hi everyone, i would like to collect statements for the following:-
The Work and Finance working group of the National Cancer Survivorship Initiative will be developing a model for vocational rehabilitation for people with cancer. As a first step , we would like to hear from people living with or beyond cancer of working age, about what they need, to stay at, return to and remain in work.
We would like people of working age to share their views and experiences of staying at, returning to or remaining in work to inform our understanding of what cancer patients might need from a vocational rehabilitation service. These views will feed directly into thinking to develop a model of vocational rehabilitation in cancer as part of the activity of the National Cancer Survivorship Initiative.
i am a member of the Works and Finance Work stream on the National Cancer Survivourship Initiative and also a member of the core group for the Vocational Rehabiliation Project Group, no names will be mentioned, its just statements that we are after, if you don’t want to post here then please send me a pm
many thanks
Alisonxxx
what you ideally need is a sympathetic employer which is what I had. I returned to work as soon as possible after 6 weeks (prolonged through a wound infection) and worked shorter hours for three months whilst waiting for and then getting radiotherapy, then recovery. shorter hours was 9.30 to 3.30 to avoid the rush hour.
After that I got full time work and a new job in Maidstone that meant driving 39 miles a day each way. Tamoxifen interfered with this as I couldn’t sleep so after 2 1/2 years I gave up tamoxifen so I could keep the job.
I have just recently got a new full time job so I work nearer to home but I was determined to work and to go back to work as soon as I could. I had a large mortgage and couldn’t afford not to. I didn’t have chemo but even if I had, I think I would still have worked through treatment . I was looked upon as a bit of a freak by the doctors and breast care nurses, I’ve since read about another patient who had my bcn and she took loads longer to go back to work than I did, but is featured in a magazine the hospital produced congratulating her in helping her. I went back to work earlier because I wanted to get away from them all.
Mind you some people have terrible employers and some people get on better with their doctors, but for me work keeps me going.
Mole
I went back to work 3 weeks after lumpectomy, although my employers said they would support me I was expected to carry on as normal, I am a nursery nurse so there was a lot of lifting to be done, whilst going for radiotherapy I had to leave work 1 hour earlier then normal I had 1 hours pay deducted for the 15 days I went to hospital, it would have been nice if people realised I needed more support, it semmed that once I had the operation I was expected to be back to naormal.
I took up a new job after most of my treatment. I was totally honest about my situation at the interview and on the forms and the employer assured me they would have a training and support package in place for me starting. They had 6 weeks to organise this between making the job offer and my start date. Unfortunately, no support or training materialised and the woman who was supposed to be handling it was too busy thinking about the birth of her first grandchild. I left after 3 weeks as the lack of help was affecting what confidence I had in a big way.
I was offered a chance to go through the grievance procedure which I did. The organisation said they were not aware that I needed any support and they had taken this point of view from the fact the Doctor handling the occupational health questionnaire said my only problem was slight nerve damage to my arm, yet I had elaborated on many of the multiple choice questions. Their HR manager actually told me over the phone that they had no real experience of employing anyone who had been seriously ill. This was retracted at the meeting I had with them.
I am now self employed as I didn’t want to risk this happening with another employer.
Hello
I am a full-time manager in a publishing company. I feel more education for employers is needed. My company is used to people going on maternity leave, but has very little experience of dealing with people who have been seriously ill. The workforce is mostly very young and they’re just not used to people having cancer. I didn’t work through treatment (chemo, radiation, etc) - I think mostly because my managers would worry that I wouldn’t have been able to do a good job. I went back to work in July 08, a few weeks after I finished radiation therapy. Initially everyone was incredibly sympathetic, but a few weeks later it was business as usual. I find working 50+ hours really tiring and would love to go down to 4 days a week. I have asked several times, but with the credit crunch it’s not possible as we have so few staff. I don’t want to leave, but equally don’t want to carry on working these crazy hours. I also hate the fact that I have so many hot flushes, courtesy of chemo, it’s really awkward, especially in meetings! I am also concerned that if I took a new job I’d have to declare “my disability” - although I’m not at all disabled, I feel it would count against me.
