Anyone else basically alone/minimal help?

Artista928

Aug 6 is my bilat mxs with implant recon sx. I live alone. My bro is driving up 8 hours from LA the day before and will be here max a week. My fam doesn't know so he needs to sneak up and back down before the following weekend when he's expected to be at dads, especially since he's missing a weekend (he's a sub teacher and in the summer he visits my dad 1 hour away every weekend). Plus he can't handle seeing me or anyone he loves in such a shape after sx. I honestly wasn't sure he was going to come up to visit until some time after the sx.

The only other person is a good friend 5 miles away who can only check in in the early am before going to work, like 6:30 am and then late afternoon after work like 4:00 pm. She is also challenged with hanging around "sicklies" so it will be helping me with meals, take care of my guinea pig, laundry, etc. Nothing to do with handling me or my drains.

The first week of Sept she's gone to LA with fam and back on Labor Day. I'll be on my own. There is a drivers for survivors program at the hospital where volunteers will come and pick you up, stay with you through your appt if you wish, and bring you back home. They will also make stops on the way to or from your appts to the grocery store and such. They just won't come and get you just to run errands. You have to be going/coming from a medical appt. So I have that.

I also have treacherous concrete stairs leading up to my apt. One slip and you're a gonner, very steep. That will be interesting to say the least.

Anyone in/been in/going to be in my boat as far as support goes? I realize it's all individual differences in how we will do after sx and with the txs and such, but would love to hear any personal stories.

Straitlover

When I had my BMX w/ expanders, my sister came up for my surgery. It was on a Wednesday at 4 PM. We left the hospital Thursday afternoon, spent the night at my house and then drive to her House on Friday morning. She brought me back to my house Sunday, and I was alone for the rest of the time. My boss and a couple of co-workers ran errands for me (take my trash off, brought me some meals, etc), and my boss took me to a couple of dr appointments. I drove myself to appts at around the 2 week mark, which is around the time I ended up back in the hospital (not related to me driving!!!).

I did all my medical & hygiene myself (cleaning, drains, etc) from the get go.

Artista928

Thanks you so much for sharing! Makes me feel better that it can be done and perhaps I won't have to burden people so much! X

muska

Hi Artista, may I ask now old you are and whether you have any other conditions/physical issues?

Artista928

I'll be 51 on 9/28. I have bilateral knee osteoarthritis and sleep apnea. I'm overweight, 213 lbs 5'5". And fatigued a lot. Other than that, no real med conditions like that. The stairs leading up to my apt gives me a mental condition! lol

muska

They will keep you at the hospital for at least one night, maybe two. If all goes well you should be ok to take care of yourself assuming you get prepared beforehand - get groceries, clean he house, do your laundry, etc. Your main limitation will be not being able to lift your arms high or do any lifting at all. You should not be lifting your arms above your head after the surgery. It is a good idea to check that you won't have to reach high for anything you might need, e.g. if you keep your dishes on the top shelf in the kitchen move them lower. Make sure all the things you might need are easily accessible and you don't need to reach for them or lift anything heavy.

It may be difficult to wash your hair without help the first couple of days - you can't lift your arms and you should be careful not to wet the drains. But that's only temporary and if they take drains out quickly you will be able to have a normal shower pretty soon.

They will show you how to take care of the drains before discharge. That's easy. My hospital arranged for a visiting nurse to come and check on me on the day following the discharge and one or two more times. You will also have a follow up with your plastic surgeon - one or two weeks post surgery. You won't be able to drive until they take the drains out. It's impossible to predict how soon that will happen - some women have drains for one or two weeks only, others need them for much longer. I had drains for five weeks.

Good luck!

Artista928

Thank you so much! Yeah, I'm preparing the place to where things should be easy for me. I've never had any kind of surgery before so I have no clue how my body will react to anesthesia, rx pain meds, etc. I think if I had some kind of procedure before it may help to get an idea of how I may respond, but being clueless is a bit much. Especially for my bro and my friend who are more worried than I am. I am determined not to be so dependent, body willing, so hopefully my mind shall overcome much of the physical stuff except of course I'll follow all the precautions and not to be a martyr.

muska

Don't worry, you will be fine. That is a long but not a very invasive surgery. Mine started in the afternoon and ended after 9PM. I had no effect from anesthesia whatsoever. They wanted to discharge me the following morning but I insisted on staying at least 24 hours - actually, my boyfriend said he would not take the responsibility of taking me home that soon - so they kept me for another night and discharged the following morning. I did not need any narcotic pain relievers and just took tylenol before bed only during the first week. I remember I was pretty active from day one: made lunch for both of us, entertained visitors and did all other "activities of daily living". I have a hairdresser in the building where I live, so I simply went to him for hair wash on day 2 and then somehow figured out how to do that myself at home. We went groceries shopping and to a restaurant during my first week post-surgery.

