August 2, 2012 § 6 Comments
I know a few folk have asked, usually via Russell, what’s going on with me, and apologies for not updating this blog for sometime. Here are some thoughts.
Firstly, the end of July marked a year since I was diagnosed. I marked it by trying not to mark it. We were in lovely Tenby in South Wales, enjoying perhaps the only week of real sunshine we may see this summer. Lucky us. We played on the beach with the amazing Barnes family and I felt glad that it was this year and not last.
Two days ago, Russell reminded me that a year ago on that day we all cycled to the Design Museum. I remember that day as it was in front of the museum, by the side of the Thames, that I told Arthur about the cancer. He took it well, asked me if I would die, and we joked about, if I did, how he and his dad could eat takeaways every day and he’d probably never be nagged to clean his teeth or wear a bicycle helmet. I then ate a huge portion of macaroni cheese, the relief at having told him suddenly leaving me with a huge appetite.
So, that was all a year ago. I had my final chemo at the end of December, and then my double mastectomy with reconstruction in Feburary. Went back to work in April. Work folk have been lovely, very patient and caring, but letting me get on with things too. I couldn’t have asked for more.
I have hair again, which is not to be taken for granted. It’s odd and different, curly. Who knew? I did the Nightrider cycle ride in June (55 miles overnight round London). I see a gentlemen from Muddly Plimsoles for some outdoor training once a week and have started some yoga with the lovely Kate Walker. All text book keeping busy, I think you’ll agree.
I have check ups every few months. My oncologist tells me that “we have to find a way to help you get on with the rest of your life” which I take as reasonably optimistic. I am finding this bit something of a challenge though. I seem to have a bunch of ongoing aches and pains, which could be anything from being 46, to early menopause, to having had major surgery and chemo. Of course, it’s only too easy to slip into worrying that all this is something more, even when the doctor tells me otherwise. I suspect this is pretty much what every post-cancer patient goes through. I can’t read or watch anything about cancer or illness in general, just don’t want to put myself in the way of more things to worry about. My lovely friend, Fran, in the USA, who is going through exactly the same thing as me (awful coincidence) posted a reference to an article in the NY Times about, well, I’m not entirely sure what it was about as I couldn’t bring myself to read it. (However she also wrote a lovely post about us on her blog.)
I am seeing a CBT therapist to help me with some of this, which is proving hard work. Apparently, its not about getting rid of worry, which is impossible, but more learning to get some perspective, or, as she put it, “turning down the radio which is always going on in your head, otherwise that sound will prevent you from living well.” There’s lots of talk about “living well”, and separating thoughts and feelings. Not sure I quite get that yet. And values. What are the values that I want to drive my life? It feels a bit like I’m being asked to put together a mission statement for my own life, something that hasn’t seemed necessary before. Work hardish, be nice, never vote Tory. Is that enough?
It sounds a bit lame, but I’m trying to take inspiration from the Olympics, or more precisely from the athletes and particularly from those who don’t win. Years and years of work to just take part, often overcoming all kinds of rubbish to get where they are which is not, after all, being the best in the world. I’m not sure what all that means for me. It isn’t the same. I’m a middle aged, unfit woman, and they are not. But there’s something, and being inspired is always good, no matter how remote the real connection.
March 19, 2012 § 5 Comments
I’ve never considered myself to be a superstitious person. All that about umbrellas being put up indoors or smashed mirrors and seven years – clearly nonsense. My mum will never put new shoes on a table. What an earth can that be about?
But that was before. Nowadays, I am highly superstitious. It’s way too risky to say, “Yes, I feel better.” That’s like tempting all the illness, bad luck fates that ever were. If I were religious, it would be different. I could say something like, “Yes, I feel better, thanks be to God”. Instead, I have to say, “Yes, fingers crossed, I’m continuing to improve,” or, more pathetically still, “Hopefully, I will be feeling better by then.” I’m not above touching wood, for goodness sake. There have to be some words or a gesture to support the feeling better/things might be alright line. (See, I can’t even comfortable say that things “will” be alright; they only “might” be alright – hopefully, fingers crossed, please God, etc. [the “please God” isn’t really something I can use but I’m more than happy for anyone else to have a go with that.])
