Adios everybody

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Comments

  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Not me Gary
    Sorry Gary..I meant Mike..
    I am glad you are still here Gary:))..I have had a lot of headaches lately and get a little mixed up sometimes. Sure hope this stuff isn't going to my brain..Most likely it's just one of the senior moments they talk about..Lots of brain fog lately:))

    LD

    Raj
    Fortunately for everyone here, LD, like iceman, Gary is part of the furniture. They are both longish term survivors and obviously have well-balanced lives in which they can afford the time to graciously and generously dispense useful information and invaluable encouragement to countless others in this boat.

    The majority of participants here are either ships that pass in the night or enthusiastic visitors who take up residence for a while and then go back to their 'normal' lives, usually enriched by what they have learnt in their voyages.

    Mike, writer that he is, gave an eloquent account of why he has escaped the Doldrums and set sail for healthier climes:

    "For the past 19 months I have thought about nothing but cancer. I’ve decided that this has to stop. I’m a Stage 1 with an excellent prognosis. I believe I still have a few books left in me. Being a member of this exclusive club has been a great privilege. I hope a few folks here have benefited a little by some of my posts. But I think this place has become a major distraction. I have been thinking too much about kidney cancer. ... Visiting here everyday has not helped me to stop thinking about it. It has practically consumed me. So I’m going to stop visiting and posting here. Cold turkey. It will be tough but I need to get back to a normal life. l just wanted to thank everyone for their participation here. It’s a great place to visit, but I wouldn’t want to live here."

    Before long, I too will probably tiptoe away, either by snuffing it or by surviving and taking a leaf out of Mike's book - too much living to do and a wish to write something more substantial than my ramblings here.

    However, I had been a little distressed at the disappearance of two other friends here, both of whom pondered/agonised over whether to enter trials for possible prophylactic purposes. Wayne went on an everolimus trial and I'd like to know how he's doing but I'm sure he's been golfing and skiing and enjoying life.

    It's another matter with Mr. High Anxiety, Rajesh ('livealive') who was contemplating a Votrient trial. I was becoming increasingly concerned about his sudden disappearance and so earlier in the week I called for him in New York and was infinitely relieved when he answered the 'phone and we had a pleasant chat. I had suggested to him more than once that he should seek professional help in coping with his paralysing anxiety. He has done so and I was delighted to discover that he has found a good formula for getting on with his life and sounds to be coping well. His adviser, I think sensibly, put an embargo on his continuing here. He was having a similar experience to that Mike narrated, but more so, with too much time, out of a busy family life and high octane professional life, being spent exchanging information here.

    He had become, in my view, an increasingly valuable contributor here but there's no doubt that, as the old saw has it, "charity begins at home". So, I suppose, we won't be seeing Raj here again. Nonetheless I was delighted in the extreme to hear how he's doing and I know he wants me to let his friends here know because I received an email from him today and I think I can do no better than just quote it here:

    "Dear T( ):

    Thank you for your call the other day, it meant a lot. I haven't checked the site, but I am very grateful to everyone, you, Lisa, Wayne, Gary, Fox, for the prayers, support, information, so much, that words will not adequately express. If there is anything I can do, for any of these people I want to.

    You remain in my thoughts, as do the others. Please let them know as a favor.

    Rajesh."
  • foxhd
    foxhd Member Posts: 3,181 Member

    Raj
    Fortunately for everyone here, LD, like iceman, Gary is part of the furniture. They are both longish term survivors and obviously have well-balanced lives in which they can afford the time to graciously and generously dispense useful information and invaluable encouragement to countless others in this boat.

    The majority of participants here are either ships that pass in the night or enthusiastic visitors who take up residence for a while and then go back to their 'normal' lives, usually enriched by what they have learnt in their voyages.

