This podcast contains the personal stories, opinions and experiences of its speakers, rather than those of Breast Cancer Now.

I've just finished a brilliant conversation with Helen about grief. And I think one of the things that really came across from this conversation was the idea that there can be no grief without love. And sometimes the biggest, saddest, most difficult feelings in our life are almost matched by the biggest, happiest, most joyful feelings of love. We also talked about the idea that grief is not just when someone dies. Grief can be any loss and that can be from having a breast cancer diagnosis. It can be the loss of the life you thought you were going to have. It can be the loss of your hair. It can be so many things. We do touch on some quite heavy topics in this conversation. We talk quite a lot about death and about grief, but hopefully a lot of it is in a very hopeful and joyful way. I hope you will find some of that hope and I hope you will find some of that joy that can sometimes come alongside grief as well. I really hope you enjoy this conversation with Helen.

Today we're speaking to Helen, a psychotherapist and campaigner who is living with secondary breast cancer. Helen is here to talk to us about grief. From the grief she's experienced from losing some of her dearest friends to cancer, to the grief of losing the life she expected to have. Helen is uniquely qualified to talk about grief because she's been on both sides of it as a patient and as a psychotherapist. Helen recently trained in grief tending. So we'll be finding out about what that is and how it can help us to manage the grief that is often part and parcel of a cancer diagnosis. Helen, welcome to the podcast.

Thank you very much. Good to be here.

How are you today?

I'm good. I'm good. Yeah. I feel pretty well today. No fatigue, no aches.

Yeah.

Sun's in the sky. No change. It feels good.

So you were diagnosed in 2020 when you were 52. Could you tell us a bit about your diagnosis and where you were in your life at that time?

Yeah, so yeah, I was 52. It was COVID. I'd sneezed in the March coming out of the shower and felt a crack and heard a crack in my back and had no idea what it was, but just thought, you know, I trapped a nerve or something. Didn't go to the doctor because it was March 2020. So nobody was going to the doctor at that point. And it was really painful for a couple of weeks, like paracetamol wouldn't touch it painful. And then it kind of eased and I didn't really think about it again. And in the September, no, in the July, everything opened up again a little bit and I have bad fibroids and I wanted to hysterectomy because I couldn't run anymore. I couldn't exercise anymore. I was really getting in the way. And that morning I was going to the doctor. I'd noticed a leaking in my right breast. So I just happened to mention that while I was there and she said, oh, we'll put you through. I don't think it's probably anything.I think she was probably reassuring me at the time. Put me through to the breast cancer centre in Brighton and two weeks later in August, I went there. They said I had a mammogram. They said you need an ultrasound. They said you need a biopsy. And straight away he said it. I don't think it's good, you'll know in two weeks. In the meantime, I went on a yoga retreat and I spent three days on those big Santander bikes, cycling around London with my daughter and then went back to get the results and they said, yep, you definitely have breast cancer, but it's not in your lymph... You're not somebody, the words were actually, you're not somebody that we're gonna lose sleep over. So I went the next week for a CT scan to prepare for a mastectomy and they found it was all through my spine and my ribs. So that was it, pretty much straight to secondary. I had one hole in my spine that was just held together by a hair's breadth of bone. And the nurse said to me, mustn't lift anything but diamonds or wine for at least six months. And given that I'd been on a yoga retreat and on the Santander bikes, I was pretty lucky, I think, not to have broken my back and had spinal cord compression.

Wow.

So that was, yeah, that was the diagnosis.

So you were diagnosed essentially with primary and secondary breast cancer at the same time. Yeah, there was a week in between the two.

What we call de novo, which is basically when you're diagnosed straight to secondary breast cancer. So what was the course of treatment? What was, what happened next?

They put me straight onto Letrozole and ribociclib at the time. My liver didn't like the ribociclib at all, had two or three months of that, can't quite remember. So they sought me onto palbo, which doesn't count as the second line because they're both, uh, the ciclibs are in the same family. And the palbo I've been on now I'm on dose 50 next month.

Oh, wow.

So I've been on that ever since and palbociclib, bone-strengthening injections. I had Zoladex but I've now had my ovaries out so I don't have that anymore. I'm also now on blood pressure tablets because the palbociclib has made my blood pressure really high. So yeah that was the treatment and it was pretty much as the oncologist said a handbrake turn into menopause.

Wow.

Which it really was yeah. The worst bit I think was that I didn't see my family and friends because we were all so worried about me getting COVID that everybody stayed away. So I think I'm interested in terms of, I know we're going to be talking about grief and in some ways I never got that period or we as a family never got that period to grieve together because we just weren't spending, we were very deliberately spending time apart. So there were a few kind of huddled meetings with friends at the bottom of the garden under blankets, but I think everybody was in shock anyway.

So this was an even further shock.

