SIDE EFFECTS by Roy Smith This original e-book published 2012. Copyright © Roy Smith 2012. The moral right of the author has been asserted. All rights reserved. Smashwords Edition, License Notes. This eBook is licensed for your personal enjoyment only. This eBook may not be re-sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each recipient. If you're reading this book and did not purchase it, or it was not purchased for your use only, then please return to Smashwords.com and purchase your own copy. Thank you for respecting the hard work of this author. SIDE EFFECTS TABLE OF CONTENTS Side Effects Introduction Tips for relieving side effects Side effects Roy Smith About Roy Smith Connect with Roy Smith Other books by Roy Smith INTRODUCTION 'All happy families are the same; all unhappy families are different.' So says Leo Tolstoy in his great novel Anna Karenina. I'm not sure I agree. But the quotation did lead me to think in similar terms about health, and to conclude that a contention that 'All good health is the same, all deviation from it is different.' is at least arguable. I have few doubts that everybody's cancer is unique to them, and that to claim to have solutions for everybody would be mistaken. My aim here is to present things that helped me to deal with the thirty-odd side effects of the treatments I received for my own lymphoma; chemotherapy followed by radiotherapy. In my case, these side-effects were far more apparent and distressing than the symptoms of the cancer itself. When I was healthy, I did not explore each part of my body for progress reports, and in turn parts of my body did not send me messages about how well they felt. I took my body for granted. By contrast, when I am injured or not healthy, the affected parts of my body leave me in no doubt, each part registering its own pain. When this is happening, I would do almost anything to relieve the discomfort. Any advice is welcome. And people have been generous in sharing pointers and tips. Why do I feel that we need tips? Surely the doctor or the hospital can help? Much as I am in awe of and admire the skills of the people applying their specialist training to my treatment, I came to realize that they were essentially that: specialists. The days of Leonardo are long gone; no man or woman can be up-to-date in all facets of medicine. An oncologist is an expert in oncology, who has spent a decade mastering that discipline, with precious little time to explore relieving other afflictions to the body´s major systems. I believe my wife and I became the experts in the subject of my treatment´s side-effects and the most effective, least intrusive means by which to relieve them. As I said earlier, I do not believe the recommendations will work for everyone. What does? (For instance, I am allergic to penicillin, which far from curing me is more likely to kill me). Our yardstick for using any advice or tip we were offered was that it demonstrated immediate, noticeable and beneficial results, which were repeatable. ('Scientific approach'.) Luckily for me, all the doctors treating me seemed to have an open mind to anything that helped me. In my case, the doctors were treating the cancer; my job was to cope with the ravages of the treatment. Back to top. TIPS FOR RELIEVING THE SIDE EFFECTS OF CANCER TREATMENT Psillium, Acidophilus, Cascara, and Yoghourt. This is a set of components that work together. It heads my list because it helped keep at bay a most dangerous threat to health during chemotherapy: diarrhea. Diarrhea leaves the patient exhausted, dehydrated, and prone to infection. This gentle combination may be varied to keep a healthy balance between diarrhea and constipation without the purging that accompanies many medications. My normal bedtime regimen was to take 2 tablets of Psillium, 2 of Acidophilus, and one of Cascara. Yoghourt, which with the Acidophilus helps produce the friendly intestinal bacteria is an essential part of this remedy. As a guideline, we increased Psillium and decreased Cascara when diarrhea threatened, reversing this at any sign of constipation. The only time I failed to follow the regimen, diarrhea and dehydration were rampant, and I was admitted to hospital for what turned out to be a nine day stay, three in intensive care. Aloe Vera. The Aloe Vera plant is known by many names, all flattering. It figures so prominently in my list because of its ability to soothe and heal skin, even skin that has been damaged by many injections, burned by radiotherapy, and suffers the torment of post-radiotherapy itch. The gel of the plant applied directly to the skin, as well as Aloe Vera extract juice in bathwater, was astonishingly soothing to me. Bathing. The first tip I received about combatting the post-radiotherapy itch was to bathe in lukewarm water to which baking soda had been added. I found this commonly used skin-soothing suggestion helpful, but it was by comical chance that we discovered a far more effective method. We had been surprised to find Aloe Vera juice being sold as a drink, and even more surprised and daunted by its taste. ´Waste not want not,´ is a good maxim, so we tipped the ´drink´ into my bath. It was amazingly successful, and became even more so when we followed the bath by applying the Aloe gel from the inner leaf of the plant to the most sensitive skin. General tips about bathing are to avoid hot or cold water and to let your skin ´air-dry´ after twenty minutes in the tub. Bag Balm. Originally, Bag Balm was used by Vermont farmers