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Relationships and Families

Relationships and Recovery for Young Adult Lymphoma Survivors

By Les Gallo-Silver, ACSW, LCSW-R

Recovery & Fatigue

Recovery, restoration, and re-entry are all part of putting the pieces of your life together once you are diagnosed with a lymphoma; and begin; and go through treatment. Often people concentrate on the way they look but of course that is also connected to the way they feel. You may have read many things about fatigue. It is a very complex feeling. One thing seems to be consistent is that activity helps people feel less fatigued. This may not make sense at first because fatigue is often confused with tiredness. Your fatigue may have been caused by the loss of weight, and also the loss of muscle as you went through treatment. You may feel and look different even though treatment has ended. Gradually, increasing your activity will help you sleep better and improve your appetite. Resting after activity is always helpful but try not to nap so you can reserve sleeping for nighttime.

Try to eat small meals frequently and if possible concentrate on eating foods that are rich in protein and are high in healthier types of calories. Your doctor or nurse can help you identify which foods this might be for you. Walking is a good exercise for most people. Your doctor or nurse can advise you as to what would be a beneficial exercise for you. Weights can be helpful for muscle development and regaining muscle tone. Instead of concentrating on lifting heavy weights; choose lighter weights; but work on increasing the number of repetitions of lifting. In addition remember to drink fluids, water is great but it does not have any calories, so consider adding natural (with no added sugars) or freshly squeezed juices to your diet as well. Eating healthy and exercising will help you manage feelings of fatigue more effectively. A steady and gradual increase of healthy calories will help you gain weight and the exercise will help you build muscle. Healthy eating and taking in enough fluids will improve your skin color and the texture and sheen of your hair.

Recovery & Self Image

The process of building yourself-up also relates to the image you want people to see. Women and men have concerns about their appearance in general without Lymphoma ever entering the picture. Regardless of your weight, it is important that you wear clothes that fit you correctly. Dress in fabrics that are kind to your skin, which after all, like the rest of you has been through a lot. Those would be natural fabrics such as cotton. Dress in colors that help you look your best. Wearing clothes that try to hide or camouflage you are also the types of clothes that will make you seem ill or weak. A good rule of thumb is to try to use a color that either matches or compliments the color of your eyes or the color tones of your skin. If you are unsure of how to do this, ask a friend or family member to help you. Keep in mind that white and grey tend to "drain" color from a person and would not be helpful to making an impression of health and vigor.

Make it a point to say something kind to yourself each day about the way you look. Some people have found looking in the mirror and commenting favorably on some aspect of their appearance helpful and uplifting. This is called a "coping statement" because you are countering negative thinking by trying to replace it with a more productive and encouraging thought.  Perpetuating negative thoughts about your appearance will show in your face through a "closed" facial expression, diminish the amount of eye contact you have with people, decrease the firmness of your hand shake and promotes poor posture. If you are having trouble changing the way you are thinking about your appearance perhaps you can change the behaviors it can cause. For instance: hold you head high and be sure to raise your eye lids, maintain eye contact when you are speaking to people, give people a hearty hand shake, and stand up straight.  You may find that by doing this, you feel somewhat better about how you look. Sometimes by changing behaviors you can have an effect on your thoughts. Learning and practicing relaxation techniques, such as meditation and guided imagery, can help you clear your mind of negative thoughts about your appearance. In addition these techniques can help relieve tension that you may hold in your muscles and joints.

Some people have had to take steroids as part of their treatment regime. This may have resulted in weight gain due to the way this medication affects the appetite. Healthy eating and exercise recommended by your doctor or nurse can help you manage your weight gain effectively. Wearing clothes that fit correctly can help you feel more comfortable and confident about your appearance. Wearing black or grey as a way of making yourself "look" smaller will only tell people you are uncomfortable with how you look. Consider colors that you enjoy wearing and that compliment your skin tone. Once you no longer need to use steroids you can work with your doctor or nurse on healthy ways to lose weight.

Most people pay very little attention to how they dress before they go to bed. Having been treated for lymphoma you probably have worn an array of pajamas and hospital garb. Now is a good time to pay extra attention to wearing something that is new, feels good, and looks good on you when you go to bed.  It makes a difference when you wake-up the next morning and you look in the mirror and you are wearing a new pair of pajamas, nightshirt or gown. Pay attention to your bed. Make sure you sleep on clean sheets and pillow cases. Make your bed each day. If you associate your bed sheets with your days of being treated it is time to invest in new ones. Create an inviting, calm, and comforting place for you to sleep.

Recovery & Your Partner

Recovery is a process that involves your partner as well. Lymphoma may have changed your relationship. The romantic parts of the relationship may have been supplanted with more care taking types of roles. It will take time for your partner to realize that you don’t need quite so much help any more doing the basic things. You may want to return to having more privacy in the bathroom than you did when you were being treated. For some time, your body has associated being touched with being treated for cancer. Gradually, you may want to help your body associate being touched with being loved and comforted. As you regain your physical strength, your body will become naturally more reactive to being touched but you may still need some help in re-learning how to relax and enjoy these feelings. A good place to help your self explore how touch can feel good again is while bathing. There are various massage techniques that concentrate on the hands, head and feet that will reawaken the rest of your body. Wanting to become more physically intimate with your partner again usually does not happen without the two of you sharing your thoughts and feelings. How does one begin a conversation like this? The simple answer is with: "I love you . . ." and then go from there; because if you start the conversation in that way it is clear what is important about being intimate between you and your partner.  Talk about how the two of you first met. What were the things that brought you together as a couple?  What are the silly things that happened to the two of you along the way? The mechanics of becoming physically intimate again can be worked out gradually as you go along once the two of you share the reason why you are together in the first place. The important thing at first is to be able to hold each other and kiss and feel safe in each other's arms. Not as patient and nurse, or parent and child, but as the romantic partners that you are. Vaginal lubricants and erectile dysfunction medications are easy enough to obtain and use if and when needed. Sharing, comfort, affection, and communication are not on any drug store shelf. It is within the two of you. Open up the photo album and reconnect to the life you built together. Begin to touch each other and slowly start from the beginning again.


