A survivors quick tips to managing cancer booklet 6 1 14

Available for free at http://quicktipsformanagingcancer.com Copyright ©2014 DonnaLee Caringella. All rights reserved. Updated 6/14

A Survivor’s Quick Tips for Managing

Cancer Tips and techniques that helped me cope and heal

with a Stage IV cancer diagnosis

DonnaLee Caringella


How to Use this Booklet

My situation is unique - as is yours. We each encounter and cope with cancer in our own way, based on our backgrounds, history and circumstances. In turn, the best treatment for cancer and its effects on one’s body and life are unique to each individual, even for those with the same diagnosis. Each of us has to find our own way that is best to manage cancer.

I am a stage IV non-small cell lung cancer survivor. I do not have a medical background. I’ve been learning through my experience with cancer. The information shared in this guide is simply the coping and healing approaches that have worked for me. My hope is that some of these approaches will be helpful in your own situation.

Dealing with cancer and its treatments can overwhelm the brain and make processing information difficult. Therefore, the information in this booklet is formatted for easy reference. It is small in size for portability and is composed of simple one-page statements across three “P” themes – Procedural, Physical and Psychological. The best way to use this guide is to scan the Table of Contents for a topic that interests you, note the information you find useful, and disregard the rest.

This booklet is free and can be downloaded from http://quicktipsformanagingcancer.com.

I hope you are able to find something that will make your life easier as you explore the pages that follow.

http://quicktipsformanagingcancer.com/

Available for free at http://quicktipsformanagingcancer.com Copyright © 2014 DonnaLee Caringella. All rights reserved.

Table of Contents

How to Use this Booklet ................................................ i

Procedural .................................................................... 1

Being Your Own Advocate ............................... 2

Positive Health Care Practitioners .................. 3

Researching Your Condition ............................ 4

Misguided Information ................................... 5

Staying Resolute .............................................. 6

Information from Medical Visits ..................... 7

Notifying People about Your Cancer ............... 8

Communications with Supporters................... 9

Delegating ..................................................... 10

Saying “Yes” and Saying “No” ....................... 11

Getting Organized ......................................... 12

Resources to Get Organized .......................... 13

Preparing for the Worst ................................ 14

Your “Emotional” Affairs ............................... 15

Striving for “Normal” ..................................... 16


Physical ...................................................................... 17

Aligning Mind, Body and Spirit ...................... 18

Being Kind to Your Body ................................ 19

Helping Your Body Fight ................................ 20

Physical Changes ........................................... 21

Food Inclusion ............................................... 22

Hydration....................................................... 23

Using Your Breath ......................................... 24

A Quiet Place ................................................. 25

Treating Yourself ........................................... 26

Psychological .............................................................. 27

Moving Forward ............................................ 28

Positive Mindset ............................................ 29

Celebrating .................................................... 30

Cancer “Gifts” ................................................ 31

Managing Your Expectations ......................... 32

Worrying........................................................ 33

A Safe Outlet ................................................. 34

Visioning ........................................................ 35


Eye on the Prize ............................................. 36

Visible Support Reminders ............................ 37

Tending to Important Relationships ............. 38

Laughter ........................................................ 39

Helping Others .............................................. 40

A Note from the Author ............................................. 41

1


Procedural

2


Being Your Own Advocate

Since you are the one with cancer, you are also the most invested in your treatment and outcome, so you need to take ownership for the treatment of your cancer and advocate on your own behalf.

Medical specialists, alternative healers, therapists, friends and family are all partners or consultants to advise you in how to fight your cancer, but you should make the ultimate decisions. You are the one who has to live (or die) with these decisions – nobody else.

Ask questions and keep asking them until you fully understand the advice you are being given. Find out about possible treatment side effects, short– and long-term; and any heightened susceptibility to other health problems.

Different health care practitioners have different styles and approaches so get second, or even third opinions, to find a health care practitioner that is compatible with your preferred approach to treatment.

3


Procedural

Positive Health Care Practitioners

If your doctor, healer or therapist is not responsive or does not seem concerned about your personal and emotional well-being, look for a more suitable partner to help you on this cancer journey.

