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MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

I’m a writer. Not a good one, but a writer who has been fortunate enough to have had two books published over the last 10 years. I finished those books while working at a full-time job. It was a tough thing to do but, unlike other things I have tried in my life, I stuck with it. I retired in 2009 with the intention of devoting all my free time to writing. Who knows, I thought, I might have a best seller someday. The pipe dream of all writers. Then came that telephone call from my doctor and all of my plans flew out the window. I haven’t written a thing in the past year and a half except for postings here. 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 am a Christian, not a metaphysicist, but I think, like many spiritual ideas, there is at least some truth to the metaphysical theory that we attract what we think about most. 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. I leave the newcomers in the reliable hands of so many of you thoughtful and caring people. God bless you all and I pray for NED (no evidence of disease) for every single person here.
Regards,
Mike

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

Don't know whether you'll return even to lurk occasionally - but I think your decision is so wise! I've been coming less and less here - even though my journey with RCC is not over. I want to think about where my next adventure will be - I want to play with my friends - laugh at silly movies - cry over a great BOOK (and not illness). God bless you! I'll whisper a little prayer for that best seller (and hope I'm around to read it!).

LizB

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Sincere wishes for a "dream come true" future. While I don't know if you're checking in or not, I would be remiss in not thanking you for all you've shared in your postings. You have a gift for breaking down medical terminology into something comprehendable for most of us. Thank you for all you've given and best wishes for good fortune and best sellers.

Fishknees
Posts: 73
Joined: Mar 2012

It sounds like you have come to terms with the cancer. I read we need to not see Dr.Google too much. I still need more information so I will be around.

I am so impressed with all of you that have stayed here for years to support us newbies and oldies. It takes a lot of stamina to do so.

As a matter of fact, Iceman was the first to answer me.

I can;t thank you enough for being here for us but Kike I understand what you are saying.
Have a great life!
Fishie

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

A sensible decision and very understandable in your circs. It's been a real pleasure exchanging info with you. I imagine you'll stay on this thread long enough to receive goodbyes from all your friends here so I hope you will entertain a request for the titles of the books you've published. -??

icemantoo's picture
icemantoo
Posts: 1478
Joined: Jan 2010

Mike,

I can understand how sometimes you do not want to talk akout this. It took me 7 years to open up and get on line. When you change your mind you are welcome back. We need more than one voice for each challange on this board.

Icemantoo

j_rod
Posts: 125
Joined: Mar 2012

Thank you for all your help. Best wishes on your new free life. Time to live! (I am a reader, too. Please post the titles as Tex mentioned.)

Limelife50's picture
Limelife50
Posts: 409
Joined: Nov 2011

Maybe being here brings you down a little but then again you have uplifted a lot of people here with your support and knowledge ,why not try to just cut back a little ,would be better to have you around every once and a while than not at all.

Limelife50's picture
Limelife50
Posts: 409
Joined: Nov 2011

Maybe being here brings you down a little but then again you have uplifted a lot of people here with your support and knowledge ,why not try to just cut back a little ,would be better to have you around every once and a while than not at all.

rae_rae's picture
rae_rae
Posts: 266
Joined: Oct 2010

Totally understand as I have been thinking of stopping as well. Sometimes we can allow it to consume our lives(not this board, but thinking about cancer, cancer, cancer). Best wishes on your next book and a life with NED.

Best,

Rae

Beingbless
Posts: 46
Joined: Mar 2012

Mike, Since I joined this forum, you've been a great help to me! You will be missed and all the best in whatever you enjoy to do for the long long time..

God bless you, and do come back and 'visit' when you thinik of us....

Beingbless

Olsera's picture
Olsera
Posts: 38
Joined: Dec 2011

Sorry to see you leave. Wishing you the best of luck on writing the bestseller(you probably have enough knowledge to write a book on Kidney Cancer). Health & happiness to you & your family.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hi Mike,

Very sorry to see you leave, but completely understand and respect your decision to do so, I wish you all the best. You have been a great asset to the board and this will be a lessor place without you, I hope you'll stop by from time to time and let us know how things are going and where we can buy your new book.

Be well my friend,

Gary

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

It was difficult not posting for 5 days, especially with some of the recent questions being ones I could have helped with. So just one last post to thank you for the kind words. They are much appreciated. My final medical report will be that my CT scan (without contrast) showed no constriction of the inferior vena cava and I'm told there is no reason to believe that the cancer has spread to the inside of it. So my orthostatic hypotension and blood pooling in the feet will go "unexplained" for the time being, until they can come up with another possibility. That's good news to me, being better than the alternative. Thanks again, and sorry but I don't want to name my two books because then I would no longer be anonymous here. Not that I'm so famous that as soon as I mentioned the books you would know my name! Quite the contrary. But there's always Google and Amazon, where my name would be associated with the titles and my health issues would be open to the world. Best wishes to everyone and, again, I wish you all NED.
Regards,
Mike

Vagusto's picture
Vagusto
Posts: 86
Joined: Aug 2011

Mike
I wish you the best in everything coming your way!
Valerie

Vagusto's picture
Vagusto
Posts: 86
Joined: Aug 2011

Mike
I wish you the best in everything coming your way!
Valerie

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hi Val,

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

I hope all is well,

Gary

Vagusto's picture
Vagusto
Posts: 86
Joined: Aug 2011

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's picture
Vagusto
Posts: 86
Joined: Aug 2011

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

littledarlin's picture
littledarlin
Posts: 102
Joined: Mar 2012

I am just going to say so long to you for now..I don't like saying goodbye..I am hoping you will stop in, just to say Hello once in a while..

Looking forward to hearing from again soon..
LD

garym's picture
garym
Posts: 1651
Joined: Nov 2009

LD,

I'll be hanging around, its Mike that has decided to move back to the real world.

Just so you know,

Gary

littledarlin's picture
littledarlin
Posts: 102
Joined: Mar 2012

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

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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."

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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's picture
foxhd
Posts: 1873
Joined: Oct 2011

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!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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's picture
alice124
Posts: 860
Joined: Mar 2012

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's picture
garym
Posts: 1651
Joined: Nov 2009

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's picture
lawmanmike
Posts: 29
Joined: Jan 2012

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's picture
garym
Posts: 1651
Joined: Nov 2009

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

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