On the first day of chemo these delights came to me The most scary, bright pink pee On the second day of chemo these delights came to me Total exhaustion and some more scary bright pink pee On the third day of chemo, these delights came to me A very queasy tum, total exhaustion, but no more funny pink pee…
There has been an elephant in the room, and not one which sits quietly in the corner. It has been rampaging through the house causing destruction and damage in its wake. I wrote Skin Deep over many days and did not actually believe I would put it “out there” online but as I felt myself sinking deeper and flinching from those small incidents which are on the surface slight, with tears in my eyes I finally pressed the “bare my soul” button.
I do not really know what I expected from the post. Being honest, I had not thought ahead. The purpose of writing was to vent and pour out the distress in my heart. So I was astounded by the response to Skin Deep. As well as numerous comments on the post itself, I received personal emails and Facebook messages and a number of people here reached out with love and understanding. I had not anticipated the many thoughtful messages reassuring me that physical appearance is not the same as beauty. I have been emotionally overwhelmed and it has taken time to put my thoughts in order and prepare this reflection and learning.
As I read through and responded to the comments, replied to emails, spoke with friends who reached out and quietly reflected, the clearer a picture developed of a whole host of people struggling silently. So many live with constant debilitating side and after effects and swallow the assumptions that everything is behind us and rosy now. Many of us are silently absorbing assumptions of our appearance, while struggling with a variety of conditions which impact on how we look, so many of which are beyond our control. I had lifted the lid off some Pandora’s box.
I still feel fragile, emotionally and the wellbeing and appearance issues are unlikely to change. But I learned a great deal from writing the post, reading and reflecting on the responses and bringing together these thoughts into some key messages.
I am not alone
I am incredulous at the number of people struggling with these interconnected issues, in silence and isolation. We are dealing with a host of issues – side effects from many meds, after effects from current and previous treatments, disfiguring surgery, pain, destruction of functions including thyroid. We may look well but be living with debilitating conditions, or we may look unfit and unhealthy yet are following extremely healthy lifestyles as far as we can. In summary, as “cancer in my thirties” said in her comment
“many people fail to realize how horrible the side effects of our treatments can be — and how much they impact our lives each and every day”.
Even if I struggle with these, knowing I am not alone somehow helps emotionally and validates these feelings. However, another side is that very few of us expect or are prepared for such debilitating side and after effects. We should be grateful that we are alive – and of course we are, but that doesn’t mean that this is something that can be wrapped up and put easily in the past when we live it every day.
Far too many are silently living with this.
I did not intend to make people feel uncomfortable. My post did not point fingers at any individual but aimed to draw out the consistency of reaction. I particularly want to stress that I do not for a moment believe that there is unkind intent in many of the comments and looks I experience. My friend Becky wrote very powerfully of her experience and in particular placed it in the context here.
“Being called fat in SE Asia isn’t necessarily a negative thing. It’s quite acceptable here to talk about people’s size. ……………
In some countries, being told you’re big can be a compliment. I sense it’s not necessarily a compliment here, but rather an observation (perhaps without much judgment).“
It is so important to hold on to this, and try and remember it is more an observation. The challenge is that of course I come from a context where it is broadly offensive to comment on a person’s weight. And that is why it hurts. Purely and simply, I struggle terribly to be on the receiving end without it that stab of pain and shame.
It doesn’t matter how much I rationalise and understand – it still hurts.
I have found that not only writing and releasing these highly personal and innermost thoughts and feelings but then listening to the responses and reactions of others is helping me to process this. Chronic illness, mortality, cancer and the whole psychological and emotional and invisible side to diagnosis continue in my view to be underestimated even within ourselves. We are often caught up in our own pain and unable to see how enormously difficult for those around us themselves to deal with life-threatening diagnoses in their loved ones.
Indeed, I really did not have a clear purpose in my mind when I started on this journey of exposing my soul. I did not expect such a powerful reaction. I think that in the back of my mind, I was screaming silently that I wanted to be heard. To be understood. And not to be judged.
