Most of us need insurance, money, and love to make it through cancer. But what about the smaller, less conspicuous items that helped you through the medical and physical challenges of surgery, chemo or radiation?
On my blog I often write about the emotional impacts of cancer, but today I’m all about the practical physical side. Most patients discover small must-have items, clothing, food, or paraphernalia that helped us to physically manage daily life. Here are mine:
1. Zip-up hoodies – I couldn’t lift my arms over my head to put on a shirt after surgeries for thyroid cancer
2. Paper cups and straws – During surgery they dug around in my neck and shoulders. So sore in that area, I couldn’t lift a glass or mug to drink but paper cups and straws saved the day.
3. Pillows – A mountain of pillows, even big couch cushions, were great for propping me up in bed and taking pressure off my neck.
4. PB Sandwiches – Unable to eat packaged or restaurant food while on a low iodine diet (pre- radio-active iodine treatment), a friend baked loaves of no iodine bread and I popped zip lock bags of peanut butter sandwiches into my purse whenever I left home so I wouldn’t be stranded without food.
5. Friends’ Old Clothes – There are strict protocols for washing clothes after radio-active iodine treatment because sweat makes them contaminated. Friends gave me five days worth of old comfy clothes they would have donated to Goodwill anyway. I chucked them in the trash after wearing them. No laundry and no clothes with bad memories.
Pick your top five items (or more if you’d like) and leave them in the comment section, noting the kind of cancer you have and what your treatment or surgery was. Don’t worry if someone already mentioned one of your favorite items – duplicates only reinforce how necessary and helpful the item is.
For more practical tips on coping with cancer, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.
“Everything Changes is, without doubt, the most forthright, emotionally sophisticated, and plain-old valuable book of its kind I've seen.”
January 6th, 2010 at 6:37 AM
I had Hodgkin´s Lymphoma, and had surgery on my neck, 4 months of chemo and radiation. Here´s my top five:
6. A blanket, because hospital blankets were icky. Not your favourite blanket, though.
7. Loose-fitting clothes, like you, because I also had trouble moving my hands, since I got chemo through an IV, and ABVD can really destroy your veins. I would also recommend asking for a port, to avoid the pain. I never wore the clothes I wore in the hospital again.
8. Lots of chewing gum, to help with the nausea. Candy also works. Even sucking on a slice of lemon worked for a bit. Don´t buy your favourite candy or gum, they will always be chemo-flavoured after treatment.
9. Books, and then music, to distract myself. I couldn´t concentrate or hold up the books after the first few sessions, so the music player helped.
10. I took a lot of plastic bags, for the ride home after chemo and even for the hospital, in case I needed to throw up and couldn´t find a basin immediately.
11. A good old fashioned hand kerchief, to cover up my nose, because the way my hospital smelled made me nauseous after a bit. This helped when I went back for my check ups after treatment, too. A drop of some soothing perfume, or eucalyptus oil or something on it also helped me.
January 6th, 2010 at 9:16 AM
I had rectal cancer, the treatment of which involved the holy cancer trifecta: radiation, [abdominal] surgery & chemo. My top five items for getting through treatment:
12. A snuggly blanket for chemo. Even though I had my treatments in the summer, the AC got jacked up pretty good.
13. Slip-on shoes (which turned out to be those horrible Crocs, which turned out to be a life saver, what with the chemo-induced peripheral neuropathy and all).
14. An eye mask for post-surgical hospital stays. Those nurses *love* to swing open the door and turn on the lights to take vitals at all hours!
15. Quality TP, wipes, and diaper ointment for my tender bum post-ostomy take-down.
16. A good snow shovel. I was diagnosed at the beginning of a winter that delivered a record-breaking amount of snow (>100″) and had to make the daily drive to radiation for six weeks. It was crazy-making, but directing my cancer-rage at Mother Nature helped temper my cancer-fear somewhat. ;)
17. The real #1: my mom, who dropped everything to help us through the worst of it. She is a saint.
January 6th, 2010 at 9:53 AM
I have thyroid cancer, and have had two surgeries and two radioactive iodine treatments (therefore way too many months of the low-iodine diet). My must haves:
18. roasted chicken, plain oatmeal, and frosted mini-wheats. all of these have no iodized salt, and therefore were perfect for my diet…plus lots and lots of fruit.
19. a little pillow given to me by a family friend that fit perfectly under my neck to provide support (the only possible way for me to sleep)
20. lots and lots of magazines…USWeekly, People, Shape, Self, Real Simple, InStyle…i couldnt read for long, but it certainly was a good break from the daytime hours of TV. There is absolutely nothing on between 11 and 4.
21. flavored water…I had NO interest in any other kind of beverage. even ginger ale made me nauseated.
22. ice packs. I was SO swollen and so worried that since all of my lymph nodes were removed the swelling would be there forever! i was OCD about it.
23. I echo Brigida’s post- my mom is absolutely a saint, and sat with me every day in the hospital, cooked me food and left it for me at the edge of my room when i was radioactive, and painted my toenails for me when i was stuck lying down for long periods of time. she’s the greatest…
January 6th, 2010 at 11:37 AM
I have non Hodkins Lymphoma and am finishing up chemo in two weeks. yay
24. Yoga pants and hoodie for chemo, i wear the same thing every treatment so I can curl in the chairs
25. Mineral water by the case it’s the only drink that tastes good, lemon/lime or plain.
26. Great books from friends, I have a Sony E-reader now so I always have a book with me. However, when the drowsy meds kick in during treatment you’ll need music to zone out. I’m from Austin and Bob Schneider seems to get me through each treatment.
27. A Buff headband (I have 7 now)- these are great for when you lose hair (or partially like I have) you can wear it as a headband, hat, or tie it like a bandana - it’s the best for chemo to cover up some of the patchy hair loss.
