Telling people about my CLL

Telling people
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

Hey Geoff!
I know exactly
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

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

jongkind said:

CLL
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

Another Newby
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.

Telling People
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