I haven’t written for so long, this blog feels like a stranger, albeit a friendly one. Today I just want to post a link and give a little background to it.
For a long time now I have been thinking about the meaning of friendship. It’s something that we rather take for granted. We assume. My thoughts are not fully processed yet, but I was planning a piece called ‘The Elephant in the Room’. The title was meant to refer to the presence of cancer in my life. How it intrudes and invades and changes relationships. How its very name strikes the loquacious dumb and makes strangers out of friends (and, indeed, friends out of strangers). But I’m not writing about that today. I digress. Today I’m merely mentioning the title.
A few weeks ago I was asked by Breast Cancer Care if I would be willing to be interviewed on Woman’s Hour, on Radio 4. The premise was to discuss how to give a patient bad news. I happily agreed to participate as opportunities for ‘civilians’ to discuss cancer come few and far between. I took this opportunity seriously because it was a chance to speak about the unspeakable on behalf of those of us who rarely get given a chance to voice our opinions. We are patients and we should be heard.
Anyway, joining me was a Professor – jauntily clad in a Burberry mac – who had just published a book called….wait for it….’The Elephant in the Room’. Hmmmmph. And “hey, that’s MY title!” His elephant is different from mine however. His elephant is neatly bound and printed, his elephant is in the Amazon. My elephant is more unruly. It hangs around and interrupts. It is invisible.
Here’s the link, it’s the first item: http://www.bbc.co.uk/programmes/b016x22t
I don’t have much time today, but it would be remiss of me not to acknowledge Secondary Breast Cancer Awareness Day, as organised by Breast Cancer Care. I spent an interesting couple of hours at Westminster today to strengthen the campaign to provide specialist nurses for those of us with secondaries.
I found the fact that there are only 20 specialist Breast Cancer Nurses, in the UK, frankly shocking. I can’t help feeling that we are neglected or forgotten and I am so grateful that Breast Cancer Care continues to fight on our behalf.
I always enjoy listening to the opinions of women who come from near and far to have their voices heard. We are a diverse group but united by our passion for living and for paving the way for secondary patients in the future.
Some of my friends were missing this year, but certainly not forgotten. And, as usual, I remain impressed by the range of women that I meet who are dealing with difficult situations with dignity and humour. So, I would like to raise an imaginary glass to all the women I have met – friends and friendly strangers – and to those who campaign on our behalf.
Thank you for caring enough to make a difference.
Yesterday I listened to a song that was a massive hit in Italy while I was having my chemotherapy (Sei nell’anima, by Giana Nannini). The last lines of the song are, “drop by drop, side by side”, and A used to say those words to me when I was feeling down and it always lifted my spirits. I had just started my chemotherapy and we went to a wedding and they played this song and I thought, “oh my god, I can’t do this.” I had a ‘moment’. A moment where I felt totally alienated from everyone around me. Yesterday I listened to this song and I felt the most profound sadness. Loss. I was blindsided. These are the wobbly moments that try to knock me off an already tilted axis. I remind myself to breathe. I remind myself that I couldn’t be the same after everything that has happened. I remind myself that I am doing the best that I can. And that no one can ask more of me than that. But I wish I could remember how I felt before. I really wish that.
If I asked why
Did this happen
There would be no answer.
This is the thing
That makes me catch my breath
The thought that this
Has no solution.
And all the hope
That I stored up
Tightly in my chest
And perhaps the thing
That makes me saddest of all
Is that I am forgetting who I was
Before this happened.
So, one operation over. And it’s cancer. So, okay and hmmm and what’s next? Another operation looms. They need to see if it’s spread. So I go and have my body injected with a radioactive dye and I sit in the car park in A’s car, massaging my left breast because you have to make sure that the dye reaches the tumour site. We laugh a lot because I look demented. Then I go back in and they scan my body to find the nearest lymph node. Dr M pops in, all jolly, and he looks at the scan and it’s all set. Operation tomorrow – one night in hospital. This is called – science, folks! – a sentinel node biopsy. They will remove the node nearest to the tumour and test it to see if the cancer has spread.
