A Checklist and Some Thoughts for New Cancer Patients and Caregivers
Some thoughts for new cancer patients and caregivers

This is the sole original work of one caregiver for others just starting the medical trip dealing with cancer. The advice given here is based on real life experiences, but the reader is advised to use it as one of many sources of information. This is not the work of a medically trained person. There are many approved medical journals, books, organizations and support groups who can provide more cancer specific and personalized recommendations. However if you are just starting out on this cancer trip this information might help you get over or around some of the big bumps.

We enjoyed an outstanding relationship with our oncologist. He was willing to listen to second opinions, he encouraged us to seek answers at a research facility, he referred us to other doctors when help was needed. Hopefully you work to find a doctor you can trust and respect as we trusted and respected ours.

Remember you will be dealing with trained professionals, and sometimes they think we are trained professional patients and caregivers. Most of us are not. Hopefully you'll find some help in these topics. Thank you, and may your journey be blessed.
February, 2000

In November 2010 a 4th grade student - with leukemia - found a cancer resource. This page is used as a resource and the girl's teacher suggested the girl's find be added here. This is the reference to click on if you want info on what is cancer, types of cancer and signs of cancer



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What Do You Mean? I have Cancer?

The diagnosis of cancer is terrifying. What do you do, and where do you go from here? The first thing is to learn as much as you can. The internet is great. Before the internet there were books. There still are books. Books can be read almost anyplace, anytime, and they can be marked up with notes, pages can be folded and most people find them friendly.

Here are five books that I recommend. Each of these is available online or through traditional bookstores. From experience I wish I had read the last two books before I needed them. I encourage everyone - patient, caregiver and family members to read all as soon as you are able to. Even if you live to be 110, you will still benefit from the knowledge they contain.

  1. "Diagnosis Cancer" Your Guide Through The First Few Months
  2. "Living Downstream - an Ecologist Looks at Cancer and the Environment"
  3. "Coping with Prednisone - It May Work Miracles, But How Do You Handle the Side Effects?"
  4. "How to go on living when someone you love dies"
  5. "How We Die" Reflections on Life's Final Chapter

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"Just a minute Doctor, I know it is here - somewhere"

Some things we learned might be helpful to new cancer patients. If you pretend you are going on an extended vacation then you might do some planning, record some information, and keep a diary of events. Cancer care is such a trip, it last years and along the way you might find the needs are similar to your vacation trip. We learned the value of this when we met with various doctors. The information gave us the ability to communicate accurately with them and helped to eliminate those forgetful moments that always happen during periods of stress. The more accurate information our doctor had the better help the doctor was able to provide.

We started out with notes on calendars, tablets, a note here and a note there. After a while we learned the value of a simple three ring binder, a package of dividers and a 3-hole punch. We started simple, but eventually built up this organization.

Treatment schedule:

Phone list:

Medicines:

Blood tests:

Other Tests:

Personal data:

Hospitalizations:

Unusual conditions:

Current Symptoms:

My Diary

Living Will and Medical Power of Attorney

Support Groups

WHY ALL THIS?


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"I'm okay I guess"

The Visit to the Oncologist

No one likes surprises. Doctors are no different.

Unless your visit is simply routine and everything is normal for you - there are some suggestions that will help you and the doctor.

One very important lesson we learned is: DOCTORS LISTEN TO PATIENTS. It is up to you to tell the doctor what the doctor needs to know in order to help you. Don't force the doctor to evaluate you based on blood, urine or X-ray tests. Your body is telling you things and you need to assertively translate these feelings into words for your doctor. If you feel great tell the doctor. If you feel weak, weary, depressed, anxious or plain lousy -- TELL THE DOCTOR - and start a discussion. Now is not the time to be a "GOOD PATIENT" - you need to be an "HONEST PATIENT" and give your doctor the information needed to make the appropriate care decisions.

Think about your visit. Why are you going? What is your concern? What has happened since the last visit? What do you want as a result? How do you feel?

