My last couple of posts have created a lot of discussion, particularly around the inequalities of cancer support. But today I would also like to add another area where there are real inequalities and that is the workplace! Personally I really understand the importance of work to us all, and it is possibly the thing that I miss most since my diagnosis. Like most things in life, you rarely appreciate what you have at the time. I was always overtaken with work and longed for the day I had time to myself. How ironic though. Then I had health and no time, now I have time and no health! I guess it goes to show that in life we rarely have everything at the time we need it.
I have to admit to feeling bitter about my early career demise, and having my choices of when to retire, taken from me, (whilst still being grateful for my life!) Not just financially, which was a massive blow, but mentally too. Being self employed was always a slightly risky strategy, but long term was the only answer for someone with such maverick tendencies. Those of you that know me will know that I am not really a corporate kind of guy. So immediately I was diagnosed with cancer, my ability to work lessened quickly, and very soon the money tap turned off. No sick pay, no golden pension scheme, just crumbs from the benefits table. I used to spend more on dinner, than I was being given to last a week!
My original estimate for a return to work, was a year. I couldn’t even comprehend that amount of time, but there was no choice. I would just have to try and pick up where I left off somehow. But here we are 7 years on and still having treatment! There was a time a few years ago, that I thought I might be able to do a part time role. So I started applying for some very basic jobs. My work had gone from travelling round the world helping multi million pound businesses, to looking for local office jobs. But now I had two things against me. The gap on my CV due to poor health and the fact that I was closer to sixty than fifty. I didn’t even get an interview! I did have an interview at a job agency once, and it was explained that I had to tick the box about disability, as I had cancer. This apparently was to stop discrimination. I felt immediately discriminated against!
Yesterday, I had a private conversation with the chairman of a major UK employer, about the difficulty people with cancer face, trying to either get a job, or stay in one. He said he would employ me tomorrow, but I explained my CV would never get through the recruitment system, to even get to interview stage. I explained that in my experience, at least sixty per cent of people I know, fail to return to the same job they had before their cancer. Mostly this situation was instigated by the employer, but also some by the patients themselves.
We all understand now that cancer is life changing, and some people decide that work wasn’t the priority they once thought it was. That is fair enough, but there is a whole discussion around the benefits of work for us. Not only does it provide the income that we all need, but it gives us a major sense of purpose, and in many cases wellbeing. If we do well at work, we earn more money, and gain in confidence, which in theory should also benefit those around us. However, the reverse is also true, and can send people into a very difficult downward spiral.
The inability to work was one of the main reasons why I lost my confidence and self belief. In the working world I had a place, and respect. I was always in demand, and earned a good living. I could provide for my family, and fulfil what I saw as the ‘male role.’ The longer things continued without work, the worse I felt, and when it became quickly obvious that society wasn’t interested in accepting me back for paid work that feeling got worse. How could I be washed up at fifty one?
The commercial world is a very harsh one. Not only is it very difficult if your health starts to struggle, but also as you get older. We talk that employers should be more sympathetic to people affected by cancer, but there is also an issue with our colleagues. Of course everyone has sympathy, but quickly that wears off when you need continual time off for hospital visits etc, and they have to pick up the slack.
We all know what the law says but in reality, who is going to employ someone knowing they have a chronic long term health condition? Of course they can’t tell you that is the reason you don’t get the job. As a society, we need to start looking at these issues, as more people are living WITH cancer and treatment side effects. Volunteering of course is a wonderful place to start, but cannot fill the economic void, of paid employment.
I do know people that have been able to continue where they were before diagnosis, but many decide to have an entire change of career, and do something more personally fulfilling. It is as if cancer has been a wake up call.
How have you found the work place after your diagnosis? Are you one of the fortunate ones? What do you think about cancer and the workplace? I would love to hear your views, which can help shape my work.
