should I finish work?

I am currently off sick after finding progression of lung mets and new bone met before Christmas and am considering applying for early retirement on medical grounds. Apart from the financial implications, which scare me, thinking about retirement at the age of 38 seems so final, and I just wanted to see how those of you that have made the decision have found it. I probably could carry on working for a bit, but find I cope much better with the fatigue, especially if I am not sleeping, and have more energy for my family, now I am off. Just the thought of all the stuffI have left at work, and having just ben through loads of copy emails from my boss makes me stressed, but I can’t seem to make the decision. Any thoughts or advice would be appreciated.
Nicky

Hi Nicky, I am a bit older than you - 48 - but I made the decision to take early retirement because I just felt I couldn’t give my all to my job and I wanted to spend more time with my family (or at least at home where I am more accessible).

It was a big wrench - I loved my job - I was a teacher. And I know that had I kept working I would have been able to distract myself from constantly thinking about cancer. But I know that fatigue would have been a big issue. Even though I am not on any aggressive regime at the moment, I still value the opportunity for a lie down in the afternoon, when I need it.

The thing that annoys me about being retired is that in order to qualify for my pension I had to be permanently incapable of working - which means that I am unable to take a paid job in the future, in whatever capacity. So if I fancied going out to work in the local nursery for a few hours a week I wouldn’t be able to, if it was paid. I have been offered supply cover jobs by my daughter’s school and I have said that I can only do them unpaid - which makes it difficult for the school because paid supply teachers would see me as undermining them. So you might like to check the terms and conditions of your pension policy to see whether you would be able to do any work at all.

It helps to have a plan about what you might do if you do take early retirement. I find it helps to keep myself busy - singing with a gospel choir, visiting the hospice, going swimming with a friend and doing some unpaid coaching work. That way I feel that there is more to me than just being ill all the time!

Hope this helps

Deirdre

Hi Nicky, I’m 51 and am thinking along the same lines as Deidre. I gave up work 2 years ago. I’m not entitled to any sort of ill health retirement but decided to do it anyway. I’d been told my secondary lump(liver) was getting worse so I decided to leave and enjoy the rest of my life and spend more time with my husband(the latter being a waste of time because the b****** left for another woman last summer, but that’s another story). I’ve never regretted it and I do voluntary work which helps me focus outside my problems and is less stressful than paid work.

I went back to work (in Wilkinsons) as a Christmas temp and although it was good to back with “the girls” it made me realise how important it was to be able to take things easier. I was very tired by the time I left and I’m glad to be able to have lie-ins and afternoon naps again and still have time to do interesting things.

I agree, psychologically it seems wrong to think of retirement at such a young age but there again the normal rule book went out of the window the day of the secondary diagnosis, I suppose.

Good luck, whatever decision you make.

Jackie xxx

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Nicky

I am only slightly older than you at 40 and at the mo am looking into all my options. so find this thread really interesting.

I was originally dx in July 07 and dx with lung mets Dec 08 so its all fresh and new. I am currently off sick and thought I would go back to work if well enough in between company. BUT, as my friend says, I have given 20 years of my life to the NHS, do I really want to give them whats left of my life??? I know I could live for many years, but this has been an aggressive disease from the beginning for me.

At present, I am waiting for HR to get back to me to let me know IF I can retire on ill health grounds or not. Also there comes the question about whether I would ever be able to work again if I did retire on ill health grounds - I suspect not. I am certainly going to not decide anything until after I get re scanned 1/2 way through my chemo - which will be late March, and see if the cancer is responding well to the chemo or not.

It is a really difficult decision, and one we cannot make lightly. Altho I dont have an OH (thankfully after reading others stories), I do have a 15 year old daughter. I have lots of plans with her and my close friends for the next 6 months and think if I did stop work I could easily keep myself busy. It does seem such a huge step tho - as you say - it seems so young!

Anyway, hugs to all of you and it will be interesting to read others experiences etc

Love
S
xxx

Hi…I went back to work (in further education) at first but left after a year and have never ever regretted my decision…x

I left my job whilst undertaking chemo ( I am 37). It wasnt an easy decision to make but it was the right one. I tried going back for just an hour a day but even that was a struggle. I have secondaries in my bones and so for me -every day is different. Some days I am fine, can walk about and get on with stuff. Others I just have enough energy to get my son to school and back and then lie on the sofa all day. I was fortunate to get DLA which has helped me financially and removed the need to job hunt. I am looking into volunteer work and also have lots of hobbies which also help

Jools

Just a bit on the total incapacity/permanent incapacity stuff.

