The secrets of cancer survivors

Posted by on Feb 5, 2016 in Cancer Care | 43 comments

The secrets of cancer survivors

 

Disclaimer: I have never had cancer. Therefore, at the most basic level, I do not have the right to pontificate about dealing with the dread disease. Rather, I have been the servant and support of those that struggle with cancer. I thought it might be of some assistance to share my observations from the other side of the bed rail. Perhaps, their secrets of survival may help you.

  1. Cancer is a team sport; do not do this alone. Never show up to an important appointment by yourself. You are dealing with a physical impairment, as well as a complex mental challenge, at the same time that you are frightened and do not feel well. Have someone with you to listen, ask, take notes and simply carry your things. This is true not only during treatment, but at home. Accept support. Build a team. Work together to fight this awful thing.
  2. In the same way, whether you like it or not, a family goes through this together. Those that love you, also “get cancer.” Working together helps everyone deal with the affects of the disease. You are not a burden. You reap what you sow.
  3. Nonetheless, it is also important to get time for yourself. You need grounding time; quiet moments to heal. Take a deep breath; rebuild. If your family does not understand the importance of “me time,” show them this note.
  4. On the other, other hand, stay involved with day-to-day life. We are social beings. Go to weddings, picnics and holiday events. Children’s soccer games mend better than antibiotics. Yes, it can be discouraging that you are too weak to dance, and frustrating to use a wheelchair in an airport (although the airlines are great about it, just call ahead). It is hard when you are at the Thanksgiving table and cannot eat. It is much worse, even dangerous, not to show up at all.
  5. Be whinny. Really, complain a lot. Tell your doctors what is happening. Take notes. Email. Call. Will the doctor give you his cell number? Do not ignore a fever for five days, crawl into the doctor’s office, and say, “By the way, I feel terrible.” That will result in the doctor saying, “By the way, time to go to the hospital.” This is why women make better patients then men; malignant macho.
  6. Be on time for your appointments, tests and treatments. This is my own hang-up, but being on time is part of being organized and I have noted that the patients that are punctual are organized and those that are organized do better.
  7. Get in shape. Before cancer. During cancer. After cancer. The more physically active, the better your body can fight illness and the less side effects you will have. Exercise not only prevents recurrence, but allows more rapid recovery. Walk. Row. Swim. Bike. Sex. Do not be a dead blob.
  8. Taking the exercise theme a step further, I have seen that those that do “alternative exercise” seem to do better. Yoga, Tai Chi, Pilates, Jazzercise, kickboxing, Recki, and a host of others seem to have remarkable benefits. Acupuncture, acupressure, Shiatsu, Jin Shin Do and chiropractic techniques rejuvenate many of these same patients. Stretch your comfort zone.
  9. No, I do not believe in vitamins. I have never seen them help. The data is poor and I can think of no reason that a pile of chemicals thrown into a tablet in some mad scientist’s lab, can improve on the body’s natural nutritional intelligence. The body knows what it wants and expects to receive vitamins in the balanced form of food. If it tastes bad, the body does not want it. If it tastes good, your body is broadcasting a need. Eat lots of fruits, vegetables. Limited red meat. Hydrate, hydrate, hydrate, hydrate, hydrate. Did I mention the importance of hydration?
  10. Do not smoke. Stop immediately. To be clear, if you have cancer and continue to smoke you are wasting your time and money visiting a doctor. You are screwed. Stop. Patients who continue to smoke, die.
  11. Limited alcohol. Note, I did not say none…1-2 drinks a week, seems to be OK. However, the 96 year-old who consumes two scotches a day is exceedingly rare.
  12. Understand your disease and therapy. It is your body, your life; you have to be in control. I love doctors, some of my best friends are doctors, but they are only teachers and guides. If you are going to get the best care, it will be the care that you think and understand to be best. Ask questions… lots of questions … create lists. Your doctor does not mind, because it focuses the conversation.
  13. In the Internet era, it is easy to build a baseline of knowledge. However, take anything you read online with a grain of salt. It is general knowledge, not personal prescription. The Internet can be a scary place, so use it only as a place to start. Ask your doctor.
  14. Find ways to deal with the stress. Family is the start, but support groups, counseling, hobbies, short trips, reading, writing, Facebook, can help the cure. Emotional suffering can drain you and make it hard to go on. Talk to your friends, family and doctor about alternatives. The most “successful” patients achieve emotional balance.
  15. Joke. Tease. Humor is a powerful weapon against despair and depression. Watch comedies. Read funny books. Joke with your caregivers. This is no more arbitrary than oxygen.
  16. Sob. Scream. Fight. Break things. Yell. Bitch. Get really pissed off. Shout now, apologize later. Purge the pain that is trying to eat you up. Let it out. “F**k this s**t.”
  17. Did I mention laughter?
  18. Recognize that your life has changed. Permanently. Cancer is like other major transitions in life … graduation, marriage, kids. It is just one you did not want … like divorce, flood, losing your job. Work to understand the new you.
  19. Recognize that life is the same. You are still you. The things you love (or hate), your view of life, the things most important, are the same. When the chaos settles, in the moments of quiet, you are still there.
  20. I do not understand this one, but pets definitely have healing powers. I am not certain what it is about a sad-eyed dog or a purring ball of fur that gives solace. My mother had two cancers. Her cat, Linda, used to bring in dead birds when she was weak in bed. Somehow, that motivated her to get up and going again.
  21. Make sure your doctors are communicating with each other. In the best of all possible worlds, they would do this without your prodding. However, you must play secretary; bring back and forth notes and records. Confirm they are talking to each other. Like I said, this is a team sport and it is vital that your professional caregivers function as a team. The most “successful” patients track records and the interactions of everyone involved in their care.
  22. Get a second opinion. Or third. Fourth? The worst thing that can happen is that everyone will learn something. Your doctors do not mind. If they do, they probably should not be your doctors.
  23. Care about your appearance. Stay groomed and clean. Dress nicely. As they say, the cloths make the man … or woman … and a well-clothed patient is a healthy patient.
  24. Try to leave the cancer and the treatment in the doctor’s office. This is very hard to do, but as much as you can compartmentalize the disease, leave the burden somewhere else, the better balanced your life.
  25. Attack… attack … attack. Successful patients and doctors know that persistence works. Uncover every stone. Destroy every disease. Be realistic, do not ruin your life with worthless toxic therapy, but consider every chance to kill cancer.