28. Pictures of my kids, seeing their smiley faces makes me want to keep fighting.
29. Echoing the mom and adding the husband. Having someone cook and take care of you makes all the difference
January 6th, 2010 at 12:54 PM
I have rectal cancer and underwent rectal surgery in September 2009. The hospital stay wasn’t long, but it was extremely uncomfortable. I continued to recover at home for several weeks. Here’s what helped:
30. Hello Kitty Pajamas and Mickey Mouse ears: My dear friend Claudia brought these to the hospital the day of my surgery. I couldn’t wear the pajamas right away because of the catheter, but once that was gone, I climbed into those PJ’s immediately. They made other patients smile when I was roaming the halls on my 5 daily trips out of bed, and the Mickey Mouse ears impressed my surgeon. Basically these two things put smiles on the faces of everyone I encountered, and that helped me feel better.
31. Meditation CD’s: My ex-boyfriend and his wife (both saints, she’s a breast cancer survivor) sent me a lovely set of meditation CD’s which helped me relax in the days leading up to my surgery and now help me maintain some sense of peace. I used them in the hospital with a portable CD player, and they helped block out all of the noise that made it so difficult to sleep.
32. Flowers: I love flowers. They brightened up my hospital room and my home.
33. Chocolate Pudding: Once I was home and trying to eat again, I was craving chocolate pudding. Yummy and easy on my battered digestive system.
34. Get Well Cards: Handwritten get well messages were so meaningful. They usually brought tears to my eyes, mostly because I was so touched at how much kindness came my way, sometimes from people who I didn’t even know that well.
35. Massages from my sister: My sister came to Boston from California and lived with us for a month after my surgery. Every night, before bed, she’d give me a long and soothing massage. I had severe back pain from lying down so much and from all of the digestive issues that come with having rectal surgery. My sister’s magic gentle hands saved me.
January 6th, 2010 at 1:21 PM
I was diagnosed with Stage IV Ovarian Cancer in June 2007. I had surgery, radiation and months of chemotherapy.
37. Pants with elastic bands - I was so swollen from surgery and steroids I could not fit into other clothes.
38. Zipped sweatshirt and v-neck shirts for chemotherapy for easy access to my port
39. Barf bags. My friends collected them from airplanes and they were invaluable on trips to and from chemo
40. iPod - Listening to my favorite music got me through chemo treatments.
41. Vitamin Water - I always had a metallic taste in my mouth and did not like to drink plain water. Flavored water was the only way to keep hydrated.
42. My teddy Bear. I curled up with him whenever I felt sick, alone or just needed a hug.
January 6th, 2010 at 1:39 PM
Addendum: I got that Keep Calm and Carry On poster for my daughter’s nursery shortly after she was born, which was about 4 months before my diagnosis. That poster was a life saver during those 2am feedings and crib sheet changes when I was so bone tired from chemo I could barely pull the sheet over the mattress.
I got a Now Panic and Freak Out shirt (http://typetees.threadless.com/product/1466/Now_Panic_and_Freak_Out) for treatments and am thinking about getting a mug and ornament from Decorative Things (http://www.decorativethings.com/keep-calm-and-carry-on.html), and maybe a pendant…and a bumper sticker… ;)
January 6th, 2010 at 2:08 PM
I had non-Hodgkin’s (Burkitts) Lymphoma, and I too had neck surgery. I was lucky enough to undergo two cycles of chemo, but it had to be done as an in-patient, so I had two lengthy hospital stays.
43. Cheap, plastic flip flops for the hospital showers. I threw them out before coming home.
44. A journal, to write down my experience and pass the time during my lonely hours at the hospital.
45. A laptop. Another big time filler.
46. A camera. To document things like shaving my hair off after it was starting to fall off in clumps.
47. Home cooked meals. I was lucky enough to have visitors like my mom, dad, husband, siblings. If they weren’t bearing home cooked meals, it was usually a fast food restaurant favorite.
January 6th, 2010 at 2:36 PM
THYROID Cancer sept 2009
48. Lemon drop lozenges for dry mouth
49. A “U” shaped ultra soft travel pillow : Holds your neck comfortably and allows you to sleep in chair recliners or bed without waking with VERY stiff neck. ( I found my neck muscles were very sore after extensive pronation during surgery for hours.)
50.Frozen bags of peas, soft cloth to wrap= instant reusuable ice pack for all sorts of muscular or inflammatory ouchies.
51. A Blender: sometimes nothing is better than smooth, cold and soothing to drink, and you can add what works for you.
52. A Trip to Goodwill for outrageous clothes that make you laugh and are comfy, but you can THROW away after treatment isolation( RAI) or whatever. You won’t want bad memory clothes anyway so go nuts: BE OUTRAGEOUS. Who is going to see them? Get the LEOPARD PJ’s!
January 6th, 2010 at 2:48 PM
I had stage one grade three invasive ductal carcinoma breast cancer
lumpectomy, chemo, radiation.
53. Spaghetti and olive oil with spinach. Post chemo meal for when nothing else tasted good
54. IPOD. Drowned out the noise of the radiation machine
55. Do-rag and baseball caps. It was the middle of winter when I was diagnosed and I am not a wig person so I put those on.
56. Televison. To watch during treatment at the hospital and while recouperating. I had the center ice package because I love hockey and this started my addiction to The Biggest Loser
57. My cat Rocky. Obviously my fiance was taking great care of me but Rocky knew exactly when I needed him. Post surgery when I slept on the couch because that was the only comfortable place for me to sleep, he slept on the couch with me the whole time.
January 6th, 2010 at 2:57 PM
Another lymphomaniac here. Surgery and chemo. Feh.
58. Fluffy yet dignified socks. No monkey faces, please. Just warmth.
59. Portable music w/headphones.
60. Household help. My fabulous sister sponsored Merry Maids for several months. A Godsend.
61. Moleskine notebook and nice pen. For thoughts, fears, dreams, onco visit Q&A, and anything else you don’t want lost in a fog of chemo brain.
62. Didn’t have it back then, but Lord, it would have been fantastic to have a Kindle! Seriously, life-changing, fan-dang-tastic. All the reference books, novels, poetry, plus you can make notes on it.
