Shopping/packing/to-do list for surgery + recovery....
Comments
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Trinity,
I really think there's something to that connection btwn mind/body. Maybe having that constant low level of stress that causes us to try to acheive more in life contributes to a weakened immune system. I'v read that our bodies have cancer cells popping up frequently, and our immune system almost always kills these mutant cells. Its only when the immune system is overwhelmed that cancer takes hold.
In order to link this to the packing thread, lets take some good mind/body books with us to the hospital!
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Trinity,
I have not read Louise Hay's books so my comment is probably not valid. Although I believe excess stress is not good for any one, I have a hard time swallowing that BC is caused by over nurturing! One should take care of oneself but some of us just have nurturing natures and maybe even nurturing professions. I like being a nurturer and refuse to blame myself for my bc. Boy, are we off topic for this thread! Caryn0 -
Oh, Louise Hay - I have a love/hate relationship w/that woman. I really believe in the mind/body connection, but I don't buy into the stuff about a "type c" personality and its connection to cancer. If stress caused cancer, think of how many more people would have cancer! That said, I have found lots of other mind/body techniques to be extremely helpful in both my bouts with BC.
I was an overachiever, overnurturer, etc. and a highly stressed big-firm lawyer. Got dx'd, quit all that, practiced mindfulness, gratitude, lived a much more relaxed life, and still got cancer again. There is something messed up w/my DNA, not my mind!
Rk85 - no golden handcuffs for us, either - hubs is not a lawyer (b-school grad) but when we bought our first house years ago, even tho we had two nice-sized incomes, we mortgaged based on only one, just so there'd be no pressure. Look at lots of friends w/huge mortgages, multiple kids in private schools, fancy cars and miserable lives. Not for us, either.
Now - to keep this on the packing/prep theme - if anyone wants to know about what books/cds I've liked for mindfulness stuff, I'm happy to provide a list - even did a whole Mind/Body Program for Cancer Patients at Herbert Benson's Mind/Body Medical Institute back in '01 when I was first dx'd. Fabulous - and good tools for post-cancer too!
Sarah
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Sarah, thank you for the words of empathy and encouragement. It will be an emotional week. But, emotions are okay. I can live with those.
rk85, you are welcome. I hope the camisole works out for you. I practiced law for two years and was miserable. I went back to school and have taught high school biology for 15 years (minus one for maternity)...very happily. And as for living within our means, we try to keep our monthly expenses very low since my dh is a stay-at-home dad... Which is making this all WAY easier. He already takes awesome care of the kids' day to day needs and does a lot of the shopping, cooking and cleaning (during the school year...I get to do it in the summer) and he doesn't need to take time off from work to support me during recovery...:) Your surgery is 10/25, right?
Claire
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Sarah - I would greatly appreciate your list of mindfulness books/cds ... thank you!
Caryn - I'm also a very loving, nurturing, compassionate woman (as most women are) and I absolutely agree with you that we shouldn't blame anyone, including ourselves for getting BC ... however, the one thing I've learned thus far in this journey is that I need to learn how to say "no" at times, and put "me" first when needed ... I certainly didn't intend to upset you by the comment I quoted by Louise Hay ... for that, I'm truly sorry!
I seemed to open a can or worms with my post about Louise Hay ... oops! My profuse apologies! I was just wondering what others thought of her books ... that's all ... I don't necessarily agree with everything she's written ... but, she does give you some things to think about ... just some points to ponder ... that's all ...
Love~Joy~Peace
Trinity
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Oh Trinity - there are lots of us looking for answers to "why me?" and Louise Hay does provide people w/some solace . . . even if she's not for me, she might be for someone else, and that's A-OK by me. I'm just not buyin' it! But re saying no, putting me first, etc. - THOSE are such valuable lessons for most women - lessons I got schooled in during my first round of cancer - still doesn't come easily to me (ask me about all the meals that are coming to our door - love the comfort and convenience but I squirm at being taken care of like this!), but those are really great ways to care for ourselves.
OK, so - reading list for pre/post surgery and recovery . . . I have found that sometimes it's later that your mind gets busy around your cancer diagnosis - for a while you're head-down, getting thru dx, treatment plan, surgery, chemo, rads, etc. and then all of a sudden you're "done" and you're free-fallin' and feeling awful. So whereever you are in your path of cancer - these could be helpful:
- Any book by Pema Chodron - in particular When Things Fall Apart and The Places That Scare You
- Books by Thich Nhat Hanh - another Buddhist - in particular: Taming the Tiger Within: Meditations on Transforming Difficult Emotions (nice list of TNH quotations is here: http://www.goodreads.com/author/quotes/9074.Thich_Nhat_Hanh)
- The Wellness Book by Benson & Stuart
- Not a mindfulness book per se, but comfort in the storm - After Breast Cancer by Hester Hill Schnipper - great for those hopeless times when you feel like you might be all alone after this. Disclaimer - Hester is an oncology social worker in Boston and I am profiled in this book and quoted on the jacket.
