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...