Plus I wholeheartedly second Ellie’s Leopard PJ suggestion.
January 6th, 2010 at 3:36 PM
A couple of things that I will always bring with me on any hospital stay
63. My own socks that can be thrown away. For RAI treatment I had to throw them away, but most people have a pair or two in their drawer that they don’t like or that don’t match so it’s not a big deal to throw them away.
64. My own pajamas. Next RAI treatment I’m going to bring some that I can throw out. I did not like wearing the hospital gown all day.
65. DVDs and books. I had a friend burn a couple DVDs for me and I read some old books that I could throw away during the RAI.
66. Alone time(I know this isn’t a material item, but still). Having to ask my mom to leave me alone for at least an hour was difficult because she wanted to stay with me in the hospital all the time after my thyroidectomy, but I really just needed some time to myself. I was able to ask her nicely to leave me alone and it helped me feel more calm and relaxed.
67. My stuffed animal Grumpy. I didn’t realize that I wanted my stuffed animal with me until my boyfriend brought him to the hospital the day after my surgery. It was really comforting and a much appreciated gesture.
January 6th, 2010 at 3:37 PM
I forgot, I have thyroid cancer. Diagnosed in Sept. 2009…
January 6th, 2010 at 4:12 PM
I was diagnosed with Stage IIc Ovarian Cancer and Stage Ib Uterine Cancer in November 2004. On 11/30/2004 (my hubbys birthday) I had a hysterectomy (TAH/BSO) and was cut from above the belly button down to my pelvic bone. I had chemo from 12/2004 through 04/2005.
68. Palmers Cocoa Butter Sticks – My lips are constant chapped so this is always by my side. As a matter of fact I carried one into the operating room and I got it back after surgery in a specimen jar – LOL
69. My “Smushy” tummy pillow – My mom-n-law gave me a pick micro bead pillow the day after my surgery. If you have ever had abdominal surgery it is a MUST to use a pillow or rolled up blanket pressed against your tummy if you cough or sneeze. It also served as a protection barrier against my sore cut up tummy. After surgery recovery this pillow cane to every chemo treatment and I used it to rest my infusion arm on. I still have it and love that pillow!
70. My “Blankey” – I had my chemo from December through April and I bought myself a fleece covered down throw to take with me to chemo. My best friend had just started dialysis at the same time I started chemo and I bought her one as well. I still cuddle with my “blankey” and I now have my friends as well. Her mom gave it to me after she passed away 4 years ago.
71. Sweatpants, leggings, hoodies - Any pants that had an elastic waist. Like Alli mentioned, nothing fit due to the swelling from the surgery and from the bloating from the steroids. Hoodies make it warmer when you are bald in the winter.
72. My iPod: It was my companion at chemo even though my hubby or mom n law would be there and there was TV it was hard to concentrate on watching TV, read a book (only had one available hand!)or carry on a conversation with the Benadryl mix I got so listening to music helped pass the time.
73. My Orange/Cranberry juice: This was my drink of choice especially during my actual chemo treatments – Hydrate, hydrate, hydrate to get that poison out of you as quickly as possible!
74. Lemon honey sucking candies: Helped with that horrible metallic taste from the chemo
75. My hubby and family: for being there through surgery and chemo and doing all the things I could not do!
January 6th, 2010 at 4:42 PM
77. burt’s bees chapstick
78. really luxurious feeling face lotion
79. your own cozy pillow
80. a journal (keep track of your meds, mistakes do happen :)
81. a camera to capture your time in the trenches
82. definitely a mom (and/or a husband :) someone to laugh with
83. plain rigatoni with butter and salt mmmmm…..
84. ipod!
85. sounds silly, but a stuffed animal to cuddle on, prop up your sore limbs, rest your head on (i had a Nemo during chemo and he was my lucky charm)
86. many pairs of cute jammies that button down the front so you can maintain your dignity and style sans gown but still allow nurses access to your port/central line easily
87. not a ‘thing’ but a sense of humor. i don’t know how i did it, but i managed to laugh everyday in the face of death. i know it helped lighten my load.
LOVE to all. keep fighting the good fight.
January 6th, 2010 at 5:13 PM
88. PILLOWS - after my neck/chest surgeries I can’t lay down for at least a week, the only way I can sleep is to have my family help make a nest of pillows to prop me, not too high, not too low. This last surgery in October (my 4th) we used 9 of different shapes and sizes.
89. My Mom - she is here after every surgery and is the only one who can stand my little annoyances - how I like my food, tucking and untucking my feet, fixing the blinds, etc.
90. My son - He makes me laugh, and even when it hurts, laughter is the best medicine.
91. Face wipes/baby wipes. I have even conned the hospital into getting me some no rinse cleaner - when you don’t feel well enough to shower every day, a “sink” bath can make you at least feel human again.
92. Foot lotion - nothing I hate more than feeling like total crap, and not being able to get to sleep because of my dry, itchy feet. Does it even make sense that something so small can bother us so much at such a painful time?
January 6th, 2010 at 5:53 PM
I have a brain tumor and had 2 brain surgeries to remove it. These things helped me in the hospital:
93. BUTTON DOWN PJs: much better then a gown. Because of my head dressing I could not get anything over my head.
94. REAL HEALTHY FOOD: Hospitals do not understand what “vegetarian” means. I got a plate of peas one night for dinner, then turkey another night.
95. FUZZY SOCKS: The hospital was cold. I threw them away afterwards.
96. HERBAL TEA: for me it is comforting and it helped me warm up in the hospital.
97. BURT’S BEESWAX LIP BALM: comforting and functional.
January 6th, 2010 at 6:54 PM
Diagnosed Apr 09 with Thyroid cancer
98. My Hello Kitty robe and slippers - made people smile
99. My Ipod
100. Vanilla scented lotion for my hands (love the smell!!)
101. My own down pillow, it can be mushed and shaped until it is just right
102. My husband, the man has more patience than anyone I know and will not hestate to stand on someones desk so that we can get things taken care of!
