ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: NancyMc on November 09, 2008, 10:29:15 am
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I am wondering what sort of assistance I will need to recruit before I go in for surgery to help me through the six-week recovery. I live alone in the woods of New Hampshire.
(Seeing Dr. McKenna at MEEI in Boston tomorrow. Watch and wait for seven years. Found out on Wednesday that the tumor has doubled in size.)
Thank you.
Nancy
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Nancy -
as Cheri said, everyone's recovery is different so a lot depends on the issues you have post op and the rate of your recovery. But IMO you need someone with you for at least the first week or two. I don't think you necessarily need someone holding your hand 24/7, but you will need help.
You will have limitations post op - can't bend at the waist (they don't want your head lower than your knees), can't pick up heavy objects (I think the weight limit is 10 or 15 pounds), can't drive for a time, can't walk up long flights of stairs - and in addition the fatigue will be tremendous.
My mom moved in with me for 6 or 7 weeks and it was a blessing to have her. She did everything from cooking and cleaning to driving me to work when I returned. I couldn't have survived my recovery without her - but I also have two children who were 11 at the time, so a large part of her responsibility was taking care of them (mostly getting them to appointments, feeding them, etc).
If I didn't have the kids, I don't think my mom would have had to stay with me so long. Even if you just have someone come in to make your meals and take you to your doctor's appointment(s) post op, it would definitely be to your advantage. Although you'll feel better and stronger each day after your surgery, you don't want to overdo it. It might be a good idea to arrange for help for the first 3 or 4 weeks post op and if you find you're doing well enough after 1 or 2 you can always alter your arrangement.
Jan
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Hi Nancy,
I had radiation, not surgery, so I don't have a direct answer to your question, although as you can tell, the first month of recovery after surgery is more demanding.
I noticed in another post that you said you were considering radiation all along, but have now discovered you have a cystic component in your AN. Like you, I have the impression that cystic tumors can be problematic if treated with radiation. Did you find some specific recommendations on that? I am also curious about what sort of cyst they see on your AN, and how do you know if the cyst is big enough to be a problem. Has a radiation oncologist seen the latest MRI?
I realize I am branching off on another subject, so just ignore me if you want to. I'm just naturally nosy. :)
Steve
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Oh, boy, I can't remember exactly where I read about cystic ANs. I read it after Dr. McKenna's secretary told me my tumor had grown but before I actually read the radiologist's report that told me there are small cystic spaces in the tumor. The article said that radiation would cause swelling of the cystic portion of the tumor, and since my tumor looks much larger than it did last year, I don't want to take unnecessary risks toward a bad outcome.
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Nancy,
It sounds to me like the same sense I have: I have read it somewhere, but not sure where. I think a lot would depend on how big the cysts were, and the size of the AN overall. It might be worth it to get an opinion on that from an oncologist who does radiation on ANs. Maybe you can show the MRI to someone at Johns Hopkins? It may be the case that it is only a problem for large cysts, or ones that occupy a large percent of the tumor, or something like that. 19 mm is not that large for an AN, so the risks from swelling may not be much in your particular case.
I think I would check it out. I can't say how much of a factor it was for me, but the easier recovery process of radiation was certainly a factor in my own decision, since I live alone as well. Although I do live in a city, not out in the woods. :)
Steve
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Nancy,
If you do plan to recover alone (I know I could not have done this without help) a suggestion here on food. One month before my surgery I doubled our dinner recipes and froze the other half so my hubby (who can't cook, okay he can make boxed macaroni and cheese--yuk!) didn't have to fret about that and we didn't starve.
A grocery store that will deliver food as needed might be helpful.
Walking around using a walker probably would come in handy for you. I used my husband's arm or he just ran and got it for me.
Bathroom stuff, well the first 2 weeks we shared the shower--he liked it, I cried the whole time as it humiliated me that I couldn't do it myself without falling over. Baths are probably safer for you if you choose to do it alone.
Ask a neighbor or friend to look in on you everyday to make sure all is well (give them a key so you don't have to get up).
Tell your family/friends/neighbors you probably won't be getting up to answer the phone much the first week.
