Going back to work.

Hello everyone.
Just about to have second lot of chemo next Wednesday and was wondering when to go back to work. I felt rough for the first four days then picked up again and now feel ok, ready to face round two. However being sat at home is slowly driving me round the twist, I feel i need to get back into the swing of things just to keep my sanity and have a bit of normality back in my life. How many of you have continued to work or just went onto long term sick? It’s not just the well being side of it all neither that worries me but also financially. I get 12 weeks full sick pay then it drops down to SSP. I know that I can get it topped up with incapacity benefit that’s not the problem. It’s just that I would rather be out at work providing I’m feeling ok. One friend is telling me that it would do me good to get back to work, another is telling me that I need to take care of myself and take off all the time I need. I just thought I’d see how everyone else is coping throughout their chemo. I know everyone is different with regards to side effects but would appreciate any feed back from you all
Big hugs
Kerry xx

Hi Kerry
I wasn’t allowed to go to work during chemo as I work with children and was at risk of catching infection. Apparently if you work around people ie: hospital, school etc there is a greater risk. I got neutropenia once through infection which was extremely unpleasant. I am glad you’re not finding the chemo too bad and hope it continues that way. I would have a word with your onc and see what they say.
Hugs
Beth

Hi Kerry

I know where you’re coming from. I was dx in May and began chemo in July. I really needed to get back to work for my sanity!

It depends on your job. My boss has been great and is willing for me to go back a few half days per week and I decided to go back from the end of August after my 3rd chemo. BUT I didn’t feel well enough. There was no way I could commit myself to a certain number of hours per week. My sick note ran out today and I have an appointment with my boss tomorrow, but in my heart I know that I will have to wait another couple of weeks.

That doesn’t mean to say that I can’t make myself useful. I’ll still work a couple of mornings a week and do some work from home (I need that to keep my sanity), but just recognise that chemo does ‘take it out of you’.

Like you. I need the normality of work, but it’s no good making yourself ill.

Mal

I think the main thing is to keep the brain active… I am back at work and went back properly a few weeks ago but I do work from home so no risk or exposure to snotty kids etc but I did find I expected to do as much as usual but that knocked me into a miserable mood from exhausition. On th flip side though the sense of achievement when I actually managed to finish some stuff made me very happy and may be responsible for my Neutrophil level being nearly twice what it was when I started at the start of FEC 5 so 2/3rds in and I’m actually getting stronger again.

So I’d say do actively try to achieve something that will make you feel better as it has made me feel so much better than dedicating my life to cancer treatment… yes I’m still doing the treatment but it doesn’t have to be ALL I do does it, but yeah don’t drive yourself to despair from being unrealistic about what you can do right now.

HTH

Angie

Hello,

I am new to commenting on the site - but have been reading for ages now!
I was diagnosed in May of this year, had surgery in June and started chemotherapy on 13th August, my next dose is due 3rd September. I too would like to work during chemotherapy, my oncologist was very understanding and gave me the ok - I work with children, she said as long as I don’t go cuddling sick children I will be ok. I am also able to work at home if I wish so I am lucky. After my first chemotherapy I was tired on the day, was hyper for the next two days, then felt tired and had ‘flu’ like, ‘jet lag’ symptoms for the next three days. I did have IV anti sick and steroids before I had the chemotherapy and also had anti sick tablets for three days after treatment. The downside was that all these drugs played havoc with my bowels! I did feel quite rotten 4 days after first chemo and really thought I would not be returning to work. However a couple of days later was fine! I am drinking well and trying to keep to all the advice given by chemo nurse etc. I really did find the useful hints a great help - thank you. I sent for some headgear from the recommended site, I ordered two sleep caps and another hat. I ordered them Friday and they were with me on Tuesday. - thanks for advice.
I have two wigs and headgear at the ready, but hair is still with me - any advice on when this might be leaving me?
In answer to earlier query I am also hormone negative, I worried about this initially however have been reassured by my breast cancer nurse that it is not fed by hormones, therefore there is no need for me to have hormone treatment.
One further query - I was due for lymph clearance, the surgeon only found one lymph node - she assured me she had a good rummage around and found no more - it was clear. Has anyone else had one lymph?

