Who do I want to be?

Post Secret - Cancer Survivorship - IllDecideWhoIWantToBe

 

Survivorship is a delicate term. After all, aren’t we all just surviving? Aren’t we all just living scan to scan?

After many painful, blurred, shocked, sobbing months, after endless days of strangers walking into rooms to pierce my delicate skin with needles without explanation, intrusive examinations, one diagnosis after the next, scans, walking lost and aimlessly into the park and crying in the rain, one surgery after the next, not one day or night free from these endless pains, labels that I mostly was spared due to my navigating this new nightmare reality not only in a state of disbelief, but in another language, I discovered that I had forgotten my own name.

My own name.

At appointments, on medical notes and later in hospital, I am called for, referred to or physically pushed around as if I was not human when pain or inability to move despite all my physical effort prevents me moving, as “Madame”. There was nothing rude in this day to day, my bank statements had made me giggle given the bizarre combination, but otherwise I lived, worked and studied in a first name environment (note to self, learn first names of all potential nobel prize winners who may just sit down next to you at lunch, introduce themselves using their own first name as a friendly retired professor and find their hour taken up with a lovely conversation not about discovering flavours of neutrinos, but instead the snow on the Jura and what a pretty day it was). Even then, albeit to the doubt of those within a fifty metre radius, I knew my name.

After everything changed, and everything changed, I became “Madame”. I have so much to focus on, to block out, to endure, to remove myself from, that whilst the irony and sadness of being referred to by an adult’s title in a world of adults more than twice my age that no adult with their opportunities and experiences behind them, their support systems in place and their experience closely recognised should experience, I was the outsider, the sad one, the child who needed cared for amongst this. I go to my appointments with a teddy bear and the seat next to me is empty. I look down at my hand and count the unbelievable on my fingers and thumb. My survival chances. I look at my hand, five of me, I grasp the two of me who will die. I am 27.

I am the one the doctors become emotional over, from sadness, to arguing amongst themselves, to shouting at a confused me, to strangers writing in formal emotionless reports of an incredible sad case and poor girl. I was the one they became attached to and this was not lost on me. I couldn’t be this one off sad case. Tears fall, I continue.

After months upon months, I realise I have forgotten my own name. I was asked and I couldn’t remember. I didn’t know.

My name, with my identity, was gone.

This is what this illness does, an illness I deny a name not because I have forgotten, simply because it does not deserve one.

It strips you bare. It takes you to places of yourself that never before existed. It gives you no choice but to continue on your hands and knees, in the street if you have to and often, unabashed, as what else can I do. I had to. It reduces you to unrecognisable. It takes away your intimate personal dignity, your hopes, dreams, your work, dedication, your relationships, your choices, your body, everything that you ever have been, everything you have worked for, everything that you were ever to be are gone in that first instant.

As time passes and your weight drops as you can no longer eat and your muscles waste away, as you become a chart, a room number, everything of who you ever were is slowly and inexorably shed too. In my case, I found that you even lose your name.

My doctor told me once, “This is what cancer does. It takes everything”.

I didn’t say that it could. I didn’t agree to any of this.

I noticed my own choice of language during this time and was so consistent that it impressed upon the small circle of friends who were near. “What is happening with me”, not “What is happening to me”, were my words when the description was required. Nothing happens to me without my permission, unless I let it. As frail and physically broken as I am, as much pain as I am in, as emotionally distraught as I was left, still, I am the one who chooses. Even if I choose that it is too painful, too much, it is my choice.

I spoke of challenges when really, there are no words for the horrors that I and so many others faced. I drop the word “need” from my language. A little bit of food would be a helpful, but I do not need much and I can manage without, I have to as eating becomes impossible or causes many hours of agony and painful sickness. My fridge, once welcoming for guests and carefully stocked for me became a storing place for medication in syringes. Shelter is useful, but on returning to my studio apartment after a month in Vietnam, where four year olds slept piled upon each other on wooden slats of old beds and babies in metal cots that resembled cages, I recall looking around on the spacious expanse and thinking that six of us could live here so comfortable, with so much space. Six of us. I will never forget that thought, my complete change of perspective and complete disbelief, as I looked across the space in the moonlight.