I just remember the very first week recovering at my son's house I was unable to anything. Too weak, too fatigued and too drugged up for the headaches. The second week my hubby had me outside walking me like a dog and also making me do my exercises every hour in the house to help regain my balance. I was still fatigued especially after my walks and vestibular exercises. It took me 20-30 minutes to recoup. So the second week I spent recouping from physical therapy!
We all heal differently and you may not have much difficulty at all, but best to be prepared.
If you really really must be alone during this time, I'm sure it can be done, but I would plan and prepare that it will be difficult. Hopefully it won't though.
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Thanks!
Walking around in NH in winter might prove impossible. We had ten feet of snow last year.
Steve,
Perhaps I will ask for another CD of my latest images to be sent to Rigamonti at JHU FSR facility. I tried to make a copy myself but was unable to do so.
If I choose surgery, I'll just have to call in all my favors!
Nancy
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Hi Nancy,
Yep, enlist those friends and neighbors! Maybe a local church can take you on as their "special project". ;) :D Hey, you never know. Maybe you can sign up for Meals on Wheels for a few weeks. If they have that in your corner of the woods. Just a thought.
Good luck with your surgery. We wish you all the best.
Sue in Vancouver, USA
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Nancy, where in NH are you located. I'm from Manchester and had my operation retrosigmoid on Aug 6th at DHMC in Lebanon, NH. I had Dr. Kadir Erkmen, he was wonderful. To answer your question, I also live alone and my daughter from Arizona came and spent 2 weeks with me then my other daughter from NY came for the third week. After that I was alone, but had many friends check in on me. One suggestion I have, get yourself a seat for the shower. That helped me tremendously. Make sure you take all scattered rugs away so you don't trip on them. I also used a walker for several weeks.
I'm going to DHMC tomorrow for my 3 mos. MRI>>>>>>Let us know if we can help you!!
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You guys are the best!
I'm in Holderness (Lakes Region) but was in Brookline, MA when diagnosed so continued to be followed by McKenna at MEEI.
I'm sure my friends will all rally to the task (they love it here anyway). My daughter just graduated from college and moved to Chicago, so I couldn't ask her to stop looking for a job now. My son is in university in Edinburgh way across the sea. My 89-year old mother is up the road a few miles, but she has her own needs that I will not be able to fill for my recovery period.
I'm sure all will be fine. I just was trying to be energy independent this winter and heat entirely with wood, but that requires going downstairs to the furnace and hauling heavy logs in from outside, so . . . But my new PV solar panels are generating much of my power needs, so I can comfort myself with that thought.
I'm just hoping to be able to garden, row, kayak, swim, and hike next summer if I have to give up a winter of cross country skiing.
More info tomorrow when I have my consultation with Dr. McKenna.
Thank you.
Nancy
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Hi Nancy-I am from N.H. as well & had my surgery at dartmouth hitchcock in lebannon.
Holderness is a beautiful area.
I am from a tiny town called Newmarket next to U.N.H
My mom stayed w/ me for a weeek after surgery & still drives me alot of places as my balance is not all there yet.
Good luck w/ your doc. visit .Welcome & keep us posted.
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Nancy -
I should have been more specific on my "stairs" comment. My doc said it was okay to go up a long flight of stairs post op, but he recommended that once I got to the top I stay there for a while. I found that this was a great suggestion on his part. Climbing the stairs was very tiring for me the first few weeks post op and walking down them was a little surreal for that same time period; thank God for the railing :)
I didn't have an issue with showering by myself, which was a good thing since neither my mom nor my children were likely to come in there with me :o :D My first shower found me a little wobbly, but I just took it slow - a bench is a great idea. The biggest problem I had with my first post op shower was when I went to wash my hair and shampoo got into my eyes. My natural reflex was to close my eyes, which was a huge no-no because when I did it brought on incredible dizziness and balance problems - might want to stock up on the baby shampoo.
BTW, what kind of job is your daughter looking for? I'm currently trying to hire another accountant.
