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.
Today I have plans. Or rather, I have plans for today. Today itself isn’t shaping up in the way I would like. My plans include being a superwoman and sweeping floors, scrubbing the stairs, doing loads of washing, planting seedlings and making a start on dinner. This is before I go for my penultimate dose of Herceptin this afternoon. It may also have included a quick wash of the front windows where Dog likes to rub his wet nose in anticipation of guests or – much, much worse – foxes.
How it actually shapes up is like this. I wake around 8.30 feeling so tired, I don’t even want to get out of bed. I check my phone, drink a cup of coffee, kindly supplied by my resident butler, and read a bit of my book until 9.20. Then I think I really must get up. So I do, dressing carefully so my portacath will be accessible this afternoon and rueing the fact that I don’t have my resident chauffeur today and will make my way to hospital by tube. This isn’t because I don’t have wonderful people I can call on to take me in. It’s just that when I feel this tired, I find conversation exhausting and actively shy away from it. I don’t want to talk on the phone, I don’t want to see anyone, I just want to be left in peace. So then the dilemma is to tolerate physical exhaustion over mental exhaustion. It’s a tough one.
It’s been a good week, though. I have to refer back to my diary for the details because I only have the feeling it’s been a good week rather than the detail of what I did. On Monday, it was the 5th birthday of Maggie’s London. If you don’t know them, take a look http://www.maggiescentres.org/london/introduction because they are a fine charity and have been an absolute blessing to us since I was diagnosed with cancer last March. So, the Maggie’s Choir had its first performance. We are a ramshackle lot. Various ages, various states of decay vying with glamour. Some of us can hold a note, some of us aim to one day. We have a terrific build up and introduction given by Sam, our choirmaster. He gets the audience doing warm-up exercises and everyone is smiling and joining in. We start with Here Comes the Sun, appropriate given that the garden at Maggie’s was sponsored by the family of George Harrison. A spirited rendition of Oo La Ley with audience participation and then we are into the showstopper of Let’s Face the Music and Dance. I’d like to say we brought the house down but people are appreciative and applaud, stamp their feet and whistle. It’s good enough. We eat cake – lots of it – and then drift away in clumps to talk and get to know each other better. A good day.
Tuesday sees me up at the crack of dawn to catch a train at 6.30 to get me to Southampton in time for a 9.30 meeting with researchers looking at genetic testing for breast cancer in young women. It’s very positive to sit in a meeting with people who know Lots of Stuff really well and for them to still respect my opinion as a patient. It’s a long day and I find myself tired but mentally energised.
Wednesday I am talking to the Digital Media team of Macmillan about my experience. Some charity teams don’t get the opportunity to engage with service users much so it’s good to hear things first hand. They are having an away day at an amazing venue in Kennington. It is also home to the London Bee Keepers’ Association and the room has posters of different kinds of bees (including the Mason bee – I am proud). I talk for 45 minutes with a few slides of me with and without hair, including more recent photos of just before my friend Alison and I were told off in the National Portrait Gallery for posing in front of portraits and photographing ourselves. 
The woman in the right of the photograph was just coming to tell us off. They seem to enjoy my talk, even applauding and I want to say “Don’t applaud cancer!” but I suppose it’s me they are applauding, not the disease. They have kindly arranged a taxi to take me to Maggie’s where we have our final choir rehearsal before trooping across to the hospital to surprise visitors by singing around the piano. One of the choir members, Pat, an older lady who makes copious small pencil notes on her word sheets about how she is supposed to sing different sections of the songs, confides she has had a strange day. She tells me she had a shower in the morning, used deodorant and put on fresh clothes but later tells me she thought it had all been ineffective. So she did the whole procedure again but still felt something had gone wrong. She thinks she smells. I tell her if it gets too strong I will move. She also confides she doesn’t know the songs really but sings what she thinks the tune might be. She is an absolute star and I love her.
After embarrassing the Choirmaster and his lovely assistant with cards and gifts to thank them for their time, energy and encouragement, we duly ascend on the cafeteria on the first floor at Charing Cross. People in Starbucks look alarmed as we swarm around the piano, pulling on t-shirts we have been given. Mine makes me look like a sausage in a skin but they don’t have a larger one left. We go through our whole performance with one additional song. A lady with a megaphone in the cafe shouts for us to do more. People join in and wave their arms. They even applaud and passers-by take photos of us on their phones. Someone at the back videos the first song on their phone. And then it’s over. We peel away from the piano, swapping numbers, delaying the end. Some people want to continue the Wednesday afternoon singing sessions without the Choirmaster. It will not happen. The course is finished and we have to accept it. And it was huge fun. We learnt a lot, met new people, smiled and laughed.
And that’s probably why I am so tired today. A good week = a tired me. The sun is shining, though, and even though that highlights Dog’s window activities, I think they will have to be left for another day.
