Wednesday, 28 October 2015

The Cancer Myth...

To be brutally honest, the process of re-mortgaging my flat every two years is never going to top my list of activities that fill me with joy and mirth. The only emotion that I have ever felt on seeing the six-figure sum that seems to have hardly diminished since the last ‘fixed’ period is the feeling of resignation that I will always have to work to live, and not the other way around. Still, there is something very pleasing about having the kind of financial adviser who, despite having to come to work dressed formally in a pin-striped suit, is more like a male bestie, the type who doesn’t mind a bit of idle chat thrown into the kind of conversation that often starts with world politics and ends up with the Kardashians. So although I may not enjoy poring over all the figures and being reminded why it was that I once needed the help of a tutor to pass my Maths O’Level, I will willingly spend more time than I need to in his company, simply for the quality of the conversation.

Since we’re on such good terms, it didn’t surprise me that after enquiring about my current health, my financial bestie then asked me a very leading question. ‘So, is it true that once you’ve been diagnosed with cancer, you don’t really sweat the small stuff any more ? Like those days when you’re stuck in traffic and suddenly someone cuts in front of you. Do things still get to you ?’

In retrospect I should have taken more time to figure out how to answer this. I liked his honesty, his genuineness and the fact that he really wanted to discover whether the myth was true. My gut reaction was to say with some bravado, ‘hell yeah, things still wind me up, sometimes I curse more simply because I can. In fact there are days when I’m just waiting for someone to put a foot wrong, just so that I can project on to them. Call it a cheap and effective version of therapy'. But of course I don’t say this because it isn’t altogether true.

Sometimes when I’ve spent most of the day inside my head having dashed from school to hospital to work to home, I’m so exhausted from having worn so many hats in such a short space of time that someone really could knock me over and walk across me and I’d probably get up, dust myself off and continue on my merry way. Because, like most things in life, my feelings are in a constant state of flux. Sometimes I feel angry and shouty and other times completely serene. The myth about cancer is that the payoff to having to spend the best part of a year with a cocktail of poisons infused throughout your body or being zapped by gamma rays, is that somehow you will come out of the experience a better, stronger and wiser person, that your patience will be boundless, that your ability to encounter the complexities of life will become god-like. Well, it isn’t like that really.

I don’t remember where I began, but I told him that yes, I still get angry over silly things, in the same way that I probably did before a cancer cell ever developed in my body. But the thing that I try to do differently is to be aware of the fact that I'm still able to do this. When I’m frustrated with my journey to work, I remind myself of the time when I was too weak to do the seven minute walk to my local station. When I’m on a bus and someone is rude to me, instead of immediately throwing an insult back, I try fixing my gaze at the window. I understand that sometimes silence is the best answer. And I continue my journey in peace without having had to absorb their negativity. This may sound as if my reluctant dalliance with the big C has now transformed me into Mother Teresa. It hasn't. The mind likes to stubbornly cling on to the ugly, so I'm always in a fight with my ego. But I find, I say, that even when I do lose it, those red mist moments often get shorter. I find myself playing the ‘will this really matter in five years time ?’ game. And invariably, the answer is always no. He listens intently and with admiration, as if I’ve just revealed the secret to happiness in the Modern world. I try my best to make my words sound more pragmatic than they really are, but it's too late and without intentionally doing so, I fear that I have just reinforced yet another cancer myth about life after diagnosis.

Monday, 19 October 2015

Thinking Beyond Pink...

Halfway through the month that some would describe as 'pinktober', when companies decide to donate a portion of their profits to a number of leading breast cancer charities, I realised that National Metastatic Breast Cancer Awareness Day, which falls on October 13, had clean passed me by. This might have much to do with the fact that my days of reading glossy women's mags are long gone, but for someone who is an avid listener of news, it seems strange that a day that has been created to raise awareness of a type of cancer that actually kills women on a daily basis seems to be firmly at the back of the queue when it comes to coverage.

