Friday, 29 May 2009

Scanned from Bottom to Top

This week has been a whirlwind. On Wednesday I phoned Bupa to get authorisation codes for a battery of tests and procedures. Then I cancelled all my appointments for the rest of the week. Yesterday I had an MRI scan of my breasts. If you’ve never had an MRI it’s a bit like being in 2001 – a Space Odyssey. They slip your body into a claustrophobic white tube and then play all sorts of loud, discordant thrumming and whanging noises. It reminded me of a Laurie Anderson concert.

This morning I had a CT scan of my lungs. After that Nick and I went to meet Honoria, who is to be my breast care nurse at the Harley Street Clinic. She’s small and blonde and wears lashings of eye make-up. I could tell straight away that she’s quite wonderfully batty. We sat and chatted in a room that was full of boxes of underwear – mastectomy bras and the like. Nick’s eye fell upon a knitted silk camisole. “That’s nice darling,” he said, “you should get one of those.” “Those are for people having radiotherapy, “ said Honoria.

Next up was a radioactive injection in preparation for the big one - a bone scan this afternoon. The technician warned me about radioactive contamination. No kissing. No fraternising with small children. Wash your hands twice after peeing and don’t touch your clothes. And please use the special toilet reserved for radioactive people.

There’s quite a bit of hanging around, waiting for the injection to do its work before I have the bone scan. Eventually I feel the need to use the special toilet. I pee and then wash my hands twice. But then it occurs to me, what if some of the other radioactive inmates failed to wash their hands? How do I get out of here without touching the radioactive door handle?

The bone scan is quite a procedure. I have to lie perfectly still whilst a rather prehistoric looking giant box camera about a yard square photographs my body in sections. I guess they use huge pieces of film. Each exposure takes several minutes.

Now Nick and I are in Mr Hadjiminas’s consulting room. He looks at me, “Good news,” he says, there was no cancer on the CT scan of my lungs. Then, “Not such good news,” the MRI scan a showed second tumour in my left breast. “Oh” I say, “and what does that...” my voice trails away. “It means you’ll have a mastectomy,” says Mr Hadjiminas, helpfully. I gawp at him for a bit. I look at my fingernails and then sit on my hands. “But I don’t want a mastectomy,” I say. “It’s for the best,” replies Mr Hadjiminas, and he’s off: “We save the nipple and the skin. And we can do reconstruction at the same time.” Mr Hadjiminas warms to his subject, “and it means you won’t need to have radiotherapy. If there’s no breast, there’s no possibility of the cancer recurring.” I realise that I’m out of my depth. What I really want to do is stick my fingers in my ears and sing “la-la-la”. I don’t know what I’m talking about but something almost subconscious prompts me further. “Is there any alternative?” I ask. I sound desperate.

Mr Hadjiminas looks thoughtful. “Well yes, there is,” he says. “We can do a quadrantectomy.” “And what is that?” I ask. “Well, we take away about a quarter of your breast and the sentinel lymph node, then we have to look at all that in the lab. If we’ve got all the cancer out and the margins are clear then we can do reconstruction surgery three days later. We use a muscle that we take from your back. If we find anything in the sentinel lymph node then we remove all the other lymph nodes from under your arm at the same time." Suddenly, Mr Hadjiminas is just as fired up about this procedure. “And does that mean I will still have feeling in my breast?” I ask. “Yes it does,” he replies. “And will it look alright?” Mr Hadjiminas reaches for his photo album. It is full of pictures of women’s breasts.

He opens it to a spread that obviously displays some of his best work. Before showing me the photo on the right hand page he judiciously covers the left hand page with a piece of paper. I guess it’s the 'before' photo. In any case, whatever lies beneath that piece of paper cannot possibly be as horrifying as what I'm imagining. The right hand page shows a photograph of a woman's torso. She has the most beautiful pair of breasts. "Those are fantastic tits," blurts Nick. “Not as fantastic as mine,” I say, a touch frostily. “Oh, I don’t know...” “Anyway,” I say, slapping the desk decisively, “that’s what I’m having.” Then I suddenly feel that maybe I’m being too forceful. I don’t know what is the best treatment for me. Mr Hadjiminas does this every day. He’s trained for decades. How can I tell him what to do? “I mean, is it ok to do that?” I ask, sounding a bit sheepish. “I wouldn’t even offer it to you if it wasn’t ok,” replies Mr Hadjiminas, “but if the margins are not clear then we will have to do a mastectomy anyway. That’s the risk.” “It’s a risk I’m prepared to take” I reply.

