Where is everyone?

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.

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

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 post. Haven't seen you in a while. Hope you are doing ok. What treatment are you on? HUGS!

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

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. 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~

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

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.

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

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

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.

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