Metastatic or secondary breast cancer for those of you who think that all breast cancer is the same, is when the little blighters escape the confines of your breast and decided to set up camp elsewhere around your body. Their favoured hang-outs are bone, liver, lung and brain but in the odd case, any old organ will do. Many charities focus on early detection and prevention. Perhaps the thinking behind this being that being watchful and vigilant gives the individual some kind of control when it comes to preventing a diagnosis. Naturally, this often leaves ladies with mets feeling a tad unloved and isolated. So when I was contacted recently by a company and asked whether I would be willing to mention on this blog that a leading chocolatier was offering a 10% donation to a breast cancer charity with every special box of chocolate sold, my first question was to ask, 'Who is the charity' ?

After doing a bit of research, I was pleasantly surprised to find that Breast Cancer Now, an amalgamation of Breast Cancer Campaign and Breakthrough Breast Cancer, not only includes secondary cancer as an area of focus, they have been busy lambasting the government over its plans to throw the recently hailed wonder drug Kadcyla out of its Cancer Drugs Fund. They've also been petitioning pharmaceutical company, Roche to lower its prices. In real terms, the move by the government translates to thousands of women suddenly being unable to access this super-crazily expensive drug which is doing its best to keep them alive, simply because the powers-that-be have deemed it too expensive. Also on the site, was this very touching story about a woman who had been previously treated with Kadcyla and who was now in remission (don't forget to sign the petition at the end !)

But before I forget the most important bit, the chocolatier is Godiva, the Gucci of all things choc and fondant whose range extends into the realm of dark and post 70% cocoa mass, and with everyone from nutritionists to neuroscientists currently promoting the benefits of dark chocolate (and in some cases chocolate in general), now there really is no need to feel guilty about having an occasional binge.

Wednesday, 14 October 2015

Return to Sender...

It has been almost a month since I sat in the oncology clinic at my local hospital, eagerly awaiting the results of my latest scan. For obvious reasons, I find these appointments stressful. It isn't just the fear of knowing that a few lines of print, hurriedly faxed over by a radiologist might be enough to change the course of my life forever, it's also the waiting, the observation of other patients, some younger, mostly older, often with other family members coming to terms with their new or existing life. Since I take tablets every day, and have three monthly zoladex injections at my GP office, for most of the time I can avoid being drawn back into the world of cancer with all its cruel accessories. I don't have to look at the headscarves, or the obvious wigs, or the wheelchairs, or sticks or frail bodies that I encounter every time I walk into Guy's hospital. I'm part of the world that is (as one psychologist termed it) blindly optimistic every day. I cross the road without giving a thought that at any moment a car might not stop at the pedestrian crossing and hurtle into me. I walk into bars and pubs not worrying whether a fire might break out and I'll be trapped inside. If I thought about every possible eventuality that could hasten my demise, I probably would think twice before getting up in the morning. And yet, these occurrences happen every day to other people in other parts of the world. Just not to us, because of course, we're unique. This is I guess, what the psychologist meant by blind optimism - the idea that traumatic, life-threatening events only ever happen to other people. Not us.

Every three months while I sit in the fawn coloured faux-leather chairs and wait patiently for my name to be called, my eyes study the other patients entering the room and my mind wanders as I try to imagine their lives and their prognoses. Usually, I welcome the distraction. I'm usually too agitated and too anxious to calm myself down and whatever thoughts I can put into my head to stop the sweatiness of my palms and the palpitations in my chest, are given my full attention. But this month was different. After having to delay my appointment by a week (at the hospital's request), I plucked up the courage to email my doctor to find out the results of my scan. Was I scared shitless at the prospect of being told by email that I might well need another course of the dreaded chemo ? You bet. I deliberated for days. To contact her or not to contact her ? Would it be better to live for a few more days in blissful ignorance, and then hear the results in the usual, stressful fashion ? But if I decided to check the results before the clinic appointment, I'd give them time to think of a plan B well ahead time.

And so I did. And I waited, and waited and heard nothing. No response from my email, not even a telephone call. I decided to convince myself that this lack of a response meant that it could only be bad news and before the day was out, I imagined myself back to where I was five years ago, wearing an icy cold cap while attached to an IV, clutching a hot drink to keep warm. After a long week of waiting followed by the prospect of sitting once again, sweaty-palmed in the waiting room looking for a reason to halt the thoughts swimming in my head, I received the reply I'd been waiting for. Just a few lines, but enough to tell me all I needed to know.'You'll be pleased to hear that the results of your recent scan show no change'. I could've leaned into the computer and kissed those words off the screen. My weekend celebrations lasted well beyond the weekend and when I saw my oncologist the following Monday she gave me a big hug as if she was greeting an old friend. When I tell her that I was secretly worried by the silence after emailing her, she laughs it off and tells me how bad she is with email. If only you knew, I feel like telling her. If only you knew how much difference that email made to the next 48 hours of my entire existence, you would have sent it straight away.

