Reacting to the diagnosis

 

When you or someone you love is diagnosed with cancer, it’s hard to know what to expect. In the early days after diagnosis, your main focus might be learning about the cancer and working with your healthcare team to come up with a treatment plan. But medical issues are only one part of living with cancer.

It’s important to know that everyone’s cancer experience is different. Some people get through treatment and find that their life hasn’t changed as much as they had expected. For others, their life changes completely. Some people find living with cancer to be the biggest challenge of their life. It changes everything from relationships to work, finances to daily routines. Cancer treatments can affect the way you look and feel and the way that your body works. Cancer also affects your emotions and your plans for the future.

Most people living with cancer need to find ways of coping with the practical issues and other changes that cancer can bring. And everyone does this in their own way.

 

A cancer diagnosis can affect much more than the physical body.

It can also affect emotions and relationships. Your emotions can be very strong, conflicting or disturbing. They may come and go quickly, and they may change often. For many people, life is not the same after a cancer diagnosis.

People respond to a diagnosis in different ways. You may have many questions when you first find out that you have cancer. You may feel shocked, overwhelmed, devastated, numb, afraid or angry, or you may not believe it.

A cancer diagnosis can raise fears. You may worry about death, changes to your body, painful treatments or feeling sick. You may also worry about how your friends and family will react and how to cope with day-to-day tasks, work or finances.

Some people feel alone, even if friends and family are with them. Others feel like they’re watching things happen to someone else. Some people find it hard to understand what the doctor is telling them, and they need to be told the same information many times.

All of these responses are normal. It’s also normal for similar feelings and fears to come up a number of times throughout your cancer journey.

 

Why is this happening?

It’s normal to wonder why you or someone you care for has cancer. No one knows why. Cancer is a complex disease, and it is often impossible to know why things happen the way they do. You may struggle with this throughout your cancer journey.

It might help to remember that knowing “why” will not change the course of the illness. And continuing to wonder may get in the way of your ability to cope. Your valuable energy could be better used to help you and your family deal with the disease. Try to focus on the present and how to best deal with the situation ahead. If you’re having trouble with this, it may help to talk to a counselor or someone on your healthcare team.

 

Will there be pain?

Almost everyone worries that cancer or cancer treatment will be painful. While some people do experience pain, they may have pain only once in a while. Some people don’t have any pain at all. There are many ways to control and prevent pain, so living with cancer does not have to mean living with pain. If you are worried about pain, or if you are in pain, tell someone on your healthcare team. They are there to help you.

Feeling anxious or sad can sometimes make you more sensitive to pain or make pain seem worse. Learning to cope with these emotions may help lessen your pain and improve your mood. Finding ways to manage pain may make it easier to cope with your emotions.

 

Will I die?

When first diagnosed, many people with cancer and their families think about the possibility of dying of cancer. This is a normal reaction. These kinds of thoughts can be overwhelming, especially at first. Over time, as the reality of day-to-day life with the disease settles in, many people begin to think instead about living with cancer. This change of focus can help you find the strength and resources to cope with the challenges of the disease.

 

Will I have to wait for treatment?

Once you’ve been diagnosed, it’s normal to feel that treatment should start right away. You may worry that extra tests and appointments will take too much time. You may feel like you need to make a decision about treatment right away.

Waiting for treatment to start isn’t easy. Your healthcare team can usually give some idea of how long the tests will take. In most cases, there is time to gather information, talk with your healthcare team and make decisions about which treatment is best for you.

 

How can I cope?

Each person copes with cancer differently. Time and practice can help you adjust to your new normal.

These tips may help you cope:

  • Learn about the type of testicular cancer you have and how it is treated. Getting involved can help give you a sense of control over what’s happening.
  • Express your feelings. Talk to a trusted friend or family member, keep a journal or blog or express yourself through music, painting or drawing.
  • Take care of yourself. Take time to do something you enjoy every day. This might be as simple as spending time with a special friend, preparing your favorite meal or listening to your favorite music.
  • Exercise if you feel up to it and your doctor agrees that it’s okay.
  • Reach out to others. Friends, family or a support group can help you feel that you’re not alone on your cancer journey.

