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.

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64 thoughts on “When Someone With Cancer Doesn’t Die”

  1. Bless you Sister. As usual I am moved by your honesty,humility and faith. Thank you for sharing so much of your life with us, and gently showing us the way to live our lives. With my love and prayers,
    Maggi ❤️

  2. Thankyou for this. I have Hodgkins Lymphoma that was not discovered until late, because symptoms were overlooked by doctors. I did almost die, and would have accepted that gladly. I had no fear of death – only joy at the thoughts of going “home.” But I survived, blind, unable to walk so now wheelchair bound, with peripheral polyneuropathy which means that there is little to no feeling in my hands an feet and legs, which hampers me as a blind person. I make little of my illness or my state, though I suffer pain, weakness, exhaustion, and various other things. Like you, I just get on with it. No one knows how ill I actually am. I am luvely, outgoing, and caring of others. But sometimes, just sometimes, I want to cry and sometimes, just sometimes, I long to be comforted and allowed not to be bright and cheerful, seeing the glass as half full all the time. Blessings to you Sister. We go on.

  3. I am interested in your difference between incurable and terminal. I am incurable (cerebral palsy and wheelchair user) and yes one could say terminal in the sense that this life is short. There are many things in this life that I have not nor ever will be able to do but I hold on to the hope that in the next life all these things will be resolved. In the meantime, not always successfully, I will battle on and enjoy my abilities. I also wish people would not call me brave as there is a big difference between bravery and just getting on with what life has thrown at you.

  4. My son-in-law lived through nine years of coping with cardiac cancer, so rare it is off the scale. His courage and determination to see his children grow up were an inspiration and nothing that can happen to me can compare with what he went through. He didn’t get to see his wonderful boys grow up, God called him away when they were still very young. It was a privilege to help with his care, especially in the last seven weeks of his life. What a blessing he was to our family. Sister I know what you are going through and I thank you for writing about your life and I just wish that people would not be so cruel and unthinking in what they say at times. God bless you and I hope He allows you to live for some time yet. Peace, love and blessings.

  5. When friends are diagnosed with cancer I hope they will carry on living with it for as long as they have quality of life. If life is reduced to pain I hope they will die quickly and peacefully. Two friends have recently died – one who lived with lung cancer for over three years, and another who had pancreatic cancer for just twelve weeks. Cancer is an umbrella term – different cancers vary greatly. When my hisband was diagnosed with prostate cancer last year we were told it was curable, then incurable, then probably curable, then probably incurable. Finally they decided it was possibly cura le and performed surgery, but who knows?

  6. Bless you I had breast cancer I did feel at times guilty about surviving. I still have chemo brain. When had cancer didn’t believe in God but since have become a christian which is important to me. Can I pray for you?

  7. “But sometimes, just sometimes, I want to cry and sometimes, just sometimes, I long to be comforted ”

    “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? ”

    This post really moved me and your words are profound. It makes me see something. I see Peter, walking on water, and am reminded, Don’t look down! That is important. No matter what comes to just keep our eyes on Jesus. Not to look down, into the earthly situation. I know this is difficult but that is what you are doing. It is a beautiful thing.

  8. You are the second virtual friend I have had with this type of cancer. I was already fairly well versed in the disease before it afflicted you. This is a wonderful post. I’m truly sorry some troubled insensitive soul bothered you with their opinions.

    As always you are both my prayers. Hugs if am allowed to hug a nun!

  9. What a very perceptive and sensitive article Sister C.I for one can see how God has used your illness for His greater glory(which is what the Christian faith is all about).You have been so honest and humble in your sufferings,always saying it “as it is” ,and not rambling on……I admire the way that you “live with cancer” ,as I have never really understood the concept of “fighting”it,seeing that it has all to do with our DNA.I hope and pray that you will be spared to deliver to us more of your experiences ,with through it all ,that supreme confidence of a loving heavenly father who works in all things (even cancer) for our good Romans 8;28.

  10. As a spouse of someone who struggles with addiction (which can be managed but is also incurable) much of what you wrote resonated with me. The illusion of control, the inability to think straight or pray some days and the value of just getting on with things are all things I too experience in my circumstances. It makes me dizzy to think of how many people are dealing with situations that are also out of their control- chronic poverty, natural disasters, illness, addiction, war, injustice. I’m sure that they too like me could also use a hug and understanding when they are feeling hopeless. Kindness seems like such a simple thing but it can be so powerful.

