Work, Worth & the winding road to Wellness

Alongside fear, uncertainty and the possibility of a life curtailed cancer brings many other undesirable consequences. These issues receive little media attention and this lack of publicity coupled with poor employer, government and public awareness means the implications for individuals, families and the economy at large remain hidden from view.

I know most about breast cancer so will highlight the issues through a lens I am all too familiar with. In almost all cases people diagnosed with breast cancer will require some form of surgery and surgery inevitably requires time in hospital as well as time to recover. For many cancer patients it is not a stand alone event. Even without complications people with breast cancer may find themselves facing multiple surgeries over a period of years in order to ensure the physical aspects of the disease and its aftermath are fully taken care of. As well as surgery, many patients also require additional treatments such as radiotherapy, chemotherapy, hormone or immunotherapy. These treatments can take months or years and frequently come with side effects, some of which may be permanent. Like surgery, these treatments often require regular trips to hospital for their administration or follow-up which inevitably requires some time away from work.

Cancer is an expensive business because treatments and the time taken to administer them are both are expensive. But this is only part of the story. More of us are developing cancer, more of us are developing it at a younger age and worryingly, that trend looks set to continue. Economic pressures and fragilities make it very unlikely our countries can afford the significant costs involved in providing disability benefit for hundreds of thousands of working age cancer patients who suddenly find themselves out of work. Yet despite legislation, e.g. the Equality Act in the UK or the US ADA, many working age cancer patients still find themselves facing discrimination, exclusion from the workplace and enforced redundancy. There are many good employers in the world but there are also far too many who remain ill-informed and retain outdated policies that fail to adapt to the changing face – and health – of the workforce.

This lack of awareness and inflexibility is short-sighted because it places enormous strain on the economy let alone the hardship it inflicts for individuals and their families. Research highlights that cancer survivors work at least as hard as their colleagues and take less time off for trivial illnesses when compared to other employees. In competitive employment markets where demand for skilled workers is high, finding ways to retain the services of cancer patients is therefore good for business, good for the individual and good for the economy as a whole. Although some cancer charities have attempted to provide relevant employer education and awareness, a straw poll of friends with cancer suggests there is still much to do on this front. It’s time governments and mainstream media joined forces on this issue because most cancer patients don’t want to be consigned to the dole queue or long term disability payments. It is more than an issue of income or economy, it’s also an important factor in an individual’s perception of their personal contribution and self-worth.

In many societies the way we perceive ourselves, our confidence, standing, personal and social usefulness is now intrinsically linked with our work. Our jobs, particularly when we’ve trained for them for many years or worked hard to achieve particular goals, have become part of who we are. We measure our worth not only in terms of the salary we earn but the contribution we make as employees. Cancer patients who are forced to give up work often suffer a huge sense of grief and a damaging loss of self-worth at a time when stability and security are of paramount importance. It is not the case that early stage cancer patients need less demanding jobs because they won’t be able to “keep the pace” after treatment. It is not the case that all stage 4 patients are too unwell to work, or will prefer to “spend their remaining time doing other things.”

The number of patients dealing with depression, PTSD or social anxiety as a result of enforced loss of work is significant and likely to increase as the number of working age cancer patients increases. Once again this presents a drain on local and national resources that extends well beyond the realms of individual suffering so it’s time governments and mainstream media joined forces on this issue too. Unemployment creates all kinds of social, economic and psychological problems so keeping people in work has to be a primary aim. With more lateral thinking, more flexible employer attitudes and the application of some everyday common sense, keeping people in work is rarely impossible in an age where we can connect from anywhere, converse from anywhere and complete most computer-enabled processes from anywhere. Even in more manual jobs it’s possible there are tasks employees can usefully and successfully complete with some creative thought about job design and desired outputs. We need to reach a point where pushing people out of their jobs because they have cancer is a decision of last resort.

Awareness of cancer as a critical and chronic disease has increased quite significantly in recent times but awareness of its wider implications – for individuals, families, employers, society and the economy as a whole – remains shrouded in mystery, myths and misinformation. We all have a role to play in unveiling and addressing these important issues because they aren’t going away. Without action and in a world where cancer is increasingly affecting younger people of working age these issues willcontinue to affect our children and our children’s  children if we fail to act.

 

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11 thoughts on “Work, Worth & the winding road to Wellness

  1. The truth laid bare by you here is scary. I think your writings based on first-hand experience deserves a much larger forum/coverage so that it could enlighten/benefit many people even though there are many books in the market covering the subject.

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    • Thank you Jo. It is scary and a real concern for the generations who follow us, because the rate of cancer is increasing. Who will help/care for people? I know this is already a huge issue in some countries – those who have poor or non-existent social care or are struggling with war. Its seems somewhere along the line we are overlooking whats really important: a healthy population is a productive population and the more we help people have or stay in work, the more likely then can feed and care for themselves as well as contributing to the overall prosperity of their societies. I don’t know what the answer is but I hope things change for the better in my lifetime.

