The kindness of strangers

Day 56   

General status update: 

Hair: I am not going to count how many hairs are left on the comb every time I run it through my hair, because that would be the act of a crazy woman. Also, since I don’t know the sum total of all the hairs that were on my head to begin with, then I can’t subtract the daily number and then calculate the daily percentage hair loss or make projections as to total accumulated hair loss over the next 60 days or so. With graphs and things, on Excel. I have better things to do with my time, so it’s a very good thing I am not going to attempt any of these calculations. Obviously. 

Nausea demon: I thought he might have become completely dormant, and stopped taking the meds today, whereupon he woke up, yawned, stretched and kicked me in the stomach. 

Chemo Muse: She doesn’t like Excel, and numbers. She wants me WRITING. She says that as far as she knows, there is no Chemo Excel Muse. She doubts Bill Gates would allow it, frankly. 

Chemo Brian: He doesn’t like my Gregorian chant, so he’s been countering with The Doors. He actually witnessed the infamous incident where Jim Morrison whipped his willy out at a concert, or so he claims. Am beginning to think that Chemo Brian’s brain, what remains of it, is so scrambled that he is now just mentally Photoshopping himself into any famous event in rock history that pops up into his head. He’s very convincing, though, so it’s hard to be sure. 

Sleep, lack of: you know, we may have to delete this category soon, because it only now seems to apply to the first steroid-fuelled couple of days of the cycle. 

Fatigue/weakness: Annoying me a lot, this cycle.  I want to be strong again. I want to swim 100 lengths of the pool without stopping. Or, as a perhaps more realistic goal for this coming week, I want my legs to stop being quite so wobbly. 

Anxiety level (1-10): 10 whole days until the next chemo cycle starts, so this is as good as it gets. 

State of mind: stateless, it is forced to sleep upon seats in cerebral airports which it can never leave – the mental equivalent of Hotel California.

 

It’s the first Monday morning in September, 2012, four days after I was diagnosed with breast cancer; R has gone to work, and I am alone in the flat, deciding what to do next. I don’t currently have a job to go to; since I returned to the UK a year earlier to make a life with R, after taking several years out in Ayvalik to restore my house and camel barn and create the library, finding employment has proved challenging.  

Earlier in the year I worked for 3 months on a short term research contract for a demographic think-tank in Westminster, but my field is a narrow one, with jobs in short supply, and my age is against me. Over the summer I have been spending a great deal of time – 26 miles worth of time - swimming, and have been wondering about doing some kind of retraining. That will have to be put on hold for the time being, while I try to deal with the cancer. 

I’m sitting at my computer, and on the desk is the card that the Breast Care Nurse gave me last week, from ‘The Haven’, a charity providing support centres for people with breast cancer. I find The Haven's website, and start to read:  

The Haven was founded in 1997 by a woman called Sara Davenport, after her children’s nanny was diagnosed with breast cancer, and she realised how very little support there was available to help women with the devastating emotional and physical side effects of the disease and its gruelling treatments. Since then, funded entirely by charitable donations, it has gone on to establish three centres which provide, literally, a haven for those affected by breast cancer, and outreach services for those who are unable to visit The Haven in person :

‘We provide, completely free of charge, a wide range of therapies which help people to deal with the physical and emotional side effects of breast cancer. Our specialist nurses and experts in nutrition, exercise and emotional support provide tailor-made programmes for every person who comes through our doors. Our outreach programme, 'Haven at Home DVD', has been specially developed for people who can't get to our Havens so they can benefit from our unique care in the comfort of their own home.

Our team is committed to improving the lives of people affected by breast cancer. Our staff of clinical experts, experienced fundraisers, communications experts and highly trained therapists work across our Havens in London, Hereford and Leeds and are supported by our administration and reception teams. 

There are two easy ways access our free Haven programme either by booking an individual appointment with one of our specialist nurses or senior therapists or by coming to one of our Haven Introduction Days. Either way, there is no need for a referral of any kind - you can just ring us to make an appointment. We look forward to hearing from you. 

At this stage, the physical side effects of the disease and its treatment are some weeks in the future, but I am already aware that my emotional state is bordering on the deranged: some kind of auto-pilot in my brain enabled me to write the cheery, positive-sounding email to my family and friends a few days previously, reassuring them that this cancer is a fairly minor inconvenience, and that it will all be over by Christmas (the unlikelihood of which should have been apparent to me, even then, by historical analogy alone), and the research I have started into cancer is keeping me busy, but even so it is all wrong inside my head, which feels as if it might explode at any time, and I am sitting here alone and terrified, and I know that I need to get help of some kind, soon. 

The London Haven is just down the road in Fulham, and it says here on the website that you don’t need a referral, you can just phone them. It says that they are looking forward to hearing from me, so I should phone them, shouldn’t I?  

 I pick up the telephone and, with shaking hands, dial the number.