Try to keep a positive attitude. Staying hopeful can improve the quality of your life through your cancer journey. Being positive can be different for different people. It does not mean you have to be happy and cheerful all the time. It is positive to just be aware and accept your feelings, even if you are worried, depressed or angry.

You can be sure that the level of emotional intensity you are experiencing will decrease over the next few weeks as you get your bearings. It takes time to adjust to this type of news.
 

Practical Issues

Cancer does not only impact your body or your emotions. It also impacts daily life and can raise more down-to-earth issues with regards to your own personal situation.

I have to leave work to get my therapy. What are my rights with regards to my employer? What recourses do I have if I feel that my rights have been violated?

 

Your rights as an employee vary depending on your employment status (e.g., self-employed, union member or not, permanent or temporary job) and the conditions of your employment. Depending on your specific situation, your union, HR consultant or local employment center will be able to explain to what you are admissible during your therapy. Check with your doctor to see if he feels that your medical condition hinders your ability to work normally. If so, he can provide an official document confirming your temporary inability to work. This will be very useful to you for subsequent administrative negotiations with your employer. We suggest that you talk about your level of energy and your wellbeing with your medical team before, during and after your treatments.

You feel that your rights have been violated because of your disease? Consult your union, or the CSST that is responsible for workers’ rights and safety in Québec. A social worker can also answer your questions about this issue.

I am a full time or part time student – should I abandon my classes or fail them? What else can I do?  

 

Absolutely not! The majority of educational institutions show exemplary understanding in this type of situation and propose several measures to help a student who are ill return to classes or obtain a deferred date for handing in assignments. It is very important to not make hasty decisions because of how you feel, but you should contact key people in your institution early on (registrar, program directors, even concerned professor(s)) to find out what measures are available to you so that you can complete your educational projects.

And why not talk about this with your physician? Depending on your level of energy, side effects of the treatment, and your overall reaction to the disease, he or she will know just how active you should be. He or she could also give you a medical certificate confirming your health problems and provide recommendations

Some patients prefer to maintain some of their activities while others will have no choice but to stop because of the treatment itself (traveling to and from, etc.) or its side effects. Be attentive to your needs and to the signs that may tell you that you are doing too much. If you miss your classes because of the contact you had with classmates, do not hesitate to create alternative scenarios to remedy those feelings of isolation (e.g. a meal with friends). Why not go to your school during breaks just to chat with those people you miss seeing. Although your frame of reference has changed a lot, life does not stop! You simply have to adapt to your current level of energy and to the situation forced upon you by this disease.

I am a father, do I have to explain my disease to my children? If so, how? Am I eligible for respite services so that I can concentrate on healing?

 

We strongly recommend that you do explain to your children that you are dealing with an illness, using simple words that are adapted to their level of development. For example, you can use stuffed animals and metaphors or role playing when speaking to the younger children. Several research projects have shown that indeed simple clear explanations allow children to manage the situation more effectively and experience with less daily anxiety and feelings of insecurity.

Some parents think they are protecting their children by keeping them in the dark and are afraid of alarming them. Keep in mind that your children realize that something serious is happening in your life. Children are sensitive to what goes on in their environment.  Not telling them may cause them to expect the worse as they are very good at imagining catastrophic scenarios that are often more dramatic and anxiety causing reality. You should therefore focus your explanations on reassuring facts and messages such as the fact that doctors are looking after you and trying to control the little ‘beasties’ living in you. It is also important to convey to children that they have nothing to do with your disease. Let them ask you questions and adapt the information to those questions. Don’t say too much, the objective here is to be reassuring.

