A Little Further on the Way

I apologize for inflicting another sarcoma-related post on you but sometimes it is the easiest way of updating people.

Yesterday I had a good chat with my oncologist about my latest PET scan. It came as no surprise to learn that three of the metastases in my lungs have grown, one of them noticeably.

Of course, part of me was disappointed at the news. I’d love to have been told that my disease had stabilized, but I knew it hadn’t. When I say I’ll just have to grin and bear it, I’m not being brave. I’m simply trying to find a way of coping with something over which I have no control, don’t fully understand, and wish were not happening at all. But it is happening, and there is no escape. I have always loathed the kind of piety that can lapse into sentimentality or leave someone with guilt feelings because they cannot emulate the model it proposes. I won’t go gentle into that good night, I’m sure of that. I’ll go as I have lived, though I hope there won’t be too much raging on my part — and no going anywhere for a good while yet.

I would like this post to be an encouragement to those of you who are treading a similar path to mine. It may be cancer or a stroke or heart attack or some other illness that you are trying to deal with as best you can. You may have very little time left, or you may have more than you expected (I’ve lasted much longer than anyone thought I would). The pain and limitations of your illness may be wearing you down; you may be anxious about your family/community, or worried because you have no one in particular to help you at a time when you must rely on others. You may have lost hope and feel utterly depressed. Being told that such feelings are probably a side-effect of whatever treatment you are having (or not having) won’t lift the burden from your shoulders, especially not at two in the morning when you are just a sweaty, sleepless bundle of anxiety and fear. The only comfort I can offer is the one I cling to, at least when I can. We are part of the Communion of Saints. Even in our darkest, most difficult moments, we are not alone. 

I think that is why I believe that no matter how bumpy life becomes, our lives are never wasted, never meaningless. Somewhere in the midst of all the contradictions there is love, a love we might never otherwise have known but for our illness.

Love is the unfamiliar Name 
Behind the hands that wove 
The intolerable shirt of flame 
Which human power cannot remove.

There is something else we do well to remember. Those who love us, who deal with us when we are at our weakest and most demanding, who forgive us our grumbles and cantankerousness, not only show us God’s love and forgiveness. They are his love and forgiveness — incarnate, here and now. They are a foretaste of eternity. Let us give thanks for them and pray for them. Truly, theirs is the harder, lonelier, path to tread.

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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.

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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.

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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