“Total Pain” – music therapy in palliative care

Kate Binnie is one of the participants at the Festival. Here she shares the kind of profound encounter that she has had as a music therapist. Pete sits on the edge of the chair, his face and bald head shining and sweaty.  He turns his palms up and out towards me:  “What’s it all about then eh, Kate?  What’s it all about?” He shakes his head sorrowfully, looks down and sucks his teeth.  I can see he’s anxious, his foot in its immaculate trainer taps against the carpet.  He’s moving constantly, adjusting clothing, wiping his face, shifting his weight around. “Pete, are you in pain?” I wonder.  He’s got that look of a woman in early labour as if something’s hurting down below.  But Pete’s got liver cancer and his distended belly is disease related, and now it looks like he might have a fever.  I make a mental note to tell the doctor afterwards, he probably feels terrible. Pete nods.  “It might be the gall stones, Kate, it might be, mightn’t it?” he asks looking at me over his cup of tea.  “Well” I say slowly, heart sinking. “It might be…. But I’m not a doctor Pete, I haven’t got a clue.  Is that what you really think?  Gallstones?”  I turn my own palms up towards him, as if offering the gallstones back over. We both know its not gallstones, but clutching at straws is something Pete and I go through together each week.  I sit at the piano, turned to face him on the stool and he sits on a chair beside me, or sometimes paces around the room when the pain or anxiety gets too much.  Sometimes we play the piano together, and make his words into fragmented songs, which he begins to develop, sing and take a pride in even if at times they make him cry.  We laugh too; he loves Depeche Mode and we have a lot of fun with an electric keyboard re-creating an 80’s pop sound that digs up memories of clubs, his first love and good times. Today however, he’s stuck, and the image we’re throwing around in the words and music is of a massive rock (a gallstone?) in the middle of the path ahead, which he cannot move or get past. Pete can’t tell his kids what’s going on.  He’s waiting for them to ask.  Young teenagers, two of them, same age as mine. “They see the chemo line going in, don’t they?  They know I been to hospital?  They’ll ask when they want, yeah?” Pete doesn’t want to tell his kids he has terminal cancer because he is still holding out for a new drug, someone mentioned something about a trial up at the hospital, and they’re finding new cures all the time.  He has a scan in a couple of weeks, that might be some different news so it’s best not to bother them now, just in case it’s all fine. The kids – who I’ve not yet met – will know all too well, but be terrified to ask.  They will collude with their visibly declining Dad, noticing he doesn’t eat much and sometimes vomits, but gets a bigger belly, sleeps more, cries occasionally and then shuts himself away, angry and ashamed. Their mum is strained, tired and often snappy.  She’s doing cleaning jobs on the side of her part time job and worried sick about cash flow.  Pete hasn’t worked for about 16 months.  Of course they bloody know. One time he doesn’t come to the session.  The next week he says it was because of an appointment, but later admits he didn’t want to come because each time we move inexorably towards the truth.  “What’s the truth, Pete?” I ask, sensing movement. “Well” he sighs heavily, looking at his hands, now yellow with jaundice, and turns them over and over.  “I’m gonna die, Kate, that’s the truth of it.  You know it, I know it, and the doctors know it.”  A pause.  “The kids know it too, I haven’t told em but they know”.  We sit there together for what feels like a long time and the silence is thick with a shared sense of relief. Then I play what we can’t say in words at the piano.  I sing too, no words, just some sort of lament.   Pete sits next to me on the piano stool and picks out the odd note.  When the music finishes he wipes his face and asks me what I think happens after death.  “I’m not sure Pete.” I cop out. “What do you think?”  He says that he’d like to see his Mum and his Gran again, maybe it’ll be like that, a re-union, a sort of party.  But maybe it’s just ….nothing. “Its funny….  It’s not really about the cancer is it, Kate?” Pete asks rhetorically, clutching a decimated box of tissues between his knees, sighing, exhausted, as our session comes to an end. I get the opportunity to spend a bit of time with Pete and family on the ward a week or so later.  He’s now pretty sleepy, on a morphine driver which buzzes intermittently, pushing in the opioid.  The room is filled with family clutter and noise; flowers, bottles of coke, iphones, enormous teenage boy shoes kicked off by the door.  The telly’s on all the time.  The oldest boy lays a large-handed arm across their mum’s shoulder as I come in, he’s the man of the house now.  I know all about them from Pete, who smiles as I enter:  “Here’s my musical agent…. Hello darlin!” he calls weakly from the bed.  He’s shrunk.  Being in bed in his pyjamas puts us on a different footing and I sit down quickly so as not to loom.  I sense suspicion from the wife.  Who is this woman who seems so familiar with her husband?  She comes over and sits beside Pete, taking his hand. So, I tell them - getting the nod from Pete, who hasn’t been able to say it himself even now -  I tell them how much he loves them.  I sing it to them in the music Pete and I created in our sessions, and during the music the boys go to Pete, hold him and their Mum and they all cry.  I am simultaneously part of this intimate tableau and utterly separate, witnessing and describing events like a one-woman Greek chorus. I see Pete once more a week later but he’s unconscious now.  His wife draws me in, and together we sit beside the bed.  I quietly hum the music of the songs Pete wrote, tuning into the rhythm of his breath, watching his collapsed chest rise and fall. I touch his warm, dry arm for a moment before I leave.