Our experience of breast cancer is affected by a number of factors that we all experience, but that we may not be consciously aware of at diagnosis or in the days and months afterwards. Nevertheless, the following factors inevitably affect, to a greater or lesser extent, the way that we think and feel about our situation, and can make coping with this illness and āmoving onā even harder.
It can help and support us to realise that these factors exist and can impact negatively on us as we cope with breast cancer.
Treatment
Our experience of breast cancer will also be affected by the kinds of treatment we have for it and how we cope physically with that treatment. Some of our systems will cope better with the treatments than others, whether we have a primary or a secondary diagnosis, although most women will not find them a breeze, either psychologically or physically. Recognising that you are not alone in finding the treatments difficult can be very reassuring ā many women have told me it is a relief to find out that their reactions are normal.
A major reason why we can end up feeling as though we are not reacting normally is that we are often told that everyone reacts differently to the various treatments. Certainly, it is true that we are all individuals and some of us will indeed find them easier to cope with than others, either physically, psychologically or both. However, many of us have reported similar reactions. For example, even though we know that we are having treatment for our own good, we can feel very vulnerable and even violated after surgery and during chemotherapy and radiotherapy.
This view is confirmed by Dame Jenni Murray, who said of her experience of chemotherapy:
It runs counter to any principle of self-preservation.1
This reaction is common enough, but is seldom talked about and not well understood, and it often helps women to know that they are not alone in feeling like this. It can also be a shock to learn that treatments go on for so long. The public perception of treatment for breast cancer is that it is over fairly quickly, whereas, as we know, it usually goes on and on, in a way that is totally exhausting. I want to reassure you that you are not alone if you feel or have ever felt like this.
Myths about treatment
MYTH: These days, chemotherapy and radiotherapy are easy treatments to cope with.
Sarah, diagnosed 3 years ago, says:
Not enough preparation and warning is given to patients about not only the immediate effects, but also the long-term effects Iām still feeling now. I felt I wasnāt prepared enough for my radiotherapy treatment, it was almost glossed over and expected to be āa walk in the parkā compared to the 8 sessions of chemo I had just undergone. When taking into account how weak your body and mind are from the treatment you have just finished, the radiotherapy is then everyday. I found it exhausting just getting to and from my appointments, but mentally and emotionally I was reminded about my illness every day. For 28 days, my life consisted of nothing but cancer, machines and doctors ā it didnāt seem such a walk in the park!
Magda says:
The treatments were not easy, but I felt better physically than I expected to. It was the emotional effects that got me. They hit me out of the blue. Nobody had told me Iād feel so at the mercy of the machinery and the people organising the treatments, and I still havenāt got over that.
Lou says:
I was diagnosed with breast cancer in May 2001, and had surgery followed by a course of chemotherapy and radiotherapy. The chemotherapy made me feel pretty awful, tired, drained of all energy, but I was prepared for that and admit it wasnāt as bad as I thought it would be. I was less prepared for how bad the radiotherapy sessions made me feel. I had to drive about 45 minutes every afternoon for the treatment, and sometimes struggled to get home again. After the sessions I would feel dizzy, my legs would feel as if they wouldnāt hold me up and I felt nauseous. You donāt generally hear that radiotherapy will make you feel ill, and feel that it should be a breeze, but I would say it was almost as hard to get through as the chemo.2
Rosa says:
I wish that someone had talked to me about the treatment in advance, that someone had explained exactly what would happen, what position I would have to lie in, how the radiotherapists would have to concentrate all their attention on ensuring that the position was correct and would have no time to be concerned about the emotional impact on me, and especially if someone had told me of the feelings that could arise for me. I know now that not everyone experiences radiotherapy as such a brutal and traumatic treatment. But it would have made such a difference if someone had told me that I might feel disempowered, exposed, controlled, violated, victimised. Because that is how it felt, but for a long time I thought I was the only person in the world who had ever felt this way because of this treatment. I thought I was going crazy. If only someone had prepared me, if only someone had told this truth.
