Let my introduce you to my thoughts, feelings and my world.
Part 1 "The diagnosis day"
I was 25 years old and just 1 year before had given birth to my son. I still know every detail about the day of the diagnosis, like it was yesterday. In the morning I went to the doctor to get my stitches pulled from the biopsy I had done the week before. I wasn't afraid, because nobody assumed that it would be something serious, not even the doctor. I entered his practise and all of the sudden a funny feeling overcame me. Still no thought of cancer though. I went to the doctor's examination room. The doctor acted, actually, rather normal. He examined me, pulled the stitches and said everything looks great and healing well. As I was getting dressed he sat down at his desk and took a deep breath. He said: "I got your results faxed to me this morning. I cannot believe it myself, but you have a invasive squamous cell carcinoma of the Vulva - you have cancer!!!" I started to shake and tremble. I have cancer??? "No way, that can't be... I just had a baby, I can't die yet." I didn't cry a single tear. I was paralyzed. Then he told me I should ask for an appointment in the oncology in the hospital, where they should decide on the other procedures to come. The only thing that went through my mind the moment was NOW WHAT?????
Part 2 "The diagnosis day"
Now what????? now whaaaaat? I sat down in my car with my results in my hand. I couldn't catch clear thought. Everything was so surreal. I was supposed to have cancer? Ugh, noooo. I had been feeling great, not sick at all. I had just lost some weight, which I thought was pretty sweet. No other signs at all. I took my cell and called my Husband. When he answered, I started to cry hysterically. He got scared and shouted in the phone. I quieted down and then the words just popped out: I HAVE CANCER! " Then I just hung up. I went to my parents-in-law's house, because they were babysitting my little baby boy Dorian. He was only 16 months old at the time. I took the results and went in the house. Everybody was gathered in the kitchen. Dorian sat just in his high chair and munched cookies. I looked at him and he smiled and reached for me. I broke down in tears and thought: I can't have cancer, I have a baby, he needs me, I can't die yet. My mother-in-law stared at me and asked: What's wrong?" I did not answer. I just my results to her. She read what was on that yellow piece of paper, during that the colour from her face went pale. She looked so sad and worried. I left the kitchen. It was time to call my mom...
Part 3 "The diagnosis day"
I called my mother and simply spite it out. "Mommy, I have cancer" The other end of line became quiet. I said once more "Mommy?" She started talking about other things. I said "Mommy, I just said that I have cancer, didn't you listen to me?" She yelled at me and said "Child, that's nothing to joke about!!". I felt so lonely at this moment. I broke down and cried. Then I shouted in the phone "I HAVE CANCER WHETHER YOU WANT TO ADMIT IT OR NOT!" and hung up. Once again, I had the feeling not to be taken seriously. Like so often in life before... "Why always this denial?" went through my mind. Afterwards I called the office and said "I gonna take this week off, I am ill. After I bumped into misunderstanding at work too, I thought what is wrong with thos world? I sat on the ground in the living room of my parents-in-law and was so destroyed on the inside. Yesterday the world was still fine. What had only happened?? How this can be that my life had changed so horrabilly over night ?Now it came to me, the QUESTION, why me??? The answer was quite clear -Why not!!!!!
Part 4 "The diagnosis day"
After the telephone call with my mother I sat down in my car again with my results at hand. I went to my long-term gynecologist. I knew him for a very long time. He had helped me through my awful miscarriage, which had almost costed my life, that I had a couple years back.
