Table 1
Participants characteristics
No | Pseudonym | Age | Marital status | Educational background | Religion | Number of years/months post mastectomy | Occupation |
1. | Woman 1 | 28 | Married | Tertiary | Christian | 3 | Housewife |
2. | Woman 2 | 30 | Married | Basic | Islam | 7 months | Trader |
3. | Woman 3 | 37 | Married | Basic | Christian | 1 | Hairdresser |
4. | Woman 4 | 37 | Married | Secondary | Christian | 1 | Cleaner |
5. | Woman 5 | 37 | Married | Tertiary | Christian | 4 | Caterer |
6. | Woman 6 | 38 | Single | Secondary | Christian | 6 months | Trader |
7. | Woman 7 | 40 | Married | Tertiary | Islam | 5 months | Accounts officer |
8. | Woman 8 | 42 | Married | None | Islam | 4 months | Petty Trader |
9. | Woman 9 | 45 | Single | Secondary | Christian | 5 months | Businesswoman |
10. | Woman 10 | 46 | Married | Basic | Christian | 2 | Trader |
11. | Woman 11 | 52 | Single | Secondary | Christian | 2 | Trader |
12. | Woman 12 | 56 | Married | None | Islam | 4 months | Trader |
13. | Woman 13 | 61 | Married | None | Islam | 1 | Petty Trader |
14. | Woman 14 | 70 | Married | Tertiary | Islam | 1 | Businesswoman |
15. | Woman 15 | 78 | Single | Tertiary | Christian | 2 | Reverend Sister |
Source: field data |
Social experiences of women post-mastectomy
It was evident that the majority of the women needed social support from other people especially the family members after the operation. For example, most of them could not wash, cook, fetch water, or even dress up so family members had to help them or do it for them. Some also needed the family members to take care of their children. Others isolated themselves because of privacy or low self-esteem. There were also variations in responses in terms of sexuality. For instance, some of the women feel rejected by their partners because of their condition and others feel they have lost their femininity.
Support
It was evident that the majority of the women needed the physical support of other people especially family members after the operation. For example, most of them could not wash, cook, fetch water, or even dress up, so family members had to help them or do it for them. Others also needed emotional support people to just find out how they are doing.
After the operation, my husband has to bath and dress me up. I could not bend my hand for almost three months (Woman 5).
I used to do all the laundry and Sobolobo (locally made soft drink) and take it round to sell. I cannot do any of them after the operation because of the pain. I have to call my sister for help now… (Woman 2).
…My family is taking good care of me and my husband gives me food. They come around to see how I am doing. I have not heard anyone talk ill about my sickness (Woman 13).
Unfortunately, some of the women did not get support from their family members. They have to do things themselves though it was not as they used to do but because some of them did not want other family members to know about their condition.
"I did not tell any family member about my operation except my husband because I did not want them to spread it. He also did not support so I used my savings” (Woman 10).
"After the operation, none of my family members visited me at the hospital or to ask about my well-being. None of my siblings have called to ask how I’m faring” (Woman 6).
The support was not all that good for me because I have to still perform the house duties, I am still going through it (Woman 3).
Isolation
Among the data collected, some of the women have stayed away from other people for various reasons. Some of them complained they are experiencing minor illnesses after the operation. Some of them felt they were not women again because they have lost one breast and wants to start a new life in a new environment.
I am unable to associate well with people and people do not want to be closer to me especially because of the cough and the sputum I spit out. This has affected me… (Woman 8).
…….I cannot come out because my hand is swollen after the operation, as you can see one is bigger than the other so people look at me and point fingers at me when I come out …… ( Woman 6)
I could not walk after the operation, I had a swollen leg that crippled me, I cannot walk, I move with a stick. I do not get in touch with the people I used to interact with. I am always indoor… (Woman 14).
After the operation, I isolated myself from women. I cannot get close to people because it will pain me if someone avoids me due to my situation. I have “cut” my friends off, I am looking for a new place to rent. Change my environment and be a new person (Woman 6).
Some of the women also are avoiding people because they feel uncomfortable and did not want them to know they have gone for such surgery.
…After the surgery, when my friends are going out, I just support their lorry fare, but I will not go because I do not want people to know… (Woman 1).
….I did not withdraw from people but when I go somewhere and we all share a room. I cannot remove my brazier unless everyone is asleep. I remove the foam and get fresh air. Early morning, I fix the foam so no one will see (Woman 10).
...I cannot change when others are there. They will see you have one breast and will be discussing you with other people. I cannot remove my brazier and leave my one breast hanging… (Woman 7).
Some of the women go out freely because people do not know they have undergone such an operation.
No!!!! I can go to places freely; they do not know. Because of the thing I will put there they do not know my breast is cut off… (Woman 9).
No!!! I did not discuss it with any friend, not even my siblings. I decided I am fine and I think it has helped me a lot Woman 11).
Sexuality
Some of the women had a negative perception about their bodies and this affected their desire for intimacy. The study revealed that there were challenges for women in terms of sexuality for various reasons. For example, some of the women feel rejected by their partners because of their condition although they have the desire and others feel they have lost their femininity.
…No sex after the operation. I think it is because of the operation, also we are many (referring to her rivals). I have feelings for sex but my husband showed no interest… (Woman 13).
