• A number of friends have told me that 2012 has honestly been the worst year of their life. They have lost family members, friends, partners or have in some way had a loss that has set them into emotional freefall.

    I have to say that it certainly ranks as one of the toughest for me too. Now, I love a good list but in this case, with the way I feel at the moment, a list of all the things that have happened this year only assists me in my current quest to wallow in sadness without a clear direction out of it.

    One thing I have learned about myself is that when placed under extreme stress, I can be a little prone to want to make lots of decisions or push to make changes to my life to try to counteract whatever the stress element is. This doesn’t always affect the people I love but sometimes they get caught in the crossfire or neglected when they should be exactly the people I talk to. I’m all trousers and no mouth, as it were.

    So now, yet again backed into a bit of a corner by life, I’m trying not to just curl into a sobbing ball and it’s not working very well. I am literally feeling pain from all the stress hormones buzzing around my body. It feels like the beginning of a race or the moment where I realise I’m being chased by a bad guy… And I’m rooted to the spot when I want to be running.

    I am trying my best not to reject everyone and everything. I already failed that with several of my best friends this year and three is plenty; I am extremely lucky that they speak to me at all. I know that this is proper weapons-grade self-pity but I feel like the destroyer of worlds at the moment.

    The thing that tips me over into angry prison-break mode is that I’ve now made it through chemo, but instead of celebrating, I have been awarded the generous prize of a double mastectomy for my trouble, thank you very much. Now, I’ve never been particularly endowed in that department so it’s not like a huge loss of volume will occur… But I already look like a bald bloke if I wear the wrong clothes (a bull dyke, suggested one dear friend) so having no chest at all may also set me back considerably in the feeling attractive department. It’s not like I’ve had a lot of offers recently. And I’m very hard work. Ask my exes. (They’re racking up). So I could end up a grumpy lonely spinster with only a part-share in a stinky dog at this rate.

    To avoid memories of the way I felt this time last year, I’ve planned a trip to Bruges, Brussels and Amsterdam this Christmas and New Year. However, even that appears to be unravelling now. I am thinking of re-naming Christmas to “shitmas” because that will be three years in a row with me feeling royally pissed off and not really wanting to talk to people on Christmas Day.

    I’m trapped in the land of stress and sadness and looming medical procedures for the foreseeable. So, that makes me angrygirl73 wanting to throw stuff and shout a lot and run away with the circus and yet not being able to, for fear of upsetting more people than I’ve already upset.

    There’s a John Lewis advert out at the moment that launched a couple of weeks ago for Christmas. The advert is called “The journey” and is sung by Gabrielle Aplin. It follows a snowman on a romantic quest to buy a gift for a snowwoman and uses the song “The Power of Love” by Frankie Goes to Hollywood (No.1 hit in December 1984, pop pickers!!).

    My musical friends could probably tell you all about the minor key it’s in and the construction of the song being designed to provoke an emotional response etc. I just know I want to run away sobbing whenever I hear it, so that does suggest getting away from all TV may be a good call this shitmas.

    Last night, one friend who’s had more an their fair share of sadness in the last few years said they are seriously considering running away. I didn’t have to think too much to know I feel the same way and I said “can I come too?!”. When you’re depressed, that trapped feeling is one of the most horrible feelings of all. Running away is at least DOING something. Going off travelling the world in a camper van with friends for a few months is an extremely enticing idea. The dream of escape.

    Dreams are like angels
    They keep bad at bay (bad at bay)
    Love is the light
    Scaring darkness away

    The power of love, a force from above
    Cleaning my soul
    Flame on burn desire, Love with tongues of fire
    Purge the soul,
    Make love your goal

    I’ll protect you from the hooded claw
    Keep the vampires from your door

  • So this weekend’s been better than last.

    On Friday, I managed to nurse a pineapple juice and a water for an hour with the gang from work in the pub. On Saturday I… um… well I slept in a bit and I cooked up a steak ciabatta for tea. But that’s better than nowt. Then today… better still (mostly). I managed to get out to see Skyfall at the 10:30 Matinee at the cinema – having picked that as a time that I can usually guarantee to have come around from sleep and not totally want to go back to sleep again yet. I really enjoyed the film (and Daniel Craig of course) and it gave me lots to talk about afterwards when I went to a new local pub for lunch (The Legstraps in Wootton – which was pretty good!). I only had to pull the “too weedy to drive” card on the way back. Yay!