Yeah, and it was pretty lonely. And my children had both just gone back to, so one the week before my diagnosis, one the week after my diagnosis, they both went back to university. I was really pleased that they had gone back because they didn't have to worry about me. But also it was just terrible because I didn't know how long I was going to live. And they weren't there and I couldn't go and see them and they couldn't come back and see me until Christmas. And then Christmas was kind of, you know, they were really bound to not see their friends even though everybody else was trying to get together in field somewhere, you know, it was really hard for them to see their friends and keep me safe. So it was an incredibly stressful time. Looking back, I can't quite believe that we went through it.

I was diagnosed with secondary breast cancer a year or so after we came out of lockdown. But I am constantly conscious of the fact that I need to make the most of my life because I don't know how long I'm going to live for. So I can't imagine being in a situation like lockdown where you can't do all the things. And so you're like, I need to make the most of my time, but I can't go to a restaurant. I can't go and visit these friends. can't have that holiday. Can't do anything.

Yeah. And actually, I mean, I really can't remember much about, I think probably the first six months or year, I haven't got very clear memories about, and it's probably a combination of the shock of cancer and the shock of COVID. I think too, because my spine was so fragile, I probably wouldn't have been doing that much anyway. I really couldn't lift anything. It felt really dangerous to go anywhere. You know, I was frightened if I went for a walk in the woods near my house, I was frightened that I was going to get knocked over by dog or something, you know, once I'd seen that photograph of the sliver of bone, I was, I wouldn't say I was quite housebound, but I was really frightened until I had radiotherapy on it and the bone grew back and that's been... quite miraculous, but the rest of my spine's pretty moth eaten still.

Wow. And so how are you physically in terms of obviously that the spine is a lot better?

Spine's a lot better. That hole is filled in, as I say, the top and bottom are pretty moth eaten. I think I've got used to the symptoms now, so I don't notice them so much, but I've definitely put on a lot of weight because of the medication, really stiff, really achy. When I think about it, I know that I am, but I think I've got used to it now. But I notice I go to Pilates and I go to the gym and when I have to get off the floor, it takes me a lot longer than most of the other people in the room. So, yeah, I know that I'm very, very stiff and achy compared to how I normally would be. Incredibly itchy skin. I don't know about you, get so dry, my hair's so dry, my skin's so dry, so I'm kind of itchy all the time, which drives me mad. Yeah, for me the first year or so that I was on ribociclib, my skin was really, really itchy, but in patches where I would just itch it to red raw, which is a really horrible side effect. It probably doesn't sound like much to people listening, but actually itching just drives you mad. Really drives you mad. And I don't think it looks very, you know, I become aware that I'm just scratching and scratching in front of people and I don't think that looks great. So I suddenly get conscious of it and a bit embarrassed about it. But now I'm doing really well, you know, I'm still, so it's nearly five years, four and a half years, still on palbociclib. As I say, I'm walking a lot, I'm exercising a lot. I have to be careful. I can't really twist or flex like when you curl your spine in Pilates and yoga. I've got to be really careful with that because I don't want it to crack but I do what I can and I generally feel well. Yeah, itching, stiffness and fatigue are my main symptoms now.

I consider myself lucky, which some people won't understand when you've got secondary breast cancer, but because I was diagnosed with breast cancer and then was cured and then had many, many years before it came back, I consider myself lucky because I had that time. But you got a week which is no time at all, that doesn't count. How does it feel to go straight to secondary breast cancer diagnosis and to not feel like you even had a chance to be cured?

When I think about it, I think I'm probably still shocked. I think four and a half years later, I'm probably still shocked. Like it just feels unbelievable. I didn't even know that secondary breast cancer existed. I knew so little about it and there was so little information out there that I kind of knew the basics about it and I knew what to look for and all of those things, but I didn't know. When they told me, I was like, what is that? I don't, I don't really understand. And when the doctor said it's stage four and that means it's incurable and kind of looked at me with that face, it's like I can remember that sort of indelibly printed on my memory, his face. Yeah, it was so shocking. And I think I probably walked around in shock for some time and then of course had to tell everybody. And that was horrendous having to tell my kids and having to tell my parents. Just horrendous. And still is because people still don't know about it much I think. So you know I'll meet new people and they'll know a little bit about it or I need to tell them or something and you see I mean I'm sure you have the same you see people's faces and I look well. So they can't believe it.

Yeah, absolutely.

Yeah. It's kind of confronting every time. I call it having a cancer bomb in my hand. I feel like I can, you know, any dinner party, any pub night, whatever it is, it's like, if I want to, I can throw the cancer bomb on the table if I really told the truth. And it shocks people.

Yeah, of course.

Every time.

And what about you? How is your mental health affected and how have you found... What coping mechanisms have you found?