Jan
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Hi Nancy, I'm four weeks post-op tomorrow and doing great. I could not have managed being home without assistance for about the first week. After that, it wasn't so bad. I was sent home three days after surgery. I slept the entire first day I got home and made it around the house including stairs the second day. I used a cane for a couple of days and had a handicapped bench for the shower plus a walker outside of the shower for steadiness. My husband had to help me with my first two showers. After that, I was ok on my own. I had meals prepared for me for about a week or 10 days. Food didn't really taste good, and I have had some jaw problems. Having easy-to-eat foods already prepared and frozen may be a good idea. Another thing I had ready were numerous pairs of lounge pants, loose sports bras, and comfy tops. I couldn't hear my phone (SSD) or the doorbell. We had to turn up the phones and attach a doorbell extension in another room. We also hooked up an extra speaker on the surround sound as I could not hear the TV well. You can't lift the wood, Nancy. We have a wood burner. I could not fill it till my 3rd week out. The wood will be too heavy for you.
Would the hospital allow you to go home alone? Mine would not. If you have microsurgery, stitches will need to be removed about a week after surgery.
I have been humbled by all the help and support that has been offered to me and my family. I hope that you are as fortunate with the helping hands. Best wishes to you. I know you will do great. SUE
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Hi Nancy.
Sounds like you've gotten some great suggestions! I agree with the shower bench (which is pretty cheap at a local pharmacy) and baby shampoo for the shower. I might add that I got one of those hand held shower things so I had a little more control over where the water was going and I didn't have to move my head around too much.
I had my husband at home with me for the first two weeks (I'm not sure if that counts as help or not...he tries, but he's messy and I'm a neat freak...). After that, I was home with my two little ones (age 4 and 10 months at the time) and I did okay with some slight modifications. I'd make sure whatever I needed for the day was downstairs with me so I wouldn't have to go up and down a lot. I had frozen some meals ahead of time so I didn't have to cook and we didn't have to starve.
You just have to learn to pace yourself a bit and gradually you'll get back to normal. Well, almost normal.
I'm sure you can have some friends or neighbors help you out by checking in on you every now and then, picking up things at the grocery store or running some errands until you feel up to it.
Cross country skiing may not be a good idea this winter, but I'm sure you'll be back to gardening by the time the snow melts. Which is, what....July up there? I lived in Upstate NY for 10 years, I'm allowed to say that!
Stay warm, stock up on some hot chocolate and some DVD's and let your body get some rest after your surgery!
Good luck!
Lori
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Great stuff! I will store this up to refer to just before surgery.
They're going in translab as my hearing test was negative (for hearing!). I liked the reduced headaches, lower incidence of CSF leak, etc.
Meeting with Barker on Monday as they are booking months in advance.
Planning an exotic vacation in January or February in case the outcome diminishes capacities.
Thank you all for your great advice.
Gotta get another log on the fire; it's cold up here. :D
Nancy
Jan,
She's a paleontologist, if you can believe that! She's volunteering at a natural history museum (a small one north of city near lake) at the moment and looking at book stores, independent movie theaters, university libraries, etc. Wicked detail oriented, does all my organizational stuff when she visits, too smart for her own good. She was offered a great job at U Ill Chicago writing grant applications but decided it would be too boring. She loves fine motor work, preparing fossils, dissecting, illustrating geological and biological objects, great writer, did lots of research assisting in college (Vassar and Brown). Her roommate just got a job in a research lab at U Chicago. If you hear or know of anything out there, let me know!!! Getting expensive!!!
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Wow, Nancy!
I have no idea what the job market is for paleontologists these days. Sounds like a very interesting profession.
I'm getting a lot of responses for my accountant job though :)
Jan
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Lori,
What's a nerve jump? And why was it indicated.
Yeah, we had snow in April last year. Ten feet of the stuff for the season.
Jan,
Good luck with your employee search. You must not be prone to headaches if you're an accountant. ;)
Nancy
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No, no AN headaches here - only regular, garden-variety ones.
Lori had a 7/12 jump surgery which involves the facial nerves. I'll let her explain it since it was her surgery - and since she's the nurse.
Love ya, Lori ;)
Jan
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Ah, Jan, I trust you to be able to explain it! ;)
Anyway, Nancy, I had the 7-12 jump (medically speaking, a hypoglossal-facial nerve anastamosis) because my facial nerve was damaged by my AN and the manipulation of it to remove the AN during surgery. My AN was quite intimate with my facial nerve, and the only pre-diagnosis symptoms I had, besides a headache, were facial numbness and tingling. We waited 18 months after surgery to see if my facial function would return on it's own, but it didn't.
