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Telling people about my CLL

Eagle5327
Posts: 4
Joined: Oct 2009

Hi, there --

I'm a newbie, dx'd earlier this year with CLL. Stage 0, WBC 15 ALC 7000. Prognostic markers favorable. I feel fine but am nonetheless pretty traumatized. I'm getting used to the whole thing and I have much to be thankful for.

Meanwhile, I'm a pretty social guy and am now finding it hard to decide whether or not to tell colleagues and casual friends what's really going on when they say, "So, what's new?" I make up something stupid but meanwhile there's something important to me I'm not talking about. Drives me crazy. I've tried just telling people the truth a couple of times but have found I can't get past the "L-word" without an instant death sentence being pronounced on me.

Others with longer experience must have encountered this, along with just about anyone else who has cancer. Advice or resources I could turn to?

Thanks

Geoff

jhayslip
Posts: 12
Joined: Sep 2009

Geoff,

I've never walked in your shoes, but I have heard service provided through Leukemia Lymphoma Society. I think its called "First Connections". They have a group of volunteers who have agreed and been trained to talk by phone about their own experiences. I think they try to match you up by age and diagnosis.

If you wanted to do that, you could talk with someone who was in a similar position about what worked and what didn't work for them. The website to see if that would be helpful for your situation is www.lls.org

In the past, I've prefaced my comments by saying things like, "the name sounds worse than the condition" or "but its unlike most other leukemias that you've heard of". But like you're suggesting, even comments like that don't really do justice for what it is that you're trying to explain.

Best of luck and please let us know what ends up working the best for you.

John Hayslip
Facebook ID: John.Hayslip

tf168wife
Posts: 21
Joined: Mar 2009

Geoff,
I was diagnosed with CLL last November. I was to say the least devastated. Even though the doctors told me it was the 'good' cancer! My husband was away at school, scheduled to come home at Christmas. I decided to wait to tell him them, even though that might have been a crappy thing to do - on a holiday! I wanted to tell him first, so I waited........and told nobody. That was pretty difficult. After I told my husband, and our kids, I then told my immediate family and a few close friends at work. That is all I have told. I guess, like you, how do you work that into a conversation!?! And.......since I am also 'watch and wait', there is really nothing to tell yet. I know exactly how you feel though - it is now a VERY important part of your life. But you're right too, in that it is still hard for me to say the 'L' word, or the 'C' word. So, I don't discuss it. I guess that really doesn't help you much, does it!?! When you are ready, I'm sure you'll be able to start telling people.
I also have found a network of CLL friends through a website called 'cllforum.com'. It has been helpful for me to be able to discuss things, or ask questions to people who totally understand what I am going through.
Take care, and I wish you a long watch and wait!
vets.wife

Eagle5327
Posts: 4
Joined: Oct 2009

Thanks, vets wife and John (and double thanks, too, to the vet!)

These are helpful. I hadn't thought of LLS and will give them a try. It would be great to talk to an actual person. I've been on CLL forum but wouldn't say I've made any friends -- maybe I haven't engaged enough. Think I'll go back there. Maybe talk to you there, vets wife!

This really is difficult for me to keep my mouth shut. Yesterday I was having lunch at a restaurant with a friend, and by coincidence, the owner of the place was staging a benefit later in the afternoon to support his nephew who is undergoing chemo. The owner and all the waiters and waitresses would be shaving their heads and sending all proceeds to LLS. Our waiter came around to explain all this and as I gave him my donation, I said, "I have leukemia, too." BIG MISTAKE. He had no clue on what to do and the people at the table next to us were clearly riveted, and it was no place for me launch into the usual long explanation about how some kinds are not an automatic death sentence. The waiter just said, "Oh, I'm so sorry," and skedaddled as quick as he could. The lesson here to me, and maybe others, is watch your mouth in public places. It didn't bother me as much as it bothered them, but I feel bad for having made them feel bad.

This is a learning process in more ways than one, especially for us extroverts.

Oh, well. I'll call LLS and see if I can find someone to talk with. Thanks again, both of you, and best of fortune and luck to you both.

Geoff
Washington, DC

tamcll
Posts: 1
Joined: Nov 2009

Hey Geoff!

I know exactly how you feel!! I was diagnosed a year ago after a routine blood check at the doctor. My husband of just 3 weeks passed away about a month before my diagnosis. He was diagnosed with renal cell carcinoma in March of 2008. I would never suggest that the way that I've handled it would be the best for you. This is just my story. I tell most people not because I want sympathy but it's almost as if I can come to accept it if I admit it to others. Needless to say, for the last year I've been a basket case but I'm a private basket case. I keep up a good front for friends and family only because if I fall apart in front of them then they become concerned.If I openly talk about it and anything the doctors tell me then I truly believe it makes them more comfortable. It gives me strength if I can come to say those horrifying words---"I have cancer". I guess what I want to express most is that there are things that are so much worse which I'm reminded often when I see the pain others have to endure. Your pronosis is good and I fully believe that life is what you make it. Live life to the fullest. Enjoy the small things around and NEVER take anything or especially ANYONE for granted. You just never know and the worst thing that can happen in my opinion is that you live with regrets. Tell people you love them, laugh when you are with friends, enjoy things that before didn't seem that important!!!I wish you all the best as well as a LONG happy life! Live for now, tomorrow will take care of itself.

