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Shady....a suggestion

illead's picture
illead
Posts: 802
Joined: Aug 2012

 I think that it would be a good idea if you just start a thread where you can air your platform and complaints against any of us for repeating information, or whatever we say that you dislike.  That way even if you disapprove or disagree it will not discourage others, especially newbies who are scared to death.  You are welcome to use this as your new thread. 

ShadyGuy's picture
ShadyGuy
Posts: 261
Joined: Jan 2017

Seems I am upsetting some people, Ilead and the constituency she represents for example. That was not my intent. I will continue to reply to PM but will defer posting for a couple of months. A lot of good can be done here and I do not want to detract from that. I apologize for any offense and wish everyone well. In any case with my long days in chemo and bed I tend to check this site too often anyway.

I would like to leave with these thoughts for frightened people who come on here seeking comfort and help. You can find it but......

1). Having cancer is not an honor bestowed upon you by God. It is an awful disease and its ok not to be thankful for having it. Its ok to feel bad about having cancer.

2). Its ok to not feel “chosen” for having cancer or feeling honored to have it. Having cancer is not a ticket to heaven.

3). Its ok to be upset with having a more indolent form of lymphoma even if some people with much more aggressive forms are ” fat dumb and happy” with having the disease. You are not a whining sissy.  FNHL kills 21,000 people in the US each year. T-cell about 400. Your angst is justified.

4). Its ok to be occasionally depressed over your cancer even as some others feel you should be honored and feel chosen to be afflicted with it. Cancer sucks. Its ok to acknowledge that.

5). Its ok to believe your cancer is caused by defective DNA and not a blessing bestowed upon you by some supernatural being. It is mostly chemistry and dumb luck. You did nothing to deserve lymphoma. Its not your fault.

6). Beware of charltans who profit from your misfortune.

Best of luck to everyone, especially PO and Max who seem to be adrift. I am cancer ridden but fine. And I do not worry about going to hell.

Evarista
Posts: 208
Joined: May 2017

Hi Shady.  As I think you know, I am in agreement with your above points.  I guess that makes me another "secular" cancer patient?  That notwithstanding, I am also someone who adheres to a "Whatever gets you through the night" kind of philosophy. If some people take solace in belief in a higher power or a higher purpose, so be it. We can all agree to disagree and have done so frequently in the past.

I know from your posts that you have the skill set to read and understand the technical aspects of our molecular transformations.  But not everyone does, nor does everyone actually want to. And just like the rule "Keep one hand behind your back when working with something electrical", a lot of folks do it automatically, but do not understand the reason (not sure that's a great analogy, but best I could come up with re. physics).

For me, following the science is key and I've followed it long enough (~40 years) to appreciate the enormous strides that the field is taking. While sadly there is no cutting edge treatment out there for me yet, there well may be if/when I need it.  CD30 CAR-T are going into Phase I clinical trials even as we speak and may prove to be an important refinement for a subset of NHL's.  I hope you'll do well as you finish out your current treatment protocol. Hope to see you back soon.

PBL
Posts: 163
Joined: Jul 2016

Let me begin by saying that I, too, agree with all the points you have made here. I do not believe in such a thing as a cancer nobility, nor in the notion of "deserving" or "undeserving" cancer patients. I am not sure, however, that anyone has gone so far as to establish such a hierarchy in so many words...

Although I personally do not hold it to be any more helpful than fear, I think it should also be quite normal to be able to express anger at your diagnosis, declining state of health, grim prospects - whatever the case may be, and to get the help, support, and sympathy you need.

I also strongly believe that you belong here just as anyone else does - the only entrance ticket to this forum being a lymphoma diagnosis. Anyone - whatever their beliefs, psychology, schooling... - should be able to visit it as often as they want or need to. In that respect, please let me say in passing that I can see how it must feel for newcomers to walk in seeking help and advice, only to find that they have stepped into OK Corral.

I am sorry, however, that you feel the only way around the current situation is to remove yourself from the forum - be it temporarily.

This being a virtual venue, offers the great advantage that no one need react to any posts they may find inept or unpalatable... 

Like Evarista, I am quite certain that you have a lot to contribute in terms of comprehension and knowledge.

