Monthly Archives: June 2013

Cherryshit! Cherryshit!

by

I’ve been on retreat. Yes, I admit it sounds a bit nun-like but it wasn’t at all like that in reality. I have discovered that going on retreat turns me into a dormouse. Many of the wonderful talks that have been prepared for me pass me by as I sleep through them. The seats are very, very comfortable and tilt back. There are matching footrests at just the right height and we are given blankets to cover ourselves with so it’s not really a surprise to find I cannot keep my eyes awake. A doctor comes to give us a talk about nutrition and I find myself asleep within minutes. Periodically I will surface and nod encouragingly whilst hoping I am not snoring too much. I notice during one of these periods that some of my compatriots are also asleep or on the verge of so I don’t feel so bad.

We are the usual disparate group of people and form a cohesive group quite quickly. It is clear that we are not all going to be lifelong friends but some stronger bonds are forged which will last. Having no chores to do and a small amount of free time allows us to behave like school children, giggling and messing about. Some of us have smuggled in contraband and feel daring drinking coffee in plain sight. I put my KitKat wrappers in the communal bin in the refectory and hope they don’t search my cases.

On the second evening, we are having supper together and bemoaning (obviously far too loudly) the fact that we won’t be having Biodanza that evening. What Biodanza is is something of a mystery but Becky has looked it up on You Tube and it appears to involve lots of twirling, finger pointing and looking deep into each others’ eyes. We don’t think we’re up to it but say how disappointed we all are not to be taking part whilst secretly sighing with relief. Near the end of supper, we are joined by a fair haired woman who tells us we will be having Biodanza after all! We fix grins on our faces and wish we hadn’t been so clever. We are told which room to go to and duly traipse off, each daring another to not go or to run away. I am wearing sheepskin slippers and feel I cannot possibly do it justice in such attire but others tell me it will be just fine. If one is going to do it then we are all going to do it. We find the room which is large and has a piano in it. We spend time shoving each other through the door like 6 year olds, mucking about. The room is very pleasant and has large windows which reach to the floor. One is a door leading out to the garden. “Does this door open?” I ask and, before I know what is happening, I have the door opened and have stepped through it like a character in a farce, just as the Biodanza teacher arrives. I leave behind a room with several outraged faces in it, furious because they hadn’t thought of it and I am now not going to have to humiliate myself by dancing. I go to sit on a bench by the water feature and ring my husband. To be honest, I can’t see much of what is going on in the lesson except occasionally I see my friends making faces at me or bending over in an amusing way. After a while, I go up to my room and revisit my dormouse tendencies.

Over breakfast the next morning, I am castigated for escaping and given a blow by blow account of the Biodanza class which, to be fair, most people seem to have enjoyed. Apparently it involved people dancing by touching forefingers together in quite energetic ways which was tricky to manage but the slow dances they found the most embarrassing as they had to gaze lovingly into each other’s eyes. It also lasted for an hour and a quarter which made it a very long day. I do not feel I missed something essential to my being so am smug about my escape.

There are 2 stories we shared between us which define the humour of this retreat. I saw a woman on television talking to her friend about children’s birthday parties and how expensive and complicated they had become. One woman said she had so much to do, buying presents, preparing the food, filling the party bags – she was quite worn out with all the work. The second woman said to her “My children are too old for parties like this now. They just want pizza and a video. Cherryshit! Cherryshit!” I sat up. What on earth did she mean? Something yound people enjoyed which I didn’t know about? It took a few seconds to realise she was actually shouting “Cherish it! Cherish it!”….

The second relates to the Earl of Oxford who, on being presented to Queen Elizabeth, bowed and farted at the same time. He was so humiliated by this that he stayed away from court for many years. On his return, he bowed again to the Queen who said to him “Ah, my Lord Oxford! I had quite forgotten the fart”. Humans don’t change so very much 🙂

Away with the fairies

by

My friend Suzannah and I are in a cancer centre on a 3 day retreat. The centre is in beautiful grounds around which we do walking meditations and sit staring into space in a meaningful way. The food is lovely – organic and not in the least bit processed and involves breakfast, snack, lunch, snack, supper. Each snack is lovingly prepared and is waiting on a table for us in the refectory for when we have finished a group session.