Do not crawl into a corner and become a cancer patient. In your body, somewhere, is the growth called cancer, but that disease is not you. You are not cancer. You are a wonderful, powerful, intelligent, important, loving and magical being. Do not sit and wait for the disease to go away.              Live. Love. Life.

43 Comments

  1. Bravo! You have “nailed” it again! Despite your disclaimer, I believe you have captured the ingredients for successful survivorship that I have learned from my many years as an oncology social worker (who has never had cancer) as well.

    • Thank you very much, jcs

      • Thank you so much. Your advices are so truth. I have experienced/ learned like you said during time my husband had treatments at MD Anderson cancer center. His illness affected the whole family and needed the whole team-work to fight back! He is cancer free now.
        Your article is good not only for cancer patients but for the ones who are taking care their loved one too. The advices truly are the must- know

  2. I love this. You should post this in the lobby….or your office!

    • Thank you, jcs

  3. Overall good suggestions. I’d add that this is an emotional earthquake and that letting that happen rather than trying to suppress it is less stressful in the long run.

    #2 You reap what you sow” ???? Might want to drop this sentence. My first thought when I read this that you meant that if you can’t get your family to help you it is your fault. My family responded to my cancers by vanishing. Didn’t even hear from one sister for several years after one cancer dx. She has never acknowledged the one with no cure. After I told her about my first breast cancer one the first words out of her mouth were, “great now you have made my chances worse”. None of them could cope with this and all are “head in the sand” about it. Not my fault. They respond to anything they can’t control this way. My father was different in this respect but he has been dead for years.

