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Narrator

We've talked about how lymphoma is diagnosed and treated, and we have also covered most of the symptoms and side effects.  We now need to discuss some of the other changes that you may have to deal with because of your disease.

Having lymphoma requires making some difficult life changes.  Some of these changes are temporary, others are ongoing.  Let's listen to a conversation of a for-men-only session of the support group as they respond to the social worker who has just asked them about life changes they have had to make since their diagnosis:

Carlotta (Social Worker)

Sometimes cancer causes other problems in our lives, and many of these changes are hard to accept.  Can anyone give an example of a life change brought about by their disease?

Carlos

It's funny you should ask that question today.  I had a disappointment just last weekend.  It was the opening of trout season, and my nine-year old grandson and I have been planning for months to go to a cabin on the lake to fish.  I never had a son – just daughters – and I've looked forward to these kinds of activities for a long time.  Well, my last chemo was done almost a month ago.  I was sure I'd be back to my usual activity level by fishing season.  But as the time to pack for the trip got closer, I realized that I didn't have my strength or energy back yet.  I started to worry about being responsible for an energetic little boy and how long I'd be able to fish, and whether or not he would even be safe with me.  I finally asked my brother Joe to go with us and he agreed.  He and my grandson had a great time together, but I felt like a third wheel.  At least I didn't have to cancel the trip and disappoint my grandson.  But I wonder if I'll ever be able to do all the things with him that I had planned. 

Sam

What I hate is not being able to do some of the daily things.  Like help carry in the groceries for my wife.  She says she can manage fine.  But it makes me feel embarrassed and useless when I can't help with even small things around the house.

Paul

I had the same problem with cutting the grass.  We have a big yard, and I really love keeping the lawn looking nice.  But, when I am on treatment, it's pretty hard for me.  We finally settled on buying a riding lawnmower and that's been ok so far.  I have to admit that using the push mower had gotten pretty hard for me, but I hate not being able to do something that is so routine.

Jose

I can really relate to that.  We have a woodstove, and every fall we get a load of wood and I spilt it and stack it.  I've done this for 20 years, and it's something I love.  Well, last fall I was feeling pretty good and I was sure I could pace myself to get the job done by working on it some every day.  But on the second day, I had some trouble with my balance when I was stacking the wood.  I also had some tingling in my thigh muscles from some nerve damage and peripheral neuropathy that's probably caused by the vincristine.  Now we have the wood brought already split and the man who brings it stacks it for us.  I feel a little cheated by not being able to do it myself, but it's also good to save my energy for things that are really fun and healthy for me to do. 

Carlos

This story is a little different, and it's hard for me to talk about.  Always before I've been the strong one in our family.  I was raised to control my emotions, and crying wasn't something a man did.  In fact, I never saw my father cry.  Since I've had this disease, I find myself feeling emotional all the time.  I'm ashamed to admit it, but when the doctor told me last week that I might need chemo again, it was all I could do not to start crying in his office.  I broke down in the car – in front of my wife Tanesha.  She was the strong one that day.  It seems like our roles have reversed, and I feel like I'm letting her down.

Jerome

That's how I've felt since I had to take early retirement.  You know I was a truck driver – drove a big rig.  Well, it got so that I simply couldn't do it physically after my diagnosis.  So I retired five years earlier than I planned.  That leaves my wife as the family breadwinner.  She's been great about it, but I feel like I'm not holding up my end of the bargain.  And it's caused some financial issues for us, too.

Carlotta (Social Worker)

Well, it sounds like all of you have had situations where your lives have had to change due to lymphoma.  I think I heard two major themes.  One was what we call "role change" or "role reversal." The other might be termed "living with uncertainty" – not being able to know enough about the future to be able to plan for it the way you would like.

