Principles of Medical Ethics 

Before You Donate

Think very seriously before donating to any breastcancer organization, or fundraising program until you read their Annual Report to see who their top contributors are, and if they have a product that appears frequently in the message the organization sends to the public. That would be unethical and its illegal. The same applies to a request that the public buys products, but does not receive a "donor receipt" for tax-deductible purpose. Read any and all food labels that breastcancer "non-profits" are promoting to raise money. Some organizations tell the public to help them raise money by asking you to visit their websites, but that only gives them "hits" to increase their sponsors.

Another tip, "signing" an online Petition is not acceptable, so don't fall for such antics. An ethical non-profit, or professional will not request your visit to their website, nor use "cookies" placed on your computer when you visit their site.

Purchase the Breastcancer Postage Stamp, the Post Office will always give you your charitable deduction receipt. Its a valid form of fund raising.

 

RECOVER!

DURING AND AFTER BREAST CANCER DIAGNOSES

(note: most of this information is applicable to all healthcare consumers and all critical illness)

"Patient experiences and medical resources must be synchronized.  Patients know way more about reactions to treatments, and recovery experiences, than the physicians."

(Repeated quote from the Table of Contents (Index) page, "The Basics," because it is so true and so evident among breast cancer patients.)

Here I am, not recovered from anything, facing another involved internal scope procedure under anesthesia in a couple of weeks, not far out from the war-front with breast cancer, in psychotherapy to try and cope with these months of terror as well as all that drudged up in my psyche.  I am grateful for part of my personality - that I was always willing to face the "devil" and not turn to alcohol or numbing "drugs."  It is still my goal to try to tell those of you things that may help - but that's a beginning.

I promised myself when I agreed to record pages for this web site that I would do so only so other women wouldn't have to go through what I have without anything to prepare me, by reading, or research.

NOW:  Simply put, I began back doing deep water strengthening exercise (not aerobics) as soon as I could, and I was in the water preparing my arms for each mastectomy and even 12 hours before each one, to build as many lymph and blood vessels as possible.  

I am trying to do an equal amount of walking (that will be the day!).  BUT, fatigue is a problem - in spite of what the pamphlets say about chemotherapy or radiation - don't believe them! 

(note: I later found out I also had post-polio syndrome affecting my progress but it was not a consideration at the time because no one knew much about it - and I'd forgotten I had one exacerbation in the early 1980s). 

Regardless, most women experience fatigue and a lot of it.  Just don't ask your doctors for that injection advertised on TV - it may only be given in very special circumstances, and by an astute oncologist who watches your blood counts for several days FIRST.

Some of us are left with a metallic taste in our mouths for months and months - I had it for over a year after my last chemotherapy session.  Some of us have 'joint' discomforts, or pain, and feel 'arthritic (chemo may cause inflammation of your connective tissues which does not quickly subside and it may affect the joint cartilage thus giving you osteo-arthritis - but there's ways to deal with that - begin taking Glucosamine sulfate [the Chondroitin is unnecessary - like a placebo - it just costs more] to build new cartilage), and some of us cry, easily, at the drop of a hat.  There are as many reasons for the depression as there are different cries. Just make certain you have an excellent therapist who is experienced (well experienced) with critically ill patients.

A colleague told me, "There were times when I couldn't call my mother back, when I'd cling to the wall with sudden exhaustion, and not want to answer the phone or read the mail."  Ahhhhhh.  These are the experts - those who've walked this path ahead of us!

Maybe listing things would be easier:

  • Make your 1st. goal feeling better about yourself! Get psychological help anyway that you can, even if you have to go to the county hospital. If wearing a wig makes you feel better, wear it; if not, don't! Same with prostheses! Now, with two mastectomies, at least I am symmetrical, and find the finest breast protheses heavy and noticeable - to me! Thus, I don't wear them (I didn't wear wigs either...they were hot, and none matched my original hair color, so I wore turbans  using great oblong, bright patterned scarves, wrapped and tied on my head at the side, top or back). 
  • Don't attempt anything without talking to your doctor first about what you will be doing and exactly what it involves! Try not to do it during a regular visit - it may be more effective to write it in a letter, E-Mail or fax.  They have so much to contend with just keeping up with their notes of your examinations, etc., they may not hear you completely. Be sure you include all of your physicians treating you now!  Remember, YOU enforce the Team spirit, and it's YOUR body and life - and your team.
  • The breast cancer-experienced woman who told me not to expect to feel better for a year (after chemo) was absolutely correct.  Don't push!  She is a physician's wife, and if anything could have been done to hurry up her chemo recovery, I know he would have done it.  Just ignore the literature that says, "In a few weeks, you'll feel like yourself again."  Hogwash!  Like one of my friends said (when I told her I thought I was depressed), "GADS woman....I'm DEPRESSED, and I don't even have cancer!"

