Episode 70 - Mental health support

Coping with a brain tumour diagnosis brings huge challenges - from the shock of diagnosis to the anxiety of waiting for scan or test results, to relationships issues, physical changes and financial pressures. 

These can be especially overwhelming for teenagers and young adults who are already navigating their education and growing independence. That’s where people today's guest comes in. Dr Clare Jacobson is a Specialist Clinical Psychologist in a Teenage and Young Adult Cancer Service. Using imagery and analogies, she shares some practical tips that she uses, and that has learned from those in therapy, that we can all put into practice to support our mental health. 

You can follow Clare on Instagram here

And see some of her video tips on our website here. 

If you or someone you know needs a listening ear, you can contact our Support Team by calling 0808 800 0004, by using the web chat on our website or by emailing support@thebraintumourcharity.org

If you have any questions about this episode of the podcast, email podcast@thebraintumourcharity.org

Transcript

ANNA: Hello, welcome back to the Let's Talk about Brain Tumours podcast. I'm Anna and today Jo and I will be talking about something that impacts all of us, which is mental health. But it can bring particular challenges for people that are impacted by brain tumour diagnosis. 

JO: From coping with the initial shock of a diagnosis to the anxiety of waiting for scan or test results, adapting to physical changes caused by the condition and the financial impact of illness, there's a lot to deal with. 

ANNA: Yeah, it can be a really challenging thing at any age, but for teenagers and young adults, it can be extremely daunting because they're already dealing with so much hormones, pressures of studying, exams, societal pressures, just trying to figure out where they fit in. They may also have caring responsibilities if it's a loved one who's been diagnosed. So it can be a really confusing time and take up a lot of mental capacity. 

JO: That's why The Brain Tumour Charity is at the end of the phone to offer information and support, a listening ear, to signpost to other services. And we also offer free counselling sessions run by trained volunteers. We host private peer support groups on our social media channels. But what existing services are out there? And how do they help? 

ANNA: So for example, in some hospitals there can be psychological support on hand as well. That brings us nicely to introducing today's guest, Doctor Clare Jacobson from a Hospital in London. So hi, Clare, thank you so much for joining us today. Tell us about your background, your role, what it is that you do? 

CLARE: Thank you for having me. Well back in 2012 I set up the Teenage and Young Adult Cancer Psychology Service and we are there for anyone aged 16 up to their 25th birthday with a diagnosis of cancer or a brain tumour, not just malignant brain tumours, non-malignant too. So I set that service up. We see young people, we see family members, loved ones and around the same time I also set up with three others, the UK specialist network for psychologists working with, we call it TYA, teenagers and young adults, TYA patients with cancer or break tumour.  

And through that we've done a lot of work nationally in terms of guidelines, work streams, research and more recently I took to social media because I felt that I have, I must be the holder of close to 1000 people's very private, intimate stories. And while I can't share the details of those stories, there are so many common themes and the wisdom that is hard earned through therapy. I didn't want to be the keeper of those stories. So I've started to share tips, ideas and I guess providing a bit of context for people online. And that that has been really rewarding to do.  

And another part of my role really is campaigning. I do a lot of campaigning these days. Having worked in with these patient communities for many years, there was a real need for change in the UK and beyond. And as you will know, the service provision for people diagnosed with a non-malignant brain tumour is very different. There's far less available to those families and their needs are no less urgent, complex, lifelong, important. So that's really fuelled me on in a lot of the campaigning I've been doing. 

ANNA: Wow, what a journey. It’s so interesting to hear how we've gone from just the practical side to then reaching even more people with social media to the campaigning. So with all of those different elements, what does a typical week look like for you? 

CLARE: Good question. It's extremely varied. So seeing patients, of course, for therapy, that could be an individual patient, it could be a loved one. It could be running therapy groups, couples or family work. Research is a part of my role. I manage the service; I manage a team. We've got a new ward opening so that's just so exciting. There are so many opportunities with that to really embed psychology within the culture of that ward - offer groups for younger siblings, for dads who are often a really hard to reach group. 

I'm involved in a lot of national and international projects, so there's a lot to do in terms of UK strategy and guidance. So I contribute to a lot of that and I'm involved with charities. We're trying to innovate all the time and the best part of my job is our multidisciplinary clinic. It is fantastic. So we run this weekly and it comprises a number of different professionals. There's our TYA lead nurse, the dietitian, facility consultant, social worker, youth support worker and we hope to get a physio and an OT and psychology is a routine embedded part of that. So anyone aged 16 up to their 25th birthday, when they're diagnosed, they will be invited to our clinic and they will come at multiple points up to two years post end of treatment or their 25th birthday, whichever is later. So they stay in the service for a long time. They come up, they meet with everybody individually and then the team meet at the end to put together a holistic package of care. And it's just fantastic because I'm meeting people who had never opt in for therapy. We can troubleshoot, we can prepare for upcoming treatment. I can help hold some of their narratives with them and think about their preferred way of making sense of this. And I can work preventatively and what I liken it to when people walk in the room and think why am I seeing a psychologist? I explain that an Olympic athlete has a sports psychologist as a routine part of their training team. And if having a brain tumour is not some kind of Olympic marathon event, I don't know what is. So I tried to normalise it in that way and it's really helpful. 