I slept on tiled floors in Vietnam, but I had a pillow to make a support of, I slept in dark, dirty overcrowded rooms of smiling faces of girls in Morocco, I slept in the mud in a Refugee camp in Africa, where my shelter was missing two walls. On each occasion I was one of the richest people in the area, not because of my huge credit card bills that I could no longer pay, nor my crucial medical costs that I could no longer find a way to pay for, not because I had no idea if I would see the months after. It was because I had a mosquito net. That was all I noticed, that privilege I had that others did not.

Meanwhile, the verbal labels for which I have so much distain and cause so much distress to not just myself but to so many, thoughtless labels that reduce humans to nothing but upsetting words, I refused them. I noticed that they were never used around me or to me. They must not have suited me so well. A skinny tearful staggering wreck perhaps, sometimes sobbing so loudly that a distressed neighbour would appear at my door in tears, more often just sobbing curled up in a corner alone. Not able to climb the steps to my therapist’s apartment, but looking up and smiling as I used the handrail to pull myself up each step, smiling as I was comfortably lapped in the park I used to run around by elderly people, walking out into the road without looking as I was sure it was fine.

Saying thank you for the few but immense small moments of kindness that I know only I remember as I felt the difference these tiny moments made to me, then holding each of these people as close to me as I possibly could for as long as I possibly could, as I knew they were angels.

I really never was very good at being a victim.

My doctor also once said to me as I joked ironically over my complete collapse of physical appearance, “Slowly, just slowly, maybe one day you’ll be able to start taking just tiny parts of yourself back”. I was still working on carrying my handbag. I take coins out of my purse to make it lighter. Walking distances takes so many times longer I could not count, or particularly care, I was upright. Myself back through physical appearance, colour my hair, put on eyeliner and suddenly I am considered absolutely fine?

Is this all that cancer survivorship is about? I was a twenty something, not eighty something. Was that all that was expected to be left of me?

There had to be so much more. I needed so much more. Something, someone, as many somethings and as many uniquely important someones to make it all worthwhile.

That was my goal. I didn’t know exactly how I would achieve it, or how long it might take, but I knew what I wanted. Here is where I have discovered I differ a little from many others who have had similar experiences, as scattered and isolated as we are. I decided that I wanted to be grateful that it had happened. Desperation and Inspiration. Where is the line. To choose one day be glad it had all happened. To start with complete acceptance and to choose everyday to find a way to be glad. To trust that one day I will be so grateful. To trust that it will take me to the life and people I could never have imagined possible. To believe that one day my story will be nothing but a life bathed in light and love.

Desperation and Inspiration. It is my only desperate, inspired way to cope.

Otherwise, I didn’t really take much back of what had been a lovely, intelligent, kind, warm and popular girl. I had developed PTSD http://www.mind.org.uk/ from the outset, undiagnosed of course, and was experiencing twenty five of the twenty six symptoms, intensely and daily. The only symptom I did not have, tellingly about my character, was anger. The others however, they hit me hard and I knew nothing of the condition or causes, or how textbook a case I was. All that was, amongst all sort of goodness knows what else, was simply the way things were for me and I found my ways to deal with them. Most, if not all, made being the girl I was before impossible.

That innocent girl, I just wasn’t her anymore. I had seen to much, knew too much and felt too much to ever be her again.

I was a blank canvas, quite sure I was on very limited time. So without thinking, I did the only thing I could. Fragile and weak, I had more strength than I knew possible. Terrified to my core, I had more courage that I knew could exist at an age in a lifetime such as mine. With the weight of the world on my shoulders, I was free.

So I listened to my instincts. I tapped into my abundance of complex courage. I was no longer the girl I used to be. I listened to my soul. I was pure.

