Cancer by Romaine Williamson

October 16, 2016
My priest asked me to do the sermon this Sunday. I immediately refused and here I am.  She said I should talk about my cancer. I’ve learned a lot in the last 6 years so I’m happy to share some with you this morning.

Immediately after my diagnosis I read a book. I like to read and I like to learn and I needed to learn about cancer. The book is “The Emperor of All Maladies” by Siddhartha Mukherjee. It is a biography of cancer. Yes, a biography. The author thinks of cancer as a living being and now so do I.
In 1924 a self-made Egyptologist bought a papyrus from an antique seller in Luxor Egypt. It was written in the 17th century BC from a transcription from 2500 BC. Translated in 1930 the papyrus contained the collected teachings of Imhotep, a great Egyptian physician who lived around 2625 BC. The papyrus was a list of case histories from patients he had treated. Imhotep wrote about broken bones, and dislocated vertebrae, burns etc. There were 48 cases listed. Describing Case 45 Imhotep advises, “If you examine a case having bulging masses on the breast; if you place your hand on the breast and find them cool, there being no fever, cool, hard, dense as hemat fruit and spreading under the skin”. I agree with Dr. Mukherjee, “there could hardly be a more vivid description of breast cancer.”

Every case on the papyrus had some sort of treatment, milk poured into the ear…balms for burns…for Case 45 under the section titled therapy, Imhotep offered one sentence, “there is none.”

The earliest archeological proof of cancer came when a 4000 year old jawbone was found in southeastern Africa carrying signs of lymphoma. Cancer mostly disappears from history after that. Cancer is an age related disease and most people didn’t live past 30. Men and women were long consumed by tuberculosis, cholera, small pox, plague or pneumonia. Longevity is the most important contributor to cancer. The longer we live the greater the chance to develop cancer. In 1900 the most common cause of death was tuberculosis, cancer was 7th. By 1940 cancer was number two. In that span, life expectancy increased by 26 years giving cancer a chance to be number one.

Right now in the United States, most data shows that 1 in 3 women and 1 in 2.5 men will develop cancer in their lifetime. I will let that sit with you for a minute.

So cancer is a disease caused by the uncontrolled growth of a single cell. This growth is unleashed by the changes in DNA that specifically effect genes and their cell growth. In a normal cell, genes regulate cell division and cell death. In cancer this regulation is broken, creating a cell that cannot stop growing. These cells adapt, repair themselves and live.

Cancer is a bad mother “shut your mouth”!

Listen carefully. When you tell people you have cancer be prepared. That’s why many people don’t say anything. They keep it a secret. This is unfair because the people who love them never have a chance to show them and tell them. Some people think cancer is embarrassing. People will treat you differently once they know, but the ones who you really care about and care about you will not. Cancer is seen as a weakness and some people will look at you as someone to be pitied and avoided. Some will shy away from you. Some will feel vulnerable and frightened.

When I confided this to a friend she said, “Romaine, people are frightened because if you, who eats right, exercises and is in perfect health can get cancer then they don’t have a chance.”

So tell those you love and care about. You know who they are. Later, word will get out and others will find out. Then come the comments.

Because we don’t talk about cancer in general conversation, kind of like race… people will say stupid stuff.

“My brother in law’s sister had metastatic polycystic carcinoma 10 years ago and she’s fine now!”
“Have you had chemotherapy? I love your hair.”
“You’ll be fine! You have such a great attitude!”
“My uncle’s nephew’s wife’s cousin went to a doctor who is doing wonderful things with peach pits and coffee enemas!” You should try to get an appointment!”

My favorite comment was from a friend who asked, “What a terrible thing that is happening to you, are you going to be alright.”? It was the perfect thing to say. It was honest and gave me the chance to say “I really don’t know, but thank you for asking.” No one could say I will be alright…or not! They don’t know. Hell, I don’t know! No one knows, especially doctors…

My oncologist is continually surprised when a treatment goes well. I realized pretty quickly that treatments are like throwing spaghetti at a wall. Sometimes it sticks, sometimes it doesn’t. You had better do your homework about your cancer.