Psychologists and social workers can prepare you for this discussion and help you along if you feel you need them. In Québec, some CLSC’s offer support to the parents of young children when a family member is diagnosed with cancer (e.g. respite daycare). You can get the information directly from your neighborhood CLSC.

The Resources Section provides ideas for films, fairy tales or other types of works that you may find helpful.

The therapies and care I need to treat my cancer are not available in my area. My physician referred me to a hospital outside my region. Am I eligible for financial aid for transportation and accommodations?

 

Canadian citizens who have to travel more than 200 km from their home to obtain medical treatments that are not available in their area can be eligible for reimbursement of their travel and accommodation expenses based on certain criteria that are specific to each area. In some cases, the costs incurred by their caregiver can also be taken into account. The caregiver who accompanies the patient must be clearly prescribed by the physician. It is important to keep all receipts (gas, hotel room, meals, etc.) and other corroborating documents. Each region has its own reimbursement procedures, but generally it is simply a matter of contacting the regional hospital.  Should you encounter any problems with this process, a social worker can help you make sure that your rights are recognized.

Right now, I am making less money or am having financial difficulties because of my disease. Where can I go for help?

 

They say that disease makes your poorer. Young people who have to quit a job that allowed them to pursue their studies and look after their basic needs such as food, clothing and transportation are often faced with this issue. Others will no longer be able to afford their lodgings, will have to go back to the parents’ home, ask them for financial support or seek out welfare. These problems are in addition to their concerns associated with the disease and require a lot of energy.

There are certain resources that are there to help you. Ask your health care providers to meet a social worker who will examine your situation and recommend resources that can help you. You can also enquire at your local CLSC.

Are you between 16 and 30 years of age? The Fonds Jason specifically helps people in your age group. To have access to it, contact the Fondation Virage that will evaluated your needs and submit your request for help. There are other resources available for those who are not in this specific age group.

Do not keep these concerns to yourself, talk about them with your medical team, you will feel less isolated and find that there are solutions.

I just recently left home to live on my own, but my cancer diagnosis has made me re-examine this decision. Is it safe for me to continue living alone during my treatments? Should I think of going back to my parents’ temporarily? Are there services that can help me remain independent and make sure that I can stay where I am now during this period?

 

No two situations are the same, but it is good to know that the great majority of young men can continue to live on their own safely during their treatments. If you are worried about this, why not talk about it with your physician or your nurse care navigator both of whom could make recommendations that are appropriate for your particular situation. However, the support of your loved ones is essential during this difficult time. Consequently a lot of patients choose to get closer to their family in order to get help. Try to assess your feelings of independence which are important in any young man’s life; will it be hindered if you take advantage of the help your family can provide? Good communication with them about your needs, your expectations and about what is ‘too much’ or invasive will ensure that you adapt well to each other. Several people are much stronger than one single person.

It is important to note that in Québec, the CLSC, and other resources in Canada, provide help at home (after surgery for example). These services vary a great deal from one region to another, and you can obtain information directly from these centres or ask your nurse care navigator or a social worker about this.

 

Source : Text written by a psychologist and a social worker from the supraregional multidisciplinary uro-oncology team at the CHUM, 2014.

 

Talk about it

Given that you have to manage your own feelings and the impact of the disease on a daily basis, it is not your role to manage other people’s emotions. Remember that it is the situation (the cancer) and not you, that is responsible for their sadness. Too many patients feel guilty about the distress of those they care for.

 

Break the silence

Clearly, cancer is affecting those who care about you; although their experience is different from yours, they often feel powerless. Sometimes the people who are close to you won’t dare bring up your condition, fearing that you will be overwhelmed, and thinking they are protecting you. They are stuck with wanting to help you, not really knowing what to do, i.e., they are powerless.