The difficulty becomes more acute when planning for the future. Doing anything that involves assuming I might be fit and well in a month, in the summer, beyond, seems like taunting those same illness fates. I haven’t bought any new clothes, for example, and I’m finding it hard to think about getting fit again – that’s a huge investment in the future, after all. Today, I couldn’t bring myself to post the deposit for our summer holiday (Russell offered to do it, bless him). I even hesitated to renew the Family Railcard.
Is this all a sign that I am slowly going bonkers? If the cancer is coming back, I think medical opinion would suggest that it’s doing so regardless of whether we have an up to date Family Railcard. And I’m not proud of behaving with no more enlightenment than a medieval peasant, thinking I can control this by not buying a new pair of jeans (or whatever the medieval equivalent was, a new long frock, presumably). I suppose it’s about control. None of this is in my control, after all or the bits I could control, I’ve done. So now, after all the science, it is rather down to luck, which is just superstition in another guise.
So fingers cross people, fingers crossed.
March 10, 2012 § 3 Comments
… here is our work to bring the ancient and long disappeared Motte and Bailey castle at Thetford back to life. We are particularly proud of the church and forest details. (When I say “we” I mean Arthur of course. It would be madness to think that a parent would sit alone in their kitchen, making small cardboard houses and sticking cocktail sticks together to make an authentic palisade.)
March 10, 2012 § 5 Comments
Well, a month and a bit after the last post, here I am. The operation is all done. I have new boobs – or to be more precise, newly filled boobs – and a big scar across my stomach to mark where the new filling came from. (Too much detail? Apologies if so.) Towards the end of the day, I walk like Julie Walters’ Mrs Overall, but mostly I’m upright. It all feels a tad weird and not quite me yet but I can sleep on my side and load a dishwasher so we’re almost there.
Here are some things to note if you ever need to get your breasts replaced by your tummy.
1. Spend time finding a soft bra you can actually get yourself into post surgery. No one would let me sit up until I had one and by day three, sitting up is pretty much all you can think about. They talk of a soft, front fastening bra but it turns out this isn’t so easy to get hold of. In the end, I could raise my arms and get a Sloggi top over my head but if you can’t, the Cotton Comfy Bra (advertised in Sunday papers) might be a good place to start. I haven’t seen one of these but the picture in the advert looks appropriate. Or you could try here.
2. Don’t necessarily believe your surgeons when they tell you ten hours. My surgery took 17 hours – yes, people, really. Apparently, nothing went wrong, but they couldn’t all get round the table. Not so bad for me, but horrible for Russell and my mum who were at the end of the phone, wondering why it was all taking an extra seven hours.
3. Be ready for the hideous hot blanket. After four days wrapped an air-heated cover, with the noise of the pump and liberal quantities of morphine for the pain – well, let’s just say I wasn’t in my usual mind. The heated blanket is to keep the blood vessels as warm and wide as possible in order to give the blood supply to the transplanted tissue the best chance of working. It all makes sense now but at the time I wasn’t quite so rational.
4. You might swell up. I could only really see my arms and feet, which were enormous, like the limbs of the people in Wall-e. My head was huge too only my visitors were too kind to say so. I think this is to do with fluid retention but in my arm, it also felt like my veins were saying, “Enough, no more.” And fair enough.
5. Take something with you that smells nice. My friend brought me some Jo Malone perfume and lovely it was too.
6. NHS hospital food – ok, not so bad except you really have to get to grips with the ordering. Order every individual thing you want. Don’t assume anything comes with anything else. My example: I asked for a jacket potato, and that’s what I got. A single potato – no filling, no nothing, just a potato.
7. Take in audio books. You won’t have the energy to read or even watch anything, but listening is possible. They helped me to sleep too.
8. Coming home is good, but be prepared to feel awful. No one really warned me about post-operative depression, which I now realise is pretty common. And for me, this was on top of finishing chemo and trying to come to terms with “getting on with life.” So, fair to say that getting over the operation has been harder than I thought, which is one of the reasons I haven’t been writing.
