my search for the perfect afro wig (and other random thoughts) while undergoing breast cancer treatment...
Sunday, 23 December 2012
Season's Greetings !
Not much time to write a real post with me currently awaiting a lift from my cousin to see my folks in Bristol and all... but just wanted to wish each and everyone of you a very Merry Xmas. Thanks for stopping by my blog this year whether it's your first time or you're a regular reader. Writing during treatment has been extremely therapeutic for me and I hope that some of the information and opinions that I throw out there have helped in some way. My big tips for 2013 are Vitamin D, Vitamin D and even more Vitamin D - but more about that later on. If you've been newly diagnosed with cancer, after your friends and family, the second most important thing to have in your life is Hope. And lots of yummy dark chocolate...
2013 is a brand new year and I hope that it will be a better one for all of us.
Peace and Love,
Cx
Tuesday, 11 December 2012
Not Waving, But Drowning...
Apologies for being away for so long. Remembering to update this blog has most certainly been on my mind. But, like my desire for time travel and tele-transportation, I have not yet found a way of extending a 24 hour day into a 48 one. I'm learning that 'having it all' (which I secretly think is just another way of society making women feel as though they can actually juggle work and childcare without heading for a nervous breakdown) really is possible - just as long as you don't mind missing a substantial chunk of that precious commodity called sleep every now and again.
So where do I start ? Well, the good news (and I'm pleased to report that at this very moment in time I'm able to use this word generously) is that my last scan result showed 'no significant change', which I'm told is not just a good thing, but a great one. OK, so things might still be a little complicated between Ned and I but the radiotherapy that I reluctantly signed up for a few months back seems to have worked, there are no other areas of concern so, at least for another three months, I really should be throwing backflips and enjoying the result while I still can. And I guess I did in a less physical way which involved copious amounts of red wine and cake with lots of sugary icing on the top. But the problem is, even though my body hasn't found a way of transporting my good self into the future, my mind certainly has. Even though I really should be 'living in the moment' and rejoicing in my good fortune, however long it may last, I find myself instead feeling more concerned about when it might end. So even though I haven't quite made it back to my meditation classes just yet, a dose of the old mindfulness might just be what the Yogi ordered.
But there's also another reason for me being strangely absent for so long. Unfortunately I have heard in the last two months two lots of bad news. Two deaths have happened since I last booked in, two deaths of two women; two mothers who had the same disease as me. I knew neither that well but enough to feel a wave of sadness, anxiety and guilt all at the same time. Both women looked 'so well' when I last saw them. So well that I had no idea that it would be the last conversation that we'd ever have when I spoke to them. And for this I feel guilty that I've spent so long feeling pre-occupied with my own thoughts and fears that I missed the chance to help someone else. I also learned how easy it is to simultaneously feel sadness and selfishness (will I be next ?). Yes I may have grieved for both women on those days but if I dig deep within that grief, I'm sure that I'll find myself somewhere, hoping and praying that I won't be next.
A few posts back, I talked about the experience of metastatic breast cancer feeling more like hurdles than a marathon. Only what I failed to realise is that the bar keeps getting higher. Just as you've cleared one hurdle and you're running on solid ground once more, enjoying the wind in your air, the feeling of freedom, seeing your friends and family smiling at you in the audience, you're faced with another hurdle, a higher one this time, and once again you wonder how you might ever clear the bar without touching it, or falling over. But you can't stop because they won't let you. You must keep running, even though you may be tired and angry and bored of having to stay on that track and clear that next bar. Because the funny thing is, even though you might look like the finest endurance athlete while you're out there running and jumping for your life, you know that the reality is, you really have no other choice.
So where do I start ? Well, the good news (and I'm pleased to report that at this very moment in time I'm able to use this word generously) is that my last scan result showed 'no significant change', which I'm told is not just a good thing, but a great one. OK, so things might still be a little complicated between Ned and I but the radiotherapy that I reluctantly signed up for a few months back seems to have worked, there are no other areas of concern so, at least for another three months, I really should be throwing backflips and enjoying the result while I still can. And I guess I did in a less physical way which involved copious amounts of red wine and cake with lots of sugary icing on the top. But the problem is, even though my body hasn't found a way of transporting my good self into the future, my mind certainly has. Even though I really should be 'living in the moment' and rejoicing in my good fortune, however long it may last, I find myself instead feeling more concerned about when it might end. So even though I haven't quite made it back to my meditation classes just yet, a dose of the old mindfulness might just be what the Yogi ordered.
But there's also another reason for me being strangely absent for so long. Unfortunately I have heard in the last two months two lots of bad news. Two deaths have happened since I last booked in, two deaths of two women; two mothers who had the same disease as me. I knew neither that well but enough to feel a wave of sadness, anxiety and guilt all at the same time. Both women looked 'so well' when I last saw them. So well that I had no idea that it would be the last conversation that we'd ever have when I spoke to them. And for this I feel guilty that I've spent so long feeling pre-occupied with my own thoughts and fears that I missed the chance to help someone else. I also learned how easy it is to simultaneously feel sadness and selfishness (will I be next ?). Yes I may have grieved for both women on those days but if I dig deep within that grief, I'm sure that I'll find myself somewhere, hoping and praying that I won't be next.
A few posts back, I talked about the experience of metastatic breast cancer feeling more like hurdles than a marathon. Only what I failed to realise is that the bar keeps getting higher. Just as you've cleared one hurdle and you're running on solid ground once more, enjoying the wind in your air, the feeling of freedom, seeing your friends and family smiling at you in the audience, you're faced with another hurdle, a higher one this time, and once again you wonder how you might ever clear the bar without touching it, or falling over. But you can't stop because they won't let you. You must keep running, even though you may be tired and angry and bored of having to stay on that track and clear that next bar. Because the funny thing is, even though you might look like the finest endurance athlete while you're out there running and jumping for your life, you know that the reality is, you really have no other choice.
Thursday, 18 October 2012
The C-Factor...