So you get a diagnosis of cancer. First, get a hold of yourself! Like my mom used to say “don’t panic!” Evaluate your situation.
First, how are you doing? Are you in good shape? Lucky for me I happened to spend the last 20 years eating right, exercising and managing my stress for no good reason. I happen to love salads, tofu and bean sprouts. My kids used to say, mommy eats weeds. I only drink water, tea, coffee and wine on the weekends. I spent 6 years at home chasing my children and another 10 teaching preschool and kindergarten and chasing other peoples children. I stay active outdoors, planting and digging and weeding , defending my garden from squirrels. I hate squirrels.
I’ve managed my stress with bubble baths, and am lucky to have a husband who is also a great traveling buddy. I have super immunity from having spent so many years with germy children. No high blood pressure, cholesterol, bunions, asthma. If it wasn’t for cancer I’d probably live to be 100 plus!
Remember if you aren’t in good shape and get cancer, there are a lot of treatments you won’t be able to do, and then your options shrink. You don’t want shrinking options.
I’m an optimist.
“One thing that makes it possible to be an optimist is if you have a contingency plan for when all hell breaks loose.” That’s what Randy Pausch says in his book, “The Last Lecture.” Randy was a professor at Carnegie Mellon University who got pancreatic cancer. After he was diagnosed he wrote a book with advice for his young children about how they should live their life. Over the years I’ve told my children lots of things they need to know. Random but important advice like “never put your drink down at a party “ and “ everyone should get married at least once “ and, “be a good person, you’ll live a happier life.” Young people need good advice. Next time you see one, give them some.
When you get cancer you can bet “all hell done broke loose now!” (Isabel Sanford, Guess Who’s Coming to Dinner). I also enjoy movie trivia!
There is a Japanese proverb that I like:
“Fall seven times, get up eight.”
So get your contingency plan in place. First find the best oncologist for your cancer. Now understand this. Your local oncologist may be well and good but you need an expert on your cancer. Do you fix your own car? No. Do you clean your own teeth? No. You get an expert.
I narrowed my search to doctors who are doing the cutting edge research on my cancer. I can’t afford old treatments that may or may not work. There are 12,000 research papers a month on cancer. You need to find the smartest of the smart. Find the doctors who lecture and present at international conferences of your cancer. Next, apply for a new credit card and put it in a drawer. Your next treatment may be halfway around the world and you will need to move fast.
I called the famous Dr. X. at a prestigious cancer center.
“Forget it!” I was told. “No new patients. No way no how.” “But you can see his colleague Dr. Y.” My hopes dashed, I made an appointment. What do you know? Dr. Y is great! Cutting edge research, treating hundreds of patients a year with my cancer! Caring, experienced, smart and works hard presenting at all the international conferences.
And let me remind you of one more very important thing. Poor people die of cancer at a much, much, higher rate than rich people. Let me repeat that. Poor people die of cancer at a much, much higher rate than rich people. Most of it is lack of good health care. That plastic card in your wallet and the health plan it represents is a good predictor of whether you may live or die. But a lot of it is information and where to get it.
So even if you are not rich, like me, start traveling in those circles. You will learn who the specialists are and where they practice. Start attending the cancer fundraisers and conferences where you can meet and talk to the experts who “won’t take your calls.” Discover the new treatments and the strategies to alleviate chemo and radiation side effects. And guess what… you will feel better!
So, spend your money! Take a car service once in awhile to your appointments. Go to a cosmetic dermatologist for your sore skin.
I like this quote, too….
I go to seek a great perhaps.
-Francois Rabelais

