Just wondered how everyone felt energy wise. I finish 6 FEC five and a half weeks ago. It took me about four weeks to recover. But I still have off days. I can be fine in the morning but suddenly I feel tired (and kind of breathless - have to lie down to make it go away. Feel too tired to talk or answer the phone or anything.)
After rest I get up and go again.
I have now had two weeks of rads.
I haven’t bee working during chemo so all the driving back and to to the hospital may be all too much for me. Just strange to feel lively in the morning and then suddenly knackered.
Apparently the rads can make you feel really really tired by the end. I was hoping to go back to work soon after the treatment finishes.
I just read that tamoxifen can also make you feel tired so that probably isn’t helping.
Hi Lorna
I had 8 chemos from Sept to Feb and then had my op. in March.
Have been gaining more strength slowly. This week I started rads, I have to have 13 sessions. Also started Tamoxifen this week.
So far so good and I have not felt too bad. I must say though by the evening I am shattered and have been going to bed very early.
Just be kind on your self and give yourself time to heal.
Best wishes Alison x
Hi lorna,
i had 6 months chemo then rads for 4 weeks. i was advised by my trial nurse to have a month of recovery after rads before going back to work. It was good advice, i didn’t feel too bad during rads overall but would often need a siesta to recharge my batteries. I then just gradually increased the amount i did and rested if i needed to, i went back to work 5 weeks ago to a busy & demanding job, i’ve done a phased return, occ health wouldn’t agree to anything else, and its been great, i’ve not been too tired, rested when i’ve needed to, not arranged other things on my work days and have really enjoyed being back. Wishing you all the best with the rest of your rads, recovery & return to work. Take it easy, don’t expect too much too soon.
Best wishes, rivergirl x
Hi lorna I started rads just 3 weeks after chemo and I was absolutely exhausted.Needed long rest to get through day.For me it was cumulative but it gradually got better over the following weeks.It was so good to meet you last week.lol horacexx
Hi
I had 6 chemo ending in feb and then started 30 rads 17 march with 7 more to go, gradually over the last 2 weeks ive felt more tired with red itchy skin ( but not sore )
ive been off work since dx last august i had lumpectomy first as it was thought my lump was a enlarged lymph gland then had wle and axc with 7/21 nodes involved, i have also just had 6 out of 18 herceptin, although i feel better than i did on chemo i dont as yet feel either physically or mentally ready for going back to work, i also find it difficult to be out in public im ok going to the hospital and down to my daughters but i havn’t ventured into town for about 6 months, and the thought of going
back to work really scares me so much so that im thinking of not going back, i think im turning into some sort of wierd recluse… any others get these feelings.
Hi Mizzy.
I have been off work since Oct and prob due to go back end July,but scared to hell,I like you feel like a recluse,totally not like me, want to lock out the world and make it go away.I know my family are worried and I need to kick myself up the backside.I am sure we are not the only ones and it will pass.
Mary
x
Thank you all for your comments,
It would be good if the medical people explained just exactly how tired people may get on radiotherapy. I know that everyone is different. I really was led to believe that you could pop out in your lunch break for rads and carry on as normal apart from that. Based on their advice I told my boss I hoped to be back at work during rads as I work quite near the hospital. I am just not up to working yet. I am finding it quite tiring just driving to hospital and back.
Alison - I take it you are not working.
Hi Rivergirl - did you actually go back four weeks after rads finished then? Sounds like you have managed it really well.
Hello Val, I am feeling quite good most of the time, but when the tiredness hits there is no choice but to lie down. Lovely to meet you too and look forward to the next one!
Mizzy - My chemo ended in march and I started rads three and a half weeks later (only because I was on holiday. they wanted to make it 2 and a half.) My herceptin will start around 4 weeks after rads finishes. I will have one every three weeks for 18 sessions.
You say you have already had 6 herceptin. How frequently are you having those then and when did they start? Also, what chemo did you have? Sorry for all the questions.
I don’t exactly do out much. I can’t seem to face going into big shops and just pop quickly into my local co-op. I think I know how you are feeling. My plan is to go into work for a coffee to have a chat with my boss and get that out of the way. Then maybe start part time. I was also diagnosed last august and have been off work since.
Mary - you might be right. I cut out the world when i felt really bad but as I feel ready I am doing more. I didn’t even want to watch the news or read a paper but I find I am taking more interest again. which must be a good sign!
