Many abdominal cancer patients discover varying degrees of digestive distress during the weeks and months following surgery.

Although appendix cancer, colorectal cancer and pseudomyxoma peritonei patients may experience similar CRS including the partial or total removal of particular segments of the digestive system, each patient is truly unique.

Nausea, diarrhea and bowel obstructions are the most common post operative digestive problem that patients (and their family caregivers/spouse) voice concerns about.

Indeed, these are serious symptoms as they can contribute to weight loss, malnutrition and painful blockages (obstructions.)

The PMP Pals' Network has posted numerous articles on the topic of obstructions and their prevention.

Likewise our NUTRITION link provides a variety of resources and menu plans with those patients who experience special needs, among them, low fiber, lactose intolerance and malabsorption diet plans.

We suggest that:

1. patients schedule a consultation with a licensed, clinical nutritionist to develop a personalized diet plan, after providing the nutritionist with a copy of the patient's operative report(s) in order for the nutritionist to be made aware of the specific segments of the digestive system that have been removed/altered and

2. patients maintain a daily "food diary" by noting any food or beverage they consume during a 24 hour period, and maintaining this diary for at least one week at a time.

"Diaries" may be simply maintain on a memo or note pad. By use of a food diary, the patient can note when digestive distress (ie nausea, diarrhea, obstructions, etc) occur, then can "track" back to what they have consumed (food or beverage) during the past hour, day or past few days.

For most patients, the food diary quickly becomes a helpful tool in determining which foods and beverages are tolerated well, and which may be problematic.

Patients should note that foods or beverages which are not well tolerated during the early stages of post operative recovery, may eventually become well tolerated.

Likewise, in the future, foods that are initially  well tolerated by some patients, including fibrous foods, may problematic in the future if scar tissue/adhesions occur.

As with any medical symptom, always discuss changes in your symptoms, which your licensed healthcare professional.


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 2011 by Gabriella Graham/PMP Pals' Network/All rights reserved. Visit us on the web at www.pmppals.org
 
 
PREVENTING FALLS & BROKEN BONES:
Safety Tips for Patients & Family Caregivers

The preventing of falls is particularly important for patients recuperating from surgery and those experiencing malnutrition. Patients with osteoporosis are especially vulnerable to falls resulting in broken bones. Gastrointestinal cancer patients, suffering from malnutrition, are at risk for osteoporosis at any age.

Falls, leading to fractures, can be caused by:

environmental factors*,
impaired vision and/or balance,
chronic diseases that impair mental or physical functioning,
medications, including pain relief, sedatives and antidepressants.
alcohol (alcohol and certain medications do not mix well and may result in dizziness and loss of balance.)

*Tips to help eliminate environmental factors leading to falls include:


Outdoors

•During recuperation, or whenever needed, use a cane or walker to increase stability.
•Wear rubber-soled shoes to improve traction.

Indoors

•Keep rooms clutter-free, especially the floors.
•Mop up floor spills. Highly polished floors can become particularly slippery if wet.
•Wear supportive, low-heeled shoes.
•Avoid walking in socks, stockings, or slippers. Use footwear with "skid-proof treads."
•Carpets and area rugs should have skid-proof backing or be tacked to the floor.
•Stairs should have handrails on both sides. Stairwells should be well lit.
•Install grab bars on bathroom walls near tub, shower, and toilet.
•Use a rubber bath mat or appliques in shower or tub.
•Keep a flashlight with fresh batteries beside the bed.
•Carry a cordless or cell phone in your pocket.
•Don’t rush to answer the phone or open a door. Callers and visitors can wait!

For more information on this, and other home safety articles, visit www.pmppals.org and subscribe to our weekly e-newsletter.



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. All patients are individuals with unique cases. Patients should seek the counsel of their own healthcare providers regarding their specific case and needs. © 2011 by Gabriella Graham/PMP Pals’ Network/All rights reserved. For more information, visit us at www.pmppals.org where “We have HOPE for YOU!”
 
 
Digestion and Nutrition: Obstructions & Blockages

Cancer patients may experience obstructions and blockages prior to, and/or following, surgery. Obstructions may affect patients experiencing gastrointestinal disorders/diseases for a variety of reasons, among them tumors, adhesions, and often, as a result of dietary choices. Due to the challenges caused by obstructions, patients should consult with their own physician specialist and/or a registered dietician to review their specific needs. Here is a list of general* guidelines.

