If you’d like to help Tall Man and other blood cancer patients, please donate your bone marrow in the country you live in, and if you have money, they’d love you to give it to Anthony Nolan in the UK or to Be the Match in the US.
– Lines On Marriage, Joel Brouwer
The poet Joel Brouwer says that marriage is not a story: I believe him. We were almost married, and that is not a story either. In our flat I keep finding scraps of paper with my notes, things I am amazed I ever knew: that, for instance, Scottish registrars will let you cherish and obey, but an English civil service must be entirely areligious; that elope to Scotland?! was once a feasible idea; that you can purchase a modest three-tiered cheese wedding cake for the sum of £75 from Waitrose, delivered anywhere, even Scotland.
I liked the idea — it made me laugh — of promising to cherish and obey my boyfriend, and I liked the idea of being worshipped with the body and endowed with worldly goods, and I loved the idea of promising aloud (as they have said for five hundred years here) that we were together for better, for worse, for richer, for poorer, in sickness and in health.
We thought that we had done all of those things, but it turned out that we had barely scraped the iceberg: we planned, vaguely, to elope in the autumn, and in the summer my boyfriend — my partner, my Tall Man, my heart — was diagnosed with a rare, elusive, and difficult to treat cancer of the blood. That was eleven days ago. This is not a story, but I am telling it to you as if it is, because it makes it easier.
(A note: you are going to have to forgive my tenses. It is very difficult to parse time in a cancer ward: the light remains clean and filtered, as does the air, and nurses come and go at every hour. The future is uncertain, the lights stay on all night. And it has only been eleven days: I am displaced, a thing out of time.)
Eleven days ago, I lived in Stepney, with my boyfriend. Stepney is a parish in East London: it is grimy, poor, and beautiful when you get off the main road. There is a church, and a farm, and a street of houses that survived the Blitz, on a blue cobbled street.
The past is a different country. He was a journalist. I was a writer. We were 25 and 22. It was July, and London was hot and clammy, and every day I went to the library to try and work on my book. Like all young women like me in East London, I was working on a book. It was a cookbook. Every day I cooked things, and my boyfriend would eat the things, and praise them. We went for walks, and to the pub, and to the local farmer’s market. We read a lot. We talked a lot. We had dinner parties, two or three a week, in the tiny flat (we all called it that: Tiny Flat, capitalised, like a city), and our friends would bring guitars and cheese and wine. We were very happy. (Pettiness, and mediocrity, which is life itself, and as long as you are with me I wish never to be cured..)
We were very happy, although there had been, lately, something uneasy there, some shadow at the edge of my mind. I suspected privately that I needed to return to therapy: I suspected that I was succumbing to a kind of paranoia, a particular and peculiar kind of paranoia that centred on my boyfriend, who was the centre of my world. I remembered vividly that a psychiatrist had once written “She deeply fears losing her boyfriend, with whom she has created an ideal home life”, and I thought that this was true, and I thought that this was the reason I believed (fully and entirely) that my boyfriend had cancer of the blood.
As it turned out, the reason I believed this was because he did. He did have cancer of the blood: a rare cancer of the blood, that begins at Stage IV, and that Wikipedia notes, gravely, as “generally incurable”. His oncologist tells me this is not necessarily true, but that it is so rare that he cannot tell us anything else.
What is not rare, according to the oncologist, is that a person close to the patient will somehow sense the cancer. Animals do it, he told me. Animals sense sickness, and sometimes people can do it too. You did. You must have sensed it, the oncologist told me, within days of the cancer manifesting in him. In our case, this happened around twelve weeks ago: twelve weeks ago his body turned on itself, eleven and a half weeks ago I saw that his body had turned on itself, and eleven days ago a routine GP appointment became a cancer diagnosis.
He went to the GP with a vomiting bug, and never came home to Stepney. We are not sure when he will. We think that he will. We hope that he will. Again, said the oncologist, we can’t really tell you anything, except that chemotherapy only works on two-thirds of the people with this cancer, and that for the one-third of people for whom it does not work, there is nothing further we can do. It is a very, very rare cancer. I am not telling you the name on purpose: I don’t want you to look it up. The oncologist told me I was absolutely not to Google. 180 people have had this cancer ever. 120 have successfully been treated with chemotherapy. Because of patient confidentiality, they cannot tell us how many of those 120 people survived further than that.
