When I’m feeling sick, scared, or overwhelmed by my health, I don’t want friends or family bullshitting me and telling me that everything is going to be fine. It only makes me feel worse. In fact it makes me want to smack them.
I got a facebook message today from the wife of a young adult cancer patient whose husband is going through possible recurrence. She said all she can do to support him is tell him she loves him and is there for him. I think she is doing the absolute right thing by being simple, honest, and real.
My friend Lori Hope wrote a fantastic and well researched book called Help Me Live: 20 Things People with Cancer Want You To Know. On the list is “Hearing platitudes or what’s good about cancer can trivialize my feelings.” Kudos to that sentiment.
I totally understand the temptation to want to make things better for someone else who is going through the ringer. I experience this anytime someone I love is down and out. Of course we want to fix it. But let’s be real. Shannon, Lisa Friedman, and my mom and dad are not going to take my cancer away. (I’ve hired good doctors to try to do that instead.) What they give me and what I want is simple, honest support. They tell me they love me and understand why I’m afraid.
A bit of pink wine and really good escapist DVDs can make a huge difference in getting me through the hard times too. (Six seasons of The Wire got me through this past February and March – thank you Avon and Stringer Bell). But best of all is surrounding myself with people who can be honest with me in the face of fear.
When you are having a hard time, what do you most want to hear? Are you comforted or agitated by someone telling you that things will be fine? Do you spend more or less time around some people because of how they respond to you when you are having a hard time?
“Everything Changes is, without doubt, the most forthright, emotionally sophisticated, and plain-old valuable book of its kind I've seen.”
June 16th, 2009 at 4:27 PM
It’s hard for me to feel comforted by people I love sometimes when I’m nervous about cancer. Somemtimes I like when my friends say, “I think it’ll be okay” but sometimes it drives me crazy too!! I also hate when people are overly optimistic. I think that’s bordering on denial.
But I think the thing that makes me feel best is when I can look to other survivors who are out there, kicking ass, and still giving themselves permission to live. It helps me not to feel so alone as a young adult cancer survivor.
June 16th, 2009 at 4:59 PM
I have this doc in Houston who’s supposedly the #1 doc in his field and is the only one with the most knowledge and experience with my type of cancer in the country (if not the world). I was lucky to have found him and gotten in to see him within days of my initial diagnosis. Because of all his qualifications, I put all my hope into this man and I started calling him Dr. Wizard.
The past three times we’ve returned to Houston for tests and meeting with Dr. Wizard, we have walked away with bad news, either it hasn’t shrunk enough for surgery or that there are new growths, etc. Needless to say, even though my family, friends and beloved hubby have nothing else to hold on to, I no longer think of him as Dr. Wizard. I have lost almost all my faith in him that I once had. Naturally, my parents and hubby don’t like to hear me talk that way about him. But I quickly got fed up with them continuously defending him and his Grand Wizardness and whatever. So I asked them to try to put themselves in my shoes, look at it from my perspective, pretend that they have the life-threatening tumor and all they’d seem to get from him was 20 minutes of his attnetion every four months or so, only to tell you that what we just tried didn’t work, over and over again. If it was simply their CAR that kept having to go in for repairs, wouldn’t they lose some faith in their mechanic? That last one made the most sense to them. That really hit home.
Last week my hubby finally opened up and cried with me for the first time that I can remember since diagnosis 1.5 years ago. My immediate reaction was to soothe him and tell him it was all going to be okay but as soon as the words left my mouth, I knew I couldn’t know that for sure and it very rarely helps me (though sometimes it does) to hear that so why was I saying it to him? Later, after lots of talking, I learned that all I need to do is exactly what you and your friend Lori Hope said…just be there for him. Listen to him, cry with him and be present. Once I allowed myself to do that, it felt so much better…more intimate, in a way! We were sharing deeply raw feelings with each other…feelings that we both carry around with us day in and day out but are afraid to show them for fear that we’ll get stuck that way or jinx the outcome we want most out of this fight: survival! But I learned that the opposite came true…it made me stronger to know that he’s feeling like I am deep in there. i feel like he’s more there for me than ever before. and now he knows I can be there for him, too, no matter how much I’m hurting. We are dealing with the same thing!
I wonder how the topics of your posts often seem relevant to issues I deal with at the same time as you post them!? Are you spying on me? :P
Thanks again for the post. Most helpful.
June 16th, 2009 at 7:21 PM
Yep. There are definitely times when I would like to smack somebody who says “Oh, you’ll be fine” or some other useless platitude. I do understand why people do that, but it still doesn’t help. I think we need our friends and family to “get it” and not bullshit us or themselves.
I did stop hanging around a friend who would always deny that my cancer was any kind of problem. It drove me nuts. She would say things like “It’s not a big deal”, or “eat this, drink that and it will go away”. She never offered to help when I really needed it. She was angry with me because I didn’t go out to parties etc. as much anymore. Well, safe to say that friendship died within a year.
There is nothing worse than being on fire and having those around you ignore the flames and pretend they are not there. I stick with real people and I always have. They are the best support, and the ones who I can have a laugh or a cry with and feel understood without really having to say anything at all.
