How are people coping with maintaining employment whilst having CLL?

[Fishface]

Hello, I was just wondering what experiences people are having with maintaining a job whilst having CLL? Have people found they have had to reduce their hours or even give up work due to their diagnosis or treatment needed? I am under 30 and have been diagnosed for almost a year now. I have been off work for the last year due going through major bowel surgery and I am due to return to work in the health care profession in March. Already I am realising how difficult it is going to be to hold down a job whilst having so many medical appointments and sick days. Just wondering how others cope and what changes you may have had to make?

[Oleboyredw-uk]

I've had the luxury of taking time off during my chemo (6xFCR) and just started back at work gradually ramping up to full time at end of March. So far so good (2days this week). As part of my job i meet people andtravel quite a bit. These i am concerned about but want to return to as near normal as possible.

I'll try to update this in a couple of weeks then once full time.

Rob

[Safta]

I am a teacher and I find I have much less patience and swing than I used to. But the alternative - early retirement - fills me with dread. What am I going to do? Brood all day?

[Quarry]

I agree with Safta re early retirement!

I have discussed with my employer (initially HR and my immediate boss only). They are supportive of time re medical appointments and will be if I need treatment. I then agonised if others needed to know and in the end have told some immediate colleagues on the principle that it is easier to do that than try to hide/explain medical appointments.

So work will be supportive if/when I need treatment. You obviously have endured more of that than me, so I wish you quick return to normal, abnd yes working, life!

I intend to keep going! Like Safta, I feel it keeps a normality to life....though there are lots of things I coud do if I stopped............but that is the usual money-no-object dream!

[jangreen]

Hi I am one of those not working (I am 57 and female) but my days don't drag, sometimes I wonder where all the time goes. So yes there is life after work but if you feel you want to keep working how about part time?

[pitbull]

Hi

I started a new job 4 days after being told, I was told by my doc on 14th Feb this year (happy Valentines!!!!) I had a medical for the job on the 15th, I told the occupational health service but haven't told HR or my boss yet as I need to do 3 month to qualify for sick pay and 6 month probation.

My theory is I have been told by my doc that I ha an abnormal blood test suggesting CLL, my referral to a hematologist is not until the 14th April so as far as I am concerned my diagnosis is not confirmed yet.

My health is fine and I feel good and as my referral was "non urgent" as stated on the blood test results and is so far away I am sure I am Class A and will be watch and wait (and will remain so for a good many years to come I hope) so on that basis I do not see the need to tell anyone until I am confirmed and my condition deteriorates sufficiently to warrant treatment.

Occupational health told me they will defer a fit to work decision and will see me again in March, this is a health authority service provided to my company which being a chemical manufacturer puts all its staff on health surveillance anyway. As I see it, this is between me and OH at the moment and if they try and say I am not fit for work, I will argue that the rest of the medical showed no signs for concern and they shouldn't discriminate against me over one blood test. I dont envisage it being a problem anyway.

I have discovered in the 2 weeks I have been there that a number of my colleagues have cancers of varying types and the company has supported them all, my only concern is me being so new.

Sorry if this reply is a bit long, just wanted to put my experience.

[WillieG in reply to pitbull]

I'm wondering about changing my job at the moment was curious what others went through when they did. At the moment I'm in full remission and finishing my 3rd FCR treatment trying to squeeze in a 4th (4 treatments are considered the bare minimum one should take if they wish to obtain long term remission statistically.)

Anyways, at the moment I'm thinking of moving to greener pastures. I have a Desktop Technician position but act as Senior Tech, AV Technician, Server Admin when needed, and Network Admin... I need to start getting paid for that experience instead of it going their buddies, cronies, and yes men... yes I work in the public sector.

I spoke with my nurse practitioner and she felt I should stay where I was at because I'll require continuous blood monitoring/work to check my WBC/RBC/etc. over the long haul. She's basically telling me I'll have to stay here until Im long and gone! I can't deal with that idea at all!

If I go somewhere that had the same health insurance, I could pay for the blood work out of pocket for 3 mos or so until I'm elegible for insurance and then let them take it the rest of the way. The whole idea of being stuck here in this dead end job performing other people job makes me want to commit seppuku!

[Barbarann]

I chose to work part time two years ago, before diagnosis, and wonder whether the tiredness was already getting to me then. I'm on watch and wait, am 60 now, and wonder whether to stop work sooner than my retirement age. I need to look at the occupational health angle. My consultant says tiredness goes with the territory, and although I have had no change in blood counts over the last year, I do seem to get more tired.

I feel I need to find work life balance, again. It would be great if money was no concern.

[Nicebaps]

I've been with the Company I work for for just over 15 years and made them fully aware when I was diagnosed back in 2009. Having had FCR Feb-Sep 12 and being off work for 7 months+ my Company have been nothing but understanding and supportive. I started back 1 Oct on a phased return and by the end of October I was back full time. For the first couple of months it was tiring but I managed. Now in March and I feel fine but do get tired if I've had a real busy day. I keep my line managers up-to-date when I see the Haematologist and everyone is happy. I've had a couple of chest infections since finishing FCR but managed to hang on in there.

I guess I'm one of the lucky ones that's managed to pull through these experiences without it effecting my employment too much. Hope this helps fishface

[Oleboyredw-uk]

I promised an update after a couple of weeks, but it slipped my mind, apologes.

So, here it is.

The ramp up during Feb/Mar adding a day every fortnight went well, apart from frustration on my part. I work for a small company and everybody is really busy. I drop in for a day, then a couple etc. frustration purely because i feel i should do more to help.

Now i'm on fill time and i feel happier. I've changed to a new role which is far more office based. Maybe one day out on road per week instead of four so i think that helps with reducing risk of infection (i realise it wont fix it but life is a compromse).

So, at current time, look forward to work at weekends a weekends when at work. Normal really. One of my trips out was two days in Germany training a new reseller, that went well sith no incidents.

I think i'm lucky the ways things have worked out, so far.

HR and my manager hover descretey checking I'm looking forward to it as i have so many things i want to do and two out of seven days isnt enough, but at present i'm enjoying work and so far inciden free.

Be well all, Rob

[Oleboyredw-uk in reply to Oleboyredw-uk]

I'm sorry, that last bit should have had "I'm OK. " after checking, it looks like they don't trust me when in fact they do but are showing support and concern tactfully.

Newt time this service is improved please can we have an edit button for fat fingers like me!

[2169]

My employer has let me change to bank staff so they give me dates for staff on holiday etc. Which seems to be a lot!! But if I don't feel up to it I can say no, so I don't get sick leave but I did get holiday pay by calculating days I've worked and at end of year they give me a lump sum of holiday pay...it works great for me but not everybody's cup of tea