Which brings me to the biggest problem with having cancer. You may just die. I know. People die of cancer every day.
It’s inevitable to think about dying if you have cancer. Of course you can’t talk to people about dying because it’s an uncomfortable conversation. It takes a special person not to get all crazy eyed and teary. They are called therapists. You can also go to a spiritual counselor, a priest or minister. Find a good support group. You will find everyone in the room is thinking about death and talking about it, too!
Thoughts about death can consume you. I thought about it every day for the first couple of years after my diagnosis. I became mean and resentful toward my husband. Apparently it’s very common. 30% of married couples dealing with cancer get divorced. I looked it up. I needed to stop focusing on a future that we might not have together. He will probably live a long life, move to the beach, have grandchildren, marry a younger woman with perky breasts….yeah…ok…I’m still working some things out….But, I realize the future we planned together might not happen and I feel sorry for him. So now I try to be very nice.
So if you find yourself spending lots of time thinking about death, I suggest you give yourself 10 minutes a day to think about what will happen when you are dead. Let your mind run free!
Think about your funeral. Who do you think will show up? Will they come because they really feel badly that you’ve died or just to see the house? Who will get your car? What will they do with your nice dresses?
But you are only allowed to think about your death for 10 minutes a day. That’s all. And you know what? After a while you will forget to think about dying. Days will go by and you won’t think of it once. And that’s good.
My latest epiphany came when I was sitting on my porch with Fudgy.
I’d been consumed about not having grandchildren. I am an expert on babies and I deserve grandchildren. Almost all of my friends have grandchildren. If I didn’t have cancer I wouldn’t give it a thought. But like they say, “Time is all you have and you may find one day that you have less than you think.”
Why am I getting so upset about not having grandchildren? I would probably get all overly involved. They take so much time and energy. And just like your own children, you have no control over how they will eventually turn out. I’ve made peace with all my parenting mistakes by understanding that the best you can do is hope they will someday have their own health insurance that will pay for the therapy they’ll need from you having screwed them up. And you know what? I think some people, not all, but some people are blessed with grandchildren for another reason. They might not have had the opportunity to enjoy their own children. They might well have messed up the first time and fate stepped in to give them another chance. Well, the years I’ve spent with my children, I have no regrets. I’ve enjoyed them and they’ve enjoyed me. I don’t need any do overs!
Do have a grand dog that makes me very happy. Her name is Fudgy and she’s the worst dog in the world. She gets into all kind of mischief and never does what she’s told. I love her.
So if you take anything away from today take this,
If you know someone with cancer or any debilitating, awful, or life threatening illness do this…
1. Be nice. Listen to them if they want to talk about their illness. Even if you are uncomfortable, because they are way more uncomfortable than you.
2. Ask them how they are doing. Don’t say… “I am so sorry you have cancer….” and you start to cry! Then they will say.”aw that’s OK.” No it’s not! Don’t put them in a position where they comfort you!
3. Do something for them. Don’t ask first, just do. Nothing extravagant please. Give them a ride, share a book, pick up some dog treats, make them some soup.
4. Bring them a Popsicle. If eating is an issue, (and it’s always an issue when you have cancer) Popsicles are really good. They are especially good after chemo or radiation or just when you’re feeling lousy. Popsicles are the food of love.
If YOU have cancer or any debilitating, awful, painful, terrible or life threatening illness that will not go away do this….
1. Enjoy yourself all the time. Do whatever you want. Do not have any contact with anyone or anything that will keep you from the contented state you want to be in. Repeat that out loud!
2. Spend your money. No one deserves it more. You will be dead and whoever gets it will not use it in any way, shape or form that you will be pleased with. Then give the rest to the church!
3. Surround yourself with love. Those who love you will ease your pain just by loving them back.

The End
She stood in the storm. And when the wind did not blow her away, she adjusted her sail.
-anonymous

In Praise of New York HIICAP Medicare Counseling

I will be covered by Medicare starting on December 1, 2016 because I will have been collecting Social Security Disability for 2 years as of that date, and all recipients of Social Security Disability are automatically enrolled in the Medicare program two years following their SSD starting date.  Daunted and confused by the seemingly endless array of options, I went to see a Medicare counselor in New York city at the NYC Department for the Aging.  I have nothing but the highest praise.  You may have heard the term “SHIP (for State Health Insurance Assistance Program) counselor”, which is the term for these counselors in most other states, but here in New York they’re called HIICAP counselors, for “Health Insurance Information Counseling and Assistance Program”.  It was an excellent experience. I received easy to understand, valuable information that made my choices crystal clear, all within about 30 minutes without charge.  Most of all, I think my 30 minute time investment will result in substantial financial savings to me.  Pretty impressive.

