I'm new and nervous...
Comments
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You'll be glad to get itneenee3 said:Well, have my appointment
Well, have my appointment scheduled down at UCLA on Monday. Now I'm starting to have some anxiety about this whole thing. If I choose to have the surgery down there, what will the 3 hour drive home be like after surgery. Thinking about all the things that need to be done around the house before I have surgery. Did anyone bank their own blood before surgery or have a family members do it? Sleep is alluding me once again
You'll be glad to get it over with! _ I waited three months for my surgery- the waiting is the worst! I had a two hour drive home...I made sure I had pain meds in me for the ride. It wasn't as bad as I thought it would be -take a pillow, you will need it ( I used a small pillow a lot to hold over my incision when i coughed, moved around or rode in the car the first trip for the bumps).
I did not bank my open blood but did need two units of blood after surgery -so that is a very valid thought. Stairs are not easy - I think it was going down that hurt more than coming up for me.
You will do fine- just remember to allow yourself time to heal. It really does take time. And eat small meals. Gas and constipation will not be your friends.
Praying for a speedy recovery,
Rae0 -
The ride homerae_rae said:You'll be glad to get it
You'll be glad to get it over with! _ I waited three months for my surgery- the waiting is the worst! I had a two hour drive home...I made sure I had pain meds in me for the ride. It wasn't as bad as I thought it would be -take a pillow, you will need it ( I used a small pillow a lot to hold over my incision when i coughed, moved around or rode in the car the first trip for the bumps).
I did not bank my open blood but did need two units of blood after surgery -so that is a very valid thought. Stairs are not easy - I think it was going down that hurt more than coming up for me.
You will do fine- just remember to allow yourself time to heal. It really does take time. And eat small meals. Gas and constipation will not be your friends.
Praying for a speedy recovery,
Rae
One of the things I do remember is the ride home. While it was only 20 minutes or so I felt every crack and division in the pavement. Make sure you take the ride in a full size car with perfect suspension. My ride was 2 days post surgery. If you can stay a few more days in the hospital or stay locally for a few days it would sure make the 3 hour drive a lot easier.0 -
The anxietyneenee3 said:Well, have my appointment
Well, have my appointment scheduled down at UCLA on Monday. Now I'm starting to have some anxiety about this whole thing. If I choose to have the surgery down there, what will the 3 hour drive home be like after surgery. Thinking about all the things that need to be done around the house before I have surgery. Did anyone bank their own blood before surgery or have a family members do it? Sleep is alluding me once again
I had a lot of anxiety also, but everything seemed to move so quickly that I don't think I had time to process it. My hospital was only 20 minutes away, but I also felt every bump in the road on the way home. Before surgery I tidied up my house, closet, cabinets, etc because I knew people would come over and I didn't want to be embarrassed! I also did an advance health care directive and power of attorney, and gave a copy to each doctor and to the hospital.
I asked about donating my own blood and my surgeon said that 80% of his patients don't need blood, well, I was in the 20%. I needed one unit. So I would say that it can't hurt to bank your own blood if you have time.
Linda0 -
Stairsrae_rae said:You'll be glad to get it
You'll be glad to get it over with! _ I waited three months for my surgery- the waiting is the worst! I had a two hour drive home...I made sure I had pain meds in me for the ride. It wasn't as bad as I thought it would be -take a pillow, you will need it ( I used a small pillow a lot to hold over my incision when i coughed, moved around or rode in the car the first trip for the bumps).
I did not bank my open blood but did need two units of blood after surgery -so that is a very valid thought. Stairs are not easy - I think it was going down that hurt more than coming up for me.
You will do fine- just remember to allow yourself time to heal. It really does take time. And eat small meals. Gas and constipation will not be your friends.
Praying for a speedy recovery,
Rae
I actually didn't have trouble going up or down stairs from the day I got home, so maybe it depends on the person and the location of the incisions, etc. I did have pain when I laughed, coughed, sneezed or cried. The hospital gave me a pillow to hold against my abdomen whenever I had to do any of those things.
And stool softener!!! They started giving it to me in the hospital, and I had no trouble with constipation.