ANNA: That's a really lovely phrase. 

JO: Yea that is such a useful analogy and so good that young people can kind of grow up with that support around them at such a crucial stage of their lives when they're dealing with such a big issue. We kind of imagined at the top of this recording, some of the issues that might come up in those sessions that that you lead. What would you say are the main things that a young person wants to, you know, without mentioning individual cases, what are the sort of most common themes that come up in your work? 

CLARE: It's just so variable. I mean, talking about if I go from the clinic, so these are the people who haven't necessarily opted in for therapy, but I will get to meet with them and often their loved ones too. And you know, I start from the from the mindset that the meanings are multiple and they change with time. You know, a brain tumour is not just a physical event or cognitive event. It is emotional, relational, spiritual, financial, political, even the meanings evolve with time and they're different for everyone.  

And I try to set people up for whoever is significant to them by talking about their love network. So it might not be their family, it might be just the people who are most significant in their world. And I give the image of the mobile above a baby's cot. And I explain that if you imagine the brain tumour is a tug on that mobile, all the pieces move into a different place. And that represents that everyone's often holding onto a different part of the distress and everyone usually has different coping strategies and they shift with time. And so we can expect clashes. So I like to set people up for expecting those relational ruptures with the people they love. Because, for example, you might have, in response to a brain tumour, take a typical a family of five. You may have someone who doesn't want to talk about it at all, someone else who's using humour, someone else who's really emotionally expressive, someone else who is Googling dietary and lifestyle changes. If you're the patient, you might find those suggestions about dietary changes a bit blaming and shaming, as if you somehow caused this by eating too much junk food. But a year on from treatment, you may be holding the exact same coping strategy. So I tried to explain that everyone's in a different position and that keeps that keeps changing. To try and see those ruptures as existing in the space between you and that person, rather than something fundamentally being wrong with your relationship. 

And the other side to that mobile image that I really tried to set up with people from the beginning is that although the brain tumour is encased within their body, it's happening to everyone. People often feel a real sense of guilt, responsibility, like, like they're a burden, they're the holder of the problem and they're causing threat and pain for the people they love. And by thinking about the mobile saying the brain tumour is the tug on that piece, it's tugged you, but it's happening to everyone. Say the brain tumour is the wind that makes the mobile move. It's happening to everyone. You don't have to feel a sense of ownership or responsibility for that. And you know, if you have the phrase, our family is facing a brain tumour versus I have a brain tumour, it's subtly different and it's not either or. I'm not asking people to abandon what they think and, and try to make themselves believe something different, but it does offer a bit of flexibility in your thinking. It gives you, you know, access to a slightly different way of positioning the tumour in relation to yourself. It's sort of externalised a little bit. 

ANNA: That's that makes sense. Yeah, it does. You mentioned a lot of kind of those complex emotions there, so kind of guilt and feeling like a burden. How do you, I guess my next question is kind of twofold. So first, how do you help and teach young people to learn to process those emotions? And then how if somebody is part of the love network of somebody who's been diagnosed, how can they best support that person? 

CLARE: We're going to have to break that into two parts. So processing emotions, I mean, we're all humans, right? We are going to all feel despair, heartache and traumatised in response to trauma. You can't short circuit it. But it is I think important to have a space to process those emotions because what people will often try to do is suppress them and that's different to numbing, which I'll come on to later. So if you imagine you are the sky and your emotions are the weather, the sky can hold the most powerful thunderstorm, the most frightening lightning strike. It can't break the sky. The sky always has room for the weather. And what we know is the weather always changes. And I think that's a useful image for emotions because our natural instinct when we are experiencing panic, anxiety, rage is to just get rid of it, just avoid it. 

And I try to explain this with the image of a beach ball. You know, if you're in a swimming pool and you have a beach ball and that's the distress that you're experiencing. If you push that down under the surface of the water, you are engaged in a tussle with suppressing that beach ball, right? You are completely engaged with it. It has power over you. You can't swim, you can't play, you can't enjoy other aspects of being in the water. You're consumed by it and when you do let go, it shoots back up and it's higher than it was before. So we know that suppressing long term doesn't really work and it uses up so much energy to do it. So I talk with people about trying to make space for emotions when they feel able to. I don't want to set people up to fail. You know, we're humans. We're not always going to be able to do this, but making space for it. 

I've got two different techniques that I find most people quite like. But before I get to those, I do want to say that emotions are, if you imagine a coin, you can't hold the heads without the tails, right? And so often when people maybe enter remission and they talk about anxiety, I give them the coin analogy because it's really important to recognise anxiety doesn't always mean that there's threats. It doesn't always mean your alarm system has detected danger. It could mean this matters. Oh, I'm happy because on one side of the coin, if head says love, increasing responsibility, connection, joy, on the other side, the tails is going to be threat, vulnerability, loss. If anything we love, we suddenly fear, you know, losing it. So I do, I think the coin is quite helpful for anxiety and letting people know that, you know, something matters here. 

