Bilateral mastectomies and reconstructions

Artista928

I've been diagnosed with what they say looks like stage II, grade 3, IDC cancer that is 3-4 cm. I've decided on bilat mxs because the right one has a 5mm lesion that they can't rule out for sure that it's nothing, just that it looks like nothing. Well, that's how the left one started, and I have occasional pain/discomfort in it so my decision is sealed.

My problem is I am alone. I don't have home care benefits on my insurance plan. I understand I will need to do bandage changes and drain the drains which are 4 total 3 times a day. Wow. Bonus for me is I have generalized anxiety for which I am on meds for and am on disability for. On top of my regular meds I take Ativan for the times I need more help with anxiety. The bad thing is this makes you really loopy and I know I'm already going to be loopy and all after surgery. I talked to a social worker and she says I could get a home care person but it is very pricy because you have to get insurance on them to for if they get hurt or mess me up. Minimum would be $65 per VISIT, not per day or I could figure that out. So that's out for sure.

Anyone here in my boat of being alone and not being able to handle drainings 3 x a day for 2 weeks??? Yeah they say it's easy to do, but I have diagnosed anxiety which landed me in the hospital before so it's not just your regular anxiety.

Anyone else to call/contact? What to do?

TIA!

debiann

I don't know how anxiety will effect things, but if you know you are going to be on your own after the mx, it would help to prep your house before surgery.  It will be difficult to reach up to get get things out of cabinets. Put the items you will need at counter height. I found a shower seat to be useful. For the drains, I wore a robe with large pockets inside out and placed the drains in the pockets. I had a pouch I wore around my neck to hold the drains in the shower. Stripping the drains is really not bad, you just run your fingers along the tubing to push the liquid out. I would sit on the bed to do the drains and empty them into an old peanut butter jar with a lid. I could then empty the jar into the toilet when convenient. 

Good luck to you.

Artista928

Thank you! I can barely leave my house with my anxiety issues. Can you provide a link to the robe that worked for you and the pouch that held your drains while in shower? I have no clue where or what to look for and if I can just get these online, it would be great! Thanks!

debiann

http://www.shopnational.com/p/Rainbow-Stripe-Plisse-Snap-Coa

I bought my robe at K-mart, but National sells the same type, something that opens in the front with patch pockets. I wore it inside out.

The pouch I used was homemade, a mesh bag from the dollar store with a shoe lace tied on the top to make it like a necklace.

http://www.marsupialpouch.com/#!store/cank/collections/all/1

I saw this online if you want to buy pouches.

Also, ask your BS in advance what kind of bandaging, pads, creams or meds you will need in advance so you don't need to go shopping after surgery.

I had reconstruction, so my needs may have been different. I went through 2 boxes of 4 inch guaze pads and a large tube of neosporin. Some docs prefer bactrim, some don't want you to use antibiotic cream at all, so you need to ask. The pain meds made me constipated, so I needed stool softener and I switched to ibuprofen. I was allowed to use mederma cream for scars as soon as the incisions healed.

Most important, think about your daily routine and put things you will need easily within reach.

Wishing you well 

Artista928

Wow, thank you so much!

Artista928

I'm finding housecoats/robes/dusters with only 1 chest pocket. Since I'm doing both, anywhere has 2 chest pockets? That's a toughie to find it seems..

I don't sew and don't know anyone who does. Is there such a thing as buy the duster robe you want and glue pouch pockets on that say a nurse could do for you in the hospital to see where it should be located for best results in holding the drains since I'm not at all coordinated? Sounds like I"m going to have 2 drains on each side. Will 1 chest pocket on each side work? I don't know what it's going to look like.

Thanks!