Linda0 -
Hospital foodcarlkcs11 said:HOSPITAL MEALS
I was nauseous the whole first night after surgery. Couldn't even drink water. They gave me medication for this and it worked great. However, the first meal I was brought was some cheesey omlete thing with bacon. No way! I immediately ask for oatmeal and toast and fruit cups. Then all during the day and next evening I had apple sauce. I also drank plenty of water. I did have to frequent the rest room about every 1/2 hour which forced me to get up and move. Also be prepared for the lack of bowel movement for a few days (I ate light,fruit salads and oatmeal and plenty of water) Make sure you have pleanty of water to drink in the house.
The wait for surgery is hard I know. I also had to wait about 3 weeks for a surgery slot, however I used the time to button things up at work and also to increase my exercise. If you keep yourself occupied then the time will go fast. I still have sad thoughts. I guess I am in mouring for my once "normal life". "Why me" "what now" "what could I have done differently" These questions will always be there but as others on this site have told me, we can't let these thoughts control us. It's a choice as to how much control you want to have over the condition you are in. For me, the more control the better. Good luck CARL
I mainly ate the jello and broth, I was nauseous and had no appetite. I had packed a breakfast and my husband brought it to me the day after surgery, and the next day he got me a bagel. I also drank a lot of Dr. Pepper and ate a lot of saltines because they were the only things that settled my stomach, my husband brought those to the hospital too. I had a catheter until right before I was discharged, so I never had to get up to use the restroom. They were loading me up with iv fluids - I came home with 6 extra pounds of fluid.
I agree about control. Right now I am religiously controlling my diet and starting to exercise again. I am also trying not to work too much, and take rest breaks. Those are the only things I can control, and I can't stress out about the things I can't control (although they do invade my brain every now and then!)
Linda0 -
Open vs laparoscopicneenee3 said:I'm just in awe of all the
I'm just in awe of all the support I'm finding here. Thank you all for answering so many of my questions! I'm scheduled for surgery on November 1st here but will change that if I can get into UCLA first. My referral was faxed down there today. They said I should hear from them right away. I've been trying to stay busy which really does seem to help. Got my chest x-rays done, EKG, picked up a copy of all my records, etc. Not sure if I should bank my own blood, need to find out more about that. The doctor here says i'll need to have the open surgery because of the size. What direction do they make the insision? Kinda been on a roller coaster of emotions. I feel so good, it's just so had to believe that something is wrong. When I fall asleep, I wake and keep thinking this is all just a bad dream but it's not, it's real. I'm really blessed to have such a wonderful support group around me, such dear friends and family and all of you! Thank you all once again!!! I'm sure I'll be having more questions
Blessings and best wishes to all of you
When you meet the doctors at UCLA they may have a different opinion on open vs laparoscopic due to experience, equipment, etc. And also partial vs complete removal of the kidney. I believe the incision for an open is horizontal, about 11 inches long, and extends around the side of the body. You lay on your opposite side during the surgery, which is how it was for laparoscopic also. I didn't know that until my post op visit to the surgeon and he told me then. For my laparoscopic surgery I had 6 incisions about one inch long, and a smaller incision for the drain. My incisions are on the left side of my abdomen and are all over the place, from the pelvic area up to my rib cage. They healed very quickly.
Honestly laparoscopic surgery does have a shorter recovery time and less pain, but many people have open surgery and get through it, so if that is what you need remember that you can get a lot of support from others here who have had the same thing.
Let us know how it goes at UCLA, I'll be thinking about you!
Linda0 -
Welcome
And although I'm sorry you've had to join us, I'm glad you found us here. In one way or another, we've all been where you are and being nervous is OK. There is a wealth of information on this site and many many caring people. My journey with RCC started 10 years ago and I didn't find this site until many years later. Keep posting here - and know that we are all here to hold you up when you need us - or just listen when you need to let off some steam.0 -
Hi Neenee3neenee3 said:Overwhelmed with gratitude!
