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
There are women who become mothers without effort,
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 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.
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.
“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
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”
In July 1978, less than two years before my birth, the first baby conceived by IVF, in vitro fertilization was born. Louise was born in England. More than three million children have been born using IVF in the years following. Six years later, the first baby was born having been conceived using IVF with an embryo that had been frozen. The embryo became a baby girl named Zoe, born in April 1984 in Melbourne. The same year in Australia a child was born with the participation of two woman, one provide an egg as a donor and the other carrying the child in her womb. More than three million children have been born in developed countries using IVF in the years following.
Cryopreservation, where cells or tissue are frozen to subzero temperatures to a point where all biological activity is paused, plays a central role in modern IVF procedures. Oocytes, or eggs from a woman, can now be frozen, as well as embryos and sperm. Oocytes are more difficult to freeze and thaw due to the large amount of fluid in the oocyte cell. When fluid is frozen, it can expand, causing damage to the egg. A method of freezing where ooctytes are flash frozen using liquid nitrogen, vitrification, has been developed in recent years, to allow cryopreservation of a ooctytes to be a feasible part of the IVF process.
Oocyte vitrification has become a new method for fertility preservation in young woman who may no longer have a plentiful supply of eggs when she plans to have a family. The method is newer than freezing of embryos, which has been shown to have comparable success rates to fresh embryos, but emerging results are encouraging. The first baby conceived using a frozen egg was born in 2002 and since then the technique is emerging as a means of hope for young woman who may see their fertility compromised by necessary treatment or early menopause. Early studies have demonstrated that frozen eggs may result in a pregnancy rate equal to that using a frozen egg.
At last, some good news.
In March 2008, I was advised to have radiotherapy in addition to surgery as part of my treatment, to improve my chances of recovery. Radiotherapy to the pelvis will, without intervention, cause a woman’s ovaries to be damaged beyond recovery, so that she will both start early menopause and no longer produce eggs viable for a pregnancy, surrogate or otherwise. As a result, a select few specialist fertility surgeons are now are able move ovaries prior to pelvic radiotherapy, out of the intended field of radiation. Initially this was an attempt to avoid early menopause, but has the happy side effect that a woman may well continue to produce eggs, which can then be collected using an IVF procedure, to conceive a child.
Prior to this, I had read of egg freezing in news stories, but only in the hypothetical context of a healthy woman choosing to freeze eggs then pursue a career and adventurous life before having children later in life, after her natural fertility had reduced. I had no idea that freezing of eggs could offer a lifeline, literally a lifeline, to young girls diagnosed with life changing fertility relevant conditions. I was soon to become one of those girls.
My doctor told me that egg preservation was not necessary for me, as we would move my ovaries and therefore I would remain fertile and could just do an IVF cycle when I wanted to have a family, putting the embryos in a surrogate. This is true, but given the amount of absurd and unlucky things that had happened in the weeks prior, I was not soothed by this promise. As always, this path was not certain or guaranteed, just likely, and given the masses of bad news and luck I had felt in the preceeding weeks and months, I was not confident of landing on the most likely side of the line. My doctor happily referred me to a fertility specialist, in one of is many valiant and generous attempts to get me willingly agree to treatment. I saw the fertility specialist, a private doctor, the same day, while most cases wait three months to see him. As was to happen often in this time, I was the interesting case, a young girl, an unusual patient. I resented this as it just reminded me how extra unlucky I was to be the unusual one in statistics that said my case should not happen often, but it is true looking back that this very fact allowed me good access to medical professionals, personally interested in me and my case. Anyway, I went to see the Fertility doctor, he said sure lets freeze some eggs but maybe I should freeze them somewhere else, have I ever been to the USA, sure he’ll move my ovaries and while he’s at it he can freeze some ovarian tissue, just because he can. What, now?
Well, I would be freezing eggs with the intention of using a surrogate. Surrogacy is more common in the US than France and Switzerland where we were based, therefore we had to decide where to freeze them. IVF has to be timed with a natural cycle and can only be started on one or two days a month. We would have to wait for the appropriate day, so a delay of up to a month was possible. Usually this is no problem, but in the case where the IVF is being done for fertility preservation before urgent treatment, a delay is not good. I was very fortunate that the illness I has was considered slow enough developing, so that it was reasonably safe to consider a delay by some weeks. In some similar illnesses there is not a day to wait and no time for any preservation of ooctytes or embryos, or hormone treatment of IVF is likely to fuel the illness so cannot be used. For me however, a short delay and hormone treatment was a safe possibility. We did a blood test and realised that we could start a cycle that very day. There was less than ten percent chance this would have been the case. At last the statistics and my tendancy to be in the unusual case was starting to work in my favor.