    Tonight… was less fun. It involves things one doesn’t normally talk about. That’s probably why it’s been a bit of a nasty surprise for me to have to put up with it! Somehow seeing the toilet bright red with blood is more frightening than cancer. Weird, huh? I know I’m just having a wobble at the moment but it’s hard not to feel sorry for myself confronted with that. Someone else can say it so much better than I can though so I urge you to have a cackle at her blog… here’s Lisa Lynch with her post “And it burns burns burns“. It’s no wonder babies with sore bums have a good WAIL, that’s all I’m sayin’.

    So… October is the month my mind has been playing silly emotional tricks on me – because let’s face it I got this far with good humour. After all, one second everything is cool and then I’m finding lumps and having operations and having people be kindly to me and having chemo and being prodded with needles and I’ve taken it all pretty much in my stride and got the f*ck on with it.

    Last week for chemo #7 though, I was feeling pretty glad there is only one more of these goddamn treatments. The nurse REALLY hurt me trying to get the drip canula in to my arm – so much so that I couldn’t stand it and I didn’t have any more good humour left. I was sat there with my bottom lip wobbling and tears rolling down my face on the sofa by the time my sister arrived to sit with me. (Meanwhile the nurse was writing on the notes “patient in tears”). So I just had to say to the nurse: “No, you’re going to have to take it out, it hurts too much.” and when she did, she said “Oh, well that’s why it hurt, it had BENT in your arm.” – “Oh nice one,” I thought.  (I’m feeling pretty grumpy about that too!).

    Anyway, that and the stuff last weekend really knocked the stuffing out of me. I can do being strong about having cancer and chemo. I don’t let much of it get to me as long as I can understand what’s wrong and know there’s (probably) a solution or a outcome that follows some kind of progression and makes sense. However, stuff that hurts emotionally and is completely undefinable is rather more tricksy and I need to not think about it again for a little while.

    It’s not really surprising that things are beginning to take their toll. It’s been a few months of not-normality. I keep finding things that I like to eat or drink that I’m not allowed to have now. I’m not even supposed to drink bottled water, so all that monitoring my fluid intake and stuff I was doing really well with, has gone a bit flat. To top it off with this Taxotere treatment, the food and drink I am having all tastes like Plasticine with rusty nails in it! Anyone who knows how much I love food will tell you; this is a Very Bad Thing.

    What with the complication of having to think about what containers I am allowed to even drink out of, I’m finding it harder to put in the effort to keep my water intake maintained. This then probably led to my toilet disaster scene. It’s all getting to be a bit much at the moment, I think I’m just becoming a bit depressed and that’s affecting my motivation to look after myself properly.

    Must try harder tomorrow, and stop being mopey.

    Also for now, I must stop typing because it hurts my effing fingers. Grr.

    Saw it written and I saw it say,

    pink moon is on its way.

    None of you will stand so tall,

    pink moon is gonna get ye all.

    And it’s a pink moon.

    Lyrics by Nick Drake

  • Well, actually one positive thing to come out of the last 2 weeks of feeling poorly and grumpy is that I am now pretty angry, which should feed my creativity. I write poems when I’m angry or sad, and when it’s both, watch out. To top it all off, basically someone I care about, just provided the opportunity for the person who bullied me some years ago, to be able to hurt me with their thoughtless words and make me feel like a nobody… Again.

    I don’t give up easily when people attack me, believe me. It takes months of sustained confrontations, things said to undermine me and my abilities, my relationships and my validity to exist before I start to believe that I am not wanted, unwelcome. At that time, I clung on fiercely to the belief that I am better than what was being said, despite people being manipulated and beginning to follow that pied piper. I held on to hope that I could mend the situation and come back from it stronger. I would change whatever I had to about my demeanour to make it so nobody would know how it affected me and it wouldn’t involve anyone else (by my doing, anyway). So most of my friends didn’t really know until it was over, what the impact of it had been on me. I kept my comments to myself, wanting to maintain the moral high ground.

    It was a utterly miserable time in my life and I deliberately only rarely think about it now – mostly because I try to focus on positive things.