We all look at one another. That, it seems, is a done deal. Honoria puts her coat on. Mr Hadjiminas looks at his watch. It’s after six and it’s Friday. “What about the bone scan?” I ask. “Oh it’s not ready. Probably fine. The full report hasn’t come through. We’ll let you know on Monday.” I look at them both. I cannot possibly endure the anxiety of waiting two days for to find out if there is cancer in my bones. I must insist. I tell them the story of Gaby.

Honoria takes her coat off. Mr Hadjiminas sits down and picks up the phone. “Please bring Miss Lily’s scans and report across as soon as they are ready.” We all settle down to wait.

After about twenty minutes a porter appears with an A4 envelope. If the giant camera was anything to go by I was expecting an envelope the size of the table. Mr Hadjiminas pulls out a piece of film. On it are a series of images of a teeny-tiny skeleton, about two inches long. “These are all clear” he says.

Wednesday, 27 May 2009

Day Two

Nick has offered to stay on for another two weeks. He has already been in London, so far away from home, for three months. He has extended his stay twice. There is considerable pressure on him to go home. Obviously, he hasn’t worked in three months. Added to that, his twenty-one year old son has been running off the rails and getting into trouble. Nick is terribly worried about him. Nick’s ex-wife says that he should be there to support his son.

In principle I agree with her. I cast my mind back over my previous boyfriends: Ray, the junkie; Brendan, the self-obsessed photographer; Trevor, the sociopath criminal. Would any of them have stuck by me when faced with illness and fear? I already know the answer to that. Just this once I’m going to be selfish. I bite my tongue and accept Nick’s offer to stay with me. It seems that I’ve found a good man at last.

From: Lily

Subject: Nick’s farewell dinner - AGAIN!

To: Sheldon, Flossie, Seraphina, Ben, Antony, Doug, Jimmy, Jamie, Ted

Owing to unforeseen circumstances, Nick’s farewell dinner is once again being postponed for a couple of weeks.

Will advise new date shortly.



From: Antony

Subject: Re: Nick’s farewell dinner - AGAIN!

To: Lily, Sheldon, Flossie, Seraphina, Ben, Doug, Jimmy, Jamie, Ted

oh ..........????


From: Flossie

Subject: Re: Nick’s farewell dinner - AGAIN!

To: Lily, Sheldon, Seraphina, Ben, Antony, Doug, Jimmy, Jamie, Ted



From: Sheldon

Subject: Re: Nick’s farewell dinner - AGAIN!

To: Lily, Flossie, Seraphina, Ben, Antony, Doug, Jimmy, Jamie, Ted

I am retrieving my wedding suit from the pawn shop...

I don’t know how to tell people what’s going on. Do I pick up the phone and say “Hey, guess what...?” Do I send a round-robin email?

I don’t want this cancer to be a big secret, neither do I want it to start defining who I am.

Of course I should tell my mum before the word gets out on the grapevine. But I can’t bear to make that call. The thought of it brings me to tears.

Mum moved to Tasmania twenty-one years ago. I don’t know how she will cope with the news, being so far away and helpless in the situation.

So I suppose whenever friends ask: “how are you?” I will just have to tell them the truth.

Tuesday, 26 May 2009

Free Leaflets

This morning my life changed completely and forever.

5.30 p.m. I’m back at St Mary’s in the waiting room. It’s quite empty now. Nick is with me. We don’t have to wait long. This time my name is called by a nurse who turns out to be lovely and named Vicky. She is the breast care nurse.

Mr Hadjiminas doesn’t waste my time. He confirms the worst straight away. I have a malignant tumour. It is 31mm. “Quite small” says Mr Hadjiminas. I hold up my fingers in an approximation of the size. It seems quite huge to me. “We can get you in for surgery in three weeks” says Mr Hadjiminas. I was seriously ill in my twenties and I am self-employed. Those two factors conspired to get me to do the one and only sensible thing I have done in my life, that is to get health insurance. I don’t know how but I managed to pay that subscription even when I was out of work and on the dole. I’ve paid it for twenty years. It’s the power of fear, I guess. “I have Bupa” I hear a small voice say. “In that case I can do you next Wednesday at Harley Street” says Mr Hadjiminas.

