Where is everyone?

124

Comments

  • penitent
    penitent Member Posts: 79
    Sometimes there's just nothing to add

    When Opdivo is just humming along and scans are coming in good or 'okay'...there are large gaps of time between things to report on my son-in-law.  I don't have the cancer myself, so it's kind of a third party update.  Is John having a hard time?  Depends on the news.  His last scans were clear, but he couldn't have his infusion of Opdivo last Saturday because his liver enzyme numbers jumped from 40 to 140.  My daughter and he are having an emergency strategy meeting tomorrow...so I'll something new to report after that.

    I appreciate everybody's comments when I do post, but mostly I check in to see how you'all are doing yourselves.  Otherwise...I'm just not a very chatty person.

    Blessings to all.

  • marosa
    marosa Member Posts: 334 Member

    No excuses

    As a somehwat younger patient, I can speak for those who are Stage 1 and often want to "move on" from the pressure and worry of cancer.  I am guilty as charged that I lose myself in my son, my job and get too comfortable with myself.  The whole reason this site exists is to comfort and consult those like us and if you're not there to consult then why not just delete your profile?  I know how you feel.  I confess that some of the reasoning for not being here is technical... This site doesn't work right on mobile devices and I find myself using my iPad way more than my computer and this site is actually a preference that pops up automatically when I log on.  But I rarely use my computer to surf the web anymore.  So I kind of let CSN slip.  But I plan on checking more often now.  So I humbly ask permission back to the site.

    - Jay

    Jason its good to see your face!

    and your baby's!!!  Happy all is fine!

  • Allochka
    Allochka Member Posts: 1,060 Member
    edited September 2017 #64
    It is a very serious topic we

    It is a very serious topic we are discussing here. I also visit this site less frequently nowadays. One of the reasons - busy life. Our daughter has started kindergarten, and it is a pretty difficult time for her, plus lots of work/projects going on in my and husbands career.

    But second, most important reason - I am a bit of hypochondriac. So sometimes I'm afraid of coming here and finding out that someone from our gang with Stage 1 diagnosis has had  a recurrence... I immediately would start thinking the worst - what of my husband would get it too? I am trying to fight hypochondria at the moment (meds, therapy), so I am afraid that frequent visits and cancer discussions would destabilize me. It is not the problem of this site, this is my own mental problem which I am trying to fix.

    My apologies for not being here as much as it is needed by newbies and our old friends.

    Alla

  • angec
    angec Member Posts: 924 Member
    Foxy!!!  That is an awful lot

    Foxy!!!  That is an awful lot of people.  Where are they?  Lol. Actually, i have sent several emails to you but each time got a message there was an error, i gave up.  Sometimes i reply to posts and also get an error.  I try to get on when i can.  I have not been on top of the new meds etc.

    As you might remember i help mom who had stage 4 then was ned, then two stable nodes and now she had a major heart attack. She had a stent put in but had to stop the votrient due to possible interaction with the blood thinners she has to take.  She just went back on a few days ago. Mom just turned 85, diagnosed at 79 and was told by her surgeon she wouldn't make it long.  He was not too up on all of the new meds. 200 mgs of votrient along with homeopathy helped bring her this far.  Very busy with her, homeschooling my son and dealing with my RA and fibromyalgia. My brother had thyroid cancer, his mil had breast cancer, and his fil has prostate cancer.  There is no shortage on which way to turn next.  

    I have been on when i could to help when i can. But, my plate is very full and can't get on like i want to.  I always look for you and those other dinosaurs.  Miss our friends so much. I am sorry to see you having such a hard time. Are you still on Nivo?  Have you seen they are now taking tumors and fixing them and putting some cells back in to clear out the cancer?  Keep going for the new things, keep pushing for the latest treatments. Remember, you are our poster boy! We always want to know how you are. If i don't see a post i worry!  To all of our friends, stay strong, stay positive, keep busy and remember, rcc is now managed as a chronic disease. My mom, stage 4 doing pretty good for 85.  There is lots of progress and hope. Love you Foxy!  ANGE

     

  • angec
    angec Member Posts: 924 Member
    NewDay said:

    Why I don't post

    Fox,

    I love you!  Each time you start a thread asking why us old-timers don’t post anymore, I start to draft an answer, but then decide you probably won’t understand.  I’m not sure that extroverts can comprehend introverts. 

