Learning to heal – incurable cancer

Gillian Straine

I am Gillian Straine and welcome to the Go Health podcast. In this season we are exploring the theme of learning to heal. We all learn in all sorts of different ways every day nut in the GoHealth podcast, we are learning to heal by listening to the stories and experiences of others. And in doing so, we might be learning to heal ourselves, our learning to be a source of healing for others, our both. 

In GoHealth we take up the call of Jesus to help others to find healing. And we know that we all need healing all the time so this podcast is, we hope, hitting that nail on the head in both ways. If you haven’t done so already, please rate and subscribe to this podcast. This helps others to find it.

In this episode of the GoHealth podcast I’m chatting with Claire Foster-Gilbert. At the age of 54 Clare was diagnosed with myeloma, an incurable cancer of the blood. The prognosis ranged from surviving only a few months to living for several decades, with no guarantee of which outcome was to be hers.

Claire, director of Westminster Abbey Institute and a national expert on the ethics of medical research on humans, was to find herself experiencing new treatments firsthand. Her new book, Miles to Go Before I Sleep, is formed of letters she wrote to her dear readers, friends who she asked to accompany her on the journey.

This book is an exquisite account of the power of the human spirit in the face of mortality, an unexpectedly exuberant account of how, through her terminal diagnosis, Claire has learned to live fully with joy and defiance. It’s an exploration of how faith is no simple solace but provides a whole new clean of meaning during these liminal moments. 

Claire Gilbert’s story is deep, powerful and challenging, a truly sacramental story about a devastating diagnosis. But it’s not a book about dying – its truly a book about how to live.

[MUSICAL INTERLUDE]

Gillian: So, Claire, thank you so much for joining me today on the GoHealth podcast. And this is not that we have met before, right? So I think, I was trying to think back to the first time I met you was in London when we’re doing some work on the environment.

Claire: Yeah.

Gillian: And could you tell us a bit about your day job now or what your day job is and how did you get doing that?

Claire: Now I run Westminster Abbey Institute and I’m the founding director of it. It was founded in autumn 2013 to work with the public servants and public service institutions that sit in close proximity to Westminster Abbey on Parliament Square, with the Houses of Parliament to the east, the Treasury and all of Whitehall to the North. The Supreme Court since 2009 to the West and the Abbey on the fourth side. So the institute is the answer to the question ‘what’s Westminster Abbey doing to support public service, people of goodwill in public service, public service values?’ And we have lectures and dialogues, public ones and then we have invitation only seminars, for government departments and others. And we have a fellows program of younger public servants from all different walks of public life, whom we work with for a year. And it’s all geared towards nurturing and revitalising moral and spiritual values in public life and and for people of all faiths and no faith as well.

Gillian: Well, that sounds like a whole separate podcast I now what to do about that particular life? Really pleased to welcome you on this podcast to chat about your, your experience. You’ve published a book recently called Miles to Go Before I Sleep, which is the journey, the beginning of your journey through getting diagnosed with cancer. And on this podcast, we we invite loads of interesting people on to tell us a bit about what they’ve gone through, because we believe strongly that in our stories…that when we tell our stories and we listen to stories that we could find healing. And so can you tell us when you were diagnosed what what’s your diagnosis and what you’ve been through and where you are now today sitting here talking to me?

Claire: So it was somewhat, somewhat by accident because it was really looking for something else and only in order to sort out an insurance policy. A myeloma was found in my blood or the protein for myeloma was found in my blood. A myeloma is is a blood cancer which is horrible. I mean, it once it gets going, it starts eating your bones. And often people aren’t diagnosed because it’s not thought to be to be looked for as it were until the, the Cancerous proteins have started to eat…They have what they think is a heart attack or a broken rib, or there’s some sort of pain in this area. And what’s happened is that the myeloma has started eating away at the bone. As one fellow sufferer said to me, ‘my bones were like lace’, so that’s what it does.

But luckily, mine was found because of the wonderful, wonderful kidney doctor at Guys who looked for it, who was looking at my kidneys -there was a slight anomaly and that was the test for the insurance company. But he looked for the myeloma cells and found them. I had a phone call from him in, I was in the pub in Hastings. We’d just come down from, from London for the weekend, having a pint and I had the phone call completely unexpectedly. And he said, I have found this protein and it could be myeloma, and I didn’t know what myeloma was. So he said, well it’s a cancer. 

So I had this initial shock of the possibility of the diagnosis and then that awful period that everybody who’s had cancer knows and perhaps more so than ever in the last year, of tests and not knowing, and waiting for the diagnosis and trying to prepare myself for the for the worst.

And indeed, on the 8th of March 2019, the confirmation was given to me – as I did have myeloma. It hadn’t done any damage, so I was feeling completely healthy, but there was enough of it to justify the treatment. And with myeloma, it’s incurable, so what they try and do is send it into remission for as long as possible, and they do that by hitting you with as hard treatment as you’re really able to take in that initial period in order to do that and that treatment Gillian, I’m still undergoing, so two and a half years later, I finish in mid-July.

I cannot wait to finish.

But there’s an initial…And it was given in the context of a clinical trial, so initial batch of chemotherapy, then randomised to having a stem cell transplant or having more chemotherapy. I was randomised to the stem cell transplant, which is horrific and then 18 months of maintenance chemotherapy, which is still, I mean, every, every time I have it, I have it once a week and then every four weeks have a week off. Every time I have it for 24 hours, I feel absolutely grim, although I may the rest of the time, I don’t feel too bad and I’m able to hold down that job I just described.

