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Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3430
Joined: May 2012

Just wanted to tell my friends here that the prostate biopsy came back positive.

Very minor, Stage 1. Easily treatable with radiation or surgical removal. I've got to talk to a radiation oncologist and surgeon to make that decision.  Chemo is virtually never used on prostate cancer, and is never curative for prostate cancer.

This is not a life-threatening diagnosis, so "Do not cry for me, Argentina."  Also, it is absolutely unrelated to lymphoma.

I am posting regarding this on the Prostate Board, and will not tie up space here regarding it.

I was getting tired of wellness, and needed a little drama in my life !  I am totally OK with this, so you be OK with it also.

 

Any prayers welcome,

max

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

 

I had what I believe is my last CT for the somewhat suspicious spot inside my lung yesterday. When the pulmonologist spotted it about two years ago during a CT to determne if I had fibrosis, he said that protocol required that it be followed for two years with scans. He said it was not very suspicious, but did warrant following.

No increase in size at all during thses two years.  He even had his nurse call and tell me about it. How about that 24-hour turnaround ?

No cancer tri-peats for now; the lymphoma and prostate have been enough.

Wishing good scan results to all,

max

illead's picture
illead
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Joined: Aug 2012

Congrats Max, a big relief for you and your family.

Becky

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

Thanks, Bill and Becky.

I had a severe cough for about 15 years (that's right -- years).  Don't know why, but just coughed all the time for over a decade.  Then, on Bleomycin (a chemo drug that is known to often damage the lungs), my lungs got so weak I couldn't talk on the telephone, or at infusion. Many times people tried to speak to me at the infusion center, but I had too little lung power to speak. My wife had to help me to the car....

Well, now I have not coughed for two months.  No one knows why, but I just lost the cough.

Most nights, when I head home from work at 3:00 AM, this song is usually on.  The radio play lists are all on DVD; there are no DJs any more.  But this artist is so beautiful, and the song is just about, well, breathing.     "No one can find the rewind button."   What was ever truer than that ? 

Think about it next time you breathe, folks.   While I breathe, I hope. I love this song !

max

https://www.youtube.com/watch?v=M491t7LaRiA

 

max

Rocquie's picture
Rocquie
Posts: 838
Joined: Mar 2013

Max, you are right, this artist is so beautiful and so is the song. I love it too and thank you for posting it.

Congratulations on the results of your lung scan.

Rocquie

 

illead's picture
illead
Posts: 856
Joined: Aug 2012

That was a nice video.  Wonder if you finally put your cough on paper (like the song).  Man 15 years and now gone.....you must feel like you are a different person.

Becky

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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I'm using this old prostate thread of mine to report on my annual lymphoma labs, the results of which I got yesterday (Tuesday).

I have been in long-term follow-up at my cancer center for two years or so now. I now get full labs done annually, and then see a wonderful RN and NP who run a center to keep up with folks like myself.

Everything virtual dead-center normal on the panels (CBC, Sedimentation, LDH).  So, based upon touch exam and these results, "NED."  

We have had two or three new writers here in the last year asking about NLPHL.  Of the five or so of us with NLPHL who have been "regulars" here over the last several years, I have not heard of any who have relapsed, although three of us have had worrisome results once or twice that had to be investigated, all negative (my scarry result a few years ago involved significant anemia).   I am now 6 years, two months out from diagnosis.  When I got my first biopsy results then, I had not the slightest idea what lymphoma was.

I give thanks. Blessings and negative test results to all, ragardless of your disease,

max

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lindary's picture
lindary
Posts: 694
Joined: Mar 2015

Congratulations on the good results. It is always good to get great news like that. 

Linda

illead's picture
illead
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Joined: Aug 2012

Yes, that is wonderful news Max.  Thank you for sharing.  We put our worries on the back burner, go on with our lives, but it is always there isn't it?  I know what a happy day it is when you get that kind of news.  We are happy too.  Hope we can be happier as we get Bill's 3 month catscan report this afternoon.

