Day 5, hotel and travel home
Pain level: 6/10
Misery index: complete 10/10
There's so much to say after today. While not the most painful day, certainly the worst overall.
I actually woke up pain free, ate a decent breakfast and with my friend's help, started to pack and get ready to travel back home. After we left the hotel, everything went wrong.
We got a wheelchair accessible vehicle to take us to the airport. The drive was about 80 minutes through New York city traffic and potholes. I was in significant pain when we arrived at the airport. At the United desk, the attendant didn't want to help us - she kept pointing to the machine while texting (this was the First Class desk). The porter who was helping with our luggage actually yelled at her. At TSA precheck, which I have and my friend did not, they first let us through, then separated us at the last minute, because the TSA gate agent wanted to exercise his God-like TSA powers. They had plenty of staff, but no one bothered to help me. A passenger behind me took it upon himself to both help me and yell at the staff, while other passengers raised their voice as well and commented on how messed up that was. I finally went through, got my carry-on, and wheeled myself all the way to the gate, since I couldn't find my friend.
All I can say is that New Yorkers are massive d*cks in general. They do not give a sh*t if you're handicapped. Both handicapped bathroom stalls were taken by non-handicapped people (more on bathrooms later). While wheeling myself through the airport, not a single person offered to help. Several people on their phones almost walked into me (one did) because they expected the person in the wheelchair to get out of the way. I finally made it to the gate, and my friend did about 20 minutes later as he went through regular screening.
While getting on the plane: I was first through line as I both needed additional assistance, and was flying back in first class (1A and 1B). Here's where things get both interesting as well as educational. Your own wheelchair does not fit on the airplane. It's more than twice as wide as the aisle. So the airline is supposed to have an attendant waiting there to transfer you to one of their tiny wheelchairs and get you on the plane. The attendant was nowhere to be found. I waited for 35 minutes, in absolute humiliation, on the side of the door, as everyone looked down at me, and the flight attendants were desperate to find out where this person was. The pilot himself went to the front desk. The entire flight boarded. I was still waiting. Finally, someone came and with a lackadaisical attitude, put me in the tiny wheelchair and moved me 5-7 feet through the plane to my first class seat.
The airplane staff was absolutely mortified. I was livid. The gate agent came over to tell me it was my own fault for having my own wheelchair, at which point the captain lost it and told her "we have a playbook for this and it should have never happened". She shrugged and looked at me and said I'm sorry and asked if I needed anything. I told her I needed her to leave.
The airplane staff was super nice to me. By the time I landed, they had someone waiting, and my wheelchair was also waiting while they opened the door. They had also issued a refund for my flight. I didn't ask. In the airport where I live (also a big city), people left and right were asking if they could help us, and several airport staff went above and beyond to help us secure a wheelchair accessible taxi, which were mostly unavailable that evening for some reason.
On going to the bathroom on the plane: there's a youtube video in cyborg4life's channel where he apparently got feedback from 3 post CLL surgery patients, and at least one went to the bathroom, but said it was very difficult. I don't think cyborg4life lied. But I think whoever gave him that feedback wasn't being truthful. I would not have attempted to go to the bathroom unless my life depended on it, and I was in Row 1, literally steps away. I didn't have a walker, and if I did I couldn't use it. It's wider than the aisle. You're not walking on your own, even on weight-bearing nails, immediately after the surgery. During the recovery period, you're exhausted from 3-5 steps. There is no feasible way I see someone walking to a bathroom, standing for the line to clear, etc., from the middle of the plane, on a plane that may suddenly start shaking, etc. I brought a male plastic urinal onboard and was prepared to use it under dire circumstances, but had gone to the bathroom before and ended up being OK.
I got to my place fully exhausted and in a lot of pain. All the movement takes an immense toll on your legs. I had a massive fever from the exertion (102.7) and broke into a sweat that drenched the bed. I didn't sleep well - I was in pain pretty much the entire night, and taking a day to rest.
Things worth noting:
- The male urinal plastic thing, hand sanitizer, body/butt wipes and the reaching/grabbing device are some of the most useful things you can have. They will make the difference between endurable pain and sheer misery.
- Bathrooms on a plane. Not possible. In my experience, I don't know how someone in their first week of CLL would be capable of this feat
- Stories of people doing elliptical for 20 minutes, walking, whatever immediately after surgery: these are either fabrications or the people doing these thing have super powers the rest of us do not. Whatever nail you have, your legs are FULLY BROKEN. In speaking to my personal Dr., he explained the pain and swelling phenomenon to me. Your body has no idea of what happened to you - it doesn't know that this was an elective procedure or that you just came out of a car crash, or that you have full bearing or partial bearing nails. It knows it is under major trauma and will rush platelets, red blood cells, etc. to the site to repair. This is why you have the bruising and swelling, as well as the pain. They are indicators for you to rest and leave the traumatized site the hell alone. The legs will feel the same for a while. Heavy, hurting, tired, and the smallest movements will leave you dizzy and in pain.
I wish the people writing these diaries would have been a bit more forthcoming about the degree of pain and effort this involves, and how much it really takes out of you, especially during the first 1-3 weeks (which I hear are the worst). I am certainly of the personal opinion that doctors that make their patients walk immediately post-operatively or during the first few days extensively are absolutely medically irresponsible. Dr. Rozbruch and the hospital staff drew very strict lines around what was expected of me, and how much movement they wanted in the beginning stages. I overdid it yesterday, through sheer circumstance and with travel movement, and paid a massive price.
- how handicapped people are treated. Yesterday put people on crutches, in walkers, in wheelchairs etc. in a completely different perspective for me. I tried to be courteous, but I have to admit I've used the handicapped bathroom before, and being inpatient waiting in line behind a person in a wheelchair. Having now been fully on the other side, I think I'm an a**hole for having done those things. We're hopefully in this situation temporarily, but many are not. We don't do enough to make their lives easier, and that's incredibly sad.
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Topic: Precise 2.2 CLL (femurs) with Dr. Rozbruch - February 2023 (Read 7180 times)