    I’d add also make sure you don’t imply if you don’t do these things you will die of cancer (eg not survive – the title kind of implies that). There is that stupid ‘your attitude about cancer will affect how treatment works and if you have a good attitude you will do well’ crap that is out there and often repeated to people with cancer. Nope that has no science behind it and just guilts those having a meltdown over having cancer or who are not doing well – blames the victim for being upset and not coping perfectly. People who have had strokes, have heart disease, etc are not told they need to keep a stiff upper lip and not grieve, be angry, etc. having those diseases or otherwise they won’t do well. Why is cancer any different? People survive cancer without doing a lot of these things on this list. I think you meant survival in a way that is different than what I think of as survival (eg not dying). Maybe change the title a bit.

    You should start with your last paragraph that cancer is not who you are it is what you have. Especially for those with breast cancer this message needs repeated over and over. The BC community encourages a life long brand on your forehead that you are a BC survivor and that it is a primary part of your identity and that there is something wrong with you (a betrayal to the cause) if you do not agree with that and don’t think all that crap is relevant to you, or relevant to you anymore. Yes I know it makes good marketing sense, but it is horrible for psychological well being because they try to guilt people who don’t agree and have “put it behind them” (well in the sense you can put death of a loved one “behind you” with respect to integrating that they died into your life so that you can move on and not be forever trapped in overwhelming grief). I am thankful that the lymphoma community does not play those games and put those expectations on the folks dealing with that cluster of cancers.

    I also think that sometimes all you can do it put one foot in front of the other and not think about tomorrow. There are a lot of shoulds on that list. If someone is in a one foot in front of the other period the shoulds likely will produce anxiety, guilt, stress, etc. because if they could they would, they can’t (psychologically and at times physically) and so don’t. Being told they should do what they can’t right now is not helpful. Yes the shoulds are all good advice but when you are overwhelmed the shoulds should be prioritized and most of them dropped. Some of the shoulds are more appropriate after someone has gotten over the initial shock of the dx and are further down the path of this unwelcome journey.

    • I really appreciate the thoughts and advise in your comments. It was certainly not my goal to imply that my simple list was “life or death.” Rather it was just my humble hope to give some ideas about ways to make a terribly difficult journey, a little better. Thanks, jcs

  4. Very nice reinforcement. My wife is doing all of these (except the pets), and it is good to see it in print.

    • Thank you very much. I suspect that my mother was in fact not thrilled to wake up in bed with a smiling cat and a deceased bird. jcs

  5. Love this!

    • Thank you very much, jcs

  6. Liz comes far closer to speaking truth here than the obviously ivory tower view expressed in the article, some of which is good and some of which is downright toxic. This whole view of family assumes what family the patient has isn’t dysfunctional and lays the responsibility of working together on the patient. Bs. Much of the time family and acquaintances (friends would often be a misnomer) are more interested in making themselves feel and look good than in actually being a supportive part of “the team”. They’re the ones who didn’t disappear when hearing the news.

    My ” team” consisted of one daughter (not in good health herself) who was run ragged the entire time. Some patients aren’t fortunate enough to have even one person to be the team. Sure, I had friends who were cheerleaders and I’m grateful for them, but that’s all some are able to do and it’s all many are willing to do. You find this out when they say, “If there’s anything I can do, just let me know.” and you take them up on it.

    Best advice to my fellow cancer patients (and knowitall doctors): do the best you can with all this stuff, understand that others failures are not yours, be kind to yourself every day (and when that includes dressing for comfort instead of success in the office, dress for comfort and do it with gusto.). If you are now physically limited, don’t beat yourself up. Instead, do what you can and BELIEVE it’s enough, despite what some healthy robust fool in a white coat may tell you.