Gillian: Were you hospitalised after the stem cell bit, how did that bit work?

Claire: Yes, I was. So this is I mean, this is, I mean it’s extraordinary therapy, but what they do is they harvest your own stem cells, which is a whole process in itself. And then… and then you a few weeks later, you go to…at University College Hospital, you go to what’s called the Cotton Rooms, which is a sort of hotel for people with cancer. And it’s a lot cheaper…because you’re walking well as it were. Well, so you stay in this hotel room and you walk to the cancer centre around the corner until the point when you become so ill, you can’t do that anymore, and then you’re put in an isolation room in UCLH. 

And so what happens is you’re given this enormous dose of a horrific Chemotherapy called Melphalan, which is based on mustard gas used in the second World War which kills off all your stem cells in your bone, kills off your bone marrow. It also kills off all the bacteria in your gut, so from your mouth to your bottom is out of action, well it is horribly in action because you’re vomiting and having diarrhoea all the time. But you because of the bone marrow dying, you become what’s called completely neutropenic, which is to say you’re absolutely immune compromised and even the bacteria in your own body become poisonous to you.

And when your temperature goes up to 38 into isolation, you go and that’s where I was for for a…for actually three weeks because I came through all right, a couple of days after the Melphalan they give you your own stem cells back. And there’s a sort of I think if as a Good Friday, Easter Saturday, Resurrection Sunday, but it’s delayed. So about a week after you’ve had the Melphalan and and the and the stem cells back, you start to feel completely terrible. That’s when I went into the isolation room. And you feel completely terrible for a long time or feels like forever. That’s the extended Easter Saturday. And then at some point your stem cells start to work. They they catch on… and then you slowly, slowly claw your way.

Actually, the image that I had of was the harrowing of hell.

Claw your way out of hell back into being…to being healthy again, having your, having your cells working again so you are not immune compromised anymore. And that takes well it can take six months. It took me three months to get back to being as well as I was before I went in.

I mean one of the things about this whole process that’s been really counter intuitive and strange is that at no point have I felt ill from my cancer. I have only felt ill, and I have felt horribly ill from the treatment. Again, quite common for people with cancers is that that’s what makes you feel. You go, you think normally…I’m ill, I feel ill, you go and have medicine. And the medicine makes you feel better. Well, and this is the opposite.

Gillian: And almost it’s an act of faith, isn’t it, in this.. in this stuff you’re doing to your body because…often they use the warm metaphor, you know, she’s fighting her battle, he lost it, and it’s a rubbish metaphor. But in some ways, these very crude tools they use on the… you know, the…the chemotherapy, the chemical warfare, the operation is the kind of the scalpel, the you know, so they’re…they’re very crude weapons in a way. So in some ways, some people think that, you know, in that in that regard, the war metaphors are quite illustrative of cancer, but you shake your head when I mention the war metaphors is this something you’ve obviously discarded.

Claire: I have. I have Gillian because, well, apart from anything else if I’m going to use the war metaphor – I know I’m going to lose the war. So why would I use the war metaphor? Because it’s an incurable cancer and it will come back. I mean the best possible outcome is that I live long enough without it coming back to die of something else.

And you know, this is my, this is my mortality that’s been presented to me with this cancer. It’s not a battle I’m going to win. This one doesn’t win. I mean, this is the lesson to me, one doesn’t win the battle against mortality. So honestly, live with it, accept it, turn it into a source of joy in a source of bitterness. 

If I keep the war metaphor in my mind I’m going to get bitter and I was not going to…I was going to do everything I could to not let that happen, not let the cancer  be a source of bitterness.

I should just say you’re absolutely right about the faith point – that all I was…just shown numbers. I could feel nothing. I was shown numbers. And on the basis of those numbers, I’ve been given this horrible, horrible treatment. That’s absolutely based on my trust in the doctors. Of course, they give full information. But you know, when you’ve just had a diagnosis, you’re reeling, you don’t you don’t really understand.

Working on medical ethics, which I did for for many years, particularly the ethics of medical research on humans. We talked about consent – it’s absolutely essential. Every patient should consent and consent is made up of three parts:

It’s given by a competent person, it’s based on adequate information, and it’s not coerced.

Well, I can tell you I was none of those things. I wasn’t competent, I was reeling. I couldn’t take in the information, so I wasn’t adequately informed. And I certainly was coerced, not by anybody, but by the situation. So that although I would never for a minute say don’t get consent from patients, it’s just because you need to have the right to say no. But you’re but what you’re saying yes to, you’re saying yes, because you trust your doctor and your nurses.

Gillian: So it’s about that relationship between yourself and the medical staff – it’s a nice way to get a diagnosis. I immediately forgot everything I’d been told. You know, I just couldn’t keep any information because you’re in shock in a way.

So let’s just stick with the kind of that diagnosis, and of course you described it so eloquently, it’s not just a moment, it’s then we think it’s a…but you’ve got to wait and then, you know, it’s a bit of a journey you’re going on there.

But being diagnosed with blood cancer…so, so it’s and I similarly had the blood cancer too that am…bulky cancers you know, breast cancer or a sarcoma or something like that, you can kind of point to it, can’t you, and say it’s here and there’s a danger there of becoming very dualistic, you know this bit of my body’s bad, and it needs to go in order for the rest of the good bits of my body to carry on living. And that’s not possible, is it? Because your cancer was in the blood, in the very thing that’s moving oxygen – I don’t know that much about it, Claire, but moving oxygen around – you need your blood. You can’t get rid of it. So you didn’t have the option of being dualistic, I guess, about this one.

