Tips From Survivors

Coping With the "C" Word
By Cathy Quon, Neuroendocrine Pancreatic Cancer Survivor

You didn't want to hear the "C" word…you have a sick feeling in your stomach…you may want to cry…you want to deny that this is the diagnosis. These are all natural reactions. Allow yourself to feel these feelings. However, once you have gotten over the initial shock, how can you effectively and efficiently help yourself?

• Don't let fear paralyze you. As soon as you can, start devising a plan to help yourself get the care and treatment you need.

• Don't be afraid to ask for help and support. Relatives, co-workers, friends and acquaintances want to do something for you - it's one of the ways they cope. Don't try to go it alone! You'll be amazed at how many people, even complete strangers, are willing to help in some way.

• Friends of friends often have contacts or information that can help you.

Do set up your support team:

• Emotional supporters: People to turn to when you're under emotional stress

• "Calm under pressure" supporters: People who will keep a level head even in emotional situations. These are often analytical people who will ask a lot of questions on your behalf

• Research supporters: People who will help you with research into the disease, treatment and long-term prognosis (more on this later)

• Medical health supporters: This may be a combination of your oncologist, family physician or internist, surgeon, nurses, mental health therapist, fitness trainer, chiropractor and others

• Do distance yourself from people who are negative or who get you down. Even if they're well-intentioned, they can have a negative impact on your emotional state. You need your strength!

• Do get a second or even third opinion on your diagnosis and prescribed treatment. If there is any ambiguity with the diagnosis, seeking a second opinion can be critical to ensuring you get proper treatment. Only a bad doctor would be offended by your seeking a second opinion.

• Do contact your health insurance provider immediately for any clarification on your health benefits. Good questions to get answered:

- What type of medical treatment is covered?

- Is pre-approval required for hospitalization?

- What doctors are covered by your plan? What if you want to seek a second or third opinion outside of the network?

- What's the maximum out-of-pocket for the year?

- What's the maximum lifetime benefit?

- How will claims be handled? What is the telephone number to use for disputes on claims?

• If you're employed, do contact your benefits administrator to review your company's disability policy:

- What are the provisions for short-term disability? How long does it take to process the paperwork and who do you contact to start this?

- What are the provisions for long-term disability? How long does it take to process the paperwork and who do you contact should this need arise?

- How long is long-term disability covered?

- Is your job guaranteed? If yes, for how long?
- Can you keep a laptop computer and access to the company's system while you're on leave?

• Do assess your financial situation based on what you learn from your insurance and disability discussions. Do you have enough money to cover your monthly bills?* If not, can you apply for a bank loan or identify relatives or friends who can loan you some money?

• The transition between short-term to long-term disability may take one to two months to process. During that time, you may not have any disability income.

• Do question authority…question, question, question. Seek clarification on medical terminology or descriptions of a medical procedure until YOU are satisfied. It is your right as a patient to feel totally comfortable with what is happening.

- Don't be intimidated by any medical staff. If you're not getting the care you think that you deserve, say so immediately. Example: If a nurse assigned to your room is unresponsive or incompetent, contact the head nurse and ask for a change in personnel.

• Don't give up any more control than you have to. You have the right to refuse any medical treatment or procedure or to postpone treatment until you feel ready. Doctors make recommendations, but ultimately, it is your body and your decision.

• Do appoint one or two people who can accompany you to all doctor's visits, take good notes, and ask the questions that you may be too emotional to ask.

• You and your companion should each carry a notebook and take good notes about what is discussed during all visits. If you need to, ask for clarification or spelling of medical terminology. This information may be critical for your research. You and your companion should compare notes after each visit to identify outstanding questions.

• Do appoint people to your "research team" who are resourceful and well-versed in using the Internet and the library. There is a lot of junk online, so ideally people on this team should have a good eye for quickly identifying what is pertinent and what is not.

- You may want to divide the research team into: (1) someone who helps you understand more about the generalities of the disease, (2) someone who researches standard treatment and clinical trials and success rates with treatment

- If you believe alternative healing methods and therapies, you may want to assign a third person to investigate these approaches* Do keep a diary of your daily weight, food intake, bowel movements, urination patterns and anything noteworthy in your mental and physical health. Patterns can be helpful to your doctors for future diagnosis and treatment.

• Do set up an office area in your house for research, doctor's appointment notes, and insurance and/or disability paperwork. A big chalk board or white board can help in tracking your "to do's."

• Do keep a single list of your doctor's names, phone numbers, addresses and names and dosages of medications with you at all times. This is often needed by the medical community and on various forms. Keeping the information on one piece of paper makes things easier.

• Do carefully monitor the bills from your health care providers and the claims paid by your insurance. Often, the insurance company makes mistakes (usually not in your interest) and provides you with less coverage than your plan allows. Haggling with the insurance company is a necessary evil. If you don't have the energy to do this yourself, appoint a relative or friend who is a bull dog as well as a patient person.

• Do try to keep yourself as relaxed and healthy as possible. Try to eat, sleep and exercise. Consider relaxation techniques such as meditation, imagery, and biofeedback.

• Do take your medications at the prescribed time and dosages. Drugs work more effectively when pain is just starting than when it is already bad. Avoid the grin-and-bear-it approach.

• Most importantly, even if the statistics seem dire, try to stay as positive as possible. The mind-body connection is a powerful one. Your immune system is strongest when you're not under stress.

Good luck and many blessings to you.