Cancer Fatigue

I'm clean for a little over 2 years now. It's been 18 months since I finished chemo and radiation. I'd swear I'm still gaining more scar tissue in my neck. Radiation is the "gift that keeps on giving". I think I've lost some bone mass in my lower right jaw. Tooth loss is considered normal after the treatment I had, and I've got a big molar that's loose.

Cancer fatigue is the nastiest of the side effects still hitting me. They told me I would lose some stamina and energy, but there is no way I was prepared for what I've encountered.

One of the big problems with fatigue is that everyone gets tired, everybody deals with fatigue, and at no time did I want to admit that I wasn't recovering to anywhere near my former self in this area. In the range of 2 years after my initial surgery, the fatigue issue is seen by some as relying on excuses and going for sympathy because "I had cancer".

At some point in the recovery process, there's a crossroads. Probably every chemo and radiation patient gets cancer fatigue, but the long-term results are determined a ways down the road. In my case, I suspect it was around 12 months after my radiation was finished. The crossroads is that you either continue gaining stamina and endurance, or it swings the other way.

Mine hit the point where I once spent both weekend days sleeping, except for waking up for meals. That wasn't my intention. The perception of others is that I was lazy and using my previous disease as an excuse for a lack of effort.

That's when I realized my fatigue problem was getting worse instead of better. I set up unscheduled visits with both my doctors. They were unanimous and adamant. I had to get some exercise and it was critical to do it immediately.

That was a problem. It was everything I could do to stay awake at work. I had to concentrate on staying awake on the drive home from work. I was typically asleep within 20 minutes of getting home, unless I was so wired on coffee from work that I couldn't sleep.

During conversations with my doctors, I learned that cancer fatigue is progressive. If it takes a turn for increasing, it keeps going that way. Whoa! I had already hit sleeping an entire weekend, except for meals. Past that gets pretty ugly.

Doctors told me that if I didn't have the energy to exercise and work, then I had to quit work and get some exercise. Exercise is the only known remedy for cancer fatigue. We're talking huffing and puffing levels of exercise.

On March 10, I stopped working and started exercising. I applied for medical disability. So far, that's been refused. Too tired to work doesn't seem to be a medical condition that officially causes a disability, even if a doctor explicitly says, "you have to quit work and get some exercise".

When I stopped drinking coffee to stay awake and got into a relaxed environment, I discovered I was not capable of staying awake more than about 5 hours. I tried it sitting at a computer while doing something entertaining, instead of work. I literally fell asleep and fell out of my chair after about 5 hours of being awake.

I've made a lot of progress in 2 months, but there's a huge amount yet to go. In two months, the longest I've been able to stay awake has been 13 hours (I did that twice) and 16-1/2 hours (I did that once). All three of those led to 2 days following that I couldn't get past the 5-hour mark without some sleep.

The fatigue levels rise and fall without apparent reason. When the fatigue was really bad, I was too tired to eat. I did not have the energy to chew and swallow food. That led to even more fatigue. The real problem was that if I told anyone, they immediately thought I was just trying to gain sympathy for being a cancer survivor.

If you think this could lead to problems at work - BINGO! - you are a winner. When I first noticed a fatigue problem (around September, 2010), I checked with HR to see if there was anything available that might get me some time off to deal with the problem. That resulted in a closed door meeting with my supervisor and his chosen witness. The word "termination" was used repeatedly. The phrase, "you must contact HR immediately and stop this" was the "only way I could save my job".

Now I'm pursuing a medical leave. Wanna make any guesses on how well I will be received when I go back to work?