Indifference and Advent

Yesterday Sarcoma UK published its report on the current state of this cancer in the UK. You can read it for yourself here: https://sarcoma.org.uk/news-events/loneliest-cancer. It is not sensationalist, nor does it whinge about lack of interest or funding, but it does explain why the charity has chosen to call sarcoma ‘The Loneliest Cancer’. I have a personal interest because I myself have metastatic leiomyosarcoma and know, from the inside as it were, what it feels like and how it affects one. This is not, however, a post about sarcoma as such, nor is it yet another contribution to the ‘my cancer and me’ genre. It is about indifference, and I am using the Sarcoma UK report as an illustration because I think it touches on a bigger question: what we do during Advent.

My Facebook followers have responded to my post about the charity’s report with their usual generosity and kindness, so have many of those who follow me on Twitter; but when, yesterday evening, I looked at the number of people who had noticed Sarcoma UK’s original twitter announcement or its subsequent repeats, I realised what an uphill struggle it will be to engage people’s interest. Can you imagine any other cancer charity’s ‘likes’ and retweets’ being for the most part in single figures/low twenties regarding such an important announcement ? True, we have an election coming on, and Black Friday deals always seem to appeal to the acquisitive in us, and there are a thousand and one other things clamouring for attention, but even those who proclaim a burning interest in health matters and the future of the NHS seem disinclined to press the ‘retweet’ button. Perhaps it will gain momentum as days pass. It certainly won’t be for any want of effort on the part of Sarcoma UK, nor for any lack of professionalism.

What does this apparent indifference say about the way in which we react to situations that do not make an impact on us personally? I’m confident that anyone affected by sarcoma, even at one remove by way of a family member or friend, will have some interest in the subject. I am equally sure that no one, confronted by a sick person in the flesh, would want to do anything other than be as considerate as possible. But some causes make no appeal to the imagination, do they, and perhaps this is one of them, or maybe it is just a case of sheer ignorance. Many years ago, when my sister organized special events for the Great Ormond Street Children’s Hospital Appeal, she remarked that sick children were probably the easiest of all causes for which to raise money. Others were much harder to win support for and had fewer ‘feel good’ factors, especially if they ran contrary to society’s current obsessions or were beyond the ken of most folk. 

During Advent, most of us will be thinking about almsgiving and giving time or money to good causes. We all have our favourites, but perhaps this year we could do a little more exploring. Instead of automatically supporting X or Y, we might think who really needs help urgently. There are literally hundreds of charities run on a shoe-string that support causes we may never have heard of, or that supply a need we did not know existed. It would be good if we could each find one that we judge worthy of support and do what we can to show we are not indifferent, and never can be, because of love for our Saviour. That would make our Advent special, and perhaps transform the lives of others. It would assuredly transform our own.

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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 sarcoma.org.uk to inform and encourage sarcoma patients and their families.Facebooktwitterredditpinterestlinkedintumblrmail

Living with Sarcoidosis and Sarcoma

A few days ago a friend greeted me with a cheery, ‘You’re looking well!’ I smiled and waved a vague hand in reply since I was, at the time, so breathless I couldn’t speak. The good side of sarcoidosis is that the disease tends to give one a high colour, and the industrial quantities of prednisolone one chomps one’s way through lead to what is most charitably described as a ‘comfortable shape’ or, more accurately, make one fat and flabby. These two things are a world away from what most people identify with cancer. So, when people hear I also have metastatic leiomyosarcoma, they are often embarrassed, asking what my prognosis is, with frequent well-intentioned mumbles about palliative care and the like. My stock answer, ‘Who knows, the statistics are not encouraging but I’ve done better than I expected,’ does nothing to put them at their ease. O cruel Digitalnun!

Sarcoidosis and sarcoma are both rare diseases that wreck havoc with one’s immune system and various other parts of one’s body. The first was probably triggered by my working with some rather doubtful chemicals and not helped by living in a damp and mouldy environment for some years; but it isn’t usually deadly, and one learns to adapt to having no puff. Sarcoma, by contrast, is a nasty, sneaky beast. Neither I nor my oncologists know what caused it. There had been eighteen months of intense pain and increasingly bad temper before I was correctly diagnosed. There followed two surgeries, several weeks of radiotherapy, six months of chemotherapy, more radiotherapy and now, for a few blissful weeks, nothing in particular while I’ve been dealing with a flare-up of the sarcoidoisis and an infection. There are times I almost forget I’m ill. In fact, I don’t really think of myself as ‘ill’ at all.

You notice I called this blog post ‘Living with Sarcoidosis and Sarcoma’; and that’s exactly the point I want to emphasize. Neither sarcoidosis nor sarcoma interests me very much: I live with them, as I live with having blue eyes and brown hair. They are just part of me. There are millions of people with truly horrible diseases and chronic illnesses whose experience is much worse than mine. I have the advantage of having two that don’t isolate me from others or make me, at present anyway, physically repulsive to deal with. I am receiving excellent treatment from the Churchill Hospital in Oxford and from our local Macmillan nurses. The monastery doesn’t have to fund the drugs I take or the PET scans and other investigations which chart the progression of the disease. My illness doesn’t define me, and when I die, I won’t have ‘lost my battle with cancer’ or anything else. I haven’t the energy I used to have and my mobility isn’t what it was, but what is the point of the comparison? I am older than I was yesterday, and I’ll be older still tomorrow. Isn’t it part of aging gradually to become less able than one was?

There is also an advantage to having a sarcoma diagnosis that few may be prepared to acknowledge: one knows one is going to die. Death is no longer something vaguely ‘out there’; it is a seed one carries within, and one can feel it growing and stretching inside. I am trying to prepare for my own death, and because I am always behind with everything, I’m grateful that it hasn’t happened as quickly as I expected. My friends know what is important to me and are graciously giving me time and space rather than crowding round with their desire to say goodbye or whatever. I appreciate that, just as I appreciate my community’s determination to make life go on as normal and all the people, many of them personally unknown to me, who have been praying for me and those involved in my care. It gives one a great sense of what the communion of saints is, here and now; and for me that is a huge plus. It is something I might never have known had I not become ill.

A good death is like a good life. It doesn’t just happen. It has to be made; and because it has to be made while we are still alive, it helps us to see dying as part of life, a part of living. One of the great graces of monastic profession is that it situates the whole of our lives in the context of the Paschal Mystery. We are taken up into Christ’s death and hope to share in his resurrection. Everything has meaning. Unfortunately, it doesn’t follow that we can explain everything, nor do we necessarily understand. ‘We walk by faith, not by sight.’ That is very much how I understand living with a deadly disease, whether it be cancer or something else. It is harder on those who do not themselves have the disease; who can only watch, wait and suffer. They are the true heroes, the ones who genuinely do battle, and for them the end is always tinged with an element of defeat because they do not always see the enormity of their triumph in helping another to die well.

If you have read this far, I hope you will pray for all those who are in such a position, accompanying someone who is dying; also those who know they are dying but are afraid, or whose lives are suffused with a sense of loss and anxiety for the future of their families. They need our prayers. As for me, I’m blessed; I know it, and I’m profoundly grateful.Facebooktwitterredditpinterestlinkedintumblrmail