Thinking of our special friend,

Becky & Bill

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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I find out tomorrow from my general surgeon when I will have an abdominal repair.  My main incision for DaVinci (robotic) removal of the prostate gland back in January started herniating (coming apart) about two months ago.   With robotic, this incision is (oddly enough) located above the naval.  It is now quite unpleasant to deal with, and makes me look like I have increased in waist size by about 4 inches.  My family doc had me push on it last visit, and said, "Feel this? This is pusing the intestines back inside."   AAhh !  The surgery is not dangerous, and may or may not involve mess fabric being inserted.  I should know this tomorrow also.   Curiously, my urological surgeon said that when this rupture occures, he does not work on it; the patient must go to a general surgeon.  

 

Sadly: You may have read that former Tennessee US Senator Fred Thompson died yesterday of "relapsed lymphoma."  (Nodular marginal zone NHL; a very rare strain.)  He was also a star in the show Law and Order.  

 

max

lindary's picture
lindary
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I enjoyed watching him in Law & Order. I got me attention when I heard lymphoma. I looked it up and saw that the lymphoma originaly hit him in 2004. Eleven years ago. 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Sounds uncomfortable and wish you sweet success A.S.A.P.!

You certainly have been through enough and hope you're feeling well soon!

Anonymous user (not verified)

sounds simple I hope and pray its a simple stitch-up. All my best friend.

Simon24
Posts: 45
Joined: Oct 2015

We are new to the Lymphoma board and I already know you as someone who is very helpful.  I am sorry to hear you need treatment that sounds pretty uncomfortable and will definitely keep you in my prayers. 

Simone

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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GKH, Simone, and all others: 

Thanks for your kind wishes.  Surgery is December 3, the surgeon says he will do it laproscopically, putting a mesh under the rip, from underneath.  This will be the fifth time this guy has worked on me: Biopsy, port install, port removal, and appendectomy.  He knows my guts !  

All I worry about is the general anesthesia (I have trouble waking up from a ten-hour sleep !). At least the prostectomy did (according to all tests) remove all of the cancer, which was the objective anyway. 

"Can't buy a perfect car; can't get a perfect surgery."  All we can do is deal with it and make the right choices.

 

Thanks again,  max

illead's picture
illead
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So sorry Max, that is certainly something we were not expecting to hear.  It doesn't sound like you have beeen very comfortable lately.  We are and will be thinking of you as your date draws near. 

Hang in there dear friend,

 

Bill & Becky

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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I started with a pulmonologist about 2.2 years ago, testing for shortness of breath.  What happened since most of yiou have read already. He detected fibrosis, both sides, and a small nodule in the lower right lung.  While he said it was most likely benign, he said that protocol required that it be scanned periodically for two years.  I had though about refusing the scans, but he said that would be "AMA" (Against Medical Advice), and could confuse insurance or treatment later, if such became necessary.

I got the two-year, final scan news today from his RN:  No enlargement of the nodule.   Presumption is that it is benign, and no further testing required.

 

I'm thankful,

max

Rocquie's picture
Rocquie
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. . . Max! Congratulations.

 

OO7's picture
OO7
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I too have been struggling with shortness of breath.  2 plus years.  Been to cardiologist, pulmonologist, thoracic.  I too have fibrosis.  I thought it was just stress due to everything yet when I'm most stressed it's gone???

Glad you have positive news!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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007,

My fibrosis was discovered only AFTER chemo ended (several years after, actually), which is why the doc thinks it was caused by reflux, not the Bleomycin.  I am told fibrosis is not curable, but stopping the progression is doable in most cases; mine has not worsened in two years.

I began breathing difficulties in 1986, after my chest cavity was crushed, but it resolved in the years following, until beginning chemo, when I at times I could barely breath at all.  I can recall episodes in bed when I would pant like a dog to get ozygen, when there was no exertion at all of course.

Like you I have been through the heart scans, the ejection fraction ultrasound, a slew of breathing function tests.  I have no explanations, because the doctor doesn't either.  I use Symbicort, which helps, although I find that  immediately after inhaling it I start coughing for a few minutes -- how ironic.  He also gave me an emergency inhaler, since he said I tested positive for something called "non-allergic asthma."  I have never needed to use that one.

Like Bob Dylan sang in his 70s hit Tangled up in Blue:  "The only thing I knew how to do was to keep on keepin' on."