Having the drains for five weeks was more difficult than anything else. Hopefully, it will be shorter in your case.

Good luck!

Galsal

I always put a stack of paper plates, bowls, throw-away cups, cutlery, etc on the kitchen counter so I won't have to reach for it. Also the food stuffs I would be using the most - coffee, sweetener, food for the cat, and so on. Also, I didn't realize until the first time I tried to bend over to pick up something I dropped on the floor - oh noooooo. So put things wanted from the bottom higher also. You won't be lifting anything over a certain weight - even a gallon of milk will be too much. For the first bit you'll need to keep your arms plastered to your side as much as possible - become a T-Rex.

I say always after having seven surgeries from the BMX through reconstruction and recisions. You can do this. Friends brought by some dinner meals every few days. You won't be driving with drains in you so plan ahead.

Artista928

Thank you so much for sharing ladies! You're helping me and especially my support feel more at ease. Luckily there is a free program at the hospital where volunteers come pick you up and take you to your medical appts. They will also make stops at stores and such. They just don't come out for errands alone, you have to be going to a med appt. I live in Fremont CA and the only med onc I found that not only takes my insurance (Obamacare BC PPO which is different than regular Blue Cross PPO) and has good reviews is in Berkeley. It's 25 miles away from me. They go up to 60 miles one way. How special are these people and the lady to have created such a program for free for us cancer pts!

Much love to you all. God bless you.

Artista928

Also, I hear too that chemo and / or rads make you feel worse than after the sx as well (not the first few days after). Is this true? And what is chemo brain? I already am dingy and forget things that are under my nose sometimes so this scares me too. Thanks!

Itzy

Good luck to you, Artista928!  Good planning will help a lot. 

Don't forget about checking closets and drawers for button front tops and sweat pants or easy pull-on types. I had virtually nothing in button front tops, so I made a few trips to local thrifts, and found what I needed. 

Artista928

Thank you Itzy! Yeah, I have the same issue. Everything I have is pull over the head. In the summer I wear free flowing tank type dresses that are all pull over the head. While the hospital gave me a couple of cammies with pockets for the drains, I can't imagine being in it for too long because it's so warm out and I run hot anyway, and I'm not in menopause yet, close at 50, but not yet. So I'm checking into light comfy dusters. The onc nurse at the hospital told me to just come in to the hospital wearing it and leave wearing it. Who cares what people may think. It's not like I need to look good checking in and out of the hospital. lol. So that's on my shopping list as well.

Jackbirdie

you have gotten excellent advice above. I won't repeat. I'll just add that I was 57 at dx. Had a BMX 12/18/14 and live alone too. My brother was supposed to come for a couple of days but his flight got canceled. My only friend couldn't handle anything to do with the drains etc, which was very frustrating,but was good with the dog, helping make the bed, some housecleaning. I made lists and others went to the store. I took taxis to dr. appts until I could drive.

It was a hard time but I made it. I think with the advice you've gotten you will make it through fine.

Artista928

Thank you Jackbirdie!

Also, can you sleep on your sides with drains coming out of both breast sites or is it too uncomfortable? I can't sleep on my back..

queenmomcat

Good that there's a ride service! And that your brother can be there with you, if only for the first week.

It might be worth asking the hospital/health care group if they can help with some of the practical issues you're facing. I can't promise they do/will, but many do.

The lovely ladies on the boards will come up with good suggestions. Do you know what your treatment plan's likely to be? Is there something in particular you're concerned about? Check out the treatment-specific boards, even if you're not sure now which you'll be doing. In my case, I didn't know if I'd need a mastectomy (I didn't), so wanted to find out as much as possible ahead of time about reconstructions options. In your case, Chemo? radiation?

Jackbirdie

regarding the sleeping. I am a side sleeper too. For many months I could not sleep on my side. First it was the drains, then the pain, then the port they put in for chemo.