My mind was already blown to new realms of normalcy and my doctor was finding this all very interesting and not in an average days work, so we planned an international cross continental IVF cycle. I would have the first part of the cycle with him in Europe, once the eggs were almost ready to be collected I would jump a plane to San Francisco, have them collected and frozen there. My doctor in Europe had contacts at a fertility clinic in San Francisco and was able to coordinate the efforts. The doctors in the US clinic were, for the record, amazing. They were flexible, positive and willing to work with me in this way. I had spent the last seven years talking about easygoing, smart and kind California life and my descriptions were coming to life now.
So I embarked on an IVF cycle. I have read descriptions of IVf as being difficult, stressful, uncomfortable, almost unbearable, but in truth, I found it easy. I had a hormone injection every day for about a month, the drugs come in syringes which I kept in my fridge where the food had previously been, I did the injections myself and really, its a tiny needle. Yes I felt it, yes it left some fairly impressive bruises, but with a little perspective, it was not painful or difficult. For the last couple of weeks I had a blood test every second day, which again is not a big deal once you get used to it, it was quite nice to get out for a walk really and if anything it encouraged me to eat and drink a little once I realised that my blood wasn’t going out of me if I was dehydrated. So we monitored the development of the follicles containing eggs using my hormone levels and a couple of ultrasounds, then once we anticipated they would be ready for collection within a week, I booked a flight to San Francisco for the retrieval.
My hosts and friends in San Francisco, Bryan and Whitney, and Bryan’s sister Tiffany who arranged for me to stay with them, deserve a story of their own. For here I’ll stick to the story of snow.
So, I arrived in San Francisco on a Saturday. I went to the clinic the next morning for blood tests and an ultrasound. My doctor in Europe had monitored the development of a number of possible follicles and eggs. All eggs have to develop at the same pace as there is a small window where an egg can be retrieved and used, but the final stage is prompted by a hormone injection, exactly thirty six hours before retrieval, so all must be collected at once. If an egg is underdeveloped it will not fertilize, if it is over developed it will be spontaneously released before it can be collected, or will not fertilize when collected. The process of IVF is one of monitoring and adjustment, to allow a number of usable eggs to be collected at once. When I arrived in San Francisco I had thought that there was perhaps four or five potential follicles developing in each of my ovaries, as this is what we had seen in the previous weeks in Europe. On the first day I saw a doctor in San Francisco, he ran the tests then told me from what he observed he thought there would be at best four or five eggs, most probably two, possibly none, and that in this case he would advise abandoning the cycle completely when there was no time pressure and careful consideration of whether the financial costs and potential false hope of a very small number of eggs were worth it in a case where time did count. I was devastated. This was a problem I had not anticipated and I had anticipated all the problems in the world it seems and I was just exhaused with things going against me.
I decided to go ahead anyway, as there was no other option except to give in, something I just could not do. My hormone doses were doubled and we carried on, till the retrieval was schedule for the following friday. We did the massive hormone injection thirty six hours before and I went for the retrieval. Bryan came with me and I took my white bear. For the procedure I had a sedative, I think because I was shaky they gave me enough that I don’t remember anything for the half an hour it took. As I came round, Bryan popped his head round the curtain smiling as always. “It’s good news”, he said, “do you want me to tell you?”. “Yes” I answered before he had finished even asking. He answered, in his soft, kind, lovely deep Californian voice, “Nine. You’ve got nine”.
I don’t remember what I said. I know I was elated. I had been desperately hoping for five, the best I had been told to expect. At last, my body and I had got something right. Not only right, we had kicked medical ass. The embryologist came to see me and said I had seven excellent quality eggs and two a little less mature but still very strong valuable.
Now the good news was just raining down like gold.
He gave me a photograph of them taken through a microscope and predicted an eighty percent chance of a pregnancy with them. As he drew his finger around the circles he said with a smile, “You could very well be looking at your future children there”.
As we left the clinic Bryan suggested a drive around San Francisco. I asked for the Golden Gate Bridge and made him drive us across one of my favourites places in the world on that beautiful sunny day twice. Twice for twins.