew what I was complaining about. I told my sister but told her not to tell my parents. My dad asked her and she told him but my mom doesn't know. After my friends didn't hear from me for 6 months I wrote them each a short letter. My neighbors were told by me right away since I may need their help. We don't talk about it much, only when the ACA repeal was going on and finances (for my needed surgeries to temporarily reduce the severe pain until I die) became a serious issue. I also made a very iron clad trust and I needed my family's social security numbers. I am not in severe pain again yet but it is coming at any time so I have been getting ready mentally and getting my affairs in order and going through my stuff. When I am in too much pain to stand it and can't afford the surgeries my family will be ready and my sister has been very supportive and will follow through with my wishes (which is also in my trust...to be definite). She said that my family is willing to go broke paying for my medical bills but I will not allow that to happen. We all feel the same way about life, death, religion (none) and we are all very realistic and practical so that has been very reassuring. We aren't one of those families that fights over stupid stuff or pushes weird ideas and theories on each other. We usually agree on things and respect each other's decisions.

I don't know if this helped or not. Everyone is different so do whatever feels right for you. You will know what that is better than anyone.

[femmedem]

19. I had no idea.

I don't think we've ever interacted much on DU but your posts and your activism inspire me--and now even more so.

[BigmanPigman]

20. I am doing what I can while I can.

I can focus my energy on getting the moron out of office and into a padded cell in prison for life. I knew he would get elected before I was diagnosed (I knew it instinctually ever since he went down that gold escalator and no one believed me). I was in a ton of pain at the time and couldn't do much but I am not in pain right now so I feel I need to take advantage of it. Then I can die in peace. That is my personal goal.

[bondwooley]

40. Oh wow

that might be the most encouraging thing thing I've heard all day ... that maybe my paper trail of thoughts an opinions and activism have not gone to waste. Thank you. Honestly, I think my blood pressure just came back to level.

[femmedem]

67. I'll be looking for more of your posts

and hoping for good news. But if it isn't, I'll be hoping to be part of a community where you can share what you're going through.

And yes, your activism matters. Mr. Femmedem and I are about to watch I Am Not Your Negro, the PBS movie based on a book James Baldwin never finished. Very few of us are James Baldwin, but we can aim to inspire each other to be our best, most giving, most ethical selves, as you do.

[pnwmom]

22. I am so sorry you are going through all this, Bigmanpigman.

And I know exactly how you feel about telling some family members and not others. I did the same thing when I was going through a serious issue.

It's good that you are setting things in order, but I hope that you have many more good years in front of you.

[bondwooley]

39. This helped a lot

and I can't tell you how much I appreciate your candor.

[babylonsister]

12. So... you're not dying afayk, but are worried about the possibility?

I say talk to loved ones and don't borrow trouble.

[bondwooley]

41. Actually

I don't care what the diagnosis is ultimately as long as I know. I'll know how to face that. I've been through a lot. And feel like sometimes it's good to say hey, here's what going on an here's what is gong to happen. It's just that I don't know if in this situation, where I obviously have something nasty, I should tell loved ones that they should worry about me when I can't say they should send good vibes about something the doctors have diagnosed concretely and have a plan of action.

[alittlelark]

13. If u r truly terminal plan and execute a 'going away party'

...make it the best of the best so your loved ones remember you as you ARE and always have been.

If u r not terminal.... throw a party anyway!!!

[bondwooley]

42. I love that. nt

[applegrove]

14. Friend of my sister got diagnosed with terminal cancer at 23. She called

everyone she was close to once she got the diagnosis and told them all, and there were a lot of people, that she was upset but had had a wonderful life and repeated "just a wonderful life". She took the initial horror in everybody and walked them through to her acceptance. I'll never forget that. She did it for at least 30 very young, very upset people. Probably more. In a few days. And she had brain cancer. She had years left with her friends but took responsibility for getting them through the initial shock. Very impressive. She was a great egg.

[bondwooley]

43. She was a great person

and I will find that strength. The person who you refer to could be my sister, who went though a similar ordeal.

[applegrove]

52. I'm so sorry you are going through this. Sorry about your sister. I'm going

to hold out hope that you will be okay. Vibes to you and yours.

[marlakay]

17. My advice, tell them

My father didn’t tell me he had cancer not wanting to upset me until it was real bad.

I would give anything to know and change my schedule to spend his last months with him.

He had no way of knowing nor did i but right after he told me i had emergency back operation and was told I couldn’t drive for months, he was 4 hrs away.

By the time i finally got to his house as soon as i could he could barely talk.

[pnwmom]

21. Do whatever makes YOU feel better. Period. If you'd feel relieved to tell someone,

then do so. If you'd rather wait till you knew for sure what you're dealing with, then wait.

And just because you tell one person doesn't mean you have to tell another.

For example, I told my sister when I had a cancer surgery years ago (it went fine and no sign of recurrence). But since my mother lives across the country and I didn't have to tell her, I didn't. I didn't even tell her that I was having surgery, because I knew her worries and concern would just make BOTH of us feel worse, with no upside. So I told the sister living near her, but not my mother. Years later, Mom, sister, and I are still fine -- but I would do the same thing if I develop another serious illness while Mom is still alive. If I told her, all the force of her worry would just get me down. And I don't have to, so I won't.

