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CLL, SLL, HCL

For people affected by CLL (chronic lymphocytic leukaemia), SLL (small lymphocytic lymphoma), or HCL (hairy cell leukaemia) to get together, ask questions, share experiences and support each other.

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No. of entries: 12 | No.of favourites: 0 | Posted on 26 Nov 2012 12:44
  • Hi jackie Welcome to the community Take car x

    may everyone stay well, happy and free from suffering

  • Hi Jackie and welcome,

    Glad you found us here. I'm sure you will feel comfortable here.

    Best wishes,

    Mikey

  • Welcome jackie

     

    Thank you for joining us and sharing so much you have had a lot on your plate and been through a lot, we don't do politics hear., I am untreated and my disease seems less of a problem these days, other issues have had the foreground. that is why I relate to your head and cognitive issue and the worries that it has created. I had a strike in the middle of the night three years back, following a smaller one a few days earlier which left me with a lot of head pain and cognitive issues for a few months. I still wobble a bit on the ladder as I decorate today. ( : I have removed dietry risk bad habits and now am on prophylactic medications to reduce my blood pressure and thin my blood. But remember so clearly the worry that something may go bump in the night again at any moment. That was very scary. You are right to keep on top of things and have yourself checked regularly.

     

    I am an animal lover your life on the farm sounds really interesting, look forward to reading more

     

    Nick.

  • Hi Jackie - you are so brave to share your story with us.  I felt so sad and greatly moved by your situation, what an awful time you have had.  Apart from the tragic loss of your husband you have so much else to cope with and the thought of a 34 day headache is barely imaginable, just dreadful.  It was good to hear that you are in a slightly better place at the moment. 

    You are so wise to check in every day with your parents and you sound as though you manage a good outdoor lifestyle a lot of the time and this can only be good I'm sure.  This friendly corner is an excellent place to release your feelings, we really are all here for one another.   

    Fatigue seems to plague us all to a greater or lesser degree and doesn't seem to be given a great deal of importance a lot of the time and it really is such a debilitating condition, so any tips at all to help it will be greatly appreciated.  Take care Jackie.

    To you and all our other friends here - Hugs from Junie xx [Good luck this week MagpieMike x]

     

     

  • Hi Jackie - as my fellow forumers have said (is there such a word?) Probably not! - welcome to our site and I look forward to reading your posts and am very interested that you are from Iowa. I think we have one or two members from Canada but I can't recall anyone from USA posting so it is great to hear from you!

    I was very sad to hear about the terrible time you had with your thunderclap headache - what a good thing your friend called round and found you. Also you wrote about your husband and his cancer - my very best and warm thoughts about you and the trials you have been through in your life.

    Jue is right - I think we would be able to spot anyone who is not genuine on this site - but I can only recall one person who raised my suspicions since being a member and we quickly saw him/her off - at any rate we never heard again.

    I would be very interested to hear your tips on fatigue which is a real problem of course for all of us. I gather you are still working (as well as looking after the farm animals). What happens in USA if you have leukemia but you do not have health insurance from an employer? Would you still get chemo under some sort of government scheme if you were not elderly? I would be very interested to hear.

    Best wishes Jackie xx

    Caroline

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