When to go back to work

Hi. I’ve been off work since last November. Originally I planned, at my manager’s suggestion, to go back to work in February while I was still having chemo, with a very generous 3 months phased return. This was firmly refused by Occupational Health and they told me they didn’t want me back until I’d finished radiotherapy. I was really relieved to be told that as by then I was being treated with Docetaxel and I’ve found the after effects truly horrible.
Anyway, I finished chemo four weeks ago - still feeling exhausted and aching limbs - and I had my first appointment with the consultant to plan radiotherapy. He told me I’d be having 3 weeks Mon-Fri. I asked when I could reasonably expect to go back to work and he said he would encourage me to go back as soon as possible. I’m seeing my GP tomorrow as my sick note runs out and I don’t know how long I should ask him to give me another note for. I want to go back to work but not feeling the way I do at the moment.
Another thing puzzling me is I’ve been given an appointment for my first radiotherapy and it’s for Tuesday 16th July and I don’t see how that fits in with 3 weeks Monday-Friday.
Advice some someone with more experience would be much appreciated.

Hi Likeslilac
My advice is don’t rush back, wait until you feel well enough. RT will make you feel tired and might make you sore so see how you go with it. Whatever you do don’t flatten your batteries, know when to rest. An old district nurse gave me that advice just before I started my RT and it was some of the best advice I was given.
RT always seems to start mid week. Mine started on a Thursday, if you’re having 15 sessions you only have one full week to do so that’s an advantage.
Make sure you take good care of yourself. Treats and pampering all the way
Hugs J xxx

Sorry 2 full weeks. Brain not working this morning. J

Thanks for that, Jan - don’t know why I’d got it fixed in my mind that I’d got to start on a Monday.

I had the full works, chemo, surgery and rads. I had 4 weeks of rads, 20 sessions. I also started mid-week, so finished mid-week. I finished mid June last year and went back to work mid-August. I work in at a law firm in London and have a commute of an hour each way. I didn’t have a phased return, just went back full time. At first I was bone tired by the end of each week even though I felt generally well. I was still having Herceptin so this obviously didn’t help. Every month of so I would find that I needed to do a 4 day week and took a Friday, which work were fine about.
I finished Herceptin in February this year and really notice how much better now I feel.
Don’t feel rushed into going back. Think of it this way, if you were taking maternity leave you would be having a fully 9-12 months and thats without any poisonous treatment such as chemo.
Sam

Hi Likeslilac
So, well done that you’ve got through the chemo and all credit to your OH for refusing to rush you back to work.
I started radiotherapy last week (6 down, 14 to go not that I’m counting) and like you, I assumed I’d start on Monday. However, the Monday to Friday bit is that you have your treatments on weekdays. So I get the weekends off (presumably for good behaviour?)
I’m trying to work but am physically and mentally shattered; I don’t know whether it’s the treatment or the daily disruption of going to the hospital or that I still can’t quite believe my wonderful medical team haven’t got my records mixed up with someone else’s. How about getting your GP to sign you off until July 16 + 3 weeks and take it from there? Probably I should be taking my own advice!!
Oh, and just in case you haven’t read the other bit of the small print … I’ve been advised not to use deodorant whilst I’m having radiotherapy so I feel a lot like Stinky Pete. Sorry to be the bearer of that bad tiding!
Hope this helps -
Audrey

Hi,
Im not really in a position to comment as still having chemo. But I’d been told that the tiredness can really catch up with you a couple of weeks after finishing rads. have you got hormone treatment following rads? You might need to see if you have any side effects from those. From other things I’ve read and from other acquaintances experiences, it is not unusual to have a year off with this b of a disease. I think I would ask doc for a note for 3 months, and that will give you a month to get over rads and see how hormone stuff is going if you are having it. That all sounds a bit bossy, but I too get the collie wobbles when it comes to taking time off and I need others to help me make a decision. You have been through an awful lot, you need to give yourself time to recover, don’t rush back and be kind to yourself!
Love Gaynor x

It was nice to hear from someone who’s sort of at the same point in treatment as me Audrey - hope you’re not pushing yourself too much going to work. I know I sound as if I’m looking for excuses but Gaynor mentioned hormone treatment and that’s set me off worrying again. I’m due to start on Anastrozole tomorrow and I’ve been trying to push that to the back of my mind. I know some women don’t get major side effects but there again I’ve heard a few horror stories as well. I’m aching enough as it is. Perhaps it would be best asking for a note for 3 months. Decisions … Decisions. (You wouldn’t believe my work colleagues see me as calm, reassuring and a sorter-out of problems - must be chemo brain turning me into a wobbly wreck)