    I first joined the site in 2012 after I received my diagnosis and I was in a panic.  You, Texas_Wedge, IceMan, and others brought me back from the edge.  I was not close to my family, emotionally or physically.  I was a workaholic and didn’t have friends.  I was distrustful of people, but I was desperate and, thank God, this forum (and you) were here.

    A couple of months after surgery, I also joined ACOR (now SmartPatients).  I got some valuable information and advice there, but it scared me to death because most of them were Stage 4 and some were in really bad shape and people would die too often.  This site is more emotionally supportive.

    Since becoming Stage 4, I mostly stay on SP(SmartPatients) and don’t come here often and here is why:

    I am not the best encourager.  I feel I should not post unless I can offer encouragement or helpful info.  Often I will read a post by someone who is Stage 1 or 2 and the replies are telling them how lucky they are, forget about cancer, and go on with their lives.  I disagree.  Even Stage 1 patients have a risk of recurrence, and especially Stage 2.  I started out Stage 2 and my surgeon announced to myself and my family that he “got it all” and I was cured.  I worry about those advised to forget the cancer and move on because they may then not get follow up scans or even see an oncologist. I could post my opinion on all of those threads, but I’m going to be drowned out by all of the optimism.  I don’t think I’m a pessimist, just a realist.  Optimism is great to a point, but can go too far.  I can either post my less optimistic opinion and feel bad about that or post something I don’t really believe and feel bad about that or just lurk and not post and feel bad about that.

    I think this site is very important because SP can be too scary for newbies.

    I love you Fox and I rarely come back to this site except to check on how you are doing.  The rest of you are really nice folks too, but Fox holds a special place in my heart and I don’t want to come here and just bring people down or scare them.  That’s not helpful.

     Kathy

    Kathy, so good to see your

    Kathy, so good to see your post. Haven't seen you in a while. Hope you are doing ok. What treatment are you on? HUGS!

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    Hey folks, no more excuses

    Hey folks, no more excuses WHY you haven't posted.. it is all okay! 

    You have your lives and your personal reasons are fine. 

    BUT for those of you who don't feel you can post to newcomers, or because you're not good at being a great encourager, jut VALIDATE what they are going through at the time. Its THEIR experince not yours. But they want to know the process, recovery, pain issues, next step...things like that. You don't have to be a downer, or hit them with too much reality. Remember, they are NOT where YOU are now. 

    They just want OUR SUPPORT guys. 

    I personally know of one woman who left abruptly after being slapped by reality. i tried to reach out to her=no response, she just up and left us.

    AND..the email system doesn't always work. Told Admin too. 

    Post from your heart, when you have nothing more to day. 

    Remember, they are scared, in shock or in denial. 

    Know the stage of grief: shock/denial, anger/depression, bargaining, till, if ever, acceptance. And its not in that order. You can get stuck in any of these stages. THAT is when they come to us. Its for information and support. 

    Hang in there. For all of you are special and unique.

    Sending ALL  loving hugs, 

    Jan

  • FLOSSER
    FLOSSER Member Posts: 17
    Hi Fox

    I visit this site every so often to see the few that are still posting.(Especially Fox)It has been 4 years since my Captn Matt passed away from his kidney cancer mets. I stay busy with church. I live in the same home & work 3 days a week. I am the sponsorship chair of my county's Relay For Life. This year I raised $4,000 for the American Cancer Society. This summer I became a Hospice volunteer. There are so many ways to give back & keep busy. Glad to see so many of you still here helping each other. I will continue to check on you and pray for a cure for this awful disease. Hugs, SUZ

  • foxhd
    foxhd Member Posts: 3,181 Member
    Gee SUZ,

    I am so happy to hear from you. You lost the Captn, too fast. So sad. It is awesome you are so involved. I bet it is extremely satisfying. I can feel it in your post.