I have two pension funds - a teacher’s pension and a local government pension.

With the local government pension I just had to prove that I was permanently incapable of ever going back to my old job. But I am allowed to work somewhere else if I found a job that was less demanding.

With the teacher’s one, I had to prove that I was incapable of any employment, and now that I have received the pension I am not allowed to do any paid work, anywhere.

If you are considering early retirement you need to look at the terms of your individual pension scheme(s) because they do vary from employer to employer.

Deirdre

Hi Nicky
Like you, I was diagnosed Sept 07 straight off with metastatic disease. Initially things were very bleak but luckily I have responded well to tamoxifen and zoladex and have been back working full-time (ish) since July. Initially, I could have retired no problem but I was wary of making a rash decision and getting back to work was very important for me psychologically. Now, having got back to ‘normality’, I find myself thinking about retirement options again and remembered the other day how I had considered quitting or changing my job long before diagnosis because I felt there was more to life than work! But at the mo, I do enjoy my work (very low stress levels now) and I have plenty of energy so I’ll stick at it a bit longer.
As a single 45 year old with no dependents, I appreciate that my position is different to many of yours but if you believe that you would have a better quality of life after retirement, then maybe you should let that guide your decision. Having energy to spend time with your family is so mportant and if, after retirement, you find yourself spending too much time time thinking about things, then there is always something we can do. Last year, I convinced myself that I should learn to play guitar, golf and paint, do voluntary work and visit friends all over the place! Have I done any of them properly? No! Sometimes I wonder whether going back to work full-time has cheated me of my new hobbies and holidays!
Joking aside, this is a difficult and personal decision for you as it is for all of us, because our illness makes it seem so final. But I’m sure the feeling of finality passes, even if it is uncomfortable for a while. If you do retire, then you enjoy it and don’t regret it. If you do find yourself mourning your old job, just pop in to see your colleagues once in a while and they’ll probably remind you of the stress you left behind!
Good luck with your decision-making Nicky and take care
Anne xx

Hi Nicky

I’m sorry you are facing this decision. I want to scream for you from the rooftops about the unfairness that is breast cancer. I took early retirement at 56 which is very different from being 38 as you are…I felt sad the day I went for my final medical but knew it was the right thing for me to do and have not regretted it (though being older than you my pension is probbaly bigger than yours and my outgoings are relatively small. no mortgage for example.)

Whatever you do take lots of advice…either from HR or from your union (unions can be great but also local officials can be hopeless as I found). In some public sector schemes it is possible, when you are terminally ill, to capitalisae the pension part of your pension and take all the money as a lump sum. Anothe option could be (with agreeement from employer) to go off sick indefinitley and then when you die your partner/husband would get a death in service benefit which could be more than the lump sum you will get now.

Sadly the rules in public sector schemes have been tightened up recently…I got my pension in 2005 and then it was possible to take the pension and still continue working though not in a teaching capcity (I was in Teachers Pension Fund.) So I have done paid part time work in a non teaching role since I retired. As Deirdre says, this has now been changed and people generally who get teachers’ sickness pension aren’t allowed to work at all…so check out with your scheme.

Work was a very important part of my identity, but I’ve never missed it. I don’t these days cope well with stress and I would have been miserable carrying on.

best wishes whatever you decide…don’t rush.

Jane

Nicky,
Would just like to re-emphasise what both Anne and Jane have said (probably others too but they are fresh in my mind).
You were probably just very ready for the rest. To finish permanently needs a lot of discussion and thought. How generous is your sick pay sheme and how much sick leave have you taken? Taking extended sick leave would give you a bit more thinking space. Also, have you claimed DLA? You can do this while working or not?

