General status update
Hair: Newly washed and very shiny; shedding very slowly, and still mostly there.
Nausea demon: getting excited about FEC 4 on Wednesday; he’s ready to roll.
Chemo Muse: getting excited about the big dose of steroids which will accompany FEC 4 on Wednesday.
Chemo Brian: regained the sofa while the Coughing Demon was in the bathroom, and is now defending his position with adroit use of his knitting needles.
Coughing Demon: he’s been unable to bring about the hoped-for progression to pneumonia, so I’m hoping he will start to lose interest very soon, especially as I don’t want him to frighten the oncologist into delaying FEC 4.
Fatigue/weakness: If I’m not strong enough to totter down the Fulham Palace road to see the oncologist for the pre-chemo meeting tomorrow, then I’ll get a taxi. Sorted.
Sleep, lack of: Now woken up in the early morning by coughing rather than nausea, but that will all change on Wednesday after FEC 4. Or maybe it’ll be coughing AND nausea. Now there’s a thought.
Anxiety level (1-10): We’re on the fourth floor, so urban foxes aren’t going to get in here unless they find a Very Big Ladder Indeed.
State of mind: coughing makes your brain hurt, if you do it long enough and hard enough. I could say my mind aches, but that would be to ignore the whole problem of the mind-brain identity question.
Visiting the Haven is like being enfolded in a warm embrace: when I walk through their doors in early September 2012, 5 days after being diagnosed with breast cancer, I am still in a state of shock and extreme mental agitation, but even before I speak to anyone there, the building itself begins to have an immediate calming effect on my troubled mind.
The London Haven is located in Effie Road, just behind Fulham Broadway, in an old Welsh Presbyterian church converted by a designer of genius into a sanctuary which combines light and space, texture and colour, in such a way as to create an environment which is aesthetically pleasing, soothing, and spiritually uplifting. The heavy wooden entrance doors are carved into an ornate Tree of Life design and inside, the whole ground floor is a light-filled open space with curved walls, soaring ceilings and wooden floors covered in jewel-coloured kilims; at the front is the reception area, at the back is a grouping of large, comfortable sofas, an extensive library on everything to do with breast cancer, with computers for further research, and a kitchen area where visitors can make themselves tea or coffee. There is also, at the far end, a wall fountain over a mosaic-tiled pool, where you can sit and trail your fingers in the cool water as you listen to its soothing sounds.
The other floors contain many rooms for treatments and counselling and meetings, but this welcoming public space on the ground floor is the heart of the Haven: it calms your nerves, draws you in, and makes you feel instantly at home, as does the knowledge that everyone in this building either has breast cancer, like you, or is someone who is trained to help you deal with it. You no longer feel like a freak, a diseased outcast; you are somewhere where you belong. You may have been forced to join the exclusive club of which no one wants to become a member but oh my, does it have fabulous premises!
On my first visit, rather early for my 10 o’clock appointment, I make a mug of coffee, sink into the squashy embrace of a sage green sofa, and look nervously at the other women already sitting round the table who, it occurs to me, are my new peer group: we all have breast cancer. I fall into conversation with two women in their early thirties who are already veterans of the disease; they have endured surgery and courses of chemotherapy, recently completed. They seem to shudder visibly as they talk about the chemotherapy, and I think, poor things, thank God I’m not going to have go through all that, I just couldn’t bear it.
I tell them, my voice wobbling, that I have just been diagnosed, and they are kind to me. I tell them I will be having a lumpectomy, and then radiotherapy, but no chemo, and they nod, and smile at me with sad smiles. It is only much later that I realise their main kindness is in not pointing out that my confidence about ‘no chemo’ is entirely misplaced – until the surgeon has cut you open and removed the tumour from your breast, and a lymph node from under your arm, and until the path lab has then decoded the encrypted histological narrative of your cancer, the doctors are only guessing.
Where breast cancer is concerned, the bad news often comes slowly; I know now how unwise it is to suppose that the best case scenario presented immediately after your diagnosis will necessarily prevail.