    Failing to maintain this Pharisaical list of cancer patient do’s & don’t’s will not kill you, but quilting yourself over things you were never in a position to control can (not will – just can) lead to depression and that’s not good for you.

    Sorry, doctor. Your term paper is covered in red ink. I give it a C-

    • A few years back, I would probably have responded to this article in the same way as both you and Liz did..while there are some Pollyanna ish type of statements in this article, I actually found the article uplifting, the author is making the point that we need to take charge of our situations..

      Not all of us are lucky enough to have supportive family and friends..my situation has been a mixed one..only my immediate family( husband and 2 sons) have really been there for me. I am blessed that in addition to them, I have a SMALL group of friends that have offered support and help. Since I have an incurable form of cancer, I am trying to figure out how best to live my life to the fullest. For me that is not dwelling on the bad parts of all of this, but embracing each day as it comes, some days are not so good, but there is at least one thing about each day that is good, no matter how small. I have come to realize that it is what it is, but ultimately life is what we make it.

      • Deb – you said, “I actually found the article uplifting, the author is making the point that we need to take charge of our situations..” well then that is the point that needed to be made directly.

        Maybe the preamble should be:
        With cancer there are many things you have no control over. Take charge of what you can. Do what you can. And then don’t beat yourself up for the rest of it. Here are things you might be able to do that some have found has helped them (your mileage may vary), but don’t sweat it if there are things on this list you can’t or don’t want to do, or aren’t possible.

        And then drop the Pollyanna statements. That tends to make people feel worse if they can’t pull it off or have to spend too much time/effort trying to pull it off. They also piss off people where the entire “what doesn’t kill us makes us stronger/builds character, look on the bright side, you are luckier than someone who is worse off than you…” rubs them the wrong way. Because when life sucks it sucks. Incidentally that someone else’s life sucks more doesn’t make yours suck any less. People should be allowed to have validation that life sucks. Pollyanna statements do the opposite of that. Pollyanna statements serve as a put down, an invalidation and don’t allow people to feel like it is OK to go through the entire range of emotions you go through when dealing with the cancer gig.

        Yes if you can, for example, bring yourself to exercise while throwing up due to poorly controlled nausea or being out of breath due to chemo effects, or whatever that sapped all your energy, likely eventually you will feel somewhat better in the long run than if you didn’t. In the short run likely you will feel better doing the couch potato thing. Sometimes all you can do it put one foot in front of the other and so have to focus on the short term. And that is OK. There is a place for pity parties. Provided you don’t get stuck wallowing in one, they also do some good.

        People can not be strong all the time. And it is counter productive to try to be strong all the time. You will fail at trying to be strong all the time so why even set yourself for failure and then in a weak moment blame yourself (because that is what the Pollyanna approach does – makes it your fault for not doing the Pollyanna thing if you feel like crap and can’t be happy about it, look on the bright side, etc) for not being able to pull it off? Cancer sucks. I have the right to not look on the bright side all the time. It can take way the he$$ too much energy to try to suppress “not bright side looking” feelings so I can play a good little Pollyanna (yes I am being sarcastic).

        We don’t ask that of people who are grieving for a dead loved one, had a stroke, etc. why do we ask that of cancer patients? Frankly it is a reason for justifiable homicide asking serious ill people to have to fake being happy, cheerful, turn lemons into lemonade, etc. And if they can’t eventually figure out how to deal with it, maybe we should look for causes such as depression rather than character flaws and coping flaws that leave the onus on them to not only get through this but to do it in one prescribed way.

