Support for LateToSchool

[northeastmom]

<p>Our experience with hospice care was fair. We found them excellent for pain control for my FIL. They left us with plenty of medication so that he would definitely be comfortable. They were all kind and patient people.
The problems I found were:
1- One could not have hospice service while still being treated by a medical doctor. My FIL went on and off of Hospice care for this reason.</p>

<p>2- We really needed physical help for the last 2 weeks. One family could not meet his needs alone (we were out of town when he quickly declined). We turned around immediately, but 2 untrained family members were not enough. After we returned home there were 4 adults taking turns (one had worked as a nurses aide so she had some experience), but Hospice only offered a quick visit when we needed more. They were not there when with anyone when we needed physical help in the home. They did put us in touch with a nurses aide who was wonderful, and we hired her ASAP (our personal funds, this was not covered by insurance), and she was not part of the hospice program. Hospice did provide better help when my FIL was in better shape in terms of dealing with his living situation and emotions, through a social worker who visited once or twice per week (don’t recall frequency of visits). The social worker visits were nice, but he required more nursing, and a round the clock nurse’s aid for the last 1-2 weeks.</p>

<p>momof2inca, You make an excellent point, and that is what needs to be focused on right now!</p>

[latetoschool]

<p>Ouch, this has taken a bit of a dark, ominous turn, far darker than I would like.</p>

<p>I have read a LOT of material in the past several months as you might imagine. Like it or not, believe it or not, there is a certain segment of caregivers, typically serving in the role of hospice employee, or hospital staff person, or spouse or other family caregiver, who I have seen time and time again complain when a late-stage cancer patient will not simply give in to their fate and conveniently die. I have even seen posts in forums (oncologist sponsored) where the caregiver - again, typically a contributor from hospice or a nurse and somewhat less often an immediate family member - complain that the cancer patient didn’t accept their fate and die, and that by continuing to fight to live, the cancer patient just made things harder on everyone else, and themselves. I have read first hand reports of these complaints - apparently you’re just supposed to cave on schedule to this horrible disease, is the thinking in some segments. But I have never seen an actual doctor express such sentiments until now, and that is what prompted my post. I probably should not have written the post in the first place. </p>

<p>Thanks to everyone who posted in response though. I am sure the information is helpful to someone. </p>

<p>Momof2inca, thank you for posting that. I think I may have seen that abstract before, but for some reason had it in my mind that it addressed limited disease only, which offers a far better prognosis and that those percentages more appropriately match. But I am not sure - I have read too many things recently, so, I sent a PM to the person who is helping me get complete articles. BUT - even if it does address limited disease only, it is still a very, very encouraging study, and, at least it is a post in a far more positive direction, for which I am grateful!</p>

<p>dmd77, I have not been able to find any survivors who have my exact experience. Having said that, I believe they must exist. But the longest survivor I have been able to conclusively document (including verifying the original biopsy) is 20 years. He died of a relapse, but, 20 years later, in his 60’s. Difference is he achieved remission or at least no evidence of disease following first line treatment.</p>

<p>UCDAlum82, thank you for your thoughts; I feel the totally feel the ouch on the “sticky” part. Deeply. And you are in my thoughts daily.</p>

[padad]

<p>I am sure all the hospice talks are well meaning but this is surely not the thread for it. </p>

<p>LTS, What the onc probably meant was that many weaker cancer patients will succumb to end organ failure before the ravage of wasting sets in and becomes evident. What he fails to understand it that the phisical change, while sad, is neither horrible nor ugly to the love ones.</p>

[momof2inca]

<p>You are welcome, LTS. I’m curious to learn what “good performance status” means in this particular context, since it seems to be a favorable prognostic parameter. Is it perhaps what your physicians keep commenting on (i.e. that all other indicators of your health are excellent?) If so, more good news for you.</p>

[vicariousparent]