Symptoms of obstructions:

Severe abdominal pain
Nausea, lack of appetite
Vomiting, including projectile vomiting
Bloating, in ability to have a bowel movement

Who is prone to obstructions?

Ostomates
Patients affected by adhesions, scar tissue and/or tumors
Patients who are bedridden, and/or who require particular medications

Physical contributors to obstructions:

Diet
Aging
Tumors
Adhesions
Scar tissue
Lack of physical exercise
Medication especially narcotics prescribed for pain and some chemotherapies

Dietary contributors to obstructions:

Those prone to obstructions, should approach fiber dense foods with caution or avoid* altogether:

Nuts and snacks, including popcorn hulls,etc,
Fibrous fruits or fruits with skins and/or seeds, ie grapes, raisins, citrus membranes, pineapple, etc,
Fibrous vegetables, raw or undercooked vegetables ie artichokes, cabbage, carrots, celery, corn, lettuces, etc.
Other foods that may move more slowly through the digestive system including meat products, beef, poultry, etc.

To avoid obstructions caused by diet:

Chew foods thoroughly
Use a commercial stool softener*
Drink adequate amounts of water
Add a fiber supplement to your diet*
Increase physical exercise*

Consult with your physician specialist and/or a registered dietician to review your specific needs.

Articles posted in “PMP Pals” are written from the perspective of patients and their family caregivers and are not intended as a substitute for professional medical or legal advice. Patients should seek the counsel of their licensed, healthcare professionals.
Copyright© 2011 by Gabriella Graham/PMP Pals’ Network/All rights reserved.
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What Patients Want Their Doctors to Know
(How to Improve the Outcomes of Medical Treatment through Improved Communication) Presented by Gabriella Graham, Patient Advocate
 
Recently the PMP Pals’ Network asked our fellow patients to answer the question, "What do you want from your surgeon?"

It goes without saying that patients want surgeons to provide the highest quality of state of the art care. Among the participants in the PMP Pals’ Network, those patients who seek treatment from experienced specialists, generally feel confident they are receiving the best care possible for the treatment of peritoneal surface malignancies.
 
Therefore, with specialized treatment being a "given", fellow patients responded to our question by focusing their attention on one major factor...communication!

Patients and their caregiving spouses, provided specific requests for improved communication skills, including those:
 
1. between physicians and patients and
 
2. among physicians and their colleagues in the medical profession.

Communication is of utmost importance, as it may affect the outcome of any medical procedure.
 
Patients seek:

1. improved "bedside manner" from their primary surgeons and residents

2. more detailed (“frank”)  information in preparation for the post-operative experience, including post op nutrition and changes in bodily functions

3. consistent communication between surgeons, their colleagues and hospital residents
 
4. inclusion in the decision making process, including when/how the patient will be released from the hospital

5. establishment of communication with patient's "hometown" PCP in developing appropriate post op follow up care  

By improving communication between patients and healthcare providers, we may be able to experience fewer post operative complications, reduce re-admittance to the hospital following initial discharge, and expedite the recuperation process.

First Impressions: What image does your office staff project?

Patients are influenced by how your staff communicates before they even meet you!

How easy or difficult is it for a patient to schedule a pre-op consultation with you? Are there long delays for scheduling appointments?

Does your receptionist/officer manager convey a friendly and welcoming attitude, or does she frighten patients away with personal speculations about what treatment may or may not involve?

Here’s a quote from one patient: “The receptionist was so abrupt when I inquired about a telephone consultation, I decided not to pursue the matter and called another surgeon’s office instead. I decided if the first surgeon’s staff was so rude, I would not want to experience more episodes like that if I eventually became his patient.”

What is the patient’s first impression of you?

Understandably, patients enter your office under stress, feeling very anxious. Many believe their future lies in your capable hands, literally.  Given your hectic schedule, how can you set the tone enabling the patient to relax and listen to your medical treatment proposal?

