Surviving Cancer - You are Alive


 

Chapter 6 - Surviving Cancer

Chapter 7 -Toolkit for Healing

Carers guide and care

   



                 Live fully after cancer

Let us see clearly through the gifts of our tears.


The Inca of Peru had an expression, "The flowering of my tears" which expressed all the growth potential of understanding, compassion and appreciation, after a long period of suffering and grief. During the long, dark night of sorrow, our tears water the seeds for the flowering of our spirit to grow.
       

Congratulations on Finishing Your Cancer Treatment


The end of cancer treatment is often a time to rejoice. You are probably relieved to be finished with the demands of treatment and are ready to put the experience behind you. Yet at the same time, you may feel sad and worried. It's common to be concerned about whether the cancer will come back and what you should do after treatment.

When treatment ends, you may expect life to return to the way it was before you were diagnosed with cancer. But it can take time to recover. You may have permanent scars on your body, or you may not be able to do some things you once did easily. Or you may even have emotional scars from going through so much. You may find that others think of you differently now - or you may view yourself in a different way.



One of the hardest things after treatment is not knowing what happens next. Many cancer survivors have told us that while they felt they had lots of information and support during their illness, once treatment stopped, they entered a whole new world - one filled with new questions.

Many cancer survivors have a range of needs, some of which only emerge long after medical treatment finishes, which require input from a range of professionals with the aim of improving quality of life and the ability to cope with life after cancer.

While cancer is a major event for all who are diagnosed, it brings with it the chance for growth. As hard as treatment can be, many cancer survivors have told us that the experience led them to make important changes in their lives. Many say they now take time to appreciate each new day. They also have learned how to take better care of themselves and value how others care for them. Others draw from their experience to become advocates to improve cancer research, treatment, and care. 


      


A survivor is “a person who continues to function or prosper in spite of opposition, hardship or setbacks.” The implied element of importance in the definition is “prosperity,” a term that describes not only success, but also a sense of flourishing and thriving. These are distinguishing factors that set survivors apart. For surviving is far more than just living and breathing. It requires courage, fortitude and a willingness to see beyond what one’s eyes are revealing. It demands a connection with one’s inner voice, listening and discovering what it takes to move beyond adversity into an unexplored reality.

Survivors heed an inner calling to put back into their lives what is missing the foundation of healing. Some reestablish or develop a spiritual focus. Others strengthen family bonds. Many set forth to do what they’ve always dreamed of, yet never made the time.
       
On the surface it seems that for a person facing a serious illness, time is not a luxury. This belief tends to separate those who become survivors from those who do not. As a cancer survivor, your life has been changed significantly. You've adapted to a major change in your health status and how you view your life and being healthy. You may have completely changed your routine at home and at work. What you may have considered  "normal" lifestyle and habits probably are much different now than prior to your diagnosis.  

It's not usually just only one thing, but a combination of things that give people strength. I'm always so touched when I reflect on what it means to be a survivor for each individual. Everyone has their own unique way of dealing with the impact that cancer has had on their life. My first thought is that I didn’t want just to cope with cancer. I wanted to do so much more! I wanted to thrive, not just survive. Had I not been diagnosed with cancer, I would not have gotten to do all of the wonderful things I have done or met all of the wonderful people I have had the opportunity to meet.


     


When you began your cancer treatment, you couldn't wait for the day you would finish. But now that you have completed your treatment, you aren't sure if you're ready for life as a cancer survivor. With your treatment completed, you will likely see your cancer care team less often. Though you, your friends and your family are all eager to return to a more normal life, it can be scary to leave the protective cocoon of your health care team, who supported you through treatment.

Everything you're feeling right now is normal for cancer survivors. Recovering from cancer treatment isn't just about your body - it's also about healing your mind. So take time to acknowledge the fear, grief and loneliness you're feeling right now.
 
