Inside group therapy for a lost and found tribe of blood cancer patients
Four months into treatment and feeling more and more fragmented and depleted, I know I need some new ways of coping. I need to do something, something with purpose, to help myself. I’m lucky enough to come across a very specific mindfulness course designed for people going through treatment for blood cancers.
This group feels different from the outset. We belong to the same tribe. A tribe of blood cancer patients. A smaller group of perhaps 15 people, the same people every week and formed with a very clear focus. We do have a brief check-in at the beginning, to see how everyone is, but then we have work to do. We have a workbook, readings, and a professionally trained, experienced facilitator to take us through the programme. I already feel contained and in safe hands. I feel the frisson of possibility. We’re here for a purpose, and there’s a collective sense of anxious expectation. We’re all willing to give it a try.
Everyone sets out in their introduction what they would like from the course. It’s agreed that we all want to feel better than we are feeling at the moment. A bit of calm, ways of managing anxiety, some momentary peace, some ways of coping. That’s the theme. The soothing voice of the group leader has already set the tone. She knows what she’s doing, and I can breathe better. There’s a welcoming gentleness in the air from the start.
The chairs are set out in a circle so we can all see each other and have someone next to us. We’re all a bit shy, as you would expect with strangers, but we have paper name badges, so it’s easy to start a conversation with someone if you want. It’s kind of impossible not to talk to someone once you’ve made the awkward move to read their name badge by leaning into their space. There’s nothing homogeneous in this group: all ages, men and women, different cultures and backgrounds. We’ve also come along with an array of blood cancers and are at different stages of disease. This makes each of us a slight curiosity to the others. I’m still trying to understand my own cancer and have little idea about anyone else’s.
I make a new friend who’s a similar age. He also has myeloma, but a more complicated, harder-to-treat type than mine. We meet every now and again outside the group for coffee, and one day, several months into the future, he will tell me there’s no treatment left for him other than palliative care. One day, Sandy and I will go to his wonderful 50th birthday party, where, although visibly tired, he will enjoy holding court in his garden, which is filled with flowers, gifts, and people who love him. I will sit with him for a while and then ask him how long he thinks he’s got. “It’s not over till the fat lady sings,” he says, and we laugh together until he says, “but I can hear her warming up in the background.”
'My poor body. What it’s been through, what it’s going through, what it will have to go through...'
At the outset, this group is given some simple rules about confidentiality and respecting others. Although it’s a large room, our little circle, placed carefully in one corner rather than the centre, to give us some sense of intimacy, already feels like a space full of possibilities. I’ve been on my own at home most of the time.
We are asked to begin to develop a closer awareness of how our body is feeling. We are introduced to a specific meditation technique, and, step by step, we’re talked through a body scan. I can feel the pulsing adrenaline of my anxiety as I sit in my chair, trying to stay with the scan. We visualise each area of our body slowly and lightly, hovering our attention over the separate parts from head to toe. I’ve done this exercise in my life many times before, but not since I became ill, and it feels like my very first time. I feel so disconnected from my body these days that I’m not sure if I can stay with it. At some points it feels almost unbearable. My poor body. What it’s been through, what it’s going through, what it will have to go through. I have intermittent urges to run, but just sitting in the chair in the relative silence, listening to the calm, encouraging instructions, has a strangely soothing quality. Soothing is what I need. I can hear others breathing. I can feel them trying too. There’s a collective tenderness in the room.
My racy, restless, agitated mind and body settle a little as I start to breathe more deeply. We’ve been told it’s okay if we can’t stay with the technique we’re trying, and that helps me. Just give it a go. It stops me trying too hard. Trying too hard to do something that should come so naturally—just breathing deeply. I start to feel less anxious. The anxiety gives way to huge waves of sadness, and when we open our eyes at the end of the exercise, there are tears streaming down my face. I find this happens each week and at home when I practise. The relief of sadness is refreshing after the stifling numbness and claustrophobic state of anxiety I’ve been stuck in.
This group offers a place to bring the awful feelings that can present themselves, every day and every night, in a never-ending encounter with the traumatised self. We are offered places to begin to put some of our unexpressed emotion. We’re encouraged to spend a few minutes a day practising the technique to try to simply increase our awareness of our body, and I do practise, every day. Some days I can’t bear sitting still with myself, never mind checking in with my body and feelings. On those days, I come to realise how much I hate my body. The last thing I want to do is connect with it. I’d rather avoid these feelings. On other days, I desperately want to get back to my body and I try to stay with the practice, in the hope I can find some connection to myself. Those are the days the tears come.
'I think about all the things I still need to do in life. The unfinished and unsettled parts of my life constantly play on my mind. Cancer feels like the full stop...'
