Dopers diagnosed with critical illness: advice needed

When you (or one of your nearest and dearest) were first diagnosed with a critical illness, what did you most appreciate from your close friends when it came to support?

I know this will vary from person to person. But looking back when you were still in shock and upset and scared silly, what do you remember as being the most helpful? Or looking back, if there was something you think “I should have asked for such-and-such” what would it have been? What are the things that pissed you off? What are the things that were the most thoughtful and appreciated?

A good buddy of mine was just diagnosed with something really, really scary, and I’m looking for insight. Right now, he’s too terrified and shellshocked to think straight. So any input about what would help him out would be appreciated.

Some people might want their friends to carry-on as if nothing at all is wrong, others might just want to be squeezed in a great big bear hug. I know there won’t be one single approach that would be most helpful, but a variety of anecdotes and experiences about the good things that made it easier, and the well-intentioned things that just made it worse, would be awesome.

Thanks.

You are right that everybody is different, but in this case I’d certainly make a visit. Express your regret and hurt, and as much as possible, let him do most of the talking.

Keeping the fear, hurt and worry inside won’t help with most people, so if you can him to express it, all you have to do is show sympathy and it may well help.

Don’t think there are any hard and fast rules, but you should try once. If rejected, try again later, perhaps by phone, and say you’d like to visit again.

Hope it works out. Others may have more sage advice.

Call him up and invite him to a movie, or a meal or both, maybe some drinks afterward. Make sure it’s a funny movie. Or take him to an exciting game, hockey or football, name your poison.

If this is guy to guy communication, I might start with, “I know it sucks to be you right now, how’d you like to catch a film/game maybe have a little fun?” Spend the evening laughing and joking about average things unless he directs the conversation otherwise.

At the end of the evening, before you part, ask him for reassurance that if he needs anything, like a night out, he won’t hesitate to call you. Do that guy, shuffle look down thing and say, “Cause I love you dude, I’d do anything for you.”

Call him often.

When my dad was diagnosed (terminal cancer), he just wanted life as normal. He said one of the worst parts of the whole thing was the fact that people felt like they should do something for him but didn’t know what to do – so they ended up just sitting in a room together, long after any decent conversation options were exhausted. He wanted to know that his close friends were there for him for whatever he needed, but he didn’t want them hovering over him 24/7.

More than anything, my dad knew and was terrified that his cancer was beyond his control, so he wanted to control something else – the flow of conversation, what was on TV, just little things like that. I think us letting him call the shots and have things his way was what he appreciated most.

Thanks, that’s really helpful.

My buddy is one of the most hilarious people I know, and I can’t imagine he wants to have this dark cloud looming over his head all the time. Of course it’s going to be the elephant in the room, but I suspect that he’s going to be the kind of guy that would find comfort if everything is familiar and “normal” rather than people looking at him like a dying man.

I wasn’t living in the country when my uncle was diagnosed with cancer, but my sister said he preferred to just say, “Don’t worry about it, since I’m going to beat it, it’s just life as usual” and he found it annoying when people tried to be too “helpful” or made it too obvious they were trying to “cheer him up” because it drew attention to the fact that he was sick and it made him feel self-conscious. He liked it best when people visited and laughed and goofed around like they normally always did, because he could forget that he was unwell.

Sticking around long term is needed. Most people stop all involvement after a couple months. Showing up for the sake of somebody showing up everyday is great. You won’t always do something when they feel bad, but 10 or 15 minutes at lunch or so helps.

I heartily endorse this - the biggest help for WinkieHubby while he was on dialysis awaiting a transplant was that his car guys would still come over and hang out, working on cars in our garage. He could help, or sit and supervise, whatever he felt up to - and it was a slice of normality to take his mind off of the medical crap and let him just be him.

I also recommend finding out what household / other routine-type tasks he might not be feeling up to that you could help with. Pulling weeds, vaccuuming, cleaning the gutters - even though you can’t help with the medical treatment, these things you can help with may relieve some related stress.

Seriously? Why do people do that? That’s unimaginable to me!

Is there a psychology behind it? Like once the person starts to deteriorate it’s “too depressing” or “too demanding” or something? I honestly can’t fathom not being there when things get rough.

When it comes to that (right now he’s still a young guy who plays baseball on weekends, he doesn’t even know what stage he’s in), what is the best way to go about offering help? I think I’d be afraid of making him feel like he can’t carry his own weight, or that he needs “rescuing” with basic tasks. Eventually, there may be a time when he really needs help, but I’d want to be sure I’m asking in a way that doesn’t make him feel defensive.

