anyone been told to give up work

Hi everyone start Xeloda next week after secondary dx lung mets asked the onc yesterday if they can stabilise it can I carry on working and when I told him what I did he said no that I would have to give up my job .I only work 10 hours a week but its in a supermarket on the checkout and also on services counters job involves heavy work just wondering if anyone was told to give up job Im freaking out a bit because then my key worker is asking me if I want to fill out benefit forms etc…

Hi Mandy,

I don’t really have the answers to your questions but wanted to post a) to bump your post to the top of the latest posts section because it doesnt appear on this daft system until someone answers! You’ll probably have half a dozen answers before I finish LOL. and b) has anyone explained about DLA to you (disability living allowance), A lot of the girls with secondaries claim with a DS1500 form which your onc/gp/macmillan can fill in for you. Many of us get the full allowance which is £134.40 per week from next week and it is not taxed. Having said that you are probably younger than I am and I know things are about to change with the whole structure of DLA for those of working age and perhaps one of the others can tell you how it is going to work. As I am over 65 I think this age group are being left in peace for now!


I cant get the hang of this posting lark and havent even started the chemo yet

XEloda / Capecitebine is a comparitively easy chemo for most people - there’s a thread which you might find useful. I’m on cycle 10 and extremely lucky to have no side effects. I’m a boney lady so obviously different symptoms to you and was made r3edundant and retired gracelessly before my sec dx so difficult for me to comment but I’ll still do so!

If you only do 10 hours - I’m assuming this is several short shifts not 1 big one - I think I’d be tempted to see how I cope. In a lot of ways working is a good distraction from the illness as you’re with non cancer people and occupied, which means your mind doesn’t go where it shouldn’t if it has a tendency to do so which I suspect yours does at this early stage - most people do. Maybe speak to your employer and ask for the lighter duties - I used to checkout when I was at school and it wasn’t too bad lifting wise - if I was faced with something heavy I fluttered my eyelashes at the customer! If you can’t cope, so be it, but I’d try and see - I can’t see you doing any harm to yourself.
Dawn’s right re DLA - but I think if your onc is looking to stabilise you he obviously thinks you have more than the 6 months required for the DS1500 so you may have to go the ordinary route - they are cracking down on DS1500 applications - but definitely apply - and it’s the worst days you describe not the normal or better days!


If you are thinking of applying for DLA get your claim in now. It changes to PIP on 11th April, I believe, and will be more difficult to qualify. You can download the form from and hand it in to your nearest office, or there is an option to do it online. If you can get some help from Macmillan or CAB, I would do so. Realise it is getting late, but they would be best able to advise. For example, you may qualify for mobility allowance because you feel unable to go out on your own because of depression. It’s not simply a matter of whether you can walk or not.

I would also encourage you to stay in work if at all possible. (If you feel this is what you would like to do.) It provides you with some money and prevents you from becoming socially isolated, and I think this is not always recognised by the medical profession. If it does not work out, you still have the option to leave. But you won’t know unless you try.

My onc keeps asking if I am still working and worries that it is money worries that keeps me at work (and asking if I would be entitled to any means-tested benefits). I currently am working, to keep my mind busy and feel useful. I am wondering about giving up, but this is because I get tired on Cap and feel it would be better to have day-time naps on days when my daughter is at school and husband at work and then have more energy for weekends with the family. But if you can manage your work, enjoy it and/or your boss can ensure that you don’t have to do anything you physically find tough.
If your onc is talking about DLA (or the newer PIP), do take him up on the offer. Macmillan have a finance team attached to my local county council and one call from my BCN (and a DS1500) got them to fill in my form for me. They just called me to confirm my NI number and bank account. Like others, I got the higher level carers allowance and higher level mobility, so the £134 a week. Some of this currently pays for the cleaner (as I can’t do heavy tasks like hoover or carry baskets of wet washing) and the fuel I waste driving to school to collect my daughter, drive to the childminders etc all of which I would haven’t have thought twice about walking before my bone mets and spinal surgery. Getting higher level mobility also entitles you to a blue badge if you find walking distances tough.

Hi all, as far as I know you are protected by the Disability Discrimination Act so if some of your job involves heavy lifting it is up to your employer to offer you an alternative task, after some consultation with you. I chose to finish work but I did go back to work for a while and my employers were great and I was able to change hours, drop some parts of my job etc. I’ve had secondaries since 2003 so this was how it was then so worth looking up the Disability Discrimination Act to see if anything has changed since then.
The Disability Living Allowance was not means tested (I don’t know the PIP rules) so the amount you are, were awarded was the same whether or not you worked. Good Luck Capecitabine/Xeloda ladies, the tablets worked well for me for just over 4 years.

thanks everybody bcn is sending forms out to me however after speaking to a friend at work she reckons everyone handing in notice and leaving as things are getting dire re managrment and work load I was doing the job of two people before I went off sick so maybe I will reconsider ,I do have another part time office job that I do from home so maybe just keep that one