Now, put yourself in the doctor's position. The first question most doctors ask is: "And how are you today?" Most patients answer: "I'm okay, I'm here aren't I?" Then you go into a discussion of recent test results or planned medicine changes, your blood pressure and pulse are recorded and off you go.

How can the doctor help you with that limited information?

If you take a few moments and write down your needs in advance you will find that you have some very important items and some items that are just worrisome.

Sometimes it helps to write these items down and take them with you to the doctor's office. When the time is appropriate refer to your list and begin a conversation with your doctor. Describe how you feel, what your symptoms are, and always express your concerns.

The doctor always has a support staff. A cancer patient needs a support staff too. We found it helped if there were two of us in the room with the doctor. The patient is focused on what is happening and their reaction to it. Another pair of ears, a free hand and a tablet and a pencil can be a great aid to the patient who is trying to verbalize and think about their concerns. The meeting with the doctor is truly the time when it helps to have a caregiver or supportive person in the room to take notes and sometimes ask 'the dumb question' that patients are unable to do.

If you find that you have some significant issue and some major concerns then you might consider sending a copy to the doctor with a note asking the doctor to help you address the concerns during your next visit. This way the doctor has an opportunity to prepare for your visit and will be more in tune with the issues you are facing.

We felt it helpful to give the doctor the background on the issue, the impact the issue was having on daily life, some observations on the issue, and some of our specific questions concerning the issue. It could be as simple as:

"I've never in the past been dizzy. After our last visit you recommended an increase in my steroids. Now each day I have periods of dizziness. These periods usually happen after I get up from a chair and sometimes they happen when I am climbing stairs. I am not bothered walking around or doing other normal activity. Is this dizziness related to the new blood pressure pills my Internist started or am I reacting to steroids?"
None of us knows why the dizziness started, but the doctor will know that there has been a change in your condition and the doctor will know when and how it happens and that you are concerned. The doctor can begin to make the right diagnosis - thanks to the information you provided.
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Helping yourself

You can help yourself and your doctor by: reporting changes in weight, changes in bowel patterns, changes in vision, changes in overall stamina or strength, changes in mental attitude.

You can help yourself by taking only the medicines prescribed for your condition - don't add over the counter meds without prior approval - don't conceal herbal or 'natural' supplements. Take your medicines as prescribed. Twice a day generally means once every 12 hours - 10:00 a.m. and 10 p.m. for example. Noon and 6:00 p.m. just won't do for you what the doctor expects.

You can protect yourself. Wear a medical mask if your immune system is weak. Stay away from crowds and other sources of airborne or communicable diseases. Protect yourself in the hospital too.
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"But I don't want to go to the emergency room"

Do I need Help?

What is and what is not an emergency? Different factors apply to different people. For an infant there might be one set of guidelines. For a robust healthy athlete or a typical adult there could be still other guidelines. For a cancer patient there normally are other guidelines. What might be okay for others will not be acceptable for a cancer patient.

Unless your doctor directs you differently, here are some situations when I would go directly to the Emergency Room of the closest hospital at any time of day or night.

Medical care is like many things in life. It is only as good as we make it. You, your family, friends, caregivers and the professional medical people all benefit when you are happy and well. When you need help they all benefit by information that only you can provide. We have to work together to tame the monster and it starts with you and your cargiver. God Bless you on your journey.
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A Few Cancer Sites

There are many internet sites dealing with cancer. (A word of caution. Some of these sites require a web browser that has support for frames. If you receive an error message you might not have that type of browser.)