Tuesday, 5 May 2015

About A Blog...

I'm not sure what did it.

Was it the logging on and doing my weekly surf to find out what was happening in the online world of metastatic breast cancer, only to discover that long-term blogger and high profile advocate for change, Lisa Bonchek Adams was no more ? Or perhaps it was the recent revelation of a fellow BC friend who I only ever exchange stories with on Facebook, has now had recurrences after a long time of being in remission ? Whatever it was, something made me decide to promptly sit down with a strong cup of coffee, just an hour or so after dropping off my son at school, and turn towards this blog. I've written many times before about the sinking feeling that often accompanies the news that someone who you wouldn't recognise if you passed them on a deserted street has just died from the very same disease that you can now call your own. Apart from the feeling of sadness for their family, children and friends there lurks too the sombre voice of one of my doctors during a past consultation when a scan showed positive (read negative if you're the one sitting in a doctor's chair waiting for the results) that always comes back to haunt me - 'one day you're going to run out of drugs'. This rather insensitive but succinct sentence (no, I can't believe she actually said that either... but apparently she did feel guilty after saying it) always reminds me that perhaps the waves of grief and numbness that I feel might one day be directed to my own situation. A death from metastatic breast cancer shouldn't be a shock. For those of us who are lucky enough at the moment to be living a 'normal' life, it can be an abrupt reminder of how quickly things can change. It is also, if I really want to be melancholic, a stern reality check that warns me never to get too complacent about the here and now, just yet.

Just as I was thinking of returning to post another musing on life five years later, I happened to watch The C- Word last night on BBC Iplayer. This was a one-off drama based on the book of the same name by the late Lisa Lynch. I never read the book but was a regular visitor to her blog and enjoyed her bittersweet and witty take on living with cancer. She was around ten years younger than me and while I admired her sunny and often hilarious view of everything from her portrayal of her doctors to the gruesome after-effects of chemo, I admit to being too immersed in resentment and fear at the time to relate fully to what she so articulately wrote. Sometimes I would read both Lisa and Lisa's blogs and wonder how they could be so open about everything. In my traditional West Indian family we had secrets about secrets. It's surprising that we grew up remembering our own names. I watched the programme last night already knowing the story but interested to see how secondary breast cancer was going to be portrayed on mainstream TV. And it was surprisingly good and it made me overwhelmingly sad. For not only did I recognise the tidal wave of complex emotions that you are forced to deal with in a relatively short space of time, it reminded me how important it was and still is for us mets ladies (the ones that people are never quite sure what to say to) to continue blogging and sharing our views about what it is to live with this horrible disease, and how much it helps to others to hear.

I didn't plan to preach my way back to this blog, but perhaps after reading some of the tweets following the death of Lisa Bonchek Adams and re-reading some of Lisa Lynch's blog, let's just say I'm feeling more than a little humbled.

On the treatment front, I'm still on the zometa bone juice which I get every month by IV infusion and then there are the daily letrozole tablets as well as the three monthly zoladex injections. My son, whose speech and communication difficulties continue is now being evaluated again by a paediatrician so we will just have to watch this space. And... I have another scan coming up but since as well as being brought up to be reserved, I am also wildly superstitious (still can't walk under a ladder or throw away the last piece of bread without wetting it first), let's just say that I will be tentatively crossing that bridge when I come to it.

Tuesday, 24 February 2015

High Five

Last month, my four year old son celebrated his fifth birthday. We threw a party in his local sports centre to celebrate the event. For weeks the preparation consumed our waking hours. We planned and worried about numbers, whether we should invite children from his school or past nursery, how many family members should come, and if, after all the effort and sweat and tears, our little bundle of energy would love or loathe his special day ? At times we wondered why we were even throwing a party. Maybe he was still young enough not to have any expectations ? We had sneakily managed to get away without throwing a party for the last three years, why break the habit now ?

