Tips, Tricks and How to get through this Chit!
After talking with several members and asking questions, someone mentioned that it would be nice to have a tips thread. So here it is. Here's a few basic things for you to consider and please add any tips that worked for you. As BC sisters, all the help we can give each other will make the trip a little easier.
- Always take someone with you to appointments. 2 sets of ears are better than one. And you won't think your crazy because you heard something that the doc swears they didn't say!
- How to get out of bed or chair;
- Taking pain medication does not make you weak--everyone reacts differently to different pain medications--if you are still in pain on medication, you need to have the medication adjusted/changed;
- If you can, get a baseline hearing test, sometimes chemo can affect your hearing.
- get your vaccinations up to date, flu shots, pneumonia shot, shingles shot.
- Pillows to buy;
- How to wipe yourself after toileting;
- Best clothing choices;
- Bras that fit TE's;
- Sleeping positions/locations;
- Physical therapy works wonders.
Here's a link to the constipation thread: http://community.breastcancer.org/topic_post?forum_id=6&id=781867&page=1
Here's a link to wound care: http://community.breastcancer.org/topic_post?forum_id=44&id=754935&page=1
The topics are not limited to those above. Please feel free to add something that you think would help others. I think if you enter the topic, bold it, then type in your suggestions, it would make it easier for others to find what they might be looking for. (Hope that makes sense.)
Link to board survey for Pinktober.
https://community.breastcancer.org/forum/102/topic/791442?page=55#idx_1628
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Pillows: small pillows, about 6" x10" work great for support under your arms after surgeries. Also for comfort when you can sleep on your side before the drains are removed.
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getting out of bed or chair: I used a thin blanket laid out behind me that allowed my helper for the day to easily leverage me up so I didn't have to use my arms to push up. They just pull on the blanket, towel or sheet. A recliner really helps too.
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Great idea, Smaarty, thanks for starting this!
After surgery, wore DH's button up the font shirts. Easier to get in and out of. Also. A big, old fashioned diaper pin thru a buttonhole to attach drains.
For sleeping on the recliner: either a large flat or fitted sheet to go on top of the recliner, so much more comfortable.
Keep a small, soft pillow in the car to place between the seat belt and your chest. If not, I found a bath towel folded up also works.
When I could finally sleep in bed, I took a wooden chair and placed it with the back against the side of the bed near my arm to pull myself up, like the bars on a hospital bed .
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For Dry Nose I used AYR gel with aloe it really helps with the crusties. Walgreens has it I believe.
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Washing off chemo laden urine after peeing to prevent burning - get a sports water bottle with those pull up tops. Fill it with room temperature water and keep it near the toilet. After peeing, take the bottle, pull up the top and squirt water all around between your legs to be sure any chemo tainted urine is washed away. Blot yourself dry gently with toilet paper. Doing this makes a big difference.
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From the PS: "When you get home (from BMX) pretend you are a T-Rex. NO ARMS!"
Got out of a chair by scooting my butt to the edge, folding my arms across my chest, and assuming the "nose over toes" position they teach patients getting out of wheelchairs. Changes your center of gravity; easier to stand up that way.
I rented a fully-electric, adjustable hospital bed for my BMX recovery. It came with an over-the-bed table. Made it VERY easy to get in and out of bed, and saved my back in the process, since I am not usually a back-sleeper.
Wore satin jammies in order to move around better in bed.
Kept my bedside water in a toddler-sized sippy cup. I could lift it, and it wouldn't spill.
ALWAYS wore a clean, step-in stretchy camisole over incisions every night. Less rubbing on the pjs, and didn't bunch up like bras did. (Not the expensive mastectomy ones. Just used a diaper pin for drains, like 2nd_time_around.)
Never slept in camisoles, bras, pjs, unless they were freshly laundered. In fact, anything that came in contact with my incisions - like a bath towel - was always freshly laundered.
Best bras: zip-front sports bras from JCPenney, step-in, stretchy, loose nursing/sleep bras from Target, and my favorite - GENIE BRA! Make sure they are large enough to accommodate swelling from BMX. Wore these all through fills - they adjust to any size.
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Hi you guys! Good idea Smartypants! Who knew!
Okay blessings.... the zip-font bras from Penney's..... are they underwire? I can't wear ones with the wires, in fact I have taken the wires out, but hard to find a bra that fits right, and it is so hard to twist arms around to fasten the ones in back.Also, is it more comfortable for you gals to sleep with a body pillow, to rest your arm on that? Along with your leg?
AndI made a "pillow" out of "foam" ..... (like sponge) about 8" square, and cut a circle hole in it, then covered it with soft fabric, to lay under the drains/tubes I had with my MammoSite Device. That way I could lay on that side, without hurting.
Hortense.... Good idea! I mean we could use that to clean up, ANYway! I have always used baby-wipes.... (the small ones) just to help clean up....
I read where some of the UTI's we get, come from wiping the wrong way? Probably best not to use the water bottles taken out of frig?
