Can I just take care of myself after double mastectomy?
I hit a wall. My surgery is probably October 19. My family is here but notsuper helpful and I also have a hard time asking for help. When the last one made an excuse as to why she is stressed on how to take care of me, I snapped.
So, my question is this...when you come home from the hospital, can you take care of yourself? If someone comes to take out the trash and scoop and fill my cat litter, can I do mostly everything else myself? I don't want anyone here. They are stressing me out and I don't need any drama.
Thoughts?
Thanks.
Comments
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Hi there. I'm so sorry you have to go through this alone. What kind of surgery are you having?
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yes. Double. I assume I will be in be hospital for a day or so and then home.
My concerns are about taking out trash (I live in a three story walk up) and scooping and filling litter for my cat. And bathing. And feeding myself. But aside from the lifting, maybe I can do the other stuff myself
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Sorry Kahnartist. It will be very difficult but not totally impossible. Could you manage even a couple days with help? Even with a close friend? If you had premade ready and everything at a low level (not in upper cabinets) it would be easier. It might be nice to have help with the shower and even dressing while you have drains in. You would want to make sure you have prescriptions filled ahead if time too. I could not even open a prescription bottle for a few days. Frustrating, but you don't really realize his much your chest muscles are involved in daily movement until you have a surgery like this.
I wonder if your hospital or cancer center could arrange a volunteer to help you out even a little bit the first couple days.
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Kahnartist...are you having reconstruction?
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Dtad,
That is the plan. I meet with ps Monday and then the date will be confirmed.
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Could you maybe have a friend or family member just come over once a day for tasks that will be extra-difficult? I think, if I had prepared a bunch ahead of time with everything on a low shelf, food ready to eat, prescriptions ready, and easy-to-wear clothes (like button-down shirts), the main thing that would have given me trouble in the first two weeks would have been washing my hair. When you have nodes removed it's recommended not to lift your arms above shoulder height for the first two weeks.
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I had a bilateral with no reconstruction and was in hospital for 8 days. I couldn’t open the door handle to get into the toilet by myself and struggled to sit on the toilet and pull up my pants for the first few days. After that I would have been able to manage at home by myself. Not well but possible.
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xxyzed! 8 days?! Holy hell. You are ok now?! Maybe I am naive. I am just finding it hard to ask for help and greatly disappointed when it is offered with conditions. This is hard enough without drama.
Summerangel,
I think that will have to happen in some way. I just wish I had a more caring and reliable squad.
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If the surgery goes well, you can do it yourself, with a few caveats. My experience (full disclosure, husband and son were helpful and so were friends): Self-care, i.e. shower, was fine. Well, I didn't have the experience of washing hair because I'd finished chemo just a few weeks earlier. But if you're doing a bmx with no recon, you should be fine lifting a washcloth up to your head and face, for instance. And my surgeon and the PT I saw in the hospital the day after surgery were encouraging about that. Moving around, dressing, and so forth should be okay. If you're not queasy about such things, care of the surgical drains is actually pretty simple.
The biggest barrier is energy. I did a lot of sitting on the couch; I'd see things that needed doing around the house and just couldn't summon up the energy to get them done. I was very grateful that friends brought in dinner on the nights that DH wasn't there to cook. They didn't stay long, but a 10-minute visit was very heartening.
But for instance, I was making my own morning tea and toast and lunchtime sandwiches. And if I'd not had company, I could easily have made simple suppers or used the microwave. If you do some advance food prep, that might help.
It's doable, but you might be grateful for daily visits, at least for the first week or so. Good luck!
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Hopefully you won't be in the hospital that long. Sorry xxyzed, hope you are recovered well now. Many of us are released the next day. I was out by lunchtime. It will depend on your surgery and response though.
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I had a bilateral mastectomy about a month ago, although no lymph nodes were removed and I had full range of motion of my arms and no pain whatsoever. Maybe it depends on the skill of the surgeon---I dunno. I also can feel my chest and it doesn't feel numb, which is a HUGE plus. I was expecting the whole area to be numb and that's not the case for me. I was able to do everything right away. Anyway, that's my experience.
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I'm in Australia and my surgeon doesn't like to send you home with drains like they do in the US. I'm also a single mum who had recently lost my husband so had no assistance at home. I had no choice but to ask for help and really didn't like doing it. Personally with no kids at home I'd struggle through if I was you. You can do without help that comes with conditions. Just make sure your medication isn't childproof and you have plenty of water and snacks. The hard part is when you have to leave the house for your follow ups.
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Kahnartist, in my opinion, it depends on how you deal with stuff. We are all different. I had a unilateral mastectomy in the morning and came home before lunch, and I was fine. The post-op pain was managed with a couple of pain pills and some ice bags from time to time. I didn't have any issues with drains--they're pretty simple.
