Sunday, 18 December 2011

A Farewell To Arms

The other day, I logged on to Facebook and read a link that someone had posted about the death of the writer and broadcaster, Christopher Hitchens. It shouldn’t have come as a big surprise. He had been diagnosed with stage four oesophageal cancer over a year ago, just like his father had done before him. Prior to this, he had unashamedly confessed to having spent a large portion of his life filling his vital organs with copious amounts of smoke and liquor. He had always expected this to happen, but perhaps not so soon. Even so, I couldn’t help but feel sad. I never knew him and am sure that had I done, I might well have despised him. As well as talent, wit and intelligence, he also seemed to be a victim of his own ego and arrogance, which often revealed itself in the form of anger and impatience in television broadcasts. But he was, for the last year and a half of his life, a cancer patient like me. And I remember feeling buoyed with hope and admiration when I discovered that despite the grim prognosis, he still seemed to work and write with the same passion and enthusiasm as before. His writing about cancer seemed to give him an aura of immortality. Here was a man who couldn’t possibly die, not when his writing felt so very alive. And while his words had the power to rouse and rankle all that read his work, they also gave us a false assurance that perhaps here was a man who really was in control of his destiny. Because despite the illness, despite the grueling treatments, he could still do the very thing that gave him the most joy in life, he could still write. The irony of this is that as cancer patients, control is the one thing that we most desire but are the least likely to attain. His passing saddens me because as well as thinking of him as ‘another one bites the dust’, I can’t help but feel the same sense of frustration that I felt when I heard of the deaths of Steve Jobs and David Servan-Schreiber. Both were men were made no secret of their illness, both spent the last stages of their lives actively living with cancer, rather than dying from it. They were great role models for those of us who still struggle daily with the sense of a dual identity given to us by this illness.  

I’m not ashamed to admit that my feelings of sadness also come from a source of my own selfishness. Because for every wealthy, robust individual in the public eye who doesn’t make it, the hope for little ole’ me being able to keep the big C away from my door seems to grow smaller and smaller each day. But metastatic breast cancer is a strange beast. There are examples of women who have lasted just a few years after diagnosis, while others seem to just keep on going and going.  But stranger than this, is the emotive power of the ‘C’ word. Despite the fact that cancer is a collection of more than 100 diseases, diseases that are so diverse in both type and biology that they could easily be categorised as completely different illnesses altogether, I am still able to feel intense feelings of empathy for individuals and their families affected by this disease who I’ll never, ever meet. So farewell Christopher, farewell David, farewell Steve. I never knew any of you at all, but your passing and your achievements despite your illness, will always remain in my thoughts. 

Thursday, 8 December 2011

Shooting From The Hip...

After almost a week's sojourn in the lovely little Italian city of Lucca, I can wholeheartedly declare that I  have returned a new woman. While my stay sadly did not include gazing at the Tuscan valleys from the comfort of my hill-top villa, as is so often the case with the many British tourists who visit and then subsequently decide to live in this wealthy part of Italy, I still managed to enjoy this city by wandering through the medieval, cobbled streets, doing a great deal of window shopping and stopping off along the way to enjoy a quick espresso. While I was there, I was so busy taking in photography shows and food markets, that I scarcely had time to think about the devastating news that I'd received just the week before. And while the sword of Damocles once again seemed to be wavering precariously closer to my head, I could at least feel smug in the knowledge that even if it was for just one week, for once I had managed to outfox those bastard cancer cells - by booking a trip to a place so gorgeous and thoroughly historic in both architecture and mood, that sometimes, just sometimes, I could fool myself into thinking that I'd stepped back in time and that my new reality really, really wasn't happening to me. 

But I guess all dreams, no matter how real they might seem at the time, have to come to an end. So once again I'm back in the land of scans, referrals and blood tests. I've chosen this time to tell very few people about my recent diagnosis, mainly because I'm not really sure how to. The few friends that I've told have understandably enough, been concerned but hopeful for me. My family, of course feels the same way too. Maybe I'm just a bit worried about being written off. Perhaps deep down I'm hoping that when friends, acquaintances and colleagues see me out and about with my steadily growing hair and my (literally) juiced-up skin - they'll think how great it is that I've recovered - and I'll be taken seriously and welcomed back into the world once more. Perhaps I'm reluctant to be seen as the hopeless case. I'd rather be the survivor who triumphed over tragedy. But of course, things aren't quite so linear. Not where cancer's concerned anyway.

But everyone is keeping positive - positive in the hope that the next drugs will work much better and for a longer period of time. 'If I can't be cured' I told a friend over the phone the other day just after my return from Italy, 'I don't care what they have to do to me, as long as they keep me alive'. And this is I suppose, what they call the 'new normal'. When it becomes normal to say 'I have cancer in my body but I'm still alive' instead of 'I had cancer in my body and I've still survived'. It's amazing how quickly the mind can adapt when it's in crisis. So while I may have lapsed a bit on the no dairy, nearly no refined sugar, no coffee (I'm not even sure why I'm abstaining from this last guilty pleasure as Italy is most definitely not the best place to be when you're trying to abstain from cappuccinos), this week I'm mostly back in Cancerland together with the fresh juices, the turmeric and whatever else I can discover which might help me fight the adversary that I've yet to meet.

You see the difference between having primary or early-stage cancer (basically cancer that hasn't spread) and having metastatic breast cancer is how doctors treat you. Let's use the analogy of a gunfight. When you have primary cancer, the docs go in with guns-a-blazing, throwing the most aggressive treatments at your body in the hope of eradicating it of all disease. They draw, shoot and the opponent falls. And hopefully he doesn't get up. And you're free to get on with your life, however battered and bruised you might feel in the process. But when you're diagnosed with the metastatic version, the opponent becomes more like the psychotic rogue robot, Yul Brynner in the film, Westworld. You shoot, he falls. He gets up. You shoot again, He falls, He gets up. But the next time he looks a bit crazier; a bit more out of control. You might be determined for him to die, but he's just as determined to stay alive. The thing that I love about this film, is that in the end, James Brolin (the good guy) outfoxes him. He holds back on some of the ammo, he figures out a way of second-guessing the robot. He doesn't show all his cards at once. And what I've realised, is that this is exactly how oncologists treat metastatic cancer. Treatment becomes more like a poker game where the skill of the oncologist is not so much about getting rid of your cancer, but making sure that your cancer doesn't get rid of you. And if this means using a combination of drugs, surgery, radiotherapy and even drug holidays to keep you still breathing, then that becomes your treatment. But it certainly isn't a one size fits all. And this is what makes their job so difficult.

So for now, I'll remain in this surreal parallel world, the one that consists of talk of radiation on an area that seems scarily close to the nerves in my legs, the one that talks about taking chemotherapy tablets as if they're paracetamols, the one that gives me lots of statistics, but no real answers and the one that I live in while simultaneously juggling within the world of building blocks and nursery christmas plays and creative ways to get the little one to eat more fruit and veg. And then there's normal life. Or at least the normality that I see other folks living while I move, sometimes unsuccessfully between these two zones. The lives of others (at least the ones that I only see from the outside) seem so simple and straightforward. They go to work, they go home, they have hobbies, they complain about their partners, they complain about being single, they complain about their jobs, they complain about being broke. They live simple lives. And I envy them for this.

But I'm getting used to the fact that this seemingly never-ending round of doctors and scans and treatments is my new normal. Because it's no different to what other women with this disease are facing. And as I enter the 'living with' phase, perhaps instead of hoping that I'll see the light at the end of the tunnel, I should merely wish for a wide, open road. Because if I can stay on this road and move forward without really knowing where I'm going while still being able to enjoy the journey, then perhaps the destination no longer matters.  All that matters is that I stay on this road for as long as I possibly can.

Thursday, 17 November 2011

The Good News About Bad News...

Even before my adventures into Cancerland, I've been a fan of hospital dramas. Perhaps this has more to do with the fact that my parents always wanted me to be a doctor (which has nothing to do with whether I was good or not at science, my parents just happen to be classic immigrants for whom the following chosen careers, doctor and lawyer, are the parental equivalent to winning the lottery). While watching Holby, or Casualty or Grey's Anatomy, I've often wondered whether it's better to hear the good or bad news first (that's assuming that there is always a silver lining after hearing the delivery of some terrible, life-threatening diagnosis).

And so it was that yesterday found me tense and sometimes on the verge of tears as I patiently waited in the chemo lounge for my doctor to arrive. I made a point just as I had done the day before when I was receiving my scan, of looking intently at the familiar faces of the nurses to see if they knew something that I didn't. I noted how the dietician, a girl that I'd never met before, came to ask me how my appetite was - a question that I don't think I've heard since I finished having chemo back in April. I immediately repeated this observation back to my partner who looked at me as if he thought that perhaps the cannula in which the herceptin was being adminstered had perhaps found a fast track vein to my brain, resulting in my current state of paranoia and delusion.