January 6th, 2010 at 7:10 PM
Yikes - I accidentally deleted the post of Susan C. who was diagnosed Feb. 2007 with non-Hodgkins Lymphoma. Here are the things she could not live without that I hadn’t seen before that were really interesting:
103. A bowl of Hershey’s chocolates and a bowl of sour candy that I left outside my room so that staff and other patients could help themselves
104. A miniature gong, a gift from a friend, that I struck when I needed serenity now.
105. Popsicles (a treat for me and visitors), that I was allowed to keep in the staff refrigerator
106. A robe with velcro going down the sleeve so that I could wear it even though my PICC line was connected to an IV pole.
January 6th, 2010 at 9:39 PM
I’m a head and neck cancer (tongue SCC) patient, originally dx and surgery in Oct 2008, and am currently under treatment (surgery, now radiation/chemo) for a recurrence in Oct 2009 in a lymphnode. Since I haven’t gotten all the side effects from treatment yet, I’ll only list the things I’ve needed so far.
107. A scarf (or a wide brimmed hat) so I can protect my neck dissection scars from the sun (and avoid funny looks at the supermarket).
108. A bottle of water so I can constantly help out the lack of saliva caused by surgery and radiation.
109. A port to save me from getting prodded for IV placement over and over again. (I wish I would have had this one sooner. It makes life so much easier.)
110. My iPhone with apps to track weight/diet, medication reminders, a “chemo diary”, in addition to wikipedia articles about terms and really awesome blogs. It was also great to be able to send emails to family and friends from the hospital bed after surgery.
111. My husband to be my voice of reason and my main support during these crazy times.
January 6th, 2010 at 10:00 PM
Great post, Kairol and great idea - I’ll get a link to this on my blog tonight.
For me - stage IV rectal cancer w/liver mets, three abdominal surgeries, 75 rounds of chemo and both internal and external radiation - I needed different things in the hospital for surgeries (350 miles from home) than I needed at home during chemo.
I’ll try to never do a hospital stay without:
112. my cell phone
113. my PDA (to take notes, play games, keep my contact numbers at my fingertips)
114. (already mentioned and absolutely essential!) my iPod nano loaded with audiobooks and great playlists. In fact, I splurged on my first-ever iPod in 2004 when dx’d, to help me get through the 7-10 hour long Folfox/Avastin infusions.
115. a very small backpack to keep everything close to my bed hanging off the bed rail
116. an extension cord - I think it was around 6 or 9ft. long. Compact, but just enough to be able to bring electricity from the wall plugs to my bed, so that i could plug in all those small electrics ;)
117. straws have been mentioned, but a friend of mine sent me to MSKCC with party straws - neon colored bendable straws with those little drink umbrellas built into some of them and pink flamingos on the others. Like the candy and chocolates, every doc and nurse who saw one of those little party umbrella straws sticking out of my plastic cup of chipped ice smiled, and that definitely eased the tension of 27 days in the hospital (they just never got old)
118. slide-on shoes (my crocs or birkenstocks)
for treatments and post-op, I added:
119. scrubs (elastic or tie waist pants, lotsa pockets, loose-fitting and easy care)
120. button-front henley tees, short and long sleeves for any season. Henleys made it easy to access my port, hook up my infusion lines and even place ECG patches - and the variable button fronts meant I could maintain the illusion of modesty. During cold-weather treatment, I often wore a Henley tee under a scrub top for the ultimate easy-access but layered warm outfit.
One thing - I didn’t bring clothes to the hospital to wear. The first stay, I found out that I was far too bloated by the surgery/anesthesia to wear most of my clothes…and had no one to do hospital laundry, anyway. The second stay, I just planned completely wrong clothes and nothing I’d packed worked except my scrubs and the hospital gowns and robes. By the third stay, I realized that the only things I really wanted were some completely disinfectable supportive shoes (hello, crocs!) and some very loose-fitting clean clothes to wear home (hello, scrubs!) At least I packed for my 3rd surgical trip much more lightly than I had for my first two!
January 6th, 2010 at 10:26 PM
[...] What five things helped you get through treatments and/or hospital stays? Feel free to leave a comment on this post (I’ll forward them to Kairol) or visit Kairol’s blog and comment here. [...]
January 6th, 2010 at 10:44 PM
I’m so jealous of those listing spouse or parent. But anyway, 5 things that I do have that I’ve found to be exceptionally useful:
121. Laptop-Entertainment (including the music that many have already mentioned) and communication. Tends to be one of my only connections to the outside world and my CaringBridge page provides an excellent outlet, particularly when I want to scream at 2 am but can’t even begin to muster the energy or the voice.
122. Hard candy of some sort-helps with the nausea and also gets a little sugar into my system when I can’t eat anything else.
123. Hat and slippers-for some reason, as long as my head and feet are comfortable and warm, I’m good.
124. Stuffed animal-because everybody needs a friend who doesn’t care if he gets thrown across the room, hugged to the point where he’d be suffocated, or something to that affect.
125. Toiletry kit-yes, it seems a little obvious and no I don’t have to shave while on chemo, but it’s still nice to always have my own stuff: the familiar smells, tastes, etc. I find my own oral hygiene stuff actually tends to be gentler on the mouth sores than what the hospital provides for me.
January 6th, 2010 at 11:35 PM
Stage IIIA - Lung Cancer (Typical Carcinoid)
Aug 2009 - Left Pneumonectomy, Oct - Nov 2009 - Proton Beam Therapy
126. Pillows, Pillows, Pillows: After the surgery, it was not very comfortable to lay flat on my back. Stacks of pillows helped make it a little more bearable to sleep comfortably.
127. Journal: The journal helps to log feelings, symptoms, important info and to help remember things during the very hectic time after surgery and during treatment when its difficult to focus.
