Topic: When we lose a moderator to the disease of Cholangiocarcinoma, we lose

Peter, Jeff, and now our Kris  selflessly devoted their time and energy to comfort us, to guide us, to support us, and to cheer us on in our world of Cholangiocarcinoma. 

They have forever imprinted their words of wisdom, compassion, caring, kindness, and insatiable sense of humor, on this site and in our hearts. 

Above all I admire their honesty in which they allowed us witness their very own approach to this cancer, as they have left behind a legacy of courageousness and compassion.

Rest in peace you wonderful people.  You have made our world a better place. 

I humbly salute you.

Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: When we lose a moderator to the disease of Cholangiocarcinoma, we lose

I am so very sad.   For Teddy, Kris and Kristen.....

Well now baby, tell me how have you been
We all have missed you
And the way you grin
The day is necessary every now and then
For souls to move on
Givin' life back again and again
Fly on, fly on
Fly on my friend
Go on live again, love again...

Stevie Ray Vaughan

still crying,
Betsy

Re: When we lose a moderator to the disease of Cholangiocarcinoma, we lose

Marion,
    Those three, plus so many more! There were so many that helped me and Tom when we began this journey 4 1/2 years ago. They are all gone..... I feel so sad that it's hard to come on here any more. We constantly have new members but I feel bad that all of these new people will never know Jeff and Peter and Kris and Teddy and Kristen and Jerry D. and Caroline and on and on. They all had so much experience and wisdom and wit to share and they did so selflessly. It really seems hopeless... this cancer is a monster. I've had experience with other cancers that can actually be "cured" and people can rest easy that it won't return. I don't think that's possible with this one. You always have to look over your shoulder and wait for the hammer to drop. Tom will be five years out from diagnosis in June and I just wonder every day when we will get the bad news. Every gas pain, bout of heartburn, nausea, chill, makes me think the good times will be over. I honestly don't see how they can continue very long. This cancer is relentless. The Drs. have always said so and unfortunately I'm afraid they are right.
        I'm sorry, Kris's death has really hit me hard. I knew it would. It seems so unfair for so many beautiful people to die so young. There is no rhyme or reason to any of it.... just tears.             Mary

Re: When we lose a moderator to the disease of Cholangiocarcinoma, we lose

Hear hear Marion,

To me ,Kris along with many others was a fantastic source of support in the early days with coming to terms with my Dad's sudden diagnosis and death from cc.

She selflessly allowed her wisdom, knowledge and first hand experience to be shared so freely. How difficult that must have been especially as she got sicker.....

May she Rest in Peace with the other brave souls who have succumbed to cc.

Katie

Re: When we lose a moderator to the disease of Cholangiocarcinoma, we lose

Well said Marion. They may be gone, but they will never be forgotten and will always be remembered by us all with the fondest memories possible. We all owe them so much and our world is a sadder place for losing them and everyone else to CC.

To Peter, Jeff and Kris, may you all Rest in Peace.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: When we lose a moderator to the disease of Cholangiocarcinoma, we lose

I will say this is why I go through periods that it becomes difficult keeping up with the board because ultimately, when surgery isn't an option (and many times when it is), the outcome is devastating.

I too am so humbled by so many courageous moderators on the board who I have grown to know so well, even though many are no longer with us. 

The legacy they leave behind is profound, and while some days it's difficult to be here - the courage with which they fought this disease keeps me going.  When I needed help and information when first faced with Ben's diagnosis - the detailed updates by so many helped me arm myself with knowledge.

To all of our fearless, selfless moderators I am forever grateful.  I don't know what I would have done without you.

Tom

Biggest fan of my partner Ben (51) who was diagnosed in August 2010 non-resectable stage IV.   Our new motto:   "taking it one day at a time".

