NLPHL Diagnosis-Just wanted to say HI

tah188
tah188 Member Posts: 3
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Good morning!! I just recently got diagnosed, still going through staging, but it looks good so far. Seeing Dr. Jeffrey Barnes out of MA Gen in Boston!!! Hope everyone is doing good. A lot of the time I feel great, other times I get down in the dumps for a few minutes, then bounce back, LOL

Comments

  • vorzan
    vorzan CSN Member Posts: 9
    #2

    I just finished staging and am waiting to start. Yeah, lots of ups and downs for me as well. Any tips?

  • archangel724
    archangel724 CSN Member Posts: 2
    #3

    Hi Tah188 & Vorzan. I was diagnosed with Non Hodgkins Follicular Lymphoma, stage 3, grade 2 in March. Had my port placed April 8th & started my RB (Rituximab & Bendamustine..2 day treatment of immunotherapy & chemo) the following day. Just completed 2nd of supposedly 6 cycles on Wednesday & Thurs this past week.

    I totally get the insane roller coaster of emotions u both are experiencing. I’ve had the same. Terrified, crying one minute, or 15 lol and then “wait but I am expected to be strong & positive to fight”, the next. I used to think it had to be 1 or the other but soon came to realize..the roller coaster IS normal for such a life changing challenge such as cancer. There are no right or wrong feelings but u have to be easy/gentle on yourselves & allow them to come & express them. I also & u may too, feel the added pressure of others’ expectations of how I was supposed to feel/act. My immediate family I think, don’t know how to handle my diagnosis & I get the “why are u crying?? You’re gonna be fine”, “it could always be worse”, “u hafta be strong, attitude is everything”. Yeah, and u can kiss my rosy red arse b/c u have no idea what I’m going thru & cliches don’t cut it! It still gets me mad & feels very unsupported but I guess we have to accept that a lot of people just don’t know what to say, or need to distance themselves whether b/c of their own fear or unfortunately, lack of human sensitivity/compassion. I’m sorry to have rambled but my only tip is: take care of YOU rn. You’re allowed to go from fear, to positivity, anger to anxiety n tremendous sadness. Just please know that you’re not alone, you’re warriors who got dragged into a fight that no one should have to battle. Without sounding cliche myself, 1 minute at a time, 1 day at a time and when the time comes to start your treatment & fight..u WILL be ready & u WILL show yourself strength u never knew u had. I will be praying for u both & wish u the absolute best during this journey. I’m just an email away if there’s anything I can do to help.

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