But if I'm not talking about cancer I hear your subconscious mentally pondering, what's the point of my posting to this blog ? Well, don't forget that I only started this blog because I couldn't find a decent wig and thought that by spreading the word that there was a shortage of realistic afro wigs in London, some kind soul might take pity on me and donate one. But since then, I've moved on. Firstly (and I never thought I'd reach the day when I would ever say this) I'm not that bothered about finding a wig any longer, not because I don't miss my 'I'll curl-any-which-way-I-feel-like curls, but I guess after a year and a half of having a closely cropped barely there hairstyle, I realise that I actually prefer it. It fits perfectly with my new post-baby life; the one where I never have more than five minutes to myself on a daily basis. It also looks like I chose it rather than 'it' chose me, which was obviously not the case. In a nutshell, it's low maintenance even when I'm close to having a high maintenance moment (usually induced by work, toddler, cancer treatment or a combination of all three) and judging by the comments I've received from friends, colleagues and even complete strangers - it suits me. So while for the second time I'm uttering something that I never ever thought I'd say - thank you chemo chemicals, for giving me a hairstyle that works without me having to 'work it'. If I hadn't had to sample your deadly cocktail of toxicity, I never would have had the courage to shave my head. I also would never have realised how cheap it is to get my head shaved - £7 at my local barber's !!! So for that, and for that only - I salute you. But this is where the accolade ends. Let's not forget what havoc you wreaked on my nails, skin and tastebuds. Because I certainly never will.
But before I go, not wanting to disappoint the cancer crowd out there, here's a quick catch-up of my bout with the big C. At this moment in time, after three weeks of radiotherapy (and a lovely break in Mallorca), I've just started my three monthly injections of zoladex; a hormone treatment that acts by shutting down my ovaries with the hope of starving the cancer cells of oestrogen. In a month's time I'll add the oral tablet letrozole which does a similar thing, but in a different way (told you I was only an amateur pro, if you need a more detailed description, I'll give you the number of my onc). Psychologically speaking, I feel ok. Apart from a bit of a meltdown which involved a slightly aggressive cross-examination of a young doctor I spoke to at my last appointment (I've not quite managed to get over the fact that a more belt-and-braces approach to my cancer the first time around, might well have avoided my current incurable diagnosis), I'm actually doing alright. Since there are only so many hours in the day, the meditation classes have unfortunately been put on hold. But if there's one lesson that I've taken from my brief flirtation with mindfulness it's this; every night before I enter that impenetrable world of slumber, I think of all the beautiful moments that I've experienced that day. It could be a brief spell of sunshine, a funny or interesting conversation, a lovely walk through an area that I rarely visit, or a delicious meal that I've had the pleasure of eating. It's called gratitude - feeling grateful for the little things that happen instead of worrying about the big things that might. Easier said than done I admit, and for an old cynic like me, it often involves me ignoring the more rational part of my mind. But so far I'm pleasantly surprised to say, I fall asleep much easier than I used to. So far it seems to be working.
Wednesday, 3 October 2012
Toxic Shock Syndrome...
Because you see, throughout most of August when most of you were enjoying the warm rays of summer sun, I have woken up at the crack of dawn, hauled my heavy, sleep saturated body into the shower and left the house at the speed of a doormouse. I have travelled to Harley Street, where I have got myself half-undressed, lain on an uncomfortable steel-framed bed and allowed radiation rays, better known as photons, to course their way through my body. I have then hauled myself up, still bleary-eyed to work, to sit in front of a computer all day and drink cappuccino. And to top it all, as much as I try to view radiation, you know that radioactive matter that people run away from during an atomic explosion or fall-out (see Japanese Tsunami in Wikipedia for more info) as curative, I am a child of the seventies. Radiation to me translates to CND (Campaign for Nuclear Disarmament for all you 20-somethings who missed this fine period of political history), it translates to Greenham Common women; long, flaxen-haired white women being forcibly carried out of fields by the Police, and lots and lots of t-shirts with that peace symbol. It never did, and certainly doesn't now, ever make me think of radiation as a 'treatment' as the doctors call it. But at the same time, I guess I should be grateful that there is still something to offer me.
But let's not get maudlin. After three swift ones (weeks I mean, not units of alcohol), I decided to treat myself and partner and toddler A to a trip to Mallorca, that most beautiful island in the Mediterranean. I had imagined myself for weeks sat in the sunshine with only a cocktail to distract me, watching the sun sparkle on the crystalline waters of the Mediterranean sea... I even brought along that book. Yes, that one. All fifty shades of it, as a way of raising two (or three depending on your sexual preferences) fingers to cancer as if to say, 'yes I still have a sex life you bastard, even if I'm a boob and sternum lighter as a result of your 'dropping in' on me'. Instead what I got was a trip with a toddler who suddenly learned how to throw the most hummungus of tantrums. Not just the odd cry and sniffle that I saw in his more well-behaved German counterparts. No, these ones demanded that we be in a public place, somewhere like a quiet, crowded restaurant was ideal. And they usually came around the time of 'la hora de comer' - or in plain english; lunchtime. Not the most relaxing way to enjoy your holiday but you know what they say, 'patience is a virtue'. And once you've spent the last two years on and off chemo, waiting desperately for the time when you won't have to take a medicine shelf full of drugs again, being able to wait patiently for your toddler to finish his excrutiatingly embarassing toddler tantrum so that you can carry on sipping red wine and eating olives on the terrace, suddenly begins to feel very tolerable indeed...
Thursday, 16 August 2012
Waiting To Exhale...
Maybe I need to begin with the here and now. Because right here and right now, my dear, dear reader, I am currently taking a journey back into Cancerland once more. My destination is unknown but I'm hoping that it won't be a one-way ticket just yet. A recent scan showed a new tumour (or as one of my oncs likes to politely and eloquently put it, 'an increased uptake in one of the mammary nodes', so it's no more capecitabine and lapatinib - two low-key drugs that I thought I could be on for a very long time. It's hello
But it is as it is. And after shedding a few tears and entering some very dark places over the last week where I contemplated not just my own demise but the effect that me not being around would have on my family, most of all my very young son, I picked myself up, brushed myself off, put the fighting gloves back on, and decided to enrol in... some meditation classes.