        #5 – Be whinny. Seriously? You want us to get fired by our oncologist? My first one could not handle the negative emotions associate with cancer (later I learned her father had died of cancer and my guess is that we triggered her issues when we weren’t model patients). You might be able to handle that, but not ONE oncologist I have encountered across three insurances (thus many changes) for my current one, nor the ones I had for my previous ones, could have handled that. I had to learn to suppress my anxiety, worry, anger, fears, etc and act like this is just a skinned knee. Considering that being stressed out gives people very little tolerance for screw ups (and there are plenty of screw-ups when your treatment is in a teaching setting, even when it is not) and often a short fuse, life is hard enough as it is and it seriously tough to act like a model patient. Add whining to failing at being a model patient on occasion (one spectacular one comes to mind – oncologist forgot to move my chemo apt as she went out of town, I showed up, waited around for nearly 6 hours hours, had to be pushy to find out what the heck was going on(when the truth came out – they had just said they had paged her no idea why she hadn’t responded and then didn’t look any further) and when I burst into tears and said, “Why the F didn’t someone call and cancel my apt, tell me this when I checked in… I better not be charged for anything done today as this was your screwup”. I was told if I couldn’t get a grip I’d be escorted out by security for upsetting the staff and other patients. Really? We are just supposed to take this kind of stuff in good humor. If whining had been added to my list of transgressions I wouldn’t have had an oncologist.

        And being given their cell # – that is something that never ever has had happen. Ever. If I were to ask it would be overstepping boundaries with every MD I know, oncologist or not. Might be what you do and if so great. That is not good general advice though. Oncs I have run into would see that as being pushy and they don’t like pushy. Plus they do deserve a break from the office. I presume that this is why they give out an on call number. After all they have families, a life – or they should so they don’t burn out.

        I realize your point is let them know about important things that are happening before it potentially blows up in your face (like a fever when your WBC is 1.0). That makes sense but jokingly calling it whining isn’t helpful as some will take you literally and then the sky may fall on their heads.

        OK done with my rant. Now on to something more positive.

        The other thing is the wording of good advice. For example:
        1) “Never show up at an appointment alone”. OK so now I am being stupid and breaking all the rules because I am showing up alone? Instead here is a suggestion for one way to word it… “Many people find it helpful to bring someone to appointments with them and this is why…”. That does not come across as a command that if you break it you won’t survive cancer, are being an idiot and by the way what is wrong with you that are not following what I am telling you is best for you?…

        Sorry. The ideas are good ones but the delivery of the message needs improvement. Please revise and resubmit.

        • Liz, as always, I am honored and greatly appreciative, for the work, wisdom and insight of your comments. I will absolutely review and revise. In the mean time I do, specifically, tell all my patients to be “whinny.” I beg them to call. Oh, and they all get my cell number and email.
          jcs

          • nice.

          • Thanks for the complements to my rather long posts, some parts of which were critical. I figure you are also teaching med students and likely lift some ideas, quotes, etc off this board so I might as well try to be detailed about what I say so maybe once in a while it might give docs in training some insight into something they may not have experienced first hand.

            You are rare in giving out your number, and I do understand that telling people it is OK to whine (and I presume complain) encourages those who are hesitant to “bother the doctor” with something that might turn out to be “trivial”, to instead speak up. Likely when you use that word, with it comes an explanation. For the rest of us, some of whom are dealing with oncs with a different temperament, this needs worded differently (as I already pointed out).

      • Thanks. It is not really possible to reduce such a complex personal journey to a simple list. And, in the end, we all go through life by our own path. I guess you are right, that if we can find some good in each day, things may be a little better. Hang in there. jcs

      • So true, Deb. Thanks for writing it. When I am at my best, I remember this.

    • How dare you attack this doctor for giving a list of things to help people. Maybe you didn’t have help because you didn’t have friends to begin with? And the term dress for comfort that you say you suggest…. I have seen patients who come into my office actually try to look good and when I ask them why they are so dressed up they say….I feel better when I dress up. It helps me. Dr Salwitz has put a list together for people who want to attack their illness. Not someone who wants to role over and die. Your response to his article is very negative and I believe you are the depressed miserable person

      • Instead of trashing someone, engaging in name calling, negatively judging them, telling them how they feel and how their family feels about them, engaging in unprofessional behavior (you said, “my office” so I am assuming that you work in the medical field – maybe I am wrong, I sure hope so),etc., perhaps you might want to consider how you come across to others.

