Friends who say “you are lucky”
risk a bashing from survivors
When my mother had cancer in the 60s, she spent weeks being cossetted in hospital…..
But left without a single pill or drug to take.
She lived for another 50 years, and had few after-effects.
Contrast her life after cancer with that of today’s cancer patient
Who often feels neglected, abandoned or just not listened to by doctors who are too busy to listen to our concerns – they are getting on with treating the next patient
- Our generation will – on average live a lot longer
- But we have to live with depression and after effects of all the drugs, chemo and radiotherapy that bombard our bodies.
- Yes, most of us are happy that these aides are there to help up live longer. BUT the downside is……
- You expect to be elated, but, as a ground-breaking new book reveals, cancer survivors are often left feeling depressed, exhausted and even angry.
What type of people would benefit from The Cancer Survivor’s Companion?
More people than ever are surviving cancer. But many struggle with life after the disease, as explained in a revealing new book by psychologist DR FRANCES GOODHART and health journalist LUCY ATKINS.
“People who are getting on with their life, are managing, functioning, but are finding that when they get their head on their pillow at night then the worrying thoughts crowd back in – they find that they are just not feeling that they are back where they want to be. They are people who are really struggling psychologically and probably need one-to-one back-up.”
The authors identify some of the most common problems . . .
Low mood — or even depression — is one of the most common side-effects of cancer survival. Research has indicated that between 25 and 40 per cent of people may go through some depression after cancer.
Sometimes this feeling kicks in almost as soon as treatment ends, but it might also hit you months or even years later. There are many reasons why your mood might plummet after treatment, but the basic summary is simple: you have been through a very tough experience, physically and emotionally, and it takes time to recover.
You are not mentally ill, you are not ungrateful or a wimp, and you do not automatically require professional help (though you may find this useful). You’re just feeling sad.
Your own expectations about life after cancer also play a part. Often people who are going through cancer treatment make deals with themselves about what they’ll do if and when they get the all-clear.
‘I told myself, and my wife, that if I got through this I would put the rest of my life to good use,’ says Keith, 45, a leukaemia survivor.
‘We talked about how I’d leave my boring job in accounts. We’d set up a residential home together to provide a loving and homely atmosphere for elderly people in their twilight years.’
But the pressure ‘to make the most of life’ can — and often does — backfire. It can feel overwhelming. And this can leave you very confused, lost and low.
Then there is the huge hit your body has taken. You may be scarred and shaken up. You may have suffered enormously. You may feel overwhelmed by side-effects, such as fatigue, mobility difficulties, pain, discomfort or lymphoedema (swelling). On top of this, your general strength and fitness will probably have dimisnished.
The Victorians had a concept of ‘convalescence’. They recognised that after a major illness it takes someone time to recover and regain their strength. But over the years — maybe because of the amazing advances in medical treatments — we’ve somehow lost this valuable idea.
My mother spent weeks in hospital after her mastectomy. Today’s patient is chucked out of hospital one or two days post surgery, carrying disfiguiring drips, mentally bruised and battered, and told “you’ll be fine”.
The expectation these days is that you should be raring to go the moment you are discharged (or as soon as the time between follow-up appointments is lengthened). Instead of telling yourself you shouldn’t feel low, allow yourself time to feel this way.
Sadly, you can’t pack yourself off to a Victorian clinic in the Swiss Alps, but try to work out how to look after yourself while you ‘convalesce’.
There are a lot of practical ways to tackle depression and many effective ones involve simple lifestyle changes. These include eating well, getting active, even just going back to your old ‘grooming’ routines.
Mixed emotions: Rather than being relieved, many cancer survivors feel angry about why they had to suffer and the treatment they had to endure
If one more person tells me I am so lucky to have got through my cancer, I won’t be responsible for my actions,’ says Gill, 46, a breast cancer survivor. ‘Yes I’ve survived, and I’m immensely relieved about that, but to suggest I’m lucky to have had my breast removed, gone through chemo, lost my hair and had an early menopause shows how ignorant people can still be about cancer.’
Like Gill, you’ve faced your cancer and, after being given the all-clear, are where you have longed to be. So why are you still angry?
One reason is that you still feel threatened. Though cancer is no longer an immediate danger, it might still feel close by. You may be experiencing feelings of helplessness. During treatment, you and your medical team are busy doing something about the cancer.
But when you reach the end of your active treatment phase, even though it’s obviously what you have been longing for, you can end up feeling lost, even helpless.
When active treatment ends, people often begin to look backwards, trying to work out what caused their cancer. It’s common to go over and over this.
If you smoked, drank too much alcohol or did any of the numerous carcinogenic things we all do every day, then you might feel regret and guilt. You may also feel angry at yourself. Other people’s expectations can be frustrating. Whether they assume you’ll instantly spring back into your normal life or insist on treating you like a fragile flower, it’s common to feel misunderstood.
Anger is not always bad. There are certain situations where it’s useful to get angry: it can help you respond quickly to a threat or motivate you to challenge something unfair or make sure your needs are met. When the hospital where I was treated brushes off my concerns, I find as a journalist I can give a voice to my anger by thinking ‘laterally’, and writing to the right person to suggest ways to improve the way we are treated.
It’s perfectly reasonable, for instance, to be angry if you hear the local chemotherapy suite is closing. You might use your anger to write letters to the authorities or set up a campaign to keep it open. However uncontrolled, over-the-top or misplaced anger is difficult not just for you, but for the people around you, too. Similarly, the new Health Bill is closing down many useful and helpful services – so we can rally round and fight closures.
The Hydrotherapy pool at Chelsea and Westminster Hospital was supposedly ‘shut for maintenance’. This went on and on for seven months; so those who used to use the pool got together and started writing letters; yesterday I received a letter saying it had re-opened. Well done, girls!
There are so many other ways to prove Patient Power works! So don’t be afraid to tackle them.
Common side effect: Battling the disease physically and emotionally can leave many people exhausted
Fatigue isn’t like any tiredness you’ve had in the past. It affects you both physically and mentally. It can be overwhelming or niggling. Or it can veer between the two.
It is also the most common — not to mention the most frequently ignored — side-effect of cancer and its treatment. Fatigue is a physical and mental response to the stresses and treatments that cancer brings. It is also a known side-effect of certain medications used in chemotherapy (it can take a surprisingly long time to get over these.) Other causes include ongoing medication and changes in your immune system or hormone levels.
Your body is also likely to be out of condition — this can make you feel drained and lacking in energy — as, too, can disrupted sleep, which is very common among cancer survivors. Your body has taken a huge hit and needs to be built back up.
You need to learn to prioritise your tasks and to plan ahead to allow for this prioritising. Pace yourself. Take a nap EVERY AFTERNOON. The Victorians knew this was sensible – so did Winston Churchill.
The above includes extracts from The Cancer Survivor’s Companion by Dr Frances Goodhart and Lucy Atkins, published by Piatkus at £14.99. © 2011 Dr Frances Goodhart and Lucy Atkins. To order a copy for £12.99 (including p&p) call 0843 382 0000.