As a patient with secondary cancer, I would love to work, full stop. I also worked in the publishing industry for many years. I took voluntary redundancy when the company I worked for relocated to London at the time when I was pregnant with my first child. I intended returning to work when my second child began school, four years later, but this coincided with my cancer diagnosis and consequently I have not worked since. I do not expect to be able to work full time with all the benefits of a ‘proper’ job but I do miss the self-respect, financial and social well-being, which I feel are some of the benefits gained from the working environment.
Jenny
so sorry Jennywren to read that you’re not able to work. It definitely gives a sense of purpose, etc, (as well as money!). But I don’t feel that it’s right that it should be so “all or nothing”. There should be a middle way so people can work sensible hours. When I say I feel tired, colleagues really have little idea of what I’m talking about.
As someone with secondary cancer but who is working (4 days a week), I am very grateful that I can continue to work because as you say, Jenny, it does give me a real sense of purpose and identity as “me” rather always the cancer patient. I also feel I am still doing a valuable job which is very rewarding.
However it is very hard at times as initially there was a lot of support/sympathy/flexibility but as time has gone on, this has decreased apart from a few key people. It’s bee 2 years nearly since my secondary dx and I just feel the employers/management don’t really know how to deal with someone who is so ill and having ongoing treatment (chemo) but continuing to work. They are so used to that pattern of someone being sick, off work and then going back to work with some support before being “ok again”. Don’t think this actually works for many after a primary dx let alone a secondary dx.
One particular problem I have is with discussions regarding future plans/commitments - there seems to be no or very little understanding that when things are arranged for several months in advance I have no idea what my medical commitments are going to be - am I going to be having scan appointments? are the side effects from the chemo going to affect my ability to attend? Am I just going to be feeling too tired that week? It makes me feel as if I am an incredibly unreliable person when in the past I have always been very reliable/dependable, or sometimes people can make me feel as if I am just being difficult. It would be so good to have someone sometimes who would just be there to explain for me/negotiate for me as I do get tired of that aspect.
Sorry long post - but something I feel strongly about.
Kay
thank you everyone who has replied, its really informative, could you all think about the following as well:-
1, what support would have been useful
2, when the support would have been useful
3, Who would have been best to give this support.
And if perhaps you could give your top five tips on returning to work
lots of love
Alisonxxx
I’m slightly cynical and sceptical about the whole ‘survivorship’ initative. The ‘vocational rehabiliation project group’ may well have difficulties sorting out the gap between employer and government expectaions as opposed to the needs and expectations of those with cancer. I suspect from the government’s point of view the main aim is to get people off benefit and into ‘work.’
I was diagnosed at 54 and pleased to get early retirement on health grounds (was a teacher) at age 56. The terms of my retirement meant that I couldn’t work again in any teaching capacity not even part time, but I was allowed to work in other jobs and for a couple of years until my recurrence had a very pleasant casual job on a telephone helpline for FE teachers. (the employers have kept my job open-its a casual one so it doesn’t cost them anything but it really helps my sense of self worth…thanks to a lovely manager- though I doubt I’ll return as you’re not much help on a telephone helpline when cancer has knocked your speaking voice out.) Sadly the rules of my pension fund have now changed, and I think this is the case for many professional pension funds…and if I took early retirement now I would not be allowed to work in ANY capacity. This is wrong. I know quite a lot of younger owmen who would like to take early retirement but struggle because they know they could not work again.
I think there needs to be a cultural change among many employers about sickness and disability generally. Its not just about cancer…there are many other conditions where work practices are simply not flexible enough to accommodate part time working, flexible leave arrangements and uncertainty.
I am privileged…middle class, at retirement age now, good state and occupational pension and DLA. For younger women or those not privileged to have good occupationlal pensions behind them balancing working with illness and money worries is a nightmare.
Jane
Perfectly said Jane! I always enjoy reading your comments!
Politically, we know how this government are functioning and when I see people with disabilities (which can be physical or not) having to prove their case, I’m incensed. I listen to Purnell and seethe! It terrifies me to consider what happens next!!
I don’t have secondary cancer, but am currently being possibly diagnosed for another primary. I had to take 9 months off work last year whilst I went through surgery and chemotherapy. I went back to work in September - just a few weeks after finishing chemo and struggled.
