Setting Limits for Hospital Visitors

As much as we appreciate cards, calls and visits from friends and family, during or following medical care, some appendix cancer patients and their families feel overwhelmed when hospital and home visits are “overextended.”

This week I received an inquiry from a caregiving “Pal” who expressed the following concerns:

“My husband is recuperating from CRS and HIPEC, and returned home, from the hospital, last week. A visiting nurse comes by to change his bandage each morning.

My husband needs to take a long nap every afternoon. Several neighbors, relatives and co-workers have stopped by to visit unannounced. I feel uncomfortable asking them to call first or to limit their visits. My husband almost feels obligated to answer all calls and accept “drop in” visitors. He is clearly fatigued yet feels we must “entertain” friends and family.

I am running short on patience and wonder how other spouses manage balancing caregiving while setting limits for visitors.”

In response, I share the following suggestions for enjoying visits from friends and family while setting boundaries to respect your personal “space.”

Hospital and home visits:

Set limits for your own, or for your spouse’s visiting hours in the hospital and at home. Limit the number of visitors you, or your spouse will receive and during which days and hours. Tell friends and family “John is awake for visitors on Sunday, Tuesday and Thursday from 1 to 2 PM. He requires the remainder of the day for rest and medical care.”

Advise the nurses at the call desk of your preference for visiting hours. Visitors don’t always check in at the call desk, therefore, you will also need to post a handwritten sign on the door to your room, advising everyone of your personal visiting hours.

Don’t assume that “other cancer patients” who may visit you, will be perceptive of your energy limitations; they will not be.

Many well meaning and caring friends and relatives have NO concept of how tired post op CRS and HIPEC patients are, what they have experienced in the hospital, the amount of uninterrupted time that patients need to bathe, change dressings, attend to “bathroom needs” (which are generally more frequent during the weeks immediately following surgery) the time required to eat and consume nutritious foods, or to administer TPN and change bandages without having the

Gifts for patients:

Likewise, visitors may be unaware of appropriate gifts for recuperating appendix cancer patients.

Many gastrointestinal cancer patients experience nausea, especially following HIPEC or other chemotherapy treatment(s.) Therefore, when selecting floral arrangements, visitors should select non fragrant flowers, i.e. tulips or cyclamens, or non flowering plants.

Thoughtful gifts include music selections, light hearted films and DVDs, crossword puzzles, magazines and books.

Whether patients are recuperating in the hospital, or have returned home, they, and their family caregiver, will appreciate gifts of an hour or two of housekeeping services, laundry/dry cleaning, grocery shopping, transportation to medical appointments, extended childcare, gift cards, prepared meals, comfy lounging apparel, care and shelter of pets, etc.

Visitors should limit wearing, or giving, gifts of fragrances, scented lotions, and perfumes. Patients may easily become nauseated from aromatic food or beverages, including coffee, therefore, visitors should limit their own refreshments to the hospital cafeteria or coffee shop.

Telephone calls:

Post an outgoing message on your cell or home voicemail advising friends of your “telephone hours.” Tell friends and family that you welcome their incoming calls during specific hours of the day and for brief durations of time. Here is a suggestion for your voicemail message:

“Thank you for calling. Please call back between 2 and 4 PM. During my recuperation I am limiting calls to ten minutes per caller.”

Create a “visiting policy” that works for you:

Patients and their family caregivers can sit down together and discuss their own needs for setting limits for visitors. Friends and family will never know your personal preferences unless you tell them your wishes!

For more articles on this topic, visit www.pmppals.org




Articles posted in PMP Pals and on www.pmppals.org are written from the perspective of patients and their family caregivers and are not intended as substitutes for licensed, professional legal or medical advice. Each case is unique; therefore, patients should seek their own professional medical counsel. Copyright © 2012 by Gabriella Graham/PMP Pals’ Network. All rights reserved. Visit us on the web at www.pmppals.org We have HOPE for YOU!

 
 
_ Five Quick Steps for New Cancer Patients

1. Obtain your medical records

Obtain and organize your medical records. You are entitled to all written (transcribed) copies of your medical reports including your lab tests, pathology, operative and radiology reports, as well as copies of your CT or MRI scans on CDs. You may obtain copies of all these reports from your hospital, clinic, or doctor’s office(s.)