When my doctor turned up, it took a great deal of willpower and self-discipline to not immediately jump on her, wrestle her to the ground and demand that she tell me the good news first. You see, in the hospital dramas, they often don't have time to ask for the good, all the poor patient often hears is the bad and before you know it, they've been carted off to a remote part of the set, never to be seen again. So I waited and breathed deeply and tried to meditate on the questions that I wanted to ask her before or after she delivered what I began to convince myself was surely the reason for her changing my appointment so quickly and rushing from one practice to another to tell me this. Something that perhaps I now wish she had kept to herself for perhaps just one more day, or week or even month.

Because you see, by the time I got ushered into her office and sat down and tried to demand that she tell me the good news first, I found that I couldn't actually speak. Nope, not one clever word would make its way from my brain to my lips. I could only nod as she cut to the chase to tell me that the cancer had indeed returned. Six months after finishing chemo. Five months after my extensive sternectomy operation. This time in my spine. Naturally after this, I began to understand why no-one in the movies asks for the good news, because maybe, let's face it dear reader, perhaps often there is none.

But, despite the absolute devastation of this diagnosis, my onc thinks that things could indeed be worse. She's still optimistic, she still has hope. There are still many treatments, two of which I'll start soon and they'll include an oral chemotherapy tablet, another tablet whose name escapes me, and cyberknife radiotherapy - which is radiotherapy that is concentrated to one specific area only. The Good News (actually there really is in this case), is that it is only in one spot, which is a good thing. It really is. But the bad news is, I'm getting absolutely tired of these little, yes little, stubborn motherf***kers which are stopping me from getting on with my life. And to be too tired to battle on any longer is not such a good thing when you have cancer.

I'm so over chemo, and yes I know that it's the second syllable of the title of this blog but do you know what ?  I was absolutely in the process of almost changing this title, since I really and sincerely began to believe that I had said sayonara to the damn toxic drugs for a very long time, if not forever. But, there's more good news, I won't lose my hair this time so no new searches on the net for afro wigs just yet, but this does puts paid to a few plans of getting back to normality, getting my stamina back again and re-presenting myself to the world once more. Ironically, you are (apart from my partner and family members of course) one of the first to know. Because now, you see, I'm wondering how much to tell other people, and how much mileage I have left as a cancer patient before folk get bored of hearing about my drugs and side-effects and decide to leg it out of my life forever. So today, while I take a bit of time to process things, I have decided that the trip that is booked for next week, to a photo-festival in Tuscany, Italy, will still go ahead. Because I refuse to make my life all about my cancer. I will still take all the drugs and the juices and the turmeric powder mixed with olive oil and the vitamin D supplements and the acupuncture and the green tea. I will do all those things because I have a child who is not yet two years old who really, really needs me. So it's definitely not over yet. In fact, I'm already thinking, that despite the tiredness, despite the bad news, the fight to reclaim my body back has only just begun.

Wednesday, 16 November 2011

The Great, Gorgeous T-shirt Giveaway...

And while I'm still in the blogosphere, I forgot to mention that due to a mixture of my virtual disappearance around the time of Pinktober or more accurately, breast cancer awareness week and setting the yardstick perhaps a touch too high, Save The Tatas' great, gorgeous giveaway for October is still up for grabs. I would love to see it go to a good home, so now that we're firmly into November, I'll waive the challenge that I once set. The very first person to follow or comment on this blog (any post will do) will find themselves the proud owner of this very natty tee. Fingers on the keyboards now please...

The Waiting Game (Again)...

Apologies for my absence of late, but I've been a bit busy trying to juggle a well-needed break in the Canary Islands with baby A's new sleep patterns (which involve him waking me up in the early hours of the morn by banging his head against the cot in a worrying fashion - and then laughing when he realises that his trick has worked !).

I know, I know. I have plenty to write, plenty to catch up with. Plenty to tell you.

But first of all, let's start with my own situation. I'm currently experiencing another bout of scanxiety. And this time it's warranted. Just after my return from gloriously sunny Lanzarote, I had a CT/Pet scan done at Harley Street hospital. I always get a big jittery before scans but this time, and for reasons unknown, I was feeling very scared. Symptomically speaking, apart from a few aches and pains which I've put down to the trauma of the year's chemo and surgery marathon, I feel ok. I make sure I walk regularly and I eat very, very well. But the tightness and tenderness in my mastectomy side of my body is still around which has always bothered me.

So, while I'm lying in the room after having had a cannula put in and given a dosage of the radioactive stuff, I'm listening to some chill out music and I'm trying hard to chill out but mind starts to play the 'what  if ?' game. We're all familiar with this anxiety-ridden pastime which usually occurs when there's something that we're uncomfortable with or more accurately, scares the living daylights out of us. And that's when our mind takes over the rest of our body and really starts to go out of control. 'What if it's back ? What if it's widespread ? What if it doesn't respond to treatment ? What if it kills me before I really get the chance to start living again ?' The 'it' dear reader, surely needs no introduction. And as much as I hate to brood on things that are out of my control, this neurotic way of thinking has a way of sweeping me up at times.

So by the time I reach the scan room, my stomach is in knots. I look for clues in the speed in which my body moves through the chamber. This time it seems uncharacteristically slow. I look for clues in the way that the technician asks me when I'm due to see my doctor. I scan her face for expressions of sympathy or concern, but I find just an unreadable smile. So, the next day when I've calmed down a little and am thinking of the herceptin dose that I need to be given tomorrow (which is in fact today), I decide to call my doctor's secretary to see if she's had the scan results back as yet. I leave a message on her answerphone and I get a pretty damn quick and urgent call back. Her sec tells me that she needs to see me tomorrow night. I tell her that I'm due to have herceptin in the morning and will have to wait around in the hospital all day. I ask her if there's anything wrong. I call my doctor but she's not picking up. I leave a message asking her to call me. She doesn't. Her sec calls back. She's spoken to her and my herceptin has been rearranged for the afternoon. She'll try to come in as soon as she's finished her NHS clinic. I ask her again, if there's anything wrong. All she tells me is that there is something that is 'not quite right' with the scan. I wonder if she realises how long I'll hold these three words in my mind, circulating them around my head like marbles. I call my partner and tell him verbatim what has been said. He comes home straight away. I call my sister and ask if she can babysit the following day. But the words cannot come out. They won't come out. So instead I dissolve into tears. I tell my partner that I can't go through this again, so soon. I've barely recovered from the op. My fingertips are still tingling from the taxotere. My hair is still well, barely there. He hugs me. They are both so positive. They talk about false positives, inflammation and scar tissue. Maybe it's nothing at all. I reply that I know my doctor well enough by now. I know that she wouldn't give me reason to worry unnecessarily unless she had to. I also know how much she hates to be the bearer of bad news. It would be unethical to give me such bad news over the phone.

So there you have it. I'd love to tell you all about my hols and how we almost didn't make it due to me leaving the passports on the train (chemo brain strikes again...!), I'd also love to tell you about the current state of my hair and how interesting I'm finding it when I'm sometimes mistaken for a young black man, but... everything's on pause until I sort this mess out. Please think of me, or better still pray, chant or do a rain dance for me. It could be something, I hope it's nothing. But I'll keep you posted. For sure.

Monday, 31 October 2011

5 Things to do for a Cancer Patient...

Somewhere back in time I promised to write an antidote to my semi-rant about things not to say to a cancer patient. Well, that time has come. I wanted to write about the things that you should say to someone with cancer but after thinking about it, I realised that I'm not really a 'should of' kind of person. By this, I mean that something doesn't suddenly happen when you get diagnosed with the big C. You don't suddenly turn into the same kind of person as Reg sitting opposite you who was diagnosed with bowel cancer last month. Maybe Reg really likes it when people give him a hug every time they see him and ask him how he's feeling. This doesn't mean that I will. To state the bleeding obvious as usual... my point is that we're all different. And just because I've been diagnosed with cancer, it doesn't mean that I've suddenly become all homogenous. So, following on from this logic, I'm thinking that instead of telling you what to say perhaps I could just suggest how to act, based on how other people have acted towards me. To all my fellow cancer buddies who read these suggestions and disagree, please feel free to contradict me. In my pre-cancer life I loved a heated debate. Four months of hardcore chemo has kind of robbed me of that vital energy needed to disagree and then construct an even better argument in response, but I'm still the same 'ole cantankerous me underneath it all. So, are you ready ?