This silence protects no one, on the one hand it deprives you from available support and on the other hand it deprives them from feeling useful and reassured. Breaking that silence is therefore a means of protecting everyone’s well-being in the long term. Others will understand your various reactions, your impatience or frustrations as long as you explain them more clearly. Do not be afraid to be a burden. If you communicate clearly with those around you, trust that they will be able to share their own limitations and needs. For more information about intimate relationships, refer to the section Sexuality & Fertility.

Some people may find it more difficult to deal with your cancer. You should know that most of the emotional support services available to patients are also available to caregivers. Do not hesitate to share your concerns about someone’s reactions with your physician, your nurse care navigator or the one supervising your chemotherapy, they will know where to refer that person so that he or she can get help.

 

Talk about it in your own good time

Depending on your personality and your current situation, you may or may not feel like sharing the news immediately with others. Some people prefer to keep to themselves and only speak about it to those people who are closest to them. It is absolutely acceptable to take the time to absorb the diagnosis and what it involves before revealing it to other people. Try to respect your own timing, your needs and your desires in terms of sharing sensitive information. Some find it emotionally draining to have to continuously repeat facts that are difficult to face. We recommend that, at a minimum, you take advantage of the social support afforded you, by surrounding yourself by at least one person who is important to you. The benefit is that you will not be alone in dealing with your reactions, and a demanding future that will require you to make many decisions by yourself. Ask for help if you feel you are losing control.

 

Think about a ‘spokesperson’

Do not hesitate to delegate the news of your diagnosis to someone trustworthy who is close to you (a spokesperson). If you feel it necessary, this person can continue to inform other people about the state of your health which will protect you from emotional reactions and numerous questions from the people around you. Having a ‘spokesperson’ is an appropriate way to set clear boundaries vis-à-vis reactions that are overwhelming, while keeping others informed. You can also use the social networks (internet) to keep a lot of people informed (in one click) while giving you the time to choose your words which is often difficult face-to-face. This is another way that you can protect yourself from other people’s emotional reactions at a time when you are personally trying to adapt.… In short we suggest that you pick and choose the people with whom you want to discuss this. It is not necessary to divulge your medical condition to everyone (e.g. via social media). Try to do what is appropriate for you. Trust yourself, you know yourself well enough to decide.

 

Self Esteem and Body Image

Finding out you or someone you love has cancer brings many changes. Whether you’re newly diagnosed, in active treatment, or are caring for someone with cancer, you will probably need to deal with many practical issues, make tough decisions and cope with a range of emotions.

There are many ways that you can cope. No one can predict exactly how cancer will affect day-to-day life. While you can’t control the future, you can think about what changes may happen and how you would deal with them if they arise.

Reference

Cancer can change the way you look, temporarily or permanently. Some people gain or lose weight. Chemotherapy can sometimes make your hair fall out. You may have had surgery to remove a part of your body, and you may have scars.

These changes, even if only you can see them, can affect self-esteem – or how you feel about yourself. For many people, self-esteem is very closely tied with body image, which is how you feel about your body. At times, you may feel unattractive and negative about your body. Even though the effects of treatment may not show on the outside, body changes can still be troubling because the “old body” is lost. These feelings can be difficult to cope with.

You may be afraid to go out and be with other people. You may worry about rejection or not want to be intimate with your partner. You may be feeling angry, upset or sad.

 

What might help

For some changes, like hair loss from chemotherapy, it can help to remember that they are only temporary. You’ll probably begin to look and feel more like your old self when treatment is over.

Changes in the way you look can be difficult for you and your loved ones. It takes time to grieve the loss of your “old body” and work through feelings about the changes. It may help to talk about how you’re feeling with your partner or a trusted friend. A support group with people who have had similar cancer experiences can give you a place to speak with others who are coping with the same fears and concerns you have. Your healthcare team can suggest professional counsellors who have experience in helping people cope with body changes and improve self-esteem.

Staying active, visiting with friends and doing activities you enjoy can help you feel better about your body image.

You may want to try a different haircut, hair colour, makeup or clothing

Remember that you are more than your body or the changes to your body that have happened because of cancer. You have worth no matter how you look or what happens to you.

 

Emotional and Psychological Support

All stages of cancer treatment (investigation, diagnosis, therapeutic marathons, etc.) carry with them their own challenges that impact your ability to adapt. Indeed, cancer is a new reality that has been thrust upon you and one that carries its lot of changes and decisions that affect different facets of your life. Consequently, it is normal and expected that you will feel, one day or an another, affected and unhinged by what has happened to you. You may have to deal with numerous questions, reactions and feelings which may surprise you, embarrass you and even raise questions in your own mind about your personal resources and strengths. You may, at times, have the impression that you do not recognize yourself. Rather than judge yourself negatively when such reactions arise, keep in mind that treating cancer also requires that you look after your psychological wellbeing!

 

Learning to listen to YOU

There are different measures that you can take to help you adapt more easily and to feel better. For example, try to be aware of your level of energy and your emotions so that you can adopt a rhythm that is yours and that is adapted to your current situation. Think about the means you took to face other difficult situations in the past. You know better than anyone else what is good for you. As long as they are not harmful to your health or to your treatment, use these same means as often as possible. For example, if sports have always allowed you to vent your frustrations, stay active! However while some people may use alcohol and drugs to relax or forget their problems, these will only have a temporary effect in addition to being harmful to your health.

We also suggest that you surround yourself with people who are good for you, whether they be friends or family members, and that you maintain an open communication channel with them in terms of your feelings, your needs and your expectations.  You will hear repeatedly that this is the time to lean on the people around you, but they also need to know what your needs, expectations and limits are.  Use the support of those around you to delegate tasks that take too much out of you. You may notice that while people may pay a lot of attention to you at the beginning, this may decrease over time as people are dealing with their own realities – this is perfectly normal. Do not hesitate to express your needs and expectations as they change over time. Social support can really protect you psychologically.

Don’t hesitate to remind friends and family members that you are still interested in other things, not just your cancer! In this regard, concentrating on the aspects of your life that you have more control over, can be beneficial.

If you feel stressed or anxious, you can also turn to relaxation methods. Deep breathing exercises, meditation (secular or mindfulness) and yoga have been proven to reduce anxiety. Some people decide, for example, to try activities such as yoga. Ask around you for information about these types of services that are available. Depending on the level of energy you have to maintain, physical exercises can also have a positive impact on your nervous system. Continue to be minimally active.

 

Professional help

Basically, it is up to you to decide whether or not to consult a psychologist. Some young adults who have cancer feel different and misunderstood by their friends or others of their age group, even if they try to share their experience with them. Seeking out the help of a psychologist specialized in oncology or participating in a support group with other patients can help you get through the various stages of the disease. This will help you deal with this unpleasant situation and develop means to help you move forward with your life and your therapy.

The main role of oncology psychologists is to assess psychological distress or the psychological repercussions of cancer on you personally and on your entourage at each stage of the disease. Their intervention is mainly aimed at relieving suffering and at encouraging you to adapt. They seek to help you develop means (adaptive strategies) to face each stage of your cancer, to regain your quality of life based on the person you are. Psychologists can also help you understand changes in your relationships and in your discussions with the people closest to you.

Do not hesitate to talk about your concerns with your healthcare team, they can target your needs and direct you to the professional resources that are appropriate for you. Should you consult a psychologist, a social worker or a sexologist? Expressing your needs will help them determine what is best for you.