Having one’s own medical records within arm’s reach (stored in file folders, a binder, a USB “thumb drive” etc.) is not only comforting to many patients, but practical, especially in emergency situations or while traveling.

2. Understand your diagnosis

Most patients are not healthcare professionals, therefore many patients feel overwhelmed when reading their own medical reports. Terminology may be confusing. It’s easy for the nonprofessional to become distressed by nomenclature (refer to our Appendix Cancer Glossary) when reading one’s own medical reports.

Now that you have obtained your medical records, including your pathology report, develop and refine your list(s) of questions to discuss with your physician specialist.

The PMP Pals’ Network Handbook: Questions to Ask Your Surgeons provides sample lists of questions.

Although you share a  diagnosis with other patients, each case is truly unique and each patient is an individual, therefore, your case deserves personal consideration by whichever specialist(s) you consult with.

3.  Assemble your healthcare team

Your team may include a variety of healthcare professionals including an oncologist, surgical oncologist (the true specialist in the treatment of appendix cancer, Pseudomyxoma peritonei and other Peritoneal Surface Malignancies.)

Following surgery and during chemotherapy, your healthcare team may include a gastroenterologist, endocrinologist and a licensed dietician. Ask your team of healthcare professionals to communicate among one other regarding their participation in your treatment plan. Don’t forget to include your dentist on your health care team!

4. Examine your health insurance

Examine your health insurance policy carefully. Are the most qualified, most experienced physicians specializing in the treatment of your diagnosis covered by your plan?

Review your insurance plans policies for co pays, deductions, home nursing assistance, lifetime maximums, etc.

Pay close attention to pre authorization and certification requirements before scheduling any medical procedures and treatments including tests, scans, surgery and chemotherapy.

Review your medical bills carefully, checking for diagnostic code or other billing errors.

While some health insurance providers staff case managers to “assist” you in managing your treatment plan, ask yourself, “is this case manager advocating for me or for my insurance company?” Our advice is to serve as your own advocate, or to appoint a close trusted family member or friend to co advocate with you. You need to put your needs first!

5. Protect your privacy

When you are newly diagnosed or in the midst of treatment, it may be tempting to open your heart or vent your feelings online, but be aware that anything you post via social networking can be viewed by others and can be easily intercepted. The angst and details about your medical condition you post today can be read by current and future employers, creditors and nosy neighbors tomorrow.

Do not post information about your minor children, the location of your home, the duration you will be away from home for medical care, etc., online, especially via social networking on “care” page forums, as this information can be intercepted and seriously abused.

 


Articles posted in PMP Pals and on www.pmppals.org are written from the perspective of patients and family caregivers and are not intended to substitute for professional, licensed legal and/or healthcare advice. Patients should seek the counsel of their licensed professional consultants regarding their specific needs. Copyright © 2012 by PMP Pals’ Network/Gabriella Graham/All rights reserved. Visit us on the web at www.pmppals.org

 

 
 
_ PMP Pal Family Donates $9,400 to PMP Research and Awareness!


When fourteen year old Amos’ father, Rene, was diagnosed with Psuedomyxoma Peritonei, the high school student experienced the concerns felt by any youngster who learns his parent has a rare and challenging disease.

Amos became concerned when he observed the months of uncertainty and lack of knowledge about PMP among local physicians, until his father finally connected with specialist, Dr Viktor Verwaal in Amsterdam.

Amos realized the need to bring awareness about the diagnosis and treatment of PMP to Holland. He set about to create a unique method of raising funds to support Dr Verwaal’s Peritoneal Surface Malignancy research program, while bringing attention to the rare diagnosis of Pseudomyxoma Peritonei.

Having been raised in a family where appreciation and nurturing of is personal musical talents had been encouraged, Amos focused his concerns for his father into creating a CD comprised of his own arrangements of music he composed, as well as standards by the Beatles and Rolling Stones.

Amos attached a label stating “Against PMP!” to his CDs and shipped three dozen copies to the US in support of the PMP Pals’ Network.

He then proceeded to sell his CDs in his native Holland and collected funds to support the research conducted by his father’s surgeon specialist, Dr Victor Verwaal.

