Down days

Posted on January 30th, 2008 by Cam.
Categories: Let's talk.

We affectionately refer to the days that I am off steroids as ‘down days’. These can be tough as the body tries to settle down from the four days on high doses of dexamethasone. We usually expect lethargy and more pain for these days. I have now been on chemo for two weeks today and we are surprised how good we are traveling. I feel ok considering it is my run of down days and I am still fairly mobile. I went to the workshop yesterday to get a few things in order and made it through most of the day.

Today is to be a quiet day though. Libs has spent a bit of time sorting out details with the fraud branch of the bank and the local police. I only really woke up at about 11 after getting to sleep at about 4 this morning. Sometimes I have to remind myself that my body is sick because I feel like I am going ok. When I don’t sleep, or if I wake up sore and sweaty, or if I can’t settle down, I need to take a minute to think ‘Oh that’s right, I am on chemotherapy’.

Even in conversation with people yesterday it seemed strange to talk about chemo while I seem mobile and looking ok. I would have expected at this stage to be looking sick, pale, no hair, vomiting everywhere I go, and people wouldn’t need to have it explained. It seems quite odd to have a conversation with someone explaining that I am undergoing chemotherapy at the moment and that I am just going to pop out to get some terriaki chicken and some keys cut.

Over these next few months, we need to be letting people know that my immunity is down also. We have been told to be cautious with kids, colds and crowds. Basically I can’t afford to get sick from now on. It is just helpful for us if we let people know that this is the situation for a while because we don’t usually ask people if they or their kids have colds before they come for a visit. We are still trying to operate on a sensible caution mentality, so I haven’t got to the stage where I am wearing bubble suits or cooking my food in disinfectant.

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