If you don’t have complete confidence in your health care practitioners, seek medical care elsewhere. The last thing you need is to be second-guessing your treatment. Even if a health care practitioner has an excellent reputation, they might not have the right style or approach for your physical and psychological needs.

Look for health care practitioners who believe in the possibility of survival and who don’t just “write you off” due to your condition.

4


Procedural

Researching Your Condition

Use the internet to learn more about your particular diagnosis and treatment options, but be sure to get accurate information by using only professional medical and health websites like www.mayoclinic.com or www.cancergrace.org. Be skeptical about information you find on unfamiliar or personal websites. There is a lot of incorrect information posted on the internet (see Misguided Information on the next page).

Take notes on your research and bring these notes to your health care practitioner to get his or her professional insights regarding the information you discovered.

http://www.mayoclinic.com/

http://www.cancergrace.org/

5


Procedural

Misguided Information

Information about cancer, survival rates, treatments and cures is abundant. Be discriminating in evaluating the validity of information you come across. The internet is especially notorious for information that is unproven or even patently false. Cancer patients are seen as easy prey by unethical vendors promoting fake cures and treatments.

Keep in mind that statistics represent generalized outcomes across large groups of people. But you are an individual case – not a statistic. Don’t let dire predictions of the “odds” get to you. There are people beating the odds every day.

Don’t be swayed by outspoken people, some of them in support groups, who are quick to dismiss a treatment option you are considering or pursuing. That kind of “support” you don’t need. If you are unsure about information you hear, discuss it with your trusted health care practitioner.

6


Procedural

Staying Resolute

Once you have done all your research and had all your medical consultations, you will ultimately have to make choices for your health care practitioner and treatment options. Although there usually is more than one option, you have to choose the one you feel is best for your personal condition. This is a difficult choice. There is typically no single “right” answer that applies to everybody.

Once you make the choice, stick with it. Second-guessing the path you take will add a lot of stress to your situation and make recovery more difficult. Don’t let anyone persuade you to go in a direction you don’t feel is right for you.

If, after you have allowed a sufficient amount of time for your chosen treatment to work and you are still dissatisfied with the results; you might reconsider another treatment option. But again, it should be your choice.

7


Procedural

Information from Medical Visits

Given the “brain fog” you might have from the cancer and its treatments and the technical terminology around many cancer treatments; it’s easy to get overwhelmed or confused during your appointments with your health care practitioner. To make sure you get answers to all of your questions, write a list of them prior to the appointment and take it with you.

When you hear or read technical medical terms that you don’t understand ask your health care practitioner what these terms mean and keep asking questions until you understand fully.

It is helpful to have another person present during an appointment to listen and then compare what they heard with what you heard. Even better, have this person take notes during the appointment. Or take notes yourself. Another alternative is to ask your health care practitioner for permission to record the meeting and listen to it later to make sure you heard everything that he or she said.

8


Procedural

Notifying People about Your Cancer

Most people are shocked when they first learn that someone they know has cancer. Cancer strikes fear in most people and reminds them of not only your mortality, but their own. You will encounter many different responses – crying, disbelief, withdrawal, or immediate pledges of support are just a few.

You will have to decide who you do and do not want to tell about your cancer. There is no right or wrong on this matter. But for those you decide to notify, think ahead about their possible reaction and prepare how you will tell them accordingly. For example, if you think they will get overly distraught, gently tell them you have upsetting news but you would like them to remain calm.

You might consider asking the person if they are in the middle of something else and if so, to contact you later. If they can talk now, ask them to sit down first. If you are calling someone who is in a car, ask them to pull over before sharing your news.

9


Procedural

Communications with Supporters

It isn’t unusual for a large number of well-wishers to try to contact you to express their support. It is a great boost to know that people care, but it can become overwhelming to respond to all of these communications.

Creating a blog on www.CaringBridge.org or another blogging site like www.blogger.com is a great way to manage this correspondence. Write your updates on the blog and direct well-wishers to that site for updates. (This also provides a historical record of your progress.) Or you can use an email distribution list to send one message out to several people at one time.