But as any parent will tell you, there is something special about the number five. In children, it signals the end of the baby and toddler years. No longer can I call my son a toddler or a pre-schooler. I can't smile adoringly any more at strangers when he throws down the mother of all tantrums in my local supermarket, or shrieks his head off on the bus. From now on he'll be seen as a child not an infant. In short, he's reached a milestone birthday.

In the world of some cancers, the fifth year is also a milestone. It's the time when you can take a sharp intake of breath and tell yourself that if the statistics are correct, you've managed to beat the disease and can now possibly look forward to a long and healthy life. I'm not actually sure which cancer this applies to since I've only ever heard about the legendary 'all-clear' in films and on TV. And we know that breast cancer doesn't easily fit in any category. But still, there is something magical about reaching year five with any metastatic cancer. Not only have I managed to beat a retrospective statistic which gave me on average a survival period of two years, I have remained healthy and have had the luxury of being able to live a normal, stressed-out life; just like everyone else.

A few weeks ago, I sat in the clinic of the same hospital in London where I come every three months to find out if I am still in remission. It's never easy being able to casually while away the hours when I see others being wheeled into the room in wheelchairs, adjusting their nylon scarves that cling stubbornly to their balding scalps. It is never easy to watch women younger than me walking with a stick or being helped into their seats by their husbands. But this time round, there was much to smile about. A day after my 46th birthday, I sat in a chair in the office of my consultant (who I've known for so long now that whenever we meet, we exchange info on the progress of our children) as she happily gave me another good scan result. With almost tears in her eyes she recounted her experience at a conference recently where she used me as an example of a 'thriving' patient. I tell her that I often feel tired and fatigued, not thriving - but happy to remain on the medication regardless of the side-effects, for as long as I can. I almost hug her as I leave.

Five years of doctors' appointments, treatments, drug prescriptions, injections, vitamin supplements and the occasional bouts of anxiety as I mentally drift between the time zones of past, present and future. It's certainly been one mother of a roller coaster of a journey. Here's to the next five.

Saturday, 17 January 2015

A Journey Through Time

Well, hello.

I'm not quite sure how to begin this post since it's been so very long since I last dropped by. As you can imagine, a lot of things have happened. I've tried many times to reconnect with my pre-work, pre-preschooler, cancerland life by blogging again to keep you all updated, but as any busy working mother will tell you, there are some things that you just have to put on hold until you're able to steal enough precious time and energy from another activity to do them. Since it's been so very long (a year and almost a month ! I know, the shame, the shame...) since I last put fingers to keyboard, I feel that it's only right to give you a brief synopsis of my 2014 life in a nutshell.

Before I start, I must emphasise that I don't expect anyone to be hanging out in the blogosphere, eagerly awaiting my words of wisdom and enlightenment. I originally started this blog purely for selfish reasons, to a) find a good looking afro wig, and b) to offload a lot of shitty feelings that I was holding in as a result of having been given the worst possible diagnosis of my entire life. The fact that I received so many lovely comments and feedback as a result, has only ever been a bonus and I feel eternally grateful to those of you who were kind enough to constantly remind me through the hell of chemotherapy, radiotherapy, surgery and trauma of receiving a metastatic breast cancer diagnosis, that I wasn't alone.

But 2014 was a good year. Firstly, I remained cancer-free; that means no Big C in two thousand and fourteen ! I recall at least three scanxiety moments that were generously spaced out enough throughout the year for me to forget the nail-biting experience within a month of receiving a positive negative result. I would often think about posting just before my results was due, but would worry too much about jinxing the outcome. Then I'd think about posting after the dreaded experience but would then be too relieved and in need of a large glass of house red to sit dutifully in front of a computer describing my feelings. But I've always maintained that anyone who blogs about the process of living with cancer, should blog about the good days, as well the bad - since it's the bad days that usually make us feel lousy and low enough to want our share our feelings; when the going is good, we often want to run the other way.

