Living with Cancer

TABLE OF CONTENTS

Dealing with my own personal diagnosis of cancer

When I was first diagnosed with cancer (Multiple Myeloma) I was numb. I was maintaining my composure as the oncologist explained my condition, what further tests needed to be done and that this type of cancer was, yes, a death sentence. It is a terminal/fatal cancer with a 2-8 year life expectancy. What do you do when you are presented with this kind of information? You do go numb. I had so many questions, but the words just didn’t want to come forward. My life was over in a heartbeat. Life changed for me in that moment. What was I to do? Do I fight for my life? Or do I pack it in right here and now?

Once the shock was over and I made a very conscious decision to live my life and fight this disease–I had what I needed to move forward–a positive attitude.

With my circumstances that I not only had cancer, but a spinal cord injury that was leaving me paralyzed and in a wheelchair for the rest of my life; I was flat on my back in the hospital and the only options that I had before me were all the standard mainstream medical procedures of surgery, radiation and chemotherapy. What was I to do? Since I chose life, I felt that I had no other option but to accept this method of treatment. I was determined to live and fight this disease!

The biggest concern that I had was about my family, and it still is so. I needed to prepare for the worst case scenario. I would need to review and renew my will and other legalities related to dying. I needed to make provisions for my family. I was determined not to be a burden on them alive or dead. I also needed to accept death and not let fear rule my spirit or my decisions. In the end—life goes on!

“My first oncologist told me:
‘When you read about the statistics/prognosis; remember that you are NOT a statistic, you are YOU and you are unique.’
The prognosis I later read about was not good, so his statement always gave me hope.
I have survived over 10 years. The prognosis was 2-3 years. He was right!”
— Shared by Bobbie Harrington Henry, Caring Bridge Community

What do the experts have to say about living with cancer?

Everyone reacts in their own way when first diagnosed. When you learn you have cancer, you may feel like your life has been turned upside down. When hearing the news, some people find it hard to breathe or feel like their head is spinning. Many people say that when they heard “you have cancer,” they went numb and didn’t hear a word the doctor said after that. You might think that there has been some mistake or it may take some time to believe what the doctor tells you, especially if you don’t feel sick.

The days and weeks right after a diagnosis can be very stressful. Sometimes extremely overwhelming. Some say the time after diagnosis and leading in to treatment was the worst period they went through. There are lots of questions to be asked and answered.

For most people, cancer changes everything. You might feel like you have to act as quickly as possible, like it’s an emergency. In other ways, time might seem to stand still. Many feel pressured by their oncology team to proceed immediately with treatment.

“Once you choose hope, anything’s possible.”
— Christopher Reeve

Why does everyone asks the question—why me?

Many people wonder why this is happening to them or what they could have done in the past so that they wouldn’t have cancer now. For some people, looking for an answer to “why me?” can cause sleepless nights and soul searching. Others find that it doesn’t really matter why something has happened—how best to deal with it is more important. Worry can drain people of energy that is needed to help cope with the illness.

The statement, “why me?” is often accompanied by bitterness related to your life, the cards you were dealt; or to the regrets you may have in your life; or unfinished business; people you need to forgive; gratitude that remains unsaid. This is where your own personal journey takes place and the rewards can be humongous. This is where your journey into self discovery becomes. This is your time to heal. This is your time to reconnect or deepen your connection to faith. Do not be afraid to let go and let live.

“Cancer is only going to be a chapter in your life, not the whole story.”
– Joe Wasser

How to adjust to the “new normal” ?

Those who have gone through cancer treatment describe the first few months as a time of change. It’s not so much “getting back to normal” as it is finding out what’s normal for you now. People often say that life has new meaning or that they look at things differently. Your new normal may include:

Changes in the way you eat and the things you do
New or different sources of financial, social, or emotional support
Needing help doing things you used to do without problems
Being left with a body that does not function like it used to
The after affects of surgery, radiation and chemotherapy
Overwhelming fatigue, weakness and brain fog
Permanent physical scars on your body
Emotional scars from going through so much

You may see yourself in a different way or find that others think of you differently now. You may feel self conscious about being out in public, being around family and friends. You may not want to talk about your cancer diagnosis. Change is not easy. Be kind to yourself during this time.

Whatever your new normal may be, give yourself time to adapt to the changes. Take it one day at a time. Stay strong. Have a positive attitude. Eat healthy foods. Reconnect with your faith.

“We have two options, medically and emotionally: give in or fight like hell.”
— Lance Armstrong

How to get in touch with your feelings about cancer?

