Still got it!
I know that little tid bit wasn't cancer related but it feels good to get a few moments of my once normal life in. I don't know how long it will last but a few weeks of normalcy is going to be most welcome. I said a prayer at the end of my round today. My prayer was that everyone on this board be able to experience a moment of normalcy. So sometime this weekend, get out, go in, whatever you're into and enjoy a moment of normalcy. Put all your cares and worries on the back burner, they'll be there when you get back. The moment maybe fleeting or it may linger, whichever you receive is a blessing. Good Luck and you're welcome!
Comments
-
Normalcy
Yayaya John!! That is so wonderful... and from here on in, treat every day as a normal day... whatever you envision your "normal" to be. We all come from different backgrounds, different lifestyles, different hobbies, likes and dislikes.
Me, my passion is being involved with the theatre and now, I get great pleasure from supporting the young folk who aspire to act, sing, and dance. I am sooooo lucky that, despite my ongoing chronic pain (the chemo managed to aggravate what was already there in the way of arthritis, as well, has done damage to nerves, so there is nerve pain also), I have been able to continue having a normal (for me) life this past 17 months that I have been OFF chemo.
Hehehe... you've all heard me whine in one topic or another about how I really wish I could go out walking with my dog, like the good old days before diagnosis. Even when I was in pain because the tumour had perforated the intestinal wall, formed an abscess and a severe case of peronitis had developed, I hadn't been diagnosed yet and I still would go walking 4-5 miles every day... and kept telling myself to quit being such a wimp
Fast forward to the completion of 8 months of chemo and 6 weeks of daily radiation and all of a sudden I couldn't do the walking anymore. I blamed it on the arthritis which had gotten worse because of the chemo...but as time has gone on, there has been more pain. The nerve damage/neuropathy in the feet/shins. Then it hit the lower back. Neck and arms are affected to.
Well, today I got a new diagnosis (new to me). I have CPS (Chronic Pain Syndrome) which is not uncommon if someone has had a severe injury or from cancer treatments. Who knew? It is complex and hard to diagnose but my GP is pretty sure I have it. It is different than Fibrolmalygia in that CPS mostly stems from the central nervous system. Nerve endings are sending "pain messages" to the brain... in my case, from all over the body, not just the feet/shins. These are damaged nerves from the chemo.
My doctor has given me a 5 day sample supply of "Tramadol" which is a monoamine uptake inhibitor and centrally-acting analgesic, used for treating moderate to severe pain. I was doubtful. I've been in pain for so long, it's now affecting my sleep and what I can actually do physically. Heck, walking to/from the car has been a challenge, let alone getting in/out of it. Tramadol is to be taken 1 pill/day. I took one shortly after I left the doctor's office.
About an hour or so later, I couldn't believe it!! I'm not totally pain free but on a pain scale of 1-10, my ongoing pain level was about an 8.5... and I just continued doing what I had to do, even with the pain. After taking the pill this morning, my pain level has probably been about a 3-4... huge difference.
I thoroughly enjoyed working at the theatre office today and now (keeping fingers crossed) am actually getting excited about the summer shows. I may be relatively pain-free for the whole summer!! Chemo free and Pain free... there's actually a possiblity this will be the case!!
So I'll be sure to keep everyone posted as to whether I get to have a "normal" summer. Well, the not normal thing would be that I get the summer off... I won't actually be working my day job (for the government)... but able to spend the whole summer in the most gorgeous park, working on two Broadway shows at an outdoor theatre that seats 1500 Now how normal is THAT???
Huggggggs,
Cheryl0 -
I'm so glad you shared that, John!
Thanks so much for sharing that with us, John. That was a great start to my morning! I promise to be 'normal' today and for as long as the Lord allows!
Thank you for praying for us. I also hope everyone on the board can enjoy the weekend and find a ray of sunshine no matter what the sky has to say.
LOVE your attitude!
Diane0 -
wishing you long normalcy!
Wishing you the best as well!
Chip0 -
Normalcyimpactzone said:wishing you long normalcy!
Wishing you the best as well!
Chip
Thanks for the prayer......with being told that the big scare
was actually nothing....I am experiencing a period of normalcy,
went on an all day wildflower hike in the Appalachian foothills
yesterday and was able to hike all day without getting tired...
I would have to seriously say it is a "new normal"....not exactly
like before ca, but it is wonderful nevertheless....and I will
definitely take it and keep it going until July when next scan
is due.....hope you continue to have many days and moments of
normalcy as well....
Barbara0 -
enjoying "normal" life
I'm so glad you got to enjoy a golf game and feel like you're having "normal" life again!
This last week, I saw and talked to a couple of friends and didn't think about it until later, but my cancer didn't come up at all in conversation. I feel like I must look and feel well enough that my cancer and how I'm doing isn't the first thing people ask me about again. I certainly don't feel neglected by it- I'm sooo glad to have just "normal" conversations and activities! I was at the beach with my daughters yesterday under our beautiful San Diego blue skies- it was awesome
Here's to normal, everyone!