Every person who overcame cancer needs to go through an extraordinary process of re - adjustment after the treatment. Many survivors of cancer experience some form of blues, in addition to periods of relief and joy, for the first several months after treatment. Trying to grit your teeth and get through it alone is an invitation to long-term depression. At the very least, you will suffer more than you need to.
 

       

 
Recovery is a journey, not a destination

 
Recovery from cancer is a deeply personal, unique process of changing one’s attitudes, feelings, goals, skills and/or roles. It is a way of living a satisfying, hopeful and contributing life even with the limitations  your illness may has caused. Recovery involves the development of new meaning and purpose in one’s life as one grows beyond the "catastrophic" effects of illness. It's taking back control of your live. There are no rules or road maps for this trek...everyone’s journey of recovery is unique. It is an individual path that starts with the notion “It’s time to get on with my new life!
       
Cancer survivors end treatment and begin the dual journey that combines physical and psychological elements as they try to find the “new normal” of life after cancer. Physical challenges, depending on treatment, may range from long-term disabilities related to physical losses or more intangible issues, such as chronic pain, fatigue, nausea, eating complications, anemia, memory loss, lymphoedema, cardiopulmonary symptoms and nerve damage.
The goal for patients should be to find the best physical solutions, which go hand-in-hand with emotional healing, before accepting the new normal. Each patient moves at his or her own pace through the individual labyrinth of physical and emotional challenges that their cancer diagnosis presents. These challenges are further complicated by issues of family support, employment and life-style changes that may be necessary to accommodate short-term or long-term changes.
 
When you are emotionally at a low ebb,you’ll also be physically low. Focusing on them at the same time helps.
 
Some people find that they’re facing new challenges and dealing with feelings they may not have had before. The period after treatment is often a time when their feelings come to the surface. This can come as a surprise to both the person having had treatment and those around them.
      
Many cancer survivors find that one barrier to a smooth transition out of cancer treatment is the reaction they get from friends and family. Your friends and relatives may also think that life will just settle down again and go back to how it was before the cancer diagnosis. But the reality can be different. Chances are you have noticed that some of your relationships have felt strained since you ended your cancer treatment. You've probably felt alone and sad as you've seen people turn away from you or otherwise treat you differently from how they had before. Navigating relationships is a challenge for cancer survivors transitioning to life after treatment. 
Since rehab has not traditionally been part of the cancer care continuum, it's not surprising that many people are confused about what it might involve. Cancer rehab is very similar to all other kinds of rehab. The goals are the same - help someone function at the highest possible level by building up their strength and stamina, reducing pain and fatigue, improving problems with balance, gait swallowing, joint range of motion and a host of other problems.
 

In short, rehab is a critical part of cancer care. But, few survivors ever get it. 


   
        
    

 
Your Family

 
The time of Transition can be difficult but also offer wonderful opportunities to reflect on and let go of what is past and prepare for what lies ahead.  
 
When treatment ends, families are often not prepared for the fact that recovery takes time. In general, your recovery will take much longer than your treatment did. Survivors often say that they didn't realize how much time they needed to recover. This can lead to disappointment, worry, and frustration for everyone. Families also may not realize that the way their family works may have changed permanently as a result of cancer. Now that your cancer treatment is over, your spouse or partner might be expecting you to resume those responsibilities you had before you got ill, but you might not feel up to it yet. This can be frustrating for your family member, and you might feel pressured to do more than you can handle.  

Your family, your spouse, may also need help to deal with the changes and keep the "new" family strong.


Some survivors say they would not have been able to cope without their family members and the help they offered. And even though treatment has ended, they still receive a lot of support. For others, problems that were present before the cancer may still exist, or new ones may develop. You may receive less support from others than you had hoped.