<p>I have good friends (husband & wife both doctors) whose father was placed in hospice care after weeks in the hospital, and years of battling emphysema that needed him to be on oxygen. This was around Christmas time and the family cancelled an important vacation to be with her father when he died. Didn’t happen. This was Christmas of 06! He was still around in Christmas of 07, joking about how he needed a new suit to be buried in, the old one wouldn’t do any more! Of course, emphysema is not small cell cancer, but the point is, all the doctors were expecting the patient to die in a matter of days. </p>

<p>All these survival statistics are useful to have for general information but individuals are unique and actually so are their cancers. My humble suggestion: listen to your own body.</p>

[teriwtt]

<p>

By that logic, there is absolutely no point wasting energy having a positive attitude, keeping oneself in shape, fighting the disease, etc. The outcome is inevitable because cancer is going to do what cancer is going to do, seems to be his attitude.

</p>

<p>I failed to mention in my previous post that I’ve also worked in a hospital, and have seen many people with temporary setbacks with very positive attitudes. There’s a huge difference between someone who has all their wits about them, is actively and aggressively is participating in their treatment, and someone who can’t swallow anymore, whose kidneys are shutting down, there’s heart failure, etc. Those who have a positive attitude and are healthy are encouraged to fight, not to give up. I’ve never, ever felt someone was inconveniencing me because they wouldn’t just hurry up and ‘accept their fate’. If someone specifically articulates that in any way, I’d have them thrown out. Cancer is NOT going to do what cancer is going to do because obviously there are more people than we can ever imagine who have turned any ‘statistics’ on their head. If the fight were as easy as just complying with medications and treatments, then many more people would ‘win’; but because it requires a multi-sided approach, every case is different because how every person approaches their cancer is different. It’s not a cookie cutter approach, and thank God it isn’t because if it was, we’d be out of luck if we had the wrong cookie cutter for our particular situation. </p>

<p>I also wanted to add that it’s NEVER wasting energy when one has a positive attitude, keeps one’s self in shape, and fights the disease. I’ve never found anyone who has said doing those things actually shortens one’s life span. We always assume they increase our life span, as does any healthy life style change. What is a waste is someone, diagnosed with a chronic illness, who all of a sudden chooses to drive through McDonald’s everyday, isolate themselves from anyone who can offer support, and wallow in self pity to the point of being non-functioning. Perhaps I shouldn’t say waste, because it’s not really my place to judge what someone else does with their life, and using the word waste implies judgement.</p>

<p>I guess I was initially trying to offer a perspective of where that oncologist was coming from - again, I question his experience to talk about a phase of life that he may not necessarily have as much experience with as hospice workers. And I think it’s a disservice to make such broad generalizations.</p>

[calmom]

<p>LTS, I sent you another study. It is a statistical analysis of survival rates for 763 patients enrolled in clinical trials from 1982-1993, published in 2000. There is a very small <em>cure</em> rate – people whose cancer went into remission for a long time and never came back. Survival rate among the reported cases was up to 14 years, and there were some who were still alive as of the time of the completion of the study. The most important factors for survival were age, gender, and [Karnofsky</a> Performance Status Scale](<a href=“http://www.hospicepatients.org/karnofsky.html]Karnofsky”>http://www.hospicepatients.org/karnofsky.html) – when you look at the study you will see that the vast majority of patients were much older and sicker than you.</p>

<p>Nothing is prolonged or “gruesome” until you feel that way. If you take a turn for the worse and find yourself bedridden and in pain… then there may come a time that you decide to give up on aggressive methods. This is a decision that you should think about in advance and discuss with your daughter, making sure that she has the proper legal authority to make decisions to make appropriate decisions. But if you look at the Karnofsky chart, that is for when you are at about 20%. As long as you are getting up in the morning and getting dressed for work… it’s not yet relevant to you. </p>

<p>If you look at the Karnofsky link, I think it is obvious that “gruesome” does not apply to women who go out skulling on weekends with their daughters, or who choose to walk rather than ride taxis while traipsing around town. You clearly are now functioning at the very top of the scale. 100% on your good days, 80% on the worst. You are a lot “healthier” than I am, actually - I’m lucky if I fit a 20 minute walk into my day. </p>

