So as anyone reading this blog will know im undergoing treatments for both stage four endometriosis and a form of clear cell carcinoma that comes from rare carcinogenic mutations of endometrioid lesions. The side effects and experiences has been trying. I’ve learning a lot both good and bad and want to share. I hope this will help those who are going through treatments to feel that they are not alone and those who know people going through long term treatments to understand some of the underlying feelings.
People will call you strong
Most the time this is a very welcome complement but other times you’ll wanna slap the person in the face and yell ” well I didn’t really have a choice did I?” but… most the time it’s appreciated. So if your someone trying to say something to help a friend go ahead and say it…
You will have a greater outpouring of compassion then ever before
This has been one of the things that keeps me going. I have had friends I lost connection with years ago contact me, I have had acquaintances I barely know offer to pay for treatments, buy me wigs, fly out and stay with me, or go to treatments with me. I have had strangers tell me my story has pushed them to get help or inspired them and asked if they could share about my journey. I have gotten cards, gifts, flowers, and money. I have been humbled beyond belief to see how many people care. I would never have never experienced this otherwise. And it really does help. So people… write that letter, give that gift, send that email or private message etc…. it’s not weird. You may hardly know the person. No grand gesture needed… but knowing people care is so so so powerful!
People will surprise you
People you would have thought would be the ones there for you every step of the way will fall to the back burner. Some will shock you with their lack of support and empathy. And it will hurt… deeply. You will feel as though you’ve been led to believe a lie and that they really don’t care for you as much as you had thought. Just remember…they usually can’t fathom the consequences of their action or may not even realize their actions at all. They are fighting their own battles and just don’t have the energy for you. Don’t take it personal. It is about them, not you. Others will step up. People you probably didn’t expect… I have had 3 in particular. Who went/go above and beyond to show they care. They are purposeful about checking in and keeping an eye on me. They notice when I grimace or when I leave the room quickly cause my meal isn’t sitting. They remind others what I am going through when they are being demanding. They push me to take care of myself when I am trying to power through like nothing is happening. People like these will touch you deeply and you will grow closer to them then you ever would have if you stayed healthy. They are your heros. The ones that keep you going.
You will get mad at stupid things
You’ll get mad because a friend is telling you about their plans through text and you know your gonna be home trying to decide if you have the energy to make yourself dinner or if your gonna go another night without cause you don’t have the energy to stand up one minute longer. Then you will get mad at yourself for being mad at your friend cause you know its not their fault and you’re being ridiculous. You’ll be mad because getting up in the morning is really hard and that just pisses you off. You’ll get mad cause someone says the wrong thing when trying to comfort you. You’ll get mad when someone doesn’t say something. You’ll get mad that you have to work. And you’ll get mad when people ask you why you don’t take time off. You’ll get mad at your dog for needing to pee when you don’t want to go outside any more. You’ll get mad at the dishes for needing done, or your body for hurting. It’s okay… be mad… but be mad alone… These feelings will pass but things said when your mad won’t go away. If you are mad excuse yourself from the room or conversation and revisit the situation when your level headed. Scream in your pillow or into the wind… not at people.
You will beat yourself up
You’ll get frustrated that your not stronger. You will compare yourself to others who have it worse then you and you’ll feel guilty. Then you’ll get mad at yourself for being too strong… for pushing through the pain and then getting home and being completely overwhelmed with exhaustion and pain. You’ll be mad that you didn’t appreciate your healthy body more. You’ll get anxiety about how you should exercise, or meal prep, or get that last task done but you just can’t… So you beat yourself up. You’ll stress yourself out. You’ll feel like your failing. When this happens remember… your treatments are temporary and terrible… it is okay to fail a little here and there.
You will find joy in things you’ve never noticed before
Perhaps it’s the drug induced emotions… but I think there is more to it. I have found myself moved to tears at little things I took for granted before. Someone offering a helping hand, my understanding co-workers, the blessings of being able to do what I love for a living, having the financial stability to buy a comfy couch, the smell of the air after in rains, my horses trotting to great me, people caring about me for no reason other then the fact they just do, God’s power and love for me, health insurance, family, the story’s others share with me… Ist like all of this has made me stronger yet softer. Perhaps it is because physically I am forced to slow down so I take more in, or maybe it’s because this could have killed me and that makes the blessing of life a little sweeter idk… but it is a blessing all the same…
You can function at a point of exhaustion you never thought possible
My symptoms are long and ongoing. My idea of “good” has changed. People ask how I am and I say good if I didn’t throw up in the morning, I have a headache instead of a migraine, and my body only hurts when I am moving. And that becomes okayish. I’ve learned to cope with that and that has made me both stronger and more compassionate to others.
