Anniversary

ron50
ron50 Member Posts: 1,723 Member
Gday all,
If you look at my joining date you will see that I have been on this site for ten years now. It has been a journey of mixed emotions,some hope mixed with a lot of sadness. I have lost count of friends that I have made and lost over the years. For those who don't know me I was dxd in 1998 with aggressive st3c into 6 of 13 nodes. I had 48 sessions of chemo over a year. It was a very old regime of weekly infusions of 5fu enhanced every fortnight with a dreadful drug called levamisole,a vetinary anti-parasitic. For whatever reason I have had no recurrance and remain ca free. Unfortunately being ca free does not equate to good health and I now live under the cloud of auto-immune disease with multiple and serious symptoms. Just this last week I have suffered my fourth attack of kidney stones since dx.
I have given a lot of thought of late to leaving the site. I cannot relate to the drugs all of you are now taking and I feel that any comments I make upon treatments have no basis of knowledge. What is worse is that my journey and the state I now find myself in has absolutely no bearing on what may be in store for tomorrows long term survivors. I find as my problems become worse the less positive i become about the joys of survival and that it is reflecting in some of my posts.
To those of you who are battling on under incredible odds I wish you the bet of luck and hope that the maintainence regimes you are on continue to work until something better comes along. To those long termers ,may you stay cancer free and to those newly involved you have my best wishes. A fond farewell to you all,Ron.
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Comments

  • ketziah35
    ketziah35 Member Posts: 1,145
    We Luv You Ron!
    Please don't leave the site. I believe that most people who are NED are going through some sort of side effect. If you read my post Neurapothy's Xmas and Thanksgiving, my mom's neurapothy is really botheirn her and she is weak. She finished chemo on Dec 23rd. One of her chemo buddies called her to remind her of her annivesary and they decided to celebrate. I encourage you to celebrate! Can you join a sipport group where you live? Aloneness sucks!

    I am not going to tell you where I have been in my life or things that I have experienced, but some are a doozy and this I know "Being alone sucks with challenges sucks!" Being around people that are accepting and supportive combats depression.

    Sincerely,

    Ketz
  • tommycat
    tommycat Member Posts: 790 Member
    Don't think any of us are
    Don't think any of us are ever the same--ever.
    But...if you'll forgive me....it does sound like you may have depression settling in. The are ways (incl. pharmaceutical) to combat that cloak of of what feels like doom.
    I guess I'm asking that you not cut off the support you get here on the Board. We are from all walks of life for sure, but this denominator that unites us, can also give us great unifying strength. Draw on it....
    Your Friend in California~
  • maglets
    maglets Member Posts: 2,576 Member
    tommycat said:

    Don't think any of us are
    Don't think any of us are ever the same--ever.
    But...if you'll forgive me....it does sound like you may have depression settling in. The are ways (incl. pharmaceutical) to combat that cloak of of what feels like doom.
    I guess I'm asking that you not cut off the support you get here on the Board. We are from all walks of life for sure, but this denominator that unites us, can also give us great unifying strength. Draw on it....
    Your Friend in California~

    ahhh ron
    I think i can understand your feeling the way you do but it doesn't make me like your decision to leave

    As a Canadian I have always counted on your great sense of humour and warm affectionate nature.....Ronnie I don't care if you know diddly about current drugs...another wild rover colonial that's how I think of you.

    If leaving is really best for you then give it a wee try

    but I personally wish you could stay.

    with great affection

    maggie
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Board
    Sometimes congratulations aren't in order when it is a certain anniversay they don't want to remember, like the anniversary of being told you have cancer, but I've always looked forward to your posts. You don't need to know anything about the current drug treatment, heck in a couple years they will be trying something else and getting rid of something they used for years. Your posts have always had a bearing on these boards. Please consider staying, or maybe just take a little break. Anyone that comes on the boards and shares a part of themselves make us all family. My best to you and hope you continue to share your thoughts with us.

