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

    I Will Be A Better Mother

    There are women who become mothers without effort,
    Without thought,
    Without patience or loss,
    And though they are good mothers and love their children,
    I know that I will be better.

    I will be better not because of genetics
    Or money
    Or because I have read more books,
    But because I have struggled and toiled for this child.

    I have longed and waited.
    I have cried and prayed.
    I have endured and planned
    Over and over again.

    Like most things in life,
    The people who truly have appreciation
    Are those who have struggled
    To attain their dreams.

    I will notice everything about my child.
    I will take time to watch my child sleep, explore, and discover.
    I will marvel at this miracle
    Every day for the rest of my life.

    I will be happy when I wake in the middle of the night to the sound of my child,
    Knowing that I can comfort, hold, and feed him
    And that I am not waking to take another temperature, pop another pill, take another shot
    Or cry tears of a broken dream.

    My dream will be crying for me.

    I count myself lucky in this sense;
    That God has given me this insight,
    This special vision
    With which I will look upon my child.

    Whether I parent a child I actually give birth to
    Or a child that God leads me to,
    I will not be careless with my love.

    I will be a better mother for all that I have endured.
    I am a better wife,
    A better aunt, a better daughter,
    Neighbor, friend and sister
    Because I have known pain.

    I know disillusionment,
    As I have been betrayed by my own body.
    I have been tried by fire and hell
    That many never face.

    Yet given time, I stood tall.

    I have prevailed.
    I have succeeded.
    I have won.

    So now, when others hurt around me,
    I do not run from their pain in order to save myself discomfort.

    I see it, mourn it, and join them in theirs.
    I listen.

    And even though I cannot make it better,
    I can make it less lonely.

    I have learned the immense power of another hand holding tight to mine,
    Of other eyes that moisten
    As they learn to accept the harsh truth
    When life is beyond hard.

    I have learned a compassion that only comes by walking in those shoes.

    I have learned to appreciate life.

    Yes, I will be a wonderful mother.

    -Author Unknown

    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

    Falling Snow

    As I lay in bed recovering from the now hopefully complete treatment, the weather outside my appartment window changed. The oppressive heat of summer gave way to the oranges, browns and golds of leaves of Autumn. When I got out of bed and shuffled over to my window to sit for a while on the windowsill and breathe in fresh clean air, I looked up and could see crisp blue skies of the Fall.

    Still I rested, as the first glistening snows danced in the air under street lights outside my appartment, Again I watched from my windowsill as the snows fell, think, heavy, beautiful.There is something so peaceful about a new snowfall, the world becomes so quiet, the city sleeps, under a fresh white blanket. With a fresh snowfall, the world feels clean and pure again.

    It was now November, eleven months after the first diagnosis, eleven months that had changed me forever. Initial treatment complete, it was time to have a PET-CT scan to see if the treatment had been successful and should it appear that it had,  to take a first control scan, which would then be used at six monthly and yearly intervals to monitor my body for changes.

    I walked to the clinic through the snow to have the scan. It was the same clinic where I had dropped by in the evenings, same time every evening, for help with my daily ivf injections when I just couldn’t face sticking another needle into my already massively bruised thighs. It was the same clinic where I had my surgery, I walked quickly through the glass door and past the waterfall in the entrance, trying not to look around in case I would see pained, desperate ghosts of myself, pleading to me for help with the sunken green and darkened eyes , eyes I knew too well and still recognized now,  in the places I had haunted. I faced straight ahead and went downstairs to the nuclear medicine department, where scans are performed.

    A scan, when one puts aside the psychological worry of what the results may say and more than that, what the results may mean, is a comfortable physical exam. I have blood taken, not quite sure why, just why not I expected was the logic, then I had an IV placed at the top of my inner lower right arm.They gave me a radioactive tracer drug, then told me to lie as still as possible whilst the tracer soaked into my body, showing any areas of activity there might be. Alessandro was with me but soon got sent upstairs after the doctor heard us indulging in some very gentle joking around and expressed concern that the giggling parts of me would light up on the scan. I relaxed in a comfy chair trying hard not to consider the magnitude of the scan and the soon to be results.

    I waited an hour then went through to the room with the big PET-CT scanner machines. Its a long tube structure, I lie on a bed, which is then raised and moved into the tube, head first, so that I am completely surrounded by the scanners. Unlike other medical exams, I find a pet scan quite relaxing and unintrusive. I am given a dressing gown to put on over my underwear, not a hospital gown under which I would be naked. As I lay down on the bed, the nurse put supports beneath my arms, which I hold above my head, and my knees. She puts socks on my bare feet and wraps me up in a blanket, tucking me in a cosy blanket parcel. Then the machine is turned on, the bed is raised and slowly reversed into the circular tube that the machines surround. I dont mind this process at all. Its not claustrophobic because the tube is open at both ends, either your legs or head and arms will be out of the scanner at any time. A clever nurse told me to close my eyes at the moment the bed raised and first went into the tunnel, so that it would not seem so scary and oppressive and she was right. Then for the scan itself, the machines make whooshing sounds around you, the bed moves back and forth through the tube and occasionally a disembodied voice asks you to take a deep breath and hold it and then breath normally. The machine makes a loud, rhythmic whooshing sound. It sounds like the waves of the ocean touching the beach. It’s acually quite a relaxing test, when one ignores the potential for the results. This is exactly what I do. I pretend I’m at a spa. I close my eyes and I’m by the ocean.

    …”She walks along the edge of where the ocean meets the land, as if she’s walking on a wire at the circus”…

    After the spa through, there is a wait for the doctors to assess the slides, to decide whether they see any evidence of disease or whether treatment has been successful.I try to lie down again in the comfy chairs and be calm and not think of anything, whilst I wait for them. He breezed in after about twenty minutes and said Its all good, the treatment has worked and I see no evidence of disease. I don’t cry with relief, as I expected I would, I just stare at him. “So”, he says, “come back in four months and we’ll do a follow up check”. “Thats it?” I ask. “That’s it” he smiles. Then he breezes off.

    I walk out of the clinic in a daze, thinking, I’ve just been given four more months to live, in health. I forget to avoid the ghosts and I don’t see them anyway as I think of those four months and how I am going to do something with them, I’m going to live them.

    I walk back to my appartment through the falling snow. I don’t have an umbrella and the snow lands on my face and eyelashes in huge heavy snowflakes.

    “A snowflake fell and it felt like a kiss, now I’m alright”


    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.