Take a look at me now...

Day 120

General status update

FEC cycle 6, day 5

Anxiety level/insane euphoria (+/- 1-10,000): we haven’t hit insane euphoria again, which is very sad, because I LOVED being manic, but the mental energy from the Dexys has at least kicked in and made itself useful.

Fatigue/weakness: physically, still immeasurable; mentally, not so much now.

Pain in left arm: considerable – a nasty little souvenir from those last 3 doses of FEC which went straight into the vein, and not the PICC line. It’s also painful to extend my arm out straight. Deeply hoping all this is going to go away before I start swimming again in 2 weeks’ time.

Nausea demon: he woke me up at 6am this morning, and is fighting on to the bitter end, but soon he will be gone gone GONE.

Chemo Muse: she’s had me had at it today, despite the fatigue – there’s quite a lot of stuff she still wants to say before it’s time for her to depart.

Despair Demon: brooding in the airing cupboard again. I wish he wouldn’t keep messing up all the clean towels.

Chemo Brian: he’s been trying to persuade me to go and see Yoko Ono and the Plastic Ono Band at the Royal Festival Hall in June, having fond memories of her and John in their ineffably inane naked protest days. NO, a thousand times NO! I’m sorry, Brian, but there are some things life is definitely too short for, and Yoko Ono is one of them.

State of mind: this is the LAST TIME, this is the LAST TIME, this is the last TIME.

Hair: I look like a shaggy dog now, I really do. BUT I HAVE HAIR.

I haven’t been talking much about my breast, which is odd, really, given that this whole saga started the day I discovered it was trying to kill me.

No, that’s unfair.

It wasn’t my breast that that trying to kill me, it was the unwelcome invader that had taken up residence in my breast, my tumour, Mr Collins; the greedy empire-builder who had crept in unnoticed, set up base camp in my ductal tissue and was now looking to colonise my bones, my brain and my liver, given half a chance.

But my right breast is where Mr Collins chose to establish himself, and from the day I was diagnosed with cancer until after the operation to remove the tumour, it felt as if I was walking round with an unexploded bomb strapped to my chest.

We were not on good terms.

After the operation, the alienation from my breast continues in quite a different way; it becomes a source of both public and private humiliation. One of the things you have to get used to very quickly as a breast cancer patient is having to take your top off so that strange men (not always men, but in my case it usually is) can examine, manipulate and perform procedures on your breast.

I’ve just counted up the list of people who have spent time with my breast over the last seven months: the locum at my GP, the 2 consultant breast surgeons, Mr G and Mr H,  Mr H’s 3 acolytes (all male); and the mammographer and ultrasound doctor (female). All of these people treat me and my breast with decency and respect, and I have absolutely no complaints about their behaviour; the difficulty is more of a psychological one, arising during the regular check-ups I am given during the weeks following my lumpectomy operation.

At the Breast Care Clinic at Charing Cross Hospital, the consulting room used by Mr H is very small; there’s barely room for a desk, a few chairs, and the bed behind a curtain where you disrobe for examination. When I am there with Mr H and R, that’s as many people as the room can comfortably take. If you add in Mr H’s registrar, a junior doctor, and a medical student, then the room starts to feel very crowded indeed: me and five men, in front of whom I have to display my breasts, one naked and normal, the other recently mutilated.

I don’t like it at all.

In the weeks after the operation, my breast heals well; the spectacular black and blue colouring (black from bruising, blue from the dye) is an irrelevance and the only problems are in the first week, a slight build-up of fluid (seroma) in the place where the tumour was, which is painlessly aspirated with a needle by the junior doctor, and by the second week a hardness, an unyielding quality to the flesh in the same place, which Mr H assures me is perfectly normal, and will disappear in time (it did). The stitches, which are all around my nipple, are made with self-dissolving sutures, and so do not have to be removed; they gradually begin to remove themselves.

All is well, all is going according to plan.

By the time it comes to the third check-up, though, I am also having to deal with the high likelihood that I am going to have to undergo chemotherapy, and am both distressed and emotional, and it all just becomes too much. At this appointment I am accompanied by my sister, but she is away fetching coffee when I am called into the consulting room, where I sit down with Mr H and, as the registrar, the junior doctor and the medical student also crowd themselves into the room, I think ‘No – I really cannot STAND this’.