He took me in right away, although the waiting room was overcrowded. I gave him my results. He read them carefully and leant back in his chair. His eyes looked so sad and tired. He explained to me exactly what I had and tried to comfort me. He said: It will be a stormy time to come, but that I am young and I can fight this! He believed in me. He was a little bit of the fatherly type. I thought back at the time he helped me when, I would almost died of a miscarriage. He was the man who saved me, emergency- operating on me in the middle of the night, just to save my life...He was always there for me after that. He took a lot of time for our conversation now. The nurse had come in a couple times to stress a little bit, because the waiting room was so full. He shouted at her and said: „Then keep waiting them!“ I was very grateful to him. He agreed to make an appointment in the hospital's oncology for me. When I herad that word oncology, it scared me more than I thought, and I busted into tears again. I think, I had never cried so much, in one day. I couldn't catch clear thought. My feelings were soo chaotic. In 1 second I thought, everything will be fine again, and in the next moment I was destroyed and on the ground. Should this be, how my life will bei now? How am I supposed to handle all of this?? One week later the appointment in the oncology should take place...
Part 5 "My appointment in the oncology"
The week passed and my appointment in the oncology had come. I did not want to go alone, so I took a good friend. We sat in the waiting area, I was so scared. I lowered my sight. I could not endure it. Everywhere people were sitting, who were marked by this disease. People with the bald heads, people who were very skinny, people who looked as if they had a long hard time behind them. Should I soon belong to these people as well?! What had happened? It felt like a dream, an awful nightmare. Why doesn't anybody help me??? Somebody, just please wake me. But my cry for help was useless. I wasn't dreaming, it was bitter reality. I felt as if time simply stood still.My whole body was shaking. Suddenly the Nurse called my name. I simply stayed put. I was paralyzed. I wanted to run away, far away. ... My friend reached for my hand and grabbed it and said: „You have to go, it's your turn.“ I got up and had the feeling as if I was floating. Nothing around me was real any more. The nurse took me and put me in room one. I sat there, alone, so alone... The doctor walked in and welcomed me. Her first words to me were: „I am sorry, but when I read your results, I had to consult with another Doctor colleague. I have never seen something like that with someone as young as you! My heart almost stopped beating, as she spoke those words. I thought: what now? If the doctors do not know what they should do with me, my destiny is probably already sealed. I asked her quietly: „So what will you do with me now!?“ She said:„ We must handle straight forward with this tumour. It is aggressive and particularly invasive. We will do a vulvectomy, and take out some lymph nodes. "What the hell is a vulvectomy???". The doctor didn't look at me any more as she said: „This is procedure in which the vulva is partly or completely removed. Clitoris, labia inside and out and a part of the vaginal canal." will be removed... All I heard was a really loud beep in my ears, I had the feeling that I was about to faint. I was nauseous. I was gone, in another world at another time... She shouted loudly at, but I only stared through her. Then she reached for my hand. I twitched back. I got up and said: „You want to mutilate me, take everything from me what makes me a woman? I'm sorry, then I'd rather die." I went out through the door, to my waiting friend. I broke down in front of her and quietly said: „I think I am going to die.“...
Part 6 "My appointment in the oncology"
The shock was really deep as I was on my way home. I felt like I wasn't in the position to do anything any more. Everything felt like a dream. The next few days I looked myself in and didn't let the world in.. Dorian was hat his grannies house, so he was taken care of. I had the feeling I was lost in darkness and just couldn't seem to find the light. Nothing made a difference. How fast one single word, "cancer", can turn your whole world upside down. Nothing is like it was before, and probably will never be the same again. Approx. one week after my visit in the oncology, my phone rang like crazy. I did not answer of course. But somebody was very stubborn. So I gave in an answered, a voice on the other end said:" Hello, Mrs. von M., I am the secretary of the head of department of ococlogy, Prof. Dr. D. He asked me to call you to make an appointment with you. He would like to get to know you and treat you." „Why?“, I said, He only treats rich patients.