Actually, it’s not so much been the surgery as the whole damn business. Being stuck in hospital and then largely stuck on the sofa gives a girl way too much time to brood on the “what ifs” – what if I’ve been through all this and still it isn’t enough? Of course, this way madness lies. Hopefully (how weak that word sounds), it is enough and, if it isn’t, well I don’t want to have spent the intervening time behaving like a crazy person. I know this in the sensible bit of me, but not so much in the other “bloody hell, what the hell!” bit of me.
However, today I have been building a motte and bailey castle with my son and haven’t been thinking about cancer every minute, so I’m seeing all that as progress. I’m looking to moving from this:
through a bit of this:
January 30, 2012 § 1 Comment
Let’s get the business out of the way first. For those of you still with this saga, my operation is on February 8th. Soon, I know. I’ll probably be in hospital for about a week. According to the nurse at my pre-op meeting, it’s pretty dependent on drains, something about needing to be draining at less than 30mm a day before they will let you out. And I’ll have four of them.
In the meantime, this morning I went to see the ‘David Hockney: A Bigger Picture,’ at the Royal Academy. I had planned to go with a friend of my mother’s who is a Friend of the RA. Unfortunately, her husband was unwell, so I went alone, but thanks to her for the ticket because the queue was huge.
Here, in the style to which you are now accustomed, are some unrelated thoughts.
1. The RA is not doing well in terms of attracting a culturally diverse group of visitors. The air was heavy with a sense of entitlement, people complaining because although they had arrived before the gallery actually opened, they had to wait. “But we have tickets.” On the other hand, it was completely packed out so I can only assume the RA knows exactly what it’s doing.
2. On the way to the RA, I walked passed the National Gallery, where the queue for the Leonardo da Vinci exhibition stretched the length of Trafalger Square. Word in the RA queue was that people are arriving at the National Gallery at 4am in order to get one of the few on the door tickets. The line at the Royal Academy was none to shabby either. I’m not sure what I make of all this. Art as the new stand up comedy as the new rock and roll. I suppose it’s good, except that the only people who have time and money to give to all this queuing and waiting are the relatively wealthy retired and the formally sick who are spinning it out.
3. As you probably know and in the words of the RA, “‘David Hockney: A Bigger Picture’ spans a 50 year period to demonstrate Hockney’s long exploration and fascination with the depiction of landscape.” There are loads of pictures; I mean really, a lot, and many of the same view but painted at different times of the year. The countryside of East Yorkshire and particularly, Woldgate Wood, feature heavily.
This kind of thing. When you see this on a large scale, with many, many versions, it’s kind of impressive.
It’s also optimistic. Can paintings be optimistic? (The show includes paintings, but also film and prints from pictures made on an ipad.) Initially, the colours and size of the pictures are cheering. Then there is something about being the scale of the pictures that makes you feel like you want to get out and be in nature. I’m not a regular tramper through the fields but perhaps because, one way or another, I’ve been shut up for most of the winter, there was something very appealing about Hockey’s multicoloured woods and landscapes. Even I feel like a nice walk in the countryside wouldn’t go amiss. Maybe there is also a sense of health and vigor in these works, to do with the colours and their boldness that is appealing. I’ll take a bit of that please.
And then I find something hopeful in returning again and again to the same place, painting, drawing or filming it at all times of the year (the films are great, by the way). One of the things I’m finding challenging at the moment is having faith in the future. I know from speaking with other women who’ve been through this breast cancer malarky that this is pretty standard. Looking at Woldgate Woods or Three Trees near Thixendale through the seasons is encouraging. It’s nice to see the year chopped up like this. It reminded me to use the seasons to measure time and progress, that it’s ok to divide up the year like this and that a spring, a summer, an autumn and a winter will make up a whole year.
January 20, 2012 § 3 Comments
I’ve changed my mind. Those of you still keeping up with the saga that is the rebuilding of my breasts are probably rolling your eyes in weary desperation. I know. I’m sorry. I won’t go through the whys and wherefores behind this change of mind. Suffice to say, I was sent away to think again, talked to more people, including people who actually know something (i.e. surgeons, a clinical psychologist who works in the plastic surgery team, as well as more people who have had the operation). I even got to feel someone’s implant (thank you). Anyway, there we are. Some time towards the end of February, I’ll have new boobs made from, well, myself.
