Losing the Mental Battle

Flowers from my boys

6-30-23

My breast cancer surgery finally happened on Monday, 6-26-23. I should be happy. I should be relieved. This whole process has been the most frustrating and awful experience of my life. From the "it's early, you are lucky and will be fine" to the too LONG wait for surgery because "there are more important people in front of me" and doctors have to take vacations to the day of surgery and not knowing if insurance was going to pay for part of it and just how much this is all going to cost.

Communications from doctor's offices are awful. It's been 4 days later and I still don't know, did they get all the cancer out with clear margins? how many lymph nodes did they take to test? Doctor was hoping the pathology would be back by today (since next week is a holiday) but it's after 5 and I haven't heard anything so I'm not hopeful. 

The first nurse I had after my surgery was absolutely awful. She was a mix of nervousness and ignorance that should not be allowed near patients. I was so nauseous from the anesthesia. She said there was a better medicine I could have but they couldn't put it in my regular IV. They would have to find another line. Also, it could turn my hand black if they did it wrong (I'm sorry, what? Oh yeah, sign me up for that, then). She couldn't find a vein so she got these vein specialists to come and they scanned my arms and told me there weren't any good ones, so tough luck. It's not exactly the experience you want to have when you are feeling so bad already. Luckily, the next nurse that took over restored my faith in nurses. She was able to get a line the first time, it didn't really hurt even. She couldn't believe the things the other lady told me and laughed about the black hand part. I told her I didn't want to leave with a hand like Dumbledore. 

Discharge was awful. Second surgeon didn't show up until 7pm or even after. Didn't even check my wounds and said if you want to go home, I can make it happen. Apparently, he didn't tell the nurses though. When they finally caught on (Oh, he's discharging you for tonight??), it was long drawn out process because the meds he called in for me, 1 was out of stock and then he didn't even call in one I asked him for (which never got done). So, they had to get all that figured out. It took hours while I sat there in limbo not knowing what was going on. They tried giving the best discharge instructions but they were basic, at best and also contradictory (take a shower in 3 days vs don't take a shower until your drains come out). Clear as mud. I HATE the drains. They are probably the worst post op thing I've ever had to deal with. I'm still so unsure about the dressings. They said I could change them but when I looked today to do that, it seemed like an insurmountable task. So many bandages with so much tape and I'm not even sure I have enough supplies. (Oh sweet Jesus, what has been done). And to do it without disturbing the drains seems very unlikely. My follow up appointment where they hopefully will remove drains is not till next Wednesday because of the holiday and I am dreading the next 5 days more than any I ever have. 

I stopped taking the pain meds late Wednesday because I hated the way they made me feel. Like I wasn't even here and all I did was sleep. But now, I can't sleep at all. Not because of pain but my insomnia is the worst it's ever been and I'm losing my mind half the time. There's nothing to do. I am tired but can't go to sleep. When I do doze off, I have the weirdest dreams.

My mental state is the worst it's been in this journey. I am a mess. Everyday seems like a chore. Everything seems so hard. And after these next 2 to 3 weeks, guess what? I am finally graced with an oncologist's presence so I can do more great things, like radiation! And then, I get to take some pill that destroys some people's lives with side effects for 5 years! Oh, yay!

I don't want to. I didn't ask for this. I never wanted any of this. And I cannot express to you the immense feelings of loneliness. And it's not because people are not there. I had people there with me and have people around me now and many checking in. But they don't get it. If they've never gone through it, they don't and won't understand. It's so hard to process and explain and by the time you do process one thing, the moment has passed and nothing makes sense again. The next 2 months just seem so bleak to me. I know there are good things but I don't see them right now. All I see is dread, fear, and exhaustion that knows no bounds. Maybe a long time from now, I will be grateful for this time in my life. But that time is not now.

Because I don't want to end this on such a terrible thought, I will talk about two bright spots this week. There is a hockey mom I met a little while back. Our sons have done things together here and there but they do not play on the same teams. She took it upon herself to make sure she knew when my surgery was and when she could deliver us some food. Turns out it was exactly what we needed when we needed it. I am so thankful I didn't have to worry about my family eating on top of everything I was experiencing. She doesn't even know me that well and doesn't live close by. But she is an angel and her act of kindness was so appreciated!

The other bright spot was the second nurse I had. She was amazing. She restored my faith in nurses that night and I'm not even joking. She was kind and gentle (like her name, Gentille). And knew what she was doing. She was also the nurse at discharge and she said I was one of her favorite patients and was sad to see me go. I wouldn't have minded to spend the night in her care, honestly. But, I also did want to go home and not be hooked up to so many things (and to not have to pay for another night of services!).

Anyway, I'm sorry for all the negativeness. I hope by venting and getting some of it out, it will help me move forward even if only just to sleep better tonight.