1 How it began

The day my life changed was one of those beautiful, mellow early mornings in September, a little hazy but with the sun beginning to break through. I was in the bathroom early, before six. I like that early hour of the day before the world really awakes, and as so often, it gave me an intense sense of well-being. I remember I was wearing one of my favourite nighties, a blue, long, lacy one, and with the quiet joy of that morning I hugged myself… and that was when I felt something hard under my middle finger. I knew instantly that this was bad news.

It took me a few minutes to gear myself up to touching it again, and yes, it was still there. And it was definitely not the kind of thing I’d ever had before, so I went to the GP’s the next morning.

A week later I was at my local hospital, Whipps Cross, for a mammogram, an ultrasound scan and a biopsy, which nearly made me jump off the table – it felt like a stapler being deployed inside my body. The diagnosis was due on 29^th September – our wedding anniversary.  And much as I was trying to reassure David, my husband, that most breast lumps turn out to be benign, I knew from the beginning that mine would not. That those two weeks of waiting were my final days of being normal, of not being a certified cancer patient.

“The lump in your right breast – I’m afraid it’s not good news, it is a cancer.” The voice of the consultant, a woman of perhaps 40 from a South Asian background, was gentle as she delivered the grim verdict. Much to my relief, I heard my own voice remaining steady as I moved the conversation forward, using the list of questions which (as any journalist would) I had prepared before the meeting.  All of a sudden, there was  a dry, rasping howl of pain. It came from David, who’d been sitting quietly by my side. Much of that conversation I have now forgotten, but that raw torment in his voice will stay with me for as long as I live.

16 The yew tree and the blackbird

February 2017. I’m on docetaxel now, otherwise known as taxotere, a chemo drug which is made from parts of the yew tree – that tree often found in church yards which can live 600 years or more and has inspired human imagination since pre-Christian times. The needles are so poisonous that (so I once heard a farmer say) if a cow eats them, the first thing you know about it is that the poor beast collapses and dies.

So it’s highly toxic stuff. And it leaves you feeling well and truly poisoned. For the first time in my life, I can no longer run, even a few steps; in fact, I can barely walk 200 yards, and then I feel so exhausted that I don’t care whether I sit down in the kerb in full view of passers-by. Blood-tinged water is running from my nose almost constantly. And in every cycle, the drug causes countless mouth ulcers to spring up along both sides of my tongue.

These ulcers, trivial as they may sound, are ridiculously painful – so much so that they sometimes leave me curled up in a ball on the carpet. Any solid food, even the kind that comes in little baby jars, is out of the question. All I can manage is tiny sips of energy drinks sucked through a straw. And for four or five days each cycle, the pain becomes so unbearable that it renders me unable to speak.

This reduces me to writing signs to communicate with David, or speak in improvised sign language. Touching my heart and then his, following by describing the widest possible circle with both arms, means: I love you to the ends of the earth.

A couple of days ago, I felt so awful that all I could do was lie on our bed, arms outstretched, eyes closed. I was feeling, without a doubt, the worst I’d ever felt in my life.

And then a blackbird started to sing outside my window.

I love the song of the blackbird. I have heard nightingales sing in both Germany and Iran, but nothing, to my mind, compares to the simple and melodious beauty of the blackbird’s song.

As I was lying there in wonder listening to his cadences, I became aware of another, much more distant sound: the voices of schoolchildren, squealing and laughing in the playground at the primary school down the road. Voices of joy and health. Voices that said: life goes on.

They say that the last sense to go is hearing. If, when I die, I have the good fortune to hear these two sounds again, the song of a blackbird and children at play, nothing could be more beautiful. It was the beauty and meaning of those sounds that saw me through the physically lowest point to date in my chemotherapy.

But even if I never hear them again, they will continue to sing in my heart.

15 Called to life

My spiritual director has encouraged me to consider what it means to be called to life. It’s not a phrase that occurs in the Bible literally; and in my situation, still awaiting that next scan of my lungs to determine whether the cancer is terminal, it’s tempting to think that I may well be called to death, and quite soon. So how can I make sense of being called to life?

Some ideas come from Michael Paul Gallagher, an Irish Jesuit who charts his inner journey during terminal cancer in his book, Into Extra Time. This is well worth reading for anyone facing terminal cancer or another life-limiting illness.

“This is all there is for now”, he says about his very reduced life of hospitals and sick beds. “Make the most of life and love. But in faith, life here is not all there is.”

He also quotes the Book of Common Prayer:  “In the midst of life we are in death.” To which he adds the reverse perspective, “In the midst of death we are called into life.” Precisely the same words my spiritual director used. Sometimes, it seems, I need to hear them from more than one person, just so that they sink in.

If God has created us to live, He has called us to life – in the sense of not just existing, but living well. For me, then, “called to life” means that I want to try and make every day the best and most meaningful it can be – for David, for my family and friends and everyone around me, and in my relationship with God. However poorly the chemo makes me feel, I want to prevent myself from sliding into a stupor of nothingness, or wasting time on things which are not meaningful.

