THIS ARTICLE IS A COLLABORATION WITH INSTAGRAM’S @THE_LYMPHA
Every year in October people all over the world celebrate Halloween; a celebration involving scary, creepy and deathly characters in fantasy stories. A celebration where we actually seek out being unsettled by horrifying stories that can shock and disgust us – and stories we are relieved to be able to put aside once Halloween is over.
But what about those real-life horror stories? Stories based on events that will leave those, they evolve around, forever changed – that is if they make it to tell the story. Those stories that could be considered to be the most horrifying, because they cannot simply be put aside once Halloween is over – and because they are real.
On the occasion of this year’s Halloween you can read a few real-life horror stories on Lymphoria.com written to contribute to creating focus on a specific type of horror. A horror that can happen to any person being struck by the condition of lymphedema and being faced with the challenges of insufficient knowledge about this condition and the potential side effects. A lack of knowledge that could potentially result in a child, a young woman, a middle-aged man or an otherwise strong 80 year-old cancer-survivor paying the ultimate price.
These stories are not published without purpose. The intend is to create awareness that a lack of knowledge about lymphedema can potentially be lethal to any one of us. Much more lethal than the otherwise scary and creepy creatures that might be hiding in the shadows of our imagination and that we bring to life once a year in October.
We wish you a happy horrifying reading.
STORY No. 1
I was on my way to the first sales conference with the division of my new job. It was really exiting and I was looking forward to it. Meetings, sightseeing, gala dinner and a nice hotel.
I was messing about in the airport as we were getting ready to board when I suddenly felt a sprain in a muscle in the thigh. On the plane I started feeling sore and unwell. But I kept smiling. Nodding and chatting to my new colleagues.
As we arrived at the hotel I started feeling worse and with embarrassment I apologised as I went to my room to lie down. As the day progressed I felt worse and worse. My left leg was getting more painful, my head was hurting, I felt nausea, dizzy, feverish. I desperately needed painkillers, so I made my way down to the nearest pharmacy.
By the evening I felt a little better, so I got up to take a shower to at least join the dinner with my colleagues. As I took my clothes off I was shocked. My left leg was bright pink! It had darker red patches, was shiny, hot, sore to the touch, throbbing and completely hard and taut.
I called a colleague, who was also a nurse, and she immediately said: “It’s cellulitis, we need to get you to the hospital”.
We took a taxi to a local hospital. The A&E doctor gave me antihistamine – for an allergic reaction.
As we waited to see if the antihistamine would clear it up, I got worse. By midnight I was in a terrible state and even the previously dismissive personnel had to act.
Suddenly a barrage of doctors and nurses came marching to my bed and started undressing me, poking me, checking me, touching me, prodding me, taking my blood and asking me the same questions over and over again:
”Does it hurt?”
“When did it start?”
“How do you feel?”
“Did you travel to a foreign country recently?”
“Did you cut yourself?”
“Do you have a wound?”
“How does your leg look normally?”
It was invasive and frightening.
Without further explanation I was send with an ambulance, with sirens, through the dark streets of Edinburgh to another hospital.
I was met by 3 stern looking surgeons in white coats.
No empathy, just an interest in the “subject matter”.
They started where the others had left off and finally concluded: Necrotising fasciitis – flesh-eating bacteria.
One of them told me that they were going to operate. The outcome was heartbreakingly frightening: It would either include months of rehabilitation as they would shave the skin of my entire leg and my back – or dying.
I looked at the surgeon and asked: “Are you sure this is what I have?”
“Yes”, he answered coldly – with no doubt in his voice.
I needed to call my husband!
He was also away with work, while our 2-year-old son was at home with the babysitter.
It was the middle of the night when I told him the news.
As we tried to make sense of it all, I said: “They are coming to get me now, I have to go”. I hung up.
The anaesthetist asked me to read and sign the documents before surgery. I then managed to write a one-sentence message to my husband on the back of some scratch paper. I left it with my belongings.
The 3 surgeons watched me from the door. They were discussing me in hushed voices.
Then one of the surgeons asked me: “How much does it hurt?”.
I was confused.
“Compared to what?”, I asked.
The most painful experience I have ever experienced was childbirth and the pain I had in my leg was not as bad as giving birth.
Apparently this information got them thinking. A marker and antibiotics was finally brought forward.
I stayed in that hospital for a week. I was on sick leave for a month. My leg was never the same. It never got back to how it was before. I never got to tell any of them how much damage they caused both physically and mentally with their ignorance of lymphoedema and potential complications.
STORY No. 2
She was lying in an ambulance. Beside her sat two ambulance assistants, speaking a language she did not understand. It felt like the ambulance drove for hours on this cold October evening.
She had resisted calling an ambulance up until the last second. She was scared about being in a foreign country, not speaking the native language and knowing that practically nobody spoke English here. It would be a nightmare trying to communicate at a hospital. But when the fever kept rising and she was barely able to speak or move and a distinctive red rash started showing on her left leg, she accepted a fellow university intern calling an ambulance. She knew what was wrong with her. She had had lymphedema in the legs for years and the signs on her legs were unmistakable; it was a cellulitis infection.
The ambulance finally arrived at a hospital. Somewhere in the foreign city. The twenty-something girl did not know where. The girl was driven into the hospital halls. She was put on some kind of board. It felt hard as a rock to lie on. The girl slowly drifted further way in a kind of trance of unconsciousness. But she had to stay awake. She needed to make sure she was given the proper medication. Otherwise she knew what the consequence would be. The infection would spread to the blood vessels, leaving her with a life-threatening blood-poisoning.
