Tuesday, 26 July 2011

It Will Grow Back...

So. The day that I never thought would happen has finally come.

No, I'm not about to go back to the 9 to 5. Nope, baby A has not yet made my day by uttering those long-awaited words; 'I am a child prodigy'. And nope, I haven't awoken from a sleepy, six month coma to find that my current predicament was all an anxiety-induced dream.

No, no, no ! You see, today I have realised for the first time in half a year that I really, really, badly need... a haircut.

After my adventures with wigs, headwraps, turbans, scarves and all things sculptural, I have finally arrived at the day when the hair that grows on my head has outgrown me. No longer do I have a short bone-straight crop that sits sensibly on my scalp and just seems to grow into a shape that one work colleague described as 'chic' when she came round to visit me. It seems that my follicles are at long last, remembering the curl pattern of my previous afro hair and rebelling against the straightness brought about by the hardcore chemo. My curls are coming back, fast and furious and in the meantime, my hair has gone from stylish to scruffy in just a few days. At long last, I'm beginning to understand the plight of my caucasian sisters who seem to often moan about needing a haircut every couple of days, while I'd sit there twisting the ends of  hair that hadn't seen a pair of scissors in years. I have discovered that unlike afro hair, straight (or straightish) hair does not hide a multitude of sins or bad hair days. My current hair, which once hung down has now decided that it wants to hang out and I am currently sporting a look that is somewhere in between a pixie cut and a fro. After all my rants about not being able to find a wig that replicated my own natural curls, it seems ironic to admit that I'll miss my short, straight hairstyle. It was low maintenance, cheap and made me stand out from the crowd. It chose me rather than the other way around, but it seemed to work. I received more compliments about my current hair than I have ever done in my entire life. And while I welcome the arrival of my old afro hair, since it will signal the removal of all those nasty toxins out of my system, I think I'll miss the new identity that often comes with a radical makeover. What I didn't realise before (since I've pretty much always had hair) is that to other women, a daringly short, peroxide looking hairstyle on another woman suggests confidence and creativity. It's not competitive in the way that weaves, or the more elaborate 'i spent £200 to look like this' hairstyles are. And the best thing is... you can generously apply copious amounts of make-up and no-one will ever accuse you of being vain. I have truly enjoyed my sojourn into the land of the crop.  

But now, I need a trim and the dilemma that I now face is... who can I get to cut it ?  At the moment, it doesn't really have the texture of afro hair so a visit to my local Afro-Caribbean barbers' is out and I just don't feel right getting it cut in a European hairdressers since I have never done this before and wouldn't even know what to ask for. So I've compromised. I've heard of an Asian hairstylist who is very good and who cuts both. I've made an appointment to get it cut tomorrow and I'm damn well hoping that I leave her salon looking a lot better than when I entered it. I am aware that this could all go horribly wrong, but at least there's one thing that I know for sure... however badly things might turn out, this time it will grow back.

Monday, 25 July 2011

The A - Z of Body Parts...

After the emotional turmoil of my last post, I feel compelled to write about something a little more upbeat. But try as I might, I just can't...

Only kidding, guys !

These days, my life is all about doctors. With all the constant trips that I've been making to hospital to get my wound checked and dressed, I've realised that I see more of doctors and nurses at the moment, than I do my own family and friends. Since we exist in such a workaholic culture, we can often feel this way about our work colleagues, but when I'm finding that my book of choice of an evening is a complete encyclopaedia of the human body rather than some throwaway chick-lit, I know that something in my way of thinking is beginning to change.

So, given my constant involvement with all things medical, it's probably not surprising to hear that I'm currently obsessed with bodily functions. So much so, that every couple of days I think about retraining to be an oncologist, nurse, or failing that, a nutritionist. This is probably due to the fact that I'm picking up so many scientific facts and details as I interrogate my caregivers, that I fool myself into thinking what a breeze it would be to study anatomy in more detail. Unfortunately, a quick look at the years and years of training, not to mention cost and academic requirements that you need before you can even qualify as a doctor, soon puts me in my place. This, and two other very important events that happened recently.

The other day, I went to see my doctor's stand-in to have my wound checked and to find out if I needed to still wear a stoma bag. He is a kind, cordial man who looks unbelievably young to be a consultant surgeon and who sometimes betrays his vast knowledge and experience by revealing just a touch of indecision every now and again.