Small gestures can make a big impression.  Although cultural preferences vary, generally a warm handshake or a pat on the back may go a long way in putting patients at ease. Patients rate eye contact and listening to their concerns and questions, high on the list of communication skills they seek in a surgeon. 

Patients listen to physicians who listen to them!

Nomenclature: Treat the disease, treatments and the patients with respect

Set the tone by using language conveying respect for your profession and the patient’s diagnosis. Don’t use colloquialisms to describe symptoms, disease or treatment, or that elevate the patient’s anxiety even further.

Mucin is not “Jelly Belly.”
CRS is not “Mutha of all Surgeries.” (MOAS)
HIPEC is not “Shake and Bake.”

If surgeons want patients, the medical profession and research funding sources to take you and your work seriously, if you want to educate the public and share “awareness”, use appropriate and respectful medical terminology.

Addressing new patients

Patients request that they be addressed using formal titles, i.e. Mr., Mrs., Miss, etc. during initial meetings, especially when being interviewed by residents.

Evaluating a patient: How well do you know your surgical candidate?

Pre Op interviews

Naturally, as a surgeon, you will assess the patient’s overall ability to successfully recuperate from medical treatment. During your evaluation, you must also inquire about these two important factors that may affect the recuperation outcome:

1. the patient’s ability to afford medical treatment, and follow up care,
2. the patient’s personal support system for recuperation from medical treatment

Can the patient afford medical treatment?

Patients are often hesitant to tell you, but concerns over the affordability of treatment may rank only second to that in their level of anxiety about their prognosis.   While explanations of the financial aspects of treatment are delegated to other members of your staff, you may gain greater insight into the patient’s ability to pursue the treatment you prescribe, if you have more information about his/her financial concerns.

Does the patient have health insurance? Is the treatment you are recommending, including HIPEC, covered by that insurance? Have you advocated the establishment of HIPEC as the standard treatment of choice for the patient’s specific diagnosis?

If you recommend HIPEC as the treatment of choice, then you must be able to communicate in defense of, and support the efficacy of the treatment plan to all health insurance providers.

Can the patient afford post-operative monitoring, including commuting to your treatment center?

Is the patient employed? Can the patient afford to be away from work for at least two months? Does the patient have adequate “medical leave” coverage? Does the patient have a family to support?

Many patients scramble and accumulate more stress from attempting to accumulate/borrow/raise money for medical treatment and co-payments than the stress from their actual diagnosis! Some patients mortgage or sell their homes in order to afford medical treatment.

Financial worries and obstacles may affect at patient’s outcome from surgery/treatment.

Does the patient have adequate post op support at home?
Does the patient live alone? Does the patient have a community of support at home?

Does the patient have a responsible, capable and helpful family caregiver? Does the caregiver appear “involved” in serving as an advocate for the patient? Or is caregiver fearful, timid, disengaged, perhaps even angry with the patient for being ill?

Who are your colleagues?

If the patient is an appropriate candidate, and scheduled for medical treatment, advise the patient and the caregiver/spouse of the names of all of your colleagues who may be checking in on the patient, including during your days off.

If your colleagues have equal authority and can decide when your patient will be released, advise your patient of this fact, i.e. “Dr. Smith and I rotate weekends off. While I am away, (s)he has the authority to order pain medications/release you from the hospital, etc.”

Whenever possible, introduce your colleagues, including your residents, to your patients. Due to conflicting schedules, it may not be possible to make personal introductions, but at least provide the patient and the caregiver/spouse with the names of your associates, so they won’t feel bewildered when new faces appear at their bedside.

Post Op Expectations

Patients seek detailed communication from their surgeons in anticipation of the post-operative experience

Surgery is the primary treatment for most of your patients, yet, even those who have experienced general surgeries prior to CRS/HIPEC are not fully prepared for the challenges they will experience during the first several weeks, post op.

The most common concerns patients say they wish they had understood prior to surgery are:

1. Sudden and often dramatic weight loss, accompanied by temporary or permanent loss of appetite

2. Unanticipated changes in bowel elimination process, lactose intolerance, digestive disturbances

3. Length of time needed to regain stamina, ability to return to work (longer than anticipated)

Define “normal” and/or “full recovery”

Patients have discovered they define “full recovery” and the length of time needed before they feel “normal” again to differ from that perceived by their surgeons.