Our group is the usual ramshackle collection of people snatched from suburban streets of the UK and plonked together. We all do different things, are different ages and in different states of disrepair. I think we all have a sense of humour. We are all happy to talk about how we feel, what’s been happening to us, what we think will happen in the future and for once, the sun shines and we can sit in the garden and watch the plentiful bees. We have mostly smuggled in things we shouldn’t have like coffee and chocolate although we drew the line at wine which was brought in by a member of a previous retreat we had attended. We have our standards, you know.

On day 2, we are arranged a visit by the founder of the centre, a lady in her 80’s. Several months earlier we had been severely warned by another lady who had attended a retreat at the same place that we would be brainwashed into a cult at this point. She said it was sinister and that we shouldn’t go. She told her friend what had been said to her and her friend said it was brainwashing. She had felt isolated and nobody spoke for fear of saying the wrong thing. She said the founder was mad and believed in fairies. Suzannah and I think this sounds just perfect and sign up immediately as it promises to be just like an episode of Midsomer Murders only possibly without John Nettles. And hopefully without the dead bodies but with a real, live cult. We can’t wait.

The reality (and I realise that is a challenging concept in itself) is that we are given a talk by an elderly lady who has worked tirelessly to do what she believes is the right thing. She has Christian values and believes in God but doesn’t get sniffy at those who don’t. She believes in vibrations and higher planes and other things that may not always enter everyday conversation but she is passionate about the work she has done, helping people with cancer have somewhere they can go and talk openly and honestly. We don’t actually get onto the fairies thing because she has been given a strict cut off time of 9pm by which time, to be honest, we are all tired and flaking anyway. She says if she wasn’t with us she would be sitting at home on her own which makes me feel a bit sad for her. I am glad I have met her, though, and she gives us each a card with her contact details on it so we can continue the conversation via email if we want to. So no fairies, no cult and nothing sinister. I should feel disappointed but in reality I just feel grateful.

Tea with Sandra Bullock

by

Today I am at the Young Women’s Group at the Maggie Centre. In enabling my membership they have clearly stretched the point regarding age. We spend a comfortable hour talking about some of the aspects of how cancer has impacted on us individually. Although we are all very different people, we recognise themes and threads from each others’ experiences and the talk is not maudlin or depressing. It’s a space we can talk openly about how we feel and our interlinking experiences form us into a definite group. Our membership ebbs and flows as life pulls members back into work or further treatment and as new young women find us. It’s a good space to have. Our conversation is so intense and centred around cancer that I forget to tell everyone about my recent encounter with Sandra Bullock. It’s either that or my memory is worse than I thought.

On Saturday afternoon I have tea with my friend Emma. It’s a birthday treat and she invites me to a lovely hotel overlooking the Thames at Richmond. The weather is wet in an American horror movie kind of way – the sort of weather you see in films when you know there are people holding huge, cascading hosepipes to replicate a downpour. This one is real and, despite offering her a lift, Emma decides to walk from her home to the hotel. We drive and park right next to the hotel entrance. In the 5 steps it takes me to get from the car into the lobby, I am soaked. Emma, already waiting in the lobby is beyond wet and sheltering with a group of open-mouthed tourists who cannot believe this British summer. You wait until Wimbledon, I think.

