Wednesday, April 28, 2010

What People Fail to Understand About Having Cancer

Obviously someone who has never been diagnosed with or gone through treatment for cancer can be empathetic and concerned for someone who has. Feeling empathy and actually understanding the feelings of someone with cancer is another story. Certainly someone with a friend or family member who has gone through treatment will have a greater understanding but still don't know everything. One of the hardest types of people to deal wtih are those who have had a family member with let's say breast cancer, and think they know everything about cancer as a result. Not everyone is going through breast cancer. Each type of cancer has it's own set of emotional fallout as well. A woman at age 30 may undergo premature menopause being treated for cervical cancer. A man being treated for prostate cancer may develop erectile dysfunction.

Going through treatment for cancer is not like being treated for pneumonia or a broken leg. You may be responding to that statement with a comment like, "Duh that's pretty obvious!" On its face it may seem very obvious but you'd be surprised how many people expect someone who has gone through treatment for cancer to recover just like someone who was treated for the prior two. What I mean by that is once an individual has completed their cancer treatment, others expect that it is behind them, they should "get on with things" or "get back to normal".

The treatment may be behind them, but the ramifications of that treatment can have effects occurring weeks, months and even years after its completion. Once you've had cancer I don't think you ever get back to "normal" at least not in the sense of what it was before your diagnosis and treatment. Normal takes on a whole new dimension and post-treatment normal can be drastically different than pre-treatment normal.

Many types of chemotherapy can cause side effects which can last for weeks or months before resolving. Other side effects can literally last - forever! Peripheral neuropathy caused by certain chemotherapy is a condition involving the nerves in the extremities. It can involve upper or lower extremities, or both. The symptoms can include the sensations of burning, tingling, stabbing, cramping and a myriad of others. It can make doing things you once did, difficult. The sensations can interfere with your sleep by waking you up during the night and the secondary side effect of insomnia or sleep deprivation presents its own difficulties.

Radiation therapy can permanently affect the bones. A DEXA scan(dual energy x-ray absorptiometry)is used to determine the BMD or bone mineral density. BMD which once was normal can turn to osteopenia (reduced BMD) or osteoporosis (severely reduced BMD). Bone pain and an increased risk of fractures from reduced BMD are another side effect which can occur long after treatment has ended. The long term effects of radiation are numerous depending upon which area of the body received the treatment and you can wake up months or years later with a symptom or condition you've never had before.

Radiation fatigue can last from weeks to years in some individuals. Imagine what it's like wanting to get up and engage in activities you once enjoyed only to find you dont' even have the energy to get out of bed. Most people don't know this and so look at you and act towards you as if you were some kind of malingerer. You can be asked questions like, "Why are you still having these issues when your treatment ended six months ago?" or "Other people I know who have had cancer haven't gone through this why are you?" The latter question only shows the person's ignorance.

Just as people have different reactions to medications so too can they have different reactions to their treatment. Perhaps the individual they were referring to didn't have radiation and only had chemotherapy. Perhaps the total dosage of radiation was different and/or the method of radiation delivery was different. The treatment plan developed to treat even the same type of cancer will not necessarily be the same between people having that same type of cancer. What people need to understand is that there is no cookie-cutter treatment for cancer and while protocols do exist they are but an outline for the physician to follow. Other pre-existing conditions which the patient may have must also be taken into account (eg. a heart condition).

Ongoing fatigue, pain and other side effects can lead to depression or exacerbate a depression which already exists. One of the things which is consistent amongst those having dealt with cancer regardless of the type is an ongoing fear of a recurrence. The degree of that fear may differ but I have yet to encounter a cancer survivor who has not been concerned on some level with a recurrence.

The type of treatment by others described above only serves to make the situation worse. It can lead to feelings of guilt for being unable to "carry their own weight" when doing chores or running errands as they once did. Feelings of disappointment at ones own inability to even enjoy activities they once did can be overwhelming. For me, one of the things that is difficult to deal with is the inability to even make plans for myself. Oh sure I can make them, but since I cannot predict just what "condition" I will be in when that day rolls around, I often have to cancel them. It's not unusual to become angry at the circumstances not to mention frustrated.

The best thing for the cancer survivor to do is to explain to others that while the treatment may be behind you its ramifications are not; that you are an individual, and that your side effects and how your body responds going forward may not be the same as their Aunt Martha or Cousin Larry. Explain also that this continues to be a trying time for you and that you would appreciate their consideration that you are doing the best you can on any given day. You cannot make promises to others, or to yourself, about where you will be in your recovery at a specific point in time. All you can do is take one day at a time. My mother used that phrase all the time and I grew to hate it. I've since come to realize the validity of those words for that is truly all we have.