This path is and will continue to be painful. Yet for now, I can say that I do indeed feel heard. I feel far less alone. And I feel more understood. I hope that applies to us all.
The elephant is still in the room. I doubt if it will completely disappear. But it does seem to have quieted a little and become less obtrusive.
This is a plea to myself as much as it is to others. This is an appeal to each of us, to pause and think before we judge others, especially on appearance.
I know what you think when you see me, whether for the first time or as a longer acquaintance. I can read it in your eyes. I see the belief that I look the way I do because I do not care about myself, I am gluttonous and lazy. I know that look which betrays pity and blame combined. Which cuts into my soul.
I know that I have not worn my years kindly. But I do not think you know just how much I struggle with that, every time I look in a mirror and each time I see myself reflected in the eyes of judging strangers.
I do not want to have to tell in advance, that I know how it seems. As if I live a life of sloth. But I yearn to challenge that judgement, and preface a conversation by saying just how hard I push against the forces which shape me.
I will give you an example. I move increasingly awkwardly. Femara is a drug which decreases the probability of my cancer recurring or progressing. For which I am thankful. How can I not be? Despite the accumulating side effects which conspire to make my mobility increasingly constrained and painful. I push myself to get up and move about, despite the pain because I know it helps a little and that inactivity is an enemy. Despite that pain when I rise to my feet and the jarring pain in the first steps, which gradually reduces to an ache and awkwardness. But I can tell by your looks, that you think my bulkiness is causing this lumbering gait.
I hear comments on my weight and suggestions that I should walk a little. I know that the intent is not unkind, but still I fight back tears. I hate my defensive tone when I try to explain gently that I have cycled five kilometres that very morning, as I do most mornings. That I have swum half a mile, as I do most mornings. That I am probably fitter than I have ever been since my teenage years. The irony slaps me, knocking me sideways. I know you don’t really believe me. I know that because, if you see me by chance one morning on my bicycle or swimming, your expression is of surprise.
I can no long walk freely. My toes have retained that numbness of peripheral neuropathy from chemotherapy. I am frightened of falling. I stumble even in the house and earlier this year had one bad fall. Those numb toes caught on a paving stone, slightly upturned and I fell heavily on both knees. Those tender, already painful knees. My confidence has been dashed, and my love of walking is a memory as I pick tentative, cautious and painful steps.
Dear people, I had no idea that there were so many long term effects from treatment which has probably saved, and at the very least significantly prolonged my life. When I learned that my thyroid function had been annihilated by chemotherapy my initial reaction was one of vindication. Here is a major reason why I struggle with my weight despite being more active and physically fit than I have ever been. It is not sloth or gluttony. Zero thyroid function is a very clear medical reason behind stubborn extra pounds. Every morning before my day begins, even before I put on my swimwear as the sky slowly lightens, I have to take synthetic thyroid. Every day I take this, and will for the rest of my life. Any hope that this artificial medication would re-shape me was however dashed as the months after this bonus diagnosis and new medication slipped by without any sign of weight loss. An hour of exercise in the morning maintains a fairly steady or even mildly gaining weight. Any reduction in activity results in rapid weight gain. Which does not reduce no matter how active I am. This is sickening and frustrating.
It is human to judge and to make assumptions. We are wrapped in our social and cultural baggage which nurtures beliefs deep within us. It is also human to smart when we are on the receiving end of those suppositions.I know that I should accept the way I look. Even my doctor has told me I am doing everything right and that I should try not to be so hard on myself. That is one part of the question. The other part is how not to take it so much to heart when others are unintentionally hard on me.
And that is the one I can’t crack. I can rationalise the comments and looks, and can attempt to reassure myself that I am not who I appear to be. But I can’t stop it hurting. I can’t prevent involuntary sickening twist-in-the-gut reaction when yet another person remarks. That lingering sense of sorrow and shame which descends on my spirit. The futility of defending myself, knowing that it just does not appear credible, and minds are already made up.