“ She said: "He became attentive your case. You are still so young and he would like to give you hope on winning this battle" I agreed to one appointment. After my first experiences at the oncology I had even more fear than before. This time I took my husband, without him, I wouldn't have gone... This time it was our turn very quickly and were not also in the same waiting area like the last time. I was horrified about the differences between private and legally insured treatment which had struck me here for the first time. I thought how sad it is, that they're are such differences. Humans are equivalent in my eyes. Everybody should have the same chance to survive. But in our world we don't all have the same chance on therapy. Either you are an interesting case like mine, or you have money and can buy the best treatment you need. I was infinitely sad, because all people whom I had seen at my first visit, did not have this chance. So, we sat in the doctor's office and Prof. D. walked in. He was a bearded man with white hair and glasses on his nose. I briefly had to smile, he reminded me of the Santa Claus, besides, it was also December. He welcomed us and immediately got to the point. He said: „Mrs. von M.., you have squamous cell cancer of the vulva- invasive. According to ultrasound liver, kidneys, spleen, bile, bladder, pancreas are without metastates. We cannot judge the lymph nodes in the deep pelvis." He talked and talked. I looked at him with big eyes. Almost like in trance. He then said: „I will not remove your complete vulva. A part though, must be still removed, which will be on the left side. Meaning, internal and external labia, as well as parts of the vaginal canal and perineum. Besides I will remove the Sentinel lymph nodes as well as surrounding lymph nodes. Therefore the operation smaller and better for you to handle. In addition, we do a radiation.After the healing process we can do a reconstruction, a so-called sculptural movement." I swallowed and said: „Smaller and better, yes, but still not that what I wanted.“ He looked at me and became very serious. He said: „Mrs. von M., you know that you have a serious disease, right? You can die from it!! We wanted to give me as much security, as possibly.“ I thought, there it is, the word "DIE". The first doctor who had spoken it out. I guess I still couldn't realize that. Even though I talked about it, the range and the reality seemed to be an extremely long way off. Life was only surreal at this moment. I turned to my Husband, he said: "You have to do it, there is no other way." I saw how he struggled with himself and how powerless he felt. I turned to Prof. D. and said: "Well, then let's do this." He looked at me and smiled, OK!! Now go home and enjoy Christmas with your family. Fill up your strength. We will start everything freshly, with new strength in the new year." I thought, this will be my new years resolution: „To fight at all costs!“ If I should fall, I will simply get up again. At that moment I did not yet know what tortures were ahead of me...
Part 7 "Preliminary talk - Vulvectomy"
I believe, too much time had simply passed. I postponed the OP appointment quite often. I was not able to do it. I was horrified, knowing that I was supposed to lose parts of my vulva. That thought made me panic! Didn't knowing what to expect. Unfortunately, my relationship did not stand up to this pressure. I isolated myself. Until my husband said, he can't handle this any more. We were taking a walk with our son, as I asked; „Why you are you so cold to me, I love you!?“ He turned to me, looked me sadly in the eyes and said: „But I do not love you any more.!“ It felt, as if one penetrated a dagger into my heart. I stood there, with cancer and without a partner. I turned round and ran home, without him. On the way home, I cried and imagined, how I was wanting this disease to eat me up! I wanted to give up! . I had the feeling I was being punished for something. What the hell had happened to me ????????? WHAT HAVE I DONE WRONG??? At home come, I packed up a few things and left. Nothing was clear to me any more. My whole future seemed to be like a black hole. I was alone and still I had to fight against death. How should I even survive this hell??? The passed days were filled with loneliness and aimlessness. Then it came to me: where were, my so-called friends? Unfortunately, most of them couldn't cope with me having cancer. Cancer scares everyone, so most withdraw themselves. So this fight should be my own. As the week passed, I gathered strength! I breathed deeply and went to the pre operation appointment. A whole day passed there. I was sent from station to the station. Blood was drawn from me, an ECG was made, as well as a lung function test. Then I talked with the anaesthetist. I got many papers which I should read and had to sign of course. The last talk was with Prof. D. He explained to me exactly what he would was going to do. He cleared up me about risks and side effects. He said, he would do a vulvectomy on the left side (Skinning). He would remove the labia, inside and outside as well as a part of the vaginal canal. "Side effects can happen." he said, "in half of the cases it comes for poor healing disorders, moreover, e.g., dysesthesias or urinary tract infections can appear. Pain will be strong to very strong, but we have meds against it. Walking and sitting during the first 6-8 weeks will also be painful.“ I held my breath. I only wanted to scream really loud. Then he said to me: "We'll take good care of you!" I thought, I don't give a shit, I don't want all of this!!!!! I went home to my grannys where I had been staying. I sat down and started to google "Vulvectomy". I opened the first image, then ran to the toilet and vomited. I sat down on the floor of the bathroom and and cried for hours. This was supposed to happen to me in less than one week...??? If you have strong nerves, then google Vulvectomy.