128. Loose t-shirts, comfy pants and a pretty shawl: My surgery scars are exactly where a bra would fit, so it makes it pretty painful to wear one. Then, my radiation treatment left burns in that area too. Having a loose t-shirt and a pretty shawl to wear when I needed to go to treatment or out and about helped. Having a few in bright colors or pretty floral patterns is fun but also help you stay cozy and warm in cold hospital waiting rooms.
129. Inspiring Blogs and Books: Reading about other’s experiences in blogs and books like this one helped make my experience more bearable and kept me hopeful.
130. My laptop and iphone: Keeping connected to what was normal before treatment started helped keep me sane. I was away from home for 2 months and traveled extensively over the course of the last 6 months for treatment, so knowing I could connect with family and friends was so important.
131. An Escape: Whether it was a silly movie, a stroll around a museum, or a visit from a good friend or family, anything that helped take my mind off cancer, even for a little while, was really, really necessary.
132. Chocolate Milk Shakes & Fettuccine Alfredo: When my radiation treatment was nearing its end, I started to get a really sore throat. Somedays, it was painful to swallow almost everything and I didn’t feel like eating because of it. Chocolate shakes helped soothe my throat and are just plain yummy. And even during some of the most painful soreness, fettuccine alfredo was the only food I could swallow pain-free.
133. Amazing Caregivers: My mom and my boyfriend were there for me 24/7 and went through each and every moment (good and bad) with me. They slept in uncomfortable cots in hospital rooms, sacrificed their own time and interests to take care of me, made me laugh and kept me company at appointments and scans, took me shopping and made me yummy food when I felt like eating something good, among countless other things, both big and small. Without them this would have been so hard. I am grateful for them each and every day!
January 6th, 2010 at 11:40 PM
Great blog, Kairol!!! Everyone is piping in!!
Stage 4 Splenic Marginal Zone Non-Hodgkins Lymphoma - DX 7/2006 - rituxin treatments, major exploratory surgeries (3/09) that turned out to be non-cancer related (can you believe the nerve of that appendix to rupture and make my docs think i needed a hysterectomy - I’m like a House episode waiting to be written!)
134. word search puzzles (couldn’t concentrate on books or movies or even crossword puzzles - but those wordsearchs: tough enough to challenge but easy enough to doze off in the middle of them)
135. fuzzy neck pillow and fuzzy warm socks (obvious)
136. someone to flip out on - telemarketers that call you on your cell phone work well for this!
137. morphine!!
138. a very understanding son who visited every day and snuggled with me to watch Spongebob
January 7th, 2010 at 12:38 AM
Marci’s spongebob comment made me tear up. And Frank makes a dang important point. You can buy backpacks, snow shovels and butt ointment at Walmart, but you cannot buy a good mom or spouse there.
January 7th, 2010 at 10:00 AM
Stage 3 colon cancer, dx 5/23/08 at age 31
Colon resection, 13 rounds of chemo, 2 ports, and a partridge in a pear tree. :-)
139. ATIVAN!!! This was my life saver. It still is, sometimes.
140. Ramen noodles - this was all I wanted to eat while I was on chemo.
141. Comfy, warm clothes, especially for the chemo room.
142. A way to keep your meds, schedule, drs appts, etc. straight - for me, it was my daytimer. Now, it’s my cell phone. This becomes especially important when chemo brain kicks in.
143. A single location for all of your cancer-related paperwork. I used a spiral notebook with folder pockets for a while, then transferred information to a file folder. This becomes important when you start going to multiple doctors and can’t keep names, phone numbers, addresses, and RXs straight.
144. Something funny everyday. This helps you keep your spirits up, and will be essential to your emotional survival.
January 7th, 2010 at 10:22 AM
Thanks, Kairol!
My five (stage II breast cancer, surgery & chemo during summer, fall ’09, just finished in Nov.):
145. Water bottle-took with me everywhere.
146. Notebook-to write down Q’s, notes, mullings.
147. Friends and partner-company for chemo and appts= imperative.
148. Zip-up hoodie
149. Various hats-to change between outside cold weather and inside hot flashes.
150. Snacks-fruit & nut bars.
And here’s my friend’s list of chemo tips, gleaned from many sources.
http://web.mac.com/marycappello/iWeb/Site/Chemo%20Guide.html
January 7th, 2010 at 11:48 AM
I was diagnosed 11/08 with stage IV colon cancer. I’ve had a year of chemo, two surgeries and am lined up for #3 (having to do with going #2 :> ) in January.
151. Burt’s bees lip balm for post chemo week. My lips are always dry.
152: Blanket(s). For hospital stays, I like my very warm fleece “Life is Good” blanket to remind me why I’m there. For chemo treatments (every 14 days), I like my homemade “prayer” quilt. It was sent to me by my Dad’s first wife and lots of people have knotted their prayers in for me. Makes me fee l surrouonded by their love.
153. My tumor. Seriously. A family relation (talented artist) knit a tumor for me complete with tumor cells inside, veins on the outside. It’s a rather ugly visual aide for chemo days when we’re attacking the cancer. I squash it, pluck veins from it to wear around my wrist, pull on strings to shrink the cells. GREAT visualization tool.
154. In addition to the electronic equipment (ipod, kindle, etc) and books/mags, I like to take gloves with me wherever I go. That way if my neuropathy goes after me…I put on my gloves and can feel toasty wherever I am.
Great post, Kairol…some good tips in here.
January 7th, 2010 at 12:08 PM
Thyroid cancer-total thyroidectomy and RAI.
155. Michael Palin travelogues (Pole to Pole, Around the World in 80 Days, Himalaya)
156. fleece socks
157. cocoa and shea butter body wash, perfect for long bathes
158. Netflix
159. my mom and dad
January 7th, 2010 at 2:27 PM
I suppose I didn’t read the instructions entirely, but in case anybody wanted to know-Leukemia for the past 8 and a half years, since I was in foster care. Now I’m on my own and still doing maintenance chemo. Also have had a BMT, a few surgeries, and radiation, so basically the full gambit.
And I’ve come up with one more essential thing-kind and caring nurses who like to spoil me a little bit because I’m the youngest on the unit. They’re awesome.
