• Friendships/Camaraderie

    Asked by legaljen1969 on Friday, May 29, 2020

    Friendships/Camaraderie

    I was thinking last night about how much I enjoy chatting with all of you. It's strange that what we have in common is our "disease," but it's really a very positive place here. Sharing ideas, sharing opinions. It's been interesting for me to see how people process their treatments, their waiting news, and everything else.
    I look forward to checking in with you all at lunch time and in the evenings. I think we all sort of get invested in the journeys of each other. It's nice to have a place to discuss this where people "expect" you to talk about your cancer, your treatment, your surgery and they aren't like "Oh, you're on about THIS again?" I know for most of my family they are like "Well, you had your mastectomy. Now we will just put this "cancer thing" in the rear view mirror and truck on. You don't have cancer anymore."
    Here, it's comforting to discuss victories, fears, curiosity, anger or whatever. And we all "get it." In short, THANK YOU ALL>

    38 Answers from the Community

    38 answers
    • LiveWithCancer's Avatar
      LiveWithCancer

      @legaljen1969 - well said and I agree!

      about 1 month ago
    • Teachertina's Avatar
      Teachertina

      Indeed, we do get it when others just don’t want to deal with it all. I’m thankful to have this site to vent and help anyone else I can. It’s comforting to me and I hope for you too. Text anytime!

      about 1 month ago
    • Bengal's Avatar
      Bengal

      With the onset of the quarantine I lost pretty much all of my local support system. No more Group. No more support services offered through cancer center. No more swim therapy. I do still talk to my mental health counselor by phone but it's not the same as in person although I do appreciate her efforts to be there for me. So thank goodness for WhatNext. I can always count on my WhatNext family to be there. Whatever the issue I can always find someone willing to talk, "listen", argue, discuss, laugh, share experience, offer support or a shoulder. And it is so important to be able to talk to folks who "get it". So, thanks, friends.

      about 1 month ago
    • GregP_WN's Avatar
      GregP_WN

      I have always thought that talking about your cancer, treatments, side effects, the ups and downs and everything in between is therapeutic for most of us. And you don't have to pay $120.00 an hour!

      about 1 month ago
    • po18guy's Avatar
      po18guy

      We share our strengths, our weaknesses, our humanity.

      about 1 month ago
    • meyati's Avatar
      meyati (Best Answer!)

      Whatnext probably saved my sanity. I was so frustrated. I didn't fit in. Congress said more cancer support for patients, which is really a good thing that we need. Somehow NM Presbyterian can't process these plans very well.

      I went to one support group that met that day in an inner room-no windows. They told me that I needed to wear pink and I should wear a hat at all times- my cancer site was upper lip and nose. If any of you can figure that out, tell me. It just kept going that way.

      I started wearing a sun lotion on my face, which doctors and everyone said I should do. The 3rd day, the radiation area started stinging. I looked in the mirror and it was all bright red. I went to the ER, and they noticed that blood was seeping out of the pores on the radiation target. More and more doctors came in and they started arguing about what doctor they should refer me to. I wasn't mad at them, because they really wanted to help me.

      I should go to a dermatologist because it was a skin problem. NO its from radiation and she needs to see her radiologist. No way, Can't you see the blood? It's a hematology problem.. They argued for it being an ENT problem, an internal medicine problem, a cancer problem, a vascular problem,

      I felt hopeless. About that time, I opened my Email-- and there was a letter from WhatNext. It said-We were sent your name, because you can't get cancer support. Please join our Whatnext group. I did, I could say what I wanted without anybody telling to wear pink and see a shrink.

      I am very grateful for all of you. Thank you

      about 1 month ago
    • beachbum5817's Avatar
      beachbum5817

      I read the WhatNext Digest first thing every morning. I look forward to seeing the posts that everyone has made. I have learned so much from all of you. I don't often ask any questions, but the people that do seem to be thinking the same things that i am. I appreciate having so many friends that can help and support each other.

      about 1 month ago
    • ChildOfGod4570's Avatar
      ChildOfGod4570

      Believe me, this site has been a God send for me. I felt all alone in that I had no other cancer patients to talk to when going through active treatment. I couldn't get to any support groups, and my mother found What Next forme. The rest is history! I really find it helps to talk to people who can relate to the unique issues we face. HUGS and God bless.

      about 1 month ago
    • Jouska's Avatar
      Jouska

      Totally agree. This is a very safe place and a good place to ask questions or talk about one's illness without judgement or concern that "you're talking about cancer again". Especially during treatment it really is a focus and it is our job to work our way through treatment. I have also found it is a good place to give back. Sometimes I can answer a question, offer a word of encouragement or just convey how it was for me. Very grateful I found this place. I may post a little less often - I am 5 years out from treatment now, just had a good check up with my oncologist, but always glad to know I can check in when I need to do so. Stay safe everyone.

      about 1 month ago
    • MLT's Avatar
      MLT

      It is wonderful to connect to others with many different experiences. So helpful to get your support and be able to help others!