And back to the hospital again. I’m in a women-only ward. A has to leave at 8 o’clock and for the first time in my life I feel alone. ALONE. I’m thinking about my sister who is coming to see me the next day. I’m also thinking that she is about to tell my parents – who at this stage are oblivious – that I have breast cancer. CANCER! I’m thinking about how they might feel. I’m feeling guilty. I start to cry. Very quietly at first. Then a bit more. The room is full of very sick women. It’s very noisy. There are also the relatives who are fussing around and watching television. I have no one. Where’s my fuss? A lady sees me crying and comes over and gives me a hug. She asks me what I have. I tell her. She says, don’t worry, my sister had that and she’s fine. She offers me some food. Everyone looks at me. Everything about me is different and I am ALONE! But the kindness of strangers is strangely comforting.
In the morning, the doctors come to visit. Ah! Here is our English patient! They make me smile. Sometimes being different is good. And then it’s all over. A takes me home. Tomorrow I’m going to see my sister. I am shaking. She is part of me. I have never needed her so much. My sister.
Now I’m opening that box and it makes me so sad. Nagging backache. Must be the weather (humid), my posture (terrible). Feeling a bit sick. Silently screaming when people hugged me. Visits to the doctor, a chiropractor, check-ups in Italy and England. Must be nothing. Thought they could see something on my liver. Scared. More tests. Nothing there. Relief. Burst into tears on holiday with my family because my legs felt funny. Heaved two 20 kilo cases home from Italy. Hips on fire. Unable to get up off the bed after a bone scan. Pills that made me awake yet tired at the same time. My GP saying “Well, you know why we need to do some tests.” Going on holiday with some friends and knowing the moment I got there that I wanted to go home. Falling over on the ice. More tears. Delays. Feeling a lump in my neck. “Well, it doesn’t feel cancerous.” Crying with pain at the hospital. “It doesn’t feel like bone cancer.” All the odds stacked up in a rather large pile. Hearing afterwards that people ‘knew’ it was cancer. But how could they know when I didn’t? But it was. It is.
Bravery is not a word
I like very much
In relation to my illness
Or the way that I live.
I’m not a soldier preparing for battle,
I’m merely soldiering on.
So if I accept the news
That make my blood run cold
That change everything
Does that mean
That I am giving in?
That I am lying down?
That this is it?
If I accept
That I cannot change the outcome
I can also accept
That this is me
And I am stronger
Than anything that is thrown at me
Because I am me
And I accept that.
The first time round it was about “Getting Better” and “A Cure”. This time it’s about “Control”. Had my second opinion. So many questions. The use of unpleasant words: “Extreme. Tumours. Operation.” Sometimes I just feel so tired. So sick of all of this. This week tests my emotional reserves. The second opinion is on Wednesday. Today is Sunday. I feel ‘better’ again. I cannot control my cancer but I can control how I react to it. Repeat 100 times.
Back in Sicily it was results’ day. I went to work as ‘normal’. I worked like a dog, as normal. I’d asked Dr M to call A as I was worried about not understanding his words. So began the calls. Between every lesson I called A and it was a “Don’t worry.” And a “I haven’t heard yet. “ And a “You’ll be fine.” I’d almost convinced myself that the results would be benign. Almost. But not really.
Nerves like nylon. Nerves like steel. A day D-R-A-G-G-I-N-G to its conclusion. A day like no other. Then came the break before the last lesson. The call came. “I’m outside.” So I went outside the school and I saw A and he said, “I’m sorry. It’s cancer.” And I said, “Oh, ok, thanks.” And I went back into the school and I told everyone.
The last lesson. Personal pronouns. Listen to the song. Fill in the gaps. Play the song. Nothing compares 2 u. Nothing. Play it again. Once more. All together. Don’t cry. Not like Sinead. Keep it together. Go home. Make that call.
Nothing prepares you
Not all the worry in the world
Everything remains the same
Life goes on
The world doesn’t end
The sun still rises
You miss a beat but
Yet nothing is ever the same
There are lots of people in the room and a big cake on a table. It’s somebody’s birthday. The cake’s filled with cream and fruit and it’s 2006 and I’ve just had my first operation. They ask me if I want a slice and I shake my head. They say that I can’t go until I’ve eaten some. I try to eat a teeny piece so that they will shut up. I can’t find my mouth. There’s cream on my cheek. I go home.
I’ve been prodded and poked and tested and stared at. I look different. My accent is funny. People stare at me in the waiting room. Doctors and nurses say things like “Oooh, isn’t she pretty? Isn’t she sweet?” But not to my face. I feel like a doll. When they examine me, there are lots of people in the room. I wish they would go away. I feel small and embarrassed. I don’t want to take my top off. But I’m not scared. Not yet.