    At that time, someone I care deeply about let me down. The one person who could have truly empathised with me and the mental torture I was put through, because they saw it happen. They lived through all my anguish, my questions about whether I should stop fighting and just give up. When I began to believe the story that I was no good, they talked sense into me.

    So then why, I don’t understand why they couldn’t see that having to do more than have a five minute conversation with that person, pretending it all never happened would be difficult for me. It reminds me of too many negative things, and I don’t want that. So I am polite, and friendly, and I don’t think I’ve let on or given anyone else a reason to believe that the situation is uncomfortable for me… It’s in the past and I don’t get involved in holding grudges. However, I must be an awesome actor. (Not an asshole or a waste of space, after all!) I did such a good job of pretending that period of time is water under the bridge it seems I convinced everyone, including the person I kind of hoped knew better than that, that everything is cool and I don’t care.

    So roll forward in time and I am in a position where none of that old crap should matter anymore, because if they want to hang out with each other, I don’t have to be there; I left.

    The person who lived through all that stuff with me, gradually had stopped talking to me about the stuff that matters. They’d stopped engaging with me on an emotional level. I was angry and sad and they wouldn’t listen to me. I know I shouldn’t have just walked away from that, but I did. I felt betrayed. I started seeing someone else who can’t be directly compared to him. I tried to maintain a relationship as best I could with him.

    Except last night I got trapped in a situation that basically forced me to confront my choice to leave him.

    I was already eating dinner with other people when he arrived, clearly on a date. Unfortunately he didn’t see me and just got on with his meal. I’m sure that it’s basically none of my business, and I should shut up whining about the situation of my own making… except for the fact that I was so bloody close to their table I was pretty much on the date with them. That was just a bit much because I had to keep smiling and joking with my companions, and pretend I wasn’t a bit freaked out.

    I freaked out because I’ve worked pretty hard for several months now to make sure that situation wouldn’t happen. I went to places that weren’t our places. I cancelled gigs and sold tickets if I found out he would see me there. On this occasion, there was no way for me to escape, and it reminded me that no matter how well I try to organise myself, I really have little control over life’s rich tapestry and particularly, I have too little control over what comes from the cancer crap I’m navigating fiercely through.

    It says to me – “Hey, the universe doesn’t think you have been punished enough for your choices in life. Heck, choice is for wussies, so here, have something more to put up with, right IN YOUR FACE in a way you can’t avoid it” – so as you can imagine, that has made me feel really really really angry and unhappy.

    And then… through no fault of their own this time, the bully gets to tell me the name of my potential replacement on that same evening I’ve just been confronted with her by fate. Hey universe, give me a BREAK will you?

    So… I’m not angry with people, I’m just angry with fate, and chance, and life, and me.

    The world is a vampire, sent to drain
    Secret destroyers, hold you up to the flames
    And what do I get, for my pain?
    Betrayed desires, and a piece of the game

    Even though I know – I suppose I’ll show
    All my cool and cold – like old job

    Despite all my rage I am still just a rat in a cage
    Despite all my rage I am still just a rat in a cage
    Then someone will say what is lost can never be saved
    Despite all my rage I am still just a rat in a cage

    Lyrics by Smashing Pumpkins

  • What an amazing few weeks! I had an extra week off after treatment number 4 – meaning I could have a week away in Paris, then a few days in Brighton at conferences and events, before having the first of 4 Taxotere treatments (once I’d finished enjoying myself – get the priorities straight, right?).
    Paris was so much more fun than I’d even anticipated, because it was jam-packed with activity. Here’s a lovely snapshot of some of the things I saw and did there:

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    My MANY wonderful visits included

