WE ALL REACT differently to a cancer diagnosis. How you react is going to depend on many things including your personality, your personal and family circumstances, how advanced your cancer is, what treatment you need, and your own individual coping style (are you a ‘glass half-full’ or ‘glass half-empty’ person, for example?).
The first reaction when your doctor tells you that you have cancer is normally shock, and even disbelief (did they get my test results mixed up with someone else’s?). Then there is often a period of distress in which you may be extremely anxious, depressed or furiously angry – and perhaps a mixture of all these. These reactions are very similar to the stages of grief (denial, anger, bargaining, depression and, finally, acceptance).
Lindsay, an American cancer nurse who got bowel cancer herself, wrote a blog, ‘Here comes the sun’, about her initial feelings of confusion and terror. She framed it as a letter ‘to every cancer patient I ever took care of’. Here is an extract from that letter:
I’m sorry. I didn’t get it.
This thought has been weighing heavy on my heart since my diagnosis. I’ve worked in oncology [cancer care] nearly my entire adult life … I prided myself in connecting with my patients and helping them manage their cancer and everything that comes with it. I really thought I got it – I really thought I knew what it felt like to go through this journey. I didn’t.
I didn’t get what it felt like to actually hear the words … You were trying to listen to the details and pay attention, but really you just wanted to keep a straight face for as long as it took to maybe ask one appropriate question and get the heck out of there fast. You probably went home and broke down under the weight of what you had just been told. You probably sat in silence and disbelief for hours until you had to go pretend everything was fine at work or wherever because you didn’t have any details yet and wanted to keep it private still. You probably didn’t even know where to start and your mind went straight to very dark places. That day was the worst. I’m sorry. I didn’t get it.
I didn’t get how hard the waiting is. It’s literally the worst part. The diagnosis process takes forever. The different consults, the biopsies, the exams and procedures … and the scans. Ugh, the scans. You were going through the motions trying to stay positive– but at that point, you had no idea what you were dealing with and the unknown was terrifying. Knowing the cancer is there and knowing you’re not doing anything to treat it yet is an awful, helpless feeling. I’m sorry. I didn’t get it.
If that’s what you’re feeling right now, please be reassured – things will usually get better over the next few weeks as the pieces of your own cancer jigsaw fall into place.
Trish went through a very black period for a week (she couldn’t speak to anyone except her husband and he’ll confirm that she wasn’t her usual charming self) even though, statistically speaking, the outlook for her cancer turned out to be extremely good.
Liz felt like she was looking down watching someone else go through chemotherapy. It couldn’t be real. It took her a long time to accept that she did have cancer.
In the first few days, weeks and even months, you will probably feel a deep sense of sadness and loss. Like we did, you may lie awake at night feeling thumping in your heart and desolation in your soul, planning your own funeral. You may feel guilty – that it’s your fault you have cancer and your fault your loved ones have to cope with it. You may hate all the pink breast cancer products on sale in shops that seem to make light of what you are going through. All of these things can make it very difficult to concentrate and make decisions, especially while you are waiting for treatment to start. You may find you are living in a ‘dream world’ – just going through the motions without really feeling anything. These feelings are often even worse if you’ve found out that your cancer has come back.
Whatever you are feeling in the beginning, it does tend to get better in time so we suggest you acknowledge these feelings and ride them out. As time goes by, two things will probably happen. First, as you learn more about your cancer, its treatment and your prognosis, your uncertainty is replaced with a positive treatment plan (see Chapter 3). Second, you will gradually put your cancer into perspective, and fit it in to your everyday life.
If your head is (metaphorically) exploding, we strongly suggest you talk to your GP or specialist nurse, or use the Breast Cancer Care and Macmillan advisors and forums for help. Here are our tips to get you through the early days:
● Ask one or two people to be your ‘cancer buddy’ – that is, to help you emotionally and sometimes physically during treatment. You need to know they will be there to pick you up if you fall in a heap. If you’re in a stable relationship this will probably be your partner, but you could ask one of your parents, a sibling or a close friend.
● Are you going to research your cancer? You may want to read everything you can find about breast cancer to help you feel less anxious and more in control, but it’s worth bearing in mind that not everything you read will be tailored to your specific cancer, and some websites and blogs can be scary to read, and factually wrong. See Chapter 6 for tips on how to find extra information. Alternatively, you may be happy to stick with the information your medical team gives you.
● Try writing about your cancer. Keeping a private diary or a public blog can help you gain a sense of coherence and make sense of your emotions.
Liz found it very hard to cope with her cancer diagnosis because she knew too much about what might happen in the future. She turned to blogging to help her make sense of what was happening, and this was a lifeline for her.
Trish didn’t write during her treatment, but she wrote an academic paper about her cancer experience when her treatment had finished.
● Do something to take your mind off cancer. If you can’t concentrate on a book, try watching old films or box sets that are familiar and comforting. Alternatively, take up jigsaws, gardening or going for a walk to get some fresh air and a sense of perspective. Doing a little exercise every day will get your endorphins going and hopefully make you feel better afterwards.