    Kim
  • Nana b
    Nana b Member Posts: 3,030 Member
    maglets said:

    ahhh ron
    I think i can understand your feeling the way you do but it doesn't make me like your decision to leave

    As a Canadian I have always counted on your great sense of humour and warm affectionate nature.....Ronnie I don't care if you know diddly about current drugs...another wild rover colonial that's how I think of you.

    If leaving is really best for you then give it a wee try

    but I personally wish you could stay.

    with great affection

    maggie

    Just knowing you are still
    Just knowing you are still with us is encouragement alone! Stay!

    I hurt all over too! Three years since stage 4 DX
  • johnnybegood
    johnnybegood Member Posts: 1,117 Member

    Board
    Sometimes congratulations aren't in order when it is a certain anniversay they don't want to remember, like the anniversary of being told you have cancer, but I've always looked forward to your posts. You don't need to know anything about the current drug treatment, heck in a couple years they will be trying something else and getting rid of something they used for years. Your posts have always had a bearing on these boards. Please consider staying, or maybe just take a little break. Anyone that comes on the boards and shares a part of themselves make us all family. My best to you and hope you continue to share your thoughts with us.

    Kim

    Ron from
    downunder.i too will miss your friendly face.if you need a break i totally understand and if it is permanent i will truly miss your Gday mates.thanks for all your support thru the years....Godbless...johnnybegood
  • Brenda Bricco
    Brenda Bricco Member Posts: 579 Member

    Ron from
    downunder.i too will miss your friendly face.if you need a break i totally understand and if it is permanent i will truly miss your Gday mates.thanks for all your support thru the years....Godbless...johnnybegood

    I so hope you don't go... if
    I so hope you don't go... if it's best for you then so be it but if you are worried about not being "up" on the drugs these days then please stay. You are a survivor, we need to see you. I can relate to how you feel, I endured sepsis, mulitple organ failure and amputation. Yes, I survived but I have tons of residual issues. People sometimes are in awe that I survived and I am so thankful I did but just because I survived doesn't mean that I am not scarred emotionally and physically. I take a ton of meds everyday just to be as good as I am which is not always good at all. I live in pain physically and mentally from my medical past and mentally watching my husband fight this cancer. I struggle with people thinking it was all in the past because I live with it everyday. You are here for a reason! I hope you stay.
    Brenda
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Dear Ron
    Please consider staying. I understand your thinking about not being up on the treatments today. That does not mean your insights are of any less value.

    Just think...if you post just one thing which helps one person...your presence is of value without limit.

    If you really must leave us, I wish you well, but definately hope you will stick around and hang out with the rest of your family here.

    Hugs,

    Marie who loves kitties
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    G'day Ron:)
    As I've come to know you and the pain you have experienced, I must tell you that the route I've taken and the compromises I'm going through as a result of all of this toxic mess I put myself through - reminds me of your journey, Ron.

    As I've watched you these past couple of years, I've seen myself through you and thought that we shared the afflictions we have suffered in common. I remember this past year saying to myself that I'm going to end up walking down the path that Ron finds himself on.

    You were an early pioneer for sure. One thing I remember you telling me was that despite all of our medical advances all we can still really do is CUT-BURN-POISON our cancers.

    And the truth is "that's the truth", Ron. Spoken from someone who's been there. I'm in line behind you...only nearly 8 years fighting and you 13 years clear. But your case clearly points to the fact that even if the cancer fight ends, there are many pieces to pick up afterwards....and we not be able to put Humpty Dumpty back together again.

    Most folks think that if they get through cancer, then everything will be all hunky dorey and just a memory. What you have gone through and the way you see things is how I see alot of it in myself as well. Because, I can't speak for others, I only know what's it done to me.

    It's not all one big "nekkid happy dance" either. I don't see your posts as negatives - rather, I think of them as strengths, because I've been learning from you all of this time and I see alot of myself in you.

    I feel it is important to bring the other side of cancer to the table, we can't always be blowin' smoke up somebody's tailpipe all the time. Stories like yours and mine are the other side of cancer - the darker side that nobody wants to admit to or believe could happen to them.