Re: When we lose a moderator to the disease of Cholangiocarcinoma, we lose

Mary......I so much wish for us not to have to encounter these painful times.  We go way back, don't we? These wonderful people helped us along in this difficult world of Cholangiocarcinoma and they continue to do so.  Their postings are here to stay and are accessible to anyone, anytime.  That in itself is great comfort to me.  This board has enriched our lives and allowed us to share camaraderie unlike any other.  And, although, we so much wish to have met under different circumstances the reality is we would not have had the opportunity to do so.  Yes, we could have done without this type of reality, but we don't have a choice in that.  Like you, I so much wish for this cancer to become a curable disease and in some instances we have seen it to behave like that. But, only too often this board has given to us the opportunity to share the victorious times and to hold each other close in the time of extreme sadness.     
I much agree with yours and Tom's comment in that this board can be difficult to visit.  It is so very understandable.  But, we are here for each other.  And, that is priceless.
Huge hugs are coming your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: When we lose a moderator to the disease of Cholangiocarcinoma, we lose

Marion, 
  We all need to thank you, too for all of the time and support you provide and of course, the knowledge! Yes, we have been through a lot on this board. While we were going through our acute phase of treatment I was reading about your husband and Mark Clements and Valerie McCrea and so many others gone but not forgotten. It was sad to deal with those losses then and scary because I really felt Tom's case was hopeless. Of course after all this time he is still here and doing well. As I said before, there is no rhyme or reason to any of this.
   Ben,
  My husband did not have a surgical resection and is still here and doing well. In fact there are others on this board that did not have surgery and are doing very well. Many have had surgery, like Kris, only to have the cancer recur, sometimes very quickly! I personally don't believe surgery is necesarily a cure. At least not the only cure! I am a strong believer in diet and supplements as far as this cancer is concerned and radiation!! A lot of Docs don't believe in radiation because of the damage it will do but the liver will regenerate and I believe any damage will eventually repair itself. Scar tissue is an issue but it is with surgery as well. I don't really like the chemo approach but it has helped some.    Take care.  Mary

Re: When we lose a moderator to the disease of Cholangiocarcinoma, we lose

marions wrote:

I much agree with yours and Tom's comment in that this board can be difficult to visit.  It is so very understandable.  But, we are here for each other.  And, that is priceless.

Totally, totally priceless.

I do so agree with your topic heading, Marion - we lose indeed.  I thank God for the moderators who remain to greet & guide us & for those who have gone but who live on in their posts & in the love & fighting-spirit they have inspired in others.

We WILL get there.

"Time may be a great healer, but it's a lousy beautician."

Re: When we lose a moderator to the disease of Cholangiocarcinoma, we lose

Ditto to everything you said, Marion - and thank YOU for always being there for all of us. You are priceless, too.

Joyce M

Re: When we lose a moderator to the disease of Cholangiocarcinoma, we lose

So many people give so much on this site and each time one passes it is a huge loss to their family and to us.  I was so sad when I heard that Kris had passed because she was so brave and she, Jeff and you, Marion, were so much help to me and my brother when he was diagnosed.  This site was my constant companion for a while.  I learned so much when it was so important.  Marion, I know you have been talking with my brother (Mr J) and I'm so thankful for all the guidance and support you give.  There is a special place for wonderful people like you.

Re: When we lose a moderator to the disease of Cholangiocarcinoma, we lose

A big thanks to all of you too. 
Mary...I know that you have not signed up for this, but you have become a diet and supplement guru.  Tom has done well albeit not without a few problems along the way and you are a big part of this success. 
Julia.....your involvement with cancer in the UK is admirable.  Your enthusiasm and devotion will allow you to reach great heights.  More power to you.
Joyce.....I am thrilled to see you back on the board.  We have a very special connection, as our days of sadness occurred at about the same time.  I can't believe that your little girl is eight years old already.  When I think of growing then the last four years have flown by whereas, in other ways it moved painfully and slowly.   
Candy.....I have been thinking of you.  Your brother had mentioned that you are very busy.  I am happy that your brother had a good visit with his physician.  I realize that he has to make a tough decision regarding his upcoming treatment and I so much hope for him to have a fantastic response. 
My very best wishes to all,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: When we lose a moderator to the disease of Cholangiocarcinoma, we lose

Mary,

I have a follow up question to your comment about people doing well here that didn't have resections.  I must admit they are hard to find, and I a so glad your husband has done so well.  If someone could point me to some of the good news patients who have done well when diagnosed at stage IV, I would love to read them as I can't seem to find any and would sure like to read some good news in those cases.