Two-thirds, or 66%, or 120/180. It is a B at GCSE. A 2:1 at university. My friend Harry tells me that if a team on Football Manager has some stat of 66%, they are unbeatable: I am clinging to this. And, I notice, it is the amount of Stepney that was destroyed in the Blitz.
I have been thinking a lot about this fact, this flip side chance to our own: I cannot decide yet if this is a good or bad omen. Stepney, after all, remains. Whatever else, Stepney remains, seventy years after the fact, and is (was? is) our home. There is, I told you, a row of houses behind our block of flats that survived the bombings, on a blue cobbled street. They are beautiful. I think of how Stepney endured, and I think of the people who lived here then, and what they endured, and how they did not know if they could. They were mostly women, I think, who walked these blue streets before I did. Mostly women, enduring.
In the days before, when the men went to war, and the women waited, the future was uncertain. Two-thirds of the parish destroyed: a two-thirds chance that your house would be the one gone, a two-thirds chance that your home would be the one gone. Not to mention, of course, the chance that your boy would go, too. Our chances of some kind of future are double theirs, and theirs half ours, and still they went on.
They painted their mouths with lipstick, and they painted their legs with gravy granules to mimic stockings, so nobody would think they had let their standards slip. They kept the standard high, kept the flag flying, kept the home fires burning. And they went on.
And so, I suppose, must I.
Their chances were half ours: they kept on. Our chances are double theirs: I must keep on. Every day, day after day, for as long as it takes, whatever it takes. They kept on. I must keep on.
So I do.
I have a friend, and her name is Caroline, and the first awful day (when we heard “cancer” for the first time), she met me outside the Tiny Flat with one bag of cheese, and another of cleaning things, and she said: Bisto legs, Ellabell. Bisto legs.
Bisto is an English brand of beef gravy granules. It is English food of the kind that everyone expects from English food: cautiously flavourful, substantial, heavy.
Bisto is primarily advertised — and has been since about 1910 — by the Bisto Kids. The Bisto Kids are two orphans in ragged clothes, raising their noses to the scent of beef gravy granules, and they sigh “Ahh, Bisto!” Dissolved, it is the stuff that women used to paint their legs with, when the war was going on, and you couldn’t get nylon for love nor money.
And what Caroline meant by Bisto Legs is this: paint your legs. Don’t let them see you can’t get stockings. Don’t let this make you less than you are. Find a way. Make a way. Keep on. Keep on keeping on.
This is the Bisto legs effect, then. Stockings straightened, lipstick on. Women keep sending me lipstick in the mail, and I wear it everywhere, and I wear it loudest on the cancer ward, because I want my Tall Man to think I’m pretty, and I want my Tall Man to know I want him to think I’m pretty, and I want everyone to know: we’re in love, and we’re young, and we can and shall endure. We shall endure with a stiff upper lip, and Dior: Fuchsia Utopia in my handbag, and Bisto legs, and chemotherapy waiting in the morning. For better, for worse, in sickness and in health. Always too early, or too late, but always.
Tags: beauty, bisto legs, cancer, ella risbridger, health, lipstick, love
Oh wow. My own secret fear is what you’re enduring right now. Best of good luck and health to both of you.
Whatever you need, I hope you get it.
From one London Toastie to another, I wish you and your Tall Man all the luck in the world. I am on the ANT register already, and a few weeks out from my last blood donation, but I will keep encouraging other people to do these things and to donate money if they can, and I hope it helps. This is beautiful; thank you for writing it.
(I did not know that about Scottish civil ceremonies; it’s tempting. I cannot face the thought of a church wedding, but the words of the BCP service are lovely.)
