Re: - Talking to Children - Telling people

January 9, 2008

- I'll second Pat's comments - you have YEARS ahead of you - you may not even need maintenance or anything for a long while......

On the matter of "telling people", and there have been a few postings on that, I personally found no advantage to being secretive about it - I would stop short of running around and blabbing or bragging, or bringing it up in every conversation, but there is no shame in having chronic leukemia!!!

Re: Re: - Talking to Children

Given that you are not dealing with treatment and side effects I would begin by putting your own support system in place first. When I was diagnosed I couldn't talk to people about my cancer with the exception of people I met in the treatment center, as we had a common bond. Do find someplace where you can talk to people, if not in person, then here on line. Hopefully you will be one of those who stay in a watch and wait mode. My former principal's mother did until she passed away at 93.

If you find that "dealing" is affecting the way you cope at home (less patience and the like) or you have more doctors' appointments than usual and the children are aware of it, I would keep the explanation very simple, but positive. Something like "I wasn't feeling well, so I talked to the doctor and he's checking to make sure I stay healthy just like your doctor does when you go for checkups or don't feel well. He told me to rest more, to have labs done so he's sure I'm OK" - something that explains in simple terms why there is a change and that it's under control. I think the most important thing is to not lie about what they can see or tell them everything is fine when it's obvious to them that it isn't. That leaves them open to imagining the very worst.

Remember that stage 0 is Good!!! and that you may just need maintenance, as a friend with cancer told me, like your car. Stay in touch. Pat

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January 9, 2008

, Marcus et. al. - The American Cancer Society (www.cancer.org) has a series of booklets available on line on the subject of talking to children. Go to the search bar on the top right hand corner and type in "Helping Children When a Family Member Has Cancer". I'm sure they have some good suggestions which would be helpful in various situations. Pat**************Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

January 10, 2008

Hello all,

When I was first diagnosed with SLL in 2005, I told everyone I came in contact with. And the more I got "Oh, you poor thing", the better and stronger I felt. I was NOT going to let it get me down!

I realize this won't work for everyone, but thought I'd pass it along.

W.

January 11, 2008

Dear ,

Thanks for posting this, you are quite right how we are all different, I also told everybody when I was diagnosed back in 2002, and the local News paper got hold of me and asked me if I would agreed to have an interview, which I agreed after some conditions.

I did have like you different responses from people "Oh, you poor thing", "you are a strong person you can cope with everything" etc. some of them were so shocked and unable to cope with the news that I had to give them support saying it was fine I was feeling well and sooner of later we all get something etc. etc. as time went by I found less work not to say anything than having to cope with people unable to face I had CLL. The only thing I have continued to point out to everybody is that if any one has a cold I do not want to be near.

Nowadays I find when I meet new people and they wonder why I am not working and being retired (obviously they do not see my age), I just tell them I got a chronic condition and like to have the freedom to do as I like with the rest of my life, people never ask which sort of condition I have, I have been amazed by how many people just freak at the word cancer or leukaemia, so one has to be very careful dealing with people.

A couple of years ago, I did a course about Listening, it was for those professionals dealing with cancer patients, two of us patients were able to get into the course, which I found very valuable, one thing that was very interesting was how all the other people on the course seemed so pleased that there were 2 patients on the course as they were able to ask things and get a reply from the patient point of view, they all admitted how difficult they found to talk to someone that had cancer, the course was a workshop with rollplay and teaching techniques of how to listen.

Last December I went to a friend for drinks, it was warm in the house so I took my jacket off, I had not noticed I still had the plaster on my arm from the blood test that morning, a lady spotted it and asked me if I hurt myself, I said no it is nothing I had a blood test this morning, I get them done very often, she just did not know where to hide, she was so embarrassed and concerned, my friend the house host, simply said, do not worry Chonette is quite happy talking about it, then she relaxed and we continued our conversation.

regards

Chonette

January 11, 2008

Hello Chonette,

I agree that many people do not know where to look when the term "cancer" or "lymphoma" comes up. It's almost as though they expect you to curl up your toes right there and then! It's most unfortunate people are so afraid of talking about death and dying; after all it's not an experience anyone is going to miss out on.