Claire: And I again, because it’s such a vital thing – the blood flowing around the body bringing life as well as now for me, death.  I have and I still do this, it’s a conscious meditation of flowing into my blood – it’s sort of Ignatian and imaginative, imagining my way into my blood and flowing around my body and sort of loving it and saying, look, you’re fine, you’re fine, you’re wonderful, you’re doing a wonderful job. You don’t need to make extra proteins. And also thinking of Christ flowing through my blood. I mean, there’s…I have to drink a lot of water with this. I have to drink six pints of water a day, which is really good, actually, I’ve been getting so hydrated. But this eucharistic thing of blood and water has been terribly important in the flow of it and really consciously bringing Christ into that movement of blood as a as a as a loving thing, as a tender thing, as a porous receptive thing and letting the cancer, the cancer is part of that. So letting it be loved as well. Rather than yes, I mean, if I had a tumour, I suppose you would, you would, you would hate that thing. You would want it to go. But I can’t do that.

Gillian: And it sounds like because of that you’ve connect deeply with your body, it sounds like this has been related to a deepening…has there been a deepening of faith or a rediscovery or an uncovering or just, well, there’s nothing else. I mean, how…tell us about how, you know, particularly in the initial diagnosis when you were reeling, what your faith meant to you at this time?

Claire: It’s…I always find it really, really hard to talk about my faith because I don’t really understand it. I have always found God undeniable. It’s not, I’ve not really, I don’t really have a sentence, I believe in God, although I say it in the creed and I don’t not believe in God, but it’s such an undeniable – God is such an undeniable presence that right from the start of this whole process, there was there was no absence of God.

But the other thing I think I would say is that I’m a bit of a spiritual extremist, which is why  I love Julian of Norwich so much because I think she is too. And I was so…I felt right from the start that I needed to make this a God filled experience, to make it transformative, to deepen everything in me spiritually. And right from the start it was it was not going to be separate from what was happening in my body. And I made a list of of the things I was going to do before I died. I was given it on, on average, ten years to live was the…was the answer to the question ‘How long have I got a doctor?’ On average, people like you in your sort of state of health and stage of the disease it’s about…on average, ten years. Of course that could be two years or 50 years, but anyway anyway.

So let’s imagine I have ten years to live and and a lot of things on that list were to stay beautiful, to really take care of my body, to wear beautiful clothes, to ride horses, to swim in the sea…But then there was also to write, which has always been my greatest solace and my way of making sense of things and to contemplate. To practice contemplation and let that contemplation be deeper and deeper. And I might say, as I’m trudging through this, what feels like endless maintenance treatment. The feeling that I mean it feels like it’s almost worse now because there’s nothing dramatic about it. It’s just horrible every single week for 24 hours. I know tomorrow I’ve got my treatment and tomorrow evening I’m going to feel like absolute rubbish and that I somehow…to contemplation. This is almost the more testing time, contemplation has to go deeper. So I’m the sort of spiritual extremism of the stem cell transplant when everything in me died, you know, and I was feeling so, so, so Ill…I thought, I’m going to die and be reborn. And this is really what Julian asks for. So I’m going to let this thing that’s happening to my body be something that I’m going to be transplanted in my spiritual marrow I wrote and thought. But now it’s just deepened the contemplation. Deepen it, deepen it, keep loving your body. I keep telling my body how much I love it, and how brilliant it’s been, it’s been receiving…this is going to make me cry. It’s been receiving this poison for two and a half years and look at it. It’s still going strong and being amazing. 

Gillian: Yeah. I’m really fascinated by that. You just said this is the harder bit, every week kind of got to drag yourself back to hospital. Knowing it’s the right thing – rationally knowing but your body saying, ah, do you have to do it? Compared to the kind of drama of the stem cell treatments when it happened which sounded really really tough. And I mean, I love…you just you’ve got a Ph.D. in Julian of Norwich. Is that right?  So here we go with my a school level but I studied ‘Revelation of Divine Love’ at Oxford with Sr. Benedicta Ward, so it was very scholastic, very reading commentaries and ah – trying to get it right. And I remember I had this experience of reading the revelations of divine love not really know much about it. And in the revelations, Julian’s praying for an experience of the cross, you know, hoping you’re going to nod and that I’m getting this right. Experience of the cross so she can fall deeper in into an understanding of what it all means. And that chapter towards the end of the book, where you know you’re at the point where she’s hoping to see an experience Christ dying, and it’s very bloody and gory and she’s there, she’s waiting to find out what it means and suddenly Christ turns to her says, ‘Is this enough?’ I remember being so struck by that, that I was brought to tears going, Oh God, is this what it’s about?

You know, it’s not just about Jesus dying for our sins to make everything all right again. You know, he’s on there experiencing the suffering for us and still asking, is it enough? Is it enough? Because it’s such an extraordinary text about suffering and yet is written in isolation. And I wonder, to what extent, I’m curious, you said of being isolated by your cancer and whether that’s been something that’s been part of the spiritual journey?

