Valerie,
... well the RO's normally do not get the treatment so some of them really do not know what it is like. His RO is not very smart (so put this mildly) to say this but that does not mean you have to become a complete sceptic. There is a wide spectrum how people react to the treatment. (due to individual response but also tumor location and extent as well as irradiation volume and concurrent and differing chemo treatments). Especially, with IMRT it can vary quite widely. True there are people who sailed through this and were eating normally (or almost so).... but the majority do not. I was not eating solid (well semi solid anyway) food for about 3 weeks (PEG), but I was drinking water and milk or milk with some coffee for color (sometimes even water burned depending on the source!)
It is not smart of the RO to state the best case scenario! Naturally, we grab at that straw. It is much better to have a more realistic (perhaps even pessimistic) outlook. Anything better than this IS positive.
My RO told me that the treatment will be brutal and that I will hate her. (Her words!). Fortunately, it was not that bad.... but I was expecting it and I did feel uneasy for quite some time (other shoe and all that). I managed to drive to Tx and to work half days with exception of the weekly chemo days up to the last week and started work again about 2 (slimy-mucous-wallpaper-paste) weeks after the Tx ended. Mind you I am pretty sure I was not very effective and just the walk from the garage to the lab knocked me out the first day back. (Not very smart that!!). One thing that I noticed that once the TX was done there was a distinct letdown. During TX you are busy to go to rad and chemo TX etc and then all of a sudden there you are all by yourself without constant medical attention.... just with your thoughts... what if. For me that took some adjustment. This is also when you may develop thrush.. and since you are miserable/hurting already and probably are on fairly hefty pain killers it may be difficult to know this. (I would recommend a weekly checkup).
Wisdom gleaned from this site states that it takes a month for each week of radiation. Taste/dry mouth can take up to a year or longer to reach a new equilibrium.... whatever that may be.
Since then (2 weeks after TX) things have improved for me steadily and quickly. Taste has returned somewhat (still ways to go, amazingly shrimp came back early), numbness has gotten less, blisters are gone (and if I get one I do not freak out right away). I still do not like steak and dry things (I used to love salt and vinegar potato chips......) and wine is still out. Since the end of the TX I have been in Mexico and Switzerland for holidays and a class reunion. There is life after this, and things that seem impossible to even contemplate during the dark days are possible!
Hang in there!
Markus
