A Letter to Caregivers of all NHL Patients…

Real patient experiences shared privately at www.TreatmentDiaries.com. Read more, share if you like or join in the conversation. Making sure you feel less alone navigating a diagnosis is important. Connecting you to those who can relate and provide support is what we do.TD logo

Dear Td Friends –
I hope you never need this information, but just in case, I’m posting (under Lymphoma) a starting point for your research. Mom emailed that she has cancer. Non-Hodgkins diffuse B cell Lymphoma. She said prognosis is great; new treatments very effective, AND her doctor tells her she won’t feel ill at all from the new chemo (RCHOP). The Cancer Center will give her a wig and drive her, if necessary (doctor says it won’t be) to and from appointments. Even better news: her bone marrow biopsy came back clean!

I told her that email reminded me of the phone call I once received from the babysitter, saying my daughter had been bit by a copperhead. The babysitter gave me the news so gently I actually asked her, “should I come pick her up?” The answer was, “uh, yes. She was bit by a COPPERHEAD!” While it turned out okay, she did need her mommy to be there if only to hold her hand and distract her from the pain. So, Mom, I asked, “Who is trying to make this easier on whom?”

It’s great that she has an extremely positive attitude, and I do not find myself worrying about her survival, but I am stressed over the doctor not preparing her for the possibility of chemo leaving her feeling sick at times. She not only lives far from family and friends, but also takes care of the person she lives with (who has Alzheimer’s). Things will be just fine if she is one of the lucky ones who does not feel sick from RCHOP chemo, BUT, if she does feel sick [and I’m 2000 miles away] who is going to be there to cook for her and encourage her to eat – and take over her role as caregiver? The Cancer Center people will help to a point, but I don’t think they’ll chip in that much – and now that the doctor has encouraged her to call off the help offered from a relative that lives 6 hours away, no one has even asked what would happen IF she felt too sick to take care of herself for a few days every 3 weeks?

I emailed her some information I found on two web sites (below). She printed it out, found it extremely helpful and later sheTD August 2 said, “I must thank you again, very much, for sending me all the printouts on the chemo treatment. I complained to the doctor that they hadn’t given me any advance lit, at which point she realized that they had rushed me into chemo so quickly, to stop the growth of my tumor, that they hadn’t had the time to give me the standard introduction session and the corresponding packet of lit. I now have it all.”I should take my own advice (which I guess is the same as the doctor’s and Mom’s) and not worry about something until it happens. I know that is a waste of energy.
On this web site, http://www.chemo101.com/ I learned that the first treatment with Rituximab is usually given very slowly to see if you have an allergic reaction: Tell your nurse if you begin to feel different at all during the treatment!
On this web site, http://www.lymphomainfo.net/blog/general-lymphoma-blogs/chemotherapy-drugs-101-the-r-chop-regimen , I learned you must drink plenty of water – and don’t take aspirin! But the most valuable thing there was the long list of possible side effects, which I printed out for Mom. That helped her know what to look for and when to call the doctor (because they can prescribe meds to counter some side effects). I’m thankful for the opportunity Td provides to learn from others and to share this type of information. I hope it is helpful to others. By the way…Mom is doing great.