Need advice, support or just hugs .....

[livetohike]

My Mom has been in and out of the hospital twice in the last two weeks. It's a long story - but I'll make it short. Yesterday she was diagnosed with non-Hodgkin's lymphoma. It's Grade 1 and indolent, which means it is slow growing.

She is 79 years old and no treatment is necessary at this time. The doctors are in a "watch and wait" mode. The oncologist left the room with these words: "I don't often have the chance to deliver good news."

We lost my Dad to pancreatic cancer in Nov. 2004. My Mom lost her Father to cancer when she was 13 years old. He died at home - was laid out in the living room. This has affected her whole life. She is petrified and worried.

Maybe she just needs some time to absorb the news. She went to the hospital for an obstructed bowel and the doctors found the enlarged lymph nodes when they reviewed the CT scan. More to this story, but it's the cancer we are consumed with now. I just don't know how to soothe her nerves and convince her she will be okay. She will probably live with this for awhile - her mom was 92 years old when she died.

Thanks everyone.

[orleans]

1. i'm not sure what to say here

i'm not familiar with non-Hodgkin's lymphoma or it's time-line.
but here's my two cents.
read up on it, and get a book or two for your mom that can explain and clarify things for her. remind her what the doctor said. pay attention to her--she might get confused about it later, forget the details or forget what to expect--so be patient. explain it to her again.

try to ease her worry.

check into power of attorney for medical in case patient cannot respond (i should probably do this with my daughter actually). find out what type of medical directives your mom wants in case of emergencies.

give her your support. and again, be patient.

and learn all you can about non-Hodgkin's lymphoma. learn about the drugs, treatments available, and what your mom wants as far as treatment, and what she doesn't want.

you've got our support.
and hugs.
hang in there--your mom needs you.

[livetohike]

2. Thank you so much orleans for the good advice

support and hugs. My brother got the ball rolling with the POA and living will and will. I've printed out some info from on-line articles on non-Hodgkin's.

I am so grateful for our group - you all are a lifesaver.

[auntAgonist]

3. Big hugs for you and your Mom.

I can't imagine how scary this must be for her. Just the "C" word is enough to make anyone petrified. Given the family history I can see how this would affect her.

She probably will live with this for a very long time.

I guess, loving her, holding her, showing her that her life matters, involving her in day to day activities... in short doing what you've been doing all along, keeping life normal is probably the best way to help her through all of this.

Orleans has some great thoughts in the above post.

:hug:

I hope she's recovering well from the bowel obstruction.

aA
kesha

[livetohike]

5. Thanks aA

:hug: Curiously, the bowel obstruction cleared up on its own in less than 24 hours. She feels fine as she has no symptoms from the Lymphoma yet. Who knows how long she may have had the enlarged lymph nodes?

Yes, I need to get her involved in something. It's been a struggle since my Dad died. She doesn't drive and therefore will go nowhere unless someone takes her. She needs a connection to the outside world now more than ever.

[orleans]

7. at least she'll consent to going out

my mom didn't want to go out *anywhere* for *any reason* *ever* the last number of years. i couldn't even really get her to sit outside on the patio.

some park districts have senior activities, lunch, bridge, etc. check into that if your located near one.

i would have loved to have made "dinner and a movie" dates with my mom--or "lunch and a movie" but instead we stayed in--sometimes watching movies but mostly watching keith and rachel on the tv. and eating whatever it was i tried "cooking" (i can be a bit "kitchen challenged" at times--most of the time actually)

hair day, nail day (if she likes that sort of thing & can stand the terrible smell!) once a month-- and a mall day once a month.

(well, between all these various ways of getting mom out and about that probably will fill up her schedule for awhile--she'll need the rest of the week/month to recoup and catch up on her naps)

what about a dog? a small dog? is she up to walking a dog around the block every day?

[CC]

4. Can't blame her for being scared

or any of you. Read, read and then read some more. As you read write down any questions you have (and she has) to ask your doctor. A suggestion made to me the first time my SO had it was to get a spiral bound notebook with the pocket dividers. Write any doctor visit and test down. Write any questions down and even more important write down the answers/info the doctor give you. No matter how smart or good a memory any of you have questions to ask will be forgot and info given will be confused or forgotten. Always have someone go with your mom for both support and to take notes/ask questions. That was the best advice and saved us so time and emotion. We also stapled bills and insurance payments to the appointment/test pages. OMG the double, triple and quadruple billing was over the top when it came to test. Hoping things have changed since but doubt it. Keep track of everything. Since it sounds like hers is slow growing the billing paperwork might be a lot easier. We were dealing with chemo and its associated test etc.

Take time to get away from it. Go to a park, movie whatever but get her and those that love her away from it. Even if it is just a walk around the block it can really do wonders. We would remind ourselves that there were a thousand other ways any of us could die each day whenever our fear of the NHL overwhelmed us. YMMV on that but worked well for us.

The SO has fought the NHL battle 3 times in the last 17 years. His doctor considers it a chronic disease now instead of an acute disease. He responded well to chemo twice then a new drug came out that worked with his the third time. This is the first time he has been in remission for 5 or more years.


Good luck and my heart goes out to you and the family. It is a scary diagnosis no matter what type or stage, information and time to adjust seemed to help us and most around us more than anything.

[livetohike]

6. Thank you so much CC

I'm so glad your SO has successfully fought this NHL. :hug:

I am the recorder of all of this. I started her notebook from the day she entered the hospital. It's a great idea about stapling the bills, etc. to the pages, too.

Thanks for all of your advice and support. Bless you and your SO and family.

[RevCheesehead]

8. Oh, how I wish I could deliver a hug in person!

So cyber-hugs will have to suffice. Please share them with your mom, and everyone else in your family.
:hug::hug::hug::hug::hug:

The doctor sounds rather encouraged, and that is significant. Celebrate that.

This would be a good time for your mom to go ahead and get certain things taken care of, for the time "way down the road" when you need to know funeral arrangements, favorite readings, songs, poetry, etc. And if she hasn't, she could list what items she wants certain family/friends to have. Stress that this will happen way ahead in the future, but it's good to know NOW what she wants to have done.

The question I have is for you: how are YOU holding up in all of this? You know you have friends here, and I'm just a P.M. away, if you want/need to talk. Be sure to be good to yourself, so you can be there for her. Get enough sleep and make sure you eat. And above all, be sure to take some time for yourself, an occasional day off to recharge your batteries and lighten your spirit.

:hug::hug:

Ruth