Still keepin on; you do the same !

max

lindary's picture
lindary
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Glad to hear the good news. Celebrate!!!!

GSP2's picture
GSP2
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Steve

illead's picture
illead
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Yeah for you dear friend.

Becky & Bill

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

Thank you all.... I am driving across state down to Charleston for a two-day during the holiday weekend. May everyone be safe and give thanks. I remember when my goal in life was to live till 2013, to see my youngest graduate high school. Let us remember those who are struggling as well, for themselves or a relative,

max

Mary from NJ's picture
Mary from NJ
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Glad to hear the great report!  We plan to visit Charleston this fall.  If you have any advice, let me know.

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

Mary,

Feel very free to email me regarding trips to Charleston. It's nickname The Holy CIty comes from the multitude of churches and denominations that date from its beginnings. Charleston had no Puritans, unklike the Northeast. Its founders were nearly all Anglicans (Episcopalians in the US; CHArleston was initially an outreach of Bermuda).  Like Louisiana, many areas in historical times were named after the local Parish, not county. 

Charleston was very tolerant, however, and had one of the largest Jewish populations in North America, as well as a significant early Roman Catholic element.  Huguneuts (French Prostestants) were also common, as were Unitarians.  A week tour of Charleston could consist of nothing but seeing famous churches, and you wouldn't get to them all.

I grew up there, worked for years at the College of Charleston downtown (the 13th oldest college in the US; Revolutionary War soldiers camped on its grounds). Numerous movies partially filmed there, including Scarlett (I actually had a view of much of the filming from my office).  One thing I definitely recommend: Wait till the fall.   It was 97 the other day, with humitity at 80%, and a heat index of over 110.  Daytime temps of 100 are not uncommon.  All of the area is surrounded by massive swamps and tidal creeks, and the humidity is unbearable to people unaccustomed. The fall and winter are delightful however. Plus, the crowds clear out toward winter. I only go to the beaches in the winter time.  Summer is a massive tourist crush, and moving about is slow, hard, and stressful.

The Articles of Succession were signed there at St. Andrew's Hall on Broad Street, on property now owned by the Catholic Cathedral.  Signers of the Declaration of Independence and the US Constitution buried in its downtown graveyards; Magnolia Cemetery by itself is worth a trip to the town. Huge New Orleans-style maulsoleums; a huge Civil war burial area. The cemetery is open daily and free. You could spend two days walking it.

http://www.magnoliacemetery.net/

Blackbeard the Pirate frequented the town. Famous for ghost tours and haunted spots (like Savannah to the south).  Seafood, amazing beaches, some of the most impressive historic architecture in the Western Hemisphere. Too many huge plantations to list up and down the "Lowcountry Coast," which runs from around Myrtle Beach near the NC line, to below Savannah, near Jacksonville.  Massive tracts are environmental preserves.

Georgetown County, SC, just up the coast from Charleston, is especially full of preserved rice plantations, while Hilton Head is near Savannah. Kiawah Island in Charleston (formerly owned by the Kuwaitis) is world-famous for the Ocean Course golf course.  Boone Hall Plantation, open for tours, is claimed to be "the most photographed plantation house in America." I have no idea.  My cousin, who is a "gripper" in the movie industry, had a bit part there while the film North and the South filmed some scenes there.

You would need at least a week to even begin to see the area in any detail. Fort Moultry, across the Charleston harbor, is where Edgar Allen Poe wrote The Gold Bug, and just off shore is where the CSA (Confederate) submarine Hunley was raised. It is now in a preservation museum and lab in North Charleston, available for viewing.

The College: http://www.cofc.edu/about/index.php

Ocean Course: https://www.kiawahresort.com/golf/the-ocean-course

Boone Hall: http://boonehallplantation.com/

I know this is not cancer-related, so anyone wishing to write please do so via the email service here.

max

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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A 63 year old first-cousin down in Charleston got some ill-fated news two weeks ago:  He turned gold-colored one day and could not stop vomiting, went to the ER.

Scans and tests determined that every organ in his abdomen is covered with tumors, that began in the liver.  He is going home to hospice today. Oncologsits agreed that there is no form of treatment. They give him a month.  We was not sick previously. He has not eaten in a week, but is taking liquids.

