• KarenG_WN's Avatar

    KarenG_WN posted a blog post

    Adding Life to Your Years

    You’ve just finished your last chemotherapy session, or you’ve just had your last radiation treatment. Or your pathology report from your surgery showed clean margins, no residual tumor and no positive lymph nodes – so you won’t be needing adjuvant (mop-up) chemotherapy. They tell you, “We’ll see you in three months.”

    “WOW,” you think. You’re happy and relieved. You look forward to getting back to normal. And then that little devil named “DOUBT and FEAR” whispers in your ear, “Yes, but what if it comes back?”
    What can we do about our fear of recurrence?
    Hopefully, all of our oncologists have told us what we can do to help prevent a recurrence. These suggestions include: • Lose weight, if you are obese. • Eat healthier foods – more fruits and vegetables, less red meat, more fish. • Limit alcohol consumption. • Stop smoking. • Exercise regularly – 150 minutes weekly is ideal. • Follow your oncologist's recommendations about vitamins – i.e., breast and colorectal cancer patients are usually advised to take higher doses of Vitamin D3. • Reduce stress.

    These are the behavior modifications that we can make to help prevent a recurrence.
    The only additional “thing” that we can do is to keep our appointments for blood work and scans. Every person’s cancer is different – age, overall health, stage, location and number of mets if Stage IV, pathology report, response to treatment, genetic mutations, family history, social history – so we’re all different.
    ASCO (American Society of Clinical Oncology) and NCCN (National Comprehensive Cancer Network) have developed surveillance guidelines for each type of cancer, according to each stage, for what our oncologists should do to help detect a recurrence early so that it can be treated effectively.
    So the bottom line is that lifestyle changes and surveillance is ALL that any cancer survivor can do to prevent/detect a recurrence. Obviously, if we have symptoms like we had before, develop new symptoms like shortness of breath, serious fatigue, weight loss, blood in our stools or urine, frequent/severe headaches or persistent pain … then we need to call our oncologist. Reporting any new symptoms is part of our vigilance.

    What if we can’t stop worrying about our cancer coming back?
    Some people, however, experience fear so severe that interferes with their daily life. This fear takes many forms – insomnia, anxiety, fear of every little ache and pain or cough – even worse, some people may find that they can’t enjoy their favorite hobbies or other activities because fear has taken over their life.
    All of us are different, and each of us has to find our own peace of mind in our life after cancer. Some of us expect to just pick up where we left off. But we may find that it’s not that easy. Someone at work may have assumed some of our duties. Another family member may be doing what we used to do for family gatherings. There will be a time of adjustment as we find our “new normal.”

    Don’t feel that you have to live up to others’ expectations. There is no scientific evidence that keeping a positive attitude helps prevent recurrence. If you need some time to feel sad and reflective about what you’ve experienced, that’s OK.
    But there comes a time after our treatment ends when we must learn to live with a degree of uncertainty in our life. None of us will deny that we don’t have some fear of recurrence – we wouldn’t be human if we said that we didn’t have some worry or fear. Usually, this uncertainty is worse in the first year after treatment.
    But, for some people, the fear of recurrence becomes crippling. This fear results in sleep deprivation, inability to stay close to family and friends and loss of interest in our favorite things. If you feel anxious every day, if you feel so fearful that you cancel a follow-up visit or cancel a scan or other surveillance procedure (colonoscopy, lab work, bone marrow biopsy) because you are too afraid to learn the results, it’s time to acknowledge that you may be suffering from serious anxiety and/or depression.

