Middle of my hospital stay

Wednesday April 2 

Felt really good today Mom and Dad and Joe came in for most the day and we face timed some of the family and friends. Kids came in after school this afternoon and it was sooooo good to see them. Porter actually does better than I thought he would about having me around,  he still lets mom or dad take him from me and he waves goodbye. I was still pretty sore, but could tell my pain medicine was working 

Thursday April 3 

Got into my chair for the first time today. It felt good to be sitting out of bed and seeing the world from an upright position. AM nurses were great, getting me situated with things and allowing me to sit and visit while my friends were there (Alex and Eliza came) They were the sweetest and Alex brought me the softest Peter Alexander pjs and a magazine and Eliza brought be a bag full of goodies. It was so nice to see friends and chat with them about what was going on back home. It is a good thing that I didn't actually knock myself out while they were there. I was having such a love hate relationship with my pain pump due to the choice I had of when to push my button. My friends have been such a help through all of this with meals, my boys and my parents, I couldn’t have done it with out my friends. After the girls left, I was really trying to figure out if the pain pump was the was to go. It made me feel out of control with my pain because I could push the button a every 5 minutes for half hour and feel great so I would fall asleep and then I would get on the other end of the spectrum and wake up in a ton of pain because I hadn’t pushed the button. I was nervous for this to continue into the night and that I wouldn’t be able to rest and per my plastic surgeons suggestion we decided to remove the pain pump completely and start taking strictly oral pain meds. I feel like we were able to get them sorted in the beginning and we were able to control the nausea because they would regularly pump my portal vein with zofran and another anti nausea drug. It went on like this through the night and I actually had a much better sleep, but continued to wake up every 2 hrs for pain meds and anti nausea. 

Friday April 4 

I was still quite nauseated and a lot more sore when I woke up today. My parents arrived for a visit and I was struggling with my pain and struggling with my nurses attending to me which was hard. It has since been brought to my attention that the hospital is trying out a new schedule that runs with less nurses. I was in a ton of pain with the drains that were coming out of my back on the righ. They were sitting on a nerve and every time I moved it would send sharp shooting pains like I was being stabbed in my back. Of course my mom and dad don’t like seeing me like that especially 3 days post op when I should be getting better not worse. In the middle of all this sweet Danielle and Kristi show up with beautiful flowers and not expecting me in pain because Alex and Eliza had just told them how well I was going. It ended up being a short stay for the girls, which I felt bad about, I wanted nothing more than to be in no pain so I could have hung out with them. I can remember pushing my nurse button in a TON of pain and having no one come for 30+ minutes. It was horrible. My plastic surgeon came in at one point and was glad I was off the pain pump, but was wondering why the catheter wasn’t out and when I told him the problems I was having with the medication he said okay, lets switch your meds then. This changed my life for the time being. I went from being in pain and sick to not in pain and having nausea only every so often which we were assuming was oxy but figured out later it was actually a drug called tramidol. I have completely since cut that out. It also made my dreams soooo crazy and I would close my eyes and see things and be half asleep, but dreaming. Worst dream I had was a snake one where I found three snakes and they were out of control throwing themselves at y family and wrapping around the legs of them and constructing. Also another dream was waking up outdoors in my hospital bed in a wind tunnel tent type thing. strange. Joe arrived once things had finally calmed down and was able to spend quite a bit of time with me. It was so nice to have him here so I had the help. 

Saturday April 5 

Joe came in the AM after dropping my parents and the boys off to the Fremantle markets that go on Friday Saturday and Sunday. He stayed for about an hour, then went to grab the boys and my parents, they were supposed to come back, but ended up heading home. Early afternoon my mom was delivered to me by a carful of men. Joe, Dad, Rick, Adam, Jordan and Cody were all headed to the St Kilda vs West Coast Eagles footy match. My mom was able to spend the next 4+ hours with me. It was soooo nice to have her here, we talked about things, we napped, we talked some more. The time flew by way to fast and when the guys called to say the game was over and they were on their way to get mom, I was bummed. All the guys came up to visit for a minute and it was nice to see them. Funny thing I remember is when they walked in I was wearing these purple purse looking pillows the breast care nurses gave me, one on each aren to keep my arms off my incision. I laughed when I realized that and immediately took them off. We had a good little visit. 