    Mike, writer that he is, gave an eloquent account of why he has escaped the Doldrums and set sail for healthier climes:

    "For the past 19 months I have thought about nothing but cancer. I’ve decided that this has to stop. I’m a Stage 1 with an excellent prognosis. I believe I still have a few books left in me. Being a member of this exclusive club has been a great privilege. I hope a few folks here have benefited a little by some of my posts. But I think this place has become a major distraction. I have been thinking too much about kidney cancer. ... Visiting here everyday has not helped me to stop thinking about it. It has practically consumed me. So I’m going to stop visiting and posting here. Cold turkey. It will be tough but I need to get back to a normal life. l just wanted to thank everyone for their participation here. It’s a great place to visit, but I wouldn’t want to live here."

    Before long, I too will probably tiptoe away, either by snuffing it or by surviving and taking a leaf out of Mike's book - too much living to do and a wish to write something more substantial than my ramblings here.

    However, I had been a little distressed at the disappearance of two other friends here, both of whom pondered/agonised over whether to enter trials for possible prophylactic purposes. Wayne went on an everolimus trial and I'd like to know how he's doing but I'm sure he's been golfing and skiing and enjoying life.

    It's another matter with Mr. High Anxiety, Rajesh ('livealive') who was contemplating a Votrient trial. I was becoming increasingly concerned about his sudden disappearance and so earlier in the week I called for him in New York and was infinitely relieved when he answered the 'phone and we had a pleasant chat. I had suggested to him more than once that he should seek professional help in coping with his paralysing anxiety. He has done so and I was delighted to discover that he has found a good formula for getting on with his life and sounds to be coping well. His adviser, I think sensibly, put an embargo on his continuing here. He was having a similar experience to that Mike narrated, but more so, with too much time, out of a busy family life and high octane professional life, being spent exchanging information here.

    He had become, in my view, an increasingly valuable contributor here but there's no doubt that, as the old saw has it, "charity begins at home". So, I suppose, we won't be seeing Raj here again. Nonetheless I was delighted in the extreme to hear how he's doing and I know he wants me to let his friends here know because I received an email from him today and I think I can do no better than just quote it here:

    "Dear T( ):

    Thank you for your call the other day, it meant a lot. I haven't checked the site, but I am very grateful to everyone, you, Lisa, Wayne, Gary, Fox, for the prayers, support, information, so much, that words will not adequately express. If there is anything I can do, for any of these people I want to.

    You remain in my thoughts, as do the others. Please let them know as a favor.

    Rajesh."

    update
    Thanks for the update Wedgie.Your follow through is admirable. You must be a hell of a lawyer. Never leaving any details behind... For many, the fear of one's own demise or even accepting such a devastating diagnosis is too much to deal with. For others it becomes time to move on. For some of us, our coping is strong due to our professional experience and understanding of human nature. I too may move on at some point. More likely I will post less often as new personalities become solid contributors. And as my health changes...Regardless of our long term prognosis, I think that I can speak for many. This board provides great information, compassion and support to us all. I value the commraderie and openness of our new friends with high regard. As different as we may be in our daily lives, and as unlikely most of us would be "buddies" or share the same social circles, we all have a common bond. We have exposed our private lives to strangers. We share our thoughts, fears and a shoulder to lean on. Looking back over a couple years of postings, There are many who have moved on .But I bet the percentage is high that they came away a stronger person and thankful for this experience. This board is dynamic and will constantly fluctuate. Thanks to all past, present and future.

    FLY, Fox loves you!
  • Vagusto
    Vagusto Member Posts: 86
    garym said:

    Good to hear from you...
    Hi Val,

    Haven't heard from you for awhile, how's it going?

    I hope all is well,

    Gary

    Gary
    Hello Gary!
    How are you? Just had my 6 month check up. I'm about 2.5 yrs post op. The appointment went
    well. My creatinine was better this time, so that was good news. I feel bad about not posting or responding much, but
    sometimes I "need" to shut the brain off and forget I had cancer. I also started a new, very stressful job.
    I hope you're doing well.
    Take care
    Valerie
  • Vagusto
    Vagusto Member Posts: 86
    garym said:

    Good to hear from you...
    Hi Val,

    Haven't heard from you for awhile, how's it going?