When a woman answers, brightly, cheerfully, asking how she can help, I am unable to speak. Tears start rolling down my face and I start making incoherent sobbing, choking sounds.  

‘Hello, hello? Are you alright?’ 

Eventually, I manage to get out a few words.  ‘I’m sorry, I’m sorry…’ 

The woman at the other end couldn’t be kinder: ‘Don’t worry, that’s what we’re here for. Now, how can we help you?’ 

‘I… I’ve just been diagnosed with breast cancer. I want to come and see you. Please.’

‘You sound quite distressed – we’re pretty booked up today, but I can try and find someone to see you this afternoon, if you’d like to come in today. Or tomorrow morning – whatever suits you best.’ 

Just making this phone call, just acknowledging that I need to make this phone call, has already been a huge mental effort, so I decide to leave it until the following day to take the next step. An appointment is made for the following morning, and I feel immense gratitude to the woman on the other end of the phone for her kindness; at this moment I have no way of foreseeing just how much and in how many different ways, during the painful months ahead, I will come to depend on the kindness of strangers.

If you see me walking down the street, walk on by...

Day 31:  

General status update 

Hair: this is getting boring, isn’t it? No drama – no change. The one thing I still seem to be hanging on to, strangely enough. 

Nausea demon: He took pity on me today, given that it’s not much fun shooting fish in a barrel. A quick look on his internet history whilst he was out jogging reveals that he has been frequenting internet dating sites. This should be interesting.

Chemo Muse: Even she doesn’t like to see a grown woman cry; she patted my shoulder, awkwardly.

Chemo Brian: He held me while I wailed into his capacious chest. 

Fatigue/weakness: Overwhelming, debilitating. I had no idea how lightly I got off during FEC 1.  

Sleep, lack of: n/a 

Anxiety level (1-10): whatever 

Grief: Mourning the Old Caroline, taken away without my consent.  

State of mind: F*** it. All of it.

 

This is the first day, in 31 days and nights of chemo, when I just wasn’t going to bother to post; I'd had enough. But R suggested, rather firmly, that it might make me feel a bit better, so here we are again.

The last few days have been terrible, with the chemo cycle at its height, and the Chemo Demons wreaking their worst, but it wasn’t the physical torment that finally broke me, or that fact that I am now so weak and overwhelmed by numbing fatigue that it is hard even to get up off the sofa and walk from one room into another.

It was an email from a dear and much-loved friend.

One of my closest friends -  not one of my oldest friends, but someone with whom I have shared a great deal over the last four years, including all the secrets of my heart -sent me an email this morning, an email that made me break down and cry.

 I won’t quote it word for word, but what it said, in essence, was this:

‘I went out for lunch with a friend yesterday, and it reminded me how things used to be with you, when we would sit and talk for hours. I so miss the old funny, witty, Caroline – I miss our talks about love and life and books. I really admire how you’re dealing with cancer by writing the blog, and talking about it – I know that you have built yourself a big circle of support, but I can only wish you well from the periphery. I have a phobia about illness, and now those talks we had have been replaced by the evil big C - you’re all about the cancer.

I want the old Caroline back, and until she comes back, I can’t really be at the centre of things; and in the future, you will need someone who doesn’t remind you of the bad times. I want our friendship to still be about all those other things,  that will return to you when all this horror is over. Don’t let cancer destroy who you are. When this is over, I’ll always be around and be your friend.’

 Yes, I miss the old Caroline, too: she was taken away from me without my consent, and I doubt if I’m ever going to get her back in her original form.

I grieve for her every day, but not all the time, because most of what little energy I now have is taken up in the business of trying to stay alive. No, I can’t maintain friendships in the way I used to, because right now, I have to find a way not only to survive the cancer, but to survive the ‘treatment’ without losing my mind. Writing the blog is a coping mechanism, and if that makes me ‘all about the cancer’, well - actually, that’s just too fucking bad.

I’m sorry if the thought of my illness upsets you, and if hearing about how I spend my nights vomiting makes you uncomfortable – but hey, no one is forcing you to read the blog. Or to write an email telling me how distressing it is for you to have to interact with me now that I am so visibly and audibly bearing the stigmata of cancer.

I don’t expect people to be there for me endlessly whilst I’m going through this; I’m happy to receive support when it’s offered, because this is the hardest thing I have ever had to deal with, but I don’t expect it, or demand it.

We all are who we are, and some have more capacity for empathy than others; we all have busy lives, and there is a limit to what we can do. If someone needs quietly to drift away from me right now, then no harm done.

But there was something my grandmother used to say, which has always struck me as remarkably sound advice: if you can’t say anything nice, then don’t say anything at all.

Because I miss the old Caroline, too, more than I can possibly say.

And having it spelt out to me in writing, so very clearly, just how much I have changed, what I have lost, the difference in how others perceive me, broke me today in a way neither the cancer nor the chemo, separately or together, had previously been able to do.

So if you see me walking down the street, and I start to cry each time we meet, walk on by, walk on by….