Sunday April 6 

I spent my morning resting, Joe came in the early afternoon with the older boys. We played Uno and I lost. We went on a walk and ended up at the vending machine, It felt good to walk around with them and I think it helped them to see that mommy was still mommy and I could get up and move around even if I did have bags on my shoulders filled with drains that are filled with blood and gross stuff (which they actually think are cool). We ended up getting each boy a soda and settled them on the treats I had back here (I’ve been well taken care of by friends) The boys laid in my hospital bed and watched a show. They had a couple rolls with butter which is their go to when they arrive ,they tell me they are hungry straightaway and that they want a roll. I save them in my drawer. Rolls, butter and apple juice after my meals. You never know when my kids will come in and I need to be prepared so I can feed them. Mom and Dad arrived with Porter quite a bit later so it was fun to spend time with the older boys with out the distraction of a little toddler. Once Porter arrives, there’s a window of time that the kids can stay. Porter is so cute through all of this. He tries so hard to reach out to me so I can hold him and I know I won’t be able to hold him for at least 4 weeks, this has been one of the hardest things on me when they come in. I want to hold and cuddle and snuggle my sweet boy. I miss changing him and feeding him and taking care of him. Alex came by for a visit as my parents were leaving with the kids and it was so nice to have her there to chat with while we ate our dinner. This night was the hardest night sleep I have ever had. I was so backed up and could not go to the bathroom it was making me sick. This continued into morning. 

Monday April 7 

Joe arrived after my breakfast of All bran and prunes. Nothing seemed to be working for me as far as the bathroom was concerned. It was bad! After about 2 hours we got things under control and figured out what worked. The crazy thing about hospitals here is your can leave your hospital ward and walk around the hospital, go outside and walk around, grab lunch at the coffee shop in the building next door. So Joe and I headed downstairs and out the front of the hospital. It felt so good to be outside and to have the sun shine on me. We grabbed some lunch and it almost felt normal until I looked down at my bags and realized there were still 5 drains hanging out of my body. We headed back right after lunch because Joe said I had lost all the color in my face, I guess it was a hard outing?… Once back in the room it was time to wash my hair, I had been showering daily with plastic covering my drains and my wounds, but had not washed my hair. It had been almost a week of me putting it off and I was ready to have clean hair . As he was pulling out my clothes for after the shower and laying them out for me, making sure my drains were in the right spot, making sure I had a towel, doing everything in he could to make it as easy as possible on me, it hit me. We weren’t supposed to be doing this until we were in our 80’s and we were old and frail. Here we were 31 and my husband was having to shower me. Joe joked that even at 80 he thought I would be the one showering him not the other way around. The depth of my love for the man I married grew so much today. After this experience I have really tried to take a step back and put myself in his shoes and have tried to really understand what he has been through the past 2 months. It had been exactly 2 months since he had lost his mom to cancer, the same disease I now have. He has had trials put in his life that directly effect the two women he loves the most. I can’t even imagine what he is feeling. I find so much comfort in knowing we have the knowledge of eternal families and I know that we are going to be with his mom again. I know he does too, but I think when you are watching your loved ones in pain and suffering it makes it hard to keep perspective. 