A very wise oncologist told me, "I don't think we oncologists have any idea how chemo really affects our patients..."  We don't tell them!  Not really!  We're afraid of being branded a complainer, etc. and - we want to be well! Therefore, many times patients are referred to rheumatologists (most often found to be not the problem), or pain clinics, etc.  The truth of the matter is we have connective tissue swelling, AND we've had enough steroids (most often given with chemo) to keep a mummy preserved

It takes our bodies a long time to get rid of steroids, and chemo - and some women gain weight, instead of losing weight, when we're tossing our cookies like mad!  Forget the weight gain, and concentrate on doing things that you can do to make you feel better, and give your body balance...you'll know...you won't have the swollen feet or fingers so easily, the joints won't hurt so badly, or often, etc. At times, I would awaken in the morning, five months after chemo, and I could not open my hands without pain in my finger joints.  If I sat, and still this happens, for very long, my feet swell!  UGH! (note: three years later, that began to stop!)
 

  • Water has always been my nirvana, so water exercise is my fitness choice; I teach adaptive aquatic exercise (or did), for the Arthritis Foundation, and after virtually twelve weeks in bed, I was worried. One reason is because I had polio as a child, and two, one of the chemo therapies can cause heart damage (which was healthy when I began). In my worst moments, and most painful, I'd say, "Just roll me into a pool, PLEASE!"   If you don't use it, you lose it!  I'd have given anything to be able to get into a pool and just float, and let the water buoy my painful body.
  • I started out walking in the shallow end of the pool, back and forth, and backward, and moving my arms in the water...IN the water.  Then, found a Breast Cancer aquatic class!
  • I would recommend that you call the YWCA, YMCA, the Arthritis Foundation, local hospitals, and rehabilitation centers, and ask them if they have an aquatic program for breast cancer survivors, or arthritis patients. Join it. If you do NOT have the money, ask the organization, a church or United Way to help you out. Your physician may be able to order it under insurance coverage. Sometimes, there is no charge. You DO NOT have to know how to swim for these programs.  You may be afraid of the water - don't worry, you will be well protected, not made to swim, and there are a 'zillion' buoyant items that can be put on you - you'll be convinced with a patient therapist helping you...its not you who's supposed to work; they will help you.
  • If you are in water therapy, take a water bottle with you to drink from several times during your session - and use it! Good instructors won't let you in the pool without water to drink.  Aqua therapy causes as much sweating as land therapy but the participant is unaware of it.  Its a good idea to take a little container of granola, or home-chopped veggies with you, too, for nibbling on the way home, or in the locker room...even a banana is a good idea, if you've eaten well before the pool therapy.
  • Us 'water people' think aquatic exercise is the best, of course, BUT, recent research has shown that the same muscles have fibers that respond only to aquatic work or land work.   Water provides you with exercise/recreation that gives your muscles resistance, and is easier on the joints, and buoys the cardiovascular system; walking, etc., provides you with weight bearing exercise.  We need both!  So there you go….try to begin walking somewhat each day. 
  • It's hard at first. Just go out to the end of the side walk and back up to your door. Or walk for 2-4 minutes around your house. And gradually increase.  If you're really having a problem with this, find a buddy to help you begin these first steps.  Ask someone to help you . . . I've found younger people are generally the most responsive to finding ways they may be of help to you.  I will never understand why the Scouts aren't used to be 'walking' or exercise 'partners' for people recovering from a critical illness.  They are much more convincing.  I can't count the times I'd circle a kiosk at 'the mall' while a walking partner would 'window shop,' and I HATE programmed walking of any kind, but thought I'd do well with a partner.  No more.
  • I have a memory problem from a fairly a closed-head injury 11 months prior to my breast cancer diagnosis, and it was worse during and after chemotherapy. Dealing with the volumes of mail and things to fill out overwhelmed me, so everything, and everyone gets a file folder! At times, I can't even remember IF I took medication (that's when I know I'm getting close to needing to speak to my psychodoc).  I'd place my meds on the shelves of the medicine cabinet appropriate to that time of the day.  For example, in the a.m., I take my medication, and place it on the 2nd shelf; then at noon, I take it and place the bottle(s) on the top shelf, and at night, put them all back down on the bottom shelf for the a.m.  I tried a 'pill box' separated for doses, and it didn't work for me.  A psychodoc instructed me to only attempt three things a day (answering mail, dealing with providers/insurers, etc), and try to get some exercise the rest of the time.  Good Tip!
  • Getting around: store, church, doctor visits, etc. can be a real hassle. If you don't have friends to call on, a local church or synagogue, call United Way, and the American Cancer Society (they are seldom much help, but try anyway). If you call them you HAVE to need rides during non-rush hours. That's utterly impossible in a city anywhere in the U.S. Ask friends to call you before they go shopping, so they may pick something up for you, and certainly someone will pick you up for church.  In some cities now, Pea Pod is online, and you can have your grocery list delivered to your home.  I did that.  It was good, except, if they call to ask about a 'replacement' item, decline it.  I've received 'deodorizing sprays' when I asked for spray cleaning agents.
  • PAIN! After my second mastectomy, the pain was worse than the first but I think that is because my first time,  my family focused on giving me pain medication and I had 'work' done on the opposite breast that really raised havoc with me. This 2nd time, I began to notice a feeling as if the skin on the back of my shoulder, triceps, and down under my armpit had been blowtorched- burned!  My surgeon also found a thrombophleblitis (blood clot). The former was nerve damage, and my psychodoc knew exactly what to do about that (thank God he is still board certified in emergency medicine), and aspirin is working on the clot. BUT, tell your doctors when you hurt!
  • I've found my Team very responsive to any discomfort I have, and always know exactly what to do for it. If you don't, get new team replacements.
  • The exercise in water helps your arm after mastectomy, too. If lymph nodes are removed, you must follow your surgeon's recommendations on exercise.  If you can perform lateral arm movements (out to the side and back to your body) before surgery, on the side your breast surgery will be on it will help a lot.  
    • You can also accomplish that with a stretchy Dyna-Band (wide, brightly colored elastic sheeting), knotted and put the knot in a door. Close the door.  Stand with your side (say right side) facing the wall/door, grasp the Dyna-Band by winding it around your hand a couple of times, and bring it from the door to your side, 10x/ twice a day.  Then, raise the Dyna Band knot higher in the door, and pull it across toward your chest, but keeping your elbow at your side; 10 times, same thing.  Facing the door, and placing the knot about your shoulder level, you can just pull the band down, hold, rest, and slowly back to start position.  Never do any exercise rapidly - ever!
  • WEIGHT: Before anyone knew I that the breast cancer cells in my breasts were Estrogen and Progesterone receptor negative, I was given Tamoxafin "just until..." we found out.  Oh my, I was nauseated, and I swear my mid-section grew!  I thought I had liver cancer!  One survivor told me that happened to all of her friends, religious sisters, and they can tell which ones are on that drug!  Great!  Months later, it is just beginning to subside.
  • Most of the people I know who had chemotherapy told me they gained weight! I was soooo sick, I knew I wouldn't/couldn't gain weight, and I didn't - until after CHEMO. I did notice the fluid retention so many women speak of, and from the steroids. But, my weight inched up the three months after I finished my chemo, and by the time of my second mastectomy, I thought I'd better give up eating! So, I try to follow "The Omega Factor" book (see Reading), and I eat vegetables or fruit whenever I'm hungry, and tons of green leafy vegetables. I do not eat meat, and never did, but still---once you start exercising you may notice weight gain, too, as muscle replaces fat, but your size goes down! YAHOO!