<p>As long as you are in that top band of the Karnofsky scale, “Able to carry on normal activity and to work” – I think that you are in the “survivors” column, even though it hasn’t been long enough to qualify as “long term”. </p>

<p>Mythmom is right. Live for the present and enjoy your current good health, your work, your time for the family. And pay attention to your current status.</p>

[sax]

<p>My very wise and beloved Reverend has been with many, many of his long term friends and parishoners in their final days. He shared with me that all of those people have dealt with death in the same manner that they have lived their lives. For whatever reason I have felt a great comfort in those words and have thought about that discussion many times over the years. Seems to me, LTS, that you are too busy with the business of beating this beast to worry about what some Dr. has to say. Stay the course, LTS. Allow the good things to envelop you and get back to keeping the bad thoughts from getting anywhere near you. You are a positive life force. All your life you have beaten the odds. Stay the course.</p>

[momkaes]

<p>LTS Ive followed your story since the begining but never shared my experience because I didnt want to interfere with such a positive attitude. Now that Hospice has been brought up I felt a need to reply. It was never our impression that Hospice provided full time care in the home. It was moral support for the family and pain care, oxygen, and medical supplies for the patient. Also we were very aware that it was only for after the patient decided to end medical care, not while still in treatment. One of the most meaningful things we were told was offered by a nurse shotly after diagnosis. My brother wondered how he would know when to refuse any more treatment. This nurse looked him right in the eyes and said you will know. Ultimately, he did know after he fought as hard as he possibly could. This was a young healthy man in his fourties with a daughter just finishing high school. The end of my brothers life was peaceful and pain free and not the struggle as some people here have quoted. Please let me say, my brothers care at the end was a gift to me I loved him very much and would not trade the experience for anything. Dont give up you are such an insperation. Dont believe time estimates they are never right.Prayers to you.</p>

[epistrophy]

<p>

Mythmom is right. Live for the present and enjoy your current good health, your work, your time for the family. And pay attention to your current status.

</p>

<p>I third that.</p>

<hr>

<p>and now for another lung cancer survivor (one who has written a book about it)</p>

<p>

How to Survive Lung Cancer</p>

<p>by Michael Lloyd</p>

<p>I am very lucky to have survived such a severe case of lung cancer but it was not by accident. With no specific roadmap to follow, I had to search through a great deal of material and pull from a variety of sources to assimilate the knowledge and develop the skills that I needed in order to survive.</p>

<p>As I overcame the illness and returned to the cancer center for checkups, I would speak to other patients and family members, explaining what I did in addition to the chemotherapy and radiation. I cannot begin to express the look in their eyes as they hung on every word. They were starving for direction and extremely grateful to receive advice from a survivor.</p>

<p>It was through these experiences that I realized the magnitude of what I had to offer, not just in the way of hope, but with specific techniques and exercises to help others heal. So I decided to write The guide I wish I’d had when I was learning How to Survive Lung Cancer ~ A Practical 12-Step Plan. </p>

<p>I hope this book will inspire others to take a proactive approach in formulating their own magical combination that will help to restore their mind, body and spirit to an optimum state of health.

</p>

<p>[How</a> to Survive Lung Cancer - About the Author](<a href=“http://www.lymeart.com/slc/about_the_author.html]How”>http://www.lymeart.com/slc/about_the_author.html)</p>

<p>[How</a> to Survive Lung Cancer](<a href=“http://www.lymeart.com/slc/index.html]How”>http://www.lymeart.com/slc/index.html)</p>

<p>[Amazon.com:</a> How to Survive Lung Cancer - A Practical 12-Step Plan: Michael Lloyd: Books](<a href=“http://www.amazon.com/How-Survive-Lung-Cancer-Practical/dp/1435704711/ref=sr_1_1?ie=UTF8&s=books&qid=1207186360&sr=1-1]Amazon.com:”>http://www.amazon.com/How-Survive-Lung-Cancer-Practical/dp/1435704711/ref=sr_1_1?ie=UTF8&s=books&qid=1207186360&sr=1-1)</p>