Dear people, you do not know how much I hesitated to write this. How bare my soul feels putting these words on the page. How exposed and vulnerable this makes me feel. How sensitive and susceptible to more judgement as a result of disclosing my innermost anxieties and insecurities. How uncomfortable about such a self- indulgent outpouring.
We do not know what innermost struggles there are within each individual, hidden by smiles and a seeming lightness of the spirit. Painting a smile and crafting gentle words while the soul writhes in pain takes enormous effort.
To paraphrase a well known saying – let us aim to be kind to others , for we cannot know what private turmoil there is within each one of us.
As I boarded my flight to Bangkok last week, my colleague paused as we made our way down the aisle towards our seats. She had spotted a familiar face, U Thant Myint U, well known author (including The River of Lost Footsteps) and Chairman of the Yangon Heritage Trust. We were able to exchange a few words before taking our seats.
I had already selected the new background image, of the old Burma Bombay Press Building, but nevertheless that encounter probably played a part in my drive to share some of the many images I have of Yangon’s heritage and downtown area. This is an area which infuses energy and delight every time I visit. I have put together a gallery of images on the sister blog. This is a vivid, chaotic mix reflecting downtown life with its colours and vitality amidst modern and heritage architecture.
And a few words from U Thant Myint-U himself
Do call by Feisty Blue Gecko – in images: Glimpses of life and heritage in Yangon’s Downtown for an introduction to this fascinating part of town.
It has been another week of packing, unpacking, checking in, checking out, locking and unlocking the little travel bag which drew such a short straw when it was selected by me, and flying through soupy clouds. I have been offline most of the past three days while participating in a conference in Bangkok. I am returning to Yangon with a head full of ideas, a file full of papers and a wallet bulging with visiting cards. I have connected and re-connected with like minds and am wrapped in a blanket of enthusiasm and motivation.
As I move along, feet hardly touching the ground I realise that it is many weeks since I have changed my background picture. That says such a great deal about how much the image from the Malaysian jungle resonated with me and how long I wanted to continue to soak in those healing images and memories. But now it is time for a change, and the image I am drawn to is one I took some time ago, in fact probably around the time that I attended the first conference on this topic, weeks after finishing my heavy treatment and when I connected with Kirsty for the first time.
I love wandering around downtown Yangon amidst the living heritage architecture. I remember seeing this building, where the Bombay Burma Press was housed and being fascinated by it and taking many photographs. It just has to be shared.
It is a glorious building and conveys the sentiment I want to share for the coming days and weeks as a background.
Welcome again to my world.
October on the breast cancer blogosphere has often been tense and as we step gently into November I feel a release of that tension. There has been much discussion about pink and whether pink and the pink ribbon are appropriate, exploitative and ineffective. A great deal of focus has been on moving conversations forward towards action and education and away from awareness. Awareness is yesterday. Awareness is unneeded. Awareness misses the point. Many bloggers who are usually very active and vocal took a recess during October. Others used the opportunity to shout. There has been a great deal of articulate, passionate and thought-provoking debate.
I struggle with these discussions. Not because I disagree with the concern that pink campaigns focus on profit and an unbalanced view of breast cancer. I find it completely inappropriate that certain products claim to support breast cancer initiatives and often a tiny proportion of the proceeds or profits is used for breast cancer work. Nor do I struggle because I find some campaigns distasteful – after all a certain shocking image even prompted me to leap off my comfortable fence and rant!
No, my issues with the feisty debate stems from the fact that I have a particular perspective on breast cancer, awareness and equity from my place on the planet. I see and hear, and try to understand, the significant different levels of awareness and the very different concerns which people have in my part of the world. I struggle with the fact that I had access to excellent care and treatment and a reasonable level of understanding of breast cancer yet a woman I might sit next to in the course of my life and work here has a very different level of awareness, considerable traditional taboos and for whom access to care and treatment is not easy. The discussions in the wider blogosphere are relevant and critical. But they often do not have relevance from where I am standing.
