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Building a Cancer Support Network

Updated on April 13, 2013

Introduction

Those who choose to take on the role of cancer fighter fall without exception into one of four categories. The Fallen, the Afflicted, the Unafflicted, and the Conqueror. I will explain in further detail who those people are, as well as explain how to establish a formidable cancer fighting network should you or someone you care about be diagnosed with this disease.

The Fallen

All of you are probably familiar in your lifetime with at least one person who bravely fought cancer before succumbing. I have been familiar with several. While their vessels have ceased to function, their work does not. They continue to play a vital role in the battle. They serve one or more functions: learning - those who have provided researchers with knowledge during their treatments and/or clinical trials. Inspiration to the other three types, that is self explanatory.

The Afflicted

This is a person who is either fighting active cancer, or is in remission. They also play a very inspirational role, both in the way they live, and in the way they fight. Anyone who is diagnosed with a life threatening or "terminal" cancer, and chooses to give their all to live and fight anyway, is one who has accepted a grueling task. These are the ones who most need our help. Our goal is to move all these people into the fourth type. They may also be donors, of their time, energy, and/or money. They can do this by participating in clinical trials, and also by donating their time and energy to raise money and awareness.

The Unafflicted

This person has never been diagnosed with cancer, but have accepted the stand beside the other three in the fight. They may have one or several functions. Like other types, they are also donors, of either time, energy, and/or money. They can be cheerleaders, providing encouragement and motivation to the Afflicted. While they have never carried the disease, they are also very brave in putting themselves at emotional risk. Fighting cancer can result in befriending one or many Afflicted in the process, knowing full well that some of them may end up becoming part of the Fallen. Without the Unafflicted, there would definitely be less Afflicted that fall into the last type of fighter.

The Conqueror

This person is a former member of the Afflicted. This person has had cancer, and has it no longer. They are not just in remission - they are cured. Truly cancer free. Cancer free is a phrase that is often thrown around too casually by doctors. The goal here is eventually to move every member of the living Afflicted to this type. While all types inspire the Unafflicted, the Conqueror usually serves as the most inspiration to the Afflicted. This is especially true if the Conqueror has defeated an exceptionally fearsome type of cancer. The Conqueror serves as a constant reminder to the Afflicted fighter that no type of cancer is terminal in every single case. They are living proof that you never know what can happen until you fight. And of course, the Conqueror can also fight in the same ways as the Afflicted and the Unafflicted.

Knowledge is power.
Knowledge is power.

Gather Knowledge From Other Survivors

Knowledge is power. I know it's cliche, but truer words were never spoken. If you do not understand the nature of the cancer you are dealing with, it makes it harder to fight. Beating the disease can mean more than just getting the right medicine. Every advantage counts. Many people assume that cancer patients should always get all the rest they can possibly get. Well, the right amount of rest is important no matter who you are, but did you know that getting the right amount of exercise can actually improve prognosis as well? The trouble can sometimes be finding out how often or how vigorous. Diet is also an important part of cancer fighting.

When I built a network of knowledge for my dad, the first thing I did was search for long term survivors of the type of cancer he had. I did this using google, and when I found names, I either found them on facebook, or did e-mail or phone searches. I asked them what type of medication they received or are receiving, and many questions about their daily life routine - what they eat, how much they exercise, what to expect as far as fatigue goes, and how they listen to their bodies. In certain aspects, you can learn information that is equally as valuable, and sometimes even more valuable, from long term survivors as you can from doctors. After all, these are the people who lived it, or are living it, and surviving!

Gather Knowledge From Other Doctors

Your own doctor will not be the only doctor willing to help you. Contacting and consulting via e-mail or phone other doctors, especially from hospitals that have a good reputation in fighting the type of cancer in question can also provide valuable insight. And you don't have to limit yourself to medical doctors. Contact researchers as well to get more information on upcoming potential clinical trials, as well as lifestyle advice.

Potential Experimental Treatments

Most cancers are heterogeneous - they don't only have one specific cause. As such, many of them also don't have only one treatment option. There are new clinical trials coming out all the time. Online is a great place to look for them, in the case that one of the standard treatments is not working, or the doctor does not think it is a good risk, or if the clinical trial looks like a better option to the patient.

Clinical trials usually have prerequisite conditions patients must meet before being accepted. They are almost always listed on the page. http://www.cancer.gov is an example of a site that lists trials around the U.S. Going to the cancer department page at a major hospital is also a good bet to find them.

Friends, Family

Family and friends might be willing to be enlisted to help you do the above research. Might they also be available to drive you to and from treatments? Some chemo drugs have an instant fatigue effect on the patient, so it might be tough for them to drive to and from treatments. If there is no spouse, or the spouse is unable to drive, that is a wonderful way you could help your loved one and be part of their cancer fighting network.

Also never forget the importance of just lending your ear for listening, and your mouth for encouragement. Cancer patients at various times can become very discouraged by their state. They have to want to fight. Ameliorating their mental and emotional state has the potential to go a long way in the battle.

Friends and family are powerful allies, both in health and illness.
Friends and family are powerful allies, both in health and illness.

For the Patient

If you are given a terminal diagnosis and want to live, do not give up hope, and especially do not give up fighting. Enlist all the resources you can gather. In my years on this planet, I have seen too many cases where people have gone into remission, or have exponentially outlived their projected prognosis, in order to initially consign someone to their demise without having exhausted all other options first. You never know what can happen until you fight.

Even if you do not make it, what doctors learn from your fight may one day save one of your children, or another loved one. My sister quadrupled the life expectancy of her cancer diagnosis not only because she was such a good patient, but because the knowledge gained from patients before her resulted in improved medicine. In my observations however, good fighters have a much better chance, no guarantee, but a better chance of at minimum outliving their life expectancy than people who do not fight.

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