Living with uncertainty

The most difficult bit about what’s happening now is that there isn’t much happening.

I’m in the in-between phase that lots of cancer patients experience once their treatment ends. For those of us with a diagnosis of terminal cancer who have had some form of palliative treatment, once this has ended there is this unknown length of time ahead during which we try to carry on with our lives outside of the health system, but at the same time are keenly aware of any new symptoms or the return of familiar ones. What is going on inside my diseased body, I wonder? Is the discomfort getting worse because the cancer is spreading or am I just imagining things. The uncertainty is hard to live with.

For those cancer patients whose surgery, chemotherapy, and/or radiotherapy were attempts to cure their cancer, there is the hope that they have been cured, and they have years of life ahead of them. Yet, there is no guarantee that the cancer won’t return, and they, too, must learn to live with some degree of uncertainty.

Everyone tells me how well I look. My hair is growing back, and ten days ago I gave up wearing my wig, and now wear hats when I go out. I am working towards not feeling the need to wear a hat, and I am now able to look at myself in the mirror without wearing my wig or a hat. These things are major achievements for me.

I am due to have another CT scan in a month or so. I have mixed feelings about this. While I find it difficult to live with this uncertainty, and keep wondering how long I have got left, dealing with the CT scan result may be even more challenging. As with the previous CT scans I will not allow myself the luxury of hope. The only way I have of coping with my situation is to stay off the roller coaster. I can handle good news, but not disappointment.

In the meantime I am now down to twice weekly dressing changes for the wound on my neck.