I think the mental side of it has been the hardest. And partly because I have been fortunate so far and haven't had to have surgery. I haven't had a lot of really debilitating physical issues. And the physical issues add into the mental thing anyway. the mental thing has definitely been the hardest part of it. The weight, the psychological weight of carrying it. You know, I feel so different from my friends. It's like I've got this thing that just puts me in a different place to my friends and increasingly so really. So I feel a bit separate from people I used to used to be very close to. My analogy is like five years ago, I didn't know whether it was going to be a bus, a car or a plane or a train that was going to kill me. And now I know it's going to be a bus and I know it's on the road and I know it's kind of at the top of my road and there's a bunch of saboteurs who have flattened the tires and that's my cancer team. And I'm now kind of living at the bus stop and every four or five months they give me a ring and say, all right, the tires are still flat. But at some point, you know, the people are gonna come and get the tires on quicker than they can flatten them and it's gonna come rolling down. And I don't know if that helps to express the kind of pressure that I feel I'm under all the time or this sense of threat that's there. And that's a really difficult way, I think. But I am really grateful for my work. I'm a therapist, so I've spent a lot of years kind of learning different psychological perspectives really have helped me more than techniques in some ways. It's just a kind of way of looking at the world and approaching death and illness and loss. And I do all the things that we know we're meant to do. I eat well, I exercise, I walk. My dog is my most important cancer support team member. I still work, which I'm lucky that I do a job that I love because it must be awful to have a job that you don't like if you're in this situation. I do some charity work, I do some campaigning. So I keep as engaged as I can.

And how has having secondary breast cancer changed, if it has changed your approach to life?

I don't think it's changed my approach to life as much as it's changed my approach to myself. So I used to be pretty hard on myself. My critical voice was really loud and could get really loud. And when I was 50, I kind of decided that I had to stop. It was like, OK, I am done with all that. That's like a young woman's game. And I am not going to do that anymore. I am going to be a liberated older woman who is not going to spend time beating herself up any longer. And I was really up for getting old. So that's been part of the devastation really. I wasn't somebody who was thinking, oh my god, I'm 50. I was like, great, I'm 50. Let's get on with it. So I think it's fast tracked that it's kind of turbocharged that attitude. And now it's like, really am just, I slip sometimes it's not always easy, but I really am trying to be much kinder to myself and much more brave and much more confident, I think, and just grab life. As Nikki said, go grab life and do what I can. I think it's changed my attitude to time more than anything. Time feels precious. It's like a feeling of preciousness rather than a knowledge of it. But it also feels more pressured. So that's both a good thing and a difficult thing. I feel motivated a lot. Also, it's really hard to decide what do I really want to do? Where do I really want to go? What can I stand not to do?

Let's move on to grief.

Yeah.

Is there a way that you can explain to us what grief actually is?

So I looked up the dictionary definition of grief and what it said is a great sadness, especially when somebody dies. And I kind of agree with that, although I... prefer the word sorrow to sadness. I think sorrow kind of captures the depth of grief more than sadness. But I also think it's a bit limited because of course when somebody dies, it's the most awful grief. But loss comes in loads of different ways. And so I think holding it to that definition isn't very helpful to those of us who are experiencing a different kind of loss. In my work, it's really amazing how many people we find that grief is at the centre of emotional pain or loss is at the centre of emotional pain. And because we think grief is attached to death, they kind of don't recognise it and they don't recognise that what they need to do is grieve or mourn or feel sorrow for the thing that they lost or they never had. So I think it's quite important to extend that, that grief is, I would say, a really great sorrow for something that we've lost. And I'd also add probably something we've lost that we loved or that we valued very, very deeply and I'll come back to that in a minute if that's alright. I think that's where it's relevant to a cancer diagnosis is extending that definition of grief because I haven't lost anybody but I have lost the life that I had. I have lost the body I had, I have lost the future that I believed I was going to have. We lose so many things. I've lost the friendship groups that I had. I've lost that commonality with my friends. You know, my losses aren't around the death of a person, but they are losses nonetheless. And they are things that I feel grief for and I need to grieve. There's a really lovely podcast with Krista Tippett and Nick Cave. And they talk about Nick Cave lost two of his sons. And so he's kind of, you know, done a deep dive into grief, both personally and philosophically, I think. And they talk about it being the common thread that runs through humanity and saying that feeling grief and sorrow and longing aren't things to be fixed. It's not a failure. It's nothing broken. It's the human condition. It's the thing... And actually, it's the thing that binds us all. It's the thing that connects us all. And sometimes I think about it and I think about if I imagine the road that I live on and I think if I knocked on every door, the one thing that most of us would have been through is loss of some kind, whether it's illness or divorce or death or just that life hasn't turned out in the way you expected it to. And I think we don't often think of it like that, that it really is the thing that we all share. And I think that's really important because when I think of it like that, if I think about us in this room or you know, the street that I live in or all of us in our breast cancer community, it kind of automatically brings a lot of compassion and a lot of feeling of connectedness towards other people. Whereas if I don't think about it like that, I would feel much less connected, much less curious probably about them. And I think there's something in that about where grief is about love. I think we grieve the things that we've loved, we grieve the people that we've loved and we grieve the life that we've loved. or we grieve the life that we would have loved to have had. And the depth of our grief is the depth of our love. If it's not something that we've really loved, then the grief is probably less. So I think it's really important to link those two things. And also to see that if we're all connected in grief, then meeting in that place can also be an act of love. So there's actually something about grief that gives a possibility of kind of human connection and intimacy and care and kindness. That's a really amazing thing and that we don't really do very much in this culture.