[runtel]

23. Whistleing in the wind

Please please try to calm down.There are so many things it could be. I have been in your shoes. They called me at 10pm and told me to be at the hospital the next morning after a bad chest xray. I had to go through the lung biopsy and wait 2 weeks for the results. I ended up having a disorder called sarcoidosis. Your symptoms sound exactly like what I had. I don't want to diminish what you may be facing. I wish you the best and hope my words have brought you some comfort.

[pnwmom]

28. I think you meant to reply to the OP, right? Not to my reply.

Don't worry, you'll get the hang of it. Welcome to DU, runtel!

[runtel]

30. oops!

[SomethingNew]

59. Very similar thing happened to me.

Went in for a cough and trouble breathing. After an X-ray the doc told me I likely had lymphoma and heavily hinted that it was probably in such a late stage that there was nothing to be done but I should go get checked out more thoroughly anyway. Absolutely horrible beside manner. Called parents and family who came from hours away. Multiple scans and a biopsy later, turned out to be just sarcoidosis.

OP, I hope your situation turns out similarly. However, if I were you I'd contact at least immediate family and talk to them. They'll need help coping with whatever comes and so will you. That way you can be there for each other.

[bondwooley]

44. You sound

like me. That's exactly where my gut settles in this case.

[pnwmom]

51. Yeah, your OP sounded familiar.

So follow your instincts. Only tell people if it will be HELPFUL to YOU. No one else needs to know. And only share as much as you want.

And the best of luck to you! I'll be pulling for you.

[Hassin Bin Sober]

58. My neighbor/friend just had breast cancer and a mastectomy but didn't tell her parents.

I know why she did it. I suppose I would have done the same when my parents were alive.

[pnwmom]

61. When my daughter told me about a serious health crisis,

and asked me to come out there to help, I felt deeply grateful that she had included me. Somehow, she trusted that I would help lift her up, instead of pull her down. Unfortunately, it's the opposite with my mother. I know she loves me deeply, but her concern feels overwhelming. It feels like she needs me to be strong for her, so I am.

[Hekate]

24. KnR

[TheBlackAdder]

25. I had lab scans as part of an employee health check, machines were so old, it had massive spots.

It was days before Thanksgiving, and I went home and cried, as I was recently married and just had my first child. I couldn't get an appointment with a specialist for almost a month, right before Christmas. I cried multiple times a day. That doctor said I needed to go home and schedule an appointment with a pulmonary specialist. I went to a top-notch specialist ($$) who had cutting-edge equipment and there was nothing. The fucking lab my employer sent me to had shitty equipment. A good x-ray machine will be light blue and you can actually see all of the blood vessels in the lungs as slightly whiter. The crappy x-ray I got was one of the older black images. Same with a CT, it's nothing but a fancier x-ray machine that nukes you more. Those images should by crystal clear images too, except where there are lesions or other masses or foreign body embeddeds.

Now, I have chronic bronchitis, along with my nephew. I used to have to take z-pac 10 antibiotics or something similar. A 5-day dose wouldn't help. My sister-in-law, who is a military spouse, turned me onto elecampane, I take 30 drops 3x a day and use a Vics steamer inhaler w/menthol pads 2x a day, and take DM Max every 4 hours, never missing a dose, even at 2AM, and also guaifenesin 800 throughout the day. My chest infections last no more than 2 days. When my kids would get sick with a chest cold, they recover to they are at school the next day or the day after. Oh, I haven't had to take an antibiotic for 7 years now. The elecampane does the trick.

You need the support of your family or close friends, at least. It's scary and it does no one any good by holding it in, especially you.

[bondwooley]

46. This backs up a theory

I have. I have to figure out what elecampane is.

[TheBlackAdder]

63. It's freakin great! Just buy from a reputable Health Foods store, nothing from Amazon or eBay, etc.

Whole Foods doesn't stock it, but can special order.

Right now, I have two brands, Nature's Answer and Herbs etc. "Lung Tonic." The Lung Tonic is a blend of elecampane and a few other herbs. I'm starting to dig how it works when a bronchitis flair-up occurs.

Elecampane, kind of has a dirt/root taste to it. Often times, it tastes like the center part of a carrot.

===

It comes in 1oz and 2oz bottles with an eye dropper on top. You get an 8oz glass of water and take 30 or so drops in it every 8 hours. The color varies, but generally is a dark caramel color. The taste is odd though. Some might have an alcohol feel to it, depending on how and what they use to dilute it.

[Algernon Moncrieff]

26. First of all, I wish for you skilled physicians, the benefits of Divine Providence, and luck

As for what to tell your friends: Do you want a private struggle? Do you want your friends with you at the risk of being somewhat of a semi-public spectacle? Only you can make that call.

My view: tell the truth. The truth generally works.

[bondwooley]

47. I'm thinking

thanks to this thread and it's help in letting me to think, well, in response to what you said, I think that I should tell some close loved ones and have them suggest when and to whom I say what in terms of other people who would care.

