Last week I asked the question “What is ‘living well’ after cancer? and I got many responses from people who were obviously finding it extremely hard to do just that, after a cancer diagnosis. One of the biggest reasons we struggle, is the financial impact that cancer can have on our lives. This has had a massive effect in my own life, but I am contacted almost daily with people having problems either maintaining their current work, or finding employment of any description that fits their new needs.
It is not just the financial element of work that it is important, but the feeling of self worth, that comes with regular employment, being part of a team, and contributing to something. But think of this situation logically for a moment, dealing with a life threatening disease is tough enough, and imagine that your financial security is also under threat as you get diagnosed. What will you concentrate on, your own health or paying the bills?
I cannot emphasise enough the importance of being welcomed back to some form of normality after treatment. As a person affected by cancer you will have already lost many things you took for granted, but if you are unable to get back to some form of regular routine, it can be devastating. But I am seeing that happening more frequently now, as the work place becomes a very unforgiving place. No room for anyone who is perceived as not being able to pull their weight. Employers seeing people with unreliable health as easy ‘prey’ for cut backs.
We are not looking for sympathy because of what has happened to us, but some form of support and understanding. Cancer affects everyone, whether directly or indirectly, we are all touched by it, so I struggle to understand how society seems to discriminate against us in so many ways. It is difficult to find the things we need to help us, beyond the basics. Everything is made extremely onerous to access and the organisations there to supposedly help us, seem unable to provide what is required.
Below you will find a comment left by Sean, on last weeks post. I was so moved by that and others with similar messages, I felt I needed to highlight the reality of many people affected by cancer. Of course there are people that don’t have these issues, but they are very much in the minority. Many are not only living with the effects of cancer and it’s treatments but are beginning to feel a disconnect with parts of society that seem to be turning it’s back when we need it most.
Hi Chris, reading your blog felt like I was reading my own story. I’ve ran businesses, worked for some high profile multinationals and even managed some freelance consultancy for the European Commission. But I’ve been in-treatment since 2011, and like you have been at the brink of death a couple of times.
I’ve been cancer-free for a couple of years now, but of course each time I have a blood test, I can’t help thinking the unthinkable.
I was cured but I have to now live with the consequences: a clot that will never go away (I had six surgical procedures) , and necrosis caused by my chemo. I was treated for testicular cancer, but as an older man (51 at diagnosis) , I really suffered during the chemo .
In my previous life I ran marathons around the world, but now I am waiting for my second hip replacement. I had my first in July of this year. The necrosis destroyed the femoral head of both my legs. It’s the steroid element of the chemo that’s problem – cuts off the blood supply to the bone and it dies. I walk with a stick and need a wheelchair for longer journeys.
I was treated abysmally by the DWP and more recently by my Local Authority, who asserted I was mobile when in fact I was hospitalized and immobile for most of the summer (my left hip collapsed in May). I was on 90mg of Morphine following the collapse, and still take heavy pain killers daily. I’m trying to avoid Morphine as it turned me into a vegetable.
Throughout all of this I have been cared for by my partner and I’m currently staying in her flat because my place is inaccessible (due to lots of stairs and inadequate heating – that’s another story). No help has been forthcoming (except from Macmillan who have provided therapy and a small grant during my chemo). I was too sick to apply for DLA, and naturally a recent application for PIP has been added to the 600,000 or so outstanding claims.
Of course I have been made to feel like a scrounger – even though I paid tax and national insurance for 30 years, and was paid pretty well. The economic impact of cancer is one thing that is rarely touched on, in the mainstream media or in drama.
I have experienced hostility from people on the street and on public transport. I walk strangely, I have a stick. I am vulnerable so not likely to fight back. I have osteoporosis (another chemo side effect) along with the necrosis , so if I were to be knocked or hit, my bones would snap. I avoid the rush hour naturally.
What the future holds, I do not know. But I can’t see anyone wanting to hire a 55 year old with multiple health issues, anytime soon. If I had the energy and the health I would start an organization that actually employs people like me: highly skilled individuals, who are unable to commute or do the usual 9-5 . The technology exists, but I don’t think the funding would be forthcoming !