    I hope all is well,

    Gary

    Gary
    Hello Gary!
    How are you? Just had my 6 month check up. I'm about 2.5 yrs post op. The appointment went
    well. My creatinine was better this time, so that was good news. I feel bad about not posting or responding much, but
    sometimes I "need" to shut the brain off and forget I had cancer. I also started a new, very stressful job.
    I hope you're doing well.
    Take care
    Valerie
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    foxhd said:

    update
    Thanks for the update Wedgie.Your follow through is admirable. You must be a hell of a lawyer. Never leaving any details behind... For many, the fear of one's own demise or even accepting such a devastating diagnosis is too much to deal with. For others it becomes time to move on. For some of us, our coping is strong due to our professional experience and understanding of human nature. I too may move on at some point. More likely I will post less often as new personalities become solid contributors. And as my health changes...Regardless of our long term prognosis, I think that I can speak for many. This board provides great information, compassion and support to us all. I value the commraderie and openness of our new friends with high regard. As different as we may be in our daily lives, and as unlikely most of us would be "buddies" or share the same social circles, we all have a common bond. We have exposed our private lives to strangers. We share our thoughts, fears and a shoulder to lean on. Looking back over a couple years of postings, There are many who have moved on .But I bet the percentage is high that they came away a stronger person and thankful for this experience. This board is dynamic and will constantly fluctuate. Thanks to all past, present and future.

    FLY, Fox loves you!

    upate
    What a good comment on this forum and an interesting blend of eulogy and elegy. You're dead right about the unifying power of the RCC bond and the character gain that seems to be made in going through this kind of experience.

    [PS Having looked up the term "wedgie" (unknown in the UK, to me, at least) in Wikipedia I must say I'm not over-enamoured of the new moniker!]

    Since writing the above, I've been reflecting on the value of taking a step back to see the bigger picture. One reason these forums have such value, and the justification for the development of the Participatory Medicine movement, is captured brilliantly in a posting last year on KIDNEY-ONC:

    "My own take is that a fateful cocktail can affect doctors - it's
    composed of trained arrogance (med school 'You Are Incredibly Clever
    to Get to Medschool and Therefore Superior to Your Patients),
    tradition (We've always done treatments this way), professional
    ambition (yours is not a medically interesting case so I'm not
    interested), fear (if I do something/anything that is not 'in the
    book' then I am exposing myself to lawsuits and career limitiatoin and
    derision by my medial peers) and, I suspect, most fateful of all, a
    kind of 'emotional burn out' that, like it or not, makes them just
    give in when it comes to 'yet another' mortally ill patient (and this
    last also presents as a kind of hopeless helplessness as they know,
    from all their experience, that people die of this disease and their
    patients are likely to be in that cohort - a kind of mental
    pre-defeatism).

    Whilst I agree that, in the end, no one cares about our lives except
    ourselves and those who love us, I also have been in the patient-carer
    situation where I was learning - desperately! - as we went, going from
    a state of not having even realised one COULD get cancer of the kidney
    (we were that ignorant) through not realising that metastatic-at-Dx is
    usually eventually fatal (but hopefully not too soon, at any rate), to
    one of actually-we-didn'-t-realise-things-had-got-quite-that-bad....

    It was a non-stop race-for-expertise that my husband and I were in,
    right from the off, and it is just IMPOSSIBLE for a single person or
    couple to go from a standing start on cancer to becoming a world
    expert on every aspect of the disease affecting you (in 'real time' so
    to speak as the disease and the treatment options progress).

    Like Tara, our oncologist washed his hands of my husband when he
    pronounced DNR on him, and handed him over to palliative care and
    walked away. I felt gutted and betrayed and angry (and still do!). But
    I also know that I just DID NOT realise how close to death my husband
    was by then....but the oncologist did, and that's what I would not
    accept....

    So what's the solution? I honestly don't know. Something like a
    patient advocate I suppose, who is a proxy for the patient, but an
    expert one, and knows how to fight like the devil for whatever
    treatment is available. In the absence of such a being, a site like
    this is the next best thing, and the cumulative experience of all
    patients and caregivers."
  • alice124
    alice124 Member Posts: 896 Member

    upate
    What a good comment on this forum and an interesting blend of eulogy and elegy. You're dead right about the unifying power of the RCC bond and the character gain that seems to be made in going through this kind of experience.

