Radiation recovery
Comments
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kate, sooooo sorry. i am in your pocket with you through whatever!!
mostlysew, so sorry for you too. what kind of late rad pain is to be expected??? yikes! please feel better soon soon soon.
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I'm just checking in again. I am up to #3 now. Nothing to report yet. I'm still a newbie.
Mostlysew, I feel for you. I know this pain all too well. Mine comes from inflamed sternum/breast plate (costocondritus). Mine is a side effect of fibromyalgia that I have had for many years. Those nerve endings play with you and come and go and are so sharp. Mine can last for up to a 1/2 hour or more. Now with my rad treatment I'm dreading bad flare ups. Hang in there, hope they eventually go away.
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Pat01
Thanks so much for the website on frozen shoulder.I have been having this for the last month or so.I finished rads end of May 2011.It is so sore.I will try these exercises.Hoping they work:) thanks again for posting.
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MostlySew........I am so sorry these pains are increasing. I hope you don't have any more that last so long. How scary. And frustrating of course. We keep finding more and more things that come after treatment. My LE so far is not being treated and this worries me. Still waiting for my RO to make a decision. I see him next week.
Kate hope you are feeling better and get some relief.
Wishing a great day for everyone. Hugs all around.
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Hi Janis,
Thanks. And I'm sure your RO will finally treat this suspected lymphadema next week when you see him.....then you'll get some relief. At least that's what I'm praying for!
And thanks everyone else for your kind thoughts. We all go thru some amazing things, don't we? Who ever knew!
And ...... Eat your heart out ladies.....I'm leaving tomorrow for Maui for a week! Oh boy! Ostensibly going to help my 94yo mother get herself back home, but I intend to play while there....lots....none of this cancer, nerve pain etc. etc stuff for me! Just sun, surf and knitting......you all can join me in my pockets if you like........
Be well everyone....0 -
I'll be meeting with my RO tomorrow and will start rads soon. I understand the TX causes fatigue. Is this something that starts sometime after each session then eases up later in the day, only to have it start again after rads the next day? Or is this a constant fatigue that lasts all the time until you are done with radiation? I was asking because I was wondering if it would be better to get the treatment in the morning if the fatigue appears later in the day, or if I should get it later in the day so the fatigue appears later in the evening and I can recover overnight and be fresh in the morning? I hope I'm making sense here....!
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Thank you truebff. I had a 9:30 appointment with my surgeon this morning, and I am going to be admitted into the hospital to get iv antibiotics for a bad infection. If the antibiotics don't work I will have to get 1 implant taken out. That will look great yuk. I will have to wear a prosthesis.
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Oh Kate, so sorry. Know that there will be the other side to this.
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Mostly sew I hope you have a great vacation. Enjoy, you deserve it.
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Thank you truebff I am trying to stay positive
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Snoopsmom, about five or six hours after radiation there is some fatigue. The RO said that the body is fighting the damage done during radiation and that's when the energy store are depleted. Hope that makes sense and helps. It seems to cme alittle further in about a third of the way through radiation,, so I wouldn't expect it right off the bat.
Katehudson25, Hope it resolves quickly. Good luck.
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Thank you ptdreamers. I am still waiting for my doctor's call to go to the hospital
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Kate....so sorry you have to go through this. I sure hope the antibiotics do their job! Keep us posted please. Soft hugs.....
Snoopsmom.....I had so little fatigue with radiation that I cannot really answer your question. I had more problem with fatigue after I was finished. I am sure it is different for everyone. I had mine scheduled for the morning and usually felt fine all day. I wish I could be more help. Much luck to you!
Irw333.....I am hoping you are okay, I have not seen you post in awhile. I left you a message last week. Please know you are in my thoughts and PLEASE let us know you are okay. I know you were really worried about the upcoming gall bladder surgery. Hoping all is well my friend. HUGS!