Just as cancer affects your physical health, it can bring up a wide range of feelings you’re not used to. Having cancer can make many feelings seem more intense. These feelings may change daily, hourly, or even minute to minute. This is true whether you’re currently in treatment, done with treatment, or you are the friend or family member of someone with cancer. These feelings are all normal and they are very real.

Learn how to recognize the wide range of emotions you could be experiencing, including:

Why me?
Denial
Anger
Bitterness
Fear
Worry
Sadness
Depression
Stress
Anxiety
Overwhelmed
Hope

“It is during our darkest moments that we must focus to see the light.”
— Aristotle

Talk to Friends and Family About Cancer

How to talk to your friends and family?

Talking about your cancer can help you deal with all of the new emotions you are feeling. Consider letting your family and friends know about your diagnosis. It may affect them as much as it affects you. The people in your life will be feeling many emotions just as you are. They too will have many questions that need answers.

Once people learn of your cancer diagnosis, they will ask you how they can help you, and many may want to help but don’t know how to ask or speak to you. Help your friends cope with the news by letting them help you in some way. For example, ask them:

Drive you to medical appointments
Drive you to the store to do shopping or errands
Pick up items from the store for you
Help you with housecleaning
Help you with meal preparations
Read, play games, watch TV or do other things together
Drop by for conversations and companionship

“Life isn’t about waiting for the storm to pass…
It’s about learning to dance in the rain.”
— Vivian Greene

Emotional Support for Cancer

What are some tips for coping with feelings and emotions?

There are many ways to deal with your emotions. The most important thing if you feel overwhelmed with emotions is not to hide away, become reclusive or hold your emotions in. Let your emotions out—let life in:

Talk openly about your feelings, no matter what they are
Stay active and eat balanced healthy meals
Treat yourself to things you enjoy
Take a nap, a hot bath/shower or a spa treatment
Go to a movie with friends or family
Go out to dinner with friends or family
Go to sporting event with friends or family
Take part in a community event
Get help with everyday jobs like cooking and cleaning
Don’t try to do it all yourself.
Don’t try to force yourself to be happy
Don’t try to do too much in one day
Practice meditation and mindfulness
Connect with your faith, whatever that might be
Find your own unique sense of hope

“Control what you can control, your mind and attitude…
Cancer didn’t bring me to my knees; it brought me to my feet.”
— Michael Douglas

How and when to get your affairs in order?

Many of you may have addressed this issues in the past, but it is never too late to revisit them, especially when you are diagnosed with a chronic illness or cancer. These issues should be discussed with someone with the legal authority to advise you, such as a lawyer or paralegal. Once the dust settles after your diagnosis and you are thinking straight, these issues should be addressed. You should also discuss these matters and your decisions with your family or the person that you choose to make executive decisions on your behalf.

You will need to:

Make a will
Designate someone who will have “power of attorney” meaning someone that will manage your financial affairs when you no longer able to.
Designate someone who will have “power over your health care.” This person is often the same as the one that will handle your financial affairs.
Outline your beneficiaries. What and to whom you wish to leave things of value to, such as a wedding ring to a daughter, or a vehicle to a son, or investments to grandchildren for their education. Who will inherit your property? Who will inherit your debt?
Investigate a “living trust” which will help avoid “probate.”
Consolidate all of your important papers and documentation in one place where your power of attorney can access. These items may include the dead to your property(s), life insurance, banking, investments, stocks, bonds, ownerships of vehicles or other equipment, and so the list goes on.
Make your funeral and/or celebration of life known to your executor and to your family. Funeral homes all offer pre-arranged funeral arrangements to ensure that you get what you want in the end.

“Cancer is messy and scary. You throw everything at it, but don’t forget to throw love at it.
It turns out that might be the best weapon of all.”
— Regina Brett

How does one deal with remission and the fear of recurrence?

When your treatment is finished, you will probably be happy to be done so you can get back to how things used to be. Cancer remission is when the signs and symptoms of cancer have lessened or are undetectable. At the same time, a diagnosis of remission does not mean the cancer is gone, and that leads to a life of living in fear of the cancer coming back. Living with the fear of cancer coming back is the most common emotional challenge people face after cancer.

Cancer remission is determined by blood tests, imaging tests, or a biopsy, depending on the type of cancer. You will have been through all of these test with your original diagnosis. Doctors will call a recurrence if there have been no signs of cancer for a year or more.

What are the different types of remission?