Set aside a certain time daily or weekly for replying to calls and emails. Avoid responding at any other time. People will understand if you don’t respond immediately. Alternatively, you can designate someone to take these phone calls and email messages and provide updates on your situation to those supporters.

http://www.caringbridge.org/

http://www.blogger.com/

10


Procedural

Delegating

It may be uncomfortable to accept or ask for help, but others often need to do something for you to help them cope with your situation. You will actually be helping them by letting them help you.

Delegate the things that need to be done that you can’t or don’t want to do. You have plenty of other things to deal with, so if someone is willing to cook, run an errand, take messages, etc.; let them help you.

If you know someone is especially good at something, put that skill to use. For example, ask someone with a medical background to join you during your medical appointments to ask questions and take notes.

There are also free resources available to help you. For example, the American Cancer Society (www.cancer.org) offers car rides to appointments and lodging in certain locations when your treatment is far from home.

http://www.cancer.org/

11


Procedural

Saying “Yes” and Saying “No”

Saying “Yes”

Sometimes you may find that people offer extremely generous gifts or levels of support that you are not used to receiving, let alone accepting. They are making these generous gestures because they want to – it makes them feel good to do something really nice for you during a difficult time. Let them. Accept their gifts and be sure to follow up with a thank-you note or card expressing your gratitude.

Saying “No” If people are making demands of you that you simply are not able to do or don’t feel you ought to do, it’s okay to refuse them. Fighting cancer takes a lot of effort and energy. It is fatiguing. You have to be a little selfish during this time and focus on what your body and your psyche need to cope with your cancer.

12


Procedural

Getting Organized

Find ways to organize anything relating to cancer. These include:

Research you’ve collected on your cancer

Notes from medical appointments (organized by provider and date)

Medications and dosage

Calendar of appointments (past and future)

Medical bills (organized by health care practitioner and/or treatment) and

Support resources you’ve identified.

Some examples of approaches for organizing these materials are file folders, binders, online bookmarks for favorite website pages, and appointment books.

13


Procedural

Resources to Get Organized

The American Cancer Society offers a Personal Healthcare Manager kit, which is an accordion binder with tabs and forms for tracking various aspects of your cancer. (Call 1-800-227-2345 to request a kit.)

The Livestrong Foundation has a planner and journal that is available for free from their store (http://www.livestrong.org/Get-Help/Learn-About-Cancer/LIVESTRONG-Guidebook).

You may also want to inquire with your health care facility or insurer to find out if they offer a case manager who can assist you in tracking and paying medical bills and help you identify other cancer support resources available to you.

http://www.livestrong.org/Get-Help/Learn-About-Cancer/LIVESTRONG-Guidebook

http://www.livestrong.org/Get-Help/Learn-About-Cancer/LIVESTRONG-Guidebook

14


Procedural

Preparing for the Worst

While it is important to remain optimistic, preparing for the worst provides a lot of peace of mind. This is true whether you have cancer or are completely healthy.

Some preparations to consider are:

Create or update a Will

Create a Durable Power of Attorney

Provide written instructions on financial accounts, passwords and where to find important papers

Organize financial documents by type, institution, and statement dates

Discuss or write down your wishes for funeral or other end-of-life arrangements

Tell a trusted person or attorney where to find all of the above.

The Five Wishes workbook at http://www.agingwithdignity.org/catalog/product_info.php?products_id=28 can help you convey end of life wishes and is recognized as a legal document in most states.

http://www.agingwithdignity.org/catalog/product_info.php?products_id=28

http://www.agingwithdignity.org/catalog/product_info.php?products_id=28

15


Procedural

Your “Emotional” Affairs

As important as it is to prepare your financial affairs, it is equally if not more important to address your emotional affairs – taking care of the relationships with those you care about.

Create a “Loving Will” – a video where you tell loved ones how you feel about them, what you wish for them, or your favorite memories with them. They will treasure this. No matter what the outcome from your cancer is, this will be something special for loved ones to see someday.