Wow, I mean, I don't know if I've ever thought about grief in that way. Like, as you said at the beginning, you often think about grief in terms of when someone has died. And I think of it in me as a feeling, like that stomach dropping feeling sometimes of deep, deep loss. But I don't think I've necessarily thought of it so much in the sense of love and connection with other people and compassion, compassion for self. There's a lot in there to explore.

There's a lot of the poets, there's all sorts of poets who talk about love and joy being connected and talking about that the depth of our grief is equal to the depth of our joy and that actually we can't really experience joy without experiencing grief and sorrow. And it's a shame that we've lost that perspective on it, I think, in a kind of medicalised, diagnostic society. We've kind of lost that really human perspective on what is something that every single person experiences. It's better to have loved and lost than never to have loved at all. Because I think, and I think what we're saying with that is that you can go through life trying to protect yourself from grief, trying to protect yourself from sadness. And that might mean not doing the things, not taking the risks, perhaps not being in a relationship because you're scared that you're going to get hurt. But actually it's often better to take the risks and do the things that bring you the most joy, even though there is a risk of grief and sadness and loss. Because those things are so well intertwined. We can't really, I know this intimately from my work, we can't really turn down one emotion and not turn down the others. It's like there aren't individual switches for each emotion. So if we try to numb ourselves to one particular emotion, we're also going to do that to all of the others. So how... where we limit ourselves in how we can feel the painful things. Of course, it makes sense on one level that we're going to do that. Nobody wants to hurt, but we're human and life is going to bring hurt. And the more we try to numb ourselves to that or not feel it, the more we're also going to numb ourselves to everything else and to joy and fun and pleasure and happiness. And then cancer just brings like when the oncologist said, we're going to give you a handbrake turn into menopause. What he should have said is, we're going to give you a handbrake turn into grief and fear and loss. And he didn't warn me about that bit. And that really was the case. You know, we've mentioned already the kind of loss of future plans. I absolutely love my work, had a 25-year plan. I've already had to give up elements of that that I would have otherwise have grabbed. I haven't necessarily got the emotional bandwidth to take on new projects and know that I can commit to them. Committing to things is frightening. So a loss of the ability to make plans and that might not sound very significant, but it really is. You know, when you think I can only really make a plan six months ahead, because making a plan a year ahead is quite scary because I just don't know whether I'm going to be here or be well enough. That's quite a weight to bear. And I sort of feel like I've lost innocence, like it was probably naïve. But I think I was thinking, well, I am, of course I'm going to die, but it'll probably be in 20, 25, 30 years time. And sometimes I really long for that innocence back. And I'd love to wake up in the morning and think, oh, you know, it's just a day and not have this kind of fear and this pressure and this wondering. And you long for old age, don't you? Like for me, that's the thing that I would really love to have is old age with my husband. More than anything. More than anything.

And as you said before, you turned 50 thinking, great, I'm turning 50. But so many people, I hear people turning 30 and saying, oh, well, I'm old now or turning 40 and, know, being really down on it. And I actually find that quite hard as someone who is desperate for age.

Desperate for age. I mean, I would give anything. I have a great neighbour who the first year after I was diagnosed, he came out and complained about his birthday on his birthday. I was like, you can't, don't do that. And every year now he comes out and he says to me, "every year is a privilege, Helen!", on his birthday. And I really appreciate that. And I heard a great quote from Jane Fonda. She said, anybody can be young, but only the lucky get old.

Totally, yeah, absolutely.

I long for that.

Yeah. As somebody who engages with the breast cancer community and the secondary breast cancer community, that does unfortunately mean you've lost a lot of friends. You've made friends with people who have then died, like your friend Paola Marra, who died in 2024. She had stage four bowel cancer, but she also had breast cancer. How is the grief different when you lose someone to a disease that is similar or the same as the one that you have?