Somehow I managed to catch some Zzzzzs on my back. I am finally back to side sleeping now. When your body gets tired enough, you will get some sleep on your back. If you can find if make some small mastectomy pillows to support sore areas that will help, and they can also be used in the car when you go to appts to absorb shock and protect from the seat belt

luvmygoats

Talk with your nurse navigator. I assume being in CA you're at a fairly large center and they staff such a position. Can always call the local American Cancer Society office and see what they can do for you. Phone fingers are your best friend. Google local resources. If you will be going to a large oncology group they most likely will have a social worker. Now you might not have established with them yet, I know I did not until after my LX. There is all kinds of stuff to access and this is the best time to find it.

I know those dorm prop up bed pilllows are on back to school sale. I want a new one and saw Target has them for $12.00. I could not sleep on my LX side for several weeks. Cannot address MX. Getting in and out of bed will be the hardest since you cannot use arms to push down. Maybe someone else can speak to this. You can in the meantime do some ab strengthening exercises. Some people do rent recliners with electric mechanisms if buying such a thing is out of the question or not appealing. I know of at least one person on here who rented an electric hospital bed and she found it the best thing ever though not sure how this compares cost wise to recliner rental. Most hospital beds are also twin so sheets might be a problem though again if this is appealing it is certainly the time of year to get a couple of sets cheaply.

Artista928

I hope bro will last here with me for a week. While he loves me to death, he's queezy with such stuff so not sure how long he'll be here. lol.

Surgeon thinks chemo will for sure be part of the tx. Rads may or may not be since both are being taken out. Hormone med probably since I'm ER & PR positive, but if the side effects are too bad then I'll stop and take my 9% chance of recurrence.

I've been digging on the boards since I joined last month. Fantastic info but I created this thread because I wasn't finding many at all who are doing it/did it with how much I'll have or less as that could always happen if my 2 help either can't take it or something comes up that they can't be here like that.

I have a call in to my nurse navigator to give me a cal back. She is great. Washington Hospital in Fremont CA is awesome with all the services they offer. Highly recommend them and their docs if anyone is in the area facing this stuff.

And thanks for the tip on the back to school sale on dorm prop pillows! I didn't think about how I'm going to get out of bed by myself. Figured I have a walker so I'm set. Oops!

Yeah, if my body simply won't let me sleep on my back then I should be real peachy to be around! lol. oy.

Artista928

Oh and one thing I read somewhere here is shingles! I'm 51 end of Sept and since immune system is weakened and I had chicken pox as a kid, I have a higher chance of getting it. That's all that's needed! So it says to ask to get the shingle vaccine that's normally prescribed for 60 and over, before starting tx.

Also, the nurse navigator just called me. Such fast service they have. She said get a body pillow from Target or Walmart. Put one end between my knees and other between my arms and can lie on my side without incident or things rubbing up against each other. Said to get it now and practice using it. So it's on the list!

windingshores

They will give you a visiting nurse at the hospital. The hospital social worker gave me taxi vouchers if that helps.

My 25 year-old daughter was living with me but had a procedure right after mine on a joint, and couldn't lift anything over 10 lbs either. We were a pair! She also doesn't drive. I was lucky and lived near public transportation.

I did too much the first week- laundry, walking to store and bringing bags home etc. But the results, if painful, were not a disaster and I got the message and rested more the next two weeks. I could still function pretty well.

I forgot to move toilet paper and early on reached with the wrong arm- ouch! But again, no disaster, just more pain for a day or so.

I think it is really doable but with adequate preparation. I have trouble asking for help. I did ask one friend to go to a drug store for an Rx on his bike, which he did, but he didn't offer anything else and I wasn't going to bring it up. Then again I had one drain and it came out first week.

Jackbirdie

check well on the shingles vaccine. If I am not mistaken it has only about a ten year benefit and you can only have it once in a lifetime. So definitely drill down in that question. It might benefit you more now, or you may want to save it for later

Artista928

^^ ^^

Yeah, I'm doing as much prep as I can think of. On 8/1 my cleaning lady that I have come over every 3 months is coming to deep clean as well as help me set up my place. I have quite the to do list down to the details as I tend to forget what I just thought of shortly after because in general, I have not the best memory.

Which is why I'm worried probably more about chemo and chemo brain because I can forget things like turning the stove off and not just where I put my keys. Things can be under my nose but I'll just sometimes not notice.

Artista928

Jackbirdie: I think you can have another one later on but I'm not positive. But I will for sure check it out with my bs on what he thinks because I know a contraindication is for people who just had chemo as the immune system is compromised and you don't want to have this vaccine on a compromised immune system.

proudtospin

Arista, I live alone and while have not had mastectomy, have had my share of lumpies, foot surgery and junk. Remember take out for dinner!