Part 8 "OP - The first..."
The night before my long hospitalisation was hell. I could not sleep of course. I was full of fear. Even if everything had been explained to me, I still felt that I was going to be butchered. So I spent the night in uncertainly what I was going to expect the next day... That morning I drove at 6:30 a.m to the clinic and was received there by the nurses. After a room had been assigned to me, the nurse gave me a O.R shirt and great stockings, I should completely undress myself and put on that "great stuff". In my room was a young girl, only 24 years old. The day before she had her operation.. She had a preliminary stage of cervical cancer. I thought: „Wow, the girls become younger and younger. Soooo sad!! I was the first on the O.R schedule. A doctor came and put an IV in my veins. After that, I was alone and scared, shaking without my whole body. Actually, my mother wanted to meet me here - but where was she...??? I got some meds which I should take. I thought: "thank you, with pleasure... I want nothing more than to turn the lights off..“ I took the meds. 5 minutes later 2 nurses came to get me. I said: „No yet not, my meds aren't working yet and my mother is not here either...“ Mommy where are you, I need you!!??? But she did not come on time.... I was brought to the O.R, was put into another bed and another team received me.
My heart raced. I could say anything any more. I was breathing really fast. I never had so much fear in my life before.. My legs were strapped high and apart in two special props. My arms on the left and on the right side from me strapped down. I only wanted to scream.. Nothing came out. Electrodes were connected and I could follow my heartbeat on the monitor. The anaesthetist said: „Your poor little heart is racing so hard. Give me a second “ He shot something in my veins and I started to go blank. I still wanted to say: „No please don't, I don't want to ... I'm so scared... Where is my mother???“, but nothing came out and then everything went black.
Anxiously and confuses I woke up. It was cold. Around me were many devices and two nurses as well as a doctor. I could see an old woman who groaned and moaned all the time. A hot air tube was placed in my bed, and warmed me up a little. Cables and tubes were coming out of me everywhere ! The nurse came to me and said: „Hello, there..“ I could not move. I felt paralyzed. If no feeling had for nothing... I floated away again. I was woken up by an awful pain. I shouted. A doctor came and said: „I'll give you something for the pain, but it didn't help much!She gave me something again. I cried and begged her to please help me! She said something that I didn't understand and injected something into the IV. Once more my world turned black...