This is something which I have been struggling with since I stepped over the line in the sand into breast cancer world. Inequity in any form ruffles my feathers and my personal and professional life are driven by this passionate need to play even a tiny role to cause any tiny shift in this balance. But apart from the blog, it is difficult to see what I can really do in my neck of the woods. So recently, I learned of an initiative underway to bring women and men together, raise awareness and understanding about breast cancer and of course I leapt at the opportunity. There are a very small number of expat/international women I know here who have been through diagnosis and treatment and who are currently here so we came together to look at two things. Firstly, how we could support and contribute to the efforts of the local group, and secondly how we could connect as a small group ourselves.
We contacted the key folks involved in the initiative here and asked if we could support. We know that our understanding and experience is different, but we also know that we have all heard the same or similar words. We have all felt that fear when confronted with our mortality and the dread of aggressive, difficult treatments. As individuals, of course our experience is different but this is compounded considerably by our backgrounds.
So, it is complicated. What follows is my understanding and reflection, and I know it is more shallow and superficial than I would like. But it is a start in this broader attempt to convey just how different our cancer experiences are, yet how much we have in common. No matter where we are on the planet. And how critical it is to respect these, no matter how much or little we understand.
Our cultural reference points bring differing levels of understanding wherever we are. I quickly learned that it was even more complex and subtle here than I had imagined. Many people were hesitant or uncomfortable to talk openly about their cancer, or even to be identified as having been diagnosed. Gentle conversations gradually helped us, outsiders, to understand that there is a significant stigma associated with cancer. Belief grounded in karma means that a cancer diagnosis seems to bring with it a judgement that this is a punishment for a wrongdoing either earlier in this life or a previous one. There also are important issues over privacy and sharing private information, similar to the situation which Kirsty discussed in her post from Timor-Leste where the woman she spoke of was unable to raise her concerns with a doctor due to shyness.
So it has been a path which we have been treading along gingerly, trying to understand unspoken concerns and beliefs in solidarity.
Our initial aim has been to support the group in organising and promoting a Pink Ribbon Awareness Day which was being planned. And that is the event which was held last Saturday and which I promised to share details and reflections.
In preparation for the day a few women worked together to prepare a leaflet in Myanmar language, sound in information yet sensitive and appropriate to the context. We took care of the practical and logistical arrangements such as venue, refreshments, shade, seating and translation. We prepared for our own roles on the day and did our best to spread the word.
Although rainy season should be nearing its end our planning had an added edge with the promise of thunderstorms and the day did indeed start under a very moody sky.
The message which the group were anxious to convey was to dispel the utter fear of breast cancer which causes many not to seek medical advice. The message that a diagnosis of cancer is not necessarily a life sentence and that early detection is critical. I found myself struggling to a certain extent, knowing the importance of not reinforcing the belief that early detection guarantees that the cancer will be “cured”. But the discussions soon showed how complicated this is in the global context and the importance of that very early detection message here. For various reasons, potential breast cancer symptoms are often presented at an advanced stage when prognosis is much poorer. Generally, if detection were earlier here, then many lives would be saved. Many, many women and men do not know many of the symptoms of breast cancer. Many are afraid to know – treatment is not easily accessible or affordable. Many prefer to see if symptoms disappear on their own, and take traditional medication. By the time it is clear that the symptom is not going away, the disease could be much more advanced. Many are afraid of the treatment itself, or do not trust it and unsure of where to get reliable information. So it is complicated indeed.
The group decided to have a “programme” which would provide information, encouragement and the opportunity to ask questions as well as learning how to do a self examination in a private space after the main discussions. We provided a “goodie bag” with information leaflets and fans and ribbons were provided for each participant.
After a short introduction, a panel was introduced of four women who shared their experiences and answered questions put by a facilitator. The four women comprised two Myanmar women, one Australian and one Scot. It is probably not hard to guess who the Scot might have been!