MostlySew.....How wonderful you are going to Hawaii. You just have a fantastic time, and remember...BC is not allowed to come. Do not pack it in your suitcase. Just enjoy your vacation, BC will still be there when you get back. Right now though, too bad. It stays home!
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ptdreamers and justmejanis - thanks for the info. I would rather go first thing in the morning so I have the rest of the day to myself. But I guess it will actually come down to what times they have available. Fortunately I'm retired so if I do get really tired I can just stay home and take it easy, but hopefully I won't have much of a problem.0
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I did 6 weeks of rads - the radiation center was very accomodating. I told them I wanted first thing in the morning and i was able to keep the same schedule for the 6 weeks. I worked during the whole time, Just going into work late every day. I didn't really start feeling the fatique until about the third week. You are lucky that you are retired. You can just take a nap when the fatique kicks in.
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Snoopsmom - I think you should pick the time of day that works best for your schedule. I'm retired too and I picked right after lunch. I ddn't want to deal with rush-hour traffic on either end, but give myself big chunks of time before and after.
As others have mentioned, the fatigue sets in after 3-4 weeks, not a matter of hours. I never needed to nap, but made a point of taking it easy. Have you found the monthly radiation threads? Our group was great for keeping up my spirits. By this point, I found my "real life" support circle was running out of steam, so it was great to have people to share with online. There is also a lot of good coping information stored in those threads.
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It can wipe you out so end of day was better for me - and then r + r with dh.
After it was ALL over, was when The Tired really got me (after the boost).
But even then, it didn't prepare me for the month after finishing... (my first month was okay -paced) when I hit the exhausted/weak wall. Dealing with that now. Still exercising, but respectfully and slower, needing to *p.l.a.n.* anything and everything from exercise to appointments through The Tired.
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Oh, yes - truebff - The Big Tired hit about a month AFTER it was all over - and lasted about 3 months for me. I too continued exercising regularly, but had to "p.l.a.n." anything and everything. Very descriptive way of putting it, truebff!
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kate-I am so sorry that you are having to go back in the hospital. I'll be thinking of you. Hugs.
mostlysew- Sorry for your pain, but happy about your vacation! Enjoy Maui. If you like snorkeling, try Molokini crater. Spectacular.0 -
Kate, so sorry you are having complications. I am praying you heal from the infection and that will be it. Hope you can keep us posted on how you are doing.
Mostlysew, enjoy your trip and soak up that healing sun.
I too was hit with the fatigue after the boost treatments. It was intermittent after that for about six weeks. It goes away slowly, from my experience, and it is a time to take an extra nap or a breather a little more often. My thyroid was knocked out of whack too. I had been hypothyroid for years, but now I am more so. And my wbc was low. I am about to get re-checked on those things in a week or so. I hope things are getting back to normal.
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I finished my rads last summer and yes....I was very fatigued and burnt. I found chemo to be okay but the rads were a little harder...but doable. And yes, I am hypothyroid and it really went out of wack! My insurance company called me right after radiation and cut me off when I was feeling really bad. Can you believe that?
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GabbyCal, Thanks for the creds. It's hard when it seems to be your "lone" experience.
Today I had a bad day. I went to see my regular doc and asked her to get my Chinese med doc's request for blood testing. She said most of it was unnecessary and wouldn't be paid for by my insurance or justified because at U of MICH everyone knows that you won't be right for a year after rads so why test? Also, my concerns about the tightening... She said: they saved your life, did you expect them to tell you it would have side affects? Before she was more sympathetic, but not so much this time. Like I might have lost another soul I was depending on. sigh...
There IS a breach between alternative and Western medicine that breaks my sense of connection. Like they don't trust each other or are on different sides and,hey, I am just a little woman in between, trying to find my own best advice and remedies.
My family doc had been my "in between" sounding board before. Now I feel so insecure.
Because I don't want to go "Western" all the way (IAs), should I now start to prepare to be alone in space? I wish the two sides connected better.
