Deciding whether or not to have radiation was one of the hardest decisions I have ever had to make. I was in real turmoil and thankfully I made my mind up within 4 days.
Day 1: Christmas Eve was the day I found out about the possible side effects of radiation. As much as many of the side effects are nasty, they are temporary. However I found that there was a possible permanent side effect of losing my hearing which absolutely terrified me. I had read of 3 ACC patients that had lost various degrees of hearing permanently. This is a lot when you consider that this extremely rare cancer (4 in a million are diagnosed with ACC) and there really isn't that much data or statistics to support the real ratio of side effects. I am already profoundly deaf. I know the isolation that deafness brings. I didn't want it to be worst. It changes EVERY relationship you have.
Day 2 was Christmas Day and with a extended family Christmas party, hosted by my son and his wife thankfully, I really didn’t have much time to dwell on decision making even though I couldn’t nap at all as every time I had any quiet time, my mind was in overdrive and in panic mode.
Day 3 was Boxing Day which was a day of hell for me, mainly because I had nothing to do but ‘rest and recover’ from the previous day’s festivities. This gave me far too much time to dwell, to think, to obsess, to cry, to pray and to cry again. It was another day when I couldn’t nap when I so desperately needed it. I was overtired and stressed out. Every time I tried to be rational and logical, the fear just took over.
Day 4 was our own intimate family Christmas party when 3 of my 4 kids were here and their families. Somewhere through the night I had started to consider that I could have the radiation. By the time I talked to my family, I was able to say that I was seriously considering going ahead with it. It actually was a relief to have finally made a decision. I felt I had done my bit, now I was able to ‘hand it over to God’ and let Him take charge. I was not totally at peace. That peace came gradually over the next 24 hours or so.
The phrase "taking things day by day" has taken on a whole new meaning for me.
Day 1: Christmas Eve was the day I found out about the possible side effects of radiation. As much as many of the side effects are nasty, they are temporary. However I found that there was a possible permanent side effect of losing my hearing which absolutely terrified me. I had read of 3 ACC patients that had lost various degrees of hearing permanently. This is a lot when you consider that this extremely rare cancer (4 in a million are diagnosed with ACC) and there really isn't that much data or statistics to support the real ratio of side effects. I am already profoundly deaf. I know the isolation that deafness brings. I didn't want it to be worst. It changes EVERY relationship you have.
Day 2 was Christmas Day and with a extended family Christmas party, hosted by my son and his wife thankfully, I really didn’t have much time to dwell on decision making even though I couldn’t nap at all as every time I had any quiet time, my mind was in overdrive and in panic mode.
Day 3 was Boxing Day which was a day of hell for me, mainly because I had nothing to do but ‘rest and recover’ from the previous day’s festivities. This gave me far too much time to dwell, to think, to obsess, to cry, to pray and to cry again. It was another day when I couldn’t nap when I so desperately needed it. I was overtired and stressed out. Every time I tried to be rational and logical, the fear just took over.
Day 4 was our own intimate family Christmas party when 3 of my 4 kids were here and their families. Somewhere through the night I had started to consider that I could have the radiation. By the time I talked to my family, I was able to say that I was seriously considering going ahead with it. It actually was a relief to have finally made a decision. I felt I had done my bit, now I was able to ‘hand it over to God’ and let Him take charge. I was not totally at peace. That peace came gradually over the next 24 hours or so.
Knowing the Peace of God in times of turmoil
I am still at peace about it today. I am still fearful, even terrified of going completely deaf, but now I am trusting God with the outcome. That doesn’t mean that I won’t go deaf in the future as a result of the radiation, but it does mean that I will let God be God and trust Him to guide me through whatever He has planned and that I am open to learn what ever lessons He has for me now and in the future. I also believe that sometimes I might be being used to teach someone else something, even something like patience and compassion. Who knows, that is God’s domain. I am clay in His hands.A time to recoup and regroup
When I informed my husband of my decision, he had the great suggestion that we postpone the start of the radiation for a month to use the time to allow my body to heal and regain some strength from the 2 operations close together which certainly had knocked me around something fierce. I thought that was a brilliant idea as I am extremely fatigued and still having blinding headaches 3 weeks post op. I had a request of my own then, which is to ready the caravan trailer and that we hit the road for all of part of that time. He readily conceded! Now we just need to inform the radiation oncologist. I might need to have a mask made before I can leave though.The phrase "taking things day by day" has taken on a whole new meaning for me.