I have a lot of images to share of the christmas like homecoming I had yesterday to all of the amazingly thoughtful and helpful things you all sent, but I’m going to stick to words for today because they’re less complicated and I just got out of the hospital. Cool?
So part of the reason I’m writing this is to help people understand what the experience is like and so anyone else going through this can compare and that means today there’s some gruesome detail in here. Don’t say you weren’t warned. But then again you are reading a blog about cancer treatment, so hopefully you weren’t expecting puppies and rainbows.
I’m going to start in the past because it’s easier to write about things from a couple of days ago to give me time to process what’s happened today. I’m on the most unfun roller-coaster ever. It’s physical and mental too so sometimes I hurt, sometimes I’m ok, sometimes I’m the angriest I’ve ever been or sobbing, and sometimes I’m laughing or calm. Some of it is tied to when I’ve taken medication and some of it is is based on physical activity and just having a lot to process so it’s hard to keep track of. A., Mom, and Dad are also being champions in staying calm in their dealings with hurricane cancer.
I am home from the hospital, I got back yesterday and I’m doing ok. Managed to take sort of a shower today so that was something. Pain is manageable and I’m in good, if not professional, hands here. A. and I even managed to sleep in the same bed last night without him accidentally maiming me or me keeping him awake all night. I was nervous about trying, but I decided I was more freaked out about being alone. My big mental issue right now is being afraid of being along which is a new one for me and challenging now that I’m out of the hospital. It’s not that I’m afraid of anything concrete happening, it’s a more abstract fear which makes it harder to combat.
Alrighty so here are Hospital Diaries 1, starting on Monday the 25th.
Sunday night I think I did a pretty good job of spending time with my family and making some phone calls to people and not too much time crying. I was trying to wrap up my affairs and I really didn’t want to spend the night crying, because it was the last one I’d feel relatively normal for a while and that seemed like such a shitty way to spend it. I thought about writing A, Mom, and Dad letters to read while I was in surgery, but was afraid it might be sort of morbid and would be hard on me to write. Monday A. and I headed to the hospital in our car and Mom and Dad drove separately. The plan was for A. to stay with me, so he needed a separate vehicle. I can’t remember what music I put on, other than I think it was pretty random. We got to the hospital and I checked in and let them know my preference was for a private room which they acted like wasn’t a crazy thing to request (relevant later).
After being in the waiting room for a bit they called me in. I started walking in and then realized this was probably my last chance for hugs for a while so scooted back and hugged Mom and Dad. Mom wore my pirate socks from Aunty Babs, Dad had on my necklace from Ashley, Anton had my shirt on from Aunt Tricia, and I had my BSSP shirt on for pirate solidarity.
The before surgery time was like night and day in terms of my experience compared to the Monday before. The guy doing my IV looked at me like I had two heads when I told him I preferred not to get lidocaine in my hand before the IV needle because it hurt more, so I figured he was the expert and let him just do it. It didn’t hurt at all and he got it in one try (compared to this). Very suspicious of my previous Monday IV people now. I had a lot more people coming in to introduce themselves which helped not have too much downtime to get scared. I still was at times, but spent a lot less time in tears. I also had a playlist I made at my Mom’s suggestion called “Courage” that I listened throughout with A.: XO by Beyonce, I’d Do Anything for Love by Meatloaf, You’re My Home by Billy Joel, When I Leave for California by William Walter etc, Hair by Lady Gaga, All These Things by Aaron Neville, and Your Man by Josh Turner. Meatloaf was the best pick because A. and I were laughing and rock operaing along to it. They couldn’t let me wear my wedding ring in surgery this time because they pump you full of more fluids for the longer surgery which can cause your hands to swell. I tried not to dwell on it, but it did freak me out a little to lose my only talisman. A. put it on his pinky so it was next to his and that reassured me a bit.
Before I knew it, it was time to go and my Mom and Dad came in to say goodbye with A before they wheeled me away. The nice thing they do for you when they take you out of your prep room is give you some relaxation drugs so you feel calm and good when you’re going through the hardest part of leaving behind the people you love and entering the surgery room. The next thing I knew I was waking up in a recovery area that is very similar to an ICU. It was full of people and none of them were mine. It appeared to be setup having two patients for each team of people and I could see at least 8 patients in my very limited view. Next thing I know, the person next to me started having heart issues and everyone on my team was helping her. The other nearby nurses were either helping their patients or rubbernecking (seriously, they were just standing watching what was going on), no on was helping me or checking on how I was doing. I managed to get one of my team’s attention and asked her about my family and she very brusquely told me “we’re in the middle of something here”, which might have been reasonable if there weren’t so many available people rubbernecking and I hadn’t just come out of an extensive surgery. As a result, I felt really alone, helpless, and freaked out.