I

Hi everyone,
Sunbeam - I think this is an individual decision and a lot depends on the type of job and of course whether financially you have a choice at all. I am a teacher and it looks like I will have about 10 months off school from how it is going so far. Mine is long because I am on a trial and got a 28 week run of treatment, so I get 8 doses whereas the standard treatment can be 6 and therefore quicker. On epi I would not have been able to work at all for the first week, the second week my immune system would have been too low to be with 1200 children each day and being there every third week was impossible to give the kids stability or for the school to organise cover. They encouraged me to go off completely until I could manage full time. I get full pay for 6 months and half pay for 6 so more fortunate than some. If you can avoid children and ill people you should be fine and that would mean your sick pay stretches further for your bad weeks. Why not try 3 days on your best week if they let you and build up? It is only since I switched off mega doses of epi that I could even comprehend thinking of working, it is much clearer how people manage now, so I have changed my opinion a little. Lots of luck in whatever you decide Kerry.
Hi Alison, don’t talk to me about bowels, I have never had such an avid interest in them. People must think I am a right weirdo! Mine are either full of fast drying cement or trying to beat the world record for going from the mouth to the other end in a new world record!!! You have my utmost sympathy.It depends on the drugs you are having regarding the hair but if you have an E you could be heading for a loss in the next week. Signs are increased loss for a few days or horrid prickling of the scalp. Good luck.I am assuming you are perhaps HER2 positive or maybe triple negative. Ask the BCN what type you are and then read the threads of the experts in the same boat, starting your own thread asking, once you know which will bring a lot of info and support. Snap they also only found one lymph node in mine and I was concerned but nobody else is as it was a sentinel node that they tracked and the one they wanted to test.
Love to you all. Take care
Lily x

Thanks for all your good advice. I shall speak to my oncologist on Wednesday to see what he says. I’ve been into work to keep them informed and they have been really understanding and said for me to take as long off as I need so no pressure from them. At the end of the day I have to realize that I’m not superwoman and just listen to my body.

Hi Alison, with regards to losing your hair I had my 1st lot of chemo on the 13th of August and my hair started to fall out on Tuesday. Washed my hair this morning and when I looked in the bath there was a carpet of dark hair!! I’m not too fussed about losing the hair as I’ve always worn it really short anyway. I’ve told the OH that he can get the clippers out when he comes home from work and take it shorter. Got my wig and also plenty of headwear.

Big hugs to everyone and thank you for your support. I don’t know what I’d do without the website. The OH has to wrestle me off the PC whereas before I never used to bother.Keep smiling ladies
Kerry xx

Hi Sunbeam,

I think quite a lot of us work to some extent during chemo - it’s just that those who work have less time to come online. I worked all through, taking off the days I felt bad and coming in to work when I felt OK. I was only entitled to one month’s sick pay, but as I made the effort and kept on turning up, they kept on paying me, even tho I had quite a bit more than one month after surgery & 8 cycles of chemo.

Hi Everyone,

Thanks for your comments - very helpful and useful.
Sunbeam - I went to work yesterday and again today - I am a school bursar, have been there for 20 years, have never been off sick before so this is all unusual for me. I have a very understanding head and governing body and will be able to work when and if I can. I can also work at home (so in p’js sometimes!). I feel so good today as have other things to think about rather than ‘C’ and side effects of chemotherapy. I also realise that I must not do too much and listen to my body and will certainly not go in or come home when feeling tired - and will certainly keep away from anyone with a cold etc. I think you too should listen to your body, just do as much or as little as you feel possible. I am finding it very rewarding, but next week may be at home feeling awful! I am lucky I am entitled to 6 months full pay and 6 months half pay. p.s. I must admit I don’t drink as much at work as I do at home - so need to watch that!

