World Cancer Day 2020

To be honest, I’d rather be writing about St Gilbert of Sempringham whose feast-day this is, but I spend so much time responding to people who write to the monastery about cancer, their fears, their experience, and so on, that World Cancer Day seems a more necessary subject.

The theme for this year’s day is ‘I can and I will’, a brisk and bracing one. Tell that to someone vomiting after chemotherapy or sore and bleeding after weeks of radiotherapy and I wager you’ll get a weak smile at best. Good advice is equally hard to take, well-meant though it is. I confess to my shame that I tend to respond with a howl of rage whenever exhorted to fight, told that I can beat this thing or am recommended the superfood of the moment. The truth is, cancer is not very pleasant, nor is its treatment, and only those going through it really understand. It is horrible for those who look after the person who has cancer; it is horrible for those who love them. I myself have managed six years with stage 4 of a rare and aggressive form of cancer, thanks to God’s grace and the skill and determination of those involved in my treatment and care, but I am quite realistic about the outcome. As a friend cheerfully remarked online, ‘There is no stage 5. After stage 4, you die.’

So, all those encouraging reports about improved survival rates, new treatments and so on which we in the West take for granted, are only half the truth. They don’t apply to everyone, and in the developing world, where oncologists are few and treatment possibilities limited, they don’t apply at all.

Today we are encouraged to raise money for research in the hope that we can reduce the incidence of cancer and perhaps find cures for some of the commonest forms. It was unfortunate, therefore, that the first search about World Cancer Day 2020 that I performed with the DuckDuckGo search engine produced a series of results beginning with ‘Cancer Market’, subdivided into UK Cancer Market, US Cancer Market and Canada Cancer Market. There was nothing about the spiritual side of cancer care and precious little about the daily hurdles most cancer patients have to surmount.

It isn’t popular to say so, but I think the spiritual side of cancer care is as important as the more obvious, physical side. Having cancer is a lonely business. There are long hours of questioning and self-doubt, times of infinite weariness, periods when one does not want to admit how much something hurts, when one just wants it all to stop. It is then, of course, that one is brought back to reality by someone else’s need or one is given the grace to laugh at oneself.

The Church offers an abundance of set prayers and blessings for the sick, but nearly all of them seem to expect the sick person to recover. I find it difficult to say ‘Amen’ to such. Would it not be more honest simply to ask the Lord to do what we already know he is doing, accompany the sick person until death? And don’t forget the carers! They have the harder job in many ways. Often they do not get the attention and support they need while the cancer sufferer is alive, and after the death of the patient are left dangling, as it were, with scant interest in them or the weariness and distress they have experienced. Being exhorted to have more faith is entirely wrong, in my view.

Faith does not take away all doubt nor does it remove all fear, but for the cancer sufferer it enables us to go on — not gloriously perhaps, but at least we go on. I used to hope I might limp into eternity. These days I suspect I’m more likely to waddle there. I don’t mind. It doesn’t depend on me, and I am content. ‘I can and I will?’ No. He can, and He will.

Personal Note
The treatment I was having with Trabectedin has now ceased because it is no longer working. There aren’t many options for metastatic leiomyosarcoma but the sarcoma team at the Churchill are exploring whatever might be available. Please don’t send sympathy — it is not my style and makes me feel awkward. Prayer is what matters, and especially for those who are younger than I am and face amputations, etc. and for the carers for whom it can be so hard. Thank you.


The Extraordinariness of the Ordinary

Today we return to the liturgy’s Ordinary Time. That has always seemed to me something of a misnomer. To anyone who lives in a monastery the ordinary is really extraordinary, every moment of every day freighted with meaning and grace, leading us deeper and deeper into the paschal mystery. Even the words we say again and again or the gestures we routinely perform are transformed into runways into God. A deep bow during the gloria at the end of every psalm reconnects us with our creatureliness as we face the ground, then raises us to our new identity as ‘sons in the Son’ as we stand erect. And to those of us who are, so to say, ‘brands snatched from the burning’, the sense of the preciousness of the ordinary can never be extinguished. The raindrop on the window pane, the weed growing through the asphalt, the feel of the sun or wind on our cheek, these are ordinary things, but they are miracles, too.

