What to Say?
Dec 5th 2007PostmasterCommunication & Friends
Reading Lori Hope’s book ( see previous post) really highlighted for me how awkward it is when the subject of cancer comes up. It’s one thing to talk about other people, but when it’s you or the person you are talking to who has cancer, it’s a whole different ball game. When I was first diagnosed, I eventually told a lot of people and I was amazed at the variety of responses. Some friends who I thought would be very empathetic and supportive were very uncomfortable talking about it while some casual acquaintances were amazingly warm and, well…. energizing.
I don’t really know what I expected, but I learned first hand what an uncomfortable thing cancer was. It really is the elephant in the room. If you have cancer, it is always on your mind, but I think other people don’t even want to talk about it. Sure, friends and family want to know how you are and want to be supportive but, let’s face it, its not a happy topic. Sometimes we don’t want to talk about it at all, but sometimes we just want the people we care for to acknowledge our pain.
So what do you say to someone you know who has cancer? I’m sorry…..? You look good……? How are you feeling….? If you have cancer, what do you want to hear from your friends. Let’s hear your thoughts.
Posted by Doug
11 Comments »
nat on 06 Dec 2007 at 9:03 pm #
I just want to hear - “I’m sorry this happened to you.” Frankly, there is really nothing else to say.
Postmaster on 11 Dec 2007 at 8:30 am #
Nat. I really have to agree. That is the best sentiment and just that recognition that it sucks and that you care is enough. I don’t mind people’s curiosity - talking about it is okay. I don’t always like being regaled with the stories of everyone else they have heard about. Just because someone else had it and was “just fine” or whether they died, has no relevance to my personal situation. “I’m sorry this happened to you,” is enough.
Doug
Duane on 13 Dec 2007 at 1:36 pm #
Hey Doug,
I found your fantastic site via a link at the blog, “Miss Melanoma.” I haven’t had a chance yet to read it in depth, but I will. Thanks for sharing your experiences and helping to strengthen the young adult cancer blogosphere.
Best wishes always,
Duane
http://journalofaprizefighter.blogspot.com
Baldylocks on 13 Dec 2007 at 2:45 pm #
I feel strange when people are too uncomfortable to say “How are you?” My health consumes my life right now so to ignore that is pretty rude. I would also rather talk about life as normal and have a good time. Deathly seriousness is not necessary.
I’m not bothered too much but I do think it’s unnecessary for people to pipe in that they new someone with “that” but they died. Give me a break.
Miss Melanoma on 13 Dec 2007 at 11:59 pm #
Hey Dougie Fresh,
Thanks for commenting on my blog. It was interesting b/c I’ve been lurking here a bit and have even been inspired to check out Lori Hope’s book.
I find a lot of what you write about so true. I can’t tell you how shocked I was to see some of my friends’ reactions when I was diagnosed. People I’d known 15 years, and I’d never had expected it. It just hits us all so differently, especially younger adults, I think, who have had so little experience with those of us living with cancer.
Anyhow, off on my own little tangent there.
Thinking of you often,
MM
Fran on 29 Dec 2007 at 7:16 pm #
Dear Doug,
I just found your site today through another and I find I am amazed at the honesty being spoken here. One of the biggest topics I have on my mind right now is the loneliness, and fear of having Cancer and not having anyone to talk with. First, I would love to go out to a support group and be social, but other physical limitations keep me from being there, so I must rely on the internet.
I was diagnosed with Breast Cancer less than 2 years ago, and while I did not expect a parade of friends and family at my door, I was very disappointed that a couple of months after my diagnosis, people stopped coming to the house, then the phone stopped ringing, and I am a very lonely, frustrated person right now. I woud love to have ANYONE ask me how I am doing right now, but all of my friends AND family have deserted me, without fair warning.
I have always been a very social character, and now I find I am just wasting away in my home — and don’t really know how to end this horrifying feeling of loneliness. I do agree that staying in touch with SOMEONE, whether it be by internet or not, is imperative, so here I am.
Thanks for all of your honest comments — those I have read so far — and please keep it up. What I need now is interaction.
With sincere appreciation,
Fran
Ruth on 01 Jan 2008 at 10:18 pm #
Fran
There is no need to feel alone. There are people who will reach out to help you. I am a volunteer with the Canadian Cancer Society and I have spoken to many breast cancer survivors. There may be something available where you live. Phone support or perhaps someone who could visit.
As you know, diagnosis and treatment of cancer is just the first step in the cancer journey. Even if you’ve been given a clean bill of health, the trauma you have experienced is real and must also be “treated”. For me, it meant finding a way to deal with my new body image and to somehow cope with the fear of recurrence.
There is nothing to be ashamed of that you still need to talk about it. I found that people who never had cancer just wanted to close the door and couldn’t understand why survivors need to continue to talk about their feelings.
In Canada, 1% of ALL women are breast cancer survivors. This statistic probably transfers to other countries as well. There is no reason for you to feel alone.