[busyparent]

<p>One last comment on hospice and then I will drop it–</p>

<p>the whole point of hospice is to neither hasten nor delay death but to provide supportive/comfort measures to people and their families and allow them to have as many good days as possible until their last day. </p>

<p>I totally agree with the above comment that people die the way they live. My experience shows that folks who were nice and easy going during life are easy going with the caregivers and med regimen. Those folks who were difficult/angry/complaining individuals in life are difficult and complain about their families who don’t visit often enough, our service, the hospital bed, the home health aide --they find something.</p>

<p>Unfortunately the hospice medicare bill does not provide for round the clock in home nursing care at the end of life so people do have to privately hire. This is sad because it would be nice if family members could be only family members rather than caregivers at end of life but hopefully we have counselled along the way and taught family members how to care for a loved one and many people are greatly satisfied that they were able to keep their loved one at home.</p>

<p>It is a great honor to work with hospice and be allowed to help a family at such a difficult time. We routinely attend our patients funeral services, hold memorial services and have a bulletin board with obits.</p>

[NYMomof2]

<p>LTS, I think you are giving far too much power to that oncologist. Having gone to Harvard and Princeton does not make one infallible. I once worked with a famous professor on the faculty of one of HYP who had tantrums and, literally, kicked the furniture when he did not get his way. And he was not all that smart, either, despite having gone to top schools. You are the smartest person I “know,” and I admire your strength of character. And, reading today that you even refuse to take advantage of my own personal favorite worksaving invention, the wheel, my awe increases. Picturing you striding along on your high heels, a heavy case in each hand, I see someone who controls quite a bit of her own reality. You have always faced the range of possibilities of your situation, but that range includes some very positive outcomes, and you are doing everything possible to tilt the balance toward them. Don’t let some man with a few degrees, making a comment that is inconsistent with what we all believe to be true, shake your certainty about your chosen course of action.</p>

[busyparent]

<p>" The end of my brothers life was peaceful and pain free and not the struggle as some people here have quoted. Please let me say, my brothers care at the end was a gift to me I loved him very much and would not trade the experience for anything. "</p>

<p>thank you this is exactly what I was trying to convey…</p>

[ADad]

<p>Survivor Stories–Pancreatic Cancer</p>

<p>

Patterns of Hope: The Survivor Stories
Thoughts on Families who Have Lived Long-term with Pancreatic Cancer</p>

<p>After hearing that someone you care about has pancreatic cancer, one of the first things you confront is the reality of statistics. But there are long-term survivors. They do exist - and often thrive. And their stories are important beacons of hope for others confronting this serious foe.</p>

<p>In her book, There’s No Place Like Hope, “terminal” cancer survivor Vickie Girard observes, “I have often thought of cancer as the schoolyard bully … the mere thought of him can send people running. But all it takes to diminish his power is for a couple of people to stand up to him. That’s what a cancer success story does - it stares down the bully.”</p>

<p>…</p>

<p>One of the many commonalities among the initial survivor families is a conviction, almost from the beginning, that they were going to beat the odds.</p>

<p>…</p>

<p>We know what clinical factors make pancreatic cancer survival more likely: overall age and good health, early diagnosis, tumor location, eligibility for surgery, world-class hospitals, skilled doctors. Most (but not all) of our initial interviewees had many (but not all) of those things going for them. But so do many people who still aren’t so lucky. We wondered whether there were also other, non-medical situations or attributes that these long-term survivors would turn out to have in common.</p>

<p>There were. And they’re not news bulletins. But they do leap off the page as you read these stories. **Positivity. Indomitability. Spirituality. Appreciation of the little things. A craving for information. Continuing things they love doing. Not taking no for an answer. Strong, devoted and ever-present caregivers. Hope in the face of (what often seems) no hope. And humor, always humor. ** [emphasis supplied] One survivor has had this magnet on his refrigerator since the very beginning: I plan to live forever. So far, so good.</p>

<p>And even now - when it seems that the hard part may be over, and the coast clear:</p>

<pre><code>* All have an impassioned, downright mission-driven determination to share their experience with people who are taking this journey after them. To continue helping others.