Five Things To Do For a Cancer Patient 

Offer Specific Help  
Are you an expert cook, love to drive or a brilliant cake maker ?  Do you have a special knowledge about nutrition, masage or reiki ? Can you knit, sew or make fabulous home-made cards ? Y'see, to date, I've had a cake especially made for me by someone I never knew could bake, a compilation of chill-out music put together for me by a friend who loves music, a couple of wigs bought for me by friends who love grooming, some software uploaded onto my computer by a friend who's a computer geek, jewellery made for me by someone who does it as a hobby and i've been referred to an expert acupuncturist by an osteopath friend. All of this from peeps with special talents or knowledge that I knew nothing about. As anyone will tell you who's ever had a really delicious meal cooked for them, there's really nothing better than receiving something that's been made or created especially with you in mind. Nothing. No amount of cash or lottery wins can ever trump this. If there is a better way to say 'I really care about you', please let me know what I've been missing. 

The key is to think about what you do really well. Then do it for the person that you care about. And it doesn't have to be a craft. Maybe you love hanging out with kids. Or are happy to do a bit of cleaning. When you have cancer, the last thing you really want to do is ask someone for help. Why ? Well, for most of us our self-esteem is already kind of low. We've been told that we've got this horrible disease that no-one else wants and we have no idea how the hell we got it. We just know that everyone else looks healthy and we're not. We blame ourselves for all those burgers and fries that we gobbled down in our teenage years. We wish that we'd eaten less dairy products. We wondered whether we should have eaten more veg and spent less time vegging out on the sofa. We're also usually experiencing too much trauma to think about whether you might be better emptying the bins or picking up some shopping. In short, we're not in control even if we look as though we might be. So do something and don't worry whether the person doesn't appreciate it at first. In time they will. 

Act Normally  
I know it's hard. One day you had a friend who did all the things that you did, the next you're sitting next to a person who's telling you that they've been diagnosed with a life-threatening disease. All kinds of stuff is going through your head - like maybe it could happen to you one day. As the evolutionary psychologists keep reminding us, we may have abandoned the savannahs for cosy nights in front of the tv but you just can't take the homo erectus out of the human. So when we're faced with a threat what do we do ? Yep, it's flight or fight time. Well sadly they'll always be some folks who'll just take the opportunity to beat a hasty retreat. The experience is just too close to home and way too frightening and they'd rather keep a safe distance with the justification that really they don't what to say or do. But for others with a bit more balls and common sense, your friend with the tumour might just want a bit of your humour and to be reminded that she existed as a person long before her journey into Cancerland. 

Tell her that you're thinking of her 
I know that this isn't everyone's cup of tea but to be honest, I love hearing these words. Even if it's just a short text, or an e-mail sent in a hurry. It always makes me feel much less alone and much more connected to the person who sent it, even if they are thousands of miles from me. I once received an e-mail from a friend who was sitting on a train on the way to Rome. He told me that he just wanted to let me know that he was thinking of me. At the time I was lying on my sofa, tired and achy from my cocktail of chemo and herceptin. It opened up the space for me to tell him how I was feeling and made feel less isolated. For me, it was important to know that people cared. And yes, I know that my partner and my mum and my sisters and my dad and a handful of good friends and family members also really care but to hear it is just, something else. And more importantly, it made me think about them too.

To her rants about doctors, nurses, hospitals, veins, cold caps, chemo and radiotherapy. Listen to how terrible she felt by the time she got off the train. Listen to how her tastebuds have changed, how she can't move her arm properly, how she's thinking of seeing a homeopath, how she's just read a book about healing. Listen while she laughs about what one of the other patients said to her - even if it's boring and you feel tired and uncomfortable and your mind begins to wander. Listen. Because when you're gone she'll be alone with her thoughts and her fears and her uncertainty. And they'll be no-one there to distract her then, or to laugh at her jokes or to sympathise. So just listen. 

Make it about them.
I live in a big, sprawling, anonymous city called London and I think that this sometimes makes folks a little bit, how shall I say, self-absorbed. So for this, I'll forgive them. I'll forgive the friend who rang me up to tell me about his own problems; perhaps in doing so he thought that it might help me to forget about my own. I forgive the friend who called me to blame me about something that had happened in the past. Because really I know that deep down the attack was about her own guilty feelings, not mine. I'll even forgive the friend who never replied to my text when I asked her for a hospital visit on a particularly lonely day, and made sure that she waited until the evening when I was too groggy and tired to receive guests to ask if she should come. I know that this is sounding like I only know a bunch of selfish arseholes, and if I just read this, I'd assume the same thing too. But if I told you that these very same people sent me cards and gifts on a regular basis, checked in regularly to see how I was, turned up with fruit and presents and spent the day or evening chatting and making me laugh, you'd feel confused. The point is that nothing is so simple. We're all too damn complex. And like cancer cells, unfortunately, there really is no black and white. Kind people sometimes say stupid things, intelligent ones act selfishly, caring ones run away. We're not so in control of our emotions as we'd like to think. But if you can't help yourself, if you just don't have the coping skills and have no idea what to do or say next, just focus on the person. Don't make it about you. Just imagine what that person might be feeling and go with it. Don't feel guilty, don't feel pity, just let them lead you this time. 

So there you have it. Yet another top five. Anyone care to expand on this ?

Sunday, 30 October 2011

Better Late Than Never

Ok, I have a confession to make. I feel deeply ashamed. After all the promises that I made in my last post about the wealth of blogging that I'd be doing to celebrate (celebrate?) breast cancer awareness month, I feel embarrassed that it's taken me exactly 20 days to write a follow-up. Why the delay ? Well, what with the cooking, the cleaning (and now that he's getting bigger, stronger and faster) the wrestling of Baby A, I'm currently experiencing a bout of baby-related fatigue. If you ever feel the need to test your levels of endurance and stamina after having completed four months of chemo and undergone a major operation, forget about running marathons, just have a baby instead. Add to the mix a leaky bathroom ceiling which turned into a full-on re-plastering project and a car crash (luckily a minor one) which left me with a case of whiplash and a dodgy back; you'll understand why it's taken me so long to get back to you.

I still found time to see the new SJP rom-com about a mother who juggles motherhood with her career and came away thinking, y'know what ? I still don't know how she does it, really I don't. 'Her' meaning those power-dressing, power-hungry women who manage to hold down a super-exec job while starting up a multi-million pound company from their bedrooms while also juggling three children and keeping their equally power-driven husbands happy. Who are these aliens who do such a great job in making the rest of us feel so inadequate ? And what exactly do they run on ? Is it 100% pure distilled vodka or better still, daily shots of Jamaican Wray and Nephew overproof rum (now that would be something worth trying...). I would love to know the answer. On a postcard alien women. On a postcard please...

But, at least I can console myself that I have one up on them. A super-exec I am definitely not. But at least I can proudly say that not only am I currently juggling a teething toddler, a flat with a crumbling bathroom wall (long, long story best left untold) and an imminent return to work after a two year break,  I also have metastatic breast cancer and can consider my attendance to all those scans, surgeries and visits to the chemo lounge as being the equivalent of holding down a full-time job. Which means that I surely should be up there with the best of them ?  But anyways, let's get to the real reason why I'm blogging today, which is not to have a moan about never having enough hours in the day as a new mum. There are truly enough mummy blogs out there which cover this overtired (excuse the pun) theme in a much more articulate way than I ever could. Let's talk about Ladies.

My long overdue post was going to high five a bevy of inspirational phenomenal women who have in their own small way, made a significant contribution to the understanding and awareness of breast cancer. Since we only have one day until the end of this month and therefore, until the end of breast cancer awareness month, I'm going to have to pretty much condense my high fives into a list of hasty shout outs instead. So here goes...
Set up nine years ago by Marina Raime, a young mixed-race woman who was diagnosed with triple negative breast cancer, this is an excellent and much needed resource for black and minority ethnic women. Marina spends most of her time campaigning and educating black women about triple negative breast cancer and how to spot early signs of breast cancer.
The brainchild of the very lovely and inspirational Kris Hallenga who was diagnosed with secondary breast cancer at the tender and unbelievably young age of 23, this funky site is aimed at the 18-30 market and campaigns to raise awareness of breast cancer among young people. Coppafeel travels the country popping up at places as diverse as music festivals and tube stations using gimmicks and eye-catching PR stunts to attract publicity and raise awareness.
I should have a blog roll or list or top ten or whatever you call it. Y'know, a list of great fellow blogs. Because there are surely so many of you guys out there writing who never cease to motivate me or make me laugh or better still, educate me about what I should be reading or watching to retain some kind of sanity while dealing with this shitty disease. But I only have time to high five one today and so it's going to be Nicole of myfabulous-boobies. There are few black and minority voices out there in the breast cancer arena and even fewer of us blogging. So it's always encouraging to drop in on her thirty-something world of dating, dealing with her diagnosis and finding love after breast cancer. Always amusing, always heartfelt. Great writing.

So there you have it. I could go on. I should go on but it's late and I have at least two more blog posts to write before my deadline runs out and I hit the first of November and this website turns into a pumpkin (a what ? sorry folks, wrong story - that's how tired I am). See you in the morning...

Tuesday, 4 October 2011

Pink is the New Black...