    How to find help for your fear of recurrence
    There are lots of effective options in addition to seeking professional help. Here are some ideas that may help.
    Talk to your healthcare team – ask them for help in accepting that there is a chance of recurrence • Join a support group – being part of a group of cancer survivors is liberating. You’ll discover that you are not alone in your fears, and you’ll hear how other cancer survivors accept uncertainty while living a full and productive life after cancer. • Manage the stress in your life – reduce your work hours for a while, begin an exercise program, resume an old hobby or start a new one and learn how to laugh again. • Learn more about your cancer type – knowledge is power – your oncologist can help you know what symptoms are a concern so that you learn to ignore routine aches and pains. • Gradually take back control of the work and/or household tasks you used to do. It takes a while to regain your strength but regaining control of your life help you feel empowered and not a victim. Well over half of what you worry about will never happen. If you have a well-founded worry, like not being able to pay some medical bills, be proactive and call to make arrangements. • Endeavor to live one day at time. Savor your morning coffee. Allow a spectacular sunrise or sunset to send you scurrying for your camera. 

    Relish a well-cooked meal. Embrace your pet and let them know you still love them. Live in the now. If none of these help, seek professional help. There is no shame in needing help. Cancer is a life-threatening illness. Everyone recovers at a different pace.
    Remember the day we were diagnosed. One of our first thoughts was, “Am I going to die?”
    Keep in mind that we didn’t go through all of the chemo, surgery, radiation and other procedures just so we could sit at home afterward being afraid. We endured what we endured so that we could live.

    No one is promised tomorrow. Today is the day we have … live life to the fullest.
    Related Articles

    A New Kind of Therapy-10 Things to Keep Your Mind Off Cancer

    Staying Positive And Keeping The Fear of Recurrence Away

    Moving Into Survivorship After Cancer

    Creating A Survivorship Plan For Life After Cancer

  • KarenG_WN's Avatar

    KarenG_WN posted a blog post

    Cancer Patients After The Mid-Term Elections

    How Will We Be Affected?
    The mid-term elections are finally behind us. Regardless of which political party we supported, those of here on WhatNext.com share a common thread – either we have cancer or a loved one has cancer. That is the tie that binds the WhatNext family together. Exit polls showed that 4 out of every 10 voters felt that healthcare was the #1 issue facing the United States. Seven out of 10 believed that our healthcare system needs to be reformed.
    The Democrats now control the House of Representatives, and the Republications are 60 votes short to override a filibuster. An additional change in demographics is that the House will now have 100 women, a political first.
    Although there is still a great political divide to be healed, there are a few promising things that we can expect.
    Affordable Healthcare Act (ACA)

    Most experts believe that there won’t be a concerted effort to destabilize the ACA in 2019. Rates vary greatly from state to state and by the level of plan selected. It is unlikely that there will any change in pre-existing conditions access. That is a HUGE relief to any cancer patient in active treatment or any cancer survivor.
    The Bipartisan Health Care Stabilization Act may be revisited again in 2019. The goal would be to stabilize the individual healthcare markets. There is also bipartisan interest in controlling drug prices and to protect patients from balance billing from out-of-network providers. There will still be “fights” on the floor about short-term plans and haggling over the possibility of states modifying key ACA provisions to provide lower cost policies.
    However, in the long haul, consumers should have access to healthcare insurance through the Affordable Healthcare Act for the foreseeable future.
    Because Medicaid is administered by each state, state elections were hotly contested too. In several states, voter initiatives and the outcome of the governor’s race make it likely that Medicaid will be expanded in those states. Voters in Nebraska, Idaho, and Utah voted to expand Medicaid. Maine, Kansas, Michigan, and Wisconsin are more likely now to expand Medicaid. 

    However, other states’ residents may not be so fortunate. Ohio’s new governor vowed not to expand Medicaid as did Georgia’s new governor. Federal Courts may also be involved.
    Medicaid may also see the courts deciding about work requirements in several states, most notably Kentucky and Arkansas. The Supreme Court, with two new justices, may also readdress the ACA – some 20 state Republican governors and attorney generals have claimed that the Congress’s repeal of the individual mandate invalidates the entire Affordable Healthcare Act.
    The Bottom Line …
    For now, the Affordable Healthcare Act is safe for 2019 – people with pre-existing conditions can still get health insurance – good news for all of us with a history of cancer. With healthcare on the minds of so many Americans, healthcare is bound to get a lot of attention during the next two years leading up to the 2020 Presidential election.
    WhatNexters may want to become more active regarding healthcare because our lives depend on a viable healthcare system
    with Medicare, Medicaid, and private insurance being the three legs of the stool that provide access to healthcare when people need it most – when they or a loved one is diagnosed with cancer.