We each described our own experience, focusing on how we felt when we discovered the sign that we might have cancer, what we did, what was our treatment and how did we cope. We were also asked to say how much we knew about cancer before our diagnosis. I was asked if I had had treatment options, and who decided what my treatment would be. We were also asked who broke the news to us that we had cancer – was it family or the doctor? It seemed that the Myanmar participants shared their concerns with friends or family some time before seeking medical help on their advice. One spoke of the difficulty in finding an oncologist and when she did, was not comfortable to share her concerns with a male doctor and it took further time to seek a female oncologist.
After we had spoken and answered individual questions, a gentleman sitting in the front row was invited to speak. We very quickly learned that he had been diagnosed with breast cancer and he shared his account with enormous openness and detail. He described finding blood on his shirt one day and when he sought medical advice, was highly surprised to find that this was breast cancer. From my place in the panel, I could not see him clearly, but there was no mistaking what was happening when he started to unbutton his shirt so that people could see his scar.
Following our own stories, there was the opportunity to ask questions. Pieces of paper had been distributed so that people could write their questions down and not feel embarrassed or shy in front of the large group. The panel was joined by one of the international doctors who gave up his Saturday afternoon to provide accurate and up to date information and answer questions from a medical perspective.
The questions themselves show how important the cultural context, the levels of understanding is and how different to many places. I share a few of the questions from memory:
• Are you more likely to have breast cancer if your breasts are very large or very small?
• What were your eating and sleeping habits before you had cancer?
• What is meant by stages and grades of cancer?
• Is it more likely to have cancer in the left than the right breast?
• What counselling support did you have to help you after diagnosis?
• How long does chemotherapy last and how much does it cost?
• What different treatments are there and how much do they cost?
• Are there options other than surgery for a tumour?
Thus, as the discussion ensued I realised that the messages of early detection and awareness of signs and symptoms are critical in this context as many women will seek support and information from friends and family long before consulting a doctor. Thus many present very late and prognosis is much poorer. It is so important to understand and respect the differing places we are all coming from.
I know that there is in many places pink and pink ribbon fatigue. I know that there are calls that the pink ribbon has outlived its use. It is evident that pinkness masks the ugly reality that is breast cancer. I understand these but from where I am I do believe that there is an important place for a unifying pink ribbon. It is sad that the ribbon has been abused and exploited in many places. It is critical to recognise and respect the reality that the pink ribbon excludes the most important group of the breast cancer community – those with metastatic cancer. But it is complicated. The organisers of the event on Saturday were more comfortable working on the symbolic pink by making ribbons, and setting up flowers and providing fans with a message of vigilance. They were far less comfortable sharing personal details or being identified as having been diagnosed. And as outsiders to the context, we must respect that.
Cancer cells do not care what our citizenship is, they are programmed to destroy. The major surgery often required to eradicate tumours is physically disfiguring on any body and psychologically destructive on any mind. Chemotherapy does not care if our hair is fair or dark, long or short, curly or straight, thick or fine – it will still fall as a result of many chemo regimes. Cancer is a psychological diagnosis as much as a physical one, no matter where on the planet we are.
And wherever or whoever we are we must respect and recognise how much we have in common and how much differs.
Amid all of the discussion about pinking and whether or not awareness is outdated, I have been working alongside a small group to organise an event in Yangon to promote Breast Cancer Awareness.
The event took place yesterday afternoon, Saturday 26 October under a moody sky and surrounded by tropical vegetation. We shared personal accounts (Myanmar and international), asked and answered questions and created a space to learn how to do a self-examination. We have created a Facebook page with some images of the day.
Tropical Cancer is incredibly complicated and I learned a great deal yesterday and gained a little more insight into the situation here. A slow reveal which confirms that we may have a great deal in common, but there is a world of difference in our cancer experiences depending on who and where we are.
In the meantime. I gather my thoughts , impressions and memories of the day to share in the coming days.