Here’s a quote from one patient: “Specific definitions are important during the pre-operative interview. My surgeon told me it would take three to four months before I would be ‘back to normal.’ I interpreted ‘normal’ to indicate that I would be able to work full time and resume all typical daily activities. As it turned out, the surgeon really intended ‘normal’ to be a ‘reasonably functioning level’ (still rather vague!) and that I could ‘possibly’ return to work.”

Another patient offers this reflection: “My biggest dissatisfaction with medical communications came after the surgery. I wish my surgeon had been more informative about the recovery process, including the physical after effects of the surgery. A more detailed explanation would have helped me to adjust to the experience better and would have enabled me to keep a positive attitude.”

There needs to be clear communication between surgeon and patient to define important, life altering, post op changes.

Improve Communication with Colleagues within the Hospital

Patients and caregiver/spouses note post-operative communication gaps among colleagues, including residents. The need to improve communications among medical colleagues and get everyone “on the same page” is the most common request from patients and their families.

Here’s a quote from one spouse: “A team of doctors working together not only needs to communicate well with one another but with the family, as well. You can be the most talented surgeon in the world, but if you lack good communication skills you will not be as effective.”

From another caregiving spouse: “Two specialists operated on my husband on the same day, yet they presented me with different post op scenarios for his prognosis. We wish they had consulted with one another at the end of the surgery to corroborate their summations.” 

Patients want to know, and want the staff to have, clear communication about “who is in charge” when the primary specialist is unavailable.

One patient offers this personal observation: “Instructions/authority for overnight, weekend and holiday pain management should be established before the primary surgeon leaves the hospital premises. There should always be someone on staff 24/7 with the authority to approve pain management, and other, requests.”

Communicate who is “in charge” before you leave the hospital for the day.

Transitioning from the Hospital to Home

It is common for patients to travel long distances to receive the specialized care provided at your cancer treatment center. Due to the complexity of specialized treatment, and additional specific support needed for some patients (i.e., those with ostomies and extensive weight loss, etc.) it is imperative that communication be established between a physician/P.A./case manager, and the patient’s local PCP prior to discharge from your hospital.

A printed outline of post op instructions is not sufficient instruction for a patient to carry home to establish adequate post- operative care and monitoring during recuperation.

Here’s how patients describe the transition between their discharge from their surgeons’ care at specialized cancer treatment centers, to their release home:

“When I was released from the hospital, I felt uncertain and insecure, and wished I had been given much more information about what to expect about recuperating at home.”

“My biggest disappointment with the medical treatment experience was the lack of communication or instructions after I was sent home.”

“I experienced a total communication disconnect between my specialist team at the hospital and my family healthcare provider back at home.”

Refer to licensed dieticians

As previously mentioned, weight loss and appetite suppression are of major concern to many post op patients and their caregiving spouses. The “standard” canned liquid beverage supplement that surgeons generally recommend to patients may not be helpful to lactose intolerant post op patients.

Therefore, communicating a referral to a licensed dietician, specializing in the care of patients with gastrointestinal/colorectal disorders, will be appreciated by patients seeking specific guidance.

When the news isn’t good…you are responsible for information about prognosis

Predictions of a patient’s prognosis should be delivered by you, not your receptionist/office manager, nurse or a resident. Patients have established a personal relationship with you and therefore look to you for direction regarding their prognosis. They do not want to hear speculations offered by anyone else.

What if the patient appears to be inoperable?

Some patients appear inoperable, perhaps even untreatable. If you are unable to treat a patient (and patients tend to respect and appreciate surgeons who are straightforward about this matter) then what options can you offer the patient?

All patients have options and they want to hear them from you, with compassion, not from your P.A., and not from a social worker. “Inoperable” patients have options, among them are:

Referral to another surgeon,
Possible chemotherapy or other treatment,
Palliative care, and
Hospice care.

All patients deserve to be able to make sound choices after they have examined their options. Patients realize that doctors can’t cure everyone. However, physicians can help “heal” the trauma of a poor prognosis by offering/educating the patient about humane options.

Offer options to all patients.

“Awareness” begins with you, the physician!
Communicate to Educate the Medical Profession at Large

Is there a better way to educate our local medical doctors (internists, surgeons, etc.) to refer patients directly to you, the specialist?