Lisa0 -
painCherylHutch said:Normalcy
Yayaya John!! That is so wonderful... and from here on in, treat every day as a normal day... whatever you envision your "normal" to be. We all come from different backgrounds, different lifestyles, different hobbies, likes and dislikes.
Me, my passion is being involved with the theatre and now, I get great pleasure from supporting the young folk who aspire to act, sing, and dance. I am sooooo lucky that, despite my ongoing chronic pain (the chemo managed to aggravate what was already there in the way of arthritis, as well, has done damage to nerves, so there is nerve pain also), I have been able to continue having a normal (for me) life this past 17 months that I have been OFF chemo.
Hehehe... you've all heard me whine in one topic or another about how I really wish I could go out walking with my dog, like the good old days before diagnosis. Even when I was in pain because the tumour had perforated the intestinal wall, formed an abscess and a severe case of peronitis had developed, I hadn't been diagnosed yet and I still would go walking 4-5 miles every day... and kept telling myself to quit being such a wimp
Fast forward to the completion of 8 months of chemo and 6 weeks of daily radiation and all of a sudden I couldn't do the walking anymore. I blamed it on the arthritis which had gotten worse because of the chemo...but as time has gone on, there has been more pain. The nerve damage/neuropathy in the feet/shins. Then it hit the lower back. Neck and arms are affected to.
Well, today I got a new diagnosis (new to me). I have CPS (Chronic Pain Syndrome) which is not uncommon if someone has had a severe injury or from cancer treatments. Who knew? It is complex and hard to diagnose but my GP is pretty sure I have it. It is different than Fibrolmalygia in that CPS mostly stems from the central nervous system. Nerve endings are sending "pain messages" to the brain... in my case, from all over the body, not just the feet/shins. These are damaged nerves from the chemo.
My doctor has given me a 5 day sample supply of "Tramadol" which is a monoamine uptake inhibitor and centrally-acting analgesic, used for treating moderate to severe pain. I was doubtful. I've been in pain for so long, it's now affecting my sleep and what I can actually do physically. Heck, walking to/from the car has been a challenge, let alone getting in/out of it. Tramadol is to be taken 1 pill/day. I took one shortly after I left the doctor's office.
About an hour or so later, I couldn't believe it!! I'm not totally pain free but on a pain scale of 1-10, my ongoing pain level was about an 8.5... and I just continued doing what I had to do, even with the pain. After taking the pill this morning, my pain level has probably been about a 3-4... huge difference.
I thoroughly enjoyed working at the theatre office today and now (keeping fingers crossed) am actually getting excited about the summer shows. I may be relatively pain-free for the whole summer!! Chemo free and Pain free... there's actually a possiblity this will be the case!!
So I'll be sure to keep everyone posted as to whether I get to have a "normal" summer. Well, the not normal thing would be that I get the summer off... I won't actually be working my day job (for the government)... but able to spend the whole summer in the most gorgeous park, working on two Broadway shows at an outdoor theatre that seats 1500 Now how normal is THAT???
Huggggggs,
Cheryl
Hi Cheryl,
I'm sorry to hear about all the pain you deal with, but glad to hear you got an actual diagnosis and something that can help to control it. Although I've been feeling pretty good and am enjoying many "normal" days again, it's relative in that I do also experience many aches and pains. I've sometimes wondered if I have some kind of fibromyaligia or something like that that's come on since chemo. Never before did I have such muscle aches, as well as some pains in joints. It's not like that everyday, so it's definitely not as severe as you describe so I don't think it's CPS, but it's very real many days. Some days I feel like I'm sore from head to toe like I ran in a marathon or had a very hard workout, when I did absolutely nothing that I should have gotten sore from. It's weird. I wonder if it could be some kind of nerve damage from the chemo (oxy?), or if it's some other kind of ailment like arthritis or fibromyalgia that's come on.
I talked to my Dr. about the joint pains & had bloodwork done for rheumatoid arthritis (my mom has that), but it all came back normal. I really didn't talk to the Dr. about muscle aches. I kind of thought it could be from the chemo, but am not sure. Any ideas about that? How do they test for something like fibromyalgia? It seems like I remember hearing that's something hard to diagnose.
Well, hear's to our new "normal"! Cheryl, I'm so glad you've gotten the pain under control and can enjoy the outdoor theatre- it sounds great!
Lisa0 -
Normal
John,
Isn't 'normal' just wonderful? Today I went with my 17 yr old son (junior in High School) to a college visitation day. Just normal stuff, 73 degree sunny weather, time with my son and husband, lunch out.....all in all a perfect day. I'm sure many parents were anxious to leave and get on with their lives. I enjoyed every minute of it, even when I had to sit downstairs during one of the presentations because I was too tired and sore to make the stairs. I walked most of the campus with my son and didn't need the scooter at all. We talked about what he liked and what he didn't, what he's looking for in a school, career goals, goals for the next 4 yrs, 'normal' stuff. Yeah!
