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.