I think the thing I learned from the counselor that surprised me most was that he sees mostly low income Medicare recipients.  Not that I doubt for a second that low income recipients need counseling.  Just that there are so many options for middle income folk who can afford to pay a bit more, that I don’t see how anyone makes these decisions without some expert help.  The counselor even gave me tips for using the Medicare website to be sure to obtain the results that would be most accurate.  And the tips were not inherently logical – they just related to the way the website happens to work.

Perhaps most impressive was the information I received about the EPIC program here in New York that appears to be nothing short of a windfall for those of us NET patients who use expensive drugs.  (Unfortunately for me, you have to be age 65 or older to qualify, which means that those of us who qualify for Medicare on the basis of being disabled are generally excluded.  This is an important exclusion for those of us who are affected by it, however, for purposes of describing the program, I will not mention that exclusion again here.)  Because EPIC assistance is based upon income, my husband and I assumed I wouldn’t qualify, but we were wrong.  This New York program has its own unique definition of “income” that excludes all interest and dividends from investments and still assists individuals with “income” up to $75,000 and married couples with “income” up to $100,000 per year.  Based upon these parameters, it would seem to me that many fully retired (as in non-working for pay) New Yorkers probably qualify.  So, for those of us New Yorkers using Sandostatin LAR or Somatuline Depot, among other very expensive drugs, even if your drug plan is pretty good, if you qualify for the EPIC “Deductible Plan”, you’ll probably pay less.  Under the EPIC Deductible Plan, you pay for your prescriptions until you meet your EPIC deductible, which is based on the previous year’s income. I don’t know how it’s calculated, but as an example, the counselor said my deductible would be $1200. After meeting the deductible, I would pay only the EPIC co-pay.  The co-pay is based upon the prescription cost and ranges between $3 and a current maximum of $20.  This means that after meeting the deductible, I would be guaranteed to never pay more than $20 for a prescription for the rest of the year.  All I can say is I hope this plan is still in effect when I reach age 65!

Like other SHIP counselors, HIICAP counselors offer Medicare beneficiaries free advice on how to choose from an array of drug and health insurance plans that can be truly mind-boggling. Furthermore, their counseling includes how to challenge coverage denials and how to obtain financial subsidies for premiums, co-payments and deductibles. Topics covered include Medicare Parts A and B, “Medigap” insurance, Medicare Advantage health plans, Medicare Part D and Medcare Savings Programs.  The counseling is free and is available both over the telephone and in person by calling 311 and asking for HIICAP.

For those who are considering reaching out to a HIICAP counselor, unfortunately it appears that this should be done sooner rather than later. While researching a few facts for this post, I was disheartened to learn that in June of this year the Senate Appropriations Committee approved the FY17 Labor, HHS, Education Appropriations bill with a nearly unanimous vote of 29-1. That bill would eliminate the entire $52.1 million in federal funding for the Medicare State Health Insurance Assistance Program (SHIP), effectively eliminating the program. The House Appropriations Committee has not yet taken action on its version of the FY17 Labor, HHS, Education Appropriations bill, but is expected to do so in the next few weeks. If you have been helped by this program as I have, or if you wish to take advantage of the program in the future, this is an excellent time to write to your representatives in Congress, as well as to our New York senators, Chuck Schumer and Kirstin Gillibrand.

Nancy Stone

 

 

 

Request for Market Research Participants

We have received a request from Flince Research & Design, a global healthcare market research consultancy, to ask the members of our community for their participation in a market research interview.  Specifically, Flince is seeking NET patients who currently or at one time have had symptoms of Carcinoid Syndrome, specifically diarrhea.  Participation is open to a broad base of NET patients, including those with gastrointestinal NET tumors, pulmonary and lung NET tumors, and pancreatic NET tumors.  In addition, we are told that a participant may be anyone with a carcinoid tumor or who suffers from short bowel syndrome.