Tuesday April 8 

At this point my pain was very well managed. I was finally feeling regular, and I just feeling like all I needed was to get these drains to stop draining so I would be able to go home. Danielle, Kristi and Eliza came in around 11 and brought me a big mac and fries. First meal I had dated outside of the hospital food and it was heaven… i don’t even like McDonalds, but it sounded soooo good. While they were here Dr. Willsher showed up with my Pathology report on the cancer (see separate post for details on that) and basically told me the cancer had spread to one of the sentinal nodes so I would need to have my left auxiliary lymph nodes removed. He was scheduling the surgery  for the following day and I was to wait for his nurse to let me know the time. He spent a good amount of time with me going over everything, and I was surprisingly okay to have the surgery. I think at this point I’m feeling like all I want is my best cure so I’ll to whatever it takes so I can be here for my husband and my 3 sweet babies. After he left I called Joe and explained everything to him. He seemed concerned, but okay. He headed straight over to the hospital to be here with me. It was just so hard to go backwards into recovery and into my treatment. I got off the phone with Joe and headed into the lounge where the girls were waiting. We had a good talk about it all and I felt really good about 

Wednesday April 9 

So I woke up this morning and was only able to have a light breakfast since my surgery was at 2 pm. The nurses were extra stressed today and not helpful at all. It was very frustrating. The anesthesiologist told me I could drink clear fluids (water) until 10 am and I had been waiting for the nurse to come back to help me with my gown and to get me water finally I looked at my clock and it was 9:55 and I was so thirsty, the nurse was so annoyed when she came in and didn't understand why I was in such dire need of water she finally got it after I explained. Joe came in a few hours before surgery and we kinda just hung out. I was super calm when they came to wheel me into surgery and even when I went into the operating room. I couldn’t get onto the table this time by myself so they had to get a sheet to move me from my bed to the table. The anesthesiologist seemed to really address my concerns with the anesthesia, I didn’t want to feel nauseous when I woke up and I was really worried about being backed up again, that was terrible… I woke up after surgery in the post op room and just remember asking for water and chapstick and feeling better once I got it. They wheeled me back to my room and I was still pretty out of it. Once I started coming to, my mom, dad and Joe were there. I guess I was super chatty and couldn’t stop talking. Funny thing is there have been a few things since that night that have happened that I do not remember at all. The next day when the kitchen staff brought lunch around I guess I ordered spinach polenta and even asked joe to write large next to the typed name of the menu item so I could get an extra large serving. Who eats polenta? Seriously the other menu options were way better. I guess under drugs polenta sounds amazing? I didn’t sleep well at all this night. For some reason I was wide awake and I love the nurses that were on this night (Jenna and Blair) They are my favorite. We stayed up and chatted about the clothes, life, their work and the hospital. It was fun. They finally left my room around 3 am and both commented they felt like we were having a sleepover. 

Thursday April 10 

This may have been the loneliest day I had in hospital. No one came in the entire day and my surgery site was starting to act up and give me trouble. My left shoulder blade kept throbbing and popping and my left ribs felt like they were getting stabbed which I’ll attribute to nerve pain from the placement of my latest drain. It was a lot of taking pain meds this day and trying to get comfortable and couldn’t. Also a shooting pain started up at the top of my ribs, this only acts up when I stand up. From what I’ve learned now I think I have done way too much because of being here by myself for most of the days and not wanting to bother the nurses to reach for something. I was doing a lot of reaching behind me which I shouldn’t be doing at all and I’ve learned that the hard way. Joe came in around 4 and at this point I was grumpy. I was exhausted, lonely, worn down and in pain and really needed to be doted on. Of course Joe didn’t know any of this so I kinda kept getting upset and he didn’t know why. I had waited to take my shower for the day until Joe arrived so I could again wash my hair, so we decided to do that. As I lifted across my body with the arm that the lymph nodes were removed from, my arm just felt so heavy and kinda dropped bad into place. The heaviness and tingling scared me so much I started telling the nurses all about it. The nurses attributed it to the surgery I had, but I thought it had to be something. This was super scary. After my shower Joe got me settled and then had to leave for dinner with the family that our friend Danielle was making. At shift change when I met with my new nurse around 10 pm I explained to her what was going on with my arm and started checking it out saying that my arm was quite warm and the heaviness could be a sign of maybe lymphedema. I kinda freaked and called Joe and had a panic attack. When you already have a million things going wrong with your health the last thing you want it one more thing. I had a good cry and after she left the room I googled all about what to expect after that surgery and read all of the side effects which can at times be scary and turn into scary things, like lymphedema. Then around midnight, a second nurse comes in to check it out and completely confirms what the first nurse had said. At this point I’m in tears and they are telling me it will be okay that Sarah (the physical therapist) who is the absolute best will be in first thing in the morning. They told me she would fit me with a compression sleeve and we would go from there. They said not to worry that there were going to be times during all of this that I just need to have a good cry and that I need too break down. They said how strong I had been through all my surgeries and how positive of an attitude I had and that sometimes it was okay to just say this sucks. After they left my room I tried to get rest, I turned off my tv and sat her in the dark and with the help of the sleeping pills I took, I slept. Only for a couple hours, then I would wake up take pain meds, sleep a few more. I finally had a good night sleep. In the middle of the night I talked with people and posted something on instagram that I totally did not remember posting or writing the comment under the quote. Pretty funny to re read it the next day only to realize you don’t remember writing it. 

