Hey Team, I discovered a really informative site for us lymphoma patients. It has so much more info. It even tackles end of life issues. I now realize that my former onc team was negligent in informing me what to expect from lymphoma, treatment, and side effects. I wish I'd had heard these things, such as what to expect, but what I was told is most people tolerate R/B very well. I did not, it nearly killed me. If you would like plain language in-depth info, the site is lymphoma-action.org.uk I found it interesting, hope it's of help to you too.

While in the dreaded, yet blessed "WATCH & WAIT" stage... some of the care team don't want to be bothered to answer your questions when there are changes in your body!
Your labs are way off for Normal people, BUT not significant enough for people with "Cancer" ! So you drift in no man's land, no answers, no help, your a hypochondriac with puffed up lymph nodes and extrem lethargy... so since your Oncologist "team member " who saw you... doesn't warrant any ideas, the home front expects you to carry on as a normal productive person as well!
I want to run away! From my marriage, Oncologist and sometimes this current homelife of responsibility and be by myself.
I went back to the Oncologist to get copies of the bloodwork that had to take a week to come back.. (no one called me with results!! 1 was 110 points over High limits for tissue damage...) and to say I think I need to change Oncologist.
I asked why do I need to come here if asking a question is a bother to the NP? It's in my chart not to be treated by her in the first place, but they ask her my questions when I call or come in for bloodwork! She hasn't any people skills! She gave word that she's aware of "my History " Whats that supposed to mean?? That I don't understand these changes, and I don't want her interactions? When I last saw her and asked a questions... she was irritated and rudely said Look, Something else is going to Kill you first!
Wow!
Then why do I even need to come here? Do I have the equivalent of a hangnail?
I am soooo over this.
The depression of my Mom changing her will because "I am dying " , My husband refuses to acknowledge that "I have" Leukemia and lymphoma, incurable.." is down right more than the diagnosis. But the NP is worse than Mom and Husband put together! Thank goodness when I went in to tell them I believe I need to change offices because of her, they told me she is leaving in January! Praise God!!! I told them I can't put myself through this anymore. She may have a degree, but this is my life!
So they also made another note in my chart for a "different " NP to handle any calls or questions with bloodwork when I'm not seeing the doctor...ZERO contact with the NASTY NP!
So trust your gut reaction to respectful treatment... I have wonderful relationships with all my other doctors in other fields, and they were appalled when I told them about her attitude towards me.
Sorry for the vent, but there maybe someone else out there suffering through this too, who doesn't need too. We may have cancer in our bodies, but we don't have to have Cancer in a Doctors' Treatment of us a living breathing human.
Much Love and respect.

After the treatments and final scan, no one helps you with the post anxiety. They say, "See you in 3 months." There needs to be more post follow up for emotional help after what we've all been through.

After treatment when in remission it is not cured. Many folks are under the impression it is cured.

for me it's the fatigue factor that never seems to go away. The simplest things are a chore even after 5 years