Gangsta exams and Tangled Feet

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/

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Let them eat cake

In an attempt to feel better, fitter, newly-improved and upgraded, I have an appointment for acupuncture at the Haven in Fulham. It is my first appointment and, as Fran is staying, she comes with me on the promise of lunch. We sit in the waiting area drinking coffee and eschewing the healthier-than-thou biscuits. Eventually I am called and ride in the small lift with my acupuncturist. He takes notes and asks lots of questions. What are my overriding concerns? What areas should we concentrate on? I tell him pain, exhaustion, headaches, sleeplessness – there is a whole catalogue but I restrain myself from asking for an upgrade on the basis that he cannot work miracles. He eventually tells me to take my shoes and socks off and I lie down on the treatment couch while he holds my wrists pensively before selecting needles. After inserting a few, he asks some more questions, apparently at random. How is my husband? Do I get nightmares? (These are not connected, I feel) He then inserts more needles – in my wrist, ankles and legs, asking if they feel ‘achey’. I am not sure we are on the same page with this word but I work out he means can I feel the needles are in when he twangs them. The answer is yes. But they still don’t feel achey. He checks my neck and then leaves me to relax while the needles work their magic. I find it strangely soporific, lying harpooned like a minor species of whale. I close my eyes and almost immediately begin those strange daytime dreams that sometimes happen when I’m very tired. After a few minutes, he returns and begins to remove the needles. As I sit up, I tell him I feel quite spaced out but he says this is normal and that I’ll feel drunk and then tired after a bit. On the way out, I make another appointment.

Fran and I decide to walk back from Fulham to Hamersmith station in an effort to boost my walking range. Race For Life is coming up awfully quickly and that 10k target is quite daunting. Fran is already at odds with my pedometer which she thinks wickedly underestimates how far we walk. We find a street map which shows us where we are, being unfamiliar with Fulham, and set off. North End Road is an interesting area, full of market stalls and local, independent shops. We weave our way in and out of charity shops but don’t buy anything. Fran is shortly about to move to Bangkok so buying things is not on her list at all and I don’t see anything I like. We are still not sure what to do about lunch but feel we might see something along the way. Over the road we see a baker’s and cross to examine it further. In the window, a woman stands making falafel at a very impressive rate. They sell samosas, cakes, pastries and lots, lots more. The array is dazzling with cakes of every shade, shape and colour and I know I have to buy one to take back for Mark. Fran doesn’t want a cake, even though some of them are distinctly day-glo, but she is tempted by some enormous savoury pastries. We opt for 2 lamb and vegetable and a spinach and cheese pastry, a huge slab of bread pudding, a bright red strawberry tart and an almond and custard pastry, snowy with icing sugar. I ask the woman if she minds if I take some photos while we are there. She says it is fine but her colleague seems less keen and ducks out of the way of my lens. I send Mark a text to tell him lunch is on the way.

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We wend our way back towards Hammersmith tube, which I am sure has been moved further away from Fulham especially for my walk today, via a small cafe where Fran orders banana cake and I have a slice of lemon cake. They are satisfactory but I feel I could do better with the lemon cake myself. I must get back into the kitchen. I haven’t cooked for such a long time but feel I want to be back, stirring, pouring and creating again. We arrive home with our bags and put the pastries in the oven. When they are hot enough, we whip them out with much salivation from Dog and Mark. They are delicious and I save my crusts for Dog so he can have a treat whilst out on his walk. I may just have to walk back from my next acupuncture appointment…