Even though treatment has ended, you may face problems with your family. For instance, if you used to take care of the house before your treatment, you may find that these jobs are still too much for you to handle. Yet family members who took over for you may want life to go back to normal and expect you to do what you used to do around the house. You may feel that you aren't getting the support you need. At other times, you may expect more from your family than you receive. They may disappoint you, which might make you angry or frustrated. You may still need to depend on others during this time, even though you want to get back to the role you had in your family before. At the same time, your family is still adjusting. It may be hard for you and your family to express feelings or know how to talk about your cancer.


 Children

How children have been affected by your illness often depends on their age. Younger children may feel that they’re somehow to blame for your illness and feel guilty. Even if you’ve explained the situation when you were first diagnosed, you’ll probably need to go over it again and reassure them that you’re now recovering. Try to talk openly and honestly with your children. Look for ways of getting them involved in your recovery, such as going for walks with you. Explain any physical changes or treatment effects - such as tiredness - that you’re still dealing with. Tell them what you can do and help them to understand that your recovery may take time. Teenagers may find it particularly difficult because they’re going through a lot of emotional changes themselves. You may need them to take on more responsibilities around the home at a time when they’re looking for more independence.


 Friends

Many survivors say that acting cheerful around others for their comfort is a strain. "I don't want to smile any more, just for the sake of smiling, when I feel not up to"  "I don't have the energy to be upbeat all the time"I have heard from many survivors of cancer.

As survivors sort out what matters most, they may even decide to let some casual friendships go, to give more time to the meaningful ones. One cancer survivor found that after cancer, "You really know how many true friends you've got. And they don't stop calling just because they hear you're in remission. They really love you and think something of you." Another cancer survivor found that "letting weak friendships go was hard, but I also got support I didn't expect from people at work and in church."       

Be honest about what you can do and what you can't. If you aren't ready to assume the responsibilities you had around the house before your cancer diagnosis, don't feel pressured to take up those duties too soon. But tell your family what to expect so that they aren't left wondering. When you're ready to take up your prior duties, let your family know that these tasks can help your daily routine feel more normal and help in your recovery.



The completion of your cancer treatment can be sometimes more difficult to cope with than what you had gone through before. You may still feel lonely even if you’re surrounded by family, because it can seem that no-one really understands what you have been through. You may even miss seeing the hospital staff as they will probably have given you support and reassurance at your hospital visits. You are no longer the centre of attention. No longer does your family and friends treat you with the same consideration as they did when you were undergoing treatment. Friends don't come and visit you as often as they had earlier or inquired about my health status. You are mostly left alone, coping with the ‘new’ you. Others around you have remained the same. You have changed forever.

You may have a lot more time on your own now if family and friends are working. They might not realise that you’re feeling alone or they may assume that you’re enjoying having time by yourself. The sense of isolation may be made worse if you find it difficult to talk about yourself and your emotions. It can be hard to talk to others about how you really feel especially if you sense that they think you should be able to get on with life now and ‘feel fine’.

 

 
It is common to have days when you feel less positive or still feel some of the effects of treatment.

To begin with it’s important not to expect too much of yourself and to accept that it takes time to recover. If you think about everything you’ve been through, then it’s not surprising that your recovery is likely to be gradual. Isolation is a common experience, and one that can be helped by talking about it. You may think that your friends and family are too busy to chat, or worry that you might be a burden to them. But you can be the one to make contact and see what can be arranged. Some people find it easier to talk to someone they are not close to, perhaps  with your mentor, in a support group, or with a counsellor.

Some people find it easier to talk to someone they are not close to, perhaps  with your mentor, in a support group, or with a counsellor. Seek out support groups.  


(Link: Cancer patient support group,  Live fully after cancer)    


You'll have times when you feel that people who haven't had cancer can't understand what you're going through. Discuss your feelings with other cancer survivors, whether in a support group in your community or online. Support groups are also available for cancer survivors' friends and family. Suggest these to the people closest to you.


(Link: Cancer patient support group,  Live fully after cancer)    




Physical Changes


You may have new challenges to cope with, such as physical effects as a result of your cancer or its treatment. These can impact on how you feel about yourself (body image) and this in turn can affect your emotions.

