In recent weeks I have been asked several times, to talk about the issues of work and cancer, and during my presentations I have heard some very powerful personal stories about the practical issues involved. There was an extremely positive story, where a position was created especially for someone who could no longer do their previous work because of their illness, but all the rest have been terrible. Child care, financial and benefit issues, and a total lack of opportunity once cancer is declared as a disability have been all too common. 
The massive positive though is that as I have continually worked to publicise these issues I have been invited to share my experiences and collaborate with decision makers in the N.H.S who want to understand better how we can improve things for people living with cancer.
Work is so important to us all. It gives us financial independence and a feeling of wellbeing as our value in society is confirmed. We have an identity amongst our peers, and most of all we feel valued by our colleagues and people who may need the services we provide. Just imagine for a moment that illness had taken all that away. Having to complete any new application for work and tick the box to say you have a registered disability (cancer,) this apparently to stop employment discrimination! Funny I never heard from the one job agency I signed up with after I completed that form? Below is Lynne’s story which is very current, and describes exactly some of the issues I have mentioned above.
“As you know I came to Chris’s (Lewis) talk/presentation. I felt that his own personal story was powerful and inspiring however I personally didn’t know how that could help me with the issues I am having regarding work after cancer. He did touch on some things eg being entitled to a phased return to work, not being discriminated against due to cancer etc. But for me the problems are very different. I was working when diagnosed with cancer and had to stop working almost immediately, although my workplace were kind enough we eventually parted via medical redundancy. Ever since then I have struggled. The type of work I am experienced in and love is extremely physical and demanding on the body and as such I tried other avenues to return to work. I worked at a tourist attraction where I dealt with the public via the shop and admissions, I was expected to be on my feet all day, I asked for a chair/perch stool to help me cope within the fatigue and pain I suffered, they completely refused! I managed 6 months before I had to give in and leave, because I came home in tears every day due to the pain and chronic tiredness.
I then tried to use my expertise in equine teaching to work in a riding stables. I fully explained my current health status and was very upfront about my limitations etc. I was there 4 months. Instead of using my knowledge to teach clients, take rides and train new staff whilst allowing me to concentrate on lighter duties, they decided to set me up to fail. I was expected to bring in six horses at a time from more than a mile away, groom them, tack up and then lead out on foot up to 7 hour rides a day, plus mucking out between 6 and 8 stables, clearing out the standing stalls and feeding, watering and carrying heavy hay nets. I never once gave a lesson or used my experience formally. I was told after 4 months that they didn’t have enough work to continue my employment, whilst interviewing 16yr olds for full time posts. I haven’t worked since the end of October.
Sorry for the long explanation but my problem now is that I am effectively trapped by the current benefits system. 
Due to my continuing health problems I am only able to cope with working part time and therein lies the problem. I am currently receiving ESA, housing benefit and council tax support but if I try to get part time work I lose these benefits but you are no longer entitled to Working Tax credits for working between 16 and 30 hours so if you can only work part time you are financially crippled. I would have loved Chris to discuss whether he thinks that there are ways for people still struggling with ill health to get help to return to work part time. I’m aware that this probably means changes at Governmental levels, but shouldn’t that be what people fight for? I don’t want to be stuck on benefits, but I have to be realistic about what work I can now cope with. Also I desperately want to train and qualify as a Classical Equitation Teacher but I just don’t have the funds to do so, as this would enable me to work at my own pace doing a job I love, helping others to enjoy their lives to the full.
Sorry this has been a long and quite whinging email, but I feel very trapped, cancer wasn’t supposed to completely control my life, but it does at the moment.”
Working after cancer is a massive issue for us, and is something that we as a society must start dealing with now, as the realities are that the numbers are increasing. We must look at new and innovative ways, not continuing our age old ways of recruiting, and working harder to help people who have these issues. We all want to contribute and should not be sidelined by a system that seems to only be interested in people with perfect health.
It would be great if you could share your own experiences of working after cancer, to help us understand the full extent of this problem.