And with anger, you know, all emotions are there for a reason. They’re there to protect us, give us data, they’re messengers, they’re natural responses. So kind of not pathologising them and explaining with the coin that it could mean something about the heads rather than something about the tails and can they make space for it, tolerate it so they can get to hold the whole coin. 

Two other techniques that I think are quite helpful. One is called the boat. So the boat analogy is that if you imagine these distressing emotions are like the waves and the wind, you can't control the waves and the wind or the ocean currents. What you can do is anchor. So if there's an emotion storm coming in, you can't predict it, you can't control it. You can accept it, let it be there, and choose how you're going to keep yourself steady in that storm. 

So anchoring could look like different things for different people like counting, breathing, tapping, seeking connection, holding someone's hand, whatever soothes you and helps you stay, stay able to tolerate that that storm. You can adjust your sails in response to the wind. So think about the wind is blowing this way. I wish it was blowing the other way, but I can adjust my sails, I can be flexible, I can work with this. So it's, it's a sort of tuning into people's agency and choice for their preferred way of navigating this and not being completely overpowered by what they can't necessarily control. It's when you're trying to control the emotions and get rid of them that that it really overpowers you.  

And the other parts of the boat is that you can choose your direction of travel. You know, even if you can't move towards north, you can face north and your direction of travel, your compass point, that is a symbol for your values. And this often takes work in therapy to get to because we don't really know our values. Often tuning into what really matters to you, like connection or kindness or respect or dignity. I worked with someone recently whose absolute north star was being a hopeful person. It was how they defined themselves and their life was ending and they were still able to connect to hope and do it in a way that aligned with who they are inside and what matters to them. They're not being hopeful, so it may sound impossible, but once you know your compass point, I think that can also help you just tolerate the waves of emotion. Let them be there, make space for them and do it on your terms. 

And the other technique is, I call it Gary often, but I ask people to choose their own name. We externalise it. I would never say to someone you are anxious or you have anxiety because that fuses the emotion with your identity. We would talk about in the therapy room, they may sculpt it out of play dough or colour it and it may just be a big BLOB of some spiky colours and textures, but often people choose to name it. So people come up with their own name. And if we go with Gary, I might start saying how do you know when Gary's on his way? How do you know when he's in the room with you? Are there times where he's tiny? Are there times where he's massive? How big is he in relation to you? What does his voice sound like? Does that remind you of anyone? Is there anyone who can tell when Gary's in the room with you? What would your partner want to say to Gary What does Gary say to you? What would you like to say back? What would you say if Gary said that to your friend? Are there any times you can change Gary's voice and make it almost a bit comical so you can kind of roll your eyes at Gary? And in the room we might have an empty chair and say, right, Gary's in that chair. You be Gary, I'll be you. Or what would you want to say to Gary? So we really act it out as a relationship. And that is helping people build a relationship to the distress and recognising Gary's going to live with you. You can't control Gary, but you can choose your responses to Gary. Not always, you know, we're human, but having a relationship with it, you can sculpt that in your preferred way and that can give you a bit more flexibility, choice, and ultimately a bit more freedom in relation to those emotions. So there's lots of different ways of of joining someone with how they want to process the emotion. But also, it depends, you know, if they're experiencing symptoms of trauma or work really differently than somebody on that. 

JO: With apologies to all the Gary's in the world who I'm sure are lovely, sorry, Gary. 

CLARE: Was it the name I came up with? But the right name, Yeah. 

ANNA: And what about, as we mentioned, kind of if you are in somebody's love network or a close friend, family member, colleague, what are ways that you can support somebody who's kind of trying to process all of the emotions of being diagnosed with a brain tumour? 

CLARE: Where do I start? I mean, so loved ones, are you talking about loved ones helping someone with their emotions or Because I don't know if you necessarily can, but there are certainly things I would love loved ones to bear in mind. 

ANNA: Yeah, I guess, I guess that then if I guess, yes, your support and kind of all the techniques that you've just spoken about is going to help them process their emotions more. So I guess what can other people around them be doing to support? 

CLARE: So I would say there's something about attuning to have someone's feeling. I mean, it's difficult because it depends on what role you take. And I do think it's, it's different if you're a parent or partner or child of that person. But if your friends say, you know, have a think about what you feel able to give actually, because I don't want to encourage anyone to step up into significant distress and position themselves as a supporting person when actually they don't feel able to or they're activated themselves. 