Now he has to do a punch biopsy. Surprise is the tactic here. I probably shouldn’t tell you how painful that procedure is in case you ever have to have one yourself. If I had known in advance I would have fled the scene and taken my tumour with me.

Then we all crowd around on the chairs in the little consulting room and Mr Hadjiminas asks me if I have any questions. I can’t think of a single one. Nurse Vicky hands me a bunch of leaflets. I feel sympathy for the medical professionals. Although they must break the bad news to patients on a regular basis, somehow I doubt that it ever gets any easier. Not if they are human, which these two definitely appear to be. In my experience, when people give one leaflets it’s because they too are at a loss for words.

Fortunately, Nick knows no such reticence. He has gone into a sort of verbal panic, firing off questions in a scattergun kind of a way. “Will she have to have a mastectomy?” No, it will be a lumpectomy. “Will she have to have radiotherapy” Yes. “What about chemotherapy” No, they didn’t find cancer in the lymph node. “What about diet?”...

I hope that Nick will be able to cope with the reality of what is ahead. Although I’m grateful to Nick for doing all the talking, I put my hand on his knee to quiet him. We all look at one other in silence. Then Nick pipes up with a final question. “She will be ok won’t she?” “Oh yes, she’ll be ok” replies Mr Hadjiminas, as if he’d only just thought of it.

Who On Earth is She Talking To?

I had an appointment at St Mary’s hospital this morning for an ultrasound scan. Nothing unusual about that. I’m always popping into St Mary’s or Charing Cross or Hammersmith hospital or the Cromwell for a scan or x-ray or something. Broken fingernail? Quick! MRI needed!

I recently went to see West London’s loveliest GP, Dr Camilla Ducker. I’d been feeling a bit tired and, where most people would probably have a little lie-down, I opted for the full blood count. Whilst I was there I mentioned that my left breast has been feeling a bit hard and quite tender lately. “Well you’d better get it checked out”, she said. That was two weeks ago. In the interim Nick and I have been travelling in Tuscany.

Early summer is the most glorious time of the year to be immersed in the most fairytale countryside on planet earth. Hillsides of bright red poppies waver up toward ridges lined with dark silhouettes of flame-shaped cypresses interspersed with the delightfully rounded outlines of umbrella pines. The yellow stone of a mediaeval hilltop town catches the sunlight, glowing against a deep azure lake of sky. For the last twenty years this is where I’ve come to visit my cousin Gaby. With every curve in the sweeping road I think of her, throwing back her blonde head in unsuppressed laughter. Beside each lavender bush I see her angelic face, bent close, intently examining every leaf and bud. Amongst the boxes of vegetables at the greengrocer’s I hear Gab’s throaty voice lovingly praising a tomato or a cabbage. But I won’t see Gaby on this trip. She died seven months ago, of cancer. I’ve come now to mourn and remember her.

Nick didn’t know Gaby. He and I met on the second of January, In Sydney. It’s been a fabulous whirlwind romance. He followed me back to London and we’ve slipped into a lovely, easy togetherness. I’ve introduced him to all my favourite bits of London. We’ve travelled to Istanbul and Cardiff (don’t ask). At first I hesitated to take him to Tuscany. Would it be appropriate to bring my new boyfriend to such an intimate and sad family event? Now I’m glad that I did. I would dearly love for Gaby to know Nick. I would want her to laugh at his capers, to flirt with him as she flirts with all the world. I’d love her to love him, as I do. Knowing Gaby’s world: her family; her husband; her village and her garden is as close as Nick will ever get to knowing her.

When we got back there was a letter on the mat inviting me to attend the breast care clinic at St Mary’s.

I’m not normally one to miss out on the chance of a morning hanging around in a waiting room reading half a copy of Hello from September 2007 and stickybeaking at all the other patients, trying to figure out what their particular ghastly disease or disability might be. This morning, however, cuddles with Nick held me to the bed like magnetic honey. Finally guilt and a sense of civic duty prised me from our nest. All those posters admonishing the general public about the cost to the taxpayer (me!) of missed appointments have done their job with me. With many sighs and lingering backward glances I left Nick propped on the pillows reading the International Herald Tribune online and drinking a nice cup of tea. “Seeya” he said, lovingly.