to help keep dairy cows´ udders healthy in a harsh environment, combating the chapped conditions and superficial abrasions that result from each milking. After Aloe Vera and Bathing have helped repair soothe the damaged skin, Bag Balm helps by moisturising and softening it. Hot Pool or Jacuzzi. Nowadays, many of our homes are not equipped with the full-length baths of yesteryear and we have little opportunity to relax in deep hot water. Once I began to regain my strength in the months following my treatment, I found soaking in a quiet hot pool or Jacuzzi a relaxing, soothing experience. If there is an affordable local spa, I recommend frequent visits. Knorr soups. There is a time during radiotherapy, especially when applied to the head, when swallowing will likely become difficult, if not impossible. I have no wish to be seen pushing the advantages of one brand over another, but feel honor-bound to name these soups, which are sold in Europe in tetrapaks. We found nothing to compare with them in terms of ease of use, flavors, and efficacy. The ready-to-heat soups are a double blessing in that they are a smooth puree, which is easy to eat, or drink, nutritious, and also contributes to the patient's important requirement to imbibe at least two liters of liquid per day. Robinson´s Cordials. Again, the requirement to put in and out two liters of liquid each day can become a chore. You are encouraged not to drink alcohol, tea or coffee, and this leaves water. Water is very nice, but eight cups a day can be time and energy consuming, particularly when you are having extreme difficulty in swallowing. A thimble-full of flavor makes the requirement literally more palatable. My comments about naming a specific brand are found in the previous paragraph. Parsley Tea It sounds preposterous, but at one time, for weeks on end, I had to empty my bladder every ten minutes or so, night and day. This of course robbed me of the ability to sleep, and left me exhausted. We found that a glass of parsley tea in the morning immediately helped the situation. One can use dry parsley, but fresh parsley, about 2/3 cup chopped and loosely packed in about 2 cups of boiling water, and then steeped, was the most effective method. Chamberpot. Continuing the saga of the frequent emptying of ones bladder, it was a relief to avoid treks to the bathroom, which tended not only to be dangerous as chemo-related disorientation can occur, but also requires the patient to fully awaken , which can cause further loss of sleep. This is simply avoided by having a chamberpot by the side of the bed. Before and after eating medication. The prescribed medicines on my list are not named because I believe that prescription drugs should be taken only on the advice of doctors. I was prescribed highly effective medications which taken before meals helped prevent nausea and temporarily anesthetized the throat, allowing swallowing with lessened discomfort or pain. Barley Water. Constipation can be agony. Barley water, which is easy to make at home, and is also available at many ´English Shops´, is a gentle help. Tablespoon of cream to soups, cereal, smoothies, etc. My radiotherapy was every weekday for five weeks, twenty-five sessions. During the last three weeks of treatment and for some time afterwards, I was unable to eat solids. Adding a small amount of cream to the liquids I could swallow gave ´body´ to them, and added to my calorie intake that had fallen dramatically. Exercise. I found that two forms of exercise helped combat, and later reverse, the rapid decline of muscle power and skin tone that resulted from as little as a week in a hospital bed. The first was an impromptu self-designed hydrotherapy aerobics routine. I realized that if I did various simple exercises in the warm swimming pool of the spa, then the water removed any strain, while leaving my muscles free to move as they did when I was up and about. The second was, after I had been warned ´not to overdo it´, and I wondered how I would know. The machines in a gym don´t ask how you feel. Then I remembered the Canadian Army´s calisthenics, where you pit one side of your body against the other. It´s wasn´t easy for me to overdo it, because one side of my body naturally returned the pressure it was receiving from the other side. Within a relatively short period of time, my muscles gained strength, and the folds of loose skin tightened, leaving the skin to regain much of its old shape. In General. Be in good shape. I lost count of the number of times my doctors told me how lucky I was to have been fit before my treatments began. As a layman, it continues to surprise me that a person with cancer can be described as fit. But once said, it is easily understood. Cancer at the outset is attacking one part of the body, and just like someone with a broken leg, a person with cancer can be otherwise fit. This is another advantage of looking after yourself when things are going well: if things go wrong you´ll be better prepared to cope. Don´t delay. If you are aware something is wrong, get medical advice. A natural fear of hearing bad news should not stand in the way of dealing with the problem. Visit the dentist. At the end of my radiotherapy, I was told that for two years I must avoid surgery, including tooth extraction. Do everything you can to ensure anything that needs doing at the dentist´s is done before you begin radiotherapy. Be prepared. The side effects of treatment will be severe, and I was advised that it would be perhaps two years before I´d be free of some of them. Take action to prevent nasty surprises: have your hair cut short before chemotherapy because it is almost inevitable that chemo will cause your hair to drop out, suddenly and completely, and you will be shocked. Also, for nine months, I´d heard that radiotherapy was less invasive than chemo, and then, only a week before it was to begin, the radiotherapist shook her head, 'Not when the therapy includes the head!