Adios everybody

Texas_wedge said:

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."

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

Texas_wedge said:

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."