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I was diagnosed with diffuse large B cell non Hodgkin lymphoma 12/1/2024. I have just completed my 5 th of 6 RCHOP treatments. I have so many feelings and I just want to curl up and sleep. My family and friends have been praying for me which I appreciate, I just don’t know what to say. I am primary care provider and work full time. I can suck it up and put on a brave face and smile for my patients but that is not how I feel inside. I am looking for others who have been through this as well.
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I went through the same diagnosis in late 2023, Stage 2. I finished chemo (RCHOP) in late January 2024, six rounds. I had full remission after three rounds, went through a cautionary three weeks of low dose radiation, due to bulky disease. Suffered a bit of radiation burn. I am now 15 months in remission and just dealing with remaining side effects. The chemo was not as horrible as I imagined, and the remaining side effects are manageable. I hope it all is going well for you.
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Grinning and bearing is a quick way to bad mental health tbh. Just vent in anonymous forums like this one. Get a load off your mind.
Also, this is random but recently I heard that using Roundup weed killer caused a lot of non-Hodgkins lymphoma cases. They are filing a Class action against that. Let me know if you might be an user, I'll put you in touch with my law guy for a talk0 -
Some days I feel like I need to talk and some days I just need to keep my head down and power through. I have my PET scheduled but I find myself overthinking every symptom I feel every day. I want the cancer to be gone but then again I live in fear of what if they say it is gone and it comes back? At least while I am fighting I know the plan. This is such an overwhelming thing to go through. I really appreciate being connected to others who have been there, done that.
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I have "been there, done that." I'm sorry you're feeling this way. I was diagnosed with Lymphoma and had a new born baby at the time. I'm also a medical provider and tried to work though my chemo treatments, but ultimately decided to take time off which was hugely helpful. I didn't feel like I could take care of my patients if I wasn't fully taking care of myself.
I also feel your anxiety about your upcoming PET scan. I completed my chemo treatment nearly 2 years ago. So, I have my two year surveillance CT scan coming up in two weeks and I'm very nervous about my cancer coming back. I'd be happy to connect with you via email, if you want.
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Journey or battle? I notice that these emotions and feelings are very prominent among people like us. Some refer to it as “my cancer journey” while others talk of how they are “battling” cancer as in a war. Since lymphoma is literally your body attacking itself, I think of it as a civil war - my body fighting itself. Scanxiety is normal. I have declined any further scans until there are clear symptoms. That helps with scanxiety. Also don’t spend a lot of time researching it on the web. Try to get plenty of rest and live each day like there is no tomorrow. And like the song says “yesterday’s gone” so don’t expect things to ever be the same as your pre-cancer life. Life can still be very good if we let it.
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Impeto,
My 'journey' began 16 years ago, with advanced, bulky S-III HL. Since then, Stage II prostate cancer in 2014, an autoimmune disease in 2021, and relapse of HL in 2022, again as bulky, S-III. Last month, a basal cell carcinoma removed from my nose. My thoughts and emotional reactions to cancer have changed a lot over the years.
There is indeed a wealth of truisms and slogans among us survivors: Battle, fight, journey, and so on. None, of course, actually changes an outcome or our future medically, but it can emotionally and by, extension, spiritually. Some may argue that the 'spirit' discussion is nonsense, but that too is an expression of their own spirituality, a sort of anti-spirit, to which they are entitled.
One certainty is that scan anxiety can never do any good, and very likely is pernicious. I ceased to have any form of diagnostic dread many years ago. Not through effort, or because of some impressive willpower; it just happened. I did not will it to go away, and do not cling to a lack of fear.
I view a cancer diagnosis the way a project manager views a huge undertaking: How can we most successfully and pragmatically proceed. I begin to think of clinical best practices. Mostly, I view cancer has hugely inconvenient. Incapacitation and dying are massive impediments to living a life, and doing what I need to do for others. And it is equally, or more, inconvenient for them. I do what I can while I can, with peace and hope,
Max
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Max
I have been following you on here for a long time. You have been a great source of both information and inspiration. My approach has kept me alive for a decade. My medical history accompanied by natural aging has me dealing with side effects, the largest of which are neuropathy, dizziness and inability to sleep. These may or may not be related to my multiple chemos. Still I am very active and still exploring. I spend as much time as possible in nature. Please keep contributing here.
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Yeah Shady, we are old timers here, but I guess in our boat, "old" is good.
I had severe neuropathy for a few years after R-ABVD, and was even part of a clinical trial (which failed, 100%). Oddly, I have had significant worsening of neuropathy in my feet recently, and I never regained touch sensations in my fingertips. I have learned bass guitar as a sort of tactile self-therapy, and have enjoyed the instrument since starting. I do have dizziness at times, and on occasion just "space out." I attribute it to the 11 prescription drugs I am on (none of them are cancer-related, and none are narcotic).
Stay out in the woods…..modern people are nasty, rude, ignorant, and intentionally obnoxious. "Google" is all they know, and even their relationships are virtual — on a smart phone.
Medical care today, almost everywhere, is an assembly-line, almost factory, sort of experience. The following song is RELEVANT to what you wrote above. Three Dog Night still plays some small venues. Ironically, two of the core founding members (or more) have died, I believe both of lymphoma. I see the singer in the vid with the light beige/brown box guitar on music shows occasionally. I know he works at times doing background vocals with E.L.O.
You must highlight the link, and then right-click "Go To" to play it….
https://www.youtube.com/watch?v=49bl6FrgZTs
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thank you all for your support. Tomorrow is chemo #6 and ringing the bell. PET on the 24th to determine if car T cell is needed. I have moments of frustration and anxiety. Recently began pain in area of largest original tumor but ultrasound was negative. I am trying to keep my head down and keep fighting
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I was diagnosed a week before you. My 5th R-CHOP is next week. I'm 83 and hoping for the best as the numbers for older people aren't as good as they are for younger ones. Most of the time I feel positive but I admit that sometimes I feel like the universe is picking on me; especially in that week after chemo when I'm so sick. I'm sorry I can't call but the tumor was against my thyroid and damaged nerves to my larynx so I don't have much of a voice. My first appointment with a speech therapist was today; she thinks I may regain some of my voice. The last PET scan showed the tumor gone but there is still a shadow of something in my lung. I'm celebrating the disapperance of the tumor.
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Yes Max its a different world than we grew up in especially with lymphoma thrown in. I spend my time in the mountains, outer banks NC and rural VA plus an annual trip to Alaska. I try to get away from people. Everywhere I go I see people glued to their phones. Was recently watching a beautiful sunrise in Nags Head. Brilliant colors. A spring break group came out to the same spot. With all that beauty around them they were sitting glued in a trance like state to their cell phones. I see it everywhere. My grandson says one of his teachers will give them a task to do then lay back with her feet up glued to her phone while laughing and giggling. I use my phone a lot but do ZERO social media. It also is good for navigating thru the woods, music while driving, trading stocks and getting news but only once per day. Lymphoma sucks but life is what we make it with or without lymphoma.
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