[radical noodle]

27. I think you should do what makes YOU

most comfortable. If you want to talk it out with a few people, do it. If it bothers you to do so, wait.

We will all hope that whatever it is can be easily treated.

[Phoenix61]

29. Limbo land sucks

It's never a happy place. We always assume the worst. That being said, lean on those few/one great friend you can really count on until you know what is going on. I wish you all the best.

[MLAA]

31. I wish you the clarity you need to decide what is best way forward for you ☺️🌞🐶🐱

[bondwooley]

48. Thank you!

[Jim Lane]

32. All I can do is tell you what I chose.

My blood work showed tumor markers and the MRI showed a mass at the major lymph node in the chest. The tentative diagnosis was lymphoma. The doctors didn't go into detail about the consequences but, what do they think, I don't have an internet connection? It was easy to find out that what I probably had was terminal, with a life expectancy of 6-8 years IIRC.

The plan was to do a biopsy to confirm the diagnosis. The biopsy disconfirmed it. I had a completely different form of cancer, which, by coincidence, had happened to lodge itself right next to a lymph node. What I had was treatable. I voted for Gore/Lieberman in the morning, checked myself into the hospital in the afternoon to begin chemotherapy, and here I still am, cancer-free, all these years later.

During the couple weeks before the correct diagnosis was made, I made the choice not to tell anyone. I just didn't feel like going through explanations that involved words like "probably" and "tentative diagnosis" with further procedures pending. To me it made more sense to wait until I could give a complete story. Obviously, because of the subsequent course, this choice worked out better for my family and friends, as well as for me.

Whatever you decide to do now, I hope your story has a happy ending, too!

[bondwooley]

49. This is it

exactly! -- "I just didn't feel like going through explanations that involved words like "probably" and "tentative diagnosis" with further procedures pending"

i feel like I have enough questions for me and my doctors. I don't want to console other people right now, regardless of their honest concern. I need to clear my head rather than worry about what other people think when I don't even know what to think.

I'm glad you're cancer free and I think you for the good wishes.

[PoorMonger]

45. Tough man, my heart goes out to you.

I think if it were me I would start by confiding in a single individual. Again, for me it would be my older brother most likely. Others it would be harder to prepare for and i’d need to lean on that support. No idea if that helps but It’s the best I’ve got. All the best.

[bondwooley]

50. yeah, it does help

... and I decided that I will tell a very close friend who has been though a lot with me and vice versa. He is going to be concerned, but I think I count on him to not go batshit thinking that he's somehow protecting me. He seems more interested in making sure I understand what's going on. It's always easier to to understand what what is happening to someone else because you have a clear head. It's hard to learn biology and study yourself when the reason you're doing it is frightening.

[sprinkleeninow]

54. There you go. Made your decision. A good one, it appears.

All the best to you, my 'relative' in humanity.

[bondwooley]

55. :-)

[Gothmog]

53. You will be in my prayers

[bondwooley]

56. While I am not

a religious person I do feel that prayer, good vibes, whatever one wants to call does actually call upon the cosmos and redirect energy to where it's needed. So I thank you with all sincerity.

[sprinkleeninow]

57. Gracious of you.

You will be in my intercessions also. 💕

[Stanley Roper]

66. Whatever you find out

just fight, don't ever give up.

One ounce of pure will can achieve more than all the prayers in the universe. That and having love in your heart.

[Doodley]

60. I am very sorry to hear you are so unwell. I hope the results will be better than you expect.

Do not assume the worst until you know more. Easy to say, I know. I had a friend of the family who would never talk about his terminal illness even until the end. In contrast, I spend a lot of time talking about my toothache. My wife has a lot of illnesses that cause her chronic pain, and I know it helps her to talk about it. We are all different, and in my case, I have evolved from somebody who would not share anything to somebody who needs to share. Based on your posts, I think you need as much love and support as you can get, Go for it. Do not hold back. It is what true loved ones would want you to share.

[JNelson6563]

62. Had similar experience w/pneumonia

They did x-ray, yeah, looked bad. They were real scary talking to me. I later went back for follow up, was healthy again. X-ray clear, clean bill of health. I was so glad I had said nothing to anyone.

I hope the same thing happens to you.

[raven mad]

64. Wait. I know, it's hard to do.

You are SO worth it to your friends here. Find out for sure, let family know the truth, and know that we are here for you.

[Stanley Roper]

65. tell them the truth

I found out who truly matters to me when I was in a coma, literally minute by minute whether I was going to die or not. Multi-sytem organ failure, sepsis, last rites, all that shit.

The people who truly matter to me were there with me in ICU at what was supposed to be my deathbed.

Not very many people.

I call my catastrophic illness and that turning point as my "Great Clarification."

The people who really love you will understand and they will be there with you and for you.

[hunter]

68. We have awesome wakes in our family tradition.

I would insist on that.

Leave the ashes to those with the best stories, they'll find a good place to dump them.

I'll land in the Pacific Ocean, but not today.

Until you are actually dead you've got time.