Q&A about working with and after cancer and long-term illnesses

Joy Reymond and Lesley Howells answered your questions about working with cancer in September 2013. This Q&A was sponsored by Unum.

Joy Reymond is head of rehabilitation services at Unum and Lesley Howells is centre head and consultant clinical psychologist for Maggie's Cancer Care. 

 

Managing work when you are ill

Q. Punkatheart: I have a rare form of lymphoma and it is almost impossible for me to work in a conventional manner because of the unreliability of the illness, great levels of exhaustion and the various treatments I have to undergo. If I did apply for a part-time job, how much would they judge me on my medical history? I am not ready for that step yet, but I am worried that I am never going to be employable.

A. Joy and Lesley: Your concerns are very valid. Many people feel that they may never be employable as a result of their diagnosis. If you feel that you may be judged by future employers, you are protected by the Equality Act.

"The workplace is changing rapidly and there may be unconventional work in your future, which doesn't require a consistent level of energy and participation, and allows you to contribute as and when you can."

If your thoughts are more about your ability to work because of your fatigue, it would be good to speak to your medical team about how to best manage this. Looking at your blood levels, using relaxation techniques and pacing yourself as best you can, all help to manage fatigue levels.

Often people find their confidence is rocked by a cancer experience and it is a good idea to plan how you might return to work and what you might want and be able to do. It's good to do this with someone who can be a clear and objective resource, helping you think it through while also talking through your concerns and fears.

You may be right about conventional work but don't give up! The workplace is changing rapidly and there may be unconventional work in your future, which doesn't require a consistent level of energy and participation, and allows you to contribute as and when you can. This may be worth exploring with a trusted 'other'. They may also be able to help you identify opportunities to contribute outside the conventional workplace, ie on blogs like this. Doing this may help restore your confidence in what you can do.

Q. Trice: I would love to work when I can but my health is unpredictable. I could work for one week of the month probably. How could the benefits system cope with that? I can't even volunteer as I can't commit to anything as I would constantly be letting people down. It sucks.

A. Joy and Lesley: You remind me of so many people I meet through my work. I'm not able to comment on the benefit system BUT I can definitely comment on the trapped feeling that can come when you live with unpredictable health and have a desperate wish not to let people down.

It does suck. Your ability to commit to a regular pattern of work is beyond your control but it doesn't mean you can't contribute and make a meaningful difference full stop! Reading between the lines of your post, you sound like a resilient character. I may be wrong but I suspect you have a determined streak. Many people in your position, quite reasonably, become very down and even depressed. A feeling of pleasure and a sense of accomplishment are the basic daily essentials for keeping our moods buoyant. When you are living with unpredictable health, it can feel like opportunities to achieve a sense of pleasure and accomplishment are gradually disappearing. Many people say that it feels like their world is shrinking.

I would like you to think about the values you use to guide your life. Your illness may have blocked many of the routes by which you have fulfilled your values in the past. Now is the time to consider other routes. It helps if you have someone alongside whom you trust and respect to bounce off ideas eg a partner, friend or therapist.

For example, your values may be: helping those in need and promoting justice/fairness. Your route to fulfilling such values is going to have to be more creative than the norm but it is possible. Also lay to one side the idea of 'letting people down'.

When we are frustrated and feeling trapped, we frequently lock ourselves into unhelpful thought patterns like:

  • All or nothing thinking
  • Predicting the future
  • Taking things personally

Such thought patterns often mean we don't try something new 'just in case' it doesn't work or we disappoint people. Catch yourself when you find yourself thinking in such ways and talk to yourself with compassion. Imagine your best friend is suffering in the way you are: what loving, supportive, encouraging things would you say to her?

 

Helping family members who are ill and working

Q. Lilymaid: I'm concerned about my DS2 who has CML (chronic myelogenous leukaemia) and will be graduating next summer. What implications might that have for him in the job market? Apart from a few weeks in hospital when initially diagnosed, he has led a completely normal student life, is extremely fit and otherwise healthy. I wonder whether he would have to disclose he has leukaemia and whether that would be considered a disability under the law?

A. Joy and Lesley: CML is covered in the Disability Act and therefore comes with the protection that offers. I'm glad to hear that your DS2's CML has been well controlled and that it doesn't seem to have adversely affected his student life. Hopefully, this will continue to be the case and therefore should not have to feature in any application for jobs. Employers generally aren't able to ask questions about health or disability before they offer a job and if he has no reason to see his diagnosis affecting his ability to fulfil the role then he should apply. Good luck.

