Working after cancer

Building a career and carving out your path in the world of work is tough, particularly when you’re young. If you’re young AND diagnosed with cancer, work can suddenly get much tougher. Some people work through cancer treatment, finding the routine helpful in maintaining a sense of normality; but this isn’t always possible, especially if the treatment (or the cancer) makes you feel ill, or you develop secondary infections or other conditions.  We’re delighted that Barbara Wilson, founder of Working with Cancer, has written a blog. Barbara has years of experience in human resources but she also has personal experience of working while being treated for breast cancer. Her blog below contains lots of useful tips, including the need for people living with cancer to know their rights.  We hope you find it useful!

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Guest blogger: Barbara Wilson

In the UK over 100,000 people of working age are diagnosed with cancer each year. 30,000 of these are people aged 25 to 49. A diagnosis of cancer is always shattering news but it’s particularly hard for those diagnosed at a young age. This is the period in life when you tend to be focused on building your life, your family and your career; a cancer diagnosis is a bit like a bowling ball tossed at a bunch of skittles – at the very least life, family and work all get knocked sideways.

Fundamentally, most cancer survivors of working age want to return to or remain in work. Work contributes to financial independence, provides a sense of purpose, provides identity and self-esteem, and creates structure and order in our lives.  It is also an important source of friendship and social interaction, and can be a lifeline back to normality, wellbeing and recovery.

However, a survey undertaken in 2012 as part of Shine Cancer Support’s ‘Small c Project’ revealed that nearly 53% of respondents stated they were unable to work in the same way as they did before their cancer diagnosis, with 13% saying they were unable to work at all. 31% reported that they were unable to work full-time as a result of their diagnosis and treatment.

Managing work after cancer can bring up many physical, financial and psychological issues. From a physical perspective, you may be coping with extreme fatigue, a fuzzy head or general discomfort during and following treatment while trying to show you are “still up to the job”. This often means people tend to come back to work too quickly – and clinicians rarely give useful advice about this, often advising people they should return to work ‘when they feel ready’. Moreover, it may be that you are relatively junior within the organisation and have a demanding boss who for whatever reason demonstrates increasingly impatient or bullying behaviour. A difficult boss might ignore a phased return to work plan and ask you to work late.  It can be incredibly difficult to say no under those circumstances.

Financially, many younger people may have taken on large financial responsibilities but, at this stage in their lives, have no financial cushion to support them if their sick pay runs out. Some companies have generous policies and offer full pay throughout treatment but many don’t.  It is worth finding out if you might be eligible for benefits or other forms of financial support (the Macmillan support line can advise you on this – dial 0808 808 00 00).

From a psychological perspective, many people affected by cancer lose confidence in their bodies or live with a constant background fear of the cancer returning. This anxiety, sometimes causing depression, can emerge for people of any age living with a cancer diagnosis, and it does tend to diminish over time, but for younger people, confronting mortality at a stage in life when it was least expected, is particularly hard.  Sometimes Occupational Health departments offer specialist counselling to deal with this anxiety, and some companies are now offering coaching and support services to help individuals come to terms with their cancer.  It’s worth investigating what’s on offer both through work and your hospital (where free counselling services are usually available).  Coaching to support return to work can also be very helpful and more information can be found about this on my website.

A great deal depends on the company’s culture and policy, and line managers have an enormous influence on the quality of support provided. In researching this blog, I spoke to a number of young adults with cancer and I was given examples of managers who had never experienced cancer who nevertheless went to amazing lengths to accommodate an individual.  I also heard other stories where the opposite occurred, with performance management procedures being threatened while an individual was on sick leave. Clearly, line manager education should be a priority.  In any case, it can be useful to research your rights and to make it clear to your manager how you’d like to work in the future.

Finally, please remember two key points:

Firstly, if you have been diagnosed with cancer you are protected legally from discrimination by the Equality Act 2010 and the Disability Discrimination Act 1995. It may not seem to be great news, but everyone with cancer is classed as disabled from the point of diagnosis for the rest of their life, and that means their employer or a prospective employer must not treat them less favourably for any reason relating to their cancer. All areas of employment are covered including recruitment, promotion, performance appraisal, training, pay and benefits.

Legally, employers have a duty to make reasonable adjustments to support a return to work. There is no fixed definition of ‘reasonable’; this will depend on the circumstances but adjustments might include:

• Offering light duties or alternative work on a temporary, reduced hours basis

• Allowing flexible working

• Allowing the individual to work from home for part of the week

• Allowing extra breaks to help cope with fatigue

• Allowing time off to attend medical appointments

Secondly, however tough it is, do keep your boss and human resources department (if you have an HR department) informed about what’s happening in terms of your diagnosis and treatment.  It may be that you don’t know how ill you are for some weeks, and during and after treatment you will have good days and bad, but if your boss doesn’t know how you are, they and your colleagues can’t support you as you would wish them to. Some bosses won’t be as supportive as you’d like but if you try and hide how you feel or carry on regardless it won’t help you recover or return to work any more quickly, and may well set you back.

