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Understanding, Coping, and Alone...

angie_glover
Posts: 2
Joined: Jun 2015

Hey everyone! So glad to have found you guys. A little over a month ago my Dad (62 years old) was diagnosed with Lymphoma. It's Non Hodgkin's, stage 3, and aggresive. We live in different states approx 10 hours apart from each other. We are very close and I am having such a hard time understanding the disease, coping with him having to go through this and just feeling like no one understands how hard this hitting me. Including my husband. I have never had nor walked through a disease with someone such as the ugly "C" word. We talk everynight, but I do feel like he is protecting me. From some in my family I hear it's going to be a difficult fight, from him I hear "They are going to fix it". I'm confused!! I'm to far to go to his appointments with him so I'm not able to hear directly from his Dr. He has given me access to his health portal but that gets very confusing. What is written under "Diagnosis" is-- Lymphomas NEC extranodal/NOS--does anyone know what this means as far as the abbreviations? He has gone through one round of chemo and has his second tomorrow. He has lost his hair and having kidney problems..normal?? This soon? How can I help him? Any help will be greatly appreciated!! Thanks you guys!

Anonymous user (not verified)

NOS = Not Otherwise Specified

NEC = Not Else-wise Classifiable

i think this is correct but you may want to double check. Basically it seems he has a lymphoma that doesn't fall neatly into one of the 60+ standard classifications. That would probably not affect treatment anyway. So just know that this  is aggressive and can be cured. The indolent forms are generally not considered curable. he has odds in his favor.

angie_glover
Posts: 2
Joined: Jun 2015

Thank you GKH! That is a positive thing to hang on too. I'm in that lost state of surrealism right now. I'm focusing on reading all the success stories and battles won on here! I started with searching the internet. Not good! Again thank and any advice or thoughts are greatly appreciated! I love the sense of team and support on here!

Anonymous user (not verified)

The abbreviations NEC and NOS stand for "Not Elsewhere Classified" and "Not Otherwise Specified." !

j24
Posts: 15
Joined: Jun 2015

Being supportive is best! 

 

I am a caregiver for my Mom and often feel angry about my other family members out of state who don't deal with it on a day to day basis.

 

Whenever they call... she is so happy that she will mask whatever feeling she has to talk to them. As soon as she hangs up, its back to her normal self. They don't get to see all the downs, only the ups! They don't have to deal with all of the negative side effects, only hear about them!

 

I don't say this to make you feel sad about being far away, I just want to express that this is something that is happening 24/7. My siblings don't have to worry about canceling plans for doctors appointments or anything like that. Just try your best to understand that it is on everyone's mind all the time. Being there (even over the phone) as much as possible will be a huge help!!!

 

P.S - I apologize if this sounds mean! I just want to explain the persepctive of someone who deals with far away relatives. :) I will keep your family in my prayers! 

Animasgirl
Posts: 3
Joined: Jul 2015

Being told that you have aggressive lymphoma is scary...... for me it was large B cell NonHodgkins lymphoma.......very scary until a young Doctor whom I asked to please explain what it was because no one had really taken the time or maybe I went into shock and did not hear them ....He said that it gets worse before it gets better.In other words it's a rough go for a while He told me to pray ,I told him that I was a spiritual person not exactly a "go to church " on Sunday person ,he said prayer is a good thing as in pray in the way that you believe I asked him what religion he was , his reply was Muslim ...I will NEVER forget this wonderful man who helped me when I was in need of answers and hope.I am in "remission" ( such a strange word) But it was just a year ago this week that I was in the hospital for my last round of chemo .......

Animasgirl
Posts: 3
Joined: Jul 2015

P.s.   I am 58 years old ......after losing so much weight ,my partner made me wonderful smoothies with lots of fruit,yogurt,and remember to take probiotics ......Very important so that the good flora is not taken over by the bad in your intestinal tract ...that happened to me and almost wiped me out (nutribullet is a wonderful machine for making true smoothies out of everything ,no chunks!)

j24
Posts: 15
Joined: Jun 2015

I wanted to share this link I found, if you haven't seen it already. Hope it helps a little...

 

http://www.cancer.org/treatment/caregivers/caregiving/whatyouneedtoknow/what-you-need-to-know-as-a-cancer-caregiver-long-distance-caregiving

 

 

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