● Having cancer can be very lonely. You may not meet another patient during your treatment, and therefore have no idea whether what you are feeling is normal. If your hospital has a local cancer drop-in centre, they can be a great source of support (see Chapter 14). Neither of us had one nearby. Instead, we found support from online forums and social media. We found that linking up with other patients and sharing our experiences was a lifeline.
● Play the cancer card! The rule is, you can play it whenever you want and as often as you want. If you get invited out to dinner and don’t feel you want to go, turn the invitation down. If a friend wants to come over and talk but you just want to sleep, ask them to come another day. If you can’t concentrate at work because you’re waiting to hear what your results are, you may need to go off sick. Don’t feel guilty – you are sick, even if the sickness at this stage mainly consists of an overwhelming emotional reaction. (We both played the cancer card many times, and learned not to feel guilty about it.)
● Start a ‘Jar of Joy’, like Liz did. Good things do happen, even when you’re dealing with cancer. Every time something good happens, no matter how small or silly, whether it’s hearing the birds singing in the morning, finding money down the back of the sofa or getting a hug from your children, write it on a little card and put it in a jar. In time, the jar will fill up with lovely things. When you’re at your very lowest, go to the jar and read a few cards. We promise it will make you smile. The idea came from our friend Dr Kate Granger, who, before she died, taught us both a lot about living with advanced cancer.
While a strong emotional reaction to a breast cancer diagnosis is normal and healthy, most people don’t need to ‘medicalise’ that reaction by seeing a doctor about it. However, there are at least two situations when it is worth seeking professional advice: overwhelming anxiety and severe depression.
One reason why breast cancer is so anxiety-provoking is that seems like it takes forever to find out that you definitely have cancer and for your treatment to actually start. You may feel like you’re being passed from pillar to post if you need to have extra scans and tests. This is why your initial experience may be one of uncertainty and loss of control in the face of a life-changing (and potentially life-threatening) diagnosis. These are powerful preconditions for developing anxiety. Anxiety is also common immediately after your treatment ends when your doctor has discharged you back to the care of your GP. It is hard (subconsciously) not to feel abandoned after what may have been an intensive period of support and attention, especially if you had chemotherapy.
Anxiety as a medical diagnosis can be defined as an unpleasant subjective experience associated with the perception of threat. Our bodies and minds have inbuilt safety mechanisms for escaping from threats, called a ‘fight-or-flight’ response. So if you feel your heart thumping quickly in the middle of the night, it’s probably because your subconscious has conjured up an ‘impending doom’ scenario and your body has responded with a surge of adrenaline. This tips you into a state of heightened arousal with a fast heart rate, faster breathing, muscle tremor (hold out your hands in front of you – do they shake?), sweating and rumbling in your tummy. These physical reactions are accompanied by unpleasant psychological ones that includes apprehension, feeling powerless and fear of losing control.
Low-level anxiety is a normal response to getting breast cancer, but you may need medical help if you experience any of the following symptoms:
● Inability to focus. Are you regularly unable to focus on normal life because of uncontrollable fears and worries? For example, do you break off mid-conversation or have to leave the room?
● Physical symptoms, such as a racing heart, light-headedness (which probably indicates overbreathing) and tingling in your fingers (ditto). Does your chest feel tight and/or do you have trouble taking a really deep breath?
● Trouble sleeping. Do you find it impossible to get a full night’s sleep? In particular, are you waking most nights and then unable to get back to sleep for hours?
● Abnormal eating. Are you so anxious that you’ve stopped eating (i.e. are you losing weight?) or is your ‘comfort eating’ making you gain large amounts of weight?
● Panic attacks. Do you have intermittent attacks of feeling absolutely terrified and overwhelmed, with a thumping heart, sweating and a sense of light-headedness, which last around half an hour before slowly improving?
If you’ve said ‘yes’ to several of the above questions, you should talk to your GP. They may suggest anti-anxiety medication (which is surprisingly effective at reducing the unpleasant feelings and panic attacks), talking therapy with a counsellor or even (if you’re having severe symptoms) a referral to a psychiatrist.
Cognitive behavioural therapy (CBT), usually provided by a clinical psychologist, has been shown to reduce the severity of anxiety symptoms in breast cancer. It is designed to help you change patterns of thinking and behaviour – especially ones that have become entrenched like ruminating on worst-case scenarios. Rather than delving into your past (like psychoanalysis), CBT focuses on problems and difficulties you are having in the here-and-now and looks for ways to improve your state of mind in the present.
As well as talking to your GP, you might like to try these self-help techniques:
● Talk to someone. Have a good moan to your partner, best friend, ‘cancer buddy’ or religious leader (vicar, priest, rabbi, imam, etc.). They don’t have to be able to solve your problems to make you feel better; just listening to you will help.
● Write about it. Keeping a private journal or diary lets you keep track of your thoughts and feelings, and may help you identify triggers for your anxiety.
