Your part in controlling your mesothelioma pain
Pain is different from other medical conditions, in that it can’t be X-rayed or CAT-scanned or measured with a lab test. As the person with the pain, you are the expert. You are the one who knows where you hurt, how much you hurt, and what the pain feels like. You are the one who can tell your doctor how long the pain lasts, and what gives you relief. Because you’re the expert, you’ll need to talk with your doctors and other people who are caring for you about your pain, so that they can fine-tune their solutions to what works for you.
You’re the expert
To get the best from your pain management team, you need to describe your pain in as much detail as you can. Your doctors and nurses can help, but only if they hear from the expert on your mesothelioma pain—you.
Sometimes people fear that talking about their mesothelioma pain is complaining or whining. It’s not. It’s giving the people who work with you the information they need, information they can’t get anywhere else.
Dr Ann Berger, director of the Pain and Palliative Care Service at the National Institutes of Health Clinical Center, and herself a cancer survivor, strongly recommends that patients talk to their doctors about their pain. About assessing pain in cancer patients, she says “I don’t think it’s difficult, but to assess pain, you do need time. Total pain is physical pain plus psychological issues, social issues and spiritual issues, and to get at all of that you need more than the average ten-minute visit. If an oncologist has only a few minutes with a patient, naturally the discussion will center around what is going on with the cancer and they won’t be able to deal with the other issues.”
Pain management specialists know that treating mesothelioma pain successfully requires constant reassessment and fine tuning. They need to ask specific questions of their patients. It may not be sufficient to just ask, "How are you doing today?" For proper assessment, treatment team members need to help patients talk about the impact that pain is having on their daily lives. More specific questions, such as, "How have you been sleeping?" or “Tell me about your work routine" can open up the discussion.
The discussion should include questions about the physical symptoms of the mesothelioma pain and how the patient experiences it: Is it sharp, burning, numbness, tingling, a deep ache or a stabbing pain? Dr Berger also asks questions about the person’s emotional state, social issues, family issues, what kind of losses have they had in life, and how religion and spirituality fits into their lives. She wants to know how the important people in the person’s life had died, what the death was like, and how has the person dealt with other losses in their life; and how they deal with stresses.
She encourages patients to start thinking about these questions and talking to their doctors. Your doctor should know whether you are spiritual or religious, what kind of personal community you have, and what importance spirituality plays in your life. All of these dimensions affect how a person experiences pain and what will be helpful in managing it.
Why you should have the most effective possible management for your mesothelioma pain
Pain can have powerful negative effects on your quality of life. It can keep you from doing the activities you enjoy. I can interfere with your sleep and your appeitite. It keep you from enjoying the people you love, and can make you want to isolate yourself. Many people report that their mesothelioma pain has made them depressed and fearful. Pain can interfere with your recovery from surgery and other theapies, because if you are in pain you may feel less like involving yourself in rehabilitation.
Much of the pain of your mesothelioma can be controlled with pain management medication and a variety of other approaches. When your pain is well controlled, you’re more likely to want to get back to the activities that interest you and give you pleasure. Don’t wait until the pain is intense and overwhelming; it’s actually easier to treat mesothelioma pain early on, when it’s less intense. The sooner you let your nurses and doctors know that you’re having pain, the more helpful they can be, and the more likely you are to get some relief.
Ways to talk about your mesothelioma pain
Here are some questions about your mesothelioma pain. Your answers can give your doctor and other pain management specialists a lot of information about your mesothelioma pain, and help them figure out what would work better for you.
How much do you hurt?
A 0-10 scale can help you rate your mesothelioma pain., where 0 means no pain and 10 means the worst pain you can imagine. For tracking your pain to see how it changes during the day, or how it responds to pain medication or what happens when you’re more active, this scale can be helpful.
What does your pain feel like?
Not all mesothelioma pain feels the same. Some pain is a burning sensation, or a tingling like an electric shock; some pain throbs, some is a deep, dull ache. You may find your own words to describe your pain. When you can describe your pain clearly, you give your pain management team a head start in helping you?
Where does it hurt?
You’ll probably notice that your mesothelioma pain doesn’t stay the same, but changes over time. It may get better or worse in the course of a day, or it can feel different, shifting from a burning to an ache. Be sure to tell your care team about changes in your pain, how it used to be and how it is now.
What helps reduce your pain, and what makes you hurt more?
You have probably tried some ways to decrease your pain (doing something you like to do, using heat or cold, or meditation, or taking your pain medicines). You may have figured out certain positions or postures that help with your pain. You’ll also want to notice which activities can make your pain worse.
How well is your current pain treatment working?
If you’re being treated for pain now, you need to tell your care team how much of your mesothelioma pain is relieved: totally, almost all, some not at all, or whatever else describes your situation.
You need a plan for pain management
Taking pain medication is not enough. Pain specialist Dr Ann O’Mara of the National Cancer Institute emphasizes that patient and the treatment team must have frequent, continuing discussions to determine how the medication is working and how the patient is coping.
As the expert in your pain, you can work with your doctor or nurse to write a customized pain control plan that works for you. In a pain control plan, you and your doctor or nurse plan what you will do to control your pain, including a schedule for when you take your medicine, how and when to take extra medicine for breakthrough pain, and the measures you can take, such asadequate rest, meditation, distraction, self-hypnosis, and use of cold or heat that can forestall your pain or lessen it.
If you have other pain, unrelated to your mesothelioma, like arthritis or migraines, your care team also needs to know about these, so they can be treated as well. If treatment for your mesothelioma is creating painful side effects, tell your came team about these as well, because they may be able to be treated.
For some patients it takes some trial and error to find the combination of medicines, and the timing and dosage that works best. If a particular medicine or the way you are taking the medicine doesn’t work for you, your doctor and nurse need to know that so they can help you find the medicine or approach that will help the most.
Make a pre-emptive strike on your mesothelioma pain
A good pain management plan is a pre-emptive strike. Remember that the goal of your mesothelioma pain management plan is to prevent pain. Preventing pain means sticking to your medication schedule. Don’t skip doses or decide to tough it out. It’s the nature of pain that if you wait until you’re feeling it, it’ll be much harder to get the pain under control.
Breakthrough pain is the name a brief and often intense flare of pain that breaks through your usual pain medicine even if you’re taking it right on schedule. Certain actions or postures can increase your mesothelioma pain, for example, sitting, or standing or riding in a car. You may need to take extra doses of pain medicine if you know that you’ll be doing something that increases your pain. If your pain gets worse, or if new pain starts, call your care team.
It’s a good idea to keep a record of pain and how effective your pain plan is. All you need is a notebook to write down what you’re ttaking, and how it’s working. Show your notes to your doctor or nurse; it’s another way you’re the expert on your pain. They’ll be able see what’s working and what’s not, so they fine-tune your pain management plan to make it more effective for you.
Plan ahead; don’t get caught short When you’re down to three or four days' supply, be sure to call your doctor, so that you’ll have plenty of time to secure refills.