Same disclaimer: may include some gross details, but again you’re reading my blog about going through breast cancer… Also I had a mixed experience of being in the hospital and dealing with the chaos of all the personnel that you interact with and change over. Overall I am happy I went to Dartmouth and would go through this again there and think that these issues are probably a systematic hospital problem and not location specific. However, these things happened and I’m raising my voice first here and later will be contacting the hospital about these issues and my suggestion at the end on how to better avoid them. I also don’t think that anything that happened to me was malicious or personal, but I do think that a lot of it could have been avoided. You’re intrigued now aren’t you?
Tuesday was a tough morning after waking up all night from panic attacks. I was feeling tired and very disoriented. It was not a great start therefor to have 3-4 doctors burst in doing rounds and spend about a minute and a half on me before speedily exiting again. Grey’s Anatomy led me to believe there would be more patient interaction/consideration. They didn’t do a good job of explaining who they were or what their purpose was, they did however tell me that they wanted to get me off my pain pump and maybe have me leave that day. I had been told to expect 3-5 days in the hospital, and here were these strangers telling me less than 24 of being in the hospital, still using a catheter, not having pain under control, not having yet stood up (let alone walked), and having spent the night having panic attacks that I should leave. After taking a quick look over me they speedily left the room with that bombshell. I was left stunned in their wake. I felt much more like a box being checked off on their clipboard than a person they were caring for in a hospital bed.
I told A. after they left that it was way too fast and they needed to slow down and we’d have to make them slow down next time. I accepted that they were doctors and that we needed to advocate for me, it wasn’t their responsibility to naturally give a shit about what I needed. This is the weird world that being in a hospital puts you in mentally. We were both so caught off guard and exhausted that we hadn’t had it together enough to try. Luckily the next three visits I had were from my real doctors and they were much more professional and reassuring. They talked to me like I was their patient instead of at or around me. My surgeon was pleased with how the mastectomy had gone and also really loves my new hair (it’s little things like this that can give you a big boost when you’re down, things that recognize your personhood). My plastic surgeon was a nice surprise because I thought she’d be too busy to stop by, so it really meant a lot that she made time. She answered some of my questions about the way my body looked, including that I now have a dent on my boob that I’ll need to get filled in after I finished chemo. Nothing to be concerned about and the time will also allow everything else to settle so if there’s any other superficial adjustments they need to make for symmetry they can get it all done. I’ll just need to schedule it about a month after I complete chemo and come back up to get it done. I’m sure some of you women are totally amazed how calm I am about having a dent in my boob, but honestly, I was trying to show people it because I thought it was so crazy (in an amusing way). I’d post it here, but probably not the best decision I could make professionally and A. would get pretty pissed. But I mean compared to all the different pieces involved with getting me back in action, including upcoming chemo, a little dent in my boob is incredibly far down my list of things to get my panties in a bunch about.
Lastly I had the physicians assistant from plastics come who was also great at taking me through next steps and answering questions. She had a calm demeanor that really helped me. She was actually part of the morning group, but not leading that craziness.
Tuesday was also when I got a nursing assistant who was just starting the job (day 2 I believe) and she was the one I mentioned that didn’t realize my drains were attached to my insides and pulled on one as she was learning how to empty it. A. informed her boss that would be the last time she interacted with them (totally not in a mean way, but in the my wife can’t be put through this way). She then later tried to do them again and I told her no way and then the next day tried to get me to let her try again. The density is mind boggling. On top of that she seemed to have no body awareness so she was constantly running into my bed and painfully jolting me (I have very fragile and tender abdomen), she didn’t have steady hands so that was nerve wracking and pain inducing depending on what she was doing, and also seemed determine to be as hands on as she could with me (of course). She was also one of those people who’s a nervous smiler and trust me that did not make me feel any warmer about her knocking me around to have her smile at me each time afterwards.
By the end of the first day with her I told her boss that I couldn’t have her coming in unsupervised any more (the latest was she’d hit my bed again and hurt me, forgotten some things I needed for the bathroom and left me painfully just standing there which I wasn’t supposed to be doing much of, and dumped a bunch of water all over my table of things including my phone and hadn’t even noticed). I completely support everyone learning, I go to a teaching hospital after all, but she was way too green and harm inducing and I just couldn’t handle any more (this was at about 4pm and she had been on me since 7am). She’d even run my bed into the wall while moving me into my new hospital room right after her boss had told her to slow down while moving my bed. I then had to reassure the other nursing assistants that I don’t have a thing against nursing assistants, overall they were great and just as capable as the RN’s for my needs. It was just specifically that I was too fragile for someone on day two of their career to be practicing on (and also I think it was pretty person specific, another day 2 LNA might have been fine). I breathed a big sigh of relief when she ended her final shift that I would be in the hospital for.