  • My internist told me I could survive the Irish Potato Famine because I do not have a thyroid gland, so cannot reeve my metabolism....I couldn't eat, but I didn't lose weight.  THEN, one of my team told me he has a patient who gained 100 lbs!  Oh, gads, that would be a terrible experience. Almost two years later, I found out that there IS a reason a high per cent of women with breast cancer gain weight!  But, my internist had no idea of that research coming out of NIH.
  • Rest when you feel you need to rest.  Retreat when you want to.  Let things 'slide,' don't push yourself - you won't be able to sustain the pace healthily.  Read Tao!  You may find you just need some time to be alone, and "lick your wounds," so to speak.  It's very hard for me to do it, too, but I'm on the fortunate end of having a psychiatrist and oncologist who really help me.
  • A dear friend who has fought lymphoma told me that this is a life changing journey.  He was so right.  Some of us feel as though our lives will never be the same.  We won't.  There seems to be some grief over the loss off the previous self, some of my friends who've been very ill tell me.  I think that's correct, among grief over other losses.  Grieve!  Cry!
  • Please remember, I'm just a newbie to this breast cancer, and I have another series of tests coming up for something else.  I have been left with a lot of psychological healing to work on, so I may only go so far in helping you with this phase: Recovery!  But, our psyches and our fitness are totally ignored by the medical profession during cancer.  During my worst sieges of chemo, I'd think, 'someone roll me into a pool, or a lake; I'll feel better.'  During the worst 'chemo storm' I could have cared less; however, being in bed, surgically recovering, chemo, and more surgery, makes one weak, and there has to be some type of an advocate to help your body, and your psyche.  Nursing care used to involve helping the patient walk around, or even did passive exercises.  That obviously no longer exists. You're on your own. Once again!
  • Exercise: I asked one of my daughters to 'hand me' just one of my 2 lb weights.  She replied, "Mom, how about just starting by raising your arms and legs up so many times each, first, then increasing the reps."  Smart kid!
  • Keep thinking:  "Slow is faster."  It is.
  • When you feel alone. . . click on our link to join the list server at http://www.bcexperience.org/bclist_join.html, to find others who have "been" there...and lots of hugs and love. It isn't only for breast cancer people its for any healthcare consumer who has a question or just needs someone to 'talk' to via e-mails (that way you have control - you can hit the delete key!).  (smile)
  • If you think you never want to go back doing what you used to do, you are not alone.   Books are published about this!  It is easy to realize how we have allowed abuse from employers, society, and ourselves.  Some of us end up feeling that we never want that to happen again, but don't know how to change our lives, enough.  Your answer will come.

 

 

        reviewed 4/03