Kirklin Clinic Head & Neck Cancer Support Group, Birmingham, AL
distributed by American Cancer Society
Pat Sanders, Editor
Emotional Byproducts of Cancer by Pat Sanders
Any major change in your life may create a shift in your relationships that cause far reaching adjustments. Cancer is a very major change and prolonged treatments seriously change everything in your life. Those who come through this kind of crisis will sometimes find they do not feel the same as they did toward their partner. The dependency balance may change. One of you may love the other even more, or maybe less. Likes and dislikes can change and the behavior of one may make the other respect them more for what they are capable of or less because their behavior under stress is not what was expected. Let’s look at a married man (it works both ways) who has to have a laryngectomy and ask some questions that are tough to answer about both sides of the relationship. You and your mate are the only ones who can answer these questions.
Seeing a professional for marriage or relationship stress might allow each person to define problems that they cannot bring themselves to discuss with each other no matter how close they are or how much they love each other. It can be fear of taking that open a step or the inability to speak of a problem because of the deep hurt it will cause the other person. In some cases the person feels that it has been said so many times and in so many ways that repeating it is useless....and, if that is the case, they feel they are screaming in the wind and their words are blown away.
My comments are not directed toward any one person’s situation and I hope it is far removed from what you have experienced but it might help some to understand a little of what could be going on with your own lives and partners. You and your caregiver might have had one or more of these problems. Let’s look at what changes have been necessary in everyday life since cancer joined the family?
FINANCIAL STRESS - Is he still the wage earner? Is he trying to go back to work before he is ready because he has to? Did he have to change the type of work and take a lesser position? Is he now home permanently? Was he able to obtain disability income? Did she work and has being off work, to be with her husband, damaged her job dependability and earning ability? Has this cut their income so both are worried about finances? Did she have to go to work after not working and did she have to have job training to even be hired again? Did any of this change the financial balance of your lives?
EXTREME FATIGUE - Is he exhausted from the physical and emotional stress of the surgeries, radiation or chemo, not sleeping, the coughing, pain, and discomfort? Is she exhausted from the effort to listen and watch him, to be there when he needs something, to understand and help him while she still tries to keep up with the everyday chores?
CHANGING ATTITUDES - Is he resentful and angry that this happened to him or is she resentful and angry that this happened to her? Does he refuse to eat what she prepares, pay no attention to what the doctor says to do, or resists learning to talk again? Does she ignore him or does she feel it is her responsibility to get him well and is she overbearing in trying to do too much and force him to do the same? Does all of this surround and take over their lives? Do they love each other but each find the other unbelievably irritating?
SOCIAL - Are they staying at home and avoiding old friends? Are they able to eat out in public anymore? Do they watch mindless TV so they don’t have to try to communicate? Do they no longer go to their religious services or have people over for dinner or to visit? Does he refuse to go out and is she afraid to leave him? Are they lonely together?
ANGER – Do they take out anger on each other? Are things left unsaid or is too much said? Do they lay blame because of smoking, drinking or waiting too late to go to the doctor? Are they angry at the professionals because they were not saved from this or because they feel there had been a misdiagnosis? Is either of them bitter at life?
While any one of the above may or may not cause a loving relationship to dissolve, they can cause changes in the way one of them feels toward the other, their union, and their lives. One or both may be thinking, “I don’t want to live like this the rest of my life.” Or “What happened to the person I married?”
It is natural to have some depression when you have the loss of your health (even for a short period of time) and it is natural for this to affect both so one person can’t fix it alone. If these are problems that affect both of you, tackle them together, one problem at a time, before they grow insurmountable. Get some help from a professional counselor if you feel this would help. That person may not be able to fix your job situation, but may be able to help you each deal with anger, hurt, frustration and confusion. You can make one step in the right direction by treating your partner with respect and caring. Start now. Even the best of marriages or relationships can be damaged if you don’t deal with these emotional byproducts of cancer.