    Stay well. Everyone needs you.

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    FLOSSER said:

    Hi Fox

    I visit this site every so often to see the few that are still posting.(Especially Fox)It has been 4 years since my Captn Matt passed away from his kidney cancer mets. I stay busy with church. I live in the same home & work 3 days a week. I am the sponsorship chair of my county's Relay For Life. This year I raised $4,000 for the American Cancer Society. This summer I became a Hospice volunteer. There are so many ways to give back & keep busy. Glad to see so many of you still here helping each other. I will continue to check on you and pray for a cure for this awful disease. Hugs, SUZ

    Hi Flosser, glad you posted.

    Hi Flosser, glad you posted. Sorry for your loss and what you have been through with your husband.

    But yes, what a SPIRIT, to give back and do it so well. Hopefully others appreciate your efforts and talents!

    I am a widow as well, and my last job was in Hospice work. It is very rewarding!

    Sending you continued healing hugs~

  • love_of_my_life
    love_of_my_life Member Posts: 77
    Still Here

    Fox, you and many others helped out so much back with the diagnosis and surgery for my wife in 2012.

    I hang out on this board and check in once a month.

    Tomorrow is Holly's 5 year scan result appointment and the anxiety doesn't get any easier year after year.  You guys are the best.

  • pamstayner
    pamstayner Member Posts: 111 Member
    edited October 2017 #72
    I was lost

    for awhile.. on the Oregon Coast.  So was my internet... We are back at home in good old Sloughhouse, California.  I have survived the summer, and the "old" new normal starts over... again.

    I am passing my five year diagnosis in 6 days.  I am at 3 yrs, 9 months two weeks since being classed stage 4.  I joined after the brain surgery, and have had such great support emotionally here.  My friends found here are all important to me, and I check on you often. 

    It takes a Fox post to jolt me to pipe up again on this site... I played turtle after I read Stomps was gone.  I went through a tough summer,  and once I get a few more ducks lined up with oncologist tomorrow, I will catch up with all of you "oldies"  later on.  

    Still living, loving, trying to FLY... 

    Pam

    Pam

     

  • Mary H.
    Mary H. Member Posts: 17
    I post

    Just joined recently and have been  posting where there is something I feel I can comment about with some degree of knowledge.  Try to point out that I had a diagnosis, had surgery, and just got on with my life.

    Since you  rode a motorcycle, something you might find of interest:  We bought a bike several years ago, a big touring model.  Figured when we were semi-retired we could go on road trips.  But my husband quickly learned, from a couple of tipovers, that the legs he used to have and the legs he has were two different things.  So...sell the bike or convert it.  He spent four years turning it into a trike.  In June, 2011, 4 months after my surgery, we took off on a 26 day, 10 state, 4000+ mile adventure.  We did another trip in 2013.  Mostly the same states, but  visited places we couldn't go to before because of time constraints, but about the same distance.  In late August, 2014, my husband was diagnosed with lung cancer.  He went through treatment and it was gone.  However, in September, 2015, we knew our extended trip days were over.  We made plans during the winter for weekend trips to nearby areas.  The best laid plans....In February, 2016, he had trouble swallowing.  A trip to the ER.  Scan, scope, biopsy.  He had esophageal cancer.  Was given 6-12 months.  He lived only 7 weeks after the diagnosis.  Now...I have a beautiful trike...and no one to ride with.  Need to put it up for sale, but my heart won't let me do that.

    One reason I don't post much...I start to tell people how well I'm doing, being able to take the road trip and all that, and it segues into my husband's condition and death. 