Well, it's about that time again. We may not have had the long, lazy days of summer that our Mediterranean friends take for granted each year, but with autumn approaching, I vote that September's colour of choice should be brown. Brown is the colour of crisp, changing leaves and end-of-summer harvests. Brown is the colour of jacket potatoes and hot buttered muffins. Brown is the colour of knee-high boots, thick, chunky jumpers and all things warm and autumnal. But if brown is the colour for September, then what should be the colour for October ?  

Why, it's pink of course. 

Pink ? 

Surely, I hear you ask, with the summer season fading fast we should be getting into darker, more austere tones, not moving on to bubble gum shades of pretty or even prissy pink ?  But of course, for those of us who have been riding that train into Cancerland for far too many years, we know what October brings forth. For October is Breast Cancer Awareness month. And this is the month when you'll find an abundance of this sugar-coated colouring.

Now I have to admit something. I actually love the colour pink. Really I do. I am currently the proud owner of a pair of pink court shoes, I have pink t-shirts, even once bought a pink corduroy skirt and I can even recall being given a pink 'tag' belt by my partner many moons ago - such is my love for this effervescent, saccharine, pop art colour. For someone who has spent most of her life living in jeans and trainers, it might seem strange that I would feel so at home in a shade of colour more favoured by Barbie. But I do.

I guess I like the colour pink because it's bright, optimistic, it cheers me up on a wintry day and it goes well with the darker shades that I tend to wear all year round. It also looks really, really good against dark skin (as Ms Jourdan Dunn is illustrating so well above).

So I'm not too bothered about the colour of the branding, as long as the message is strong. Although I know that many of my metastatic blogger mates would disagree. Some of you out there in blogsville feel that images of smiley, pretty women wearing pink t-shirts and brandishing pink ribbons distracts us from the true reality of breast cancer. Simply - that it's a nasty, nasty disease that kills women. And I can see their point. Because simply put, it does. But the problem is more complex. The eternal dilemma for those who work in the media, is how to raise awareness and keep the advertisers happy while producing images that are shall we say, easy on the eye ? They assume that no-one really cares about the over 60s getting breast cancer (even though this group is the most at risk from this disease) because I guess they assume that it's no big surprise if they do. And they also assume that no-one really wants to see gruesome pictures of ulcerated breasts or emaciated cancer patients on chemo - especially not their advertisers. So, because pretty pictures of women are often used to sell everything from chocolate to cars, it is not surprising that interviews with slim, white, attractive, young breast cancer survivors tend to fill the pages of the glossy women's magazines. And all the better if they are career women who enjoy a middle-class lifestyle because these are precisely the women that the advertisers want to target.  Trust me on this one, I know. I've worked in this business for over 15 years. 

But the real problem with this stereotyping is the perception that it gives to other women who don't fall into this category. I have heard countless black women with breast cancer tell me that before their diagnosis, they always assumed that breast cancer was a 'white woman's disease'. In certain parts of the developing world, breast cancer is seen as the 'rich, white woman's cancer'. It is seen as a disease of affluence. But when we look at the statistics, it seems that we women of colour might be the ones who are most at risk from this distorted perception. In reality, although black women tend to be diagnosed less than white women, we tend to be diagnosed at an earlier age, have more aggressive cancers and are diagnosed when the cancer is at a more advanced stage, making treatment more difficult. Women of West African origin also tend to be diagnosed with what is called triple negative breast cancer. This is breast cancer that doesn't have oestrogen, progesterone or her2 receptors. The only treatment that can be given is chemotherapy. And this naturally limits the number of options they have for subsequent treatments, should they need it. For more information about this, this article is a good starting point.

Now I know that this month is important. It's important because it encourages women to examine their breasts. It informs people to look out for warning signs and symptoms, and it attempts to remove the stigma of breast cancer. But as a marketing brand, it surely needs re-working. And fast, before more women die through ignorance or complacency. So what will my contribution be to this Breast Cancer Awareness month ? What can I do to make a difference ?

Well, I write this blog because it helps me to process what I'm currently going through. And by doing this, I'm hopefully raising awareness to all different kinds of women too. But I don't fundraise and I'm not sure how much I really make a difference to anyone's day-to-day life. But what I've noticed while I've been immersed in cyberspace is that there are lots of fabulous, fantastic women who do make a difference. They put action before thought. They inspire me to get out of my self-absorbed head and write about stuff that might actually inform people. So for Breast Cancer Awareness Month... I'll be mostly flagging up these phenomenal women, looking more at the differences in breast cancer in black and white women, looking at how differently primary and metastatic breast cancer are viewed by public and press and listing the things to say to a cancer patient that might actually help rather than hinder them (thanks Paula for the great idea !).

But firstly, I'd like to give a high five to phenomenal woman, Julia Fikse for her website, Save The Tatas. I only recently discovered this site and subsequently had a series of e-conversations with Julia about race and cancer. What I like about this site is that it's a non-profit making organisation which uses money raised through donations and the sales of its products to fund much needed independent scientific research on cancer - research that one day might help us all to overcome this disease. 50% of their profits over the last six years have been used in this way. For Breast Cancer Awareness month, Julia is kindly giving away this t-shirt

(especially hand-picked by moi) to one lucky person. All you have to do is follow my blog and tell me how you'd rebrand Breast Cancer Awareness Month to include all women - regardless of colour, creed or age.  I'm looking forward to hearing your ideas...

Friday, 30 September 2011

Cancer, An Artist's View...

I love, love, love this project and wished I'd thought of it myself. It's original, funny, sweet and sad all rolled into one. If you were on Twitter, Karl Baden - you'd be my friday follow... As you're not, I'll just have to make do with following your work from now on instead...

Tuesday, 27 September 2011

A (Harley's) Angel At My Table...

Now I know that some of you are going to find this post a little bit strange. And I don't blame you if you do, because it is. And before I start, I feel that I need to convince you that I haven't been knocking back the tequillas, nor have I just ingested a generous handful of class A drugs and am now experiencing the hallucinogenic comedown or cold turkey or whatever they call it in the movies. Because today, dear reader, I have to declare that I believe I met... an angel.

There I've said it. And now that I've written it, I feel that I need to explain. And fast.

You might be wondering where in one of London's grimy inner-city boroughs could I have possibly been visited by such a heavenly being ? Well, it was in a park, it wasn't after dark and he didn't have wings or was called Gabriel. In fact, he was the most unangelic man I've ever seen. He was tall, gangly, bald, rode a bicycle and ate a bag of chips that were so drenched with vinegar that the smell hit the back of my throat and for a moment I was transported back down memory lane - to my old school days where I once stood with friends, giggling outside the local chip shop and wondering which boys fancied us the most (which was usually a disappointing 'none of them').

Angel Clare (which I've now christened him, not because he bears any similarity to Thomas Hardy's character but because at first, I did indeed find him to be if not other-worldy, then certainly obscure) decided to sit next to me on a park bench while I sat, soaking up the last few rays of a warm September evening. I remember him shouting from his bike, would I mind him if he shared the bench I was sitting on ? Nothing wrong with this, I hear you innocently say. But you have to remember that we're talking about London here, where the only real conversations that normally take place on a day-to-day basis between strangers are 'what great weather we're having today !' and 'how rainy it is for this time of year !'. It is rare for a strange man to willingly sit next to a strange woman and spark up conversation. But this is what happened.

And after we got over the duty of well, talking about how beautiful an evening it was (well, what did I just say?) we very quickly moved on to talking about psychics and spirituality and being possessed by spirits. Now look. Hold on. I know what you're thinking. Yes, he sounds like a quack and I probably sound like a quackee for listening to him and you're now thinking of getting the hell out of my blog. But hold fire. There is method in this apparent madness. Really there is.

You see, I say this because just before we met, I was sitting on that park bench admiring the view of the London Eye in the distance, the smart Edwardian terraces which overlook the park and the sun which was casting a warm glow on my skin. I was feeling good, but maybe a little sad inside. I guess I was just feeling a little empty. I'd just left my partner and baby A back at the playground, but I was longing for more than just a bit of company. I guess I was feeling a bit tired of feeling so alone and disconnected. And while I sat there thinking, I began to berate myself for the mistakes that I'd made in the past which had somehow caused me to be sitting here all on my own examining my thoughts. If I'm not making sense here, then it's because it's a little complicated to explain. It wasn't that I was just wanting company. I was sitting there searching for answers. I was having another one of those blue days and I couldn't seem to shake off my mood.

