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Taking cancer on through

Managing Work

Expert advice on how to manage work, return to work or find work after a cancer diagnosis as a patient or carer.

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Coping with work after recurrence or with advanced cancer 

Introduction

You are likely to experience a rollercoaster of emotions and uncertainty about the future if you have received the news that your cancer has returned in the same or a different place (also known as recurrence) or that the cancer has spread beyond the site of origin, meaning that it may be treatable but it cannot be cured (also known as advanced, secondary or metastatic cancer).

When you are working, you will have some experience of how to manage your employment situation from when you were first diagnosed. However, you are finding yourself in a new and emotionally difficult situation that raises old or new questions: how the treatment might impact your ability to work, your rights to take time off from work a second time, how and what to tell your employer and colleagues, how to identify the support you need from your employer, and how to ensure that you and your family are financially secure.

Getting the right support as an employee

The need for flexibility, depending on the pattern of treatment

Improved treatments and new drugs can help manage and control the recurring or advanced cancer and lessen the impact of side effects, offering a good quality of life for a number of years. But it is also important to acknowledge that the course of the treatment and of the disease itself can be unpredictable. Therefore, the impact on your physical and mental health cannot be fully anticipated.

There is a range of treatments for recurring or advanced cancer, including surgery, radiotherapy, chemotherapy, hormone therapies, immunotherapy, targeted therapies such as antibody infusions, clinical trials and other drugs. Your treatment plan will be based on the type of cancer and how much it has spread, and will be adjusted by your oncologist as needed throughout your cancer journey. This might mean that your treatment plan needs to be changed if, for example, the treatment does not show the desired effect or if the side effects become too burdensome. You may have long periods where the disease is stable followed by periods of progression.

It is entirely your choice if you want to continue working. Many people can work successfully for many years after diagnosis. However, people living with cancer often face ignorance or prejudice at work, as their employers may assume they will no longer be able to do their job and will need to give up working. For you, work may offer a welcome distraction from uncertainty over the future, providing you with a sense of normality and purpose and keeping negative thoughts at bay. Although the diagnosis is life-changing, you are still the person that you were, and you possess the attributes needed to be a valued part of any workforce. If you want to, you can continue to develop your skills and achieve great things.

Given all of the above, there is a real need to be adaptable and flexible. You will have ‘up’ days and sometimes very ‘down’ days, physically and mentally, and acknowledging this can help. It’s important to establish good coping mechanisms and to prioritise your resilience and wellbeing through things like exercise [link to physical activity section], meditation [link to mental health section; link to yoga videos] and a balanced diet [link to nutrition section].

Continuing to work after a secondary diagnosis

Continuing to work after a secondary diagnosis

Requesting adjustments at work

As with treatment for primary cancer, you may experience a range of both physical and emotional side effects as your medication is varied or increased [Link to WwC section 3.2]. These can include fatigue, joint or bone pain, hair loss, hot flushes and sweats, increased levels of anxiety and fears, cognitive problems (such as poor concentration, memory loss and impaired decision-making), loss of confidence, depression and poor mental health. Check with your employer to see if you can access any mental health support or counselling if you think this could help you.

Asking your employer for flexible workplace adjustments as you might have done after your initial diagnosis [link to section 3.2] will help you do your job and manage some of the side effects of treatment. Adjustments can include: 

  • Reducing your duties/responsibilities and changing your performance objectives, permanently or temporarily

  • Reducing the onerous aspects of your work (for example, by working from home) or changing your role, permanently or temporarily

  • Reducing your hours or having more flexible hours of work

  • Having extra breaks during the day to recover your energy levels

  • Having time off to attend medical appointments

  • Undertaking a job share to take the pressure off you

  • Being given extra time and patience and given simpler tasks to cope with ‘chemo brain’

  • Making physical changes to your desk, chair or computer software

  • Having extra equipment, such as a fan if you suffer hot flushes

  • Time-off for any additional therapies (e.g., counselling, yoga, mindfulness, massage, acupuncture), or simply for your ‘down’ days

  • Having a parking space at work so you can drive rather than using public transport

When considering what adjustments you might need, you should think about the role that you do. How physically or mentally challenging is it? What aspects can you cope with? What adjustments would help you? Have regular (every two weeks if possible) discussions with your manager to review any adjustments you need to make.

You might also want to think about your work-life balance. Although continuing to work has many benefits during on-going treatment, you may want to think about how you could spend more time doing the things you enjoy outside of work. It’s important to choose what feels right for you and not what you think others expect from you.

What to say and do as treatment progresses

Talking to colleagues about your circumstances and then having to deal with their emotions and reactions can be tough. Think about what you need from your manager and colleagues. Unless they know about your cancer, they won’t be able to support you and help you manage changes to your work life. Being upfront will help them understand and prevent them making assumptions. Share what feels comfortable for you personally – you may want to be very open and honest about what is happening, but equally you may not want to say too much and ‘overshare’. Keep reviewing the situation regularly – maybe every few months or more often if your cancer starts to progress.

No longer want or feel able to work?