Our talk turns to diagnoses, and I learn that not all are as straight-forward as mine. One of the women, S, was pregnant when she found the lump in her breast; her concerns were dismissed by her GP, who told her that breast lumps were common in pregnancy. Later, after the baby was born, S was again told not to worry, as breast lumps were common in breast-feeding mothers. Her voice tight with anger, S tells me that by the time the GP finally agreed to send her for a biopsy, her diagnosis had been delayed for 8 months, and the cancer had spread to her lymph nodes.
The other woman, G, is a banker, a City high-flyer. She tells a story of how, fearing for her job in the current financial downturn, she agreed with her employers to delay her mastectomy operation for a month, because the timing was inconvenient for them; I am so astonished by this story I ask her to repeat it, because the callousness seems beyond belief. The question which echoes insistently through my head - why didn’t you tell them where they could stick their f***ing job? – remains unasked, as it would be unhelpful. G is young, single, probably has a huge mortgage, and her identity is, or was, bound up with her job – from the distant look in her eyes, though, it seems she has now realised it is not her job that is the life or death matter.
My introductory appointment is with N, a warm and welcoming woman who specialises in nutrition. She hears the story of my diagnosis, asks me some questions about my personal history, and listens to me with infinite patience and kindness as I ricochet wildly between gabbling furiously, making jokes, and bursting into tears.
Eventually, with our time running out, N guides me gently towards choosing some of the various services that the Haven can offer. Each visitor to the Haven is allowed ten free hours of complementary therapies, from a very comprehensive list including counselling, nutritional advice, herbal medicine, creative visualisation, acupuncture, aromatherapy, relaxation, Tai Chi, yoga…and many more.
I know what I need the most, and it is something that I have never once previously considered – counselling. My image of therapy has been formed primarily through Woody Allen films of rich, neurotic New Yorkers paying ridiculous amounts of money to someone to listen to their First World problems, and endless yammering about Me Me Me; my own approach to good psychiatric health, in contrast, is to stop blaming your parents and keep your Inner Child firmly locked up in a cupboard. In fact, given that my family originated in North Yorkshire, my Inner Child should be profoundly grateful that she isn’t confined to the coal cellar.
In my current circumstances, though, all bets are off. It is crystal clear to me that I desperately need someone to talk to, someone who is not emotionally invested in me. One of the first things you realise after being diagnosed with cancer is that you have to deal not only with your own emotional distress, but also the emotions of your family and friends, which are sometimes not particularly helpful.
In the worst case – and every cancer patient seems to come across such a person at least once – you end up having to comfort someone because they feel your news is just too distressing for them to deal with. In my own example of this, documented elsewhere in this blog, a very close friend wrote to me to say that she couldn’t be around me while I had cancer, as she had a phobia about illness, but would be happy to pick up our friendship again later on, once I was cancer-free. I was so appalled that I never replied, but what I wanted to ask her was: ‘So, with your phobia about illness, what will you do when cancer comes for you?’
More generally, the problem is that you can’t be completely honest about your feelings because your emotions are so raw, your pain and fear and anger so powerful, that inflicting them on those who love you the most will leave them profoundly distressed by their inability to help you, to make it better for you. I hate the word ‘journey’ in relation to cancer, but in this context it is very apposite: the hugely painful transition through shock, denial, and anger to acceptance of your new reality is a journey that you essentially have to make alone, however much you are loved and supported.
One of the very few moments of insight I have in those first few demented weeks after diagnosis is this recognition of an urgent need to talk to someone disinterested, a professional someone who will be emotionally unmoved by my distress, who can help me to unravel the Gordian knot of fear, panic, anger and anxiety that is pulsating inside my head.
I ask for three counselling sessions (it is later extended to more), and this is the single best decision I make after my diagnosis; the counselling sessions will become a life-line, helping to preserve my sanity in the difficult weeks and months that lie ahead.
I will come back to how the counselling works in another post, but will finish this one by describing something that happened on one of my many subsequent visits to the Haven, and which sums up the ethos of the place perfectly: one day, signing the visitors’ book, I said to the receptionist ‘You know, it’s so welcoming and comfortable here that I always just want to curl up on one of those lovely big sofas and go to sleep.’
‘That’s what they’re there for’ she replied. ‘So you can come in here whenever you like, and just put it all aside for a while – would you like a blanket?’