Hi Happyshopper
like Lizcat I can identify with everything you are saying. It has all just changed for me, and I can’t go back to how I was before.
good luck - I hope in a years time we have a ‘life is better since I retired’ thread
love, monica x
Lizcat, thanks for the advice about writing it all down for your phased return. I’ll do that for my meeting on Wednesday. I’ve had all the comments from colleagues (which are nice in their way) about looking great and good to see you’re back to normal etc and know that people really have no idea about the problems you face.
I know we will all find different ways to cope and echo what the others say that hopefully in a year we will all be settled in one way or another. It does help to know I’m not the only one struggling with this.
Thanks ladies. Jan xx
Jan - good luck for Weds! Even though I thought I was ok for a return, I had way under-estimated the changes bc had brought to me. The best advice I was given by the union lady and consultants was to ‘walk out’ if I felt I wasn’t coping even the tiniest bit and that I wasn’t a wimp for doing that. It felt like that at the time but I have absolutely no regrets now.
Monica - a thread one year on sounds good to me! Last Friday was the first anniversary of my retirement being granted and I had an email from a friend last night to say how proud she was of me that I’d adjusted to my new life within a year especially under the circumstances of bc. Could have cried, it was so sweet…
Liz
Hi
I worked in a job that I loved and had been doing for over 25 years. I struggled into work whilst having chemo and rads. Some days I felt just dreadful. Once I returned full-time after the rads I realised that it wasn’t where I wanted to be. I’d always loved my job but BC changed me and what I wanted out of life. I was lucky. I was offered early retirement which I took. Now I wonder how I ever found time to work. My days are full and I love every minute. If you get the opportunity - go for it.
Mal x
Like maltomlin, I used to love my job, after BC I was different - and once I acknowledged this, leaving became the obvious choice. I too feel guilty that I don’t want to return to full-time employment when I’m not actaully ‘ill’ but I just want a different type of life right now.
Whatever our circumstances, we rarely stay the same through life; that’s not what life is about.
And regarding the world of work, most jobs arent for life anymore, attitudes to work have changed and its much more common to have a series of jobs. What I’m trying to say is it may not just be a question of going back into the same job situation - if you don’t want to return to your old job, there may be something else out there for you.
Hi. I’m new to the bc forum, but have been having a difficult time about returning to work, so decided to join to see if I could find some support. I’ve only been on here about 10 mins. and already I don’t feel so alone with all these feelings. I work in the caring profession but have found my manager to be extremely unhelpful about my return to work. I feel really hurt by her attitude but it has made me realise that perhaps it is time to change. It’s a great help reading how other people have coped, as my confidence is in my boots. So glad I found this web site!
hi all, i’m in need of advice. my story…
i was had lumpectomy and lymph node removal (twice as they never got clear margins), followed by 4 x fec and 4 x tax and rads, all in 08.
09 i had full hysterectomy, (oes+ & gyna cancers in family).
i have now been told that the pain and weekness in my surgery side is likely to be nerve damage and likely to be permenent.
have bone pain and weekness in my legs (started with tax) and i tend to stumble often and have fell.(awaiting to see a neurologist) i have been off my work for 19 months now. I was a pupil support assistant and know that i can’t go back and do the same job. i wish i could because i loved my job.
problem is - occupational health has said i’m unfit to go back.
my union official went and had a meeting with HR behind my back ( not happy about that, thought union was for me)and they both decided to put me forward for ill health retierment, i haven’t been given a choice or offerd any help like a different department with light duties. I don’t even know if i can do that, on a good day - maybe but on a bad day definately not.
unison told me that i might not meet the criteria for my pension so they would give me a capability pay off. if i take my pension i can’t work for the council again and if i do i have to give back my pension (i’d be lucky to have £20 from them - not enough for the bills). if i get capability pay off (like redundancy) then they might consider re-employing me if i got better. (never said they would re-employ me).
i still don’t feel very good and feel like i’m being punished for having cancer because really my HR officer has no compassion. my union rep told me that because the scottish government has not gave the council funding then they have to cut back on jobs.
so basically i’m just a convienence for them - get rid of the long term sick!
what do i go for my pension or do i ask for capability pay off?
still have things to pay for.
this is causing me a great deal of stress and making me very depressed. maybe i should accept that things are different and won’t be the same (used to be able to go to the gym)and just move on and do what my body will let me. i don’t know anymore + please tell me i’m not the only one but my memory has got very bad. I can read a page of a book and forget what i just read a moment later.
when i have a good day i feel a fake because i’m not back at work but on a bad day i’m in alot of pain and in bed because the pain killers make me drowsy.
