what was your initial reaction to the word CHRONIC in the diagnosis?
The word ‘chronic’ felt like it was something really bad and life shortening so I was glad to hear that it isn’t.
My haematologist quickly explicit that ‘chronic’ meant it was actually ‘good’ leukaemia, ie that if you had to get leukaemia ‘chronic’ was the best sort to have.
Some days I wonder about this as the constant symptoms and side effects of my drugs get me down. However, from what I understand of acute leukaemia I am very lucky indeed.
I have chronic myeloid leukaemia - CML
I'm not sure how I felt at the time as got swept a long by "oh - that's it's a good leukaemia to have" (I wish they wouldn't say that as somehow you end up being grateful and dismissing what you have. (Or I did - in my mind it translated into being something totally minor!) And now 5 years on sometimes I feel sad about it as although I had treatment I still have down spells when I think of the uncertainty and the when will it be back. Dealing with any illness that comes up always flags up again that it's chronic and what might be going on. Most of the time, like everyone I expect, I just carry on as normal!!! I am very grateful for my treatment and future treatments that might come along though. Not sure if that helped but it's made me think!
I was diagnosed with CLL 14 yrs ago. When I was given the diagnosis, I can remember the scene in my mind as if it was yesterday. I just went into shock and all I could see was the word CHRONIC with great big zig zags around it in my mind. At that time the word meant imminently terminal to me. For a funny reason it had more of a effect on me than Lymphocytic Leukaemia. If only I knew then what I know now! What about you? take care.
well, chronic to me spoke of decline, deterioration and a slide toward the point of a need of intervention. also, it suggested poorer health treatment as the problem with the NHS is that is was designed for ACUTE and CHRONIC does seem the poor relation!
Hi meic, if you change the visibility of this conversation to community members only , you may elicit some more experiences from members.
Chronic was not a word I understood at diagnosis, I recall thinking the meaning of what i had been told was it's an insidious thing and that decline was imminent. II don't believe there is such a thing as a good cancer, even if you have a more indolent version than another. 'watch and wait is a tough one, when you have to wait to see which one you have??
Being diagnosed with any cancer and learning to live with it and navigate resources is life changing for the person diagnosed and the whole family. However having time to live well between therapy is a plus for me. So 9 years on and treated, 'chronic' now means 'slow growing' to me and very real, as it does not go away. It is not surprising that acute needs are prioritised when there is an urgent need for speed, Acute patients need access quickly to appropriate information and resources. There are few online support groups for acutes, The Leukaemia Care support group here is somewhere where we can support each other.
I agree there are important areas of unmet need for chronic patients, even though treatments have improved dramatically over the past ten years and information is becoming more available, it will take time to change perceptions. in the meantime peer to peer support groups like this one can be a lifeline to all of us..
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