    We are the story of long-term survivorship and long-term fighting and the fallout we've experiences is very relevant - maybe even more relevant than being up to date on the latest drugs in use. I think it's important that you not lose sight of that aspect of your survivorship. You did make it, but I know you've paid a high price for it.

    I fear if my fight continues along the pattern it's demonstrated, I might end up where you are at some point, until I decide that enough is enough.

    You're a good guy - and have been very supportive to me at all times - I've really appreciated that - I appreciate you taking the time to listen to the things that I've wanted to talk about. And I think you in particular can and have related to the long-term problems of what I've gone through with treatment as well.

    It's hard for me to get people to understand the perspective that I bring to the forum from seven and a half years of this stuff. It's great to have people like you around who can understand that and also understand the perspective with which I'm trying to tell the story.

    This board has always been about diversity, experience, unique personalities and our stories. I for one, do not want to subtract you from this equation, because I feel that we lose a valuable resource and a compassionate friend.

    Now, stick around, buddy. Take a break but do stay. We can't have 13 year guys takin' off, unless that is what you really need to do - I would understand and would get it.

    But, consider sticking around in some form, eh mate?

    -Craig
  • lesvanb
    lesvanb Member Posts: 905
    (((Hugs)))) Ron
    and I very much appreciate those (((hugs))) from you. You give and influence more than you perhaps realize. I am always grateful to find you in my corner.

    Love, Leslie
  • steveandnat
    steveandnat Member Posts: 886
    Wow you are well liked
    I can tell you are really special because of the longevity involved. I am amazed how many years it has been for you. I want you to stay in touch with all of us. I just wish I didn't have to have chemo any more. It has been 2 years 4 months straight and for those going longer it is a real show of your will. It is encouraging seeing you go this far and knowing you have made so many friends here. Stay on.
    Jeff
  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    lesvanb said:

    (((Hugs)))) Ron
    and I very much appreciate those (((hugs))) from you. You give and influence more than you perhaps realize. I am always grateful to find you in my corner.

    Love, Leslie

    Leaving
    Please don't. I never thought of u as being negative, but more the go to guy when things get really bad for people. Knowing that u have been thru it and are Ned is a huge inspiration to us new comers.

    You always seem to pop in at just the rite time.
  • funnyguy
    funnyguy Member Posts: 89
    Ron,

    I don't really know you, but have seen your posts over time. To think that you'd walk away from friends is hard to believe. That you would let time and treatment effects rob you of giving your survivorship experience to so many - doesn't seem to go with the strength you've shown in the past. I sure hope that you change your mind.

    A pathfinder such as yourself has so much to give. Recent survivors, like myself, likely owe our survivorship to people like you. Who had the strength and courage to step in and try whatever it would take to win.

    I can't imagine all you've been through; but I can say "Thanks" for making a difference.

    Cheers,
  • wolfen
    wolfen Member Posts: 1,324 Member
    funnyguy said:

    Ron,

    I don't really know you, but have seen your posts over time. To think that you'd walk away from friends is hard to believe. That you would let time and treatment effects rob you of giving your survivorship experience to so many - doesn't seem to go with the strength you've shown in the past. I sure hope that you change your mind.

    A pathfinder such as yourself has so much to give. Recent survivors, like myself, likely owe our survivorship to people like you. Who had the strength and courage to step in and try whatever it would take to win.

    I can't imagine all you've been through; but I can say "Thanks" for making a difference.

    Cheers,

    Ron
    Please stay, if you will, and just be a FRIEND. Many times I have wondered if I should be here. I cannot offer any firsthand experiences and medical knowledge. But I can offer compassion, concern, and sometimes laughter to my many friends here

    I first joined because I cared about one person, Johnnybegood. Being accepted here with open arms, I soon learned that there are many strangers here that became friends and I care about each and every one of them. In this life, friends are few and far between and I don't want to miss seeing even one of them.

    Your Friend,

    Wolfen
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    Ron
    Ron,
    You are very important to me and I know you are important to many on this site. It doesn't matter that the drugs are different. It is the heart of each of us that matters. You, Ron, have a great heart.

    I hope I see you around some more.