And remember to let your neighbors know what is happening, you may suddenly find you have new pals. Mine are great and have offered to do the runs for anything I am missing. Dang but my neighbor was so great when I was recovering from foot surgery, I was pretty good but scared to come down the stairs....he came over each morning and just stood at the bottom of the steps in case I fell!

betcha you will be fine

muska

Getting vaccinated beforehand is an overkill in my opinion but I am not a medical doctor and do not know your medical history. I think you might run this question by your breast surgeon if it concerns you. When it comes to chemo you will ask your medical oncologist. Maybe they advise this in some special situations when one has  young kids in the house or works with young kids.

I_Spy

Arista I am just like you: I'm 51, I live alone, and my brother stayed with me for a week (he came from LA too!). There is no such thing as a home nurse coming to do your drains -- some women on here have gotten that, but they are blessed in ways we are not. I don't know if it is another State thing, or just another hospital thing, but no nurse comes to my house. I will tell you this: getting my house ready ahead of time made a huge difference, and you are doing all the right things. Also, make a little medical kit with a plastic hobby organizer, and put some gauze pads and tape and scissors in it, along with a pen and little notebook. You can use that when doing your drains. The hospital will give you specimen containers to use to measure the drain output (ask if they don't), and you can put those in your kit. Then you just have a place where you do your drains (probably about twice a day). I did not want anyone to watch me. I am not generally squeamish, but it is definitely a unique experience. Take deep breaths. however, now two weeks out I'm totally used to it and it doesn't bother me. But I don't think you'd want your brother or friend to do it.

Other than that, I was pretty roughed up for the first week. Your brother can help make you food, pick up something you dropped, open windows, and just sit in the house while you sleep (which is comforting). A week out I was doing MUCH better and felt okay about him leaving. Two weeks now and I feel normal except for being tired and being uncomfortable. I have had several other major surgeries, and this compares definitely. It's a doozy. However, you can totally do this by yourself if your house is set up and your brother is there for a week. You got this!!

Artista928

Thanks everyone again!

Muska: I'll ask my surgeon. I may be overreacting but I've seen people with it and it was pretty paralyzing for the. That's all that I need with the kind of help I'll be having. 1 in 3 get it in their lifetimes so if I'm 1 of a 3, I'd prefer to get it long after the txs are over.

Artista928

Also, neighbors are out. I've been here 7.5 years and they all can barely summon a hello much less anything else.

exbrnxgrl

Artista,
You've been given good advice. I used a wedge pillow with regular pillows on top and a pile of pillows under each arm. I too am a confirmed side sleeper, but the pillow "throne", did allow me to sleep. My bed is very high and I am short, so I kept a little step stool by my bed to get in and out. I did take walks everyday (barely around the block, at first), but tried not to over do. My dd's did help me shower before the drains were pulled (some docs do allow showering with drains but not mine), but I did all the stripping, emptying and measuring myself. I don't recall anyone in the Bay Area saying they had a home/visiting nurse. Speaking of the Bay Area, I'm right down the road in San Jose. Please pm me if you need a hand or just a chat (I really mean this).
Caryn

Artista928

Caryn,

You are so kind to offer me your ear or help. Thank you so much. San Jose can be far depending on where you are at. I'm at the north end of Fremont, on the border to Union City.

I know that with showering, while the onc nurse said I could with drains and bandages still on, I won't until the drains are out. I don't want to deal with having to change wet bandages so I'll just use wipes to touch up and wear my hair in a cap if it gets too bad looking. I'm not ready to cut it shorter (it's just above my shoulder) as I enjoy my natural curls, let alone shave it right now. Sounds like I'll have until my second or so chemo before it really begins to fall. I already am diffusely thinning as I have it in my genes thanks to mom but it still doesn't look bad yet.

Thanks for the heads up on more pillows. I'll have to get more regular sleeping pillows. I just have the 1 at night for myself.

Yeah, it's my bro who's insisting on some kind of home care. It's taken me since 6/2 when I told him till now to get him to a we'll see how you do. He's willing to pay what it takes to get someone in here. His focus now is on my housekeeper who has cared for the ill before but she has her own cleaning business and I don't feel I need that kind of care. At least I hope not. Having had no sx of any kind before, I don't know how I may be/react to it all.

Thanks again for offering to help! Means a lot. Maybe after this is all over we can meet up somewhere for coffee or something.