June 16th, 2009 at 7:22 PM
I think you’re spying on me too, Kairol. :) I read your post, Kairol, and feel like I could have written every word myself with one exception, “When I’m feeling sick, scared, or overwhelmed by my LIFE.” I am a 24 year old newlywed caregiver. It is interesting to read your posts Garnet and Marielle because in my relationship, it is ME who wants to feel real and can’t handle bullshit, and my husband who has cancer who is pretending that everything is fine, is not visibly upset by this. I feel alone because it’s not only what feels like all my friends and family who are feeding me this “stay positive, everything is going to be fine” BS, but also my husband.
I very much appreciate reading your blog and book EC, Kairol and I hope no one feels like I’m stepping on their toes by being here as a caregiver and not someone who is sick. It helps me because not only does it help me to read others’ range of reactions to diagnoses/treatment, etc. to accept that people just deal with things differently. But it also helps because I can relate very strongly to many of the psychological aspects of this hell that you all describe.
If there are any other support people/caregivers out there or even those with cancer who are looking to better understand what the caregiver may be going through, I can strongly recommend http://www.youngcancerspouses.com as a website that I recently discovered, which feels real in describing this difficult time and role. Again, I want to emphasize that I do not claim to know what it feels like to be someone with cancer, but I am doing my best to reflect on how I cannot know what that would feel like, what I would do, etc. But it can also be a lonely and very difficult role to be in the spouse role.
June 16th, 2009 at 10:50 PM
Corey (and all other partners and family members of young adults with cancer) - I am glad you are on my blog and reading my book. That is what they are here for. Watching my husband watch me live with cancer, I know that cancer affects your lives as caregivers just as much as it affects our own. And, yes, I second youngcancerspouses.org They have a fantastic discussion board just for partners, no patients allowed. In my book Everything Changes, I have an interview with Matt Herynk, the founder of Young Cancer Spouses. He is an incredibly honest guy who speaks so openly about the challenges of being a young adult caregiver. Your comment Corey makes me realize I should include more posts on here about caregivers and caregiving.
June 17th, 2009 at 3:12 AM
There are six seasons of the Wire? I’d been keeping the fifth in reserve, in case I get really sick again, thinking it was the last season.
June 17th, 2009 at 9:43 AM
Kairol, you not only move me, you blow me away with your honesty (and as Dr. Wendy Harpham said, your brilliant writing)! Thank you for your kind words about my book - hard won words. What I wouldn’t give to have NOT had cancer and had to endure the “Everything will be okay” or “God only gives you what you can handle” or “You just have to think positively and you’ll be just fine.”
“I need you to listen to me and let me cry” is another statement people with cancer want others to know, and Mariel, Garnet, Christina, and Corey, you obviously know that well.
To you, I also say that I am touched by your honesty and moved by your stories. They should be read far and wide, just like Kairol’s book, which is unlike any other - nakedly real, yet also truly hopeful.
Speaking of which, Garnet, I hope you know, and I’m sure you do, that you always have options. I am not in any way denying your feelings, and would not be so arrogant as to advise you, but I want to state that there are other doctors you can see and opinions you can seek. Hope is clear-eyed, said oncologist and author Jerome Groopman, in The Anatomy of Hope, but (and I paraphrase) it still sees a path to a better future. I encourage you to read that book, if you haven’t already.
Kairol, again my thanks to you, for bringing this issue up and giving us all an opportunity to vent and maybe even effect some change.
With respect, love, and always hope,
Lori
http://www.lorihope.com
June 17th, 2009 at 10:14 AM
Shannon read my post last night and said “Your wrong there are only five seasons. You have to correct this. You might get people’s hopes up too high.” So sorry Duncan and all others - I stand corrected, sadly enough The Wire ended after five seasons. Keep the fifth in reserve. Also know that the same producers have a 6 hour series out on DVD called The Corner. Keep hope alive.
June 17th, 2009 at 4:13 PM
First of all can I just say I love the pic for this post!! Made me laugh! Great post as always Kairol. Always good food for thought. I have to say that I just wanted those around me to let me know there were there for me and just let me cry, whine, yell, and be angry if I wanted to! I didn’t get too much of that. Most of what I heard was “you will be fine, don’t worry, etc…) and while part of me liked hearing those things I knew deep down that it wasn’t necessarily realistic all the time. My family especially was like that. And to this day my mom and my brother tell me “why do you worry, your test will be fine.” each time I go for my annual scans and such. I think part of that is their inability to deal with what is going on with me. I think it is their fear of what could happen. I wish though they could just share that with me instead.
June 17th, 2009 at 7:30 PM
Kairol,
Thanks for your comment on my blog. I actually went out and bought your book, per your recommendation. I’ve been looking for a chronic illness book to read and haven’t found one in awhile. I’ve only read a little bit of the book so far, but there were parts that gave me chills because the experience is exactly the same…
Leslie
June 17th, 2009 at 10:48 PM
Platitudes… just talking about them with some ‘also sick’ friends.