Too often patients undergo debulking by a local general surgeon, before ever learning about their options for specialized treatment and/or referral to a specialist. As recently as last week, our office received a call from a 40 year old mother of three in the United States, newly diagnosed with appendiceal cancer, following an appendectomy the previous week. Her pathology report clearly listed Pseudomyxoma Peritonei, yet she was scheduled for a “follow up, suctioning of mucin and exploratory surgery” with her local hometown general surgeon! (Fortunately, she located www.pmppals.org and was referred to sources our listings of surgeons and specialists.)

“Awareness” is a common buzz word within the cancer community. Due to the vagueness of many symptoms, combined with the rarity of the diagnoses you treat, awareness begins with you educating your fellow healthcare professionals from RNs and PAs to OB/GYNs, general surgeons and radiologists, in recognizing the often subtle signs of peritoneal surface malignancies.

Specialists are in the optimal position to communicate with, and educate, the general medical profession about the importance of:

1. recognizing symptoms, and

2. referring to specialists for appropriate and timely medical treatment.

Patients get the last word! Now it’s our turn to communicate!

Lastly, as patients and family caregivers, we want to communicate something to you!

We want to thank YOU for the time, devotion, sacrifices, that you, your staff, and your families have devoted to treating us and our loved ones!

We realize you could have chosen a less demanding field of medicine to pursue; we are thankful you chose to treat the rare diseases that are so devastating to us.

We observe that you are overworked and underpaid.

We are thankful that your spouse and your family are willing to sacrifice their time at home with you, so that you can dedicate that time to treating us.

We realize that the eighteen hour days spent focusing on our care means that days go by without you even seeing your own children during their waking hours, thus enabling us to live longer, so that we can raise our families.

We thank you for comforting us when nature works against us, and for celebrating with us when treatment exceeds our greatest expectations! Our victories over cancer are your victories too, as without your dedication, expertise and sacrifice, our victories would not be possible!

Articles published by the PMP Pals’ Network are written from the perspective of patients and their family caregivers and are not intended to substitute for licensed, professional legal or medical advice. Individuals should seek the counsel of licensed professionals regarding their specific healthcare needs. Copyright © 2011 by Gabriella Graham/PMP Pals’ Network/All rights reserved.  Contact us via pmppals@yahoo.com

PMP Pals’ Network: 1998-2011
Providing Resources, Referrals and Support for Patients and their Families in 48 Countries.Visit us on the web at www.pmppals.org


 
 
One of the most common questions we receive is…

How shall I select a surgeon specialist?”

In some regions of the world, we begin to answer this question by noting whether or not any surgeons specializing in Appendix Cancer, Pseudomyxoma Peritonei and related diseases, exist, as many countries are lacking medical professionals who are knowledgeable in this field. Indeed, there are entire continents lacking any specialists in the treatment of cancers originating in the Appendix, whatsoever.

In cases such as these we refer patients to specialists in nearby countries, whenever possible. Experienced surgeons do exist throughout western Europe, Australia, Canada and the United States, in particular.

Within the United States, patients may tend to seek a surgeon specialist based on geographic location. However, a more “locally based” specialist may not necessarily be the best choice for the patient. There are many detailed factors to consider when selecting a surgeon.

Newly diagnosed patients are tempted to seek opinions from other patients regarding the favorite surgeon(s) of the experienced patient. However, it is only natural that veteran patients are “prejudiced” in favor of their own particular surgeon.

It is the opinion of this author that newly diagnosed patients should interview two or three surgeon specialists in this field,and develop their own opinion, prior to seeking suggestions from fellow patients.

There are a variety of considerations to be explored. Here a just a few considerations...

What is the patient’s rapport with the surgeon/specialist?

What can the surgeon accomplish for the patient?

Can the surgeon meet the patient’s expectations?

Is the surgeon’s treatment plan covered by the patient’s healthcare insurance?

Who will monitor the patient daily, following surgery? The residents? The surgeon’s P.A. (Physician’s Assistant), the surgeon him/herself?

How experienced is the post operative nursing staff (this is a very important question!)

What is the “nurse to patient ratio” post operatively (this is a very important question!)

