Tuesday, April 29, 2014

Patient experience: getting through chemo

The other day I was contacted by someone who has recently been diagnosed with the same form of ovarian cancer as myself. She found my blog and had been reading along my journey as she prepped for her own. She asked me what were three key things for me personally during chemo that helped.  Here was my answer:

1. Support
Family, friends, co-workers, neighbors, friends of friends, you name it. At first for me it was really hard to accept help or even to ask for help. This has more to do with my personality than anything else. I told her it takes a village to get through this battle. And it truly does. I could not have gotten through the day to day with out my parents being physically here.  My friends coming over to sit with me as faded in and out of sleep. My coworkers bring by meals and small treats to brighten my darker days. Hundreds of cards and care packages coming via snail mail to offer words of comfort, prayer, support.

2. Accept where you are at any given moment. 
Some days were really hard. I couldnt focus on what I needed or wanted to do. I had difficulty articulating how I felt (its okay to just say you feel like shit and move on). I was frustrated that yesterday I walked for 60 minutes no problem and today I could barely go for 10 minutes. The key to getting through those times for me were to stop beating myself up about what I couldnt do and relish in what I could.

3. Stay active throughout chemo. 
During my first couple of rounds of chemo I felt fairly well. I had more energy to go for walks or entertain guests. But in the final two rounds, I really struggled with fatigue and low energy. Some days I would pace at 22 minute miles. Some days I truly wondered if I would make it the 4 blocks back to my house. But even if you walk to the end of the block and back (which I had days where that was all my feet would take me), it is something. Keep track of progress in whatever way is natural to you and keep setting small, obtainable goals.

She also asked me if there was anything I wish I would have done during treatments. My biggest change would be more on top of giving my body better nutrients. Now there were some days where I could only get down about 800-1000 calories, but on the days I was feeling better, I wish I would have juiced more, drank more healthy smoothies. I wish I would have taken more of an interest in what was going into my body.

It is strange to look back at the 12 weeks I was in chemotherapy and recollect specific memories. I remember one time a well-wisher told me "you just have to get through the week". I remember wanting to scream. I was trying to get through that hour, much less the week. I knew they meant well, but there were times when I wished I could just sleep through the week; knock myself out with something so I would not have to feel the pain. There are some weeks where I do not remember anything. I was in such a chemo fog that short term memories did not make it into the long term bank.

I am going to try and make some lists in the next few days that might help people in the future of how to help going through chemo or how to get through chemo. The lists will obviously be specific to my experience, but who knows, might help someone along the way. I know when I was getting ready to start chemo I was all over the internet trying to figure out what to expect. So maybe I can help someone like me :)


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