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.

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34 thoughts on “Living with Sarcoidosis and Sarcoma”

  1. I thank you for helping me to walk alongside you in your pilgrimage of faith. May Jesus guard us both on our ways that are part of his Way…..

  2. Bless you Snr.C. A wonderfully honest article. You have traveled far on your road of poor health ,and God has surely used you to touch the hearts and lives of many;not only in the testimony of this article ,but all those involved in your treatment and care,be it surgeons or pharmacists,Macmillan nurses or radiographers(I was one once). Bless you for your faithful and steadfast witness;be assured that it was the path God called you to tread…..however hard it be…

  3. Sister, I have been reading your blogs for some time now and like many have felt uplifted by your prayers each day on Twitter world. Reading this blog has left me with the knowledge that God does allow Angels to exist on earth. Given Your modesty you will, in your normal style shy away from you holding such a position but for me there is no doubt, you are an angel. Your place at God’s side is assured, as you have only been loaned to us in this earthly mode.
    I will continue to hold you in my thoughts and prayers and I trust that when God does call you home, that your calling will be peaceful and painless.

  4. You have touched many lives, for the better. So you have led a good life and certainly deserve a good death. I and many others pray it is not soon and is as painless as possible.

  5. PLEASE, people. It’s very kind of you, etc, etc, but I am NO SAINT and certainly NO ANGEL and I am made extremely uncomfortable by the suggestion that I’m anything other than an ordinary sinner in need of prayer myself. I surprised myself by writing thsi post, having recently refused to write about my illness for Sarcoma UK; but we get so many prayer requests from those struggling with terminal illness, either themselves or family members, that I thought it might just help one or two if I shared my own experience.

  6. I find your posts enormously helpful. Please pray for Elaine, who has been living with breast cancer for nearly twenty years but is now very ill. She is tube fed and her kidneys are failing. Also for Gren who has tumours in his lungs and elsewhere. They are both members of St. Michael’s Singers at Coventry Cathedral. We are currently rehearsing Mozart’s Requiem and Solemn Vespers – sadly without their voices!

  7. I hope you will offer this to Sarcoma UK and that they will accept it and present it to a still wider audience. It does not make the spirituality of suffering easy, no dumbing down here, but it does make it a little more accessible and in my experience there’s not much out there that does that.
    As to the difficulties/heroism of caring, I heartily endorse this, but have found that whenever I try to say something similar, people just think I’m being ‘nice’. Friends, I’m not nice and my prayers are for Quietnun.

  8. Thank you, Sister Catherine, for this post.Thinking of you and Sister Lucy and Brother Duncan and appreciating who you are and all you do
    I think the best things about your writing is the honesty you bring to it and your willingness to ‘
    accompany others as we journey through life.

  9. It does really help, thank you. The Community has prayed for my husband many times. And for me. I’m not sure that being the one standing by the person with a terminal, or serious, illness is the hardest road; I simply couldn’t say. But I certainly find it very hard at times and often feel horribly selfish, unsympathetic and impatient. The family joke is that although I’m from a family of nurses, that gene passed me by completely! So I wouldn’t claim to be anything remotely like a hero. I just trudge from day to day doing my best. And giving thanks for the blessings of each day too. It’s important to live and appreciate the time as it flies.

  10. Thanks for sharing. We keep you in our prayer. Pray for our two wonderful women who will make today their final monastic profession in our Congregation here in Norfolk. They are Sr. Fidelis Marie and Sr. Madeleine. Blessings and love, Sr. Pia

  11. You have a refreshing and unsentimental way of saying things, which helps a great deal to put things in perspective.
    I have lost most of my family to various kinds of cancer, and only have a small handful of relatives left. I try to live each day the best way I know how, because I know all too well that nobody is guarenteed a tomorrow.

    This past week the whole country has been collecting huge amounts of money for cancer research. Big companies, small companies, young and old and very many children have found inspiring and creative ways of collecting money. Cancer is a disease that almost all people have been in touch with, one way or another, and the more money we can find for research, the more people can benefit from it.

    I will continue to pray for your community and for all people in need of God’s help.

  12. It does help, it helps enormously, not least the understanding of dying. How hard for most of us to accomplish this. We are swept up by the rush of events, and also by the determination of others ‘you don’t want to think about that’.
    Perhaps we are just not well-‘trained’ to think even about retirement, and death as a refinement of retirement after all; for some it is a vacuum.
    Our prayers accompany you and all those who bring life into death.