During a visit to Tate Modern this week, I came across this picture by the Russian painter and designer, Natalya Goncharova. It shows three young women. OK, so the “young” bit doesn’t really work, but I have felt a bit like this during the decision making process – I’m in the middle, looking first to one possible version of myself, then the other way, to another.
The process of making this decision has seemed tortuous. In part, I think it’s because, given everything else that’s happened, it seems a bit trivial. Does it really matter how my new breasts are constructed so long as I can steer clear of any future cancer? Then there’s the whole problem of making decisions about things you can only know so much about. I can do all the research in the world but in the end, none of it really tells me how it will be for me.
It’s tempting to think this is a situation unique to me, that everyone else has confidence in the future and is not worrying day to day what will happen next. And, to some extent that is true. It’s a matter of survival. We can’t be getting up every morning, worrying about what will happen in the next few hours, days, weeks. If we think about it, we know horrible things are all around us, waiting to jump in and shake up our peace of mind. It’s just that mostly – and thank goodness – we don’t examine all those possibilities, all the time. In making a more long term decision regarding my reconstruction – the general feeling seems to be more pain now for more gain later – I am accepting that there may well be a future which may not involve worrying every day about, well, the future.
Also at Tate Modern, I looked at Bridget Riley’s work, under the heading, State of Flux, and, in my rather vague way, was reminded of some of this. The Tate says that, “her work focuses on the energetic encounter between stability and instability in pictorial forms. While her paintings are abstract, they are intimately concerned with how we look at the world.” Bridget Riley has described her use of colour as close “to our experience of the real world. Unstable and incalculable, it is also rich and comforting”. I suspect cancer, and probably other illnesses too, leave everyone affected forever a bit less stable. The hope has to be that the rich and comforting bits are still there somewhere – in the love of family, the support of friends, the care of amazing medical folk, the existence of socialised medicine, the possibility of using other bits of myself to rebuild me, the help of people I’ve never met before but who have been through this themselves and are prepared to share that experience with me. All that is pretty rich and comforting.
And here’s a Bridget Riley that illustrates all that. You should see it for yourself though.
January 11, 2012 § 3 Comments
This week, I have been mostly thinking about a) Postmodernism, and b) how to rebuild my chest, and c) The Death of King Arthur. The following is about all three and concludes with a very poor and rather predictable attempt to link these things together. I will stop doing this soon as I know it’s getting dull. Not everything is linked and certainly not to stupid old breast cancer.
Actually, I haven’t been thinking about Postmodernism too much. I did go to the V&A’s exhibition, where I learned “postmodernism was an unstable mix of the theatrical and theoretical,” that the “postmodern object seemed to come from a dystopian and far-from-perfect future,” and that “we can learn a lot from postmodernism’s fatal encounter with money.” There were some nice chairs, a great explanation of that amazing photo of Grace Jones (which reveals her to be more like the rest of us than you might have imagined) and a whole bunch of “remember that” album covers. (If you’re interested, hurry along. It ends January 15th.)
I’ll return to rebuilding my chest.
Simon Armitage has translated the anonymous medieval poem, The Alliterative Morte Arthur and this week he was at the British Library, reading from and talking about his work, The Death of King Arthur.
I like Mr Armitage. He seems serious but also like someone who would fetch the fish and chips. I’m not a big fan of alliterative verse, but I enjoyed hearing him read and thinking about all that Arthur business again – battle, betrayal, friendship, ogres, the usual.
To be honest, though, it’s the rebuilding bit which has really been on my mind. In brief, because I have the inherited BRACA1 gene, I am having a preventative double mastectomy, together with reconstruction. If I haven’t polled you yet as to whether you’d have implants or an enormous tummy tissue transfer, you’re one of the lucky ones. I’ve been forcing people all over the show to have an opinion on this, whether they want to or not. Apologies for that. Probably some of you would rather not have discussed my future breasts over tea and scones at one of Britain’s top museums. However, after much to-ing and fro-ing, gathering of opinions, experiences, culminating in a long discussion with the very patient surgeon yesterday (“Ooh the blood vessels in the right side of your stomach are wonderful; the one on your left side – mmm, a bit ropey”), for those still with this saga (and I do appreciate that you all have lives and other things to think about than my chest), I’ve rejected the eleven hour surgery involving a whole other area of my body, together with the side benefit of a tummy tuck, in favour of implants, of the non-french, non-mattress-grade quality, I am assured.