    Related Articles

    Cancer And The Americans With Disabilities Act

    The Cancer Insurance Checklist - A Helpful Tool When Shopping For Health Insurance

    How to Talk to Your Insurance Company About Your Cancer Claims

    Proven Ways to Control Stress and Anxiety

  • KarenG_WN's Avatar

    KarenG_WN posted a blog post

    Keeping Your Medical Records Complete And In Tact

    Are you overwhelmed with the amount of paperwork that the diagnosis of cancer brings? Here are just a few of the examples of paperwork you might have:

    Bills for chemotherapy and radiation • Hospital bills • Imaging bills for CT scans, PET scans and MRIs • Pharmacy receipts • Receipts for physician copays • Monthly explanation of benefits from your insurance company • Lab results • Scan and other imaging reports • Pathology reports from surgeries and/or biopsies • Genetic testing results • Treatment summary of chemotherapy treatment and/or radiation treatment • Discharge reports from the hospital • CD disks of your actual scans

    Do you just throw them in a box? Or do you have some sort of organization so that you can find important documents when you need them?
    Why is it important to securely store your medical records?
    Cancer is a serious disease, and its treatment is complex. Patients may forget important details regarding their treatment. Why do you need to maintain your records?
    Medical facility closes and/or physician retires. With so many private medical practices being acquired by larger healthcare corporations, be sure to obtain older records that pertain to your cancer treatment in the event the facilities closes or your physician retires. • State laws vary. The laws in each state differ as to the minimum period that a physician or a hospital has to keep medical records. • Get lost if you move. If you’ve piled all of your medical records in a box, you might inadvertently throw them away as you’re packing to move. • Natural disasters. What if you still in treatment and forced out of your home because of a hurricane, tornado, flood or wildfire? You might be forced to relocate for quite a long time because your home or apartment was destroyed. • Late side effects from treatment. Unfortunately, the treatments that save our lives may also cause some late side effects. These late side effects include dental problems, nerve damage, heart problems, secondary cancers, lymphedema and many more. Most of us can’t even pronounce the names of some of the chemotherapy drugs we were given – much less remember them for many years.

    Where should I store my medical records?
    Some records are so important that they should be stored off-premises in a safety deposit box or use Microsoft Health Vault. Critical documents to store off-premises would be irreplaceable documents such as:
    Surgery pathology report • Biopsy pathology report • Genetic testing report • Staging scan • Baseline scan after treatment • Chemotherapy treatment plan • Radiation treatment plan

    These documents would be almost impossible to recreate and could be invaluable should your cancer recur. You may have reached your lifetime radiation dose or lifetime dose of certain platinum-based chemotherapies. A new pathology/mutation report can be compared to your old reports to check for genetic mutations.

    When I was in active treatment, I set up a Microsoft HealthVault
    so that all of my lab results were delivered to the HealthVault. Patients can upload scanned reports and even upload a CD of images generated by a CT, PET or MRI scan. There is no cost for a personal account. How to organize all of the paperwork that doesn’t need to be stored off-premise?
    First, decide how to organize your bills, your explanation of benefits from your insurance company along with all of the miscellaneous receipts and records that you’ve accumulated. All receipts need to be kept for three years from the date that you filed your taxes.
    You have several storage options.
    Scan them all and store on your computer. Store a backup copy on a jump drive and keep in a secure place in the event of a computer crash. Don’t forget to shred your documents after you scan them – don’t throw them away. They contain too much personal information that could help a thief. • Use a 3-ring binder, desktop divider with folders or a file box with hanging folders
    . It’s worth a trip to an office supply store to find the easiest solution that suits your needs.
    Although it’s a little more work, organize each provider’s documents by date, oldest to the newest. Then you can find what you need. Consider a hanging folder filing system. You can sit in your chair while looking for what you need and you can roll it in a closet to keep it out of sight.
    On one of these rainy or snowy winter days, make plans to get your medical records organized
    . You’ll be glad that you did. 
    Related Articles

    5 Side Effects of Head and Neck Cancer Radiation Treatment You Must Know

    You've Finished Cancer Treatments....What's Next?

