February 24, 2011 at 4:49 am #47561joolz822MemberchezWright@aol.com wrote:As others have said, everyone is different in the way they deal with the diagnosis. I’m the type that likes to talk and likes to be asked about it although not dwell on it. A friend, though, does not want to mention the C word or have people ask her or talk about it. She thinks that will define her. I have noticed that people seem to look at me trying to assess my current status as though I have a big scarlet C stamped on my forehead, but that’s okay because I really know they care. I’m sure your friend will lead the way in letting you know how to deal with him.
But her CC does define her at this point. It sounds as if she’s terribly afraid and so denying what is happening to her. On the other hand, I get the best chair in the house when I’m at friends houses. *g*February 24, 2011 at 12:31 am #47559chezwrightaol-comParticipant
I hope this isn’t out of line, but I am curious why a whipple if the tumor is contained and the doctor thinks no lymph node involvement nor involvement of the pancreas. A whipple is such an invasive surgery. Would a liver resection do? (Also invasive and a bit of a recovery period from first hand experience.) I guess different doctors do things differently, but it sounds like your friend is at the same stage I was. I had 2/3 of the liver removed, gallbladder and reconstruction of bile ducts, but not a whipple. This was done at Johns Hopkins.
As others have said, everyone is different in the way they deal with the diagnosis. I’m the type that likes to talk and likes to be asked about it although not dwell on it. A friend, though, does not want to mention the C word or have people ask her or talk about it. She thinks that will define her. I have noticed that people seem to look at me trying to assess my current status as though I have a big scarlet C stamped on my forehead, but that’s okay because I really know they care. I’m sure your friend will lead the way in letting you know how to deal with him.
Wishing him all the best and a speedy recovery..sounds like he’s in the best possible position for an otherwise scary diagnosis.
Good luck to him..
KathyFebruary 21, 2011 at 10:48 pm #47558hollandgMember
That’s good news – your friend is eligible for surgery and the operation will take place now – no waiting about, and for the moment no adjuvant chemotherapy is on the cards. There is a lot to be thankful for in that prognosis.
Come back and tell us how the operation goes.
Good luck……….GerryFebruary 21, 2011 at 6:00 pm #47557nancy246Participant
Glad your friend is getting the whipple right away – no waiting. We will be cheering him on all the way! Sound like Gerry (above) is doing very wll after
Whipple sugery. That’s what we like to hear. Take care.
Nancy JFebruary 21, 2011 at 7:50 am #47556sdasMember
Thank you all for your warmth – Gerry, Marion, Cathy, Gavin, Ron, Malc, Penny and everyone else. Your advice is indeed very helpful. It is difficult to be cheerful, but my friend is really taking it well. In fact his demeanor has been amazing. As you have suggested, Penny, Cathy & Gerry, Nancy, I will try to be more of a listener. I don’t offer sympathy to him as I know he would not like it. My friend wants to talk about this ugly disease, but his wife (she’s quite delicate) gets so gloomy when the subject is broached that it is rather difficult to balance the conversation.
Malc, thanks for the offer of contacting another person, but as my friend’s prognosis is highly encouraging (see below), I’d rather he not hear about the gloomier possibility. Perhaps later….
Here is some really good news from my end:
Earlier this month, at MSK, my friend did not have to undergo the formal TNM staging process. (It is my understanding that at MSK, they do not use the TNM process anyway for staging.) But based on his CT scan, the surgeon was quite certain that the carcinoma has not metastasized yet (M0), that the lymph nodes are unaffected (N0) and that his pancreas is intact.
I’m not trained in medical sciences at all but I read through some literature. I am guessing that is possibly a early stage tumor (between T0 [in situ] and T2). Therefore my friend’s carcinoma is in only about stage-1 and fully curable! I really really hope that I am right.
The surgeon’s also said that my friend would probably not even need adjuvant chemotherapy/radiation therapy after the Whipple.
At this point, we have reason to speculate that my friend will enjoy a quite normal life after all, after this ordeal. Of course things will become clearer after his Whipple, scheduled later this week. Only time will tell, but there is a lot of hope for us.
I will keep you posted. Meanwhile, my thoughts are with you all.
SDasFebruary 9, 2011 at 10:45 pm #47555lainyParticipant
Hello Katja’s dad and welcome to our family. Your daughter has done a tremendous job here. I am so very glad to hear of your progress. Keep it going!
Now that you made the plunge so to speak, don’t be a stranger to us.February 9, 2011 at 9:48 pm #47554marionsModerator
We know Katja very well. How nice it is for you to introduce yourself to us also. Have fun at the upcoming AMMF fundraiser. It is such a noble event. Hopefully you will meet up with some of the other members from our site.
Your grandson will love it especially when looking at the pictures a few years from now.