    • Nôtre Dame de Paris (though not inside) – we were very close by there so I actually went past it many times – and during the first evening, I walked past people dancing on the banks of the Seine to a variety of music… There were couples doing the Tango in little sunken areas where the steps on the terraces led down to the waterside with small groups at the top of the steps playing their instruments (violins etc.) without sheet music it seemed, and a small audience scattered around the steps themselves.
    • The two islands, the Île Saint-Louis and the larger Île de la Cité were great for restaurants, cafés AND strange little boutique shops – and I was fascinated by the Love Locks – huge numbers of padlocks with love declarations engraved or written on them, on the Pont de l’Archevêché
    • La Bastille and its many restaurants and bars were just up the road from me when I went out exploring in the other direction
    • Musée du Louvre and Arc Marie du Premier. The Louvre was MASSIVE. I can’t tell you how massive really but someone told me that if you looked at each exhibit for 5 seconds it would take you nine months to look at it all. I did see the Mona Lisa of course (La Gioconda) but not up-close; the crowds were 12 people deep! Besides, there were far better artists in Musée d’Orsay – I prefer Pissarro, Matisse, Signac, Cézanne… the Pointillists and Neo-impressionists. 🙂
    • Arche de la Défense and surroundings,with a great view of L’Arc du Triomphe. The photo doesn’t really give the impression of the scale of the thing but its two skyscrapers joined at the top… It’s HUGE.
    • La Tour Eiffel – and its many views from the top – which Wikipedia has made you a nice panorama of! I really enjoyed going up in the rickety gondola lift up the inside of the leg of the tower and being able to see all the iron it’s constructed from – it seems to be pulled up by giant tanks of ballast that move up and down in the foot as you travel.
    • Grand Palais / Petit Palais / Avenue des Champs-Élysées was a good walk, and I had a nice sit down and a delicious lunch of noodles and steamed salmon with coriander after a quick view of the bonkers traffic around the Arc de Triomphe. I’m told that it’s not actually possible to get insurance to drive around it, policies always have a specific exclusion. But I’d say the French way of giving way to traffic coming on to the roundabout (“Hey, come on, pile in! There’s always room for one more!!”), no lane markings and utter nutters driving around it are good reasons to avoid it…
    • I passed L’église Sainte-Marie-Madeleine (La Madeleine) on my way to Place de la Concorde. Everywhere you look there’s interesting architecture in Paris, be it monuments or churches or embassies or fountains, or gardens! It’s wonderful. I do love a good gardens, me! So I migrated toward the Palais et Jardins des Tuileries and the Musée de l’Orangerie there. The Orangerie didn’t actually have a great deal in it, but if you like Monet then there are some whole-room sized paintings in the basement there on all four curved walls, so you feel surrounded by the art. There are big white stone/plaster benches to allow you to sit and contemplate the paintings representing different times of the day/ light levels on the lily pads on the water and the weeping willows. The surroundings are quite restful after the traffic and bustle of Place de la Concorde.
    • Montmartre and the Basilique du Sacré-Cœur were a good vantage point to look back South ofer the city and the Centre Pompidou stood out on the mid-horizon with its colourful exterior.
    • Centre Pompidou / houses the Musée National d’Art Moderne and there was a Gerhard Richter exhibition on the top floor when I went. So I enjoyed wandering past some of his very colourful paintings, and then had a great view over the city back up to Sacré-Cœur.
    • I spent a very relaxing morning wandering around at the Jardin du Luxembourg – which has a lovely view of the Eiffel Tower, and some well tended flowers. There’s a big pond with a duck house in the centre and some self-propelled sailboats. The kids are given a wooden rod and they can turn and set the boats off across the water in any direction with those. So there were plenty of boats gently bumping the duck house and those ducks were just chilled out knowing they couldn’t be “got”.
    • Musée d’Orsay – a converted railway station – now an art gallery. This was my favourite gallery! So much to see, you’d need a full day to really see it all. It’s a real mixture of sculptures, figures, furniture and artwork. I go for the impressionists every time.
    • Tour Montparnasse turned out to be a small shopping centre and an ugly-looking tower block. We stopped by but then didn’t bother going up, since it was fairly expensive and we’d already been up the Eiffel Tower!
    • Then, time to window shop at Galeries Lafayette, Rue Faubourg Saint-Honoré and check out the palatial Hôtel Ritz in the Place Vendôme
    • The Jardins du Trocadéro were a good place to people watch and had fountain displays on the hour, great jets being shot out of canon-shaped tubes across the water and also being shot vertically out of the ponds themselves. It was a great vantage point for a look back across the river to the Eiffel Tower.
    • Further up the river on the Right bank (Rive Droit) you can get a good view of Île aux Cygnes and a 1/4 scale replica of their Statue of Liberty – (apparently, an even smaller statue is located in the Jardin du Luxembourg, and a third copy can be seen in the Musée des Arts et Métiers – but I didn’t see those).
    • I did also go to Porte Dorée – in the hopes of going to the zoo there, but it is closed until 2016!!
    • I had a night-time walk along La Rive Gauche – and across Pont Neuf into the city
    • On my last day I visited the Jardin des Plantes – Paris’ first public gardens and home to La Ménagerie du Jardin des Plantes

    My hotel was very close to Gare de Lyon and ideal for jumping on the Métro – for not very much money we got a 5 day and then a 3 day travel pass. Easy peasy. “Un Passe Illimite, pour cinq jours, pour centre-Paris” and ta-da! A ticket to anywhere I wanted to go.