At times I will have the feeling for sex but, I will be thinking of how to manage myself and have sex, I will feel shy lying down with one breast… (Woman 3).
I ask myself if I am a woman again to my husband. I cried the first time we had sex because he loves sucking my breast. And now it was one breast, he could not even touch the other one so after sex we will cry… (Woman 1).
Some of the women were feeling bad about themselves and did not want to undress before their partners. Some also cover the mastectomy site during sexual intercourse.
…I felt bad the first time for sex after the operation. I did not want to undress but my husband said he could play with the one. I was afraid that maybe my husband will leave me… (Woman 5).
Other women have not attempted for various reasons. For instance, someone feels the husband will hurt her and one woman has not gone to the husband’s house after the operation. Another woman also said she did not want the husband to see the mastectomy site and mock her.
I have not had any sexual relations with my husband because I have not gone home. I am in my mother’s house (Woman 8).
…. I have not had sex because I feel shy having one breast, I feel incomplete to stand in front of my husband …..(Woman 3).
We still have feelings for each other but we have never done it after the operation. Because I am sick and I am afraid he will hurt me… (Woman 2).
After the operation, I decided not to sleep with him, because I did not want him to see it and mock me or do something that will hurt me… (Woman 10).
One of the women is not having a partner and she sometimes feels she needs a man to be with but thinks she cannot go into a relationship.
Even with two breasts, a man will not stay with me how much more having one breast? I isolated myself from womanhood after the operation. However, as a young woman, sometimes I feel for a man but I cannot go into a relationship with one breast… (Woman 6).
Economic experiences of women post mastectomy
The study revealed that most of the women experienced economic hardship during and after their treatment. The hardship extended to their families because some were breadwinners of their families. Some of the women lost their jobs. Businesses of other women collapsed because they diverted the money to their treatment. It was also evidenced that the high cost of treatment placed a huge financial burden on them and their families.
Employment
The majority of the women were self-employed. The disease and the treatment have had an economic impact on most of the women. This ranges from their inability to trade and using their capital as sources of finance for treatment.
…My business has been affected greatly. I am unable to do much and most of my money has gone into the treatment. My business has collapsed… (Woman 8).
…It affected my work, the treatment cost is expensive. When I came back to work, all my stock had run out. I had two shops and I had to close one down… (Woman 10).
A lot!!!, I was a trader after retiring as a teacher. I travel to Togo, Accra to buy goods. After the operation, I cannot move for a mile, not even to market. I have locked my store. I am no longer doing anything… (Woman 14).
Some of the women in the formal sector lost their job.
Through the chemo, we used to go every month. I will have to write to my boss so sometimes it is as if they are fed-up with excuses. After the operation, I came and they said they have taken somebody…. (Woman 1).
…..I lost my job right after the operation because my hand was swollen after the operation and I could not work … (Woman 7).
The study established that some of the women are breadwinners for their families. One of the women had just resumed her petty trading in sandals that was her business before the surgery. The business happens to be a family source of income.
…I have now started selling the sandals, this has been my business. Our only source of income. I used to also prepare Sobolo and Zimkom (locally made soft drinks) to sell but because of pain, I cannot do it again… (Woman 2).
Another woman has not resumed her work at all although she is a breadwinner.
Madam, I am a breadwinner in my family, I used to sell my banku with tilapia. I stopped after the operation because of my hand pain. So, for now, I want to pause… (Woman 6).
One woman has been relieved from her duties.
…I do not work in my community. They have left me free since 2017 up to date. I choose what I want to do… (Woman 15).
Financial burden
Almost all the women were complaining about the high cost of treatment and the burden it has placed on them and their families. Some of them have to change their children’s school so that the fees will be reduced to meet the challenges of the family. Some families were frustrated about the cost involved in the treatment. The cost was unbearable to the extent some were selling their properties, closing down shops, and taking loans to take care of themselves.
It affected the family!!!! I changed my children's school because of money. After the operation, I still have to go for the chemo four times. My husband could not pay his fees again so he has to stop his school… (Woman 5).
It affected me. My mom is a farmer and very old, she sends all the proceeds from the farm products to me. My husband does the same, his comments sometimes make me feel he is exhausted with the burden on his finances. I think they are tired of me… (Woman 8).
My family supported me, they were there for me, friends, and some students that I taught. I went in for a loan to take care of myself also. At a time, I sold my car to support…. (Woman 14).
Some of the women were also leaving on the benevolence of others since their families were poor and could not helpfully.
Oh, it is not easy. This sickness carries a whole lot of money. The expense alone in this sickness is not easy. Family members have been helping me, loved ones, and friends as well. I come from a very poor family. It is not easy for me… (Woman 11).
As for finances, it is not easy!!!!! Financially by God's grace, my in-law has been supporting small, small (Woman 6).
The data revealed that one woman has defaulted in her treatment plan and there is nothing she can do about it again. The family has exhausted their money on her treatment because she was non-insured. The burden has even affected the feeding of the family.
…I needed laboratory investigations but my husband did not have money. My treatment has consumed a lot of money because I did not have health insurance. I do not have money for any treatment anywhere… (Woman 2).
Yes, it affected the family, no money again. It is only God who knows how we feed in this house. My husband lost his job so there is no support anywhere for me. We feed on sales from the sandals I sell… ( Woman 15).