Why meditation ? Well, I've tried everything else - the juices, the turmeric, the acupuncture, the aspirin, the fruit and veg, the chinese mushrooms. I've done my oncology homework and have read up on the treatments on offer. I've tried yoga, pilates and running. I've done the rational and the physical but not the spiritual. And the truth is, I'm stressed. So this week, after wisely booking a week off from work, I try out two classes at the local Buddhist centre. The location is a beautiful old church and once you're inside it feels like you're a million miles away from the busyness of London life. The classes are held by a buddhist couple and we are taught how to listen to our breathing and relax our bodies. It sounds like easy stuff but as everyone who's ever tried it knows, it's damn hard to empty your mind when you're constantly being bombarded with niggling thoughts and worries. I try and it works for a short time, but I find myself thinking of that lovely pair of shoes that I very nearly bought when I should be relaxing my toes and heels. When we're told to focus our minds on our stomachs, I start to think of the ingredients of the stir-fry that I'll be tucking into later that evening. Perhaps I'm just too practical to ever be a master of meditation but what I do discover, on returning home, is the effortlessness that I fall into a deep sleep once I'm in bed and my head hits the pillow. I continue concentrating on the breath and only thinking in the present. And do you know what ? It actually works. I use the same approach when I'm lying on the radiotherapy bed waiting for the machine to zap me with photons. I'm told not to move and I almost fall asleep. So, even though unlimited amounts of meditation is very unlikely to cure me, I'm hoping that it will make my everyday life a bit easier to cope with. And it's a damn sight cheaper than a pair of Kurt Geiger shoes.
Wednesday, 27 June 2012
Back To Life, Back To Reality...
Wow. Has it really been that long ? Over two months since I last posted ? Time does indeed fly, even when you're not altogether having fun. Don't worry, I'm not about to launch into a one woman diatribe about the difficulties of being a cancer victim patient. I haven't been absent due to any said state of depression or debilitating illness. I have just been very, very busy. Busy trying to be a model employee, busy with looking after an active toddler and busy, busy, busy trying to remember and co-ordinate my very many hospital appointments in the midst of this. So what have I been up to while I've been away ? Well firstly, there was the interview with my oncologist for a newspaper piece about the general state of the NHS, where I discovered that oncology (that being the field of cancer medicine) is very well protected (in that it affects so many of us). Then there was a very recent trip to Madrid to attend a photo-festival where I spent the night before the flight in an A& E department having more and more tests to make sure that I didn't have a life-threatening infection. In between these times there were tablets, and more tablets, a few bouts of the runny ones and lots of sleep-interrupted nights while toddler A got to grips with the many coughs and colds that he forever seems to pick up at his day nursery. And swiftly pass on to me.
Back in the days when I was a full-time, fully paid-up member of Cancerland, time took on a different meaning. I would sit at home, planning my schedule around a very needy baby wondering how well the rest of the world was coping without my presence. Now that I'm a fully fledged member of that world that I so desperately missed, my time seems to be no longer my own. My regular cycles of capecitabine and lapatinib are squeezed into an already demanding diary of events which includes a constant organisation of photo-shoots and deadlines and the effort to rebuild a social life. In between these times I spend my time worrying whether Toddler A is wearing enough clothes to nursery, whether he's warm enough ? is he too cold, is he too ill to be at nursery ? Should I be working when I have such a young child to look after ? Should I be working when I have cancer ? And on and on it goes until some other distracting thought comes along and shoves these parasites out of the way...
Despite the uncertainty of this shitty disease, I find myself more often than not imagining the future. When I'm feeling okay (and not experiencing the waves of fatigue which often plague me towards the end of my capecitabine cycle) I like to imagine that I still do have a future. One where I'm fit and healthy and ready to take on the world. One where I've recovered and am now better, not a woman with a chronic illness. One where I can imagine standing at my son's wedding wondering whether he's married the right girl. One where I'm me again, before the cancer, before the operation, before the drugs, and before the uncertainty. I'm happy to be back in the real world. Although it no longer has the reality that it once did and I find myself caring much less about what people really think of me, which I guess can only be a good thing. Shame I didn't have this dose of cancer-induced confidence to see me through my teenage years and beyond, but hey. On that note, I'll bid you farewell and hope that this sudden surge of energy will bring me back to this blog again soon. And next time I promise I won't leave it so long...
Back in the days when I was a full-time, fully paid-up member of Cancerland, time took on a different meaning. I would sit at home, planning my schedule around a very needy baby wondering how well the rest of the world was coping without my presence. Now that I'm a fully fledged member of that world that I so desperately missed, my time seems to be no longer my own. My regular cycles of capecitabine and lapatinib are squeezed into an already demanding diary of events which includes a constant organisation of photo-shoots and deadlines and the effort to rebuild a social life. In between these times I spend my time worrying whether Toddler A is wearing enough clothes to nursery, whether he's warm enough ? is he too cold, is he too ill to be at nursery ? Should I be working when I have such a young child to look after ? Should I be working when I have cancer ? And on and on it goes until some other distracting thought comes along and shoves these parasites out of the way...
Despite the uncertainty of this shitty disease, I find myself more often than not imagining the future. When I'm feeling okay (and not experiencing the waves of fatigue which often plague me towards the end of my capecitabine cycle) I like to imagine that I still do have a future. One where I'm fit and healthy and ready to take on the world. One where I've recovered and am now better, not a woman with a chronic illness. One where I can imagine standing at my son's wedding wondering whether he's married the right girl. One where I'm me again, before the cancer, before the operation, before the drugs, and before the uncertainty. I'm happy to be back in the real world. Although it no longer has the reality that it once did and I find myself caring much less about what people really think of me, which I guess can only be a good thing. Shame I didn't have this dose of cancer-induced confidence to see me through my teenage years and beyond, but hey. On that note, I'll bid you farewell and hope that this sudden surge of energy will bring me back to this blog again soon. And next time I promise I won't leave it so long...