I was diagnosed 8 nearly 9 years ago and with secondaries in April. Even after the first round of treatment ( neo-adjuvant ac, double mast, rads, cmf then tamox), I found it incredibly difficult to work. My daughter was nearly 4 then and it was very hard.Dealing with fatigue, treatment and the everday stresses of being a mother were soul destroying. I also suffered from(still do) cognitive problems linked to treatment. I was a Primary School Teacher.I had little difficulty with the intellectual side of things but could not remember where I had put my plans, childrens books,names etc .I struggled to recall words and to spell. It was incredibly stressful but I could not afford to give up .
Anyway, I wish wholeheartedly I had put in for ill heath retirement from teaching then ,but I struggled on. As stated by others, it is much more complex now (although I have recently been paid my pension as a lump sum under the commuted rules based on life expectancy). It is still not nearly enough though. Eventually I could not go on and took a part time job intending to return.
So for the last few years I have worked for a small charity.It has been a godsend.During very low periods, helping others has really helped me to feel more useful.I also feel that I need to financially.Under the terms of the DDA your employer has a duty to make reasonable adjustments for you e.g working fewer hours and the like. What I am trying to say is to check the ins and outs of your pension ie can you do any other work aswell?Please allow for my cognitive deficit (Oncs term) in this rambling. I hope you get the gist of what I am trying to say!! julie xxx

My view is to finish work, unless you absolutely can’t survive without the money. I took early retirement from my full time job as a secretary 2 years ago. It was stressful and emotional at the time and I kept wondering if I had made the right decision. I am lucky? financially as I was granted early retirement due to ill health and got my work pension early. I am now claiming incapacity benefit and disability living allowance (both on grounds of having secondary ie terminal cancer).
I also have a husband who is working full time on a decent wage and my two children are no longer financially dependent. I missed work at first, but I have now adapted to my new situation. I still see people from work socially. I am viewing this time as my retirement at 60/65 arriving early and I am doing as much as I can. I find loads of things to fill up the day, I have got a dog (which I had planned to do at normal retirement age, and am having as many holidays and outings as my finances and state of health will allow! Obviously, it is a forced retirement, which I would have preferred not to have had to take. But when I get up and don’t have to go to work, I am very glad. I still have a routine to the day. I get up at 8.00 am, I take the dog for a walk nearly every day and try to do something with every day,sometimes I do a lot, sometimes I just read or listen to music, depending how I feel. I certainly do not regret my decision to finish work.

My medical situation is that I was diagnosed with secondary in lungs, liver and bone in January 2006. I had a course of Taxotere, then a short chemobreak and now I am on Xeloda (reduced dose 11 days at 3650mg x2 daily 17 days rest, I take Bondronat daily and pyridoxine and Alpha Lipoic acid, I cream my feet at least twice a day, as I had bad hand foot syndrome.

I am sorry to have rambled on a bit. You have to make your own decision of course as per your own circumstances, but it is interesting to know what others are doing isn’t it. That is mainly why I come on the site.

PS: I am 54 years old.

Best wishes to all
JOY

Hi all,

LOVING this thread !!

I have been so interested to read everyone’s experiences and now don’t feel as guilty about applying for retirement early or feel like a failure for not having coped when I did try to go back to work (see my post above). My oncologist has received the latest request for info from HR - her nurse and secretary think they are being unreasonable - and my physio is appalled I am having to go through the stress of it all. At least I have the backing of the medical professionals. God knows how long this is going to take - good job bone mets aren’t that bad !

In the meantime, I try and do something every day like you Joy - it’s a form of structure to the day I think I need. I get incapacity benefit but that’s all (pay from work ended last June) - better than nothing!!

Keep the interesting posts/experiences coming.

Liz

Hi Nicky

I personally adore my job and am gutted that I wont be able to do all the things I had planned in the longer term, for me work and everything about my life was exactly how I wanted it to be, then cancer tried to steal it from me… I won’t let it yet. However, I do understand the logic in giving up work, if that is right for a person. I am 41, I think I would go stark staring bonkers if I didn’t work, being ‘sick’ from treatments drives me mad, so no work at all, hell on earth for me.

We are all so totally unique though, and I belive we each have to do what we feel is right for us at that particular time, so if you feel it’s the best thing for you, then why not. Now each day has to be about what makes you happy isn’t it.

Best of luck with your decision.

