So tired
Hi. I first wanted to say: sorry, guys. I know I was quite active, during the first weeks of my radiations. Then I disappeared for a while, more or less.
I feel a bit guilty, because I received a lot of support and good advice, and it feels a bit like freeloading, at this point. It's just that, during these last weeks, I felt so tired every day. All I have energy for is procrastination and the little that is left goes to taking care of anything that can't be delayed. I also sleep a couple of hours every day, during the day.
I'm quite well, I suppose. Gained a bit of weight – not much. Just about 2 kg from the 15 I lost since this whole journey began. My taste is coming back, but very slowly. I'd say that, on a traffic light scheme, if a month ago, it was in the red area, it's now mid-yellow. I can taste my calorie drinks, which allows me to take enough, but hardly anything else, really.
My biggest issue is, right at the moment, trismus. I try to stretch my jaw daily, with the help of stacked tongue depressors, but progress is very slow, if any.
I hope all of you are fine.
Comments
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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
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Ypu, similar here. Hang in
Yup, similar here. Hang in there, take care of yourself. Its harder than we thought despite coming on here, reading all the good advice and thinking we know whats coming. Even when we are right , knowledable and informed......its still hard.
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Thanks you, Russwbcgaruss 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.
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I thought it would be more brutal …The Cincinnati Kid said:Ypu, similar here. Hang in
Yup, similar here. Hang in there, take care of yourself. Its harder than we thought despite coming on here, reading all the good advice and thinking we know whats coming. Even when we are right , knowledable and informed......its still hard.
… but actually, the hardship is more in the length of time that it takes. I know this is my personal experience and I read from others who had the more brutal experience plus the length, so I'm not going to complain too much because, until now, I've actually had quite an easy run to this point. Still, on a personal level, it's a really hard time.
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Mattie You Are
Right on when you say "the hardship is more in the length of time that it takes". That made me remember that it was just one day after the other which went probably several months of being tired or just not feeling quite right and it goes on day after day but all of a sudden it seems you start to realize you're not so tired and actually feeling better and have some energy. Sort of like going up a big hill and finally you get to the top and go over the hump and can now see ahead and things are suddenly much brighter. Take care-God Bless-Russ
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Tongue Depressors
I'm using them too and it is working albeit slowly. With the dry mouth it is also difficult but just keep at it and you will see slight improvments. I have set backs some days and it is demoralizing, but then the next day i'm better again so just keep it up. I'm not where I was prior to treatment but I think I'll be there in a month or so.
I have battled fatigue also. I have forced myself to exercise and it was really hard during and after but it has been a week now and I am starting to build stamina and I feel less tired. My docs said listen to my body, but my body didn't want to do anything. My mind said lets go and I think my body is now listening to my mind!
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My fatigue usually lasts
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.
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Therabite for TrismusMattie65 said:Thanks you, 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.
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
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Therabitericksmithgolfer 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.
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Trismus
I was very compliant with all of my treatments and therapies--except for the trismus. l had one of those therabites and found it very painful to use, and didn't see any progress. Looking back I wish I had kept using it for a lot longer. Even if it didn't give me a larger opening, it might have prevented my opening from getting smaller.
mike
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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.
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Mattie
Sounds typical during treatment. I had to drive about 144 miles round trip everyday for radiation. I compare it to Bill Murray's groundhog day. Everyday for six weeks seemed to be the same thing. Sleeping on a reclining sofa because I could lay flat, up at 5 AM take my Oxy, leave about 9:15 to drive to Philly 10:45 get zapped, hop in the truck and try to stay awake on the drive home. My wife never drives on any road bigger than two lanes so her job was to keep me awake to which I tested her a few times on the turnpike home. I thought this routine would never end and I was scared of the changes I was going through hoping to return to normal. Like a good friend that use to frequent this site years ago we became abinormal. And I can truly say life has changed but life is good. Ive learned to cope with the changes.
There is a reason your winsheild is bigger than your rearview mirror. Worry more about where you are going than where you have been. Push forward fellow warriors. This site is great for people who are starting their battle and the ones who finished and took that deep breath to push forward.
Enjoy the day............. I do every one of them.
Jeff
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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
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TherabiteMikemetz said:Trismus
I was very compliant with all of my treatments and therapies--except for the trismus. l had one of those therabites and found it very painful to use, and didn't see any progress. Looking back I wish I had kept using it for a lot longer. Even if it didn't give me a larger opening, it might have prevented my opening from getting smaller.
mike
I'm trying to get a Therabite right now, but every doctor I visit says he never heard of it, and thus, can't prescribe it. In the meantime, I work successfully, albeit very slowly, with tongue depressors.
What I found out is: the trick is not to expect any fast changes, and also never to overstretch. When I feel pain, I go one step (one tongue depressor) down, until it fells safe to add one. If it hurts, I repeat. This way, I never lose courage to do yet another round. I progress about one or two millimetres per week, which isn't too bad.
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It's a slow process …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.
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Lucky me …Duggie88 said:Mattie
Sounds typical during treatment. I had to drive about 144 miles round trip everyday for radiation. I compare it to Bill Murray's groundhog day. Everyday for six weeks seemed to be the same thing. Sleeping on a reclining sofa because I could lay flat, up at 5 AM take my Oxy, leave about 9:15 to drive to Philly 10:45 get zapped, hop in the truck and try to stay awake on the drive home. My wife never drives on any road bigger than two lanes so her job was to keep me awake to which I tested her a few times on the turnpike home. I thought this routine would never end and I was scared of the changes I was going through hoping to return to normal. Like a good friend that use to frequent this site years ago we became abinormal. And I can truly say life has changed but life is good. Ive learned to cope with the changes.
There is a reason your winsheild is bigger than your rearview mirror. Worry more about where you are going than where you have been. Push forward fellow warriors. This site is great for people who are starting their battle and the ones who finished and took that deep breath to push forward.
Enjoy the day............. I do every one of them.
Jeff
… once again. I only had to drive about twelve minutes per bike to get to my radiation clinic. Your way back from treatment sounds like a dangerous endeavour. Lucky to have your wife by your side.
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Many do …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.
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Mat,Mattie65 said:Many do …
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.
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
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I'm very luckymotorcycleguy 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.
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Mattie Seems Like
You are progressing well. You are very blessed with a short duration of dry mouth and extra blessed that it did not stay. Many on here deal with a dry mouth for the rest of their lives. And your taste is coming back quickly that's great. Just keep fighting the trismus I know from a friend it is a slow process so hang in there. And you got a new record player just the thing in these days of Covid-enjoy-Take Care-God Bless-Russ
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