We squelch our way through to the restaurant where we are given a table with a lovely view over The Thames where even the river traffic has stopped because of the deluge. Our attention is soon drawn by the 2 glasses of champagne which are put in front of us, followed shortly by tea and a stand with elegant sandwiches, scones and an assortment of tiny cakes. We are very democratic and eat one of every time of sandwich each. But we are terrific gluttons and Emma thinks we need another round of sandwiches each which duly appear. Beyond a low partition in the restaurant a loud party of women are having tea in what we think is an unreasonably exciteable way. We scrutinise the back of their heads and think ‘hen party’ but we’re proved wrong when they burst into a very loud rendition of Happy Birthday. The party at the next table join in gamely. Eventually they get themselves together and stagger off, women of a certain age on a good afternoon out. A short while later, the second round of sandwiches and a scone each into our tea, the Maitre D’ asks if we would mind moving to the bar area as the restaurant is being set up for dinner. We are quite happy with this and are duly moved.

By this time, the rain has cleared and the sun has come out. It is now blazing into my eyes, making all conversation impossible so I move to a chair with my back to the window and facing the party who joined in the singing earlier. There are about 6 people and a small boy all enjoying tea and chatting quietly. That’s Sandra Bullock, I say to Emma. ‘No, I don’t think so’, she says. It is, I insist, trying not to look whilst looking hard. We eavesdrop a little on their conversation, hearing that they plan to eat dinner within the next couple of hours after a short walk and where they are going for dinner the following evening. Sandra and her son head off for their walk while the rest of the party go elsewhere. As soon as they are gone, a woman who is having a drink at a table next to us says ‘Wasn’t that Sandra Bullock?’ The waiter reappears and confirms it is, indeed, Sandra Bullock and that she is very nice. Emma comments her skin is very good and we agree she looks good in the flesh. The waiter then proceeds to have a cab driver kind of conversation. ‘We’ve had them all in here’. You know how it goes. He mentions an actress who was in the restaurant recently hiding away because she is pregnant and doesn’t want anyone to know yet. Hmmm. We leave feeling full and happy. The rain has stopped and we walk back into Richmond so I can catch a bus home. We critique people who walk past the bus stop. Famous or wannabe? There are quite a lot of wannabes and several women wearing shoes we wouldn’t be seen dead in. It’s an entertaining end to a good afternoon.

The pain clinic

by

Following on from my appointment with my new favourite doctor, Dr Berkowitz, he does everything he says and writes to my GP, also making appointments for me with a physiotherapist and at the pain clinic. I like the physiotherapist. She is quiet but thorough and carefully presses the fibro points which are so painful. She gives me Pilates exercises to help strengthen my core and says she will see me in a month to see how I am getting on. She prints out copies of the exercises and carefully writes extra tips down as she understands I won’t remember a word she has said once I leave.

