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.


Pausing for Breath

It is something I have to do more often these days when confronted with a flight of stairs or a steep slope (I have sarcoidosis, which means my lungs don’t work as well as they should). At first, I was irate. Why would my lungs no longer obey me? Why should I have to huff and puff and come to an ignominious stop every now and then? I found a dozen different ways of pretending I was stopping to admire something or other (a bit unconvincing half-way up a flight of office stairs). Finally I decided to be honest and just admit that I needed to pause for breath. Now I let people rush past or stare at me wondering whether to offer help and don’t feel embarrassed. Pausing for breath has taught me to take nothing for granted; to wonder at the simple act of breathing; to find joy in the ability of others to run and jump and do all the things I can’t. In an odd kind of way, I think pausing for breath has helped me grow up a little. What has helped you?