Q. MrsShrek3: My DH is in remission from DLBCL (non-Hodgkins lymphoma) and has been back at work since April following chemo. He hates it. In the space of 10 months he has had the cancer diagnosis, six months of chemo and both of his parents have died suddenly and unexpectedly.

Unsurprisingly, he is now struggling and his employers are about to make his role redundant. (Employers who incidentally have no sick pay scheme - no contact throughout his chemo and no support whatsoever, no phased return - utter rubbish).

It would be a blessing - hardly in disguise - if he were to take the redundancy and run but he appears to have agreed to stay on for lower pay in the grade below his current one and the same grade as those staff who he currently manages. I can't see this working out for him at all. I think it's going to put him in an even worse place emotionally. Do you have any pointers for me to support or advise him through this?

A. Lesley: When reading your post I was struck by just how much loss you and your husband have had to endure in such a short time. You must be reeling! Such an emotional rollercoaster is not unusual for a couple going through cancer and then trying to rebuild their lives. Though the emotions (eg anger, anxiety, sadness) are a natural consequence of the trauma, they are still really hard work to manage and you have had to cope with such significant bereavements as well.

I can see why you think the redundancy would be a blessing. I know another wife in a similar situation with a similar view. As I suspect you have observed in your husband, when someone has been through such a life-changing experience as cancer, they desperately want to cling to everything they think made them the person they were before the cancer and work is something many cling to the most!

Work is such a huge source of self-worth, it gives us a 'sense of who we are' or identity, it is a source of security, routine and provides a sense of purpose. It is also a means of providing for and protecting the people we love. Although work is a difficult place for your husband to be right now, it may well be providing him some really important positives as well and this may make it worthwhile for him to take the lesser job – at least for the time being.

It doesn't sound like his employers are in the position to assist him in finding the fulfilment his job gave him pre-cancer. It may be that he starts to find purpose in his demoted role but I suspect your husband will, in his own time, begin to realise being with his pre-cancer employers now no longer provides the self-worth and sense of purpose he needs. Try not to get caught up in the crossfire of natural anger and fear that will come with this realisation by being quietly and patiently alongside and plant seeds of different ways of seeing the redundancy, eg as an opportunity rather than yet another loss.

We all have values that guide how we live our lives, eg looking after those I love, being dependable, making a contribution to the world. Cancer often forces us to find new routes to fulfil such values. Your role now is to help him find new routes. Be curious and creative as you make suggestions but also know that he will potentially shun your ideas initially. Nudging is good.

If you are able to visit your local Maggie's Centre or use the Maggie's Online Centre, immediately you will find a team of professionals (eg cancer support specialists, financial advisors and psychologists) who are familiar with helping people in your situation. Also within a Maggie's Centre you will have the opportunity to speak with other couples and wives who know where you are coming from.

I recommend you get a copy of a book, Facing the storm: using CBT, mindfulness and acceptance to build resilience when your world's falling apart by Ray Owen (2011). I wish you well.

Q. lisad123everybodydancenow: My husband has cancer and was diagnosed four years ago. His work are now saying his three monthly appointments HAVE to go down on his sick record as it has to recorded. Is this even legal?

A. Joy and Lesley: Having four doctor's appointments a year on your sickness absence record is not in any way remarkable, as most UK workers take between six and nine days a year anyway. I sensed from your note that there might be more to this story, and that the recording of these doctor's appointments are just the last straw. If that's the case and it is impacting on your husband's pay and employment, then he might value a discussion about the bigger picture with some helpful organisations such as ACAS and CAB.

To answer your specific question, however, there are best practice guides for absence management but each company has significant latitude as to how they manage things such as doctors' appointments.

"Your ability to commit to a regular pattern of work is beyond your control but it doesn't mean you can't contribute and make a meaningful difference."

Here's some information from the Citizen's Advice Bureau: "The law automatically gives you rights to take time off work in certain circumstances. This time off will not always be paid ... Your contract of employment may give you extra rights - check it to see what extra rights you have. If you do not have a written contract of employment, you may still have extra rights which have been verbally agreed with your employer, or which have come about because of the way things are usually done in your workplace...


...Your employer may allow you time off work to visit the doctor or dentist but they are not legally required to do so unless your contract of employment says they are. Your employer can, for example, insist that you make these visits outside work hours, that you take holiday leave or that you make the time up later on. You should check your contract of employment to see what rights you have to take time off for doctors or dental appointments."

I hope this helps and good luck.

This Q&A was sponsored by Unum. For more information about working after cancer, visit Unum.co.uk/workingaftercancer

Last updated: almost 2 years ago