Nikki

Hi Everyone and thanks for this thread… I was diagnosed september 2008 with secs in lymph , bones and liver - original breast cancer 2000. I am 53 and work for a small charity- I am still working but with slightly different duties ( which can’t go on much longer) I worry about having to go off sick - 3 months and then ??? My prognosis is poor - 18 months - onc said-and if I cash in my pension or take it now i will ( realistically ) only get a year or two yet as a lump sum when I die it is worth 35k - which could really help my daughter out so I want to keep it for hewr, if this makes sense …but fearful about finances if I don’t “retire”- anyne with any thoughts on this pedicament? all our situations are so different but thank you all for your posts…jayne

Thank you all for your stories and advice. It helps to know what other people have experienced. At the moment I have decided to take another month of sick leave, and am waiting to hear about a meeting with my manager, who is being very supportive, and HR. I have also organised an appointment with a Macmillan welfare rights person next week, so will let you know what advice she gives. Although work has always been very important to me, I am feeling so much better not working- we got a puppy 5 weeks a go and walking him every day is helping my fatigue, aswell as the nap in the aftrnoon before I pick my son up from school.
The financial side is worryng me-my pension would not be very big, but I willask about the posibility of getting a lump sum. Me and my husband are having fantasies about a family train trip accross Europe!.

Thanks once again for all your comments , I will keep you posted abaout how how I get on.
Nicky

Hi again,

Latest update from me - am off to see a doctor at GP surgery on Tues as she’s received a copy of THE letter to reply to and has never seen me or heard of me and thought it would be better if she could discuss my case history face-to-face rather than just send something general back. I think that’s reasonable and hope it’s a hormonal day ! Then it’s down to whether the case reviewer at HR thinks there’s enough info to put in front of the trustees but they only meet once a month so it’s going to run and run.

Nicky - go for the European train trip, fab idea !

Keep posting and I will update on Tues.

Liz x

Hi Nicky,

Good Luck with whatever decision you come to. If it were me, I would stop work and enjoy your son and that puppy. I know financial issues raise their ugly heads, but I always feel we are not going to starve to death. I haven’t worked since my children were born (2000 - though strangely I have kind of been offered a part-time job this week) and though we’ve had less money, we’ve just adjusted our lives to suit.

Jenny
x

It really is a difficult decision - and I’m sure it depends on things such as your age and whether you have young children - when you would want to spend as much time as possible with them. I was desperate to get back to work after chemo and I am still working 15 months later (on arimidex). Now though I wonder about whether and how much I should work and whether I should be spending time on other things. I think my determination to get back to work was really a denial of the fact I have secondary cancer. Work meant normal. Now I’ve gone down to 4 days a week though I don’t as yet know if I will be able to take this as sick leave or will have to take it unpaid and have moved to a less stressful ( boring?) job. I’m reluctant to give up work totally at this point. I’m sure I’ll have to eventually but if I have to go onto long term sick pay the company has a scheme which pays 3/4 salary until retirement age (3 years away) and I’m miserly enough not to want to miss out on this. The trouble is how do you decide when you are ill enough to go off sick full time? My Dr strongly advised me not to work during chemo but after that what happens. Do you just ask your GP to sign you off and has anyone got experience of how helpful they are?

BTW - on the subject of train trips, a friend of mine did trans USA - New York -Chicago - San Francisco and loved it. That’s another thing on my ‘must do’ list!

Hi Manon,

I felt the same as you about the normality thing going back to work but it didn’t work out (see my post above). Your work long term sick policy sounds brill and I wouldn’t hesitate if anything like that was offered to me - the best I can hope for even if they do feel generous is about a third of my current salary. I decided to go for it now whilst I am technically on a full time salary in a more responsible role even though my sick pay ran out months and months ago and I did feel a bit guilty about that but then thought I’ve got to do what’s best for me. If you have to take the one day less as unpaid, that will be 80% of orig salary and if I’ve read things correctly, your long term sick will give 75% of salary to retirement which is not a huge drop BUT it all depends on your financial etc circumstances and only you can decide that bit !

As far as the doctors are concerned, I think it’s hit and miss from what I’ve read on here. My consultants have been brill and made me see how ill I’ve been and I’ve just gone to GP - different one evry time round here - and told them the consultants have said I’m not fit enough yet and sick note has been no problem. I’ve been off sick for 18 months and my next sick note will take it to nearly 2 yrs…Good luck whatever you end up doing,

Liz