If surgery or other treatment changed your appearance, you might feel self-conscious about your body. Changes in skin color, weight gain or loss, the loss of a limb, or the placement of an *ostomy or stoma might make you feel like you'd rather stay home, away from other people. You might withdraw from friends and family. And self-consciousness can strain your relationship with your partner if you don't feel worthy of love or affection.

Take time to grieve.

But also learn to focus on the ways cancer has made you a stronger person and realize that you're more than the scars that cancer has left behind.

YOU ARE ALIVE! When you're more confident about your appearance, others will feel more comfortable around you.

 

Here are some other examples of physical changes:

  • Some women with breast cancer may have a breast or part   of their breast removed.

  • Many people lose their hair due to chemotherapy treatment.   It can take many weeks or months for it to grow back to how it was, especially if they had long hair.

  • Some people may have their voice box (larynx) removed, which will affect their ability to speak and will change how they communicate.

  • Some might have had a surgically-made opening on their abdomen (stoma) to enable them to pass waste such as bowel motions or urine.

  • Sometimes people lose a lot of weight due to cancer or its treatment or they gain weight because of the medicines they have to take. 

These changes can cause people to lose confidence following their treatment. They may be afraid of how others will respond to the difference in their appearance or speech. There are some specialised support groups that may be helpful in this situation, where you can meet with others who have been through a similar experience.

       


Fear and anxiety


The biggest fear is often about whether the cancer will come back. While having treatment, you know that something is being done to stop or slow the cancer. But when treatment is over, it can seem as though nothing‘s happening and the cancer could return. If you have any aches or pains, even in a different part of your body, the first thought can be that it’s somehow due to the cancer. It’s natural to feel this way.

Fear and anxiety are normal reactions. They may be present all of the time or may come and go. These feelings can be very strong and difficult to cope with – you may find that you can’t concentrate, are easily distracted, sleep badly or become irritable with others. 

Fear and anxiety often lessen over time as you get on with activities not related to the cancer. In my opinion, it will help to have small targets to complete each day. This can give you a sense of achievement. It also helps to plan for the future (if you haven't done this throughout your healing time) though some people find this hard as they feel they are ‘tempting fate’, or they’re worried they will end up being disappointed. 

Sometimes the fear and anxiety get worse and can start to affect your normal life. If you think this is happening, you can get help from your previous cancer companion, your mentor, or your homeopath, your GP, your nurse specialist, a counsellor or a psychotherapist.

      


Loss of confidence


You might feel as if others can't understand what you've been through, which makes it hard to relate to other people and can lead to loneliness. Friends and family might be unsure of how to help you, and some people may even be afraid of you because you've had cancer.

Don't deal with loneliness on your own. Consider joining a support group with other cancer survivors who are going through the same emotions you are.

Experiencing cancer can make you feel vulnerable. For a time, your life may be worked around the hospital visits for tests and treatment. It can seem as though you have become dependent on others and that you no longer have control over your life.

Often your social life has to change and this also can affect your confidence as, for a time, you don’t have the normal chit-chat with friends and colleagues. You can still feel tired and stressed after all you’ve been through and it may feel as though things you used to do are now much more difficult.

It can take time after your treatment for your strength to return and for you to feel able to do the things you used to do before your diagnosis. This might be physical tasks such as work, gardening, shopping or housework. Or something like reading a book, or even just making simple decisions. Getting back to these activities will take time and you’re likely to gradually build up your strength and confidence.

Setting yourself manageable goals can help. As you achieve these, so your confidence will grow. You can take back some control in your life by making plans, and this too will help build your confidence.

        


Depression


After treatment some people are physically and emotionally exhausted. This can cause them to feel low at times. Usually, as they begin to get better and find they are able to get on with their usual activities, these feelings will lessen. However, some people find that they don’t feel better and they may have depression. People can sometimes feel guilty about feeling depressed as they think they should be grateful that they’ve completed the treatment.