    [PS Having looked up the term "wedgie" (unknown in the UK, to me, at least) in Wikipedia I must say I'm not over-enamoured of the new moniker!]

    Since writing the above, I've been reflecting on the value of taking a step back to see the bigger picture. One reason these forums have such value, and the justification for the development of the Participatory Medicine movement, is captured brilliantly in a posting last year on KIDNEY-ONC:

    "My own take is that a fateful cocktail can affect doctors - it's
    composed of trained arrogance (med school 'You Are Incredibly Clever
    to Get to Medschool and Therefore Superior to Your Patients),
    tradition (We've always done treatments this way), professional
    ambition (yours is not a medically interesting case so I'm not
    interested), fear (if I do something/anything that is not 'in the
    book' then I am exposing myself to lawsuits and career limitiatoin and
    derision by my medial peers) and, I suspect, most fateful of all, a
    kind of 'emotional burn out' that, like it or not, makes them just
    give in when it comes to 'yet another' mortally ill patient (and this
    last also presents as a kind of hopeless helplessness as they know,
    from all their experience, that people die of this disease and their
    patients are likely to be in that cohort - a kind of mental
    pre-defeatism).

    Whilst I agree that, in the end, no one cares about our lives except
    ourselves and those who love us, I also have been in the patient-carer
    situation where I was learning - desperately! - as we went, going from
    a state of not having even realised one COULD get cancer of the kidney
    (we were that ignorant) through not realising that metastatic-at-Dx is
    usually eventually fatal (but hopefully not too soon, at any rate), to
    one of actually-we-didn'-t-realise-things-had-got-quite-that-bad....

    It was a non-stop race-for-expertise that my husband and I were in,
    right from the off, and it is just IMPOSSIBLE for a single person or
    couple to go from a standing start on cancer to becoming a world
    expert on every aspect of the disease affecting you (in 'real time' so
    to speak as the disease and the treatment options progress).

    Like Tara, our oncologist washed his hands of my husband when he
    pronounced DNR on him, and handed him over to palliative care and
    walked away. I felt gutted and betrayed and angry (and still do!). But
    I also know that I just DID NOT realise how close to death my husband
    was by then....but the oncologist did, and that's what I would not
    accept....

    So what's the solution? I honestly don't know. Something like a
    patient advocate I suppose, who is a proxy for the patient, but an
    expert one, and knows how to fight like the devil for whatever
    treatment is available. In the absence of such a being, a site like
    this is the next best thing, and the cumulative experience of all
    patients and caregivers."

    Thank you T for that
    Thank you T for that posting. I had not read that but find it right on. I've personally become disenchanted with the medical establishment and personally believe they are unprepared for the onslaught of seriously ill patients that are filling their waiting rooms.

    I honestly do not see patients receiving the one-on-one meetings and consultations that you want and need in these situations. While I believe John's Doctor is good, I have to question how much time he has to devote to John. He's a research doctor, he teaches, he see patients, he's involved in monitoring trials on a 24 hour basis, and he's in demand for people being diagnosed with kidney cancer. And I've never met with him where there wasn't an unspoken feeling of being hurried. In fact, the last two appointments we've had with him have resulted in extremely long waits only to find out (from Dr. himself)that he had scheduled four appointments in the same time slot.

    Doctors like him surround themselves with staff that feed him information verbally and by reports. Verbal reports he shares with us are not always entirely accurate. Things are misread, misinterpreted, and misleading in some cases. My skepticism now wonders if this works like it does so when mistakes are made, there's a scapegoat in the wings.

    I realize I'm not in a good place currently as far as health care and I've removed myself to some extent trying to clear my mind by extending to other positive places such as fundraising for the NKF. But I'm worried that many out there are not aware of the lack of resources available for serious illnesses and we're all going to feel it at one time or another in the future.

    I know I'm rambling at this point but it's been an extremely difficult week. John's mom (my mother-in-law) died last week after a hard fight with kidney disease. And John has suffered with shoulder pain for over a month with no improvement. His doctor told him four weeks ago he would bring him in for a MRI, but Hopkins COULDN'T even schedule it until this week and it will be another two week delay. Hopkins is apparently backed up due to the new wing of the hospital opening and several areas of the hospital being moved to the new wing. I've asked why he cannot be scheduled at another Hopkins location and received no response.


