still trying to get to the bottom of this, i know everyone is different but…
those of you that did not have chemo,and had not started the tamoxifan whilst having chemo–how tired did you get. And what sort of tiredness was it, people talk about having a nap, so is it sleepiness or is it a physical tiredness.
i have arranged to do nothing all month exept daily drum practice and weekly gigs. I can go to bed during the day before and after gigs, in fact if i need to i can stay in bed when not at the studio or hospital.
Had 25 rads to breast area and 4 to pelvis to zap ovaries. Was off from work whilst having rads although some people carry on was fine for the first three weeks so did all the usual pottering about.Week four and five got more tired. This tiredness seemed to turn to fatigue and got worse for a while after rads stopped and I returned to work. I had a sit down at some point in the day when I was tired but mostly carried on as normal apart from not being at work. With hindsight I would have had a few more weeks off after rads had finished. Actually having the rads was fine.
Had 25 rads to breast area and 4 to pelvis to zap ovaries. Was off from work whilst having rads although some people carry on was fine for the first three weeks so did all the usual pottering about.Week four and five got more tired. This tiredness seemed to turn to fatigue and got worse for a while after rads stopped and I returned to work. I had a sit down at some point in the day when I was tired but mostly carried on as normal apart from not being at work. With hindsight I would have had a few more weeks off after rads had finished. Actually having the rads was fine.
I didn’t have chemo but had already started Tamoxifen before starting rads. I had 15 rads sessions and was fine throughout and in the weeks afterwards, although I didn’t attempt to work during or soon after treatment. I went for a good long walk each day and also drove over each day to the house we were having re-built, so I could keep an eye on the work (or lack of!). I didn’t need to have naps during the day, and still had enough energy to cook the evening meal when my OH got home.
Having said all that, I was probably doing far less than I would normally be doing when working - drive to work, full day at work (mentally rather than physically tiring), drive home, cook dinner, just the usual stuff, but probably more tiring than we realise.
Spent last night trying to find out more info. Aparantly you get radiation fatigue when the radiation triggers your proinflammatory cytokine network. (did not even know i had one) The measured various chemicals in people who were suffering and found it was this that was causing it.
Interestingly enough from reading more,it seems to be the same network that floors me when i eat wheat-- I suddenly hit a brick wall and cannot do much at all for a couple of days. Stay in bed and watch tv.
Some research shows that exercise can help, even if you do it through the fatigue. I do know that if I am suffering with wheat and have something i cannot get out of then my body can do it, its just my brain telling me not to.
so i will force myself up to the studio for a couple of hours drumming, even if my body is screaming for bed and see how I get on. My chineese doctor is treating me with reishi mushrooms which he says will help, so lets see.
I had surgery, with no node involvement and clear margins. I have finished rads 16 treatments about 3 weeks ago now. It is a physical tiredness more like fatigue really when, if you have even a lot of sleep you still feel tired. That’s the only way I can explain it. I have never felt like this before. It is a really different sort of tiredness. I just hope it eases up very soon…chris x
My son ( a doctor like yours ) told me that the tiredness stems from the body working hard to repair all the damage done by chemo and radiotherapy. I know you are not having chemo but the radiotherapy is damaging too. It is a physical tiredness not due to lack of sleep, although in my case that doesn’t help. Certainly mind over matter plays a part. Your drumming exercise will help I’m sure. I try to go for a walk even if I don’t feel like it. “Everybody is different” seems to apply to everything to do with cancer, breast or other, but I’m sure you will find it is not as bad as you are anticipating.
Diana
Well, when I was due to have Rads I expected to be tired so visited a hotel near the hospital and planned to stay in the area for the last week of Rads. I know we are all different but honestly the only thing that made me tired was the long journey to the hospital every day. Don’t get me wrong, I was very tired after the chemo but did not get any worse with the Rads.
I do wonder if it was a case of mind over matter as I realised that rushing around can make one tired. So, I got to the hospital, got a cup of coffee, went and signed in and waited for my turn. Drank my coffee and chatted and did some puzzles, had my Rads and then went to the pub nearby for lunch. It did take a chunk of of the day but that’s what I had decided to do and for me it worked. I did not need the hotel.
I know that I was lucky but maybe you will be too.
the rads team told me there was nothing in the treatment to make you tired, but that waiting around and disrupting your day and trying to fit normal activity in was what got to you. so perhaps your deliberate change in routine worked. in which case my deliberate bed rest might do the trick
I think your plan sounds really sensible. Even during chemo I just followed whatever I needed to do and if that meant I had three naps a day, that’s what I did, and didn’t get worried or stressed about it. I actually managed to take my own advice and just “went with the flow”.
I’ve had my first rads today and intend taking the same approach. Fortunately both my jobs (yeah, I know, not a good plan!) know that I might be feeling a bit tired with all of this so they don’t expect a full week’s work out of me, which means that if I need to make up time, I can do so when it suits me. I expect an afternoon nap will be very welcome on days when I’m not in the office, but I’m hoping that if I can listen to my body I can reduce the amount of physical - and mental! - stress can be kept to a minimum.