Claire: Yes. Well, so in general terms, I think I think the danger, the difficulty with cancer, with telling people you have cancer is that you can become the spectre at the feast. You are the reminder of people’s mortality and that’s, that can be quite hard to hear. And I and I and I forget that actually, because I am completely open about my cancer, I tell everybody I’ve got it, and perhaps I just want their pity, I don’t know…But actually, I will say most people have responded magnificently, even if there’s been an initial shock. They’ve they’ve sort of rallied and said some dreadful things, but then I’ve said dreadful things to people who’ve got cancer. I think one, one, one realises in retrospect. But also some wonderful things and just been there for me. But yes, so the spectre at the feast and that and that and that can feel isolating in general. But then of course, there was the specifically in the isolation room at UCLH because of the stem cell transplant when everything was poisonous. That’s a strange feeling – the world, the environment, my thesis on Julian was about porosity and the way we can address environmental concerns by an attitude of being absolutely porous to nature around us and this, I say, is what I still think is what we need in order to transform the way we live with nature.

But here I was being absolutely protected, and everyone who came to see me was masked and gowned and all presaging COVID, of course. And yes, and as I say, even because even bacteria in my own body were becoming poisonous to me. So this sort of feeling of moving. But even then Gillian I still tried to mean practice this porosity and openness and…and even the very interior place of my bone marrow, the heart of my bones, where the, there the cells were transplanting to to receive them, to be porous to them, to let them work, let them grow. And anybody who did come into my room was extremely welcome. There was one nurse who was a bit frightening, but the rest of them were just completely wonderful. And my beloved partner, Sean, who is the real hero of the story was there every day of course with the Evening Standard to keep me sane.

Gillian: So what helps you mentioned and people said, terrible things. People said good things. What what’s what’s a good thing to say? What’s a good way to be? If you could design your ultimate person.

Claire: So the difficult thing about that is of course, of course, sometimes absolutely anything anybody says is wrong. And sometimes it doesn’t matter what they say, it’s right. So so what-  I don’t have an answer to that question. What’s the right thing to say? But what I will say for the person who has cancer is really, really try and remember that people are speaking out of love. And hear the love not the words. And Sean taught me that really. And that’s what I’ve tried to practice. But the other thing I would say to the people who accompany the ones who are so unwell, I think it’s the hardest place to be when somebody you are… you love is in pain and you can’t do anything about the pain. The most important thing is don’t go away. Don’t turn your back on it. Try not to be afraid of it. Try and sit with it and love the person. And and and. Again, it’s a of kind of porous feeling of presence and attention, not in that awful pastoral lust kind of way, but just at ease present, at ease. This is something I have to learn to live with so if you can sit with me and be at ease with this thing that I have to learn to be at ease with, this will help me immeasurably. I remember coming back to Hastings, it was our first…we got back the first time after the stem cell transplant when I…because I’d recuperated in London and the journey had been very difficult actually. And the train journey and lots of problems. And I  got into the house and I lost it and I was making these noises [Gasping noises] I couldn’t breathe and I was weeping and I could hardly stand up and I just kind of fell apart. And Sean just stood with me, put his hand on my back, and he just stood with me. He wasn’t frightened by what was happening he just stood with me. And it was immeasurably comforting. As the tide of tears and breathlessness and whatever panic passed and I was back to some kind of equilibrium. Be present, be porous, be loving, be at ease as much as you can. And it’s not easy because it’s frightening. These things are frightening.

Gillian: And people want to make it better don’t they? They want to say something either to make it better or to say…my experience was that they wanted to say something because they want to help or something to indicate they don’t want to hear about it.

I used to get ‘you look really well’ before I’d said anything and I did not look well. What occurred was, ‘I don’t want to hear how you are. I’m pushing away.’ And I think often churches with the healing ministry, people you know, your your advice about just being present is so powerful because we often just want to skip to, can I pray for you? And I wonder how you react in church, you know, when people say, ‘can I pray for you?’ when you have this sort of holistic vision of the presence of God and everything and and porous nature of being, you know, intertwined with nature and your body and you, you know, this really well worked…I can’t wait for the theology book on this by the way…theology of what you’re going through. And then somebody says, Can I pray? Can I put you on the prayer list? What do you think about that? 

Claire: Yeah, oh, look, I’m just really, really, really grateful, Gillian. I mean come on we need it. There was really there was one beautiful moment that I think I think I just need to say something about the dear readers. So because this has been the absolute saviour to me over this period and this is where the book came from. Right at the beginning, I asked a group of people if they would let me write to them, and the only the deal was they had to read, they didn’t have to respond. And I definitely didn’t want any advice, but actually they have responded and it’s been completely magnificent. And so each week, I’m still doing it, for two and a half years, I’ve written a diary of what’s going on and it’s unexpurgated. It wasn’t written for publication originally, so I didn’t, I didn’t, I didn’t try and make it nice. I was writing to people who loved me and I am writing to people who love me and understand me and have given me permission to say the worst possible things, as well as the best possible things. And that that gift of presence of reading has been extraordinarily powerful. But there was one point about a year in maybe six months when when one of the readers wrote to me, she’s a priest, she wrote to me and she said, can I say this, Claire? Let us do the praying. You just sleep.

And that was really amazing to read, prayer is like my faith is something I didn’t really understand or find it quite hard to talk about. And, you know bringing my name into the presence of God or…how can that not help? And it’s certainly this feeling of being the pillow on which I slept was the pillow of their prayer. It was wonderful. So no…I’m, I’m very happy to be on anyone’s prayer list and I’m very moved whenever anyone says that my name is there.

Gillian: I was really struck in your in your decision to write and in the way you described the importance of writing. But writing and having it read. It sounds like you said it wasn’t just writing and putting it in a drawer somewhere. It was writing it and knowing people that loved you were reading it. So it seems like you’re saying that this was something that helps you come to terms with what you’re going through, help you process it and helped you find some…would you say, some sense of healing of what you’re going through that you were able to…that your story was out there?