• And - they share a certain thankfulness for the experience they’ve been through. As one wife and caregiver put it, “there was a special sweetness and richness about that time, as we were forced to focus only on each other for a change, and to talk and reflect about what really mattered.”

</code></pre>

<p>[Pancreatic</a> Cancer: Survivor Stories](<a href=“http://www.pancreatica.org/survivor_stories.html]Pancreatic”>http://www.pancreatica.org/survivor_stories.html)</p>

<p>[Amazon.com:</a> There’s No Place Like Hope: A Guide to Beating Cancer in Mind-Sized Bites : A Book of Hope, Help, and Inspiration for Cancer Patients and Their Families: Vickie Girard: Books](<a href=“http://www.amazon.com/Theres-Place-Like-Hope-Inspiration/dp/1888387416/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1207191229&sr=8-1]Amazon.com:”>http://www.amazon.com/Theres-Place-Like-Hope-Inspiration/dp/1888387416/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1207191229&sr=8-1)</p>

<hr>

[mythmom]

<p>LTS: Fight. And keep fighting. No one here wants you to give in or give up. And we believe in you.</p>

[keymom]

<p>You are fighting, you are surviving, and you are vibrant and living.
One day at a time, tell yourself this everyday.<br>
You are hopeful and it is all about hope.
Who gives a damn about statistics and graphs and if there is any single person alive in your situation and how long they have been alive.
You are fighting, you are surviving and you are vibrant and living.
It is going to stay that way.</p>

[tobia_e]

<p>LTS,
I’ve had so many professors (including one with a PhD in Stats!) tell me that statistics DO NOT apply to the individual–in quantitative research, we look at things on the level of GROUP differences only. Your life, on the other hand, is very much qualitative and very much unique. <em>hugs</em> :)</p>

[SBmom]

<p>Bravo keymon, standing O!</p>

[3Ks]

<p>LateToSchool,</p>

<p>With regards to statistics and prognosis, have you read Stephen Jay Gould’s essay “The Median Isn’t the Message”? Randy Pausch’s website has the essay linked with permission: <a href=“http://download.srv.cs.cmu.edu/~pausch/news/medianNotMessage.html[/url]”>http://download.srv.cs.cmu.edu/~pausch/news/medianNotMessage.html&lt;/a&gt;. Steven Dunn’s prefatory note sums it up well: </p>

<p>

As far as I’m concerned, Gould’s The Median Isn’t the Message is the wisest, most humane thing ever written about cancer and statistics. It is the antidote both to those who say that, “the statistics don’t matter,” and to those who have the unfortunate habit of pronouncing death sentences on patients who face a difficult prognosis. Anyone who researches the medical literature will confront the statistics for their disease. Anyone who reads this will be armed with reason and with hope. The Median Isn’t the Message is reproduced here by permission of the author.

</p>

<p>I think it is timely, and I thought I’d post in the event you may have missed it.</p>

<p>May it increase your healing thoughts and your fighting determination, 3Ks</p>

[Karen_Colleges]

<p>LTS- I’m glad that you have a place to vent. Sorry if everyone went off topic for awhile there. </p>

<p>Just wanted to remind you that your determination and grace under fire has been a huge inspiration to me and many others that are reading this thread. Reading your thoughts has helped me to help others over some rough spots, and has helped me keep a good attitude in the face of some disappointing health issues. Thanks again for sharing. </p>

<p>Are the daffodils blooming yet? I miss seeing spring flowering bulbs, and I’m jealous of y’all that have been to see the cherry blossoms.</p>