    Anybody in the market for a trike?

  • Mary H.
    Mary H. Member Posts: 17
    Supersum said:

    Everyone has their own story.


    Everyone has their own story. One day things are humming along nicely next day there's a shock awaiting, there's a thing growing inside you which wants you dead. It happens to people from all different cultures, social classes, and demographic groups with vastly different personalities, all with varying levels of support ranging from a close extended family and a network of close friends to almost no support at all.

    All these people have different needs they don't all want to or have the confidence to start chatting with people on an Internet forum, even though they might find a huge amount of comfort and understanding from reading the posts of others.

    When I was diagnosed I undertook a crash course in learning about kidney cancer from all the documentation, websites, research papers, forums, and youtube. It wasn't in my mind at the time to join a forum and have a chat with people.

    There would also be a multitude of people wanting information about what is happening to their loved one, friend, classmate, acquaintance, neigbour, or colleague. These people generally do not have any real need to join a forum and start chatting.

    foxhd I remember seeing your photo in the early days of my investigation I remember thinking here is this big tough guy in a leather jacket he's been through what I am going through and he's still here nearly six years later this guy can be an inspiration to me, I will be like him I will tap into my inner tough guy and I will get through this hell.

    At the time I did not have any inclination at all to join the forum and start chatting.

    After my nephrectomy I realised this was going to be a very long journey so I joined the forum and tried to contribute when I could. However most times I don't post anything because I worry what I say is not right or my manner of communication is not good or I might seem foolish. A few times I have spent over 30 minutes writing a reply and then just deleted it because of this. Not everyone finds it a smooth process to interact on a forum, even those few who join. 

    Anyway brother you are not getting "further and further away from 95% of the topic posts affecting new RCC people". In fact you are getting closer and closer the longer you are here, you were right there with me long before I had my nephrectomy and joined the forum. You can't be there to give someone scared a hug, you can't drop by to go for a walk with someone feeling alone and depressed, but you can keep posting, offering your insights and friendship, and finding some comfort yourself when things aren't going well for you. 

    Keep on truckin' buddy.

    Your avatar

    Just wanted to let you know I love your profile picture.  My husband was part Lakota and his spirit animal was the hawk. 

  • lcsvb
    lcsvb Member Posts: 41 Member
    edited October 2017 #75
    I am still here too

    I am coming up on my 2 year "scan"niversary of when I started my cancer journey and y'all gave me great hope and advice before surgery.  I am so glad to see so many of you alive and well! I have moved from the hot humidity of Florida (surgery at Moffitt) to the arid desert of Arizona! I am in search of a good Doctor to switch to for my December scans and such. Do any of you have any recommendations in the Phoenix area? Is the Mayo clinic here known for renal cell carcinoma expertise?

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    Hello all! I have been very

    Hello all! I have been very very neglectful these past months. Please accept my most heartfelt apologies! Foxy was very gracious and mentioned me in a favourable way. But I didn't deserve that. I won't be making excuses, but life has been incredibly busy of late. Please know that I think of you all often and send out good thoughts hoping everyone is doing well (in fact, I woke up at 4:00 this morning thinkng of you!).

    On this site I have had the good fortune to (virtually) meet some of the kindest, compassionate and caring people. You people reassure me that there still is so much good in this scary world! 

    So as the colder weather approaches, I vow to participate more here!

    Lots of love and hugs

    Jojo

  • hardo718
    hardo718 Member Posts: 853 Member
    Jojo61 said:

    Hello all! I have been very

    Hello all! I have been very very neglectful these past months. Please accept my most heartfelt apologies! Foxy was very gracious and mentioned me in a favourable way. But I didn't deserve that. I won't be making excuses, but life has been incredibly busy of late. Please know that I think of you all often and send out good thoughts hoping everyone is doing well (in fact, I woke up at 4:00 this morning thinkng of you!).