On the day, we bump into Dr M. He’s off to have lunch. He says he’s going to eat a big plate of spaghetti before he operates on me. I wonder whether he will drink wine. Red wine. Then I’m in the hospital and it starts again: prodding and poking; needles and pain and the fear starts to surface and I feel woozy but not in a good way. I feel asleep yet awake and my heart is thud, thud, thudding. The tears start falling but I don’t make a sound. I don’t move. I realize now that this is what I do when I am scared. I don’t move. I don’t say a word. I am still. I am silent.
And then the anesthetist appears and he’s got a huge, livid strawberry birthmark that covers one side of his face and neck. I bet people have stared at him all his life. I expect some people think he’s ‘ugly’. I see that somebody loves him because he’s wearing a wedding ring. And I see his eyes and they’re brown and kind. And he holds my hand and he says, “What’s the matter?” and I say “I’m scared.” And he tells me not to be frightened and he holds my hand.
Then there are bright lights above me and people in masks and he holds my hand. Then there’s more drug stuff but it’s only a local and my heart is still leaping and my eyes are still wet and he strokes my forehead and keeps on stroking. Then I feel something. “Oww!” And I think, “I don’t like this.” And I say that I can feel something and they give me more drugs. And it’s ok for a bit but then I can feel it again and they tell me that they can’t give me any more anesthetic. And I lie there and I feel pulling and pricking. My heart is racing faster and faster. Now I’m really scared, but it’s too late, it’s over.
I’m on a trolley in a corridor and the man is back and he holds my hand again and says that everything’s ok and I don’t see the strawberry, I see the kindest man in the world.
Nowadays, I rarely look back. Part of ‘living with cancer’ is dealing with the ‘now’. Being present. One day at a time. A little hopeful glimpse into the future. Not much looking back. The feelings and memories are too intense. But sometimes it’s good to remind ourselves how far we’ve come and what we’ve achieved. At one point I couldn’t see through the enormity of my situation, but here I am as lucid and sane and happy as anyone who is reading. So this next fragment carries on the story, and it’s called ‘I’m fine, don’t worry about me.’
I asked my consultant ‘How long?’ and she didn’t want to answer. So I asked again. She said ‘Well, how long do you think?’ So I told her and she hesitated and then she told me something that I didn’t want to hear. So I blocked it out and I went to see my parents and then I went home. I sent a text. Some people called. Some people didn’t. Some people cried. But I couldn’t feel anything. No, that’s not true. I DID feel something. I felt something awful and alien. All I thought was, ‘it’s happening to ME!’
Anyway A was staying so we did things. We travelled around London. I laughed. I saw some friends. I kept saying ‘I’m fine, don’t worry about me.’ Every now and again A would look at me and he would sob. And I would put my arms around him and say, ‘I’m fine, don’t worry about me.’ And of course the person who needs comforting becomes the comforter. I couldn’t cry because I thought I would never stop. Nothing felt real. Going through the motions. Terror. I felt like I was suffocating. Or drowning. I felt like Alice falling down the rabbit hole. I felt like I would never be normal again.
And then A went home. And I hid. I hid under my duvet and sometimes I would answer the phone. And sometimes I wouldn’t. I spent days lying in bed, the covers over my head. I couldn’t read. I watched dvds but I didn’t see anything. I remember thinking ‘I can’t go on like this.’ I looked at people on the tube and I wanted to scream, ‘I’m dying!’ But I said nothing. And the days yawned ahead of me.
I could feel the presence of cancer around me. I felt it saying ‘Boo!’ and ‘Aha!’. When I imagined it I thought of a black heart because my original ultra sound had shown something ‘abnormal’. And I had looked at the scan and had seen that the ‘abnormality’ was in the shape of a little black heart. And I had laughed and thought ‘Typical’! That was before the cancer was confirmed. But I ‘knew’.
So when I think of cancer, I think of something black. A blob. A misshapen heart. A fog. A cloud. An abyss. A blackguard. And I think, ‘Nobody wants you.’ And ‘Go away.’ But my black heart cancer just sits there. I can’t think of anything else. I am scared but I don’t want people to know that. So I say, ‘I’m fine, don’t worry about me.’