What an amazing world we live in, instantly connected around the globe through our little screens or devices. However, more than this, I am reminded of the amazing world which I am lucky enough to be part of. This weekend many people in Myanmar have been in festive mode with the Thadingyut Festival of Lights which is celebrated on the full moon of October. I have written about Thadingyut before – it is a very spiritual and beautiful festival.
I decided to head out in the early evening on Saturday, the full moon day and first day of Thadingyut, just as the light was fading. I wanted to wander around my neighbourhood with my new toy – a Nikon SLR which I hardly know how to work. This would be a bit of practice, but also a lovely way to start the evening and the opportunity to see the way the different houses and buildings were festooned in lights and candles to mark the festival.
And crowds gathering at the temples.
As I was walking down the road, watching my step carefully as this was where I fell badly earlier this year, I spotted something moving on the pavement. I could not see it clearly, but it looked like a very hair caterpillar and that called for some further investigation.
As I looked more closely and trained my lens on the critter, I realised that there was a highly interesting specimen in front of me. This was no ordinary caterpillar – this was a very shiny being, wearing a luminous green outfit and set in a body which seemed to impersonate pine foliage. It was the weirdest shape and did not look as if it belonged to the world we know.
I must have looked extremely odd, crouching over this beastie, taking photo after photo. People slowed down and I learned the Myanmar word for caterpillar and more importantly, that this little fellow bites! He was also camera shy and continued his trek across the pavement, ignoring the fact that his pic would later be shared on Facebook and generate a fair bit of interest.
It seems that he is some kind of banana tree resident and has quite a vicious sting with poison-tipped spikes. I have consulted Professor Google but not yet been able to conclusively give him an accurate label. I showed his picture to friends and colleagues here and it seems he is a fairly elusive chap too as no one had seen anything quite like him.
Despite his alien appearance he is very much of the world that I live in. What a reminder that we live in a fascinating and surprising world indeed. And this is yet another reminder that my own surroundings have a particularly exotic flavour.
Welcome to my world!
What a fascinating world we live in.
Last Monday morning, I was sitting in the departures area of Yangon airport, checking email and sipping a cup of tea when my eye caught sight of what was to become the subject of a major gecko rant. On the other side of the world, as my day was getting underway, night had fallen where the post had originated. As my day progressed and I travelled to my next door country, my thoughts kept returning to the inappropriate nature of this post and little mini rants formed in my mind. By the time I had checked into my hotel room in the evening, these had gathered speed to such an extent that I had to activate the offload and download function in the form of a rare, sweet rant. Within ten minutes, I was quickly reviewing the words on the page, and pressing “publish”. I immediately felt better for this being “off my chest”. In more ways than one! In a matter of nanoseconds, my rant was online and visible right around the planet. Our side of the globe was in darkness, and the day was beginning across where the original post had come from.
What an amazing world we live in.
What happened next was dizzying. I realised that the rant was attracting interest and attention by the way the stats started to rise. However, it was late and I was soon tucked up in bed and nodding off, preoccupied and focused on the coming day. After my usual night time bathroom visit, I peaked at the stats to see if the rant was still being read and was astounded to see that the hourly views reported hundreds of visits per hour. Hundreds? Mine is just a modest little blog which has a cosy space in the blogosphere. I am delighted to have days when there are over a hundred visits, and more usually have tens of visits. My previous record was 398 in one day and that had been a very happy day! Now I was seeing more than that in an hour! I almost wanted to press some magic “stop” button as this was starting to feel rather scary and out of control. I am not sure what constitutes “viral” but I would class this as at least”ballistic”!
What a surprising world we live in.
It is not very often that I slip off my comfortable spot on the fence in this space. I much prefer to share thoughts, inspirations, experience and reflections which are less contentious. But sometimes, there is just no choice, A rant is all that will do and rant I will. What does not fail to surprise me however, is the attention which my rants receive in comparison with posts and writing which have been far more carefully considered and composed. I usually spend time thinking before writing and reviewing my blog posts, gently refining language to convey just what I wish to say. Whereas the rants take shape very quickly and with not enough review and revision. So for this particular one to reach so many parts of the world was overwhelming and dizzying. How ironic that a rant rattled off the keyboard in ten minutes than attracts far more attention than carefully composed poetic reflective prose.