Kimby0 -
Lisalisa42 said:pain
Hi Cheryl,
I'm sorry to hear about all the pain you deal with, but glad to hear you got an actual diagnosis and something that can help to control it. Although I've been feeling pretty good and am enjoying many "normal" days again, it's relative in that I do also experience many aches and pains. I've sometimes wondered if I have some kind of fibromyaligia or something like that that's come on since chemo. Never before did I have such muscle aches, as well as some pains in joints. It's not like that everyday, so it's definitely not as severe as you describe so I don't think it's CPS, but it's very real many days. Some days I feel like I'm sore from head to toe like I ran in a marathon or had a very hard workout, when I did absolutely nothing that I should have gotten sore from. It's weird. I wonder if it could be some kind of nerve damage from the chemo (oxy?), or if it's some other kind of ailment like arthritis or fibromyalgia that's come on.
I talked to my Dr. about the joint pains & had bloodwork done for rheumatoid arthritis (my mom has that), but it all came back normal. I really didn't talk to the Dr. about muscle aches. I kind of thought it could be from the chemo, but am not sure. Any ideas about that? How do they test for something like fibromyalgia? It seems like I remember hearing that's something hard to diagnose.
Well, hear's to our new "normal"! Cheryl, I'm so glad you've gotten the pain under control and can enjoy the outdoor theatre- it sounds great!
Lisa
Lisa,
What you are describing sounds more like chemo related stuff that fibro. As least for me, the fibro is everyday although over the years has had periods of 'remission'. Any stress or health issues brings it immediately back on a daily basis. If you are concerned though, see a good rhuematologist. I know chemo can cause what you describe but as a fibro sufferer for many years, don't hesitate to get evaluated and treated. There are things that can help.
I hurt most when I move the least. Exercise really helps - walking, swimming, yoga and pilates are best for me.
Make sure you get enough sleep, even if you need a nap.
Hot water helps! Long baths or soaks in a hot tub really, really help me. If it is really bad I'll go to bed and use my electric blanket on high - a whole body heating pad.
I'm on Lyrica and Effexor for pain with Darvocet for the really aweful days. There are other options but this is what works for me. I usually use the Darvocet more for the spinal arthritis than the fibro, but sometimes it's hard to tell where the pain originates.
HTH - and go see a rheumatologist!
Kimby0 -
Lisa and Kimbykimby said:Lisa
Lisa,
What you are describing sounds more like chemo related stuff that fibro. As least for me, the fibro is everyday although over the years has had periods of 'remission'. Any stress or health issues brings it immediately back on a daily basis. If you are concerned though, see a good rhuematologist. I know chemo can cause what you describe but as a fibro sufferer for many years, don't hesitate to get evaluated and treated. There are things that can help.
I hurt most when I move the least. Exercise really helps - walking, swimming, yoga and pilates are best for me.
Make sure you get enough sleep, even if you need a nap.
Hot water helps! Long baths or soaks in a hot tub really, really help me. If it is really bad I'll go to bed and use my electric blanket on high - a whole body heating pad.
I'm on Lyrica and Effexor for pain with Darvocet for the really aweful days. There are other options but this is what works for me. I usually use the Darvocet more for the spinal arthritis than the fibro, but sometimes it's hard to tell where the pain originates.
HTH - and go see a rheumatologist!
Kimby
I agree with Kimby, Lisa... it sounds like your pain is chemo related. And yes, it could be CPS because one of the possible causes of CPS is chemo treatments... gee, go figure, eh??
I have gone the gambit with tests and what not. I did see a rheumatologist (Lisa, that's the word I couldn't remember how to spell in the PM I sent you) and they ruled out RA for me.
Ooooh, Kimby... I would love to be able to have long, hot soaks in the tub! But alas, the arthritis in my knees won't allow me to get into the tub. Well, correction... I can get INTO the tub... it's getting out of the tub that's the problem since I can't bend my knees enough to get out. So, it's hot showers for me... or, when luck has it ... jacuzzis and hot tubs
Another interesting difference... when I'm moving, that's when the pain becomes more pronounced... yet, when I'm resting, then the neuropathy/nerve pain in the feet/shins becomes more pronounced. So whether I'm moving around or being completely still, there's always a pain of some sort happening. But today was Day 2 on the Tramadol (combined with Tylenol #3 with codiene). The pain level has definitely gone down... from an 8.5 to a 3-4
Ok... time for me to hit the hay! Nitey-nite!
Huggggggs,
Cheryl0 -
we had normal today
Great post. We had normal today too, actually fantastic. **** surfed this morning and we went out on our little boat. It was beautiful today! **** had his 3rd round of Folfox Tuesday, he had nausea but he feels better on and in the water. It was good to have a normal day as our youngest daughter spent the past 9 days in the hospital for seizures and constipation. She got out yesterday. Normal felt good today.
Aloha,
Kathleen0 -
Cheryl
Hello Cheryl,
Just read your "little bit long" thread...:) Anyway, I've read your on Tramadol which is good. My mom used to be on that too (bit bigger those: 2 times a day) with Cerucal. It helped her a lot too for a while.
Well, just so that I don't go off topic: we had a "normal" day too...and I even could make my mom WALK outside the porch and sit there for an hour....I was so happy, I almost opened a champaign! (those of you who don't know, my mom usually just in bed sleeping, or being awake in bed but crying)
So, I loved today!
I wish you all the best~
Sophie0
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