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Returning to work after a terminal diagnosis
Mon, 08/02/2010 - 14:59
#1
Hello,
I was wondering if anyone has returned to work with a terninal diagnosis. My onocologist has said that she cannot determine how long I have but will support me in whatever I decide to do.
I'm at the point where I don't want to close the door totally on my job but just want to have the opportunity to see if I can cope with even part time.
I have posted on here before and would just like to know others experiences.
Thanks
Chris
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Hi Chris
I'm also considering going back to work after being diagnosed with secondaries in my brain, liver, lungs and bones last June. I'm physically fit after 4 months of chem which finshed on October. However because I was working abroad teaching when I was diagnosed, I don't have a job to go back to. I would like some part time teaching but don't know how an employer would feel taking on someone with a terminal diagnosis. In the past, when I had my priamry diagnosis I had fantastic support during and after treatment with a phased return to full time work, but I was in post, not trying to find a new job.
Have you discussed returing part time with your employer? The thing I found most difficult last time was the fatigue and found that working half days worked better for me that a couple of full days a week.
Louise
Hi Louise,
Thanks for your quick response. I'm meeting HR and my manager on Thursday. I work for the local authority and we have discussed maybe two/three mornings a week. I still have to see occupational health who actually decide what I can or can't do.
Could you consider doing support work? I don't know what you would have to disclose. I don't really know much about the disability laws and data protection. Hopefully someone on here will have some answers for us.
I'm so pleased you are keeping, thats for both of us.
Take good care of yourself.
Love
Chris
Hi Steris,
I retuned to work after being diagnosed with primary bc and lung mets in 2007, and managed to work slightly reduced hours for a year before before going on long term sick leave and finally taking early retirement. I made the decision to leave because my energy levels were so low I didn't feel I hd any left for my family and me, and although I still miss aspects of my job, I do not regret the decision either to return to work or to leave at the right time for me.
good luck whatever you decide.
nicky
Hi Chris
My mum has worked part time since her children were old enough and worked throughout original breast cancer treatment and since being diagnosed and treated for sceondaries in lymph nodes, skin and bones last summer. She’s lucky that her job (as a buyer for a pharmacy) is fairly flexible and she can work whatever hours she wants as long as the job gets done. I think it’s become a struggle recently as she’s become paralysed in her right arm meaning amongst many other things she can no longer drive so has to take two buses to get there and she’s exhausted all the time. I think it’s one of her ways of keeping a slice of normality though so will support her continuing to work as long as she wants to. I can imagine it’s very much up to the individual how they feel. There is no way my mum be able to manage a full time job any more as her days are already divided into 'good' and 'bad' times.
Felicia
Hi Steris,
I was diagnosed July 07, tried to go back to work on a phased basis in Aug 08 but only lasted 2 half days a week for 4 weeks. It was just too much for me. I went off sick again (with consultant's full support) and then in Oct 08 I asked to be considered for retirement on ill health grounds. I had no idea of any monetary amounts involved re my pension but knew I had to take the risk. Exactly 1 year ago I was granted full retirement which means I do get my pension as if I'd put in all my years but I'm not allowed to do any paid work ever again should I want to. Fortunately, I've no kids and no extravagant lifestyle so could afford to do it.
Word of warning - it's taken me almost a year to settle into my new life. However, I wouldn't swop it for anything now and am really content and settled.
There are a couple of threads relating to retirement due to cancer on the forums so have a browse! You could always look into the possibility of retiring but then doing voluntary work if you thought you may get bored....
You must do whatever you feel is best for you and don't feel guilty about it - I had dreadful feelings of guilt and a sense I'd failed but have come out of that now.
Good luck, Liz
Hi,
Sorry Louise I meant supply teaching - not support. Certainly still have a chemo brain.
Thanks - you for all your replies its good to hear other people's experiences. Most of my days are good days. But I still have days where I'm very tired, so I can identify with your experiences.
All I can do is wait and see how I cope with the stresses of the job and if its not for me I'll hang up my boots knowing that I tried.
Thanks Liz I think if this is too much for me I will volunteer with a charitable counselling service my sister runs. It will just be admin once a week. I just feel I need to keep my brain as active for as long as possible.