Angel Clare started to talk and while he talked I listened. He told me that he thought I looked very spiritual because not many people could sit in such a quiet, serene way and stare at the sun in the way that I was doing. I told him that I wasn't sure whether I was spiritual or not and I asked him what he meant. He then proceeded to tell me his life story. He now had a very simple job driving and looking after kids but in his past life, he had been an engineer who earned good money and whose career had taken him to California where he'd lived a great life and had had nice things. But he hadn't been happy. He'd always felt that he'd always done what had been expected of him and what he'd thought would make him successful. Then a very serious motorbike accident changed his life. The accident had been so bad that he'd spent 6 weeks in hospital. In that time he hadn't been able to walk, or hardly move or even been able to use the toilet by himself. He had hit rockbottom and he was depressed. He prayed to God that if he survived with all his limbs intact, he would change his life. He wouldn't spend another day doing something that he didn't enjoy. And as it happened, he survived with his whole body intact. The day that he walked out of the hospital he felt euphoric. He was once again a free man. But now a traumatised one. He quit his engineering job and took a job working in a men's hostel where he ended up talking to men experiencing trauma. The talking turned into counselling and the counselling turned into working with children. And he realised that he loved it. He also realised that he'd wasted so many years doing a job that he had tried desperately to fit in to instead of just doing a job that felt natural to him. And the feeling was so different, that he couldn't understand why he hadn't realised this before. He also realised, through working with children, just how wonderfully precious it is to enjoy the present moment.  Not to just enjoy it, but to really experience it, to get to a place in your mind where you stop thinking of what you should have done in the past or where you should be going in the future. But just to enjoy where you're at. Right now.

Does this sound too self-helpy to you ? Too much like hippy-dippy new-age claptrap ? Too 'by-the-way I'm-also-a-Jehovah's-Witness-so-how's-about-giving-me-a-donation-and-I'll-see-you-this-Sunday-down at-the-local-Kingdom-Hall ?  Well, I'll admit to something. I'm the mother of all cynics. At first I wasn't sure about him. I even checked his hands for any shakes while he was talking to me. But what he said struck a chord with me. Because, of course I have just experienced trauma. I have spent more than six weeks recovering from my operation and during this time I have relied on the help of others. And during this time I have felt low. And ever since then, despite the positive news, despite the good recovery, I've been struggling with how to stop my mind from ricocheting between the past, present and future. I have been finding it hard to just enjoy and be grateful for the present moment. At times I have resented not having enough time to reflect on my thoughts. At times I have even resented being a mother.

I'd also read this article recently and had questioned the simplicity of the interviewee's response to his imminent death. Angel Clare knew nothing about any of this. He knew nothing of my inner turmoil. To him, I looked calm, serene and spiritual. But in talking to me so candidly about himself,  he made me in turn gaze into my own self and realise where it was I was going wrong. As we sat there admiring the trees, the beauty of the plants, the sunshine, the feeling of having all the time in the world, I realised one thing. These moments are rare. When a stranger sits down and talks to you about something that is already swimming around in your head, these are moments when you should sit up and take notice. It all sounds crazy I know and perhaps tomorrow someone will wave a magic wand and I'll be turned back into a cynical old frog again. But that conversation lifted me. It felt like someone giving me a kick up the backside. Today, well I'm actually fine and well and have a lot to be thankful for. And I should remember that. Today, I also learned two things. Never ever judge a book by its cover. And sometimes, the answer to your questions are staring you right in the face. All it takes is a different way of seeing things. And perhaps a visit from a chip-eating ex-Harley's Angel.

Wednesday, 21 September 2011

A Sweet Way to Say... Thank you

Ok. So for now, my ranting days are over (see last post for this statement to truly make sense). I'm done with the anger, I'm so over the rage and I'm saying hello again to my old benevolent self.

What has brought on this sudden feeling of inner calm and serenity ? Well, my last (and hopefully last ever) visit to my surgeon, that's what. Last week, I had my final check-up to close the chapter on an episode that has spanned three months and involved way too many visits and drainage bags for my liking. To toast this very special occasion, I bought him a small but luxury box of chocolates which were beautifully presented in a Chanel-style gift bag. I can't say that I'm aware of the protocol when it comes to giving gifts to your doctors but I was feeling so thankful that I no longer had to brave the streets of London wearing a colostomy bag as a fashion accessory, that I wanted someone, anyone to know this and I guessed it should start with the person who was responsible for relieving me of this sad, sorry little item.

I also bought a box for my oncologist and while I sat on the train on the way to my appointment to see her, I couldn't help thinking about the irony of the situation. Here was I thanking two individuals for filling my body with toxic poisons; poisons so toxic that they made my hair fall out, my nails discolour, my eyelashes, eyebrows and nose hairs disappear. I was thanking them for pumping me full of opiates, for cutting into me and taking away some important, but not vital parts of my body. I was thanking them for giving me pain, fatigue, immobility and wildly erratic mood swings. And at the end of it, neither of them could say for sure that in the future, I would not have to walk down this rocky road again. Was I mad for giving them presents ? Surely I should be lacing the chocs with arsenic and getting my own back after the ordeal that they put me through?

But of course, that's only half the story. Of course they did all these things to try to save my life. And if they fail to do this, prolonging it will have to do.  But what really impressed me about these two individuals who somewhere along the line, I couldn't help but fall in love with a little, was the dedication they showed to the job. I liked the fact that they cared - so much. And I didn't get the feeling that this was done for selfish reasons, like ego, or reputation or simply because they enjoy the fat salaries that the this profession obviously offers. My surgeon had strode in on the day of my operation looking exhausted and stressed and proceeded to tell me that he'd had umpteenth conversations about me with a variety of oncologists. He wanted to make sure that he was doing the right thing by operating on me. He didn't want to get it wrong. Similarly, my oncologist who, instead of being annoyed that I requested a second opinion, positively welcomed the move and honestly told me that since my case was unusual, she wasn't really sure how to treat me. She thought it would be helpful to hear from someone else in the business. She too, didn't want to get it wrong. We all know that for the drug companies, the business of cancer is a big one. We know that medical consultants get paid shit loads of money for what they do. We know that sometimes doctors do get it wrong. But it's nice to know that sometimes they can admit that they're human. That they don't know it all. And that they can feel vulnerable too, just like us. I appreciated their honesty and integrity and it meant a lot to me to know that I was more than just a hospital number to them. So the chocs were a way to say thanks for admitting to me that you're human, and thank you too for treating me like a human being. My surgeon looked pleased but a little perplexed when I presented him with the very stylish but feminine-looking gift bag. My oncologist, a woman after my own heart, just looked ecstatic to be given a box of chocs. She told me that the gift had been a lovely end to a very stressful and emotionally draining day. She'd spent the whole day being the bearer of bad news. I know well enough how it feels to receive that news. But I have no idea how it must feel to be the person who breaks it.

As a cancer patient, I thought it would be a long time before I could ever be in a position to make someone's else's day. And here I was doing just that. That day was a special one. That day, I realised that it is possible to move on and close a chapter while still leaving the rest of the book open. Today I had herceptin, tomorrow I'll feel knackered, but for now I feel fine. And hopeful. And ready to enjoy life again. Even though I have no idea what could be around the corner. And for me that's okay. For today, anyway.

Tuesday, 13 September 2011

5 Things Not To Say To A Cancer Patient...

I've been meaning to write this post for ages, but somehow I just can't seem to get it right. Each time I try to write a sentence, I find myself writing with rage rather than reason. I want to make this post sound humorous but all I seem to do is come across as harsh. At worst, I sound like I'm whining. But it's hard to deny my true emotions. Since I keep having a recurring dream which involves messy toilets (you really don't want to know any more than this, trust me), I'm assuming that somebody somewhere is telling me that I need to release. So let me begin.

Today let us talk about friendships, or in the words of the cancer books and counsellors, 'support'.

Cancer leaflets adore this word. We cancer patients are told that it's an essential part of our recovery like water is to a plant. Before I had this disease, the only time the word ever crossed my mind was when I was in the lingerie department of M & S and I'd stumble into what we would affectionately call 'the granny zone'. Suddenly I'd be face to face with flesh-coloured (well, not exactly the colour of my flesh, but anyway...) support tights, knickers and panty girdles. My face would contort with a look of disdain and I'd head for the nearest aisle of balcony bras and thongs. But now that I can count a mastectomy and a sternectomy as part of my body's ever changing landscape, I'm no longer in the market for uber-sexy underwear. I've decided that more is now infinitely better than less and I may well be making a swift visit to that 'granny zone' sooner than I had originally expected, But if nothing else, my first experience with the aforementioned word did its best to tell me that support is a thing that should lift you up rather than bring you down.

So, now that I'm back in Cancerland, I've been impressed this time round by how much support I've received from family, friends, aquaintances and work colleagues. But I've also been disappointed by the reactions of a chosen few who have pretty much run for the hills when they heard about my diagnosis. Now I know that this happens a lot. There are many fine articles on the net that describe the reasons why people shrink away from cancer patients. The underlying reason seems to be one thing only; Fear. And we all know that fear can make people act in very strange ways. So, instead of me using this blog to bitch about a few very flaky so-called 'friends' who disappeared before I could even say 'second opinion', I want to focus on some of the phrases that I've heard from time to time by friend and foe, followed by the responses that I wished I'd given at the time of delivery...