What an intriguing world we live in.
Most of Tuesday I was offline as I worked my way through the hospital checks, so I was even more surprised that evening to see that the blog had not been at rest at all while I was disconnected. I watched the stats soar through the evening as visits from all around the world were being logged.
I continued to check with one wary eye into Wednesday and the stats continued to rise. My regular viewing numbers had all but disappeared against this sudden and unusual high level of activity.
In that first day alone, there were over 4000 views. This continued and within 3 days the rant had ranted in over 60 countries (the figures below are a 24 hour snapshot). Astonishingly there had been more visits in those 72 hours than the blog had welcomed in the whole of 2010! I have to admit that I was really rather relieved when the views started to slow down. It is a strange sensation knowing that your words are being read by such a variety of people and you realise just how vulnerable and exposed we are online.
|#||Country||Last 24h (21:00 – 21:00)||Current Hour||Complete Interval|
|Min Pages||Max Pages||Avg Pages||Min Cities||Max Cities||Avg Cities|
|4||United Arab Emirates||2||0||1||0.08||0||1||0.08||0||0||2|
|24||Korea, Republic of||4||0||2||0.17||0||1||0.13||0||0||4|
What an astonishingly interconnected world we live in.
If I had been diagnosed ten or more years earlier, there would have been little or no online community. My breast cancer world would have been so much smaller and more contained. Now we have Facebook, Twitter and all manner of communication on devices which we carry around with us. With one click, a thought or rant is sent over the blogosphere, scattering and sharing the words we key in, to land in the most unexpected dusty corners of the planet.
What an incredible world we live in.
What a strange 72 hours or so it has been. I have travelled internationally, felt fraught and anxious, been unusually outraged, been carried along a conveyor belt of tests, scans, blood draws and appointments and finally emerged through other side. I feel as if I have been passed through one of those old washing mangles!
As has been the norm for the past however many checks I have been through now, the process began with a fast from midnight of Monday. On Tuesday morning I presented myself at Counter 2 (of my hospital) with my usual smile and received the usual warm greetings from the staff.Behind my smile there is the usual nervousness as I know I will be guided towards the first step of the day. Appointments, and especially the Big Check feels like a conveyor belt. I turn up at Counter 2 and from there am set in a process which will spit me out later once I have passed the variety of stops on the way.
And indeed, in no time I was on the conveyor belt and heading towards the first stop – the lab and the blood letting. After that brief stop, I was back on the conveyor belt and being ushered towards the imaging department for the next step – mammogram. Within fifteen minutes I was off again and heading to the X-ray rooms, each time passing one of the places I hate most – the CT scan room. Bleurgh.
Within 45 minutes of arriving at the hospital, X-ray was also done and I was being led to the ultrasound room, currently in a temporary space due to the installation of a new MRi machine. Every year, the ultrasound brings a chill to my soul. I am instantly transported to October 2nd 2009 when I was watching the technician find ghostly spaceship shapes and pegging contours of more than one mass. This year was no different in terms of the sensation of dread and fear, but in the temporary room there was no screen above my head for me to see the images on the screen. If I turned my head and craned my neck I could see what was going on, but it was preferable just to lie still and let the process take place.
In contrast to the mammogram and x-ray, the ultrasound took for ever. Occasionally I peered over my shoulder but knowing I understand nothing of the shapes on the screen I quickly gave that up and tried to zone out. But that was not so easy. She was paying particular attention to one part of my upper abdomen around and below my right armpit. More and more cold jelly appeared on my skin and the pinging and pegging started as she worked her way around whatever she was working her way around. I think that some “priing” noises were the sound of saving an image, another “beep” noise signified pegging a shape. Or perhaps it was the other way round. At any rate, I could not work out which was which and just listened to the sounds as my stomach tightened the more this continued. Eventually, she stood up, told me she was finished and walked out of the room. And that really rang alarm bells – usually I get a little informal feedback, confirmation that there are a couple of small cysts and liver wibbles but nothing to worry about. I hate hearing nothing. It freaks me out, even more than the undue attention which had been paid to that one particular area which had started out the freaking out.
