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Patients Against Lymphoma


 Main Support > Patient-to-Patient Support > Being a Caregiver

Daisy writes:

     I remember that my brother tried to help us accept his condition thru humor and although it did ease us into acceptance it also kept us at a sort of emotional distance.  I think this emotional distance was important to him.  He did not want huge expressions of concern. Perhaps this would have felt weakening to him.  And I imagine for someone newly diagnosed the effort to stay strong and positive is a survival response.  I believe initially it should be honored however it is expressed.  

    The diagnosed person should never feel as though they have become CANCER with a small self caught inside...but are still themselves ... with cancer. Perhaps not wanting to talk about it at first is the process by which someone digs down deep for strength so that they can finally cope when some of the tough realities of treatment, etc. are activated. I think the most helpful practical approach would be to insure that this person finds the very best doctor in her area.  And perhaps the friend, if willing, could do a little research to keep current with what is happening in treatment.  She might ask to accompany her friend to doctor's visits...or at least insure that someone accompanies her... because there should be someone there with pad and pencil ... who takes notes of what the doctor says and asks the necessary questions. I think the important positive aspect of this person's reaction is that she is determined to get better... this means that although she doesn't want to talk about it ... she will go for treatment and strive to defeat it...the downside is she won't be an advocate for herself. But this is also an initial response to shocking news.  It seems to me an "I will beat it" first response is good ... undoubtedly she will need strong support when the time comes for her to begin to acknowledge  what has actually happened to her.  She will need someone close by to listen when she does want to talk. 

   When I first researched NHL ... and found out that indolent lymphoma was probably "incurable" this seemed to me the worst possible news.  However, thanks to this list and the proactive members I feel that viewing it as incurable is mistakenly self-defeating.  Rather view it as manageable ... strive to successfully hold the tide back ..because there is so much activity and research to discover more lastingly effective treatments that the idea expressed by Dr. Folkman that it will be a controllable disease similar to diabetes will be true in the near future.  This is why the concept of strong persistent advocates is so important.  Why it is necessary to present the facts to lawmakers and remind them of the widespread  existence of NHL and convince them that finding an answer to what will halt NHL's  onward progression will also answer many other questions concerning the immune system.  They need to be encouraged and persuaded to extend and increase research funding. 

     Perhaps knowing that this battle is being fought will help the newly diagnosed person view her future with a positive life affirming sense of hopefulness.

 All the Best, - Daisy

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