The drumming sounds like just the ticket for you. Fun, exercise, and maintaining flexibility. Triff!
day 10 of rads and 7 to go , feel fine but a little tired cus of the travelling ( 3 hour round journey ) and also i feel because of the night sweats bought on by the tamoxifen , if i manage a full nights undisturbed sleep i am so much better during the day , i have to confess tho i`ve never been one for lots of exercise but i daresay it would prob help xx
After six months of chemo I had 25 sessions of conventional rads to the mastectomy site, lymph nodes and neck, and frankly it was a breeze after the experience of chemo, and I didn’t feel tired at all. The only radiation tiredness I experienced was when I had Cyberknife Stereotactic rads for my skull mets, but unlike conventional rads, which lasts a few minutes each session, over a few weeks, Cyberknife treatment last 2-3 hours per session, over jsut a few days, and is given at a much higher Gray than conventional rads (cyberknife is given at a curative dose).
No chemo but I was on aromatase inhibitors when I did the rads, and to be honest I felt a bit of a fraud for taking time off work. I kept waiting for the tiredness to hit but in the 4 weeks duration I dozed off in the car home once - and as I do this regularly anyway that was unremarkable. I had started doing more exercise before the surgery and kept it up during the rads, even more probably with all that time off work. We’re all different, and I guess I was very lucky, but hope you are too. Now its the AI’s that are my biggest problem, I seize up like a very old engine any time I sit or sleep.
I noticed on another site you recommending the Susan Love book - isn’t it good? Did you get the most recent edition? Mine is heavily highlighted with all the bits that made me feel better and I often go back to those bits when I feel a bit wobbly.
S
hi ethlydysl, we start on the same day, i am having 15 plus 5 boosters.
sheil–i too have uped my activity too, hoping that it will get me fit before I start. Just read about emu oil on another site, and have got some of that --hoping it will help with the burns. It has certainly helped on a sore joint I developed when playing with the dog
Me again - I also had very little skin reaction. I had bought in big tub of aqueous cream but only had very slight pinkness towards the end - I could see the white bit in the middle where it didn’t touch, and a little bit more under the boobs, but nothing I could say was near irritating. I worried that as I’m Scottish white with freckles and burn in sun I would get some reaction, but lady who I travelled with and tanned well got it lots worse than me. Think it may be that my skin has had little past sun exposure. I chucked out the cream last night - hardly used it and didn’t like the smell anyway. I also worried about going on holidy soon after, but I just wore sleeveless shirts buttoned quite high and that went fine.
Tell me more about the emu oil - do you think it might help with my old joints?
I had never heard about emu oil till i saw it on one of these threads. The aborininees used it for burns and wounds and other medical stuff. Sounds a bit like snake oil to me, but it says it penetrates deeply, has no chemicals, detergents,perfumes,parabens etc. I did read that some rugby team were using it as a muscle rub for aches. It is supposed to be good for joint and muscle pain.
I have bought some of their shampoo and conditioner too. I am worried about my shampoo having so much junk in it. I dont use soap else i might get the soap too.
A bit hard choosing one of the millions of suppliers on line–how do you know it is what it says it is? The could put some olive oil in a bottle slap a picture of an emu on and sell it to you. So I probably paid up a bit and picked a reputable looking site.
Hi hun I think I may have told you mine before but its so true we all seem to be different, throughout my 3 weeks I was tired but also took into concideration the journey was a long hour + there & back. I found by the time I was half way through week 2 there was a couple of real hot days & I felt a real tiredness could have quite easily fell asleep standing up, I just felt wiped out completely on the last day of week 2 then on week 3 wasn’t too bad I had the tuesday of that week feeling wiped out, couldn’t concerntrate whatsoever so didn’t even try.
both my onc & I concidered me to be quite fit, I drunk loads of water throughout got good nights sleep (early) & I slept like a log I ate well & kept active as much as possible but when I neded to STOP & do nothing I did just that … a tornado wouldn’t have shifted me lol, I was quite short tempered & ratty too but this was also because I am going through menopause & I was suffering the SE of that which didn’t help.
Just be good to you dont try to push yourself if you really dont feel like it, the last thing you need is to make yourself ill, I know a few ladies that found on the days they felt ok they tried to do the usual things around the house then paid for it the next day me included.
I have just finished 3 weeks of rads and to be honest didn’t feel anymore tired than normal I am having chemo at the same time had 2 lots during rads and have not felt any more tired at all. My hospital is only a short drive though so didn’t have lots of travelling every day. I used the aqueous cream 3 or 4 times a day and have redness but not too sore just as if overdone sunbathing a bit nipple is sore but the cream soothes that. I didn’t use deoderant all the way through and only used simple soap in the shower Have not got any hair so shampoo was not a consideration. It really isn’t that bad I am sure you will be absolutely fine. I did walk my 2 dogs every day and have 3 horses that I bring in and feed every day and never missed and really never didn’t feel up to it. The worst I found was sitting round at the hospital waiting!!!
I was also in work for 3 hours most days except my chemo day and the following day.
Jill