Partial. A reduction of at least 50% in measurable tumor size or cancer cells.
Complete. All detectable evidence of cancer is gone.
Spontaneous. Cancer goes into remission without therapy that’s considered adequate to otherwise lead to remission. This is rare and usually happens after a fever or infection.

Because there are cancer cells still in your body, even when you are in remission, you might require treatment during remission. This reduces the risk that the remaining cancer cells will start growing again.

“Above all, cancer is a spiritual practice that teaches me about faith and resilience.”
— Kris Carr

What are the ways to stay healthy during remission?

Supporting your overall health is the best way to reduce your risk of a recurrence or a second cancer. This means:

maintain a moderate weight
eat a balanced, nutritious diet with lots of fruits, vegetables, and whole grains
staying physically active, as much as you can
if you smoke; quit smoking
drinking alcohol in moderation; this means no more than one drink a day for women and no more than two drinks per day for men
take care of your mental health, making time for hobbies you enjoy, spend time with family and friends, or join a support group

The most common type of treatment during remission will be a form of maintenance chemotherapy. This is chemo that’s given regularly to stop the cancer from spreading. Maintenance therapy should not make you feel worse. If you find that the side effects start to become too much for you, talk with your doctor. They may take you off maintenance therapy or alter the dosage.

Maintenance therapy may also become less effective over time, in which case your doctor may stop the therapy to help make sure your cancer doesn’t become resistant to chemo.

“Cancer is not a death sentence, but rather it is a life sentence; it pushes one to live.”
— Marcia Smith

How do you cope with a cancer recurrence?

A cancer recurrence can bring back many of the same emotions you felt when you were first diagnosed with cancer. Remember that you know more the second time around. Knowing more about cancer and your treatment options can help reduce your anxiety. Think about how much you knew about cancer at your first diagnosis and compare that to what you know now. Treatments may have improved. There may be newer drugs or newer methods for treating your cancer or managing side effects since your first diagnosis. Rapid developments in cancer treatment may open up possibilities that had not been available to you previously.

What types of recurrence are there?

Local. The cancer comes back in the place it was originally found.
Regional. The cancer comes back in lymph nodes and tissues near the original cancer site.
Distant. The cancer comes back in other places throughout the body (metastasized).

You've worked closely with members of your health care team, and you know your way around the hospital or clinic. This should help you feel more comfortable that you did before, and you know what to expect. You have established relationships.

Since you have done this before, you know what you need, whether it is time alone or you prefer having someone nearby. Draw on your experience and plan ahead. You know all the strategies to get through the next round of cancer treatments. Meditation, yoga, physical activity, diet, nutrition, journaling, spending time with family, friends, community or connecting with your faith.

Some people say that a cancer recurrence can be especially devastating because the strong support system they had after their first cancer diagnosis sometimes evaporates when the cancer recurs. Don't be afraid to reach out to friends and family again and communicate how they can support you.

“When you die, that does not mean that you lose to cancer.
You beat cancer by how you live, why you live and in the manner in which you live.”
— Stuart Scott

What is the relative survival rate for cancer?

A relative cancer survival rate compares people with the same type and stage of cancer with people in the overall population. If the 5-year relative survival rate for a certain cancer is 20 percent, it means those who have that cancer are about 20 percent as likely to live 5 years after being diagnosed as people who don’t have that cancer.

These statistics don’t take into account whether someone is in remission or still undergoing treatment, so it’s not quite the same as being in remission. But since remission doesn’t mean you’re cured, these statistics can give you an idea of the outlook for that type of cancer.

The outlook depends mainly on the cancer type. The most common statistic you’ll see is a 5-year or 10-year survival rate, which is the percentage of people with that type of cancer who are still alive 5 or 10 years after diagnosis.

“Cancer is a journey, but you walk the road alone.
There are many places to stop along the way and get nourishment
— you just have to be willing to take it.”
— Emily Hollenberg

What are the signs of end of life?

As a person gets closer to death, their bodily functions start to slow down. It is important to understand that every situation is different. Having one or more of the signs below does not necessarily mean the person is close to death.

Withdrawal: The patient may become less interested in the world around them. They may lose interest in activities that they once enjoyed. They are no longer interested in talking or being social. They become irritable or restless.

It’s normal to be upset when a loved one withdraws from you, but try not to take the withdrawal personally.

Drowsiness: As people get closer to dying, they may sleep more, become drowsy or be difficult to wake. They may fall asleep while talking. A person may slowly lose consciousness in the days or hours before death.