    On this site I have had the good fortune to (virtually) meet some of the kindest, compassionate and caring people. You people reassure me that there still is so much good in this scary world! 

    So as the colder weather approaches, I vow to participate more here!

    Lots of love and hugs

    Jojo

    Nice to see that smiling face!

    You've been missed.  I hope all is well.

    Donna~

  • I am alive
    I am alive Member Posts: 315
    Still here!

    i checked into this site specifically too see what you were up to, Fox. And I see you are stirring the pot!!

    Happy you are here, happy you are encouraging folks to reach out. I've been gone for many months. Like other longtime members I get sad when regulars die. It makes me stare at my own mortalitY. And i miss them & feel bad for their families. And, like others, i tend to limit my comments to things I have personally experienced. Others are wonderful blanket encouragers and I stand humbled & grateful in their presence.

    I have Chromophobe, a rare RCC subtype. The good news, it's slow growing. Thirteen years since diagnosis, 9 years stage 4, drug-free for the last three years, five months while watching small, incremental growth. But a 4cm tumor was surgically removed from my shoulder, replaced with  a rod, screws & plates, two years ago. One year, four months ago  I  had spinal surgery (more screws & plates!) to repair spinal fractures incurred from radiation back in '11. I'm giving the litany of all this to leave a footprint for another chromophobe who might read this & see a long road ahead for him or her self. 

    I've got probably a half dozen tiny liver mets, and more groin & lymph node mets, and my onc wants me to begin Opdivo soon. No, he doesn't know of any chromophobe who has responded to it, but there are so few of us it's impossible to know if it doesn't work! So might as well try. And so life goes on, and it is good! I've said it before and I will say it again - you are my hero, Fox! Never leave us.

  • JackieP125
    JackieP125 Member Posts: 56
    6 Years NED

    Hi Everyone.  For the first couple of years before and after my neph,  I posted on this site regularly.  But since I had lots of complications during surgery, I felt it better if I did not share on this site for fear I would scare someone or cause unnecessary worrying. Since then I have still kept up with everyone by reading/stalking your comments.  So to answer Fox's question.....that is where I have been for the past 6 yrs.  I have kept up for Fox's post all this time because he is a miracle.  God Bless Everyone!  Praying for all fighters and survivors. 

  • saintmont
    saintmont Member Posts: 63
    why only post sometimes

    Hi people I only post sometimes  its because I'm in Tasmania. I am doing fine I like reading post but not good at expressing myself in posts. I have just celebrated 6 years since operation to remove RCC and 5 years of treatment I have being on an opdivo trial for 23 months . Before Opdivo I was on Affintor, Sutent,and Votrient. I have being a poster boy Opdivo in Australia I have being interview on TV about it. In Australia Opdivo has just gone on our PBS which means it only cost you $38 per infusion if your under the public system.

    Regards saintmont

  • Darron
    Darron Member Posts: 310 Member
    Still here

    Fox, old friend. I must admit, I am one of those who was relatively active when I was a cutting edge Nivo guy. I recently celebrated 5 years since diagnosis. It had the pleasure of reading my doctor's notes from my first visit When I was in for my infusion last week. It brought back a lot of emotion and reminded me that CSN was a huge place foe support as I struggled with worry. Since my arm of Nivo was never approved, nor will it ever be (Nivo plus Sutent) I had less and less to contribute. My recollection of diagnosis is not crisp, and I know little about the new treatments. 

    Honestly, I check in to see that you are still doing what you do best, supporting your friends. I read and post when i feel any advice I have is not redundant, but those times are becoming less and less frequent.

    as a stage IV cancer patient Passing 5 years, I know I can offer hope to many that the news of cancer doesn't mean the end. In the five years since, I have only missed work for 3 weeks, just after surgery. I missed a couple days for unexplained headache, but other than that, have lived a normal life. I have lost friends to RCC and feel almost guilty posting how well I have been doing.

    i am still here, still checking in and offering support where I see I can add meaningful input.