A nice looking Registrar sought me out in the waiting room. “Miss Lily” he asked, “would you be willing to take part in the trial of a new diagnostic machine?” He described a device that claims to detect tumours by infra red or sonar or some such method. How could I refuse? I’d get to have a scan and advance the cause of medical science at the same time. I signed some papers and he ushered me into the presence of a white-coated consultant, Mr Hadjiminas. Over the years I have learned that it is proper to call doctors ‘doctor’ but surgeons are called ‘Mister’, don'tyaknow. After a brief chit-chat I half-undressed behind the screen. Mr Hadjiminas applied the device. It made some thrumming sounds. Then he examined my breasts by hand. He filled out some forms. “Ok, we’ll just send you up for a Mammogram and an ultrasound.” “But I haven’t come here for a Mammogram” I protested. “Oh it’s routine, everybody has one”. That statement felt unconvincing.

I have always heard that Mammograms are very painful, especially for those with small-but-perfectly-formed breasts. Well in my experience, it’s not true. There’s a certain amount of awkwardness involved in angling one’s torso so that one’s tit may be sandwiched flat between two sheets of clear plastic whilst one’s jaw and cheekbone are crushed up against the back-plate of the machine and one’s shoulder blade is wrenched backward to facilitate one’s arm being twisted around behind one’s waist. But that’s all fairly routine stuff for a yoga bunny like me. And of course there is the sartorial pain of having to wander the public corridors robed in a hideously patterned hospital gown with half the tapes missing.

Next stop was the ultrasound. I lay still whilst some chilly goo was applied and then looked at the pulsating swirl on the screen wondering, as I often do, how anyone can make head or tail of it. The doctor doing the scan was French. And a woman. That’s all I can tell you. She looked at me and said “There is a tumour here and in my opinion it could be malignant. I’m sorry but I have to tell you this now because I need to do a biopsy of your lymph node right away.” Somewhere, far away, a mind that was not my own thought the following thought: “Who on earth is she talking to?” The next thing I knew she inserted a long needle into my armpit. I don’t think it hurt particularly but I started to cry.

I dressed and returned to the breast clinic to wait whilst they emailed the findings to Mr Hadjiminas. The waiting room was now full. I looked around for a chair but somehow I couldn’t really comprehend the information. My eyes relayed pictures of vacant seats to my brain but it couldn’t figure out what to do with them. I stood in the middle of the room staring helplessly this way and that. Finally I plumped down next to a striking black lady with an elaborate hairdo. I guess the autopilot said: “sit next to the most stylish looking person in the room.”

It seemed that half the waiting room was for people having blood tests whilst the other half was for the breast clinic. Suddenly I felt too exposed. I wished all the blood test people would go away and leave us breast clinic people to ourselves. We have serious things to worry about like possible malignant tumours. Who cares if they’re feeling a bit tired? Why don’t they just go for a little lie-down?

The elaborate hairdo lady put her hand on my arm. “There’s nothing that Jesus can’t heal,” she said, “it is God’s will that you are to be well, healthy and whole”. I gaped at her like a malignant carp. She handed me a Xeroxed sheet titled with the words Healing and Jesus Loves You. She reached into her capacious handbag and pulled out a full-sized hardback bible. She opened it at one of the many pages marked with post-it notes. She began to read: “He Shall Call Upon Me, and I Will Answer Thee, I Will be with Thee In Trouble, I Will Deliver Thee, and Honour Thee...” I wanted to throw myself into her arms and weep. Of all the people in the waiting room, I had had the good fortune to sit next to someone who wasn’t embarrassed to extend a hand of kindness, someone who had the courage to show empathy. Maybe it wasn’t her hairstyle that my autopilot was attracted to after all.
“Miss Lily” called a voice.

Back in the consulting room quite a crowd had gathered. Suddenly they were all being very nice to me. I took that as a bad sign. Mr Hadjiminas did another needle biopsy, this time from my breast. “We’d like you to come back this afternoon for your biopsy results.” “Surely you mean ‘come back in three weeks and hang around for two hours and then we might see you’?” I thought to myself. “What time?” I said. “Oh, whenever is convenient for you.” I took that as a very bad sign.

I don’t remember driving home. I don’t remember parking the car. I do remember walking in the door and seeing Nick, still propped up in bed with the laptop and another nice cup of tea. “Hey darling, how’d it go?” he asked, brightly.