    When Bad Health Causes Roll Reversals Between Parents and Children

    Cancer and Americans With Disabilities Act

  • KarenG_WN's Avatar

    KarenG_WN posted a blog post

    Questions to Ask at Your First Oncologists Appointment

    When you're diagnosed with cancer you may experience what some people describe as a "blacked out" type of sensation. You are looking at the doctor, he's explaining what you have, and maybe even going through the steps that are to come next, but you are not hearing it, or cannot remember what the doctor said. 

    This is why it's a good idea to have someone with you when you go to all office visits. Your partner can help remember, take notes, and ask questions that you have thought about beforehand, and if allowed, even record the session on your cell phone voice recorder.
    Since this is a common problem with cancer patients, both newly diagnosed and those that have been in treatment for a while, we asked the WhatNext Community what questions they thought should be asked when at the doctor's office. These questions are from a wide variety of cancer diagnoses, so some of them won't apply to you. This is by no means a complete list of all questions that could be asked, but some that our members either asked or wished they had asked. And obviously, you won't ask every question on the list, just pick out those that concern you. 
    Keep in mind that doctors aren’t the only ones who can give you information. Nurses, resident doctors, nurse practitioners, even some of the techs can provide some answers to certain questions. Browse through this list of questions and write down the ones that would pertain to you and your type of cancer. Not all of these will pertain to you. 
    When you’re told you have cancer
    Exactly what type of cancer do I have? How big is the cancer? Where exactly is it? Has the cancer spread to my lymph nodes or other organs? What’s the stage of your cancer? What are the different stages of cancer, which are more serious? Will I need any other tests before we can decide on treatment? Do I need to see any other doctors or health professionals? What is the hormone receptor status of my cancer? What does this mean? What is the HER2 status of my cancer? What does this mean? How do these factors affect my treatment options and long-term outlook (prognosis)? What are my chances of survival, based on my cancer as you see it? (Remember, survival statistics are just numbers) Should I think about genetic testing? What are my testing options? Should I take a home-based genetic test? What would the pros and cons of testing be? How do I get a copy of my pathology report? If I’m concerned about the costs and insurance coverage for my diagnosis and treatment, who can help me?

    When deciding on What Type of Treatments 
    What are my treatment choices? How much experience do you have in treating this type of cancer? What treatment do you recommend and why? Should I think about taking part in a clinical trial? What would the goal of the treatment be? How soon do I need to start treatment? How long will treatment last? What will it be like? Where will it be done? What should I do to get ready for treatment? What risks or side effects are there to the treatments you suggest? Are there things I can do to reduce these side effects? How will treatment affect my daily activities? Can I still work full time? Will I lose my hair? If so, what can I do about it? Will I go through menopause as a result of the treatment? Will I be able to have children after treatment? Would I be able to breastfeed? What are the chances the cancer will come back (recur) after this treatment? What would we do if the treatment doesn’t work or if the cancer comes back? What if I have transportation problems getting to and from treatment? Should I get a second opinion?