He welcomed me into his office, but had that busy, distracted look that people often have when they've just got too much to do.  He continued to tell me about the twelve hours worth of work that day that he was trying to force into eight hours. Pictures of his two children hung on one wall of his otherwise sparse-looking office and two framed university certificates sat proudly on the adjacent wall. He examined my wound and suggested that I take off the stoma bag since the wound seemed to have healed. I told him that I could still feel fluid under my implant but he reassured me that that this should flatten in time and attach itself to my chest wall and then be reabsorbed by my body. If the fluid leaked again, all I needed to do is re-attach the bag and contact the hospital. I felt so confident and articulate when I questioned him that I began to congratulate myself on the fact that I could keep up with all his medical jargon.

At some point in the conversation though, I'm distracted by a poster that hangs just behind me. It is about lung cancer and seems to have lots of information about lymph nodes. The letters are in different sizes and colours and this may well have been what draws me to the poster in the first place. There are lots of medical terms that I have no idea about but the poster dominates the wall and I find myself a little mesmerised by it. He sees me looking at it and in an instant his demeanour changes.

'Ahhh, Lymph nodes in the lungs !'

He proceeds to tell me how there are two different types of terminology to describe different types of lymph nodes depending on where you are in the world. I learn that in Asia, they have different words for different types of lymph nodes than we do in Europe. This poster is an attempt to create one unified world of lymph nodes, since it is confusing to talk to a surgeon in Korea about a procedure that you've just carried out when you're using different terminology. I see his expression change. He looks more animated than he has been since I walked into the room. I wish i could tell you how excited I was too to discover this piece of information, but when I looked at the indecipherable collection of convoluted scientific words, I felt as though I truly was attempting to read Korean. My only thought that sprung to mind was, 'how the hell does he remember all those words' ?

It was then that I realised just how difficult it must be to for someone like him, a young, brilliant, successful surgeon - part physician, part scientist to endure the dumbed-down vocabulary that us normal mortals use on a daily basis. Here was I feeling smug at being able to grasp definitions like seroma and stoma and when to him, my questions were probably equivalent to a child learning the basics of language. I began to remember why it was that I never really enjoyed studying science at school - too many abstract concepts and far too many mathematical equations. My vision of becoming some kind (any kind) of future health professional began to vanish before my eyes.

This leads me on nicely to my second revelation. Since I was obviously off in the land of nod during the four hour operation that I endured recently, my curiosity recently got the better of me and I decided to find out just how the procedure was carried out - on Youtube.

Nothing exactly matched the operation that I have just had, but there was a close contender. The removal of the sternum to gain access to the heart is a common procedure in the world of cardiac surgery.

The next day, I find such a procedure on youtube and click on it.. What I witness reminds me never, ever to consult youtube for videos that involve surgery. I see a body covered with plastic and the hands of two surgeons. One has a scalpel. In the video, he makes a long incision from the top of the chest to the stomach. Okay, I hear you say. Nothing wrong with that is there ? But what comes next makes me feel as if I'm watching some kind of slash movie. Next, he brings out an electric saw and starts sawing along the sternum. This seems to take ages. Blood spurts up from the comatose body. Once they've finished sawing, they pull the sternum apart, and begin to prod and pull at the red, pulsating organ which I'm guessing is the heart, while at the same time sucking up blood and fluids that seem to be flowing uncontrollaby out of the body. There doesn't seem to be much hi -tech equipment around - nothing to guide them by camera or scans. It just seems like a lot of blood, bones and organ to me - not that much different to watching a butcher dissecting a cow. I find it hard to imagine myself on the operating theatre with just my chest and part of each breast visible, while my surgeon attacks my sternum with a saw. Even though I didn't have open heart surgery, I think we can all agree that bone is made from pretty strong stuff. The image is so disturbing that days later, I make the most of being in the company of another thoracic surgeon to mention what I saw. 'Oh yes, he says casually, I didn't know that youtube was now showing thoracic surgery ?  What did you see ?'  I mention the saw and tell him that the whole procedure looked pretty brutal. I ask him how the hell he knows where to start and where to stop. He confirms that what I saw was open heart surgery, but tells me that yes, a saw is often used in thoracic surgery and then continues to question me about the direction of the sawing, 'Was it upwards or downwards ? downwards ? yep, it's pretty brutal stuff.' He tells me that there is often a CT scan in the room that they refer to, or sometimes they simply use the ribs or another part of the body as a reference point. But he tells me that the real skill of a surgeon is knowing exactly where and when to cut.

