Living with Lung Cancer

Maintaining Daily Life

So long as you are able, doing the things you usually do helps keep you active and can take your mind off the illness and make life as ‘normal’ as possible.

But some things will change: your symptoms may limit what you can do, and your treatment will require a string of appointments or stays in hospital. After surgery, there’ll be a recovery period, and chemo or radiotherapy might produce side effects that you need time to get over.

Working with lung cancer

Whether or not you work through your cancer is a personal decision. It might be influenced by worries about money and other things in your life, such as how much support you have. But the main consideration should be your treatment.

You’ll need time off for doctor’s appointments, tests and treatment. You’ll need time to recover from surgery, and chemotherapy and radiotherapy can leave some people feeling too unwell or tired to work.

Talk to your employer: It’s a good idea to talk to your employer about your diagnosis as early as possible. Employers have a duty under the Equality Act 2010 to make ‘reasonable adjustments’ to your job or workplace so that you can keep working. And they are not allowed to treat you less favourably than other workers because you have cancer or when you’ve recovered from it.

‘Reasonable adjustments’ can include things like changing your duties or hours, allowing you to work from home, or providing equipment to help you. Most workers with lung cancer need, above all, time and flexibility.

As it’s hard to know in advance how treatment will affect you, it may be best to delay a decision about work until after your first bout of treatment. You might sometimes be able to choose between two treatments that work equally well and pick the one that causes the least disruption.

• For a comprehensive guide to work and cancer visit the Macmillan website

Dealing with breathlessness

Breathlessness is a key symptom that can limit your ability to work or travel comfortably. Watch this Roy Castle Foundation video to understand more about it.

Planes, trains and automobiles

Travelling with lung cancer is not necessarily difficult. It depends on how your cancer or treatment affects you. There are times when you should not travel. Speak to your cancer doctor or lung cancer nurse specialist when you are thinking of travelling, whether in the UK or abroad.

If you are travelling long distances by air or rail and might need help, mention this when booking. Most operators can provide assistance if you need it. Make sure accommodation you book is suitable; if you can’t manage stairs, you won’t want a room on the third floor with no lift!

If you are going abroad and use oxygen, you’ll need to arrange the supply at your destination. You also need to know about rules around travelling with medicines, especially things like morphine – rules differ from country to country.

• Download advice on travelling with lung cancer from the Roy Castle Foundation

• See ‘Travelling with cancer’ at Cancer Research UK

• Visit the NHS ‘Healthcare abroad’ section for a country-by-country guide on using foreign health services

Driving: Most people with lung cancer can continue to drive. In some circumstances, however, you are required to tell the DVLA about your cancer (and if you don’t it could cost you £1,000!). You can discuss your fitness to drive with your doctor or lung cancer nurse specialist.

• Check ‘Lung cancer and driving’ at GOV.UK to see if you need to report your cancer to the DVLA. If you do, the form is provided on the page. If you have a bus, coach or lorry licence, you must tell the DVLA in all circumstances.

Insurance – some cover notes

Various types of insurance might be affected by your lung cancer.

Travel: People with lung cancer often have difficulty getting travel insurance. It can sometimes take considerably longer to arrange than you’d expect, so start looking well before your trip. If going to Europe, take your European Health Insurance Card (EHIC) which gives you access to healthcare on the same terms as citizens of the country you are in. But you still need your own insurance as there are many things the EHIC won’t cover.

• For more information on getting travel insurance, and suggested insurers and brokers others have used, download ‘Travelling and lung cancer’ from the Roy Castle Foundation.

Motoring: Your car insurance should only be affected if your cancer makes it riskier for you to drive. Generally, you should get car insurance on standard terms. Check your existing policy – some require you to notify the insurer that you have lung cancer and if you don’t, it might be difficult to claim later. If you need adaptions to your car to make driving easier, you must tell your insurer and you might have to pay more.

Health: If you already have one of the many types of health insurance on the market, your lung cancer diagnosis could mean your policy pays out. Starting health insurance after your diagnosis might be difficult and any new cover might exclude things related to your current illness.

Life: There are various types of life insurance – these pay out on the death of the insured person. If you already have a policy your illness should make no difference to it. If you are working, you may also have life cover though your employer, so check if you aren’t sure. It may, however, be difficult or impossible to get new life cover after being diagnosed with lung cancer.

• Go to the Macmillan website for a guide to insurances for people with cancer

'I'm just being me - I play pool on Wednesday nights'

Craig Bryden enjoys his social life, and he and his wife try to take several holidays a year. When his treatment started, he got painful mouth ulcers and was so tired he couldn't walk to the end of the street. But, he says, "as the treatments have gone on, we’ve realised I can still do a lot of the stuff I was doing before. We’ve been on holiday and I still do all the driving.

"I’m just being me. I play pool on a Wednesday night. I go to the pub and watch football. And, of, course, we’re still planning holidays."

• Read Craig’s story at the Roy Castle Foundation

Pride, and prejudice

Studies in the US have found that people who are lesbian, gay, bisexual, transgender or in other minority sexuality/gender identity groups are more likely than the general population to contract lung cancer. Your sexuality doesn’t put you at greater risk - the reasons come from a combination of social, economic and behavioural factors. Data on this is sparse in the UK, but LGBT people do report different experiences of their healthcare from those in the wider population, often citing prejudice or insensitivity as key concerns.

• Read the Macmillan report on LGBT people with cancer

• Read the Cancer Research report on health inequalities

• Join the LGBT Lounge at Macmillan cancer support