If I’m diagnosed again I shall get paid time off because it’s the new financial year. What if it weren’t?
Were I to be diagnosed with secondary, or indeed my other breast looking like being a huge issue - I would have to take retirement on grounds of ill health. To get an enhanced pension, I would have to agree to never working again … in any job! That’s totally outrageous. I do a stressful job and might want to move on from it to cope with this disease, but I don’t want to find myself being unable to do anything.
We’re covered by the DDA - everything I’m reading sounds discriminatory to me!
Gill
your right in a way Jane, its a bit like the blind leading the blind, but unfortunately, statistics show that it is the cancer patient who has the tendency for more trips to the A&E, more time off ill, more stress (and lets face it, every lump and bump is a potential cancer), its difficult for employers, as a large corporate company may employ thousands and only have the odd cancer patient, but needs need to be met in the work place and at the point of diagnosis right through to the end of chemo/radiation/hormonal treatment etc, and at the moment both the employers and the NHS are failing miserably when it comes to awareness of the needs of individual cancer patients.
yes you are lucky to have an early pension, i worked for Social Services, but left 8 months prior to diagnosis, so i can’t touch my pension till i am 65, lets hope i see it!
and yes its very wrong when you can’t work due to pension restrictions, but its even more wrong when you can’t get a job if you have had a cancer diagnosis, and contrary to popular belief that employers do not discriminate, well, who in all honesty would take a lot of us on in this current economic climate?
lots of love
Alisonxxx
anyway, its by hearing about cancer patients experiences that will help in the long run, i have applied for many jobs in the last six months, i have not even had an interview even though i have ample qualifications and experience, maybe i should just forget about working in the field that i used to, but then, why should i?
anyway, hopefully the employers of the future will be more cancer aware, and cancer patients will be better educated in their rights, and if the NCSI can go part way to achieving this, then i think it will be a job well done, yes i know we can all bleat on about the earlier cancer initiative in the early part of 2001, but at least now they have more cancer patients in the seven workstreams, i really hope that we don’t give all this time up for nothing. so before we all become totally cynical, why not fight for our rights?
Alisonxxxx
I am interested to hear you say that about applying for jobs Alison, as I had exactly the opposite experience. I moved back to Scotland from London and was having a nightmare finding a job, then I had to take a year out to be my dad’s carer. After he went into care I went back to jobhunting and couldn’t get an interview to save my life. I was overqualified and had too much experience for the job market locally so I registered with most of the agencies in my nearest big city which is Edinburgh. However, the agencies there warned me that employers in this area don’t generally like employing people who worked in London for a long period. It was during this time I found out I had BC and was then signed off sick for 14 months.
Three months after finishing treatment I started applying for local jobs again and I suddenly started being invited for interviews. I declared my health situation on all of the application forms.As most of the jobs in my area are public sector I assume I was filling some sort of quota or equal opportunities criteria (the NHS equal opportunities form was ridiculous - I don’t see why they need to know whether you have ever contemplated or are about to have a sex change; I kid you not, this was one of the questions). The job I went to which was such a disaster was public sector and it was pretty obvious after about 4 days that I was there to fill some sort of E Opp target they had with regard to DDA. I am afraid I’d rather be employed on merit, not because I’ve been ill. The whole experience was a big factor in me deciding to bite the bullet and become my OHs business partner.
Hi Cherub, i think the problem i had was that i had the dates for most of my surgery (seven ops in 22 months one not cancer related), and of course i had to declare them as i knew i would have to have time off, but now i am not sure that i have the confidence to return to work, as i have recently had a TIA, so yet more drugs and more side effects, but i enjoy doing my bit for the NCSI, it gives me a lot of focus and something that i feel is worthwhile.
good for you doing what you want to do, and yes, i find being regarded as “disabled” quite disturbing.
Alisonxxx
I am completely alienated and excluded by this sort of thing. It just seems like a hunk of public sector committee-speak buzzwords.
I am a freelancer and have been all my life. We always slip through the cracks when it comes to “initiatives”. I have no comfy pension plans. Nothing. When I finally get my wind back I will just have to get out there again and chase/create work. Nobody is going to cut me any slack for my illness - but then nobody is going to ask me to fill in idiotic Equal Opp forms about my sexual preferences either.