The interview will consist of a single 60 minute telephone conversation and each participant will receive $200 for his or her time and opinions.

Anyone interested should contact:

Jason Turner
Flince Research & Design
Telephone: 773.383.9090
jturner@flinceresearch.com

The company’s website is www.flinceresearch.com

Notes from the Front Lines

Notes from the Front Lines, January 2016

The War
The years prior to the war were spent in relative contentment.  My chosen occupation had given me the opportunity to spend my days in the company of young children. Filling me with their warmth and laughter but most importantly building within myself super-antibodies from the filthy germs they spewed daily.
Stress? Not with 2-3 beach vacations a year with my favorite fella.  My children maturing nicely and not pissing me off too much made home life content.
The consumption of bean sprouts and tofu combined with weekly spin classes and yoga had my mind and body in sync with the cosmic alignment.  My opponent had underestimated me. It would prove a costly error.

The Battle of Surgery Fu**in Hurts!
The war began with an invasion.  The surgeon leading the charge was the best in the country.  The enemy was taken swiftly.  There were casualties.  Half a pancreas and the spleen were lost.  Recovery was slow, the pain massive.  After they wrenched the morphine pump from my fist they sent me home with a couple of Oxy, Snickers bars and a clean bill of health.

My Army
Ten months later a routine scan showed my liver looked more like swiss cheese.  A battalion of tumors had invaded my liver.  Their sheer number and size precluded any kind of surgical assault.  Understanding the cunning of my adversary I had already begun assembling my battle forces months before.
I recruited two general commanders, a medical oncologist and a research oncologist.  Considering the rarity of my cancer, I needed someone on the cutting edge.
Both women, they are the most important relationships I have.  Yes, husbands can prove to be very helpful also, but its much more difficult to find an excellent female oncologist in the tri-state area. You can always get another husband.  People do it all the time.  
From a terribly short list of options, the doctors and I made a plan. 

The Battle of Chemo Hill
Chemotherapy. Drugs used to eradicate cancer cells.  There were five types available and we would use each in succession. The plan was to use each one for the longest available time and destroy as many tumors as possible.  
For four years the battle raged.  One treatment never took hold, another failed quickly and the enemy made deep inroads, ultimately taking out half a lobe. Another worked so well, some tumors shrunk completely away resulting in a year long cease fire that I enjoyed tremendously.  Oh, my friend Jose Cuervo, I miss ye…
There were losses, a couple of toenails and some loose teeth. One drug removed the pigment from my hair turning it white! Stopping the drug caused it to turn brown again!

Nuclear War
We’ve now entered into a new era.  Nuclear medicine.  A trial study begun in Europe has given me the opportunity to become participant #3 in a targeted radiation therapy.  My lucky number.  
Specific chemicals attached to radiation are blasted through the bloodstream to attach to receptors on each individual tumor.  Once there, the chemicals cause the tumors to swell and BOOM!
My first treatment was Thursday.  I am now fully radiated and looking forward to whatever mutant superpowers I may have acquired.

Conclusion
I have added 3 new general commanders to my war council/book club.  General of Morale, General of Spiritual Advisement and General of Nausea Abatement.  They are diligent and capable in their roles.
I am now recruiting Storm Troopers. 
Here’s hoping the enemy is on the run.  I’ve already booked next years vacation.


From the Frontlines on the War on Cancer

 

Here’s What Really Happens

Here’s what really happens

It’s not like on TV where a 50ish year old man, graying ever so slightly at the temples sits behind a big oak desk in an office crowded with framed degrees from Ivy League medical schools. You hold the hand of your spouse and the doctor says in a low tone, “I’m afraid Mrs. Williamson, you have cancer.”

You sob quietly as your spouse puts his arm around your shoulders…

It’s not like that at all. Here’s what really happens…

You have a pain.  It’s an ordinary pain.  It’s somewhere between your stomach and your back. You’ve gone to your GP. You’ve had tests. They show nothing.