Thursday, 26 April 2012
Scanxiety II - Getting Back Into The Game
But I digress. Despite the overly simplistic 'I was sick and now I'm cured' tone, the good thing about the programme was the attitude of the patients at the Marsden Hospital. Some looked so relaxed that you'd have thought they were waiting for cough mixture. Even though everyone talked about how nerve-racking it was to await scan results, most of them seem to accept their condition with grace. None of them looked like me. They didn't have the anxious, drained, paranoid expression that seems to accompany me before, during and after each Pet/CT scan. They didn't look as if they experienced the nightmare 'what if' scenarios that assemble in my mind in the early hours of the morn when most of you are still sleeping. Instead of making me feel inadequate, I felt inspired by their dignity and vowed that on the day when I arrived at the hospital to hear news of my fate, that I too would have the courage to keep my composure.
But hey, this is real life and this is me that we're talking about. Unfortunately, I don't do dignified. Unfortunately, I just don't have the patience. As soon as I saw one of my team of doctors appear after only 5 minutes of me waiting (why did she appear so quickly ?) after the very brief how do you do's, I began to cross-examine her. 'Had she received my results ? what were they like ? why not ?' I have to admit that I barely gave the woman time to return to her consulting room before I began firing questions at her like a prosecutor in court. She actually had no idea and went off to investigate further. Returning with a piece of paper, we went through the results. As she read out the findings to me, I realised that she may as well have been speaking a foreign language. There were lots of references to uptakes and FDAs ??? and non-Fdas and suchlike. So much so, that by the end, I was no wiser. Had my cancer returned ? was there no change or had my body improved ? She told me that it was a good result. My own consultant had just confirmed this, she said. I guess I was expecting to see a piece of paper with just four words written in the middle: 'NO EVIDENCE OF DISEASE'.
But, she reassured me that the scan was good. And while I sat outside waiting for a blood test, I was relieved to see my consultant walking down the corridor who also confirmed that the results were indeed good. There had been no significant changes, and as she was grinning from ear to ear while she said this which I can only take to interpret that to mean that it must be good news. So it seems as though once again I live to fight another day. To be honest, I'm still not sure whether there is cancer in my body or not after reading those results, but if they're good enough for my doc, then they're good enough for me too. As I left the hospital, both smiling and shaken at the same time, I thought about a quote that I'd seen in a newspaper article about metastatic breast cancer. One woman described her primary diagnosis as a 'sprint' and her secondaries as a 'marathon'. But I disagree. To me, it's like hurdles. You jump over one, freestyle your way through life again and no sooner do things get back into rhythm, there's another hurdle waiting for you once more. But on that day - the day of my scan results, I made a toast to Life in all its weird, wonderful, worrisome, scary and surprising guises. I bought some red wine, coffee and teacakes to celebrate (bang goes my caffeine-free, sugar-free, alcohol-free diet again...) my leaping over another hurdle in my never-ending race to stay ahead of the game.
Sunday, 8 April 2012
Ten Bad Foods That Are Good For You...
As is so often the case with bouts of inspiration, the frequency of my posts at the moment can be compared to waiting for a bus. You wait for ages for one to turn up, and when it finally appears, you get all three at the same time. I'm able to go for weeks without finding a reason to blog, and then when I finally drag my arse onto a chair and decide to start writing, I find that I can't stop. Nothing wrong with this I hear you say, I just wish inspiration came to me more like the slow, steady drip of a tap rather than the staccato gush of a shower that's been blocked up for months. Anyway, what's most important is not that I seem to be afflicted with occasional bouts of verbal diarrohea, but the fact that I'm trying to keep this blog up-to-date.
So while I have the energy, enthusiasm and good intention, how about another easy-on-the-brain top ten ?
Since I've spent the last couple of posts harping on about the virtues of a fat-free, sugar-less spartan diet, I think a list of bad foods that are actually good for you is a good place to start. I'm not sure I've got enough material for a full-blown top ten, but here goes...
1. Red Wine
Where would we breast cancer ladies (and men) be without this holy grail of alcoholic drinks to fall back on when times get tough ? The great thing about reading about the abundance of antioxidants in red wine is that no-one ever really tells you how much is enough. One glass or two ? Or maybe half a bottle will do ? It seems as though we have a group of chemicals - namely polyphenols to thank for this guilt-free drinking. 'Moderate' drinking of the red stuff seems to guard against heart disease, cancer and a host of other chronic illnesses. Cabernet Sauvignon seems to be the grape of choice, but let's face it ladies, when you're at home suffering from your latest scanxiety attack, forget about the small print, any old bottle of red will do.
2. Chocolate
Despite the fact that I spent my early formative years living opposite a sweet shop run by a woman so generous in girth that we affectionately nicknamed her 'fatso', I never really acquired a taste for the sweet stuff. On a good day, I'll always choose a savoury pasty over a sweet pastry. But since my journey into Cancerland, I've had time to reconsider. Dark chocolate (over 70% cocoa) is Mother Nature's way of giving us cancer patients a choco fix without having a guilty conscience afterwards. A medley of cancer-fighting antioxidants is the reasoning behind this. So a few squares a day can really keep the doctor away.
3. A Takeaway Curry from your local Indian Restaurant
O.k. I know I'm stretching it a bit on this one. Current research suggests that having a spoonful of not-so-tasty turmeric (the stuff that gives curries their characteristic yellow/orange colour) every day could halt the spread of breast cancer cells. Turmeric is poorly absorbed by the body so needs the presence of olive oil and black pepper to help things along. Here's where your favourite friday night takeaway comes in. Forget about the fat-laden ghee, the even fattier coconut milk, curry contains turmeric. Turmeric fights cancer. End of story. Now pass the Vindaloo.