It comes, you know, rage is a really big part of grief. Rage and anger, I think is always a big part of grief that we really need to acknowledge and care about. We're not always very good at being angry, but I think it's an important thing. And it really brings rage because these people are vibrant, exciting, wonderful, life-enhancing people. Last year actually I had somebody who said to me, "is it a good idea that you meet all these new friends?" And I was so angry because I thought, you have no idea, like I need, they bring community and companionship and a team of people who get it and they're so important and also they're just wonderful people. And of course I don't click with everybody who's got secondary breast cancer. It's inevitable, but the people I do, it's just so vital and they enhance my life. The dark humour we can have, the jokes, the things that we can say that nobody else would dare say about life and death. Just the understanding that we share and the fun that we have, knowing that life is short and precious. The mischief that we can get up to together is not like it is with anybody else. It's really devastating. And the other thing that's sort of different, I think, and particular about people dying of the same thing that you have is the fear. It also increases the fear because I can't help but watch how people die and think, wonder if that's how I'm going to die. Or I wonder what's going to happen to me or, is that what it's going to look like? Or, you know... so the fear is also increased. And that can be quite confusing. It's like there's so many things that my brain is trying to process at the same time about my own experience, about their experience, about my loss, about their families, the unfairness to them. It can be quite overwhelming. And I also know that 31 people die of secondary breast cancer every day in this country. So I know a handful of them. And it can feel relentless. And the other thing about having been diagnosed for four and a half years is that I suppose at the beginning we were a little bit like colleagues. Like we would meet at events or something and it's like I'm really glad to have you all here and you're kind of my team and we're all in the same boat but we're like colleagues. And then suddenly four and a half years later it's like oh you're not my colleagues you're my friends. Like I really care about you and I really treasure you and you're really precious to me. Yeah, I'm losing my friends now. And that's just, that's just tough. It's just really hard.

You've recently been on a grief retreat. What was that?

That was, it was the most extraordinary five days I've ever spent. think, um, last year, I really felt my grief. Just getting a bit too big to handle. think it was after Paola died, probably a lot of the talking about my death in public. And I could feel the grief getting a bit too big to handle. And it was kind of like a bit that I use in my therapeutic work, you the analogy of pressure cooker, we sometimes need to release the steam. I read a book called The Wild Edge of Sorrow by Frances Weller, which is one of the books that's changed my life. It was one of those books I got up on a Saturday morning and I didn't stop. I didn't get up again until off the sofa until I'd read it. It was absolutely transformative in a way about approaching grief and working with grief. And so I googled who does this work in the UK? It was France as well as in California. And I came across a woman called Nikki Harrison and she runs an organization called the Grief Space. And it said that she was running a retreat and something in me just went, I'm not even researching it. I'm just going to go put my name down. And I went. So 11 of us met in October in the most astonishingly beautiful retreat place in Cornwall with Nikki and her team. And we spent five days tending to our grief. I was the only one with a stage four diagnosis, but there were lots of people, I won't go into their details, but who had had losses of various kinds in different ways and in a way that they needed to spend time with. And we... told our stories and we had rituals and we had ceremonies and we went for walks and ah we did kind of breath work and movement work and we were fed really beautiful food and just cared for so much while we were there. I'd kind of hoped to feel relieved at having been able to just spend time with my grief, I think, without burdening people around me. I think that's what I'd gone for. It's like, just need to spend time and it's gonna be difficult for my family. So I'm gonna go and do it. What I hadn't anticipated was we had so much joy and there was so much care and so much compassion and so much love. And it was just what I was saying before, like the depth of the grief that we went to meant that the depth of the laughter that we found was just as real as that. And these 11 people we still meet on Zoom every so often. It really feels like the 11 participants and Nikki's team, like it was just this magical act of creativity that enlivened us all in a way that I don't think any of us had anticipated. And it came through allowing us to be with our grief in whatever way we wanted, but also to care for each other and care for each other's grief. So again, it's that thing of grief as love really, you know, we did was allow each other into our lives, into the most, Francis Weller calls it soul work. And he means that in terms of we really getting into the deepest, darkest parts of ourselves. And we, I guess, allowed each other into the deepest, darkest parts of ourselves. And that forms an incredible trust and an incredible bond, an incredible gratitude for the care that people took there, you know, and the respect that people took there. I sort of think that everybody should do it. And totally unexpected.

So when you talk about grief tending, is that essentially just sitting with your grief, tending to your grief, or is there another meaning to that?

It can take different forms. So yeah, there is something about sitting with grief, caring for grief, accepting grief and welcoming grief. So I guess the idea of tending comes from tenderness and attention and tenderness and all of those words. So it's not trying to get rid of it. It's not judging it. It's not feeling bad about it or feeling that you have failed or you've broken or you're doing something wrong, or you're bad in some way, it's really saying this is a part of my human experience and it hurts and it needs attention and it needs tenderness and it needs care.

I wanted to go back to the question of rage. What are you angry at?

How long have you got? I'm angry that, oh God, Laura, I'm angry that cancer exists. Angry that any of us have to go through this. I'm angry at the loss of my future. I'm angry that my kids are potentially going to have to, or that they've already had their life shaped by their dad's cancer and regular kind of illness through their lives and now that they're going to have to deal with their mum's and potentially the loss of their mum early. I'm both angry that it's happening to me and I'm accepting that these things happen. So in some way, I don't feel why me because I genuinely feel why not me. You know, these things happen to people and there's no reason why it shouldn't be me rather than anybody else. That doesn't stop me feeling absolute rage about it. And in fact, the first therapist I had after my diagnosis, she retired and I have another brilliant therapist now, but she... oh I turned up, it wasn't long after my diagnosis and I said, I just feel so angry, Claire. And I started talking and she said, well, do you want to talk about anger or do you want to be angry? And I said, what do you mean? And she pulled out this big pile of cushions and gave me a baseball bat and said, go on, be angry. And I just beat the hell out of this pile of cushions. And it was so cathartic. It was so empowering. And I felt so much lighter and so much more released. And there were a couple of sessions where I would be really fatigued, but still angry. And she'd say, do you want me to do it for you? And she would beat the pile of cushions.