I totally feel you, lady. My husband was diagnosed with a similarly rare and aggressive brain tumor a few years ago. With the exception of gratuitous “cancer kid” movies like The Fault in Our Stars, society doesn’t really prepare us for facing fatal illnesses in our 20s.
Ella, every time I read something you or John write, my heart swells with love for you.
This was beautifully written, and you are (both) so amazing, and we are all pulling for you.
Thank you for writing this. Love and hope and strength to you and to your Tall Man.
I thought of you and #bistolegs yesterday. I had to go for an MRI, which I hate and fear. I decided to do my hair and wear lipstick and something pretty, like you’re doing for John. It a made a difference in my mood. Everyone smiled at me; the MRI techs said I looked pretty. We flirted. I thought that maybe wearing lipstick and makeup is a kind of armour that keeps evil spirits at bay. Maybe it works.
Ella, I’m praying for you.
I love this, I love this, I love this. xxxxx
I’m currently undergoing a diagnostic process for an unknown blood disorder that has already resulted in two hospitalizations and my being MRI’d CT Scanned, Ultrasounded and biopsied until they’ve run out of tests. I am now awaiting the results of a difficult bone marrow biopsy (difficult because they found my bones are surrounded by calcification). Every time I go for a test, I wear my lipstick and my stockings and my high heels and strut in like I own the place. The day I can’t do this anymore, I will have given in, and I’m not about to give in.
Cancer is truly a blitz – the first time I heard it about myself, the whole world narrowed then exploded. I hope totally and completely that things will be OK for you, and that the odds offer you some comfort. This is a beautiful piece of writing; thank you for sharing it with us, and please know that we are all pulling for you and your wonderful Tall Man.
beautiful. all the strength to you in the coming days. *slips you a Giorgio Armani Lip Maestro in 400 RED*
Kind, lovely Ella, I’m so furious that this is happening to you two and not to some awful people. I will keep a corner of my heart working away for you.
I call my husband Tall Man, too. In tears now – thank you for sharing, and I wish only the best for you and your Tall Man’s future.
I will tell you now, the poem that begins #2 is Rebecca Lindenberg’s Which If I Have Not Mentioned It Yet I Feel Compelled To Address, and it starts “Tall, tall, tall, tall, tall, tall man…” She had a Tall Man, too, and she writes so beautifully about him.
I wish you the best.
wishing you all the luck and for this to be a distant memory story hazily recalled on a 60th elopement anniversary after you’ve worn a million pairs of silk stockings
Yes please. Thank you. That sounds like a very, very good thing.
lovelovelove. and prayers, too.
Oh Ella. Sending you both so, so much love.
Hope and strength and so, so much luck to you, to you both.
Sending you all the love <3
Oh Ella, this was wonderfully written. Also thank you for explaining #bistolegs because I have seen you use the hashtag and had no idea what it meant. I’m wishing so, so hard for both you and the Tall Man. <3<3<3<3<3
ANT register joined. Such eloquence in your writing, as ever (I have been following your beautiful food blog for a while).
Ella, you are wonderful. I wish I could be a quarter as expressive as you. Your writing is magnificent. I am caring for a family member with a weird and aggresive cancer and all that you and John write resonates with me. My family also deal with this situation with the same humour and approach and love and hope. Keep going – you are a wonderful, amazing person.
ps I also very glad to have now come across your cooking blog – blows Nigella out the water.
Beautifully written and so close to my heart too. I have 15 years on you but I know your pain. My husband has pancreatic cancer. He was informed it was inoperable after they cut him open and gave him a gastric bypass. We don’t have the pain of chemo but I’ve been there by the bedside. I had my knitting instead of lipstick and he knew I would always be there. He was given 6 months to a year, now just over 2 years ago and you remind me of me in the early times.
I wish you all the very best and hope something good can be done. No matter what any stats say or any oncologist says only your tall man can tell you how he feels and if he’s suffering. My heart is with you and I do hope you can come through this strong bisto legs and all. its what we do. xx
You write so beautifully Ella, you’ll both be in my thoughts. Sending love to both of you <3
Sending you both so much love and tea and bisto. I’ll be nudging everyone I know to get them on the register.