Amos is now 15 years old and, his father, Rene, is now more than one year post op from CRS HIPEC. Both Rene, and his wife, Suzanna, have returned to work, while Amos and his older brother, Tobias, continue their studies in higher education.

Last week, Amos and his family, visited Dr Verwaal for one of Rene’s post operative check ups. During that visit, Amos presented Dr Verwaal with a check for nearly 7,200 Euros to benefit research and to expand awareness about the accurate diagnosis and treatment of PMP in Holland!

Amos presented the check to Dr Verwaal during a reception held at the Antoni van Leeuwenhoek Hospital in Amsterdam. During the reception, Amos treated the hospital staff and guests to selections from his musical arrangements.

Amos began composing his own music when he was 12 years old. Sadly, his piano teacher is also a cancer patient now.

Amos and his family provide us with yet another example converting the challenges presented by cancer, into providing hope and encouragement for future patients and their families!

 

For more information about Pseudomyxoma Peritonei, visit www.pmppals.org

For more information about Dr VJ Verwaal and other HIPEC Treatment Specialists, visit www.pmppals.org

 

 

Copyright©2012 by Gabriella Graham/PMP Pals’ Network. All rights reserved.

Visit us on the web at www.pmppals.org

We have HOPE for YOU!

 
 
_ Post-Operative Weight Loss & Canned Supplemental Beverages


Family caregivers and, indeed, patients themselves, are surprised if the patient does not gain weight quickly following GI surgery, even though s/he may be consuming canned liquid "nutritional supplemental beverages."

Patients and their family caregivers may not realize that these canned supplemental beverages may lead to the "Three D's", (diarrhea, dehydration and distress) and may prevent post-operative weight gain.

These symptoms may occur in GI cancer patients who have experienced colon resections, gastrectomies, ileostomies, etc.

Commercial canned beverages generally include high percentages of simple sugars (corn syrup) and milk/lactose sugars (milk solids.) These ingredients contribute to diarrhea in patients who may experience "short gut syndrome" and "dumping syndrome" post operatively.

The consumption of commercially prepared supplemental canned beverages, as well as any sweeteners, simple sugars and lactose products, may actually create conditions of weight loss and malabsorption instead of weight gain.

For more information on post-operative nutrition, refer to “Nutrition” link on www.pmppals.org


For specific recommendations regarding your personal nutritional needs, consult with a licensed dietician/nutritionist or physician. The PMP Pals’ Network does not provide medical advice. Patients must seek the counsel for their own physicians and healthcare professionals.


Copyright © 2012 by Gabriella Graham and the PMP Pals’ Network. This article is copyrighted and may not be reproduced without written permission from the author. Visit us on the web at www.pmppals.org We have HOPE for YOU!

 

 
 
_ Friends Can Help Young Families Affected by Cancer!

Adapted from KidsKonnected.org

 

Do you know a young mom or dad going through cancer treatment?

While the parent/patient may be receiving support from fellow adults, quality time, normally devoted to the children, may be reduced while adults in the family tend to the details of cancer treatment, employment, health insurance, etc.

Can you volunteer one or two hours a week to support the child or children of that parent?

Here are suggestions to help you share your time and “pinch hit” to help care for your friends’ children, during times of need.

When visiting a family affected by cancer…

acknowledge the fact that the child's parent is sick. The child is aware of the parent's sickness. Acknowledgement of this fact allows the child to be able to talk freely about how (s)he is feeling and shows the child that you care about not only the parent, but the child.

Ask the child, "How are you doing"? By asking how the child is doing, you give the child a sense of self-worth.

Be available to help support the family!

Here are suggestions to provide practical support…

Take the children to soccer or softball practice.

Take the children to dinner or a movie; give the parents some quiet time together.

Grocery shop for the family; stock the refrigerator with food that the children can easily prepare for themselves.

Provide for a fun distraction!

Family life is strained when a parent has been diagnosed and is going through treatment. Relief from that stress, even for a brief period of time, can make a big difference to the child's emotional health!

Offer to take the child/children to play dates, sports activities, trips to the library, bike riding, visits to the park, etc.

Be available to just listen!

Dealing with the emotional side is critical and an integral part of what the parent and child is going experiencing. Allow children to express their feelings about their parent’s health, in an environment of love, caring and understanding.

