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.

Life – but not as you knew it: Talking it out

A cancer diagnosis changes everything.  Whatever cancer you’re dealing with, whatever treatment you’ve had (or are having), adjusting to life after you hear the words “You’ve got cancer” are never easy.  In our blog below, Viv Wilson shares her experience of cancer treatment and how valuable counselling has been in helping her to cope with all the changes she’s experienced.

At Shine, we know how important the right psychological support can be. We also know that less than half of all younger adults facing cancer get offered counselling – and that’s not good enough.  Many hospitals offer free counselling for people going through cancer treatment. If you think you’d benefit, ask your consultant or clinical nurse specialist for a referral. And remember that Shine’s meet ups  are a great way to meet others who know what you’re going through.

Talking it Out

Guest blogger: Viv Wilson

I was diagnosed with widespread, high grade DCIS (ductal carcinoma in situ) in my right breast in June 2012.  At the time, I was a 42 year-old single mum with twin teenagers.

My mum had breast cancer at 45 and later died of pancreatic cancer.  As the same thing had happened to her mum, I went for genetic testing. As it turned out, I don’t carry any of the known breast cancer genes but I decided to have both breasts removed as a precaution. I asked the surgeon to give me temporary implants so that I didn’t have to be flat chested.  I had a bilateral mastectomy and my new breasts looked great.  But ten days out of surgery I developed a massive infection in my left implant and I had to have it removed. In May 2013, I had the right one removed as well.  It was then that my world crashed around me.

The whole reason I had asked for temporary implants was to avoid being flat chested. To end up like flat chested anyway, after all the surgeries, was a real shock.  I just couldn’t accept the way my body looked.  My stomach stuck out beyond where my breasts should have been which made me really upset.  I felt like I looked pregnant and had I nightmares about getting dressed. I also hated the “softie” breasts that the nurse had given me. Putting them in my bra was just a reminder of everything I’d been through and they often moved around so much they ended up under my chin rather than on my chest!

After my diagnosis and surgeries, I often felt that I couldn’t quite be myself around my family and friends. I am happy and jolly by nature and I didn’t want that to change, but lot of my time seemed to be spent looking after the feelings of everyone else rather than my own.

I wasn’t offered any counselling after my mastectomy.  I did speak to the breast care nurse at the hospital, who was fantastic, but I always felt like I was bothering her, as she was so busy. I felt cast adrift.

It was only after I had the right implant removed privately that I found out about a counselling service that was offered at our local hospice.  I was given the number of the counsellor and decided to give them a ring.  I was feeling so low that I didn’t really have anything to lose.  Counselling is part of my own job so I also knew what it entailed and it didn’t frighten me.

I have always suffered with depression, anxiety and panic attacks but until the diagnosis I was coping with things much better.  Having gone through cancer, it reared its ugly head again and I felt like I was back to square one.  There was so much to think about: Why did this happen to me?  Will it happen again? How do I feel about my body now? How do other people view me?  Do I want reconstruction?  What happened to the me I used to be? The list of things going round in my head was endless.

When I started the counselling, I found that I really needed to talk over the traumas I’d been through, from having weak veins and having the nurses spend a good couple of hours every day trying to get 4000mg of antibiotics into me, to what having no breasts meant to me and how I was going to recover.  But one of the most valuable things for me about having a counsellor is that it is my hour to say what I want to, however I want to.  I have a chance to talk about my fears and worries in a place where I don’t feel judged and I don’t feel as though I’m are going to offend anyone.  To have that release once a week was – and still is – immense.

I have been able to talk through all of the issues I have with the things that have happened.  Although the counsellor doesn’t try to give me solutions, she helps me to work things out myself and has made me realise that many of my thoughts and feelings are normal.  We have also talked about the loss of my mum five years ago and my feelings about how things might have differed had she been here.  There is an endless pot of emotion to wade through or at least that’s how it can feel sometimes.

If someone had told me a couple of years ago how this experience was going to affect me, I wouldn’t have believed it.  I haven’t got to the point where I’m ready to move away from counselling but luckily I’m able to keep going until I feel ready to stop.  Counselling isn’t for everyone, but through it, I have been able to discover who I am and work out where I fit into the world again. What it has also done is to help me to accept who I am now and that this body is my “new normal”.  I have taken myself off the waiting list for reconstruction which feels like a real step forward in accepting where I am today.

If you feel it would do you good, give counselling a go and see if it helps.  Go in with an open mind and get out of it what you need. After all it’s your life, your body and your future.

Viv blogs at http://vivsmiles.wordpress.com