A diagnosis of cancer can be devastating. Cancer treatments can be terrifying. If you are blessed enough to have family and friends to support you through these events, then you know how important that support is. But what happens when its over? What happens when a patient becomes a "survivor" but everything doesn't quite go back to normal?
Many cancer survivors experience ongoing long term pain that is a result of the treatments they received for their cancer. A study cited by CNN estimates that approximately half of all women treated for breast cancer continue to experience pain long after their treatment is over. There are a number of different possible causes for this pain.
Lymphedema is one such cause, and occurs when the lymph nodes are removed or damaged (such as during cancer treatment) and the lymphatic system becomes blocked. The limbs can become extremely swollen, achy, and difficult to move - even years after the initial removal of the lymph node.
Chemotherapy and radiation are known to also cause pain that results from nerve damage, known as Peripheral Neuropathy (PN). PN is similar to a "pins and needles" feeling when a limb falls asleep, but imagine that feeling multiplied several times over, and those pins and needles have also been sitting on hot coals. Burning, tingling, numbness.
Steroids are often used during cancer treatment to help reduce inflammation, increase appetite and reduce your body's immune response thereby assisting chemotherapy and helping to prevent rejection in the case of an organ transplant. Unfortunately, steroids have the side effect of causing osteoporosis (thinning of the bones) which can lead to long term bone pain.
Severe ongoing pain has many possible courses of treatment... from opiates to anti-depressants to anti-seizure medications that can calm the burning of neuropathy. Hot and cold packs can ease pain, along with alternative therapies such as meditation and massage.
The combination of treatments is something that a patient can work out with their doctor, pain specialist or nurse practitioner. As that "perfect" treatment is being developed, there will be trial and error and perhaps frustration. The right support from friends and family is critical during this time. Here are a few ideas on how to "be there":
Understand that chronic pain sufferers, like those undergoing cancer treatment, often have a hard time doing day to day tasks. It may be hard to go out for dinner, but bringing over a meal (especially one that will have some leftovers!) is a great way to spend time, provide some nutrition and alleviate the burden of having to cook when in pain.
Friends and family can feel put off by someone who is hurting. They might not know what to say or do when someone is in pain. For the person who is suffering, it often comes with a heavy dose of guilt, feeling like you only have the ability to take in a relationship. It's hard to admit that you want people around when there is little you can do other than nap or rest. Sometimes just the comfort of knowing that there is a friend in the next room to help if needed, but expects nothing in return, is the best treatment of all. If you can be that friend every once in a while, go for it.
With chronic illness and pain often comes depression. It's easy to forget about those who are suffering in favor of friends and family who are more joyful. Remember that a simple phone call, email, or letter makes a big difference when someone feels like they are suffering alone. It may not always be returned immediately. It's difficult to do so when you're in pain - but knowing there are people who care helps those who are sick and in pain know that they are not alone.
Everyone deals with illness and pain differently. Post-treatment pain may not even be an issue for many survivors, but if it is, communicate with your doctor about treatment and don't be ashamed to tell your friends and family how they can help! If you are a friend of family member looking to support someone dealing with chronic pain, as in all things, patience and love goes a long way.
Barb and Wilma at the Cancer Center in Tucson, February 16 2015
Danielle Mackenzie has been volunteering with The Butterfly Club since February of 2015. She decided to start volunteering in honor of the one-year anniversary of the loss of her friend to pancreatic cancer. She has been a chronic pain sufferer as a result of chronic migraines, neuropathic pain and allodynia for over 25 years.