    I had a couple of doses of Escalope de veau whilst in Paris – very tasty. I went to Île Saint-Louis for dinner a couple of evenings – and there was a guy playing the piano in the street – very well in fact – so I got a pavement table nearby and had a great Beef Bourguignon one night, and Crêpes another night. It was really good weather all week – which makes a change from the patchy weather we’ve had in the UK most of the summer – so I really appreciated being able to sit outside in the evening.

    On the same musical theme there were a lot of street musicians which was great – the ones at the Sacré-Cœur were playing stuff that sounded vaguely Eastern-European which was great fun to watch.

    I had such a busy time that for the most part I could forget about feeling ill – though my poor achy feet / legs were complaining at the end of each day! I must have done a minimum of 7-10 miles a day… especially the day I walked along the Seine at night after walking all through the city (window shopping) in the daytime!

    Hurray for holidays. 🙂

    près de notre dame
    parfois couve un drame
    oui mais à paname
    tout peut s’arranger
    quelques rayons
    du ciel d’été
    l’accordéon
    d’un marinier
    l’espoir fleurit
    au ciel de paris
    (Near Notre Dame
    Perhaps trouble’s brewing
    But in “Paname” everything gets worked out
    A few rays
    From the summer sky
    The accordion
    Of a sailor
    Hope is blossoming
    In the Parisian sky)
    Lyrics from “Sous le ciel de Paris” – Edith Piaf
  • This week, I’ve been mostly worrying unhealthily (and unnecessarily) about cancer. What I did, and what I should not have done perhaps, is go reading blogs of other breast cancer fighters and get immersed in finding out their stories. And look at websites about what happens when cancer recurs. It’s all very scary and upsetting.

    It started because I follow “a little c” and was looking at her wedding post and photos last week. But then I saw her blogroll and thought I’d go off on a little trip around some of the other blogs about this. They’re all amusing, interesting, informative or emotional and I did enjoy reading them, but of course they do tell the whole story. All the scary stuff that did happen to them, is something that could happen to me, and there are some pretty hair-raising things in them.

    Today’s emotional trip-hazard was the result of following a link on Facebook to the blog of a lady called Lisa Lynch, whose writings are very witty and she’s someone who sounds just as anal and mad and slightly OCD and fret-some as I am…

    Lisa is a journalist who is now living with stage 4 (terminal) cancer and has written a book that Stephen Fry says is very funny. I may buy her book… but with the knowledge that it is extremely likely to make me cry, I will only be reading it when I fancy a good wallow. From what I’ve seen so far in her blog, Lisa is very good at making one laugh, cry, exclaim and recognise the familiar within her work. Anyway – It’s her birthday this month… and she’s asked everyone to support a hospice instead of buy presents. After all, you can’t take it with you. Sorry if that’s a bit morbid – and do go and support another good cause if you can!

    The thing that I found reassuring is the way Lisa explains what it’s like to be me at the moment, in a way that I may not be able to without a lot more practice at this writing lark.

    She talks about what it’s like to feel your confidence wane and to lose the inclination to socialise with people when you don’t feel so well. It’s even harder when you’re in a job (journalist, technical architect / project manager, whatever) which requires a great deal of social interaction. Whilst you want to be sociable and know it’s the way you should and can be, everything takes ten times more effort and a lot of psychological-self-encouragement before you feel able to do it.

    I’m having arguments in my head before I phone people, because I over-think everything. I’ve probably always been like that of course, but it only took me 3 seconds to shout myself down and get on with it in the past – and now it takes anything from 3 minutes to 3 months.

    “I mustn’t think about it, I must just do it,” thought Lucy.

    C.S. Lewis, Prince Caspian.