Here are a just a few for starters- simply click on the name to visit:

-o- Cance Updates Research and Education
-o-Assoc. of Cancer Online Resources (ACOR)
-o- CDC | Cancer Prevention and Control | National Cancer Data
-o-Heartlight Devotionals for Spritual Help
-o- CancerGuide: Steve Dunn's Cancer Information Page
-o- CancerNet: A service of the National Cancer Institute
-o- Quackwatch Home Page
-o- OncoLink: NCI :
-o- Cancer Facts and Other Information . Sites and Types
-o- Welcome to the American Cancer Society
-o- Cancer Drugs, A Canadiian List
-o- Mayo Clinic Cancer Center -
-o- National Coalition for Cancer Survivorship
-o- RxList , complete searcheable detailed description of prescription medicines
-o- On-line Medical Dictionary
-o- FDA Adverse Events Reporting System
-o- Drug Assistance Programs
-o- An Online Resource for Cancer Patients and Professionals
-o- Online Help to Search for Cancer Information
-o-Search help on cancer drugs
-o-Cancer supportive care programs
-o- Excellent Online Leukemia Resource

As you access each cancer site you will find connections or links to many other related sites. In fact the number of resources is overwhelming at times. Don't try and read each one, don't try and memorize everything. Use these sites as, and when, needed. If something is especially important, then print it out and file it in your notebook.
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Online Cancer Discussion Groups

In addition to the generalized resources listed above, there are many patients, caregivers and professionals who have joined together in discussion groups. Discussion groups exchange electronic mail. Discussion groups are open to all interested parties. Joining a specific discussion group allows you to exchange information with others who are dealing with the same specific cancer situation. Electronic mail can be exchanged publicly or privately. Electronic mail can be distributed in a digest form (think of Readers Digest) or in individual pieces of mail (think about telegrams). These discussion groups can be extremely valuable. The Association of Cancer Online Resources hosts the following discussion groups. To learn more you can access their page Assoc. of Cancer Online Resources (ACOR) and follow their instructions.

Here are the discussion groups which were active in February 2000.