INSURANCE COVERAGE – Explain needs well
Insurance policies may be vague about more unusual items like artificial larynges, but your policy should tell you if it covers things like artificial limbs. If your insurance would cover an artificial leg for you, after the loss of your own leg, so that you would not have be in a wheelchair for the rest of your life, then it should cover an artificial larynx for you so you can speak again and are not left with writing or gesturing to communicate for the rest of your life.
An electronic artificial larynx is a true prosthetic device - a replacement for a part of the body that has been lost or that is no longer functioning. It is considered a prosthesis by Medicare, Medicaid, the Veteran's Administration and almost any insurance company that takes time to think about it. The important thing is making sure that the insurance company examiners understand that it is a prosthetic device. If you, the doctor, or someone helping you is writing or speaking about it, don’t call it a "speaker" or a "talk box" or an "amplifier." Always refer to is as a "prosthesis", "prosthetic device", or an "electronic artificial larynx."
Tracheostoma covers, from the little foam patches to the HMEs (Heat/Moisture Exchangers), are really artificial noses - they warm, moisturize and filter incoming air. The HMEs that seal around the stoma will do the best job, but many other covers/filters will definitely be helpful, especially when securely tucked under the clothing. Medicare is now reimbursing for many of these products and insurance often follows the Medicare lead on it. It is very important that you have a written order from your doctor for the products you use - the more detailed the better - mentioning name, number to purchase, frequency of replacement – and explaining that these devices act as artificial noses for someone who has lost the function of the nose. Hopefully, on stoma covers/filters/HMEs, the doctor can give a standing order for the product(s) you use to be supplied regularly and then you can just send in a copy of that doctor’s order each time you send a claim.
Doctors are busy and don't like to write much, but if you, the doctor, the speech pathologist, the respiratory therapist - someone - can supply some reasonable DETAIL about the product and the need, you have a lot better chance of coverage initially or if you do have to appeal.
A good number of insurance company denials for laryngectomee products are probably because the claim does not include sufficient information about the product and the need. Examiners see dozens of claims a day for diabetes, heart problems, etc. But any given examiner may see a claim for laryngectomee products only occasionally, so the need and the product have to be explained very well. You want the examiner to read it and think, "Yes, that's obviously a prosthetic device and it makes sense that our insurance company would cover that." Otherwise, he/she may turn it down to save the time and hassle of looking into it further. Examiners no doubt get some sort of efficiency rating on how many claims are handled a day and if they have to spend a lot of time looking up information to figure out the products, they may not bother. They may just deny it and figure it is another claim that has been processed that they won’t have to think about anymore.
Any denials on products for laryngectomees should definitely be appealed unless the insurance company can show you in writing that such things are specifically excluded from coverage. The insurance company's own paperwork should tell how to appeal. Do it!! Help teach them about the products you need. The more the examiners from Medicare, Medicaid and insurance companies learn about laryngectomee products, the easier it will be for all laryngectomees to get coverage routinely without as much hassle.
Dorothy Lennox firstname.lastname@example.org
Luminaud, Inc. http://www.luminaud.com/
This beautiful, sad, prose was written under the name of Katherine Hamilton
Hello my Friend:
I awake each day in fear. I let the dog out. I take a pill for my ever present pains, knowing it will put me back to sleep. I read my e-mails; sometimes I answer them, or wait until later... I no longer drink coffee, or rarely... I smoke a cigarette, and the hot taste lingers in my mouth, but I feel little satisfaction... maybe some nicotine stirs my brain.... I send cards and pictures to strangers from a conference, who will be momentarily surprised, pleased and then forget... Why? I do not know. Some long ingrained habit... of being polite.
I no longer know how to talk, it has been too long since I have talked easily. I pet my dog, who waits patiently by my side, to see where I will go next. Sometimes we walk... as the sun gets hot, my pills have started to take effect and I grow sleepy. I go back to bed after carefully cleaning my teeth, removing the fluoride carriers from the night before. One is lost... I forgot and ate with it on last night.... soup, pasta. This morning I try a cinnamon roll; I used to love them. It is dry, and not nearly as good as my Mother used to make. It sticks in my throat and I eat the icing, then give the bread to my dog. She loves it and waits expectantly for the next bite. I listen to the ducks in the canal calling out for food.... or just for the fun of talking. How I used to love to talk.... and act... and cut up and joke. Now I can only smile, and give the "high thumbs up".