Did that help in the same way?

My God. Watching someone beat... And she would shout, she would walk around the room and shout at paintings in her room and shout all the expletives that I wanted to say about cancer when I was just too tired to do it. And it was funny. It made me laugh. And it just felt so supportive.

I can see how that would be helpful because the first things that you said you were angry about were all things where there is no person to blame because we don't know what causes cancer. You can't shout at someone for your life ending sooner than you would like. You can't blame anyone for most of that stuff. And with something like cancer, I can imagine that anger where there is no person or corporation to blame is harder to deal with because you don't know how to get rid of that anger or how to fix the problem.

And I know that if I hadn't been angry in that way, the anger would have seeped out. You know, I would have been much snippier at home or I would have been much more touchy with people or I don't know, reserved or withdrawn or whatever it would have been, but it kind of allowed me. to have that real, and it wasn't just a mental expression, it was a physical expression of it. So total release and kind of left me able to be much nicer when I got home, much less just depressed, I think, worn down by it or shocked by it. It really helped me kind of be alive.

You're obviously very experienced in talking about feelings because of your work as a psychotherapist. But why do you think as a society we are not very good, in the UK at least, of talking about death and grief?

I think as a society, and I could get into a political thing about this, you it sort of doesn't support our system to be messy. So we like things to be neat and we like things to be orderly and we like things, we like to know when people are coming back to work and we like to know that people are going to be okay and we kind of like to keep things orderly and tidy. So I don't think that big feelings and really difficult experiences are very welcome a lot of the time because they kind of get in the way, they're disruptive and they're disruptors. In the way that we run our society, that doesn't really work. I think there is a way of making space for disruption in the world. And I think actually it can be quite energising and really creative. And so we lose a lot by not allowing those spaces. And I think, you know, maybe it's an English thing. I'm not even going to say a British thing because I know my Irish friends and my Welsh friends and my Scottish friends would be really cross with me. There's, you know, there is an old stiff upper lip aspect to things. So there are certain parts of English culture, I think, where it's shameful to express big emotions, you know, that you get points for and status for being able to contain yourself. And, but I know from my clients, you know, it gets in the way and it does come out sideways. What's there needs attention and it does come out sideways. And for me, that leads to anxiety, it leads to depression, it leads to hostile relationships or dysfunctional relationships. And it's much more useful if we can face reality and face what is honestly and carefully and expressively. And quite often it's a fire that then burns out. I think we fear that it's a fire that's going to keep going and keep going and keep going. I have clients over the years have often come and said, I can't start crying because I'll never stop. And I've kind of learned, you know, maybe 12 minutes or something. It's like it's very rare that people don't stop crying and it's very rare that people don't stop being angry. But it hangs around a lot longer if we're not allowed to do it. So I think we're really losing something by not allowing those big expressions of feeling and not providing space where we can say, you're welcome, you're welcome, rather than calm down.

Sounds so familiar.

Yeah.

How can we get better at talking about grief as a society?

Start doing it. Start doing it. Start having conversations. And I know that, ah you know, that's what I'm trying to do in carrying on this work that Nikki Harrison has been doing and other people here, that Francis Weller got from the indigenous cultures that he trained with. I think we need to be brave and I think we need to start in small groups because it is exposing. It does take courage to do it, but I think we need to practice carefully with people who can look after us and in safe spaces. And then we learn that we can survive it and we learn that it doesn't destroy things and we learn that it actually brings us closer and perhaps makes us feel safer in the end because we know what's going on with each other rather than everything being behind closed doors.

Are there any simple techniques you can share with us for coping with grief?

I think do all the things that we know are good for you. Like I was saying before, do the exercise even if you can only do it sitting in a chair, know, move a bit. Not only because it helps your body feel stronger. So there's something about moving I think is really important. There's something about tending to yourself in the food you eat, the company you keep, you know, don't be with people who are going to stress you out, who are going to be insensitive or leave you anxious, really take care of yourself. You know, be engaged or don't be engaged. Do what's right for you. Work out who your friends are, who can really support you and be with you in that place and are going to not leave you in isolation. There are lots of sort of tips and techniques like tapping and those kind of things that can be useful for people. And I would say, you know, go and get support. Obviously, a lot of cancer centres have psychological support and make sure you get that because they will help you find the techniques that are right for you because we all find slightly different things work for us. So hopefully they... counsellors that you'll meet there will be able to find things that are right for you. And I think really try to be real with it. I really think try to face it as much as you can, but I don't mean live in that place. Like that's the advantage of things like therapy or friends. It's like you've got a certain time in the week where you can really spend time there that can maybe free you up to do some other things. There's a great book that's just come out called It's Okay to Not Be Okay. She gives some fantastic advice for dealing with grief in the kind of initial, her partner died and that's why she wrote the book. But really great advice for the immediate aftermath. And what she really says is, let what happens happen. You know, do welcome it in. Don't try to fight things. I think when we try to fight or avoid or resist, it takes up so much energy and we get tireder and we get sicker. So try and get support to not be fighting.