Part 9 "The pain"
When I awoke again, I was already back in my room. My friend sat beside the bed and looked at me with big sad eyes. I was pretty much druged up with painkillers and stuff. Luckily I had no pain what was already good. A nurse checked in to look after me and asked how I was feeling. I said: „I cannot say it yet.“ Everywhere tubes were hanging from my body - drainages, drips and ECG observation. I felt totally castigated. A doctor stepped in the room and said: „We had to operate longer. There were a few complications. You have lost a lot of blood. We had to stabilize you with a blood transfusion.“ I couldn't really understand all that really what she was talking about, I was way to stoned. A few hours later, it started hurting a lot. I can't describe pain really. It was like as if I was burnt living. Everything was what between my legs, only hurt. I rang and said: "Please, give me some pains meds. I can't stand it any more." The nurse added something to the IV, however, the pain didn'T stop. She left the room and came back with a stronger painkiller. This time it was morphine. She injected it to the IV. A while later I had to vomit like crazy due to infernal nausea which had overcome me. As I vomitted, it felt like my I was being ripped into pieces.. The pain was really hard to handle and I felt so weak.. Even the morphine could not relieve the pain. They decided on a PDA, they put a catheter into the spine and injected painkiller. I got my PDA and pain went away, unfortunatelly I couldn't feel my legs either. I was paralyzed from the hip down. The doctor walked in in the evening and told me that tomorrow we'll have to look at the wound. What I was to expect, was beyond my imagination. My femininity was destroyed in the most crude way you could only imagine. Vulvectomy and it's results …
Part 10 „Change of dressing“
The next morning the nurse came in very early. The night was awful, because turning from one side to the next was extremely exhausting. I knew exactly what was up today, the bandage that had to be changed. OMG. I was afraid of what I would see. I mean, I had a catheter in my bladder and the huge wound between my legs. The nurse smiled at me and asked me if I had gone to bathroom yet this morning.. I looked at her and pulled up my eyebrows. „Uuuh NO, how, was I supposed to have done that, I couldn't even get out of bed...!?“ She said: „Well, you do have a bed pan. I just thought to myself, well fucking fantastic, a bed pan.. The nurse washed me and gave me tooth brush and paste so I could brush my teeth. I felt sooo helpless and small. I didn't feel like it was me. After breakfast the Doc came. My heart beated faaaast. The Doc asked me how I was feeling.. I said: „Well what do you think, I feel like??!! He said:"let's take a look at the wound. I started to tremble and thought: „Oh God, please don't ...“ I layed down flat an the nurse cut open the net panties that they had put on me. There was blood an idodine everywhere. She spread my legs apart. I felt so ashamed. I was laying there, nude with 5 pairs of eyes staring between my legs.. The doctor removed the bandage carefully. I cried because of the pain and humiliation. The Doc explained quickly what they had done: We have did a vulvectomy on the left side. Inner and outer laibia were removed as well as a part of the left vaginal canal and perineum. As far as we can judge, the area is cleaned.“ I did not want to look, I could hardly move or even breath. But it simply overcame me, I had to look.. I asked for a hand mirror. Shaking I took the mirror and glimpsed down on what they had done to me. I could not look away. Everything was swollenand and blue. Tubes came out of me. 126 stitches in three layers. I was horrified. It was all gone.. The whole left side. Just a big nasty wound -EVERYTHING was gooone!!!! I got sick to my stomach and cried bitterly. I felt dirty, violated, almost raped. This was definitively not me any more I. Inside I felt dead. The doctor sat down beside me and said: „I know, it looks bad, however give the whole thing a little time.“ I stared right throuh hin and thought: „What I simply cut off your penis, how would you feel?“ He got up and said: „Everything seems very good..." The nurse cleaned the wound, and put on a new bandage. She also changed the urine bag. Then I was left alone again with my horrible thoughts!!
Part 11 „NO, not with me!"
After days in the clinic, the circumstances became clearer... I had gotten used to the pain. Which could have been the morphine. An extreme compulsion to take things into my own hand overcame me.. I imagined, a cancer cell is minimally small, this little bastard will not force me on my knees!!! So much in theory.. In real life it was a little harder than that! After I could move my legs again I wanted to get up for the first time! Uhh, OK let's do this, and get out of that shitty bed.. A nurse helped me sit up. At that moment I regretted it already and asked for more morphine!!! I thought to myself „stupid Myriam, don't always try to play the strong girl.. When I sat at the edge of the bed on one butt cheek I noticed how weak I still was.. Everything started to turn... Oh no, not with me I thought. I will get to get up, comes what may!“Tears started running down my face, because I was in so much pain, ist was almost intolerable. The nurse asked me if I would like to wait. I looked at her and said with an extreme rage in my voice „NO!!! I WILL GET UP NOW!“ I breathed deeply, the nurse reached under my arms and said me „look at my face, don'T look down. I fixated on her face, held my breath and pilled myself up. Tears were running down my face, bit I wasn’t crying. I was up. I stood there with shaky legs far apart, clinging to the nurse, but I was STANDING!!