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Patients Against Lymphoma


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

Liz writes:

An unusually long post from you Ronnie... though you are not at all rambling.   There is  lot of common sense in what you say.  The bottom line is that we are individuals and consequently will have a diversity of ways of coping and living with lymphoma. Not everyone is going through the same thing with their disease, some may be having treatment, or facing or
recovering from it - in which case not so easy to put it on the back burner and get on with life. Others on W&W (watch and wait) also may have a variety of problems and all quite different from each other, or they may have no signs of lymphoma at all, feel great. I sometimes think one's state of mind fluctuates as much as lymphoma can at times. Nodes go up, or there is some other related problem, and the tension builds up; nodes go down and you relax, get on with life.   One could write a book featuring the diversity of reactions to diagnosis and ways of living with it.

Even denial has its place if it works for some people, though depending on what shape the denial takes. It can be destructive if a partner refuses to accept cancer and the whole burden is on the patient, as happened to a couple I know.   Or vice-versa when the partner/carer has to shoulder everything.  You could call that negative denial.  A more positive denial might be when someone has had treatment, is in remission, though knows it will return but chooses to "forget" about it other than regular check-ups. Though I really heartily dislike the terms negative and positive.

Others appear to be in denial because they feel they might burden others if they express their thoughts and feelings.  Sometimes they just need a little gentle, tactful coaxing.  Then there are people who are naturally reticent about mentioning anything about themselves, their lives; very private people.  They may not need to talk, being used to their personal privacy,
dealing in their own way with life, might even resent what they see as intrusion.  One could go on and on mentioning a whole variety of examples....

When you think of it, NHL lists such as ours and others represent a tiny proportion of the thousands diagnosed with NHL each year, plus survivors. So there are many thousands of people out there dealing with it in their own personal way.   There is no right or wrong way.... as you say, no right formula.

Liz ~ Scotland.
Dx 5/97. Mixed cell low grade follicular Stage I. Radiation. Later Stage II.
W & W.  Both groins, spleen, para-aorta nodes. Lymphoma-related Lymphedema.
CT scan 5/02,  some changes, still on W&W.

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