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Life after cancer | Talking with others

 How do I tell my friends and family I've been diagnosed with cancer?

 Should I tell my children I have cancer?

 I can't imagine telling the people at work I have cancer. Did you tell your co-workers?

 My friend has been diagnosed with cancer. I am trying to be a support to her, but it's difficult. How can I help her? What should I or shouldn't I do, or say?

 

 How do I tell my friends and family I've been diagnosed with cancer?

 Jax, Massachusetts, USA: I told my diagnosis to the people closest to me in an absolute direct way. Because there were so many unknowns when I first received the diagnosis of cervical cancer stage 1B, I just told them what I knew and that I was scared witless. What was interesting were the reactions. Some friends empathized and told me to call whenever I needed to. It felt like others tried to minimize what was happening. They told me about the medical miracles in cancer care and how they were sure I'd be cured immediately. The best support came from women who themselves had been diagnosed with a gynecological cancer and were several years out from their experience. They neither minimized nor dramatized what I was going through. Instead, they shared their experience and invited me to talk about mine whenever I felt a need to. It was surprising how many women around me in 'every day life' had gone through something similar. It reinforced an old idea for me: that we never really know the tragedies unfolding in the lives around us until something similar happens to us. I think human beings are awfully brave when they live joyous lives in spite of all we suffer!

 Marjorie, Pennsylvania, USA: I believe that you don't personally have to tell everyone about your diagnosis. What I found helpful when I was diagnosed was to have one or two people relay the news to others. After I had told my immediate family and a few close friends and neighbors, I asked some of them to let others know. For example, I asked my mother to pass the news on to her sisters and brother and tell them that they could let my cousins know. A neighbor asked if there was anything she could do for me, so I asked her to let the other neighbors know what was going on with me.

It can be hard seeing the look on people's faces when you tell them the news and it can be hard on you having to tell the same story over and over again. So, ask for help from your husband, a good friend or a close neighbor, and slowly the news will get disbursed and it will save the energy that you can put toward getting well again.

 Michele T., Pennsylvania, USA: I had a lot of people to tell and I did it in different ways depending on who it was. I told my immediate family by phone, since we don't live close by, and asked them to tell other family members for me. I called my closest friends on the phone as well. Anyone I knew who had Internet access got an email from me. Also, I mailed a similar letter to friends who did not live close by or have email. Maybe it was cold, but it was the easiest way for me to tell so many people without getting totally burned out from repeating the story over and over. You have to preserve what energy you have to fight right now.

I explained what was going on and what I needed from everyone. I asked them if they knew a good lawyer (for a will), or a good cleaning person. I let them know that dropping off dinner once in a while would be greatly appreciated. This gave people something to do (it really helps people to connect to you when hearing such difficult news), and many people were grateful for the chance to feel useful. As my treatments continued, I kept everyone I knew informed with email updates, so that I did not have to repeat the facts to everyone by phone.

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 Should I tell my children I have cancer?

 Lola, Utah, USA: I had three children when I was diagnosed. They were seven, eleven, and fifteen. We approached their knowing about my cancer with openness, and tried to minimize any surprises (like them not knowing when I was scheduled for treatments etc.), but were honest with them, and let them talk when they wanted, or cry, or be afraid.

The first time through, I felt that things went pretty well for us. When I finished chemotherapy, they saw I was going to make it, in spite of the bald head (they all were sad for me that I had to lose all my hair). But I made the best of my situation, so they tried to also. My husband was a big help, and we had lots of family support.

The situation changed for the worse when I recurred, three months later. I saw that what was happening with my children was that the trust that they had relied upon, by staying optimistic and having some measure of "predictability", was shattered. The things we said, as their parents, were no longer "necessarily true". There were too many disappointments and changes from the original plans. The second and third recurrences caught us all by surprise, and the children, now eight, twelve, and sixteen, wondered if anything we were telling them was believable or trustworthy.

I can see that my children came through this with many strengths, and now that they are all old enough, they themselves are starting to recognize this also. I could say a lot on the subject about all three of my children - different ways they dealt with it, etc. But we did survive it, and we are all closer for it - all of us still here, together, driving each other nuts! (And I am glad for that.)

"The Wellness Community" offered support for kids whose parents have cancer, led by a group of their peers and overseen by a child psychologist. The young teenager who was in charge had lost his father to brain cancer. They supported conversations such as "why is there so much anger at the parent who is sick?", and how independent "acting out" is a way to withdraw from the dying parent, separating the emotional need for that parent before they "leave you" by dying.

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 Karen, Alberta, Canada: When I had my hysterectomy for cervical cancer, my daughters were one and four years old. We didn't tell the older one that it was cancer, but that mommy had to have an operation to remove part of her body that was "sick". We approached it very matter-of-factly, and she was fine with it - in fact, quite curious about the whole thing. She did have to be taught not to tell everybody that "mommy doesn't have a uterus anymore."