These suggestions were developed by Kids Konnected. Visit kidskonnected.org for more resources to assist children whose parents have been diagnosed with cancer



Articles posted in PMP Pals and on www.pmppals.org are written from the perspective of patients and family caregivers and are not intended to substitute for professional, licensed legal and/or healthcare advice. Patients should seek the counsel of their licensed professional consultants regarding their specific needs. Copyright © 2012 by PMP Pals’ Network/All rights reserved.

 
 
_ PMP Pals' Network Begins 14th Year of Service: 1998-2011

 

This month marks the beginning of the fourteenth year of service for the PMP Pals' Network!

Our volunteer "grass roots" program serves patients and their families in 49 countries and in more than a dozen languages!

Developed by a cadre of ten dedicated patients and family caregivers in Holland, the United Kingdom and the United States in 1998, our goals have remained consistent and proven to be successful for more than a decade.

Our mission has been to assist patients in obtaining the best possible medical care/treatment for rare cancers/diseases affecting the digestive system,

To provide practical resources and support (financial, health insurance, transportation, etc.)

To provide pre screened, trained and vetted "Pal Mentors" to share helpful suggestions for pre and post treatment recuperation,

To educate the public about our rare disease, treatments for our disease and the need to support research for treatment,

And, in conjunction with our first goal, to interview, vet and publicize responsible healthcare providers who demonstrate expertise in the treatment of our disease.

Of the Founding Members of the PMP Pals' Network, including Pal Family Caregivers Bernard Goldberg, Sara Shatford Layne PhD, Tom Panek and Audrey Ragan, three remain living today, with octogenarian Mr. Panek having passed away due heart disease three years ago.

Of the Founding Members of the PMP Pals' Network, including Pal Patients, Elizabeth Collins, Henry den Hartog PhD, Gabriella Graham, Charlotte Lindon, Edie McCall and Joan Panek, two remain living today, with Mrs. Collins, Dr den Hartog, Mrs. McCall and Mrs. Panek having passed away due to complications from cancer.

Surviving Pal Patients, Mrs. Lindon and Mrs. Graham, share the same diagnosis of metastatic mucinous adenocarcinoma with Pseudomyxoma Peritonei. Neither of these patients have ever been cancer free. Both are veterans of numerous surgeries for palliative care, and remain active participants in the PMP Pals' Network today, in spite of their original poor prognoses. Mrs. Lindon celebrated her 91st birthday two weeks ago!

The PMP Pals' Network is proud to provide patients and their families with the most comprehensive source of practical information regarding Appendiceal Cancer, Pseudomyxoma Peritonei and all Peritoneal Surface Malignancies via www.pmppals.org, a site so popular that it has been copied by other "support groups" and healthcare industry companies.

The "Pals" pride themselves in providing "real time" and face-to-face support and resources for patients and their families. In spite of the rarity of our various diagnoses, we are able to personally match liked minded patients and their families, in a manner that provides true comfort and assistance at a time when it is needed the most.

PMP Pals puts the "CAN DO!" in Cancer!®

We CAN outlive our prognosis!

 

We CAN live well in spite of a challenging and rare diagnosis!

 

We CAN find a cure for our rare disease!

 

Thank you for your participation in the PMP Pals' Network!

 

 

Articles posted in PMP Pals and on www.pmppals.org are written from the perspective of patients and family caregivers and are not intended to substitute for professional, licensed legal and/or healthcare advice. Patients should seek the counsel of their licensed professional consultants regarding their specific needs. Copyright © 2012 by PMP Pals’ Network/All rights reserved

 
 
_ Holiday Air Travel Tips for Cancer Patients!

Patients may have special needs when traveling through busy airports, especially during the busy holiday season!

Whether you are recuperating from recent surgery, or are lacking the marathon strength stamina often required for current air travel, you and your caregiver (spouse/family member) may consider the following options for requesting “curb to curb” assistance for your next flight!

1. Read the TSA guidelines for disabled passengers as posted on www.pmppals.org

2. Request "curbside" wheelchair service when you make your plane reservation (the airlines do not charge extra for curbside wheelchair service.)

3. When your cab/car service drops you off at the terminal curb, a porter will bring a wheelchair for you to the curb for you.

4. The porter will take you, in the wheelchair, with spouse/friend accompanying you as your caregiver, directly to Security (the porter will push the wheelchair.)