    • I hoped my post would have a wider application than the narrowness of its apparent focus might suggest, but I am sorry that you have to deal with such problems and will keep you both in my prayers. I know that is easy to say, but I do believe that prayer often achieves more than we realise or are prepared to admit.

  11. It seems like you were talking about me, about my experience. I’ve learnt though this post of yours a crucial lesson to me that I have been exaggerating when I am talking about living by faith in God. I have learnt a lot in the above life experience of yours fighting with cancer.

  12. A haunting reflection Sister. I wept being reminded of my husband’s struggle with Ampullary cancer. I wish you well on your journey. God bless and keep you in His loving embrace

  13. I’m so glad that you wrote this. Your willingness to share honest musings is always humbling. I do think that Christian faith (perhaps other faiths too?) helps enormously towards an acceptance that we are not in control. (‘Relax, nothing is under control’ is a saying which first shocked, then challenged, and now rather comforts me.)
    Your preferred description of your illness as ‘incurable’ rather than ‘terminal’ is very striking, and one which I will gladly adopt if I may in talking and thinking about such things. We are, after all, alive until we are not. The sparrow’s flight through the hall might be short or long, but she may sing on her way just the same.
    Prayers for you and yours, as always.

  14. Thank you for this. I’ve been living with a rare blood cancer for many years. As faithful Catholic I have no fear of death but endlessly fret about what I know are trivia namely housework and ‘getting things done’. As I am not on chemotherapy and have no lumps and bumps the reactions of others have varied from ‘suspecting’ I have AIDS to suspicion that I’m ‘making it up’. And the constant need to apologise! It wasn’t until I lost an alarming amount of weight that it was finally accepted that my not being able to do things might have legitimacy. I’m not sorry for myself, I know what Jesus went through with doubters but my goodness it’s hard. May God Bless You. Safe journey Home.

    • That’s very hard. I pray you have a less hard time in the future. Far from losing weight, I have amassed many unwanted kilos because of all the prednisolone I have chomped my way through. It’s a pity I can’t lend you some of my excess . . .

  15. Thanks Sister-a thoughtful and reflective post. Made me grateful for all those things in my life I take for granted every day, family, my health, my work…as someone who has anxiety about anything and everything the comment “…I do what I can and try not to fuss too much about what I can’t…” was a good way to start the day!

    And thank you for introducing me to a new word ‘aseity’. I so want to be in control of everything and yet….

    All the best

  16. Thank you for talking about your illness in an honest and open way, and blending your faith perspective with it. I have several friends living with “incurable” cancer, addiction etc. I am glad you have opened this conversation. This frankness strengthens the bonds of and strength of prayer and provides hope.

  17. I am going to pray for you. I will say a rosary and will go to Mass tomorrow especially for YOU and the Bro. You have to plan on staying around because the Bro needs you (I among others, need your grace, too)

  18. Many thanks for this post and many thanks to your followers for their stirring comments. I have been moved by you all. You are all in my thoughts and prayers.

  19. Dear Sister, don’t know how your post arrived with me but I’m so pleased I did. My husband has cancer and other people’s well- meaning reactions are sometimes not easy especially when the cancer has gone on for some time. Close family and friends are ok but when less close friends enquire I have taken to being upbeat because I don’t find their sympathetic hushed tone when asking after him very helpful! Especially when the prognosis time-wise is unknown. I suppose it is unlikely most people will understand the nuances of the illness, with all the variations of pain , fatigue, etc.with ‘good days ‘ and ‘bad days’ .Please pray for us, it is our wedding anniversary on Oct 5th. God bless you.

    • I will keep you both in my prayers, especially on 5 October! I think some people experience ‘compassion fatigue’ very quickly and don’t know how to handle an on-going situation with its ups and downs and, above all, its unknowns. When people are a bit unctuous with me, I tend to reply briskly, ‘That’s life.’ Coping with one’s own emotions is bad enough; being expected to deal with other people’s can be worse; and I think your position as wife and carer is the most difficult of all.

