Be an advocate for your loved one. You know what your loved one can handle. If the
pain medicine isnʼt working or the anti nausea medicine isnʼt working, keep working with
the doctors until you find out what does work for them.

Donʼt be afraid to go to another doctor if you feel they are not doing enough for your
loved one or if you donʼt feel comfortable with them. Sometimes if you just have a
feeling one way or the other about a member of your loved oneʼs healthcare team, donʼt
ignore it. It may be your subconscious that realizes something your brain doesnʼt yet.
Remember they doctor is working for you, not the other way around. You are their
voice!!!

Ask questions. Donʼt be afraid. Nothing is taboo and make sure that it is explained to
your satisfaction. If not, then KEEP ASKING!!!

My husband was 38 years old and diagnosed with stage 4 colon cancer with liver mets.
During his 2nd surgery (to remove the metastasis to the liver-whereby they removed 1/3
of his liver) he started bleeding internally and was losing so much blood that he went
into a coma for 4 days and was in ICU. The Oncologist told me that with the cancer
diagnosis and the staging and the metastasis and then especially with the post-op
complications he told me that Mark had less than a 5% chance of living the next 5 years
and in all honesty, I probably should go to make his funeral arrangements as they did
not give him much hope of even leaving the hospital. I remember telling the Oncologist
after he started talking percentages, to put a muzzle over his mouth any time he talked
to my husband. I explained to him that I was trying to do everything within my power to
keep him motivated and moving in a positive direction and if he heard that little bit of
information, he would give up. If he felt he needed to say things like this, tell me but
donʼt ever tell him.

Be careful of foods with artificial coloring (especially after surgery) Before he started
chemo but after his 1st surgery, I was trying to cook and bake a lot for him to get him
interested in food again. But especially after you have just had your colon removed, this
can really be a lesson trial and error. I learned that things with nuts, and seeds and
pretty much any fruit or vegetable were not “happy” foods for him. I made him a recipe
I had made from a box cake mix of red velvet. Well, when you are recovering from
surgery and you gorge yourself of red velvet (these happened to be cookies), it looks
like you are bleeding. It is one of those things in hindsight is pretty funny, but not so
much at the time.

Mark was diagnosed on Friday and had surgery on Saturday. My coworkers got
together and made me “us” a basket. The caregiver may find it very difficult to leave the
patientʼs side, even to just get a drink or a bite to eat. This basket is full of bottles of
water or pop, snacks, crackers, gum, mints, meat snacks, chips, etc. It can be
personalized to the tastes of the caregiver and I include a couple pens and a notepad or
notebook and something to cheer them up like a coloring book and crayons or a comic
book or a deck of cards. I have used this same idea every time I have a friend or
relative in the hospital. Remember as a caregiver you need to keep up your strength to
be strong for them-the patientʼs needs are being met.

After the diagnosis there are a lot of people who want to help (friends, co-workers,
people from church) and one thing I have seen done for others is to organize a food
rotation schedule, where maybe once or twice a week people sign up to cook for the
caregiver/patient/family. (Salad/main dish casserole/dessert) People sign up like a pot)

Luck. (Just make sure that you let those cooking for you know if there are any dietary
concerns or allergies) It is so nice even for one night not having to worry about what you
are going to cook for dinner.

After an initial cancer diagnosis and they person has begun chemo, we have made
“care packages” for the patient. It includes boxes of herbal tea, dill pickles, cranberry
juice, lemon drops and sauerkraut. Things that could help the metallic taste go away.
Also include some soothing music, inspirational books and things like gift cards to the
gas station they may use (like the grocery store gas station) or to the grocery store or
pharmacy they may use.

I will never forget one of the things my husbandʼs surgeon told me during the consult.
She said do not look at the big picture. (The whole picture of surgeries, chemo,
reconstruction etc) If you try to, it will drive you insane. Just focus on the next task in
front of you. Letʼs just get thru surgery tomorrow. Sometime that may even be too
much. Sometimes you really just need to break it down to “Lets just get thru the next
hour or even if that is too much get thru the next 5 minutes. Whatever you need to
break it down to be able to process it, deal with it and keep moving forward. This was
one of the best pieces of advise I ever received. I still use it every day!!!
Pearls of wisdom from a caregiver.