What I need now is for the benefits people to get off my back. This Govt’s determination to bully single mothers into work coupled with the changes to Incapacity Benefit means I am obligated to sit in an open plan office with some drip from the DSS whilst she asks me if I have incontinence and if that will stop me from stacking shelves at Budgens.
your not alone there msmolly, later on in the year the Works and Pensions workstream are going to look more closely at the way patients are treated especially whilst having to attend the job center, a lot of patients sit on all the workstreams and i think most of us have had a bad experience at the hands of unthoughtful and uneducated civil bloody servants, i shall keep you updated as and when they start on benefits.
lots of love
Alisonxxx
I think I was fairly lucky with my employer - they’d always been flexible with hours (I’d also been allowed to make up time lost when children were sick rather losing pay/leave). They also paid for an arm support for me to use at the PC. Colleagues, mostly men, were helpful and understanding.
They were, however, extremely mean with sick pay - I was only entitled to 10 weeks annually and had already used two for a knee op when I was diagnosed with bc for a second time.
SSP doesn’t feed many hungry teenagers, so I found myself working through chemo and rads through sheer financial necessity - and having to beg for the latest chemo possible on the day so that I could go to the office for a few hours beforehand. Very, very stressful. The icing on the cake was the nurse who told me that she was entitled to 6 months ‘on the sick’ at full pay!!!
With lymphoedema now in both arms, I don’t see myself ever putting in a full week at an office desk again, although I am able to work part-time from home. I’m lucky - I opted out of SERPS and went down the private pension route, which meant that when the legislation changed to enable access to pension funds at 50, I was able to take full advantage of it.
As others have mentioned, the after effects of cancer treatment are little recognised in the workplace. The disease seems to be regarded as having only two outcomes: ‘success’ - cancer zapped, fried, cut-out or otherwise blasted with smiling patient heading towards a nice new shiny future or ‘failure’ - where one departs this world looking pale and interesting. The netherworld of living (and trying to work) with a variety of possibly permanent and disabling side effects and/or with active cancer is a little visited area.
And the credit crunch won’t help. It’s a shame - it’s cheaper in the long term to help people to remain in some kind of paid work if they possibly can (and want to) than consign them to a life on benefits…
X
S
Hello Alison and everyone who’s posted a comment.
I started reading this forum with interest having just been diagnised with breast cancer. I’ve just had surgery and get results next Thursday.
At the moment (and I don’t expect that to change) my employer has been absolutely fantastic. My T&C’s of employment allow me to receive full pay for 26 weeks and then if necessary and I’m unable to work then I will be put onto private health insurance which is 60% of my current salary. I’ve worked at my current company for almost 10 years and during that time have been fortunate to have been ill previously therefore my absence record is very good.
From the outset though my Senior Manager has been so supportive and has reassured me that they will do everything they can (including additional financial support if I need it). That reassurance has been wonderful for my well being as I can concentrate on fighting this bloody horrible disease rather than worrying about whether or not I will be able to support my family, keep my home etc.
Because I have a very open relationship with my manager (and company) I have been in constant touch with them about what’s going on, how I feel etc. Only time will tell if I will continue to want to be so open about how I’m feeling (there’s always that thought at the back of your mind that if you show a chink in your armour then the company might think I’m unable to cope with work pressures). Only time will tell if my manager is able to continue to offer such wonderful support. It’s the start of a long journey for both me and the company so I will keep you posted as to how things progress.
In time then I hope to fully be able to answer the questions you asked about what support would have been useful and when etc.
In the meantime though is there any literature for both me and my employer about cancer in the workplace. I’m conscious that this is the first time the company have had to face a serious illness in the workplace so it’s a learning curve for us all.
Thanks everyone for posting some interesting and thought provoking comments. Take care all of you and good luck. xx
Hi Daisy, at the moment there is no litrature that i know of but i know that BT have very good guidelines on how they treat cancer patients, so maybe your employer could get in touch with them to see what they can tell them.
thank you so much for your interest, and i really hope that your results are good
lots of love
Alisonxxx