You write beautifully Ella. You always have done misseellabell. I am telling people about you, but how I wish I was telling them about your book and not about this. (GothicBlue)
I had to read this so very slowly, one or two lines at a time, because this was like a particularly elegant kick to the stomach with each and every line.
I am so impressed with you- not so much for doing this really hard thing with the person you love, because of course you would, because of course it’s not like you have much of a choice. And for those things, I am many things– “proud”, maybe (in the way one can be of someone you only sort of internet-know). But I’ve done really hard things to help really ill loved ones, and I have so much empathy for that, but that isn’t what leaves me deeply impressed. What I am just so blown back by is how well you could WRITE about it. The lovely, relentless, unforgiving prose. The structure. The joy and heartbreak. The clarity. Editing only helps so much-11 days out of a diagnosis, there is no earthly way that I would be able to type enough words in a helpful order enough to provide an editor with even a sort of general accounting of events, never mind the emotionally resonant piece you have written here.
Now I’m going to type some things that you probably already know, that probably go without saying, but sometimes it’s good for someone to say them anyway. Please know that we are here for you, in the ways we can be. Please know that we’re here for you on good days and bad, big things and little things, on days you write this beautifully and on days when you can barely think, never mind type. Please don’t EVER feel like you need to keep us up to date for *our* sake, or that we’re entitled to any information you don’t want to give us. Toastie love is unconditional in these sorts of situations.
Thank you so much for this comment. It’s reassuring, you know, to remember that I am a writer, whatever happens, and whatever happens, I will and can write. Thank you.
As far as editing goes, this is pretty close to my original draft- but the Tall Man had first eyes on it, and dragged out anything too self-indulgent. Top tip: when you find a REALLY great editor, marry them, or at least move in with them on the third date.
You are a remarkable writer and this piece is so strong and deeply moving. I tend to obsess and catastrophize about nearly everything, but having myself or a loved one being diagnosed with some drastic disease at a young age is a prospect that scares me so badly that I try never to even think about it. I honestly cannot imagine what you and your partner are going through right now. You’ll certainly be in my thoughts, and I am sending you all my good wishes.
“my boyfriend — my partner, my Tall Man, my heart”
i’m so sorry. you are great at what you do, keep doing it and all the luck in the world to you and your tall man
You’re all so lovely. One thing- if you DO want to donate money to Anthony Nolan, you can do it here- https://www.justgiving.com/John-Underwood-Anthony… -just so then we get to feel a bit smug about the money coming from US and OUR EFFORTS. It all goes to the same place, but this way they can keep track of what’s coming from what sources. And it makes me and John cry when we read the nice messages.
We love you so much, Ella!
I’m so sorry – all I can do is share and beg people to get registered, but I will do that. Thoughts and prayers and whatever else I can send you, all being sent for you and your Tall Man.
Ella, this is all so heartbreaking. I’m thinking of you both. (And sending dollars too.)
As soon as I read this I remembered you posting a few weeks ago about your intrusive thoughts about him having cancer. How unimaginably horrible that it was true. I just saw that you triaged people out of your face and off onto others on twitter, which is a brilliant move. I hope you are able to keep or make space to care for yourself, too, through this. And as cosetthetable says, Toasties got your back.
I. Love. You.
I love you toooo, One day, we will all go to Rome together. xxxxxxxxxx
My husband was diagnosed with a rare lymphoma four years ago. If his oncologist had any inkling of the fears and desires that drive human beings, we would have been told Not to Google (scary pictures!); instead, we had to settle for passing that wisdom along to friends and family when we told them the news.
This essay took me right back to those first few days in the oncology unit. When we didn’t know what was happening, and he alternated between excruciating pain and the fog of opiates, and we were thrown headfirst into Hospital World. Four years out, he has only a vague memory of that week, and I often find myself filling him in on things I thought we experienced together.
He’s been in remission for just over four years now. Next summer, we can use the word “cured.” I wish you and your Tall Man many years of strength, health, and happiness.
