Restoring Hope With Memories and The Knighton Mesothelioma Research Fund

Restoring Hope With Memories And The Knighton Mesothelioma Research Fund

Often times we see tragedy progress into hope, but the stories are always heartening and the story of Chris Knighton and the loss of her husband Mick Knighton does just that; brings tears to your eyes and empowers you at the same time.

Chris and Mick Knighton were a happily married, loving couple with children and grandchildren that they shared their joy for life with. In 2000, Mick had been experiencing difficulty breathing and the couple visited their doctor to investigate. Once they received the diagnosis, they were both shocked and saddened. Mick was diagnosed with mesothelioma and only 6 months to live.

Mesothelioma is a terminal cancer, caused by exposure to airborne asbestos, which can affect the lining of the stomach or, as in Mick’s case, the lining of the lungs (known as pleural mesothelioma). Due to the advanced nature of Mick’s condition upon diagnosis, there were no treatment options available, only means to help make him more comfortable.

Mick and his wife, Chris, were shocked to learn of the limited research and information available on mesothelioma and the family was even more surprised to learn that Mick had been exposed to asbestos during his time serving in the Navy, almost 50 years prior to his diagnosis. The Navy took no responsibility for Mick’s illness. This realization inspired Chris to launch a fundraising campaign, both to honor her husband, who died 7 months after being diagnosed with mesothelioma, and to fund more research into this aggressive disease and new treatment options.

Out of the Knighton family’s tragedy was born the Mick Knighton Mesothelioma Research Fund, which raises awareness of mesothelioma and money for mesothelioma research. In 2002, Chris Knighton swore that her husband’s death would not be in vain and the thousands of other people exposed to asbestos would be recognized as she launched the fund.

In addition to the Mick Knighton Mesothelioma Research Fund, Chris launched the Snowdrop Fund that makes it easy for others to conduct fundraising efforts, as tributes to loved ones lost to or suffering with mesothelioma. The Knighton Mesothelioma Research Fund helps to organize and promote Snowdrop Fund programs. It is this families hope that the combined efforts of both foundations can bring greater hope for the thousands of families who will be faced with mesothelioma diagnosis in the future.

Greater Research for Environmental Asbestos Exposure

For years mesothelioma concerns have been focused on the occupational environment, for those exposed to asbestos materials in the workplace and the people these workers were in daily contact with outside of the workplace. Only recently have researchers started to focus on asbestos fibers in the general environment and they are finding that asbestos is affecting more than just workers exposed to airborne asbestos.

Asbestos is a known carcinogen and is recognized for contributing to mesothelioma, a cancer affecting the pleural and peritoneal linings of internal organs and asbestos lung cancer. Mesothelioma is distinct in the cancer family as it originates from no other factor than exposure to asbestos materials. As it was once believed this exposure was only happening in the workplace, it is now becoming apparent that there are risks of exposure in our general environment. An individual can be exposed to asbestos when living with asbestos workers, has regular exposure to soiled work clothes from an asbestos worker, environmental exposure in neighborhoods of industrial sources, and passive exposure from buildings containing asbestos materials.

New research is being conducted to determine the effects of environmental asbestos exposure. With the help of the Mesothelioma Database, researchers have been able to study the geographical impact of environmental asbestos exposure. This research will help to determine the effects of airborne asbestos on people living close to industrial sources and naturally occurring asbestos mines and moving outward geographically to determine how much of a risk the asbestos is to residents of the next town. This risk mapping will expand mesothelioma diagnosis abilities and hopefully, allow for quicker mesothelioma treatment options.

10 Must-Know Tips for Mesothelioma Caregivers

Caregivers of mesothelioma patients are remarkable people. They are truly unsung heroes. Navigating the medical world of a mesothelioma diagnosis is a complex, overwhelming task, yet it is a job too many unsuspecting individuals are forced to do when a loved one is diagnosed with mesothelioma.

Hopefully you've never heard of mesothelioma and no one you know is ever diagnosed . It is a horrific cancer caused by exposure to asbestos that attacks the lungs, abdomen and heart. There is no known cure.

But for those brave souls that are unexpectedly thrown off track when a loved one is diagnosed with mesothelioma, here are 10 tried and true must-know tips for caregivers of a mesothelioma patient.

These tips come from the gathered knowledge of real people - wives, husband, children, parents - that have come face-to-face with the medical world of doctors, hospitals, chemotherapy, radiation, surgery and more. The common theme to each and every tip? Take control and be your own advocate! After all, both you and the person you love are the ones with the most at stake.

10 Must-Know Tips for Mesothelioma Caregivers

1. Bring a Notebook to Doctor and Hospital Visits
For each and every doctor or hospital visit, bring a notebook solely for the purpose of writing down all of your notes and questions. In fact, bring two. One for notes and one to gather the contact information of people you meet throughout the process (see Tip #10).

2. There Are No Stupid Questions
"Meso what?" Most people have never heard of the disease. Understanding how the cancer is attacking the body and the mesothelioma treatment options available is equivalent to learning a foreign language. Learn to be a good student of the disease and treatment process. Come to doctor appointments with a prepared list of questions. And remember, there's no such thing as asking too many questions.

3. Arm Yourself With Knowledge
Whoever said knowledge is power was right. When your loved one is starting treatment, get into the habit of making sure you understand exactly what is going to happen. What drugs are being used to combat the mesothelioma cancer? Why? What are the side effects? How should we cope with them? How long is the recovery to surgery? Don't be left in the dark.