I think we are in a very good position to help and to educate - by talking openly and gently with those who appear to be open to the conversation.

W.

January 11, 2008

Hello All'

I've found, dealing with both CLL and breast cancer (doing well with

both right now) that reactions are as varied as people are. A couple

of my closest friends (one a doctor) and most of my family never talk

about it, which is hard, but I've come to accept that it's their

problem and not about me. I think it makes them feel vulnerable

somehow. I confronted one friend and he said he just didn't have any

idea what to say, felt helpless and didn't want to say something to

make me feel worse. Others, friends and strangers, give me the you're

so strong and brave routine. I read a very good article related to

that stating that we are not all Superman or Lance Armstrong and to

not let others put that on us.Most of the people I can really talk to

about what's going on, my frustrations, at times fears, and steps

forward or back are people who have dealt with cancer directly or

helped someone close to them go through it.I don't tend to bring up

the subject, except, as someone else mentioned, when I'm around

someone who's sick and I need a gracious way to move away, but don't

back away from it when it comes up. I do use my experience to try to

encourage others to get tested for all the routine things that can

lead to early cancer diagnosis. In addition, I find myself spending a

lot of time telling people how to deal with/fight " the system " . I'm

saddened by the fact that so many people go along blindly, not asking

questions, when they sense something is wrong but get no response from

medical professionals. Onward and upward! Pat

>

> Hello Chonette,

>

> I agree that many people do not know where to look when the term

" cancer " or " lymphoma " comes up. It's almost as though they expect

you to curl up your toes right there and then! It's most unfortunate

people are so afraid of talking about death and dying; after all it's

not an experience anyone is going to miss out on.

> I think we are in a very good position to help and to educate - by

talking openly and gently with those who appear to be open to the

conversation.

>

> W.

>

January 12, 2008

Good points, Pat, , and .Here are some random thoughts about my (insert disclaimer text here) experience. * It's difficult to know what to say, how to say it and with whom so probably the best bet is to just tell those who need to know or who express interest. Like Pat said, don't shy away from the subject. I bypassed the rumor mill at work by letting my diagnosis be known to certain individuals and the grapevine took care of the rest. Since I didn't soon keel over at work, everything was back to normal in a month. When people ask, I tell them without going into a lot of detail. The only people who get regular updates are the wife, the boss (due to the

occasional travel restrictions and treatment schedule) and the extended family

(but only when they ask). * How you talk about it affects how the news will be received. By and

large, the more optimistically you speak about the diagnosis,

treatments, or your current status the less awkward it is for the

audience. I took a couple weeks to digest the diagnosis and do the

research. When I did tell my wife, it was a lot easier because the

information I had was reassuring and that helped us answer questions more

positively when we broke the news to our son (14 years old at the time)

and then to extended families. After that, we dealt with friends and

work.* Some people with cancer don't want to discuss it and some people around people with cancer don't want to talk about it. Why force it? Actually, I'm not sure where a person might think sincere concern ends and nosiness begins in conversations about their health. People like Pat's friend often really want to say something but aren't willing to chance upsetting someone.* Be prepared for people to inadvertently say some really insensitive things when they find out about the illness but don't hold it against them. I had a real doozy once that I won't repeat. However, I will say that I'm not a big fan of the "Oh you're looking good." comment because its meaning is highly dependent on tone and punctuation. :-)* People reach compassion fatigue at varying rates. Some ask questions in polite chit-chat while others may be truly seeking the latest news. People's eyes tell you what

they're expecting. That's how I learned not to tell stories about bone marrow aspirations anymore.* A lot of other people have chronic diseases too. I have coworkers with serious health issues such as MS, diabetes, other cancers, AIDS, etc. They came around to sympathize and, presto, instant and casual support group. Knowing that other people are dealing with their own problems helps me keep perspective. Mine are certainly no more important.For me, the past few years have been much easier because I have a great wife who's a big help. She watches my meds and diet and doesn't put up with any nonsense. If I complain of a stomachache, she can discourse in detail about menstrual cramps, if nauseous, she can discuss pregnancy, if some other discomfort is mentioned she can recommend I try childbirth. Can't get that feedback at the doctor's office.Lon Re: - Talking to Children - Telling people