        You could have instead stated that you appreciated the list, found it helpful, that some of your patients actually feel better when all dressed up, that certainly many of your patients would find this list useful even if you don’t.

        I can tell you for sure, the outburst you just had would be a deal killer for me to ever have you as a physician or recommend you as a medical provider. I’d be walking on egg shells around you afraid I’d trigger an outburst aimed at me if on a bad day of my own I said something that you took exception to. That is something I don’t need when in the middle of a cancer crisis. I hope the explanation is that you are just having a bad day and that you don’t normally so totally attempt to destroy someone you disagree with.

        • In all fairness to Ann, you do sound like a bitter and extremely angry person…a cancer diagnosis is difficult, but so much anger is certainly not helpful either…

          • Nor healthy…

          • I think you are telling the wrong person they are angry and bitter. Penny is the one who sounds unhappy and who made the post that Ann was responding to (follow the left indents up to see specifically who hit reply to whom).

            In this thread first I responded to Deb and then I responded to Ann for trashing Penny.

            I was appalled at Ann’s post to Penny and replied to Ann – not in defense of the person (Penny) who originally posted – rather I was responding to the incredible inappropriateness of Ann’s post as a response to anyone, regard less of who they were.

            This thread is long and I think you thought she was responding to me. If you follow the lines up you see she hit reply to Penny’s post, not mine; that I did not express anger and bitterness about anything.

          • Sorry if I misspoke…it is hard to see exactly who you are responding to here..my point is that while anger can be helpful in small doses, dwelling on it really serves us no purpose except to add to our stress levels, it becomes self defeating. As cancer patients, more stress, inward or outward is something we just do not need…

          • She usually sounds this way. Anger can be helpful. It motivated me to think and find a decent oncologist. Actually, I didn’t find a decent oncologist, I found a genius radiology oncologist. All of my scans are clear of a rare nose/mouth cancer. My face actually healed very well from the surgery. My intestines are greatly swelled from radiation and I carry extra fat on my tummy that was by a 20 lb weight gain ordered by 2 different types of oncology specialists. I look like a street person with a clean body and clothes. I just can’t be the only cancer patient. that has trouble finding clothes that fit, and can carry a dog biscuit. Oh well. Almost everyone on this site sounds angry

          • meyati – who “she”? This post has too many she’s to know who you are talking about – the original poster Penny or Ann who trashed Penny- Ann sounded the like most angry on this thread or me?

          • Deb – yeah I know. When too many people reply to replies then we get too many left indents, and then the posts get really skinny like this one which doesn’t help. Too bad no edit after the fact function so we can fix mistakes (grin)

  7. I have been on this journey for a short time, but I enjoyed the article and found it quite uplifting. I am choosing to follow most of the suggestions. I am blessed that I have lots of people praying for me, sending me cards, and bringing meals, etc. But it’s only been 4 months, so I know it will dwindle as time goes by. My husband is 100% on his care of me, which is beyond anything I could imagine. We are just taking one day at a time and enjoying every tiny blessing.

    • Sue, I missed the importance of spirituality. You are so right. While I myself am not religious, I am spiritual and I have seen that those patients who understand or feel their place in the world, in the universe, are more at peace and may do better in tough times. Prayer and mediatation, together with the love of friends and family can be vital to healing. Thanks for reminding me. jcs

  8. I wish more cancer patients could see this note. It is absolutely helpful!

    • Very much appreciated, Hang in there. jcs

  9. I found this very important. I had a month to get ready for nose/mouth radiation. I started doing the jaw and lip exercises, before radiation. I have had minimal ear problems that are caused by radiation. I tried the foods listed on my diet sheet, so I knew what I could eat. I began using the flouride gels for my teeth. My oncology office called my dentist to check on my teeth. You are wrong about vitamins, as I’ve had Vitamin B 6 deficiencies twice and a B 12 once. A regular vitamin pill doesn’t work for me. B Complex doesn’t work for me. All of the vitamin troubles were before cancer. Labs showed that I was in the early stages of pernicious anemia, when I was getting ready for treatment. I added Folic Acid to my regimen, and I pulled myself into normal labs-no longer anemic- with high radiation treatment.