Hi Gaynor - please boss away! I’m very good giving advice, but forget to take it . I’d also forgotten I still have the delights of Tamoxifen to come - my brain’s functioning at the same level as a gerbil (and that’s not normal). Welcome to new normal? May be that I’ll learn patience, calmness and tolerance out of this?
Likeslilac - oh dear, please try not to get into a worry spiral. How about a 3-month note and if you feel better sooner, negotiate for an early return? Keep us posted; Ive lurked since my diagnosis March 28 and find it reassuring that I’m not alone on this horrid journey.
Have a lovely day and I shall think of you both when I go to the hospital later.
Hugs
Audrey x

Hi there.
I finished my radiotherapy in October last year, but I didnt go back to work until March this year. I took exactly 365 days off. As you say, Docetaxol is horrendous. And the radiotherapy is exhausting. I dont know what you do for a living, but Im an Oncology staff nurse (at the hospital where Ive been treated) and I know I could never have coped going back before I did. Plus, I wanted to have hair before I went back. I didnt want to go back in a wig. Im still having Herceptin til Friday (last one!)
Ive been back at work 4 months and its knackering!!! Im loving the feeling of “normality” Ive got, going back to work, but its hard! Just make sure you feel ready, both physically as well as mentally, before you go back.

hi there likeslilac,
the day/date for radiotherapy you’ve been given - isnt the 16th july a monday? have they got day and date mixed up, so you would be starting on a minday for 3 weeks.
xxx

Hi
I’m over 4 years past dx and over 3 years from finishing treatment. When going thro’ chemo I went into work whenever I could. Took a couple of days off etc but the fatigue really caught up with me. By the time I was having rads, I went into work in the morning and then rads in the pm. I wouldn’t recommend it. By lunchtime I’d hit a brickwall and just HAD to get home to bed. Whilst the rads were easy (in terms of symptoms etc ) it was exhausting, just going everyday.
If I had my time again, then I wouldn’t return to work until the treatment is finished.
Take care

I finished my rads on May 15th, having not had to have chemo.

The tiredness (oh! What tiredness!!) and skin tenderness peaks at about 2 weeks AFTER treatment finishes, and it’s a well documented fact that the emotional impact hits hardest at about that time too. So I’d advise not returning to work until at least 3 weeks after Rads finish. My GP wanted me to wait a month after rads, but because I work in a school, and I wanted to start back after half term, he agreed to a gradual phased return starting 12th June. I did 2 days the first week (Tues & Thurs to have a day off in between, which I soooo needed - after that first day teaching, I was unbelievably tired!!) and 3 days the next 2 weeks. (Mon, Wed, Fri). If this week goes OK (2nd 3-day week), and it’s OK so far, I’m doing 4 days for the next 2 weeks (Mon, Tues,Thurs,Fri) and then 5 days for the last week before we break up for the sumer hols.

It depends on the demands of your job, how you will need to manage your return, but most people do find rads far more exhausting than any other part of this hideous process. If you have a fairly gentle sort of job, returning ASAP may well help the psychological aspect, but be prepared to feel like you are not firing on all cylinders - especially as Tamoxifen can also make you feel tired. It certainly adds to my fatigue and mental ‘fog’!

Good Luck whatever you decide. Be kind to yourself and try to avoid feeling guilty!! :slight_smile: x

Hi likeslilac
I too have been off work since last november. I had 2 lots of surgery and then started chemo in february. That finished in may. i thought i may go to work whislt having it, but it was too much to even contemplate.
I started my rads in june and have now had 10 ( halfway). I went back to work on a phased return this week, mornings only. 3 days in and I’m beginning to flag. It was my decision, my dr would have written my note for as long as i wanted. she said to try and if it was too much to go back and she would sign me off for longer.
My advice would be get your certificate for 3 months and then if you want to return before thats up , go back to dr and they can change it (its now called a fit to work certificate i think rather than sick cert).
JCJ - i too work in a school and wanted to return before the end of term to ease myself back in. Still feel ive got chemo brain as not being the ‘full ticket’. I too have started tamoxifen which seems to have given me heatburn!!
I also thought Rads would start on a monday, but mine started on a thursday and so therefore will finish on a wednesday.
dont feel guilty, just do what your body tells you
Gill x

I thought I’d be fine after surgery and chemo and would be able to work while undergoing radiotherapy. How wrong I was. Chemo floored me and radiotherapy made me feel absolutely exhausted and it would have been completely impossible for me to go to work.