Thank you all so much for all the caring words... it's appreciated more than I can say. I'm full of so many questions. I live in a two story home with all the bedrooms upstairs. How is it to take the stairs after surgery? Might have to stay downstairs on the couch or is a recliner better? I'd really like to be prepared when I get home from surgery. My sweet Mom will be coming to help all the way from Montana. My biggest dilemma right now is figuring out where to have the surgery done. Small town doctor or a place that treats 2,000 kidney cancer patients a year. I have to say the size of my mass worries me. Strange how now that I know it's there I do feel it. Also like to know are there any items I should make sure to take to the hospital? How long is the average stay? I will have more questions to come. I keep drifting off and should take advantage of it since sleep has eluded me. When I do sleep, I keep waking up hoping this is all just a bad dream... Thanks once again for sharing your experience with me. Bless you all, I hope I'll be able to give back in the same way you have done for me
We all know the how scary this is! My RCC was discovered by accident when I was having issues with my bladder. I had radical nephrectomy of right kidney on 8/30/2010. I would suggest that you go to the place that treats the most patients for RCC. Knowledge is so empowering. The open flank surgery is the most difficult to recover from due to the size of the incision and the overall wound. I found it easiest to wear the hospital gowns post op. Be sure to bring slippers. They want you to start walking asap to get things moving again. i was in the hospital for 4 days, but my sister is a nurse and provided so much support. Once home, I didn't move around too much. Getting in and out of bed or a lazy boy is a bit tough at first. But each day is better! Try to walk a little a few times a day. Cook some meals ahead so you can just microwave. Also, a back support (elastic band) that you can buy at the drug store helped me alot - kind of helped to "hold things together". If you are having lots of anxiety, as I did, talk to you doctor. You may be able to take a little anti-anxiety medication to help you rest and get through until surgery. After surgery, when you know the pathology of the tumor, you will feel much better. You might also look for an RCC or survivor support group near you. The kidneycancer.org site is full of information. This website is wonderful as everyone posts their own experiences which is so beneficial. I read so many, but did not post anything for so long. Now, after a year, i feel like I can offer some suggestions.
Good luck and i will keep you in my prayers,0 -
Best medicineneenee3 said:Grandson
Before I even opened my eyes yesterday morning, I heard, "I love you NeeNee" from my 5 yr old grandson. Now if that doesn't make me want to fight this fight this fight nothing will!!! Getting ready to head down to UCLA this morning for my appointment.
Hi neenee3,
Grandkids are just so genuine, innocent, and intuitively compassionate, hugs and kisses from them are absolutely the best reminder of why we fight and darn good medicine. Good luck at UCLA this morning, hopefully you will return much more comfortable with your situation and the decisions that lie ahead. Very soon all of this will be behind you and you can get back to the business of being Granny. As Gramps my motto is "Wind'em up and send'em home" (also known as Grampa's revenge), gotta love it!
My best to you,
Gary0 -
Back from UCLA
I'm back and I think we're going to go down there for surgery. I spoke with the Oncologist and the Surgeon who gave me a 50/50 chance of walking away from the surgery without cancer. Now back home for more tests. The Oncologist would like me to get an MRI of my brain, a CT of my chest an a bone scan. Has anyone else had all these tests done? I should hear about a date for surgery by the end of the week. Not sure how I feel about the 50/50. Back to more waiting....0 -
Covering all the basesneenee3 said:Back from UCLA
I'm back and I think we're going to go down there for surgery. I spoke with the Oncologist and the Surgeon who gave me a 50/50 chance of walking away from the surgery without cancer. Now back home for more tests. The Oncologist would like me to get an MRI of my brain, a CT of my chest an a bone scan. Has anyone else had all these tests done? I should hear about a date for surgery by the end of the week. Not sure how I feel about the 50/50. Back to more waiting....
neenee,
This just confirms that UCLA was he right choice. I believe they are being thorough because of the proximity of the tumor to your liver. RCC "likes" bone, lung, liver, and brain (in no specific order) so anything suspicious will trigger more tests. I had a bone scan because the CT showed lesions on my spine, turned out it was spinal stenosis. Knowledge is power, you will gain a better understanding of what to expect going in. Though you did not choose to be, you are now a warrior, and in this or any battle, the more exposed your enemy is the better! Our thoughts and prayers are with you.