For information about the power of a “loving will” and assistance with creating one, check out www.lifechronicles.org.

http://www.lifechronicles.org/

16


Procedural

Striving for “Normal”

As best you can, try to maintain normal routines and activities. Don’t allow yourself to become a victim of cancer.

If your health care practitioner approves and you feel physically up to it, continue to work, even if it is a lighter schedule, unless the work environment is too stressful.

Participate in family gatherings and visit with friends, even if it is just for a short time.

Attend interesting local events and continue pursuing areas of interest and hobbies.

Stay engaged with the rest of the world around you. Whatever you were doing to stay updated on current and local events, try to keep doing it, even if it is less frequent.

Not only do these activities help you feel more normal, they provide good distractions!

17


Physical

18


Physical Physical

Aligning Mind, Body and Spirit

Think of your physical body and your mental and spiritual self as working together to help you get better. You need to align all aspects of yourself in the same direction toward healing.

Negative thoughts that your body let you down or you must have done something to deserve this are destructive to your healing and have no redeeming benefits. Focus on what you can think, say, and do that will help you get better.

19


Physical

Being Kind to Your Body

Tune in to what your body needs. This could be anything from a stretch or exercise to a food or drink craving.

When you are feeling fatigued, think about what’s best for your body – taking a nap or fighting through it – and don’t worry about what anyone else expects you to do under these circumstances.

If you are in significant pain at any time, ask your health care practitioner for pain management medicine or treatments available to alleviate the pain. Suffering with pain unnecessarily only creates more stress for the body.

It’s also good to nurture yourself and your body once in a while with an indulgence like a massage or a bath.

Notice and appreciate even the smallest signs of improvement to your health or symptoms any time they occur.

20


Physical

Helping Your Body Fight

To the extent you are able, engage in activities that will nurture your body’s strength, stamina and flexibility. This can be in the form of exercise, sports, yoga, Pilates or something else that keeps your body moving and continually getting better. Check with your health care practitioner before starting a new activity to ensure it is appropriate for your situation.

Whatever you do, try to get into a regular routine so you are doing one or a combination of these activities several times a week. If you miss a few days, don’t feel guilty – just get back into your routine as soon as you can.

21


Physical

Physical Changes

Stay tuned in to any emerging signs of trouble or distress that may occur in your body. If you find them, look for patterns such as when they occur and the extent or intensity of the change. Share these observations with your health care practitioner sooner than later.

If your physical appearance, strength, stamina or abilities change as a result of cancer or its treatment; find available resources to help you address these changes such as a physical therapist, fitness trainer or prosthetic or wig provider. Your health care practitioner may be able to help you identify these resources and some may be provided for free by your health care institution or a local charity. When you’ve done all you can and your condition continues to be different than before your cancer, work on trying to make peace with these changes and take one day at a time. It may be helpful to work with a therapist or counselor to do this.

22


Physical

Food Inclusion

What you eat may play a role in fighting cancer.

If it is too difficult or stressful to convert to an entirely healthy diet, consider at least trying to incorporate significant amounts of healthy foods into your diet such as fruits, vegetables and whole grains.

Be moderate in consuming unhealthy food, making it a treat to really savor in small amounts. Try to avoid the worst offenders to healthy eating like fried, sugary and fatty foods.

If you can afford it, consider buying organic foods to avoid pesticide residue. The Environmental Working Group (www.ewg.org/foodnews/summary/) provides a list of the fruits and vegetables with the most and least pesticides for useful reference.

http://www.ewg.org/foodnews/summary/

23


Physical

Hydration

Drinking a lot of liquids, especially water, can make a big difference in both how you feel and how quickly and fully you heal. You want your body to be a well-oiled machine so it can work efficiently in battling the cancer. Drinking a lot of liquids also helps the body dispose of toxins in the system more readily.

One other bonus – being well hydrated keeps the blood flowing better in the veins which means fewer unsuccessful needle sticks for blood draws, injections and infusions!