As you know Chris, I wanted my work to benefit from my experience and I am glad to say I have gone from retail to fundraising -it has been a privilege! However the CV had a big hole in the middle, illness and kids, and I am only now climbing back up the ladder again 11 years after diagnosis! My advice is never give up -oh an lobby for better flexible working contracts, there are too many full time only opportunities!! X
Thx so much for sharing that Ailsa! I have a meeting on Tues with policy makers who want me to talk about the realities of this issue, where many of us have large gaps on our CV, and lots has changed for us. As I go round the country, I am hearing so many poor experiences, and as we both know the system must be much more understanding. xx
This is such an important issue that affects so many, if not all of us diagnosed with cancer. Thank you for raising it and bringing it to the forefront of discussion.
Thx Hannah! As I do my work it is almost the no1 subject that people want to talk about. I don’t really see any specific help for people trying to get back to work. The law protects slightly those in work, but trying to find work after a long spell of treatment etc is very tough. There is still a long way to go!!
Great insights as always Chris’s Cancer Community on a very important topic. Thank you, sharing. Hope things are going great with you and your xx
Hi Yvonne, and thanks so much for sharing this post in your own community. As you know this is such a vast issue for many of us, and I see little work being done to offer specific help. We need to re-educate employers too, to engage with the cancer community and offer flexible opportunities. We’re doing great Yvonne thank you, and big love to you and yours xx
Another great blog Chris, on a very important issue. Sadly the current benefit system means that many cancer patients are struggling either to cope financially after loosing their job or having to reduce their hours or are being forced to take jobs that they are unable to deal with physically. Although cancer patients are technically covered by The Disabilty Act and employers are supposed to make “reasonable adjustments” it is often the case that many employers disregard the legislation, and as many employees are often unaware of the legislation they are expected to continue to work as before. I’ve heard of cancer patients being sacked for taking too much time off work for appointments and others loosing vital benefits becasue they were deemed “fit to work” – even when they were undergoing gruelling treatment.
Hi Kaz, apologies for the delay. As I know, you are also aware of the realities of work and cancer. We all know what the law says, but what is actually happening is a whole different story. I have just focused on giving personal support to a couple of people, and their situations are looking more hopeful. We need some specialist help in this area! am meeting with some senior policy makers this pm so will understand where we are after that! xx
This is one of my biggest fears for my next round of treatment. The first time management were great and supportive. Second time was more reluctant and direct discrimination came into play. This time I know that as soon as I start the bulk of my treatment and am unable to work I will lose my job and probably my career. I’ve done everything I can to protect myself but it’s a distressing thought. And this time inevitable.
This is a shocking example of what is happening in the workplace Dee, and must be an awful psychological burden for you. Firstly I would like to thank you for sharing it, because it is such valuable evidence of things currently. But more importantly, is there anything I can help with at all?
Please feel free to private message me or drop an email on the contact us
Thank you, Chris, I am touched by your kind words of support. It is difficult and sad but my focus needs to be on getting myself successfully through this next bout of treatment and to the point where working again might be an option. Upsetting as it is there is no point in putting energy in fretting about it now. Take it as it comes.
My own thought process was exactly that, during my stuff. Take one step at a time. Good luck with the treatment Dee, and that was an open offer. Keep in touch
The post provides a real platform for people to share experiences and to help see the extent of problem X
Thx so much Sally!
Excellent blog, Chris, sadly so many stories like this
There are so many Sam, which is the reason I wanted to open this discussion up! The comments attached to this post are clear evidence of what is happening in our society today.
I had to shut down my non profit and have had a couple part time jobs since then just to keep me sane.I had to jump through hoops once trying to land a sub job at a school district even though NED. It was ridiculous
Unfortunately this seems to be the reality Lesley, and until people like you share their experiences nothing much will change. Thank you for sharing yours, Chris
Took me two years and more than 40 interviews to get a job offer after finishing chemo
Unless we had experienced that Freya, I don’t think either of us would believe this is happening. I’m so pleased you managed to find a suitable role eventually, and thanks for sharing your experience.xx
An issue that our Older People’s Cancer Voices raise, negotiating with employer and finding new work #advocacyworks
I was laid off from a full-time job I had for almost 8 years (almost 3 yrs ago). It’s devastating.I changed careers completely. I’m now a part-time certified mastectomy fitter. Low pay but highly rewarding, drained by the end of the day. Side effects from chemo are horrible.