Getting Lost with Jacky Charles
November 23, 2011 § 2 Comments
One of my many ideas that have come to nothing was to write a novel about a maze. My hero, Jacky Charles, worked as a groundsman for a big estate, a bit like Lower Loxley in The Archers. He had some deep, dark secret and then a woman turned up from his earlier life who knew that deep, dark secret. In the meantime, she had become a born again Christian. She blackmailed Jacky Charles into building a maze in the grounds of the estate, as a kind of homage to the great medieval cathedral labyrinths. It would have ended with Jacky going mad and setting fire to himself in the centre of the maze.
As a result of this nonsense, I have a slight interest in mazes and labyrinths. As you may know, there is a difference. A maze gives you a choice of pathways. Go this way or that. In a labyrinth, on the other hand, there is only one, unambiguous path. The walker follows it to the centre and then out again. There are no decisions to be made.
I was reminded about all this today, walking passed St Martin in the Fields. In the courtyard, people were chalking a labyrinth onto the ground. When it was ready, walkers started following its path, only really, really slowly. It was part of an event called Just this Day, about being silent.
I’m not particularly in favour of silence. I know many wise voices speak up on behalf of quiet reflection, but stepping out of the usual to celebrate silence and stillness – mmm, I’m not sure. I probably should be doing that more, thinking about life, the future, things in general but I’m not, not really. Partly, it’s because my brain feels like it’s wrapped in clingfilm, but partly it seems like tempting fate to even begin that kind of contemplation. Hence, I find myself watching reruns of Desperate Housewives and embarking on the box set of Murder One instead of thinking how I can carve a better, more worthy life from this experience. To be honest, just being here seems quite ambitious.
So here’s the rather lame, bringing this all together finale.
It’s a bit like I’m in a labyrinth right now – one path, get to the middle, get to the end. There aren’t a lot of choices really. Which is why I’ve always preferred mazes. More human, more like I can make my own mistakes rather than living by some preordained genetic slight of hand.
That didn’t really work, did it? Ah well. Here’s a nice picture of a maze.
We do like a day out
November 21, 2011 § 3 Comments
A couple of people have asked me what it’s like to have chemotherapy. They are not talking about the side effects of which I’ve discussed/droned on about previously in this blog and am likely to do so again. Instead, they are asking about the process so here’s a little “day in the life of” for chemo days. Be warned: it’s a bit dull and there isn’t much art.
I am having six doses over eighteen weeks, so once every three weeks. My fourth session was last Friday. The key is the blood count. Either the day before or that morning, I have a blood test to check that my white blood cells have sufficiently recovered from the last dose. There is concern that I’m not left too vulnerable to infection, and once my treatment had to be delayed until said blood cells had reproduced sufficiently to protect me from unnamed enemies.
Assuming all is well, I then wait around while the drugs are prepared. This takes an hour or so because, understandable, the NHS doesn’t want to waste money on drugs that are not going to be used. If I’m with my friend, we usually take a spin round the neighbourhood while we wait: have a coffee, buy M&S groceries for the St Paul’s protest, see if there’s anything happening at the Central Criminal Court. Once we visited the Postman’s Park, and looked at the plaques to commemorate people who died saving others. Here are a couple.
Back at Barts, I am seated in a day ward. There are about eight chairs in a ward, each with a less comfortable guest seat. The chemo chairs are a bit like those the fat people float about on in Wall-E. A nurse then injects a line into my hand through which, over the next couple of hours, anti-sickness medicines, plus three different chemo drugs and a number of flushes are then pumped. One of the drugs looks like this.
I don’t really feel anything as the drugs are going in. Sometimes they are a bit cold.
As the time goes by, I chat to my friend, who does like a day out. Sometimes we talk to other patients and their companions. There is discussion of wigs, of course, all of us saying that we never could tell – which is usually true – and of journeys. Most people have come from miles away – a two and a half hour journey from Brighton, for example. I feel somewhat guilty that I am just three underground stops away. Being wary of hearing too much about what other people are going through, I try to avoid talk of treatments. I really don’t want to hear about anyone who has secondary cancers or whose treatment is not going splendidly. But sometimes you can’t help it. On Friday, I chatted to two women who do have secondary cancers, which was not ideal, but, on the other hand, they were both in their 70s and had been cancer free for fourteen and twenty-six years, the latter of which seems pretty good to me. (I don’t know how a cancer is even a secondary cancer after 26 years but I’m not ready to ask those kind of questions yet.) This is one of the reasons why I need my trusty friend with me. She is very good at telling me not to build my story onto the stories of people I have never met before and know nothing about, which is a massive temptation.