Some people may have experienced depression while they were having treatment. They may have assumed that once treatment was over, they would feel better. But this isn’t always the case – cancer has a huge impact on a person’s life and it’s not simply a case of picking up from where you were before the diagnosis. So try not to worry if you are feeling low – there’s a lot that can be done to help.


Emotional symptoms of depression can include:


  • Very low moods most of the time
  • Not feeling your usual self
  • Being unable to enjoy things such as eating, seeing people, hobbies or even your own company
  • Losing interest in favourite activities
  • Problems sleeping or waking early
  • Poor concentration and forgetfulness
  • Feeling helpless or hopeless
  • Feeling vulnerable or oversensitive
  • A loss of motivation, unable to start or complete jobs.

Letting your family and friends know how you feel can help them to support you.


It’s okay to still need help and support even though your treatment is over. There are many ways to deal with       depression. People find different things helpful. For some, just talking about their feelings will bring relief. This might be with family and friends, with others who’ve had a similar experience in a cancer support group or through an online social networking site. Complementary therapies, like homeopathy, taking regular exercise, keeping up with your healthy diet, seeing a counsellor can also be extremely useful. Think about which of these might help.

Looking after yourself and getting the support you need is absolutely essential for your complete recovery. Your transition time to "normal" and to integrate the new you into your life can take many month after your treatment has finished. 

       

Uncertainty

Generally we want to know what is likely to happen to us, so that we can plan for the future. But at the end of treatment, there can still be uncertainty even when you’ve been told that everything has gone well. You might find yourself having some of these concerns:

  • What happens now?
  • Will I ever get back to how I was before?
  • Will I get back to work?
  • Will I be able to have children?
  • Will the cancer come back, and if so, when?

Understandably, the last question is probably the most significant. For some people their treatment may be aimed at curing the cancer so they hope that they can put it all behind them. Others may have been told that the cancer is likely to come back, but no-one can say when this might happen. Uncertainty is one of the hardest things to deal with and can cause a lot of tension. You may feel irritable, angry and frightened. It’s difficult to plan when you don’t know what lies ahead. This uncertainty can be very hard to cope with, especially when you’re trying to get back to a normal routine.

There are different ways of learning to live with uncertainty. For many people, taking control of the things they can do something about is helpful. For some people getting back to their usual routine will help, especially as they regain strength and are able to do more of their usual activities. 

       


Your Workplace          

Research shows that cancer survivors who continue to work are as productive on the job as other workers. Most cancer survivors who are physically able to work do go back to their jobs. Returning to work can help them feel they are getting back to the life they had before being diagnosed with cancer.

Some cancer survivors change jobs after cancer treatment. If you decide to look for a new job after cancer treatment, remember that you do not need to try to do more - or settle for less - than you are able to handle. If you have a résumé, list your jobs by the skills you have or what you've done, rather than by jobs and dates worked. This way, you don't highlight the time you didn't work due to your cancer treatment.

Whether returning to their old jobs or beginning new ones, some survivors are treated unfairly when they return to the workplace. Employers and employees may have doubts about cancer survivors' ability to work.

 Take time to grieve. But also learn to focus on the ways cancer has made you a stronger person and realize that you're more than the scars that cancer has left behind.

YOU ARE ALIVE!

When you're more confident about your appearance, others will feel more comfortable around you.

       

Focus on keeping yourself healthy. Eat a healthy diet with plenty of fruits and vegetables. Fit exercise into your day. Go easy at first, but try to increase the intensity and amount of exercise you get as you recover. Get enough sleep so that you wake feeling refreshed. These actions may help your body recover from cancer treatment and also help put your mind at ease by giving you a greater sense of control over your life.



Exercise - Regular exercise increase your sense of well - being after cancer treatment and can speed up recovery.      

