So tired

wbcgaruss said:

Mattie No Worries

We are just glad you are hangin in there.

You probably didn't feel up to being on here when this treatment totally and finally hit you.

I was exhausted like most on here and you are too. This process really beats your system up. I remember I was so tired and exhausted that I too napped a lot during the day. If I wanted to get something done I had to push myself and get it done and if I sat down a bit I would most likely fall asleep. Every time my rear would hit the chair my eyes would go shut and I was sleeping. Don't distress this is your body needing rest as part of the healing process.

The good things are you are gaining weight, your taste is coming back, and you are working to overcome the trismus.

This is a slow process as you have found and is measured in weeks and months but the days will go by and you will keep improving.

Wishing you the best-Take Care-God Bless-Russ

I'm really struggling to stay awake just about all day until afternoon. Luckily, I don't have to work much, at the moment and the cat is happy to have someone to nap with all day long.

I am indeed slowly but surely gaining weight. It goes back and forth: Gain some, lose some, gain a little more …

Taste is still weird in the part of my mouth that got the most stress, but at least, it's a constant blend of lemon and liquorice and not mould and metal.

Biggest worry at this point is that trismus. I try to stretch the jaw but it's quite painful. Progress is very scarce.

Best to you too.

My fatigue usually lasts until 4pm. I get up between 6 and 8am, have coffee, etc. Then fall asleep between 10 and 12am, until 2-3pm, have coffee again, and then I'm usually fit until late at night. It's the same every day.

I listen to my body as much as possible. Always did, btw., which is why I'm self-employed. I have times where I usually get up around 6am and others where it's between 9 and 10 or later. If that's what my body wants, I always try to make sure it can get it.

ricksmithgolfer said:

Therabite for Trismus

There is a jaw excerciser / stretcher called Therabite made by Atos. It is highly recommended in the world of head and neck cancer. I bit the bullet and purchased one and it has worked great. After finishing treatment for tonsil cancer my mouth opened about 50 percent of what it did before treatment. After using the Therabite for several months my Trismus was gone and my mouth opens all the way again. I am 28 months out and still use the Therabite as a precaution. Down side is they are really expensive. U.S dollars are probably around $500.00. Some insurances may cover it - mine did not. For me it was money well spent. Google Therabite and you should be able to get info on it. Take care, Rick

I am, right now, in the process of trying to get a Therabite covered by my insurance. Just made an appointment with a jaw surgeon to get it prescribed.

ERomanO said:

Mattie, it sounds like you

Mattie, it sounds like you are doing everything you can, but make sure not to let the trismus get out of control.  That Therabite, regardless of cost, would be something to get, just to be sure it doesn't.  One of my oncologists, at my last follow-up, twisted my head from side to side and thought it felt a little tight.  His parting words, with a look of some concern, were "Keep up your daily neck stretches. You don't want to let it (neck motion) slip away".  That's usually about all I need to hear from a doctor and I'm right back on track... sometimes with a vengance.  I've seen plenty of people in their 60s, 70s or beyond turn their whole body when trying to look at something over their shoulder, and the ones I know haven't had radiation of the head and neck.  I'm not sure if it's an aging thing or not.  It may simply be that many people are lazy, and as we age "lazy" can get the best of us.  We have to stay well ahead of "lazy" in order to maintain head motion.  

… trying to accustom myself to all the exercises, but I'm getting there. The better I feel, the easier it gets. There are neck exercises, jaw exercises and then, also, lymph exercises. Quite a lot for someone who is not used to discipline, but I'm getting there. I know I can do it. Took me quite a while to get started with the tongue depressors but I'm starting to have a good flow. The rest follows. Cheers.

motorcycleguy said:

Mat,

I think people under-estimate the amount of energy that it takes to heal up.

When I finished treatement, my co-workers got pictures of me sleeping at my desk. A couple days, I went home early, because I was worried I'd be too tired to drive, if I stayed at work.

Give yourself a break, and some time to heal. Get all the rest that you can!

You'll get the energy back ... in a little while...

mg

Friends call me up, asking how it's going and if I'm in for something to eat. I tell them I'm fine, but still exhausted and also unable to eat normal food at this point. They seem surprised. I tell them I'm actually healing extra-fast, but it still takes a long, long time.

At the same time, energy is coming back in bursts. I did a lot of cleaning and decluttering and found that I had a lot more force and energy than a month ago. It is definitely getting better.

motorcycleguy said:

Mat,

Yeah, I can remember it felt kind of awkward, not ordering food. I'd just eat a few bites off my girilfriend's plate - as she never eats all of her food, anyway.

I recall the general exhaustion was coupled with my mouth drying out. I'd get up many times in the night, to get a drink .. and we all know what that leads to! ...LOL

There was a period of time when I felt lucky to get 3 hours of sleep in 6 separate bouts.

All I can tell you is that it comes back slowly, and in a few months, you'll be feeling back to normal. Your body is just trying to tell you to rest when you need to!

I'm glad to hear you're getting better!!

mg

… not to be plagued with a dry mouth. My mouth is a little dryer than it used to be, but hardly noticeable. It was worse, at some point, during treatment, but it came back almost instantly.

Now, with taste, I had, for the first time, a carrot soup yesterday, and, astoundingly, it tasted the way it should. I still have a weird taste in my mouth, but only in the part that got the most stress. Nevertheless, I can see my taste coming back pretty quickly. My greatest worry remains my trismus, which is only one-sided, but quite persistent. Some days, I think I can see some progress, others, it seems to stagnate.

Apart from that, I try to reward myself a bit, and it works quite well. I was about to get rid of my record collection. Instead, got a new record player. Best idea in a long, long time.

Greetings.