Stay strong,
Gary0 -
You're right!garym said:Covering all the bases
neenee,
This just confirms that UCLA was he right choice. I believe they are being thorough because of the proximity of the tumor to your liver. RCC "likes" bone, lung, liver, and brain (in no specific order) so anything suspicious will trigger more tests. I had a bone scan because the CT showed lesions on my spine, turned out it was spinal stenosis. Knowledge is power, you will gain a better understanding of what to expect going in. Though you did not choose to be, you are now a warrior, and in this or any battle, the more exposed your enemy is the better! Our thoughts and prayers are with you.
Stay strong,
Gary
Knowledge is power. I'm just so nervous to have those tests done... so worried it'll be working off the wrong side of that 50/50 chance. I know I need to stay positive and keep looking at my glass as half full rather then half empty. I can't tell you how much it means to have this forum to go to! I will be a WARRIOR! Thanks so much for the thoughts and prayers!0 -
Odds...neenee3 said:You're right!
Knowledge is power. I'm just so nervous to have those tests done... so worried it'll be working off the wrong side of that 50/50 chance. I know I need to stay positive and keep looking at my glass as half full rather then half empty. I can't tell you how much it means to have this forum to go to! I will be a WARRIOR! Thanks so much for the thoughts and prayers!
What were David's odds? Don't let the numbers mess with your mind, try thinking of it this way...Doctors have a tendency to prepare us for the worst, therefore your worst case odds are 50/50 and the tests will only improve the numbers. Remember, there are many long-term survivors here that had a worse prognosis in the beginning. You cannot control the outcome of the tests, you have a team in place to help you with that when the results are in, worry about it then. You control how you react and how they affect you in the meantime, you can overcome the fear, stay positive!! Now repeat after me...I AM STRONG...I AM A WARRIOR...I AM A SURVIVOR!!
Gary0 -
Waitingneenee3 said:Back from UCLA
I'm back and I think we're going to go down there for surgery. I spoke with the Oncologist and the Surgeon who gave me a 50/50 chance of walking away from the surgery without cancer. Now back home for more tests. The Oncologist would like me to get an MRI of my brain, a CT of my chest an a bone scan. Has anyone else had all these tests done? I should hear about a date for surgery by the end of the week. Not sure how I feel about the 50/50. Back to more waiting....
sucks, doesn't it? But you're on the right track with your doctors. I had a PET scan, bone scan, abdominal ultrasound and brain scan before my initial surgery. My surgeon wanted as much information as possible before he operated. The last thing they want is some little 'surprise'.
As for odds? They're just that - odds - which might work in Vegas but something we don't need to think about here. It's like 'statistics'. Good for research purposes but we're living in the real world. For me the best approach is not to fret about what 'might happen'. Someone once told me the worrying is like paying interest on a loan you don't have yet. Take it one step at a time. Deal with 'what is' - and let 'what might be' alone for now.
Didn't mean to preach - I know from experience how difficult this is.
Take care of you - and let us know how things go.0 -
Pre Op testslbinmsp said:Waiting
sucks, doesn't it? But you're on the right track with your doctors. I had a PET scan, bone scan, abdominal ultrasound and brain scan before my initial surgery. My surgeon wanted as much information as possible before he operated. The last thing they want is some little 'surprise'.
As for odds? They're just that - odds - which might work in Vegas but something we don't need to think about here. It's like 'statistics'. Good for research purposes but we're living in the real world. For me the best approach is not to fret about what 'might happen'. Someone once told me the worrying is like paying interest on a loan you don't have yet. Take it one step at a time. Deal with 'what is' - and let 'what might be' alone for now.
Didn't mean to preach - I know from experience how difficult this is.
Take care of you - and let us know how things go.
I recall a complete physical, EKG, a lot of blood work and chest xray plus a male test for bladder cancer (not fun) before my surgery 9 years ago. Each doctor and hospital may have there own variations of this. The tests serve a number of purposes such as, are you strong enough for the surgery, is there any evidence the cancer spread, and backup data if you need additional blood.0 -
Thanks!garym said:Odds...