    All of the above is called, expecting to live a quality life. You are spot on with other aspects. What helps me is to be a Whatnext.com member and talk to other cancer patients. New members join, and some say, “My doctor said that I’ll be dead soon.” We write back that nobody knows when we will die. Some post that they were told that 6 years ago or whatever. So, my main advice is to practice the exercises that you need to do during and after treatment. I think that it helped to get improved circulation in the radiattion area.

    And thank you for your help.

  10. Thank you, Dr. S. Your writing feels sincere. I very much appreciate your perspective, and that you take the time to share it. The point about physicians communicating with one another is important. I wish it was easier to keep up with every patient’s other doctors regularly and promptly, but our system prioritizes other activities. Thank you for caring so deeply about your patients and our profession.

    • I find that most doctors are hampered by these communication problems. As you say, the current system priortizes other activities, and we all know that there are only 24 hours in a day. The network that I’m in is trying to expand all facilities without expanding the staff. A person can only do so much. My big problem is that different people keep changing the message or the doctors’ orders.

      When I was admitted to the surgery floor with Pastuerella multicido, the doctor specifically told an old nurse to enter that I needed a script of Augmentin when released. The nurse wrote it up in the EHR that my PCP had already wrote the script. I begged the hospitalist to make a script, because I had only 2 low dose Augmentin pills at home. I was told that I was old, I was high on opiods, I was sick, disoriented from being in the hospital-Go home. I begged that somebody-anybody call my admitting PCP

      Nobody believed that I was discharged w/o Augmentin, and they were also rude. It took 3 days before I could get in contact with my PCP. I obviously survived, but it took a lot out of my PCP emotionally. I think this sums up the current problems.

  11. Well you can all throw the book at me! I was 67, had smoked for 50 years when a lung nodule was found incidentally when I had a CT for an unrelated matter. I had an open thoracotomy, no further treatment. I stopped for a while but I was miserable, smoking was part of my life so I carried on, that was five years ago and fine so far. I simply took the view I would get better or I wouldn’t and, since I am inclined to believe we are all date stamped, I continued my life as always. I get sick of smoking beng blamed for everything, most smokers don’t get cancer and many who gave up decades ago do, even never smokers. I buried my young cousin on Friday, she was 44 and died from secondary breast cancer, such a waste she was a dedicated nurse who loved her job. My surgeon is fine of course he strongly advised me to stop but he accepts as an adult I am able to make my own decision and doesn’t harass me about it. I think cancer is far more complicated than we know and in my case I think it was triggered by the sudden accidental death of my husband. My immune system collapsed for months with the trauma and shock. I have seen that often after a traumatic experience, two friends whose only child killed herself both developed cancer within the year, her dad survived but her mum died last year from colon cancer, she was a never smoker. Sorry this is s long but some of the article seemed to imply that if we did everything you consider right we would survive and I think that makes some people feel guilty. I hate the way smokers beat themselves up about it as if they didn’t have enough to worry about.

  12. I liked the advice! After 11 years of remission, my breast cancer came back as a bone metastasis, October 2015. Ten does of radiation to my cervical spine (aimed at hairline fractures) in December made me remember again how long it took to get over 33 ( or was it 35?) radiation treatments when I was a mere 62! I’ve been wearing a cervical collar, 24/7 since November fourth. Prayer support fr friends and churches around the country remind me that God listens and does answer prayers. My job is to be faithful, take my daily Fsmara pill, find a medical oncologist to give me a monthly Xgeva shot, and we are back, traveling in our motorhome for the next four months. I am blessed. I need to remember to pray for all cancer patients, and that if possible, all of us find cancer support groups that listen and help us make the tough decisions. I will forever be indebted to GILDA’S CLUB, DESERT CITIES, CA for the support, encouragement and friendships while we were full-time RVers. We also volunteer with the SOWER Christian RV Ministry. Paying it Forward has been our motto.

