One topic that pops up consistently in the meso community is how to manage pain. I’m not surprised, as this is generally the chief concern of all patients faced with major diseases and their treatment.
Way back when I started in Nursing, decades ago, there were very few options for controlling pain. A patient who complained of pain would have to request medication (a short acting drug of 2-4 hour duration) each time he/she felt it was needed. If the disease had progressed to the point that the person was deemed terminal, or they were in considerable pain the majority of the day, the only other option was to “snow” them into oblivion with a heavy-duty drip of intravenous morphine. Needless to say, these options were pretty unsatisfactory to the patients and families involved.
Several events occurred to change this picture, including the establishment of the Hospice movement, and the development of more sophisticated drugs and delivery systems. What didn’t change however were the attitudes of many practitioners. Even today, we still encounter doctors and nurses who are reluctant to provide the necessary relief from pain, often citing the fear that a patient will become “dependent” or addicted.
Pain is NOT a character-building experience! There are many downsides to unrelieved pain, including diminished quality of life, sleep deprivation, depression, social isolation, decreased appetite, reduced mobility, and even decreased immune response. In some cases, unrelieved pain can over-excite the nerves involved and result in a chronic over-stimulation of the pain response: in this scenario, even the slightest touch can be perceived by the body as excruciating.
The management of pain is so important to health and well-being, that the organizations charged with regulating healthcare delivery have declared it to be a major patient right, and mandated that all complaints of pain be taken seriously, and addressed to the patient’s satisfaction (not the satisfaction of the doctor or nurse). So what can you do if your health care provider is not managing your pain as you would like?
First, let’s summarize how cancer pain develops. I’ve heard practitioners say “the cancer is gone, so there shouldn’t be any more pain”. Not true. Although cancer itself can cause pain by pressing on organs or disrupting nerve pathways, the treatment of cancer plays an equally large role in discomfort. Surgery, radiation, and chemotherapy can all impact the body adversely and result in pain sensations that persist even if the cancer itself has been eradicated. Pain is the body’s way of signaling that an insult or disruption has occurred to a body part or system – if the insult is beyond the body’s ability to repair it completely, the pain that results may become chronic.
Happily for us, statistics show that the majority of pain can be treated by medication and/or non-drug interventions. But the first step in relieving pain is to figure out what is your body is telling you. You should keep a pain diary for use in discussing pain with your practitioner. Try to document when the pain occurs, what makes it worse, what makes it better, and describe what the pain feels like to you. Is it sharp or dull? Gnawing? Stabbing? Burning? What part of your body is involved in the pain? Is the pain constant, or does it wax and wane during the day?
Pain does not always occur in the area that has been impacted by disease or treatment. Some pain can be “referred” – that means that the body part involved expresses the pain in another area, such as pain from the diaphragm being referred to the shoulder area. Practitioners are trained to interpret referred pain and trace it back to its origin.
Pain is not always a clear cut sensation, especially in cancer patients who have undergone multiple treatment modalities. Their pain may be of mixed origin: there can be the burning of nerve pain, the deep ache of bone pain, and the sharp pain of surgical incisions. For this reason, along with other factors, the relief of pain may not entail a single medication or approach. Many cases of pain require a “cocktail” approach to deal with the different sources of discomfort, such as an opiate for general pain relief along with a drug for the nerve pain and an anti-inflammatory agent.
Medications for pain can be short-acting (2-4 hour relief) or long-acting (up to 12 or 24 hours), and many patients find they need a combination of agents – a long-acting medication for general relief, and a short-acting agent for ‘break through’ pain that arises occasionally and breaks through the relief afforded by the longer acting agent. It is usually helpful to stay ahead of the pain if you can, especially with pain of a chronic nature. That means you don’t wait until the pain becomes established, but anticipate it instead and take your medication on a routine or regular basis. If you are on short-acting agents and find yourself in an ongoing cycle of having to take them routinely every 3 or 4 hours, you might need to consider switching to a longer-acting agent.
Each person’s pain is unique to them and involves many factors like ethnicity, genetic heritage, and individual experience and history. This means that you may need to experiment with different drugs and interventions to find what works best for you. Crucial to this process is a practitioner who is well-versed in pain management techniques, and who is willing to listen to you and work with you until optimum relief is obtained. In my experience, surgeons are probably the least effective in managing persistent pain – they are used to addressing the pain of surgery which is usually of short duration and disappears as you recover. Consult a practitioner who specializes in pain management – probably the best option is one who is trained to manage oncologic, or cancer pain.
Don’t worry about becoming addicted. This is an old myth that has been disproved by extensive research that shows that cancer pain patients can handle very high doses of medications with no dangers of drug dependency. If you find that a medication is not helping the way you wish, don’t give up: you may need to increase the dose or the frequency, or even try a different medication or combination of medications. Again, having a practitioner who is attentive to your feedback is critical to success. But the most important factor is YOU and your caregiver: don’t assume pain is a legacy you have to learn to live with. You have fought hard for your life, and deserve to have the best quality of life that can be achieved! You don’t deserve to be so exhausted by discomfort that you haven’t got the strength to go on fighting!
For help in understanding cancer pain and how to talk to your practitioner about pain, visit the Cancer Pain website at www.cancer-pain.org.