I am sitting at my desk and checking my mail, and it’s been six years since I was diagnosed with breast cancer. A lot has happened since then, and I can tell you for free that an invaluable gift that money cannot buy is mental and emotional support.
Call me dramatic because I can be. Breast cancer is a traumatic experience with a lot of mind and body experiences so I expected compassion and empathy. I felt I would be treated like a long-lost princess by my family.
I did get compassion, because cancer is associated with death, but empathy is another thing — especially after I finished treatment. People forget and make assumptions that the journey is over. People stop being nice. I wish I could understand it, but I don’t, and hey, life must go on for those around you.
People are kind on social media probably because they are somewhat connected to cancer in one way or the other, so when I started sharing my journey, it felt nice getting messages of encouragement, especially on days that were not so good. But offline, things are different, especially around friends and family.
I have come to realise that there is financial and emotional support, and it’s difficult to tell you which keeps one from dying or gives hope. Or is it a case of needing one more than the other at various stages of the journey?
During treatment, financial support was important and welcomed, but after treatment, I realised that emotional support was (and is) necessary. That is where empathy comes in. People don’t understand life after cancer. In the first six months to a year, you have a few folks trying to follow up and concerned about your eating habits — note I said eating habits and not necessarily about self-care, which includes mental and emotional. I don’t remember anyone asking how I felt after my treatment and surgery.
Let’s backtrack to pre-surgery, no one asked me if I was stressed and anxious. I didn’t know anything about support groups before I started the journey, but after six years in advocacy, I realise that most women in support groups are just there to ask about food and to get out of paying for consultations by asking questions within the group. Harsh, but true.
Psychosocial support isn’t really understood where I come from in Nigeria; maybe its because people still don’t understand the seriousness of the disease or cancer is just lumped up with every other thing, so its just an ailment and you should be better after treatment.
A likely scenario for me is being told, “I thought you said you have finished treatment, so what is the problem?” How do you explain or start educating people when you are asked that question?
I thought I would be treated with some degree of empathy after I was done with treatment, but to my greatest shock, everyone treats and acts like I never even had cancer. How do you make them understand that you will always have side effects, the manageable and not-so-manageable ones? How do you explain the fear that comes when you hear a breastie (breast cancer survivor) you knew has died?
You are not even allowed to express any fear without someone reminding you to be grateful to be alive.
Maybe the initial burst of adrenalin after treatment made life after breast cancer seem like a breeze, but now I find out that I am struggling. I now advocate for therapy before and after treatment. I am struggling to be heard when I complain that my surgery site hurts, especially after strenuous activities. I am struggling to keep up with my voice in getting people to understand the need for psychosocial support, and there is the unspoken fear of recurrence, especially when the body is constantly in stress mode. I am struggling to find work that doesn’t physically drain me; fatigue is real.
People around me seem to want to support on their own terms and what I want is different from what I need.
I will advocate for mental health care in 2023. I have been depressed for almost a year now and didn’t realise it. The constant crying anywhere for no reason was one clue, amongst other things.
Social media has been good for my mental health, as I have come across a lot of resources that help me cope, even though I know that I need more than that as support. My stress and anxiety levels were high. Support after breast cancer is important. I started therapy and these are a few things I have realised, the worst thing that can happen to you during therapy is to have someone who isn’t a right fit. Physical and psychological impacts of trauma have a subtle effect on our quality of life. PTSD is real.
Six years after breast cancer and I am more confused than ever, but I cling on to hope because in getting answers, if I seek, I will find and in finding, I will get my groove back.
This post was written and submitted by Ngozi Ejedimu. The article reflects the views of Ngozi Ejedimu and not of CURE®. This is also not supposed to be intended as medical advice.
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