People will try to compare their stories to you
Unless you have experienced exactly what I have just stop. People will try to compare whatever illnesses and ailments they have ever had to mine. Even if this comes from a place of wanting to show you understand most the time its destructive. Don’t compare your pain ever! You have no idea what I am going through or how I feel. You have no idea whose pain is/was worse and frankly it doesn’t matter whos was “worse”. Trying to compare often gives the impression of trying to one up the person your comparing to. This only makes the person who is currently struggling feel weak and like they have to justify feeling like crap. Like they should be stronger cause they could have it worse… trust me… everyone struggling with any kind of pain already compares themselves to others enough. Every warriors beats themselves up for not being stronger… don’t add to it. There is a right way to share your advice based on your experience… Do it at a completely separate time. Not after the person who is struggling just told you how shitty they feel. Be sure to emphasise that you don’t know exactly what the other person is feeling but that you experienced ______ and ______ helped you and you wanted to share just in case they’d be interested in trying. If you aren’t coming from a place of trying to share something to ease a struggle don’t share. Don’t compare. I had a wonderful women who also had cancer send me a long email about things that helped her. She shared her tips and experience but never one upped my situation, told me it would get better, or it could be worse. She simply shared what helped her. That is constructive sharing… It is not constructive to ask someone how there feeling then respond “yea, I am ___ too” or “Yea, I feel like that all the time” cause… you don’t. Everyone is different and you have no idea how I’m feeling. I have done this to others and never really realized how destructive it can be till I was on the receiving end to such an extreme. It really sucks.
You will enjoy parts of the journey and that will surprise you
Some of this has been listed above… but through your recovery you will be poured into, you will have opportunities you never did when you were healthy, you will appreciate the little things more… Treasure this, milk it for all its worth… take the time it takes to smell the rain. Let yourself be loved on. These become your “reason” for the journey… your silver lining…. take it all in.
Being strong sucks
If your like me, rolling over and quitting life for the duration of your treatments isn’t an option. So you get stronger. You grit your teeth and smile. You cry only when no one is around. You stand up straight when people are looking but gimp as soon as they turn around. You rally at the expense of your body. You put on a great show so people don’t take it easy on you. People expect you to carry on like you did before treatments. They forget what your going through. And it is exhausting… Living the same life as before with half the energy and immense pain. It’s like you get punished for being strong. People stop trying to help or don’t look any further. So for those of you who know someone going through rough seas… just cause they act okay doesn’t mean they are. Still offer help, still be understanding, still check in, being strong is much harder than being weak… support them. They deserve it even if they don’t ask.
You’ll cry…. alot
I am not really a cryer… but… well maybe I am now… I cry because something went well, or cause I’m thinking about how much I care about something, or cause I’m hurting, or cause I’m mad… who knew one person could cry so much…. but I don’t mind… seems there is something healing about tears.
You will feel extremely lonely
This has been one of the biggest kickers for me! During the day I charge full force ahead. I don’t let myself dwell on the the pain or emotions. I can’t… I would fall apart. So I fly through the day like nothing is going on. Then when I’m done around 7 I collapse on the couch or in bed. Everything comes flooding in. I often hardly have the energy to make dinner or turn on the tv much less to reply to texts or phone calls as much as I appreciate them. So I sit there tired and lonely. Wishing I had someone just to sit with… but back to that being strong sucks things… I don’t want to impose or ask for company cause I know people can only give so much so I sit… I pray… and some days that really helps… others I still feel lonely. I suppose that’s part of this. So if your someone who knows a person struggling… particularly one whos normally an extrovert. Ask them if they like would like company some time ahead of time… then be in tuned… if you know them well enough and if it seems like they have had a tough day text them that your coming over unless they don’t want company… then just show up. Worse thing they can do is tell you no when you get there. Then just sit with them. turn on the tv or read a book. Maybe start a load of laundry or do dishes if it looks needed. This is really for those of you who are close to the person. If your not close and feel like they may feel the need to entertain you or not tell you if they need alone time proceed with caution.
Everyone will ask you how they can help
It is something everyone says when they don’t know what to say. It is confusing because you don’t know who means it and who doesn’t. Some people say it but if you ask they will feel imposed upon. Others mean it… but typically cause you don’t know who is who you don’t ever ask for help. So for those of you who mean it try being more specific. “would you like help with chores today?” “Do you have any laundry that needs done?” “Do you have meals for the week?” for those of you not close enough for that kind of stuff “are there any care products you are running low on I could order for you?” “What can I pray for you about” “Do you have any emails or papers I could scribe for you over the phone?” etc etc
You will inspire people
Your actions will be magnified and you will be given a platform to share advise, hope, and love. Watch your step… you could be changing people’s lives. Take this on with power and courage, you will become an inspiration. Fight the good fight how ever you can and you never know whos life you’ll change because of it. What great power and opportunity. Use it wisely.