- Peggy Huddleston's Prepare for Surgery, Heal Faster and its companion CD - this is a little "out there" for some and I didn't do many of the things she suggests (like bring a list of affirmations into the OR w/you for your surgeon or anesthesiologist to repeat while you're under), but the guided meditation is good, I think.
- Belleruth Naparstek - Meditations to Promote Successful Healing - this one is also more "out there" - but to each her own. Her tone of voice is a little annoying.
- My favorites - CDs created by the Benson-Henry Institute, now at Mass. General Hospital (http://www.massgeneral.org/bhi/). Herbert Benson is the pioneer of the Relaxation Response - at the forefront of showing that relaxing your bod for 20 min./day can do things like reduce hypertension. The "online store" tab on the left will let you listen to snippets of the relaxation CDs and you can order them thru the site. My all-time fav, after 10 years, is the one by Olivia Hoblitzelle, but see what might work for you. I had this one on cassette in '01, had given it away in the interim, and re-ordered it for myself for this go-round on CD. A goodie.
If I think of more, I'll post. As you can see, into the Buddhist thing - my first cancer was very aggressive and I was very young (32), the docs were really worried about me and I about myself. I spent a lot of time getting down & dirty w/the thought of dying young, and those Buddhist tenants helped me. Also re suffering - lots of suffering physically & mentally while in treatment, right?
Sarah
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Sarah,
The Belleruth Naparstek CD is the one that drove me nuts. Her voice was part of the problem but she also mentioned visualizing "magical friends and healing bands of allies". Who did she mean? Unicorns? The Lucky Charms Leprechaun?
I do believe in a mind body connection and a positive attitude( I put Pollyanna to shame at times) but I have to have it more grounded in reality. No rainbows, fairies or Keebler elves for me. And no blaming oneself for ones disease, unless you purposely digested asbestos!
Continued healing to all and remember that our recovery is not always a straight path so don't let the curves in the road get you down.
Caryn0 -
fpiraino - your post was deleted by the community on the October surgery thread ... many women, including myself, wondered if you worked for this particular company ... especially after looking at the price of this item ... there are ways to promote your item without preying upon the BC community and being intrusive!
I'm 3 days out from bmx with TEs ... and, having no problem with managing my drains ... thanks, but no thanks!
the "one size fits all" is priceless saleperson talk ... I'm totally appalled!
I find it most interesting that you only have 5 posts on this website ... hopefully, this will be your last ...
are you a BC patient yourself? If so, I hope you're successful in managing "your" drains!
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Claire, the amoena camosole arrived today and it is really awesome. The size seems perfect (although it is hard to tell how it will fit breast-less) and it is really really comfortable. The only hitch is it arrived without the drain pockets. I called the store and she ordered it from the manuf for me right away, so I should have it before surgery. Thanks for the info, I'll be thanking you even more post surgery when I don't have to wear the horrible itchy device they put in after my lumpectomy.
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The nice thing about the Amoena is that it can be worn as a tank top after the drain pocketscare out. Caryn
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two words ... silk pajamas
I ordered them before my surgery, and they were waiting on my doorstep when I arrived home ... they've been a lifesaver for me .. they have allowed me to "slide" right off the sofa and/or bed ...
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Wow, Trinity do you mean real silk or the faux silk type? Cancer has really put my budget through the wringer, not to mention all the de-stressing online retail therapy I've had to do because of it, so I'm not sure real silk would be in the budget right now, plus hand washing?
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Yes, Caryn I can definately see where the Amoena can be used later. I like the fill pockets too because I am a D right now, having micro fat grafting recon after oct 25 BMX, so i will go down to a A or AA or something like that. Basically, I won't be concave but can't expect much more. So until the second round a couple months later, it will be helpful to have this option. Not everyone in my life knows about my situation, so this will help me not have to explain.
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rk85,
Silk pajamas was a suggestion made on this thread ... I actually ordered "real silk" ... surprisingly, it didn't break the piggy bank ... but, I'm sure a synthetic would work just as well ... if you're having a bilateral mx, as I did, you might want to purchase a pair ... I couldn't get out of bed without yelling for help before I put them on ... lol ... just a suggestion that was passed along to me on this thread ...