4. Semen
Sorry, wishful thinking. Next !
5. Burger and Chips
Here's where I get creative. Don't think about that quarter pounder big mac with fries and mayo. Think of the wholesome veggie bean burger that you normally only chow down on at a hippie music festival or when there's no other choice around. Now add some leafy greens, a generous spoonful of hummus, a slice of tomato and a bit of avocado. Substitute the nasty ole regenerated potato chips for roasted sweet potato wedges... and congratulations ! You've just completed your five-a-day portions of fruit and veg. You still get to feast on a burger bun only you won't feel half as stuffed and soporific once you've finished eating and your body will be singing your praises until well, the next lot of sweet potato fries.
So there you go. Not the top ten that I'd originally hoped for but hey, it's Easter and I'm mentally on holiday. If you can think of any others, feel free to add to the list. And Happy Easter folks!
Thursday, 5 April 2012
28 Days Later...
Yikes. Has it really been almost a month since I last dropped by? In my new triple-layered journey of a life which passes through the 9-5, Todderville and Cancerland, I seem to have used up another batch of 28 days. Oh well.
So much for my last virtuous post in which I informed you all of my abstinence from all things rich, fatty and full of taste. It seems as though returning to work has not only revived my bank balance - it has also ignited my taste for all things sweet. Despite my good intentions, I have to confess, that since I last spoke to you, I have managed to partake of a bag of Liquorice Allsorts, a burger and chips, questionable amounts of red wine and cake. Yes, you heard me. Cake ! And I have no excuse. My birthday is well and truly long gone. I've not even been eating the wholesome and clean-living carrot kind of cake but fat, greasy, trans-fat slabs of victoria sponge and chocolate brownie. It seems as though when surrounded by my friends at work, I momentarily forget about those oestrogen-loving cancer cells. I pretend that they're currently away on holiday and living it up in Lanzarote or somewhere and that they won't really notice if I pop a mouthful of butter-laden, sugar-loaded icing cream into my mouth. So, despite the rhetoric, I have to concede that when it comes to barely there cancer-free diets, I am a novice. No, strike that. I'm not even a novice. I'm a non-starter. If there's a way that I can do this malarky part-time while still enjoying some of life's vice-filled pleasures, then I'm down with it. But there's only so much vegetable juice that you can down before you start to indeed feel like one yourself. So for now, I've realised that if I can't be a 24-7 virtuous, vice-free chick all of the time, then some of the time is just going to have to do fine. For now anyway.
But what of life ? Well, to borrow the title of a much-loved Mike Leigh movie, Life is Sweet. It is indeed, well sweet. I'm happy and feel blessed to be surrounded by people who I love and who love me. But as I write this, I'm well aware that I'm once again at that crossroads of a junction - the period in between having had a scan and awaiting the results. Since this is my third bout of scanxiety, you'd think I'd be a pro at the experience by now. But the waiting still freaks me out, so much so that I'm beyond feeling scared. Can you remember what it was like to get caught at school doing something that you really shouldn't be doing and being so scared of what the consequences might be when you're folks found out that... you kind of just stopped worrying ? I mean, it wasn't like you were no longer scared, you were beyond scared. You were too worried to worry. Completely zoned out in a zoneless zone. It might sound like some kind of zen-like blissful state but the real emotion here is numbness. I've realised that I've worried myself into an emotionless corner. I guess it beats trying to second guess the experts by taking a sneak preview at my scan (don't worry, I won't be going down that road again...) but my lack of focus and feelings about my imminent appointment with my onc feels a bit like I've overdosed on anti-depressants and am now having a hard time seeing the sunshine for the clouds.
But no matter, since this is fast becoming my new normal, I guess I should start getting used to it. What I don't understand is why no-one's ever written a book about this subject ? Forget the 'I-ran-a-marathon-after-my-lumpectomy-and-loved-it' confessional; that post-chemo, post-mastectomy state of nirvana that so many publishers seem to be drawn to like bees to honey has got nothing on the this-scan-could-well-be-my-last drama of the metastatic cancer patient. Maybe there's a Hollywood blockbuster in there somewhere. Now all I need to do is try to convince Mr Spielberg that this idea truly has legs. Well, it certainly has breasts. So by Hollywood standards, I guess I'm already half way there.
Thursday, 8 March 2012
The Truth About The Milky Way...
Now the reason why I'm telling you all of this is because in my quest to stay on this earth for as long as I possibly can, I've given up all the epicurean vices that I once adored. Plainly speaking, I've cut out milk, cheese, butter, alcohol, refined suger (well if you don't include the dark squares of chocolate that I guzzle down on a daily basis) and biscuits, cakes and anything else that usually makes my taste buds come alive. In its place I've introduced spirulina powder, manuka honey, nuts, seeds, turmeric, broccoli sprouts and vegetable juice. I know that I'm now sounding like the last person you'd ever call upon if you ever fancied a debauched night on the tiles, but I still like to think that I'm an interesting, karaoke-loving kind of gal who can fling on a party dress at a moment's notice and get down with the best of them - just don't ask me to man the bar or expect me to bring the dessert. My new regime (as much as I've always been a health nut, I have to admit that some of the concoctions that I now down on a daily basis truly make me wonder if I'm taking part in some military endurance test) is hard work mainly because I realise that when it comes to dairy, I'm the female version of Alex James. I miss it the way a dog misses a bone. I was the only one in my family who would regularly down a glass of milk for pleasure. And I can name at least ten different types of cheese and even tell you where in the world they're produced. I'm not bragging, just making a point. My point being, that I was the milky bar kid long before he was ever invented. I wasn't just into dairy, I was crazy about Dairylea. Even before I knew the meaning of the word, you could say I was destined for a a cheesy life.