In families, and in the workplace, each of us assumes certain roles and some change more frequently than others.  Some of these roles are fixed – like the role of father or husband.  Other roles can change – like when you get a promotion, or when you change jobs.  Sometimes we can plan for these role changes and are happy when they occur – like when Carlos became a grandfather or when someone plans for retirement.  Other times, like with Jerome having to take early retirement, the change seems out of our control – it is forced on us in some way.  We almost always resist forced change.  It makes us angry.  It doesn't seem fair.  Yet, when we look back on it later, the change might actually have had a positive side.

For example, maybe in Carlos' situation, his brother got to know his great nephew better, and enjoyed spending some unexpected time with Carlos.  Also, maybe Carlos' wife was relieved that he could finally express his emotions.  Maybe it also freed her up a bit from trying to always appear strong for him and the family.

And Jerome, maybe your wife likes the fact that you're home more and that you are able to help her around the house or just keep her company in the evenings. 

Narrator

Not all change is bad.  Much of it can be useful, even positive.  What's hard is getting used to the change.  Most of our roles are comfortable.  We know what is expected of us and we know how to perform in our usual roles.  So role change brings with it uncertainty.  And role reversal – when someone else takes our role, and maybe we take theirs – can feel like it doesn't fit.  We don't like it and just want things to be the same as they were.

But a cancer diagnosis and treatment can bring about permanent changes, like Jerome's stopping working.  The goal after a cancer diagnosis is to get back to normal, but most often a "new normal" must evolve so you and your loved ones can move forward.  

We always have to live with some uncertainty.  We can't be certain about the economy, or about our jobs, or even about the weather.  But cancer brings with it a heightened sense of uncertainty, and it may take years for you as a cancer survivor or your family to feel safe again, to be able to plan for the future with confidence.

Living with such uncertainty can have a negative impact on family communication and on family functioning.  If you feel you or your family are having trouble talking about your problems, you might find it helpful to listen to the program about "Communicating" on the basic Cancer Survival Toolbox® and the program called "First Steps."  It also might be useful to seek assistance from your health care team or from a social worker or other mental health professional.  Similarly, if you are feeling depressed or anxious due to the changes you must make in your life because of cancer, seek some help.  Try a support group or a specific cancer-related community activity or program.  Or look for  individual or family counseling.  A few meetings with someone skilled in counseling people with cancer will help you link your cancer experience to the problem-solving skills you have always used.  They will help you remember how you successfully dealt with change and challenges during other times in your life.  And they will help you use the skills and strengths you already have to move beyond the current situation.

If your cancer is causing financial problems, seek some help there, too.  A meeting with a financial advisor can go a long way.  There is also a program in the Toolbox on "Finding Ways to Pay for Care."

You can't alter the fact that you have been diagnosed with lymphoma, but you can learn to adapt to it and to manage the necessary life changes required to live as fully as possible after your diagnosis.

Narrator

As we learned from the men's support group, many factors play an important part in the decisions and adjustments you need to make after a cancer diagnosis.  For example, these include your age, whether you're employed or retired, whether you're planning a family or have grandchildren, or whether you are living alone or are caring for children or other relatives.  They also include health issues and financial concerns.  Many of these needed changes can be difficult to accept.  You may hate to depend on others and aren't used to talking about private issues.  You don't want people feeling sorry for you or talking about you.  In addition, your treatments may make you anxious or depressed or emotional.  These all stress the importance of finding support and talking with the people in your life you are closest to or going back to  people who have helped you with problems in the past. The following exchange between a long-term survivor and one recently diagnosed is an example of this type of help.

Marta (Newly diagnosed)

One of the biggest questions we have is about telling our niños — our children — who are only 8 and 10 years old.  In our culture we believe children should not have to know about illnesses like cancer because they might be afraid, so we have only told our children that their mommy has some little lymphs in her that means she has to go to the doctor.  I have been afraid to tell them because I cry so much and I don't want them to be scared.