● Yoga, meditation or mindfulness therapy. These can all help you feel calm and control your breathing, and hence address one of the triggers of panic attacks (overbreathing). See Chapters 14 and 18 for more information.
● Exercise. Physical activity can distract you, and it also burns up nervous energy. If you’re in a ‘fight-or-flight’ state from an adrenaline surge, use the physiological reaction in a positive way to exercise (see here for exercise ideas).
● Healthy living. Smoking and alcohol sometimes help reduce anxiety in the short term, but try to contain the amount you take as they aren’t good for you in the long term.
Depression is a medical condition that needs treating with either talking therapy, drugs, or both. It’s normal to want to withdraw and grieve, cry and change pace when bad things happen to us. It’s also normal for your loved ones to react with sadness too. But with depression, these symptoms are more severe and persistent. Depression can also come on after you’ve finished your main treatment phase.
To see if you might be depressed (a medical diagnosis) as opposed to feeling sad and down in the dumps (variants of normal), answer these five questions:
1. Do you no longer enjoy things? For example, if your best friend came to cheer you up, would you be pleased to see them, or would you want them to leave you alone?
2. Have you had dark, negative thoughts constantly for several weeks? We all know the initial belly-blow of the cancer diagnosis, but if you’re still feeling totally flat many weeks later, this probably doesn’t count as a normal response.
3. Have you lost the will to live? Suicidal thoughts (or indeed, just wishing that you could somehow go to sleep and never wake up) are rare if you’re just feeling sad but common in true depression.
4. Do you have severe physical symptoms? Depression often comes with physical effects. The most common of these is a change in your sleep pattern. You may sleep for hours and hours, or suffer with insomnia. You may not have the emotional energy to move off the bed or the sofa, and spend all day in bed avoiding people.
5. Do you cry all the time? Do you frequently find yourself in floods of tears for no particular reason?
If you’re saying yes to most or all of the above, you should talk to your GP to get professional help. As doctors, we both know that part of the problem in treating depression is that many people don’t realise they need help, or don’t want to ask for help. Indeed, the feeling that you’re not worth helping is part of the illness. It’s not true: you are worth helping. People care about you and they want to support you. Perhaps show this section of the book to a friend or relative and ask them to help you approach your GP.
Just as with anxiety, there are both medical treatments and self-help treatments for depression. Medical treatments include talking therapies (either one-to-one counselling or group therapy, oriented to helping you explore your feelings around your cancer diagnosis and how it fits with everything else that’s happening in your life) and medication. Drugs can really help treat depression, although they do take several weeks to start working. If your doctor advises you to take them for a short period, you should think seriously about following their advice. Having said that, depression can get better without drugs, and some people treat it with regular exercise instead.
Depression is inherently a rather passive condition. You don’t have much get-up-and-go. For this reason, playing an active part in your own treatment can be very therapeutic (though not easy). Here are some self-help techniques for depression, adapted from the website of the excellent mental health charity MIND (www.mind.org.uk):
● Look after yourself. Take control of your patterns of daily living and try to avoid sliding into a pattern where you have no routine or discipline. Go to bed at the same time every night. Eat a balanced, healthy diet. Make sure you wash yourself and brush your teeth every day. Wear clean clothes. Make your bed. These may seem like huge tasks at first, but they will slowly get easier in time.
● Be kind to yourself. Do something that makes you feel good every day, if you can. Curl up with a good book. Listen to music that makes you dance around the kitchen. Start a ‘Jar of Joy’ (see here). MIND has a similar suggestion for a ‘resilience toolkit’ of written ideas for positive experiences.
● Keep active. Do a little exercise every day. Physical activity is a well-established treatment for depression. You could try listening to a podcast or an audiobook when you go for a walk. When you feel well enough, you could join an exercise class so you have social interaction as well as exercise (see Chapter 18). Make the effort to visit a friend. It will all feel hard because the nature of depression is to want to shut yourself away and not do things. However, if you can walk yourself through one activity per day, this will help you recover.
● Challenge yourself. Keep a diary or journal to write down your negative thoughts and identify things that send you spiralling downwards. Record the things that give you a boost. Try an online CBT programme (the website of the British Association of Behavioural and Cognitive Psychotherapists, is a good place to start – see here for details).
● Stay in touch. If you don’t feel well enough to talk to family and friends in person, text or email them to let them know you’re still alive and well, because they will be concerned. You could even just send an emoji. When you can, talk about how you feel with your close friends. It’s not easy but it’s better than keeping it bottled up. You may want to think about joining a local or online patient support group. Hearing or reading about other people’s experiences can help you to move on from your own.
Now you’re starting to come to terms with having breast cancer, how do you decide who to tell and how much to tell them? These decisions can be really hard to make, and everyone does it differently. In fact, we were complete opposites. In the next chapter, we’re going to help you work out what to say, who to say it to and how to help the people you tell cope with your news.