I remember when my grandpa was too feeble to carry his own luggage, and my sister said “Let me get that for you.” He looked utterly crestfallen that he couldn’t “be the man” and a young woman had to carry his bags for him. He never said a word, but he looked truly pained, like he’d been emmasculated. He’d just had a stroke, but still didn’t want to admit that he needed help with basic stuff.

My friend is undoubtedly headed for surgery, and some kind of chemo/radiation regimen. He will need help at some point. I want to be able to offer assistance in a way that’s thoughtful and won’t make him feel disheartened.

I should have said what I REALLY wanted, even if it sounded tacky.

I wanted attention and condolences and support and love. I had none, because I was too chicken to ask for it.

I have sarcoidosis now(well everyone thinks so), but before that i knew I had an incurable (but not certainly terminal) cancer. Shoulda said something, cause it seems tacky to bring it up now.

I probably would have met a lot of wonderful people and I bet they would have been marveously supportive.

Just spew it out. The people who will care will … care. Dont worry about the people who dont care. Dont worry about offended the uninterested people.

Vent your heart out, and i bet you’ll find tons of support.

Look at nursing homes as an example of how people deal with illness long term. Out of sight, soon means out of mind. Once you don’t interact with someone much, it’s easy to put off a visit, and then finally drop all visits. Illness will make a few people closer and most people indifferent. I’m hopping you’ll be one of the people that don’t stop visiting, and that my pointing this out helps you decide to visit when you think it doesn’t matter if you skip a visit.

One thing you can do is just pay attention when you spend time together. As a caregiver and not the patient, I had a lot of trouble asking for help - but I was good at talking about what I felt like I needed to do but just didn’t have the energy for. A friend said to me “I can tell you’re stressed about the weeds in your flower beds, why don’t I come pull them for you so you don’t have to worry about it? I like to pull weeds!”

You can also try the direct “I love you and I really want to do something to help. What chore can I take care of that will help you feel less stressed / give you one less thing to worry about?” You could even frame it as all about you - “Please give me a task that will help you, 'cuz I’m going crazy with not doing something for you!”

I was gonna say…a good friend of mine got breast cancer a few years ago and after awhile she really got fed up with people asking her all the time how she was doing. Of course we were concerned.

Now I am not a real serious person,* so I was the one who gave her all kinds of gentle abuse. I was the one who bought her a really inappropriate t-shirt (black, with tassels in the appropriate place and the legend “50 but still swingin’”). And that kind of thing. Just the ticket for a double mastectomy patient, right? She said she appreciated it, she’s six years out now with no recurrence, and we’re still friends. As far as I know she’s never worn the t-shirt.

*Not that I mean to suggest I wasn’t really concerned. I was.

Just be there. Call, visit, listen if your friend needs to talk and talk if he doesn’t.

I recently lost a friend - 6 weeks from diagnosis of ovarian cancer to death from pneumonia. Chemotherapy hits some people harder than others and he may need your help. Offer to set up a schedule of friends to sit with him if he needs it. Bring him different foods to tempt his appetite. Silly books, hats if his hair starts falling out, potted plants - the implication being that he has to stay alive to take care of it - anything you can think of to help keep his spirits up.

My friend was never alone from the time she was diagnosed. Even when she was in ICU we went in there actually more often than the rules said we could, and camped out in the waiting room the rest of the time. She had told a couple of us she really didn’t want to be alone and we made sure she wasn’t.

Ask your friend what he needs/wants - and keep asking as treatment progresses. He may not think he needs help now and discover on down the road that he does, but is too embarassed to ask for it. So keep up with him.

Just be there.

Don’t forget the partner! He or she will be under great stress too, and may be taking on a very large burden of care. ‘Me’ time will be in short supply. Take him or her out while the rest of you clean and tidy. Or pay for a cleaner. Have a dinner party at their house where all the guests do all the work and provide all the food and drink.

I know a guy that was sleeping in the vets parking lot in a RV in winter. His wife was in the hospital. It was freezing cold in there, so the ill person isn’t the only person that could use help.

Don’t codle him. I hate when people are like, “Are you okay? How are you feeling?” If I need something, I’ll ask.

If he’s in the hospital, go visit. There’s nothng more boring than being trapped in a hospital room with nothing to do, and only nurses to keep you company. Bring a board game or something.