A personal thanksgiving
Most of us like to mark anniversaries and the passage of time. Today I have a very personal reason for giving thanks. Six years ago today a letter was sent confirming a diagnosis of metastatic leiomyosarcoma. The cancer had spread to my lungs (already scarred with sarcoidosis), my liver, my hip and various other parts of me. The outlook was not encouraging. I thank God, the many, many people who pray for me, and all those who have worked hard and long to keep me alive — especially when I’ve found things a bit tough and haven’t been my nicest, kindest or sunniest self. I hope my experience will encourage others not to assume the worst when they receive a shattering diagnosis; and to treasure every moment of life as a gift. I know my own life could end at any minute but, as a Benedictine, I take to heart the Rule’s exhortation to ‘keep death daily before one’s eyes’, not as a threat but as an invitation to make the best of things, serving God and others as well as I can, and joyfully, too. Laus Deo.


Faith and Cancer

Most people who read this blog know that I have a rare and aggressive cancer that is deemed incurable: metastatic leiomyosarcoma. I’ve never hidden the fact. Equally, I’ve tried to avoid the ‘My Cancer and Me’ narrative that seems to be increasingly popular but which I often find profoundly irritating. The truth is, cancer is a bore. It’s lonely, painful and sometimes frightening. If, like me, one has survived longer than predicted, one can even feel slightly guilty because of all the good and kind people who haven’t. Of course, one knows that the situation could change overnight, but one can’t live on a cliff-edge all the time; so one just gets on with life as best one can. In that context there are a couple of questions that often arise and which may be worth my trying to answer for the sake of others who face them.

The first has its humorous element. I am sometimes asked if I have lost all my hair, which is then swiftly followed by, ‘But it won’t matter to you because you’re a nun.’ As it happens, I haven’t lost all my hair, only some of it, but the assumption that it doesn’t matter is wide of the mark. I really don’t like digging out clumps of hair from my hairbrush, and being thin on top has distinct disadvantages when wearing a veil. Should I be indifferent to these things because I am a nun? The sun scorches my head just as much as it scorches anyone else’s!

The second is more complex. I am often told, ‘It’s OK for you. You have faith.’ Or, if my interlocutor is more subtle, the point is framed as a question, ‘Does your faith help you deal with cancer?’ I am not sure what answer to give. Yes, I believe, but because I’m a Catholic, I believe in the possibility not only of eternal salvation but also of eternal damnation; so my faith is as much of a challenge as it is a comfort. Cancer doesn’t exempt one from the need to be virtuous, nor does it excuse (though it may sometimes explain) conduct unworthy of a Christian. It is said that the closer one gets to God, the more one becomes aware of the enormity of sin. All I know is that sin is real, and although monastic life presents one with many opportunities to grow in holiness, one can reject them. The sins of missed opportunities may not look to the outsider to amount to very much but to the perpetrator they can be huge.

I think, however, that what my questioners are really asking about is not eschatology but the here and now. Does having faith help one cope with the business of having cancer — the endless hospital appointments, treatments that make one sick or weak, the inability to do things one once did easily, the terrors that can come in the middle of the night? Some people seem to manage these without difficulty. I don’t. I don’t have the kind of faith that wears a permanent smile. I have been given the faith of the plodder instead, and I confess that at times it is that of a grumpy plodder. Somehow, and I must admit I don’t always know how, I get up each day and begin again. I do not progress from triumph to triumph but crawl from one little disaster to the next. In a way, I think that is immensely liberating. Too many people expect those of us living with cancer to be defiant. If we are not hang-gliding or ticking items off on a bucket-list of things to do before we die, we have failed. I have no bucket-list, no desire to cram in ‘one last experience,’ and I suspect many feel the same way.

That makes me think the question of faith is being looked at the wrong way round. Wouldn’t it be better to ask, does cancer help one’s faith? There I feel on surer ground, because one thing cancer undoubtedly does is to simplify one’s life. The fact that one cannot do all that one used to do, that one’s planning goes from long-term to (very) short-term, that one knows there is nothing one can do of oneself to stop the cancer growing inside, changes everything. One realises how much of one’s daily life has been a living in the future rather than the present, yet it is only in the present that one can encounter God. To be stripped of one’s defences in such a thorough-going way is painful, but it is also salutary. One re-evaluates everything, and from that re-evaluation comes, I think, a renewed sense of wonder — not all the time, of course, it is difficult to wonder when one is being sick or unable to breathe or move freely — and, hopefully, a deeper compassion for others. ‘There but for the grace of God go I’ must be one of the most misused sentences in all scripture but when its meaning finally pierces one’s heart, one cannot but pray. And prayer is the secret of growing in faith, hope and love.