'It Could Happen To Me' 
This was a popular one. I'm sure the utterer's intentions were genuine. But often this statement would be followed by such a look of sheer terror that I would find myself trying to reassure person seated in front of me that actually, it probably wouldn't happen to them. Women who get diagnosed with breast cancer in their thirties and forties are uncommon. But then, I realised that I was pretty much saying , 'don't worry, I was a freak. It won't happen to you because well, you're not me. Luckily.' And okay, it's kind of true, who'd want to swop places with a woman now trying to come to terms with a stage 4 cancer diagnosis ?  But Jeez, people please. If I can't take centre stage and demand diva-style attention when I've been afflicted with a serious, life-threatening illness, then when else can I get the chance to hog the limelight ??  "This conversation was supposed to be about me and suddenly I'm the one reassuring you ?  Narcississm alert !! Get the hell off my sympathy stage ! It might not happen to you. I really hope that it doesn't. But then again it might, and I'm really in no fit emotional state right now to reassure you. Next !"

'Cancer in the bones ? It sounds terrifying !!'
"Really ? You don't say ? I thought it sounded quite reasonable to me... "
You know, I hate having to resort to sarcastic replies to inane comments but really, is there any point in stating the bleeding-obvious ?? Of course it's terrifying but I'm not sure whether anyone with cancer needs reminding of such a thing. We know the whole cancer experience sounds like one scary, fucking (sorry about the expletives folks but there's a whole lot of latent anger coming out in this post) rollercoaster ride that we'd rather not have to take. But if you can't think of anything else to say, well - tell me this. Tell me that you feel as gobsmacked as I do. Just don't make me feel worse than I already do.

'Don't worry, you'll get through this'
"Maybe. But will I still be standing at the end of it all or lying stiff with rigor mortis inside a coffin ? You mean you don't know ? Neither do I and neither do the doctors. I haven't got a common cold, I've got one of the world's most feared diseases. So stop presuming !"
I'm sorry. Here I go again sounding all harsh and horrible when a well-meaning comment like this is supposed to cheer me up. "Next time, how about adding a 'I hope' in between the middle of the phrase. See ? Now, doesn't that sound more honest and heartfelt ?"

'You've got to be positive'
Has anyone got a sledgehammer that I could use to hack into the set of voodoo dolls that I've made of all the people who have told me this ? Yes, positivity is a great thing but let's face it, when you've been diagnosed with a critical illness, the first thing you want to do is cry. Then scream. Then break up every piece of furniture within your house. Or you might go the other way and feel numb for months like I did. One thing I know's for sure... you certainly don't want to get out your clown outfit, dance a jig around the sofa and make plans on how you're going to keep yourself smiling. For people who can be wholesomely positive and remain so during the whole ordeal ? Lucky, lucky, lucky you. For the rest of us ? Go ahead and punch a few more walls, wallow in self-pity and afterwards curl yourself up into a screwed up mess on the floor. Or just go and make a voodoo doll.

'Cancer is no big deal these days, is it ?'
No reader, you are not reading a typo. Someone did actually once say this to me. And do you know what's even stranger ? I was so shocked by what she said that I kind of agreed with her ! I guess in my post-diagnosis state I thought maybe it was me making too much of my dilemma. Perhaps, compared to the starving in Kenya, cancer was no big deal. After all, I was still alive wasn't I ?  I wasn't being tortured in Kabul or stranded in the middle of a warzone in the middle east. But even if I looked composed from the outside, it sure wasn't what was going on inside my very vulnerable, chaotic emotional state of mind. Perhaps, after watching celebrity after celebrity skipping out of their cancer clinics wearing a smile that says 'all clear', many people now believe that it doesn't take much these days to get to this point. But maybe the whole celebrity of cancer thing deserves it's very own post. Because there's just way too much to say on this subject...

So there you have it, I could go on with more and more silly and annoying statements but I really don't want to come across as even more bitter and twisted than I'm feeling right now. And I don't want it to rub off on you. But now that it's off my chest, I'm already feeling a whole lot better. So thank you for listening... and goodnight.

Friday, 9 September 2011

When Treatment Ends...

Recently, I've realised that as a cancer patient, I've now entered a different phase of 'my journey' (for want of a better word). After the drama of leaks and dressings, my scars seem to be healing well. Even though my hair is still very short, it is now long enough for people to not look twice when I'm out and about. So much so, that the other day at my partner's family reunion, one lady remarked on how lucky I'd been to not lose my hair during chemo. My afro wig, the one that I went through hell to search for and get cut, now seems to be languishing on its own on one of my shelves. I now seem to be slowly reverting back to... myself. 

Gone is the gung-ho 'Just Do It !' stance that I adopted to get through all the treatments and side-effects of only a few months ago. Gone is the fuck-you-I-don't-give-a-shit-if-you're-looking-at-my-big-hair attitude that I seemed to possess throughout the whole ordeal. What's happened to me ? I don't even wear half as much make-up as I had done when I was on chemo, despite having attended a 'look good, feel better' make-up course and learned a whole lot of tips from those kind counter girls when I was seriously lacking in the eyebrow and eyelash department. 

I seem to have slipped into a new zone.

The zone that I refer to is often described by the cancer brochures as the 'when treatment ends' phase. You've struggled through them and are now feeling more like yourself again. Your body seems to be recovering well and you no longer spend all your waking days at the hospital wondering if you're developing a crush on one of your doctors. Emotionally, you should be feeling stronger. Everyone tells you that you're looking well and you get more than your fair share of compliments. These are usually heavily laced with adjectives like 'strong, courageous, brave, fighter,' yadda, yadda, yawn, yawn, yes, I could go on... there's a hell of a lot more where they came from. Deep inside though, you feel anything but brave. You feel relieved that for now, you can maybe try to pick up the delicate strands of your life from where you last discarded them. You know, before those nasty old bullies came along and tried to hijack your body. 

Personally speaking, this is actually a bit premature since I'm still having to pay three-weekly trips to the chemo lounge to get my regular herceptin fix. But apart from the odd bit of fatigue and some mild flu symptoms (including a very runny nose), I don't seem to be doing too badly. Feeling almost 'normal' seems to be fooling my brain into thinking that I'm okay again. Ok, not entirely normal since I still feel as though I'm wearing a breastplate of armour across my chest and the site on my back where I had my mastectomy still aches since my recent sternectomy. In fact, it often aches, a lot. 

But still, from the outside, when I'm breezing down the road pushing baby A along with the gayest abandon, you'd never think that I had (can I boldy use the past tense ?) cancer that  spread to my bone and liver. Mostly I feel grateful, even if I have no idea just how long or short this reprieve might be, I try to reassure myself from time to time by remembering how pleased my doctors were that the chemo worked so well. But other times, I wonder if I shouldn’t be writing up that bucket list today and preferably at least trying to complete, oh at least half of the activities before the year ends.

Y’see, while the cancer brochures and websites are great at telling us how to manage the side effects of chemo and radiotherapy and hot flushes and whatever other yucky effect your body might be reacting against at any given moment, no-one can guarantee how we’ll feel once the intensity of chemo treatment ends and once the trauma of pre and post surgery is over. Once everyone looks at you and tells you how great you are and what a trooper you’ve been but then suddenly stops phoning you. When you feel as though you should be getting back to normal life, but you’ve spent so much time holed up in Cancerland that you can’t exactly remember who you were before the nastiest of diseases jumped up from out of nowhere and gave you a couple of slaps in your face to remind you that actually, you’re not immortal. Your shit does indeed stink and you know what ? you will die one day, and it might well be sooner than you were promised. Maybe I’ll blame ole’ chemo brain but at the moment, I find it hard to concentrate on the most trivial of conversations. I walk and move among the world of the living, but sometimes, if I’m really, really honest, I feel so outside of everything that’s happening around me, that it can feel as though I’ve just stepped into a parallel existence. When I was first diagnosed with cancer, well, that was an experience. But there seemed to be an end and while I struggled to stay sane, after a few years and with my health pretty much intact, I bounced back. But this megastatic (c’mon let me have some fun with this dreaded word – puhlease ?) diagnosis is an altogether different beast. Here, no-one mentions that word we cancer patients so crave to hear. No-one dares talk about a cure.

So what am I doing about this ? Well, my mind, which has been so crammed full of talk of prescriptions and pills is now doing a u-turn and heading back towards the world of work. I don't miss the 9 - 5 but I do miss having some sort of identity. Some people think I’m mad to even embrace such a concept just yet. After all, it’s only been two months since my operation. I still tire easily and more importantly, I have a young baby to look after. I’ve taken this all on board, have gone back to seeing my therapist (just the mention of her makes me feel like one of those incredibly complex female characters that you find in a Hollywood thriller). At the moment I’m just happy focussing on my relationship with baby A. To be able to pick him up, kiss him, make him laugh, run towards him, run away from him and take him to playgroups with all the other mothers is well… more than words can truly express. No matter how hard I try. I had forgotten just how enjoyable it is to live in the present moment.  So for now, I’ll think I’ll stay in this moment. I’ll switch off the rational part of me that wants answers and return dates and certainties and just go with the flow until inspiration comes along...  