    If you need surgery
    Is breast-conserving surgery (lumpectomy) an option for me? Why or why not? What are the pros and cons of breast-conserving surgery versus mastectomy? Will I be able to move my arms, legs, etc? How many surgeries like mine have you done? Will you have to take out lymph nodes? If so, would you advise a sentinel lymph node biopsy? Why or why not? What side effects might lymph node removal cause? How long will I be in the hospital? Will I have stitches or staples at the surgery site? Will there be a drain (tube) coming out of the site? Will I be able to eat after surgery (if surgery to neck/throat) Will I need a feeding tube? How do I care for the surgery site? Will I need someone to help me? What will my breasts look and feel like after my treatment? Will I have a normal feeling in them? What will the scar look like? Is breast reconstruction surgery an option if I want it? What would it mean in my case? Can I have reconstruction at the same time as the surgery to remove the cancer? What are the pros and cons of having it done right away or waiting until later? What types of reconstruction might be options for me? Should I speak with a plastic surgeon about reconstruction options? Will I need a breast form (prosthesis), and if so, where can I get one? Do I need to stop taking any medications or supplements before surgery? When should I call your office if I’m having side effects?

    During treatment
    Once treatment begins, you’ll need to know what to expect and what to look for. Not all of these questions may apply to you, but asking the ones that do may be helpful.
    How will we know if the treatment is working? Is there anything I can do to help manage side effects? What symptoms or side effects should I tell you about right away? How can I reach you on nights, holidays, or weekends? Will I need to change what I eat during treatment? Are there any limits on what I can do? Can I exercise during treatment? If so, what kind of exercise should I do, and how often? Can you suggest a mental health professional I can see if I start to feel overwhelmed, depressed, or distressed? Will I need special tests, such as imaging scans or blood tests? How often? What do I need to bring to treatment? Can I bring someone with me to keep me company? What should I do in the event of an emergency like high fever, an accident, etc? How long will each treatment take each time? How long will the entire course of treatments take? Will I get any scans done during treatments? Can I still eat anything that I want? Do I need to be concerned about being in public, work, school, or flying due to the immune system being compromised?

    After treatment
    Will I need a special diet after treatment? Are there any limits on what I can do? Am I at risk for lymphedema? What can I do to reduce my risk for lymphedema?

    What should I do if I notice swelling in my arm? What other symptoms should I watch for? What kind of exercise should I do now? What type of follow-up will I need after treatment? How often will I need to have follow-up exams, blood tests, or imaging tests? How will we know if the cancer has come back? What should I watch for? What will my options be if the cancer comes back?

    If You Have Head and Neck Cancer
    What type of head and neck cancer do you have, and where is it located? What stage is my cancer? What does that mean in my case, how serious is this? Will I have to have surgery? How long will recovery take? What are some of the side effects of this surgery? What will be my plan of treatment?

    Chemo, radiation, or both? How much? What side effects of radiation will I expect? What will you do to protect my teeth from radiation? Should my teeth be pulled now, before treatments to prevent osteoradionecrosis? What about damage to my esophagus from radiation? Will I have carotid artery damage from radiation that could lead to a mini-stroke later? How will you prevent it, or monitor it? Will I have to have a feeding tube due to swelling in my throat after surgery or from radiation? What other side effects do you normally see in head and neck cancer patients that I might expect?

    Additional Questions For Other Types of Cancer
    Will I have to have a colostomy bag after surgery? - Colon cancer Will it be permanent? Can I lead a normal life with it, if I have to have it? Can I be outside in the sun? How long should I expect to be off of work? Will I be considered disabled?

    This list is by no means all-inclusive. You should as whatever you need to know about your type of cancer, your circumstances, your lifestyle, and your ability to tolerate it. No question is a "silly or stupid" question. The doctor's job is not merely to diagnose and treat, but to also explain how he came to that conclusion, and how they plan to treat you. Do not be afraid to ask!
    If you have already been through a diagnosis and treatments, what questions would you have asked in the beginning? Please post them in the comments below to add to this list. 

  • KarenG_WN's Avatar

    KarenG_WN posted a blog post

    Depression and Cancer

    Every cancer patient says that the diagnosis was a shock. After the news settles in and we begin to process our new reality, we may begin to feel many different emotions. Feeling distressed, down, anger or weepy is totally normal when we are first diagnosed, but how long should these deep, dark feelings last? Is it normal to feel this way? Or could our feelings be signs of depression?

