Monday, 8 November 2010

Living With It


The doctor said that if it comes back in a year they will be disappointed, if it comes back in two that won’t be so bad and they can treat it again. And then presumably again, and again. So, a remission of two years is good, not sure, her words are all muddled in my head, lost in a fug of dread.

She also said, “It is so early in your treatment, that we can’t tell.”

I’m at the early stage of it, the long haul, contortions which often prove so futile. I am not that scared of death. I can imagine lying in a hospice somewhere gently fading away, it’s the wretched journey you have to go on to reach that point which is so fearful and daunting.

To try and get on with a normal life again I arranged to meet a friend at the Royal Academy to see the Treasures of Budapest Exhibition. She is a “friend” of the RA and has a card for the Friends’ Room; I gave up my card sometimes ago as it seemed like an unnecessary luxury. Now seeing the queue for the restaurant and the impossibility of getting a seat in the café decided to join again, £85 just so that I can sit in the Friends’ Room without hassle or queuing. I don’t even like the Friends’ Room much, it is full of rich old ladies with short cropped hair and must be one of the most genteel spots in Europe. What the hell. What am I saving my money for?

The exhibition of the work once owned by the amazing Esterhazy family of Budapest is so extensive that I only get part of the way round, no where near the modern stuff, including the lesbians by Schiele, so craftily put on the poster.

It’s a wonderful collection but a lot of the work is about death and suffering. There are also some polychromatic wooden carvings of St Roch, showing his ulcerated leg, and St Sebastian wallowing in his arrow wounds. While the gallery attendant was looking away, I quickly touched the shiny wooden toe of both saints - invoking the ancient idea that touch can heal, magical thinking.

They are similar to the Spanish sculptures I saw right at the beginning of my ordeal. I can just about focus, but the doctor’s words keep reverberating in my mind. Realise that I am in a fix – it’s like a bad dream from which I just cannot wake and never will.

I asked her if any of her patients live to be old? She side-stepped me by saying that most are diagnosed when they are already old. I take that as a no, and the number five haunts me, as if I have been given a death sentence suspended for five years.

Being with my friend helps a lot, but no words can change anything and there is no escape.


Decide to buy a new car. Approaching garages and the strange creatures who work in them is as tormenting as anything depicted in those Mediaeval paintings, Hieronymus Bosch meets Arthur Daley, and that should take my mind off things.

Try out a Vauxhall and arrange to see a Ford, then decided to take the advice of the men in my local garage and go for a VW Fox. In times of stress, get a German engine.

Luckily for me, Adam, the salesman is Polish and quite civilised. It is actually quite pleasant being with him, he’s not some spiv from another planet who speaks an entirely different lingo. We go for a test drive. The clutch feels oddly high and stiff but I manage OK.

It makes me think of when my Dad used to get a new car, the excitement of joining him on the test drive, then the strange pride of the “running-in” notice he’d put in the back. In those days cars had an infancy and difficult adolescence before they somehow matured into smooth running purring beasts. He understood that process just as he understood how to deal with the senility of TV sets. We would shout out, “Dad, the telly’s gone wonky,” meaning that the line hold had gone again making the picture zig-zaggy, or people on screen looked attenuated or stumpy, as if they were in distorting mirrors. He would settle it with a simple bang of his fist on the top of the set.

Adam offers me a car warrenty of 36 months. I wonder which will run out first, me or the machine. What does he think, with me sitting there as bald as a coot? He gives no indication that he has noticed anything strange.

Signing papers I remember that I’ve also got a mortgage which has to be paid off in ten years. I might not even be here by then. It’s mind and spirit boggling.

I’ve got an endowment policy coming up in 2012 – what a magic sounding year; the Olympics, the Queen’s Jubilee, my endowment, and perhaps my death, or my mother’s.

6pm bonfire party at the vicarage in Ealing. Parking is restricted till 7.30pm By the time I find a parking space I have missed all the food and the fireworks. There are pans of greasy water containing no frankfurters and a slew of used plastic cutlery. People stand about in the dark as a small fire dies down inside a small brazier, eating rolls containing nothing except tomato sauce. Apparently there are vegetarian sausages in the kitchen, but no one wants them. Enjoy standing about in the wet holding a sparkler and chatting.