With your doctor's approval, start slowly and work your way up. It is recommended that adult cancer survivors exercise for at least 30 minutes five or more days a week. As you recover and adjust, you might find that more exercise makes you feel even better. Sometimes you won't feel like exercising, and that's OK. Don't feel guilty if lingering treatment side effects, such as fatigue, keep you sidelined. When you feel up to it, take a walk around the block. Do what you can, and remember that rest also is important to your recovery.

  • Accept help.
  • When friends or family offer to help, say yes, and have in mind some things that they could do to make your life easier.    
In this way, you will get the support you need, and your loved ones will feel helpful. "When I first started treatment, I had a lot of help," said one cancer survivor. "So I felt bad asking my friends for more help when my treatment ended. But I still really needed it, so I let them know."

Address any problems that come up when you go back to work or school.

 Your boss or supervisor, teacher, or colleagues may be able to help those around you understand how you want to be treated as a cancer survivor. If problems with others get in the way of your work or studies, you may want to talk with your bosses, your union, the company's Human Resources department, or the school's Student Affairs office.

  • Keep up contacts during your recovery.
Friends and coworkers will worry about you. If they find out about your treatment and progress, they will be less anxious and scared. Talk to them on the phone, send emails, write letters. When you are able, have lunch with friends or stop in for an office party. Your return to work or other activities will be easier for you and others if you stay in touch.

  • Plan what you'll say about your cancer.
There is no right way to deal with others about your illness, but you do need to think about what you'll say when you're back on the job. Some cancer survivors don't want to focus on their cancer or be linked in people's minds with the disease. Others are very open about it, speaking frankly with their boss or other workers to air concerns, correct wrong ideas, and decide how to work together. The best approach is the one that feels right to you.
How has life changed for you as a cancer survivor?
So many times, I hear someone say "my life is so different now," or "cancer changes you." In exploring this idea a bit more, it's not so much about the physical changes that take place, but also the emotional and spiritual changes.
 
 
To see if you have a survivor personality, ask yourself these questions:
  • Do you have a sense of meaning in your life and daily activities?

  • Can you express anger appropriately in defense of yourself?

  • Can you ask for help from friends and family when you need it?

  • Are you able to say "no" when asked to do something you do not  want to do?

  • Do you decide what is right for you rather than follow everyone else's prescriptions?

  • Do you have enough recreation in your life?

  • Are you able to respond to depression without becoming hopelessly depressed?

  • Are you filling a role in your life to the detriment of your own needs?

  • When asked to make a decision, is your answer what you think you want or what feels right for you?

  • What would you place in front of a group of cancer patients to get them to see the beauty of life?

  • How would you introduce yourself to God?

  • If God would grant you to be happy every day for the rest of your life, what would you do?

I hope your answers express your true self and reflect your feelings and needs. Find things that make you lose track of time, learn from your pain and begin to live your authentic life, not a role.

If you haven't done before, you might as yourself the heart of all questions: "What is my life all about, are I'm true to myself, what is it I want to do?"
 
I am a woman who had cancer 17 years ago, but I have become less and less interested in referring to my self as a “cancer survivor” anymore. Today, I am a person who is still standing regardless of what happened to me in the past. I am not limited, or “less than” in any way unless I choose or decide that I am. 

I like the thought of moving from a state of “surviving” to one of “thriving”. It puts me more in the moment and reminds me that I always have a conscious choice in the state of mind I wish to be in. It’s incredibly freeing to realize that I always have the power to choose again. I remind myself to do something to change my perspective when I start feeling stuck, or in fear of what may happen, or when I feel that just surviving is good enough.

And when we do find ourselves in the reality of disease, or pain (either physically, emotionally or mentally, I have found that there is always something (sometimes with the help and support of others) that we can find to focus on that will allow us to transcend those challenges.  And that is what this website and the essence of my work is all about.


 Next page: Chapter 7 -Toolkit for Healing


 

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