beth-o

julia
i hope things go well for your sisters follow up. Many of us understand what she is going through in our own way. I think it is a process getting back to …something that will help define things for you outside of a disease. Encourage your sister to really think about who she is. A sister, a friend, Mother? Wife? and then the same with work. The next step is to explore what each of these things means. My sister was going through a rough divorce when i was home the first year. I used to say to her, my liver might be lousy but my ears work great. It felt great to help someone else.
I also started attending meetings for a local charity. I did not offer to do much in the begining and often made sure it was somthing I could do if I felt well and skip if I didn’t. Tonight I was voted on to the board of dirrectors! She will find her spot, it just takes time and patience.
thanks for being her support. we all need sisters, cancer or not.

Lainy- sorry to hear the news of no surgery. Has he ever tried Avastin? It is an option to discus with the onc. It has not been studied in cc but it had in renal cell ca and lung ca in a palliative setting and has had some decent reults just keeping things at bay. If he is feeling that good maybe this would just keep him there longer. Worth a try. It is a 10 minute IV every 2 weeks with little side effects….unless he has a history of GI bleed.
Good luck. Glad to hear you are still dancing. There isn’t much better.

Kristin

I had 2 drains going home after some surgery a couple of years ago. I have read through a bit of the other coments you have made to try to visualize the tube. The stitch. I imagine is just holding it in so it wont fall out? If that is the case it must hurt when it pulls, probably something as simple as gravity would be uncomfortable. You could take some silk tape and rip it length wise like a long skinny strip. Use that as the anchor to keep the tube in. Then if there is any pulling it would pull on the tape first (The tape needs to be tighter than the stitch)- the other thing is the leaking. So When you say the drain bag is collecting bile and the tube is leaking I am thinking you are leaking bile around the tube site? So there are a couple of ways to approach this. First you could take the gauze and make a slit so that you could slip it around the tube at the insertion site. Snug it down and tape it tight. If that doesn’t work you could ask for an ostomy bag. What you would do there is take the drain bag you have, place it and the tube inside and then cut the part that attaches to the skin just big enough to go around your tube where it goes into your skin. These work great because they are made to handle getting wet without falling off, they are also made to withstand bile salts and gastric acids without breaking down and finally once you get the hang of it and it is on there good, you only need to change it like every 4 days….giving your skin a rest. That was actually what finally worked for me.
If all else fails or if you can’t get anywhere with the MD ask if you can see the skin care nurse or the ostomy nurse. They do amazing work. You need to stay on it though because having that wet bile on your skin all the time will hurt like heck. It is like acid…well, it is a gastric acid and it feels like it is burning because it is burning you! One other tip on the pain. You could ask for some spray to use here and there esp with dressing changes …I forget the name of it but, it is the spray they use on little kids before they put in an IV. It numbs the skin for a few minutes, long enough to get the dressing back on.

I hope this helps. I know just were you are ….and feeling like you can’t leave the house due to drainage and stink (you didn’t mention the smell but mine smelled awful!) It is hard , but hey your granmother doesn’t mind if you are damp or smelly! She used to bounce you on her knee when you were like that. Find a way to go soak up some of her love. THAT will be the best medicine you can get!
Hang in there, your comrad in arms-
Beth O

2reasons 2 fight. I will be 39 in a couple of weeks. I was diagnosed 11/07. I found out I had cancer the day my son turned 1 yr old and just 3 weeks before my daughter turned 4. Your note took my breathe away.
I truely know your sense of fear. I used to have these moments ,when I would suddenly become overwhelmed by fear for my children. I called them “waves of terror”. They get better. And…almost go away completely.
I had my surgery (liver resection) and had my chemo (gem and cisplatin…the gem is the important part it is the only med that has shown any resonse in our disease…not enough studies) and life slowly got back to our new “normal”.
9/09, just 6 weeks after I finished a mini tri athlon, another shock. It is back, in what is left of my liver. So here we go again.
I think all of the positve stories you hear help. They are filled with hope and love. and that is really all we can do. Fill our selves up with hope and love and believe in it.
One last thing I can’t say loud enough is, be your own advocate. You are already doing that if you found your way here. Remember if a plan does not sound good to you…it is not your plan. Look under every stone to find the one that is.
Oh, and laugh….a lot.
Beth O

Dear Kay-
there are so many beutiful posts I have read. I am glad you landed on this web site. I am a new member and I am overwhelmed by the support here. There are also many answers about the disease too. So, search and ask.
I’d also like to share that after placing both of my grandparents and my father on hopsice and being able to keep them in the place they had called “home” I later had the distinct honor of holding each of them as their spirit left and their body slowly took its last breath. As time has passed I think of it as a final gift I was able to give to them. Helping them to remain comfortable, in control and their dignity intact was a gift to me as well. As a patient, I hope that when the time does come, (my plan is many years from now) that my husband is able to do the same for me.
Welcome and good job.
Many blessings
Beth O

Z-
Good for you. I am glad you got some good news. Who would have thought we’d be so happy to hear we should get more chemotherapy? Who would have theought we’d want it?!? It is strange how life changes. About your surgery, if you are thinking whipple, I have read the best thing you can do, to make sure your surgery statistics are good, is to go to a hospital that does a high volume of them. (A surgeon who does one a week or more)
I have no idea what you have locally but places who have a pancreatic cancer program are places that do many whipples. – just a thought since you were kind enough to share..I thought I would too. keep up the good work!
Beth O