How can others best support you given they might not fully understand your current situation?
Our Cancer Experience Registry members said:
The most helpful were a few of my friends and family that called me often just to check in and lend support. And the people that actually took it upon themselves to actually do something as opposed to saying something like "Let me know what I can do." I was also surprised that a few of the people I thought were close to me basically just abandoned me--I guess they couldn't take it. Very disappointing.
The support I need is just a willing listener. I don't want to hear about "your friend" who survived many years, or how your aches and pains are similar to mine, or about staying positive. I just want to vent sometimes or even feel sorry for myself. If I can find someone who truly listens, without giving advice, I feel "heard" and can move on.
The people in our lives will never fully understand our current situation, and we can't expect them to. The best thing for me was for people to follow my lead. If I felt like talking about my cancer, I did, but sometimes I didn't feel like talking about it or even thinking about it. It was very difficult for me on those occasions when people kept asking me questions about the cancer, my treatments, etc., etc. Their hearts were in the right place, but I didn't want to be Carol with cancer; I just wanted to be Carol. I didn't want to talk about cancer all the time. If I did bring it up, I really welcomed questions like, "Is there anything I can do?," instead of "How are you doing?" Many times there were things that people could help me with, but if they didn't offer, I didn't ask. So, in a nutshell, follow my lead in the conversation, and ask if they can do anything to help out.
My cancer resulted in a single breast mastectomy with reconstruction, and was completed in 2010. Because it was Stage 0 and no lymph nodes were involved, neither chemo nor radiation were required, and I've been on tamoxifen for almost 4 years, without any recurrence of the cancer. The best advice I can give to anyone dealing with someone who has had cancer, but is in remission, is to say, "Congratulations for being a survivor." Most people are afraid for themselves, when they hear the word cancer. Survivors are past that stage. I find that most people, who haven't had a cancer diagnosis, are more fearful than people who have had cancer or are currently being treated for cancer.
Although I haven't had surgery to remove anything from my body, my hair did not fall out, I am overweight, have rosy cheeks, and don't receive chemo through the vein, I suffer with constant fatigue, breathing problems, and much pain. I need for my so called friends to understand that even though the outside appears "normal", the inside of my body is a cluster. I don't choose not to engage with my pre CML social activities. I don't have a choice. My body dictates to me when and what I can do.
I was in treatment for breast cancer for the second time last year (2012). I had a mastectomy Feb. 1, followed by chemotherapy and reconstructive surgeries. I really appreciated friends who picked me up and took me to lunch, or dropped in for a short (half hour) visit and talked about normal things like what they were doing, their kids, grandkids, pets, etc. I wasn't in the mood to rehash how I felt. Their visits took my mind off my ailments for a short time and I appreciated it!
Please excuse my forgetfulness, my words that may come out wrong. Please don't take it to heart. Please always know I appreciate and love you always. That has not changed. I can't help it if that chemo changed my thought process. Please be kind and patient with me. I'm getting better at being my old self every day, even though it has been 4yrs. I am alive, and cancer free.
I always appreciate someone who doesn't always ask about how I'm doing, but who asks more about what I'm doing --- I always try to keep my non-cancer life in the forefront and I'd much rather talk about that!
I have been in remission for 1.3 years post-treatment. Most people think I should go off their prayer-lists, that I am "cured". I very much appreciate those who have agreed to continue to pray that my remission will be long-lasting, and that I will continue to rebuild health and strength after treatment.
They can help just by being a good friend, and be willing to listen when I need to voice my worries about the possibility that the cancer could show up in a different location.....which is always in the back of my mind...
Listen. Just listen. Even if I want to talk about something non-cancer related for a change. Listening is the most supportive and helpful thing anyone can do right now. Don't judge. Don't say things like, "Stay positive!" or "It will all be ok!" Say, "Wow, yeah, that really does suck. I'm sorry that this is happening to you." It also helps if you laugh with me at my awkward cancer humor. And stop telling me that I'm "so young" to be going through this. I KNOW! Being bald, some strangers come up to me to say they've gone through this. Or know someone who has. It's incredibly heartwarming to hear them tell me I'll get through and to hang in there even though it's hard. It gives me strength.
Respect the boundaries I set, such as don't ask me about my health at work. I will give a report when I am ready. Ask if you can bring a meal, watch my children for an evening or afternoon, do my laundry, or clean my house. Don't just tell me to let you know how you can help, as I won't ask for help until I am almost down and out.
For me, the best support would be educating themselves about what I am going through, asking me questions about how I feel...not just physically but also emotionally and mentally. Of course having a freezer full of premade dinners, someone to come in and do laundry...is immensely physically helpful. No pink flowers, pink plants, pink pajamas, pink blankets!!! I appreciate that pink is the theme color for breast cancer awareness.....but I often felt sick to my stomach when I saw another pink present. As I have moved forward, those items have been put in storage as they invoke memories of not too pleasant times.
I appreciate healthy visitors. Please leave germs at home. Let's save the children's visits for a later date. If you "Just don't feel good" please stay home. If you’ve said, "I don't think I'm contagious" or "It's just a little sore throat", please stay home.
Not to assume that just because you look 'good' and don't look 'sick' on some days does not mean they can assume that you are 'healed'. We that are stage 4 and have NO CURE, live with the daily reminder that there is no cure, only day to day treatment and the HOPE of survival for as long as the Good LORD allows us to be here. So, trying to lift us 'up' by assuming that we are all cured, is not a good thing to us. I would rather hear nothing and just be given a hug and smile than verbal rubbish only to make the other person feel good about whatever they are feeling at the moment. After all--what is a stage 4 patient's 'comeback' (WORDS) to these people's comments like that???
The best way those around you to support you is to be themselves and ask you to explain to the best of your ability whatever questions they may have about what is going on with you. Nothing is more annoying than people going to a website and assuming that you must be going through all kinds of side effects and conditions that you are not experiencing. Welcome their questions and let them know that each cancer patient experiences different things. It’s not cookie cutter at all.
Don't dismiss/diminish my experience by saying, "But you're in remission, right?" I have CML. I am 3.5 years out from my diagnosis. It's hard to explain that leukemia "remission" is not really remission. I am in major molecular response. I, like everyone else who has/has had cancer, am terrified of it coming back. I live, laugh, and love, but I also worry and sometimes even still cry. Just allow me my ups and downs and be there for me.
By living and enjoying life with us. I often think people are just waiting for me to show a decline - that saddens me since I feel great right now and plan to stay that way for a long time!!!!
By NOT pretending that "they understand"! By being the same friend, or family member, they have always been. I may not be alone in being suspicious of people who try to "live through" MY cancer. They need to realize that, when we see friends acting out because WE have cancer, we become suspicious - do they really care about the patient's situations? Are they going through some difficulties, and thus distracting themselves by appearing to care about us? They must also learn, if necessary, to treat us like NORMAL people. We ARE normal people, who are currently working very hard to stay here, and to know that our surroundings have not changed, and that support is a reality! Kindness and compassion are major assets of a true friend.