You may get to a point where you no longer wish to continue working. This might be because it is too tiring, you no longer enjoy working, you want to spend more time with family and friends, or you want to spend the time you have left doing other things such as volunteering or pursuing hobbies. Discuss with your manager or HR how you can leave in a supported way.

Options might include taking early ill-health retirement, accessing your pension or making use of a critical illness policy. There may also be social security benefits you can access. Talking to an independent financial advisor can be very useful at this stage as they will help you to understand your options before you make any final decisions.

When you get to this point, there are also practical decisions to help you ‘close the door’ to work. These might include what and how to tell colleagues or clients and whether you want to stay in touch or not. It’s also worth thinking in advance about how you are going to fill your days when there is no work in the diary to ease the transition.

Work & preparing for the end of life

Introduction

When you receive the devastating news that no further treatment is available or recommended for your cancer, and you are now at a ‘palliative care’ stage, it can be very difficult to acknowledge and come to terms with the idea that it is now time to prepare for the end of life. Everyone will react differently at this stage, but you will want to finish work with dignity and be in control of what happens.

When you are no longer well enough to work

If work has been a major focus of your life for many years, you may find it very difficult to adjust to the idea of not working and it may be helpful to talk to someone about your feelings, whether that’s a family member, friend or someone like a specialist counsellor who is not as close to you [link to mental health section support]. If this is something you are interested in, you may find you have access to independent and confidential counselling through your employer or your country’s health service.

You may also worry about how you and your family are going to be able to cope financially. Ensuring your financial affairs are in order as you approach the end of life can give you a sense of control and the reassurance that your family won’t have the additional burden of having to deal with financial problems afterwards. This may include sorting out your will and powers of attorney (or equivalent if outside the UK), checking your life insurance policies (as many will pay out if you receive a terminal diagnosis) and accessing your pension, which your employer will be able to help with.

Depending on your country of work, your manager or HR will be able to advise on whether you are able to take ill health retirement and draw any pension early. Before you take out your pension or resign, you should also check if you have life insurance cover through work. Many work pension schemes have this, which is a sum of money paid to a person you’ve nominated if you die before withdrawing your pension. When you are too ill to work, you may also be able to claim sick pay and other benefits. It’s best to seek specialist advice if you are unsure what you are entitled to.

Many employers will be helpful and supportive when you have to give up work. However, if you have an unsympathetic employer, it may be that the decision about continuing to work is taken out of your hands and you are dismissed. If you lose your job, in addition to losing your income, you may lose any death-in-service benefits that you have earned. When it comes to having your employment terminated as a result of ill health, legal rights vary from country to country and you should seek legal advice to ensure that you have access to all your financial entitlements.

Thinking about what you want to do with whatever time you have left after you have given up work can also provide a welcome distraction. You might consider:

  • What are the things I love doing and can manage?

  • Who do I want to spend my time with?

  • Who do I want to catch up with while I have time?

  • Putting together a book of memories

  • Fill a jar with notes to your loved ones to support them when they miss you the most

  • If you have children, writing letters to them for their life-milestones, such as their 18th, 21st or 25th birthdays, when they start their first job, when they get married, when they have their first child. Entrust the letters to a family member or friend or an official body

Communicating with your employer

Talking about what will happen as you approach the end of life can be frightening and upsetting for you, your family and friends. Those around you are likely to be shocked by the news and may find it hard to know what to say and even avoid talking about it completely. It’s also hard for those at work, particularly if you’ve worked very closely with colleagues for a number of years. Talking to your manager or colleagues about the next steps is going to be very hard and emotional for everyone, so it’s really helpful to prepare in advance what you want to discuss and how you will say it. Here are some questions you may want to consider:

  1. Would you like to stay in touch with colleagues? If so, who, how and how frequently?

    You may want to consider having one point of contact to keep people updated and to pass on information so you don’t have to keep repeating the same update

    Beyond your immediate colleagues, what would you like others to know in the meantime – those in the wider organisation and possibly clients or those outside the organisation?

    How do you feel about people contacting you?

  2. Do you have any particular wishes about how you would like to be remembered by your work colleagues, e.g., donations to charity, a memorial project or fundraiser?
  3. After your death, who will tell your contact(s) at work and give details of the funeral arrangements? What involvement do you want them to have in your funeral arrangements, if any? Is there anyone you would like to give a eulogy at the service? Share your wishes, however painful, in order to avoid disappointment or misunderstandings later
  4. Do you have any particular messages for colleagues that you would like passed on?

Here are a few suggestions for preparing for these conversations – you can find a full breakdown of how to have difficult conversations in section 3.6 [link to section 3.6]:

Who do you want to talk to and what do you want to say?

  1. Manage expectations about what you want to discuss and that it might be emotional

    Would a preparatory email be helpful? If so, do you need anyone’s help to write it?

    Would you like to have someone with you for support and to explain your wishes if you become too upset to continue the conversation?

  2. What’s the best channel for the conversation? Face-to-face, video call, telephone?
  3. How do you want to ‘record’ this conversation, and who will make a note of the actions?
  4. Make a note of what you want to say and follow up with an email afterwards

When/where?

  1. Choose the right time and setting

  • What time is best for you and for the other person?

  • How much time will you need?

  • Is there somewhere private for your call/meeting?