So do think about what you're able to offer but also recognise you're a really important part of that person's healing system. And the hospital, the healthcare team, they're just one part. And I think they're often there for the acute phase. And actually, after surgery, you know, there's a withdrawal from the healthcare team and people feel quite on their own and loved ones really become significant. The support they can offer. Yeah, I'd say check what you feel able to give and recognise that you don't necessarily have to know what your role looks like with that person. You can co-create it with them. It's new for them, it's new for you. Maybe thinking with that person about how you repair, because I often say to loved ones it's presence over perfection. You're not going to get the perfect words every time. Sometimes you're going to say something that one day that person may have been self-deprecating and wanting humour. The next day they may want a real cheerleader to make them feel like they've got the strength to do this. Another time they just might want you to sit in the despair with them and be really sincere. Sometimes they may not want words, they may just want a handhold. People talk about love languages, don't they? You know, acts of service or being weird or, you know, talking. So we're not asking anyone to be a chameleon and just be whatever that person needs in the moment, but recognising you those needs are going to change day-to-day and checking in, you know, what do you need today? Do you want us to keep you in the WhatsApp group so you can check in on all the gossip that's going on? Or do you, do you not want that? Do you want us to quieten that down? Asking someone so they feel empowered and they have agency and recognising we're going to have a rupture? I'm going to disappoint you. I'm not going to get it right all the time. How should we repair? You know, just communicating and asking the questions. 

JO: I think that's so important because we sometimes hear from people that they had a diagnosis, they were going through difficult times, and some of their friends really, really stepped up. And people that they didn't think what they were that close to suddenly became super supportive and did all the right things. And other people that they thought would be there for them just kind of disappeared because they found it difficult to know what the right thing to do or say is. And, and it is difficult to know what the right thing to do is. But as, as you've just said, I think to be there and say, you know, how can I support or look, here's tomorrow night's dinner, stick it in the freezer just to show some thought and, and to be there. I think that's so important rather than just not saying anything at all because you find it difficult to talk about what someone's going through. 

ANNA: Yeah, I mean, this is so common that friends drop away that our lead nurse actually prepares people for it at the start and says this is likely to happen. I don't know if that's if that's helpful or unhelpful for, for, for certain people, but, you know, he does think it's quite important to prepare people for that. And I've thought long and hard about what that is about. And I do think, you know, for some people, they need to protect themselves from, you know, they've got that they really can't be in that. And that's important that, you know, we do encourage people to put boundaries up and look after their own needs. I think for others, they're worried about saying the wrong thing and somehow making it worse. Some people just don't know how to sit with something they can't fix. And some people like you say, who weren't that close to the person who really step up. I think some people don't know their salience or their significance to the person you know. Am I intruding? Am I bothering you here? Am I giving you an admin task of having to reply to a text? Am I pitching this wrong? And people are fearful of making something worse, so they, they withdraw. And I really would encourage people to try to have a presence and just accept, you know what? I might get this wrong, but I'm going to have a go. I'm going to show them that they're in my mind, on my mind. And that could look like you say, you know, dropping around a lasagna or offering to drive your kids to school if you know you can't drive right now or asking questions like, you know, you're having seizures. Does that mean you can't you feel unsafe to boil the kettle and make a cup of tea? Do you want me to drop something in or just listen? Just listening. It's so powerful. And I think a good tip is often I've learned over the years what I do when some of my friends have really distressing things happen is I send a text and I say at the start, no need to reply. Just wanted you to know that I'm thinking of you or something. I noticed a picture. This made me think of you. No need to reply. So that if there's no pressure, but I they know that I'm there. 

I did write down a few top tips. Here's my big one. I talk a lot about the second wave, which is after the medical whirlwind has died down and the dust has settled. That's often when people kind of think you look, all right now you're moving on and the support withdrawals all round. But actually, if you imagine a soldier on the battlefield, they don't connect to the emotions of it all there. And then it's once they're home and they feel a bit like that part’s over, that's often when you need people more than ever. And with a brain tumour, so many of the effects are invisible. So much of that shows itself six months to two years after surgery or, or, or if you've got a brain tumour that's inoperable or, you know, it's scan to scan to scan, it shows itself a little while later and that's when you need people. So I know that something a lot of patients will say is when they get a compliment about you look so well, you look great, you look quotes back to normal. They feel so alienated and isolated because they feel at their worst actually, you know, their hair's regrown or they're able to walk again or their seizures are under control, but they feel so lost inside and the vulnerability and living with the fear of progression and recurrence. All those invisible, I call them the uninvited guests that that live inside you. And the one of the things I think is helpful is for loved ones or colleagues at work to say those great things that you want to say, like you look wonderful, you know, do say it. And also say, I don't know if that's how you feel inside, but on the outside you look wonderful. You know, just acknowledge the invisibility of what that person is likely living with. I think that's important.  

You know, there's intent and there's effect, that they can be different and simultaneously true. And, you know, you can grieve, that you can have the rage, you can feel abandoned and betrayed. It's really important to acknowledge and name and process some of those feelings. And it goes back to what I said at the start. 

A brain tumour has so many meanings. One of them is relational, you know, and that is something you process it like waves, you know, you don't know what's coming next. You don't know who's going to step up, who's going to fall away, how it's going to impact your significant relationships. 

