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Writer's pictureDonna McMillan

Expectations and Reality After Cancer - by Donna McMillan


Donna McMillan, an ovarian cancer patient

Donna is a former Hospice Social Worker, a former Elder Law Attorney, and an ovarian cancer survivor. Check out her website: www.survivingtoflourishing.net

When I completed my cancer treatment, I expected myself to return to normal fairly quickly.


I was quite surprised when that didn’t happen. What did happen was that I improved slowly over time, but I have never returned to what was my old normal. I have had to adjust myself to this new normal even though I didn’t know what that new normal looked like because it kept changing as my body was healing from treatment.

Learning about your needs


I was not the only one that had a challenging time adjusting to the new normal, those around me had a challenging time adjusting too. See, the further away I was from treatment, the more other people expected me to be able to do things the way that I used to do them. But often, I couldn’t do it and didn’t even know it until I got into situations that I couldn’t handle. Like the time I went on a Ranger led hike in a State Park only to have a complete ugly meltdown because I couldn’t keep up. So how do you take care of yourself when you don’t know what your needs are and what you can do and can’t do, and how do you express those needs to others?


So not only you but also the others around you, expect you to be like your old self


One of the difficulties in the after cancer is that you start to look like your old self. So not only you but also the others around you, expect you to be like your old self. But we all know in life that how we appear on the outside can be very different from how we feel on the inside, both physically and emotionally, and that is not truer than in the after cancer.


You need to figure out your limitations


The first part of aligning your expectations with the reality of what your abilities are at this moment in time is trying to figure out your limitations. I had to learn that I COULD do a hike in a State Park, but probably not with a Ranger or a group of others because I needed to go slower and take more frequent breaks than most people. My husband had to learn that my not answering a question immediately did not mean that I wasn’t listening or didn’t hear him. Sometimes, especially when I was tired, I needed time to either process what he was saying or to find the words to express my answer. It took and still takes patience on both of our parts.


Communicating ahead of time can help keep expectations in check


Now there were and are times that I didn’t know what to expect or what I was capable of, so it was difficult to directly and specifically express my needs to others. For instance, I would respond quickly with a “Yes!” when invited to something, only to realize when the time came that I was having a really bad day, or I was too fatigued to participate. Then comes the difficult part of telling people you aren’t joining them after all. It can cause hard feelings if they don’t know the reason has to do with your recovery, not them.


Tell people about your recovery and set expectations


I have found, and sometimes forget, that communicating that you still have trouble with fatigue or your recovery or whatever it is that you are having trouble with and that you hope to join or attend but cannot firmly commit, can spare both hard feelings and your own feelings of low self-worth and disappointment. Share as much or as little information as you feel comfortable sharing. Not everyone needs to know exactly everything about your journey and directly communicating your needs does make you vulnerable. But that vulnerability also makes you real. Realness ultimately helps you connect with others. And we do need others in so many different ways to help us get through this journey.


We sometimes forget that we don’t owe an explanation to everyone


For me, when invited somewhere, there is also the anxiety about how my verbal communication will come across. Sometimes I use the wrong word, or I can’t find the word I am looking for at all. Or I lose my train of thought mid-sentence. It can stop conversation in its track and make me and the other person uncomfortable. Once I realized this was happening my initial reaction was to not to attend events and to politely decline invitations. What has been healthier for me, however, has been to dip my toes in the water slowly. Join small groups for a limited periods of time with people I trust and see how it goes. I also try and let people know that I may have to leave early. This has helped me regain my confidence and realize that most of the time now, I can do okay. The verbal difficulty shows up more often when I am tired, so I try to mitigate that by making sure I am rested before events. Over time this has helped me to become more open to joining others. But it has been a process and that process has been difficult for me to communicate to others that I am not intimately familiar with. So sometimes, still, it’s a polite, “No thank you”. Period. We sometimes forget that we don’t owe an explanation to everyone. And those who know us will understand.


A new normal


Adjusting to the new normal after cancer can present so many challenges, not the least of which is that new normal is fluid and changes as we get stronger and learn our limitations. Managing expectations and reality requires you to have patience with yourself but also that our family, friends, and loved ones also have patience with us as we navigate the after cancer. While we don’t always like to admit our limitations, communication is the key to managing expectations, avoiding hurt feelings and disappointment, and learning and accepting what our life looks like now.


 

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