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Good to know Trinity, I'll look into both the real deal and the "filk" ones.
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Okay...two things...
First, the camisole that I ordered and told people about on this site (the Amena) has not been useful. I thought everyone should know. In my case, the drains are in just the wrong spot and because the camisole is snug, it pulls against the drains in a really bad way. I didn't want the suggestion of that camisole to be out there without my caveat...
Second, I am really glad that I had a fanny pack. Since I ended up not using the camisole, my drains are in the fanny pack. That has worked out very well (though I am sick of walking around and sleeping with a pouch like a kangaroo). I am really glad I have it.
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Did you have the front closure, CLC? It did look very snug. The Amoena 2105 is a very stretchy tank top that you can step in to and pull up. The drain pouches are moveable and can be positioned almost anywhere at the front or side. They also completely removable so you are left with a tank top that you can still use. A camisole can be useful, just maybe not the model you had. The Softee Two was quite good as well. You will be happy when the drains are gone altogether! Caryn
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Yeah...I had the zip up front. I was hopeful it would be useful later on, too. Actually, still am hopeful of that, though I will return the one I never opened. I would imagine that the looser, step in camisoles would have been a better choice. That is why I wanted to make sure to speak up on the Amoena... On the Amoena, you can also move the pockets for the drains. But it is the elastic under the breasts that was pulling on where my drains enter my body. The camisole would probably have been fine if my drains came out a little higher.
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ITCHING:
I have taken narcotics many times in the past but for some reason this time the painkillers made me ITCH like crazy, all over my trunk and arms but in particular at ever seam or point of contact between my skin and and clothing and my scalp. Scratching causes hives which cause more itching.
I had a single mastectomy early in the morning on Thursday, 10/20, and started itching about 2:00 am. (The itchy surgical bra did not help -- I suggest taking your comfy bra to change into ASAP.) I didn't think to complain, but the nurse noticed the hives on my arms at about 5. I had to wait until 8 for the surgeon to OK Benadryl which works pretty well.
I take two Benadryl with every dose of Norco and the itching is now bearable. In the future, I'm going to have the surgeon include Benadryl as part of my medication regime so I don't have to wait.
I had never heard of itching as a side effect of narcotics, but it is evidently pretty common.
Nausea from Anesthesia:
Every time I have had general anesthesia, I have thrown up for hours, and one time for days. I stressed this to the anesthesiologist and he ordered a scopolmaline patch which was put on while I was in holding. This is the first time I have had a patch.
I had NO nausea whatsoever. I couldn't believe it -- I was so dreading how throwing up was going to aggravate the pain.
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LadyGrey what happens with drainage? Do we all have to deal with that? I will be having a right breast mastectomy in about a week. Don't know what to expect!
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LadyGrey I'm wondering if the itching isn't more the prep we get previous to surgery. They have a solution they put all over that is suppose to keep staff from happening. One friend I have broke out in rash everywhere they put it. benadryl and cortizone cream. Sad to hear your going through the added problem and more so that you've had to take this ride with the rest of us. Glad you've passed through the surgery and are the other side.
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I just had delayed reconstruction on Tuesday 10/25 lat flap and expander on radiated side, expander only on prophylactic mx side. I got home yesterday and in the evening had a horrible bout of itching after taking my pain meds. I've had this before with narcotics- seems worse for me with Percoset, less a problem with Vicodin. I took an antihistamine and this morning my PS called in a new prescription for Vicodin. So far no itching tonight.
Side question; normally I'm a very active person but I'm still barely getting up off the couch other than for trips to the bathroom and drinks of water. My mastectomy surgeries a few years ago barely set me back at all- nothing like this. How have others found the early days following reconstruction? Having a nice time reading knitting blogs and watching "Madmen" at least0 -
First post. New at this. I am going to have a UMX, no reconstruction, on this Wednesday. Pretty darn scared. At the preop testing I was given instructions to buy Hibiclens at CVS etc. For all the folks wiping down the room, you need to wipe yourself down.
The evening before I am to shower with this like any other soap (except face and genital area)...wash whole body. And the morning of surgery....repeat. (no lotions, deodorants, powers etc)
Seems like something you should do even though your hospital may not have told you to.
This particular thread has been a huge help. Thanks everyone.!!
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paige-allyson - so glad your itching's better - I have heard of SO many women getting itchy from narcotics! And yes, the reconstruction will sideline you - women who have MX/BMX w/o reconstruction are MUCH quicker to rebound. I was super active, worked out 7 days/week, in great shape before my 9/19 BMX w/immediate reconstruction (saline implants + Alloderm) and it wasn't until the 4 week mark I felt like I was up for any sort of exercise. Now starting my 6th week post-op, I'd love to exercise but still have arm restrictions and when I power walk at all, even (a fraction of the workouts I used to do), I swell way up which is a no-no for recovery. Slow and steady wins the race here - hopefully you'll come back quickly and love your reconstruction!