JO: Amazing. And just stepping back a bit to what you said earlier as well, you've used a lot of imagery, which I think is really helpful. You talked about the sky, the coin, the boat, and on your social media channels, you also talk about people sort of owning their story. Can we unpick that a little bit? 

CLARE: Yes, yes. Actually, just before we do, I just need to say something else to loved ones that I don't want to forget. This is my key message to loved ones is often people feel as though they shouldn't be accessing support to loved ones. You know, they feel like I'm off stage here. I don't want to take the limelight; I don't want to use up resources. And it's so important that they get the support they need, whether that's through friends or, you know, I'm biased as a psychologist. But therapy because your mental health as a loved one is not a luxury. It's absolutely necessary. You are in this storm together. 

If we go back to the mobile, the brain tumour is the storm that is headed towards all of you or that you're all in. The patient may be facing the thunder, but you need waterproofs, you need wellies to be in that and alongside them with it. And the other really important thing to say here is that I've noticed over the years, readiness for therapy is very different for loved ones and patients. Because if you're the patient, often your strategy if you're about to have treatment for a lot of people is I cannot feel vulnerable. I have to feel my strongest, sturdiest, most robust self because I'm about to start a marathon. I'm about to start this massive treadmill of treatment. So they are focused. They don't necessarily, a lot of people don't want therapy. They don't want to connect to the emotional meaning of all this while they're having to run the race. But loved ones, often they're sat with the despair, the helplessness, the powerlessness, they haven't got something to focus on. There's nothing they can be doing. I mean, of course there is, but not in the same way. And So what we know about trauma and how it gets stuck in the body, that is often to do with agency, helplessness, powerlessness. 

And so loved ones’ readiness or emotional processing, connecting with therapy is often much sooner than the identified patient’s readiness. And that leads loved ones to think, well, they're coping and I'm not. Am I making this all about me? How can I be the the weak quotes, weak one when they need my strength? Absolutely not. It's a timing issue and it's, you know, it's really important. So please, if you're a loved one listening, this is part of your story every bit as much it really is. And it's important that you look after yourself in it. 

Sorry, back to the story, back to the story. What do I mean when I talk about owning your story, it's, it's just so enormous, isn't it? You know, it's just such a huge, huge life event that that changes so much for people. And I think after, after the medical whirlwind again, once you're into kind of the second wave that I've been calling it a spotlight shines on authenticity because you have not got the fuel tank to run around doing things that that don't matter to you. Now, if you imagine a map from a bird's eye view and you're in a, in a car driving around this map and that's how you did life before, you've got maybe 5% of that fuel tank left. You're not going to drive all around the places that aren't important. You're going to head straight to what matters most because you haven't got the energy, the, the capacity, the emotional bandwidth to do to do anything else. And actually, it may be the thing on that map that you thought was your priority actually isn't, you know, because it shines a light on everything, on tuning into your own needs, how you meet them thinking, wow, I was actually serving someone else's scripts or needs or stories. And that didn't actually bring me fulfilment. I was doing it to try and gain approval or belonging or acceptance or, you know, prove myself and actually that that's not what matters to me. And it ties in with the compass points from the boat. But I would say it's a time where people often have to shake off old like ways of relating to others.  

So for example, I hate that term people pleaser. But some people you know will identify with that. If you're tuning into your own needs, if you are living with uninvited, invisible guests like brain fog, tinnitus, fatigue, chronic pain, anxiety, the worry of seizures, nausea, whatever it is, if you're living with all of that, you've got to assert your needs. You've got to learn to say no to people, to things that aren't going to serve you. And you often have to find new ways to navigate your self-worth. So for example, if you were in that car driving around that map, giving people lifts everywhere, you're you to find your worth by being productive, being a service to others, being a doer, being busy. You need to find a different way of, of feeding that self-worth and that identity and your purpose, because you're not going to be able to do that now potentially or, or your capacity for that's limited. So that's what I mean about really looking into yourself and figuring out what you want, what matters, and trying to live in alignment with that. But that also involves looking at the scripts that influence us. And this is, it's the kind of work that makes people feel quite angry because you're looking at all the rules and values and expectations that actually were invented by someone else, you know, a society, but have somehow lived in your head as rules that you want to adhere to. And there's something called the wheel of privilege. And it's like a cake with lots of slices. And the closer you are to the centre, the more power and privilege you have. And there's things on there like thinness, you know, being slim is at the centre. You have more power in the UK society in 2026 if you are slimmer, if you are lots, lots of different things. But it influences how you story yourself and what's happening. 