Claire: Yes, it’s the reciprocity of the, of the activity. And because I had the readers that made me write because I didn’t always want to write. But an actual act of writing for me  is healing, it has a healing effect. As my fingers, I keep my fingernails very short because the pads of my fingers on the on the keyboard. I think it’s a bit like for…for a pianist, this is, this is a very creative thing. This I’m just showing Gillian my fingers like this as if I’m playing… typing on the keyboard and even…if I don’t think I have anything to say, but I just keep typing it even and I don’t know what to say and then something starts to happen and something starts to move creatively, and then the words emerge and the words as they emerge tell me what’s going on? And I do try to make them beautiful, truthful and funny as well. 

One great encounter early on with was a great friend, who, whom I asked if he would become a dear reader. He said to me, Oh, yes, I’ll I’ll do that, you can even write to me. I mean, I’ve made it clear this is a great help to me, if he could, if he would do this. And he said that a friend of his had gone into prison and asked if he could write to them, to Jonathan and his wife and and said yes, of course. And he said but the thing is, after a couple of weeks, it got really, really boring. And so I still have this, ‘I must not bore Jonathan through writing. And that’s a great boost – you know, it makes me really try hard with writing to make it compelling and the compelling nature of it is in the present truthfulness of it. I realise as I look back at it now.

Gillian: And something about the human relationship, let’s make it interesting because you’re writing to somebody, and I think often with cancer, you know, it’s terribly serious and you can’t ever say anything. And I remember…I much younger than you when I when I was ill but, you know, nobody wanted to hear it because it made people uncomfortable. But I kept thinking come on…the funny things happened on the chemo ward, and I’m meeting with really extraordinary people and it’s a it’s my human experience as well and something about communicating that’s important.

Claire: It’s vital. It’s vital, humour is vital. I can’t tell you how important it is, and I have felt that of all the people serving us over this last year, the comedians have been among the greatest because they have kept us laughing, laughter is such a tonic. And there are some jokes in the in the dear readers letters and people would send me jokes too. So important. And yes, I mean, the experiences of the not working systems in the NHS and the dear funny people, as you say that you’re surrounded by in the chemotherapy suite and there is so much humour there and it’s really important. Really healing.

Gillian:  We sort of prearranged for you to read a bit of the book, and it’s a bit about where you got your hair shaved and you had an interaction with a hairdresser. And it really struck me this bit because when I was ill, the most important person in, I would say I was healed by a loads of drugs and therapies, quite a lot of psychotherapy afterwards. You know, it’s a lot of people involved in my healing, including God. But the person I was, that I think of particularly was my chemotherapy nurse, Geoff. Actually, I bumped into Geoff last week randomly in the streets in Aberdeen. So yeah, I feel like I feel a bit emotional because he’s still a part of my life in a way. And this was 20 years ago, but he was a gay, secular Jew. We don’t have that much in common, really on paper, but you know what, he sat with me through every single chemotherapy for hours and hours and hours because my one had to go in really slowly by hand. And you know, and for me thenI went back to meet him seven years later after I was in remission. And that was the pinnacle of my healing experience because I went back to meet the person who was present to me. And I wondered if you would mind reading that bit from your book about losing your hair and the presence of a hairdresser, because I think it’s so extraordinary and gets into the nuance of what it’s all about.

Claire:  Yes, yes, I love this bit. In a way, it’s a epitomises the whole thing, because it’s a, it’s the worst thing and it became the best thing. But let me read it and there’s a bit before just about my feeling about losing hair because that that sets it up. 

So this is Monday, the seventh of October. Hanks of hair coming out in my hands, in the bath and at the sink. More is on my head than is coming off. I keep muttering my heart hammering as the ball of hair grows and grows. I didn’t wash my hair yesterday – would washing it makes things worse. Or just reveal the inevitable. This morning I have to wash it and my bath swims with hair. I who cannot bear a single hair dallying in the bathroom or on my clothes or anywhere apart from people’s heads. I, who I’m avid about clearing up my own hair mess in a bathroom, I am wading through hair. I’m just as avid cleaning up now but the task is herculean. My Augean stable keeps filling up as more hairs fall from my head, catch in my comb, settle in the sink. Hercules had a day, I have a train to catch. I don’t know if I’m making things worse by washing it, but once I have started, I can’t stop.

I have to comb it out. I have to dress it. I am as gentle as my shaking hands can be. Eventually, it is done and it looks normal. You wouldn’t notice but I have hands full of hair to show Sean. He suggests an artist might make something of it, and we remember Mona Hatoum, whose enormous installations featured quantities of hair twisted and woven and turned into rope and curtain. I like the metaphor, but hate the reality. I really dislike that work. I think of concentration camps and the use to which inmate’s hair was put after their heads had been shaven. The only place for my great switch of hair is the compost – making new life. I hope it does. I think this is a good rehearsal. It is such a shock. And if I have the stem cell transplant and it all falls out, I have had a taste of what this is like. 

I wasn’t expecting it to fall out at this stage. You see…this is for the stem cell harvest. We were told we lose our hair only in the stem cell transplant, but it came out with this other chemotherapy. 