So why am I doing this ? What exactly is the evidence for and against dairy when it comes to breast cancer ? Well, the first person who turned me on to this way of thinking was the queen of anti-dairy herself, Jane Plant. For those of you not in the know, for the last decade or so, Ms Plant, the one with the doctorate in geology, has been writing about the evils of milk solids. She started researching dairy after being diagnosed herself with the disease not once, but five times. While this experience would have been enough for most of us to throw in the towel and summon the services of the nearest priest, Ms Plant set to work trying to find out why her body seemed to be letting her down on a regular basis. Her findings on milk and milk products as hormone disruptors haven't convinced everyone and although she now lectures to oncologists, some still find her arguments too simplistic and anecdotal. After reading her book for the first time, I was shocked to find her blaming a friend's recurrence of breast cancer on a relapse of a cheese sandwich !
But it was listening to my oncologist tell me about a recent medical study which looked at the relationship between milk production and breast cancer occurrence which made me think again. The bottom line is that the milk we drink today is produced in a very different way than it was when I was a kid. Pregnant cows naturally produce more milk and so are milked more often than non-pregnant cows. But as well as milk, they also produce a hell of lot more hormones too. They're also injected with hormones to make them produce more milk. Humans ingest these hormones which in turn then interfere with the functions of our own hormones. We all know that breast cancer tends to be a hormonally driven type of cancer. When my onc told me that if she was me, she'd avoid milk and dairy products like the plague, that was enough for me to turn my back on the white stuff forever.
I can't say that it's easy. I do have my days where I slip off the wagon. And I have to say that the pleasure derived from biting into a delicious slice of mozzarella-topped pizza is almost better than, well, any aphrodisiac that I've ever had. In Japan and China, there isn't really a word that describes dairy; most probably because they hardly eat any. And they can't understand why we in the West are so in love with the stuff. They also have much lower rates of breast cancer than us. But the rate in Asian women increases once they emigrate to Western countries.
I don't know if my abstinence will make any difference to a metastatic breast cancer diagnosis, I just know that doing something is better than not doing anything at all. My thoracic surgeon, a man of traditional science, who also respects and embraces the holistic methods of Eastern medicine, summed it up perfectly when he said to me after I told him about my green tea, turmeric taking diet, 'Why not ? what have you got to lose ?'. I know that not everyone agrees with this. 'Eat what you like' responded another onc when I quizzed her about the benefits of a green diet. Other cancer patients feel that with so many liberties taken away by the merry-go-round of scans, blood tests and debilitating treatments, why bother to deprive yourself of the little pleasures in life ? Perhaps my abstemiousness puts my mind rather than my body to rest. Who knows ? Who cares ? If I stay in NED for an extended period of time who cares how I got there as long as I'm there ? And if it means I have to pass on a piece of parmesan every once a while, then so be it. But if anyone knows of a good, tasty, orgasm-inducing vegetarian cheese substitute, I'd love to hear about it.
Monday, 5 March 2012
Pandora's Pet Scan
I know. It's been a while since I dropped by. I've had good intentions, really I have. I have at least three unfinished posts to prove this, but every time I think of blogging I can't help but think of the loss of three internet 'friends' which has occurred over the last few months. I didn't know them in real life, nor really within the context of the blogsophere. I once wrote a comment on one of their blogs but I was, more often than not, a silent reader. But the loss feels substantial and has affected me in ways that I never really imagined it would. How can I really feel so much compassion for people that I've never met ? Perhaps I am just being selfish. The knowledge that metastatic breast cancer kills exists in all of us who have this disease. But in everyday life when I'm exchanging celeb gossip at work, or playing at home with my child, I choose to switch off the white noise that is the cancer default switch - the one that usually buzzes around in my head like a swarm of angry bees. I can't say that I forget for a while. Because forget is perhaps too desirable a word. No, I switch off. And I celebrate the fact that despite the treatments, despite the lack of pre-cancer energy, I am alive. And well. Well, for now anyway.
And really, there is much to celebrate. My birthday for one. All forty-three years of me enjoyed cake and red wine last month with the gay, giggly abandon of a teenager. I made no effort to rally friends and family around. I just wanted to enjoy the day as it unfolded, without expectation, without ego. And it worked. Being aware of myself for a change rather than what others might be thinking of me was such a relief that I wondered why I hadn't practised this kind of thinking before. Mindfulness is what meditation yogis call it. And apparently it provides all kind of health benefits. Although living in the now and having cancer are strange bedfellows. Staying somehow suspended in the present is the way that most of us cancer patients 'cope' on a day-to-day level. We know that if we thought long and hard as to what the future might hold, well, we might decide to give that forthcoming episode in our lives a miss.
But wait, what of the other good news ? The good news. I mean the really good news is that I'm currently NED!!!! No, not the abbreviation of some hot new rap group, but that physiological state that us cancer patients all aspire to. No. Evidence. of. Disease. The first time in over a year since diagnosis that I've managed to reach this current state of nirvana. The truth is, I don't even like to proclaim it too loudly lest I jinx myself for next time, but the real truth of the matter is, NED comes with a price. What price, you might ask ? The huge amount of scan anxiety that I seem to face before and during the whole tortuous process. In the last month I've not only had a PET/CT scan but also a CT brain scan after I complained one too many times about headaches. For someone who is often not short of ways to express herself, this time I have truly failed to find the words that explain the sheer anxiety and terror that accompanies the knowledge that in the space of a thirty minute consultation, my whole future could implode. And rather like the experience of being told that you have cancer, it doesn't matter how many times that you go through it, somehow it never gets any easier.
But let's not get maudlin. Let's say goodbye to three formidable women, who blogged their way through the same anxieties, the same hardcore drugs that I'm currently on, who made me feel less alone on many a lonely, fearful night and who inspired me to tell my own story. I know that at the moment I'm incredibly lucky. I also know that this reprieve could come to an end all too quickly. Just before I was given my good news, I have a confession to make. I looked at the disk of my scan before my doctor had a chance to. A crazy, crazy, utterly insane thing to do. I know.