Hi Mizzy, I have three more Cmf to go then 5wks of Rads. I just want the world to disappear and shut myself away . My new grandaughter (first) was born five days after my first chemo I was in hospital with Pancreatitis , I feel so cheated at not even having the energy to take her out in pram. I am getting very bitter and do’nt like myself for it… Having been agorophobic once I don’t want to be again. MY youngest son is getting married Sept and I am dreading it, don’t know how i’m gonna cope , especially with panic attacks coming back again. SO I understand where your coming from. I feel scared 24/7 . Not very positive BUT you are not on your own with these feelings. Lots of love BobbieXXXXX
I think you just have to take it as it comes… everyone has a different experience. I’m happy to report that I never suffered from fatigue, during the 6 months of chemo and 29 sessions of radiotherapy. I managed to work through most of the treatment, and never let it get me!! I was able to carry on working through all the rads… it’s a real hassle having to trail in and out of the hospital, but then my work involves a lot of driving around anyway, so it wasn’t that unusual an experience for me… just a different location. The skin held out OK until the last couple of weeks, when it got a bit of a mess, but again on a positive note, once the treatment stopped, it cleared up totally within a couple of weeks and I didn’t have any after-effects in the following weeks.
I truly hope your experiences are the same as mine… take care,
AliS
My chemo started in Oct i had 3 x Fec and then 3 x Taxotere finishing in Feb then started Rads in March, my 1st Herceptin started with my 1st Tax and like you im having 18 every 3 weeks, im near the end of Rads now and i must say it has flown by, and i think i will feel better when i get my hair, eyebrows and eyelashes back (just to look normal) in the last week my hair seems to have had a kick start and i can now see a covering of dark and grey, how is your hair doing?..
Mizzy xxxxxxx
Crikey! I’ve told them I’m going back to work just after I begin rads…just finished chemo and feel really full of beans. Maybe running before I can walk? Boss is very understanding, will cut my hours right down if have to.
Sorry about how you are feeling Bobbie, I still get those panicky things, always in the morning 4am onwards! Hope that baby girl takes your mind off your worries - my grandchildren have been the best medicine of all
Love to all of you, Zoe xx
Hi Lorna,
yes i did go back 4 weeks after the rads finished. I had xeloda for my last chemo which didn’t knock me about half as much as the epi, i had 3 weeks between my last xeloda cycle & rads starting. I didn’t really have too many physical effects from the rads, i used bio oil & aqueous cream lots and didn’t get too sore, the tiredness ? from rads ?from finishing chemo was helped by a siesta each afternoon.I howled throughout my last session tho, i felt so emotional that last week of rads, crying at the drop of a hat. I did a phased return and only did a few hours for the first couple of weeks, but i’m now on leave for a week having had 5 weeks back which i’ve coped with much better than i thought i might. The weeks leave is being somewhat marred by the fact i had my first mammo on the 11th & i’m waiting for results which is doing my head in at the mo, i’d probably be better off busy at work this week, as it is i’m having to plan a 60min makeover for my bedroom to try and distract myself (not easy).
Hi mizzie, maryfrod & corsa,
I had a couple of counselling sessions (organised through my GP) before i went back to work & they really helped me, i just howled through the first one, getting rid of all the pent up emotion from the previous 9 months i think, got all my worries out in the open, i felt much better after that, i found the 2nd session helped me to put some things into perspective and the counsellor kept the option open for me to see her again if i needed to or ran into problems going back to work.Its so horrible feeling so overwhelmed with everything that you used to do without thinking. I have been able to cope with work better than i thought but think it would have been much harder if i hadn’t had the counselling. It may be worth you trying to access some sessions. Wishing you all the best and hoping things get easier for you,
Thanks Rivergirl
My bc nurse has mentioned counselling so may take her up on it. I have worked for my company for 18 years and they are really good with me, so seems stupid to be apprehensive really, but its surprising what this can do to you mentally.
Take Care
Not stupid at all mary, very very understandable. I’m glad you have good managers, mine is too, very supportive. just take it really gradually, i only did 3 hours to start with, and i also went in just to have a coffee with colleagues before i went back properly so i’d already seen them. They will no doubt just be really pleased to see you back & well.Better to do a little and build up your confidence than too much and end up overtired. Wishing you all the best, keep me posted as to how you are doing. I would really recommend the counselling. Also if there is a look good feel better workshop near you go for that to, that really helped me with my self esteem, one colleague said i looked like a model when i went back to work, i never wore make up before this horrid cancer so you just never know!! could be a good pre work boost.
Take care,
rivergirl.
I go in to have coffee about once a month with other managers,and colleagues and my company operates a phased back to work any way,Also as it can take me 45 mins to an hour to get there,meaning a poss 2 hour extension to my day they are already looking to re- locate me nearer to home.I am looking to get back towards end July.I will look into the look good feel better workshop,
Thank you