I will have, I have a taste of what that is like. It cannot be hidden. You see, everything else I have gone through is on the inside. I can hide away during the sickness. Make-up and a smile on my face. I’ve enjoyed being told how well I look, defiant in the face of the challenge of cancer, but everyone will see the hair loss. And however quickly my friends will get used to how I look, the initial view is a shock and to the general public, baldness on women is just weird.

Thursday, 10th October I am to have the transplant. So the worst has happened. And I’m still upright. I’m not now letting myself think for one moment. Well, just one briefly about what might have been, about the fact that my life might have resembled something relatively close to normal if the results had gone the other way? I determine this even as the bone marrow is destroyed by the killer chemotherapy Melphalan, and my harvested stem cells returned to me for my rebirth I will let myself be transformed in my spiritual marrow. I determined that this will be an experience to relish and be changed by for the better. Not something to shrink from and wish away. But oh, expletive, expletive, expletive, expletive, expletive, hearing this feels worse than hearing the original diagnosis of cancer, believe it or not. 

Friday, the 11th of October. How do you make a line shorter without doing anything to the line, you draw a longer line next to it. Now, I’m not at all troubled by my hair falling out. There’s no need to hang onto it. It falls like autumn leaves from a tree preparing for winter. It will all go and in the spring it will return. It is not precious to me anymore, not this failing thatch. 

My hair keeps falling out…this bit is outside the diary…my hair keeps falling out until finally when I wash it, what little is left turns into a massive lump on top of my head. I can do nothing with it, nothing at all. 

Monday, 14 October. I look at myself in the mirror inquiringly. This tangle has precipitated the moment, but I am ready, ready to shave it all off. I am to be shriven before I enter my anchor-hold. Encouraged by Sean, who is rightly convinced that for this task, I need a barber’s shaver not scissors we enter a barbers on Newcomen street, near Guys. I speak…it is a gentlemen’s barber, I speak to the man at the desk who has a kind face. I’m not a gentleman, I say, but I have to shave my hair off because it’s falling out anyway from chemotherapy. I have cancer. 

His face softens and he says, of course, and ushers me to a chair. I remove my cap and reveal the ruination of my head of hair. Sean sits in quiet attendance. Then this angel of a man gently oh, so gently shaves my head. Carefully approaching the tangled knot, working his way over the contours of my scalp. Leaving an inch of hair, which is masterfully still evenly distributed. A silver grey revealing my head, revealing me.

I look at myself in the mirror and I see that I am fine. I am revealed. And what is revealed is just fine. I don’t mean the appearance of me exactly, more than with nothing covering me. Nothing to hide behind or pretend with entirely on show, I am nothing to be ashamed of. I feel as vulnerable as I have ever felt, but I am also strangely relieved and liberated. I am fine until a customer who has witnessed the proceedings while having his own prolific hair cut walks past me on his way out and says, you look even better than when you came in – more bad ass. And then I dissolve into tears, and the beautiful angel, Al, quietly continues to give an artistic finish to my shaven head. We begin to speak to each other. I tell him a bit about my cancer. He tells me about himself. He is Kurdish, his heart is breaking over what is happening to his people in northern Syria. He says Kurds are not safe even here. ‘We are Muslims helping the West’, he says. ‘That makes us a target for those who think we are betrayers.’ We are in compassionate communion as Al carefully  neatens my crop. What is happening to me is so utterly unimportant in the context of the continued destruction of his people, but the tender attention Al gives my unimportant hair is our place of communion.

What I had dreaded with the deepest dread I had had in all this time since my cancer was diagnosed is to become a transcendent experience in which I am attended by an angel of the first order. It is one of the best experiences in my life so far. I am profoundly blessed.

Gillian: I think that’s an extraordinary bit of writing and I love the movement from this is going to be the worst day to to the best day of your life in a Barbers on a back street in central London, just through two human beings meeting each other.

And that sense of yes, it cannot be hidden, the cancer, became a freeing thing when you fully embodied so that the world could see what your going through.

Claire: Yes. Well put, Gillian, if I may say so. Exactly, exactly, it was the final step, if you like.

Gillian: Because we all cover ourselves in layers all the time don’t we, of pretending, pretending that death’s not going to happen, and that is the final elephant in the room, isn’t it? And as we start one of the reviewers of your book, I think Caroline Chartres said  this is not a book about dying, it’s a book about how to live.

Claire: Well I might live for quite a while yet so I need to listen to my own advice, I should say, incidentally, talking about is the way to live. This experience has very much fed into the work I do at Westminster Abbey with public servants because one of the things I’m very aware of with these people whom I work with is that they do have a carapace and need to have a carapace, a shell behind which they work. A professional face, if you like.

Because they do have to keep delivering professionally and consistently day after day after day and in a sense whatever’s going on with them, and sometimes, I mean, particularly you think of politicians have the most horrendous things thrown at them. And if you don’t have some protection, you get very, very badly hurt. But you must pay attention to the person behind the shell, behind the cameras, behind the professional persona. So we do a lot of work on that and it is using both Ignatian techniques and comedy if I may say so. Where you become, you make friends with your shadow self, you know, just like the person sitting with the person with cancer and all and all the experiences that I’ve had in this way, have have fed into this really subtle work with, with some politicians and civil servants and police and armed forces and all these sorts of people, journalists.

Gillian: And it’s dealing with uncertainty, isn’t it, because we all live with uncertainty, but looking like a person with cancer and you’re sort of living that uncertainty that most of us try to ignore all the time. And I sort of, I don’t know how you felt when we went into lockdown from a global pandemic. In the first few weeks when they did all the things that I didn’t think we could, possibly…they shut the schools! And I just I’ve got two young kids – nightmare. And so many things have happened, and suddenly, after a couple of weeks I remembered, I’ve been here before, I’ve had experience of the world being turned upside down before, and I wondered if you’d had…if that was a similar experience for you. We’ve dealt with uncertainty in spades before, haven’t we?

