What a great post and ensuing discussion! I had to tell people twice that I had breast cancer: first in 1996 when I was 43 and mother of boys ranging from 3 to 10, and again in 2003 when the boys were that much older. Each time I had to consider who to tell first and who could be told later. I agree that mass e-mail has its purpose. That's how I communicated my diagnosis to cousins and second-tier friends. My husband helped me by informing his whole side of the family of my diagnosis.
How we choose to communicate is very personal, and depends on our personality, family and friend relationships, work comraderie, and mood.
And that guy who told P.J. those chemo horror stories needs to have his head examined. Can't wait till P.J.'s next post on what people should say to cancer survivors. It's one of my favorite speaking topics.
Blessings,
Jan
www.janhasak.com
I am sorry if anyone thought I was uncaring but I still am very very concerned about how the majority of people are so terrified of even the word cancer, as I feel this may have a major impact on long term survival because many people fear cancer so much they will not go and see about anything suspicious at the first sign of that suspicious lump or discharge etc ... which can then have the serious consequences they fear!! I have found on my journey that the more knowledge I gained from speaking to and reading about the journey of fellow patients even if it was scary at times actually helped me cope better with my journey.. then again everyone is different and once again I am sorry if my approach, though well meaning, may have frightened some people,now or in the past, even though I found that same pproach to me helped me a great deal...I hope I do not have to repeat that journey and all who have done or are, you are in my thoughts and Prayers for strength and courage and a happy ending for you all!!
Dear PJH Thanks for that comment as sometimes in my enthusiasm to ensure people do not fear cancer as much as so many people seem to fear, I may hurt without meaning to hurt feelings. My friends do know that I care and am also willing to help as much as possible in anyway! If one person is less fearful of cancer because of what I have posted I feel that is reward enough. My family has had many members on the cancer journey even in one year and for multiple generations with thankfully the majority surviving for a very long time after their treatment is finished and only a few losing the battle in the short term. I feel this is helped because of our family history we are all very aware and get help quickly for anything unusual, Pray for guidance for our Doctors and do what the Doctor orders,and also immediately share our journey with family and friends who Pray for us and give us a great deal of physical and emmotional support which makes the journey less difficult to bear!! Once again may The Lord Bless all who are on this challenging journey with good health once again!! God Bless, Pacific
From the personal long term experience of myself and my family that knowledge is the most important thing that has helped save so many of our lives, sadly not everyone has the same access or knows the right questions to ask when confronted with something out of the ordinary in their bodies which also is sadly conpounded by the fear of the unknown and the "C" word. Hopefully with the help of you, PJH, and those who take part in these discussions, all of us will gain more knowledge, as we all can still learn something new, even those who have quite an amount of knowledge already! Thankyou for making available a place for that to be possible! :)))
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Thanks, PJ, for such great suggestions. Because I had moved a thousand miles from family and friends a few months before my diagnosis, I had to notify almost everyone by phone. It was an excruciatingly emotional experience. I found that I needed to pace myself. Once I told my parents and sisters, I made just one or two calls a day until I'd covered the major friendship circles in my life. I let one or two folks in each of those groups spread the news within the group.
For people living within the household or who are otherwise entwined in your life, speed is important because they probably already sense that something is wrong. Of course, our teenage son knew I had a biopsy for breast cancer, but we hadn't told him that I was being tested for an especially aggressive type. My diagnosis story is complicated by the fact that the initial pathology report was negative. When the phone call came that the final report showed cancer, my husband was in the room. Before we could even begin to gather our thoughts, our son came in and knew something was wrong. When I told him my biopsy report showed I had breast cancer, he said, "Is it the bad kind?" He was picking up more than we realized. I would have liked the time to think it through as you suggest, but that doesn't always work out for immediate family members. Bad news vibrates through the air, and kids sense you are trying to hide something.
True, Phyllis - good point, that sometimes you simply can't prepare, if your immediate family has known that you've been going for tests, etc. I was lucky in that I was told in the doctor's office (not over the phone), so had time to work through things on the way home, before seeing my son. If you get the news with witnesses in the room - then all bets are off, eh? That's a tough one...
I appreciate this article because it does deal with a problem that just doesn't happen once and then is over - it recurs throughout our cancer treatment. Who needs to know what about the initial diagnosis, and then what rights/responsibilities do we have to update them on our treatment/prognosis?
My solution was to tell my husband and a few very close friends immediately, and to notify everyone else in a mass e-mail. This gave both them and me time to process the news and think about our reactions. I grieved as much for them as for myself, knowing getting the news would be painful and frightening for them. Some of them had had breast cancer themselves, and how could they not think about their own situation when hearing about mine? Some were female relatives, and there had never been any breast cancer in the family. Here I'd gone and broken the reassurance my mother had always given that "we don't get breast cancer in this family." A lot of different emotions would come up for them just like they were coming up for me.
