Sunday, 18 December 2011
Thursday, 8 December 2011
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
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
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...
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
Sunday, 30 October 2011
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
(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
Tuesday, 27 September 2011
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
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
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
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.
Sunday, 28 August 2011
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
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.
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...
'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'
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.
‘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’.