Claire: That’s right, that’s right. And now it feels as though one has many companions on the Way. So there’s nothing personal about this experience now, and I’m, I’m so astonished and amazed and impressed by the way so many people have walked towards that and and embraced it and made something of it and found in it sources of healing and help and hope, not just, not just bitterness and suffering, although heaven knows there’s been plenty of that.

Gillian: Yeah. And also, I think what comes over to me is your emphasis on this, this hard won discovery, if you like and luckily you have the gift of writing and communicating so the rest of us can enjoy this. What you discover through the suffering and the uncertainty is this deep sense of joy at the centre and and being…and not in a pithy way, but, you know, being stuck in a isolation room, you know, going through physical, deep, physical suffering to still be looking out for the connection with other people and the connection with the world around you. And in so doing, finding joy, I think that’s extraordinary.

Claire: What is really important about that is that you have to go through the pain to find it, that it is not a happy ending. This is not motherhood and apple pie, it’s not glossy and it’s not panglossian, it’s not Pollyanna. It’s really…I want to swear but I won’t, I’m trying not to…really hard. And this is I think, what Julian teaches us, this is what she asked for and a you wish it away – you don’t, you don’t. You know, neither is it masochistic or at least I hope it isn’t. It is just. And of course, the Christian story immeasurably helps because, you know, that Christ has walked through this, walked towards it and through it and realised the joy. But the joy is…Ignatius talks about finding your place of consolation. Sorry, finding your place of desolation, feeling your way to your place of desolation and there you will find consolation, but only there. And so you have to be courageous.

And, and turning out in the support of others, the support of Sean and the dear readers and others prayers all help that. You’re not alone in it. Julian helped that.

Gillian: And with the…you mentioned right at the beginning of our conversation, the sort of classical narrative of diagnosis and treatment and, and, and the condition you now live in alongside sort of the Good Friday, Holy Saturday and the Resurrection, do you see your stem cells bit as the Holy Saturday bit or are you feeling this, well, you just see we’re an extended Holy Saturday with moments of resurrection – when you meet Al the hairdresser or, you know, you get a good email, you know, in what sense are you still living that? Or is it more that you just discovered that, you know, it is through that Holy Saturday experience that you find God?

Claire:

Yes. And the resurrection comes again and again and again. So it comes every…So I have my treatment on Wednesdays, Thursday’s awful. On Friday morning, I wake up and it, I feel the wellness stealing back into my cells and it’s like a resurrection. It’s like I’ve been through a Good Friday, Holy Saturday, Resurrection each time I have to get the chemotherapy. And it’s certainly after the stem cell transplant as the stem cells started to do their work. The new stem cells, that was like a resurrection, but but no, in a sense I am still in Holy Holy Saturday. And that’s why it feels so hard, because it’s, you know what is trudging through. And I’m nervous, Jillian, about the 14th of July, which hopefully will be the last day of my treatment, because I’ve waited for this day for so long. And yet this cancer doesn’t go away, you know, and I can’t be too excited. I think everybody who comes out of chemotherapy and treatment must feel this. You have to somehow you don’t. ..you dare to hope. But the hope is, is the cost of the hope too much because the pain of it coming back in, the hopes being dashed? And the way cancer can play with you like a cat close to the mouse and not wanting that, but also not wanting to deny the life that’s rising up in me and the looked for joy and relief of this as well. It would be the 16th of July I suppose I might feel better after that last infusion. It is very hard, it’s very hard and there’s a dynamic about it. And I think this is again the crucifixion resurrection dynamic of of the…because part of me thinks, well, let’s just accept the mortality and kind of go to sleep under it and and make one’s peace with it. But it’s not what happens and I felt that in my body, physically in the isolation room, that life wants to live and it grows in you and you see it in spring. You can’t deny it and you wouldn’t want to deny it. But the cost of that is this it will also die. 

Gillian: Yes, always a place of tension, isn’t it? You know, it’s so like you’ve got the whole life in a very focused way. I’ve got a disabled friend who’s physically disabled and he says, well, pointing at me. He said, well you’re your a TAB – a temporally Able Bodied person.

That’s how we in the disabled community think of you because you’re born disabled, you will probably die in some way disabled. You’re just living in a bubble where not thinking about it all the time going through sort of extreme treatment. And of course, the other aspect is other people want you so want you to desperately be well again. So on the 16th of July 14th/16th, they’ll be thinking, Yay we don’t need too, you know this, you know, and then you handling their relief, while keeping your own worries and doubts as well. And I was particularly struck with some of your writing around, this is…you consider this and correct me if I’m wrong, not a terminal diagnosis but a condition that you live with.

Claire: Yes, that’s right.

Gillian: How useful that is for everyone to understand that we all live with conditions and in some ways, so the reason I’m interested in this, I’ve got a child who’s got a non-life limiting where we thought he was really ill and it this turns out to be a condition, and he’s only seven. So we keep saying, you know, you’re not ill it is the condition. It’s who you are. And using that language, I find, you know, he’s only seven. I’m sure he’s not…he’s thinking about lego really. But I’m just curious, that’s a liberation for him because I’m teaching bodies have bits and bobs that don’t work sometimes so well, but it’s who you are. It’s, you know, his his identity now.

