Sunday, February 1, 2015

Helpful tips from friends, readings, and personal experience


I thought it would be nice to have one post with all the helpful tips I've picked up along the way.  I'll keep editing it and maybe (if I can figure out how) keep it pinned to the top of the blog.  In compiling the initial info, I went back and read all the comments on all the Facebook posts since I made my diagnosis public.  Wow!  The tears came back...  I have not a doubt in my mind that my recovery has gone so well because of all the people who have my back--worldwide!  I'm glad I decided to go public, as the love, support, and helpful tips :) have definitely helped.

(if any of you have additional suggestions, or ones I missed the first time through, please let me know and I'll add them)

So here they are, roughly categorized:

General:

For night sweats, instead of cotton, wear lycra (less cold); keep spritz bottle of water, alcohol and lavender essential oil to cool self and sheets; refined sugar increases night sweats; try lysine supplements

For nausea: ginger tea, mints/mint gum; eat small meals throughout day; eat before you get hungry--even just a bite here and there; if you wake up nauseous, eat dry food before getting out of bed (try ginger snaps!) and try to eat a high-protein snack before bed; rest; get some fresh air; avoid strong odors; drink fluids between meals, not with meals; 

For fatigue: pace yourself; rest when you start to feel tired or notice signs of fatigue; delegate, delegate, delegate!  do what you can to manage stress, as it contributes to fatigue; exercise, even if just taking a walk

Yoga is a great way to recover and exercise post-surgery; many hospitals have programs specific to cancer patients/survivors



Pre-surgery:

Measure your arm circumference to have as a baseline for lymphedema afterwards

Cook some of your favorite meals to have in the freezer

Buy your favorite beverages so it's easier to hydrate when you get home

Get shirts that button/snap/zip up the front (can't raise arms after surgery)

Get soft, front-close sports bras (I actually couldn't find any, but they would have been nice) OR loose camisoles with built-in shelf bras; the compression bra they give you in the hospital is horribly uncomfortable

Have lots of pillows of different sizes and shapes to help get comfortable after surgery


Post-surgery:



Lots of ideas for what to do with the drains, and people like different things:  camisole with pockets to hold drains; Hoodie with pockets for drains; fanny pack for drains; wear an old men's tie and pin them to that; (I had so many drains that I couldn't fit them in pockets and had to pin them to my camisole but it was more comfortable when I pinned them higher, looping the tubing through the BIG safety pins

Do post-surgery stretching exercises in shower, with warm water loosening things up.

Use forced touching/pressure to deal with hypersensitivity post-surgery

Bellaruth Naprastak has some nice post surgery recovery guided imagery audios

Much easier to sleep/get comfy in a recliner the first week or so

Stay on top of constipation prevention (easier to prevent than fix):  Stool softener, milk of magnesia, Miralax (try in warm cider)

Percocet can cause itchiness; use benadryl to counteract it

Find a way to spend some time reclined with the lymph-node impacted arm above your head each day to prevent swelling/pooling of lymph

Pre-chemo:

Purchase an eyebrow pencil while you still have eyebrows so you can match the color, because they will thin as they fall out

Sucking on ice chips or popsicles during chemo can help with nausea and mouth sores; if no mouth sores, suck on sour candies;

Use aquaphor lotion throughout

Things to bring:  Cozy blanket, Bottle of water, Snacks, Tissues, Mints for when they flush the port, Gum, Magazine, book, journal, ipad for watching Netflix, movies, music, etc., Earphones, Socks

Wear something comfy and easy for them the access the port

Chemo is constipating.  Prevent it: stool softeners starting 2 days before; bran muffins; drink lots of water

Post-chemo:

If unable to eat solid food, drink Ensure

Ask if you can have IV fluids given ~2 days after chemo (even along with the Neulasta shot)

Watch youtube videos to learn how to tie/wear scarves

If you get mouth sores, the pharmacy can make a "Magic Mouthwash" to help

No matter how tired you are, some exercise will give you energy

Several people have said that Claritin helps with the bone pain after Neulasta shots




Pre-radiation:

Purchase (or find someone who makes) lotion that is gentle, alcohol- and scent-free


Post-radiation:

Aquaphor lotion and aquaphor lip therapy work well

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