5. You and caregiver will receive priority Security check in.

Priority Security checks in may require taking you aside to a private area for a pat down or bringing you straight through "regular" Security where you may also receive the pat down, in front of the public and be scanned. Advise the TSA attendant if you have an Ostomy, prosthetic, feeding tube or any other medical apparatus. Be prepared to show all carry ons, including those for medical supplies to the security agent. You may also consider bringing a letter or note (written on a prescription letterhead) from your physician to confirm your need for particular apparatus.

6. Via priority check in with the wheelchair, you won't have to wait in line for Security...you'll get to the head of the line with the wheelchair porter

7. The wheelchair porter will take you directly to the final check in for your plane (and will take you make "pit stops" at the food court or restroom along, if need.)

8. The wheelchair porter will leave you and your chair at the final check in. This is where you generously tip the wheelchair porter who has been so helpful (and who is earning minimum wage!)

9. The airline staff will take you, in the wheelchair, with your caregiver accompanying you, into PRIORITY boarding, REGARDLESS of which class of ticket you are holding.

10. When you arrive at your destination, another wheelchair porter will meet you, take you to baggage pick up and finally take you to the curb where, where your family or cab can retrieve you.

Anyone reading these steps can follow them whenever you or a loved one is flying with a temporary (e.g. recuperating from surgery) or permanent disability!

 

 

Articles posted in PMP Pals and on www.pmppals.org are written from the perspective of patients and their family caregivers and are not intended to substitute for licensed, professional legal or medical advice. Individual should seek counsel from licensed professionals regarding their specific needs. Copyright © 2012 by Gabriella Graham/PMP Pals' Network/All rights reserved. Visit us on the web at www.pmppals.org

 
 
_ Cancer Cannot Control Our Holiday Spirit!


Every morning I review the incoming updates as Pal members around the world report information about their current health status. The reports range from happy news of clear annual CT scans and normal range tumor markers to exchanges about chemo regimens that may no longer be effective in halting tumor growth among specific patients. We also address the needs of those families who are experiencing their first holiday season following the loss of a loved one.

Much like Ebenezer Scrooge and the Grinch, cancer attempts to creep into the holiday season to steal our joy. Regardless of how ruthless cancer may be, it does not defeat the fighting spirit of our fellow cancer patients and their families!

Countless Pals report they are “taking a break” from chemotherapy for the holidays, ready to re-engage the cancer beast again in January with a stronger, more powerful chemo “cocktail.”

Pals recuperating from challenging surgeries are making plans to begin the new year with improved strength and stamina.

Pal families who have lost a loved one are extending themselves to help other families and to begin new traditions.

As we prepare to celebrate Hanukkah and Christmas we look ahead to the New Year with renewed courage and enthusiasm for fighting the cancer beast!

Cancer cannot control our holiday spirit!

 

This essay is dedicated to all my fellow cancer warriors, Christine F Mike H, Charlotte H, Andy N, Josh O, Robert R and to the Pal families around the world.

 


This essay is an excerpt from “Where the Red Tailed Hawk Flies: Cancer Can’t Defeat Us!” by Gabriella Graham

Copyright © 2011 by Red Tailed Hawk Publishing/All rights reserved.

www.wheretheredtailedhawkflies.com

 
 
_ In Support of the Nomination for Dr. David L Bartlett as recipient of the Leo Criep MD Excellence in Patient Care Award 2011

“As both a cancer patient and an advocate for cancer patients and their families, I have had the opportunity to travel throughout the United States to interview surgical oncologists regarding my own case, as well as the cases of my fellow patients.

This experience has provided me with opportunities to interact with these specialists and to be treated by several of them.

For a variety of reasons, I have determined that Dr. David L Bartlett is the most outstanding physician, as well as surgical oncologist, that I have ever had the privilege of knowing.

As a patient and an advocate, I examine many factors in selecting a surgeon for my personal care, or one that I would recommend to my fellow patients. David Bartlett excels for his skills as a surgeon, his knowledge of our rare disease,  and his ability to coordinate and “lobby” other specialists to work together for the benefit of cancer research.