And, for want of anything better to do, here are some ways of wrapping up these three things.
1. Breast cancer is very postmodern – “a dystopian and far-from-perfect future.” The double mastectomy feels more like it might provide a way to return to the order of modernism – opening “a window onto a new world,” as the V&A folk might say, something more progressive. At the very least, I’m hoping my surgeon will be fully modernist, demonstrating a “machine-like perfection.”
2.The Death of King Arthur starts with the Knights of the Round Table celebrating Christmas. Many of the legends, including that of Sir Gawain (also translated by Simon Armitage) which begins with a News Year’s Eve feast, open with a general scene of merriment and happiness. Things are good. There is order. The story only beings when something or someone comes to disrupt this order. In the case of Sir Gawain, it’s the Green Knight; in The Death of King Arthur, it’s an emissary from Rome. I’m thinking that breast cancer is a bit like that bloody emissary or the Green Knight. You’re just enjoying a quiet revel with your knightly chums, when wham, bam, there you are, all challenged and miserable. No one invited these guys in. They just turn up and expect a person to deal with them.
3. Simon Armitage talked about Lady Fortune and her wheel. King Arthur, with this military victories and his chivalric codes, his gang of knights and his fine round table, is a the top of that wheel. Of course, being at the top means there is really only one way to go – down. The Death of King Arthur is the story of that decline. I am very much hoping it works the other way too. If you’re at the bottom of Lady Fortune’s wheel, surely, in the words of Yazz the only way is up.
January 5, 2012 § 5 Comments
This isn’t to do with how fed up I am, or about my breasts, or about the sensibilities of sick people. (Hurrah, I hear you shout. About bloody time.) Yes, well, all that will be back shortly, I have no doubt. In the meantime, my friend, Sandra Deeble, and I have produced a newspaper of short stories. Seven on Austerity came after a moaning session at a pub, with both of us complaining about how unlucky we were never to get anything published (not that we weren’t good enough, of course). Anyway, the result was to put out something ourselves. Seven on Austerity includes submissions not just from Sandra and I, but also from some of our writing friends. My lovely nephew, Mike Howard, did some great design for us and the good folk at Newspaper Club printed it.
Let me know if you would like a copy. It’s free, while stocks last. Just send me your address.
And here’s a picture. It’s not all about pigs, by the way.
December 16, 2011 § 2 Comments
The time has come to a) examine breasts, and b) return to art.
If you have been following me on twitter, you may know that I have been consulting surgeons about having a bilateral mastectomy, followed by reconstruction. This is because my breast cancer is the result of me being a carrier of the inherited BRACA1 gene. The geneticist from Great Ormond Street tells me that having this gene meant that I had an eighty percent chance of developing breast cancer over the course of my life – yes, bloody hell, eighty percent. I still have a fifty percent chance of developing a brand new tumor. Not being that keen to repeat the experience, I am opting to have both breasts removed and replaced either by implants or tissue from my stomach.
Not surprisingly therefore, breasts have been on my mind, so to speak. Here are some thoughts, illustrated by work I have shamelessly raided from the Tate’s 20th Century collection. (Apologies to them.)
1. Vanessa Bell, Nude circa 1922-3
I like this because the model looks like a normal woman (i.e. me). She’s also a bit lob-sided, which apparently is usual. One of the problems for a surgeon undertaking reconstruction on a single breast is matching its size to the remaining one. My file at the hospital is full of sketches and measurements, although having both done at once makes this mismatching less of an issue. I also sympathise with the general fed-up look of this woman.
2. John Currin, The Wizard circa 1994
I’m not entirely sure what is going on here, but it reminded me of my many examinations (and yes, I usually look like the lady here). Surgeons do a lot of looking and weighing up. And, while my science friends will reject this, they are something like modern-day wizards. The options I am being given are pretty damn amazing.
3. Mark Gertler, Queen of Sheba 1922
One of the options for reconstruction is to take tissue from the stomach and reallocate it. This would be an eleven hour operation, involving three consultants. Blimey. You have to have enough of a stomach to do this, so for once the larger, pie-eating woman comes into her own. The Queen of Sheba would have been a good candidate.