While we chat, the NHS goes about it’s business brilliantly. On Friday, I was offered coffee and biscuits, followed by sandwiches and fruit, plus a volunteer trolley with newspapers and fancy treats. The nurses are amazing. I know this is a horrible cliche but it’s true. The time before, the lovely Finnish nurse spent ten minutes discussing the pros and cons of invading Finland. Who has time for that? Twice the hospital social worker has been round, both times talking to older gentlemen who were living alone and in need of some additional support. I don’t know how well that support gets delivered but, considering something really horrible is happening to everyone in those chairs, there is a gentle, we’ll get through this, atmosphere.
I leave with a bucketful of medication to help with side effects, and afterwards, my pee is red for a while.
Scars, arms and saying thank you
November 14, 2011 § 3 Comments
I have matching scars under my arms. The first has been there since I was about ten. Clare McMullen and I invented a game where we looked after leaves. We made them beds in match boxes and polished them with milk. We had toys and no reason to be looking after leaves like babies, but still, this was the game. To gather a new leaf, I was climbing on some railings in the forbidden zone at the edge of our playground, when I slipped and the pointed end of the rail went into my arm-pit. There was lots of blood and general hysteria. I remember putting my hand under my arm and feeling a hole. Our headmaster, the perpetually cross Mr Roberts, put me in his VW camper van and drove me to the local hospital, where I was stitched up, given a tetanus jab and provided with an odd string-vest. Mum came to meet me and I got an Orange Maid ice lolly on the way home. For a couple of weeks, I was something of a star at school. I had to stand up in assembly, Mr Roberts using me as an example of what can happen if you break the rules, but that only added to the excitement of the whole incident. My mum received phone calls from other parents who had heard ever more exaggerated and fantastic accounts of the incident: my arm had been severed; the railing had gone right though my arm pit so that I was left dangling. In fact, it was all rather straightforward. I returned a couple of weeks later to have the stitches removed. I think I kept them.
Now I have a scar under my other arm. This is where the surgeon removed some sample lymph nodes during the lumpectomy I had in the summer. Much less fun.
Last week, I went to the Welcome Collection on Euston Road to see Infinitas Gracias: Mexican miracle paintings. This is an exhibition of small paintings, commissioned by families or individuals to thank saints for helping them through bad times, or, as the blurb says: Mexican votives are small paintings, usually executed on tin roof tiles or small plaques, depicting the moment of personal humility when an individual asks a saint for help and is delivered from disaster and sometimes death. The paintings cover all kinds of dramas, from lightning strikes to gunfights, motor accidents to false imprisonment, and, of course, ill-health.
It made me think about being grateful. If I get through all this chemo and surgery and go on to live a reasonably long life, I think I’ll be grateful everyday, although I suppose, as time goes on, I will stop being grateful everyday and just be grateful every other day, such is the way we forget. I hadn’t thought about the leaves and the railings and Mr Robert’s VW van for an age, and I can’t say I’ve ever been conscious of being grateful for that safe delivery.
I know there are quite a few people praying for me and, to be honest, while I am nothing but skeptical about the power of saints or God to save lives, there is a little bit of me, the “whatever it takes” part, which is thankful. The fact that these disasters and illnesses happen in the first place seems so unfair and random that choosing to thank someone equally random for getting you through it, even if it is a long dead man who helped animals, doesn’t seem so odd to me.
A bit too soon to commission my own tile but fingers crossed (ah, see how far I’ve some from similar superstition), I’ll be looking for a willing artist in the not to distant future. And rather than a saint, mine will feature surgeons and breast care nurses and people of science who are even now working their own miracles – well, touch wood, etc.
Take a look at some more of these rather wonderful votive thank yous and I think you will see what I mean.
I didn’t know that happened. Well, now you do. No.1: Sore Tongue
November 4, 2011 § 3 Comments
Without wanting to stray into the area of too much information, I have been told that I need to say more about things that are happening to my body. I’ve avoided this a bit because I don’t want this blog to be a big cancer moan. On the other hand, two people who have been really helpful to me, Gail and Cheryl, are women who have been through chemo themselves and who have been generous in offering reassurance when I send yet another frantic text outlining some new symptom. “Oh yes,” they say. “That happened to me,” and I calm down. As Gail said to me, having chemo gives you a grounding in health issues you never imagined to be relevant.