Thanks for your blog, its nice to know I’m not alone.
I would like to thank Sean for sharing his very personal experience with us, and as always I would love to hear what your view and experience is, and please feel free to share it below.
Sorry Chris, I wish I could contribute a positive story, I had to fight for nearly a year to not be made to work in the evenings as well as (and between) days, finally had to accept pay cut. My union werent much help. Maybe there’s a way to get decent legal advice, advocacy, peer support etc for people going back to work, as I think employers are counting on people not taking the big risk of taking them to tribunal with an uncertain outcome and all the stress and time that would take. Myself, I was just too tired and had to ask myself how costly that would be to my health, not a good situation though, certainly not in line with making every day as good as possible, take care
Thx for sharing your story Clare. I always attempt to provide a balanced view of things, but my own experience shows me time after time that reality is very different to the picture that many organisations try to paint.
I see very few people that have a positive work experience after cancer. Most like you, do not have the strength or inclination to take on another fight, once their own health becomes the priority. There are many people out there saying the right things but this is not translating into positive action in the workplace. This is a very understated problem, and we need to be doing much more!
Thanks Chris,
I’ve been thinking about what may be helpful, and wondering if there’s a way to get some peer support going for people with cancer diagnosis at work, for example some training so we could accompany each other to meetings with employers. I think they sometimes play a blinking game, guessing the person with cancer will think of their health, family and friends, and blink first.
A well informed supporter might make employers feel they will be held to account. I’d certainly be willing to attend training. Unions should support people but in reality often don’t, CAB are overstretched, there is not much legal advice around for people whose finances are already affected by cancer, so maybe this is something we could all do for each other maybe with one of the charities facilitating training, anyway thank you again for talking about this issue, take care
It is a subject that is very close to my heart Clare. I believe that it is a much bigger issue than we hear, as many people do not feel comfortable telling their story publicly. I know many people affected by cancer but very small percentage have positive stories to tell re work. I am already in communication with Macmillan Work And Cancer Dept. Will let you know my progress, and thx for ur support on this, Chris
Chris there is a positive thread to my story. A year after my brain tumour surgery I returned to work on a phased return programme which was signed off by my GP and I. I had a huge amount of support from my manager, employers and occupational health (I worked in the NHS in a national role). The Occupational health consultant thought I was mad to be putting myself through what I did, but they supported me all the same. I had to try or would have regretted it for the rest of my life.
My journey to the office as I could no longer drive was by 2 Taxis and train & took up to 2 hrs each way so I worked quite a bit from home. I had financial support for the travel from Access to Work which was fantastic. But as I couldn’t drive, walk well or concentrate for long I couldn’t do the job I was employed to do and my self esteem plummeted over the 10 months I tried to work and I had no energy left to enjoy life beyond work. I was only doing two half days at the office and half a day at home when The job I had was actually full time.
So I had to make the decision to listen to Occupational Health and concentrate on living rather than using what little energy I had for work. My manager was desperately trying to find work I could do from home but that would not have worked for much longer as my Job was all about networking and supporting others around the country. I am in a lucky position that I got an NHS Ill health pension as I had 30 years of uninterrupted service behind me. But getting that pension was a protracted process and the RCN were brilliant.
I would much rather my life had not been affected in this way but could not fault my employers in the support they gave me on all sorts of levels.
Thx so much for sharing your experience Dawn, it sounds like you had some wonderful support, which is great to hear, it is a really positive case!
Thank you for sharing this Chris and to hear the heart breaking story of Sean. So much more needs to be done in truth.So much lack of understanding in work places, public, government and NHS. Sending best wishes always
Thanks also for sharing this post Elaine. It is a big issue for many which is why I wanted to bring it out into the open, and create some discussion.I will be doing more on this subject in the coming months, Chris
Again anther article that resonates so much for me Chris, as I’ve not been able to work due to various complications years after being in remission. And if by any miracle my health and energy levels went back to what they were, I feel that I have forgotten the professional skills I have gained over the years and lost confidence to try and rebuild them (and that’s even if potential employers didn’t mind about the 7 year gap in my cv, which of course they would)
Thx for your comments Pavlos. Your example is similar to my own, and there are so many that I see now. This as a major problem for society because as you know the numbers are increasing. We need to look at the support that is required to help people find their place back in society.