Mine for the making. I choose my thoughts, no matter how much of a battle that can be. I choose my habits and I choose to battle to adapt and appreciate them. I had to choose who I wanted to be, how I wanted to think. I had to find a way to survive. I had to do it on instinct alone, as there was no other way.

It’s a blessing really, to be a free, with enough of an ability to move and the will to find a way past challenges, laid completely bare, stripped to nothing and left to choose, who do I want to be?

An illness can take everything. Everything.

I choose my thoughts, my morals. I choose who is important to me. I choose love, I chose patience, I choose kindness.

I’ll decide who I want to be

 

      I’ll decide who I want to be http://postsecret.com

    Do the things you think you cannot

    “You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.”

    – Eleanor Roosevelt

    Zapped

    After surgery, I was to have radiotherapy. My doctor, having spent countless hours trying to talk, encourage, coerce, drag or scare me into any treatment at all, began to softly explain that I didn’t absolutely have to have the radiotherapy as the illness should be gone, but as research showed it would improve my chances and it was an extra safety measure, he would recommend it. He sat back, surprised and pleased when I stopped him to say of course I would have the radiotherapy. “You are a different Lucie” he said. “I’m already defeated” I said.

    So the radiotherapy was to be twenty five sessions, one a day over six weeks, most week days with weekends off to recover. The total dose was 50 gray and I was to have 2 gray per day. I was given a couple of weeks to recover a little from the surgery and then have the radiotherapy. The clinic was five minutes walk from my appartment and I had no idea it was there. All the years I had lived a lovely happy carefree life a few minutes away, people were coming there for treatment, from sunrise to sunset. I went in for a CT scan first so they could map my body and target the dose precisely and evenly. A pretty nurse gave me three tiny dot tattoos on my hips, that would be used to line up with beams from the machine everyday. The doctor told me there would be quite severe side effects from the treatment, especially as it progressed, but that I should recover completely from it and “forget I ever had it”. He told me about a patient he had who was a ballet dance teacher, she had gone to classes in the afternoon after treatment in the morning. Or at least that’s what I heard, later he said he told me she went back to teaching, he meant after all of it, not every day. The ballet teacher who went to class in the afternoon would have me confounded with in a few days.

    So about six weeks after the surgery I was deemed strong enough to be beaten down again and the radiotherapy began. The logistics of radiotherapy are easy when you are a day patient who walks in and out. I was a different Lucie by this point, I was managing to sleep a little. I got up every day, walked to the clinic, waited maybe five or ten minutes at most, went into the treatment room, lay on the table, the nurses would leave the room to hide behind several feet of lead, then red beams from the wall would match up with my tiny tattoos and the machine would move around me, above, below, left, right. It took a few minutes and was painless. Nothing touched me. Then I said “Merci, A demain” and got out of there, the whole thing taking only about twenty minutes. In the waiting room though I saw that not everyone was getting through this stage of their treatment so lightly. Some waited connected to IVs of drugs. Some arrived on beds from the hospital looking very unwell. Some had very short hair, just beginning to grow back. Whilst I had been through and was still going through a very difficult and painful loss as a result of the illness, it seemed that for me this part of the treatment would be the easy time, but not everyone there was as fortunate. I was the youngest by far.

    After one day, I felt mostly the same. As bad as I was feeling in general after surgery and stress and weight loss, but not notably worse. After two days, I felt mostly the same again. On the third day I went for a run round the park, not graceful or strong, but I put on my shoes and ran round the park. The nurse raised her eyebrows in surprise when I told her this the next day, when I met with the nurse and doctor to note weekly progress. I thought of the ballet teacher and figured it wasn’t going to be so bad. A bit of tiredness and a bit of an upset stomach, nothing more.