Your team may recognize some telltale signs that will lead them to encourage you to seek professional help; these are signs of significant psychological distress that should be taken into account. These signs include insomnia, loss of appetite, stomach aches or nausea that cannot be explained medically, loss of interest, problems with concentration, irritability, isolation etc.  In terms of what you are thinking, if you tend to feel guilty about the cancer or if you think that ‘the worse will happen’, they may suggest that you seek psychological support to help you deal more easily with the cancer situation. This will also be true if you are thinking negative thoughts, have a history of depression or if you feel terribly discouraged at any time during your therapy. Often recurring feelings of anxiety, sadness, discouragement that last over time or that are very intense or that can even hinder your overall functioning, have to be addressed by a professional. The objective is never to judge you, but to provide you with the appropriate support so that you can regain a quality of life regardless of the cancer. Dare to try the measures suggested to you and then you will be able to judge if they are appropriate for you! Do not isolate yourself with your distress, your medical team is concerned about you as an individual.

You may, at times, have the impression that you do not recognize yourself. Rather than judge yourself negatively when such reactions arise, keep in mind that treating cancer also requires that you look after your psychological well-being!
 

Stress and Cancer

Cancer can be a very stressful life event. Waiting for a diagnosis, hearing that you have cancer, coping with treatment and side effects, being anxious about work and finances, and worrying about what the future holds can add up to a large amount of stress in your life.

Learning to manage stress can help you feel less tired and anxious, improve your quality of life and help you cope.

Stress is a normal reaction when we feel overwhelmed by the demands from the world around us. Stress is more than just a physical or emotional reaction. It can affect our body, our feelings and how we act.

 

Physical symptoms of stress

  • headaches, tense muscles or muscle pain
  • chest pain
  • fatigue or sleep problems
  • loss of interest in sex
  • heartburn, upset stomach
  • high blood pressure
 

Behaviours that may be related to stress

  • alcohol or drug abuse
  • smoking
  • withdrawal
  • eating too much or too little
  • “picking fights” or being argumentative
  • uncontrolled crying

Emotional symptoms of stress

  • irritability
  • anger
  • anxiety
  • restlessness
  • sadness, depression
  • problems concentrating
  • lack of interest, low motivation
 

If you’re having trouble coping, don’t be afraid to ask for help. Support from your family and friends can give you comfort, and they may have ideas on how to manage. If you don’t feel comfortable talking to a family member or friend, a counselor or person with a similar experience can also help.

 

Content Courtesy of Canadian Cancer Society.

 

Sleep

Sleeping is essential when facing various therapies that cause fatigue. Like eating well and being physically active, the quality and the number of hours you sleep are key to your recovery.

The following suggestions will help you maintain good sleep quality :

  • Avoid caffeine 4 to 6 hours before bedtime;
  • Avoid smoking before bedtime and when you wake up during the night;
  • Avoid drinking alcohol before bedtime;
  • Avoid big meals and sugar before bedtime;
  • Exercise regularly, but at the appropriate time;
  • Make your bedroom comfortable (temperature, noise, light);
  • Limit your intake of sleep medications.
     

Cancer patients often find it difficult to sleep. The following may help :

  1. Set aside at least one hour to relax before bedtime; this will induce drowsiness. Certain activities can prepare you for bedtime (e.g. watching television, listening to music).
  2. Go to bed only when you feel drowsy.
  3. If you are unable to fall or go back to sleep within 20 to 30 minutes, get up and move to another room:
    • Do something that will help you feel drowsy,
    • Do not go back to bed too quickly,
    • Repeat each step as often as needed,
  4. Do something that will help you feel drowsy:
    • Use an alarm clock,
    • Even during the weekend, regardless of the amount of sleep you have had.
  5. Reserve your bedroom for sleeping and for sexual activities:
    • Avoid eating, watching television, working, surfing the internet or reading in your bedroom.
  6. Avoid taking naps:
    • Practice stimulating activities when you feel like having a nap (e.g. go out for a walk).

If you are running out of energy and feel that you really need a nap, we recommend that you do so before 3pm, nap in your bed and limit yourself to one hour. The above suggestions should also be respected (e.g. getting out of bed if you do not fall asleep within 20 to 30 minutes).

Source : Text written by a oncology kinesiologist at the CHUM, 2014.