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Hi everyone, Today, I met the most amazing RO. My original RO died from a heart attack two months ago so I had to start with a new one for my follow up. This RO was so open and caring. He asked how I was doing in a manner that let me know he really wanted to hear my answer. When I told him I felt all right physically, he immediately picked up that I had other issues and asked how I was doing emotionally. I felt this huge weight being lifted off my shoulders because finally someone understood and cared. He likened the survivorship period to a soldier's PTSD after war. He set me up with a support group before I left his office. Also, I told him I was concerned about lymphedema because my left arm looked swollen to me and just did not feel right. Well, I already have an appointment with a LE clinic. What a fantastic RO!0
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Wow, Elizabeth. When you get the golden goose, yeah!
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True bff- I went to U of M for a second opinion and ended up in a screaming match with the oncologist aka bitch from hell. She was so insensitive it was unreal. I never scream at anyone but she got blasted on my way out. She also tried to refuse giving me back my images I had carried in. Said she would send them back to the place from which they came. I had to cause a scene to get them back. "Nasty" is an understatement.
Elizabeth- I have a ptsd diagnosis from all this too. If you think about it... If some monster came to us, cut off our breasts, burned us, poisoned us for months, shaved our heads, and said it is likely they may be back some time in the future, there would be no doubt about PTSD.
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Merilee, that's unforgiveable that they should treat you so badly! I'm wondering, in Lansing, if you have found alternative or open-minded-about-alternative docs?
The doc I saw yesterday was my family doc. I loved my breast surgeon here. He was my hero doc. My RO was a robot. My MO is pushy and tries to work it like he's friendly, but his agenda is huge for the clinical studies and the research and the hospital research funding. I don't even think he sees *me* in the room. I do have to say that the nurses, technicians, aids, PAs, etc. at this cancer center have been completely completely awesome kind and caring.
It is hard for me to know which medical docs I might be better switching to that my insurance will agree to pay -if I change things up- that might be a better fit for my eastern AND western approach. I am however, exhausted by the process of moving systems. I moved from one hospital to this one right after first being diagnosed.
Does anyone know how to find a Medical Oncologist who would be open to alternative support too, without ruffling all the establishment feathers (ol' boys' club) in the medical profession?? I'd love to know. Thanks.
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Merilee, Thanks for such an apt description of why we have PTSD. How are you doing now? We have not heard from you in a while.
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Elizabeth- Congrats on finding such a good RO. Good doctors are worth their weight in gold. Wish I could find some good ones in south, south, south, south Texas.
Merilee- Your description...too true!0 -
Cat123, I think your insurance company is horrendous doing that to you. Did you appeal their decision. If you haven't and if you want to PM me, and I can walk you through that process. I used to run a clinic and I learned the more tenacious you are, the more you get from them. They count on people just accepting their decisions.
Merilee what a great description of what we all go through and how we see it. I too am in the throes of PTSD and some days it is really tough. I don't even want to walk into a clinic. I hate it. It helps to see it expressed this way.
Elizabeth, I am so glad for you to have found such a good doc. I need one like that too. Mine is kind and gentle, but very long in the practice and very rooted in tradition.
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mostlysew, so sorry you are dealing with pain! I write for a day-job (or all the time job, really) so am at the computer for long hours. I have costochondritis also and it can be really excruciating! Hope you have a wonderful, relaxing, pain-free trip!
(((((Kate))))) So, so, so sorry you are dealing with a bad infection. Praying for your swift recovery!
truebff, I had a great doc where I lived before who would suggest herbal remedies along with traditional meds, but those doctors are few and far between. I hope you are able to find someone. We moved out of state right before my diagnosis so I don't have a PCP. I have picked one to try, but I don't want to go! If he even acts slightly condescending, I'll be out of there!
I think we all have some degree of PTSD. It has been an incredibly stressful year. Hoping the next year is full of joy and peace!
Blessings,
Steph
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