My week – the one in which my plans go awry

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 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. Image

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.

4 thoughts on “My week – the one in which my plans go awry

  1. Firstly, I think you’ve got your priorities in the correct order… ALWAYS fun first! Who wants to be remembered for keeping their windows clean?

    Secondly, I love love love your photo in the portrait gallery. I could easily be found doing something similar… and equally getting told off. But really, what on earth is their problem with it? FFS! 😮

    And thirdly, the Maggie’s choir sounds fab. Where I volunteer, we’re having a Volunteer Thank You event in June, where we get to spend the morning singing with the Rock Choir. Singing is such a happy, healing thing to do. I might suggest it to our Maggie’s Centre.

    • Ha! Clearly a woman after my own heart. Yes, doing silly things is always the way to go. I am going to go back to childhood, I think, and just enjoy, enjoy, enjoy!

      • Hey Shelley! Guess what? I was at my local Maggie’s Centre last week and someone mentioned there’s a singing group and it was that same afternoon. So I went along and had a fun hour and a half belting out some songs. It’s not quite a choir but I got to sing and it was fun. I thought of you. 🙂 x

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