Lily - you did make me feel normal (bowels!), mine are just the same! I am on Epi for 4 doses, then not sure what I will have, there is talk about a trial or maybe CMF. I meet with the Oncologist on Monday so might be enlightened then. I am also not sure what type I am - I will ask next week. I was initially worried about one lymph node, it was clear so thought that was ok. It was the Oncologist who put a fear on us - saying they didn’t think they got the sentinel node and that when I get to radiotherapy she is going to ensure the area is blasted as well as the breast site. However she did not have my notes (the hospital administration had mislaid them), Talking to the BCN last week she said they don’t know if it was the sentinel node as they didn’t do the blue dye test. However I am assuming it was, as far as I am concerned it was clear and that’s good for me.

Kerry and Lily thanks for advice about hair loss - I am waiting for it to fall out, in some ways I just wish it would just get on and happen.
Perhaps I will keep a hat in my handbag in case it blows away!

Thank you all very much for your support - Best wishes to you All

Alison x

Hi Alison
The hair has finally had a trim. Got the OH to get the clippers on it. It doesn’t look too bad but not been out the house yet. Feel quite liberated. At least I won’t use much shampoo!!
Kerry xx

Hi Alison

Snap! I too am a school bursar in a large inner city boys’ school (Manchester). Like you I’ve been in school this morning and again tomorrow. As I said in my previous post I was thinking of waiting until my 4th Epi was out-of-the-way next week before going back but having met with the Head this morning he’s more than happy for me to put in an appearance as and when I’m able. Also like you I’ve been there for nearly 30 years and this has been my first sick note.

The tiredness is certainly cumulative and I’m only just emerging from the chemo fog after a week. It’s great going into work and having something else to think about other than BC, but after 3 or 4 hours I hit a brick wall and have to go home to bed.

So yes going into work has certainly helped me over the past couple of weeks but just remember everyone’s different. It does get harder. I thought I’d been given a placebo after my first chemo.

Take care.

Mal

Hi,
I had 4 x epi and did find with me that it accumulated, especially the last one and had to take a week off treatment. Others just sail through it, so strange how we differ. I have now moved on to CMF as I am on the TACT2 trial and these are double doses so you have to go 2 weeks in a row over a 28 day cycle, so this half is much slower. I am so pleased that the CMF is much kinder to me, despite being very anxious about going back for more on day 8. It would have taken a very strong person to get me there on day 8 while on epi, I can say.
Alison, I had the blue dye and I am still partly blue from the 1st of April, very amusing. It does track the correct node well but the surgeon has to passs tests before allowed to do them. Good luck with the bowels and react very quickly to the changes or they can accelerate out of control quickly. I was poleaxed by eating some cucumber from a takeaway and learnt the hard way. Told never to chance salad out unless I knew the place very well and to stick to cooked food as less handling by unwashed people!! Yuk!
Sunbeam, you were brave about your hair, well done. I get told off for hogging the computer too at times. Love the site, so helpful.Your employers sound really supportive, so helpful when they are nice.
Good luck everyone
Lily x

Hello All,

I thought I was getting along so well working last week, didn’t feel quite right on Friday took my temperature a couple of times whilst at school. When I got home thought I would have a nice bath to make myself feel better - and wow - had a huge rash on both boobs! It was 5.30 p.m. on Friday night so too late to phone hospital ward, phoned duty doctor who asked to see me. She gave me antibiotic and was happy for me to go home as long as I kept an eye on rash and temperature… Well by 8 p.m. temp had risen to 38 (bother!). Consequently spent the weekend isolated in hospital on IV paracetamol followed by IV antibiotic. White blood cells and neuts had dropped so low couldn’t cope with infection (from original surgery). The staff were wonderful and managed to get neuts up to 1.9 to enable me to come home Monday ready for next chemo tomorrow (Wednesday) - oh and joy of joys, hair started falling out whilst in hospital. The first call when home was to hairdresser to plead that she could cut hair asap. Have a very short hairstyle now, when the wind blew today I had to hold onto it before the rest blew away!! Wigs and headcovers coming out tomorrow.
One advantage is that the antibiotics seem to have sorted my bowel problems.
I went to school today and was told I look 10 years younger with short hair - think they might be being kind.
Have ginger ale, ginger biscuits, travel bands, senna, prunes, pineapple etc etc… at the ready for 2nd Epi tomorrow.

Best wishes to all,

Alison