And so once you can shine a light on those like invisible laser beams that were play inside your head, you have power to say, actually, I didn't invent that rule or that expectation. I didn't consent to live my life by that. I'm going to reject that. I'm going to reposition myself in relation to that. So an example of this is the narrative of strength being they're fighting a battle of the brain tumour and they won't give up. They are such a strong person and strength is defined in a particular way there. And if you internalise that and go along with that, how does that impact how you feel about rest, about crying, about staying in bed, about deciding not to have a surgery, about deciding to opt out of treatment or, or if you're palliative, you know, how does that strength script impact you? And I think often they're at play invisibly and we don't realise. So that's, I hope that kind of makes sense in terms of your story. t's quite, I'd say quite deep psychological work, but a lot of people really want to do that once they're about a year post end of treatment. 

ANNA: Yeah, it definitely makes sense. It's kind of rewriting what you've believed for so long and kind of having to look at that in a in a different way. How in your experience have you found, what's the best way to help a young person? Then I guess having to break the news that they've been diagnosed with a brain tumour to that busy network. It must be quite different to somebody who's at a different stage of life having to face that and kind of tell different people around them. 

CLARE: Yeah, absolutely. I mean, it's, I would say firstly, it's your private information. You don't have to tell anyone. It's, you know, it is your information. It's so difficult to answer because everyone is so different. But I would encourage people to take a beat. Take a minute first. I personally think that truth is power and secrecy breeds shame and all sorts of difficult internal states. But I also think it's important to think about your needs. 
What do I need? What do I want from people? And when you break the news, if you do, telling people what you would like from them right now is very helpful. And I don't want to give people an extra kind of admin cognitive task of right now. I have to tell people how they need to be. You know, it's not about control. It's not about designing the responses of others, but knowing your own needs is quite important in that. And what your hope is when you tell people, yeah, it's difficult. 

I mean, everyone's at such different stages and, you know, working with people who, who are single and dating and deciding when to say and how to frame that. And often people will sort of minimise the, the pain and the the challenge of it to make others feel more comfortable because they don't want to be the source of distress and they don't want to feel like they represent a threat and an overwhelming problem. And so, yeah, it's, it's multi layered and it's difficult and it's, it's different for everyone. 

JO: Yeah, I guess the fear is, you know, you start seeing someone, and then you worry that if you tell them, actually, I'm living with this condition, it might mean I have to go for regular checkups or, or I might have seizures or particular issues. You worry that they'll go, Oh gosh, this is too much for me to handle, and they'll leave, they'll dump you. You know, that's the fear behind trying to decide when is the right time to tell somebody. But it's also tough for that loved one to hear that, that you know, the person that that you are seeing or, or going out with or have a relationship with because it's an adjustment that they have to make as well. None of this is easy. 

CLARE: Yeah, there's the threat and the vulnerability penetrates every layer, doesn't it? Living with that is, is very, very difficult for how you build your build up your sense of identity. I would say generally from, from most of the people I see, I, I don't think there is that much. Well, it'll be different for everyone, but I, I, I don't encounter that kind of rejection based on someone's diagnosis that frequently it, it is quite rare that I hear about it anyway. 

ANNA/JO: That's good to hear about the human spirit, isn't it? Yeah, yeah, that really good to hear. And that that's our experience as well. You know, when I think of our young ambassadors and how they interact with each other and the relationships that they have, you know, all we see is support. And Anna, that was probably your experience as well when you were a a young ambassador. 

ANNA: Yeah, definitely think about a few years ago now. But yeah, everyone was just get so kind to each other and I think it really shines through. I think teenagers and young adults get a bad rap sometimes just in day-to-day life without being, I don't know, a bit self-absorbed, a bit selfish. You're all caught up in all these different life changes. But that group, I think of people with such a shared experience of brain tumour diagnosis, whether it's their own or loved ones, was all, were all so kind to each other and looked after each other so well. So yeah, it's definitely a very special thing to be a part of the young ambassador scheme. 

CLARE: I'd also say there's it's, it's such a narrative of pathology and problems and trauma. And I'm not dismissing or undermining any of the enormity, overwhelming enormity of that. Alongside that, there's significant, some people call it post traumatic growth. I'd call it skills development awakenings, A profound sense of wisdom about why you are here on the planet, what you want from life, the fragility of life and what matters about being in the now and navigating complex healthcare systems, communicating your needs really articulately preparing for the after effects of surgery. Like these are leadership courses and I'll teach the things that the skills that people develop when they go through this. You know, when you meet someone who is two years post a diagnosis or, or treatment, that is someone who you will get life wisdom and enlightenment from based on, on everything they have learned, not just about themselves, but about humanity and spirituality, whatever it is. You know, I talk about processing emotions. It doesn't just have to be through talking therapy. 

I'm really hopeful when we get our award that we get a music therapist because I think actually, you know, you can use it in lots of different ways. But I have this image of someone who is in that acute phase of, you know, the eye of the storm, of the trauma of everything they're going through. It's too much to put words to because it's so raw, so intense. It's kind of almost pre verbal and no words, you know, give it what it needs. You know, no words are good enough to sort of convey. And I have this idea of the music therapist going in with their trolley, closing the door and creating a piece of music with that person. They can pick off whatever instruments they want, composing it. They may have no musical background, but recording it and then maybe 10 years on, being in love with someone and playing them the piece of music saying I'm going to show you what I went through and it's music. There's no words. And however they receive it, it's your process, it's your story just encapsulated. It's the emotions of your story, not the facts, you know, it's your internal nervous systems witness statement of what happened. So it doesn't just have that. That's just sort of my fantasy about why we really need the music therapist. And I need to put that in more concrete terms for a business case or a charity to fund it. But you know, arts, thematic therapies, you know, there's, there's so many ways.  

