Beyond the Surface: Recovering Me and My Sex – Supporting Sexuality and Self Esteem in Women Post Cervical Cancer Treatment

Q&A with Karen Nakawala Chilowa

What does success look like for you in the context of this project? How do you think the impact of your project will evolve over time?
What success looks like for us as Teal Sisters Foundation in the context of this project is being able to have conversations with survivors that are typically taboo in our setting. Discussing sexuality after treatment is unheard of because women are often expected to simply move forward with very little or no support and to resume normal lives after treatment. This is difficult due to the nature of the disease, its treatment, and the subsequent side effects. All of this is compounded by the stigma, myths, and misconceptions that especially shroud gynecological cancers. So, success for us means breaking down this barrier and giving women the voice, courage, and space to have courageous conversations.

What results were you able to produce with the funding you received? What are some measurable impacts of diversity and inclusion within your community? 

With the funding received, we were able to host three workshops:

1. The first workshop was for 35 survivors only, which enabled us to conduct a baseline study and have honest conversations amongst ourselves. This helped us identify practical ways to support our sexuality needs and self-esteem in a bid to improve our quality of life as survivors, purely based on lived experience.
2. The second workshop was held with survivors and doctors to gain expert opinions and learn more about available treatment options, their side effects, and how these side effects can be managed.
3. The third workshop was held with survivors, healthcare providers, and the social welfare department. We focused on the relationship between healthcare providers and patients and the kinds of support they can offer survivors and patients. The social welfare team addressed managing emotions, body changes, and communication between survivors and their partners, in the hope that improved communication will ease the pressure surrounding sexuality and intimacy.

From these workshops, the survivors decided to launch the Zambian Cancer Survivors Support Network. The initiative has reached an advanced stage and is awaiting official launch by the Ministry of Health.

The survivors also developed a survivor’s toolkit on managing sexuality, intimacy, and self-esteem post-treatment titled Sister to Sister: A Guide to Sexuality, Intimacy, and Self-Esteem After Cancer Treatment. The booklet has since been submitted to the Ministry for approval and is awaiting publication.

How did your project contribute to the goals of equity, diversity, and inclusion, and how has your perspective evolved as a result of this work?
Our project contributed to the goals of equity, diversity, and inclusion by centering and amplifying the voices of people who are usually not heard and by addressing a topic many are reluctant to discuss: sex. After treatment, there is often an assumption that survivors are fine simply because they are alive, but life after cancer is profoundly different, and the quality of that life matters just as much as survival. Through this project, the unheard have been heard, and the unseen have been seen.

How do you plan to sustain the impact of your project after the funding has ended?
We hope to sustain the impact through our survivors’ toolkit and the Zambian Cancer Survivors Support Network, where these conversations will continue.

Are there any future projects or initiatives that you are planning as a result of this work?
Yes, more workshops for those coming out of treatment and continuous meetings with older survivors to ensure continuity.

What advice would you give to others who are seeking to create impactful projects with EDI funding?
Learn to do what you can with what you have. Do not try to overachieve, but maintain a one-person-at-a-time mindset, and you will be amazed at the ripple effect and how many people you will touch and help in the end. Be able to adapt to change and always be aware of your environment.