For the procedure, they take a part of the nerve that goes to your tongue and sortof splice it into your facial nerve to jump start it and make it work again. It will be about 6 months before I see any results, if there are going to be any, which seems like a long wait, but after waiting 18 months, I think I can make it another 6.
Facial nerve problems do not happen to everyone and sometimes if they do occur, they're only temporary, so don't be terrified that it could happen to you. Many people have had AN surgery and had no facial nerve problems at all. Some of us are just unlucky in that respect. But they say translab gives the best view of the facial nerve during the surgery so they are better able to avoid messing with it.
If you need any company on that exotic vacation, let me know... ;D I think I can clear my schedule.
Lori
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I just might need a cohort, so free up January and February!
Ironically, my smile has always been my most valuable asset. But I have been fortunate to have lost all of my hearing in my AN ear, so I am able to select the translab approach selfishly to attempt to avoid facial complications.
We'll see . . .
Thanks, Lori.
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Hey, wait a minute!! Did someone say "vacation cohort??" If so, I'm in! (As she pushes Lori to the side in a pathetic attempt to get to the head of the line...) ;D
Sorry to be jumping in late, but wanted to say "Welcome" I've been off doing other things for a few days and it appears that I've missed lots of stuff here on the forum. Anyway, sorry that you met the membership requirements to be part of this motley crew, but glad you found us. Best of luck as you go through this journey.
Debbi
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Ah, Jan, I trust you to be able to explain it! ;)
Anyway, Nancy, I had the 7-12 jump (medically speaking, a hypoglossal-facial nerve anastamosis)
Able to explain it ???
Hell, I don't think I can even pronounce it! :o
Hypoglossal-facial nerve anastamosis that is - not 7/12 jump :D
Jan
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It's so fun to use the medical term when you go to a new doctor or something - no one has ever heard of half the stuff most of us have had done and they just look at you like you're speaking Greek! I have to entertain myself somehow.
Oh, sure Debbi - chime in when there's talk of a vacation...that's no fair! I guess we'll both have to go keep Nancy company.
And Nancy - nothing selfish about wanting to avoid the facial issues. I don't blame you one bit!
Lori
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I'm a little late to this thread, but I'll go for it anyway.
I live alone, too. I stayed at my folk's house for the first 5 days after I got out of the hospital. When I could finally take a shower, they had a built in bench and handrail which I found very helpful. They live in a multi-level (as I do) and I never had any problems with stairs. Just went very slowly at first. I had either my mom or my brother stay with me for the next 5 days at my house. During that week I started walking outside without having to hold onto anyone.
I always managed my own meds. At first I would write down what I took and at what time so I didn't forget. Food wasn't an issue with me. My taste was affected for about a month and everything tasted like crap, so I really didn't care what I ate.
There was no way that I could have come home without help for a while, but for me, I was on my own by 2 weeks post op. No problems, but lots of calls to make sure I was doing ok.
Cathy
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Nancy,
One thing that my best friend did for me is set up a Care Calendar. You can find out more by going to www.carecalendar.org It was great because people could sign up to bring food. You can also have people to sign up to drive you to appointments, do errands etc. It is a wonderful tool to let everyone know on your e-mail list on how they can help.
Julie
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The care calendar is a great idea! I did forget to mention that my folks, brother or kids DID drive me to appointments, etc. for the first 5 weeks.
Cathy
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Hi Nancy,
I don't have anything more to add really, except to say that you will need help for a little while; there's just no predicting how you will be post-op. I needed lots of help for the first few days, but after that I could have managed on my own. I had no balance issues and got off the loopy drugs quickly but woke up nearly every night in pain. If my husband weren't there I could have probably gotten my own pills, etc., in the middle of the night but that was the toughest part. I say circle the wagons (recruit help from church or wherever) for about 2 weeks, with some folks "on call" for the next week or so. Oh, and don't plan on chopping any wood. Sometimes I'm grateful to be a city girl. :D
Marci