well, here I am whining , um, venting again.

I am my sixth week of radiation.After my treatment today I'll have 6 more treatments left. That will take me to Friday next week, since we get Monday off because it's Memorial Day, then I'll be done with rad.

My radiation oncologist told me that this week and next week would seem easier, like it's the downhill part of things where I can see the end in sight. But it doesn't seem like that to me. First, I've been fihgting nausea and vomiting from phlegm which had gotten MUCH worse this past week and I know it won't get better untl 2-3 weeks after treatment, right? So we're talking four more weeks of this. It seems like too much.

Second, I'm having worse mucositis--a more painful mouth and my throat is painful. It's hard to swallow water without puking because of the phelgm so maybe that's why my throat is sore but I'm also worried I have thrush. I went to an appt with my ENT yesterday who said he thought I did have thrush, when I asked, but seemed unconcerned. He said I have this Magic Mouthwash, which has nystatin in it, and that should take care of it. But from what I've read on this website, I wonder if I should be given something else, especially since my white blood cell counts are low and heading lower from the last chemo.

Anyway, I intend to ask teh chemo nurses and the medcial oncologists office today and I also have my weekly appointment with the rad. oncologist so I'll ask him (but he always passes the buck to the medical oncologist anyway). But asking is getting harder because aso I can barely speak lately.

Then also my ENT said it would take 6-9 months to recover from all this. I know I've heard people here say the same but he seemed to be saying that even the mucositis might last that long. Ealier, he has said 2-3 months! That really discouraged me. I am still hoping to go back to work part time in August, and I still willhave to have rad. for my breast starting aournd then. I as hoping I'd feel MOSTLY better by then.

when can I hope for some signs of recovery? Is it reasonable to expect that in five weeks, which will be over 3 weeks past the end of rad, I'll feel better and not have the phlegm? Is it reasonable to think in 7 weeks I will be able to eat soft foods and not have to rely on my tube? I need soemthing to look forward to, even if it's over a month away.

For the thrush they should give you fluconizole (sp?) which will clear it up in about a month. The script should be for one dose a day for 20-30 days. It does come in a liquid if you can't swallow the pills. I would recommend that you talk to the rad doc about it rather than the ENT. I found trying to figure which doc should handle what problem was sometimes a challenge. Eventually I decided to stick with the medical oncologist since he was the most thorough with Harry's examinations and was the one pumping the chemo. It just made sense and it made life a lot easier.

As for the mucositis, I can only tell you about our experiences so far and I have read others who are still suffering long after txs. Harry completed rad at the end of March. He is now 8 weeks post radiation. He still has the mucositis pretty bad and takes very little by mouth. He is up and around and getting a little stronger each day but he continues to have to use the PEG for food and I must continue to run IV fluids nightly because he gets electrolyte imbalanced and dehydrated.

Harry did not experience the worst of the rad txs until the very last few. Myself and the tech people had to really talk him into finishing. It gets really hard BUT... he made it through and he does improve a little every week.

When I was new here I asked the same question about time of recovery after txs. I was told first that everyone is different so what happens to one might not happen to another. But by having the chance to read the various experiences I have not been surprised by the various affects and it has helped us to move through this thing.

I was also told that improvements don't happen on a daily basis because the days can be up and down, sometimes quite drastically, but over time (2,3,4 weeks or so) you will notice that the bad days are less and the good days are more and that things are improving even if they seem slow.

I have had the most difficult time trying to get Harry to understand that he must be patient and give his body time to heal. But even when he doesn't listen to me, his body will draw the lines for him and it won't be ignored.

I guess that the summary here is that healing takes time and it might not always be obvious but it IS happening and will continue every week past radiation. I know that it will seem like forever but its not. And you must keep reminding yourself of that.

Here in Houston there is a group called CanCare and when Harry was first diagnosed and after the oncologists had scared us to death with descriptions of the treatments, I called. They hook survivors up with people just diagnosed. This terrific couple ended up coming over. He had oral cancer 7 years ago and is doing great.

Seeing him was one of the best things for Harry. Seeing and knowing that there is life after tx and that while it takes time it is doable and that there is hope always.

So hang in there Nelie, you are doing great so far. Stay on the docs butts, get some meds for the thrush, and let us know how you are doing.

I am still fairly new at this myself and you and I are in the right place for anything we need.

Thinking of You!
Cindy

Hi Nelie,
It's been a long time since my radiation, but I can remember thinking that I would not be able to get through the last few days. I had no chemo so none of the nausea problems you are experiencing. I also had no feeding tube and was living on Ensure Plus. You CAN DO THIS and will MAKE IT.

My last day of rads was the day after Thanksgiving. I do not remember what I did, but I did celebrate. I think it might have been just to sleep in and say it is over. The important thing is to try to get on with your life. Take a walk if the weather is nice. Smell the roses. The one thing I remember is that spring everything seemed more green and beautiful than I remembered. My husband and I aslo took a vacation to St. Kitts for 2 weeks in April. It was for us a way to get back to the normal things we do. I did have problems with food, but hey, if you don't try you won't find out.

Do try to start taking things orally as soon as your Dr allows. Don't be discouraged. What tastes good one day may be horrible tomorrow. Take a book to the table. Everything may need to be cut into tiny pieces and take some time to swallow.

As for thrush, I had a rampant case for 6 months. Get meds now. Also one is not supposed to eat anything white, ie. that can turn into sugar, while having thrush, as in the 'now they tell me category'. I found this out 6 months later. If you are real food, try pasta that is made from durham flour.

I'm running out of time. Hang in there. We are rooting for you. I did manage to go back to work fulltime 3 weeks after rads, but remember, no chemo and no feeding tube, but I wouldn't recommend it unless necessary. It is summer. Take some time for yourself. You still have other treatment to go so do your best to build up your strength.

Take care,
Eileen

Nellie, Please don't get discouraged, don't ask the doctor for a while they tend to tell you the worst case. I noticed significant recovery within the first week after radiation ended. Everybody is different, you just have to go with it.

I will keep you in my prayers. May you be blessed with comfort and peace.

Barbara~