      about 1 month ago
    • MarcieB's Avatar
      MarcieB

      This site has helped me more than once. I had pretty much made up my mind to refuse to take a follow-up estrogen blocker (arimidex), but I asked about other peoples experiences here (I was pretty new to the site). After reading everyone's honest experiences, advice, and support, I decided to take it. I'm glad I did. Yes, I have some side effects from it, but I also have the peace of mind of knowing I am being pro-active in fighting for my health. And when any of those side effects are getting to me I can come here, rant, and get a bunch of; "I hear ya, sister!" shout outs from all of you - who REALLY know.

      about 1 month ago
    • sheri56's Avatar
      sheri56

      I too, am so thankful for this group. No one understands what you go through mentally, physically, and emotionally when you are on a cancer journey unless you have been on that journey too. The support here is truly a gift and a gift that keeps giving and giving. Only someone who has been on a cancer journey can understand that the journey never ends. Not a day goes by that I don't think about cancer. For me this has been going on for 10 years. We are in this community together! God bless you!

      about 1 month ago
    • Bengal's Avatar
      Bengal

      Sheri 56 you are so right. I have tried to have discussions with some of my doctors and realized I was wasting my time because they really don't have a clue what we're dealing with on a personal level. Then last fall one of my doctors, tragically, was diagnosed with cancer. Last time I spoke with him it was like talking with a different person. He even said, "I'm one of you now" . In other words, now he "gets it". It was before Covid19 so we hugged it out. But my point being, are on WhatNext folks definitely "get it".

      about 1 month ago
    • JaneA's Avatar
      JaneA

      This is a place where we can say what we really feel and know that someone understands.

      about 1 month ago
    • Bug's Avatar
      Bug

      I really appreciate being able to express a fear or concern here because no one tells me not to think that way, that I'm being too negative or being ridiculous or looking too far ahead, etc. When I have expressed fear or worry to some family members or friends it felt like they invalidated how I felt. I've actually stopped talking to them about such things. I have not felt invalidated here - just supported.

      about 1 month ago
    • Carool's Avatar
      Carool

      I agree with what everyone said. I saw a WhatNext post on Facebook. Because I’d been ten years out of treatment, I didn’t know if I should join. Greg encouraged me to join. I feel I’ve made some good friends here and have been helped and have helped. It’s a very personal cancer site on which people can get to know one another if they want to. I’m very grateful for WN.

      about 1 month ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      @Carool, I was trying to remember how I found WN, and when I read your response ... that's how I found it too! Someone had posted one of the memes that had the WhatNext logo on it. I liked the meme and went to explore what "WhatsNext" was all about. I joined that day and have been fairly active ever since. I've joined lots of cancer sites over the years, mostly lung cancer-specific, but I like WhatNext best.

      about 1 month ago
    • meyati's Avatar
      meyati

      I have no idea who sent my name in to Whatnext--My oncology radiologist-he said-NO. The Oncology chaplain? my ENT-I don't know-some nurse-maybe, My primary care doctor-could be
      But thank you Whatnext in contacting me.

      about 1 month ago
    • legaljen1969's Avatar
      legaljen1969

      I have no idea how I got connected with WhatNext. I don't recall being contacted by anyone or "invited." I think i just stumbled upon it. If I was directed here, I guess I was just in overwhelmed brain fog of the beginnings of trying to figure out what the heck was going on.

      about 1 month ago
    • Bengal's Avatar
      Bengal

      One of the members of our Cancer Support Group offered the link. I'm usually not much of an internet user but when I got home decided to just check it out. I think I was up until about 3:00 a.m.

      about 1 month ago
    • cllinda's Avatar
      cllinda

      I have learned so much here. A great bunch of people here that have the Big C in common. I often come here with an idea of who can I help today. If we can share our stories, our pictures and our respect, then it's a good place to be. In a crazy world, this is a safe place to hang out.

      about 1 month ago
    • meyati's Avatar
      meyati

      Legaljen--I went to your home page to talk to you for a minute. You ave a different format than the rest of us. If you visit other home pages-the top has what we want to share with others.

      Then there is a purple strip like a banner-that says--POST A MESSAGE ON THEIR WALL---that is an open invitation for WhatNexters to comment to you more personally. Right now, your Homepage isn't welcoming to others.

      There isn't anything here for privacy, which keeps us from being too snarky or bossy, but we do you to home pages and comment. Anyway-look at other WhatNext Home Pages and look at yours. It looks like you want others to know more about you. Anyway, you'll do what makes you feel comfortable. We all do that anyway.

      about 1 month ago
    • Bengal's Avatar
      Bengal

      Hmmmm? Just out of curiosity I clicked on legaljen1969 to see what her home page looked like. Looked completely normal to me including the post a message on the wall space. Very strange. Wazzup?

      about 1 month ago
    • MarcieB's Avatar
      MarcieB

      I just checked out legaljen's homepage and it looked fine to me too?

      about 1 month ago
    • meyati's Avatar
      meyati

      Okay-- I don't know- but all of you have the purple banner to leave a message, and on my computer- there isn't any banner. on her home page.

      I just ran my pointer- and her purple strip opened up on another page. Apparently my old PC is reading different coding. .