    After day three I found that my stomach was beginning to get upset and I was feeling sick, and when I walked I had to hold onto railings for balance and to stop me falling over. By day four I found that my feet weren’t moving forward when I tried to walk and my stomach was very unhappy. By day five, if I didn’t know any better, I would have thought I was dying, or quite possibly already dead. I was so, so sick, violently sick, all, day, long. My insides burned, I had stabbing pains and cramps. My trips between bed and the bathroom to be sick were so frequent that it stopped being worth the effort of the few steps back into bed. I took my duvet and wrapped myself up in it on the bathroom floor instead. I also was quickly becoming absolutely, completely exhausted. The exhaustion caused by radiotherapy is sometimes described by the word tiredness, but really, its nothing like that. I was so completely knackered that I couldn’t stand up, I was too exhausted to move, to listen even to think. All I did was throw up what felt like liquid fire and when I wasn’t throwing it up the liquid fire it was finding another way out. When friends came to visit, all I could talk about was throwing up and diahorrea. I was permanently taken aback by how severe it was, it was all I could talk about. “How are you Lucie?” “Diahorrea!” “Do you want to eat?” “No, diahorrea!!” “What have you been up to Lucie” “Diahorrea! All day!!”  Ocasionally the unshockable and unshakable Alessandro would take me for a gentle walk around the park. One lap at a slow pace. We laughed when old ladies over took me and at the thought of me running laps only days before, talking of a ballet dancer who was obviously wearing a lead tutu to her treatment.

    Alessandro, along with a few other people, were my heroes during this time. Now that my boyfriend had disappeared, my friends stepped in. Ale came to my house every evening, all the way across town, taking his motorbike to work rather than his car so he could make the journey more quickly. Ellie came by with pre made cups of tea most evenings. My brother called me every single day when he got home from work and we spoke for an hour. My Dad called me every evening and we spoke for at least an hour. A couple of other friends who I hadn’t seen for maybe six months started stopping by occasionally, bringing tea, taking out the rubbish that I could not lift or mopping the floor that I was too exhausted to clean.

    So the treatment continued with much a sameness, it was brutal and I was very ill. But I did get to go home in between treatment and be in my own apartment rather than anywhere else, to lie on my bathroom floor wrapped in my own duvet. After three weeks, my doctor decided that my side effects were so severe that the treatment had to pause for me to recover. I had lost even more weight despite my efforts to eat. Trust me, it takes a very brave girl to take two gray of radiation to her pelvis and stop by the boulongerie on the now twenty five minute shuffle home, but I did try. Inevitably though, my already tiny frame dropped more kilos, so the treatment stopped for a week.  I was disappointed as I was counting down the sessions, but I was very, very sick, so I took his advise. “You are a new Lucie” he said. “You told me the bloody ballet dancer was teaching class in the afternoons after her treatment” I said. “Ah no, she went back months after. I stopped her treatment too” he replied. “Have a rest, come back next week”.

    The amazing thing about radiotherapy, alongside the fact that it can be invisible yet make you so violently, painfully, exhaustingly, explosively ill, is how quickly the effects wear off when it stops. By the end of the week, whilst I was still very unwell, relatively speaking, I felt almost unbelievable better. It was encouraging to know how quickly the severe effects could wear off.

    So I went back to treatment. I threw up, I had diahorrea almost exclusively whilst awake, the logisitics were a challenge now and again, but I managed. I still talked about nothing but diahorrea. Guests in my appartment, callers on the phone, diahorrea. Alessandro began a campaign to have me eat more and began preparing food justa lika Mamma makes in tiny portions for me to eat. The first evening we ate together, rice and chicken, I had a non spiced, non flavoured, tiny piece of chicken with a spoonful of rice, which I didnt finish, whist my friends had the regular version. That evening I was up literally all night, throwing up more violently than ever before. Ellie and I laughed and teased Ale for his Italian cooking, but we were to learn that the Italians take their cooking very seriously, especially when its one of Mama’s recipes. I wanted to ask how it counted as a recipe when it was plain chicken and plain rice, but I was in the bathroom throwing up, so had to let it go. Alessandro sulks to this day when reminded of the meal than made me throw up for a whole night. In truth, although I laughed about it later, I did spend most of the night in tears. The sickness was so violent and so repetitive and so out of my control that I really did feel like a patient of the illness, which was not normally how I saw myself. In fact I think that was the only time I felt that was what I had been reduced to and nothing more. I never told Ale the way I felt that night.