Today is the 224th anniversary of the Carmelite Martyrs of Compiègne with whom the Benedictine nuns of Cambrai shared a prison. There must have been dark and lonely hours for all of them but today we remember only their faith and their courage. It wasn’t the kind of faith nurtured by cancer but one which was nourished by being true to what they had professed. Their courage was sheer gift, but let us hope we may be given the same gift if and when we need it. Let us ask their prayers for all whose faith is faltering, for those who face new and difficult challenges, and those in their last agony — especially, please, those who have come to the end of their cancer pilgrimage, and for those who love them.Facebooktwitterredditpinterestlinkedintumblrmail

When Someone With Cancer Doesn’t Die

Forgive me if this seems an insensitive post in the light of the tragic events in Las Vegas and so many deaths by terrorism in Europe and the Middle East, but I have been thinking about it for a while and hope it may prove helpful to those in the same situation I am, viz living with an incurable cancer.

A few weeks ago someone I don’t really know, but who obviously thinks they know me, wrote a rather curious email more or less accusing me of exaggerating my illness (metastatic leiomyosarcoma). At first, I brushed it aside. Then I found myself mentally replying with a long and circumstantial account of how the disease has progressed, admitting that while the initial prognosis was pretty grim (it had already spread to the lungs and liver), I had survived longer than expected and hoped to survive for longer still.* As all this was going round and round my head in the small hours, I asked myself why I was so defensive. Why did I feel it necessary to justify myself in any way? Did I feel guilty for not having died when I ‘should’ have done? Was it (partial) survivor guilt at work?

A psychologist would probably answer differently, but I think it has something to do with the rhetoric with which we customarily surround cancer. Any diagnosis of cancer is devastating, not only to the one who receives it but also to those closest to them, and I think we can make it harder for ourselves by the way we talk about it. We use words without thinking and forget that what has a precise meaning in medical circles may carry a different weight outside. Thus, I prefer ‘incurable’ to ‘terminal’ because the latter suggests that the person is being written off, not that the disease is . . . not going to be cured. Most oncologists are wise enough to say that although they can make an educated guess at likely times and outcomes, particularly for such dreadful cancers as pancreatic cancer which is often diagnosed very late, they are always being surprised by their patients — and no one is more delighted than they when someone manages to live longer and more happily than might have been expected. No one wants to raise false hopes (oncologists), but then again, no one wants to be cast into a pit of despair because everything seems bleak (patients).

I wonder, too, whether part of my own defensiveness stemmed from what I call the unseen battleground of cancer — the only battleground I’ll admit, because I am emphatic that I do not fight my illness, I live with it. Everyone with cancer will know that there are times when pain, weariness, ‘chemmie brain’ and worry about others — especially worry about others — fill one’s mental universe. One can’t think straight; one can’t pray straight; one just plods on. It is impossible to describe to anyone who has not experienced these things just how all-encompassing they are. I am fortunate that when I surface from the nausea and tiredness of my present chemotherapy regime, I have a few days in which I feel almost normal; but not everyone does. For some, the weakness and sickness never go away. It is not that one is ‘more’ ill than another but that our bodies respond differently, our minds too, and there isn’t very much any of us can do about it. All the positive thinking in the world will not change the reality of the situation in which we find ourselves. The single essential thing to grasp about cancer, I would say, is that we are not in control. As a Christian, I don’t find that either surprising or depressing; but for some people it is. Their whole life is built on the principle of aseity, that they are in control; and when that is manifestly not true, all kinds of complicated feelings and emotions can take hold. Guilt is just one of them.

If you who are reading this have cancer, I hope you will find some encouragement that the contradictory thoughts and feelings you experience are perfectly normal, that there is no one way of having cancer and certainly no right way of dealing with it. It is O.K. to feel angry/sorry for yourself — though I would suggest that that is not likely to help you live with your disease. Personally, I find that just getting on with things suits my temperament. I don’t have to pretend to be heroic (I’m not), nor do I have to bolster myself with unrealistic expectations. I do what I can and try not to fuss too much about what I can’t. I suspect I’ll always be sensitive to the suggestion that I am exaggerating my illness because I know that others are suffering much more than I am. That, however, is not really a consequence of having cancer but of the competitive nature of Western society. We tend to compare ourselves with others, often unconsciously, and we all know how useless that is. I think, in the end, I was grateful to my correspondent for forcing me to think about things I might never otherwise have considered. I’m sure you’ll be glad to know that my midnight musings on how to answer them ended with the thought that I could always have these words carved on my gravestone: I told you I was ill! 🙂