My feeling is if that is done properly, a lot of the burden will be removed from current services and we will find a greater sense of purpose which will benefit our health and enable us to contribute to the level that we want. My best to you my friend, Chris
Thanks again for an insightful article. I’m appalled at what I’ve learnt about other employers from people I know in my local support group. And very sad to read some of the some of the above stories. After four years struggling on with a sales role, with loads of travel experiencing heart problems after chemo, not being able to run for planes, being told by medics I should and would feel better than I do, so stuggling on and on, and limping along between the checks and scans, we have decided to take a view, and my ‘valued direction’ has changed from a nice standard of living and treats to being alive and keeping as healthy as possible. Many don’t have any choice but to be thrown into losing their jobs so I realise that I’m luckyish. My employer (for 21 years) has been v understanding over the years, but that’s more about people than policy and I’ve tried my best to be the reliable, driven character I always was. They had to feel their way with this one as I was the first with cancer. So I worked more than was sensible in chemo to try to be the best patient (I didn’t know any different and was so scared we would lose our house), and worked and worked until I ground to a halt. I didn’t really take sick leave until years after. We are in a recession where my employer needs me to be better, working longer, harder, and totally driven than I can possibly be. They haven’t said it, I just know. I also feel like a round peg in a square hole. I have therefore decided to change course and resign. It’s a long notice period, so I have a chance to have a good ending. But I’m only 45. This wasn’t the plan. The plan for us all has changed from conquering the planet to staying on the planet. We don’t know what is round the corner so to know that people are struggling on without benefits scares me. I wish everyone the best. Xxx
Yours is an incredible story and thank you so much for sharing. I really like to encourage people to share their experience here, even though it might take a little time. We can all learn from each other, and I can also understand what others are experiencing too. I work hard with NHS and cancer charities to improve things and it is always helpful to use other people’s experiences to add to my own, to create a bigger picture.
I understand fully your perspective as I had similar views to you, although self employed. I worked through chemo too, but was unable to when I had my transplant. Once out of hospital I wanted to continue to change the world, but reality took over, and am just grateful to be alive. With no sick pay or pension scheme available life was tough.
My journey has been seven years and I am grateful to be alive. The things I thought made me happy I now live without, and have very different values. It was tough, but I had no choice, the treatment and disease has taken a lot from me.
Now I do what I can in the cancer support world and my time is full. I get a lot of satisfaction but little cash! It is certainly tough, but there are other ways of getting by, you just have to think differently.
Please keep in touch and let me know how things progress for you. Seasons greetings to you and your family, Chris xx
This is a really interesting read. Thank you for posting it. I had been in my job 10 years & when I went to return to my job after 6 months being on long sick I met many more unexpected obstacles. The long and short of fighting a further 5 months to try to return to my job we opted for redundancy with compensation. I was & am very upset & shocked that any company & human can do this to an employee in 2014 following a cancer diagnoses with a successful treatment & now back to good health. It’s put me in a very hard situation with new jobs. Can I manage full or part time I won’t know till I start. My new employers have no idea what I’ve only just come through. So may not have a huge support network.
What if I can’t manage the fatigue & have to reduce hours or even quit. But I’m trying out a full time new job starting soon. I’m determined to find a positive in the situation. All this on top of the usual scanxiety’s & follow ups.
Hi Kathryn, so glad you enjoyed the piece, and thanks so much for sharing your experience.The picture painted by you and others is very much the one I have experienced personally and continue to see worsening in my opinion.
Naturally there are a few positive stories, but they are not the norm. I can only but admire your incredible determination to make something positive from this situation. I am currently in discussion with Macmillan Cancer, and their team that deals with work issues. But if I am honest, there is a really long way to go regarding cancer and the workplace.
I hear from many employers who talk about how support is improving, but I see very little evidence. For people struggling to find work again after cancer, the reality is a lot harsher. Please keep in contact and let me know how things progress for you. Seasons greetings to you and your family, Chris