When Kyle and I went shopping yesterday a few things were said to me that were not meant to be hurtful, but honestly, most people don't know what to say. Or better - what not to say.
When something happens to someone, like say having cancer or when someone's close family dies, I think we don't really know what to say. It becomes awkward and then uncomfortable.
I went out for the first time yeterday as a bald cancer pateint. Before I shaved my head, I did not feel like someone with cancer. Now I do. It is just as uncomfortable for me taking off my hat as it is for you.
So there is a fine line to walk. Acknowledgement is key. Please don't ignore the fact that i have cancer. Please don't just pretend it does not exist. It makes it more uncomfortable. However, if we do talk, I don't always want to talk about cancer. I do want other things to talk about and hear about. I do want to hear about your kids, your wedding, trips, great grant you just got, article you had published, etc. This is not going to take over my life, but I need your help to do that.
This is not meant to be mean... I know people don't know what to say... some things are more helpful than others:
Things that are helpful - and all of these have come from my friends and family:
1) "I am very sorry you have to go through this." This is the best statement said to me. It is awful... and thank you for recognizing it. This is honestly one of the best things you can say... it shows true empathy.
2) "How can I help?" and then actually do it. This is the best. I have such wonderful friends and family who have done so much. But don't say it unless you actually mean it.
3) Just acknowledge the struggle. Cards, email, phone messages and all words of support are appreciated. I keep them all. On bad days I look at them for strength.
4) "how are you feeling" But only ask this if you really want to know. Some days I am good, some days not. If you don't want the long winded answer - ask this on the days right before chemo. If you really want to know how I am doing, you may have to sit down while I really tell you. Don't ask if you don't have time to hear the answer.
5) "Let me know what I can do to help". This is a great one to hear, but it is what everyone says. it is like the standard uncomfortable ending of every conversation I have about my fight. So... please only say it if you really really mean that I can call you when I really do need something.
6) "Wow that really sucks" and then pause and listen. Maybe I needed someone to lament with. Maybe I just need to bitch about it... but honestly, it does suck and sometimes I need someone to recognize it.
7) "I admire your courage and strength to fight this disease." Damn right I am fighting... it is good to know that someone is listening
8) "You are on a very challenging road right now, and you are doing a great job." This one follows with #7.
9) "My prayers and encouragement are with you" it is good to know that people care and some higher power stuff couldn't hurt either.
10) Give me a hug, or a handshake, a pat on the back or a touch on the arm somehow (if you are not a touchy person). Tell me that you’re concerned for me, and you’re looking forward to me being a cancer survivor. That little touch makes me feel less like a non-human :)
THAT IS WHAT I REALLY NEED....
Now on to things that are not helpful:
1) "I know what that is like. I got really sick once from the antibiotics that my doctor gave me for a UTI." This nice little piece of comfort was handed to me by the nice lady in the accessories department at Macy's. I was in search for scarves that were not too long to put on my balding head that don't make me look like a gypsy. Please don't tell me you know what it is like when you had to take some pills once.
2) "I helped my good friend who had cancer. She died last month... she lost the battle." This one was from the lady at the accessories store I visited after leaving Macy's. Please don't tell me about your friend/grandmother/neighbor who died from cancer.If you want to tell me about someone who beat it, or even someone who is currently fighting, that is fine - good even, but I really don't want to hear about someone that died. You think that I don't think of it???
3) Do NOT tell me about your mother, sister, father, old Aunt Milly and their experiences with the horrors of Chemotherapy, how much they vomited, their terrible death, how badly burned they were through Radiation or other awful stories that will simply depress me and make me more nervous. Now... if YOU were the cancer patient, this is a completely different story. I want to hear from you, how bad, how good, how ugly or not... you are a survivor - I need your strength. You made it through it --- so can I.
3) "You look like [insert: an alien, avatar, Pinky or The Brain, Gollum]." This one is courtesy of the nice little lady who was also looking at hats at Macy's - this is only okay if this person is under the age of 9. Then I would have understood... but she was in her 20s. I gave her the benefit of the doubt that she thought I cut my hair like this on purpose... I told her it was because of chemo. She said "Ummm I know" rolled her eyes and walked off.
4) Don't ignore someone with cancer (or anyone who is dealing with something difficult) because you don't know what to say or when you do talk to them don't ignore the fact that it has/is happening. Say something authentic and from the heart (just not anything on this list!). The old joke about voting applies: do it early and often. Even just acknowledgement is nice. The first lady who was in the accessories department ran off rather quickly. I am going to blame it on that she really just got the sudden urge to poop or she was a snotty sales person...
5) Do not talk to me about the alternative medicine that you read about in Crazy Monthly, that is sure to cure me of the disease. Don’t tell me that the treatment isn’t good for me, and that lots of people end up dying from the treatments, or that chemotherapy is just a big conspiracy between the government and the pharmaceutical companies, etc., etc. Don’t tell me how I got it. Just stop. I don’t need to hear about it. Oh and I am still not quite sure what to do with my "Kill Cancer for $5.15 a day" book given to me by the secretary at the chiropractor's office...