And I talk often about weeds and roots. You know, the stress isn't there as a sort of weed to be picked out and gotten rid of. It's there to protect us, to help us release metabolise, process things. It's to protect us. It's giving us data. And I'll have people maybe in clinics say something like, I think I've got agoraphobia - the fear of leaving your home. And I'll say, OK, OK, that is a diagnosis in itself. Like as if a psychiatrist might say this person got agoraphobia, they need to have therapy that targets the, the, you know, the sort of exposure therapy or medication or something. I would say, do you know what that is? A weed that comes from a root. Agoraphobia is an attempted solution of something. If you feel scared when you leave the house because your whole relationship to safety feels like it's gone forever, now you feel like you'll never feel safe again. Threat is with you. And when you leave the home, it increases. A great solution is to never leave your home. It works, but it has a lot of costs. So let's try and find another solution and let's track it back together. Where's the root?  

And often, you know, if you think, how did you see yourself, the world and others before diagnosis as a little triangle, self, world, others, what adjectives would you use now? How do you see those things after diagnosis? 

What you're going to feel very differently and, and you know, is there a way of, of storing that in a, you know, slightly differently or building up your trust in yourself to cope with, with the threats? And I talk about the weeds and the roots in the context of The Secret Garden, because your internal world, when you're going through this, that's your secret garden. And you have to be careful who you let into it because you don't want someone who comes into your garden like your emotions and your thoughts and says no, no, you're thinking of that wrong. You feel worried. Well, don't. You're fine. You don't want someone who's going to come and dismiss things will say that precious flower over there is actually a weed. Let's cut it out.  

You know, you've got to invite someone in. As a psychologist, I wait. I am there to be invited in, and I am honoured with the privilege of being allowed in. Someone's in a private intimate space and I have to be very respectful and go at their pace and, you know, carefully don't crush anything, you know, ask questions and people will show me what they want when they're ready. And we can carefully co-create meaning and look at it in different ways together in a very sort of sensitive way. And I think often after a brain tumour, people are told things about themselves like, well, you're processing speed is, is low now, or you're, you know, some aspects of your cognition that's in the below average range now, whatever. And these words, they, they, they are in your garden, they're colouring everything. They are sort of contributing to this story of your personhood. That might not be how you define yourself. And I talk with people about illness and wellness. And actually I always would draw a line, illness one end, wellness the other, and we'd say, OK, where do you put yourself on this line? 

Last year, last week, today, an hour ago. And we realised that you always move up and down the line depending on what you're defining your illness and your wellness by. 

And a patient I'm working with a while ago, she came up with a brilliant adaptation of this. She said, no, it's not a line, Clare. It's an Abacus. So you're always going to be up and down on, you know, different rows. And I thought that was great because it's dynamic. It fluctuates. You know, it continues to evolve. 

JO: Amazing. I think everybody should listen to this podcast no matter what you're going through in life, even if you're, you know, everything is a OK and you know you're living the dream. You've given some really useful tools there for anyone to consider. And I think you've also picked up on two themes that we often see in the charity. One is that absolute change in perspective that a diagnosis affecting you or a loved one brings. Like you said, you immediately realise what's vitally important in life and, and what isn't. And the other thing that you mentioned was creativity, using music, art, poetry, song, photography, writing, all those different things to process and and express what you're going through, which I think is, super important. So yeah, thank you for all those, those analogies and, and tools really useful to have a think about. 

So, there'll be times generally, no matter how much support you've got, no matter how positive the outlook might be for an individual, that they just feel low depressed, you know, just don't want to get out of bed, don't want to do anything. How can people try to navigate that situation? 

CLARE: I think low mood is something that I think is a natural response after the medical whirlwind has sort of calmed down. And there are caveats to this, you know, please do monitor your loved one and monitor yourself. You know, suicide and depression, there are heavy links and it's really important that you seek help if you are concerned. And I don't want to pathologise low mood too much because it'd be really unusual to go through a brain tumour and be living with all the after-effects of that and not experience any low mood. 

Low mood sometimes creates that kind of stillness that we need. And going back to thinking about how we story ourselves and authenticity, often there's a sort of deconstructing of your Lego tower, but for life and all the pieces are on the floor. And before you rebuild that in a way that fits with now you do need a bit of stillness to take stock and recalibrate. And emotions wouldn't exist if there was no evolutionary function. So I do think low mood is sometimes there for a reason. It can also, I do wonder sometimes about if you think we comprise 35 trillion cells, your organs, you know, a cell inside your kidney doesn't know that it exists inside a body where there are other organs. You know that. But we are, everything is connected and there's often a lot going on inside, a lot of repair happening. And that often is why energy is low and low mood. It's not just your mood. Everything is lowered, your energy, your memory, lots of different things. So I do sometimes wonder if that's an indication that there's a lot of repair work going on inside and we need to conserve energy. 