Two days later, I am back at the hospital to go to the pain clinic. I asked my GP what a pain clinic involves and she denies it is about giving me pain but offers me exciting options like acupuncture or hydrotherapy. These I like the sound of. The Royal London Hospital for Integrated Medicine, formerly the London Homeopathic Hospital, is a strange place. Sited in Great Ormond Street, it feels more like a GP practice as it’s just so low key and is the most un-hospital-like hospital I have ever been in. Most people going in and out seem to be in wheelchairs or walking with sticks so I feel a little cheeky walking in unaided on my own two feet. The pain clinic is tucked away on the ground floor and when I find it, it appears to be one lady sitting at a computer in a very small room. It says ‘Pain Clinic’ over the door so I ask her if I’m in the right place. “Yes” she says and takes my name. “Please take a seat” she says, pointing to a couple of chairs outside her office. I wait patiently and shortly, a very pale man appears from behind her chair and calls me in. We squeeze behind her chair and I discover there are a couple of other offices around a corridor at the other end of her small office. Whoever designed the spacing was demented. I don’t get the name of this doctor and I struggle to determine where he is from by his accent. I think he is Easter European but could be wrong. He is very pasty, though, with a pudgy, doughy kind of face and little round glasses. He is also very, very serious. He asks me lots of questions about my condition and reads copious notes that have obviously been made about me. I am sitting there waiting for him to start talking about acupuncture, hydrotherapy and other lovely treatments but he goes for the one I have been hoping won’t feature on the list. The pain psychologist. I once read something about a pain psychologist who worked with a woman and enabled her to visualise her pain as a tiger beneath her bed. In this way she managed to deal with her pain without using so many painkillers and it gave her a sense of control. Damn. This is not what I want. I want someone to DO something to take away my pain, to dunk me in a swimming pool and swish me about a bit or stick pins in me. I don’t want to think about my pain as a bloody tiger. I sigh. At the moment I am seeing a specialist oncology psychologist and cannot, ethically, see two psychologists at the same time. I sense he is keen for me to finish with the caner person and get on with the tiger-taming psychologist. Being examined when you have fibromyalgia is always interesting as doctors always prod you, fully clothes, in order to see which bits hurt. There are a whole raft of points which people without fibromyalgia won’t respond to but people with fibro will yelp at if they are pressed, even lightly. The doctor goes through the obligatory prodding process and says he concurs with the diagnosis but that he sees me as a highly functioning person with fibro. He demonstrates the measure by holding his hands apart, waggling one hand as those who come in on their hands and knees or by wheelchair and waggling the other hand to show where I am. I almost feel embarrassed and rather sorry I am not more disabled. But pain is very much a personal thing and mine is as valid as anyone else’s, even if I am at one end of the spectrum. He is going to wait until I have finished with my cancer psychologist and then will fix me up with one of his own chaps. As I leave, he gives me his hand which is soft and slightly damp. His handshake is not firm and I wonder if I hurt him with mine. If I did, it wasn’t deliberate.

In defiance of all the advice, I go and sit in the tiny cafe and drink a diet Coke and eat a KitKat, surrounded on all sides by people with obvious disabilities. Standing up is the usual trial. My whole body has seized up and I feel about 101 as I creak to my feet. Following the physio’s advice of shuffling my feet about before I stand helps but makes me look bizarre. OK, more bizarre. I make my way back to the tube station slowly and carefully, wondering exactly when that tiger is going to pounce.

Maggie’s Choir

by

Finally, hoping to brighten your Monday morning, here is the Maggie’s Choir in all its glory. It was good to see the film again. It reminded me of what a good time we had had. I wanted to put the film directly into my blog but WordPress wanted to charge me $99 to do this so instead, you’ll have to click    THIS

I hope you enjoy.

Unsuitable bottoms

by

Today is a day for unsuitable bottoms; the kind of clothing you would only wear in the privacy of your own home but not be seen dead in outside. For me, it’s the inevitable tracksuit bottoms as they are comfortable and have a strangely reassuring feel. They mean that, despite their sporty origins, I will not have to stray far from the sofa today which is good, because that’s exactly how I feel.

Yesterday was a good day and I managed to walk 4km without keeling over. With Race For Life looming, I am trying to walk further and further although I know I won’t reach the 10km until the actual day. But today I feel quiet and a little withdrawn so I’m on the sofa wearing unsuitable bottoms and watching a feel-good film about a jockey who has a terrible accident. Or at least, that’s as far as the story has got but I’m sure he must recover or that there will be a life-affirming ending. In the film, someone states that horse riding is the most dangerous sport in the world. I wondered if this was right so I checked online. The list I saw shows cave diving as the most dangerous sport with horse riding coming in at number 9, just ahead of heli skiing. But the thing that surprised me the most was that cheerleading comes in at number 2. Apparently throwing those girls around and waving pom poms is more dangerous than riding a bull or base jumping. Good job I’m staying on the sofa, then.

Something else that ocurred to me the other day was that cats wouldn’t get trodden on so often if they weren’t so competitive and didn’t try to stay in front all the time. Bunty spends a lot of her day trying to predict where I might be going so she can get there ahead of me, as though there is some competition between us. I once saw a film where a man had a cat who would sit on the corner of the road to meet him from work every day. The cat always liked to walk ahead so the man tried walking faster to get ahead. The cat just walked faster and even when the man began running, the cat still wanted to be ahead and ran faster. He had made a film of this contest between man and cat. Cats, of course, are still winning.