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So many good ideas--personally I would use a lot of lotion on u'r body cuz dryness comes quickly later and downsize u'r purse if u carry one.
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I love my body pillow. I had it way before bc, and after surgery I was sleeping on my left side almost immediately.
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TAKE THE STOOL SOFTENERS!!!! Trust me on this.
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Oh plenty of water and chapstick.
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Chevyboy - it was a full-coverage, zip-front sports bra, by Underscore, at JCPenney. The cups were sized, but almost flat until you put it on. It had wonderful compression and support, yet didn't bunch up, and was really comfy to sleep in thanks to the racer back.UNFORTUNATELY - I just checked, and I don't think they're available any more.
They do carry front closing bras, though....
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I do remember ordering all my hats and scarves and wig before I lost my hair, cuz I had presence of mind to really like what I ordered instead of waiting and then u get anything, I had hat with big pins on them fun stuff and big earrings, and I did order a nite cap, my cousin told me too and in the winter it really helped a lot. I never would have thought of that. But when I did loose my hair I was ready, cuz the first 4 months of chemo I worked as much as I could so I wanted cutsy things for that. Then after I only wore things at chemo or when I had to go out. I didn't like button things so I had zippered tops.
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See a CERTIFIED LymphEdema Therapist as soon after surgery as possible. Not to be confused with some PT that claims to 'know all about LE". This will give you a baseline and get good education on what LE really is and what to be watching for and how to try to prevent it. There are some PTs and OTs who are also CLETs but not all are.
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This will probably not apply to everyone, but it sure did to me---I bought the no Rinse Soap--which was great when not allowed a shower- it really soaps up on u'r body and cleans well, then u just wipe it off with a towel--they have the shampoo too, suds galore then u dry with a towel--good to have handy.
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SUGGESTIONS FOR MASTECTOMY PATIENTS:
SIZE OF TISSUE EXPANDER IS IMPORTANT AND RELATES DIRECTLY TO FUTURE IMPLANT SIZE: Visit the thread "Breast Implant Sizing 101" under the Breast Reconstruction topic, grab a cup of tea, and do some serious reading. The width of the tissue expander used at the time of the mastectomy will determine/limit your choices of implants. Look at the implant sizes in the catalogs for the different implant manufacturers (the links are posted at the top of the thread). Make sure that you clearly and firmly communicate your sizing deisres with your plastic surgeon. Question the plastic surgeon on tissue expander brand and size he/she has planned for you. Compare the width of that tissue expander with the implant you desire to see if they are very close in width. If not, discuss the discrepancies with your plastic surgeon prior to your mastectomy. The maximum volume of the tissue expanders is also important but there is a little more leeway with volume than width.
PILLOWS: At the time of my BMX, I received two pillows in the hospital which were donated by a local quilting club. They were called Pink Ribbon Pillows. I still sleep with them today. They are cylindrically-shaped, like bolster pillows, and are about 15 inches long and 13 inches in circumference. They fit nicely along my sides under each arm.
BRAS THAT FIT TISSUE EXPANDERS: No Boundaries brand bra purchased at Walmart for $4.99. Very stretchy nylon/spandex with removable foam cups. They come in lots of colors and are extremely comfortable. The foam cups will help give you some shape. I still wear these after my exchange. They look like this:
BEST CLOTHING CHOICES: After BMX and especially if having lymph nodes removed, it will be very difficult to put your arms over your head to pull on type of shirt. Get some shirts that button up the front for the first couple of weeks.
SHOWERING/BATHING WITH J-P DRAINS: My PS told me that I could not shower until the drains came out. Well, I could not stand myself after a couple of days! I was smart enough to have installed prior to my surgery a hand-held shower head. I put a couple of bath towels on the edge of the tub and leaned over into the tub and my dear husband washed my hair for me by using the hand-held shower head to wet/rinse my hair. In order to shower, I tied a long clean shoelace around my neck, took off the surgical bra, and attached the drains to the ribbon with safety pins. I was then able to use the handheld shower below my boobs to lather, rinse, repeat, repeat, and repeat (OMG--I never thought a shower could feel so good). I had my husband soap up my back and shoulders and then wipe them down with a dampened washcloth. I felt 100 times better after this!
TOILETING: I wish someone had told me to practice wiping with my left hand prior to my BMX. I had lymph nodes removed on the right side and couldn't reach where necessary for about a week with my right hand.
FINGERNAILS: I am not sure if it is due to Herceptin or Tamoxifen but after taking these drugs for about six months, my fingernails began splitting, flaking, and breaking all the way back past the edge of my fingertips! I started using OPI Nail Envy Nail Strengthener which goes on like clear nail polish, although it actually appears milky white in the bottle. It seems to be helping and my nails are now starting to grow past my fingertips but I continue to keep them as short as possible.