January 7th, 2010 at 3:26 PM
Thyroid Cancer, total thyroidectomy and RAI. Also spent time in the hospital during high-risk pregnancy.
160. All my gadgets and their chargers. It’s amazing how quickly the phone and laptop batteries go, and the night of my surgery I left the phone charger at home.
161. Lots of silly reading. I couldn’t focus on books or even long New Yorker-like articles. I read lots of fashion and gossip magazines.
162. Water and lemons for nausea
163. Rubber-soled shoes
164. Humidifier - the hospital room was bone dry and I started getting bloody noses.
January 7th, 2010 at 4:01 PM
well i was diagnossed with lung and thyroid and cowdens syndrome..
my 5 things…
165. well the ipod is a must it kept my sanity
166. my cell phone cause i was to weak to use a laptop
167. my two dogs are awesome i love romo and chloe
168. my wife was amazing during this rubbing my feet when ever they hurt
169. last but not least….i needed a copy of everything changes the insiders guide to cancer….this book was a must…i’ll look up the web site where this can be found and let you know…. :)
January 7th, 2010 at 10:13 PM
Diagnosed with stage III breast cancer at 38, did surgery, chemo and radiation
170. My iPod - The same day I was diagnosed I won an iPod. I would never have bought one for myself but I can’t imagine doing treatment without it.
171. Trashy magazines/Chick Lit - Both post op and during chemo I couldn’t pay attention to much and was often nodding off. Can’t really do that with War and Peace but People magazine doesn’t demand as much
172. Email - Not having to tell the same story 50 times to keep people in the loop, priceless
173. Notebook - My memory started going to hell so I would make up a list of questions and then write down the answers so I could remember them later.
174. A doctor willing to prescribe drugs - My doc gave anything I asked for (within reason) and believe it or not I was able to get through 12 rounds of chemotherapy without getting sick once.
175. Nightgowns with buttons - I didn’t get much advice post op about clothing but due to the double mastectomy and ovary removal I couldn’t move much. Clothing that goes on like a jacket was my a godsend.
P.S. for me finding the Young Survival Coalition was the most magnificent thing I could ever have wished for. The support of strangers can be more beneficial than people who knew you “before”
January 7th, 2010 at 11:54 PM
176. Professional chef to prepare low-iodine diet
The first time I did the low iodine diet for the Thyroid cancer, I was in the middle of a huge work project and knew I wasnt going to be able to handle the cooking….so I found online a professional chef to come to my house and prep the 12 days of food for me. heat and eat. It wasn’t cheap, but no more than a vacation and it was some of the best money I ever spent. If you are coming up on the testing, or the RAI, not a bad idea. PS the other 2 times I’ve done the diet, I’ve cooked.
January 8th, 2010 at 3:14 PM
Just thought of two more items.
Celestial Seasonings Tension Tamer Tea. The combination of chamomile, mint and other herbs was the only thing that help the chemo nausea.
Comfy hats and scarves. Found some great ones at http://www.headcovers.com. They specialize in products for cancer patients.
January 9th, 2010 at 8:33 AM
Kairol, these were the responses to my blog when I linked your question. Adding to the list!
http://patsteer.com/2010/01/which-little-things-make-your-treatments-bearable/#comments
January 9th, 2010 at 6:09 PM
Thyroid Papillary Carcinoma - Total Thyroidectomy 12/8/09 Still waiting for Radioactive Iodine Tx.
1. The doll that my 19 y/o and 4 y/o made “to make me smile in the hospital”. She had a little blue feather in her hair that was a must !
2. My Husband and Family - Ohhhh how they rally !
3. Caringbridge.org - a free personalized website that is dedicated to easing the work of keeping family and friends updated. A MUST !!!
4. Journal/Notepad - A big help in keeping track of medication schedule , cards/gifts received and thank you notes , and random thoughts at 3 am.
5. A Folder with Dividers - quickly needed a place to keep track of papers from each visit , lab/path reports and reasearch I had done.
P.S. Thank you for all of the RAI tips .
January 9th, 2010 at 10:04 PM
Stage 3B colon cancer: colon resection, 12 rounds of FOLFOX,& radiation
1. My husband-2nd only to God as my strength and rock
2. tart, flavorful things to eat, and pizza!
3. things that can be eaten warm due to extreme cold sensitivity. Orange juice and Sunny Delight taste good warmed up. Oatmeal and Malto Meal for breakfast (can’t wait til I can have cold cereal again!). I have a basket of clementines and pudding cups on the counter for snacks. Also bland, low fiber foods during radiation.
4. laptop for blogging and reading others’ blogs-SO helpful!!
5. Things to look at! tv for bedroom-for 3-4 days during my 2 week chemo cycle I hardly leave my bedroom. I also enjoy looking out the window at all the birds and squirrels. My sister printed up HUGE pictures of my daughters and other family and put them up all over my house.
Also-for this type of cancer you definitely need to take care of your bottom-wipes, Senekot S, Metamucil, Imodium etc!
And accept any help that is offered!!
January 10th, 2010 at 1:37 AM
Wow….I am 36 years old and have just been diagnosed with Stage 3 Breast cancer and still waiting to find out the next step since it is in my lymph nodes. Thank you all for the information…this will help me when i find out my treatment plan on Thursday……
I am learning quickly how amazing people are and so honored to have all of you on here for words of wisdom…..
keep on fighting and thank you for helping me
May 16th, 2010 at 6:46 PM
I had an incredibly rare form of papillary carcinoma. Two surgeries, two rounds of RAI and missed four months of work. I’m now cancer free and monitored ever so closely. I don’t know what numbers we’re on, so I’m starting at 200!
200: An amazingly supportive husband.
201: Laugher. Tons of laughter.
202: Prayer. Lots of prayer.
203: My sister.
204: My Rabbi and congregation.
205: Chocolate … dark only!
206: Soft tissue for when the tears came.
207: Memories and conversations with my dear father, of blessed memory.
