Being diagnosed with breast cancer can be overwhelming, and it is normal to experience a wide range of emotions from diagnosis through treatment to living day to day with the illness. The women we interviewed spoke about their feelings, what caused those feelings, and the effects of dealing with negative emotions. Even though the emotions were challenging at times, these women also found ways to cope with these feelings and described how their lives had been enriched in some ways because they had to face a serious illness.
Women first and foremost experienced fear and anxiety during the time it took to determine a diagnosis. They were not certain of what was to come, how long they had to wait and did not know what would happen next. These feelings provoked a sense of loss of control, stress, sleepless nights, and a range of emotions and mood swings including crying and panic attacks.
By the time treatment started, women had more knowledge about their diagnosis and they were seeing health professionals on a regular basis. Some women described feelings of not accepting the illness, anger and aggressive behaviour. When things got particularly challenging, a number of women described experiencing panic attacks, hyperventilation and the feeling that it became more then they could handle. May-Lie, described having panic attacks and her bewilderment towards her feelings as she did not understand her own reactions. She had some challenging encounters with health professionals due to her emotions and was unable, at times, to understand what was explained to her.
Some women spoke about their thoughts on more difficult questions about life. Things that seemed so normal before had now become less certain. For example Jocelyn wondered what it meant to be a woman while undergoing treatment and Isla lost the confidence in her body “I used to think that my body would never do that to me and now I think okay my body is probably willing to do anything to me at this point.” Similarly, it was difficult for some to place importance on what they felt were smaller problems but that were still important to other people. Other women worried about the loss of intimacy with their partners or were worried about their children. Not everyone was at ease in discussing these concerns or feelings with others. Debbra, for example, stopped contacting people because she wanted to be strong for them and found it difficult to call them when she was not feeling well.
A number of women described feeling depressed during different stages of their treatment and/or after their treatment. Patricia experienced depression as a side-effect of the hormones she was taking. Nadia (A) started feeling depressed during the Christmas period and felt that she should return to work so that she had something else on her mind.
Another challenge women told us about was when friends died who had been diagnosed with breast cancer. And some women thought seriously about not wanting to live anymore during their treatment period.
Most women agreed that feelings, like depression, sadness and worries, were something that must be dealt with in some way. For some, this meant taking medication to treat the depression or to sleep better. In the topic pages coping and positive effects on self, women described how facing the diagnosis of a serious illness helped them to look at life differently. In the topic page finding and sharing information some women described how helping others was a means to feeling better themselves. Women found new ways to cope and Kathryn, for example, has lived with advanced breast cancer for 12 years and she calls herself “hope in a bottle” for other women attending the metastasized support group. Several women agreed that it is a good idea as well to find professional mental health support as it can help you go through certain emotions more easily. Or as Melissa said “I don’t think that people should be afraid to see a psychologist or a social worker or even a psychiatrist. I think that it’s really important to be able to go in with a really good frame of mind.”
Thinking about the ‘future’ had a different meaning for many women. Some spoke about their hopes to still be around to see, for example, their children or grandchildren grow up. Jeanette described the emotional impact of thinking “Here’s my daughter in a beautiful prom dress; will I ever see her in a wedding dress?”
For Shelley, it meant that she feels less comfortable about future moves, for example when retiring, as that would mean leaving the health professionals that know her so well now.
Some women had different responses to the uncertainty about the future and, for instance, started celebrating life more intensely - celebrating birthdays being happy to have lived another year rather than feeling sad that they had aged again. Kathryn said: “My husband’s biggest fear is getting old and (for) me I’m blessed to be old”.
Thoughts about death
Joanne spoke about how cancer and thoughts about death are often very closely related for people. She said “You can’t hear the ‘C’ word without thinking about death.” Many women described thoughts about death or about the possibility of a premature death. Women described various fears, including the fear of leaving people behind who need care, the fear of suffering or being alone when dying, and fear of recurrence (see topic page follow up care and risk of recurrence). Women also spoke about the difficulties of seeing other breast cancer patients die or having guilty feelings of being the one that is surviving while others die.
Not all women thought about death – some said things like they were trying not to dwell on it, not thinking about it, or rather focusing on short-term things. Isla felt that it was not yet time to think about death when she was diagnosed with a treatable cancer. Gaye and Debbra described life altering events in the past that had affected their outlook of life. Gaye had a near death experience and Debbra had lost a daughter. Because of these experiences, they described living with different priorities since then and already had a different outlook on life and death prior to their diagnosis. Tina says she lives everyday as if it is her last and she accepts to die whenever it happens.
Death was not only a challenging subject for the women but thinking about it helped them reflect on their current life and the things that were important to them.
Some women did undertake practical arrangements in the event of their possible death. This included writing a will, organizing finances and other things. Others prepared gifts for their loved ones, Iceni, for example, made quilts and Debbra is making bracelets.
You can read more about how women approached talking to their children about the possible death of their mothers in the topic page talking to children about cancer.