Ruth
Fran on 03 Jan 2008 at 9:47 pm #
Dear Ruth,
Thank you so much for your kind words of encouragement and support that mean so much to me. I would have written sooner, but I lost my brother, age 59, to Lymphoma on New Year’s Eve and I am so heartbroken. My sister, who was with him when he died (they live in another state) never even called to tell me he was in the hospital for three days prior to his death, then delegated the phone call to tell me of his impending death to my uncle, just about an hour before he passed away. Now how cruel is that? She knew how close we were, Richard and I spoke on the phone often and exchanged e-mails, but I could not reach him to tell him I wished him a Merry Christmas and had been very worried something was wrong. Today, as I was checking messages on my cell phone, there was one from him that I had never received, and I just broke down and cried. This Cancer Business is really bad news, isn’t it? It takes those we love when we expect it the least, leaving us with a hole in our heart, and in my case, a lot of anger left behind for my sister.
This is a sister who has not called me since I was diagnosed with Breast Cancer, has never acknowledged my illness at all. Her last words to me were at the funeral of my younger brother, age 47, a little more than two years ago and she was so angry that I refused to sign over my portion of his life insurance to her. She tried to get me to sign them over just as they were placing him in the hearse to be buried, but thankfully my cousin stepped in to intervene. Her message to me was that she would make certain I was buried in a plastic bag in Potter’s Field. I can imagine you now know how controlling she can be !! These are the thoughts that have fueled my depression of late, also, but I had taken care of my funeral arrangements and life insurance policy a couple of years before that, so she has no power over me. I can thank God I was responsible enough to make certain my affairs were in order, and when I was diagnosed, my foresight meant even more to me. To think that she is the only person left in my immediate family is frightening, but those details are out of her hands.
I understand completely what you are talking about when you speak of the ‘trauma” we suffer, even after the crisis seems to be over. I have not been “treated” with a lot of care, and perhaps that is my fault, because I have avoided laying a burden on anyone. After my friends disappeared when I had so many complications after mastectomy, I was too angry and hurt to reach out to anyone, not knowing if they would even want to hear of my difficulties. I know this was a mistake, and a bigger mistake not to shout to the rooftops to anyone who would listen to me, but I did not know where to turn — and was embarrassed to call strangers to come and help. I am learning, after reaching out on the internet, there are many people who are willing to listen, and who care. Your comments really touched my heart and I could feel your compassion, and I thank you for taking the time to write. I had written to Doug, the first time I wrote, of the the honesty I felt on this site, and your response is proof of that. If I ever needed care, it was when I saw your note, and I want to thank you. The timing of it was exceptional, which I think you can understand now.
I am interested in who I might be able to call to come and perhaps visit with me or talk on the phone, because the loneliness and isolation are one of the hardest things I have had to bear, with the exception of the disfiguring aspects of my cancer. I find I am losing self-esteem each day that passes, and that encourages the fears to grow even faster. As I said earlier, I have always been very active and social, but now I am like a lost puppy, in desperate need of a hug. There are those who think that is a silly notion, but I suspect every one on this site has been right where I am, at one time or another.
Doug, I also want to thank you for having the foresight to start this blog, commmitted to the emotional issues surrounding this disease and how we are affected in every way. You are visionary, and this is the first site I have seen yet that is designated to our hearts and minds, and how deeply we feel our emotions after being hit with such a terrible and frightening illness. I am so happy I found you, and look forward to keeping in touch with everyone here and taking the chance to let someone know how I am REALLY feeling. I find it a cathartic exercise, one that is esssential if we are to have any quality of life.
To everyone who may be reading this, thank you for coming here, for listening, and for saying what is on your mind and in your heart. Already, I feel as if I am a part of something very special — very special, indeed!!
With gratitude, Fran
Ruth on 04 Jan 2008 at 10:16 am #
Hi Fran
You’re right - Doug has brought alive one of the “not talked about” aspects of cancer.
All through my diagnosis, treatment and beyond, I had the good fortune of being able to join support groups where other survivors talked about the good and the bad. You might be surprised to hear that I laughed alot during some of those meetings! Nothing like inside “floating prosthesis” jokes to help recuperation!
These support groups, and a visit from a volunteer while I was recuperating from my mastectomy, spurred me to volunteer with the Canadian Cancer Society. I have worked with them for over 6 years now and spoken to and visited many survivors.
I went to the American Cancer Society website and they have the same program I am involved in so it will be well worth you giving them a call. Here’s the link to the program: http://www.cancer.org/docroot/ESN/content/ESN_3_1x_Reach_to_Recovery_5.asp
They can match you up with a support person for ongoing discussion.
But, don’t give up posting here because by opening up, you help others.
Honey on 04 Jan 2008 at 11:02 pm #
I think the worse thing to say to a cancer patient is “you’ll be fine”… it gives the expectation that they have to be, and they have no control over that. The best thing to say is “It really sucks that you have to go through this…my thoughts are with you…and I hope everything works out.” I know people think they are being kind and positive to their cancer friend, but really they are minimizing what the person is going through.
Honey
Susan Carrier on 03 Feb 2008 at 1:26 pm #
I just discovered this blog, so I’m entering this conversation late. This is a great thread.
Honey, I also hated it when well meaning people said “You’ll be fine” or variations of that. I felt it really minimized the seriousness (stage 4 mantle cell lymphoma) of my disease and made me feel I was making a big deal out of a diagnosis.
I liked it when friends or acquaintances were genuinely interested, asked questions and then listened intently for the answers.