So the following is offered in the spirit of: 1. I didn’t know that happened, and 2. Well, now you do.
In the previous post I mentioned having thrush on my tongue. The problem with chemo is that it doesn’t know just to attack the bad multiplying cells. Instead, like a child who’s had too many fizzy drinks, it runs rampant, having a go at pretty much anything. In particular, it likes fast growing cells – good, in that we want it to nut any quickly developing bits of cancer, but bad, in that this is what causes your hair to fall out, for example.
Back to my mouth. In case you don’t know, oral thrush is an infection of a yeast fungus called Candida albicans in the mucous membranes of the mouth. It doesn’t become a problem until there’s a change in the chemistry of the oral cavity that favours candida over the other micro-organisms that are present and, wouldn’t you know it, chemo prompts those changes. Bugger. Babies and denture wearing folk are also prone to getting it. The result – an ugly white sludge. It feels as if someone has taken a razor to the top layer of my tongue and then tried to sandpaper the surface. Rather spitefully, that same person has then sprinkled a nasty tasting something on to what remains.
The GP assures me that oral thrush is actually very common and seemed surprised that I hadn’t had it before, so maybe, after all, I have lived a very sheltered life. He had given me an oral suspension, which I have to leave on my tongue several times a day and not talk for a while. Very much hoping this will do the trick.
Other mouth issues can include ulcer like sores, a few of which I had during the first lot of treatment but haven’t had since, and a dry mouth. The lovely Gail told me she was given artificial saliva. Who knew? I also suspect I am drinking way too much orange and grapefruit juice because the sharp flavour cuts through the thrush nastiness, hence storing up a host of teeth issues. Hey ho! One thing at a time.
And, as you know, I like to give you a bit of art. So here is Robert Maplethorpe’s Clothespinned Mouth 1978, from the Tate’s collection. Apparently, it is more about sado-masochistic fetishes, the S&M scene of the 1970s and Mapplethorpe’s strict Catholic upbringing than it is about oral thrush, but it works for me.
Thoughts on endurance following a visit to Tate Britain
November 3, 2011 § 4 Comments
This is pretty much how I’ve been feeling for the last week (Woman with an Arm Tattoo, 1996, Lucian Freud). I had my third chemo last Friday and this time has been somewhat rougher, a bit like a poisonous marshmallow has been pumped into my head and is expanding to fill all possible brain space. For several days, I have sat on the sofa for eight straight hours, watching episodes of Poirot and House of Elliot. I have thrush on my tongue, queasy rumbling in my tummy and would wrestle your grandmother to the floor for a whole night’s sleep. (Mr Davies says I have to say it like it is, and not always be, “Oh, yes, it’s not that bad really.” Fair enough.)
But today I am starting to feel better, at bit more like this:
I had a nice cup of coffee with Mr Fairhurst this morning and discussed the epic saga that is Australian Masterchef. Then I wandered around Tate Britain, dodging school parties, art students and the elderly, the only people in art galleries at ten on a weekday. I recommend the Don McCullin photographs, Mark Wallinger’s Threshold to the Kingdom, and Peter Doig’s Echo Lake. Then I had to have a sit down.
Chemo is a bit like having a baby. You have just enough time to forget how awful it is before they shoot you up again. I assume this is the only way to ensure that anyone comes back for another go. In the words of Harry Venn in the recent BBC drama, Hidden: “There are some things you just have to see through to the end. That’s all you can do.” For sure, this is one of those things and times and while part of me thinks no one has ever had it so bad, I also know that isn’t true. Only this morning, I found myself quoting Harry to Rex300, who would have given anything – ANYTHING – to not have to go swimming with the school today. I don’t think I felt any worse than he did. Rex3000 hates swimming lessons with the kind of immediate dread and passion which I haven’t felt since childhood, until that is, this treatment. He clearly thought I was bonkers, but it is what awful swimming lessons teach us, I suppose. Shouty teachers, shivering at the edge of the pool, and not enough time to do up a top button and tie a tie, all to be endured.
And when we’re all through all this enduring, I’m very hoping it will feel like this: