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    KarenG_WN posted a blog post

    What Is the NCCN and Why You Should Download Their Treatment Guidelines


    Many cancer patients have never heard of the NCCN.

    So what is the NCCN? And why is it important to me? The NCCN (National Comprehensive Cancer Network) is a coalition of 27 prominent cancer centers committed to patient care and cancer research to improve the quality and effectiveness of care.
    You may think this means meetings and conferences just for oncologists, surgeons and other cancer treatment specialists. But the NCCN is committed to improving care on a day-to-day basis whether the patient goes to a large, urban cancer treatment center or a small hospital cancer treatment center in a rural area.
    The NCCN provides up-to-date Clinical Guidelines (treatment recommendations for every cancer stage down to genetic mutation recommendations) for over 30 kinds of cancer.
    How to Download the NCCN Guidelines
    Some patients believe that the NCCN Clinical Guidelines are meant for physicians only. NCCN has a “patients only” section where every cancer patient can download the treatment guidelines for their type of cancer. There is no charge – all you have to do is visit their website. At the top of the page in small print, click on the second link that says: Visit the NCCN Patient Site. No registration is required.
    Simply click on the NCCN Guidelines for Patients. There, you’ll find a drop-down menu where you select the type of cancer you have. You can view it online or download a PDF version. I recommend downloading the PDF because the guidelines are complex. You can read it and refer back to it when your oncologist recommends a particular treatment. Don’t be intimidated by the use of medical terms and the medical names of the chemotherapies – there is a Dictionary of medical terms and acronyms at the end of the PDF so that you can begin to learn the terms that you will hear during your treatment.

    The best way to describe these guidelines is to think of them as a textbook entitled Breast Cancer 101 or Colon Cancer 101. Everything that you need to know is contained in these guidelines. For example, the Rectal Cancer Guide is 94 pages. Breast Cancer, Stages II and III contain 114 pages. The Multiple Myeloma is 78 pages long. If you have a printer, you might want to print the entire Guideline out as your “go-to” reference book.

    What information is contained in the Guidelines?
    *The Basics describes your particular kind of cancer and the stages. *The second part contains information about the tests used to diagnose the stage of cancer and any genetic mutations you have. *The third section provides an overview of treatments from chemotherapy to surgery to radiation therapy and includes information about the *Emerging fields of immunotherapy and targeted therapy. *The fourth segment delves into the treatment options for the different stages of your cancer type. *The final section is designed to help patients make treatment choices and talk to their doctors.

    NCCN has compiled a comprehensive 24-page Reimbursement Guide for patients to help them apply for financial assistance for the oncology drugs they need. Download today to learn what copay assistance may be available for you.
    A mobile app is available for both Android and iOS phone. These were designed to help patients talk with their doctor about their treatment options.
    The NCCN Guideline is the most comprehensive way that you can educate yourself about your cancer. Be proactive and learn so that you can advocate for yourself.
    Join the conversation about the NCCN with this question about it, and how people at WhatNext are using it to keep educated and advocate for their own treatment.
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  • KarenG_WN's Avatar

    KarenG_WN posted a blog post

    My Mom, My Angel - A Son's View of Fighting Cancer

    Our guest blog post today is from Layne Compston, he is the Son of Laura Compston, "LCompston", a 2-time head and neck cancer survivor covering 32 years. His post gives a Son's view of fighting cancer.


    Growing up as an only child had its benefits. For example, I didn’t have to share my toys with anyone. My mom and dad always made sure I had plenty to open when it came to certain holidays such as Christmas. I always remembered having many presents under the tree. My parents would always go above and beyond to get me almost everything I asked for on my Christmas list, within reason of course. It wasn’t easy for my parents to make this happen, my dad was a truck driver making decent wages but working hard to do so. Now my mom was also known for working hard. For as long as I can remember, she has always had two jobs. They varied over the course of my childhood, but no matter what my mom would have her career going and to bring home more money, she would always have a side job making extra. On top of that, she helped run the household. Being young I had no idea the amount of effort and strength that it took to provide for a family the way my parents did. I certainly didn’t realize at that age how much more strength my mom had to have to be doing even half of the things she had been doing all her adult life.
    At a young age, I learned my mom was more “fragile” than most people. She could easily damage her face or get severe whiplash, and it is permanent that way. If a bone was to break on my mom’s face, it would most likely never heal. That’s a scary thought to have waking up every day knowing if you fell and hit your face or got in a car accident, it’s a guarantee it’s going to hurt you worse than most. Also, my mom must use her hand to assist her head to get up from laying down. I’ve observed this over the years and to watch someone that is labeled as “fragile’; someone who should wake up every day and be nervous to drive or fall wrong, just to wake up conquer the day. It’s the most inspiring and motivation thing and I get to see it almost every day.
    All my life people have been worried about my mom, especially my dad and grandmother. They worry about everything she does. They love her dearly and know the severity of everything she’s been through. Me on the other hand, I’ve always looked at her differently. I forget how threatening a lot of things should seem to her because she’s never shown me any sign of fear. She’s always been a literal super-mom. You can ask any of my friends which mom brought all the food and Gatorade to every little sporting event we had. The mom that would drive me and all my friends anywhere we wanted to go. My mom did it all. She worked two jobs and made it to every event I had in school. She taught me how to ride a horse and she motivates me every day by helping me to realize you can do anything you set your mind to.
    For everyone who doesn’t know my mom, she was diagnosed with Stage III Nasopharyngeal Carcinoma cancer at the age of seventeen, the summer before her Senior year of high school. This type of cancer is extremely rare and commonly found in Asia in elderly people and my mom was neither. She told me when she found out she was determined to beat it and that’s exactly what she did. 

    After extensive radiation and chemotherapy, my mom would beat cancer for over thirty years. It didn’t come with a gold medal and an easy life after defeating it. But she got what she fought hard for and that was her life. Years after the radiation settled in, my moms face began to change. She used to have a plump face, as she would call it, but over the years the radiation has slowly made her face and head smaller and smaller. That includes all the features of her head and neck. Resulting in many more issues over the next thirty years. It started slowly and progresses faster and faster as the years have gone on. 
    In my mom’s early twenties and thirties, she would drink Dr. Pepper every day and thought nothing of it. As the years would come along, she had to get rid of all soda from her diet. She then turned to sweet tea and that was her drink of choice anywhere she went. More time went on and the doctors would start recommending more water. Now we get to today's time and she can’t drink or eat anything at all. Nothing can enter her mouth unless she uses a spray bottle lightly spraying water in her mouth to moisten her mouth and throat. Over the years, this was just one of many of the changes that would occur in my mom’s life.
    In my adolescent years, I would watch my mom transform into the fighter she is today; and with all the stories I heard about how she was so strong at seventeen, made more and more sense to me. I would watch her take anyone’s doubt into ultimate belief. The doctors were always astounded at her attitude towards everything. After her first battle with cancer, my mom went on living life. She was working at n Advertising agency during the week and waitressing at a truck stop on weekends when she met my dad. Since that day my parents have been in each other’s lives and always by each other’s side. 


    The doctors told my mom early on she would never be able to have kids, as a woman that’s a devastating thing to process. But my mom never gave up, and after a couple failed attempts she had me. I have been told, of course, that was no cake walk. She was sick her entire pregnancy and her body fought hard to not keep any nutritious food down. When she finally delivered me after a day or two of being in labor, I fell into the doctor’s hands not breathing and black and blue. I was even dry because I had come two weeks late. This terrified my mom after going through a miscarriage previously. The doctors began to resuscitate me and successfully got me breathing and after weeks in the NICU my mom and I were released and once again my mom beat the odds.
    My mom would come to face many differences in life after the result of her first battle with cancer. When I was around eight years old, my mom got sick with Cellulitis for the first time. Cellulitis is an infection that can be deadly if not treated quickly and properly. My mom obtained the infection from getting a root canal done. 

    We were out trail riding horseback at the C-bar ranch like I said early nothing stopped my mom from doing what she wanted to do. Even if that meant riding an animal that at any point could spook and she could fall off and get hurt. My Dad and I would go with her and I would ride the trails with her and we would sleep in her horse trailer camping out. On this specific night, we noticed my moms face getting red blotches on it, we watched it carefully and the next morning it had spread and would eventually spread to half her body. 
    We rushed her to the trusted hospital that has saved her life before, the M.D. Anderson Cancer Center in Houston. Still being very young, I had no real concept of just how serious this infection was so going to Houston was different to me. I would go see my mom in the hospital and she never once looked nervous. She always had this brave happy face that reassured me she would do as she always has and fight head on to beat the challenge ahead. So, watching her enter this massive submarine looking device, called the hyperbaric chamber, was just me watching my mom go on an adventure. 
    Of course, I knew my mom was sick and I would always make her cards and bring her Gund teddy bears, but I was never nervous about losing her. She would always make it seem like what she was doing was never scary and was going to help her get better. I just watched in amazement as she defeated this infection and just kept pushing on. Though beating the infection wasn’t the only challenge, the job she worked at let her go after having to be in Houston in the hospital for a few months while on medical leave. I watched in the back seat as my dad's face grew with anger and my mom with tears in her eyes told him to drive on and she would find something else.

      My mom would go years and only have one more smaller case of Cellulitis from another root canal. She then learned she had to consult with M.D. Anderson before ever having anyone work done on her head and neck. As the years passed, life went on as normal……normal for our family at least. I would make it through high school and my mom had her things that she did differently than others, but no real issues.
    Getting older, I would observe my mom more and watched how she ate and drank. I also watched how she conquered every day, as it was surely not promised. As the years passed, eating was something my mom would struggle with more every day. She would use tons of butter and liquids to help get down even the smallest bites of meat. She burnt bacon till it would fall apart in her mouth, just so she could get the taste. It was hard for her to accept that eating was getting more difficult. She would do anything she had to do to eat and feel “normal”. It was hard for her to eat though. She sometimes would have to chew the food, swallow it, cough it back up and try again because it would get stuck in her throat. She coughed a lot when she ate, and I could tell she was self-conscious of it. I made sure to be on the lookout for anyone to say something to her. I was a momma’s boy all the way and no one was going to mess with her. When I was eight, I kicked a kid in the chest for talking about my mom when she was sick with Cellulitis the first time. I didn’t like my mom being messed with and she was always so grateful for me standing up for her. Being different in any way is hard and for my mom, she was glad to have me and my dad by her side.
    Today, my mom’s life s nothing like it has ever been. She uses a feeding tube for any food or drinks that she needs for nourishment and people can barely understand most of the words that come out of her mouth. She has been without a job for the past two years and this has been extremely hard for someone who has always had two jobs. Her whole life has been abruptly turned around and the world she once knew was brought to a halt. 


    This is due to her running into yet another rare form of cancer, Saliva Gland Cancer. This time the cancer was on the left side of her neck right under her jaw. It happened in the blink of an eye. My mom showed me a small swollen lymph node under her jaw. The next thing I know, they are sending her to M.D. Anderson and the results come back as cancer. 
    At twenty-four years old now and understanding the severity of it all, I can admit I was terrified. My mom had been doing great, but her head and neck had shrunk more over the years and we knew she was more of a risk for any treatment. By knowing just that small part I was nervous. Little did I know that to beat this cancer, she was going to have to go through even more than she had in any of the years prior. 
    To defeat this cancer radiation was the only way to kill it. Chemotherapy does not work on this type of cancer. Now for the average patient, that would be good news and your only question is when do you start, but for my mom, it was much more of a dilemma. She couldn’t simply radiate the area that was affected, her neck was too thin to undergo the radiation. Plus she had already had that area radiated with her first battle with cancer. If they were to radiate her neck their biggest concern was that it would penetrate too far through the skin and focus on the carotid artery and she might possibly bleed out. 

    At that point, my mom was like someone at work questioning the doctors, if that’s not something we can do, then what is something we can do. Forcing the doctors to think outside the box, they came up with a very lengthy surgery that had many risks and was something my mom might not pull through. But if they were to successfully do it, they could kill all the cancer. With odds against my mom, she fearlessly told the doctors do what they had to do to get her better. 
    The surgery was a ten-hour long surgery. This radical neck dissection would result in the doctors taking muscle from a ten-inch incision on her thigh and two important veins from her wrist and placing all of that on her neck after they pulled the skin back and removed the cancerous tumors. Leaving my mom with the muscle exposed on her thin neck. Knowing all of this, my mom was still adamant about doing the surgery because it was the only way. 

    The day of the surgery, I had work and I was a wreck. I was calling my dad every hour, trying to find out any information. So many thoughts were going through my head. My mom had just been blessed with my two sons, her grandsons and she still had so much life to live. This surgery can’t get the best of her I thought to myself. 
    It didn’t. I got a call that night from dad telling me everything was okay, and she was in recovery. Dad and I were so relieved, but that didn’t end her journey, it began her new journey.
    Mom woke up to the doctors telling her that it's going to be six weeks before she will be able to walk again and another six weeks at least till she can move her head. She was then explained her feeding tube process and how her tongue would slowly over time stop functioning completely. Talking was going to be a major issue and over time she might lose that completely. They are concerned that her jawbone is deteriorating at a fast rate and may break soon as well. There were so many concerns and what if’s and do you know what my mom decides to do? She gives it maybe a week and she’s asking my dad to help her get in the walker because she wants to try and walk. My dad was furious. He wasn’t about to have her try walking right now because they just removed muscle from her leg. But if you know my mom, its either you’re going to help her get to where she needs or wants to go or she’s going to do it without you. 
    So eventually my dad gave in and I get a call informing that my mom has been making laps around the nurses’ station every day and going further and further every time. Even the doctors were amazed. That’s when I fully realized that once again cancer could not defeat my mom, she wasn’t going to let it. The hardest part for my mom I think, had to be having the muscle just sitting under her jaw. She was so worried about people seeing it and what people would think. I remembered being at her bedside at the hospital and she’s in tears only in front of me explaining how she felt. She was nervous my children wouldn’t know what to think and how they would react. That’s when I had to remind her just how beautiful she was and how amazing she was and that no matter what, my dad, my children, and I will always love her and never think anything of it. Realizing at that moment that even the strongest warriors need reassurance from time to time. With that reassurance, she wiped her tears away and hugged me and we began to talk about when she was going to be released. 

    Once my mom was released from the hospital she had to lead a new life of eating through a tube and getting comfortable with doing that in front of other people. She is having to learn how to deal with her speech problems and coping with people ignoring her or not understanding her. This year it really made me see that this has been the hardest time for her. Every other time she had been sick, just beating cancer or an infection was enough and she would go back leading her normal life. 

    Now her life was different. She was laid off a few months before finding out about her cancer returning, and after she was back from the treatment she was unable to find a job due to her speech and eating differently 7 times a day. She applied to hundreds of jobs a week and all denying her. My mom is fully qualified and capable to take on any task thrown at her, sure she might be living a new life in certain ways, but she was still that same woman that could take on anything. So, with many failed attempts at finding a job, I could tell my mom felt lost.
    Then one day she started going to speech therapy because it was getting so hard for her and her speech therapist mentioned joining a support group. My mom went to some support groups in Dallas and really enjoyed not being the only one hard to understand or the only one having to eat their food from a tube. This gave her the idea to start a Facebook page for cancer survivors and caregivers so people could have a place to come ask questions or vent about what they are going through and talk to other people who can relate. I recently started getting more involved with my mom by being her voice when other people can’t understand her. Talking on the phone is really not a good option so if she needs to call someone, I do it for her. I’ve even changed out her feeding tube as scary as that sounds.
    Our latest journey is that we are working on a cancer support group ministry to provide more than just a place to vent for people. We hope by having this ministry, we can help meet the needs of others. All in all, I truly believe my mom has begun to find her purpose in life. For the longest, God’s path for her had put her through a lot of traumatic events, but as that old saying God gives his toughest battles to his strongest Angels and that is no exaggeration here. Through all that trauma my mom is able to show that with faith and a will to never give up and never give in, she can keep living to see her son she was never supposed to have, raise the grandchildren she thought she would never have and she can help people understand that giving up is no option. That’s my mom, my Angel.
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    Do you have an inspiring story of surviving cancer you would like to share? Contact us, and let us help you inspire thousands of cancer patients by sharing your story. 
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  • KarenG_WN's Avatar

    KarenG_WN posted a blog post

    Diagnosed With Stage IV NSCLC, But Still Bathing By Myself!

    Our guest blog post today is from Marven, "Biga17133". He is a stage IV, Non-Small Cell Lung Cancer patient that was given no chances of survival. Diagnosed with an inoperable tumor involved in most of his lung, he wasn't given any real hope. But as he will tell you, he's still fighting it, kicking it, and still taking a bath by himself. That's looking at the positive side of everything! This is his journey in his own words. Editor


    My name is Marven but some call me Allen which is my middle name. I am going to be 52 this May. I have a wife, son, 4 step children and 2 step grandchildren (sunshine and buttercup)my nicknames for them. My son and his wife are expecting their first child on May 31, 2018. My Journey with non-small cell lung cancer began in Sept of 2017.
    After a month of having a severe cough that would keep me awake, I went to see my primary doctor. I was concerned as I have been a smoker over 35yrs but Dr. P felt that I was having an allergic reaction to my blood pressure medicine. She changed my medicine and assured me that I would feel better in a week and made me a follow up appt. Well, 5 days later I went to the ER because I was not any better and my head felt like it was going to explode. I've never experienced such pain and misery, I couldn't sleep due to the coughing and didn't know how much longer I could take the pain. The ER doctor agreed that my primary doctor's diagnosis was incorrect and felt that I had a sinus infection and gave me antibiotics. Needless to say that by the time that I followed up with Dr. P, I wasn't getting any better. For weeks I've had very little sleep and I just wanted to get help! They did a Strep test, Why not at this point of misdiagnoses. 
    Then Dr. P decide to ordered a Chest X-Ray. Immediately the technician, breaking all the rules, told me that it was really bad and that my doctor should have ordered this weeks ago as you could not even see my right lung. The doctor now thinks its pneumonia and starts treating me for that. The very next day she calls me and says that after studying the x-ray with others she can see a mass and wants me to get a CT scan then see a pulmonologist week later this doctor does a scan and orders a biopsy which takes a few more weeks. When the doctor goes in he discovers three masses in my right lung and lymph node. The news is not good, he tells my wife and son that I have non-small cell lung cancer and it is inoperable. I have maybe 3 months to live unless I have treatment. He sent me to the Cancer Center in which it took another week to see my doctor there. I was frustrated to say the least when you're told you have very little time you don't want to waste any treatment time getting to the treatment and the lack of urgency made me feel like my life didn't matter.

    Dr. S, my Oncologist, gave me an initial plan of chemo and immunotherapy with the hope of extending my life. He told me that I had 6 months to maybe 1 year if lucky and that I might make the birth of my first biological grandbaby. 
    When the pathology came back I found out that my PDL1 gene count 100% which made Keytruda a perfect treatment for me. The doctor also ordered Zometa for my bones as we have found at this point that cancer is also in my spine and without Zometa the tumor could damage my spine and I would be paralyzed and also a tumor on hip and decided no chemo but Keytruda infusion would be the path but Before that started he consulted the radiation doctor and I received 5 treatments to my chest to help my cough. This gave me throat burn, chest burns and made eating and swallowing nearly impossible. This is when I experienced my first weight loss.
    After my third treatment, my hip started hurting so bad that I couldn't walk. The radiologist thought he could help and I had 5 treatments on it. Still working as I am walking with little pain. In whole the doctor feels that the infusions are working as some tumors have shrunk and others have formed So far I have had 8 Keytruda infusions and they are not to terrible. Sometimes I feel ok and others it takes a day or two to recover from being tired.

    It is shocking when you see the bills sent to your insurance. Thank God that I have insurance because at over $12,500 each treatment I would never be able to afford it. Even so, you are left with balances that can break you. At the same time, I am transitioning from short-term disability to long-term and cobra insurance. Talk about stress! And long-term is taking its time approving me. I need to be approved in order to keep my life insurance through my work. I'm only mentioning this because the lesson I've learned is to get your life insurance outside of work so this won't be on you when a crisis hits and you end up losing your job due to illness and then your life insurance as well.
    The one thing I have noticed is the need to know more and that there may be options out there if the infusions stop working that were I began my search and found WhatNext a support group with people that are going thru the same thing and even the same type of cancer. What I have learned is that I am in control, I make the decision on what's best for me and to ask questions and not to be afraid to say something if I feel it's not best or to get another opinion. The support I feel from whatnext has been key to keeping me sane just knowing I'm not alone in the fight to BEAT this and others understand my sorrow and fears, and my desire to Win is Priceless, still taking a bath by myself biga17133

    Do you have an inspirational cancer story to share? Contact us and let us help you share your story and inspire others!
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  • KarenG_WN's Avatar

    KarenG_WN posted a blog post

    The Power of A Written Note

    I have a 9-year-old son and an 8-year-old daughter. When I was young my parents always made my sister and I write thank you cards after receiving gifts for our birthday and Christmas. I am truly embarrassed to say my wife and I have been very slack about making our kids write thank you cards. 

    Maybe it is because it feels so old school, the kids don’t want to take time out of playing to write, we never have thank you cards when we need them or maybe it is because our kids don’t appreciate getting thank you cards from friends who do write them.
    With time on my hands after Christmas, I put my foot down and got my kids to write thank you notes to everyone who gave them gifts. Three days after the cards went out, my wife gets a call from her Aunt and she is practically in tears. Why? Because she was so grateful to get the thank you cards from the kids. WOW!
    This experience reminded me in this day of cell phones and social media that there is a whole generation of people who long for the days of receiving a handwritten note.
    Thinking about someone with cancer or lost a loved one to cancer, I strongly encourage you to take a few minutes and write a note. If you are dealing with cancer chances are you have some time on your hands. Instead of sitting idle and worrying about your situation, write letters of gratitude to your doctors, nurses, family members or friends. It is hard to feel bad when you are in a state of gratitude.
    Don’t have cards. No problem, use plain old paper or even the back of one of those really long receipts you get at the store (strange, but sure to bring about a smile). Don’t have stamps or envelops, try out Feltapp.com. It is this really cool app that works on your phone or tablet that lets you create handwritten cards for you and mails them. You can even upload pictures.


    Or, send an ecard. I got a birthday ecard last year with William Shatner singing me happy birthday. It blew me away. It was from American Greetings. Here is a link to it: American Greetings Ecards 



    Not sure what to write? We have a blog post for that.
    Love your thoughts
    Over the last few months, I have been thinking about how we could make WhatNext more than just a place people drop in from time to time, but also a place where helpful relationships start and grow. One of my thoughts is to start a WhatNext letter writing club. However, I am not sure if it is a good idea or how to implement it. If you have any thoughts, please share them by posting an answer to my question – WhatNext letter writing group, what do you think?

  • KarenG_WN's Avatar

    KarenG_WN posted a blog post

    Hospice - When Cancer Leaves You No More Options

    "Hospice " - A word that scares a lot of people, and a service that most of us never want to sign up for. But, when that time comes, when all other options have been exhausted, it is a valuable service. Sadly, I have experienced the services of a Hospice service twice, once with each Parent, only ten months apart. 