      I'm glad that all of you did comment about this. It is so odd, and it makes me sound so dumb--I really appreciate your help. If I see this again, I'll do some hunting to get in.

      legaljen, I hope that you aren't mad at me.

      about 1 month ago
    • Carool's Avatar
      Carool

      @LiveWithCancer - Yes! I check in on some Reddit cancer sites, but I much prefer WhatNext. It’s much more personal. Btw, thank you for mentioning Barryboomer (in another thread). I’d forgotten him. I miss, kind of, arguing with him.

      about 1 month ago
    • legaljen1969's Avatar
      legaljen1969

      @meyati. If there is something I need to do to "enable" people posting to my page, I can try to do it. I started my page and asking questions and posting updates. I haven't done anything to exclude anyone, but I haven't done anything to make my page exciting either. I don't know what is causing your difficulty on my page.

      about 1 month ago
    • legaljen1969's Avatar
      legaljen1969

      Meyati, I am certainly not mad at you. Your comment above says there is nothing here for privacy to keep people from being too bossy or snarky. I am trying not to be bossy or snarky. I am NOT trying to be bossy or snarky. I don't think it's what you want to do, but if you want to post to my page to be bossy or snarky, I would ask that you reconsider. I wouldn't go to someone's page to try to post bossy snarky stuff, and I hope others would not do it to me either.

      about 1 month ago
    • beachbum5817's Avatar
      beachbum5817

      I don't remember how I found WhatNext. I know that no one told me about it. It must have popped up when I was doing some research about my cancer. @Carool, I was just thinking about Barryboomer the other day. It took me awhile, but I finally came up with his name. He definitely faced cancer his way.

      about 1 month ago
    • Jayne's Avatar
      Jayne

      I agree with all the comments about the community - it's the go to place for people who understand. I've very thankful for the advice, support and camaraderie I've received over the years that I've been on this site and folks like Greg who keep the ship sailing!

      about 1 month ago
    • meyati's Avatar
      meyati

      legaljen-I didn't mean that you are bossy and snarky. I am the one with that tendency, especially if I'm not feeling good. Sometimes people that I really like tell me to back off. Because they are so supportive, I do listen to them- apologize and take a WhatNext holiday. This gives me a chance to be more centered.

      I will admit that we've had some really opinionated members on the crabby side.. Sometimes that is because they were near their end of time or going through a rugged time. You know that Greg is always kind, gracious, and supportive. I really admire him, and I try to be more like him.

      I wasn't going to post on your page to complain, not to tell you anything one way or the other. I just wanted to chat a bit, and ask how you are doing with everything going on.

      about 1 month ago
    • Carool's Avatar
      Carool

      @beachbum5817, he sure did!

      about 1 month ago
    • legaljen1969's Avatar
      legaljen1969

      @meyati. I hope you can get to the place where you can post a message to me. If not, maybe I can post to you and you can reply.

      about 1 month ago
    • meyati's Avatar
      meyati

      Sounds like a plan

      about 1 month ago
    • JustGrateful's Avatar
      JustGrateful

      I found the site through facebook and just dropped by to see what it was about. I read a lot of posts but don't post too much myself. But, when I have a question about something I usually get the answers and help I need. I'm glad I found it.

      about 1 month ago
    • legaljen1969's Avatar
      legaljen1969

      JustGrateful, we are glad you found us too. Like you said, you don't ask a lot of questions but the ones you ask are well thought out. And your posts are always kind and encouraging. Keep us posted on what's going on. Lots of people care about you.

      about 1 month ago
    • petieagnor's Avatar
      petieagnor

      Gosh! You all are all over the place & covered some real important ground. My insurance co. told me about WhatNext. You read right. I love this site. I'm able to chime in when I'm up for it. I do learn to ask questions when I want to know something. Right now, I'm very stable. It's comforting to know that there are people out there just like me with MBC. HIPPA won't let the medical profession share anything. Sad, but good.

      8 days ago
    • meyati's Avatar
      meyati

      HIPPA-don't get me going-I spent a good 11 months with a mystery disease. I went to a hematologist-who came close-body over reacting and attacking itself.. ENT thought I had a rare cancer-boggy ears, running nose-lots of mucous and swollen throat. -- GI wanted me to take meds that put me in the ER from bad dehydration-yes I had stomach problems too. Dermatologist that didn't recognize what I had on my face--small hives, infection under my skin, swelled lips big time, swelled eyelids. Now my ophthalmologist-she cried and hugged me.(best medicine ever0. It took the dermatologist working with an allergist to crack the code for treatment.

      The lab- biggest in NM-won't share the lab results with other doctors- and it won't allow all of the results to be in my electronic medical record. I honestly had the very same tests run within 24 hours, and I have only 1 vein that's accessible. I went in and had Bun-Creatinine, CBC, thyroid, and so on. The next day I had stroke symptoms--and the ER ran the very same tests over again.

      I needed an antibiotic for a sinus infection of 2 weeks. Medicare said that people in their late 70s couldn't be prescribed antibiotics, and I was prescribed Singular--in 4 days, I started becoming sick from that. It messed me up in many ways-and it makes me look like a street person that can't wash my face and might be infected.

      I hate HIPPA.

      8 days ago

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