So being called to life is essentially reaching out in love, whether or not I fully feel that love in the midst of my chemo fog. Reaching out in love is a choice, not a feeling – but once I do reach out, to David in tender words and actions or to God in prayer and at mass, the feeling usually follows.

And then, a moment of love can fill eternity.

14 Peace, and a candle

When I was a teenager, going to confirmation classes came with an obligation to attend church twice a month. I was not very religious in those days, and it was definitely uncool to be so, but I was brought up to do as I was told. So I went every other Sunday. And one thing I loved about it was the blessing.

More specifically, the way the pastor at our Lutheran church would say it – with a loving, almost prophetic intensity that I have never since heard matched anywhere else. “The peace of God, which passes all understanding, keep your hearts and minds in Christ Jesus. Amen.” (Philippians 4:7)

In German, that ‘understanding’ is rendered more as ‘reason’, with all its connotations of intellect and cognitive prowess. The peace of God, this blessing says, is higher than all that – and still firmly in place when our reason or intellect hits a point where it’s out of its depth, or of little use. Where those of us who are used to solving all problems with our intellects finally hit the buffers.

I sometimes remember this blessing when one of my friends with a towering intellect and no sense of faith (and of those you pick up a good few during a decades-long career in broadcasting) says about my faith approach to my cancer, kindly yet a trifle condescendingly, “Well, if it helps you…”

I can hear what they are thinking. Here’s a woman who’s found a crutch in a sticky situation, and fine if she needs it. But I wouldn’t fall for that kind of stuff. It just doesn’t stand up to intellectual scrutiny.

That, of course, is the whole point about the peace of God. Intellectual scrutiny cannot conjure it up, nor dissect it. It’s a gift from another realm. One I could never have predicted I would receive.  Certainly not one I deserve. But one that I have received, and am continuing to receive, as I move forward on my cancer journey. It’s a gift that truly passes all reason, and one for which I am truly grateful.

As for my slightly condescending friends, I sometimes light a candle for them when I pray in front of the image of St Jude, patron saint of seemingly hopeless causes. Not that I think that any of them are hopeless. But should they ever face a potentially terminal diagnosis like mine, I pray that that they will let themselves be open to that peace which passes all understanding. And perhaps to a vision of a realm where reason doesn’t reign supreme.

13 A half-plucked bird

After three cycles of chemo, apart from walking in a cloud of chemo brain fog, the physical side effects are getting a lot worse. In spite of ice cap treatment, I’m losing a lot of hair, and I now look like a half-plucked bird. It makes me feel very self-conscious. Very old, like a crone who’s just crawled out of some hovel. And that’s horrible.

I’m struggling with scarves and wigs. Scarves attract people’s attention. I can still wear a scarf over the back of my head and leave the front as it is, as my hair is still growing well there. But it’s a scarf. My Muslim postman who brings the parcels, when he first caught sight of me with that scarf on, exclaimed, “Ooh, beautiful lady”.  Bless him. But of course with other people and in other contexts, you get quizzical looks.

And my wig makes me look like a different person too. The other day I was meeting a couple of friends at a restaurant. I was there first and already seated at the table. Number 2 came in and also asked the waitress for a table because she clearly hadn’t spotted me, and when she finally did see me after much vigorous waving on my part, she said, “Oh, I didn’t recognize you.” That kind of thing is difficult. It made me feel very self-conscious. Hair is just so important to who you are, or feel yourself to be.

That’s what cancer does to you: in the eyes of the world, you are no longer quite you.

Many women shave their heads, and some of them almost elevate that into an ideology. They call it “brave the shave”, and some actually do it before the chemo begins and then post their bald selfies online. I admire them – but that’s just not me.

There is such powerful symbolism to a woman without hair. There are good reasons why women in France who formed relationships with German soldiers under Nazi rule had their heads forcibly shaved when the occupation ended. It was a way of taking away their beauty, their femininity and dignity.

And that’s what losing your hair does. In purely physical terms, and emotionally, it’s  definitely the toughest thing at the moment. Far tougher than the possibility, still very much present, that my cancer may be terminal. Call me mad, but that’s how it is.

12 Prayer intermezzo

I would describe myself as socially liberal in many ways, for example with regard to gay marriage. Sex outside marriage as well; I don’t think God worries about that anywhere near as much as some in his church do. But I do find traditional set prayers, especially those of the Catholic and Orthodox churches, enormously helpful and illuminating. Several of those, repeated over and over again meaning them, have brought me to the place where I am today.

One of those is the one I usually say silently after taking communion:

Almighty God, I thank you for feeding me

With the body and blood of your son, Jesus Christ.

Through Him I offer you my soul and body

To be a living sacrifice.

Send me out in the power of Your spirit

To live and work to Your praise and glory.

Before my illness, I often prayed for insight on what this meant for me – living and working to God’s praise and glory. Offering my soul and body, my entire self, to God.