*If one has a rare form of cancer, such as sarcoma, there is the disadvantage that there is comparatively little written about the disease, and such studies as are readable by the layperson tend to be based on very small sample pools with depressingly negative outcomes. One can depress oneself very quickly by reading them.  See, however, the excellent work done by to inform and encourage sarcoma patients and their families.Facebooktwitterredditpinterestlinkedintumblrmail

Pain: the Price of Compassion

Recently I’ve read a number of articles suggesting that it is ‘scandalous’ this or that cancer drug is not being made available on the NHS, or that it is somehow morally wrong that not more is being spent on research into a particular cancer. Of course it is sad when someone we know and love has a deadly disease and we can do nothing to alleviate their suffering; but we have to recognize that cancer is not the only life-threatening disease, its treatment is very expensive, and the NHS cannot afford everything that might be possible without cutting back on other, equally important, treatments. But there is another aspect to this question that isn’t often addressed. We have a problem with pain.

Many people seem to think that there is something wrong with pain. We should not have to experience it. It is unnecessary, degrading. I agree that pain is not, in itself, desirable or ennobling, but I would argue that it is part and parcel of being human and, as such, unless deliberately inflicted by one person on another, can never be degrading. To me, it seems perfectly acceptable to alleviate pain with whatever helps medical science can provide, but get rid of it altogether? I doubt whether that would be possible, even in the case of physical pain. As for emotional pain, who could avoid that without becoming an unfeeling monster?

Often it is not the pain we feel ourselves but the pain of someone we love that troubles us. Much of the so-called ‘assisted dying’ debate has centred on the horror of watching a loved one suffer and wanting to spare them (and ourselves) that pain. I am beginning to wonder whether that apparently very laudable aim doesn’t have within it the seeds of something much less praiseworthy: the desire to control life and death according to our own notions of what is right or wrong. The Catholic Church is very clear in her teaching that extraordinary means do not have to be used to keep someone alive. She is equally clear that we do not have the right to deny life to the unborn, the disabled, the elderly, those society does not value (e.g. girls in certain countries of the world; those whose ethnic or religious identity is shunned). That is a tough teaching, but its toughness does not make it any less true— and there’s the rub.

Many people dismiss the Catholic Church’s teaching on life-death issues simply because it is the teaching of the Catholic Church. Although I myself could put up a ‘religious’ argument for the acceptance of pain in our lives, I would prefer to argue my case on the grounds of our shared humanity. It is human to experience pain, both physical and emotional; and experiencing pain teaches us, quite literally, the meaning of compassion. It is a price I, for one, am willing to pay.

In case anyone thinks I am unaffected by these questions, it may be worth mentioning I have metastatic leiomyosarcoma, which the UK Sarcoma site, with classic British understatement, describes as

widely regarded as an ‘orphan’ cancer, which means that it has few relationships with other more common cancers. It is also a rare disease and thus active research into new treatments is not always seen as a priority by many in the scientific or pharmaceutical world.

The chemotherapy drug I have been treated with for the last six months is no longer funded by the Cancer Drugs Fund.Facebooktwitterredditpinterestlinkedintumblrmail

The Big C

The news that the chances of developing breast cancer have gone up for women may have caused some concern this morning. As it happens, nuns are statistically more at risk than most other groups of women, although, by and large, we don’t don’t share the lifestyle choices that increase the risk (e.g. heavy drinking). I mention this because I wouldn’t want anyone reading what follows to think, “Oh, it’s all right for them. They don’t stand much chance of suffering from it.”

There are other illnesses that are just as life-threatening, but there is something about cancer that scares us mightily. Even if we have not experienced it personally, we all know people who have and are aware of the indignities and humiliations that cancer can inflict. In such situations, the conventional offerings of religion can sound hollow and false. As with any grief (and we do grieve when our bodies or the bodies of those we love are assailed with cancer), there is a part that religion cannot reach, the numb part at the centre of it all. That is why prayer for the sick is so important. We do not pray for them to get better, though that is certainly legitimate, we pray the prayer the sick cannot make for themselves. That is what praying for the sick means. Maybe this Friday we could pray especially for all those diagnosed with breast cancer and not sure how to cope, for their families and friends. It will not be easy, but nothing worthwhile ever is.Facebooktwitterredditpinterestlinkedintumblrmail