    Elizabeth
    Www. yourexitstrategy.org

    • What a nice note. Thank you, Elizabeth, for your gentle words.

  13. Wow, Ann! You could be making big bucks, hon, just using your amazing psychic power to discern and dissect the life, personality, and outcome of a patient having read one comment they wrote. <–Just to be clear, this is not meant to be taken seriously.

    Actually, I did NOT say cancer patients shouldn't "dress up" to go see their onc. I said the patient should not feel obligated by what was written in the original article to dress up even when they simply cannot. Some days (not all of them,) SOME of us have been too sick, in too much pain, and simply too weak to do more than shower and pull on clean warm ups. If that statement brings out your broom and pitchfork, that's on you. I certainly did not state it as well, but Liz has covered all the points I was trying to make.

    And yes, hon, I do have friends. Precious souls who have been praying for me and with me every day of this journey with two different types of NHL at once. They are also rejoicing with me that the aggressive one is now in remission and the indolent one is under better control than ever. This doesn't mean they are in a position to drive the hundreds of miles they'd need to drive to be part of every day and "my team". And neither you nor this article is going to make me feel like a failure as a patient because I'm living here rather than there so that they can. I do hope no other patients read it and take it as I did. Friends do stuff for ya. Mere acquaintances often make noises they should not because they don't mean it. As for family? Well, I'm a widow with no sibs and only two kids. My son can't be here and I understand that. Again, the way the article was written implies the patient without a family to rally round in support has failed. Perhaps, as you so compassionately suggest, we should roll over and die without it? I believe not.

    Tl;dr: The list would be far more helpful as suggestions for some, than as must do's for all.

  14. As a survivor of head & neck cancer, and also currently a chapter facilitator for a national support organization, your thoughts and insights as a physician are incredibly valuable. I’ve found myself offering some of the same to my group – the most truthful one being that they should never become the disease. Thanks for your good words!

  15. Wow, a little less hostility seems to be in order here.

  16. Thank you for caring about people who have or who have had cancer. The oncologists, surgeon, and radiation oncologists, and all their staffs have been the most kind, helpful and encouraging. It would have been so much worse if they had not been so kind and thoughtful.

    I just wish someone would come up with a way to help those of us without a support system. My family did not have a clue and none of them volunteered to help. I got one son to take me to the hospital the day of surgery and the other one to go with me on my first visit to the oncologist. That was it. It was the most horrible time of my life. There was a nurse navigator. When I told the surgeon I had heard there was one, but had not been contacted I got a phone call. She showed up at the imaging center right before the wires were placed in my breast. After we received the pathology report I contacted her and she attempted to get answers to my questions. She wound up getting me an invitation from the pathologist to meet with him. That was helpful, but much less than what some people received. I also went to the breast cancer support meetings for over two years and made not a single friend and felt that some were hostile towards me.

    I appreciate what you do, but please be on the lookout for people like me who are always by themselves. There needs to be something for us, too.

    • I hear you. I don’t understand what goes on. I took my grandson with me to my second visit. I didn’t like the oncologist, etc. I wanted to see what my all male family thought. The cancer tumors were on my face, so it wasn’t as though I had to undress. The staff called me a dirty pervert. I told them to complain to God, because I was given all males.

      The nurse navigator refused to order lab work for me. She made 3 appointments for me on the same hour, on the same day, and the doctors were in different parts of the city. They said that the NN had to reschedule, because she made them. I had to go to 2 of the offices and reschedule. I had stitches all over my face, and my nose was sideway. My appearance must have scared the desk staff.

      Support groups- Ha, So you really don’t need to ask, and I don’t have to tell you.

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