Love & best wishes to you all
Chris
Hi Chris
I returned to full time work weeks after a diagnosis of secondary bone mets. The return to work was all planned beforehand and I decided that I would go ahead with the phased return and see how it went. Althought I do a stressful job I am sitting down - could certainly not stand or run around all day - and I am enjoying the normality of my work. I am on my 4th session of Carboplatin (next one tomorrow) and althought I do get totally exhausted at times during my chemo cycle returning to work has been very positive for me at the moment. Bottom line is also that my income gives me a good standard of living but I would not do it if I did not enjoy it and the 'normality' it gives to my life.
It is a very personal decision and we are all so different with jobs that require different things. I wish you all the best with your decision, mine has been the right one for me at the moment.
Love Anne xx
Hi Everyone,
I returned to my part-time work (NHS occupational therapist)after initial treatment, after primary and secondary diagnosis in 2007(spread to liver). I already worked part-time (I do quite a bit of voluntary work too) but still had a phased return, and although I am sometimes utterly knackered, have managed to keep going and fit around regular hosp appts for herceptin, scans etc. Sometimes it all feels a bit too much, but mostly I really enjoy it and, as Felicia said, it gives me a slice of normality and keeps me from dwelling on cancer all the time.I am actually doing better than expected, so it's nice to feel I have some purposeful contribution to make, when I get those 'what am I doing with my precious life' moments.
It really is such a personal decision. I think I am right in saying you have the right to reduced hours when you first go back, and the length of time that goes on is for negotiation between you and your manager. We are also protected under the Disability Discrimination Act - employers have to make reasonable adjustments to our work to suit our needs. The good thing is voluntary work can be just as satisfying as paid work, so even if you thought you had 'burnt your boats'by taking retirement, you still have loads of skills that can be put to good use and would be gratefully received by any organisation.Good luck Chris and Louise - hope you find a good solution
Jacquie x
just a quick reply will write more tomorrow as on mobile. I've been working full time all through sec dx and continuous chemo since Nov 08. Just about to change regime, so will see what this one brings. Nikki
Hi,
Well have my meeting with HR and my manager tomorrow. I have decided to take a work colleague with me for support. Plus I don't trust my memory and I want to try to take all my options in.
Any questions you think may be relevant do you think you can let me know so I can bring them up at the meeting.
Thank - you so much for the replies they really do make a different and are supportive.
Hope everyone is well. I have a couple of bad days, but feel a little better today.
Best wishes
Love
Chris x x
Hi Chris
I'm not sure how long it is since you finished chemo - or did you not have it after secondary dx? I found it was a good 6 months before I felt anywhere near 'normal' and my energy levels were not as good as usual. However I worked thorough chemo in 2008 after my sec dx - on the 'good' weeks and it really helped me adjust. I have continued to work but luckily I have a sit down, telephone job for only 3 days a week - all of which are flexible. I have been very lucky with this but unfortunately am not in a position to take early retirement. Working and getting out of the house is a great leveller and I really enjoy it - I'm not sure what I'd feel like if the job or place wasn't as good. Maybe you can start back with reduced hours and build up to what you feel comfortable with? As Jacksy says we are covered by the DDA so allowances have to be made. Everyone if different so I'm sure you will find you own solution but, having read one here before, don't take any crap from your employer!
Nicky x
Hi Nicky,
Thanks for your reply. I didn't have chemo with my first dx as it was stage 1, 17mm tumor. So the standard treatment is lumpectomy and 15 sessions of radiotherapy. So this was the first time I was offered chemo.
I finished chemo on the 21st October and to be honest still feel light headed with it all. I was talking with a friend today she 10 years older than me and we both decided we have some sort of dementia. Stopping mid sentence, can't remember names/places and the classic going upstairs to get something and can't remember what you went up there for.
I'm taking a work colleague with me to the meeeting and she make sure I'm ok. She always telling me I do to much. I do realise that after being so ill I'm just not the same person I was before the secondary was diagnosed.
Looking out of the window I have a feeling that the meeting eon't happen. Theres about 4 inches of snow outside and my manager lives out in the sticks.
I'll let you know how I get on.
Love
Chris x
Hi Chris
BCC have published information relating to work issues, it's called the EMPLOY charter and you can read or order a copy via the following links:
http://www.breastcancercare.org.uk/healthcare-professionals/publications/financial-and-practical-advice/
Best wishes
Lucy
Hello,
Well we were completed snowed in last week so the meeting never did take place. Since then I have felt quite ill which has dented my confident. I was in bed all day Tuesday, never been so sick in all my life. Starting feeling better today, so will just have to wait and see what happens
I have now have had the meeting schedule for 9.30 on Monday morning so not a lot of notice. I've managed to get someone to come with me to take notes. At leas this will give me some idea of what they are offering and see what conditions there are if i decide not to return to work.