Hi Vodka
I’m appalled that your Unison rep has discussed your situation with HR without consulting you - its just not acceptable. Also the comment that the Council hasn’t had funding from the Govt and therefore need to cut jobs is callous, naive and irrelevant.
Is there anyone who you could ask to support you in a meeting with HR and the union rep? They are so out of line discussing your case without consulting you, that they owe you that. It would also be worth asking to see the council’s and unions policies regarding ill health retirement, redundancy and capability procedures so that you and your supporter are in a strong position. also your local Citizens advice bureau and Macmillan may have services that can support you.
I wouldn’t be making any decisions without having the support of someone that you trust to be working in your interests.
As far as coming to terms with your changing abilities, I know we’re all different, but I had a mastectomy and lymph node removal in 1997 and it took a few years, but I have regained normal feeling and strength in my surgery side, and I hope you will see some improvement over time.
It sounds like you are having a rotten time and I hope the problems that can be resolved soon are.
good luck, and love
monica x
Hi Vodka,
While you are waiting for replies, here is a link to one of BCC’s publications called the Employ Charter, which sets out best practice for employers in the workplace:
breastcancercare.org.uk/upload/pdf/A5_EMPLOY_booklet.pdf
I hope this is helpful.
Kind regards,
Kate, BCC Facilitator
hi Monica, thanks for your comment, i really appreciate your advice. I forgot to mention that my union rep is also employed by the council but she works in the finance department!
My hubby is going to phone the head union rep and speak to her. my union rep also blasted occupational health, telling me that they are more in favour of the council than the employee. Now i feel that unison is just the same.
Hi Vodka I am so sorry to hear about your problem this must be terrible for you. I would advise you to call the advice centre in Bathgate they did it all for me. They do on behalf of the McMillan they have got special advisers there the mans name is Jim and he was fantastic. Ive just had my 3 year mammogram 3 weeks ago and my 3 year check up and all was good. My husband has got throat cancer hes just had his voice box taken out and they sorted all the stuff out for him as well I live in Fauldhouse and we both attend St Johns in Livingston. My husband is originally from Broxburn and I am from Glasgow. I really hope you can give these people a try they know what they are doing Love Linda x
Hi everyone,
I’ve been meaning to come back on here for awhile, because I’m finding it so difficult being back in the workplace, like many of you. I am a care worker and have just finishes 6 weeks of phased return, starting with 3 hours one week, 6 the next two, then 9 hours. i know that isn’t much, but I’m proud i even managed to do that after the way i have been feeling. I would rather not go back to paid work,but my husband has taken early retirement due to ill health. We are just surviving financially, but we need more money coming in for household repairs and to pay back our overdraft and credit card. My incapacity benefit came to an end, being deemed well enough to go back to work. I really don;t know how it is all going to pan out this year, and like someone else said, the worry of it all causes more stress we could do without! When i speak to occupational health about how hard I’m finding it, I just burst into tears and feel so embarrassed and pathetic. It is so hard to explain how slow my brain is now, how poor my concentration is, and how low my confidence has fallen. If anyone says anything negative about me at work I get extremely low and think I’m worthless. Does it get any better over time? I’m on Tamoxifen for at least another year ( dx Feb 2008 ), and currently waiting for a biopsy on my remaining breast. Sorry i’ve written so much, I know others will understand. I just feel the government shouldn’t expect anyone who has treatment for cancer to go back to work at all, but should gladly support us until we feel able, or choose not to. What do others think? Is this something BCC could campaign about? I would feel so happy doing some voluntary work, without the pressure of having to go in and meet people’s high expectations, then feeling a failure when it doesn’t go well any particular day.
Thankyou for listening!! By the way, there is one thing which is helping me get some confidence back, and that is doing some studying at home with the Open University. It’s free if you are on certain state benefits. They are SO supportive and encouraging, and I’ve been amazed that some of my brain is still working, when I concentrate on my own at home.I would recommend it to all of you.
Ann.
I am very interested to hear about your study and how it has helped you regain some confidence Ann. I started a distance learning course last year for an advanced certificate in Copywriting last year and have found it has improved my concentration and has given me something to focus on because I need this for work. It has also been very challenging - I had always been somebody who had to write big reports, correspondence, minutes etc for work. I’ve had to learn a new style of writing as what I do now is very pared back (I write things like copy for websites, also training manuals for clients etc). I think if my OH had not persuaded me to take this course I would have just ended up with little or no cognitive function, therefore no confidence. I’ve found regaining your concentration is something you have to work on.