The hours passed by. Her body ached from lying on the board, which could under no circumstances have been made to lie on for more than a few minutes at a time. The exhaustion was excruciating. At the same time the nervousness about the situation, the pain and the frustration about the fact that it was not possible to communicate with any of the doctors or nurses had left her mentally and physically tired like never before.
The hours passed. Because of the brutal surface she was lying on it was impossible for her to find rest. It became 8 o’clock in the morning; she had been left on the board for eight hours. Without being treated with the necessary medications. The symptoms were worsening and nobody would listen or help.
At some point the staff moved the girl because she was taken up room in an inconvenient place. They drove the board with the weakened, pale girl up next to emergency room entrance. People rushing back and forth. At this point the girl was barely conscious and she could barely understand when somebody tried to speak to her. There was so much noise. Panic. Ambulance assistants pushing up the doors to the emergency room, rushing through with injured people. At one point the girl opened her eyes for a second and looked to her side. In a blur she saw a man being driven through the doors on a gurney; his skull was smashed and there was blood everywhere. He was driven right passed her.
And so it continued. One injured person after the next was rushed into the hospital. She felt lost. Helpless. And she was not being treated. For every minute that passed her condition worsened.
After a few more hours she was finally placed in a room. At this point she had been trapped on the board for many hours and her bladder had begun aching with extreme pain because she had to go to the restroom. But she did not have the strength to stand on her feet. She desperately tried communicating with every nurse that came into the room; she used all her strength to try to – in simple English words – explain them she had to pee, she hand-signalled, she made sounds. The nurses just dismissed her. Suddenly there was nothing else for her to do but pee in her bed. She was left lying in her own urine.
Finally the doctors began giving her penicillin! The girl was on the edge of crying of joy and relief. But the doctors refused to listen to her diagnosis of the condition. They bounced her from one examination to the other. They did not acknowledge this condition. She desperately wanted them to listen and treat her the way she knew the infection had to be treated.
Despite starting the treatment only the fever was under control, while the red, burning, sore distinctive rash caused by the infection kept on spreading. In earlier cases of the infection the girl used to get the distinctive and painful rash on her left leg, but this time it kept on spreading. On the entire left leg, on the entire right leg, on her belly, all the way up her back. She could barely lie on the bed now as a result of the unbearable pain from the rash. And what was worse; the more the rash spread, the more the infection would destroy lymph vessels in the girl’s body, putting her at higher risk developing chronic swelling in the rest of her body and potentially getting more infections. More infections that would resolve in more lymph vessels being destroyed. And so the dangerous circle would continue.
“AAAAAAH, AAAAAAHHH!!”, the girl woke from her rest by the sound of the old woman lying next to her in the room screaming desperately.
“AAAAH, AAAAAARH!” She did not understand what was happening, what was this. She looked to her side to find the old woman in her bed, squirming and kicking. A man was lying on top of her! Him tearing and pulling in the old woman’s hair. He was only wearing a diaper and an open shirt. The skin on his face was greenish. He looked like something that had jumped out of a horror movie. The girl froze out of pure shock. The terror of the sight left her paralyzed. When her brain finally caught up with the awfulness of the situation, she tried lifting her body up. She had to help. She had to help that woman now! But she did not have the strength to move and she was forced to lie and watch the woman next to her being molested.
After 3-4 minutes of screaming, staff finally arrived to the room. A nurse slowly walked to the bed of the old woman, gently took the arm of the attacker and helped him down from the bed. He willingly jumped down. When he and the nurse passed the bed of the young girl, he threw her an obsessive stair. At that moment she realized: I could just as well had been the victim. The fright in her body was making it hard to breathe.
A few hours later a nurse calmly walked in to the room as usual, preparing medication and such. “You sleep well?”, she asked. Finally, a person who spoke a bit of English! However, a bit astounded by her question, the girl answered a clear “No.”
”Oh, because of that man last night”, the nurse then asked. Yes, what do you think, the girl wanted to yell at her. The nurse then said: ”It not his fault. He is sick in his head. He does not hurt anyone, it just happens sometimes.” The girl then realized that she had heard screams earlier before as well. What if the man had done this before and that was what she had heard.
The nurse continued: ”He also stays on this floor and can go out of his room. That is just the way it is.”
Like it was nothing.
The girl started crying. She had never been so scared. She had never felt so unsafe. And the infection-caused rash had worsened to a degree that she never knew was possible. It was all over her body. Much, much worse than when she was admitted to this hospital. It looked like her body was burning. It was dark-red, some places almost purple.
There was no doubt. She had to get out of this hospital. She had to go back home. To a hospital that could cure her. To a hospital where she was safe. No matter the lie she would have to tell to get out.
Both these true stories evolve around the fact that patients with lymphedema have an elevated risk of potentially deadly cellulitis while immediate antibiotics could have prevented these both emotional and physical traumas. And the lack of knowledge about the situations almost resulted in the skin on one woman’s entire lower body being removed, possibly taking her life in the process, while the other woman could potentially have died from evolving blood poisoning.
Do you have a horrifying lymphedema-related story yourself? We would gladly publish it on the website to contribute to creating awareness about the importance of promoting knowledge about lymphedema and the complications based on having lymphedema. If you wish to be part of the project, you can send an email to firstname.lastname@example.org.