And what are the things that help you with coping with grief and coping with your mental health effects of having secondary breast cancer?

Walking, walking, walking. My community, my breast cancer community of which you are a part. I know, you know, whether or not we're always in touch, it's kind of that feeling that people are there. I read a lot of all sorts of things that are about dying sometimes, about grief, about just things that, I guess, help me get perspective on things or let me know that I'm part of a much wider experience, that I'm not alone with it. I find that really helpful and things like poetry and music I find really helpful. And yeah, acceptance, facing it and working on that I think is the most important thing because it's that same thing. I know that if I'm, I can tell when I'm beginning to deny something or avoid something because I feel more brittle and my happiness feels more fragile and my wellness feels more fragile. So I kind of really pay attention to my body and my nervous system. Where am I feeling genuinely okay enough? Or am I feeling fragile and what needs attention when I am? But it is constant work. Some days I do it better than others and when I'm fatigued, it's really hard. Walks on the seafront, walks on the downs. That really helps me being outside. feeling like I've moved my body, even if I've just walked the dog around the block, if I'm really tired, is probably one of the things that helps me most.

It's amazing how much can be solved with movement and how we seem to go back to exercise on every single episode of this podcast at the moment.

I've also started dancing recently more often, going to gigs or I wouldn't say that I'm clubbing any longer, for sure, but you know, going, and that's just been great, you know, really, and going to the odd dance class with a friend of mine, which is a fairly kind of, you know, it's one of the, it's not quite ecstatic dance, but it's one of those kind of free and finding places again, just to move my body and let out feelings. And find the joy as well. Find the joy too, yeah, and just muck around.

We were talking before about every time you lose a friend from the secondary breast cancer community, especially when you're so much part of it. And that is incredibly difficult, especially if the person has become quite a close friend. But do you experience a thing that I experience, which is that every time someone I know, and I'm talking more about acquaintances, you know, these aren't necessarily my best friends, but they're people that I know through social media mainly who have been on a... who have experienced a similar thing with secondary breast cancer and they've died. And to me, that is like a marker. It's like a trigger. Every time that happens, I make a decision about something. It's like it pushes me to do something in my life because it reminds me that this is what this disease is. And sometimes because I'm well at the moment, I can get to a state where I'm being a bit complacent and I'm just living life normally, which is great and amazing. But then someone dies and I think that person was well a year ago. That could be me. And so I think, right, what am I going to do next? What decision am I going to make? Does it have that effect on you at all?

Yeah, do you know, I hadn't really thought about it, but thinking you describing it. Yeah, it does. I don't know whether they're always, they are sometimes big decisions like walking across the Brecon Beacons. I think that may well...

This is a trek that we did last year for Coppafeel.

I think that was possibly a decision made as Paola was getting sicker. And yeah, I'm not sure, they're not necessarily always big things. They might be small things, but there's definitely a, there's no time like the present. Just get on with it, feeling.

Yeah. Sometimes for me it might be that I'm feeling really, really tired, but I'm pushing through because I've got work to do and I've got deadlines to meet or whatever. And then a person dies, I hear about their death on social media and I think, oh my God, I am actually ill. I need to be kind to myself. And that just trigger me to be a bit kinder to myself and to think, this is really serious, what you've got. And so I think that even though those deaths make me feel incredibly sad for that person, their loss, for their family, for everything that they've lost, the future that they've lost. But I also think it's nice that I could take a tiny, tiny positive, which is that it can perhaps inspire and spur us on to do more with our own lives and, and then make that person know that you're continuing on there even if they can't continue to live their life, to go grab life like Nikki did, you can go grab life now and you can encourage everyone else around you to go grab life and sort of carry on that person's spirit.

One of the really extraordinary things that I've found in the secondary breast cancer community is that I've never met anybody who doesn't want us all to do that. As people have got iller or more disabled or less able to do things, the encouragement to yes, go and do that. And I know that that must be hard. You know, I know that there must be grief and envy and just deep, the deepest sorrow at what they can't do. But the generosity in people is absolutely astonishing. And the pleasure you know, support that uh for doing things like the Coppafeel trek that I had from people who weren't able to do it. But it's like, go and do it while you can. Please do it like really celebratory of each other. And it's just an incredible thing because I would completely understand if it was the other way round. You know, I would completely understand if people just couldn't bear it. But I've never met anybody who's done that. It's been really amazing, the kind of, yeah, as I say, the generosity of people to encourage each other to go and do things.

