New, in treatment, and learning
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Hi Mark, and welcome to the site.
As to the carer question, I admit that I need help. I live on the second floor and there are times I get too weak to make it safely down the stairs. There are also times that I am too tired to cook. My husband has really had to stepup to the plate. Other times, I am feeling so good I forget I have cancer. My worst side effect is diarhea which for me can last several weeks. By the end, I am so dehydrated and malnurished and weak that I need major help, sometimes a hospital stay. However, I dont have this side effect every chemo round, so some months I needhelp, some months I dont.
Hope that helps.
Kris
Hiya Mark!
Welcome!It’s nice to meet you though not so nice given the circumstances.. but don’t worry, everybody here is really nice and helpful whenever you need advice or an ear! Don’t lose hope, you’ll get through this mess an even stronger person then before.
For chemo, I have to take a bus an hour away, and my mother comes with me. I would try to have someone go with you or see if there’s a bus you can take at least so you don’t have to do the driving. Doing things can be especially hard with chemo and you never know what days will be good and bad. Louise had a bunch of great ideas though! This is a trying time for you and you deserve the best care you can get.
Keep us posted, good luck and stay safe! I’ll be thinking of you.
Mark,
When I was introduced to the Cancer Center after diagnosis and in preparation for starting chemo, they recommended having a driver for my apointments. I also started with the Gemzar/Cisplatin combination of chemo. My Cancer center is only about a 10 minute drive from my house, so after the first few visits, I quit having a driver for regular chemo. However, when my blood counts dropped and my legs were weak, I needed a driver. I do not live alone. I have husband and 2 teenage boys. You will need to let people know what you need and when you need it. I had a lot of help available, as I have 3 adult children who live within 1/2 hour of our home and many people from church, neighborhood, and work were willing to do anything we asked. My normal day for chemo was on Mondays, so we often had meals delivered from a ministry in our church for Monday evenings. That was wonderful, because one teenager had scouts each Monday night and my husband had Monday evening commitments as well. When you keep people informed of your condition and your needs, you might be surprised at how many people will offer to help. My kids convinced me to use a facebook account to keep people informed. That way, interested people can find out without worrying about calling you when you are resting or interrupting something important and they will know what help to offer. Cholangiocarcinoma is so unpredictable that no one can tell you what you will need or when you will need it. We have a tendency to feel helpless in the face of the unknown, but reality is that you call the shots. If you want help, ask for it. When help is offered, you have the right to accept or reject any given offer. If your cancer center is holistic in its approach, they may even have lists of resources you can call upon when needs arise.
There are many people on this site who are willing to share there experiences with you. As questions arise, ask and you will have answers.
God bless you!
LouiseHello Mark and welcome to the best little club in the world that no one wishes they have to join! It would not hurt to line up some friends/family in a “just in case” mode. They could take turns daytime to help you out if the need arises.
Don’t forget that some have gone through the chemo fine, everyone is different but be a good Scout and be prepared. It will be one more thing off your mind as well. Lost of good luck to you and please keep us posted.Hi,
My surgeon called it a “classic presentation”. I was unexpectedly hit with unpleasant symptoms of discomfort in abdomen, weight loss, appetite loss, and discolored stool and urine. Within two weeks I had observable jaundice and then went on to get a stent put in while diagnosis proceeded forward.I live near my family and I have been supported very well by them as well as a friend or two. It just seemed to me that a number of people’s stories indicated that they needed more help as time went on. I have certainly found their support both comforting and needed so far.
Thanks, Mark
Hi Mark,
I guess you have many issues to consider. Was this an incidental diagnosis or did you/do you have CC symptoms? If you do choose chemo, I think having folks checking in on you is cruial. I know — as a person who lives alone — how much you feel like you are imposing but it turns out that the people who are a bout you are anxious for something to do to help. They may not be able to cure us, but if they came and hold our hand on a hard day, it means a lot: to your friends and to you. Also many local chapters of ACS do provide some transport help if that is an issue regarding chemo.
Please take good care, and
Courage
-IreneHi,
I go in Monday to talk to my oncologist about the next step. I am still recovering from the surgery attempt at resection but, I believe the idea is to start as soon as possible.
MarkHi Mark,
I am sorry to here that you too have this awful disease, however, you have found the right place. This site has been a wealth of information to me that I wish I had found when I was first diagnosed. As for a caretaker, I am married and have had the support of my husband during this journey. There have been many times that I have not been up to doing much. I think that if you have family or friends that can be there for you it would help. (My personal opinion) I think that I can say that we all have ups and downs. In some ways, I tolerated the chemo regimen I was on better when I was first diagnosed. I was off it for 9 months and am now back on. I am only on 1 (Gemcitabine)of the drugs now because my counts were getting too low and even so I am still having problems with WBC and platelets. I feel pretty worn out but my appetite is better this time. There are days I feel like a “limp noodle” and other days I feel pretty good. I think it would be nice if you had someone to make sure you were getting good meals or nutrition. It’s tough to cook or even make a smoothee when you dont have an appetite and are tired. Bottom line is I think you’ll need to see how you feel and how you tolerate the chemo. Maybe have some family/friends lined up to help if/when you need it. This is just my opinion and others may have other suggestions. Keep us posted on your progress.
Take care and God Bless,
JamieHello Mark. as always, so sorry for the circumstances leading you to our site. But we are so glad that you have found us. In regards to needing a caretaker I believe, that it varies from person to person. The medications given presently have shown to make chemotherapy much better to tolerate then, let’s say, even a few years ago. Of course, having someone available when needed might be something to keep in mind. Other members on this board might be able to share some thoughts with you also. When are you starting with your treatments?
Best wishes coming your way,
MarionHi,
I recently was diagnosed with a Klatskin tumor on the bile duct. I had a surgery to attempt a resection but, the tumor was wrapped around the artery and vein and so they closed me up.
I have been told that next we will be going in the direction of Gemcitabine and Cisplatin and possibly radiation. I expect to get more specifics next Monday.
I have found the info on this site to be very helpful already. I suppose my big question from reading this site is whether I am going to need a caregiver near me all the time as I live alone at the moment.
Thanks,
Mark
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