    Taking care of a loved one through with Hospice during the last days of their life is one of the hardest things I have ever done, and one of the most rewarding.
    While the term "Hospice" is terrifying to even say out loud, once you study, ask questions of the staff, learn exactly what they will do for your loved one, and your whole family, you will realize that it's not a bad thing. Nobody wants to die, but if they have to, I think most would say they would like to do it peacefully, quietly, and with as little grief on their family as possible. 
    My families first experience with using a Hospice service came at the end of my Father's life. He had been fighting prostate cancer for some 15 years. I remember the day he was diagnosed, the young Doctor told Dad, "sir, don't worry too much about dying from prostate cancer because you'll die from something else long before prostate cancer will ever get you." I didn't quite know how to take that statement but soon learned that his meaning was that since prostate cancer grows so slow, he would most likely die from another issue before cancer got him. 
    That might have been true if Dad had been taking his meds all those years that he was supposed to be taking. After his death we learned that he had boxes of medicine stacked up that the VA had been sending him, he never took it after the first couple of weeks because he said he didn't like the way it made him feel. So he just went about life without a worry, other than wondering when that prostate cancer was going to come calling. 

    When it was finally time, Dad had been fighting it off for about 15 years. Then all of a sudden things started to happen. He couldn't urinate, he had to have a catheter. He started losing weight, some things made him nauseous to eat. He was losing weight at the rate of about 10# a month. While at one of his appointments at the VA I demanded that the young newly graduated Doctor do something other than say, "boy, you've lost a lot of weight", like all the others had done. 
    I must have caught him at a moment of empathy. He scheduled Dad for some immediate tests to start finding out why he was on this downhill slide. But, those test only went one test deep. After a cat scan, the Doctor called me to tell me that they needn't go any farther. His cancer had spread to his pelvis, bladder, lungs and they thought most likely the brain also. We were told he may live three weeks to two months, but they really thought it would be more like a few weeks. 

    Dad went downhill so fast it was unbelievable, he was walking the fences on his farm and three days later he was in the ER, and never went back home. I remember the Doctor calling me to tell me that there were no options, Dad's cancer had spread too far, and he had maybe a month to live, possibly only weeks. 
    I had never been through the process of taking care of someone at the end of life before that. I had terrible visions of a slow, painful and agonizing death. I have never been so wrong. None of what I thought would happen, happened. 
    After we contacted our local Hospice service, they came by and talked with us about what to expect. They explained the entire process from Dad's current condition all the way to what would happen in the end. And they hit everyone point right on the head. Dad was given whatever pain meds were necessary to keep him comfortable. Hospice's goal is to make the patient pain free, but not sedate them so much that they are unconscious. 
    As this process started, Dad was still able to talk, eat, get up and go to the restroom, etc. Then slowly things started to change, he couldn't walk any longer, he started eating less and less, he began to sleep more. His body just basically slowed down and came to a stop like a car coming to a stop sign. 

    During this process there was one of the family sitting with him at all times, to get what he needed, be sure he was turned from side to side to prevent bed sores, and provide whatever small thing we could for him. There were none of the horrific things that I thought would be there at the end of life. My Brother was sitting with him as he took his last breath. Peacefully and quietly. 
    While this process was going on, we talked about lots of things from our past and my childhood. Things we had never talked about before. Dad knew he was bad sick, and wouldn't be coming out of this one. That was one of the sad things about watching him slip away, knowing that he still had things he wanted to do, and he wouldn't be able to do them before his time was over. Dad passed away only three weeks after being admitted to the nursing home. 
    Hospice, A Second Time
    After this painful process was over, just two months later my Mother developed a cough that wouldn't go away. That cough turned out to be inoperable lung cancer. That painful process started over again. 