4. Beware the Internet
That said, choose your sources carefully. Don't believe everything you read on the Internet about mesothelioma. "But I'm reading this on the Internet," you say. That's true, but there's a lot of mesothelioma information out there that is outdated or misleading. The Internet can provide you with lots of valuable information, but when it comes to medical information, get your answers from the experts.

5. Get to Know the Medical Staff
Once you begin the treatment process, get to know the people caring for your loved one. Watch and learn from the nurses. Talk regularly with the doctors. From the very beginning you need to set a tone of open, direct communication.

6. Be the Squeaky Wheel
Maybe it's not in your nature, but when your loved one is in the hospital, learn to be the squeaky wheel. If pain shots are coming late, tell the nurse. If the mesothelioma patient should have on compression boots after surgery and they don't, then don't leave until they do (this helps prevent blood clots). Remember, you ultimately have to take control and be your own advocate!

7. Roll Up Your Sleeves
Your job is hard, and there's so much work you're already doing. But if you feel comfortable, try to get involved in some of the hands-on tasks you've watched the nurses and doctors perform. Obviously you can't insert IVs and draw blood, but you can learn to clean wounds and plug and unplug the IV so your loved one can get up and walk around. Doing this will get you more involved and, hopefully, get you both home quicker.

8. When In Doubt, Call the Doctor
When you're away from the hospital or mesothelioma treatment center, you're going to be the full-time caretaker. No nurses. No safety net. Be confident. You can do it. No one loves this person more than you. Watch for fevers, infection, and change in appetite. But remember, when in doubt, call the doctor.

9. Take Care of Yourself
This may be the greatest challenge you face: taking care of yourself. It's hard to do but essential to making sure that you stay strong throughout this long and trying journey. So find time to rest. If you're at the hospital, ask for a reclining chair in your room so you can rest while your loved one sleeps. And don't forget to eat healthy.

10. Build a Support Network
Managing your life - let alone the mesothelioma diagnosis of a loved one - is hard enough. Don't try to do it alone. Reach out to family and friends. Throughout your journey you will meet other amazing people that are facing the same challenges that you face. Build a network of support and use it on a regular basis.

If you are a mesothelioma caregiver or patient and have questions, concerns, or just need to talk, help is out there. Get in touch with the Meso Foundation or contact the Mesothelioma Hope Center.

Are there different types of mesothelioma?

According to "100 Questions & Answers About Mesothelioma," there are three main types of mesothelioma: epithelioid mesothelioma, sarcomatoid mesothelioma, and mixed (also called biphasic mesothelioma).

Generally, when I speak with someone who has recently been diagnosed with mesothelioma, I ask the diagnosis type. Unfortunately, I have gotten some strange responses, including the “slow type” and the “good kind”.

I later learn that they are referring to epithelioid mesothelioma. Epithelioid refers to the cell structure or formation. The cells are of polygonal nature, meaning that all sides of the cell are connected or joined together. The cells are similar in shape, closely aligned or adjoining with distinct nuclei evident under microscopic examination.

Because epithelioid mesothelioma is considered to be the least aggressive but more responsive to treatment some physicians opine that if one is going to get mesothelioma it is the “best kind” to get. I disagree!!

Why? Because it gives the diagnosed person the impression that he or she has unlimited time to make a treatment decision. Often the diagnosed will take a wait and see approach. Think about this, while it may have taken 20, 30 or even 40 years for one’s mesothelioma to develop, it’s not going stop growing while you weigh your mesothelioma treatment options. I say to you, as gently as I can, there is no safety net of time.

Another subtype of mesothelioma is known as sarcomatoid mesothelioma. Sarcomatoid mesothelioma is complicated to diagnose. Pathological evaluation is difficult because the spindle-like cell structure and reaction to chemical staining mimic that of a sarcoma.

When a diagnosis of biphasic mesothelioma has been made it is likely that biopsies were taken from different parts of the tumor. Although Dr. Pass states that this type of mesothelioma makes up about 20% to 35% of mesotheliomas, I have seen higher percentages ranging from 40 to 60 percent. This may be because of the advances made in immunohistochemical analysis as well as the surgeon’s awareness of the diseased tissue and the need for harvesting multiple sections.

Remember, a proper diagnosis is critical to choosing the best mesothelioma treatment.

Lynn Collins has been helping mesothelioma patients and families for over 10 years. In this exclusive series she examines the book 100 Questions and Answers About Mesothelioma" by Harvey I. Pass, MD, Laura Roy, RN, and Susan Vento.

Welcome to the SimmonsCooper Mesothelioma Support blog

Welcome to SimmonsCooper's Mesothelioma Support blog, a place for patients and families to find information, news, and stories about mesothelioma, the rare cancer caused by asbestos. We hope this blog will become a place for new ideas, education, inspiration and making connections with others that have been affected by this horrific and preventable cancer.

So why a blog? Well, at SimmonsCooper we're very fortunate to have some amazing folks on staff. Not only are they extremely knowledgeable about mesothelioma and asbestos, but they're also passionate about helping others. As we develop this blog over time, we'll be asking some of those people to share that knowledge. We'll address the vast number of issues - medical, emotional and legal - that can wear so heavily on a family facing a mesothelioma diagnosis.

As always, we welcome your feedback, stories and participation in the conversation. This mesothelioma blog should be a collaboration of knowledge, ideas and inspiration. Together we can raise awareness about the dangers of asbestos exposure and offer hope to those that have been unfairly forced to suffer because of it.