I have to second this. I had many friends turn up the first couple of weeks but when they realised this was going to be a long term illness, I rarely saw them. My partner walked out about this time too as he didn’t want to be burdened with having to care for me. It was probably different for me as I was confined to my bed or hospital and terribly ill so not much fun to be around. I received many a phone call with offers of prayer from my well meaning Christian friends which I didn’t appreciate because what I actually needed was practical help. At that time I wasn’t able to do much of anything for myself and an offer of a meal or an hour of cleaning would have been most welcome. What annoyed me the most was a gift I received from a friend, a poem she had written on a wall plaque. It more or less said that I would never be the way I was before, would never again be able to do the things I love so I should start getting used to the new me. She meant well but I hated that thing. Even if it was fairly accurate it’s not something I wanted to hear or be reminded of daily.

Regarding your friend I’d like to echo what others have said, visit regularly, stay positive around him and try to have fun.

I don’t have much experience with long-term illness in my family members, but I have dealt with a couple of people who’ve had sudden catastrophic losses. They lost a family member (a child, a mother, etc.); your friend is losing himself.

Be there, but don’t hover. Ask to be told if he goes to the hospital. Offer to go to a doctor’s appointment to take notes if you can - people who are coping with illness frequently need someone to listen to the doctor and pick up stuff they didn’t hear.

Offer practical help, preferably in a way that does not reflect badly on his own ability to perform his duties. (I’m female, so a lot of stuff that I’d do - household duties and such - won’t work as well with male to male interaction, maybe.) When my friend’s daughter died (of surgery to correct a congenital heart defect) I sat with her and helped her shred insurance forms with her kid’s name on them. If I remember, you have a fiancee? Maybe she would be willing to help with some things on this front.

And I think this is most important - don’t dwell on the diagnosis, but don’t pretend it isn’t there. Do not shy away from talking about death or illness, if it comes up in conversation. Whatever your friend has is now a fact of life for him. If you pretend it isn’t there it’s the elephant in the room. With same friend, I did not shy away from mentioning babies, childbirth, and children if it came up in conversation. This is something that will never go away, so to make it part of the new normalcy is important. Not in a non-sensitive way, but avoiding topics is just as obvious as mentioning them outright. (Same friend actually thanked me for taking this tack and never looking awkward; she said it helped to not have to think about it acutely, since the subjects just came up.)

Echoing what others have said, be there for fun, don’t ignore the diagnosis, and try to make some practical difference if possible.

Let me echo this - I know of what I speak.

My wife, a perfectly healthy woman of 50, went in for her first routine colonoscopy. Aside from the preparation for the thing, neither of us thought much of the procedure.

The gastroenterologist found a couple centimeter lesion that, on biopsy, was shown to be cancerous. Susan went in for surgery and had about 1.5 feet of colon removed.

She handled the news, the waiting for the test results, the waiting for the surgery, the entire situation much, much better than I did. I kept up a brave front but deep down I was an incredible mess. Instead of letting people help out with stuff, I continued to do everything as if nothing was going on. I ended up an irritable, frazzled, emotional son-of-a-bitch. Not good for either her or me.

So take care of the care givers if you can. Everyone benefits.

I’ll echo just being there. Call or drop by with something to eat every so often.

Let your friend talk. When I had cancer, I was scared. But I didn’t want to unload how I felt on my wife, because she was even more scared than I was and I didn’t want to make it worse. It helped to have friends I could talk to and break down in front of.

Don’t be afraid of physical contact. Too many people are afraid to touch someone with a nasty illness. It’s a time when a hug can make a big difference.

Some people need to be coddled and nursed when they’re sick. Others, like me, just want to crawl off in a corner alone. For a couple of days after each chemo treatment, I didn’t want to see anybody or talk to anybody. I just wanted to curl up in bed and try not to vomit. THAT’s when doing something for the spouse helps. I could just sleep. She couldn’t. Bringing by some food or calling her to chat was greatly appreciated.

The things that bugged me? Calling me a “cancer victim” was one. I hate the victim mindset. There’s an implication that this was someone’s fault, and the only possible person I could blame cancer on was myself–not a good thing to do. The other option was to blame it on God–also not a good road to go down. Cancer wasn’t who I was–it was just something I had.

I also didn’t appreciate the reams of reading material on herbal and holistic remedies. I know their hearts were in the right place, but this simply wasn’t a time for experimentation and I didn’t feel like reading all of that. I was getting chemotherapy and monoclonal antibody treatment, and I couldn’t have kept a foul-tasting herbal tea down if I’d wanted to.

So in a nutshell; show up, let your friend talk, do something for the spouse or SO, and maybe help out with a household chore. Bringing food is always good.