You see, I'm not really sure what I was expecting when I typed in those words. Perhaps I would have felt more reassured had I seen a body marked up with diagrams, or a surgeon's hands gently cutting along a felt tipped line. The funny thing is, when I speak to doctors about chemo and surgery and radiation, they often make a point of leaving out all the really gruesome points, like I guess, just how toxic those poisons are that they inject into you, or how traumatic it is for the body to experience surgery. We then process it in our minds that things will be not so bad because we know that the body will recover eventually. Somewhere along the way we skip the actual reality of the experience and focus on our feelings, which like the terminology on the lung cancer poster, are often so abstract that they take us away from the reality of the present. And it works quite well. When I first thought about the operation I was having I thought about how I'd feel before and after, perhaps because I didn't want to dare consider the reality of what my body would have to go through. I realise that these guys have to deal with this kind of reality every day. I also realise that I know nothing about the human body. And I'm sure that I'm not alone. For a piece of living and breathing machinery that is often more precious to us than life itself, it seems strange that we often know more about the inner workings of our cars than we do our own flesh and blood. I realise that I don't think I've got what it takes to be a nurse or doctor. I'm way too squeamish, too easily distracted and am bad with names.  Perhaps I'll just stick to blogging about chemo in future...

Saturday, 16 July 2011

Tomorrow Never Dies...

I guess everyone has one of those days.

The sort of the day when you wake up, you look out of the window and regardless of how bright the sky might be, you feel grey inside. You spend the rest of the day trying to shake this feeling of heaviness. You try a spot of retail therapy, you treat yourself to your favourite dessert, you call a friend and gossip about the ins and outs of her private life. You even resort to buying a glossy magazine. But nothing works. You glance at the faces of your fellow commuters and city dwellers and regardless of how young, old, black or white the person is standing next to you, suddenly everyone feels like an alien.

I had one of those days recently.  Now as you know, it really isn't my style to wallow in self-pity and drone on and on about what a terrible card life has dealt me. Nature has made me far too much of a pragmatist for that and besides, if I thought that for just one second it might change the course of events, believe me, I would be one of the first out there to practise a bit of self-flagellation. Because sadly, for every Why Me ? question that I could ask myself, there are countless other (and worse) examples of Why He or She ? to contend with.

But a few days ago I felt differently. I awoke again in the early hours of the morning to find fluid leaking from my wound once more. This time as I knew why it was happening, I felt less panicked than before. But it still took both of us to get up, place some dressings on the wound and mop up with fluid before retiring back to bed to await the morning. I had already planned a trip to the hospital as I had a feeling I would start to leak again by midweek. But I couldn't sleep. I spent the next few hours trying desperately to keep still so that the fluid wouldn't burst out of the wound and gush onto the mattress. In the morning we dropped baby A off to nursery, then we drove to the hospital where we were told that I couldn't see a doctor until 12.30pm. I lay on a table while one of the nurses changed my dressings and mopped up the fluid (officially called seroma) until it stopped. She then told me that the best thing to do was to add a stoma bag (the kind that you normally use for colostomies) onto the wound to catch the fluid. In two days time I should return to have it changed if the fluid was still leaking. A few hours later I saw a doctor, who told me that I might possibly have an infection. The antibiotics given to me previously by my surgeon had had no effect and if things get really bad and the infection doesn't shift, they might have to open me up again.

I know. Some of this sounds like no big deal and some of it sounds terrible. Normally I would always lean towards the former, telling myself that things are never as bad as they might first appear. Enforced naivety is often my bosom (excuse the pun) buddy. But today for some reason, I couldn't do this. I found myself for the first time since my diagnosis feeling that powerful yet destructive emotion; Anger.  I felt anger when I sat in the nurse's chair and watched her attach the stoma bag to my open wound, anger when I heard my surgeon's colleague and holiday stand-in talk about 'opening me up' again, anger when I stood at the train station dressed in long jeans to cover my anti-embolism socks and trainers to hide my broken toenails, and watched bright young things float by in flip-flops and summer dresses. I felt anger when I saw couples idly canoodling with each other, anger when I glimpsed mothers happily attending to their children and anger at the realisation that whatever you might be going through at that particular moment in time, however traumatic it might seem, life still goes on. It goes on whether you feel attached to or disconnected from it. The world just doesn't wait for you.

Jeez, that's a whole lot of anger for one person to deal with.

So this is how it feels, I remember thinking to myself, to feel pure envy. Without even knowing their life stories, I realised that I envied those people because they didn't have to think about their bodies. Their bodies were just there, doing what they were told and helping them to enjoy the present moment.
While I considered this, a feeling of sadness overwhelmed me. The feeling got so bad that before I knew it, tears had started to flow down my cheeks. I tried to stop them from falling but it was no good. Thank god for dark shades and thank god for poseurs who wear dark shades inside train stations. No-one batted an eyelid when I put on my sunglasses in the dimly lit interior and pretended to look at the departure boards. I still felt tearful as I boarded the train and when I sat in the carriage and watched people chatter away on their mobiles and immerse themselves in novels, I tried to remind myself of all the great things that I had in my life; my supportive friends; my loyal partner; my devoted family; my inspirational and beautiful son. I thought about the fact that the surgery had been successful. When they scrutinised my half a sternum under a microscope they found dead cancer cells, not the misbehaving live ones that had given me so much grief six months ago. I'd had a complete response to the chemo, the tumours were out of my liver and I am officially classed as 'NED' - no evidence of disease, And I know that this is a great result; the best I could have ever hoped for. But it's hard to quiet the mind sometimes - to ignore the voice that keep asking yes, but what about tomorrow, and the day after and the day after that ? What if ? How do you learn to live again with uncertainty ?

Sometimes as we all know, for the unfortunate few, tomorrow never comes. Now there's a reality that none of us wants to consider. And while I'm certainly not wishing this upon myself or anyone else out there, remembering this reminds me how fruitless it is to worry about what might happen in the future. But just try telling my inquisitive mind that.

Saturday, 9 July 2011

A Few Lessons Learned...

If I hadn't had major surgery, I would never have discovered...

how damn uncomfortable it is to lie on one's back without changing position for the whole night...

that there are lots and lots and lots of different painkillers apart from aspirin, paracetomol and ibuprofen...

that jabbing yourself in the stomach every night with a syringe can make one feel like a junkie...

that 'suture' is the posh word for stitch - used often and with a 'je ne sais quoi' flair by surgeons and nurses alike...

that coughing can be woefully painful after you've just had part of your sternum removed...

that sneezing is... (no, don't even go there...)

that support (or anti-embolism) tights look extremely '80s when teamed with city shorts...

that drains do not always 'drain' away all the excess fluid or 'seroma'...

that a hospital room, regardless of how plush it is, after a week's accommodation, can feel like a prison cell...

that after a few hours under anaesthesia, upon waking you will have an intense thirst and feel like you're in the middle of the sahara desert...

that the human body is the most wonderfully adaptive, strong and resilient kick-ass piece of machinery known to mankind...

So there.

Wednesday, 6 July 2011

It's not unusual...

...to have no internet access once in a while.

Due to an unforseen glitch in my home internet software, I have been offline and out of cyberspace for longer than I would have liked. I can see that it's only been around two weeks since I last posted here, but it has surely felt like much longer. Where to start ?  Do I tell you about my current period of convalescence at home - only made more bearable by an ongoing supply of the finest 70% dark chocolate bars that I can find ? Or how I've discovered just how much it can hurt to cough when you've been slashed open and sewn up again across the chest ?  No ? Too much like Frankinstein ?
What if I tell you how to wrestle with a toddler without actually picking him up or holding him ?

Okay. I know.

Two days ago I experienced a drama to beat all dramas for a while (neither Casualty nor Holby City have a patch on my life at the moment !).

In my new post-op, half a sternum-less world, I annoyingly often feel the need to cough. Quite where this new affliction has come from, I don't know. I certainly didn't have the urge before and now that it has developed into an activity that fills me with fear and dread, (because it hurts - a lot), every now and again I seem to have developed an intense, urgent desire to relieve my lungs of a few trespassing particles