    But it passed, like all things do, and within a day or so I was back to talking endlessly about diahorrea.The break did help and although I did get very ill again, it never quite got to the extremes it had when the break was ordered. I was sick and exhausted, but I was counting down at last. Although the battle was by no means over, it would be good not to be so dramatically sick and exhausted for any longer.

    There are no problems, only solutions

    The illness came to me in January. It began with a small abnormality, a small number of changing cells most likely, usually go away on their own, easy to treat if we so desire, nothing to worry about. I knew right then, immediately, I just knew. “I’m not having the surgery” I said, not really listening to anything else he was saying. He rocked his head back, leaned back in his chair and laughed, then adopting his serious voice “This will not effect your fertility at all”. He took some cells and some blood, to decide whether he wanted to treat or whether it was so minor we should just leave it to correct itself. “Nine times out of ten we do nothing, there is nothing to worry about”. I already knew.

    I left in a daze and went on to work, I remember what I was wearing, dark blue jeans, a light blue sweater. A friend saw me arrive, saw my dazed face and the plaster on my arm from the blood test. “Oh, you are pregnant!” he said. For the first time in my life, I wished that I was.

    Two weeks later I went back for the results. It was more serious than the doctor had predicted, high level changes or possibly more, localised and noninvasive. This is still nothing to worry about, we will treat it he told me, with a minor surgery to take away the bad cells. So we did.

    Two weeks later I went back. I was slimmer already, without realising it I had already stopped eating. “It’s bad news” he said. I assumed he meant we didn’t remove all the cells and needed to repeat the process to take the remainder, as I had been told this can happen. No, it was not this. The cells had penetrated and were in numbers that no longer suggested our previous worse case scenario. It was invasive. I didn’t understand what this meant at the time, still protesting that another small surgery was all that was needed. I was the unlucky one he said.

    No one ever told me, “You have cancer”. But I did. I was 27 years old.

    I was sent to see another doctor, this time there was no two week wait and I saw him within days. There is a possibility we can save your womb he said, opening my files. Ah no, he then added almost instantly, we cannot. “Dont even suggest it” I said, interrupted, holding my hand up to gesture to him to stop. I recall asking him how long I had left. “A year, maybe two” he replied. The rest of the appointment is a blur. It was March.

    In the next weeks, refusing to believe what I was told and with my life collapsing in around me, I saw endless cancer specialists, some at my request as I desperately searched for another way, some I was sent to by my oncologist, who in my desperate shocked blur I had not fully realised was an oncologist, in attempts to convince me that there was something wrong. I collected all my paperwork meticulously, obsessively, researching new treatments, sending it to specialists and pioneering specialists the world over. The responses were always the same. A genuinely sad no.

    The fertility aspects offered some hope, I would remain fertile, just unable to carry. I would use a surrogate, it would be no big deal. After all the bad news I was unable to accept this. I had been told at every step that I had nothing to worry about, then at every step the opposite was true. So I asked if I could do an ivf cycle and freeze some eggs. Sure, but there is no need they said. In truth I needed to do something and I was not willing to do what they asked. I could not go back to my life as it was before, as I was unable to eat, sleep, or focus on anything else.

    So I embarked on an ivf cycle. I have heard many complaints about this process, but in truth I found it easy. I had injections everyday, blood tests every second day, scans twice a week. I then flew to California, to meet with a fertility clinic there. The USA has more progressive laws and technology for egg freezing and surrogate use, so I had made the choice to travel there.

    I arrived in California with a small white leather handbag holding pyjamas, underwear, syringes, drugs and my teddy bear. I no longer needed anything else material. A friend whom I had met in my sunny days as a student at the University of California had put me in touch with her brother and his young wife, who met me at the airport and took me to their home.

    …..B&W…..