What were David's odds? Don't let the numbers mess with your mind, try thinking of it this way...Doctors have a tendency to prepare us for the worst, therefore your worst case odds are 50/50 and the tests will only improve the numbers. Remember, there are many long-term survivors here that had a worse prognosis in the beginning. You cannot control the outcome of the tests, you have a team in place to help you with that when the results are in, worry about it then. You control how you react and how they affect you in the meantime, you can overcome the fear, stay positive!! Now repeat after me...I AM STRONG...I AM A WARRIOR...I AM A SURVIVOR!!
Gary
The day started off tough but got better! Positive thinking is my FRIEND! I AM STRONG... I AM A WARRIOR... I AM A SURVIVOR!! I have FRIENDS!!! 0 -
Worryinglbinmsp said:Waiting
sucks, doesn't it? But you're on the right track with your doctors. I had a PET scan, bone scan, abdominal ultrasound and brain scan before my initial surgery. My surgeon wanted as much information as possible before he operated. The last thing they want is some little 'surprise'.
As for odds? They're just that - odds - which might work in Vegas but something we don't need to think about here. It's like 'statistics'. Good for research purposes but we're living in the real world. For me the best approach is not to fret about what 'might happen'. Someone once told me the worrying is like paying interest on a loan you don't have yet. Take it one step at a time. Deal with 'what is' - and let 'what might be' alone for now.
Didn't mean to preach - I know from experience how difficult this is.
Take care of you - and let us know how things go.
Is exactly how I started this day! Glad it's not ending that way I'm going to try and live in the 'what is' and enjoy it! Thanks for the words of wisdom. They're so appreciated! Am I ever glad I found this forum! 0 -
Wealth of informationams123 said:Open vs laparoscopic
When you meet the doctors at UCLA they may have a different opinion on open vs laparoscopic due to experience, equipment, etc. And also partial vs complete removal of the kidney. I believe the incision for an open is horizontal, about 11 inches long, and extends around the side of the body. You lay on your opposite side during the surgery, which is how it was for laparoscopic also. I didn't know that until my post op visit to the surgeon and he told me then. For my laparoscopic surgery I had 6 incisions about one inch long, and a smaller incision for the drain. My incisions are on the left side of my abdomen and are all over the place, from the pelvic area up to my rib cage. They healed very quickly.
Honestly laparoscopic surgery does have a shorter recovery time and less pain, but many people have open surgery and get through it, so if that is what you need remember that you can get a lot of support from others here who have had the same thing.
Let us know how it goes at UCLA, I'll be thinking about you!
Linda
I'm taking in all this information so I'm ready for surgery. Stool softener right away, walk to help relieve gas, make sure I have a pillow for all the laughing I'll be doing:) Looks like there's still a possibility of having it done laparoscopically even at 8cm is what they told me down at UCLA. I can't believe how much I've learned being here! Thanks so much for taking time to share your info with me Linda! It's invaluable!0 -
Hooray for being a GRANDMA!!!KatfromFlorida said:We have much in common
e Hi NeeNee:
I am now 4 weeks post op after having a partial removal of my 6cm tumor. Finding out about it was also a shock for me, totally unexpected and very very scary. This is not an easy road to travel but your definately in the best place for support and answers. The people here are the best around and trust me I spent quite some time surfing the net before finding this site.
Normally, they cannot tell you anything about your tumor until they go in and fetch it.Usually takes a week or so before they complete the tests on it to determine what type and stage of the demon you have so patients is required. Whatever type of surgery you decide on the recovery is tough, I'm still wading through it with some good days and bad days.... I am 51 and a 1st time grandma and I want to be around for my boy for a long time
Some doc's don't randomly answer questions unless you ask so I would suggest coming up with as many questions up front as you can to help you decide all your options. A few of the threads here give some good ones to add to your list... and you may have many many more after your doctor sees you that you didn't think to ask so this is also the place for that too...... I don't want to say Welcome to the club as its not a club anyone chooses to be a part of but if you need to vent, talk or just question we are all here for you.....
Your in my prayers and much love to you and yours....
My best
Kat
I can't think of a better reason to get better then that! I'm still walking around thinking... is this really happening to ME? Someone that's only been to a hospital to have babies! I take no medications, live a healthy lifestyle, exercise etc. Why.... but here I am and thank goodness I found all of you!!! I hope I can give back to someone else like you've all given to me! Thank you so much!
My prayers and love to you and yours (especially the little one 0
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