NLPHL Diagnosis-Just wanted to say HI

tah188

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

vorzan

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

archangel724

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.

Beta13

Relatives and friends cannot possibly understand the feeling and fear that goes with cancer, so I do not expect them too. It has been a few months after my last chemo and I still feel tired and just cannot do the things I use to do. I guess this is not unusual but when it is happening to you, no one can possible understand unless you have been there. Sure, it is very easy to get depressed so I try to think of good things, like having flowers in my house every day. I set a certain time each day for prayer and for me, it is a big help. No magic formula, when your mind starts going negative, quickly go on to something you like to do. My very best to both of us.

po18guy

Stay active in your life. I expected cancer, so it never terrified me. I viewed it as a challenge, and one that I decided to face up to. Knowledge is power, so read up on your sub-type. Know your enemy. Pay attention to the most effective treatments and new drugs and even clinical trials that are available. I think it best not to give cancer more power than it may have. Face it down. Why? Love.

You love your life, your family, children, friends etc. Keep as busy as possible. Dig into an old project. Take up a new project. Get outside of yourself, as within we often find only self-pity. Do you have a cultural or spiritual practice, counselor or religion? All deal with human illness. All can help.