On the way home pay a call on my friend who looks after Maisie when I go away. There are a lot of guinea pigs on the carpet and they all stop whatever they were doing when they see me. They huddle together warily, except for one who stays in bed by herself watching me from a distance. Elaine has a new hamster. Another sign of modern times – it doesn’t look like a hamster to me. When I was a child hamsters were very small, square, pinkish colour and they were utterly boring. This is obviously a rat which has been crossed with a hamster or perhaps just lost its tail. It’s long and large, with a pointed nose and fine whiskers. He is also delightfully clever. He sorts everything she gives him into groups, putting all the things he doesn’t like into the area he uses for a loo. He keeps what he likes in his play area. Hamsters never used to put anything anywhere but in their pouches. They must be like A level students, increasing their intelligence exponentially every year defying all previously known laws of evolution.

In the evening when I get home and sit by myself my spirits sink and I think I might go mad. There is no one to help.

Saturday 6th Nov.

The shock of the doctors has passed a bit and I feel more confident. There is so much to do – I have to clear out a space under my stairs so that I can have the damp treated. There are boxes and paintings that have been in there since 1995. I am going to the church to volunteer to sell Christmas cards. American actress Elizabeth McGovern, currently starring in Downton Abbey on ITV turns up to open the new Christmas shop. She has tiny little eyes like currents and the skinniest legs I've ever seen. You don't get to see them on TV when she is dressed like an Edwardian.

The rest of the day is busy, I've got a painting to get on with, have to research my forthcoming trip to Venice, a friend is coming over in the afternoon and I am going to a film with other friends in the evening. Seeing people, being busy is the only way to feel that life is flowing normally again even though it isn’t.

In the church meet a young woman from Brazil whom I have seen there a few times before. We have a chat, she doesn’t speak much English but reveals that she thinks St Michael’s is a Roman Catholic Church. She obviously doesn’t notice that the Pope is never mentioned.

I tell her it’s protestant, Church of England but she looks blank. Realise I have no idea how to explain this to her. Someone from Wembley recently told me he has had the same experience with some Rumanian Catholics. There is a new kind of ecumenism, by mistake.

In Turnham Green tube hear two young Sikh boys chatting. One says to the other that it is very difficult to get by tube from Ealing to Hampstead. He says this is “social engineering,” and “by no means an accident.” I would like to talk to them about this, but they are going west while I am going east and as usual everyone is moving at a terrific rate.

Years ago I heard almost the same thing from the late, unlamented Bernie Grant. He said there was apartheid in England and if he set foot in the leafy streets of Hampstead he would be arrested. I never think about Hampstead as it is so far away, as remote from me as Inverness. Perhaps they have a police state up there and have influenced the BBC to keep quiet about it.

The young man’s words also indicated to me that he thinks Hampstead is wealthy and posh, and Ealing rough. That is another change. Only a few years ago Ealing was a very select place. A bourgeois suburb of expensive family houses. Now you can see the population is poorer, a lot of women are veiled, the shops are going down market with “pound-stretchers,” and charity shops arriving. The high street no longer looks elegant and expensive and seems to be joining up with Southall further down the track.

In London these changes can happen so quickly you don’t notice it until it’s become a new reality around you.


  1. Hi Jane
    I have been following your recent posts with interest, as I have been where you are now myself. What helped me navigate that awful time was creating a series of milestones for myself. Get to the 6 month mark without a relapse - after that you are still classed as 'platinum-sensitive', though the docs prefer you to get to the one year mark to qualify for that particular label - so that's the 2nd milestone: get to one year. Then get to 2 years (for statistical reasons this is significant - I won't say why unless you want me to). Then, and only then, did I let myself start to think about the 5 year mark.
    Hope this helps.

  2. That is exactly how I am thinking - just get to January then after that to the next scan.
    Have you got past the five year mark??

  3. They count the remission period from the first day of your last chemo cycle, by the way.

    I wasn't going to mention this unless you specifically asked, but I relapsed about a month ago - I got to nearly 4 years - and am now 2 cycles into another bout of chemo.
    As you will know, 4 years (almost) is considered to be a very good result in the world of ovarian cancer, and they have said they expect me to respond well again. So in terms of the 5 year mark, short of an unforeseen disaster, I not only expect to be alive at that point but also for many years beyond it. Previously, I always thought in terms of getting to 5 years without a relapse. Now, the goal posts have shifted and I am creating a whole new set of milestones for myself: (1) complete this course of chemo (2) get good scan & blood results (3) get to 6 months, etc, etc.

    It has been horrible but not as devastating as the initial diagnosis in my experience - I think because I always expected it to come back.

  4. I am so sorry to hear your news, but glad you got as far as you did, I hear that is very good news.
    The longer the remission the better the prognosis, and of course after a longish break you are more prepared to go through the treatment again.
    I hope I can get four years too!