  13. Bless you for your sensible & helpful reflections yet again, Sister.
    Your posts have been of great value to me during 18 months of often difficult chemo, and your prayers even more so.
    As I have been through all this, I have found it impossible to pray for myself … but increasingly free to pray for & with others.
    Like you, I find it so difficult to accept the descriptions or narratives that (many) others wish to use of me: brave, inspirational, battling for survival or fighting the evil cancer. These are not me. And as I continue to pray for you, Quietnun & Bro Duncan – and others in similar situations – I will ask for honesty & openness to see things as Our Lord sees them, and then unsentimentally hold Him to his word.

  14. In gratitude for your post, may I offer a hymn text that is one of my favorites?

    We walk by faith, and not by sight;
    No gracious words we hear
    Of him who spoke as none e’er spoke,
    But we believe him near.

    We may not touch his hands and side,
    Nor follow where he trod;
    Yet in his promise we rejoice,
    and cry “My Lord and God!”

    Help then, O Lord, our unbelief,
    And may our faith abound;
    To call on you when you are near,
    And seek where you are found.

    That when our life of faith is done
    In realms of clearer light
    We may behold you as you are
    In full and endless light.

    Henry Alford, 1810-1871, alt.

    (It can be sung to many chant hymn tunes, like “Jesu Dulcis Memoria,” and many well-known “standard” hymn tunes like “O God, Our Help in Ages Past.” It is in CM: Common Meter.)

  15. I love the ‘matter of fact’ way that you portray your situation. I don’t think that I had considered you a Saint or a Victim, rather one who’s compassion for the world and it’s people, whatever they are or whoever they are is demonstrated daily on your blog, and other means that you work through.

    It’s a privilege to share your journey here and perhaps my parish in a show of confidence has taken you off the immediate prayer list and added you to the long term prayer list, prayed for daily by those in our prayer group, and continuing in services.

    I pray for the work of the monastery as well, for Quietnun and @Bro Duncan as they persevere in patience and love to keep you on the straight and narrow 🙂

  16. Having watched my best friend and partner die in all too short a time last year, can only heartily agree with the sentiment of a good death.
    Once Pete received his diagnosis, it was a case of how best to make the most of the time he had left. I think we all played our part and the plan such as it was,accomplished well. When everything on the list was complete, he slipped quietly away. For those of us left behind, it came all too soon, but for him clearly the time was right.
    To die in our sleep is the death I think most of us would prefer ( those who at least admit they will die- too many pretend it won’t happen) and that was how Pete went.
    The grief is still very raw over a year on but there is comfort from knowing that his death was a good one.
    I’m in no rush to die but when I get there I hope mine can be as good as his.
    Thank you for a very honest piece of writing on a subject many are keen to avoid , something I found so frustrating last year when Pete was ill.
    I often read your blogs to Mum when we chat on the phone in the mornings. This one is on the list for Monday’s phone call.

  17. As usual spot on. I live with my illnesses, they don’t define me. I can also relate to the prednisone and all that it does to you mentally and physically. I have been on and off it in large doses since 1979. It is now coating me my eyesight, brittle bones and other side effects beyond the moon face and flabby body.
    You know I pray for you both daily. You are seldom far from my thoughts. I know this cancer a friend died from it eventually. So I am sadly familiar with it.
    I am more or less housebound as you know but my lovely Bishop has granted permission for me to have the Blessed Sacrament in my home so that I can fulfill my longing to adore the Blessed Sacrament since I will never be able to do this in a Church setting.

    I see on FB you are complaining about customer service. I have given up worrying about all these things. None are very important. Life is easier.

  18. All saints say  “I am NO SAINT”; you say  “I am NO SAINT”; therefore you are a SAINT!

    Seriously, what a good, spiritually practical reflection. What I’m taking away in particular is what you say about a good death has to be made, and made while we are still alive. Thank you, Sr Catherine.

    • Hmn to your first sentence! But I’m grateful you got my point, John; and I know you will pray for all the carers and families caught up in this kind of situation — which will make having written it worthwhile. 🙂

  19. “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. ” I will be chewing on these words. Thank you, unheroic, unsaintly, but nevertheless irrepressibly wise lady. 🙂

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