Thanks Lucy I have printed the Charter off and will read it over the week end.
best wishes
Chris x
Hi Chris
I went back to work full-time after chemo - almost 3 years ago now. It was hard at the outset but I love my job and I think it has kept me alert and interested in life. However I do tire more easily than I used to so last year I decided to take a sideways move to a job with fewer physical demands (my earlier role meant lots of flights, long hours etc etc) and I have now taken the decision to take early retirement. I confess I have mixed feelings about doing so but I'm not as interested in the 'new' role as I was in the old and I've managed to come to a very good redundancy agreement with my company - who have been really great throughout this. So - I'll be on the lookout for some interesting voluntary work and fingers crossed I can fill my days. It seemed sensible to make the change while I was reasonably fit and in a position to look for new interests.
Hope your discussion goes well Chris and you get what you want.
Hi everyone,
I'm interested in this thread. Dx primary + bone metz June, 09. Due to return to work in July this year. I've finished 6 months of chemo and now on Tamoxifen. I wouldn't see a prob if Tamoxifen carries on working for me. A bit worried about the day Tamoxifen fails and have to go back to chemo - don't think I can manage fulltime on chemo.
My company has the "work-at-home" policy, which I would gratefully accept if I'm offered it. Because it would take about an hour train journey to get to work. I'd be tired before I start!
To sidetrack the subject a little bit, if you don't mind... My work involves sitting in front of computers all day. Some of my friends and families claim that the radiation from computers can cause cancer. I was laughing it off because couldn't face the consequence of needing to change my career. Can anyone back up/dismiss this claim?
Hello,
I finally got a meeting arranged on Monday. It went very well and they have offered me a phased return maybe two/three mornings a week. This now depends on the outcome of the occupational health assessment. They said they normal expect people to be back full time between 6 - 8 weeks but have extented this to 12 for me.
I told them the one thing that has put me off is my working environment. I have complained before I became ill but to no avail. Basically my office is a cupboard with electrical equipment on one wall and the boiler house on an other. They have agreed to move my office for me and hopefully this will be done before I go back.
I have real mixed emotions. I have now been off work for a year so the time factor concerns me and also how long I have left worries me, but as others have said I want just want a bit of normality whatever that is. I know eventually this disease is going to get me but while I feel well I will do as much as I can to feel like me. (if that makes sense?)
Lizcat - thanks for your response it certaintly makes sense to me and if I'm can't/don't cope thats the route I'll be taking. I know what you mean about the guilt, but I have promised myself to be honest with myself and everyone else. I sure I can adjust I haven't been out to so many lunches in my whole life and I've made an effort to see/catch up with people I wouldn't have if I'd not been ill. It's sad when this is what it takes but I see it as as making memories for others when you are no longer here. Sorry if that sounds I bit dramatic but I can only write these things down to my cyber friends as my family/friends get upset if I mention anything relating to death.
m1yu - I hope Tamooxifen works a good long while. I hope your firm offer you a work-at-home term of employment. I really don't know anything about computers and the effects/causing cancer. Maybe there has been some research done? There maybe some knowledgable people who can help you. Maybe start another thread? I hope your return to work is successful and you get what you want.
Take care everyone and I hope you are all keeping well.
With best wishes to you all
Chris x
Hi Chris,
Good to see you've got a longer phased return - mine was supposed to be based on a 3 month plan with reviews as we went along but that went by the wayside before my first 'week' back !! Work can have the best of intentions but at the end of the day, there's a job to be done and everyone has their own pressures and your difficulties can easily get swept under the carpet (especially if you look 'ok/normal').
Nice to hear you've negotiated more pleasant working conditions - your old ones sound a nightmare even if you were 100%.
I really hope it goes well but please remember you're the most important person in it all and if it doesn't feel right, go off sick again and take more time (and try not to feel guilty about it!!!)
Liz
Thanks steris, I think starting a new thread is a good idea. Hope your meeting goes well on Monday.
Take care
Hi,
Well I've finally got my date for occupational health. It not until the 11th march. I'm pretty fed up with waiting and wished in some respected I'd gone for early retirement. I feel I've been messed about and feeling cheesed off today.
I don't know if anyone has gone over the 1 year's sickness and how this affects your pension. My employers stop paying me on the 12th quite ironic really. Just want to know if anyone has any experiences to share with me.