ACINIC-CELL Acinic Cell Carcinoma (Cancer) Mailing List (26 subscribers) 
ACUP AdenoCarcinoma of Unknown Primary Online Group (122 subscribers) 
ADCC-MED Adenoid Cystic carcinoma Medical Discussion (149 subscribers) 
ADEN-CYST The Adenoid Cystic Carcinomas (Cancer) Online Support Group (205 subscribers) 
ALERT Cancer Legislative Alert System (6 subscribers) 
ALL-L  Acute Lymphocytic Leukemia General List (196 subscribers) 
AML  Acute Myelogenous Leukemia (291 subscribers) 
AMYLOID The amyloid Online Support Group (258 subscribers) 
ANGIOGEN: Current Research on Angiogenesis (1,038 subscribers) 
BC-SUPPORTERS Support List for Husbands of Breast Cancer Patients (74 subscribers) 
BLADDER-ONC The Bladder Cancer/ Transitional Cell Carcinoma Online Support Group (179 subscribers) 
BMT-TALK: Online Communication Forum (1,126 subscribers) 
BRCA Breast Cancer Electronic Support Group (0 subscriber) 
BREAST-ONC Current Advances in Breast Cancer Treatments (5 subscribers) 
CA-PATIENTS Cancer Patients Forum (80 subscribers) 
CAM-TRIALS Complementary & Alternative Medicine Clinical Trials (108 subscribers) 
CANCER The General ACOR Cancer List (252 subscribers) 
CANCER-ESP informaci˘n para pacientes y sus familiares (27 subscribers) 
CANCER-FATIGUE Fatigue Associated with Cancer and Cancer Treatments (117 subscribers) 
CANCER-FERTILITY Fertility Issues associated with Cancer (46 subscribers) 
CANCER-FR La liste francophone de support et d'information sur le cancer (2 subscribers) 
CANCER-MED: Cancer Related Medical Discussion List (151 subscribers) 
CANCER-PAIN Associated with Cancer and cancer treatments (151 subscribers) 
CANCER-SEXUALITY Sexuality after a cancer diagnosis (144 subscribers) 
CARCINOID The Carcinoid Cancer Online Support Group (300 subscribers) 
CCC-NET Cyclists Combating Cancer (65 subscribers) 
CLAS Cancer Legislative Alert System (2 subscribers) 
CLINICAL-TRIALS Clinical Trials (624 subscribers) 
CLL Chronic Lymphocytic Leukemia (1,539 subscribers) 
CLL-CN Canadian CLL List (60 subscribers) 
CLUB-METS-BC The CLUB-METS-BC Online Support Group (151 subscribers) 
CML Chronic Myelogenous Leukemia (Cancer) (427 subscribers) 
COAG-DISORDERS Coagulation Disorders Mailing List (16 subscribers) 
COLON Colon Cancer Discussion List (672 subscribers) 
CPCOS Cancer Patients Christian Online Support Group (163 subscribers) 
CTCL-MF CTCL/Mycosis Fungoides information and support (490 subscribers) 
DESMOID The Desmoid Tumor Online Support Group (185 subscribers) 
E-SARCOMA The Ewing Sarcoma Online Support Group (cancer) (165 subscribers) 
EC-GROUP Esophageal Cancers Discussion List - a member list of ACOR, Inc. (748 subscribers) 
EPID-BULL: Epidermis Bullosa Online Support Group (3 subscribers) 
FACING-AHEAD  Facing-Ahead: Helping to face the death of a loved one (204 subscribers) 
FAITH A Discussion List about Faith and Coping with Cancer (29 subscribers) 
GEN-ETHICS The Human Genome Project: Ethical, Legal & Policy Issues (131 subscribers) 
GENOMICS The GENOMICS Discussion Group (32 subscribers) 
GVHD The GVHD Online Support Group (201 subscribers) 
GYN-ONC The Gynecological Cancers Online Support Group (146 subscribers) 
HAIRY-CELL: Hairy Cell Leukemia List (23 subscribers) 
HEAD-NECK-ONC The HEAD & NECK Cancers Online Support Group (246 subscribers) 
HEALTH-BRIDGE: Partnerships for Quality Online Health Information Resources (137 subscribers) 
HEM-ONC Hematological Malignancies Support List (745 subscribers) 
HEM-ONC-FR Hem-Onc-FR Liste Francophone pour tous les cancers du sang (7 subscribers) 
JP-NET Jewish Parents Network (3 subscribers) 
KAPOSI The Kaposi Sarcoma Online Support Group (68 subscribers) 
KIDNEY-ONC The Kidney Cancer Online Support Group (500 subscribers) 
L-M-SARCOMA The leiomyosarcoma (cancer) Online Support Group (342 subscribers) 
L-SARCOMA The liposarcoma (cancer) Online Support Group (42 subscribers) 
LARYNX-C The Larynx Cancer Online Support Group (180 subscribers) 
LIVER-ONC The Liver Cancer Support Group (184 subscribers) 
LT-SURVIVORS: Cancer Long Term Survivors Discussion Group (154 subscribers) 
LUNG-ONC: The Lung Cancer Online Support Group (432 subscribers) 
LUPUS: Discussions of Lupus and Related Diseases (426 subscribers) 
LYMPHEDEMA The LYMPHEDEMA Online Support Group (285 subscribers) 
MALEBC  - A Male Breast Cancer Discussion List (95 subscribers) 
MEDWEBMASTERS-L Medical Webmaster Discussion Group (943 subscribers) 
MESOTHELIOMA (Cancer) Support & Information (91 subscribers) 
MMATRIX-L: Internet Medical Resources Announcement List (971 subscribers) 
MPD-NET Myeloproliferative Disorders Support List (1,489 subscribers) 
MYELOMA Multiple Myeloma Support List (990 subscribers) 
N-BLASTOMA The Neuroblastoma (Cancer) Online Support Group (215 subscribers) 
OLLIER-MAFFUCCI Ollier's/Maffucci Disease Support Group (4 subscribers) 
ONCO-MEETINGS Oncology Meetings Announce List (1 subscriber) 
ONCO-NURSE Oncology Nurses Discussion List (13 subscribers) 
ONCONEWS: The Oncology Electronic Newsletter (368 subscribers) 
ORAL-ONC The Oral Cancers Online Support Group (124 subscribers) 
OSTEO-P: The Osteoporosis Online Support Group (87 subscribers) 
OVARIAN Ovarian Problems Discussion List (983 subscribers) 
PANCREAS-ONC: The Pancreatic Cancer Support Group (238 subscribers) 
PED-AIDS The Pediatric AIDS Online Support Group (25 subscribers) 
PED-ALL Pediatric Acute Lymphocytic Leukemia (Cancer) List (165 subscribers) 
PED-ONC The Pediatric Cancers Online Support Group (226 subscribers) 
PETS-CANCER Dealing with your Pet cancer (0 subscriber) 
PROSTATE The Prostate Problems Mailing List (1,545 subscribers) 
R-BLASTOMA The Retinoblastoma (Cancer) Online Support Group (201 subscribers) 
RARE-CANCER: The Rare Cancers Discussion Group (205 subscribers) 
SARCOMA: The Sarcoma (Cancer) Online Support Group (207 subscribers) 
SARCOMA-MED Medical Questions about Sarcomas (454 subscribers) 
SCAN-BC-LIST Scandinavian Language Breast Cancer List (39 subscribers) 
STOMACH-ONC The Stomach Cancer Online Support Group - a member list of ACOR, Inc. (184 subscribers) 
TC-NET: The Testicular Cancer Online Support Group (444 subscribers)
THYROID-ONC The Thyroid Cancer Online Support Group (395 subscribers) 
TUBER-SCLER: Tuberous Sclerosis Electronic Support Group (1 subscriber) 
WSMG-NET The Waldenstrom's Macroglobulinemia Cancer Online Discussion List (291 subscribers) 