Having had a relaxing weekend, real life is waiting just around the corner like a wet kipper slapped round the face, to jolt me back on my toddler reins. Toddler reins in my attempt to get back to ‘normal’, whatever that is. I have been through my diary like a blitzkreig, cancelling, crossing out and re-arranging dates. If you have made the final cut, you’re doing really well. Even pleasurable and fun events seem too weighty, too burdensome. But something has to stay in the diary so I knock out the slightly less entertaining and keep the better gigs. Everything and anything can bring about a state of panic at the moment, mostly self-induced by being far too optimistic about how much I can take on. At good moments, and it does change moment by moment, I feel I can take on a whole host of challenges. At other times, these fill me with a creeping dread.
I am guessing some people may feel offended by my postponing, cancelling, re-arranging or else by my complaints that I have too much in my diary. Well, who put it there? Yes, I hold my hands up. It was me, not thinking clearly when I added you to my diary. It does not mean I love you any less but just that my head can’t hold enough and my body is too tired. There is a mental, physical and emotional exhaustion that goes with the aftermath of cancer treatment. Beating myself up does no good but does come automatically, somehow.
Leaving Maggie’s after a great singing session this afternoon, I sat on a wall reading and waiting for my lift. A man came stumbling out of the A&E department, shouting loudly and waving his arms about. He caught my eye. “Excuse me, excuse me!” he called as he came crashing towards me. He explained his English was not good and then proceeded to tell me his brother had been taken to hospital in an ambulance but that he wasn’t at this hospital. “He’s not here!” he yelled. “Where is my brother?” He didn’t appear to be asking a rhetorical question and I didn’t know what to answer without getting into a long involved conversation. At this point my lift arrived. I told him I had to go. He asked me for a cigarette but I explained that I didn’t smoke. For a moment he looked at the ground, slumping his shoulders in a defeated way. “Can I have 70p?” he asked. It was such a specific amount I almost gave it to him. What can you do with 70p? You can’t get on a bus with 70p and I doubt you could buy much more than a chocolate bar. Maybe that was what he wanted – a consoling bar of chocolate. I hope he found his brother.
I am becoming new and improved every day. Every day, in every way I am getting better and better. Or something. Today was the acquisition of the much awaited compression sleeve and gauntlet. Mine is a snazzy all-in-one, caramel in colour, naturally, and very tight. It runs the entire length of my arm, from just beneath my arm pit stopping around the knuckles on my left hand. Hand-washing is very difficult. If I ‘get on with’ this one, I can have another one. I can wash it gently but mustn’t leave it to dry on a radiator. After it was fitted, I whipped my tattoo sleeve out of i’s bag and began to put it on. The man who was helping me – I don’t know his exact title – was surprised. “I’ve never seen one of those before” he said. I explained I didn’t want to be controlled by my sleeve but meant to have some fun with it as I have to wear it. He nodded approvingly.
This afternoon was the formation of the new singing group at Maggie’s. It’s only for 4 weeks but I thought it would be fun. An amazing amount of people I had never seen before came and we sat in an awkward L-shaped room while a very nice man put us through our paces. We did breathing exercises, panting. yawning, tapping and clapping. Eventually we separated ourselves into groups – soprano, alto, tenor and men. Our choir master has decided we should sing ‘Here Comes the Sun’ which is fine by me. The problem is, some ladies in the group can’t understand that you should only sing your own part, not the part of every group. It leads to endless confusion when, say, the tenors are singing their part and women from the soprano and alto sections are singing along. I clearly need to be more tolerant and possibly buy some earplugs.
Waiting in the car park for Mark to arrive, a woman I have never met before accosts me. ‘Wasn’t it fun?’ she asks. We discuss what we liked about the afternoon. ‘As soon I saw you come in, I thought “she’ll be a right laugh”‘ she tells me. ‘You came in with your tattoo, chatting with people and I thought you looked amazing’. How fascinating to see onesself through the eyes of others. We discuss our various cancers. Her tumour was 11mm and she had had it removed. She is due to start chemotherapy on Friday. I tell her I had chemotherapy before surgery. ‘Was that to shrink it?’ she asks. I tell her yes. ‘Did it work?’. I tell her it shrunk to 8cm. She looks aghast. ‘8cm? Mine was only 11mm!’ I remind her it’s not competetive cancer. Cancer is cancer is cancer. She tells me her chemotherapy is made from the bark of a tree. With horrible familiarity I know exactly which drug she will be having and, skipping the horrible side-effects, I tell her it will stop her cancer in its tracks. Mark arrives and we part.
Coming home I get to remove my external accoutrements. My prosthesis, my new compression sleeve. The relief of discarding the improvements is immense. The joy of sitting in pyjamas mis-shapen and puffy-armed is huge. I don’t yearn to go to restaurants, clubs, gigs, the cinema or have dinner with friends. I long for the sofa at the end of the day, pyjamas and sheepskin slippers.
Tangling with cancer 