Sunday, 28 August 2011

Question Time...

While I'm in catch-up mode, I thought it was about time I kept you up to speed with what's happening in my currently not-so-fast-moving medical world. After my recent 'exploration' (where my surgeon no doubt prodded and poked about inside me with his scalpel), I am now the proud owner of a newer, neater looking scar. The wound still contains stitches or 'sutures' as they're more commonly known as, which I look at in semi-horror every time I need to change the dressings (which is currently every four days). Seeing live stitches still in my body does nothing but serve to remind me that someone out there has really has taken a needle and thread to my flesh and left behind the evidence for all to see. And as much as I hold anyone in high esteem who can cut open a human being, have a good old rummage around and remove a substantial part of their body without at some point keeling over out of sheer nervousness, stitches on skin only makes me think of one thing - Bride of Frankenstein.

So, at the moment it's thankfully all covered up and out of sight and I'm just relieved that I'll never have to leave the house wearing a colostomy bag stuck to my chest ever again. There are only so many smock tops that you can choose from which conceal this minor detail - believe me.

The other day though, I took a well deserved break from my usual routine of clearing up after Baby A's tornado-like movements through the house to pay a visit to yet another consultant who runs a private practice in Harley Street. I'd first met her all those years ago when I was being treated on the NHS. Back in those days time was always at a premium. I'd wait for a couple of hours to see her, only to get a ten minute chat, a quick feel of my reconstructed breast and I'd then be turfed out again, back into the real world. I remember how tough those check-ups used to be and how I'd dread having to relive all the gory details of my diagnosis. Even though it's been ten months since this recurrence, I still find myself welling up sometimes when I'm having to recount all the facts and figures. Since I'm now 'Appled up' as my partner likes to put it, and by this he means that with the acquisition of my I-Pad I now have the hat-trick of Apple products starting with my I-phone and ending with my laptop, I took my brand new purchase along to show her not only the second report that I'd sent to my other doctors, but also a long list of questions about my prognosis in general - most of which had been swiped from 'abstracts' on the net.

For those of you who aren't familiar with abstracts.... these are the nuggets of information that cyber-obsessed 'e-patients' like me scan through on a regular basis. What are we hoping to find ? God only knows - hopefully some eminent professor stating that a cure for metastatic breast cancer is just around the corner and if we could only hang on and stay alive for a few years longer, then we'll all be saved and able to wear the pink 'survivor' t-shirts like the primary girls do. But even though I often don't understand half of the text, I would say that it's probably an understatement to say that I'm addicted. Along with the encyclopaedia of the human body, it is fast becoming my evening reading matter of choice. This is not a revelation that I can admit to being proud of, but I guess you could argue that it beats reading Heat magazine any day.

So a few days ago, I casually strolled along Harley Street marvelling at the size and grandeur of the buildings and wondering how on earth I could ever find a way (short of winning the lottery) of residing at a W1 postcode. I found the waiting room a little disappointing in its blandness since I was almost expecting to be served tea and sandwiches in quaint ye olde english crockery, but was soon signed in and waiting to see the consultant. I'd been referred to her to see if there was a way in which I might need radiotherapy. I figured the answer might well be no since I'd had such extensive surgery and the chemo had worked really well. But since I don't like to leave anything uncovered, my oncologist had agreed to refer me, probably more to put my mind at rest than anything else.

Isn't it amazing how much more relaxed consultants look when they're in their private rooms away from the frenzy of the full-to-the-brim waiting rooms and the stressed-out looking NHS nurses ? And so it was for this consultant. She remembered me from before, asked me to recount my recurrence and everything that had gone on since then and then promptly told me that she didn't think I'd need radiotherapy. Agreed, perhaps this could have been a quickie phone-call received in the comfort of my own home instead of a traipse into town during midday, but since I was there, I seized the opportunity to cross-examine her about my condition, just in case there might be any difference in opinion to the one given to me by my usual onc. I showed her the second opinion report from the eminent US prof and she smiled when she read it and said that she thought I'd made the right decision having the op - despite him saying that it would only have limited benefit. Her reasoning ? I'm unusual (as usual) in that I shouldn't really have had a recurrence - statistically speaking. And because of this there aren't really any statistics for someone like me who was probably always HER2 positive from the outset but only had a recurrence seven years later. I've also got oligometastatic disease (low burden disease) which is another unusual thing and the chemo blew the tumour on my sternum clean away - which is also unusual. All in all, this combination should be a good thing but as I told her in between my 'Question Time' style cross-examining, I sometimes found it hard to be optimistic. One look at baby A was all it took to fast forward myself into the future where I sometimes found it even harder to see myself there too. She was sympathetic and said all the right things but I guess at the end of the day (to use a much-loved, over-used football-manager's cliche) no doctor can ever give you that 'all-clear' that we all hope for one day. Still, I made the most of my day in town, although it was strange how I went shopping for some pre-holiday dresses and came back with only a potty.

Strange how motherhood creeps up on you, ain't it ??

Friday, 26 August 2011

A Stitch In Time...

Well, two posts down, only countless dozens to go. I really must be on a roll. What can I attribute this frenzied return to blogging to ?  It can't be the mid-afternoon fatigue that I often feel around this time when the thought of doing anything other than being tucked up in bed and surfing the net fills me with well, more thoughts of tiredness. Nor can it be down to the end-of-the-summer-that-never-happened-blues that I feel when I look out of the window and see that it's raining. Again. I sometimes think that had I been a smarter, more adventurous type of gal when I was in my twenties or even thirties, I might now be sashaying along some sun-kissed Mediterranean malecon at this time of day, before retiring for a siesta in my villa overlooking the sea. Instead of this, I'm living in an overpopulated city, often battling with the wind and the rain with an umbrella that refuses to open. But enough of daydreams. I chose London for my sins and in doing so, I also opted for the Great British Weather.

Anyway, time for a catch-up.

Like I said in a recent post, a lot of things have happened since I last spoke to you. Firstly, my stoma bag (or colostomy bag, depending on which part of the body you've decided to wear it on) is gone, and hopefully gone forever. My surgeon, having returned from his holiday, called a few shots and before I knew it, I was out of drainage and into dressings again. I have to admit that after being passed from pillar to post during his absence, I've never been so happy to welcome the return of a doctor. On his return he examined my wound, after giving it an extra week in case it felt like draining some more. When it didn't, he told me that he'd have to re-do the lower part of the wound to make it look better and get rid of some of the bulging bits that had formed during drainage. Formally it's called an exploratory-something or ever (apologies for the lack of detail but I tend to zone out sometimes when I hear words that contain more than four syllables...). I would be back in hospital and back in the operating theatre but this time for only an hour at most. I'd be given a local anaesthetic which might make me feel a bit woozy but beyond that I'd be up and about in no time.


Ever since my sternectomy, I've been trying not to feel too bad about the scar that runs right down the centre of my chest. And I guess it makes sense not to. After all, if there were a competition that judged beauty on the number of war wounds a woman can possess in her lifetime, I think there would really be no contest. I would be a clear winner, hands down. Not content with having a mastectomy scar as well as a scar on my back where the muscle was taken for my latissimus dorsi reconstruction, I have the recent acquisition of a caesarean scar and now the macho addition of a scar that begins in between my breasts and ends just above my stomach (yes, it feels very macho to me - forgive me if I'm wrong but isn't it always the tough guy in the movies who seems to undergo major heart surgery ?). When I look at myself in the mirror I can honestly say that I don't know which one to look at first. With my mind being the eternal daydreamer that it is, I often wonder what would happen if me and my partner split up ?  If I suddenly found myself back on the dating circuit ? How would I handle having to take off my clothes for the first time in front of a perfect stranger ? And what would the outcome be ? Would the gentleman in question stick around long enough to hear a full-blown account of my medical history or would I find myself stammering a confession over dinner while trying to reassure him that I still look kind of okay in a bikini, depending on the hour of the day - preferably after the sun sets.

But back to the matter in hand. On the day of my exploration, I felt so self-assured that I turned down the offer made by my mother to accompany me to the hospital. I kissed my partner goodbye and told him not to bother picking me up, I'd jump on the train after having a spot of dinner there. My mother thought that I was mad. A few stitches was all I was having, I breezily informed her. And with that I skipped off to the station.

How wrong was I ?

