How Not To Say The Wrong Thing To Someone Who Is Ill

Day 121

General status update

FEC cycle 6, day 6

Fatigue/weakness: continuing, but the other side effects are so bad today that I can’t do anything much, anyway, so it’s not really an issue.

Nausea demon: we had a 5am start, and he brought the Chemo Nano Rats with him- it’s Tormented Tuesday.

Anxiety level/insane euphoria (+/- 1-10,000): no longer anxious, just desperate, desperate DESPERATE for these last few days of torture to end.

Despair Demon: he’s out of the airing cupboard again, back here next  to me and whispering in my ear – he particularly likes the early hours before and after dawn, when I’m wracked with the nausea and toxic stomach, and there’s no one else around. He’s the voice of everything you ever did that has come back to haunt you, every failure, every way in which you have hurt and disappointed others, and he wants you to feel really bad about all those things. More than that, his aim is to kill hope - the thing with feathers – and convince you that there will be no good outcomes, that you are deluding yourself.

Chemo Muse: she’s agreed to give me today off as I worked hard yesterday, and because today I am in very poor shape indeed. I’ve asked her to take the Despair Demon out for the day, so I can keep my mind filled with good things, during what is going to be a very long and unpleasant day.

Chemo Brian: him, me, sofa, blanket, and a tab of Lorazepam- I’ve largely stayed off the sedatives during the worst days, but today I’m going to make an exception, because it’s still not 8am yet, and I have already been feeling like HELL for three hours now. Bring on a little benzo daze with Chemo Brian.

State of mind: the only good part of the day so far has been hearing a bird outside in the gardens, singing its little heart out, as I was grimly lining up all my meds on the table at 5am. It wasn’t a dawn chorus, it was just one bird, but it reminded me that hope IS the thing with feathers, and that this will soon be over, and that then I will be if not soaring, then at least swimming, away from all this. Splish, splash…

I’m feeling way too bad to write properly today, but there’s an article someone else has written that I’d like to share with you, as it’s the best piece I’ve ever read about what not to say to someone when they’re ill: it sums up exactly the entire problem of how some people make your illness about them, and add further stress to the nightmare that you’re trying to deal with.

Regular readers will remember that I suffered from a particularly egregious example of this early on in the chemotherapy treatment, at a point when I was at my very lowest ebb, and a close friend took it upon herself to write to me explaining how very difficult my illness was for her, how she was phobic about illness, couldn’t bear the fact that I was now all about the cancer, and therefore couldn't be around me until my treatment was all done, and how much she was suffering because I was no longer the old me and unavailable for jolly lunches like the one she had just had with another friend…

That email  upset me more than anything else anyone has said or done while I’ve been ill, and fighting for my life, and has simply obliterated what was once a close friendship. I should be a better person and rise above it, but my energies are needed for other things right now, and that’s the central point here; when you are dealing with a life-threatening illness, you do not have any energy to spare, and nor should you be expected to, for people who find your illness upsetting and insist on telling you about it. If you find your friend’s illness distressing, tell someone else about your feelings, not the person who is ill – you can only make them feel worse.

And that’s exactly what this article in the Los Angeles Times says, only much more eloquently, and with a truly excellent diagram. I commend it to you all.

How Not To Say The Wrong Thing To Someone Who Is Ill

Many thanks to my friend Dick Halsey, who brought this article to my attention yesterday after noticing how much it resonated with some of the posts on this blog.

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….