Friday April 11 

I was woken up this morning to Sarah the physical therapist being brought into my room by the night nurses. They had caught her first thing as it was only 7:15. She’s a tall asian lady with not much of an accent at all because she moved around a lot growing up. The first thing she did was come over to my left arm, touch it and say you don’t have lymphedema. I seriously wanted to jump out of my bed and tackle her with the biggest hug. She then told me that she would prove it to me. She put some electrodes on my right foot then my right hand and then my left hand. She moved the wired between my foot and my right hand then my foot and my left hand and showed me the result on her machine… normal, what a relief. Then she marked my arm up with a red pencil and took a measuring tape to measure around each section of my arm. She wrote down the results and compared them with the left side and said my arms are the exact same size. We went through the exercise I can be doing and are you kidding I can totally handle it. Before my drains get taken out, one set of 10 daily for each exercise there are 6. After the drains are taken out 3 sets of 10 daily. We went through how much I can lift, for 4 weeks only 5 kilos on my right side and for 6 weeks only 5 kilos on my left side. She also showed me the appropriate arm motions I can use. Basically no reaching across my body or behind my body or lifting my elbows above my shoulders. After she left I was in such good spirits I showered and got ready. I finally put on a little makeup and felt really good about my recovery at this point. I mean the numbness and tingling is still there, but after slowing down and not doing much with that arm it really helped the shoulder and ribs. My parents arrived with porter and he was so excited to see me. Gosh I love that boy, he is just a dream. Eliza also came in while my parents were there with a bag of sunshine for me. All things in the yellow bag were yellow. She seriously did brighten my day so much. After she told me some things that had been on her mind, I told her about my night that she had no clue about. The lord worked through her that day and I’m so grateful for a friend who listened to a prompting she had. It meant the world to me. My plastic surgeon came in and relieved me of another drain so I’m now down to 4 (2 on each side). My parents stayed a little while longer and as I walked them out Porter flirted with the nurses the entire time he was blowing kisses and waving at them and saying bye bye bye. They were in love with him. Joe came next so I sat and repainted my nails and pampered myself a little which was super nice. Alex and Danielle came next with lunch and then my sweet friend Linda came from school. She brought me beautiful flowers and much needed magazines as that’s about all I can read right now because of the drugs I’m taking. We had a nice visit and then all of a sudden the nurses came in and said did you know we are changing your room and moving you down stairs? I had not clue and I had a bunch of stuff in my room. Luckily I had all of them there. They were so sweet to help and set me up in my new room downstairs with no view:( The hospital closed the upstairs ward and combined the wards for school holidays because it’s generally not a busy time for this hospital. After the girls left Joe and I ate and I napped. It was my favorite day since I’ve been in here. I felt super good and I had lots of visitors:) That evening I asked my parents to bring up my boys so they did again. I just miss those kiddos. Tate whispered to me 3 or 4 times how much he missed me. Such a sweetheart. They all get so excited when they come in here. Max asks for a roll straightaway, Tate asks for candy, and Porter asks for me to pick him up. I wish I could give each of them what they want but I guess 2 out of 3 isn’t too bad.