Hi Mandy
just to add my two penny worth! After my bone mets Dx in 2008 I was lucky enough to continue with my very part time office work, even on IV chemo. Unfortunately that job ended in 2010 when the company was bought so I took some time out which I appreciated just having ‘ME’ time. However last year in October I started a new, totally different part time job, not manual but involved sitting in a tribunal room as an assistant, sometimes for over four hours at a time. I was then dx with further spread in Feb 2013 and put onto Capecitabine. Although it should be an easier regime than IV chemo I have found it difficult to adjust and do have feelings of nausea which, in the job I’d just started I couldn’t have a break from, to say get a cup of tea, or a biscuit to help the symptoms. I therefore had to stop work on those grounds, a normal office job may have been OK but one where you can’t just leave, have a break or go home sick was not. Since then I’ve had my DLA reinstated after a bit of a battle but also am claiming ESA, Employment Support Allowance, which all people on chemo can have and is either based on NHI contributions ( as mine is) or means tested. This is £71 per week and I think goes up to £101 per week after the initial period. Macmillan can help with this as well although I just phoned the DWP number to get mine. You need a medical certificate from your GP to say you are unable to work as you are having chemotherapy so this may not apply to you if you have no SEs from Cape, but did apply to me as I do.
hope this helps and good luck with the Cape, there are many of us on this drug and I hope it is working its wonders for all of us.
nicky xx

Hi everyone, such a difficult time regarding work and what to do. I have just had my meeting with OH yesterday…my onc seems confident that I should be able to be back to work full time by September. It is work that I think are more of an issue…the OH has suggested I need a phased return, which I am planning to start towards the end of May. I need to get a sense of normality back into my life…I work with children and I love my job. I shall see how I get on and then make some serious decisions. I have no pain and am stable at mo…still tired after chemo…so want to give work a go.I think its up to the individual as to how they feel about work. I have not looked into the DLA although do have ESA allowance. Good luck with all your decisions.
Mel xxx

thanks Nicky Im worried about the fact that if Im on my own cant walk off my co workers are a good bunch its the management who have no idea live in another world lol.I lost my job when I was dx first time as it was quite manual and only been at this job for 18 months ,I wont miss the job just my co workers as we do have a laugh and the the discount if I do leave lol
Mandy xx

Hi Mandy, it does seem to be the management who are the issue. However they are duty bound by the disability act to make reasonable adjustments. If you want to work and can I would get in touch wuth MacMillan for advice. I guess its not easy for a work place to function easily if we are not there (in my case) I am a deputy head and am aware me not bring there has put extra stress on everyone else howevet like you we didnt ask for this illness…do the right thing for yoy.
Nel xxxx

Hi Mandy,

I was diagnosed with secondarys to the spine and liver in January 2012 I went back to work in February that year mainly to keep my mind off things and have a little normality in my and my families lives. I work in Theatres at the hospital I am being treated and this job can be really hard work and alot of heavy lifting but theres always ways round it. It helps not to be thinking constantly about cancer. My only real problem is the NHS policies I am on a disciplinary for my sickness and have been put on a 12 month monitoring period. I will have worked in the NHS for 10 years in november in that time I have had 4 occasions of sickness 1 of which is when I lost my oldest son. So much for the caring profession.
Do what you feel is right I have to say it has helped me going back to work.

Jennie x

Hi Mandy
I was told I’d need to give up work when I started on chemo as my job involves close contact with the public and patients and there was too great a risk of infection when my immune system was compromised by the drugs. This may be the reason your onc has advised you not to work as you are obviously in contact with a lot of people at work.
I had 7 months off sick then started back on a phased return but after a nasty bout of flu and serious complications from that I wasn’t fit to return to my normal duties and hours and my contract was terminated. Since then I’ve started in a different role with less hours and I am quite happy with that as I have a better balance between work, home and treatment now. It’s just the bank balance suffering.
I was encouraged to apply for DLA under special rules and got a full award which gives me something to compensate for the loss of income. There is also ESA if you are unable to work or can only do limited work.
I wouldn’t just hand in your notice as you may be able to return to work at some stage. DLA can be claimed whether you are at work or not. Your diagnosis also means that you will be covered by the Equality Act and your employer has to make reasonable adjustments to your work if required due to your condition which is treated as a disability. It may help to have a discussion with your employer about what may be possible before you take the step of stopping work altogether.

Just to add my two penny worth - I was diagnosed with liver bone and lung mets Nov 2011 and given 6 weeks to live!! I am now on cycle 24 of cap and have worked throughtout - have had 5 days off since diagnosis. To be fair I only work 23 hours a week but one is an 11.5 hourd dat and two 6.5 hour days - I am a paedatric nurse . I do find it tiring but dobable. Help ths helps. xx