In a roundabout, backward way, I see this as a positive, a teachable moment:  As I have noted repeatedly, lymphoma, given that it s very treatable, is one of the least tragic forms of cancer that a person can have.  We have hope, options. I was always of the opinion when on chemo: Tell me anything doctor, just don't tell me there is nothing you can do, nothing left to try.

Be thankful in your hope,

max

 

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yesyes2
Posts: 592
Joined: Jul 2009

I totally agree with you Max.  I've been very foortunite that my cancers have all been treatable.  And that most lymphomas respond very well to chemo.  If you have to get a cancer lymphoma is a good one to get.  It responds usually, regardless of the grade.

I am so sorry for your cousin and your families.  It just verifies to me that we need to live each and every day to the fullest, what ever that may be for you.

 

 

lindary's picture
lindary
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Max, I am sorry to hear about your cousin. I've known several people who have seen their Dr for what they believe was a minor issue. Then find out they have a terminal illness.  Sympathies to you and your cousin's family. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Thank you Linda, yes yes, and all others.

An updated prognosis from the oncologist is two weeks to two months. It is looking a lot more like two weeks.  No cancer treatments are ordered, just pain medications.

To repeat:  the point to be made at this Lymphoma Board is that this sort of prognoosis is virtually never applicable with lymphoma, even against advanced, stage 4 disease.

yesyes2
Posts: 592
Joined: Jul 2009

I agree with you Max.  But want to share a story that I saw unfold that really made me angry.  I know of a women who was recently diagnosed with DLBC lymphoma, stage 4, do not know sub type.  Because it was stage 4 and her doctor felt it would be a difficult treatment they decided to not treat.  This decision made my blood boil as most lymphomas are treatable and would have possibly given her more time.  But no, no treatment.  Directly into hospice and she died about 3 weeks later.  Very sad.  I don't know of any treatment of DLBC that would be that bad to not even try once.  I've done chemo for breast cancer (CMF) and 6 rounds of RCHOP neither of which I wouldn't do again if need be.  Just my rant.  All stages of lymphoma are at least treatable in some way.  Makes me both angry and sad.

lindary's picture
lindary
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When I was diagnosed the Drs I met with all gave a message of hope. What I read online gave a message of hope. Yes I read some downer stories too but that message of hope was - there are many drugs for lymphoma that are very successful. 

When I talked to my family I passed along the message of hope. When I talked to people at work, I passed along the message of hope. I got a lot of positive support and encouragement even though several years ago we lost a co-worker to Multiple Myeloma.

Yet in my husband's family there were several who started the conversation with "Are you dong to die?" before I even had a chance to tell them anything. One of them kept telling me I was in realy bad shape even though every time I talked to them I told them I was doing good. 

This kind of negative behavior terrible. It is so much worse when it is coming from a medical cancer specialist. Maybe that woman you knew did n't have a good chance but they should have tried. Heck, PoGuy's story should be proof to show the Drs aren't always right. 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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All of what you wrote I experienced a lot of, Linda.

While not open about it, there seems to be an assumption among many, if not most, people that a cancer diagnosis comes with a date to die by, set by the doctor. It is just part of the baggage.  But if you try to convince them that the prognosis is very good, they sort of smile and nod -- as if they view you then in denial.  Six years well since chemo, people at Church still act as if they expect me to collapse on the floor, and be done with....

.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Cousin died in Charleston a few hours ago. He was conscious yesterday. 63 years of age.

Home hospice.  He was diagnosed just a few weeks ago, doctors said he was untreatable, tumors covering all abdominal organs: Liver, pancreas, etc.  I don't think they even ID'ed where it satrted.  They gave him weeks to two months; weeks was the better guess.  He was one of the only male cousins I had in Charleston growing up; most other relatives were scattered all over.  Loved hunting, sports; he was a champion Golden Gloves boxer, football star.

I am fine. Bless everyone. You never know.

max

Anonymous user (not verified)

I am going thru a similar situation with a sister. Its hard. 

lindary's picture
lindary
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Sorry to hear your cousin has passed. 

illead's picture
illead
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We are so sorry for you both, Max and GKH.  No matter how much knowledge we have on the subject or how much we think we are prepared, we never really are.  Our thoughts are with you and know that you will and are a comfort to your families.

