A picture of a glacier taken in Alberta, Canada during one of our travels.
Fatigue – There are different definitions provided for this as a noun including: “a cause of weariness; slow ordeal; exertion” or “a tiring activity or effort” (Source: Dictionary.com). Repeatedly throughout this process, from our preliminary discussions with our GP to the meetings with Oncology, we have discussed the side effects of chemotherapy particularly fatigue. To be sure, this is one of the most debilitating things to deal with. Normally when I write these pieces I don’t confer with my husband, after all this is my blog, my thoughts and my opinions, but for this one I did. I asked him to describe what the fatigue he experiences is like. I know what I see, I don’t know what he feels.
He finds the fatigue frustrating, debilitating and discouraging. More than anything else, the fatigue makes him question why he is doing this. A day goes by and he doesn’t know where it went. He sleeps more than he is awake, some days he can get up to 12 to 14 hours of sleep.
He finds it an effort to do the simplest things. He believes that fatigue and apathy go hand in hand. When there is any physical exertion required he has to psych himself up for it, something as basic as getting up from the bed to go to the bathroom is exhausting. He has no concept of time; his perception of time is skewed. He may take 20 minutes sitting at the side of the bed before he is able to get into it – time has no meaning at all. In day-to-day activities, he has no interest in doing much of anything because he can’t participate at any level – he doesn’t have the strength or stamina.
Over the course of this journey we have discussed many different things – this side effect is the most challenging because it is the one most difficult for him. Activity, involvement, creativity and fun are things near and dear to his heart, and right now they are out of reach. So each day he pushes himself to try to do a little bit more because he knows he will feel better for it, but to have to push himself to do such basic tasks reminds him of how much this disease has broken him down. I have learnt to listen more than speak when he vents about this. He knows what he needs to do, I don’t have to remind him.
Life is short. The one certain thing from the time you are born is that you will die one day. There are no guarantees and no do-overs. So regardless of what the future holds, you carry on until you can’t. That’s where we are at now. We carry on, we try to do things that we would normally do. But it has to be different. We need to recognize the tremendous energy drain that follows a day of “normal” activity. So for something that is important, we need to have a quiet day beforehand, gathering and storing energy reserves that we will use on the “normal” day.
Today’s “normal” day will be a reception at an art gallery that is about a 2 hour drive away. Dinner out, attend the reception and then head home. This is a little different from our “normal” since before we would hotel it for a night. However, we need the motorized bed, and there’s not a lot of hotels that offer them … A whole marketing opportunity is just waiting out there for the savvy hotel chain. Offer rooms with hospital grade beds for the handicapped. They’d have our business no doubt. I can’t help but see opportunity in marketing and catering to individuals with disabilities beyond the limited scope of handicapped provisions available to the public right now.
For us, we intend to go at full speed ahead. We will do all the “normal” things we once did until we can’t anymore – there’s no stopping now.