I have an ex who ALWAYS says… “you will be fine.” Really? How do you know? is what I would like to know. Especially since he does not know anything about the disease, has never been with me to a doctor visit, has never brought over food, or showed up to help when I was pukeing or wishing I could puke it all away.
What I have realized is that people want only one of TWO answers.
1) I am fine, which means ANYTHING short of hospice care, or someone wiping my butt and feeding me.
2) I am at hospice and then they need to know ‘how much time?’ to know if they need to get a real airline ticket or take a chance on ‘priceline.’ Really?
Most people think in black and white, ok and not ok, single or married. Really, life is more grey and complicated. Some of us aren’t really ‘well’ and we aren’t ‘healed’ and we aren’t ready for hospice… so we are … FINE- a four letter word that means well nothing but ‘I’m not in hospice yet.’
So, to answer your question, yes I get irritated with my fellow humans who haven’t learned to handle messy chronically complicated grey areas like CANCER.
June 18th, 2009 at 7:48 AM
Another great post Kairol. I wrote something along a similar theme a while back on my own blog about societal expectations of cancer patients to be upbeat, stoic and positive all the time when often the reality is that people with cancer often do not feel anything like this. And then there’s the platitudes, the think positive brigade - you are right often people just don’t know what to say - they need to be issued with a guide of do’s and dont’s. The book you mention in this post sounds like it’s worth checking out.
http://beyondbreastcancer.wordpress.com/2009/05/22/pwhen-cancer-doesnt-make-you-brave/
June 18th, 2009 at 11:47 AM
1. Leslie - Thanks for your comment about my book Everything Changes - It is a good reminder for young adult cancer patients that we too can find support beyond the cancer community - such as on patient blogs like yours that deal with lupus and rheumatoid arthritis. (See my post https://everythingchangesbook.com/kairol/chronic-illness)
2. JBBC - The guide of do’s and dont’s is Lori’s book. You have to check it out. I think it is what every cancer patient dreams of - a book they can slap in the laps of friends and family that sums up a lot of what we are feeling and how we’d like to be treated.
June 19th, 2009 at 4:50 PM
“When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.”
~Henri Nouwen~
June 20th, 2009 at 11:01 AM
I was diagnosed with CML a year and a couple of months ago. Around the one year mark of my diagnosis, I started doing a lot of soul-searching. And panicking. I’m on a watch and wait plan. I take my meds until they stop working, and then we try something else and hope it works. I was talking to my bf about my worries; he is an optimist: “Why are you worrying about something that might not even happen?” That made me feel worse. What I heard was “Your fears are unreasonable and silly, and I don’t want to deal with them or you.” It made me feel like he didn’t realize how serious this is, how scared I am, how I need to know that he’ll be there no matter what. On the other hand, I talked to two of my best friends, separately, about the same fears and worries and plans and dreams. To one, I expressed my concern of “I want kids. What’s going to happen to them if I have to go into the hospital long term? How am I going to handle the realities of treatment and a family” - Her response was immediate. She started talking about a website she heard of where my friends can plan what meals to bring, schedule babysitting and carpool information, who’s going to help with housework, etc. Her next comment was, that if god forbid, I die from this, I need to remember our friendship is forever, not just while we live, and that my children and pets would be loved and cared for by people who love them as much as I do. The conversation with my other friend was similar. I am a person who wants to know everything about her care. I question doctors, read my charts, have copies of my path reports and have looked at my own slides. I talked to her about my fears that if I have to be in the hospital, they may have me on medications that will make it difficult or impossible for me to be as thorough with my medical team as I would like. Again, her response was immediate. She started explaining the med log sheets and dr. log sheets she uses at work (she is an advocate/caregiver for the mentally retarded), and how they will work for me. She also started listing resources for dealing with all of my insurance paperwork and charts and everything. Those two conversations saved my sanity. What I heard from those concerned, well thought out, and immediate responses were- “Do not panic. I love you, and have already thought about this. Things might get bad, but when they do, we will still be here for you. And we will be prepared. I know how hard this might be, but we’ll figure it out. We always do.” I know now who I need to seek out when I’m having a bad mental health day, and knowing is half the battle.
Thank you so much for your work. Your book is amazing, and your blog topics are always provocative. Thank you from the bottom of my heart.
<3
July 1st, 2009 at 3:21 AM
Thank you for this post! Because I have an ‘easily treatable’ cancer, Hodgkins Lymphoma, it’s sometimes hard for me to allow myself to feel bad. I will not die, that much has been clear almost from the start. But in the meantime, it’s no picnic either. I have potentially lost my ability to have children, my long hair has fallen out, and on some days I’m almost completely dependent on my partner and friends for housework and other errands, which is very difficult to accept. After chemo I feel weak and unpretty and don’t want to hear “only another 4 months and then you’re done! Look on the bright side, it could be worse”. I know it could be worse. That doesn’t mean it doesn’t suck now. That doesn’t take the mysterious chest pain away. It doesn’t change the fact that I lost a year at university or that all the money I’d saved up to go on a 6-month trip to Asia is now gone. And what does “think positive!” mean anyway? Seriously? All I want is someone to say “it sucks that you have cancer. How can I help?”