Our best,  Bill & Becky

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Took our 10 year old pointer to vet today, had been losing weight and weak.  Vet x-rayed, massive tumor covering spleen and liver, blocking stomach. Told me very likely a form of lymphoma, said spleen could rupture at any time, killing him instantly.

Had to euthanize.  Damn ! Even my dog !

max

Rocquie's picture
Rocquie
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I am so very sorry. . .

Big (hugs),

Rocquie

 

OO7's picture
OO7
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Max, how absolutely horrible.  I have no words of comfort to offer and I'm so sorry for your loss.  My pets are a part of my family and they effortlessly gives love, peace and happiness to my world.  I lost my 18 year old cat to cancer just after we rang in year 2000.  It was hell.  I cared for him for months and it was miserable to see him fail.  At least you offered him a peaceful loving departure.

 

Blessings to you, may you find peace.

yesyes2
Posts: 592
Joined: Jul 2009

Oh Max, so very sorry to hear about your dog.  I know how hard it is to lose our fur friends.  At the same time I was going through Chemo my cat Neo was diagnosed with Lymphoma.  His tumors were exactly where mine were.  Want you to know that you did good by your dog and not letting him suffer.  Sending good thought along with hugs.

 

PBL
Posts: 218
Joined: Jul 2016

Sorry you had to experience this on top of the rest.

I, too, had to have my twelve-year-old spaniel euthanized three years ago, when it seemed that there was no longer anything for her to enjoy in her day. Not a day goes by without a fond memory of her. She set a high example for bearing it all with equanimity.

PBL

illead's picture
illead
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No matter how long we live or what we have been through, we always seem to be jerked into reality, at least temproarily, by the loss of a dear pet.  Hope you and your family are okay, the loss of a pet always seems to make our problems worse for awhile.  I grew up with a pointer named Judge, he was so wonderful.  He spent many happy days pointing at the banty chickens in our back yard.

We are thinking of you and your family,

Bill & Becky

lindary's picture
lindary
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Sorry to hear about the loss of your dog. We have lost 2 previous dogs to the disease long before I was diagnosed. One seemed to be in the digesstive system and the other was bone cancer. Both were 10 years old at the time.  They will be waiting for us at the Rainbow Bridge. 

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

Friends,

I'm planning an extended furlough from the site, like my best friend's before me, which began a few weeks ago.  

The administration here leave so much to be desired...

Until soon,

max

 

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illead's picture
illead
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I don't know what to say Max, I'm so sad

Becky

yesyes2
Posts: 592
Joined: Jul 2009

Max, you will certainly be missed.  And although I don't often post your knowledge and kindness is greatly appriciated everyone on the board.  Enjoy your furlough.

Until next time,  Leslie

 

 

 

PBL
Posts: 218
Joined: Jul 2016

Yesyes2 said it all. I'm sorry to find that we will have to make do without one major resource - and a good person - on this forum. Hopefully not for too long.

Take care and do come back soon.

PBL

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

I am getting so many responses via mail that let me clarify: I am not quitting the Boards.

Everyone: your feedback is deeply appreciated.  I just need a breather (no pun from an asthmatic).  

When I think of how wonderful the people are here, I recall the great American poem To a Waterfowl  that I learned in high school. One line read:

Deeply hath sunk the lesson thou hast given/

And shall not soon depart.

 

.

lindary's picture
lindary
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When I first read your statment I thought you were leaving the boards permanently. I am glad to see that you are taking a "vacation". You are like the favorite uncle who is always there to listen and give guidance and support. But even favorite uncles need to take a vaction now and then.  Enjoy your break. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3430
Joined: May 2012

Linda,

I never used any Boards when I had lymhpoma; it was nearly three years into remission that I joined CSN. I don't even recall why. The prostate issue began years after that.

Many of my battles with friends with cancer were not online, but in person, face-to-face: I have lost three friends whom I knew well, and several others whom I knew somewhat from the infusion center, but who were dear, and later passed.  

I have neer been a 'social media' person (I use no social media at all), but the friends I have made here I could never voluntarily depart from.

max

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