Does the surgeon have a quota of HIPEC procedures to perform every month/quarter?

These are just a few of the important considerations that one must examine prior to selecting a surgeon/specialist in the treatment of Pseudomyxoma Peritonei.

A more detailed and comprehensive list is included in the PMP PalsNetwork Handbook: Preparing for Surgery and in the Summer 2008 issue of the “PMP Pals’ Newsletter” article titled “What Patients Need to Know.”





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 2011 by Gabriella Graham/PMP Pals' Network/All rights reserved. Visit us on the web at www.pmppals.org

 
 
Not Cancer Free? Adjusting to the “new normal!”


What happens if you aren’t cured of cancer?

What happens if you are living with cancer as chronic illness, like diabetes or heart disease?

Are you in the “watchful waiting” mode, monitoring tumor stability vs tumor growth, sometimes on chemo, sometimes off, tweaking treatments throughout the year?

Why are some patients cancer free, and therefore, no longer technically “patients”, while others of us continually keep our eyes peeled for news of emerging clinical trials?

How does the chronic cancer patient cope?
How do we adjust to the “new normal?”

As I write this from the rugged and rural setting of Toro Park, along the Central Coast of California, I am watching a muscular middle aged man maneuver what appears to be an all-terrain wheelchair. The chair is not electric. It is “powered” up the incline of the park trail by the man’s own two arms.

He’s wearing stylish athletic apparel and, from all appearances, looks fit, except for the lower half of his body, which is paralyzed.

Shall I approach him and ask him how he has adjusted to what appears to be his “new normal?”

Is his condition the result of an auto accident, a spinal tumor, or some other medical calamity? Prior to his personal catastrophe, did he jog along these same trails that he now follows in his wheelchair? Was he an endurance runner, or perhaps an off trail bicyclist? What liberties have been sacrificed to confine him to his wheelchair?

Or, does he feel confined at all?
Has he learned to live with this “new normal” as I have?

Is he here to simply relish being alive on a brisk fall day, to admire the contrast of the brilliant gold, yellow and crimson adorned Sycamore branches extending themselves to the cloudless, bright blue sky?

Is he here to feel the warmth of Indian Summer sunshine on his face, and to hear the popping sounds of acorns dropping from the Oaks?

Perhaps he is here to witness the efforts of the industrious red headed woodpeckers and squirrels, storing their bounty for the winter months.

We may sacrifice many freedoms when we have cancer, but we must not relinquish our rights to discover and embrace the simple joys of life, whether healthy or chronically ill.

The simple joys of life are priceless!



Dedicated with love to David H, David M, Robert R, Tony S, Brian S, and all my chronically “ill” Pals who savor life!




Articles post 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 medical or legal advice.Copyright © 2010 by Gabriella Graham/Red Tailed Hawk Publishing/All rights reserved. Learn more about rare cancers at www.pmppals.org

October 26, 2010/Red Tailed Hawk Publishing
 
 
Dental Care for Cancer Patients, Part I

Did you know that cancer patients have special needs for our dental care?

Before you schedule surgery, chemotherapy or prepare for any period of time during which you may not be able to maintain your normal daily hygiene, schedule an exam with your licensed, professional dentist and dental hygienist. This is especially important if you will have an “NG tube” following surgery.

Nutritional absorption begins with chewing. Gastrointestinal cancer patients are often not allowed to eat for extended periods following surgery. A decrease in chewing may cause an increase in cavities and periodontal disease, as chewing can remove much of the biofilm and plaque that develops on our teeth.

Xerostomia, or dryness of the mouth, may be common following surgery (with and without the NG tube) and/or chemotherapy. Xerostomia is uncomfortable and may be problematic because saliva flow is important for maintaining healthy teeth and gums. Saliva cleanses teeth and gums all day long. A decrease in saliva may result in an increase in cavities and gum disease.

Here are suggestions to help combat postoperative dental disease:

Rinse your mouth with water often throughout the day. If you have an NG tube, you must spit the water out.

Use an extra soft toothbrush throughout the day, including for dry brushing. Your toothbrush must be kept immaculately clean and as germ free as possible.

Flossing helps keep the gums healthy and reduces bacteria in the mouth.

