← Return to Life After Cancer: Do you feel prepared for it?

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@becsbuddy

I am so glad that i came upon this discussion! @jessskoldal you have said everything I’m thinking! Will I ever get my life back, or, at least, some part of it? I have an autoimmune disease, not cancer, that left lesions on my brain. When the doctor told me that all the lesions were gone, i almost felt indifferent. Lesions were gone, but so was my life as I knew it. Guess I’ll just get up everyday and try, try, try.
Just wondering, what is the most difficult thing you’ve had to deal with “post cancer?”

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I currently have emotional and physical struggles that plague me daily. Emotionally, the most difficult I deal with is learning to cope with losing my sense of smell. The surgeons removed all the nerves responsible for smell so I’ll never get that back. Realistically I know it’s trivial in the grand scheme of things, but prior to surgery I was such an avid user of candles, aroma therapy, incense…I just miss that so much.

Physically my biggest struggle is the swelling of my face and neck. On bad days the swelling goes into my arms, chest, and back. The swelling limits my mobility and at best is uncomfortable, but more often than not it’s downright painful. I’ve tried every treatment and every therapy or exercise suggested and nothing helps. I have no idea why it gets worse or why sometimes it will improve. Even when it improves if never fully goes away. Being in pain and being uncomfortable all the time wears me down physically. It also impacts me emotionally. I don’t recognize the face in the mirror. I typically just avoid mirrors now when possible.

Getting out of bed. Some days it feels like it’s just going to be more of the same, so why bother. Those days require an extra effort to be grateful I CAN get out of bed, even if I’m still sleeping 12-14 hours. My favorite saying is “You can’t control what happens in your life, only your attitude about it.” Even when it’s hard, keep looking for those good things in life. Number one, you are alive.