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  2. I think I may have had the easiest ride of all. The day I told my boss of my diagnosis (he was aware I had been having tests) the MD came into the office and took me to one side and said not to worry. Work as much or as little as you can and we will support you all the way. I have been lucky to have full pay throughout my treatment and did indeed work as much as I could. Possibly some days I went in when I really was no use to anyone but the routine helped me immensely. Admittedly now that the surgery has been very successful and I am effectively NED I am better in the eyes of my employers and why am I still playing the sick card. Most of my colleagues understand that I struggle when I am tired with words and multitasking and they leave me alone to get on with my work and my two assistants have been a god send. One of them started just a month before I started active treatment and took so much on. They still ring and ask if I want coffee in the morning!
    I can honestly say my treatment would probably have been way worse if my employer hadn’t been as understanding and forward thinking and I would have probably had to either go bankrupt or had to use and IVA due to the amount of debt I have from an earlier relationship.
    There are good employers out there and I wish there was more immediate help from the government. I have applied for PIP but it takes so long my assessment came when I was waiting for radiotherapy and the best I had felt for six months. Ideally as soon as a diagnosis of cancer is made PIP should be available.
    Good luck to all….

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    • It’s always good to hear there are forward thinking employers who understand and do as much as they can to support people who are dealing with a health crisis. It sounds like others could learn a lot from your MD! It also sounds like your colleagues are very supportive and understanding too. The statistics indicate 1 in 3 of us will get cancer in our lifetimes and it’s not selective so will affect lots of people of working age. As something that will touch so many it ought to be time for a rethink – of things like PIP and better ways to retain people within the workforce. Wishing you good health for the future.

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  3. Thank you for bringing this issue into the light for all to see. I wonder if part of the workplace stigma is an attitude of avoidance; sweeping potential workers “under the rug” so that the rest of the company doesn’t have to be around someone who is struggling just to stay alive.

    All of us—me included—need to educate ourselves on how to interact with cancer patients and be supportive of their situation.

    Thanks for sharing your journey with us,
    Ω

    Liked by 1 person

    • I think that stigma still exists Allan and is definite part of it. None of us wants to be reminded of our own mortality and being with a cancer patient going through chemo makes that very hard to ignore.

      I think we’re sitting on a time bomb because cancer in working age people is increasing and unless we find ways to help them stay in work we’ll all be in trouble. It’s better to have a productive population that contributes positively to GDP. All the evidence suggests people who have or had cancer are extremely productive so we need that mindset shift from employers to think and act differently. The law isn’t doing its job and like other forms of discrimination, dealing with it after the event is far too late because the damage is already done.

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      • A friend of mine died of Prostate cancer last March and one of the things that I learned from him was how focused he was on the present moment. He didn’t get hung up over the future—next week, next month, next year. His focus was on how he felt and what he could do today. Tomorrow would take care of itself. It was quite liberating to be around him and his positive attitude brightened my day.

        Perhaps we need to change attitudes starting from the bottom up. If the mass of working people have a better understanding of the cancer situation and their relationship to it, then pressure can be applied up the line to the policy-makers to effect change.

        Today, in spite of everything, you are the Luckiest Woman Alive. Thanks for sharing your story and changing my mindset.
        Ω

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  4. What you and your readers say is all so true , having cancer whether it is in remission or not is a lonely path , which doesn’t end with treatment in many ways it gets worst in the months which follow treatment. The disappointment of not feeling better when treatment is over . Physical and psychological problems that go on and and on and the expectations of well meaning friends and family who expect you to be better. OK seems to have become my favourite word these days.
    I am not coping, like many ‘cancer’ patients and in desperation to improve the quality of my life when it was suggested by the psychological service at the Marsden that I should perhaps attend a mindfulness course for cancer patients (MCTBA Ca )I decided that I had nothing to loose. despite the fact that it was at the opposite end of the continuum from where I naturally function.
    We are a terrific group of 10, some in remission, some still in treatment and some managing long term active cancer. We are all very supportive of each other and though we don’t often talk of cancer it inevitably come up . The leaders, both have experienced cancer but exude such a wonderful air of peace and tranquillity which I immediatly decided that I would like a piece of. It is a certified course and not a money making spin off as many mindfulness courses are. It is not easy and the home practice is demanding but it is helping and making me appreciate what I have. I would recommend it to anybody who is walking the cancer path to try it ,you can get a place on it if you are recommended by your GP oncologist etc.
    This might tell you more
    https://www.bangor.ac.uk/mindfulness/cognitive_therapy.php.en

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    • I’m glad you found the mindfulness course Liz and have been willing to give it a try. The concept of coping is a difficult one because none of us gets a choice. We are thrown into a maelstrom and no-one can say whether we’ll find a way through it or get take by the currents. There is so much that is unsaid about cancer and its after effects, not just the physical but psychological and financial too. I wish more could be done to shine a light ton these issues – I am not a journalist but there are some very powerful and disturbing stories here that need to be told. This path is incredibly hard so I wish you peace and serenity today and in the days to come.

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  5. Cancer treatment has left me paralysed due to radiation to the pelvis .. Women after BC treatment can find their arms becoming week ue to damage to nerves by the radiation… These and other side effects are happening more and more due to increased. Survival rates. .. How ever there are no clinics dealing with this and you are not supported by the cancer team anymore… You are alone struggling for support and recognition.. Financially it is the last straw…. Many push them selves to continue working … You are told the cancer is gone you are a success story
    Cancer and the quality of peoples lives the financial burden need to be looked at … Changes need to happen .. Your post us very relevant at this time and things will get worse if not addressed … Helen

    Liked by 1 person

    • You’re right Helen, there are so many of us who are no longer supported by the clinic or the state but unable to make ends meet. Its a tragedy of enormous proportions when we do all we can to remain alive then live a life of continual worry, poverty and long term side effects. I am sorry for your ongoing health issues, no one deserves this after tackling cancer. Tracy

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