    Aloha
    Kathleen
  • buckeye2
    buckeye2 Member Posts: 428 Member
    I respect any decision you
    I respect any decision you make but selfishly hope you reconsider. You provide hope to many of us new in the journey. I think it's okey to not always be "Mr. Positive". I will take authenticity over positivity every time. Lisa
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    happy anniversary
    dear ron,
    all the best whatever you decide, stick around, you know at least as much as we do.
    do you really think the oncs know all the answers. as you said alot of the treatments are new and by definition the side effects are unknown.
    i love your fishing stories, your existance is incredibily positive even though i know your health issues at present are a real challenge.

    its the nature of that challenge that this site offers a place to vent and share.
    just thought.

    we need all the aussies we can get on this board, know one understands my sense of humour like a fellow aussie.
    hugs,
    pete
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    Ron
    It's always a bright spot in my day when I see your picture and the date November 2001, let's me know that hope springs eternal.
    Heck, I don't know most of the chemo's used here, mine were limited and just a few have had the same regime, that's doesn't keep my mouth shut about other things. Like advise on how to muddle through at times, joy and sorrows of my life. As Pete said just recently, this is our journal, our real life journal, reaching out to others, and having others reach out to us.
    I can see perhaps you wanting a break, but heck, please don't go out of our lives.
    Sure you have problems, but it's good to know, so we can watch out for those same things, so we all can see how to manage when we get those problems, so we know what others did before us.
    Your input is important in our lives Ron, and quite sincerely we would miss you too much.
    I ask you to please don't go away from us. You are our friend.
    lovingly,
    Winter Marie
  • TMac52
    TMac52 Member Posts: 352

    Ron
    It's always a bright spot in my day when I see your picture and the date November 2001, let's me know that hope springs eternal.
    Heck, I don't know most of the chemo's used here, mine were limited and just a few have had the same regime, that's doesn't keep my mouth shut about other things. Like advise on how to muddle through at times, joy and sorrows of my life. As Pete said just recently, this is our journal, our real life journal, reaching out to others, and having others reach out to us.
    I can see perhaps you wanting a break, but heck, please don't go out of our lives.
    Sure you have problems, but it's good to know, so we can watch out for those same things, so we all can see how to manage when we get those problems, so we know what others did before us.
    Your input is important in our lives Ron, and quite sincerely we would miss you too much.
    I ask you to please don't go away from us. You are our friend.
    lovingly,
    Winter Marie

    Ron Please don't GO!!
    Ron,
    You have affected my life in a positive way many times. I dont frequent this board as often as I used to but can never forget how it helped me so I wont go away completely. I like to lurk I read alot of positive post's and don't comment too often. But when I read yours I thought Ron is a great guy has been very helpful to me, I dont want to see him go!!

    I very rarely have any knowlege of treatments other than my own....I do not do research unless I have to....Statistics bore me...... and know it all's annoy me.

    But I'm staying reguardless.. If I can muster up the energy to say something I think will help someone I will, if I don't think it will help I will usually just read si I dont make an **** out of myself.

    We are all friends here bottom line. All having shared a common bond unlike no other.

    Stick around buddy/mate Tom
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    TMac52 said:

    Ron Please don't GO!!
    Ron,
    You have affected my life in a positive way many times. I dont frequent this board as often as I used to but can never forget how it helped me so I wont go away completely. I like to lurk I read alot of positive post's and don't comment too often. But when I read yours I thought Ron is a great guy has been very helpful to me, I dont want to see him go!!

    I very rarely have any knowlege of treatments other than my own....I do not do research unless I have to....Statistics bore me...... and know it all's annoy me.

    But I'm staying reguardless.. If I can muster up the energy to say something I think will help someone I will, if I don't think it will help I will usually just read si I dont make an **** out of myself.

    We are all friends here bottom line. All having shared a common bond unlike no other.

    Stick around buddy/mate Tom

    Don't go Ron ,don't go!
    You are an inspiration for most of us, as you know there are just a few 10 years survivors between us , we need the example of people like you !
    think on that Ron and please stay with us!.
    Take care my friend!