I’ve been reading some of the Facebook pages about oral and head and neck cancers, and I’m quite surprised at how many people don’t really know what is going on with their treatments, or the treatments of a loved one. And in way too many cases, people just don’t know how to cope with the entire situation. I seriously recommend that before you do much else in your battle with cancer, you select a ‘buddy’ to help you through this. Oh, please, don’t give me that macho I-can-do-this-on-my-own bullshit. The odds are really good that you’ve never been here before. How do you know that you can handle it? This isn’t a situation you can talk yourself out of, a bullet that you can dodge, a bar fight that you know you can win, or one where tears, a pout and stamping your cute little hoof will serve you well. Cancer won’t listen to your finely crafted rhetoric. This damn thing is an IED that’s already gone off and tossed you into a ditch. You’ve lost the bar fight. Not only did the heel on your shoe break when you stamped your little hoof, you’ve also broken a fingernail. So get someone to help get control of some of the harsh, day-to-day realities: you need to concentrate on surviving.
Choosing a ‘buddy’ really does require some serious thought on your part and the part of your spouse or significant other. You are in need of a ‘health care advocate’, not just a shoulder to lean on. In my wanderings around the Internet I’ve discovered that in the United States of America there are people and organizations that you can hire to be your advocate as you try to work your way through the complex insurance, diagnosis and treatment systems set up to deal with cancer. Even in Canada, sometimes it might help to have a professional looking after your best interests when dealing with the medical system, and your world in general, now that it is in such disarray. But you’ll probably stick with someone close to you to work with you as you navigate your way to restored health. Consider them a Cancer Survival Project Coordinator.
Be aware that your spouse/partner may not be the best person for this job. It may not be your parents, or a sibling, or even your best friend. All of these people love you, which could be a bit of a problem in context. Can they sit and just listen to the specialists without allowing hysteria to creep in? Are they able to figure out what questions need to be asked and when? Will they really help you to make the right decision, the best decision? Do they have the depth, the strength not to throttle an inconsiderate nurse, or an uncommunicative doctor, a completely dense pharmacist or an unaware acquaintance? Can they be cheery, diplomatic, analytical, and keep you, all of your appointments and your Personal Support Team organized? Do you trust them to speak for you to your family, your friends, your employer, your banker? Will they let you rage, weep, moan and then help you back to centre without patronizing you? Will they give you a kick in the ass when you deserve one? Keep looking for this is the type of person you need to be your Cancer Survival Project Coordinator.
Now, back to what brought this topic up… there are folks out there who have no idea what is happening to them, what is and is not being done for them, and what comes next.
Challenge everything; research, go on the Internet, get a second opinion. Demand answers.
There is no need to be rude about it, but make sure your doctors and advisors understand that you will not be taking things at face value. This is one of the crucial activities for your buddy; making sure that you are not slipping into complacency when it comes to your treatment regimen, that you are not blindly following the doctors’ advice. It is only a comment on human nature, but your doctors will treat you with a wee bit more respect and ‘inclusion’ if you’ve done your homework. It is the very rare health care practitioner who gets annoyed if you seem to be well on your way to expert status about what’s trying to kill you. And if they are annoyed, you need to think seriously about finding another doctor.
Work out the ‘plan’ for treatment with your doctors, with your buddy’s help. What do we do now to get rid of the disease? Conferences with your doctors will provide you with most of the information you need to make informed choices for your treatment. Surgery? Rarely done on its own. Radiation? Before or after surgery? What about Chemotherapy? Adjunctive therapy? Alternate medical options? All of these need to be discussed, researched and scheduled. A plan helps you, your family and friends, and your employer focus on the future. And a good buddy helps it all stay on track.