    I've thought about encouraging John to go to another Doctor but that starting over is not something he prefers to do at this point. Sorry for the negativity. I need to go out and walk and listen to the birds.
  • garym
    garym Member Posts: 1,647
    foxhd said:

    update
    Thanks for the update Wedgie.Your follow through is admirable. You must be a hell of a lawyer. Never leaving any details behind... For many, the fear of one's own demise or even accepting such a devastating diagnosis is too much to deal with. For others it becomes time to move on. For some of us, our coping is strong due to our professional experience and understanding of human nature. I too may move on at some point. More likely I will post less often as new personalities become solid contributors. And as my health changes...Regardless of our long term prognosis, I think that I can speak for many. This board provides great information, compassion and support to us all. I value the commraderie and openness of our new friends with high regard. As different as we may be in our daily lives, and as unlikely most of us would be "buddies" or share the same social circles, we all have a common bond. We have exposed our private lives to strangers. We share our thoughts, fears and a shoulder to lean on. Looking back over a couple years of postings, There are many who have moved on .But I bet the percentage is high that they came away a stronger person and thankful for this experience. This board is dynamic and will constantly fluctuate. Thanks to all past, present and future.

    FLY, Fox loves you!

    fox,
    Very well stated, I've

    fox,

    Very well stated, I've seen many come and go and come back again (usually around scan time) when they need another booster to get by. Some have disappeared completely back to normalcy which is a testament to the success of this site.

    T,

    Thanks for the update on Raj.
  • lawmanmike
    lawmanmike Member Posts: 29
    I damn near burst into tears
    I damn near burst into to tears when I saw the heading for your post, Mike, because I thought you were saying the "final" goodbye, not just goodbye to this site. Not sure if you will read this but I've been feeling the same way. This site helped me through some serious struggles after my diagnosis and surgery and became a safe haven for me in some dark times. After getting back to work and "life as normal" (which I appreciate more than ever!) I felt the need to pull away from this site, but my recent scans brought it all back for me, and I have known two people to lose their battles with this disease in the last two months. Cancer sucks - and I don't know why my outcome was so good when it doesn't work out for others, but my first scans were clear and so far so good. I feel the need to give back and be there for someone else who is facing the same struggle but I'm just not sure I can do it yet - so I am very grateful for those here (like Iceman, TexasWedge and GaryM, and others) who seem to effortlessly contribute. Much love and appreciation to you all. Keep up the good work ... and Mike, I would love to read your books!
  • garym
    garym Member Posts: 1,647

    I damn near burst into tears
    I damn near burst into to tears when I saw the heading for your post, Mike, because I thought you were saying the "final" goodbye, not just goodbye to this site. Not sure if you will read this but I've been feeling the same way. This site helped me through some serious struggles after my diagnosis and surgery and became a safe haven for me in some dark times. After getting back to work and "life as normal" (which I appreciate more than ever!) I felt the need to pull away from this site, but my recent scans brought it all back for me, and I have known two people to lose their battles with this disease in the last two months. Cancer sucks - and I don't know why my outcome was so good when it doesn't work out for others, but my first scans were clear and so far so good. I feel the need to give back and be there for someone else who is facing the same struggle but I'm just not sure I can do it yet - so I am very grateful for those here (like Iceman, TexasWedge and GaryM, and others) who seem to effortlessly contribute. Much love and appreciation to you all. Keep up the good work ... and Mike, I would love to read your books!

    It ain't always easy...
    Hi Mike,

    Nice to hear from you, and thanks for the kind words. I'm not sure how I wound up becoming the welcome mat (so to speak) here and there have been many times that I have felt much like Mike did, but every time I start to think enough is enough another newbie pops in and I remember what it was like to hear "You have cancer." and feel all alone in the world. I have learned to feel good about the people that come and go envisioning them leading long and healthy lives and in the end I am always grateful for what they have given me.

    A fellow survivor,

    Gary