´ she warned. She was right. At the same time that you are coping with the physical side effects of your treatment, you are likely to find yourself in situations that would previously have embarrassed you, but my experience was that my mind and body quickly rejected such emotion. I simply needed help. Perhaps the best help you can have with dealing with these side effects is to have the help of a strong carer. This is likely to be your partner in life. As with being in good shape, it helps to be in the right relationship. I was lucky enough to have the right partner. Back to top SIDE EFFECTS. We didn´t discover how to mitigate some of the following side effects, but knowing they were likely to appear lessened their impact. Some of them may be temporary, for instance on two occasions I spent a day or two deaf in one ear. All I could do was hope that the situation would reverse itself, which has since happened. There were other side effects that acted in a similar way. A click on the name of any of the side effects shown below will link you to one of the tips or indicate those that came and went, mostly without attention, others that have appeared intermittently, and a few have persisted throughout the past eighteen months. Appetite. Balance. Beard. Chemo took my hair, Radiation zapped my beard. Both are recovering without attention Breathing. Cramp. Concentration. Confusion. Constipation. Cough. Diarrhea. Emotional. Energy. My energy level seems to vary from day to day, even during the course of one day. The only thing to do was to take medical advice and avoid all strenuous activity. Fatigue Fingernails. My fingernails were fine through chemo, but deteriorated during radiation. Luckily they are now strong again. A woman friend was not so lucky; hers remain very fragile. But she says it´s a small price to pay, and solves the problem by covering them with artificial nails. Hair. It is more than likely that you will lose your hair during chemo. It is also likely that it will grow back, sometimes altered. My hair changed color. Hallucinations. Ask if any of the drugs being administered are hallucinogenic. Advance warning can save the carer heartache and worry. The patient can be quite happy, unaware of talking gibberish, or have vacated his/her body for the time being. The carer witnesses the problems, but the patient does not. After one extended and vivid hallucination, my wife confessed that she feared that I had 'gone', and wondered if I would ever return. How powerful the hallucinogenic drugs can be is revealed by the oncologist´s story about one of his patients, a woman who called the police after she woke to find a strange man in her bedroom. When the police arrived, they discovered the man was her husband and not the burglar she had feared. Hallucinations are much worse for your carer than for the patient. Immune System. Chemo leaves us with impaired or no immune system. The patient will be vulnerable to infection. We took extreme pains to avoid exposure. We were extremely diligent washing our hands thoroughly and often. Perhaps the most difficult part was in restricting our social life. Going out to dinner presents a double exposure: from the friends themselves, the other diners, and from the preparation of the food and hygene of tableware. We were told that this would take some time to correct itself. Handwriting. Hearing. Incontinence. Itch. For about two months , from the third week of radiotherapy my entire skin was itching 24/7. Memory Mucus. Muscle and Skin Tone. During the treatment I found that even a week without exercise resulted in a noticeable weakening of muscle and a loosening of skin. Nausea. Nosebleeds. Numbness. Eighteen months on, my fingers and toes always feel numb. Most of the awkwardness and inability to sense by feel and touch has disappeared but the tingling sensation is everpresent. Running nose. Shakes. Skin Damage. Skin Dryness. Sleep. Smell. I am referring to the ability to sense aromas, bouquets and their counterparts and not to emitting them. Sore mouth. Swallowing. Talking difficulties. Taste. Tension Textures. Tiredness Urine Frequency. Urine Quantity. Vomit. Weight. Back to top Corrected itself without attention. Back to top Appeared intermittently. Back to top Persisted throughout eighteen months. Back to top About Roy Smith Roy shares his time between Spain and California. He and wife Martha have spent the past twenty years travelling the world. Roy´s non-Hodgkins naso-pharyngial lymphoma was diagnosed in August 2010. Chemo and radiotherapy have been successful in so far as the lymphoma is currently in complete remission. He is currently preparing a play, another novel, and two books of short stories. Back to top Connect with Roy Smith You can contact Roy at roymww@yahoo.com He is always happy to receive comments and critiques about his work. He is willing to meet with Readers´ and Writers´ groups. Back to top Other books by Roy Smith Novels ROUGH MR WILSON'S WOMAN THE ALMOST MAN Short Fiction THE LOSS Nonfiction A GLIMPSE OF ALASKA WANDERLUST Back to top