Ask your dentist whether custom fitted fluoride trays would be helpful. Fluoride treatment requires little effort when patients are weak and unable to maintain their normal daily hygiene routine. The trays are worn for as little as five minutes per day. Fluoride strengthens the teeth and kills bacteria.

Relieve Xerostomia/dry mouth symptoms by using:

Xerolube, this “artificial saliva” is available as an OTC spray,

Biotene Oralbalance toothpaste and lubricating gel is alcohol free (non drying) and is available OTC,

Glycerol swabs appear to be giant “Q tips” treated with soothing glycerol and lemon, serving as a temporary substitute for a toothbrush,

Sugarless gum, if permitted, activates the salivary glands and helps remove the biofilm that harbors bacteria.

As with any other medical condition, patients should consult with their licensed health professional regarding specific individual needs.





Articles posted in PMP Pals and on www.pmppals.org are written from the perspectives of patients and their family caregivers and are not intended to substitute for licensed, professional legal or medical advice. Patients should seek the counsel of their licensed healthcare professionals. Copyright © 2011 by Gabriella Graham/PMP Pals’ Network/All rights reserved. Production of this article has been sponsored by Leon Cooper, DDS.
 
 
Cancer Patients Can Outlive the Statistics!

When our physicians tell us we have been diagnosed with cancer, one of our initial reactions is to ask “Can I be cured?”

Certainly, a cure is the goal we seek! We strive to be completely disease free, as quickly and painlessly as possible!

What if a cure is not available for our particular case? What are our options?

The next initial thought may likely be “Will I die?” followed by “How long do I have to live?”

For many of us diagnosed with Appendix Cancer, Pseudomyxoma Peritonei or a wide variety of cancers and illnesses, our status lies with neither rapid cure nor a rapid demise.

Our future lies in living with a chronic illness.

Let’s focus on the phrase “living with” as in living to our fullest capacity, accepting the “new norm” and striving for optimal quality of life!

Some patients who are not disease free, yet who don’t require immediate treatment, are advised by their physicians to “watch and wait” via periodic medical monitoring. Many patients find the “watch and wait” method to be frustrating.

“I have to do something, (ie chemotherapy, surgery, diet, change of lifestyle) I can’t just wait for the cancer to start growing again!” For logical reasons, cancer becomes an obsession, even for patients who are in remission.

In the meantime, while we obsess about our cancer, we may have other health problems brewing that are going unnoticed! In many western societies, heart disease continues to cause more physical damage, leading to death, than does cancer! Perhaps while “watching and waiting” we should take stock of our entire health status and enlist personal improvements to the best of our abilities.

In the cases of Pseudomyxoma Peritonei, Appendix Cancer, and indeed many cancers, survivorship in western societies has increased/improved during the past decade due to a variety of factors, among them earlier diagnosis and improved medical care.

Obviously, the goal of every patient preparing for surgery is for that surgery to be curative, not palliative. However, for those of us who are living with disease, we are optimistic that our odds for continuing to live will increase with each passing year!

Yes, it is true that the stresses of aggressive extensive surgeries may place enormous challenges on the body and the psyche. To pursue aggressive surgery is a personal choice, to be carefully weighed by each individual and that choice is not to be taken lightly.

In consideration of any medical treatment:

-educate and inform yourself to the best of your ability,
-don’t be intimidated by fearmongers, including those who post on “message boards”,and
-understand your own physical and emotional limits.

Whether you decide to pursue medical treatment or not, don’t apologize to anyone for your choices; you know your own body and mind and know what you are capable of handling.

If you do choose to pursue surgery and treatment, or select to "watch and wait" we invite you to participate in the PMP Pals’ Network and to be assisted by a Pal Mentor. Visit us at www.pmppals.org

Read our handbooks, including “Preparing for Surgery” and “Physician Consultations.” We are here to help you!

We have HOPE for YOUR future!





Articles posted in PMP Pals and on www.pmppals.org are written from the perspective of patients and their families and are not intended to substitute for licensed professional legal or medical advice. Patients should seek the counsel of their own licensed healthcare providers regarding their specific needs. Copyright © 2011 by PMP Pals’ Network/Gabriella Graham/All rights reserved.