4. Hans Bellmer, The Doll 1936/1965
The issue with using the stomach is whether there is enough there to make breasts of “an appropriate size”, appropriate I assume to the particular patient. You don’t want to wake up after eleven hours of surgery and be disappointed, I suppose. Here, we see something of an inappropriate size.
4. Rineke Dijkstra, Julie, Den Haag, Netherlands, February 29 1994
The point of breasts, 1: for the baby.
4. Eric Gill, Ibi Dabo Tibi 1925
The point of breasts, 2: self-evident. (Plus, I have a soft spot for Eric Gill, only because a Walter Shewring – no relation – edited his letters.)
5. Eric Gill, Skaters 1926
The point of breasts, 3: admittedly less common, but nude ice skating.
6. David Bomberg, Lilian 1932
This is a portrait of Bomberg’s wife, Lilian. The Tate says, “Lilian remembered that she sat with a black satin dressing-gown around her shoulders and arms, because she was shy of posing completely nude.” I like this painting because it reminds me that there was a time when the world and his wife had not measured, poked, photographed and sketched my chest, when I did care who saw and who didn’t. I like her modesty and the way the artist keeps something back from the viewer. This is how it was and maybe how it will be again.
December 6, 2011 § 2 Comments
Last week, to celebrate World Aids Day, I went to a lecture given by Professor Mary Collins. Mary, aside from being my friend, is Professor of Immunology and Dean of Life Sciences at University College London and her lecture was titled, “From pathogen to ally: engineering viruses to treat disease.” I didn’t understand much of it, but here’s what I think Mary and her team are doing.
The HIV virus is very good at making its way through the body to attack the body’s immune system via its T-cells. What Mary is doing is turning this on its head, genetically engineer the HIV virus so that it can carry good stuff into cells where nasty stuff is happening. At the moment, the practical uses for this are limited, although a team in Paris have used a modified HIV virus to treat children with a disease called adrenoleukodystrophy, a severe hereditary condition in which the nerves gradually lose function leading to increased mental and physical disability – it’s the disease featured in the film Lorenzo’s Oil. What Mary and her colleagues hope to do in increase the uses of the HIV virus to improve vaccinations for a range of other diseases from Parkinson’s to influenza.
Now I may have got the science wrong (and you can read Mary in her own words here). This is difficult stuff for the lay person: the words are unfamiliar, the diagrams make only minimal sense and this is before we even contemplate what’s going on here. A virus that has killed 24 million people since 1981, that is still reducing life expectancy for people in countries like Botswana by at least 20 years, is being manipulated to offer other people will all kinds of horrible conditions the hope of a cure. How amazing is that?
At the same time, Siddhartha Mukherjee’s book, The Emperor of All Maladies, about the history of cancer, won the Guardian First Book Award. I can’t quite bring myself to read this at the moment, but it does sound good, covering everything from 19th century mastectomies, performed without anaesthetic or penicillin, to the development of chemotherapy from observations of the effects of mustard gas during World War I.
In an interview with the Guardian, Mr Mukherjee answers the question; can a positive attitude cure cancer?
“No, I think it’s not true. It’s not true. In a spiritual sense, a positive attitude may help you get through chemotherapy and surgery and radiation and what have you. But a positive mental attitude does not cure cancer – any more than a negative mental attitude causes cancer.”
I like this. I don’t believe that my life is dependent on whether I think good thoughts or not, which is just as well as my thoughts are not always very positive. It’s more comfortable if you can think positively but who can do that every day? I would much rather believe that my fate is in the hands of people like Mary, who work away, year after year, making progress, inch by inch.
Coincidently, on the way to Mary’s lecture, I was listening to a downloaded edition of In Our Time about Miracles. One of the contributors made the point that miracles may well just be phenomenon that we just don’t understand yet. His example: if you have no knowledge of optics, a rainbow would seem like a miracle.
Modern medicine is not a miracle – someone understands it, even if that someone isn’t really me. All I think is how grateful I am that people like Mary and her colleagues and students are wearing their white coats and doing things with test tubes and microscopes and making this stuff happen.