If you're generally independent and down-to-earth, you'll be better off by yourself than stressing about unwilling help.
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I had two mastectomies one right after the other and did fine without help. I had to ask a friend to pick up a prescription because I could not drive. Luckily I was in the city and walked to the store to get one or two things each day.
One thing that helped me was getting a regional (paravertebral) block before surgery. This eliminates the need for pain meds after surgery though you really have to be emphatic about this. And makes the first few days easier. I woke up from surgery just about as alert as I had been before it, no nausea, and pain was minimal for those first days.
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I was in the hospital for 3 days, mainly due to node removal. I only had a lumpectomy, but could have coped by myself if my husband and children hadn't been there to help. P.S., I hate drains!
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I think some of the recovery depends on what shape you're in to begin with. If you can plan ahead well, and don't plan on even lifting laundry or trash, you might be ok. And yes, even opening heavy doors can be a challenge at first! I wasn't allowed to shower until the drains came out day 5, but I didn't need help washing or dressing as long as I went slow. And pillows, lots of pillows, because getting up from sitting or lying down can be hard. Help for dishes and cooking wouldn't hurt, but maybe you can rely on take-out
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khanartist, lol funny name btw
I had an easier surgery but I think you can definitely manage. Get things ready now though. Reach will be an issue so look around at things you use and I'd have them at counter/table level (I found it a little tough to reach high for the coffee and low for the dog food) and I'd have some easy meals ready for the 1st few days, whether you make them before or buy frozen. Three things I cannot stress enough, the drains will suck, do your post surgery exercises and you'll get through this! -
There is a large difference in post-op pain between nodes/no-nodes, lumpectomy vs mastectomy, recon vs no recon, and the types of recon as well. If you're having TEs put in, be aware that pain can be pretty bad. I was in great shape, had a paravertebral block before surgery, and have a high pain tolerance, but I still needed narcotic pain relievers for nearly 3 weeks. My PS said my pec muscles were so well-developed (I was a big fan of push ups) that they were very tight. Also, he started fills immediately after surgery. I think that added to the pain. If you're on pain meds you won't be able to drive yourself to post-op appointments, so keep that in mind.
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I agree with the above posts - whether you can handle this depends on a lot of the factors mentioned above. I had a bi-lateral mastectomy, bi-lateral SNB, with placement of tissue expanders and a chemo port. My surgery was late in the day, and I had a paravertebral block as well. I did not have a lot of pain, but did have some anesthesia issues which required anti-nausea meds IV while in the hospital the first night. My block was not removed until late the following day, due to the anesthesiologist's schedule - so I stayed an extra night just to make sure I had good pain control - which I did. I did not require much in the way of pain meds after coming home, Tylenol during the day, Rx pain meds at night, but only for the first week. I came home on a Wed, my husband was off for the remainder of the week, but returned to work on Monday, and he is gone from home for a minimum of 12 hours a day. I was on my own but had no problems, I could bathe, dress, strip four drains, manage my own meds, get my own food and drinks, etc., from the time I got home. Several recommendations - make sure your pharmacy uses non-childproof caps on your meds. As mentioned above, keep things on your kitchen counters so you don't have to reach - even better if you can use disposables, paper plates and plastic ware - no dishes to do. I cooked ahead and stored or froze in single serving portions, easier to lift and maneuver. I would suggest a insulated cup with a lid that unscrews (not a snap on type) and a straw - I knocked mine over at least once, the lid saved me from having to clean up a spill, having a pen and paper to note when you took which meds, or have a pre-printed log - there are several online you can print up. I just slept on the bed, which had a million pillows - didn't use a recliner - and kept phone, tissues, lip balm, hard candies, TV remote, medicines and log, etc. in a basket so everything was in one place. My husband got me a lamp dimmer switch, linked below - saved me from reaching to turn off the bedside lamp, cheap and super useful. I would also suggest taping your phone charger down so you don't have to crawl around - mine always gets lost under the bed because it is plugged into the wall behind the bedside table. Good luck!
http://www.homedepot.com/p/Lutron-Credenza-300-Watt-Plug-In-Lamp-Dimmer-White-TT-300H-WH/100001525
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Well my mom came for my Mastectomy and I had Tissue expanders placed. I was on a lot of pain medication for quite awhile. In hindsight it probably made things harder than helped as it zoned me out and made it hard for me to do things.
If I were doing it on my own I would
- Clean my house spotless.
- Have extra garbage bags and eat everything off of throw away plates, cutlery and glasses. This reduces chance of infection and no way I could have loaded and unloaded the dishwasher.