Secondly, another reason for my late return is that I've been working. Damn hard. I have covered a maternity leave role, moved up to four days a week and attempted juggling an extremely busy, demanding job with trying to encourage my four year old son to speak (he has some communication issues). The demands of the job almost killed me (now that would be ironic) and at times I wondered if I was submitting myself to some form of punishment. Perhaps I felt guilty for still being alive when other weren't. I don't know many other mets ladies whose new 'normal' (in terms of work/life balance) is more hardcore than their old life. From the many accounts that I've read online, most women give up work, happy to devote spending the rest of their lives hanging out with friends and family. But not me. Work for me equals normality. And while I'm busy being normal, I'm not busy thinking of cancer. So all things cancer-related tend to take a backseat, including dear reader, this blog.

But, if truth be known, I've missed this blog. I miss it every time I hear that someone that I've met as a consequence of having this disease, has passed away. The feelings of shock and helplessness and complete and utter sadness never gets any easier and I often find myself wanting to run to a place where other people understand these feelings, which are kept hidden away for self-preservation, and away from normal life.

I won't go into too much detail about my current treatment, which is fine and I'm coping well despite being on hormonal drugs that give me hot flushes and fatigue, but it's do-able and manageable so I'm not complaining. So let's just say that that's it for now. After a year away, I realise that there's a lot of catching up to do. But since one of my many resolutions for 2014 is to focus on the journey rather than the destination, I want to be the first to acknowledge that these things take time.

Wednesday, 25 December 2013

The Joy of Being Average...

It's Christmas night. The toddler (who is fast turning into a highly spirited pre-schooler) is fast asleep, clutching a toy dragon and recovering from an over-stimulation of chocolate, wrapping paper and an abundance of interactive toys. His father and grandmother are asleep too. I'm slumped in front of the TV, watching yet another re-run of Love Actually (can they really not find anything else put on at this time of year ?), having stuffed myself with a huge christmas dinner, followed by a few glasses of prosecco and a handful of chocs. A few phone-calls have been made to distant, but close family members. We've even managed to skype my sister all the way in L.A. The fairy lights twinkle on the small tree which sits comfortably on the lounge table. It's just another average Christmas in a very average household, and one that will be echoed the world over. Some might call it boring and yearn for a change in routine. Me ? I've loved every minute of it. It's been an average Christmas that hasn't included having to take an abundance of drugs, or make trips to A & E in the early hours of the morn, or self-adminster injections to myself. The most pressing worry that I've had all day is the excessive amount of money that I've ended up spending on the finer things in life (like the delicacies in the local Sainsbury's) after hearing that my very refined sister and her equally refined husband were due to make an appearance at chez moi on the most stressful day in the culinary world. After filling my trolley with some of the most sumptuously fatty and sugary items that would scarcely make it past my front door even during one of my weaker moments, I set about trying hard to think of a menu that could incorporate my strict abstinence of everything but the bare nutritional necessities of the modern diet - namely fruit, veg, a few carbs and the odd bit of oily fish. It wasn't easy. I soon realised that not 'doing' dairy or sugar pretty much wipes out most of the average yuletide menu, and allowing yourself nothing but 85% dark chocolate and a few cashew nuts doesn't feel like much of a treat when everyone else is tucking into lemon tart and christmas pudding.

As it happened, my sister and her husband couldn't make it in the end. Something to do with having a heavy cold and needing to check up on an elderly in-law. Of course I was disappointed. It's not every day that I spend the equivalent of a month's shopping in one go (and to be honest, being something of a frugal spender when it comes to normal supermarket visits, I'm not sure that I really want to relive the experience again). The old pre-cancer me might well having ranted and raged about the injustice of having wasted so much money on food that I really had no intention of ever eating, the current me ? (I'd love to use the word 'post-cancer' in this instance, but being of superstitious extraction, I'm afraid that I might well jinx myself in the not-so-distant future). Let's just say that I took it with a pinch of salt turmeric, and instead was more than thankful that I had the luxury of being able to cook a meal without wondering whether my tastebuds would catch-up and be able to actually savour the flavours (anyone who's ever been on chemo will know what I'm talking about). Having been able to avoid chemo for a whole year has been fantastic, but having been cancer-free and in remission (otherwise known as the much coveted long-term fling with the beloved NED) for 365 days has well and truly been the icing on the cake.

Merry Christmas to each and everyone of you. Here's to many more average Christmases to come...