Recovery & Leisure Activities

Managing fatigue and becoming more energetic, perhaps gaining some weight and muscle, and dressing yourself so the world sees you as the healthy person you are and want to be also impacts on your friendships and the leisure activities you may have shared with them.  For some people returning to a "normal routine" may include anything from bicycle riding, swimming, skiing; and any number of team sports with and without contact. Your doctor can advise you which leisure activities you can go back to and when it is time to do so, but it will be your job to let your friends know that it is okay. Your friends will need reassurance that you are fine and will want to know if there is anything they have to change or alter when enjoying sports or other physical activities with you. It may seem awkward to talk about this with your friends but it will not take away any of their enjoyment in having you back. It is important that you let yourself enjoy "being back" as well.

At times it might seem to you that you feel more "serious" or more "mature" than your friends and other people your age even though you may have needed to take time off from work or school due to your treatment. You may think that the concerns of your friends, potential friends, and even potential new partners are "trivial" compared to having been treated for Lymphoma and being concerned about your health and future. The feeling you may be experiencing is sometimes called "social asynchrony" meaning you feel "out of step" with people in your own age group. It will take time for your Lymphoma experience to become balanced by other life experiences you will have in the future. Be patient with others around you. Instead of only concentrating on what they are saying; also concentrate on how they are saying it. All human feelings are similar and valuable no matter the cause.  In addition, perhaps it may be a good time for you to seek new relationships in different social settings. Perhaps in clubs or organizations where people gather due to a common interest in an idea and goal rather than in more informal settings such as at a party or bar.


Recovery & Being Single

Sometimes when meeting new people you might not be sure how much of your "story" to share with them. If you are single and are hoping to meet a partner, this can be a very important issue for you. It is true that having been treated for lymphoma is an important part of who you are, but it is not "all" of who you are. Relationships take time to develop and grow and people do best when they get to know each other in a gradual and measured way. No one should know "all about you" after meeting you once, nor should you know "all about" them. It is not about keeping a secret or withholding information, it is about developing trust and getting to know someone's personality not just the things that have happened to them or their experiences. Perhaps at this point, having been treated for lymphoma seems like a big part of your life but in actuality it is a part of your life that is shared by many other aspects of who you are. As time passes, lymphoma will become a smaller part of your life because you will have more experiences and like everyone else you will continue to grow. A new person doesn’t know if you’ve lost weight; or lost "time" from school or work; they just know you are easy to talk to, interesting to listen to, and the many other things that help begin to create a relationship. You took the time to pick something to wear that you thought looked good on you. It may not be the way you look all the time but naturally you want to make the best impression you can make. Telling a person you meet for the first time your "problems" whether they have anything to do with cancer does not draw some to you but pushes them away. It may seem to you that you are "being honest", "letting the person know the real you", but actually you are sabotaging yourself. Your “listener” can only become overwhelmed. You may have lived with lymphoma for a while but this new person you have just met has not, may not even know what it is or how to spell it. This is called "blowing someone out of the water" and is hardly a way to begin a romantic relationship. Of course, having been treated for lymphoma is important but the relationship you are seeking is between you and another person not between your lymphoma and another person. A potential partner needs to learn about you gradually in a natural way. What are your interests; plans for the future; what do you like in music; in politics?  Being given someone's medical chart to read is hardly an auspicious way to begin a romance or an intimate connection whether there is a health issue or not.

Sometimes new relationships can move quickly to physical intimacy, you should always feel able to slow relationships down even if this seems awkward. You don't need to give a big long explanation. Any woman and any man should always feel able to control the "who" and "when" of physical intimacy. This is an aspect of healthy self esteem.  If the other person in the new relationship has difficulty understanding, how will they understand your feelings about having been treated for lymphoma? The answer is evident. They most likely wouldn't.

Part of looking for a partner is also getting yourself prepared for physical intimacy.  Your body may not associate touch with affection, comfort, or good sensations because of all of the things that happened to you during treatment. You may need to help yourself re-learn that touch can be a source of pleasure. Often a good place to begin relearning this is while bathing. Using a very soft wash cloth or sponge can help. Also experimenting with some of the liquid or cream scented soaps can help you re-awaken your body to touch. Preparing for physical intimacy requires healthy eating and exercise. It is important to keep in mind that lymphoma and lymphoma treatments do not directly impair your ability to enjoy and participate in physical intimacy. Rather, what changes is your energy level, sensitivity to touch, and general interest in being intimate. Increasing calorie intake if you have lost weight, increasing your ability to be more physically active, sleeping during the evenings for longer periods of time rather than napping during the day, will help you feel better prepared for physical intimacy. The sections on Recovery & Fatigue; and Recovery & Self Image; will provide you with information on how to address does aspects of preparing yourself to become physically intimate with a new partner.  It will be important for you to discover what feels pleasurable to you. A safe and comfortable place to explore pleasurable sensations is while bathing. Some people feel comfortable exploring their bodies with their hands, or a soft sponge or wash cloth; others with a shower massage. Getting to know your body again will help you feel more confident when you have an opportunity to become intimate with a new partner.