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.
I wrote this and I don’t remember again this is from June 2003. I wrote this to my husband. (reading) “It can’t be just about you anymore, I’m scared, I don’t want to be sick, I don’t want to be cut up, I don’t want more scars. I’m not going to be the happy one all the time anymore I will change, cancer changes you whether you want it to or not. This is my worst fear, this is a nightmare.
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.
There was one point after I had the second part of the mesh removed. There was that 6 weeks where I had to be with the open wound in my abdomen. I think that was maybe the only point where I started to think that "Oh my God." is this ever going to be over? And that was the first time that I really felt depressed. But my husband said that "You know what, hang in there because this is going to end." And, of course, it did and I was quite… After that, things seemed to go well but it was just like a vicious cycle of doctors, infections, surgeries. I think it was 7 or 8 surgeries I had in about 5 years and that was just too many. And I’ve been a healthy person all my life, I’ve never been sick, I’ve been in the hospital four times and only because I was having babies and then I had a tubal ligation but other than that I have been probably one of the healthiest people around. Then all of a sudden, there just one thing right after the other. So it was, it was hard.
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.
And yet we’ve been able to work through that thankfully and that’s important I think in any relationship. And it’s not easy, it’s not easy and it’s not easy to talk about because it is a vulnerable topic. That is one area there’s not a lot of resources on to be honest and I don’t even know if I’m doing it justice in talking about it here.
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.
Interviewer: How did you feel about the pregnancy and the treatment? Did you have any chance to enjoy your pregnancy as well?
Well I had fleeting moments. When I found out I actually, that I’d had the cancer at first, before I found out that I had to have the mastectomy, I was fine. I was shocked and I was like "This is going to make things a bit challenging." But I didn’t know, I didn’t think I’d have to get them removed. I didn’t think I’d have to do chemo. I didn’t know any of that, so I actually wasn’t... I enjoyed the pregnancy up until I had the mastectomy. After I had the mastectomy, it was, it was hard for a while because I was waiting to...I was healing from that. I think I was just so tired in the first trimester and then waiting to find out if I had to do the chemo. Then preparing for all of that that was a really, really hard summer. Then going through the treatments themselves were really difficult.
The birth was fine. I felt great that night. I think, because they said the reason that I felt as good as I did is because I was pregnant and I had a lot of estrogen in my body, which for some people it depletes their body. But for me, because of the chemo and then right after I gave birth, my estrogen went, I had none left. My doctor said it was... she took a test of it and it was someone who was much, much older, like 80 or 90 years old.
So I got really bad post-partum depression and I ended up in the psych ward for a few days. They gave me some medication and stuff to help me because I just I couldn’t sleep and I couldn’t eat. I just... it was the weirdest thing. That was for me my lowest point in everything, was the post-partum depression. I felt way worse in that time than I did finding out I had cancer or anything else. It could have just been, even when I was pregnant, I didn’t want to have to worry too, too much about it. I was scared that the energy would go to the baby so I didn’t... I could all of a sudden just released everything. So that was tough. I had, again, my family there for support and each one of my chemo treatments either my mom would fly back or my dad and my sister lived with me for almost like 7 months, while I was going through all of this. I had like I said, a few times, I had lots of support which was incredible.
Interviewer: And your husband?
He, I think he had a harder time with it. He was living with it all the time and I think he saw me as a certain person and a strong person. Then when I was going through this, especially when I had not the physical problem so much but more... when I was depressed and especially with the post-partum. He’s like "You know, you’re going to be fine, just come home you just have to have a nap." And I was actually, I can’t sleep or eat and I’m not okay and so he had a hard time with the... how hard it was for me mentally but I felt. So it was, he was supportive but he had a hard time for sure, he didn’t understand some stuff.
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 these 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.”
But when I started chemo, this was the hardest intervention; it’s harder, harder than the surgeries. Yes. When I started the first session of chemo, I wasn’t well at all. And I was too aggressive with the nurses. It was like they were inserting poison in my body, I didn’t accept that at all, not at all. It was catastrophic for me.
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.
I went through a lot of fear about the dying. That was pretty scary.
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.
Well thinking about death, I very quickly got my stuff sorted out. Even just financial things looking at insurance policies and that kind of thing. That, my husband was not interested in at all. But for me, that made me feel better, I felt like I was prepared. I got copies of the wills printed, those kinds of things. I think my husband thought that was morbid but I felt that was practical.