    What are the symptoms of depression?
    It’s normal to experience strong reactions to our diagnosis, but if our feelings are especially strong/severe and interfere with our daily life and with our family relationships, then we should share this information with our oncologist. Here are some telltale signs that you may be suffering from clinical depression.
    • Feeling sad, empty or numb almost every day • Feeling hopeless, worthless or full of guilt • Unable to concentrate or make decisions • Memory problems (not the same as chemo brain) • Loss of interest in your favorite things • Lack of motivation to perform daily activities (like not bathing or not shaving) • Fatigue, insomnia and/or loss of appetite • Sleeping during the day • Decreased sexual desire • Negative self-worth or feelings that everyone would be better off without you • Suicidal feelings • Wild mood swings/hyperactivity

    We might be in denial about being depressed. We might say, “Oh, it’s the chemo that making me feel fatigued.” We might blame our chemo for our loss of appetite. We might blame memory loss and lack of concentration on our treatments.
    Yet, deep down, we may realize that there is a difference. We may put up a positive attitude to hide our fear and loss of hope … but untreated clinical depression can lead us down a slippery slope of ever-deepening depression.
    Risk factors and causes of depression
    Obviously, the diagnosis of any serious disease may cause us to be distressed. However, some people are more likely to become clinically depressed – a serious condition that can adversely affect our treatment and outcome. Who is more likely to become depressed?
    • People who have battled depression in the past are at increased risk of suffering from another bout of clinical depression. • A family history of depression makes it more likely that we may experience depression • Lack of support from friends and/or family • Being alone with no support • Financial burdens/loss of income • The diagnosis of a particularly aggressive/less treatable type of cancer

    Interestingly enough, cancer patients in end-of-life care are not more prone to depression than patients in active treatment. About 20 percent of cancer patients experience depression with another 10 percent experiencing anxiety.

    Why some people put up a good front …
    Some patients experience depression but display an outward positive attitude. Why do cancer patients do that? Most do it to protect their spouse/family – to keep them from worrying. Some patients may be in denial about their diagnosis so they put on a happy face. Others believe that it’s necessary to have a positive attitude to have a positive outcome from their treatment. Studies show that being happy or positive don’t affect the outcome of their treatment.
    Being overly cheerful to protect our loved ones is not in the best interest of either ourselves or our loved ones. Denial can be painful and self-destructive. Loved ones should reach out to each other during cancer treatment to help and support each other.
    When to seek help if you or a loved one is depressed
    Be sure to ask your oncologist about depression. Some cancer treatment centers include a regular screening to help spot patients who are struggling with depression. But don’t wait to seek help.

    Medications. Antidepressants are miracle makers for most people. Some take up to two or more weeks to fully work. And when they begin working, patients often say that it’s like a black veil being lifted off them. • Counseling. Some patients might be reluctant to share their innermost feelings with a stranger. Psychologists, psychiatrists and licensed counselors are skilled professionals who can teach you coping strategies to help lift your mood. A psychiatrist can also prescribe an antidepressant and anti-anxiety medications. • Exercise. Yes, believe it or not, exercise helps depression. Some patients may not be physically able to walk or exercise. But if you are able, take a nice walk three times a week. I can personally vouch for this – I walked throughout my year of treatment – some days, it was only 1/4 mile (after surgery or the day after chemo), but most days, I walked 1-2 miles daily. I kept telling myself, “I’m trying to stay at least half a mile ahead of any stray cancer cells.” • Routines. Maintaining a routine helps establish good habits. You’ll feel like you’re in control again and regain confidence and self-esteem by having a routine that you can stick with.
    Don’t suffer from depression … don’t let your loved one suffer needlessly either. Recognizing depression can be tricky because some of the side effects of treatment are the same symptoms as depression. There’s no need to fall into a deep, dark abyss – get some help for yourself or your loved one. Your treatment will be easier to tolerate and endure if you’re not depressed.
    If you've been diagnosed with cancer, take a minute to join the WhatNext community and find others near you who have been in your shoes. There’s no better way to get first-hand insights into living with cancer than by connecting with others who are currently doing just that.