You will be sorely missed - hopefully, not for long!

PBL

po18guy
Posts: 858
Joined: Nov 2011

When I end up doing more harm than good, it is time for me to go. I sincerely apologize to all whom I have offended. I only hope that I can be forgiven. I wish the absolute best to all who are suffering.

Health and long life to all!

PBL
Posts: 163
Joined: Jul 2016

By the same logic, you belong on this forum, and your contributions have been appreciated time and time again, as you are well aware.

It is simply not the place for a virtual muscle-flexing contest between two alpha-males.

I, for one, hope this situation can resolve in a peaceful and dignified manner, for the greatest benefit of all.

PBL

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2985
Joined: May 2012

A great point regarding peace and the value of all participants, PBL.

I have always viewed myself as a "Charlie-male":  More sedentary and devoid of ambition than an Alpha or even Bravo individual.   One of my favorite lines in world philosophy is from the ancient Chinese master, Lao Tsu:  Reversion is the way of Tao. In other words, all peace derives from passivity and reflection.

max

illead's picture
illead
Posts: 802
Joined: Aug 2012

 With all due respect this forum is intended to bring comfort and support to each other and especially to newly diagnosed ones who are scared to death.  Our desire is that we can go back to the way this forum used to be, sharing our knowledge, support, comfort, experiences, hope etc. with each other and those who need it. 

Sincerely,

Becky and Bill

Evarista
Posts: 208
Joined: May 2017

Everyone has their own perspecitive.  I am not religious, but am not offended by those who are.  I sincerely hope the reverse is also true.  This whole "trip" is enough of a struggle without anyone feeling offended or snubbed.  Shady and Po, I welcome input from the both of you and hope that we will continue to see both of you here.

Anybody dispensing unsound medical advice or selling something can expect to hear from me though!  Be well, all.

Rexmax's picture
Rexmax
Posts: 39
Joined: Apr 2017

Truly hope you all stay! I don't  contribute much as it's all of you that are my lifeline! If it weren't for this forum I don't know where I would have found the courage and advice I received from you all. I live in a very small rural area and no where around any support groups. I finished chemo in September 2017 ( 90% Disfuse B-cell, 10 % Follicular) started Rituxan Maintenance September 2017 for 2 yrs had 5 and 7 treatments to go. For some reason I developed Hypersensitivity  vasculitis, not sure if Rituxan related waiting on a referral for a  rheumatologist  anyone else have this? Really hope you all stay I read this forum almost daily please take care and well wishes for all

Evarista
Posts: 208
Joined: May 2017

And glad that you are doing well!!!

PBL
Posts: 163
Joined: Jul 2016

Long time no see! Thanks for this really nice post. I hope it helps...

Sorry about the vasculitis. I've had other skin issues, but not this one, I'm afraid... Let us know what the rheumatologist says.

Kind regards.

PBL

Anonymous user (not verified)

Whew . . . I must have missed a whole lot of something in between all my whiny posts . . . .

I guess I'd like to offer my two cents, for what it's worth.  I'm a newbie to the world of all that is lymphoma, I'll admit.  Having gone only twice to the chemo clinic with my husband and watching all that toxic junk flowing into his body . . . I guess I'm not on "expert" on a whole lot of anything, except to say that I have found a treasure trove of support and a wealth of information I would never have found elsewhere in my short tenure here. 

As varied as the diagnoses are in this ugly world of cancer . . . are the wide ranges of everyone's experiences and how they are able to cope.  Some find religion a comfort.  Some do not.  Some seem to want to punch the darn thing they are suffering from in the nose (that would be me).  Some find survival and hope in alternative medicine and some can only trust that the more traditional treatments, the tried and true, are the only way to go.  Truth be told, I don't believe there is a "right" or a "wrong" way.  The goal should be to survive the dang stuff.  So, I say . . . cry when you need to.  Laugh when you can and curse the day this junk found its way into our lives!  What a boring world it would be if we were all the same.  There will always be an endless number of directions a person can choose to find their way home but the only thing that matters is that you end up getting there.

Be well everyone . . .

Appreciate all of you so very much!

Dawn

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