Claire: I think and this is something I think people who are evidently disabled teach us, that we are all disabled. Oh, this just shows a bit more on some people and we need to learn that and be comfortable with it and and embrace it and and not look for this weird notion of perfection. It’s simply not true of anybody.

Gillian: Is there any bit you want to read as we come to the end.

Claire: This was as we were going into the first lockdown, this is right at the end of the book.

Sunday 22nd March 2020, this is. I read on the Myeloma UK website that in the next few days I will be advised to self-isolate for twelve weeks.

So be it. Here’s my prayer of preparation. 

GOD!

Help me to let the waves of fear pass over and away 

Help me to be porous, not prickly with the universe 

Help me to practice what quietens my mind 

what generates energy 

what makes me laugh

what helps me sleep

Help me to think of a good, disciplined way to spend time online 

Help me prepare my stubborn soul to ask for help

I really need help with this

Help me to understand that I am helping just by staying safe.

Amen.

As I write the prayer my heart falters and my tears fall. So many more miles to go. How will I bear it? Like this – I put on some lipstick straight in my shoulders, open my heart and walk towards the next challenge.

Gillian: Claire, you mentioned Julian of Norwich a number of times in this podcast, and the most famous thing is to think that most people know that she wrote, if they know anything about her, is that she wrote that all shall be well and all shall be well, and all manner of things shall be well. In what way do do you find that comforting as you carry on whatever this pandemic means and for your years ahead? All shall be well.

Claire: It’s a soothing balm. I mean, actually, that’s one of my least favourite sayings of Julian, because it because it sounds a bit panglossian, a bit too easy. But of course, her saying it, given what she’s been through and what she’s able to describe, it does have meaning and am a lovely thing, someone said recently that I thought, was a good interpretation of this was, she said ‘everything will turn out all right and if it isn’t all right, it isn’t the end. You know, it hasn’t come to an end yet. And so, so yeah, I do find a comforting. The more comforting phrase I have from her is you shall not be…God said… God did not say you shall not be tempested and tried,  what God did say was, you shall not be overcome. And in that someone said that to me when I was at my absolute lowest ebb in that in the hospital and it was the most fantastic gift. Ian Christie sent it to me.

Gillian: Claire, thank you so much for giving us your time on The GoHealth podcast. Everyone needs to buy this book and read this book because it’s about how to live, how to live well and how to live fearlessly and find the joy and be porous. I think what I’m going to remember about our conversation I’m going to try to be porous the rest of the day. I think it’s a beautiful statement – all this be mindful, be in the moment, we’ve heard it so many times but be porous is like an interaction, isn’t it in the world that we’re living in? And I really, really love that.

Claire: Thank you. It’s been a complete pleasure to talk to you. Thank you.

Gillian: So that was my conversation with Clare Gilbert. Thank you so much for listening. It was incredibly moving and inspiring to chat with her, and I hope that you enjoyed it as much as I enjoyed recording it. But you know what it was quite a tough one. I nearly cried at least once chatting to her, incredibly inspiring but really quite tough stuff. And so if you found you feeling a bit fragile or emotional right now because she was going through some really difficult aspects of life around cancer, treatment and remission, you’re finding it tough to take a moment for yourself right now just pause, take a moment to pray. Take a moment to take care of yourself. 

And we have got a busy time coming up in the Guild. We have got our first ever Advent journey it’s called Waiting Well. And you can sign up today over on the website. Just look under courses or right there on the menu. Sign up today and get emails every single day of Advent, that’s from the 28th of November directly into your inbox.

Emails full of wisdom, inspiration, prayers and practices to deepen your spirituality. To deepen your connection with God. To explore the issue of waiting, to find ways to improve your health, your hope, your patience throughout the holy season of Advent as we wait for the birth of Jesus. It is completely free to GoHealth members. But you know, if you’re not a member of that community, it’s only £4 to join and you get so much more. You get monthly bundle of resources, there’s a fence, there’s communities it’s fantastic. So do check that out ‘Waiting well – the Advent journey with the GoHealth community, all of the information is on our website and across social media on Facebook and Twitter. 

We’ve recorded a really cool little film about waiting well with the words of Paula Gooder, who recorded our next podcast in this season. So we’ve used a bit of her wisdom on waiting and advent to create a cool little film. So do check it out on our website and across social media. It is all happening there at the moment in the Guild. There’s so much, there’s so many other things going on to do. Check it out. I only have time to really talk about the waiting well, Advent journey. 

So rate and subscribe to the podcast if you’re still listening to me. We want as many people as possible to experience these healing conversations and connect into us, and that would be so amazing to rate and subscribe to this podcast. Yeah, I’ve already given it away. The next podcast is with Dr. Paula Gooder, who is Canon Chancellor of St Paul’s Cathedral in London and a very notable theologian. So do look out for that. If you subscribe to our podcast today you won’t miss it. So in the meantime, God bless. Let’s connect and chat. Let’s keep learning to heal because together we flourish.

Links:
Myeloma UK website
Miles to go before I sleep by Claire Foster-Gilbert
GoHealth community review of Claire’s book
Caroline Chartres review of Claire’s book on the Church Times website
Waiting well – the GoHealth Advent Journey
Join the GoHealth community

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Facebook: @GuildofHealth

Instagram: @GuildofHealthWebsite: gohealth.org.uk

Music: Return by Lane King from Upbeat Music

Podcast produced in-house by the GoHealth team.