    My emotional contribution to cancer-fighting this far has been to try not to cry too much and to be as up-beat and positive as I can when talking about it. I think the psychological damage of a cancer diagnosis and the chemotherapy I’m having has been limited merely by my refusal to think about what I’m going through in negative terms – well, most of the time, anyway. Having treatment at home and being able to lock the associated crap away out of sight for the most part has allowed me to try and relegate the chemo to the least possible significance in my life.

    After all, having chemo is just a short 1.5 – 2 hour session of a bit of a natter and “A Nice Sit Down” (let’s ignore the pain and trauma of the treatment, remember it as only a quick injection, don’t think about the rest). The rest of chemo day should be spent eating cake or having grazing boards at the pub… (not remembering the dizzyness and the same weird nausea that usually accompanies a migraine, nor thinking about how I flopped about on the sofa last week, complaining about how bright it was and covering my eyes). Then the following weeks are surely just a bit of tablet-taking (again, they could be vitamins, yes, that’s all they are – it’s fine, nothing to see here) and a bit of avoiding people with germs (Ooh, nice, you sneezed on me – oh crap. Right, I’ll be off to scrub my hands and face!).

    My mental contribution to cancer-fighting is to “plan the fuck out of it”, as a friend of mine calls it. I have a spreadsheet that I can record how much fluid I’m drinking each day and how I feel, whether I have any weird side-effects or am drinking/eating more or less than I should. It goes pretty colours the more I drink. The whole set of chemo dates is already booked into a Google calendar and my treatment and drugs regimen is already pre-populated in a spreadsheet with a day per row, split into morning, afternoon and evening, and it goes green when I say I’ve taken my tablets like a good girl. That sheet, besides telling me what tablets I should be taking on 10th October, is the same sheet that shows me when all this crap can stop again. I also have a “fuck off, cancer” spreadsheet with all the facts about things I need to do, or check, or think about to look after myself whilst I have chemo and kick cancer’s arse. I LOVE SPREADSHEETS. 🙂

    My physical contribution to cancer-fighting is probably the bit that’s letting me down at the moment. Fatigue has kicked in. Unlike our great Team GB Olympic athletes, with their 38 medals and counting, I am getting tired just from putting the shopping away. Climbing the stairs at a normal pace makes me want to have A Nice Sit Down. I’m supposed to be walking a circuit of the rather lovely park that sits between me and my office, and there’s really no excuse for not doing some exercise, other than I’m a lazy bugger and I feel tired… all too frequently for my liking.

    …So, I think, “well then, I’m having A Nice Sit Down so often, I should just pick up a book!” I love reading books – or at least, I did do. Have you heard of “chemo brain”? No? Until you have chemo, or children, it’s very hard to comprehend what disturbed sleep and difficulty concentrating is like. (Sorry, to the parents amongst you there, I do know that the second of these is only horrible for a % of the time, but sometimes I feel the suffering is similar!).

    Anyway. Chemo brain strikes, and so I move the wonderful-sounding book from the sofa to the table, and the table to the bedroom, and the bedroom to the sofa. But I don’t open it, because I can’t concentrate. I then get the mickey taken out of me for the rather special technique of moving the book around the house despite never actually reading the book. I am hoping that cancer isn’t taking my love of books away from me as that would be its meanest trick yet.

    My lovely friend NatBat is another book lover. She recently bought me a present: A “It’s crap that you’re not having a fun time, but this might help cheer you up” kind of present. It’s an audio book version of “Room” by Emma Donoghue and she bought it because we both think it sounds really fascinating! I keep looking at it thinking “I should listen to that” but I fear I will start it, then lose concentration and pick something else up and never go back to it. I hate not finishing things. One of my many weaknesses – I can’t stop until something is up to a standard, so it sometimes makes it harder to start.

    I wouldn’t have started this blog, were it not for the “save as draft” button, and the fact that I know there are only about 3 followers – so I can witter on in this cavernous space, publish content “live” with little real impact, and go back and tinker with things later if I want. 😉

    Anyway, I think the “think it, do it” theme (a.k.a. the Jonny Ball approach to life) is what I need a bit more of.

    Your life’s a mystery, mine is an open book
    If I could read your mind, I think I’d take a look
    I’m not scared, Baby, I don’t care.

    What have you got to hide? What do you need to prove?
    You’re always telling lies, and that’s the only truth
    I don’t care, Baby, I’m not scared.

    Lyrics by Neil Tennant