All my best wishes,
MarionFebruary 9, 2011 at 9:34 pm #47553malc2073Participant
Thank you – the site has been invaluable especially for my daughter ‘Katja’ who translates the positives on here for us all.
Yes indeed that was the advice that I remember so well – grab a cushion and “love your cut”.
Recovered? Well I am just about to take part in some fundraising activities for AMMF here in UK. Going up a famous hike in Yorkshire – and taking said grandson along although at 9months he doesn’t know it yet. Certainly feel recovered from the whipple – back swimming regularly. CC different of course – scan at the end of the month.February 9, 2011 at 9:24 pm #47552gavinModerator
Welcome to the site, and thank you very much for sharing your experiences with your whipple op at Leeds, I know that your experiences will be useful to many of our members here. We have quite a few members here in the UK, and I am in Scotland and my dad was treated at Ninewells here in Dundee with PDT.
I hope that you will keep coming back here and sharing with everyone and I do look forward to reading more of your posts.
GavinFebruary 9, 2011 at 9:17 pm #47551marionsModerator
Hello Malc….and welcome to our site. Thank you for sharing your experience. The pain caused by coughing and sneezing can be somewhat eliminated by holding a pillow closed to the abdomen. How are you doing now? Do you feel that you have recovered? And, congratulations on the birth of your grandson; the best present yet.
All my best wishes,
MarionFebruary 9, 2011 at 9:00 pm #47550malc2073Participant
I had a whipple op at Leeds UK in Jan 2010 following cc diagnosis after jaundice. What do I remember? All the medical things certainly but oh my goodness does it not half hurt if you have to sneeze or cough! I remember thinking perhaps I had had my last meal of fish and chips – I hadn’t or that I wouldn’ see my yet to be born first grandson – I have.
The effects of diagnosis can be more difficult for friends like you or blood relatives often than the patient who has to go with medical experts.
If your friend would like direct contact with a whipple graduate in the future just ask.
MalcFebruary 9, 2011 at 2:23 pm #47549ronidinkesMember
my mother had the whipple at johns hopkins with dr. richard schulick. although a very meticulous and challanging surgery she also had a portal vein recontruction. recovery was slow, but she is doing well, and starts chemo and radiation today. sending love, thoughts and prayers to you.
email@example.comFebruary 9, 2011 at 3:28 am #47548cathy_aParticipant
I think you have great advice on how to help your friend. I personally have been touched by the out pour of friends who have expressed their prayers and help in any way. I have been blessed with the friends who have come from my past and present to offer rides, care, food, errands and even help me at work. I am touched and blessed every day.
Someone with any disease either clams up or wants to talk about it. (I am a talker) It is something that I think about 7/24 every minute of every day. Having cc will change your life forever. (and you hope the forever is a very long time! lol) Open the door with your friend, start asking questions and see where it goes. You are a good friend and whether he wants to talk or not, do not give up.February 9, 2011 at 12:04 am #47543peonyMember
Hi SDAS, regarding your question about how to approach your friend I can only tell you that my husbands friends have reached out to us offering whatever help and support they can. The outpouring of support has meant the world to both of us. His friends, many who I don’t know, have provided me with their contact information offering to change a lightbulb if I need it done! So…I would let your friend know right off the bat that you are there for him in whatever capacity he needs. To run errands, provide rides and just listen. I think that’s all one needs to hear, is that they can count on their friends in times of need.
Good luck and best wishes for your and your friend.
PennyFebruary 8, 2011 at 10:47 pm #47541nur1954Participant
Dear Sdas – All I can add is to take things one day at a time. Wait and see if your friend is a candidate for Whipple….and if yes, then help research the procedure so that you are well informed. I’m not sure from your message whether you will be the support person for your friend. If so, attend doctor’s visits and take notes (lots of them). Help track things for your friend (such as dates of visits, procedures, medications, etc.). This can be overwhelming to the patient. Help with all the little chores. Ask questions — definitely — about how he is feeling, what he is feeling, fears, etc. , but also know when to be quiet and just be there and watch a movie or listen to music. This is the tricky part. Knowing when to talk about the illness and when to be quiet. My son’s biggest gripe with some of his friends was that they would walk in and just start talking as if nothing was wrong. One of his good friends was a priest. He knew just what to do: he would come in, ask John how he was feeling, what his latest treatment was, whether he was scared….and John would answer. Then, he would change the subject to something like: have you read any good books lately, or – what are you doing with your time – or – he would bring up a good movie he had watched and tell John all about it. He would then spend time talking about himself, to distract John from everything. He was wonderful. He could write a book on how to deal with “CC” patients.
This may all be overwhelming for you right now. But, I am sure, you are a wonderful friend and everything you do will be appreciated. One other suggestion: don’t ask, “what can I do”…just do what you see needs to be done. I hope all this helps and makes sense.
Hugs – Nancy
- You must be logged in to reply to this topic.