    Related Articles 

    Feeling Down? 12 Feelings of Depression During Cancer

    Having Late-Onset Depression and Anxiety

    Can You Describe What Anxiety Feels Like to You?

    5 Feelings of Anger When You Have Cancer - And How to Control Them

  • KarenG_WN's Avatar

    KarenG_WN posted a blog post

    For Caregivers Only - When Cancer Lasts a Long Time

    I had experience with cancer before it arrived in my marriage. Some 10 years ago my Mother made that awful phone call to me. “Can you call your brothers and sisters? It’s lung cancer and they are giving me a year”. Being tough Mom did not respect the diagnosis, it was about 15 months before she made the last call “come get me, I just want to go home”. 

    Hospice came early that night and were back at 3:00 AM, and mother passed with her dignity. All pretty much according to our common understanding of cancer. They get sick, it sucks for all concerned, but in 6 months….maybe a year, it’s over.
    Caregivers and kids move on with their lives, marked of course by the terrible sadness of what they witnessed. Some carry more of a burden, new responsibility or the pain of what cancer cost in Money. Everyone has to deal with one of cancer’s greatest thefts, Time. When Dad got Sick, and it was Cancer, he followed the script. My sister was the caregiver who sacrificed her time again, not quite so long this time. I saw the emotional price she paid and shuddered a bit…….my few hours or days helping hurt so bad. They could not have compared to hers.
    So when the day came that a single tear rolled down my wife’s cheek and the doctor said cancer, I thought about Mom and Dad. I thought about a year or so of sacrifice and how that would suck. I resolved to be strong no matter what it took. I have written blogs before on this site. About the fact that guilt is such a part of cancer, about what they don’t tell you the day your wife is diagnosed. Go back and read them, they will give you context on what I am about to talk to you about.
    Some cancers do not kill you right away. A woman who has lost her breasts will never forget her cancer, neither will her partner. That last’s a long time. But you can plan, you can look forward, you can get fat if you want to. Uterine and ovarian cancers are worse. High recurrence and dreadful treatment cycles make their own special hell for patients and partners. I keep mentioning partners. Because…when cancer strikes the whole household gets sick as well.

    After Ann’s diagnosis and all this stuff ringing in our heads, we went home and read about our own cancer. Primary Peritoneal Cancer, stage 3C. It took a couple of paragraphs to get through “poor prognosis” to finally read the words “uniformly fatal”. So you study some more, looking for hope. I was looking places my wife wasn’t, charts and graphs. I learned new terms like “disease-free progression” and “overall survival”. Mean, median, and average were all over the place. The bottom line was a graph that said they started dying at 12 to 18 months and only 20 % or so made 5 years.
    That was 5 years ago.
    Peritoneal cancer is rare. The peritoneum is a sheath of tissue that covers your major organs. It is loaded with blood supply and the cancer gets in there at a microscopic level…..and you can’t kill it. Year one was 6 months of treatment. Complete hysterectomy and chemotherapy before and after. The cancer was beaten back and stayed quiet for about 9 months. Another course of treatment, platinum therapy that killed Ann just slightly slower than it killed the cancer. We got about 6 months and then again, and again, and again. 6 or 7 lines of treatment and now the only drug that works is running out of gas.

    I can tell you that we have denied cancer in many ways over the last 5 years. Our lives became a cycle of treatment and recurrence. Each time the recovery is shorter, the treatment more difficult. But we lived well when we could and as we still can. The problem with reading that diagnosis is that there is not a patient who doesn’t start out sure it’s just not going to get them. So we did things you might not do if you were quite certain of a day and date. We lived as if she didn’t have cancer as long and as often as we could. 
    But the damn stuff just wouldn’t stop. The natural cycle of grief went out the window, locked between denial and anger, never making it to acceptance. The same fight, over and over. You see, not curable and uniformly fatal are the same. Cancer can become a horrible chronic disease. It only quits when you do.

