May-Lie

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Age at interview
59

May-Lie (59 years old) has a partner who has two children. She worked as a secretary but is currently retired.

May-Lie was diagnosed in 2010. A lump was found in her breast during a medical visit to her GP who advised her to wait for the results of the mammography. May-Lie decided to consult with her gynecologist as well and he asked her to follow-up with more tests at the hospital. Within a week, May-Lie had a biopsy and was told that the lump was cancerous. May-Lie received different signals at this time; the gynecologist had told her it was urgent but other professionals tried to reassure her. She was worried, but hopeful that things move quickly as soon as she met the surgeon. The waiting period of 19 days to see the surgeon was really hard for May-Lie; she slept little and was worried. She tried to reassure herself by telling herself that it couldn’t be too bad if they let her wait that long. By the time she did meet the surgeon she was extremely nervous and had a panic attack during the pre-surgical visit. Now she knows that this was a panic attack, but at the time she did not know what was happening to her. Her surgeon thought she was being aggressive. On the day of her scheduled lumpectomy, May-Lie was asked to present herself at the hospital at 7:00 in the morning. She expected to be operated on right away and by the time she had her operation at 13:30 she, again, had become very nervous. Unfortunately her margins were not clear and what May-Lie believed was going to be one surgery for a lumpectomy became a series of three surgeries in 3 months (another lumpectomy followed by a mastectomy). These unexpected events had an enormous effect on May-Lie; she became very anxious and experienced several panic attacks. Before her third surgery she felt unable to deal with it anymore and she realized later that she had hardly remembered anything that was said when she met the surgeon. The experience with the surgeon had been so bad that May-Lie decided to change hospitals for her chemotherapy, even when this meant that she would have to travel more. In her new hospital May-Lie had a totally different experience; she was better informed and was able to interact well with the health professionals. The fact that the healthcare professionals worked together as a team made a big difference to May-Lie and she noticed that everybody was well informed about her illness status. May-Lie appreciated that she was able to call an oncologist on weekends with questions about the side effects of the chemotherapy. May-Lie, who is in remission at this point, finds it hard to accept her scars from the mastectomy. Neither May-Lie nor her partner are able look at the scars or touch them. The level of intimacy in their relationship has reduced significantly since the operations. May-Lie finds great support with her occupational therapist who provides good support and listens well to her concerns. 

Time since diagnosis
2 - 5 years
Phase of treatment
Remission

Text transcripts

At one point, I had pain in my bones. Aïe, it was painful! It was painful! I said: “I have bone metastases, it’s unbelievable.” And even my friend that died, she had back pain, she was suffering a lot because of that back pain and it was metastases. And before she knew that she had breast cancer… well it is because she went to the hospital because she had back pain. But she underwent tests, a CT scan* (Computerized Axial Tomography Scan) and that is how they found out that she had metastases. So when I had back pain, when I had pelvic pain, when I had… I said: “I have metastases, it is… more

Ok, at one point when I saw the oncologist at the hospital, he was talking about the margins. The tumeral margins are high. I had called Info Cancer – we have an anonymous line Info Cancer. “Don’t worry you just finished your chemotherapy. Don’t worry, it’s ok, it’s normal. It goes with it, they will lower.” Well! But as always, it plays a little. I didn’t get back to normal like most people. I was between 4, 4.2, 4.5. At one point I had a resident who went to get the oncologist that I saw. Yeah, but I said: “The margins were never normal!” He told me: “You can have another blood work… more

But it was not keeping me from working out because that is where I vented. I am telling myself: “I am here to vent.” But I had so much pain in my legs and I was also out of breath because of the cortisone, but I was still able to work out. I said: “I must keep moving. This is what is important. I must keep moving to vent.” But that is where I was venting. When I told to the oncologist, he said: “What kind of exercise are you doing?” I said: “I do anything but I am careful with my arm because it was still weak.” But I said: “I am trying to keep moving, to stay active.” He replied: “It is ok… more

He said: “I need to vent, it will make me unwind, I need to vent” because I mean life is not the same. It is completely… I would say that he is a roommate instead of being… he is not affectionate anymore, he is not loving or he still is but in another manner. And me as well, you know life has… completely… I wouldn’t say that it destroyed our life as a couple. That’s not it, he is still with me, but it is at another level… I saw this a little bit in the books that I had. Living with cancer, having sexual intercourse during chemo – forget it! Forget it! It takes everything from you. You do… more

He was uncomfortable. But me, I freaked out, I didn’t cry. I was unable to cry. I was too mad. I was ok, above… But then she was writing it all, and then my boyfriend said: “Calm down…” Finally she said: “No, let her be, she needs this and I am used to this. Let her be, it’s ok…”, meaning “well ok”. I said: “Don’t tell me that I will have to go through this again. Don’t tell me that you missed….” Anyway, there is nothing. I don’t remember everything that I told her but it was…. I prefer not to remember. So finally I went back to the reception, I completed another questionnaire and I got a… more

Will knowing the diagnosis change something? However, I know that the oncologist told me it was a hormone dependent cancer, which means I cannot take hormones. This I know, but the stage. But at some point, because I did not have metastasis, he said: “It is good for you.” Instead of having three hormone receptors negative, I only had two. There was one positive receptor and two negative ones. But the oncologist told me without me asking him, because I wasn’t familiar with this. He said: “In your case, yes it is good…” “What about my case? It is a cancer”. Today he probably knows how I… more