Other than that I really liked the RNs and LNAs. At the least, they were competent and attentive, the best ones were also personable and made me feel like they cared about me personally and were looking out for me. Most of the ones I connected with had two shifts with me so that helped my anxiety by having familiar faces whom I trusted and even looked forward to interacting with. I felt really high maintenance because I could do so little for myself, and they were so wonderful about taking care of everything for me and constantly checking in to make sure I was as comfortable as I could be given the circumstances. They even helped A. with a blanket and pillow for him (unfortunately there weren’t any cots available the 3 nights he stayed with me).
My Mom and Dad also stopped by and spent time with me. Tuesday morning I was elated starting at about 5am that my Dad was coming to see me, we had a really nice visit. I felt like a little kid waiting for Christmas. Tuesday afternoon Anton left to go clean our bedroom in case I was ready to go home Wednesday (we agreed before he left that there was no way in hell I was leaving Tuesday based on how I was doing physically) and my Mom spent the afternoon with me. We had multiple discussions about how I am a good delegator and would let her know when/if I needed her to do something for me. We’re still having those discussions. She did take a four-five hour shift with me Tuesday though like a champ. I never had to be alone which was really important because of my anxiety issues from Monday. Tuesday I also started walking short distances and have an idea of what walking will be like when I’m 90, slow and hunched over. I also had these leg compressors on in bed that help you avoid blood clots by applying pressure and releasing on your calves. I loved them. They felt kind of like a firm hug and helped me throughout the day feel like I was getting reassured and slightly massaged. My Mom thinks I’m crazy.
Moving into the single room gave me more space and also a window which made a huge difference to have natural light. I also had my family put up a pirate flag on the wall in front of my bed that I could see and my “Fuck Cancer” sign. Most of the hospital staff really liked the sign.
I had noticed a lump under my left breast earlier and the day and wasn’t sure what it was. Not the kind of surprise I was looking to see and figured it might be like the dent and need some additional work. Nothing urgent, but I wanted to be able to understand the full picture of what had gone well and what needed work later, and also what to keep an eye on. A plastics resident had stopped by earlier when I’d been leaving for a walk and told me he’d come back later (he smiled at me like he thought I had about one brain cell in my head). He never came back so I had him paged and then tried to get him to come by. He thought it would be better if I described what I was seeing over the phone rather than come see himself. Because that totally makes sense. He at last consented to try and find an intern to come by.
Luckily the guy who came by was the same plastics guy who had seen me before going into surgery and was really good talking to me like I was a person (although I tried not to let it go to my head). The lump is the muscle that was moved from my abdomen with the other tissue to create my new breast in the TRAM procedure. The swelling will go down in time, but may always have a slight lump there in the future. It’s pretty noticeable now so I was a bit freaked out. I felt really dumb though because they gave me a guide to the TRAM procedure the day I decided on it, which was also the day that A. and I had our first real meeting about my diagnosis and were in the hospital from 8am-6pm. It was a long day with back to back meetings all day with different departments. I completely forgot about my booklet after all of that and never read through it so it was a complete surprise to me to have the swollen muscle there.
Tuesday night was unfortunately really rough, but luckily I had a familiar face from a LNA I’d connected with on Monday to help get through it. I kept waking up in more and more pain, I finally hit about a 9 on the scale of 1-10 around 3/3:30am and was sobbing while everyone tried to help me. The issue was that I had to press my pain button to get the medicine, so the more I slept, the more I wasn’t keeping up with it, and I eventually hit a breaking point where I was in too much pain to catch up with the pain pump quickly. I then totally panicked as well and was sobbing which was causing more pain in the abdomen, it was rough. I felt like a child, helpless and overwhelmed by emotion. My team was awesome though and they stayed with me through it, getting me meds and talking me down, they also got the plastics on-call doctor who was the same guy who’d come to see me earlier in the night thankfully. He sat down with me and told me that although they wanted me off the pain pump, they needed to manage my pain first and that I should stay on it and keep ahead of it for now until they found something else that worked. He was really sympathetic and reassuring for me and A. I finally fell asleep around 4:30am. A. was a superhero, there was absolutely nothing he could do for me other than be there and hold my hand and that’s what he did. I’m not sure I could have kept it together like that if situations had been reversed.