SpecialK

I had bi-lat mastectomy and had four drains and just used big safety pins to pin them to the inner seam of my shirt - I did not buy anything special to hold them.  The drain is shaped like a grenade and they have a large plastic loop at the top, so this is easy.  I also showered using a clean shoelace strung through those loops, tied in a knot, and worn over my head like a necklace.  You can also use a long piece of plastic wrap rolled up - that way you can dispose of it each time.  Another idea is to use a lightweight fabric tool apron, you can get them at Home Depot or Lowe's - I will link what I mean below.  There is another product called Pink Pockets that some have used and liked.  Or, if you have a lightweight top or shirt with pockets just wear it inside out and put the drains in the pockets.

http://www.homedepot.com/p/The-Home-Depot-Canvas-Work-Apron-HD324655/202311423

http://www.pink-pockets.com/

daisylover

I think that preparation eased much of my anxiety (not diagnosed).

I am a wuss when it comes to medical stuff. I was fine after the first few times stripping the drains. I did not have reconstruction, but believe that not raising your arms is key for those who do; so, as suggested by debiann, make sure that you start thinking about items used daily to move to counter height. I hung all my front opening zip up clothing items on low hooks (using over-the-door hooks on top dresser drawer) and placed a laundry bin of underwear and socks and pull-on pants on a low surface.

In the shower, I used this drain belt for $22: https://www.tlcdirect.org/Post-Surgical-Drain-Belt... You can move the pouches around due to velcro attachment... You could wear it with anything... I also borrowed a shower seat from my father -- I was able to use hand-held shower attachment to clean my lower half That was really a good feeling.

I really lived in my cami, though (slightly expensive, but I wore it every day, under loose fitting shirts and sweatshirts, always on its own to sleep) https://www.tlcdirect.org/Post-Surgery-Mastectomy-... I wore zip front sweatshirts with pockets a lot too... just safety pinned the drains (has hole at the top for this) to the top of the pockets. You would need to be in air conditioning for that.

Others have used tool belts (can't beat the cost) similar to this:

http://www.homedepot.com/p/The-Home-Depot-Canvas-W...

Basically, you can pin the drains to many things -- JUST NOT YOUR PANTS. You may forget (fuzzy brain) and pull them down/out. That would create anxiety.

I took only tylenol daytime and Gabapentin at night (already on that for migraines) after my BMX; so, I am not sure how pain meds affect your ability to handle the drains. Make sure that the hospital will have your daily meds (ones continuing from before surgery, like anxiety meds) because my hospital did not have my sleeping pill or migraine meds (even though pre-op they recorded them) -- I could not get tylenol for a headache and had severe reactions (migraines) to all the pain killers that they traditionally use... They will only let you have what is on your chart and only if it is in-house... Be clear that the hospital will have what you need (on hand in their pharmacy) to stay calm.

My visiting nurse merely took my temperature and LOOKED at my drains to see if they were functioning. She was a waste of insurance $. I am sure that others have received different and better care?

Any surgery is scary to contemplate. I just would like to reassure you that I went through 4 surgeries in a few days over a year of treatment, and they were all fine. I had my last surgery 4 months ago, and it is a distant memory. Make sure that your surgeons understand your anxiety and are prepared to deal with it. If you need assistance, ask friends. I have found my friends very eager to help -- they just need you to let them know what you need.

Hopefully someone with diagnosed anxiety will respond soon -- will keep you in my thoughts and prayers.

Artista928

OMG! Thanks for the pink pockets link! I can just use the dusters I have and stick these pockets on! Wow! Perfect! Thanks much again!

Artista928

Thank you daisylover! You just solved another what do I do about the shower with these things with the tlc link!

Thanks everyone for sharing. I know I'll attend a class on what to expect, what you need and all, but I know little things that you don't think of are not covered in a short class, so thanks so much! Hugs.

debiann

The tubes on my drains were long. When hanging, they went past my hips.  I put them in lower patch pockets of my housecoat turned inside out.

Nagoskwe

I got some button up pj tops and am having pockets sewn into the inside of them for the drains, That way I can be comfy and not worry so much about the drians, and OMG the mesh bag thing for the shower is wonderful headed to go find one today!

Artista928

debiann: Do these pockets just prevent the swinging motion when you walk or do they alleviate the weight you feel from them hanging? I'm thinking about getting pink pockets as was suggested as I can just stick them at the right place on any garmet I'm wearing. That and the shower belt as far as the managing the drains go. Just curious, esp about if you feel them hanging/tugging esp since they go down so far?