I was off work for 9 months in total and returned (phased return) 2 months after radiotherapy was complete. Looking back, I now regret returning to work so quickly. I don’t think it helped with my recovery and has probably contributed to my ongoing fatigue.

By the way, you say 3 months phased return is “generous” - actually reasonable adjustments consitute a right under the Equality Act in UK and your employer is legally obliged under this legislation. Don’t return until you are good and ready and make sure they treat you right. If necessary give your manager a copy of Macmillan’s excellent guide for employers macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Workandcancer/Supportformanagers/Employersguide/Employersguide.aspx

Hi Tommyticklemouse - I’ve checked my appointment card and it definitely says Tuesday 16 July. Thanks for noticing this; I’ll have to ring the hospital tomorrow and find out when they want me. I’m supposed to be seeing someone from Occy Health on the 16th as well so I’ll have to get this sorted.
I’m so grateful to everyone for sharing their experiences. The consultant had made me feel a bit of a malingerer, telling me lots of women work full time during chemo and radiotherapy, but we’re all different and need to do what’s best for us.
I saw my GP this morning - got more stressed going to see him than going to hospital appointments. I tentatively said I needed time to recover from radiotherapy and he straight away said he’d give me a note for 12 weeks and we’d take it from there. He said I could either go back to work sooner if I felt like it or get another note when the time comes. I must admit I’ve rather go back with some hair and eyebrows. I feel a lot more relaxed and in control now.

Well done GP, why we worry so much i dont know, but we do. Just shows we are conscientious but we will do ourselves and prob our colleagues a disservice if we go back too early. Every other illness I’ve had recently( over active thyroid 4 years ago, 2slipped disc 3yrs ago, gall bladder out last year) I know I’ve returned too early cos I felt guilty. I do wonder now if this and the accumulated stress of a job i have found very challenging, has contributed to my bc, I am determined to listen to my body this time. I am fortunate as I am in a good scheme through work and will not go to no pay until beginning of jan. hopefully will be back by then, but at least I know I’ve still got time. 2 more chemo and rads yet to do so won’t rush back anytime soon.
Relax a bit now, you have been given permission to be off ( that’s how I always see it!) and sounds like he’ll sign you off for longer if you need it.
Take care,
Gaynor xx

Hi
I had my mx with immediate reconstruction in April 2011, followed by 3 FEC and 3 docetaxel with the last being at the end of September. I then had 15 rads and finished just before Christmas. I then had a totally unrelated op at the end of January which necessitated removing my spleen. I am still on herceptin until the end of September this year as my January op meant that my herceptin had to be stopped for a couple of months. Doctaxel is a killer and takes quite some time to leave you.
I have been very lucky as I have been signed off from work for the whole time and able to work from home via a laptop, and also on full pay. I started my phased return 7 weeks ago and should now be back to my normal working pattern of 4 8 hour days, but after 13 months off I am finding it very hard. Not only is it physically tiring, but there are a lot of changes going on which means that my job is very different so the mental tiredness is even harder. I am hoping to take flexible retirement and cut down to 3 shorter days a week as I also have a commute to work.
Not having to go to work whilst receiving my treatment was a real help, but also not much help now that I am supposed to be back to normal working.
All I can say is listen to your body and don’t rush into trying to be the same person doing the same things before your treatment started. We are all different so be yourself and try not to rush things. Much better to take things slowly and get there in the end rather than pushing yourself too hard and wearing yourself out in the process.
Good luck and take care
Mazzalou xxx
By the way, my rads didn’t start on a Monday so actually spread over 4 weeks with a part week at the beginning and the end

Hi
I rang the hospital yesterday and it turns out they’ve got me booked in for Monday 16th July after all - was just a slip up on the appointment card! I know what Mazzalou means about lots of changes going on at work. I work in social care and we seem to be in a permanent process of being restructured. The only good thing is they’ve reorganised, restructured and relocated so much that my team seem to have gone full circle and are back to where they were a couple of years ago. Hopefully I’ll be able to adapt when I do eventually go back.
xx