When you are finished with the acute treatment for breast cancer, the doctors talk about the difficult time you will have. They talk about how it is related to all the attention you get from your care providers during the acute treatment stage. Then suddenly, you are set free and feel somewhat abandoned. I definitely felt that way. However, I think that was the easy part. I found other healthcare providers to help keep me on track – I was never really left without them – I just see different people now. So instead of weekly visits with the infusion nurses, I have weekly visits with a physiotherapist.

So, although abandonment is part of what creates the down/depressions after acute treatment, that is only a small part of it. Our healthcare providers are missing something big here – in that they are looking at the problem from a healthcare provider centric view and not from a patient point of view. From their view, they see patients feeling abandoned. They don’t seen the internal struggles that patients are facing.

Early in my cancer journey, I wrote asking How does one prepare to lose a body part? In truth, you prepare by trying to be strong when you go into surgery, but also giving yourself permission not to be. Since I did chemotherapy first, I had a lot of time to prepare myself for the surgery. By the time surgery came, it wasn’t scary anymore. I knew what to expect. I had done my research. I was OK with it all.

What I couldn’t prepare for was the sense of loss that comes with losing a body part. It doesn’t come right away. During acute treatment you are focused on getting done what needs to be done and staying alive. After that, you become focused on regaining your strength, and on letting the physical wounds heal. It isn’t until you start to reclaim portions of your old life that the loss really starts to sink in. It is then that you really start to internalize what has changed.

So for me, today, I miss my nipples. I had a nipple sparing bilateral mastectomy with immediate DIEP flap reconstruction. That means, that I actually have my nipples. When I look in the mirror, they look like my nipples (mostly – they are scared and have faded and flattened). But they are also dead nipples. My reconstructed breasts have no sensation. My nipples no longer react to stimulation – they are dead inside – they only exist for cosmetic purposes. Don’t get me wrong, I’m thankful to have them – and to be able to look in the mirror and see my nipples and not some empty stomach tissue or some reconstruction of a nipple – but I am sad at the loss of sensation. I miss it. And it is this type of loss that doesn’t really sink in until you start reclaiming your old life. Until things start to get back to normal, and then you discover some little (or not so little) thing that cancer has taken away from you. And that is what makes survivorship so hard. It isn’t the abandonment from your doctors, it is those times when you realize just how much you have lost.