So a few days ago, in the very early hours of the morning, I find myself in the bathroom surrounded by the stillness of the night, trying hard to cough up something, anything, just as long as I can get back to my sleep. On returning, my t-shirt feels wet. It's not a particularly hot night but I figure that I must have sweated my way through the first part of the night and decide to change into a fresh t-shirt. While doing so, I realise that the wetness is not coming from my t-shirt but my shorts. They are soaked through but I'm still not sure what is happening. For a minute I contemplate the terrible horror that I might have wet myself without knowing it. But the wetness seems to be only at the front of my shorts, not the back. And then I realise that the wound along my breastbone is oozing fluid. Only it isn't just a gentle trickle, a thick, syrupy fluid is gushing out of one place. I wipe it away but it only oozes out more. I rush to the bathroom in a panic and grab some surgical gloves and a dressing. I'm not sure if this is the right thing to do and the liquid is now flowing so fast that there are puddles forming on the bathroom floor. I rush back into the bedroom with the dressing and wake up my partner. He is still half-asleep, half-berating me for having woken him up, half wondering what has happened. By now I'm panicking. I imagine what might happen if the whole wound opens. Will I see some of my insides ? The thought feels me with terror and by now I'm hyperventilating. In between shallow breaths I tell my partner what has just happened. My mother is sleeping at the back of the flat. I don't want to worry her. I put a dressing on myself and we call the hospital. They tell us to go to an A & E department. Fortunately as luck would have it, I live next door to one. When we first bought our flat, some people thought us crazy to live so near to a hospital. 'Just imagine the noise,' they said. 'The traffic, the walking wounded.' But so far, for emergencies which have ranged from pregnancy complications to newborn accidents, our current location has proven itself to be a fortuitous choice. Before we leave, we wake up my mother and tell her that I'm leaking. We tell her that it's nothing serious, but it needs checking out.

So we're in A & E and boy, is it depressing. We sit next next to a handful of bored looking people. A few are clutching parts of their bodies. The receptionist looks even more bored. When I tell her what has happened to me, I see her eyes glaze over. We ask her how long we'll have to wait. Between two and a half and three hours is her answer. I'm flabbergasted. The waiting room looks empty. It's the early hours on Sunday morning for God's sake. Why so long ?  Her eyes glaze over again. I tell her that there are fluids gushing out of my body. I get to see a nurse. He registers me and we get to wait in another area. After an hour, we see a doctor. I show her the dressing which has now soaked through. She tries mopping it up and starts asking me questions about the operation.

Was there a camera involved ?

How should I know ? I think. I was out for the count at the time. I mean, who the hell goes in to have their sternum removed and is awake during the whole thing ?

My patience is beginning to wear thin but I take the passive approach and answer each question rationally. The doctor looks quite young. I wonder how experienced she is. She says she thinks that the fluid could be coming from my lungs, but she doesn't understand how I look so well. I haven't fainted nor am I breathless. I can walk and talk with ease. My partner reminds me of the build-up of fluid that had occurred under my breast implant and when she returns, I tell her about this. She presses on the implant. More fluid oozes out. She presses out more, mopping up the liquid that is now curling itself around my body. There is a student doctor in the room who looks blankly at my torso while the procedure is taking place. I can't help wondering what she's thinking of it all. After a while, the oozing stops. She puts on another dressing, tells me that the fluid was seroma (a build-up of liquid that often happens after surgery) which basically needed to find a way out of my body. A small opening in the wound was enough for it to make a breakaway. Apparently it's better that it did this, than stay in my body to possibly poison my blood. I'm given antibiotics and told that samples will be sent to the lab. We get home at 5 in the morning. It's daybreak when we leave and I think to myself what a lovely time of the day this is, light enough for it to be called morning, yet too early for the rest of London to have woken up yet. Back at home my mother is waiting up for us. I have a cup of tea and a piece of toast and I tell her what's happened. She's concerned but seems happy that it wasn't too serious. Baby A sleeps peacefully through the whole event. I see my doctor the next day who checks for signs of infection, cleans the wound and puts on new dressings. He tells me that the fluid is normally reabsorbed into the body in the majority of cases. It isn't usual for an incident like this to happen. I'm getting used to being told how unusual I am. I am often called this by my oncologist when discussing my cancer.

I end up feeling a bit sorry for my surgeon. Although I'm the one who had to hobble into hospital in the early hours of the morn, it is he who seems more affected by the trauma than me. I put it down to the fact that he's a perfectionist. To have one of his patients end up in A& E after one of his operations must have been an even bigger blow to him than myself. He wants me to come in two days later just to check that the wound is healing okay, and I agree.

So now, i'm back at home. I'm wondering how long it takes to get back to normal life - if there's ever such a thing called that any more. Today, while baby A is at nursery, I go for a walk round the park and sit on the grass for a while, reminding myself how much I used to love this time to myself when I was a single girl in London. In my post-surgery, post-chemo state, I still feel decades older than my real age. And today, when I open the door to my postman, he looks at my now very white hair and tells me that it is almost as grey as his. In my past, pre-cancerland life, I probably would've taken offence at this. But today, my current bone straight, stubbornly salt and pepper hirsuteness is beginning to feel like a badge of honour.