Maria

I was afraid too, especially because my little boy has some problems and stress is not good for him, but I talked to my social worker, who knows me and my children very well.  She suggested we say the word "lymphoma" and explain that I have to have some special medicine called chemo that makes me feel tired, but that the doctor says can help me.  My son accepted it and he is very sweet to me.  I told him his hugs and kisses make me feel relaxed and help me get my rest so he gives me lots of them.  I think you have to find the right words for your children to let them know why you may feel tired or sick but also let them know you still love them.

Narrator

It's also good to remember that although lymphoma is not as common as some other types of cancer, you are not alone.  There are thousands of others, who like you, are figuring out how to live and cope with lymphoma and its symptoms, side effects and uncertainties.

There are also many different types of help and support that your doctor or nurse or social worker can suggest.  We've already learned that support groups are one way to find others who can help you understand the many ways lymphoma affects your life, but support groups aren't for everyone.  Some people don't like being in, or talking in, groups and need something different.  Let's listen to how Charlene found the help she needed.

Charlene

I'm a pretty private person.  I've always lived alone and have been able to take care of myself and my home just fine.  I don't talk about my personal life or feelings with people I don't know.  And I certainly don't want to talk to people who don't understand this thing called non-Hodgkin lymphoma.  My best friend is a talker and she keeps telling me I should go to a support group, but that's just not for me.  I do talk to her, but while she tries hard, even she can't really understand what I'm going through with all these meds, the foggy thinking, the fear that I have about how I might not be able to stay in my home and take care of myself because of this illness.  The nurse at the clinic suggested I keep a daily journal – put my feelings down on paper just to get them out.  I've tried that, but it doesn't seem to help very much.

Then Carlotta, the social worker at the treatment center, told me about a program that would match me with another person with a similar diagnosis.  They found a woman named Carrie who is almost my age, single, and she's been battling this disease for over three years.  The first time Carrie called me on the phone, we knew we had a lot in common.

Talking to Carrie gave me a lot of hope.  When I first heard my diagnosis, I admit I thought it was a death sentence.  So it gave me hope to hear that Carrie was doing so well three years later.  I can talk to Carrie about anything.  She's become a good friend to me.

The other person who has helped me is the priest at my parish.  I have always had faith and I find comfort in prayer.  But I didn't quite know how to explain my situation to Father Chris.  One day after church, he said he had heard that I haven't been feeling too well lately, and he asked if he could come and visit me at home, and I quickly agreed.  Once I talked to Father Chris, I was surprised that he knew so much about cancer.  He said that he is a part of a national group of faith leaders who are trained to understand the problems and struggles that people with cancer face.  He understood the language and the terms.  But most of all, he understood my fears.  He also asked if I would allow him to suggest ways other parish members could help.  I agreed, so now I feel like I have a bigger family, but they aren't intrusive.  They only help when I want help.

Carlotta (Social Worker)

With all of the different treatment choices and resources available, it's important for you to tell your health care team what kinds of services and supports you find most helpful.  Clinics and doctors' offices can seem really busy, but if you ask, someone will sit down with you and go over your treatment plan and support resources.  It saves time in the long run if they can get to know you and to know the best way to help you make decisions and better cope with your illness.  We work as a team in the clinic or office, so if you just let one of us know what you need we can find a way to work together.  The better you know yourself and what helps you to cope, the better the people caring for you are able to support you.  But you must be a self-advocate.  You need to be direct in asking for what you need and you need to stand up for your rights to good care and support.

Charlene

It's taken me awhile to figure out that I don't always have to do everything for myself, even though I have taken that route in the past.  I still go to work every day and that is important to me – along with taking care of my home – and I don't plan to give that up any time soon.  It took me ending up in the hospital to realize that when I have a problem, I have to call the clinic before things get too serious.  My church family has been like a rock.  I know that all I have to do is ask – actually I don't even have to ask, I just have to say ok, and they'll be there.  Lymphoma is a very serious illness, but it doesn't have to be the end of my life, just a turn in path with some outstretched helping hands that I can grab onto along the way. 

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