I’m never quite sure what will come up in the group. Others, often those much further on in treatment than me, express some of the feelings and fears I can’t bear to even think about. The honesty builds with the trust, and as the weeks go on, I’m able to be more vulnerable along with the rest of the group. This shared vulnerability feels touching. The group is giving me a gateway into a world where my feelings are able to be felt again, where I can begin a conversation with my body, even if it feels broken. Especially because it feels broken.
Over the eight weeks, we try different ways to slow down and be connected to whatever is happening for us. Mindful walking, gentle yoga, and breathing exercises are the mainstay. The readings, from philosophy, psychology, and poetry, have a theme of reflection on pain and suffering, but the focus is always to encourage us to stay in the moment and accept whatever is coming up. I start to connect with how angry I am with my body. I feel betrayed by it. It’s let me down badly. I feel frustrated and then hopeless about the state I’m in and the exhausting demands of my treatment regimen. It’s all so messed up, I’m messed up, it can’t be made better. It’s all pointless. What a nightmare. I feel so angry I didn’t catch my cancer earlier, before it started to affect my bones. I should have seen it coming. Then the anger fans out as I think about all the things I still need to do in life. The unfinished and unsettled parts of my life constantly play on my mind. Cancer feels like the full stop. Now it’s too late to make changes, sort things out, do the things I’ve been putting off, even if they might never have happened anyway. The possibilities seem eradicated. I’ve taken too much for granted. I have a hundred recriminations.
At times I feel a simmering rage.. Feelings that are encased in guilt and shame. The guilt is because I tell myself these thoughts and feelings are somehow indulgent on my part. Why shouldn’t it have happened to me? I’m not special in any way. I worry about how much I might be feeling sorry for myself and beating myself up. And then I feel bad about that. I feel ashamed because there is something wrong with me that might not be able to be fixed, and my shame is compounded by the humiliation and assaults on the self-esteem that are all part of being a patient. This torrent of powerful feelings is starting to weigh me down. I find myself despairing.
I bring some of my angry feelings to the group discussion one day, and the facilitator talks with me afterwards. I tell her I think that having cancer is making me hate myself. At times I feel stuck in the self-hatred, along with feelings of despair and hopelessness. I’m going through periods when the hopelessness turns to apathy. I don’t care anymore, because what’s the point? Then I feel depressed. I worry I’m becoming lost and isolated. There’s very little light in my inner world, just shade and darkness. I’ve never felt like this before.
'At times, as the hopelessness lifts, I can allow myself to actually feel my gratitude for the advanced medical treatment I’m getting and for being alive...'
She suggests I look into the practice of self-compassion and gives me some relevant articles to look up by an expert, psychologist Kristin Neff. When I start to read them, I’m immediately drawn to the ideas, as they’re founded on the basis that you should try to make space for all your feelings, whatever they may be, which, as a psychotherapist, I understand.
Treating yourself kindly is something we should all instinctively do, but I’m in such a dark place I’ve forgotten this. The more I focus on it, the more I reveal to myself how much I’ve become caught in a spiral of beating myself up. I catch myself doing this and find that gradually my periods of self-hatred shift to a more manageable self-pity. In the face of all that’s going on, I see it’s not so much that I feel sorry for myself, but that I feel sad for myself. I need to give myself a break. The more I can allow myself some self-empathy, the easier it becomes to see how much I need to treat myself sensitively and kindly.
In response to all the trauma, I’ve become tense, slowly shutting down emotionally and shutting others out as a means of surviving. Now I can feel myself softening. I know I’ve a tendency to be hard on myself, so this is a big shift for me. When I waver, I tell myself this kindness is what I deserve and what I need. As I get better at it, I notice how much more I can allow others to be kind to me. I deserve that too. I feel quietly inspired by this whole idea.
At times, as the hopelessness lifts, I can allow myself to actually feel my gratitude for the advanced medical treatment I’m getting and for being alive. But I find part of the practice particularly difficult: the part that comes directly from Buddhist philosophy on suffering. It’s the idea that we should try not to over-identify with painful thoughts and feelings, but rather hold them in “balanced awareness”. This requires a way of thinking that I just can’t muster. Only a few months into treatment, I’m not able to take it on. I can’t get enough distance from my feelings to see them in that way. I’m having difficulty even knowing how I feel, and I’m trying so hard to connect with my body that observing my thoughts and feelings is too much of a stretch.
But I do try to take something from this idea. I know that being consumed by my painful feelings isn’t helping me, so if I can just begin to notice other, less painful feelings coming through, however fleeting, it might help. I think of it as trying to broaden my feelings. Now and then, in the group sessions and practising at home, I have small moments of feeling okay. I clutch at this. Feeling momentarily okay is like a chink of tentative light amidst the helplessness. Feeling okay feels like being okay, and it allows me to dare to think about coming through everything and out the other side.
An edited chapter taken with kind permission from The Feeling of Cancer: A psychotherapist's story of living with incurable cancer by Sandra Russell (Nationwide Books, $35), available in bookstores nationwide.