- Buy or make frozen dinners and canned soup. Stuff you really like. Microwave would be my friend I would stock up for quite awhile and maybe have a shopping list and some money ready so you could ask someone to do that if you run low.
- Watch and learn how to clean my drains ahead of time so I am not figuring this out only in the hospital.
- Buy a bathrobe or make a plan to hold my drains after surgery. Something easy. Keep everything clean and sanitary. I would get a box of alcohol wipes I used those to clean my drains. I also placed gauze and a small amount of tape to hold that on.
- They recommend button up stuff but I hated buttons. Many say that you can't pull stuff over your head. hmm I can't remember that being a problem for me. I had tons of baby soft tank tops that I bought on clearance with no shelf bra. They were wonderful. I wore them and pajama pants. I pinned my drains to my yoga pants but then it was a pain when I had to go to the restroom. I think then I started pinning them to my soft tank tops. Or I might have gotten a soft belt that was around my waist and pinned them to that.
- Try to clean as you go meaning just toss everything in the laundry if you can have someone come in and take out your garbage, scoop your cat liter and do your laundry that helps because really how many soft shirts and pajama bottoms can one buy.
- I think I showered by myself but my mom listened to make sure I didn't have problems or fall. Maybe just best to have someone on speed dial on the front of your phone just in case.
- Also try to walk a bit because even if it is just down the hall in your apt and back it helps your drains finish and your body not have problems.
- Wait to watch all the best stuff on your DVR,netflix hulu etc. so you don't go crazy. Have your electronics and large print library books etc. My laptop was my best friend.
- I agree put everything where you can reach it easily.
- It would be nice to have your prescriptions ahead of time because they wouldn't do this for me and so I Was in a fog induced coma at the hospital trying to get all the information.
- There is a great app called "Boldabeast" you can put on your phone to record memos and doctors visits. That will help if you need to listen to information you missed.
Maybe your family could just help with the garbage, cat liter, laundry and shopping and driving you to appointments . The things that are tough the first 2-4 weeks. If a friend could come watch netflix while you are in the shower then she could at least help if you had a fall or something. For the record I didn't fall I just was paranoid about it. I will call my mom she will remember and if she has any ideas I will post here. Her job was to take care of my kids and do all the cleaning, cooking and laundry. She drove me to the follow up appts too and well because I had her I didn't need to drive so I probably stayed on pain meds longer than if I was on my own. I have all of these other people that were making messes and eating etc your situation is nice because you can chill a bit more. My nurse navigator told me there are many women that do this totally on their own. -
At some point I started using a fanny pack formy drains. That made it so much easier than pinning them. I also had two would vac tubes and a battery pack around my neck which made it more difficult. So many tubes.
Make sure your microwave is in the counter. Mine is above my stove but I could not have reached up to put food in or grab hot food out if it for a while.
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Addendums:
Genius for holding drains is an inexpensive tool apron (I apparently need stock in Home Depot, lol!) I actually got one of these from the hospital when I left with drains after a recon surgery.
http://www.homedepot.com/p/The-Home-Depot-Canvas-Work-Apron-HD324655/202311423
For showering I used a clean shoelace and strung the drains (they have a loop at the top) on like beads then tied a knot and wore it like a necklace. Some docs will let you shower with drains, others won't. Also, I have read some purchased an inexpensive plastic lawn chair and put it in the shower, then they could sit in a waterproof chair in the shower if they got tired. I also put a hand held shower head in one of the showers in my house so that it was easy to shower from the waist down (wrapped plastic wrap around my chest to keep it dry) after surgeries with any showering restriction, and this was also used to wash my hair without getting the rest of me wet. Alternatively, I used the sprayer in the kitchen sink to wash hair - and some just go to a salon and have their hair shampooed and dried.
http://www.homedepot.com/p/US-Leisure-Backgammon-Patio-Chair-232981/100540423
Like exercise guru, I wore tank tops and PJ pants or yoga pants - I just stepped in and pulled them up - no need to put them on over your head. I used large safety pins and pinned the drains to the side seams.
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I agree even if you can borrow a counter top microwave. My mom said I couldn't open drawers or cabinets for about two weeks and having someone help with pharmacy runs and grocery runs was important.
She said the hardest was having a little paper to write your drains down on and also a little whiteboard or paper to write when you take medicine because you can't remember anything and its all at different times.
She also said I couldn't lift my arms for shirts for two weeks and then after that I put on soft cami tank tops. My husband sewed me a little soft belt with pouches I put my drains in. I have seen them online. sorry I don't have mine or I would send them to you.
