But You Look So Well!

It's Monday, and I was meant to be having my PET scan today. That did not happen. Why? Because I feel awful, I'm tired, worn out, and yet, I haven't been doing anything differently; in fact, I have even been taking my own advice and have been resting.

Welcome to my "new normal"

I say new normal, and yet it's been over a year since I have had any treatment. "So why do I feel like this still?" I'm sure you have asked yourself the same question at some point on this journey. And perhaps you are like me too, and having bladder cancer has caused more health problems, more struggles on a daily basis.

You can tell yourself all the time that you "will listen to your body," but do you actually listen? I know that I don't. I know that I push myself daily regardless of how I am feeling. Why? Because I feel guilty. I feel guilty that my husband goes out and does a 10-12 hour day and still comes home and cooks dinner when I feel rough. I feel guilty that he cleans the house when I can't move from the sofa. I feel guilty for all the worries and pressure he feels because of my cancer.

I think I should be able to do more

Guilty because even I think I should be able to do more than I actually do. For every good day, every late night, it takes me days to recover. I don't want to be confined to my house; I want to live and I know that I have to try and balance everything better. But do I? No, because on the good days, I rush around trying to get everything done that I want to do. I rush around making appointments, writing blogs, catching up with friends. I fill my days because I don't know when the next good day is coming.

There is nothing more satisfying than feeling "accomplished," feeling like the day wasn't a waste of breath or time, and I guess there is still a part of me that doesn't believe all this is actually happening. I give myself "talks" throughout the day: "Get a grip," "What's the matter with you now?" "Come on you can do this," "Don't give up; you are nearly done". This pushes me on. It also makes me sad as I realize that I don't like this new normal. Not one bit.

It isn't the cancer bit

It isn't the cancer bit, it's the bit that leaves me breathless when walking up the stairs. It's the bit that I find frustrating when I can feel the strength leaving my body as I'm halfway through doing something. It's apologizing to my dear friends when I have to cut a night out short due to feeling tired.

You see, when treatment stops and life goes on, your life doesn't go "back to normal." You may find yourself wondering where you fit in, and when you do find somewhere to fit, you may find, just like me, that it's hard and exhausting trying to live your life as you once had.

"You look so well"

You pop out to the shops, using all your energy and hoping that you won't bump into anyone as you really don't feel like chatting this morning. Of course, you see someone you haven't seen for a while, and the first words that come of their mouths are, "You look so well." I want to scream at them as I politely smile and say I'm doing as well as I can be.

You see, they think once treatment is over that everything will just "click" back into place, that you will be the same old friend as you have always been. They don't understand fatigue, they don't understand that you have pains, or that you can't walk as fast as them because of a chemo-related illness. They have no understanding of what you and your body, mind, and soul, have gone through. You can't just click your fingers and "get over cancer."

How could you not change?

You have grown; you have changed into a different person, how could you not change? You may find things not as important as before, as I have found that cancer stripped away the drama and the negativity from my life, whereas your friends don't understand this either. You have strength, you have faced one of the worst things in life and are still here, how could that not change you?

You are a different person now to the one that started this journey. You will have scars, mental and maybe physical ones, too. Your journey may not even be over. It may just be "paused" for now.

I tell myself every night that tomorrow is a new day and I will feel better after a good night's sleep. I don't ever get it. I know that I now don't get up 37 gazillion times a night for a pee, but I am aware of my night bag. I am aware that I toss and turn in bed, sometimes I have pulled the night bag attachment out when I have turned over. Or I have found that the bag gets twisted as fills up with urine and bursts. So you see, I don't think I ever sleep really well.

I am here

However, I am alive, I am here, living and breathing and helping to support others on this journey as well as promoting awareness where and when I can. It's just that the new normal is taking some time to get used to.