You aren’t always in pain.  But, sometimes after too much wine with the girls, sometimes after dinner at the local kabob house. It goes away with Advil and Tums.

You’ve taken to carrying Tums in your purse.

One morning the pain doesn’t go away.  You are very sick. Your eldest takes you to the emergency room.

They poke and prod.  The nurse asks lots of questions, “ever had high blood pressure or cholesterol, diabetes or heart disease, glaucoma, asthma, broken bones, lupus, sciatica, arthritis, bunions…?”  You don’t even catch cold.  No, no and no.

“Gimme the morphine, doctor”! You feel much, much better, have stopped vomiting.

“Maybe it’s a virus, the flu, here are your discharge papers”…..but wait, the doctor comes back…. he’s just an intern, so young… but… ”while you’re here, let’s take a scan” he says….

He returns, “Mrs. Williamson, we see something…”

Doctors

The gastroenterologist  says, ”we’re hopeful”. The oncologist says, ”we need another biopsy.” The surgeon says “I’m the best in the country”!

They all call it a “tumor” that has to come out. They say “we’ll see when we get inside…. sign this paper that says we can remove whatever we want…”

They never say cancer.

Telling People

Now you have to tell people.  The kids first.  So you call a family meeting.  The kids are skeptical because family meetings are only called to discuss summer vacation.  It is November.

You matter of factly say “I have a tumor and in a few weeks I will be having surgery to remove it.” You’ve used an English accent for no apparent reason.

You are shocked when the girl begins to cry hysterically. The oldest loses all color in his face and begins asking questions about doctors and hospitals and treatments.  The youngest loudly proclaims he “knew something was going on and he is always the last to know”!! and then begins to hyperventilate.

The spouse turns to you and says  “see, now you’ve upset everyone.”

The Internet

The Internet is good for a lot of things, finding ways to cure your cancer is not one of them. You’re on the internet every night.

You learn everything you can, you find obscure medical journals, you make copious notes.  You look at statistics. They talk about “tumor progression” and survival, in months not years.

The statistics are dire. You stop looking at statistics. You’ve stopped crying months ago. You begin to get very, very angry.

Every morning as the hot water beats down on your head, you pound your fists as hard as you can into the shower tile.

Like Rocky…hitting, hitting, hitting the beautiful white marble tile.  Until your knuckles bruise.

Support

All the cancer blogs say a support group is “helpful on your cancer journey” especially if you are having trouble “following the path toward survivorship”.

Scouring the chat rooms and blogs no one mentions the mind numbing homicidal blind rage you are experiencing every day.

It is very unlikely that you would receive cancer treatment in the New Jersey prison system so it would be expedient to handle the problem.

Support group #1 Pancreatic Cancer group meets Tuesday mornings at the ABC Cancer Center. Call Patty to register!

I get there early and find Patty.  She smiles tightly. Slowly the other participants arrive.

There are three men with pancreatic cancer; they each have a family member; wives, sisters, daughters.

One woman whose husband was recently diagnosed arrives alone looking like she is in the wrong place. Her future staring at her from around a conference table.

One man with the complexion of a yield sign asks me what kind of cancer I have, I tell him and he says that’s the “good” pancreatic cancer.

I am on my way to work so I am Ann Taylor tight, down to the black sling backs.  I have a head full of hair, albeit white (a side effect from a current treatment). I look good.

They hate me.

Support Group #2 Cancer Support Group meets Sunday afternoons at Random Cancer Center. Call Wendy to register!

They are all breast cancer survivors. They are happy and hopeful and full of rainbows and pink ribbons.

I am angry and sad and trying hard to smile.

I feel an overwhelming desire to snatch head wraps off of bald heads.  I mumble something about the ladies room and leave.

Art Therapy for Cancer Survivors.  Meets Wednesday mornings at 10:00. Call Marcy to register!

I arrive in my Halloween costume.  I am wondering why no one else has.  It is Halloween.  Even with cancer it’s still Halloween. I am a pirate.  I look fabulous.