208: Two of the best phyiscians ever!
209: Finding gratitude every day.
210: Lots of PJ choices.
June 5th, 2010 at 12:16 PM
I had rectsl cancer with chemo/radiation, surgery - permanent Ileostomy(removed colon/ rectum) -total hysterectomy - grassilus thigh flap procedure- I had an incision from just below my ribcage to my pubic bone - my rear sewed up and an incision on my right leg from my knee to my groin - folowed by more chemo
211. lots of nightgowns and duster robes - I had drainage from where the rectal area drain was removed post surgery
212. lots of bed pillows I had trouble finding a tolerable position in bed to sleep at night
213. slippers to help me walk on our wooden floors without slipping
214. an over size reclinning chair - It hurt to sit and I couldn’t get comfortable in bed
215. home health aides -who came to help me with personal care (I was too weak to shower myself and get out of bed myself) so my husband who also had the girls to care for could get some relief
216. a husband who is a saint
217. a mother who came to stay with me when my husband went back to work and comforted me when I cried over things like my husband who went out and searched all over town to find and buy me my reclining chair because I was so uncomfortable in bed and unable to sit without pain.
218. my two daughters 6 and 8 at the time who still loved their mom.
June 29th, 2010 at 5:10 AM
Wow, this list is amazing. I’ve bookmarked it so I can refer to it again and again. That’s right, this list is my “must have!” :-)
June 30th, 2010 at 7:07 PM
Five essentials for me when in hospital for Non-Hodgkins Lymphoma:
*Eye-mask - essential for keeping out light through the blinds and door to get a deep sleep.
*Ear-plugs - essential for keep noise out whilst trying to get your deep sleep with your eye mask.
*A blankie from home - there is nothing more soothing than soft blanket from home that keeps you warm and make you feel comforted and happy.
*A DVD player & nature DVDs - particularly if you are in for a long time….peaceful and beautiful visions of nature can help you feel less anxious and/or depressed.
*A netbook (or laptop) - being connected to the outside world and being able to chat with family & friends, will make the days go faster.
Thanks for reading, from jodiesjourney.com
June 30th, 2010 at 7:54 PM
Schadenfreude! Oh was I ever happy that reality/dating TV was just beginning to boom right after my ovarian cancer diagnosis in 2001. I may be the only person you’ll ever know who actually saw all four episodes of “Married by America,” a program so abominable it will never be repeated. (Great writeup by nytimes columnist Virginia Heffernan in Slate: http://www.slate.com/id/2081573) Discovery channel’s “I Shouldn’t Be Alive” has been helpful in some of my darker moments. I may have cancer, but at least I’m not being eaten alive by bears!
July 1st, 2010 at 1:05 PM
Wow, you guys were really on it, everyone has mentioned pretty much everything….Im Thyroid cancer 2x, thyroidectomy, and neck dissection and RAI. Some of this is inpt. an at home
1.def pillows
2.sour candy, i like the altoids sour ones
3.big time BIOTENE toothpaste, amazing, they also have gum for dry mouth
4.Boxers for post surgery/procedure, if you can so youre not all hangin out when they make you walk. If not, put on other gown backwards so youre covered
5.I was in the hospital for a week, for colon issues…and I needed diapers, i have a slender build and the ones they had were for a huge dude(seriously?)they had no smaller sizes and were falling off i was like, fml…so i called mom (thank you mom) to get pull-ups in the large size, they only had boys but it was fine.
6.Audiobooks-rent them from library free or now you can pay an itunes them and have them on hand. Theyre great when you cant see tv or tv makin you puke
7.Zofran ODT- its the melt in your mouth kind, so you dont have to try to swallow pill
8.baby wipes, they also have large wipes to do your whole body
9.beanie an blanket cuz its freezing in hosp.
10.Sippy cups an baby bottles, my fav is the one with a bend in it so no air comes in and my friend bought me online glass ones that can be totally sterilized.
I think thats all for now, everyone pretty much covered it…fantastic ideas! Rock On!
July 4th, 2010 at 11:36 AM
Stage 1b vocal cord cancer diagnosed July 2009 at the age of 27. Undergoing another surgery/biopsy on July 15, 2023 due to a new lesion on my cord.
134. My mom. She has been present for every surgery and always availabled on the other end of the phone if need be.
135. My blanket. I’ve had it since I was a child and I have no qualms admitting it still gives me comfort
136. Ativan. I once went three days without sleeping post op due to surgical complications. For the sleep Ativan has allowed me to have, thank you.
137. My dog. He loves me know matter whether I look like hell and have just been bawling my eyes out. He is always there with a soft kiss and warm body for a snuggle.
138. Dry erase board. My surgeries render me unable to speak for 1-2 weeks. The board is a savior for when I need to communicate — with my family, at a restaurant, etc.
139. CaringBridge. My CaringBridge site has been wonderful. Not only does it let me vent out how I am feeling and what is going on (so I don’t have to repeat it a million times), but it allows others to leave messages of encouragement. SO GREAT. (http://www.caringbridge.org/visit/hldg)
July 4th, 2010 at 11:26 PM
1. Slipper Boots, The day after surgery I walked everywhere!I am a strong person and cannot stand to be sitting all the time. i wanted to go home and get strong. I proved to them I could go home in five days instead of ten.
2. Straws, Its really hard to drink anything or move your arms around the first day. You really need liquids.
3. Loads of t-shirts, I got blood everywhere and my back was leaking from the pin they stuck in it, so I was changing my sheets and clothes every five hours.
4. Wipes, they provide wipes but they smell funny. Haha
5. Make friends with the Transporters :) I got to places faster like my PET, CT MRI scans. Get to know them and they will love to come and get you.