And just to segue off on that generosity point and on the Coppatrek that you did last year. So you decided to do this fundraising trek for Coppafeel, but you hadn't told a lot of people that you were living with secondary breast cancer. You told the people closest to you, but you hadn't told sort of... everyone on Facebook and you did this when you announced that you were fundraising. What happened?

Yeah, I did. So all the people kind of in my life now knew, but yeah, all those kind of Facebook friends and things, I'd never said anything. So I thought, well, if I'm going to raise money, I've got to raise money. And it felt like it, you know, it was a big target, £3,000 or £2,000 or something. So I thought I've just got to ask everybody I know. So I put something on Facebook. I didn't quite put it onto everybody because there were certain people around my work who I thought I still, it's not their business really, it's mine and I didn't want to know. But I kind of, so I selected a fairly big group and it was really extraordinary. And I have messages like from my first ever boyfriend and I got, I don't know, 50 quid from somebody I was at school with. And there was just this kind of outpouring of love, was just astonishing and just connection again with people that I hadn't spoken to for, I mean, 40 years or something. It was really, really amazing. Yeah, I was just incredibly overwhelmed and moved by that. Just really, just some funny conversations. It was just lovely to have somebody I'd worked with in London in, I don't know, 1994 or something, and we were just making each other laugh by text again. And it was really great to be in contact with those people again.

And I think maybe that goes full circle to what we were discussing at the beginning of this podcast in a way, because you shared your grief and you got back from it some joy and you experienced the fact that people do want to connect, people do want to talk. If you open up to people, they will often... open up to you and show that they care. And yeah, you're just an example, I think, of someone who's who puts their feelings out there and who wants to talk and feel the feelings and you experience what you get back from that, I think.

And they may have they told me some things that have been going on for them. You know, I found out things it wasn't kind of all, oh, we must attend to Helen. There was a lot of sharing in it. So, no, yeah, it was it was just great. I feel very moved and actually I've just messaged them all again because I'm doing another Coppafeel one-day trek in May. So I don't know how many of them have seen it, but hopefully we'll stay in touch with a few of them for that too.

Great.

I'd like to finish with the question we ask everyone on this podcast. Breast Cancer Now's vision is that by 2050, everyone diagnosed with breast cancer will not only live, but be supported to live well. What does it mean to you to live well?

I have got these three little stars tattooed on my wrist and it's come from a kind of lot of distilling of the different philosophies that inform my work. But what they are there to remind me is to be courageous, congruent and loving. And congruent kind of means authentic or genuine. It's slightly different, but in that ballpark. So yeah, to be courageous, congruent and loving. And I figure when I can do that, I feel like I'm living well. It doesn't matter where I am or who I'm with. If I'm finding those things in me, then it always feels like I'm living well. And if I've lost them, then I don't feel like I'm living well. But that takes support. You know, when I'm not resourced, it's much harder to be brave. It's much harder to be loving. It's much harder to be authentic. So, yeah, I would like everybody with cancer to be given the resources to live well with that kind of meaning, whatever the meaning is for them. And I think that involves psychological support, help with grief and fear and specifically, you know, how do we live with this thing, whether it's primary or secondary? I think grief and fear stays with you forever. I don't know primary patients who don't have it. And also, and I know this comes up a lot in the podcast, but physical support, there is so much evidence for how much moving and exercise helps a cancer diagnosis. So, and again, that's something that helps me stay well and strong and courageous. Yeah, mental and physical support for all cancer patients. That's my manifesto. And you make a really great point about primary breast cancer because yes, that's a huge grief thing. know, if you are... whether or not you have secondary breast cancer, I think just having one breast cancer diagnosis in your life takes so much away from you, know, whether it's hair, whether it's fertility, whether it's, you know, nothing tangible, it's just fear and, you know, there's so much grief associated with all cancers, I think.

It's that loss of innocence and freedom again, isn't it? Most people I know or I've worked with who have had primary breast cancer, they're always frightened it's going to come back. And that never leaves them. So they are living with fear in a way that they've lost that freedom to live without fear.

Totally, totally. And where can people find out more about you and your work?

So probably the best place is Instagram, which is at secondary.psych. It is a private account to ask and I'm trying to wean myself off as much Instagram at the moment so I might not respond that quickly but I will. And also I've started a blog on Substack which is called My Heart in My Two Hands. That's another thing I could have spoken about. And I had a bit of a block on it at the beginning of this year but I'll be writing again and there's a few posts on there now which is kind of just about what it feels like, to live with secondary breast cancer. And again, it's secondary.psych and my heart in my two hands on Substack.

And it's beautiful, raw, really, really generous writing that you're sharing there. So we will put that link in the show notes as well. Helen, thank you so much for joining us. This has been wonderful.

Thank you. Really enjoyed it.

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