24


Physical

Using Your Breath

Focusing on your breathing can be very helpful when you are in a stressful situation or in pain. It is also an excellent source of relaxation.

By trying to breathe into your diaphragm or belly instead of the chest, you get more oxygen into your whole body more efficiently. Pay attention to the inhalations and exhalations and try to make each one last longer. This will help you calm yourself and focus on your breathing instead of what is stressing you.

For a more in-depth explanation of deep breathing, also called belly breathing, see the description on the Stop and Breathe website (www.stopandbreathe.org/healthy-breathing.html).

http://www.stopandbreathe.org/healthy-breathing.html

http://www.stopandbreathe.org/healthy-breathing.html

25


Physical

A Quiet Place

Locate or create a place where you can escape from the “real world” for a time and forget about all that you are dealing with for awhile. It may be a place where you can close your eyes and peacefully drift off to sleep, pray or meditate.

It is helpful if the place is nearby and easy to go to whenever you need some time alone. It can be inside – for example, a bedroom – or outside, like a nearby forest clearing or a garden bench.

When you are there, limit outside contacts. This is a place for you and your inner world only.

It may be hard at first to give yourself this quiet time, but if you think of it as part of your healing process, you can work it into your other routine activities.

26


Physical

Treating Yourself

Grant yourself some indulgences every so often, especially after cancer treatments. Both your mind and body can be rejuvenated by a little treat.

Keep an ongoing list of things you’ve always wanted to do or you’ve just decided you want to do – both large and small activities and near or far locations. The list can include trips you want to take, special events you want to see, people you want to visit, or hobbies you want to do. Make the list accessible for easy reference and adding more items. Start doing the things on the list right away and check them off as they get done.

27


Psychological

28


Psychological

Moving Forward

Looking back instead of forward is going in the wrong direction.

Unless it contributes to a treatment for your cancer, trying to figure out why this happened to you or what you did to get cancer is a waste of time and effort. Focus on what you can do to heal now.

Similarly, focusing your thoughts on memories of your cancer-free past will do nothing to help you improve your current situation. Focus on what is happening now and going forward. Let the past go.

29


Psychological

Positive Mindset

Even when the news seems terrible, look for something hopeful, then grab on to it and focus on it. Staying hopeful improves your outcome and your day-to-day living experience.

There is no downside to remaining hopeful. The worst case scenario is that your hope was misplaced and in that case, what have you lost? Nothing. Would anything in your life or health improve if you are more pessimistic (or some would say, realistic)? Not likely.

Positive energy is life giving. Negative energy is life draining.

Find hope in any form you can. Inspiring news stories, books and websites are possible sources. You can also use your network of friends to find someone who has survived cancer.

30


Psychological

Celebrating

A trick to staying positive is looking for good things in life and celebrating them. Even the smallest things can be cause for a celebration.

At a minimum, make a conscious attempt to appreciate each good thing you come across in your daily activities. Savor happy times and special moments in your life.

Appreciate and pay attention to the good attributes in people. Keep your expectations of others moderate so you won’t be disappointed and you might be pleasantly surprised.

This positive approach leads to a richer and happier life.

31


Psychological

Cancer “Gifts”

Although nobody welcomes a cancer diagnosis, you may actually discover some good things that come from it.

Some positive aspects of cancer are a realization of how special and important you are to other people; the kindness and generosity of people who want to help you; and the new way you can experience the beauty that is all around.

Ironically, cancer can be life-affirming.

32


Psychological

Managing Your Expectations

While hoping for the best, you should still prepare for the worst. This allows you to better cope with bad news if it does occur.

By preparing for worst case outcomes, you allow yourself more time under less stressful conditions to mentally process all possibilities. Also, it helps to consider all possibilities so your spirits aren’t completely crushed if there is bad news.

Regarding final arrangements, we are all going to die someday. Even if you survive and live a long and happy life, at some point it will end. By preparing for this eventuality, you give yourself peace of mind that these issues have been attended to and you also relieve a considerable burden for those surviving your death.