Barbara is the founder of Working with Cancer, a social enterprise that provides coaching, support and advice to people living with cancer.  You can follow Barbara on Twitter @workwithcancer.  Macmillan also has a variety of useful resources available here.

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Life – but not as you knew it: Pregnant Pause

In our last blog, Sam Reynolds shared her experiences of living with cancer and a small child. But what if your cancer treatment has affected your pregnancy and fertility?

Chemotherapy, radiotherapy and other drugs can all affect the ability to have children. For many young adults with cancer, coping with post-treatment fertility problems can feel like yet another massive hurdle that has to be overcome– and it’s something that has to be dealt with for years after the initial diagnosis. We also know that fertility issues are often dealt with poorly by clinicians; in Shine’s 2012 survey of young adults with cancer, almost 50% of people told us that they hadn’t felt adequately supported to preserve their fertility prior to starting treatment.

Writing poignantly below, our writer tells us about her experiences of terminating a pregnancy, cancer and fertility treatment. Cancer and pregnancy is rare, and we know that there aren’t any easy answers to infertility. We firmly believe, however, that shedding more light on these experience is important. So many young adults with cancer deal with infertility quietly and on their own, struggling to make sense of what they’re experiencing. We want to change that.

To get in touch, please check out our Facebook page, website or follow us on Twitter.

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Pregnant Pause: Cancer, Termination and IVF

Three and half years ago I was diagnosed with bowel cancer, aged 30. I was also eight weeks pregnant with my first baby. The shock of the diagnosis was quickly superseded by having to make some important decisions and take many actions. Requesting to see the top specialists in the areas that I was now acutely involved in – oncology, surgery and gynaecology – it quickly became clear that it would not be possible to keep the baby if I was going to survive. The location of the tumour, and the radical surgery required to remove it, meant that we couldn’t. Having explored as many options as possible, I had a termination two weeks after the diagnosis. I remember asking my husband to write down very clear bullet points about why this had to happen; I wanted to be able to reassure myself later if doubted my decision. We were devastated.

At this point my medical team said there was a chance my fertility would be ok, as long as surgeries and treatment went smoothly. I knew that I may be eligible for in vitro fertilisation (IVF) and I was given a three-week window in which to try it before my first surgery. Despite being told there as a high chance it may not work due to my recent pregnancy and short time frame, we got four embryos for storage.

The next year was spent in a whirlwind of treatments and surgeries, dealing with the very physical and even more emotional changes required to ‘get through’ cancer. All the while I spoke as openly and honestly as I could with family, friends and new people in my life about the experience – how I, we, were feeling, and how I was looking forward to it being over.

Coping with life throughout it all was hard at times, and I felt more fragile and weaker than my ordinary self. I found other people’s good news hard to hear but desperately wanted to be ok with things. Pregnancy news in others was often the worst, although pregnant people or their new babies much less so. I asked people to email me their pregnancy news so I didn’t have to process it face-to-face, but felt guilty about having to do so. I knew I had to be rational about normal life carrying on around me but this still felt so hard. People often said ‘you’re strong, I couldn’t cope with what you’ve been through’ but if I ever wanted to ask ‘why me?’ I tried to remind myself equally ask ‘why not me?’. It’s just a shame it’s anyone.

I had to find a way to accept what was going on and what we had had to do. I remember a friend emailing, saying ‘I’m so sorry about the miscarriage’ and I don’t think I corrected her. I didn’t have the energy to explain it or risk feeling exposed, potentially judged, and even more sad.

Eventually after a third surgery I was told I was cancer-free. It is often at this point cancer survivors talk of their difficulty in adjusting to life – finding their new “normal”, one you didn’t choose or want to have to explore. Despite doing well in many ways – I am healthy again, eating well, and have made exciting changes in my career, the emotional fall out has been had the biggest impact. I feel guilty for wondering whether, had I just had cancer to deal with and not the loss of a baby, would I have bounced back better now? Be more adjusted? I just have to keep being honest with those closest to me about how we’re coping and looking for support along the way.

Being pregnant with cancer is rare but it is not unheard of – 30,000 people aged 25-49 are diagnosed with cancer every year in the UK, about 60% (18,000) will be women and a handful may be pregnant at the time of diagnosis. Another way of looking at it is cancer occurs in approximately 1 in every 1000 (0.001%)[1] pregnancies. I am aware of other people like me now – some have been able to keep their pregnancies, others not. The hardest part is knowing that you couldn’t have done anything differently. I tell myself not to dwell on what might have been but that’s hard when you’re looking at your future, thinking about how things might have been so different.

We have now been trying for a baby for over a year, and I’ve been told that I have physical issues that may make it hard to have a baby. Having just found out our first round of IVF hasn’t worked, my resilience is being truly tested and running low. Despite this, I actually feel clearer than ever about our plan for a family, and I know that we will have a family of our own one day – hopefully sooner rather than later. I hope my future involves acceptance, peacefulness and a happy heart. Isn’t that just what everyone wants?

 

[1] http://www.cancer.net/coping-and-emotions/sexual-and-reproductive-health/cancer-during-pregnancy