Now that I have cancer, I have to figure out what it means to offer Christ this broken body. But I don’t want to offer it any less. Working to His ‘glory’ may mean something very modest and hidden now, but to me it’s as valid as it ever was.

11 Chemo brain fog

Today is Sunday 8^th January 2017, and I haven’t recorded anything for a while. The reason is that the chemo has got a lot tougher. I’ve now had three cycles of it, and the third has been quite vicious. About ten days after the infusion, I’m only just beginning to emerge from feeling constantly queasy and nauseous. The world has become an assault course of horrible smells, mostly chemical smells such as cleaning fluids and petrol and diesel fumes. Some foods smell horrible, too, and I carry my husband’s dinner tray as far away from my nose as I can. It’s amazing just how sharp your nose gets when you are on chemo.

But the worst side effect has been the so-called chemo brain fog. Chemo fog or chemo brain is exactly what the name suggests: it affects your ability to think, your ability to speak (quite often you can’t find the right word) and that got so bad after cycle 3 that I felt I was almost no longer myself. I would have been quite unable to do anything that required thinking on my feet, such as a programme pitch to Radio 4.  And it left me unable to do anything creative, even drawing. Only the most routine tasks were still within my grasp.

But the worst thing is that it affects your personality. I would almost say it affects your soul, in the sense that you feel removed from everything. You cease to care. And it’s a frightening thing when you no longer care about the things that you normally feel  passionate about.

For me, that’s most of all my husband and my faith. Of course I still do care for David,  but it’s a question of “can I be bothered”: to engage, to be loving, to do things for him and reach out to him, when his own illness means that he can do so little, and so much needs those things from me.

There were a few days when I found that really hard, and that scares me. I also found it hard to pray, barely going through the motions, and feeling cut off from the source of all being by that terrible brain fog.

I don’t want to be like that. And that’s convinced me that after the six chemo cycles I’m having at the moment, I don’t ever want chemotherapy again. I would certainly consider it very carefully. Because I’d so much rather have a shorter life and be me, be lovingly and passionately me, than living in that terrible state of not being really there, with the light so dimmed that I’m no longer what I most want to be.

10 It’s not fair

Early on after my diagnosis, for the first time in my life, I was clear that I wanted to find a spiritual director – someone with whom to discuss my illness, and David’s, from a faith perspective. My first approach was to a hospital chaplain; but although he was both an Anglican priest and a very friendly man sporting a ponytail, my attempts to talk faith with him failed miserably.

So I asked St Joseph’s hospice in Hackney whether they knew of anyone who might be prepared to see me. That’s how I found Sister Hilary – a religious sister who’s turned out to be the best thing that could have happened to me at this point in my life.

In one of our early meetings, she encouraged me to reflect on the end of St John’s gospel where Jesus, now risen from the dead, says to Peter, “When you were younger, you dressed yourself and went where you wanted; but when you are old you will stretch out your hands, and someone else will dress you and lead you where you do not want to go.” Which was understood by Christians at the time, and certainly Peter himself, as an indication that he would suffer a violent death for his faith.  But it also speaks to me as a cancer patient: when I was younger and healthy, I was able to dress and do as I pleased; now, already, I cannot dress as I want (the picc line in my arm, through which the chemo drugs are administered, prevents me from wearing most of my long-sleeved tops, so I have to wrap up in shawls and ponchos) and the cancer leads me where pain and sickness await: biopsy rooms and chemo units.

In John’s gospel, Peter then looks around and sees John, the Lord’s favourite disciple, and asks, “Lord, what about him?” And that gives me pause. It has echoes of something I’ve struggled with for much of my life: a sense that “it’s not fair.” As a child, the world seemed an assault course of unfairness: it’s not fair that others are prettier, more athletic, more confident, more popular than I am. That they are allowed to do things I’m not. And as an adult, I often struggled with a sense of unfairness in the workplace: it’s not fair that this person should get promoted above my head even though she knows far less than I do. It’s not fair that I work harder than someone else, but get less recognition. And so on.

But now, when I might have expected myself to rail against the unfairness of my illness, to protest that it’s not fair that I have breast cancer when others are healthy – now I feel at peace with my lot. More than that – when I see women I love, my friends, my female relatives,  what I think is: thank God it’s me and not you. Because I love you and want you well, and I can carry this illness. So there’s a sense of peace which I would never have anticipated before my cancer diagnosis. It feels like a deep breath of fresh air: at last to be free from “it’s not fair”.

Peter, in John’s gospel, is told not to concern himself with what may happen to John. Rather, Christ says to him, “You must follow me.” And of course that’s what Peter did, and that’s what I want to do. I want to spend the rest of my life following Christ as best I can. And to me that means, loving as best I can, and living that love as best I can.

Am I doing that well? Probably not – but it’s what I begin every day wanting to do. And from that point of view, this passage has really been spoken into my present reality. Thank you, Sister Hilary.