Thank you for sharing your story. I hope for the best, for both of you. You’ve got the best tools to get you through – lipstick and love, and I’ve got my fingers crossed.
Also, I have seen the efforts that you and John have gone to, raising money for Anthony Nolan. I hope against hope that this saves not only John’s life, but the lives of others who might otherwise never be able to reach this treatment because of lack of awareness and funds. It’s beautiful, and you can do it.
My husband, my Tall Man, also has blood cancer. What struck me in your essay as so familiar is the idea of enduring. When I feel like my strength is draining or I’m indulging in a little too much self pity (Jesus, I’m not even the one who has cancer!) I look to women in the neighborhoods in the Bronx where I live and work. I see them enduring and I realize this is what I must do, too. I love a man who has cancer, and for as much as I never wanted this to be our story, it is our story so the only thing we can do is try to be strong in the face of uncertainty. And avoid Google.
I wish and hope and pray for the best possible outcome for your Tall Man and for you, too xo
Oh, my. Reading that was a sorbet for my soul. I hope your boyfriend makes a full recovery. With you beside him, I doubt he’ll want for love, support or anything else that will make his journey more bearable.
Be kind to yourself – as well as your Tall Man – in these difficult times. Thank you for sharing this beautifully real writing. I believe in the power of enduring – and positive thought. You are spreading a wildfire of positive thoughts around you and your Tall Man in writing this piece. You both have my love. xx
I have a huge amount of respect for you. There’s nothing else I can say I think, except that I did my DNA test for bone marrow donation last night, and I hope that you both get everything you need during this time.
A close friend of my mothers had breast cancer a few years ago, and after some botched care has now found out that she has bone and brain cancer (I don’t know if its related). My mother is doing everything she can, but B is pretty much preparing to die at this point, and because of circumstances has to move back to her family, which is away from all of her friends, its pretty rough
Ella, this is a brilliant piece of writing, and you are excellent.
Ella, this is a brilliant piece of writing, and you are excellent.
Thinking of you. Thank you for sharing this writing with us.
Oh no. Oh my heart.
I’m sending love and positive vibes. Please take care of yourself.
You have used words so eloquently for circumstances where words are without meaning. I was diagnosed with a rare cancer at 28. I am 53. It was not something that I did (I had the worst, negative, self-pitying attitude possible). I was just lucky. Miracles come to a few and I hope so much that this happens to you and Tall Man.
Great, great, great work. I am so grateful for all the women writing the fuck out of cancer and other terrible stuff happening to people they love – and sharing their work. It’s the most useful response. My lovely little boy is being treated for leukaemia. I wish I’d been brave enough for lipstick in the early days. I don’t think I showered for a week, and that didn’t help at all. Go well.
Beautiful. Thank you.
Five years ago I was diagnosed with a rare cancer. “I am displaced, a thing out of time” hit me like a rock. I remember saying to my sister, “I have become a pioneer to a country nobody wants to visit.”
The rareness is so, so hard. I hope you can find fellow travellers, whether or not they’re in the same situation you’re in. It helps the loneliness.
“Best of luck” is something we say casually, now that the meaning’s been washed out of the syllables, but I wish it for you. Best. Of. Luck. May every turn and twist and new *thing* that happens be the absolute, best, luckiest thing for the both of you.
I wish you all the best. You’ve got people all over the world sending you and your Tall Man healing thoughts and cancer-kicking vibes. And your writing is beautiful.
I wish you all the best. You've got people all over the world sending you and your Tall Man healing thoughts and cancer-kicking vibes. And your writing is beautiful.
“Animals sense sickness, and sometimes people can do it too. You did. You must have sensed it, the oncologist told me, within days of the cancer manifesting in him.”
This happened to me, too. When my young son developed blood cancer, I knew something was wrong immediately, even though there were no obvious symptoms. I just had an overwhelming feeling that he was about to go through something terrible. I remember lying next to him and crying for ‘no reason.’ Looking back on that moment has always been very disturbing for me, because it seems so inexplicable. I was glad to read your story and to know of someone else who has had that strange feeling. You are in my heart, Ella, blessings on you both.