Tammy

Eagle5327
Posts: 4
Joined: Oct 2009

Thank you so much for your response. I can't even imagine what this must have been like for you. I just can't.

I take your support to heart, though. I'm doing better than I was. I've found a specialist who I trust. I don't have words to say how relieved I am. My family and friends are wonderfully supportive, which means the world to me. And I think I'm making progress. I'm no longer angry at the person who diagnosed me, so that's a good sign!

I finally realized that people can't support me if they don't know what I am going through. So, despite the risk, I just tell them. When friends I hadn't seen in awhile would say, "So, how's it going?", I tell them "not so hot," and then tell them the truth. I take care, though, to make sure they understand the super-importance of the word "chronic" and then tell them I feel fine and expect to be around for awhile.

You know how you said that you might be able to come to accept it if you admit it to others? I think truer words were never spoken. I'm hoping I might be able to accept it, too, if I admit it to others. So far, so good. I even got one person to donate some money to LLS when he asked if there is anything he could do to help.

Hang in there, Tammy. I'm so sorry about your husband. But I'm glad you're there and I wish you the best.

Geoff

zzk
Posts: 3
Joined: Nov 2009

Ya eagle same boat..
dont know who to tell and what to tell
plus am 33.. and just diagnosed with CLL stage one..
does anyone know anyone who has CLL and is under 40?

zzk
Posts: 3
Joined: Nov 2009

Geoff.. noted you in DC. so am I
lets talk

Eagle5327
Posts: 4
Joined: Oct 2009

Hiya, zzk --

Send me an email at ghgrubbs@msn.com I'd love to talk with you. I'm not exactly 30 anymore but still work out, ski, backpack, and do lots of stuff. I'm looking for people to talk with, too, about this stupid thing. Look forward to hearing from you.

Geoff

jongkind
Posts: 2
Joined: Dec 2009

I too am a newbie; but was diagnosed 10 years ago - my story is on "experiences" - If I remember correctly the responses of the people around me were mixed but I got the most help from talking to others with CLL and managed to accept my condition (this was not quick!). What it comes down too is that our lives have changed but not ended; the sooner we realize this, the sooner we stop being the cancer and start to live our lives again. I went into a deep depression (I have always been susceptible to depression) that included a breakup of my marriage and finally a move from MI to MA to be with my grandson. That was four hard years of change. I am now pretty much taking it day by day.

It is important to know that everyone's experience with CLL is different. At the time I found out, my doc said that If one has to have cancer, this is the best one.

I hope this helped.

Max

shelynn
Posts: 1
Joined: Jan 2010

I was diagnosed stage 4 CLL on Dec. 30, 2009. I am going to Mayo Clinic for a 2nd opinion on Jan 21st.
I haven't told anyone except my husband because I can't see worrying anyone else at this stage of the game. I am at watch & wait so there really isn't much to tell.
I have had to tell my dentist and oral surgeon. I could see from the look on their faces that they had me on my deathbed. It was not pleasant.
I am always so glad to hear from the long term survivors. It gives me such hope and I intend to fight like hell.

JohnNM
Posts: 2
Joined: Jan 2010

Hello Geoff, I was dx,d with CLL August 2009, in my 50's,RAI stage 0, WBC 10.3,after a very difficult neck surgery where the biopsy was taken leaving me with substantial nerve damage on the right side of my face,neck ear. The first month or 2 I really surprised myself with how well I rcvd the news and dealt with it. I did learn in the first few months, that telling people I had leuk. was easy, but dealing with their OMG reactions was the hardest thing for me. So now I really don't bring it up, unless I'm having a bad day due to joint pain, where I can barely walk. Then I will discuss if asked about it.
In dealing with my pain, I'm kind of like some others whom have posted, most days I deal with Nerve and joint pain, and it is frustrating to have heavy duty pain meds that have very little effect. I know what its like to cry.
None the less, I try to feel fortunate, in that I was dx,d with CLL and not ACL,or AML, plus my bloodwork is pretty good.

jdoug34
Posts: 4
Joined: Oct 2009

Hi Geoff
I was diagnosed with CML Christmas Eve 2008. The issue of telling people was massive for me at the time but after 12 months has become easier. My husband was with me when my doctor told me but we had to then tell our 2 adult sons, and my elderly parents. I decided that we had to tell people because it was impossible to keep it a secret due to travel requirements for treatment and tests to commence. I hold a high profile teaching position in a relatively small regional town and am also heavily involved in community band groups. I decided to send an email to all our friends and work colleagues with the facts laid out to give people time to digest the word 'leukaemia' and give me the opportunity to outline what would happen with treatment etc. The email was up front and direct. By the time I actually had conversations with people they were over the shock and were able to converse freely and ask questions. I was better able to cope as well without dissolving into tears. Some conversations were still awkward but in general I coped and they did too. I felt better after I sent out the email because I felt all these people who knew would be supporting me in whatever was ahead. I wanted to avoid misinformation about my condition especially amongst my students and their parents. I've had many friends and work colleagues thank me for the email and express their support. I am slowly coming to terms with living with CML and people now accept that I am functioning as usual within limits. I feel blessed to be alive each day and wish you all the best in your health and dealing with the emotional ups and downs.

Best Wishes
Jeanette

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