I think I'll give my union rep a ring although when I have tried to contact her before I didn't get anywhere.
Thanks for reading rant over.
Chris x
A meeting is booked with my employer for next Fri to discuss any issues related to returning to work. Will definitely discuss the "work-at-home" option.
For those of you who have been through this and are going through this. Any other issues I should include that may of help?
Steris: hope everything goes well with your return. Work does give us some normality in life. And yes, I can't wait for the day I start working again.
Take care
m1yu
Hi Chris,
I've just returned to work this week on a phased return. I did 3 half days this week and will build up my hours over the next 12 weeks.
I was very fortunate to have had 6 mths full pay and 6 mths half pay which was due to run out on 13 March. After that I would have been on pension rate which meant I would still have an income equivalent to the pension I already accumulated (33 years conts) but with no further accumulation of my pension contributions. Have to say I've stopped worrying about my pension though knowing that I'm not likely to be around at 60 to collect it.
I would most definitely give your union a call. They will have pensions specialists and will know what is in your terms and conditions relating to your pension and sick pay. They'll be able to discuss options for you and have the benefit of previous case studies.
Best of luck, Jan xx
Hi,
Thanks for your replies just to top everything off I now have shingles which has just about put the icing on the cake.
I'm seeing the OH on Thursday armed with all my medical info. The last letter from the onc said NED which is the best I could have hoped for.
Jan will contact my union rep on Monday probably left it a bit later but better later than never. Don't think my head's been in the right place.
Will let you know how I get on and thanks for you wishes
Chris x x
Hello,
Just to let you know that I finally got my date to return to work. Seems like a ages since I started this process. About 3 months I think.
had along meeting with my team leader and ironed out all the creases, there are bound to be more when I go back on Monday.
Feel a little anxious as its been such a long time but I have decided to shadow a work colleague for the first few days.
It has been agreed
T
hat I do 3 hours per morning Mon,Wed & Fri so I don't have to work two consective days. So hopefully this will ease me in gently.
I hope everyone is keeping well
Love
Chris
xxx
hi my name is nicky, i was diagnosed with terminal cancer last april with only month not years to live. i immediately left work sick on sick pay and now am looking at retiring. i sometimes feel incredibly guilty that im not working, however i feel i should enjoy life. everyone has been amazing, but i still question myself.
Hi Nicky, I am so sorry about your prognosis, and that you find yourself in this position. I think that your body and mind have really been put through the mill recently, giving up work is probably a wise choice. Your free time will allow you to take things a little slower, relax and take time to enjoy things which we are normally running around like headless chickens after. Like you I have stopped working, the cash would be handy as I have 3 children to look after, but-I am spending my time with them and enjoying their company. I enjoy taking the dog for lovely long walks and spending time with my family and friends as well. Why should you feel guilty? This is your time now, don't waste precious time with negative feelings....enjoy your life!!! love and hugs to you...xxx
Hi Nicky,
sorry to hear about your diagnosis, you say you were given months last April, well you are well on your way to a year and from then hopefully the year will be years. Many people on here have extended a short prognosis to many years.
Don't feel any guilt, you have to totally put the need of you and your family first. Enjoy your life with no regrets!
Hi there,
After having a really bad prognosis when I was given the news that the cancer had returned on the 5th Feb last year, I stopped wprk and got involved in chemo and such. I still popped in on a regular basis, soo when I had haulted treatment I felt I would luv to get back a sort of 'normal' life, so returned for 3 days a week x 3 hours.
It was the best thing that I did as the social aspect of work realy gave me a boost instead of sitting at home, doing nothing much.
This was a sucess till I had to go on some more chemo and hed to phase it down to a few hour a few days a week, my boss was so good, they let me reslly pick and choose when or if I went in. It broke my heart to not go in at all, which is what I have had to do, given the news that I was dying and very soon.......
Just want to say though, it was worth all the tiredness it created and would do it again if I ever got fit enough to climb the stairs in order for me to clock in. LOL
Now I am a seasoned lady that lunches, long may it continue, many are people from work, so I do catch up on the news.
I do hope you enjoy it, just pace yourself and I'm sure it will do you the power of good.
hope some of my rambles help
Clare xxx
Hi Potmaid, just wanted to say I've seen how supportive and warm hearted you've been to lots of people on the forum despite your own prognosis so would like to send you a big hug just for yourself xx