Sprinkles - I was scared out of my mind about surgery, and although this has been no picnic, I will tell you that for me, the anticipation was the worst part. I hope it goes as smoothly as possible for you and that you're back on your feet more quickly than you can imagine.
Sarah
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Sarah- thanks for the input. I figured but it's just so weird how different it is the after my mx surgeries. The first was rougher 1) because of the cancer news trauma and 2) because of the total lymph node dissection, but I was taking little walks outdoors within a couple of days. With the 2nd (prophylactic) I went out to lunch the next day with my husband and daughter.
Right now I don't feel terrible- so long as i do the pain meds- just tired and can't move very easily.
I'm exercising by lying on the couch knitting Thank God the switch to Vicodin seems to have done the trick; no itching! I'm already liking the cosmetic results and I'm not even done yet. Even TEs are an improvement over the "chest wall" look I've been sporting these last few years.
Sprinkles- I was so scared before my initial surgery but it really wasn't bad at all. Looking back on the first year after diagnosis my worst problem was the anxiety of finding myself in this new "world" that I didn't want to be in but was stuck with. I wish you smooth sailing through surgery and recovery.Good that they have you use the Hibiclens- seems like not every hospital does- good sign when they do. Don't hesitate to PM me if you have questions I can help with. Suddenly I have all this time on my hands which is pretty nice actually.0 -
I am still in shock after dx. Need so much more info, but brain can't absord. I chose to have double mx after last week was diagnosed with .9 cm left breast cancer, -my big fear is if it got to lymph nodes, my mother had breast ca in 1970's b4 chemo therapy i guess - i am 64 but immature! and chose bl mx just to keep reoccurance to minimum. did not want to have lumpectomy and then worry, picked up camisoles today. lady at dr. told me to sleep in them, because of drains. i am clueless as to what else i need to get, pj bottoms?, am only in hosp. for a day. i am clueless as to what to pack, what to expect, what to wear at home, and how long will i be at home b4 i can go out? i know i cannot shower, ugh, will i be able to wash hair in sink? i have lots of questions, that i should ask, but this is my first experience.... surgery is in 9 days.
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I had mx and double DIEP reconstruction on Oct 19. I reacted to the adhesives and something else.... who knows what it was. Like Jazz, I also suspect the prep wash. PS suspects the antibiotics and the narcotics. So the adhesives, the wash, the antibiotics, and the narcotics....it's a massive allergenic coctail! I had a itchy, blistery rash all over my torso; only today, after a week and a half on zirtec, benedryl, and topical steriods it is finally gone. Next time I go into surgery, I will ask to have Benedryl given to me in surgery if the surgeon insists on using tape and glue (and the wash).
On the subject of what to sleep on after DIEP, I rented an electric recliner from rentacenter per suggestions in this thread. Unfortunately, in the reclining position my feet hang over the end (I am 5'10) which I didn't find comfortable. I ordered it over the phone, but I should gone to the store and sat on it first! I am now sleeping on our chaise lounge with lots of pillows until I get the go ahead to lie flat.
Good luck to all of you who are getting ready for surgery. Most suggestions on this thread are really helpful!
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Ladies, I compiled a comprehensive list of pre- and post-surgery essentials on my blog, but wanted to share I was never told (despite 4 surgeries and another coming up Dec. 1) to use Hibiclens. And this is the 2nd time today I have read about someone using it! Interesting that it can create an allergic reaction in some women. If you tend to be sensitive to adhesives and lotions, I'd check with your doc before using. I am gonna try it. Thanks for the tip ladies. (Always something new to learn...!)
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Great list Rennasus, thanks! I love your blog, too.
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Kathe - so sorry to hear about your reaction! I can relate - I was allergic to something I got systemically (anesthesia drug? narcotic?) and had a head-to-toe massively itchy, blistery rash for 2 weeks. It was torture - the BMX was secondary to the rash discomfort, in fact!! One suggestion my docs had that I am going to do - get an allergy workup at some point, so that you might be able to track down the cause. Then you can avoid it when next you have some procedure.
I used Hibiclens too - good to test some on your body on a small spot beforehand - I am allergic to a lot of preps and washes and am not allergic to Hibiclens, thankfully . . . .
+1 as a lover of Rennasus' blog!
Sarah
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