“Today”, the counselor says “we are going to make Christmas ornaments.”  She demonstrates how to pour paint inside the plastic ball and swirl the colors together.

She uses red and green. The paint swirls in waves, it looks beautiful. Then she covers the ball in gold sparkles.

I pour the paint and swirl it around. The red and the green turn brown. I ask for another. It happens again. I try it 4 more times.

I now have 5 brown Christmas balls covered with gold sparkles.  When she leaves to get more supplies I take her balls and flee.

Hey, I am a pirate….!

My oncologist says “my attitude is hindering my treatment” and I should try a personal cancer counselor.

Personal Cancer Therapist.   Call Missy for an appointment!

She greets me and shakes my hand. It is a small office with a tiny sofa covered in a rose print. It’s uncomfortable.

She takes the office chair and asks about my cancer. I notice that there are tissue boxes everywhere. I don’t feel in the least like crying.

I already feel like I’m disappointing Missy.  She listens to my story. I tell her that I think this whole episode is a terrible mistake and I shouldn’t have cancer and I am very angry about it.  She asks me “what should it feel like to have cancer”? I don’t understand the question.

She asks me, “how should I feel because I have cancer?”  She seems to want an answer but I still don’t understand the question.

If I knew what it feels like to know I have cancer than I would feel that feeling. But I don’t know. I am getting dizzy.

After an interminable 30 minutes she asks if I want to make another appointment. I tell her “I believe I will continue my journey on my own.”

I’m getting good at this ridiculousness.

I continue my search…

Group #3- Big Apple Nets- Support and Information for the New York City area Carcinoid and Neuroendocrine Cancer Community

I get there early. In case this turns out to be a bust I’ve checked out some shops on Lexington and picked up a pair of darling kidskin flats.  I ring the bell trying to remember if I’d given John the address.  I am going to a strange apartment in New York City. My Aunt Lizzie would say this is just the situation where you’re likely to be kidnapped and sent on a boat to Singapore!

The door is open.  The room is sunny.  There are smiles and laughter. “Welcome”!

This is where this new adventure has led me. These are “my people”. We know the lingo, “carcinoid…neuroendocrine tumor”. We talk about research and treatments and doctors and hospitals.  We talk about pain and healing and insurance and drugs and families and jobs and travel. We talk about everything.  This is a good place.  This is a safe place. This is what I needed. This is what you need.

R-

Survey Results

Thank you to all of those who participated in our recent short survey.  We had an excellent response rate!  Our purpose was to get a sense of how our support group can better meet the needs of the local community.  The questions and multiple choice responses were as follows:

Q1: “Would you be interested in joining a NET cancer support group that meets in Manhattan?”

A1: 86% chose “Yes”, 14% chose “No”.

Q2: “If yes, when would be the best time for you to attend group meetings?”

A2: 40% chose “weekend afternoon”, 25% chose “weekday daytime”, 20% chose “weekday evening” and 15% chose “weekend morning”.

Q3: “Please rank the importance to you of the following reasons for attending support group meetings from 1 (most important) to 3 (least important).”

A3: 67% chose “education and information” as most important, 33% chose “emotional and peer support” as most important, and none chose “social action or advocacy” as most important.  Also, none chose “education and information” as least important. 

Q4: “Are you interested in attending educational events on NET cancer related topics?”

A4: 70% chose “Yes, regardless of whether or not they are part of or separate from the support group meeting”,  20% chose “Yes, as part of the support group meeting”, 5% chose “Yes, separate from the support group meeting” and 5% chose “No”.

Q5: “How often would you be interested in attending a support group meeting?”

A5: 48% chose “Monthly (12x/yr)”, 29% chose “Quarterly (4x/yr)” and 24% chose “Bi-Monthly (6x/yr)”.

Q6: “If you would prefer not to join a NETs support group, please tell us why.  Check as many boxes as pertain to you.”

A6: Of the few respondents who answered this question, most chose “There is no group that is conveniently located for me”. 

We will be working on ways to apply this new information to better meet the needs of our community.