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Just Remember this.....

What Cancer Cannot Do
Cancer is so limited .
It cannot cripple love,
It cannot shatter hope,
It cannot corrode faith,
It cannot destroy peace,
It cannot kill friendship,
It cannot invade the soul,
It cannot silence courage,
It cannot steal eternal life,
It cannot suppress memories,
It cannot conquer the Spirit.

May your God be gentle with you and yours
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Cancer Comments

Yesterday, I attended a "Survivorship Conference" that dealt with health insurance, employment issues, appeals, and living with all kinds of cancer.

The afternoon session began with a mesmerizing talk by a gentleman who has survived more than 7 years with a strange form of carcinoid. I want to share a few of the comments he made that I thought especially meaningful

"Accept your diagnosis, but not the prognosis." Boy, how true. Put those damned statistics away and live your life!!

"Cancer may NOT be the worst thing that ever happens in your life." He referenced a serious car accident that brought him closer to death than the cancer had. And indeed, Alzheimer's, ALS, MS are all diagnoses which have virtually no treatment options. I am grateful that with MM, there are choices and levels of ways to keep me going strong.

"I'm not living with cancer; the cancer is living with ME, and is having one hell of a time doing so!" I LOVED this quote. Let's not make it easy on this intruded called MM.

"Humor is injurious to your cancer." The more we laugh, the harder it is for our cancer to do it's nasties. In fact, this guy, who had numerous tumors, said that he actually named them. Two that recurred were called "Monica" and "Linda." However, when he met his now-fiancee (after losing his wife to cancer), he said with a grin, "I've now had to re-name the Linda tumor."

"Cancer survivors have every reason to be depressed; but not to STAY depressed." I think that is something we are always struggling with on this list. Where is the line between the normal depression that comes with a serious illness and the chronic depression that needs to be treated? I guess for each person, that line can be different.

Wrtiten by a participant in the Multiple Myeloma e-mail group.


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The Last Chapter

Trips come to an end and so does life. Most of our trips were just the right length and we were happy to come home as planned.