Hi Chris, I only ever held one, very short-term, self-employed post years back and it really wasn’t me! My daughter is self-employed and even though I’ve had cancer I don’t think I’ve ever really considered what might happen to her financially if she were to become seriously ill. I’ve been with my current employer for quite a few years now and I received exemplary treatment when I was ill and beyond / since. I was off work for five months and went back on a phased return. I needed the normality of going to work, it was so important to me psychologically to prove to myself that I could go back, do what I love doing and be me. I underestimated the sheer impact, the fatigue, that would hit me when I did go back, it was unbelievable. I’ve heard so many stories since then of bad employers that I realise how incredibly lucky I’ve been – and still am – and sometimes I worry about saying that in case I jinx myself! Macmillan are very good, I think, at giving advice and support to those who need it where employment is concerned but I’m not sure whether legislation covering cancer patients has teeth, so to speak, as I’ve never had to fight my employer. November this year will be four years back for me and I’m probably my harshest critic as I lost a few brain cells along the way, I think, but I’m probably as close to back to ‘normality’ as I’m ever likely to be now and I’m doing OK. It’s wrong that so many get written off after cancer, although I also understand the priority shift of those patients who choose to change their life by leaving a job they previously thought was so important to them. I had never considered the position you’re in simply because I’m not self-employed. Hopefully this isn’t too much of a ramble and makes at least some sense! Deb
Firstly I’m really happy to share a positive story about employment. It’s why I try and open up important discussions on here, to get some honest feedback from people. I haven’t heard many in honesty, so great to know that good things are happening.
I always chose to be self employed, aware of the risks, which I totally understood. It is not only that which stops we getting a job, it’s my poor health in general. I think the situation would have been similar if I was employed, however may have had a bit more of a safety net re pension, sick pay etc.
Sharing this sort of experience is invaluable, for others to learn from. Many thanks for that Deb
This post really hit home. With a chronic non-Hodgkins lymphoma and 57 years old, I am essentially unemployable. So rather than fight the system, I’m creating my own opportunities by channeling my energies into the Anti-Cancer Club.
The Club is a social entrepreneurship model, meaning that at some point, we will generate revenue (some income would be very helpful!). But building a following, creating weekly information and now raising money for our first round of outside equity is not easy. It’s the equivalent of two full time jobs (good thing I’m not employable!) and I love every minute of it.
There are so many needs in the cancer market it is beyond comprehension, and so many people fall through the cracks. I so appreciate your blog. You tackle issues head on and generate discussion which is greatly needed. I am so sorry you have cancer, but please know that your efforts are having a real impacts on people’s lives. All my thanks!
Hi Pat, I’m four years through a five year monitoring period and showing no clinical evidence of disease; I keep my fingers crossed to remain that way. What you’ve said here about now making your own opportunities and doing something you love doing makes so much sense to me. I hope Anti-Cancer Club raises revenue and proves to be a very successful model! Deb
As you are aware, we have many similarities in our stories. What you have done is an incredible thing for the cancer community. Most of the meaningful support I see around has been instigated by people like you and I, who also see the many cracks we see.
I see numerous health organisation blogs that are bland, and don’t really talk in real terms about the difficult issues of cancer. I try to do that, as I see the effects on myself and my fellow patients, and there is no point in writing unless I am honest about things.
My thanks to you for sharing your experience, and providing support through your community. Your support for mine is much appreciated too. We both appreciate that working together is only way to make progress. Chris
Thank you Chris, for highlighting the issues people can face when trying to return or stay in work after a cancer diagnosis. We know there is still a lot to change.
We’ve produced advice specifically to help self-employed people which can be seen here: http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Workandcancer/Selfemployment/Selfemployment.aspx
Thanks also Deb, for the mention of our work. There’s lots coming up in the next few months with a new Macmillan at Work programme and training for employers plus work to raise awareness of people’s rights in the workplace. Follow us on twitter for more information @workandcancer
Hi Laura, thanks for dropping by, and am pleased you enjoyed this piece. There is an awful lot of work to do, and we all appreciate the progress that Macmillan are making.
My challenge to you is to ensure that your work goes beyond just ‘scratching the surface.’ Today, there are massive issues faced by people affected by cancer, either finding work after treatment, or staying in the job they previously had.
We know what the law says but reality is quite different. Particularly away from the public sector. Thanks so much for leaving this information for the readers. If I can help with anything in the future, please don’t hesitate to contact me. Chris
Macmillan is an excellent source of information and support, regardless of where you may live. I’ve passed this along on our Facebook page. Thank you for posting it!
Thx for your contribution too Pat. Always happy to share useful content.
Chris and Deb,
Thank you both!
I was lucky enough to be working for the NHS when I was diagnosed with Mantle cell Lymphoma and so needed a good year off, for treatment and recovery time. Lucky as I was still paid my full wage for 6 months and then half pay for a further 6 months.
Unfortunately as I tried to return to work I developed some complications from the chemotherapy, which affected my mobility and was told by one Dr that I would need a Hip replacement, but a 2nd Dr I consulted was able to reassure me that was not necessary and my hip would mend itself, but my mobility would still be restricted for up-to 6 months, and I would not be able to work.
At this point I was told by Human Resources that they could not keep my job open, and I would have to either take Early Retirement or a Career Break with no guarantee that I would return to my post.