Eating and drinking less: As death nears, the body slows down. The body does not need as much food or fluids as before. A person nearing death may also have problems swallowing. Don’t force them to eat or drink if this is the case. Forcing them to eat or drink could cause choking or may increase their risk of a lung infection.

You can offer liquids often, such as sips of water, ice chips or juice. Mouth swabs or moisturizing sprays can help keep the mouth moist. Lip balm or lubricant can be used to keep their lips moist.

Changes to breathing: Breathing changes as death approaches. Sometimes breathing may stop for several seconds at a time and then start again. Irregular breathing pattern, called Cheyne-Stokes respirations, is common in people who are dying. Breathing is very deep and rapid, followed by short breaths and then a period of not breathing with this condition.

Mucus can pool in the back of the person’s throat, causing a rattling or gurgling sound while breathing. This noise can be very upsetting to family members and visitors, but the person is usually not aware of the sound.

Sometimes lying the person on their side or putting pillows under their head and behind their back may help make breathing easier. A humidifier to moisten the air may make breathing more comfortable.

Suction may be necessary to remove the excess mucus. Medicines may be prescribed to reduce the amount of mucus or give oxygen therapy.

Loss of bladder or bowel control: Some people may lose control of their bladder or bowels because muscles in the pelvis become relaxed. This is called incontinence. Make sure your loved one is dry and clean. Diapers and pull-ups are ideal for incontinence. Incontinence bed pads can also be used.

Your healthcare team may use a tube called a catheter to drain urine (pee) into a bag. The urine may look darker than normal. If a person isn’t eating or drinking very much, there will be less urine and fewer bowel movements (poop).

Changes to the skin: As death nears, the skin colour will change. It may look pale, blotchy or bluish. It may become thin, dry and flaky. There may be red areas over the joints of the hands and legs. Hands or feet may feel cool to the touch, but the person doesn’t feel cold.

Light covers or blankets might make your loved one feel more comfortable. Avoid using electric blankets or heating pads, which may cause burns.

After bathing, massage a gentle, non-perfumed moisturizer into the skin. Avoid rubbing reddened areas or where their skin is thin.

Mouth problems: With advanced cancer it is common for the patient to have a dry mouth or a sore mouth and throat. These problems can be caused by breathing through the mouth, rather than the nose, or from drinking less.

Nausea and vomiting: Many people with advanced cancer can have problems with chronic nausea and vomiting. Nausea and vomiting may be caused by pain-relieving drugs, constipation, cancer growth, blockage of the bowel or because digestion slows down.

Pain: Most pain can be managed. Drugs to treat pain can be used even if a person is unconscious. Drugs help to keep the person comfortable. Signs of pain in someone who is unconscious are frowning, grimacing or tension in the skin in the forehead.

Pressure sores: Sores develop when someone stays in one position too long. Following these tips may help prevent or relieve pressure sores:

Turn patient frequently in bed
Use pillows under joints to help relieve pressure
Protect pressure areas with foam pads, sheepskins or special mattresses
Make sure bedding is not wet, wrinkled or irritating to the skin
Keeping the patients skin clean and dry and check skin daily

Delirium: A person who is dying may become restless, anxious or confused. This confusion and disorientation is also called delirium.

People with delirium may not know loved ones or friends, what day or time it is or where they are. Some may see and speak to things that others can’t see (hallucinations). They may try to get out of bed or shift around in bed more. Their sleeping cycle may change so that they sleep during the day and are awake at night. A person with delirium may make jerking movements with their legs and arms that they can no longer control.

Delirium can be upsetting to family members, especially if their loved one becomes aggressive or unkind. Try to remember that people who have delirium aren’t aware of how they’re acting, and their actions do not reflect their true feelings or beliefs.

Temporary improvement: Sometimes people who are near death have a brief and unexpected improvement. They are more alert and can interact with those around them. Family members might hope that this improvement means that the person is going to get better and that the prognosis was wrong.

As hard as it is, it’s important to remember that these changes are only temporary and the person will get worse again. It is important to share feelings or thoughts with the dying person and make a deeper connection in the final days or hours before death.

“God didn’t promise days without pain, laughter without sorrow, or sun without rain,
but He did promise strength for the day, comfort for the tears, and light for the way.”
— Unknown

Source: Canadian Cancer Society
Source: American Cancer Society
Source: Health Line
Source: The Mayo Clinic
Source: Caring Bridge Community
Resources: Books—Health