Chemotherapy - so much to learn!

Wednesday, October 1, 2008

Don't start chemo therapy until you know what is going to happen to you, both physically and emotionally. Even if you have already started chemo...something I write might help you.

I had six months of chemo in 2004 for breast cancer and I now realize how I should have prepared myself. I found out what was going to happen as it happened and I had to keep adjusting myself. I hope my suggestions will help all of us remember that as the patient we need to feel empowered and we must insure that we always know what is happening and that we always have the right of "first refusal". We can say, "No, thank you." as well as "Yes, I like the plan we worked out for me."

We are not responsible for the fears of our family and friends. This might sound unfeeling but I am only encouraging us to remember that the needs and wants of the patient have to come first. All to often some cancer patients do things or have treatments before they are ready and comfortable with what is happening. Sometimes it is at the urging of family and/or friends and sometimes it is the doctor. No one will ever convince me that a week or month's delay in surgery or treatment will really alter how long I will live or how effective the surgery and/or the treatment will be. Well, maybe never...

from my heart to yours
--- I encourage you to stop and breathe! Cancer is what it is and you and I will just have to make decisions that seem to be beyond our abilities. But if we have a system for surviving all that faces us we will feel more powerful and believe me there is real joy in getting the medical profession to stop and listen. I have made it happen on many occasions and I take great pride in these victories.

First, purchase a notebook that you feel comfortable with and two or three pens.This notebook will be your constant companion whenever you have any appointments with any one who is involved with your health care. You should write down the purpose of the visit, any comments or decisions and the names of ALL drugs that enter your body. Know the names of the chemicals that you are choosing, what they are suppose to do and any and all side effects. For every side effect there is a PILL. I say this from experience... the experience I had each and every time I said: I am nauseous. There must be something you can do." Never ask the doctors, " Can You Help Me?" , assume that they can and you know despite their best efforts not to help....they do. Only kidding some of my BEST DOCTORS are doctors.Before I make any decisions about my care I need to understand what will happen. Therefore, I will write some notes and ask some questions

Don't be surprised if you are asked: "What do you want to do?" When the oncologist told me what chemicals would be in my "cocktail" and that I could have a choice of chemicals. I looked at her as if she were crazy!!!!! I had been an elementary school principal, so if she had asked me what procedures I wanted to follow during a fire drill, I was prepared. But how should I know what chemo therapy I should use. My brain had already stopped functioning back when I was told that I had breast cancer. and I could barely hang I was expected to be an oncologist who planned my therapy treatment plan.

Well, if the medical profession wanted me to play doctor then I would. So I had two conferences with my oncologist, wrote down the planned chemo and the alternatives that were not being used. Determined why certain choices had been made. QUESTION....QUESTION....QUESTION.....AND YOUR LAST AND MOST POIGNANT QUESTION SHOULD BE: "TAKING INTO ACCOUNT MY PROFILE AND PATHOLOGY REPORTS, IF I WERE YOUR SISTER WHAT WOULD YOU TELL ME WAS THE BEST PATH TO FOLLOW AND WHY." Resist the temptation to speak....the silence will get very loud but eventually the doctor will speak. Listen closely to what is said and keep using the "sister" word. It seems to create a more personal relationship instantly.

Eventually, you will have made the decision to have chemo or not to have it. If you choice not to....God Bless You and Let's Keep in Touch and I wish you great joy and peace. Don't look back and never second guess yourself. If you decided to have chemo recognize that the decision you made was very hard and admire yourself for taking the action you took. Chemo is a strange things. No one who has had it, in my world, has every had the same emotional or physical feelings.Try listing your symptoms in the order of prominence and then select the path of action............You can call and see the oncologist and ask for remedies. Remember for every physical symptom like nausea this is a pill. If the first pill doesn't work,,,,keep giving feedback to the doctor. Be aware of the changes, if any, the pill has caused and tell the doctor. Leave with a new prescription, held proudly in your hand.

You slowly work your way down the list and by the time you are at the bottom of your first list, there might be a second....but it does help time to pass as you move through chemo...doing your best to manage your treatment and live your life. Remember this is why we do take chemo.

One of the most frequent complaint about chemo - after losing hair, is how we feel physically. In talking with soooooooo many women who had chemo here are some of what I see as some great remedies for nausea, roller coaster feeling, feet touching the ceiling, chairs spinning and lifting off the floor, and food, oh, food, actually looking like the vomit that eating will cause...
Saltine crackers, tea with honey, ginger ale, oatmeal, farina, and all white foods like white rice, white potatoes, white cheeses, cottage cheese, white bread. I wondered why about this "White Model" and I think that because the color white is so blah we don't think "food" ane we eat.

There will be more to come...but I am off to a Spa with my sister just to be with nature.I hope what I write helps helps me. You see I am blessed with a person in my life who encouraged me to write. I may never be famous, but I am a person capable of writing what I feel and sharing it, hopefully, in a way that helps those of you who read my blog. By the way...thank you for reading my thoughts.

Will write when I get Back. God bless the election of 2008. AMF

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