This is actually a time, I think, when it's better to be the kind of person who holds back a bit and isn't as much of a "what you see is what you get" person as I am. For example, the person who contacts you out of the blue after 30 years who found you on Facebook doesn't need and doesn't have any right to know that you've had a cancer diagnosis. You have nothing to gain, and probably a lot to lose, by talking to them about it. It's unlikely they'll have anything to offer, and all you're going to do is be asked questions that may not have an answer and that you don't feel like contemplating anyway.
And for me, the bottom line is I don't want to be constantly dragged from trying to focus on having a normal and balanced mental/emotional life back into living in the "land of cancer diagnosis". I won't be thinking about it at all, and I'll open my e-mail, and there, staring me in the face, is an e-mail from a fairly distant friend wanting ANSWERS. Most likely, their intentions are well-meaning, but they aren't what YOU NEED at the time. They are in their own bind, too, feeling like they HAVE to ask lest you think they don't care, and that questions = caring. Oftentimes for me, NOT ASKING = caring, and is the kindest thing they can do for me.
Calico
Thanks for your input here, Calico - interesting viewpoint, and obviously well thought-out. You've added a great deal to the discussion here, and I appreciate it. Be well - PJH
Thanks, PJ, I've had to, unfortunately, think about this a lot here lately. I've had a breast cancer recurrence confirmed a few months ago and am now Stage IV.
Calico
Sorry to hear of the recurrence for calico, as I had a fright which thankfully was not cancer a few weeks ago, this has given me a great deal more understanding of how patients in this situation have felt when I was receiving my treatment the last 15 mths with no major setbacks. This has also given me understanding why some people really "freak out" when I tell them I have been receiving treatment for breast cancer for such a long time , I was very "out there" with everyone as I was amazed at the incredible fear in the general community of even the word cancer let alone meeting a patient undergoing fairly long term intensive treatment for a cancer that went from cat 2 to cat 3 in 2wks... The reason I went public was I wished to help at least one person be less terrified so that they would get anything of concern seen to asap, this has saved the life of the majority of my family even though we have mutliple caes of most of the different cancers in our family.. our motto is get it early and live... At the time of my diagnosis 4 other cousins were also diagnosed with a variety of cancers myself with breast cancer and another cousin with leukemia had to have intensive treatment but we are now on track for cure, one had an untreatable brain cancer but lived long enough to give courage to others facing a similiar challenge, and 2 were free with no treatment after the removal of a cancereous kidney!! In some ways I may have offended some people and sometimes the attitude of terrified people having me in the grave before I was even in there made it a challenge to keep positive when I was suffering from the bad side effects of the agressive treatment needed to ensure I had a long term positive diagnosis!! The scare I had recently helped me better understand their fear though at the same time I still was "out there" with that as well. Thankfully with the Prayers of myself and others it was not anything nasty!! During this time a number of friends my age have died in accidents, which confirms what I have always said, you should always live life to the fullest until you wake up dead, as no one really knows when they will die, healthy people die in accidents, and cancer patients can have a long fulfilling life after their treatment!! A strong Christian belief and the support of many family and friends has eased my not always easy journey because I had to relocate for multiple weeks at times for treatment and have also driven myself 17,000kms in 7mths (644kms plus round trip every 3 and 4 wks) to receive treatment when I was able to stay at home!! I wish everone who is on this journey Gods Blessings so that after the cloud of diagnosis and treatment you have the brightest rainbow in your life of a return to good health and happiness!!
Sunbeam and Calico, thank you for such thoughtful comments that take into consideration the needs of the person with the cancer diagnosis and the people getting the news. People's perceptions of cancer really do color their ability to respond to us in helpful ways.
Oh, Calico.... I'm so sorry for your troubles. I hope you're getting your treatment at a good cancer center, and that they find the combination of therapies that'll help. Sending you positive energy, and my very best wishes - PJ
Thanks, PJ, when I got the breast cancer diagnosis originally in 2006, I felt like I'd flunked a final exam for a class that I didn't even know I was taking. I know that's a weird way to say it, but that was my gut reaction.
This "alert" started in January and really didn't get settled into total reality until I had a biopsy a few months ago. The terror was huge. Then I moved from terror to just deep sadness and disappointment. I can feel myself transitioning out of that, but not sure where I'll end up. I do know that this will never really be behind me now. Living at all means living with it. What a challenge.
Calico