In the world of private healthcare you are always given a disk of your scan before your own doctor has had a chance to review it. Quite why they would want to thrust a Pandora's box into the hands of an anxiety-ridden patient, I just don't know. But I guess in the world of corporate healthcare some would call it value for money. Well, of course like Pandora, I opened the box and saw what I thought was extensive spread to my pancreas and kidneys. I cried and worried and gasped and cried and prayed and worried and cried and gasped for the rest of the day. And then I had the rest of the weekend to imagine all kinds of terrible things happening within my insides before I had the chance to see my doctor. As I have already revealed, thankfully my own personal diagnosis was way off the mark. That day, I proved to myself as well as to my two bemused consultant oncologists, that just because I choose to spend my time reading breast cancer abstracts on the internet, I am indeed no doctor, scientist or pathologist.
I'm just a very terrified 40 something woman who on the outside looks as though she is coping well. I try to sound confident and positive when really sometimes I'm so frightened deep within. I wonder now when I look back at the beginning of the blogs of Toddler Planet, Just Enjoy Him and The Cancer Culture Chronicles, if this was the way all these remarkable women chose to deal with their cancer too. My thoughts are often with Susan, Judy and Rachel as it is more often than not with the partners and children that they sadly leave behind. I feel angry but hopeful at the thought of metastatic breast cancer being a chronic illness. Angry that it's so damn obvious that we just aren't there yet but desperately hoping that one more woman will not have to lose her life in this tragic, tragic way.
I guess that's all I have to say.
Thursday, 26 January 2012
G is for Gratitude...
After a year of private healthcare which often involved experiencing the kind of hospital cuisine that NHS patients can only dream of, I seem to have fallen back to earth with an abrupt bump. My insurers have decided not to fund the current drugs that I'm on, namely capecitabine and lapatinib - because they know that there's the risk that I'll be on them for the long term. I'm hoping that this will certainly be the case and that this current chemo and targeted therapy combi will keep those pesky cancer cells at bay for a while. I'm not keen to use up the arsenal of drugs too quickly, especially since I know that there isn't exactly a bottomless pit available when it comes to treatments for metastatic cancer. So with this knowledge at the forefront of my mind, I'm still juicing with a passion. I'm still taking the chinese herbal drugs, the aspirin and the turmeric. Who knows what such an eclectic cocktail of herbs and spices is actually doing to my insides ? Still no matter, let's call it an insurance policy that I hope I'll never have to call on. Regarding the hardcore drugs that my insurers won't fund, in this instance I've been lucky. I have the good old NHS to fall back on and will switch to this beloved, often maligned national institution once my current prescription ends.
But the other day I had to go to Guy's to sign some consent papers and I walked into what I can only describe as the busy mayhem of an early morning NHS clinic. The waiting room, which felt like one large refectory, had none of the complimentary teas and coffees on display which I had previously took for granted in the world of corporate waiting lounges. Neither did it have the glossy escapism magazines that often seduced me. Instead I saw a ticket dispenser where patients took numbered bits of paper as if they were taking part in a lottery. I saw more cancer patients in one room than I'd probably ever seen in my lifetime. Young, old, white, black, asian, fat, thin, short, bald, hirsute, male and female: there was an example to fit every demographic of the current population of Great Britain. I still find it strange that the mention of the word 'cancer' seems to make so many people uncomfortable - especially when (going by the numbers of patients in the waiting room) way too many of us seem to be afflicted with this disease.
But I waited and watched and watched and waited and by the time I was called in to see my doctor (the very same that I saw as a private patient) I began to feel much more grateful. Grateful that I live in a country where I can move so seamlessly between private and public care. Grateful that I live in a country where we don't yet have a two-tiered health system - where I can see the very same consultant oncologist on the NHS that I saw as a private patient. Grateful that regardless of class, creed or colour, the NHS offers free healthcare to all. Sitting in that waiting room watching a man with a wooden cane shuffle uneasily forward to speak to the receptionist, I began to feel a touch of guilt. Because what I've always felt when I walk into a private hospital and I use the designer creams and drink the posh herbal teas, is the feeling that this 'luxury' should be available to everyone. When you've been diagnosed with a life-threatening disease, usually after having grafted your way through life and by dutifully paying your taxes and national insurance payments in the process, being pampered with posh grub and perfumed creams should be a given, not a privilege for the select few. Just as I was mulling over this communist manifesto in my head and starting to feel more and more like the main man himself, I was called in to see my doctor. We talked about the side-effects of the drugs, the fact that my white blood cell count is a bit on the low side at the moment and the hope that we both have that this disease will become a chronic illness that I can live with rather than one that will finish me off. Regardless of how much I like my doctor and the fact that we can start off talking about cancer and end up gossiping about fashion and childcare and the frustration of family members (namely partners and over-protective mothers), I always realise that nothing brings me down to earth more abruptly then a trip to see my oncologist. And of course, this is what you would expect. Because it doesn't matter how much make-up I'm wearing, or how healthy I might look or just how pink the shoes that I chose to wear might be, when I'm sitting among the masses in an oncology clinic looking at the motley crue of patients waiting to see their respective doctors, all I can think of is the obvious. I'm sitting in a waiting room with a room full of cancer patients. Cancer patients. How the hell did I get here ?
Sunday, 15 January 2012
Every Cloud Has a Silver Lining...
My hair. Could there be less of a reason to write a cancer blog ? While I currently still grapple with the next phase of my new normal which involves taking a mammoth supply of 17 tablets a day (yep, you heard me. 17 !), I realise that perhaps moments spent wondering about the condition of my follicles might not be the most enlightened way to spend my time. I have to shamelessly admit that I take great pleasure in getting caught out on tube, train or bus at different times of the day with said pills in hand. Nothing delights me more than to watch my fellow previously-stony-faced fellow commuters watch in amazement as I guzzle down 5 hefty tablets in quick-fire succession. I can't imagine what they think they might be for. Is it cold turkey, a heroin substitute or just a remedy for a mild form of heartburn ? I find it wholly entertaining just observing their confused expressions.