    The difference this time was that Mom had more time. The Doctors estimated maybe six months, she managed to squeak out 8 months. During the first part of this, she was as normal as any other time. We talked, we went places, we did whatever she wanted to do. Our goal was to make this last six months the best time of her life, as odd as that sounds. We cooked her favorite foods, ignored most of the usual rules about "eating healthy" and tried to help her get the most enjoyment out of life that we possibly could. We sat and looked through boxes of old pictures and Mom would tell me everyone in the picture, when and where it was. She was still sharp as a tack. I learned more about Mom during that eight months than I did the rest of my life. 
    My Wife and I moved her into our house and again, at all times someone was there with her. I said this was one of the most rewarding things I had ever done. Some people have a funny look on their face when I say that. This is what I mean: During this time the roles are reversed. During your childhood your parents take care of you, they provide for your every need and will do anything for you. When it's time for Hospice, the roles are reversed. Then it's your turn to take care of them.
    We took care of both Mom and Dad like they took care of us. We got them a drink when they couldn't get out of bed, we helped them to the bathroom, we put socks on their feet when they were cold or got an extra blanket. We cooked for them, went and got special treats that they might like, or anything they wanted. At this point in time, you will take care of every little need that they have. You may think that a sip of water is no big deal unless you have been unfortunate enough to be stuck in a bed, not able to get out and go get what you want. 
    Mom lasted eight months and just like Dad, she just slowed down to a point of sleeping a lot, and simply drifted away. This was a far cry from a description one callous doctor gave me. He said she will "drown in her own blood when the blood vessels in her lungs start to rupture." Isn't that a lovely thing to hear about how your Mother will die, from her doctor? Thankfully, her actual act of dying was nothing like that. It was the hardest thing to watch we have ever been through. But, I am happy that my Wife and I, along with my two Brothers and their Wives were able to be there for both Mom and Dad.

    Nobody wants to have to call Hospice , but when cancer leaves you no more options, they are a blessing. They will allow you to take care of your loved one at home, or even at a Nursing Facility with their help. Being able to be there and provide Mom and Dad with anything that they needed during this time was an extremely rewarding thing. If this time comes for you, don't be afraid, it is the least you can do for your parents in this situation. They have spent their lives taking care of us, it's our time to take care of them. We cannot change the outcome, but we can affect the journey. 
    Have you had an experience using Hospice? How did it go for you and your family?
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  • KarenG_WN's Avatar

    KarenG_WN posted a blog post

    Radiation Therapy, Chemotherapy & Metallic Taste

    Originally Posted at www.Metaqil.com the makers of Metaqil. That metallic taste we get in our mouth after having chemo is a common side effect. There have been hundreds of remedies suggested and written about on WhatNext. I recently ran across this product that eliminates that taste, so I thought it was worth looking into. Here is some information that was originally posted on their website. 

    Radiation therapy to the neck and head can damage taste buds and salivary glands, causing the taste within the mouth to change. This can lead to dysgeusia (metallic taste within the mouth – a taste disorder) by altering the structure of taste buds. This can also cause changes to the sense of smell, also affecting how foods taste.

    Chemotherapy and radiotherapy may cause taste and odor disturbances by destroying taste and smell receptor cells in a short period of time. The turnover rate of normal human taste bud cells is 10 days, and the lifespan of olfactory receptor cells is about 1 week. This makes the metallic taste symptoms seem to come on suddenly.
    According to the American Cancer Society, certain types of chemotherapy and radiation can cause someone to have metallic taste symptoms. This side effect is sometimes called “chemo mouth.”
    The following types of chemotherapeutic agents are commonly associated with taste changes:
    – Cisplatin (Platinol) – Cyclophosphamide (Neosar) – Doxorubicin (Adriamycin) – Fluorouracil (5-FU, Adrucil) – Paclitaxel (Taxol) – Vincristine (Oncovin, Vincasar PFS)


    Taste changes caused by radiation treatment usually begin to improve in 3 weeks to 2 months and can continue to improve for up to a year. If a person’s salivary glands are damaged, sense of taste may not entirely return to the way it was prior to treatment.
    Many struggle to find a solution for “chemo mouth”. MetaQil®, a unique oral rinse helps to alleviate metallic taste in the mouth. This oral rinse is convenient to carry around and easy to use, it is also extremely affordable. To learn more about MetaQil or to order online click here.

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