I'm told I'm lucky to have so many friends, but each day I awaken, I forget anew that anyone is there. I am alone... and part of me wants to be alone and forget that I have any responsibility, except to me and my dog. We are alone in silence and that is OK. I ruffle her fur… she likes it. As sleep grows, I move from the deck to the living room, smoking one more cigarette that I know will kill me, perhaps not today or tomorrow but some day... I don't care today. I start up the stairs, and take off my shorts. Lady lies by the bed, knowing that I'm going to sleep with only a tee- shirt on. I pick up my current novel and read until I can hold my eyes open no longer. I welcome sleep... and peace- ful oblivion. I awaken a few times and shift positions, and then finally awaken for good, my stomach grumbling.. I drink Slimfast... and put on my shorts. My dog looks expectantly, to see if we are going outside again. She walks a short distance with me, and then returns upstairs to the balcony.... the table is piled with papers to be gone through; bills to be paid; business letters to be written.
My tooth hurts, and it reminds me that I have not written the oncologist-dentist, as my own dentist has requested. I cannot put weight on the back molar... soup again tonight but the cupboard is bare, and I will have to go out.... and face people. I don't want to. I'd rather not eat.
Today is a particularly bad day... not that it is a bad day, only that I am doing nothing to further my life, my goals... what goals? To exist... to exist for my dog... to exist for my friends. I do not pity myself, but I am still angry and I'm tired of being angry... I'm tired of trying to be OK for everyone else. I'm just tired... of trying. I sigh and take my pills, maybe my thyroid will kick in one of these days, and I'll have some of the old spunk back. I hate to face the day, but I hate worse to face the night... even my dog does not help then. Occasionally I play a game of "hide and seek" with her, and she likes that... she hides under the coffee table and thinks she's fooled me, until I get her and pet her, then she runs upstairs and hides on top of the bed... she knows I'll find her, and waits for the pets. She grins, and I smile for the first time today.... she is the only one who can make me smile... she loves me absolutely, asks nothing in return, but a small amount of food and water.
God, I do not understand what has happened to me and I would cry if I could, but tears run down my nose that I can no longer blow, and I can make no crying sound, which seems so important to the release of emotions. I will walk tonight. My dog will enjoy that... and it will help me. There is a full moon now and that is beautiful.... I must work or read; I cannot stay in my head. I do not like it there.
I have new doctors to see; but I am so afraid of pain, and useless hope and there are so many who are so much worse off than me, I feel guilty even feeling this way. I can cover my visible scars; but not the invisible ones, which hurt so much more. Why do I care? Why do I even try to get better? For what? For whom? This is one of the bad days... tomorrow will be better I know... I have ridden this roller coaster for over two years now.... I will be better tomorrow....
Thank you for being there, my friend.
ALL THE NEWS THAT’S FIT TO PRINT
Lately, I have been running across news in my morning paper that could be hazardous to my health. Not only do I read the sad news about dangers to our soldiers, the scary news about the hurricane attacking our shores and the political battles that are so irritating. This morning, I started to have my breakfast and read the Lifestyle section. That includes warnings that can, in themselves, drive up my blood pressure and give me a headache!
I found that, even cheating on the answer to a test about diabetes, I can’t avoid being told I am a good candidate. Just being over 65 gives me five bad points and I’m enough beyond that I can’t deny it. Weight counts and I am 11 pounds beyond their chart. They have no sliding scale so I immediately have to add 5 points. If I were one pound over, I would still be in the same category, so why worry about the extra 10 pounds?
Then I read that UAB is doing research on possible damage to lungs from Ozone. And that telemarketers are stealing all of our money. If I turn to the computer pages, I read about worms and viruses. Even the funnies aren’t funny anymore. If this is really all the news that’s fit to print, I may just read a book. Pat Sanders