Tommorrow is a long day because I go for Amifostine then radiation then chemo number 2 all afternoon. And I thought I would feel rested up this weekend but instead I feel worse than when the weekend started and am just feeling weary and overwhelmed by the idea of 3.5 more weeks of radiation and two more chemos. I feel so yucky already.

It seems like this is the second weekend where my symptoms have worsened over the weekend. I guess maybe that's something I should expect. This weekend, the mucositis blisters inside my lips and cheeks seem to have remained about the same but I'm also having worse pain from my tongue and throat. I can't sleep for more than an hour or so without getting up to rinse with my saline/baking soda solution or take a dose of painkiller, or swab carafate on my lips, or if I don't do that, I am in severe pain when I wake up. And then I feel like I'm fighting some kind of bug--I'm headachey and was running a low fever earlier. Not a good feeling when about to begin more chemo!

It seems like there's way too much time to go until I'm done with treatment, given how awful I'm feeling already. So I'm trying not to think about the end at all because it seems too far away. And we have had such gorgeous weather outside this weekend which I have been completely unable to enjoy. It feels like I will never be able to enjoy something as simple as going out and working in the garden again.

In short, I just would like some encouragement here I think. Or any handy tips for how to get through this in terms of mental/emotional toughness. I feel like a real whiner compared to other people here but it's just where I am right now.

Nelie

Whining? I don't think so!

Nelie you have such a lot to contend with and must feel dreadful at times. I had little to deal with compared to you but sometimes wondered if it was worth it. (It was!)

I tried to focus on the one day rather than looking weeks into the future which I found overwhelming. I congratulated myself after each day's events were completed and tried to take joy in some aspect of my day.

That was how I dealt with my treatment and how I now deal with living with cancer.

Best wishes for today's treatment, with love from Helen

Hello Nelie,

The treatment and side effects can seem overwhelming at times. I can tell you, you will feel better one day. There is no shortcut on treatment for Oral cancer. Keep your chin up and get plenty of rest. Make sure you are eating enough to heal and maintain your weight.
Depression is common during treatment and after. If you feel you need them get some anti-depressants. You will need all the help you can.
Many of us have been where you are now. We made it and I know you can to.
Measure your progress in weeks not days. I feel the pain come through in your posting. I hope it lessens in time. I wish I could wave a magic wand and make you feel better. Please no that I and many members are pulling for you.

Love Ya, Danny Boy

p.s. It's not whining when you vent how you feel on this forum. It's called venting and it's good for you.

Nelie,

I have just added to my blog "The Book". Perhaps reading these pages of Heather's journal will help you to realize that your feelings are normal for this stage of your treatment. And you certainly are not "whining"!

Take care,
Rosie

Nelie,
I also struggled with the length of treatment. The smallest thing helped me in a enormous way and that was a small calender I put on the fridge and would make an X on each day when I came home from treatment. I still have that calender. When I would start to feel down I would take it off the fridge and count the days left, count how many I had done, etc. Making that X became the focus of my day and for whatever reasons, that helped me.
Minnie

Nelie,

I'm sorry. I goofed big time. I shouldn't have put that last entry from Heather's journal on my blog post. I'm sure that reading about her recurrence wouldn't be helpful. I'm really sorry.

Rosie

Nelie,

You will be able to enjoy beautiful weather and all the good things in life again! A year ago I was way down in the pits, too, although I "only" had to endure a tonsillectomy and neck dissection followed by radiation. One hour, sometimes one minute was all I could stand to think about.

I willed myself to feel very proud of myself for every day I survived, for every sip of yoghurt I forced down and kept down, for every disgusting thing I endured. I know other people have lived through worse, but on the other hand I know now that I am a lot stronger than I thought I was. Nobody else but other survivors know what kind of hell you are living in now - you kmow we are all pulling for you, as Danny said.

Remember, this is a war you are fighting, and you want to give yourself every advantage you can. That includes allowing yoursef to rest as much as you need, and putting your body's needs first for now. Whining is fine1! You have the right to whine.

And I know it drives you up the wall to have people tell you you need to rest when you can't sleep more than an hour at a time.

Love, Leena

Nelie,

I had very similar feelings to yours when I was at about the same stage of radiation. If I thought about how many treatments I still had to go, I was convinced I couldn't do it. I had to use the same tactics that several of the others mentioned -- dealing with one hour or one day at a time, getting through the next meal. Also, since I was still working part-time, I would try to focus a bit on some of my work-related projects (since at least they didn't require physical exertion) and that often helped to take my mind temporarily off of the treatment problems.

Hang in there -- you are not alone in what you are experiencing! Be sure your doctors and nurses are doing everything they can to help with your pain and discomfort.

Cathy

Thanks to you all, for the encouragement.

well I got an unexpected break today. I woke up with the very clear sensation that I was coming down with a unrinary tract infection. Which would explain the low fever I've had for the last couple of nights. When I called teh med oncologist's office (after a couple of hours of think it might "go away"-- yeah right), they had me come in to take a WBC and get a urine culture and they gave me antibiotics. My WBC was really low so they said they wouldn't do chemo today, that it could wait a couple of days until the infection and hopefully the fever are under control.

So I just came home, ate a little, and took a loong afternoon nap which, if course, I woke from with serious mouth pain because I had slept too long. And now I need to eat more AND the low fever is back (I can take liquid tylenol I guess, for that). I also need to get some yogurt down or at least some liquid acidolphilus, which may help prevent thrush after the UTI antibiotics kick in.

One hour and day at a time seems really good advice right now. It's good to know I'm not alone in this. Also, I'll have to remind myself that I'm not whining, I'm venting!

Rosie, I have been reading all along the blog you posted about Heather, including her journal entries. And I was aware the story doesn't have a good ending, though you're right that the last entry was NOT someting I needed to read last night when I was feeling down..

When I read your blog, I am actually most touched by your words in combination with hers, how clearly you saw all the facets of Heather and loved her deeply, every little bit of her, and supported her so much all through her battle. It isn't a fair world in which people like Heather get cancer and die. The world of cancer is in general totally unfair, though, we all knew that anyway, right?

Thanks for that suggestion Amy. Those are the stories I need to hear/read right now.