Sometimes, though, trips are interrupted and plans change. This was true of our last trip - we left the house planning to come back - but that plan didn't work. Cancer may be the disease you are faced with, but death can come at anytime to the patient or the caregiver, for any reason.

Maybe you will benefit by learning about the errors in judgement that we made.

While we had executed a Living Will and Medical Power of Attorney those were the only 'legal' documents we had completed. Those documents were sufficient for the hospital.

However we hadn't addressed circumstances that might surround either of us. If and when we had to call for emergency help or ambulance transfer to a hospital how would that go?. In the event of a potentially terminal situation did either of us want 'life supporting or desparate life saving' procedures performed by the emergency personnel or police department?

In our state these emergency helpers are duty bound, if not legally bound, to support life. Sometimes these attempts are hurried and invasive. Sometimes the patient and the patient's doctor have already agreed that measures such as these could cause undesirable results. For that situation our state, Washington, has a procedure and legal paperwork to support a patient's wish that emergency personnel 'Do Not Resuscitate'. The completed procedure leaves the patient with a form that can be given to the emergency personnel instructing them to follow, without fear of penalty, the patient's wishes.

Fortunately we did not need that paperwork. However the emergency people did ask about it - and we did not have it. It doesn't cost any money to do this in Washington. Your state or country might have a similar free procedure.

Our trip did end in the hospital. The unexpected did happen. The hospital medical staff immediately switched from 'medical experts' to 'caregivers'. That was an immense help. Through them calls went out for a chaplain we knew, and a cancer support person we knew. Within minutes they appeared and the transition process began. Each of us experiences death differently, however it is nice to know that you don't have to be alone. Help is as close as the nearest nurse or doctor. They will do everything to help you. Just ask for help.

There are many 'things to do next'. Family, friends, church, employers all need to be notified. Most families can work together to do those tasks.

The surviving spouse though is left with the rest. We live in a community property state and most assets were in our joint names with right of survivorship. That takes care of a lot of work. That does not take care of it all. When dealing with cancer there are many valid reasons for not having done something. But in a time of need the old reasons don't offer much comfort to the survivors.

Planning for death is not pleasant at anytime. It is especially unpleasant when one is left alone to do it all.

You have a choice.

There is no better time to do the planning than today. Hopefully your today is a day when health is abundant, the sky is blue and life seems to have no end.

Now is the time to hug each other and get to it.


I hope this information is of use. Your feedback and ideas can help improve it. While there are dozens of different cancers it is my hope that this simple list can give you enough information so that you can be better prepared to deal with your specific cancer needs.
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Prepared
in memory of
a journey by
Ellen Palmer
As seen by:
Dave Palmer
Oakville, WA 98568
360/273-8117

February 2000



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Grief, the unwanted guest

There is no prescription or checklist for dealing with grief. There is no single prayer, no single answer that will resolve the issues that surface when dealing with the loss of a loved one.

A chaplain recommended this book to me. I wish Ellen and I had read it years ago. I strongly recommend it to you.

"How to go on living when someone you love dies"
Therese A. Rando, Ph.D., originally published as "Grieving"
paperback, published by Bantam Books, August 1991 ISBN 0-553-35269-5
Covers adult, child, spouse, parent death.  Sudden or anticipated. 

For what it is worth, here is a log of correspondence A Personal E-mail Grief Diary which shows some of the issues a person deals with when facing grief caused by death of a loved one. There are duplicate entries and entries which might make no sense at all. This is not an attempt to convince you to treat your grief a certain way. Everyone responds to grief in their own way.

In this case it was the loss of a spouse, loss of a marriage, loss of a 20+ year relationship, and loss of future plans and hopes that triggered these notes. To respect the privacy of others, all email addresses have been removed. In most cases the email shown is only mine.

This is presented only for purposes of illustrating the range of feelings and the way in which these feelings might change over time. This is not an attempt to solicit feedback or response to any issue. As the reader will find out many of the issues have been resolved through various techniques.



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