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/