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6 weeks post op

gramma512
Posts: 4
Joined: Mar 2011

I went to the ER December 16, 2010 in extreme pain, throwing up, expecting to be told I had a kidney stone. Instead, I was told I had a baseball sized cancer tumor in my right kidney that had probably been growing for 4 years or longer. The next morning I found myself talking to a urologist about surgery. Because I live in a very rural area, he recommended a larger hospital 5 hours away where, if possible, laparoscopic surgery might be an option. Due to the size and location of my tumor, he wasn't willing to attempt it at our small hospital. It took a bit to get scheduled, but I finally did have it removed laparoscopically on February 16, 2011. I spent 4 days in the hospital and the remainder of a month at home. I returned to work, part time, last week - just four hours a day. This week, I increased that to six hours a day. I cannot believe how tired I still am. I have a desk job and my boss is great, even willing to let me take a nap if I need it - but I haven't done that. She even brought a treadmill downstairs from her husband's bedroom, encouraging me to walk if I need to...but I feel funny about doing that, too, so I haven't. I really don't know what to do to help myself. Sounds stupid, but my midsection doesn't feel like it's part of my body. It feels like it's been implanted with a giant nerf ball! The incisions are still very sensitive and I still have a couple of spots that don't want to close up. I only had inner stitches, no outer. Once the plastic bandages wore off, there was nothing to keep those 2 spots from gapping open. I keep them cleaned out with peroxide and put neosporin and bandaids on them every day, but it seems like they'll never heal. I can finally lay flat and lay on my sides, but sleeping is still difficult. It's still painful to roll over in bed. And while I'm constantly tired, have very low energy, I find I have trouble falling asleep and staying asleep. I have moments when I just start crying and can't explain why, because I don't even know. I can't put it into words to help my husband understand me because I don't understand it myself. Is this normal? The doctors just gave me the impression that while it was going to be major surgery, I'd be able to go back to work in a month with no dietary restrictions and just have follow up visits with xrays and blood work for 5 years. I feel bad even telling people I've had cancer because getting rid of it was so simple compared to so many people. I'm thankful, don't get me wrong, but I'm also embarrassed to talk about it. If they've not been through this, how can they possibly understand the emotional roller coaster it is? I've never had problems with anxiety or depression. I have a strong faith in God, love my husband & kids, and love my job. But I can't seem to get excited about going back to work and haven't even gone to church once since surgery. I don't want people at church asking me how I'm doing and treating me like I might break. Yet, at the same time, I can't be my normal self either. I can't even wear pants yet. I'm wearing pajama pants to work. Thank God I have a great boss and a very relaxed work environment. I have a strong support group and I know I'm very blessed, so why can't I seem to kick back into gear? If I could, I would just curl up in a little ball and not come out at all.

jgrove
Posts: 5
Joined: Mar 2011

Very normal.

Had the same question as to why I would cry each time I would tell someone I had a Kidney removed as a result of having Kidney Cancer.

I went to a support group meeting, where each person or care giver would explain their current condition. I couldn't even begin to explain without crying. Had meetings with two seperate Doctors, each one commented that the main reason for crying, was fear of cancer.

Went to another cancer symposium, small group.The others in the group had the same problem. The Doctor there explained that when one thinks of Cancer it is equated with death, which is not the case. "We all are going to die." Not necessarily of Cancer. Treatment allows one to manage the desease. You will eventually overcome the emotions.

Good Luck,
Jim

Cafewoman53's picture
Cafewoman53
Posts: 735
Joined: Jul 2010

Just because you had your kidney removed laparscocpicly it is still a big shock to your system. Your whole body has to change to accommidate the loss of an organ. You will feel better as time goes on. I would try to find a support group in your area if you can , talking to people who have gone thru or are going thru the same situation can help you know that they understand what you are feeling. I am going to a support group meeting in a couple days even though I think I am handling everything fairly well , I feel it can't hurt !
Everything you are describing is normal ,I think the Drs don't really help much in the mental healing but it would be a good idea to mention it at your next visit. Take stock of the good things in your life and make sure you get enough rest . Good Luck !
Colleen

VeryAnxious
Posts: 67
Joined: Sep 2010

It is so soon. Of course, you are not your old self yet. It will take some time and yes, when we hear cancer, we equate it to a death sentence. Just take care of yourself. I did not have my whole kidney removed, only the tumor and it took me aboaut 21/2 months to feel completely better. I went robotically. Good luck to you. When you are tired just rest, It is your body telling you you need it.

gramma512
Posts: 4
Joined: Mar 2011

Thank you both. Neither my local doctor or the doctor(s) who performed the surgery mentioned anything about the emotional aspect of this. I wasn't prepared at all. It's good to know I'm not alone. I seriously doubt I'll find any kind of support group in this area, but will check. Just finding this website has been a relief. I did call my doctor's office this morning with some questions and learned from his nurse that I should not be using neosporin on the places that I felt weren't healing correctly. I didn't know that using it on surgical wounds can cause bacterial infections! That would have been some good information to know ahead of time. At any rate, she also told me that she realizes the doctor will tell patients that you'll be back to normal in a few weeks, but she said it's more like three months. Between that phone call and your comments, I feel much better now. I thought I was going crazy! Thanks for your responses.
Renee

jgrove
Posts: 5
Joined: Mar 2011

Another site with fellow Kidney Cancer survivors:

- Kidney-Onc web page at http://cancerguide.org/kofaq/

You should get better each day.