It is sobering getting cleaned up and changed after these tests and scans. It all becomes immediately real again. And I cannot describe the torturing fear in that space of time between scans and review/results. I am extremely fortunate that having my checks in Bangkok , that time is far shorter that elsewhere. I was told to go and eat breakfast, but have no idea what that was or whether I even finished it. My head was focused solely on the repeated scanning of one area and the abrupt departure of the doctor.
Waiting in the area near Dr W2′s consulting room passed in a daze. I did not even attempt to read my KIndle and could make no sense of the obvius images on the TV with reports of flooding in other parts of the city. I was in another, dimension, suspended and unable to move in any direction.
Eventually, my appointment with Dr W2 came round and I moved into his office. As I sat down, he was reading the scan reports. There was a great deal of text on one of the pages and I could feel my heart rate increasing as he read over the results with a dead pan face. Finally he looked up. “It’s OK” he said. Your mammogram is normal. Your X-ray is unremarkable. And the Ultrasound is mostly fine.” I could feel my eyes welling as he spoke those words.
I of course asked about the alarming attention of the scan and he told me that there are some “wibbles” (that is my medical term not Dr W2′s – I can’t remember what he called them) on my liver. My liver is not young – in fact it is the same age as I am and showing what is likely to be signs of aging. He will continue to monitor these marks. Previously, CT scans have shown up liver wibbles, but (thankfully) I had not CT scan this time. (I hate them SO much). There are more wibbles but “favoured benign” on the ultrasound.
He told me that my tumour markers were not worrisome – one had risen a little but has been consistently higher wince the embolism so he is not worried. And the other one has gone down from the slightly upper range of normal to low! Which is very welcome. He asked me if I am taking my medication. He asked me about three times, when of course alarmed me. Despite the heavy side effects I am taking my meds meticulously and told him so. We went on to talk about the side effects. He has suggested another med which should help with the joint pain and stiffness. Let’s see how it works. He examined me and noted that my right leg was slightly larger than the left which drew his attention. In fact it drew his attention so much that he did not even notice my funky toenail art! That is not comforting at all! He is also requesting another bone scan on my next round of checks in 6 months which is also a tad disquieting.
Finally I got his verdict. “Fine but complicated.” With the original Stage 3 diagnosis, the pulmonary embolism, side effects and the need to take a number of heavy meds that makes me “complicated”. Which is ok, in that it is far better than being “interesting”. I was “interesting” when undergoing the chemo and he would have to calculate how many drips of toxins to give me to maximise the effect of the chemo without over toxifying me! I was “interesting” when I had spaceship lumps and unusual pathology. No, it is not fun being “interesting to an oncologist”. It is not, however, as good as being “boring”. That is what I really want to be. So boring that my oncologist would have to comment on my funky toenails as there is nothing else of interest to talk about! One day perhaps?
I also saw my lovely surgeon Dr W and he was also reasonably happy with the results. He asked me how long now since diagnosis, and when I told him it was 4 years and 8 days he expressed surprise. “That’s incredible” he said. I am not sure why it is incredible – I prefer to think it is because time passes quickly and not that when I originally presented he did not expect to see me in 4 years time. I did not ask him why in case I did not like the answer.
So, finally I reached the point where I could get off the conveyor belt, once I had picked up another six months of medication and the paperwork and walk out into the sultry Bangkok evening air two days after I had embarked on this round of checks. Able to breathe out, at least for the next six months. Which I know is exactly what I wished for.
I guess that NED (No Evidence of Disease)and I are not exactly walking arm in arm along a sunny path, but we are kind of in the same town. Maybe we can get a bit closer in 6 months time? That sure would be good.