    Once I arrived back in Switzerland, I waited two days, then went to hospital. The nurse came to my room and asked if I was ready. I was sobbing already and said No I could not do it, I would not do it. She gave me medication so that I would sleep, telling me I had to do it and that the medication was so strong that I would sleep and would not need to know. I tried to calm down and rest but the sobbing and panic consumed me. I did not feel calm or sleep. The nurse returned and was shocked to find me awake, saying in French that she did not think it was possible. Again, sobbing, I said No, I could not do it, I would not do it. She began to take me, I sobbed, I was shaking, I whimpered, I said No, please, No. The nurses were crying too. When they passed me over to another set of nurses, I grasped the blouse of the nurse who gave me the medication and said “No, Don’t let them take me”. She undid my grasp, I grabbed her with my other hand, she did not look me in the eyes, tears streaming down her face, peeling my hands away from her again and again as I begged her not to let them take me. All the nurses were crying. I remember the sparkle of the diamond earring od the nurse I begged the most desperately, who cried the most tears. Then she was gone.

    I was shaking and still sobbing, recoiling from needles and cold hands. No, please. Someone gave me an epidural, I was shaking so much I had to be held still. At the same time there was an IV in my arm. I do not remember the anaesthetic taking effect.

    I woke in the post op room. I was wrapped in blankets and wires. I knew immediately. A male nurse came to me as not for the first time, I was sick from morphine. He put his face close to mine so he could hear my tiny voice. Is it done, I whispered. It is done, he said. In the next room a baby was screaming. Is that a baby, I whispered. Yes, born two hours ago, he said. Close the door, I said. Excusez nous Madame, Excusez nous, he said and softly closed the door.

    It was the first, and last time, anyone ever said sorry.

    Next thing I know I am back in my room, it is dark outside, and I am alone.

    I am crying, sobbing, whimpering. My heart is exploding. My primal instincts are ripping me apart fibre by fibre. Despite an epidural, a morphine IV and sedation drugs, I am in terrible pain. I can barely focus my eyes on the outline of the Saleve against the night sky, I see only the blurred blue light from a lookout post high on the mountain. Alone in the dark room, curled up in pain through my body and ripping my soul, under the dark night sky and the blue light on the mountain, one by one, I feel my babies die, that night.

    And now, after telling of everything but the illness, after refusing to even say its name, I must tell of all of it.

    A Poem for Lucie

     

    I have many hopes large and small for you.
    One of them is this:
    that when a friend of mine succumbs to cancer,
    you will be the friend who does not.

    I hope, and believe, that this hope is well aligned with your hopes for yourself.
    The only part I do not take for granted,
    for I have no doubt that you will live a life that is wonder filled and wondrous and long,
    Is the friendship.

    This is harder for me to predict, and what should happen is not so clear.
    We move on; we lose contact with old acquaintances,
    sometimes with regret, sometimes without;
    sometimes this is simply an artifact of the inexorable passage of time.

    I lost another friend, the wife of a friend,
    And a woman not so very much older than I,
    To pancreatic cancer.
    I attended her memorial service just before heading to Arizona.

    I remember telling you last February
    That I had two friends with pancreatic cancer.
    Now I have none.

    Today, anyway, it seems to me that when I lose a friend to cancer,
    The reassurance that another friend who has been through cancer
    Still lives
    Would be a comfort.

    You could tell me what you had for breakfast, what you see out your window,
    Anything at all would serve the simple, blessed purpose
    Of letting me know
    That you are somewhere, anywhere, alive.

    I think of you in such a role because you have become
    The youngest of my friends to survive a serious cancer
    (older survivor friends can’t be counted on for this–they may die before I do),

    And because you and I have already talked
    About subjects not so different than this.

    I know that you will outlive me by decades
    And if someday news of my own death
    (which is not, to the best of my knowledge, imminent, so don’t read anything between the lines)
    Reaches you,

    Maybe you’ll dance,
    and maybe children will ask you why.

    -DM