Jim

donna_lee's picture
donna_lee
Posts: 415
Joined: Feb 2009

Somehow, what I wrote yesterday didn't make it onto the board. Guess I'll try again.
Briefly -2006, Radical right nephrectomy with mets to left lobe of liver and set of nodes; all removed, including defective gall bladder. 65 staples from 2" below navel to above lower part of bra line in right side. 2007-recurrence in single node, open the same incision for about 8", close with disolving sutures. 2008-recurrence in low abdomen in single node, more cutting from 2" above navel to my hysterectomy bikini incision, close with staples, then tape.
So far, nearly 3 years, no evidence of disease. I never say I'm cured or in remission.
What you are experiencing is your new normal-at THIS POINT in your life.

On surgery 3, I had a couple of spots that didn't quite seal together and oozed for a couple of months. Surgeon was not too concerned, and what you are doing is fine. Some docs don't like neosporin because you can develop a resistance to it's effectiveness. Try Polysporin and surgitape closures.

Sensitivity and pain issues are not just on the outside. They had to moooooove stuff around on the inside, inflate your abdomen, and put instruments inside. You're entitled to have some pain still. If you can work with jammy pants on, go for it. My first couple of weeks were experienced in long,loose dresses. I had been to the middle east a number of times and had several "maids dresses" that I used for night gowns. (Kind of like a caftan). Over a knit cami and bikini unds, it was fine. I developed pancreatitis at week 3 after surgery #1, which set me back to the beginning. Hardly ate, extreme fatigue, rested during the day, and had trouble falling into a good sleep at night.

Nights can be a bug-a-boo. Thoughts race, thinking of the "what ifs"..., imagining life as it could be in the future.
Crying unexpectedly is not a shame. You have been thru major surgery, are left with the knowledge that you have had cancer, that there is no "cure" except surgery and the hope they got it all.

Don't worry about church or what people might think. Your relationship in faith is with a source more powerful than you. My key word thru all of this is entertaining the possibility of HOPE...for the future, for being able to watch my grands grow up, for being with my spouse, for enjoying my life and friends, my job, cultivating flowers. Now here's an odd one-I enjoy pulling up weeds. Each one is a cancer on my garden and psychologically, I take pleasure in removing it from the earth.

You are on the right track trying to find a cancer survivors support group. Keep trying until you find one that meets your needs. I participate in one every Monday morning from 9-11. Events have caused me to be one of the co-facilitators, along with one of the founders of a not-for profit hospice group, and a retiree who at one time had entered the priesthood.
We don't have many rules: but politics and religion are not allowed, altho current events and sprirituality are acceptable. We don't discuss members outside of the group. I think the next thing we need to announce is "put your cell phones on vibrate, please."
Every time a new person comes to the meeting, everyone is asked to introduce him or herself and tell what kind of cancer, when it was Dx'd, how it was found, the treatment and where they are now. If the new person wants to talk at that time, they are asked, but not required to say anything. Or if they are full of questions, people will try to answer them. Gals just d'xd with breast cancer find others who have been thru treatment, what the side effects of radiation or chemo can be, how to contact Reach to Recovery, etc. But we all share and learn from what the others are going thru. Some people are more reserved, and others feel they can let their emotions out for others to see. I had been on an antidepressant since 1993, but my internist changed to another type, which did not work. One morning someone asked how I was, and with a stiff upper lip, started to cry. It took seeing a psychologist and returning to the internist more than once to get back to the antidepressant that worked.

After I had met with the psychologist for 2-3 times and we had discussed a number of things, she helped me see that my personality type was one who likes to "be in control". I've been a teacher, am now a business owner, like to be organized, plan things thru to the details...and all of a sudden I had no control. I didn't t know if the next set of tests would reveal another recurrence. Not being able to control what was happening to myself was the true stressor. It took the drugs doing their magic and some personal introspection to get there, but things are finally looking good.

As a side note, just about everyone in the cancer group is on some type of anti-depressant, and some are on mild sleep aids. Do not hesitate to talk to your internist about these issues. The surgeon won't help you; he's done his job. Your internist will be responsible for keeping the rest of you healthy. And if you need blood pressure meds, take them.

Boy, this was a lot longer than I typed yesterday. But hope it helps. You are NORMAL and what you are going thru physically and emotionally is part of the healing process. Hang in there. And if you want to communicate thru email, don't hesitate to say so. And I'll try to figure out how to do it thru the board sources.
donna_lee 68 and 4 grandkids

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

The docs nurse was right. People do like to say you'll be back to normal in a few weeks. I've had many surgeries, and other than the hysterectomy, they all took MONTHS to recover from.

6-weeks post-op, you should also keep in mind that there is such a thing as post-surgical depression. It can put you in tears, not right after surgery, but a few weeks after surgery. As in, out of nowhere, just sitting at a red light, for example, you start to cry. It takes a while to wash all the anesthesia and pain meds completely out of your system. Your body is off kilter. It does get better; it did for me anyway.

And I'd definitely keep visiting with the docs if the physical healing continues to be a problem.

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

First, I'm glad they found it and removed it! RCC is such a sneaky disease! That being said, having some depression after the surgery is very normal. Having a barn-burner of a cry is also healthy. I also think that a certain amount of fear is also normal - is it gone? Will it come back? Nothing is as it was - it is for everyone else around you but not for you. You're only what - 6-7 months out from the surgery? Give yourself a break. Your entire system is learning how to function with the loss of a major organ! My urologist told me that it would be a year before my energy level returned to anything near what I'd had before the surgery and he also mentioned the psychological issues. You NEED to talk about what's happened to you - get it out of your brain and into the daylight. There is absolutely nothing to be embarrassed about! Try calling the hospital near you to see if there are any cancer support groups (doesn't need to be just RCC).

Good luck to you - you sound like a strong person and that is a great asset.

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