I was devastated as I had worked in that post for 10 years and worked in a great team who had supported me through the previous year.
Luckily I got my Union involved and we were able to delay this decision and another piece of luck came along with a staffing shortage of the senior managers in the department and I was asked to take on some of the office work to assist the remaining manager.
This I was able to do for the next three months, working part-time hours using my annual leave to make up my pay, until I was fit enough to return to my original job which because of staff turnover had become vacant.
So I have now been back at my post for 2 & 1/2 years and loving it and hoping that the dreaded cancer does not come back any time soon.
It has been a stressful time and still is to a certain extent as I still have a mortgage to pay.
Yes I was one of the fortunate ones as my health eventually, and a lot of luck, enabled me to keep my job. But with no thanks to my employers, albeit the NHS, who did not consider the fact that I have Cancer, basically if you can’t do the job you are out.
So lovely to hear from you, and thanks for sharing your work experience. Firstly, well done for getting back to work, that must have taken some incredible mental and physical strength.
Your story beyond that point is quite shocking, but I am very much aware of what is happening. I am a little surprised that even the N.H.S is now joining with everyone else in that regard.
I’m so pleased that situations went for you, and you managed to get back to your original job! Work is so important to us all,and I appreciate that in this day and age no one can afford to carry ‘passengers.’ But there are now more of us living with and beyond cancer, so we must certainly revisit this issue urgently.
This experience is so valuable for others to read. Thanks again for sharing, and I hope things continue to go positively for you, Chris
Hi Chris, love your blog and this one certainly hit a nerve. I am one of the lucky ones as you say who returned to my high powered job after cancer but I am finding the adjustment very difficult. The stress is enormous and I worry damaging to my health and after the initial support, memories are short and I dont think my boss has a clue how much pressure he puts me under. I worry about being kicked out and left without income or health insurance. Especially as I said i didnt want to go further up the career ladder as I had enough stress already. There are days when I flirt with the idea of leaving but am upset I have to consider this. Meanwhile I carry on and wonder if I am doing the right thing. I am 48 and like you think age and cancer is against me, despite my experience! I wish you well and thanks for starting the debate. Rachel
Hi Rachel, thanks for your comments. I love yours too, and well done with the book! Yes, the old chestnut of work. I see so many people affected by this issue, probably like you do too. Those lucky enough to work for an understanding employer, are fewer and fewer. I keep reading about regulations in the work place but what I see in reality is nothing like that.
My view is that work is a fantastic focus for us, particularly in our situation, but it is quite difficult to return to work as the same person, either physically or mentally. Only people who have been though that experience can really understand. Not some random person in HR!
Your position represents another angle of this issue. It is a very difficult balancing act, and when you put finances into the mix it becomes more awkward. This is something that only we can decide, what is right for us, with all our individual factors taken into account.
I’m sure you will make the decision that is right for you, and thank you so much for sharing your unique experience. By opening up debates on these subjects, I can get an idea how other people feel. Good luck Rachel and please keep me updated, Chris
Hi Chris, well…..I work in Human Resources in the Education Sector. My 11 year old son was diagnosed with AML and he underwent 3 failed chemo blocks and eventually a double cord stem cell transplant successfully. I try not to think about the future too much and concentrate on the ‘day to day’. Work initially were awful and somehow thought it would benefit my own well being to stay on and continue working until I fell apart when GOSH told us there was nothing further they could do for him. Luckily I tuped into the Council from a private sector employer which left me in the position to take sick leave for 6mths fully paid and 6mths half…..I’m currently on month 7 and can’t see how I can return to work in my former capacity without compromising my need to care for my son and other children’s needs as my wife had to return to work (peads nurse) when her full pay ended so we could afford to stay in our rented house and pay the mounting bills…..we had one cheque for £250 travelling expenses in 6 mths of inpatient treatment at GOSH and I spent this in the first 4 weeks……I dread to think what I will do when the money runs out and I have to return to work in a couple of months as my son is nowhere ready to be left alone and return to school……
Hi Pete. Firstly I am so sorry to hear the news about your son. I can’t begin to imagine what you and your family are going through now. Your story is a very shocking example of the situations facing many people affected by cancer, which is why I wanted to put this subject out there, as it is rarely dealt with effectively by any organisations.
My work puts me in contact with many people, who may be able to help you, with certain aspects of your situation. Please leave me a comment if you would like me to contact you, as I have your email.
Thank you for sharing your incredibly powerful story, for the benefit of others. Chris
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