SEATBELT DISCOMFORT: My son purchased seat belt adjuster clips at Pep Boys which allow the shoulder strap on the seatbelt to be positioned more comfortably. They were about $5 for a pair and look like this:
STOOL SOFTENER: As mentioned above, just take the stool softener. It is not very expensive to purchase prior to surgery, however, I received a prescription for it upon my discharge from the hospital. Also, have some Milk of Magnesia on hand and take that as well once you get home from the hospital. All the fluids the hospital pumps you with will make you feel bloated. All the pain meds and anesthesia will make you constipated. Need I say more?
STRAWS: Purchase some "bendy" straws prior to your surgery. It will make it much easier for you to drink in a reclined position once you are home.
PHYSICAL THERAPY: As soon as possible (within four weeks post mastectomy), get a referral for physical therapy, especially if you have had lymph nodes removed. It will work wonders with range of motion and alleviates discomfort.
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Diaper pins (for pinning up drain tubes) are still sold at Babies R Us. I looked all over until I finally found them there.
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Just checked Walmart's web site, they sell them in store and online
Another life saver has been my heating pad. I carry my stress in my upper back so I found the heating pad in the lowest setting for my back eased my muscles. It also has the feature to stay on (my other heating pad automatically turns off after an hour). Check with your BS and PS about this
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2nd I've iced myself in areas, well this weather I'd think twice about that--but when I've had a headache.
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Cami, for hot flashes, I have used a Frogg Togg around my neck.
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Oh good idea, except what is that ????
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it's a special cloth that doesn't drip water (on the order of the As Seen On TV Sham Wow). Got it at Bed, Bath and Beyond. I'll try to google it
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Maddy I know what u mean, Ive seen it, I didn't know the name--good idea really, I don't get as many cuz I'm older, but they started up again now. and U know what else started I REALLY need deordorant now, for a while it didn't matter now it's really weird. and I need good stuff.
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hot flashes - I get them for a while and then I don't. I was sleeping with only a light blanket, even tried sticking a foot out under the covers. Both have worked. Have also noticed lately, I had some heavy blankets on and I actually got a more restful sleep. Go figure. Will do almost anything for a good night's sleep!
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I know cuz it screws up the whole next day, never fails---
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*If you're up for it and if your doctor of the moment okays it, walk. Even if you don't feel like doing it there's a pretty good chance you'll feel better as you're doing it or after you've finished doing it.
*Try to eat plenty of protein during chemotherapy. TonLee from the Triple Positive thread stressed this and I think it really helped me get through those long months of chemo. I also took her advice and got quite a bit of my protein from Fage 0% Greek yogurt. I still consume it on an almost daily basis in my morning smoothie.
*Inexpensive ski caps / toboggan** hats were my go-to headwear item. Sometimes I wore a halo wig underneath and sometimes I just wore the hats with big earrings. I started chemo in January and the 99 Cent Only store had ski caps in just about every color of the rainbow. They were comfortable to wear and kept my head warm.
*Claritin helps with the pain associated with the Neulasta shot.
*Sally Hansen Hard as Nails and dark polish helped me keep all my nails. I followed SpecialK's protocol on this.
*Alcohol pads work well for stripping drains (I can't remember who suggested this - it might have been Moonflwer).
*Acupuncture helped me get through the last two or three chemo treatments.
*I'm not sure if this works or is feasible for everyone but we ended up scheduling a trip for about three weeks after chemo ended. Perhaps it was too ambitious of a goal but I was definitely able to go and looking forward to that trip is what helped me get through five out of six treatments. It doesn't even has to be a trip, or it could be a one or two night getaway, but something you put out there that's a goal beyond the end of treatment can help focus on a point beyond chemo and it encouraged me to try to do as much as I could to stay active during treatment.
*If you're doing Herceptin consider having them run it for an hour versus the 30 minute norm. There are lots of posts about that here at BCO.org.
**my friend in Canada calls them tuque caps
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Great ideas, Lee!
My best piece of advice: accept help. Whether it be in the form of having meals made by friends, offers to do housework, provide child care, or massages, let others help you as you feel comfortable. You have enough to do healing, let stuff go.
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This is by far not a medical thing and it might be silly--but set aside just 15 mins a day where u totally relax , with music, aroma, something u really enjoy and do not think of cancer, take some deep breaths nd let it out slowly and let u'r mind wander to all that is good .Move u'r shoulders up and down and back for a few of those minutes--
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camille, what you just described was one of the "prescription" items from the integrative physician at the Disney Cancer Center. She used the word meditation but really, anything that takes the mind off it (as you described) is a form of meditation. I will add that it's the one thing I've not yet been able to accomplish. The other items on her list were supplements. Those were easy to add (just pop another pill) but clearing the mind of this stuff for 15 minutes is excellent advice!
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Lee Thank you and I say that because I do do that and some people think WTH is that going to do, u still have cancer, but I think freeing u'r mind of worrying helps u'r attitude for what' happening to all of us. One time toward the end of my treatments after 2 yrs, my Dr. said to me--the meds did wonders (chemos) but my attitude did the rest, and I believe that, It's not a cure all, but it just relaxes u'r stress and soul.
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