But as you know, I returned back to work recently and as we all know, human beings are very visual creatures. Especially the females among us. No matter that I've returned back to work after having had my cleavage split into two, no matter that I've spent the last year trying to recover from a cocktail of poisons, no matter that I'm still in treatment. What is the main thing that folk focus on ? My hair, dear reader. My hair. I thought that I might have at least been thrown that often overused phrase that awaits the cancer patient on her sojourn back to the real world; the 'My, don't you look well !' utterance. But the reality was, I didn't. I have dark shadows under my eyes, still nearly there eyebrows and hands that look as though they had spent the last month washing crude oil off North Sea seagulls. But being the sweeties that they are, they overlooked these minor details. So after a mixture of welcome back greetings ranging from barely there hellos (from peeps who probably felt too uncomfortable to say little else) to humungus full-on bear hugs (which I found soooo sweet that I felt myself close to tears on way too many occasions), I can proudly report that on no fewer than three occasions, I received not just great compliments about my new haircut, but repeated ones (and boy, there is nothing like a compliment uttered not once, but twice by the same person for you to realise that for just once in your life, you might have got one thing right that day). First up was my editor who practically exclaimed when she saw me to tell me how much she was loving the new hairstyle. A great start considering that I was only in for that morning (something called being on a phased return) and was feeling very conscious about being the new 'part-timer' in the office. The next, and I consider this to be my biggest coup of all - the resident fashion stylist greets me with a massive hug and tells me how much she's loving that silver streak out front. When I tell her that none of it was intentional, she just keeps grinning while still admiring my hair - the way fashion folk do when they see something that they think is 'on trend' and are just happy to be the first ones to witness it. And then of course there's the writer who I've renamed the 'cancer journalist', since in the time that I've been away, every feature that I've read about cancer since my diagnosis has been penned by him. He loves my hair too. Grreat ! Perhaps not so great that I've spent in excess of £100 on wigs trying to look like my former self. But it seems as if my former self was so off-trend I'm surprised I didn't get marched home with my P45 in hand.
So there you have it. A new looking me sans afro has emerged post-chemo to eclipse the old me. The greatest thing about being back, bar the reassuringly formulaic canteen grub, is not the frothy cappuccinos (even though I missed them terribly while I was away) but the frothy chat. And there's nothing like working on a glossy magazine to remind you that beyond the diagnosis of cancer, beyond the chemo, there are a whole lot of folk out there who take the business of looking good very seriously indeed. And at times like this, I absolutely love them for it.
Tuesday, 3 January 2012
Happy New Year !
It seems fitting that I should decide to post just in time to wish you all a happy new year.
After a two week break from blogging to make space for a myriad of scans, doc consultations, last minute present buying and a few journeys up and down on the motorway to see family and friends, my latest new year's resolution almost definitely includes a visit to this address more often. And boy, what a rollercoaster of a year it has been ! From being diagnosed with metastatic cancer, to the race for blood tests and scans before starting a pretty caustic combination of chemo and targeted therapy, then straight into major, major surgery and then some complications involving a plastic bag, a leaky wound and a 3am trip to A & E, and then... not content that this should be more than enough for any woman to experience, let alone one who has just become a mother of a baby who spent the first month of his life fighting for breath in a neo-natal unit.... I get diagnosed with cancer again ! Just five months after the operation. I think it was Woody Allen who coined that famous saying... 'Want to make God laugh ? tell him about your plans' and well, in my case, he surely must have been splitting his sides.
But I digress. Since self-pity is not one of my strong points and an activity in which I refuse to allow myself to wallow, I'm going to focus on the good things that have already happened this year. Yes, dear reader, the good things. Because there have already been some good things this year, such as my return to work. 'Work ?' I hear you say, who enjoys going back to the grind after a two week binge fest of stuffing, turkey and copious amounts of champagne ? (well, perhaps it was more like sparkling wine this year since we're all on a recession session at the mo). Well actually, after not just a two week break, but listen up folks, A TWO YEAR one, I found myself this morning casually sauntering into an office that I waved goodbye to when I was about three stone heavier and a whole lot more hirsute. Would I have had the courage to do this if I hadn't been faced with all the challenges of last year ? Probably not. I may well have wasted much time wondering what my colleagues were really thinking of me, or whether my stand-in did a much better job while I was away. But today, I walked in, sat down, switched on my computer and calmly reclaimed a part of my life that I really had begun to think had vanished as quickly as, well part of my sternum had all those months ago.
And while I felt dog-tired after only a few hours there and also felt a touch guilty for being able to casually scroll through my backlog of e-mails while sipping on a cup of tea when I knew that only a few miles away, my partner would be at home wrestling with a tantrumy toddler, it felt good to feel like me again. My new hair, which is still a very close crop, a kind of Grace Jones look without the quiff or the attitude, brought me a whole host of compliments despite the fact that it really wasn't of my own doing. Of course, I made sure that I piled on a bit of slap before venturing out of the house, mostly to cover up the fact that the current course of oral chemo tablets have made my face and hands just a touch patchy in places. But a more interesting revelation, was just how much I'd forgotten while I'd been away. My journey from train station to workplace involved taking a few wrong exits, a trip to the wrong floor which almost found me making a beeline for the editor-in-chief's office, and a momentary panicky lapse of memory when I realised that I couldn't quite remember where the toilets were. But fortunately, despite the fact that the chemo probably didn't help matters, I'm pleased to say that my memory for such things returned pretty quickly. And the most brilliant thing to happen, beyond having had a lovely Christmas and an eventful New Year to relay to my familiar work colleagues, was just how little I thought about Cancerland for a change. And the luxury of being able to lose oneself in an activity or a conversation however small, is far more therapeutic than any spa treatment that I've ever indulged in. Of course, I know. It's only been a day. Ask me how I'll feel after a year's worth of morning commutes and office politics, and I'll tell you. But not until Jan 3rd, 2013.
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