Then, four years later, when the kids were five and eight, I had brachytherapy radiation treatments for a vaginal recurrence. This time, we did tell them it was cancer, and what the radiation was for. Luckily, the prognosis was good, so we were able to assure them that I would be fine afterwards. When their grandmother died of lung cancer a couple of years later, they had a lot more questions about my cancer, and needed more reassurance. I have always answered their questions openly.

We live several hours' drive from a cancer centre; testing and treatment has always involved overnight trips to the city. My radiation treatments kept me away from home for almost a week, so it would have been hard to cover that up. I have had to take the kids with me sometimes for check-ups. I have always tried to take advantage of "teachable moments" as they arise.

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 Georgia P., Massachusetts, USA: You should be as honest as you can be with your children. If they are really young, you can find books which help children understand a parent's illness. Answer their questions honestly but if it appears that they really didn't grasp what you said, just let them be. They may need time to absorb this in their own way, and reading a book, playing a game, riding a bike - this might be their way of handling it. We found that our grandchildren were quite matter of fact: "Ok, you told me such and such; now can I go out to play?" It is not that they didn't care, or understand - they just don't tend to dwell on things the way adults do.

If the children are teens, then they are old enough to be part of what you are going through. Perhaps have them help you choose a wig, turban or hat and let them decorate the turban/hat. When my daughter was having chemotherapy resulting in hair loss, I took my granddaughter to a craft store and she got all sorts of meaningful embroidered fabric decals which I ironed on to felt. Then, she cut them all out and added pins to the backing. These were pinned onto a favorite denim bucket hat of her mom's, so it was covered with these butterflies, birds, and birdhouses!

Have the chemo nurses give children a tour of the facility, so they see exactly what chemo is and that it is not a threatening place. (The nurses are very sensitive to this.)

Include your kids in as much as you can, so that they feel like they are helping you. Your children, as well as your husband and parents, need to be as much a part of this process as possible, for their sakes as well as yours.

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 I can't imagine telling the people at work I have cancer. Did you tell your co-workers?

 Jax, Massachusetts, USA: I'm thankful I work in a small agency and that the people I work with are friends. I was able to tell my colleagues I was diagnosed with cervical cancer and would need a radical hysterectomy. And, I was able to take a six week medical leave with pay. I can imagine being in a larger, less personal work situation in which I might tell the Human Resources department I'd been diagnosed with "a cancer" and would need x, y and z. My heart truly goes out to single women who must work. I was in that situation myself for fifteen years. I owned a photography business and if I'd had to be out for several weeks, the roof would have fallen in. All I can say is that cancer leaves us no choice. It's not productive to worry ourselves sick on top of the cancer so we each do what we must. For me, the cancer was the first time I had to rely on other people. I wasn't used to asking for help, but I learned quickly that I had no other option. The diagnosis made real for me what had only been a hypothesis before: that we truly don't go through this world alone.

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 My friend has been diagnosed with cancer. I am trying to be a support to her, but it's difficult. How can I help her? What should I or shouldn't I do, or say?

 Marion, New Jersey, USA: How can you support your friend?...

1. Remember her with occasional "thinking of you" cards. Sentimental ones. Humorous ones. Zany ones.

2. Ask her to give you a list of things that you can do for her, such as taking the dog to be groomed, taking clothes to the drycleaners and picking them up, chauffeuring the kids to the dentist, etc., doing some laundry or other household chore, picking up a prescription, going with her to a movie or a concert if she is up to it, making a meal, doing some grocery shopping, visiting (on a limited basis, unless she indicates otherwise). There are all sorts of these little mundane, everyday chores that can seem overwhelming to a cancer survivor in treatment. She probably won't ask you. She doesn't want to feel like a "burden." She doesn't want to "put you out." But, if you have a list, it facilitates the process without being intrusive. If you say you are going to do something, DO IT! A friend asked me what she could do for me and I suggested she bring a bowl of soup or a casserole, something that she could make ahead of time, probably as part of her family's meal, and then a portion sent to me. She readily agreed and I am still waiting (that was a year ago!).

3. Take her to her doctor appointments or to her radiation treatments. The hassle of getting to these can seem overwhelming to her.

4. Unless she is a bosom buddy and will level with you about what she finds too tiring, etc., make your phone calls short (yes, it is very tiring to the cancer patient to have long conversations) and remember that you are not the only one calling her. She may get 15 or 20 calls a day or a week and it can be overwhelming. For a long period of time, I had my husband intercept all calls and if I wished, or was able to, I took the calls. Otherwise, he handled it.

5. The same thing applies with visiting. Too long a visit will wear her out. And again, remember that you are not the only one visiting.

6. Accompany her to a chemo treatment. Take along your own reading material, knitting, etc., accepting the fact that she won't want or won't be able to carry on lengthy conversations. But, she will be grateful for your company. And it will help you to understand what she is going through in a way that words could never describe.

