Just wondering how you're feeling, I know you were really down the other day. Of course if anyone has a right to be down, you do! However I'm hoping that one of us might have given you something that helped ease things for you a little, or at least headed you in the right direction to get the assistance you need.
I'm just checking in...
Chip up and striaight forward
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
13 years 1 week ago - 1 year 3 months ago#1600by wendy
You gotta keep the big picture in mind, my dear. Not so easy, I know. You certainly deserve to indulge yourself in some bitching and moaning, you have earned it for sure.
There's a saying and it's true: this too, shall pass.
I never had chemo (or bladder cancer for that matter, I'm a breast cancer survivor), but I did some nasty drugs for five years, hormone-suppressing drugs, got launched into instant menopause at 43...that was horrible enough. Never lost my hair but I did gain 60 lbs the first year of treatment, without eating. Awful. I had nerve damage from the mastectomy that made moving excruciating for 2-3 years, that was pretty bad too and many times I wish secretly that I hadn't done the treatments and just rolled over and died instead. But now it's 2 yrs since I finished and 7 yrs since diagnosis. I never thought I'd live this long but now I'm glad I did.
Again, I am not going through chemo but my father is. I learned of my BC 3 weeks after he was told his Ocular cancer had metastisized to his liver. No hope for cure. Knowing that he opted to try chemo in th hope of 2 or three extra months.
I can not compare my situation to yours but I do know what it's like to loose bladder control. Fight UT infections (twice now) and without a doubt wonder if I (or those around me) wouold have been better off If I had just died. I think that is common with anyone fighting. This my sound strange but I look to those that have it worse than me and say to myself... "If they can hang on, I have no right to feel sorry for myself."
Unfortunatly I do not have to look far with the fight my father puts in every day. He was told to go home and enjoy his last days. Perhaps that would be best but he refused and has pursued every opportunity to extend his life. Some say he's just reaching... he says if it brings 30, 60 or 90 days... a lot can happen. Besides, since these are trials, it could help someone else down the road.
Believe in yourself,
RC w/ Neobladder 8/22/06
If you look in tales from the trenches you will find a story under Invasive Bladder Cancer-Bladder Sparing by Cyndi. She had chemo for months in Boston and now in her update she writes she ultimately had to have her bladder removed in May. Her name is Cynthia Kinsella and her EMail address is at the bottom of her post. At the beginning, when I was first diagnosed and was going to go the chemo/radiation route instead of surgery she EMailed me a lot of advise and is such a nice person I am sure she would be able to give you some good advise.
You are in my thoughts and prayers.
I don't have any tips for you not having gone through chemo myself, but I wanted you to know that I'm sorry you're having such a tough time with your treatments. I know there will be those who can give you tips or information about where to look for help, but in addition to that I think if you spoke to your surgeon's nurse or other medical professional in his office who you would have access to about the side effects you're dealing with. They should have information and or medication that will help you, of course they can't get your hair to grow back faster but maybe they know where you can find help with that issue as well. There are people who wear beautiful scarfs that are intricately twisted and folded into a piece of art almost, and some of these same people/places could help you find a wig that worked for you if that was something you wanted to do. The main thing here is you need to ask those people who are giving you treatments and or your doctors where you can get help for these issues, I do hope you'll try this suggestion of mine.
Do know that I have you in my thoughts, and I know others are feeling the same things that I feel and we'll have you in our prayers as well.