Too Many Questions

Hello, Received the news, I have CLL. My mind is going a hundred miles an hour. I barely remember anything the Doctor was saying ( except CANCER). I don't know what to do or who to talk to about this. I feel so overwhelmed. I am a mess. I don't understand what to expect? One says don't worry one says get another opinion and others say wait and see.

Wait for what DEATH? I have not a clue what to do or where to go.

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  • Welcome Fight2live

    At this very difficult time ,I cannot guess how you are feeling right now but can understand, CLL is a complicated disease and affects us all very differently the majority of us do start our journey on active monitoring because early treatment is not the recommended option for us. You are entitled to a second opinion.and can get a second referral through your GP. Learning and preparing yourself before your next consultation may be a big help..

    This is the latest CLL patient booklet produced in the UK. It was published in print a few weeks ago and gives information in a manner that may help with your understanding. It also links to many sources of support and information and helps you form questions to prepare yourself for your consultations.

    leukaemialymphomaresearch.o...

    You can contact the CLLSA via several routes if you wish to talk to some one. contact details are available on our website at:

    cllsupport.org.uk/contact.htm

    Please message me if you wish to talk.

    Nick

    .

  • Hi Fight2live

    I'm glad you've joined us here and thank you for sharing your feelings with us, at such a hard time. I certainly remember those overwhelming feelings, at diagnosis and I'm sure others will identify too.

    This is a safe place to share how you feel and don't hesitate to ask any questions.

    Hugs

    sparkler x

  • Good evening Fight2Live;

    Great handle you have there "Fight2Live", it speaks of a strong paradigm.

    You have already begun 'what to do', perhaps you need to stop, step back, and look, for just a moment, Fight2Live.

    I see Sparkler has already 'spoken' with you. You may want to read her other writings here.

    There are people at CLLSA with many experiences. Some will be similar to what you have experienced so far or may, but not exactly the same.

    I know Nick is a great source of information and knowledge.

    Take care.

  • Hope the initial shock has passed and you are managing to find the information that you need. Hopefully you will be a slow burner and be able to put the cll to the back of you mind some of the time

  • Thank you so much. You are right, I am much better today.

  • Fight2Live, this is a brutal time for you as I remember well from my diagnosis 6 months ago.

    You need to gather support and reliable information to build your strength and coping mechanisms.

    You're not waiting for death any more than the rest of the population are (and tomorrow isn't promised to anyone). You have a condition that is liveable with but which frightens you at the moment with its uncertainty and lack of boundaries. We all know that feeling so well.

    There are days I feel so fearful but then I remember that cheesy saying, 'don't let the fear of dying destroy the joy of living.' You don't need platitudes I know but somehow I've taken something from that to hold on to.

    I read Taliesin's excellent blog and it resonated with me loudly. This is my condition, it's my body and whatever is going on in it isn't a concern for many others at the moment. I don't think of CLL as something separate or alien from me (not sure if others do). It's a peculiarity of my physiological structure and I'll deal with it with the advice of the best doctors I can find and the support and shared understanding I receive from fellow 'sufferers'. And I'm not changing my life drastically either.

    Don't read out of date scientific papers or lifespan predictions. They're meaningless and made me feel desperate initially.

    Take support and strength from where you can (I clung to my husband like a limpet for the first few weeks).

    And feel free and uninhibited with expressing your hurt and fears here. Plus you'll find excellent advice.

    Love and support,

    Newdawn x

  • thank you for your info and a very uplifting message on living life. I am much better today than yesterday and will be expecting each new day to be easier with this life changing event in my life. I will take the advice and hope one day I will be the one to help someone.

  • Welcome Fight2live. You have joined the best community ever and we all understand how difficult the first few months are after diagnosis.

    Just be kind to yourself and take it one day at a time.

    There is so much wonderful support and knowledge here and on other Cll sites

    .We are all one big family

    Take Care

    Diane

  • Hi Fight2live

    It's good to hear that you are feeling a little less overwhelmed now.

    Diane is right when she says we are a family here. So please, if you have any questions or feel low at any time, just shout and someone will be here for you. None of us is bright all the time - we all still have our ups and downs!

    Warm wishes

    sparkler x

  • Same thing happened to me 11 years ago. My doctor said don't know much about CLL go and look it up on the internet.

    So you see the worst cases - 10 years to live etc. I was self employed so I gave myself early retirement at 60 years old.

    Well 11 years on my WBC count is the same as it was when first diagnosed, it goes up and down a bit but to be honest if I had not had that routine blood test in 2000 I would be bragging how fit I am.

    So it does not have to be devastating does it. Yes I know I am one of the lucky ones but so might you be.

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