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.

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.

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.

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.

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...

When Harry Met Sally...

The other day I bumped into someone who I hadn't seen for roughly two decades. He had been a student of film when I was studying English and we'd had mutual friends at a time in my life when partying and socialising seemed to be never-ending priority pursuits. I was coming out of the building where I work when he happened to be passing at the same time,

'Hello, remember me ?'

'Hi, yes of course I do ! How are you ?'

'I'm fine. And you ? You look really great ! I love your look !

Now to any other woman at any other time in her life this would be noted down as a great, no strike that, fabulous moment. An attractive man who you haven't seen for all of 20 years bumps into you and utters (before the usual 'so, what are you doing now ?') how good you look has to be the stuff of a Hollywood rom-com. At this point I feel obliged to state that although I'm already spoken for, at times it still feels great to get a compliment from a member of the opposite sex. Of course, there's always the possibility that it could have a double-edged meaning. Perhaps in my awkward 20-something days when I was so caught up in pursuing a career there's the chance that I may well have let my appearance slide at times. It was certainly a long time ago, but I don't remember ever caring too much about what the current weave trend was or whether I looked like the girl from the latest music video. I'm certainly not saying that I do now, but it's amazing what an unintentional hairstyle can do.

I thanked him, smiled sweetly and we carried on catching up. The rest of the conversation isn't that interesting to recall here but what struck me as important from this encounter was the fact that in no way did I give him the slightest impression that I had spent the last two years of my life dealing the one of the most devastating diseases known to man. If I had walked out of the door limping, I would have elicited more sympathy. Should I have honestly told him how rough the last couple of years had been ? Wouldn't it have been more honest of me to tell him about the experience of chemo, radiotherapy and surgery while looking after a child who was barely a year old ? Should I have done by bit for the cause by explaining exactly what metastatic breast cancer is and why I'm still able to function despite the loaded sound of the illness ?

I guess I'm either a pollyanna type or a coward or maybe I just didn't want to scare him away but I firmly said nowt. Not one sniff of the C-word. It just didn't seem appropriate and I guess I was reluctant to burst the bubble of joy and surprise that comes with re-aquainting yourself with someone that you haven't seen for a while. I found it much more pleasurable to talk about the experience of having a child for the first time, or speculating what other long-lost friends might be up to or sharing gossip and titbits about other mutual friends who I sadly don't connect with any longer. Stepping out of my persona of the successful, career-minded 40-something working mother and into the role of chronic cancer patient just didn't seem that appealing and for once in a long time, since I didn't happen to be experiencing any tell-tale side-effects from the treatment on that particular day, I had the luxury of being able to choose which person I wanted to be.

As we parted after a big hug and promise that we'll search for each other on Facebook (where else ? gone are the days when folk would exchange telephone numbers but then never get round to ringing...) I walked away with the thought that my life is well and truly surreal at times. Why is it more acceptable to talk endlessly about having a stinking cold or the fact that I almost broke a bone in my foot while on holiday, yet speaking at length about an illness that affects one in three us in our lifetime still has the power to halt a conversation in its tracks ? Believe me, I have tried it in the past, thinking that it was far better to be brave about my 'coming out about the Big C' then hide it under a bushell. But the response has always the same - a sharp intake of breath, followed by something, anything that might fill the uncomfortable gap in conversation, usually followed by a hasty retreat. Just before I continue, I have to admit that I'm probably no better. Seeing a colleague recently wander over to my desk to say hello after having spent months off sick from having a stroke, found me in a similar position of not knowing quite what to say. I felt ashamed of myself as I fished for words that might trigger a joke and finally realised what it is that makes others so tongue-tied. Human beings aren't necessarily programmed to cope with new or difficult experiences if they've had no prior warning of them. Sometimes flight seems to like an easier option when faced with the question of your or someone else's mortality.

In a way I guess that I'm lucky that my close crop gets such a seal of approval and it was great to talk about my life without for once having to factor in the cancer bits. But I wonder how the conversation might have gone if I was having one of my bad days ?

Is All Cancer Metastatic ?

So October 13th, 2013 was Metastatic Breast Cancer Awareness Day. Were you aware of this ? Nope, me neither. I heard barely a whisper about the date on UK radio or TV. Actually, I'm lying. Having more than just a passing interest in the subject, I'm aware that buried somewhere within the mountain of pink ribbon paraphernalia is an awareness day that doesn't sit easily with the media. It doesn't have the feel-good-triumph-over-tragedy story of its younger early-stage sister. Metastatic breast cancer day rather ambitiously aims are to inform the general public about the realities of living with an incurable but often treatable disease. Only there's a problem with the branding. How do you make something that's 'incurable' but treatable sound anything less than 'terminal' ? And terminal can only mean one thing when seen in newsprint - that short-cut rat-run to the pearly gates (or the furnace depending on how good/bad you happened to have been in your past life). The problem with metastatic breast cancer is that even though, by virtue of the fact that you're still alive and kicking, you're showing the world that you truly are surviving, you will never get to that day when you can say that you're a survivor. As anyone who has lived from scan to scan will attest, the ok months sandwiched in between feel more like a reprieve than a remission. When I was diagnosed with primary breast cancer, I lived for the day when the treatment was over and I could get back to 'reality'. Only once I was there, I realised that this state of nirvana doesn't really exist. And once I was away from the drugs and the doctors and the hospitals and the drains, in my head I never really felt that I had truly managed to take the exit train out of Cancerland forever. Despite the hormonal treatments, the zometa infusions, the nightly sweats which keep me awake at night and the hot flushes that make me fuzzy-headed during the day, on the outside I look like the same old person, albeit with much less hair. And because of this, sometimes it's hard to talk about my illness. I either get the head cocked to one side pity face of here's-a-woman-who-will-never-live-to-see-her-son-grow-up or better still, 'so, when are you going to get the all-clear ?' All cancer survivors live in a constant state of limbo. We're encouraged to get on with our lives and live for the moment and other nonsense cliches, while at the same time trying desperately hard to keep keep everything as normal as possible when the future seems so uncertain. Perhaps in order to truly raise awareness we should do away with the differences between metastatic and primary breast cancer and just change the way that we view cancer in general. As Susan Love articulates in her article, 'All Cancer is Metastatic', perhaps the differences between the two types of cancer are not really that different at all.