6. Bring popcorn, the nurses love it and so do the people in the rooms around you :) i shared everyday.
7. Extra really warm blanket! I couldnt survive without my giant blanket to keep me warm.
8. People to come visit.
9. Movies! I like to just lay and relax, trying to use the computer or read a book was straining, movies are easy.
10. Be strong :)
July 14th, 2010 at 2:46 PM
My survival kit through treatment for stage III Hodgkin’s Lymphoma:
140. My Smart Wool Socks: Super soft, squishy and warm in the frigid hospital
141. Anything carbonated: When I began to hate ginger ale, I moved on to 7up, then mineral water…
142. My personalized “Booyah Cancer” CD: Essential tracks for the car ride to treatment including the “Rocky theme”. Instant strength booster.
143. Heating pad/cold packs: For the ever-prevalent body temperature change
144. The family…couldn’t have made it through without them for countless reasons.
September 6th, 2010 at 6:18 PM
I completed a mastectomy, six months of chemo and a month of radiation for Stage 2 grade 3 breast cancer. Because I live in on a rural island, each day of treatment included a drive and a ride on the ferry and another drive = lots of time in the car. My list:
1. a “travel on the ferry free” form - thank you BC Ferries and the provincial government! It made a huge difference not to have to pay the ferry cost every time I had to travel for treatment.
2. a lap blanket/quilt/afghan and several small pillows for comfort while sitting in the car / sitting at the ferry terminal parking lot. A travelling bed, in effect.
3. a nightshirt for hospital stays. PJ bottoms didn’t work for me - but a well-over-the-bum nightshirt and warm socks did.
4. a small soft sided insulated “lunchbag” for snacks, drinks, fruit, etc. for me and the driver
5. take out menus for a couple of restaurants between the hospital and home. Not for me - for the driver. He’d order dinner when we left the hospital, pick it up en route for the ferry, and be able to have dinner on the ferry (somewhere far away from me so I couldn’t smell it). A real time-saver and nicer for him to have something warm to eat….
5. a fabulous husband.
September 7th, 2010 at 12:37 AM
Beth, I really appreciate your comment. So many of us take for granted the access to cancer care that comes along with living in a city. When writing Everything Changes, I learned so much from the interviews I conducted in rural areas where the access to care involved a lot of thought, planning, and so much more energy. I recall reading about a fund that helps with helicopter rides to treatment for patients who live in remote areas of Alaska. I’m glad you have a fabulous husband who was by your side.
Best,
Kairol
October 27th, 2010 at 12:39 PM
Kairol,
I was so excited to find this blog. I am a breast cancer survivor, who underwent a bi-lateral mastectomy and chemotherapy. I too found it difficult to know what products I would need following my surgery, and to battle the side effects of treatment. Ellen, a friend of mine who had chemotherapy for a rare blood disorder and I teamed up and in August launched, http://www.CancerBeGlammed.com It is an online shopping guide featuring stylish post-op products, fashion solutions, pampering products, great gifts and more to help women recover in comfort and style. Check it out, we would love your input and to have you write on our blog. All the best, Lisa Co-founder Cancer Be Glammed
January 19th, 2011 at 3:33 PM
Ovarian cancer, hysterectomy and chemo, complications meant ended up on nil by mouth for 16 weeks on TPN delivered via hickman line.
Must haves:
Tummy pillow -how are you supposed to cough, sneeze or laugh without it post abdominal surgery.
Journal - to rant and rave in as well as making notes and writing down the things you forget to ask when the fog descends.
Tea tree oil - including a few drops in shampoo and body wash keeps all those outside bugs and germs at bay.
Press studs and a needle and thread - kept me occupied cutting up sleav es and adding press studs for ease of access (IV, Hickman lines, monitor lines) I needed a lot of options with required changing averaged 4 times daily over 112 long days!
Friendly faces - anyone who wouldn’t look at me with “THAT” look, the poor you one was welcome.
Fantastic site and a wonderful people involved. Keep fighting.
February 2nd, 2011 at 7:55 PM
1. Socks!
Hospitals are always freezing, and since my treatment began in the summer I didn’t think to bring socks the first time. I sure learned after that! You loose hair and body fat and suddenly 80 degrees feels like 50. Socks are a god send.
2. Ice Cream
the sugar wasn’t always a great choice but it sure made me feel better when my jaw joints were so sore. and, my doctors asked me to keep on weight, so might as well have a little fun doing it!
3. soft knitted caps
bald heads get cold and tender.
4. my bike.
I understand this is not something everyone can relate to but when i felt well enough riding my bike often made me feel even better. if i could ride, even for a short while, it gave me energy like nothing else could, got me out into the fresh air (great to combat the B in ABVD) and gave me a sense of independence and freedom that is rare during treatment time.
5. as others have said, my caretaker, my Mom.
she served as a therapist, nutritionist, shoulder, friend, everything i could ask for and more than i knew was capable in one human.
April 26th, 2011 at 12:44 PM
Hodgkin Lymphoma
Every single treatment I had with me my Dad and games. We played card mostly, but sometimes Risk and Monopoly. Once I started dating my bf, he came too. I’m pretty sure we were the loudest group of 3 people, and I like to think we brought a little more cheer and laughter into the treatment room. Games helped take my mind off of the ABVD treatment that was being poured into my veins. And, all the competitiveness let me smile even with treatment going on.
June 1st, 2011 at 5:49 PM
1. Loved ones
2. Button up or other items that don’t go over the head.
3. Ginger ale with straw- you may or may not want to drink it flat.
4. Water!
5. Reading material. Book, magazine. Bible if permitted
6. Portable DVD/CD player with ear phones
7. Movies- preferably funny
8. TV to watch favorite shows
9. Newspaper
10. Laptop if permitted
11. blanket if permitted
12. SENSE OF HUMOR!! you will need it!!!!:)
September 14th, 2011 at 7:03 PM
I conceive you have noted some very interesting points, thank you for the post.
February 7th, 2015 at 11:27 PM
Thank you so much for all your ideas, I wanted to put together a “survival kit” for a friend of mine who is going through it like all of you and I got some great ideas. Unfortunately I won’t be able to offer her the human factor as she is in Ireland but a whimsical/practical/necessity package will be on it’s way to her soon. God bless you all