The plastic docs rounded again around 6:30am and it went even worse than Tuesday morning. They were unhappy that I was still on the pain pump and I kept telling them that their colleague had okayed it and how much pain I’d been in just a couple of hours before but it was like I was speaking to a wall. They made me feel completely bulldozed and like no one was listening or cared. I just don’t get how that pain pump being removed was more important than managing my pain from surgery that had happened less than 48 hours before. To top it off, they also removed my abdominal bandage and I didn’t understand that was what they were doing until it was off and that they weren’t going to recover it. My incisions goes across all of my stomach about 2.5 inches below my belly button, it’s pretty substantial. A heavy thing to deal with mentally to see it for the first time and have to keep seeing it when I was still recovering from my painful/panic filled night. Then they left. Communication was a huge shortcoming with them and causing a lot of issues for me.
The next thing I know, an RA or LNA (not totally sure) who I’d only briefly seen before and was not directly involved with my care came in and unplugged me from my pump. He told me the surgeons had ordered it and when I protested he told me that he would leave it in the room in case the pain got bad again and they needed to reattach it and then he left. That was around 7am. By 7:45am I was in pain again with no pain meds due until 9am and starting to get really freaked out. I paged my RN who was surprised to see my pump uplugged and when she investigated she found out that the doctors had not just had my pump unhooked, but also cancelled the order so I couldn’t get any additional pain meds regardless of pain status. This was unbelievable. They hadn’t increased my oral meds or changed them in any way, but had taken away a major part of my pain control less than 3 hours after I had been in the most pain I’d had since surgery and there was nothing I could do about it.
I had to get A. and my Dad to go out and try to talk to people about it because I was stuck in my hospital bed. It was incredibly belittling and made me feel so vulnerable to be treated like that by my doctors. They had ignored my concerns and clearly hadn’t taken much of an interest in what what happened to me just a few hours before they saw me. They hadn’t even spoken to the RN who had helped me through the night, they just found a random RN to do their bidding. Eventually my RN was able to get ahold of the doctors and get them to issue me a long acting pain med that she could give me at 8am and every 12 hours to supplement the other oral meds. She was my hero and helped me from crashing into that dark pool of pain again so shortly after I’d climbed out.
I had some visitors come by Wednesday morning which helpful mentally to get a little boost. First our main contact through the IVF process came by, she’s a really cool woman who we hit it off with. It made us feel good that she cared enough to take time out of her busy schedule to come say hello. One visitor was a friend from HS who has been a nurse (great to have someone not freaked out by my gory details) and the others two friends from college. They were also my witnesses when the plastic assistant physician came back through (she’d been with the plastic group that morning again) and I told her that my morning’s experience with plastic docs had been even worse for me and she told me that some of their jobs were to be a thorn in our side so we didn’t want to stay in the hospital too long. Let me remind you, I hadn’t been in the hospital for even 48 hours at this point. I was floored. It also felt like a slap in the face given what I had just gone through with the pain management situation.
Once I was in better pain management, my Dad and I went for a “walk” with a wheel chair and A. went out to get some non hospital food and take a break. We were only outside a short while because it was too warm to be comfortable for me, so we went inside and I got some tea and Dad brought me up to the hospital library. I used to work in the library when I went to Dartmouth as an undergrad and I was curious if my boss was still working there. She is and it was great to see her. She handled my probably shocking news like a pro and was really supportive and great to talk to. She later on came by my room to meet A. and say hello one more time before heading home. The one thing that amazes me time and time again through this is the connections that last that I’ve made through brief times knowing people, some years and years ago.
Weds night was good because it was mostly uneventful. The nurses woke me up throughout the night for my meds; normally you’re supposed to request them as you need them, but I’d discussed with them beforehand and we’d both agreed that it made sense for them to wake me up for the meds so I didn’t fall behind the pain and have a situation like the night before. As usual, the RN and LNA were both really nice and caring and helped me make it through without anything bad happening. This helped me be ready to get out Thursday because Monday and Tuesday had both been so bad in their own way that I was afraid to go home if I couldn’t prove to myself that I could get through a night in good shape. Having that under my imaginary belt gave me the confidence that I was ready to go home and be taken care of by my family.
I’ve thought a lot about what could have helped the negative points of my stay and I think having a case manager would have really made a big difference. Someone who was there something like M-F 9-5 that I could meet with each day and contact with any questions or concerns. I didn’t feel like I had someone consistently on my team because my surgeons were the people I’d been meeting with before surgery and are both really busy people so not equipped to be my day-to-day go tos (and shouldn’t be). The RNs and LNAs change every 12 hour shift and usually work 3 days at a time (so aren’t there every day), have too many responsibilities dealing with care to handle social work, and the hierarchy with doctors causes a problem for them to be patient advocates. Someone on the administrative side that could be keeping track of me pre and post surgery and be my consistent point of contact would have been a hugely reassuring piece for me and also help take away the chaotic element of having so many different points of contact in my care for me and my family.