And I do think sometimes there's a bit of a numbing that happens in order to cope with the intensity of everything, to get through treatment. You develop a strategy like your armour and that is numbing to just turn down the volume on it. And just because the bell has rung, you finished treatment or doctor says, you know, we're done, you can, you can move on with your life, doesn't mean you're going to automatically put that armour down. So if you are numbed emotionally, you're not going to come out of that until you're ready. And often when you start being ready to feel again, that can feel a bit worse to start with. So if you're a loved one watching someone with low mood, it's just heartbreaking because you just want to fix it. But actually, often it's joining someone where they're at that's the most powerful thing you can do, sitting inside that low mood with them. And I think something quite powerful to say as a loved one is you don't need to be anywhere other than where you are right now. It's OK. And sometimes if someone is numbed like that and it looks like they've lost all hope, maybe you just need to hold the hope for them because hope is heavy to hold. You know, hope is scary to hold. Maybe they need you to do that, keep it safe for them and then hand it back to them when they're ready. 

JO: That's so interesting. I really like the idea that low mood or depression is your body's way of telling you hang on, take stock. You need to wallow a little bit. You need to be still. You need to just listen and, and it you know, it won't last forever. This just needs to be that pause. So, so use it that, that sounds really helpful to me. And oh gosh, I could ask you so many more questions, but I wanted to end by asking you how you look after your own mental health when you are listening to all these other people's problems and, and traumas and trying to guide them. 

CLARE: Yeah, it's, I'm laughing because it's just such a funny one. And I would come back to the coin actually, because, you know, it's you ask anyone who has worked, any clinician who's been in cancer, worked with the cancer and brain tumour communities, have been part of the healthcare system for 20 years, like I have. And most people will have a decent chunk of health anxiety that comes and goes at various points. And I feel quite well prepared and positioned to, to manage it when it comes. But I'm a human being, you know, I can't protect myself from despair, heartache, pain. And I think part of what makes me good at my job is that I really do, I do feel that on sort of my nervous system really responds to that energy from someone. I think that's what creates such a powerful relationship in therapy that, you know, the relationship in therapy is that your vehicle to get where you want to go. And I think I'm often good at doing that with people and it's so enriching and rewarding, But it's two sides of a coin. You know, it's intense. So there will be periods where I I'm just so grateful and appreciative of life and my relationships and the now because I know how fragile it is. Tomorrow is never promised to anyone. And I think that puts me really in the moment, like, like this cup of coffee here, you know, I will really smell it and taste it, you know, the first few sips. And I linger over a hug with my kids and I think I really absorb a lot from life and at the same time, sometimes I feel really scared and I feel the anxiety that, you know, it would be unusual to value life and not feel scared about the threat of the loss or the inevitability of its loss. So I guess I feel enriched in lots of ways because I connect with the world in a way where I'm really present in it, and I don't take it for granted. And I often find myself in awe of beautiful leaves on a tree and, you know, the privilege of getting to witness that. But I also, I would say I also experience health anxiety, as do all of my colleagues. 

JO: Yeah, yeah, I totally get what you mean, that the role gives you that perspective. So you absolutely stop and smell the roses. But it sounds like you practise what you preach as well and allow yourself to feel those feelings and deal with them as only you can. 

CLARE: Absolutely. Yeah. 
 
JO: Amazing. Well, thank you so much for the job that you do, for supporting our young people and, and young adults and for doing all that studying to give you the skills to, to do what you do now. And oh goodness, I really want to share this recording far and wide so that people pick up on some of the, the imagery and the, the analogies that you've used to, to help us all deal with whatever we're going through. 

CLARE: Thank you, Jo, and thank you for giving me the opportunity to speak today. And when you say thank you for the work I do, I, I really, I want to thank every young person and family member who has trusted me and taken a chance on, on, you know, letting me into that private garden basically, because it is a team effort, you know, And I think what patients will often remember that things said and done in therapy years later. But what doesn't get talked about often is that we as psychologists, we, we take so much from that work too. And I still remember people from 20 years ago and, you know, things that were said and the wisdom that comes from people's lived experiences. And, you know, I'm very appreciative to have my job because for me it's the best job in the world. 

ANNA: Thank you so much, Clare. It's been so fascinating listening to you today. Honestly, I feel like we could have listened to you for even more time. But what we'll do is we'll put a link to the web page about your work in the show notes so that anybody listening can get all the information that they need. But thank you so much for taking the time to speak to us today. And please keep doing such amazing work. It's absolutely brilliant. And I hope you get your music room as well. 

CLARE: I hope so too. Thank you for having me.