7. Laugh with her! Tell her good jokes! We still enjoy a good hearty laugh and, after all, isn't laughter nature's medicine?

8. Never say to her "You should....." or "You shouldn't...."

9. Don't inundate her with the latest scoop about cancer from the Internet or some magazine or book you have read. (Again, you have to know your friend really well to know what type of "help" of this type she might appreciate.)

10. When she tells you something relating to cancer, never say "I know just how you feel." You don't.

11. Don't say "Oh, I'm sure you're going to be just fine." You don't know that, she doesn't know that, the doctors don't know that.

12. Again, depending upon the level and basis of your friendship, she might appreciate a gentle massage of the arms and legs or feet with some lovely aromatic massage oil. It is bliss and helps the patient to relax. My muscles and joints were particularly affected by the chemo and my trip to my massage every three weeks was something to really look forward to.

13. Don't tell her about all the other people you know who had/have cancer and the status of their disease, such as in "Oh, poor Marie, she battled breast cancer for five years and she finally went to be with the Lord. What a blessing."

14. Some people can ask me how I am and their concern seems genuine and compassionate. Others ask with what seems to be an insinuation that they really want me to tell them something down and dirty about my cancer. It's sort of like that hunger for juicy gossip that some people have.

15. Does she go to a support group? Most support groups welcome members of the family or friends to accompany the cancer survivor. In one of my groups, a friend of one patient has come with her to every meeting. She has been so supportive and has also learned so much.

16. Don't forget her spouse, significant other or other caregiver. Send him/her a "thinking of you," a "here's a hug" or, again, some crazy, zany card. It will be so much appreciated. The caregiver is experiencing tremendous anxiety also, as well as fear, loneliness, a sense of helplessness, most likely interrupted sleep, etc.

17. Give her a gift. "Chicken Soup for the Surviving Soul" is such a marvelous, uplifting book. Be sure to point out Norman Cousins' short story about the "We Nurse." If she has a CD player, a CD with soothing music can be so helpful. My friend gave me The Secret Garden and I played it over and over and it brought such a sense of peace and calm. If she is an avid photographer and never gets around to mounting the photos, a photo album makes a good gift.

18. Try to act as "normal" as possible. Although her attention is naturally focussed on her cancer, especially at the beginning, she will appreciate it if you can have the same sort of conversations and activities, to the extent possible, that you had before cancer.

19. Ask her if she would like you to pray for her, or together with her. I have a friend who is an atheist, but she lights candles for me. Some people want nothing to do with prayer, so this would depend on how well you know your friend. It can be very comforting.

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 Jax, Massachusetts, USA: The best response I got was from a dear friend who said, "Oh my god, that's terrible! What can I do?" My reply was to 'just listen' and she did.

The worst response I got was from another friend who said, "Oh, don't worry. I have a friend who had cervical cancer twenty years ago and she's doing just fine."

This is likely to be the number one bonafide scariest time of your friend's life. It doesn't matter how many public service messages tell us that "cancer is no longer a death sentence", when we hear the diagnosis each and every one us thinks about updating our will. Besides offering to do whatever needs to be done - babysitting the kids for an afternoon, bringing over a hot meal, going to the doctors with her - ask yourself if you have the strength to walk a dark, scary road with your friend. She is likely to talk about her own mortality and that means your mortality may be highlighted in ways you've never confronted. If you're not ready or able to do this for her, tell her. It's the things we leave unsaid and the promises we make that we can't keep that cause the greatest damage. But if you are able, then learn how to walk beside her in silence when she needs it, in laughter when she's ready. True friendship is the greatest balm to illness. You possess a gift beyond price!

 Sue D., Pennsylvania, USA: Strangely, I got the most comfort from my friends who didn't try to comfort me! My inner response to friends who said, "I know it's going to by OK," was "No, you don't. It's already not OK and nothing will ever change that."

Similarly, I got no comfort from my doctors who tried to calm my fears by quoting five year survival statistics and telling me "If you have to have cancer, endometrial cancer is one of the best cancers to get." Spoken just like someone who's never had cancer! My inner response to that was, "Then what is the best kind to get if you *don't* have to have cancer?!" Being told my stage and cancer had a 95% five-year survival rate did nothing to comfort me and I don't know any other survivor who has been comforted by statistics. After all, we already "beat the odds" to get cancer, who's to say we won't "beat the odds" again to make it into that unlucky 5%?

What did comfort me were my friends who acted on their instincts and just said, "That sucks--how terrible!" when I told them I had cancer. They reflected back to me exactly how I was feeling and didn't try to "fix" me. That really meant a lot and they were the biggest help all the way through. They were just "there" for me. I remember keeping one friend on the phone line while I just sobbed -- and she understood and just let me cry.

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