Thanks!

Tom

Biggest fan of my partner Ben (51) who was diagnosed in August 2010 non-resectable stage IV.   Our new motto:   "taking it one day at a time".

Re: When we lose a moderator to the disease of Cholangiocarcinoma, we lose

Tom,
   I'm sorry that I can't go back through all of the good news section to point out everyone- I have horrible internet service and it just takes too long to go back through hundreds of posts. I don't know about being stage 4. My husband was never actually told what they considered him. He was told he would only have 6 - 18 months with or without treatment. Anyway, look up Andy from Britain, someone from Vancouver wrote about their father who had received no treatment and was four years out. Lisa is three 1/2 years and did not have a resection. Someone actually wrote the other day about doing well, staying stable, for at least three years now and they did not have surgery. There are others that have posted through the years. I don't know about moontje. They were doing alternative treatments but her Tom may have had surgery eventually. I spoke to a woman I met at a flea market that told me her husband had been living with cc for over 4 years and had remained stable and doing well. He could not have treatment because of cirrhosis. Andy and my Tom are the only ones that I know of that have had their tumors actually go away, but the others have remained stable and are doing well without going through the ordeal of surgery. Someone just said the other day that their surgeon told them there was a fifty per cent chance of the tumor coming back even with clean margins. It really seems to depend on whether the cancer is aggressive or not. If it is the aggressive type then I'm not sure there is anything anyone can do. My point is that surgery is great if you can have it but I'm not sure that it is the only cure. You shouldn't lose all hope if it isn't possible!   Take care, Mary

Re: When we lose a moderator to the disease of Cholangiocarcinoma, we lose

Mary, thanks so much for taking the time to post...obviously there some shining lights out there so I think every time I am feeling down I am heading to the good news section.  It always helps!

Tom

Biggest fan of my partner Ben (51) who was diagnosed in August 2010 non-resectable stage IV.   Our new motto:   "taking it one day at a time".

Re: When we lose a moderator to the disease of Cholangiocarcinoma, we lose

Tom,
  Believe me I understand about getting down. My husband had an attempted resection and when the surgeon came out and said he couldn't do it we were devastated. We thought that was the end. Fortunately at OSU, they use a team approach and all of the specialists were called in to review his case, Surgical Oncologists, Radiation Oncologists and Medical Oncologists and they put together a very aggressive treatment plan for him that worked. Has Ben seen a Radiation Oncologist? Not everyone is sent to one and that bothers me because all of the specialists approach treatment differently. It was really interesting at the time to deal with the three different doctors and teams. I found the surgeons and radiologists to be the most optimistic. They were all great but the Medical Onc. basically pushed chemo more and we weren't  and still aren't too keen on that.   Take care and best wishes for Ben.  MAry

Re: When we lose a moderator to the disease of Cholangiocarcinoma, we lose

Tom,

I was diagnosed at stage 4, inoperable with 3 to possibly 14 months.  That was over 17 months ago.  I've had radiation with 5FU chemo in 09 and Gem/Cits in 2010.  My tumor has never changed size and no new tumors have presented. I am STABLE!

The first year was the roughest with a couple of hospitalizations for blood infections, but most of the time I have felt great (except during the two months of radiation and 5FU chemo which were given shorty after diagnosis).

God bless you both.  There is always hope.

Kathy

Re: When we lose a moderator to the disease of Cholangiocarcinoma, we lose

We are so sad,  we were so blessed,  they are so missed...  forever in our hearts. <3

Re: When we lose a moderator to the disease of Cholangiocarcinoma, we lose

Somehow I missed this post.  Yes, I totally agree with everything that has been said here.  They will all be with us forever and their voices on this board will be sadly missed.  RIP

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.