I do voluntary work as well, a few hours with a homeless charity and I’m currently assisting with teaching basic cookery via this. I don’t think I would have done this prior to having BC.
Hello again to all,
i have just read all your comments - can’t tell you how much its cheered me up to know that there are indeed others who feel exactly the same as me - not to say I’m pleased that you are all going through the same thing, but doesn’t it just show how this is so much more than a diagnosis and the “ripple effect” diagnosis and treatment has on us as a person.
Ann, i read your post - it was like I had written it - i feel exactly the same. I too burst into floods of tears in with OH. In fact , did it there last week ! Went along to say how I still wasn’t coping with things , when as soon as I sat down , burst into tears and proceeded to cry through the whole thing! what must they think of me?
Yes, I too feel tired, forgetful, concentration is just awful, confidence has completely gone, and i too would love to give it all up and just do some volutary work, where the stress of getting a job right is taken off me, and I can just do it for the enjoyment, at my pace …
Anyway, needless to say OH sat there, listened, looked sympathetic and then asked " what drives you on , why do you still want to work?" I said I don’t , gave my reasons and said that I can’t afford to give it up. Felt like she hadn’t listened to a single word I had said. I just wanted to scream at her that if I didn’t have the stress of coming to work, how much better I would be. She then went on to say in an in-sincere tone that maybe some more councelling would help - no, just let me get rid of work, then i’ll feel better!!!
sorry, having a bit of a rant here. Will go and have a cup of tea and calm down.
XXX
Hi all,
I’m posting on behalf of my wife, Vicky, as I’m the household’s resident techie. She’s just 34 and was diagnosed with secondaries almost 5 years ago. During the initial stages of treatment - radiotherapy, tamoxifen, arimidex, 2 lots of spinal surgery and FEC she always got to work as much as she possibly could although this was phased down to 3 days a week with 2 discretionary rest days.
However, following the Taxotere chemo she started last June and finished in October, she has been unable to work at all and is now struggling just to get out of the house. Her occupational sick pay entitlement finished in September and from then until the end of December she was on SSP. Having got her union involved in September, her employer agreed to full salary for January and half pay for Feb & March. Vicky also receives DLA at the higher level due to the special rules.
Given her general poor state of health and the environment in which she worked, it is unlikely that she will ever be able to return to her job or indeed any other form of employment. Unfortunately, despite continual service of 17 years (through 3 employers), Vicky does not have a pension. (Funds were always tight and we hoped things would improve as I don’t have a current pension either).
I am due to speak to her union rep and HR in the next week or so and I am loathe to tell HR that Vicky will never be in a position to return as I fear they would terminate her contract due to ill-health. (Possibly not the correct wording but you get the idea). Even if she retires on medical grounds this will effectively mean a straightforward resignation due to her lack of pension. Short of relying on my salary & Vicky’s DLA and possibly ESA, is there anything she can do?
Many thanks,
Stuart
Hi Stuart,
It sounds as though you need to talk to someone who knows about state benefits and employment law. Depending on how long your wife has been with her current employer she may be entitled to a compensation lump sum if she is dismissed. There may be other benefits you are entitled to such as Working Tax Credit and help with mortgate/rent/council tax. Have you been in touch with MacMillan? They have advisers who are very good in these fields and can meet you at home if your wife isn’t able to travel. You can find your nearest adviser through their website. Often there is one based in the hospital or at your Citizen’s Advice.
Hope this is helpful. Jan x
Hi Jan,
We have been in touch with Macmillan and they helped sort out the paperwork for the DLA. Vicky is in regular contact with her nurse and spends quite a bit of time at our local hospice too, so I’m sure we can get some advice from there as well.
I guess one of my concerns is with Vicky’s employer. She TUPE’d across to them in April 08 and having been dealt with very well by her previous company, her new bosses didn’t know what to do with her or how to treat her. I really don’t think they have any idea of quite how debilitating the cancer has been for her both physically & mentally.
Unfortunately it has been very much an uphill struggle even with union involvement to get anything from them to help, as they have been treating her like a long-term malingerer rather than a person with a terminal illness. I’ll have a chat to the union rep and Macmillan to see if there’s a way forward.
Thanks for you help, Stuart