Tag Archives: Macmillan

When Granny tried to pick up Bob’s friend in the pub

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My brain tells me that if I am officially ‘better’ on paper then I should feel better. The fact that I feel as tired as before and now have a lurking pain beneath my ribs on the right side (not that there’s a wrong side) is just plain wrong but there you go; that’s life. This week I have an appointment with Aaron, my Macmillan trainer who comes to give me a pedometer. After a walk to Gibraltar Point, it’s a bit depressing to see I have only walked 635 steps. But I know I’m not really well. I feel cold all day and when I go to bed early, find my temperature is over 38.0 which officially means a call to the hospital. I don’t feel in an obliging mood, though, so decide to watch something trashy while I fall asleep and when I wake in the night, my temperature has dropped so I am OK. My temperature varies a lot, though. Officially, I am supposed to call the hospital if it drops below 36.0 or over 37.5 but that’s a really narrow band and my temperature often drops quite low, even if I’m feeling perfectly well. I think I’m generally a low temperature person. And it’s disappointing about the pedometer, too. Aaron tells me one of his clients straps her to one of her cats if she feels a bit down and enjoys reading the huge number of steps at the end of the day. I think I might try it with one of the animals here on the homestead. If only steps were as easy to do as writing words, I would be a marathon runner. I have a phone call from the lovely Cathy at St Barnabas Hospice in Louth who is going to refer me to the physiotherapist to see if she can help with my breathing and will also make an appointment for some sessions of Reiki which I am really looking forward to. It’s lovely to hear her tell me it will help with my pain and also relax me. I know about the relaxation part from previous experience and I have never tried it for pain before but I am optimistic.

At some point last week we go and buy some furniture. One of us is more reluctant than the other. Yes, you’ve guessed right! Mr Mason is not at all keen but I know where I want to buy it from and they have a sale on and we can go mid-week so we go in and find something we like. Hurrah! Even better than that, it is in the clearance section as it has been made to order and then cancelled. Once in the shop, of course, Mr Mason gets very enthusiastic over the purchase of sitting room furniture, especially 2 chairs which are about a chair and a  half in size. I say they are a person and a dog in size which puts him off slightly. In the end we choose something simpler and I decide to buy some spare covers there and then so we will all be sorted. I think this was after we see the oncologist but time is so smudged in my mind that it all melts into one sticky pool of non-remembrance so let’s just say that’s when it was. No-one really cares. I am always fascinated by (usually) couples who are telling an anecdote and then get hung up on a time, date, place or whatever, even though it is irrelevant to the story. “it was on Thursday” “No, it was Wednesday”. “No, I remember it was Thursday because I went to collect the kids from Mum’s that day” “No, that was last week, don’t you remember? I know it was Wednesday because Bob at work was telling me this story about a bloke he knows at the pub and I told you when I got  home and you thought it was hilarious”. “Oh, was that the story about the granny who tried to pick him up? I’m sure that was Friday, you know”. And so on it goes. So maybe it was after the oncologist, maybe it wasn’t and now we’ll never know the story of when a granny tried to pick up Bob’s friend in the pub.

The dogs are getting along better this week. Dog is still taking pride in getting the whole of Lark’s head in his mouth but she is starting to object and is doing more of the chasing. Her best defence is diving into any handy bush or hedge where he can’t get her and from there she can plan her next move in the game. She is keen on moving items of clothing (so embarrassing to find underwear strewn on the stairs – 3 odd socks and a pair of Mr Mason’s pants making it look like the world’s worst swinger’s party If we did swingers parties, we would do them like Heineken, of course) and it’s hard to find a pair of slippers. One is probably languishing in the garden and the other in her crate along with sundry stolen items. We were told before we moved that swingers have pampas grass in their front gardens as a sign to other swingers. I suppose they just knock on each other’s doors saying “Hello, I’m a swinger, too. Can I have a cup of tea?” or something. Imagine our distress to discover not only do we have pampas grass on the property but that it is in the back garden. What does that say in the Swingers’ handbook, I wonder? On second thoughts, I think I would rather not know.

So the music constantly playing in my head is this, of course.Sit back and enjoy Yakkety Sax by the great Boots Randolph.

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My week – the one in which my plans go awry

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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. 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.