    The list of things long-term cancer patients and caregivers lose is awful. Cancer over time takes your vitality, your sexuality, your mind, your body. The caregiver watches them go and misses all those things too. Our cancer happened when we were relatively young. I was just 56 when this started, my wife Ann just 51. We had been married more than 30 years.
    Setting all the selfish things that a man can feel, and we can have some dandies, I think I can share some thoughts about caregiving for long-term cancer patients that might help others
    Cancer has stolen a lot of the meaning from life for long-term patients, career, appearance, sexuality….gone. Cancer patients need to win once and a while. They do this by picking and winning small battles. Arguments over the mundane, setting the mailman straight about him slamming the mailbox…..and that mail order shipment is two days late! Caregivers should have a constant sore from biting their tongues. Do not say the mailman has been slamming that lid for twenty years. If she wants to make you a lunch and puts mustard on your sandwich for the first time……….tell her you wish you had them that way your whole life. You have to let them discover what they can no longer do, it’s just not important to be right anymore, about anything. Cancer has a strange effect, somehow it makes the patient smarter and the caregiver dumber.

    If you’re younger when it starts, that sex thing rears its ugly head. Fortunately, or unfortunately, caregivers of cancer patients are toxic when it comes to that. Nobody wants to look like they are snooping around for the future, and nobody wants to wait. Just give it up. If after 5 years of cancer treatment your partner has some of that gas left in the tank, respect it. As sad as it is, my wife and I made love for the last time a long time ago. There is something you never want to approach “for the last time”. I suppose it is best that way. If you’re going to wander, know getting caught is the worst betrayal of any to a long-term cancer patient. Don’t be fooled by the “go sow some wild oats” comment…..they don’t really mean it.
    So at some point your still partners, but as Ann and I discussed the other night, I have become a caregiver and she is a cancer patient. We still have good days and moments. I can still say cancer will not get her this week this month or this year. I hope to say the same thing in January. As a caregiver, I feel trapped, lonely and afraid. I dare not dream of what’s next, because it only makes what “is’ worse. The thought of a new life with someone else and all that entails…………I am eager and afraid at the same time. After 5 years all of our work benefits are gone, insurance is over $3,000.00 a month, the financial pain now coming to roost. I just don’t know how much of me will be left when this is over. I grew up running to the front and leading, some would say I am an accomplished man. Cancer has tested me as no other thing. While I refuse to let it consume all of me, it has taken a chunk, it will leave a mark, and it will one day take my wife.
    As a caregiver I don’t have the comfort of denial, I have no good place to put my anger and I cannot take it home. I fought and twisted and begged and barked and cried an ocean of tears…..and nothing changed. I am not trapped in the same cycle as Ann, I have learned to accept all of this as part of my life.

    At the end of the day, acceptance is the only true way to approach it, struggle just sets the hook of guilt and doubt deeper. Stick with your partner. Pay the price…..and find good days when you can. At some point, your long-term cancer patient will grow tired and join you in accepting the trial you have been tested by. Then and only then, does your life begin again. If you do it right you can get there with the strength your partner knew you had because all they truly want is to know everything will be OK when they are gone. I think I can give that to my Ann, as difficult as it might be…….and you can do it too.
    "Gumpus61" is a member of the WhatNext Community and caregiver for his Wife Ann. He is a contributor to the WhatNext blog page with articles that chronicle their experiences with Ann's cancer. You can drop him a message on his home page at WhatNext. 
    Related Articles 

    Caregivers - The Benefits and The Challenges

    10 Things Only Caregivers May Relate To

    15 Tips For New Caregivers

    For Husbands Only - What They Don't Tell You The Day Your Wife is Diagnosed With Cancer