Firstly, when I arrived at the hospital, on the same ward that I had been originally put for the sternectomy, no-one had seemed to tell the nurses that I was back in for a 'minor' procedure. So they imagined, I guess, that I'd had a recurrence. They looked at me with sympathy in their eyes. 'No, it's just a minor procedure,' I corrected them in between confident smiles. I wanted to show them how well I looked, how fit I was, but it's hard to achieve this when you're wearing nothing but a blue felt hospital gown and terry towelling slippers. Then in came my physiotherapist.

'Hi there, don't forget to do the exercises after surgery', she warned me. 'Remember to take deep breaths to inflate the lungs.'

Eh ?  Deep breaths ? Lungs ? Did she know something that I didn't ?

By the time my surgeon appeared, I was on the edge of my bed. I'd signed consenting forms and had my wristbands put on me and I was about to go down to theatre. There didn't seem to be anything minor about this operation at all.

I asked him about the anaesthetic. 'It will make you sleepy, but you'll still be able to hear my voice. But if it feels uncomfortable for you, then we'll have to give you a general anaesthetic'.

By now, I was beginning to feel more worried about the local than the general. What if it was really painful ? I remembered the tugging feeling that I'd felt when I had had my caesarean which had been under a local epidural. I'd been terrified about feeling pain and the feeling of discomfort still sticks in my mind. Soon, a porter came for me and we took the lift down to the operating theatre where the team were waiting. I went through the all-too-familiar procedure of having the canula inserted, confirming my name and date of birth, and checks to make sure that I wasn't allergic to anything. I was wheeled into the room where I saw my surgeon again. The familiarity of his friendly face was reassuring. The anaesthetist told me that he was about to give me the local, soon I'd feel sleepy but awake. I was given an oxygen mask. I'd also feel a stinging pain in my arm after the anaesthetic went in. The pain was again all-too-familiar, that burning sensation that I couldn't ignore. At times it felt unbearable and I turned my head to the side away from the surgeon.

When I opened my eyes, there was nurse sitting at my side.

'Hi, You've just woken up. We had to give you a general anaesthetic as you wouldn't stop moving around. Then your blood pressure fell and your heart rate slowed down. But you're okay now'.

I didn't feel ok. I felt like I'd just done a few rounds with Mike Tyson.

I was wheeled back to my room where I drank water and slept. When I woke up there was a knock on my door. It was my surgeon.

'What happened ?' I asked him.

We couldn't keep you on the local as you kept kicking your legs and moving around. I kept asking you if you were okay and you'd say yes, then start kicking again. So we gave you a general.'

'But my blood pressure was low, wasn't it ?'  I remembered the words of the nurse.

'You're very sensitive to opiates.' he explained 'But I knew this from before. As soon as we gave you a general, your blood pressure plummeted. But you're fine now. Is anyone coming to pick you up ? I think  you should call someone.'

So, after a late, late lunch (nil by mouth since midnight), I was picked up by my family and soon at home with further dressings. Nothing as dramatic as in previous posts but at least things are now moving in the right direction. Once the dressings are off and the stitches removed, we can hopefully book a holiday to that place that I've been dreaming about. The one that has a beach, long, hot summery days and a room with a view. Oh and maybe a complimentary full-time nanny. But failing that, an all-day creche will do for now.

The Post-Chemo Cut

Okay, let's talk about hair. Namely my own (tee-hee). One of the beauties of having your own blog is that it can unashamedly be all about you - no sub-editors to slash your over-indulgent sentences and no critics lurking in the background telling you to get over yourself. So, the last time I mentioned my hair on this blog, I was about to pay a visit to a non-black hairdresser to get my wavy-straight post-chemo hair cut into shape. Well, this took place exactly three weeks ago and while the experience was interesting while it lasted, my hair now looks entirely different. My waves are fast curling over; the blacks are now fighting for space amongst the post-chemo silver-greys. My hair, while still straightish, is growing outwards and I am beginning to resemble my old pre-chemo self once more. The look is less cutting-edge, more college professor. In other words, there ain't no real style to play with. I know that if I get it cut again, it will look better. But if I try to grow it longer, there's a chance that I might get my old Afro back sooner rather than later. What to do? Who really knows? But while I'm still deciding, let's take a trip down memory lane...

So my post-chemo haircut was such an eventful day for me that I decided to invite the whole family. Not only did baby A and my partner accompany me on this historic day, but my mother who had been installed in the house on and off ever since I first had my first chemo hit, was dragged along for the ride too. My partner had phoned ahead to explain my predicament and so when I walked into the empty salon and met the two male Thai hairdressers whose own hair textures had absolutely no resemblance to my own, they didn't stop dead in their tracks or point me in the direction of the local Afro-Caribbean barbershop. As soon as I walked in, I explained my story. I told them about the chemo, my hair loss and the change in texture that had occurred since the regrowth. One of the hairdressers, a petite-looking Thai man with a shaved head looked at my hair in wonder. 'So it's come back straight now?' he asked. 

‘Not really straight’, I explained. ‘There are curls breaking through.’ 

'Well, it's not really curls,’ he explained, on closer examination. ‘It's more wavy. It looks more like mixed-race hair.’ 

He beckoned me to sit down and put a gown around me. I stared into the mirror and saw someone unrecognisable staring back at me. My hair was truly wavier and greyer than it had ever been. Even though I had not set foot into a salon for the last five years, I remembered the feeling of tension that I often felt when I sat in the hairdresser's chair and tried to explain to the stylist want I wanted. I was so used to styling my own hair, it was often hard to let go. I was always convinced that no one else would give my hair the tender loving care that I did - and I was often right in thinking so. 

The Thai hairdresser continued to look at my hair in wonder. 

'Yes, I can cut this', he said to me after a while. ‘Anyway, short hair suits you. You have a good head shape' - he pointed to the rounded shape at the back of my head. 'My head shape is flat at the back - see?' 

I noticed that the back of his head was much less curved than mine, and that he was bald on top - hence the shaved head. 'It's not so good for me'

He took a fine comb and a pair of petite looking scissors from a stand to the right of me. I asked him whether he had ever cut Afro hair before.

‘No!' he said emphatically. 'I can't cut Afro hair. Afro hair is special hair. You need experience and a different technique. Lots of black people come into this salon and ask me to cut their hair but I tell them I can’t. I don’t have the skills. Even when you use clippers on Afro hair, you have to hold them in a different way.'

I nodded. It made sense to me and at least he was honest. Although I was always taught that the only real difference between Afro hair and Caucasian hair is the amount of curl or ‘kink’ in the hair. Afro hair follicles are shaped differently, that is true – but this only affects the texture of the hair, which in turn affects its porosity (how much moisture each strand can absorb – afro hair tends to be much more porous than Caucasian hair and more fragile to breakage because of its irregular curl pattern.

‘You know once’ he confided in me, 'someone asked me to wash Afro hair. I tried but the water just ran off the hair, I couldn't believe it !’ 
I smiled. His remark reminded me of some of the questions that my white school friends used to ask me about my hair, ‘How do you wash it? How do you dry it? Is it true that it shrinks? I always found these questions strange. To me, my hair was as normal as they come. It was everyone else’s hair that was weird to me.

‘Anyway’, he said smiling as he began to comb and clip the ends of my hair. ‘Why don’t you keep your hair like this? Now you have hair that everyone can cut!’

This time I laughed. I explained that my current hair was only temporary. I was expecting to welcome my Afro back some time soon in the future. In the meantime I was just trying to get to grips with my new hair.

He continued talking and cutting, combing and cutting, often pausing to check the length and evenness on each side. We chatted away about living in London, life in Thailand, current trends in hair in Asia – (apparently Japanese youth love ‘distressed’ hair) and post-chemo hair. I was surprised that my hair wasn’t shampooed and blow-dried beforehand, as it is always done in an Afro hair salon. He warned me that post-chemo hair is very delicate. I shouldn’t do anything drastic to it for a long while. When I mentioned the fact that I was thinking of dyeing it soon, he looked at me in horror. 

‘No! It’s too fragile! Anyway, why? Grey hair suits you. There are lots of people who would pay good money to get this type of shade’.

Ok. So now I was flattered, now I would tip and now I would almost definitely come back for another cut. What a great hairdresser I’d found! But that’s cynical me talking. I’m sure he was for real. By the time he’d finished, I was back to my post-chemo pixie self. I looked tidy again. He’d given me a damn good cut. Even my mum (who is often my biggest critic – in the way only mothers can be) was impressed. We took a few pictures for good measure and left the salon. I realized that this was the first time that I’d had my hair cut dry and with a pair of scissors and without the use of clippers, gels, sprays or oils. It had been a brand new experience and one that I’ll probably never experience again.

Who says that life doesn’t begin at 40?

p.s. just in case you're wondering about the link between the girls in the picture and this post ? - well, there isn't one. I just really like the painting. And the girl's hair on the right reminds me of my last wig. The painting's a finalist in the National Portrait Gallery's current competition. Think I'll check it out the exhibition next week...