33


Psychological

Worrying

A certain amount of worry is inevitable. Trying to pretend you have no worries also can lead to stress. However, excessive worrying about things you cannot control is a waste of precious energy that doesn’t improve outcomes and only creates added stress.

Limit the time spent worrying or having depressing thoughts to no more than 10-15 minutes per day. Afterward, purposefully redirect your thoughts to more positive and productive things.

A trick you can use is to visualize a space that you designate in your mind for worrying. Next, visualize a space for being positive and hopeful. Finally, visualize moving from the worry space to the hopeful space.

One of the most worrisome periods for most cancer patients is just before having scans to determine the cancer’s status. Try to do whatever relaxes you most during this time, whether it is listening to music, praying, talking to a friend or something else.

34


Psychological

A Safe Outlet

Find an outlet where you can confront and honestly vent your raw emotions.

This could be writing in a journal; singing, dancing, playing an instrument, or playing a sport.

It could also be talking to someone who can handle the hard thoughts and emotions you have without trying to calm or dismiss them.

You can find another cancer survivor who understands what you’ve been through. There are cancer support organizations like Imerman Angels (http://imermanangels.org) that will pair you with a survivor who had the same cancer you do.

http://imermanangels.org/

35


Psychological

Visioning

When having a difficult time during a treatment or procedure, imagine a scene that symbolizes a positive outcome. For example, whole brain radiation or chemotherapy can be thought of as a controlled burn in a forest full of invasive species. The burn destroys both good and bad growth, but the healthy, indigenous species grow back while the unhealthy invasive species do not.

Visioning during a procedure is also a welcome distraction from the procedure itself.

36


Psychological

Eye on the Prize

Ask yourself, “What makes me want to stay alive?” Think about what is so important in life that you don’t want to miss it. Your answer to this question identifies your inspiration to keep living. Then identify some physical symbol of this inspiration that you can view on a frequent basis. Some examples are a picture of a loved one, a piece of art, or an object that you or a loved one created.

This will help focus and motivate you to keep fighting for your life. You can think of it as “keeping your eye on the prize.”

37


Psychological

Visible Support Reminders

Collecting and displaying notes, cards, pictures or other symbols of support from others can remind you that you are not alone in your fight with cancer.

You can add motivational quotes, prayers, magazine articles or newspaper clippings in your collection for further inspiration.

Consider using a bulletin board, scrap book, or even a designated inspiration wall to easily view your collection.

38


Psychological

Tending to Important Relationships

Tell the important people in your life what you love about them and how they impact your life. This will make both of you feel good.

Make peace with people who matter to you but with whom you are in conflict. There is a lot of stress in holding on to resentment. Forgiveness is freeing to the Forgiver even more than the Forgiven.

Occasionally there are times where peace with someone cannot be achieved, regardless of your efforts. In that case, accept that for the way it is, and let it go.

39


Psychological

Laughter

A sense of humor goes a long way in coping with the ups and downs of cancer. It helps to keep things in perspective, too.

Laughter is known to reduce stress and improve health, so give yourself and others permission to laugh as part of your healing process. Find something to laugh about whenever you can.

40


Psychological

Helping Others

Helping others can be very therapeutic. Performing good deeds for others, whether on a large or small scale, makes you feel good about yourself. As an added bonus, you might forget about your own problems while you focus on other people.

41


A Note from the Author

I am fortunate. My circumstances are uniquely accommodating to managing my cancer. I have a very loving and devoted husband; a tremendous family that rallies in a crisis; caring friends; and an actively supportive community. (My heartfelt thanks to all of these people.) I have good health insurance and the financial means to cover the costs of cancer treatment. My consulting work gives me the flexibility, time and balance to keep a light work schedule when needed.

I did not suffer from some of the more grueling side effects of cancer treatment. I had access to some of the best oncology practices in the country. I was in remission in less than eight months.

I don’t take this good fortune for granted. The inspiration for creating this booklet is to use the benefit of my good results to help others in their fight with cancer. I hope you find it useful as you negotiate your own path to managing cancer.

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A survivors quick tips to managing cancer booklet 6 1 14