One of the qualities that distinguish Dr. Bartlett from the majority of his international colleagues is his willingness to listen to patients, to hear their needs, hopes and fears, and to address their concerns frankly, with compassion.

Dr. Bartlett listens; he doesn’t lecture and overwhelm patients with bravado promises of cures or frightening scenarios of complications.

Time and time again, my fellow patients relay to me how much they appreciate Dr. Bartlett’s calm, unhurried and reassuring manner of responding to their questions. Dr. Bartlett treats patients as human beings, not as potential statistics.

In spite of his brilliance and international renown as an exceptionally skilled surgeon, Dr. Bartlett remains modest and does not boast about his many accomplishments. This factor alone endears him to his patients and renders respect and admiration from his colleagues in the medical community.

Regarding my personal experiences as Dr. Bartlett’s patient, due to the complexity of my case and medical history, I was declined for surgery by all of other most experienced surgeons at major cancer treatment centers across the United States, and had been referred to hospice, when I met with Dr. Bartlett for the first time.

The fact that I am still here today is nothing short of a miracle. The senior patriarch in the treatment of my rare cancer, who would not operate on me, now describes me as “the little miracle” … a miracle that never would have occurred without the skill, confidence, and brilliance of Dr. David L Bartlett.

 


Copyright © 2011 by Gabriella Graham, Patient

 
 
_ Pioneers in Cancer Treatment

This morning I talked with a caregiver whose father has agreed to be treated with an experimental chemotherapy in an attempt to halt the rapid progression of the cancer that has challenged him for months. I commented to the caregiver that I believe his dad is courageous in agreeing to be treated with the new therapy, especially in consideration of the possible side effects of the treatment.

The son responded that his father is feeling anything but courageous. “Truthfully, Dad is distressed and uneasy about this new treatment. He has become suspicious of the doctors and wonders if they are using him as a guinea pig to test this new therapy.”

Who among us has not felt this way, even if just for a moment, when considering the pros and cons of established medical treatment, let alone, new medical therapies?

On one hand, we patients are optimistic that a new treatment will arrest and possibly eradicate our disease. On the other hand, as educated patient/consumers we read the “fine print”, hear rumors of what might possibly go wrong, and perhaps increase the suffering that we are attempting to prevent.

Virtually everyone living today, who has ever been treated through modern medicine, has benefitted since our mother’s pre natal care, from what were initially experimental treatments. These treatments have been refined and improved through the centuries. Anesthesia, pain management, infection prevention, vaccination, diagnostic tests, etc, etc, have all been developed through experimentation. Therapies that initially are tested with laboratory animals, eventually move ahead to human testing, if they are deemed worthwhile.

Since we have all benefitted from tests that were conducted on patients before us, we may consider it to be part of the human responsibility to also participate in new tests, if we are inclined to do so. We ask ourselves, “Do the risks outweigh the benefits?” “Do I have other choices?” “What are the consequences of me accepting this therapy, or not accepting it?” Sometimes we feel we are caught between a “rock and a hard place” especially when our options are limited.

How much does our perspective affect the way we consider the risks and benefits of new therapies? Do we see ourselves as “guinea pigs”, as helpless laboratory animals, or as pioneers dedicating our bodies to science? Are we gamblers, taking a chance with a roll of the dice, so to speak? Or, are we warriors, attempting another stand, risking possible defeat, or the bounty of improved health?

For those of us who have experienced years of medical treatments, surgeries, chemotherapies and the gamut of diagnostic tests, whether we realize it or not, we have contributed to the teaching of countless young physicians, nurses, researchers and medical technicians who have observed and treated our medical cases, both with “conventional” methods and new therapies. Yes, our bodies, are tested and used to educate healthcare professionals. In turn, the knowledge gained from our surgeries, and our medical care in general, is used to create medical therapies to aid patients in the future.

Just as we have benefitted, and our lives have been extended from the contributions of patients that were treated before us, so will future patients benefit from the medical care we receive today!



Articles posted in “PMP Pals” and on www.pmppals.org are written from the perspective of patients and family caregivers and are not intended to substitute for professional, licensed legal or medical advice. Each patient’s case is unique, therefore individuals should seek the counsel of their own healthcare providers. Copyright © 2012 by Gabriella Graham/PMP Pals’ Network. All rights reserved. Visit us on the web at www.pmppals.org