So I just say, quietly, ‘I’m sorry, but there are too many people in this room’ and immediately and without question the registrar removes himself, the junior doctor and the medical student, which is not good for medical education, but saves me from breaking down in public.

I should add that my permission was asked at the outset for other doctors to be present at consultations, and I agreed; Charing Cross is a teaching hospital, and doctors need to be taught. I just had no way of knowing in advance how difficult I would find it to be half-naked, and examined by several male doctors in such a very small space. Maybe if one of the doctors had been female, or we’d been in a larger room, it wouldn’t have made me quite so distressed and uncomfortable.

At home I just try to ignore my breast altogether, keep it covered with soft camisole tops and tell myself that I am leaving it alone to heal, but that’s not really it: I don’t want to look at it, and I certainly don’t want R to look at it. I can’t bear this new bit of reality just yet.

It’s tricky, though, in the bathroom each morning when I take my shower, but with looking away when I’m applying soap, and big enough towels, and assiduous not looking in the mirror, I can contrive to get through my ablutions without really looking at my breast.

Until the day I when I do.

Towards the end of October, nearly a month after Mr H removed the tumour, the bruising has almost gone, and I get out of the shower, dry myself off, wrap the bath towel around my waist and stand in front of the mirror, looking at my breasts, full-on, naked. This is the first time I have done this since the operation.

The breast is still the same size and shape as it was before but the operation has had the promised effect of lifting it, so that the nipple is a little higher up, although the difference is not enormous.

What is different is the livid line of stitching that outlines the areola of the nipple, making it look much larger than before, and quite different from the other breast. My breast looks as if it has been sewn together from two different parts. It reminds me of….

Last autumn in London there were newspaper adverts and bus stop posters everywhere for a film by Tim Burton called Frankenweenie, about a boy who conducts a science experiment to bring his beloved dog Sparky back to life, with monstrous consequences, a la Frankenstein; the adverts and posters all featured a striking image of the poor dog, very clumsily stitched back together, and this is the first thing that comes into my mind as I stand there in the bathroom and look at my cut-open and stitched-back together breast.

Something breaks inside me at this moment of looking properly at my breast for the first time, and I stand there with tears pouring down my face, sobbing uncontrollably. I must be making a lot of noise because R immediately calls through the bathroom door ‘Caroline! What it is, what’s the matter?’ I open the door without covering myself up and he, too, sees my breast for the first time as I point to it and howl 

‘Look what they’ve done to me, it’s horrible, it’s a FRANKENBREAST’.

I am completely beside myself, and R puts his arms round me, holds me close, strokes my hair and calms me down.

‘It isn’t going to stay like that,’ he says ‘it ISN’T GOING TO STAY LIKE THAT. Remember what Mr H said – the scarring will gradually fade, and by a year after the operation, you will barely be able to see anything at all. Your breast will look pretty much like it did before.’

Rationally, I know this, that it will get better, but all I can see now, as I look at it properly for the first time, is the mutilation of my once beautiful breast, one of the things about me that R particularly appreciated.

And this is a special part of the horror that awaits women who get breast cancer: not only the threat of death, which is bad enough, but the fear that the treatment will mutilate you so badly that no one will ever look at you with desire again, if you’re single, or the fear that your partner, if you have one, will turn his eyes away from you, unable to hide his repulsion, that he will never want to touch you again. If you can’t even bear to look at yourself, what kind of reaction can you expect from anyone else?

‘You’re still you’ says R ‘and your breast will be fine, it’s just being mended. The operation has saved your life, and your breast will get better again. And this means you will stay alive, and we will grow old together, as planned.’

Then he kisses it, and me, better.

R is really, really good at that.

*     *     *

 Postscript: that day was nearly six months ago now and, as Mr H has promised, the scars have faded a great deal, and the ‘stitching’ effect has gone. Mr H is an excellent surgeon, and my breast is looking relatively normal again. I no longer become distressed when I look at it in the mirror.

In a way, I feel guilty for even writing about this, because I know that I am very lucky to have kept my breast: so many women lose their breast, or both breasts, entirely, and have to suffer far worse things than I have had to.

 But I can only tell my own story, truthfully, and this is how it was.