Finally they brought my Mom and A in. Turns out there is a 2 person limit (set expectations up front people!!!) and they visited for a little while and then a new team person tried to tell Mom and A. that they had to leave because I was going to be moved to my room. I promptly began crying hysterically at the idea of being alone again. The nurse tried to reason with me (seriously? I can’t even begin to tell you her side of that) and finally gave in to my high maintenance need that A. be allowed to stand next to my bed for transfer. Oh and the icing on the cake was that she didn’t even know how soon they’d be moving me, she was just kicking them out because she thought that was a good idea. I could have been stuck waiting for a while by myself again, she actually called them to move me stat because A. was waiting with me. WTF Dartmouth. The people moving me turned out to be really nice and it was great going with them and away from the wicked witch.
I then found out that I was in a shared room which was pretty disappointing. Here are the reasons it sucks to share a room after a surgery like mine: different schedules so you’re constantly being awoken for your med checks and their’s, no privacy or doctor patient confidentiality because a curtain doesn’t stop noise, and it’s a bit tough to hear about your roommate going through a knee replacement at 62 compared to a single mastectomy with reconstruction at 30 because of breast cancer. She was a very nice roommate as far as roommates go, but I really could have used the privacy and had been led to believe there was a good chance I’d get it. Turns out they have very few private rooms which really shocks me based on the quality hospital that they are and the obvious recovery benefits a private room provides.
Then the icing on the cake came. The next nurse shift tried to kick out A. again and said it was hospital policy that he couldn’t stay the night in my double room (not what we had been told before prepping for this). I started hysterically crying again and having a panic attack about being alone (the situation when I came out of surgery helped make this happen). The nurses weren’t helping by trying to smile at me and reason with me. I was super freaked out at being alone, I was already uncomfortable about everything that had happened and sharing a room, and not having a single room was not my fault (which I told them) and I shouldn’t be punished as a result. They came to the conclusion that hysterical me (and my large Dad who went to chat outside the room with them) were more than they wanted to take on and decided that A. could stay. Honestly I don’t know what we would have done if they had tried to pursue not letting him stay, I think they physically would have had to remove A. because I wouldn’t have accepted any explanation on why he couldn’t stay with me after everything I’d been through.
Mom and Dad stayed for a bit longer after that. I think they needed to see that I was going to be ok because it was traumatic for them to see me so upset after everything that day. I’m sure they were as exhausted as I was because of having to sit awake and worry through my surgery.
In the end I really liked the night nurses that I had such a bad first interaction with. They were really nice and did a great job of taking care of me which was a huge relief after everything. They also told my Dad that I would be moved into a single room the next day which helped me feel relieved as well. The night was weird. I was so drugged that I couldn’t remember how to swallow at one point. Only if I moved my head a certain way or drank water. I knew this was crazy, so I actually emailed myself this so I’d remember to put it in the blog. On a similar and less funny note, I was so drugged that I started thinking I was stoping breathing every time I almost fell asleep and so started having panic attacks. The nurses told me that there was an alert on my finger that glowed and would set off an alarm if I stopped breathing at any point. This helped me every time to remind myself, but wouldn’t stop the panic attacks from at least starting. A. wanted me to take something, but I didn’t want to take any more drugs because of how messed up I already felt. This doesn’t really make sense because it would have helped me feel less messed up, but i was very stubborn. As a result, we got maybe 2 hours of sleep. Not so bad for me because I’d slept through surgery, but not so great for A. This also helps point out how crazy it would have been if they’d forced A. to leave and left me along all night waking up in a panic every 20 minutes. As I said though, the nurses were really great after the initial interaction and helped me get through an extremely difficult night.
So this may be a TMI, but the best thing I had going for me through the night was having a catheter in. I say this because my Mom and some other people acted like this would be uncomfortable and it sounds icky, but oh my god it’s the best thing ever when you have had abdominal surgery. I couldn’t feel it at all in any way (pain or otherwise) and it allowed me to hydrate a lot (which I needed after blood loss and everything else) and not feel uncomfortable or worry about having to get up. Both of these things are huge after a surgery like I had. They unfortunately have to come out within 24 hours of surgery due to risk of infection and things got a lot trickier after that with figuring out how to get in and out of bed without hurting myself too badly.
The more icky and weird things I have in are my drains. Originally they thought I’d have 4-5, but I ended up with only 2 which I am very grateful about. They’re basically clear rubber bulbs with tubing that goes inside your wound. I have one for my abdomen and one under my left arm pit and they drain all the fluids out while you heal. They have to get emptied regularly and also striped (gross so I’m not going into detail) so they don’t get backed up. They’re a little tough because you have to make sure as you’re maneuvering in and out of bed or shifting position that you’re not pulling on them because you will feel it and it won’t feel pleasant. I had one brand new nurse assistant who didn’t realize they were attached and then pulled on one of them a little when she was learning how to strip them. That was the first and last time I allowed her to touch them. Drains also are used for all sort of post-surgery care so I would guess there are a lot of them put in less sensitive places than the abdomen and arm pit that she could practice on some day.
So that was my Monday, Tuesday was it’s own up and down adventure that I’m going to build up the energy to write about later.
I got invited to a friend’s wedding today unexpectedly today that I am so happy about (it’s next week) so that’s my high of the day. People are definitely the highlight of each and every day and helping me get through this step by step. Thank you all.