After your surgery did you feel like you would never be normal again? I’m really struggling with that part. I have to go back in tomorrow to remove a small part in the back of my tongue to make margins clean. I’m starting 37 days of radiation after the holidays. The feeding tube I have is the most painful part of everything. I’m demanding it out! But they say I will be unable to swallow during radiation. Did you have that problem ? Everything is so scary, now more than before. They say the type of cancer I have, if it comes back, will do so during the next two years. I hate to live scared but I’m afraid this is what my life has become. I just want to get back to being me.
Do what is best for you, not them. No feeding tube is perfectly possible. Yes, you have to force yourself to eat, and it hurts like you can’t imagine, like the worst sore throat you have ever had in your life, but it is possible. In fact, I have met several survivors who relied on the feeding tube too much and they needed months of swallowing therapy to learn how to swallow again. So, there is a negative to having the feeding tube, too.
They are right that if it comes back it will most likely come back in the next two years, but guess what, with the radiation….you are doing everything possible to prevent that from happening.
You WILL get back to yourself, but you need to give yourself 5 months….at least 6 weeks post radiation. But when you look at the length your life will be (like mine) the 6 months or so to deal with this will be a blip of nothingness.
Balance the pain you are experiencing with the joys that life gives you. They are harder to see with the pain, but they are there if you look hard enough.
Sending you a hug,
You just made my day…. Thank you.
I did not get the tube out but they did take out little bolts around it which were so painful. The past week has been extra painful because they went back in and sliced the back of my tongue.
How long after you stopped radiation did you feel better than decent? I’m planning a big vacation with my family and am thinking end of March or April. I finish radiation mid to end of March. The last thing I want to do is go on vacation and feel bad.
Thank God for you… You have been an inspiration for me through all of this.
You need two weeks after radiation just for the symptoms to subside. Then, you need a couple of weeks to feel more normal. So, look into late April instead of late March. I, too, planned a vacation 2 months after treatment, and it really helped to have something to look forward to – great idea on your part!