Gangsta exams and Tangled Feet

by

Yesterday was a day at the Rarer Cancer Conference. I wanted to go to speak to a patient advocate about the classification of my cancer but while I was there I spied someone who represented an organisation I felt had been rude to me. Some months ago, I emailed the Independent Cancer Patient’s Voice, offering my services and experience in research to see how I could get involved. The response I got back was curt and very dismissive, informing me that I needed to be 2 years post diagnosis before I could be part of their organisation. I mentioned this to one of the organisers who suggested I give what she called ‘positive feedback’ to the woman in question. I waited, like a spider, ready to pounce. At a suitable moment, I nabbed her (she shall remain nameless). May I give you some feedback? ‘Yes’ said with a glower. I explained about the email I had sent. ‘Oh, that’s Macmillan Voices, nothing to do with us’ she said, as though I were a small stupid child. I explained that I was well aware of Macmillan Voices (which, if you mis-type it becomes Macmillan Vices, much more exciting) but that that wasn’t who I meant. I went on to say I had felt quite dismissed by the response I got. ‘Well, people have to be able to hear things which aren’t always nice’ she said, ‘so you have to be 2 years post diagnosis’. I asked whether it would not be better to let the patient decide? ‘No, we have to be sure’ she said, as though 2 years was a magical or well-researched time barrier. ‘We’re not representative, you know’. I couldn’t keep this horrible woman talking any longer. I gave up the idea of asking whether this 2 year rule was evidence based and let her go on her way. Talking to other conference members, she came up to join us, trying to monopolise the conversation by asking about the contents of the smoothies on offer and, I think, to prevent me talking about her. Little did she know I had already completed my character assessment before she joined us. Getting people involved in research is so important and sometimes so very difficult. Although she denied the organisation she was representing was in any way cliquey, I can’t help but feel it is and that it is designed to put off new members who might have new ideas and other ways of doing things. If I had to sum  her up I would say ‘self important’. Probably with a capital S and I.

So, today I go to get my heart checked out following a year of Herceptin. It can do funny things to your heart so they check it every 3 months to make sure it’s still ticking over. The weather is sunny today but the tube is playing up and it takes me an hour and a half to travel from Northfields to Hammersmith. I feel I could have walked at least half way there in that time. Jumping from one tube to another whilst ensuring I get a seat (a very Londoner thing to do), I manage to get to Hammersmith. Walking out of the station I am trapped behind a gaggle of young men who are excited and gesticulating. Unable to get past them, I tune in to their conversation. Walking on tippy toes and talking gansta, they discuss an exam and how they hilariously did lots of loud coughing in it. It’s the sort of tale which would have found sympathy from readers of The Beano but they no doubt feel they are the first students ever to have pulled such a prank. And righteously tough, innit?

Eventually I get to the hospital, find the right department and wait to be seen. Although I am so late, they will still fit me in. I have bad memories of this place, of being seen when I was receiving radiotherapy and chemotherapy together and my skin split open. With agonising deftness, the echocardiogram ultrasound had to be pressed to my skin and it was excrutiating. I think they made up the result that day. But today is a better day and my ejection fraction is 65 which, I am told, is good. Hurrah!

I sidle into Maggies and have a juice and some biscuits whilst reading my book. The tube should sort itself out before I go back. Feeling a little more energetic than I expected, I walk back to Hammersmith and decide to go shopping. In the square by the Lyric theatre, I come upon an alfresco bit of entertainment. Several women with buggies are doing formation dancing to ‘Sweet Child of Mine’ while the assembled sit in deckchairs watching. It is quite surreal but they are clearly having a fabulous time and I stand and watch, smiling. They are called Tangled Feet and very entertaining they are, too. Check them out. http://www.tangledfeet.com/

Image

Image

Image