She also said that you could not have the same person do everything. Maybe your neighbor would be willing to buy one or two things at the store if you had cash and had forgot. The key is to keep everything clean in that area and have little support for the things you can't do.
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you guys! You are amazing. Your lists and suggestions are making me feel in control and better already. I so so appreciate it. Exercise guru and special k you guys are awesome.
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so helpful special k. Thank you
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I agree with what has been suggested. All great suggestions. I didn't have expanders placed, but I am imagining that I would have taken more pain meds if that was the case. As far as the able part.... they already made great suggestions. Have everything ahead of time at waist level. I love the plastic lawn chair for a shower chair. I didn't need one, but itd probably be a good idea if you were alone.
I would say that the only thing that I couldn't/or wouldn't do for myself was scoop all my litter boxes. I normally only wash my hair every 3 days so that was not an issue..... but I did have my daughter drive me once to a salon and they did a good scrub at about a week. I could have lived without it tho. I didn't have much trouble getting dressed..... just take it easy and go slow. If you are a really big girl, it might be a harder and that might require some help.
Have lots of drinks and ready to eat fruit, frozen food, etc on hand. Make sure your microwave is easy to reach. Like someone else suggested super clean the house ahead of time. The world aint gonna end if it gets a bit dusty and messy
Have your vacuum out and plugged in already and clear the floor ahead of time of anything that you would need moved if you can't stand the shedded pet hair and just HAVE to do a quick room vac. And if you do that, go slow and don't over do it. I'll admit I vacuumed, but i made sure to keep my elbows down and not go all crazy...... and for goodness sake don't be doing it post op day one Make a recooperation station with the tv remotes, reading materials, meds and lozenges, computer, phone charger, whatever you like when you are feeling like healing up. I put it all in a basket next to me.I had someone drive me to doc appt, but you could use uber.
I agree less drama the better. If i was trying to avoid family drama etc I would rather buy extra underware and use uber than have difficult drama people around. But I am pretty independent that way. Also I will share with you..... my pets were the best incentive to being up and about and doing some gentle stretching. Petting cats is great Keep those shoulders from getting frozen! ETA..... ask your surgeon about On-Q pain pumps ahead of time. I didn't use much oral pain meds.... and I'm pretty sure they were a big reason. And yes.... I did pull up yoga pants and tank tops that I also just stepped into and pulled up or stretchy cami tops.
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I had help showering and preparing food the first week. Then I was fine alone. The things that caught me off guard that first week included not being able to open childproof caps, or the refrigerator door, or reach my hair to comb it. I think if I hadn't had help I would have been tempted to just do it myself, and that's what I would worry about. If you say, oh screw it, I'm just pulling real hard on the refrigerator door, it will hurt like hell and you could pop a suture.
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I agree with much of the above. It's individual. I had a bilateral done on 8/8. Discharged next day. I walked out of the hospital with the nurse's blessing. Spouse went to work. Honestly for me, I had no real problems. I wasn't given pain meds. Drains in for 6 days. Since it was soo hot that week I was wearing t-shirts. I had a wide ace bandage lightly wrapped around my stomach and put the drains in there. I know it sounds weird but it worked for me. Moving arms to a certain degree was tight but I was doing the ROM exercises right away anyway. I did have my daughter wash my hair the second day. That icky hospital film gets on ya..yuck. 4th day I was in shower with the hand held shower head(could not get chest wet). Showered all, even hair(that was tricky) and washclothed chest.
Carrying anything is the big problem. I was told nothing over 8lbs in the beginning, but carrying it down flights is going to put extra stress on it. I would, if you can, ask for help just for what you need, and tell everyone thanks, and I will call if I need anything else and see how it goes.
Like they said above, have everything you can think of needing, at arm level. Pre make some meals or buy some frozen, or take out. Take care of bills etc. so when you are home, you can rest and sleep, pet the cat(s) and get up and pee.
oh and flip through every station on the remote. -
I haven't read the prior posts, but my answer is, "You won't know."
No reconstruction is easier on people - less surgery, less complications. I had no reconstruction, went home same day, great family support but I wouldn't have died if I"d been alone. I just would've needed home health for the drain instructions because I was too loopy to understand what the nurse was telling us. Some people have to stay overnight, some people are really laid up for a while, some people are relatively fine. Some of it will depend on your general state of health and fitness, some will be luck, and some will be mystery.
I'm sorry I can't give something more optimistic. Do you have the funds to pay for some help if you need it?
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Although I had a single MX, my MO had the visiting nurses call me to arrange for help as I lived alone. I foolishly said I didn't need it.
When my sister had a DIEP FLAP after double mastectomy, I warned her, "Whatever you do, take the visiting nurses!"
She did and was so glad she did.
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