As Sarah, Magda, Lou and Rosa have all said, treatments are made harder for us if we are not told what they can really be like. The harshness of them can then come as a total shock, whereas those of us who have been prepared well can sometimes find a treatment easier than we feared, as Lou pointed out. Also, some aspects of the treatments are not even familiar to many of our doctors and nurses ā for example, the fact that they can make us feel so vulnerable. People outside the medical and nursing professions are often even more ignorant of or can turn a blind eye to their real effects ā both physical and emotional. As you have probably noticed, many people, including some health professionals, tend to assume that:
ā¢ treatments are easier to cope with than they often are
ā¢ they are over and done with quickly
ā¢ the emotional effects of the treatments are seldom significant.
As women coping with this diagnosis that is so desperately hard to deal with, we can end up feeling even more miserable, confused and torn because of the ignorance of others and their unwillingness to accept this reality.
As a result we can then easily feel that we are not coping with breast cancer āproperlyā if we find the treatments too hard or are too upset and depressed during or after them. We can feel as if our reactions are not normal, even though they are. It can then be hard to admit, either to ourselves or to others, how we really feel.
As a psychologist, I want to reassure you that:
ā¢ The deep emotions that we feel ongoingly, to varying degrees, after a diagnosis of breast cancer, and during and after surgery, chemotherapy and radiotherapy, are normal.
ā¢ Most women find the different treatments hard to cope with. Some of us find one treatment more difficult to cope with than another, and some of us struggle more emotionally than physically, or vice versa. Sometimes we feel under pressure to say that we are fine and/or that the treatments are fine both during and after the initial treatments have ended. However, most of the women I have spoken to since I was diagnosed admit that:
ā they struggle, to a greater or lesser extent, to cope with the side effects of chemotherapy, radiotherapy and hormonal treatments
ā they censor what they tell people, including family, friends, doctors and nurses, for fear that they will be judged ātoo anxiousā, ānot copingā or āgoing madā, and because they donāt want to offend or upset anyone. For example, Suky commented that āEveryoneās inevitable lack of awareness made me very angry and very upset, all of which was kept inside as we are not supposed to make a fuss, are we?ā3
ā¢ Extreme, deep and long-lasting emotions are a perfectly normal reaction to breast cancer diagnosis and its treatments ā not least of all because breast cancer can recur and the effects of treatment can endure. Although we know that women can live for years after a secondary diagnosis, a recurrence or spread of the disease is not what any woman with a primary diagnosis would want, and feeling terrified of this is perfectly normal and to be expected.
ā¢ Depression, although very unpleasant, is a very common and normal response at any stage during breast cancer, even long after all the treatments are over.
Enduring emotions
Sarah, who was diagnosed three years ago, said:
The fear of cancer returning is something you never get used to. I get irritable, angry and at times often irrational when it comes close to my 3-month check-up. Itās not even something I consciously put myself through, itās just always there in the back of my mind.
You might well be able to identify with the way that Sarah feels, and also with the following statements:
ā¢ It is hard, if not impossible, not to be terrified of recurrence, and this fear and terror does not go away, even if we shove it down as much as possible. Itās always there, just beneath the surface.
ā¢ For a significant number of us, the fear of recurrence can get worse over time. If it does, this is perfectly understandable, not least because the longer we live post-diagnosis, the more we dare to believe that we will survive breast cancer. Many of us also fear having to have more treatment.
MYTH: You should be over breast cancer by now ā itās not normal.
ā¢ We all fear that we will lose our lives to breast cancer, even if we can barely admit this to ourselves, let alone to other people.
ā¢ We can easily struggle to āmove on.ā This is perfectly normal, and there is no set date by which any woman diagnosed with breast cancer should feel she has to āmove on.ā It takes time to adjust to this diagnosis, and the whole concept of āmoving onā is often unhelpful, as it puts us under pressure that we could do without.
ā¢ As human beings, most of us will deny how we are feeling even ...