  20. Thank you for such a moving and enlightening post. It seems to me that while we live this incarnate life we have no choice but to live in the dimension of time and, for me, this can lead to a panicky sense of it all slipping by too quickly without ever being ‘held’ in the moment (especially during illness or other suffering). From the perspective of eternal life with God we are walking this particular path and it makes no odds, ultimately, whether we run it in 5 minutes or dawdle along for hours…although like most people I’d like the option of meandering about looking at the flowers and playing with the dogs on the way! My hope is that once we return ‘home’ with Christ the life we have had will suddenly make sense and we will be caught up in the joy of ‘timeless’ life with him.

    • Yes. I’m afraid there are days when the prospect of eternal life is less immediately inviting than others, but Christian hope does sustain one, even when one is not aware of it — so, I am convinced, do the prayers of our ‘even Christians’, the Communion of Saints here and now. Bless you!

  21. I can’t help crying when I read the bit of just plodding on .
    I was diagnosed with a rare leukaemia as a young mum and given possibly 3 years . I plodded on as a clinical trial for 25 years ! I was a young Christian too , when diagnosed and knew about the woman who pushed through the crowd , to touch Jesus . I decided I was just going to hang on to Him !
    Then a new drug was being trialed and here I am 8 years
    later whole and healthy .
    But I so remember the constant exhaustion and I feel that nobody , absolutely nobody should make judgements ,
    unless they have walked in your shoes .
    Bless you , Sister Catherine and keep going with your hand in His .x

  22. Thank you, as others have said, for your honesty and vulnerability, which are blessings. Much prayer has been generated by your blog too! It was worth the risk…

  23. Dear Sister Catherine, you are an inspiration to so many people. The many responses of sympathy for your predicament are a sure reflection that, as you suffer, care and pray for us sinners, our Lord has given you to remind us that love and kindness for each other are the most important things.
    Your suffering informs us all that there is more to daily life than the banal, inane and selfishness which drive so much in people. Too many people know the price but not the value of life.
    I pray for relief for you from pain, nausea and the fatigue of malaise and that you live for many years to come as comfortable a life as possible in the light of your illness. May God continue to bless and care for you and for everyone else affected by illness, poverty, disability or despair. Peace and love be with you now and evermore, xx.

  24. I really like the idea that cancer lives with me rather than I live with cancer.

    Thanks for the comments about terminal rather than incurable. I’ll have to think of how that would work in a conversation.

  25. Thank you thank you thank you! I haven’t died yet of brain cancer. Three plus years past initial diagnosis and I have finally read an essay that expresses what I could not articulate to family and friends. I’m grateful and feel blessed for every day I wake up. Now I can share your essay with those walking on eggshells in my life. There is a basic truth in your words – you have loved others and loved yourself through your sacrifice and burden. I’m so very proud of you. Keep fighting the good fight and run the race of endurance. I will pray for you!

  26. I read your post, but not the large number of comments, so apologies if I am repeating setiments already expressed.

    Firstly, I’m cross on your behalf. How dare anyone tell you anything about your own illness? How tactless to set out words that made someone else feel that way! (How do you manage not to lob the computer out the window at times? 🙂 )

    Then, secondly, I have an aunt with cancer who is 2 or 3 years past (what we call) her ‘use by date’. They even held a living funeral for her ( why say the nice eulogies when their dead, if you can say them to their face is, I think, the idea). I believe she has a lot to live for, as main carer to two grandchildren, so she keeps going. I believe she has a good quality of life, but I suspect she also fights to make sure that is what we see. Living with incurable cancer is a much more positive sentiment than the idea of dying of terminal cancer. I’ll share it with her, as I know it’s one she’ll appreciate.

    • I’ll keep your aunt in my prayers. I find quite a lot of people tell me about my illness, as it happens — probably because everyone has been affected by cancer to some degree or other — but usually, in my case, it is water off a duck’s back.

  27. An amazing number of responses to your post (a record?) which, I am sure, illustrates just how many people read your words carefully and are moved and inspired by them.

    I was particularly moved by your refusal to battle – rather to live with cancer. I am always uncomfortable when I hear people say that a person lost the battle. A close friend died of cancer and I could never accept that this was in any way a failure. He suffered, had good days, shook hisn fist at the heavens in rage, laughed and still loved his family and friends. Faced with an incurable diagnosis where was there any failure/defeat? Thanks for shining a sensible, comforting light into an area often darkened by taboo or well-meaning but clumsy platitudes.
    Said a prayer for you this morning and all who have posted – no need to scrounge.

    • Thank you, Joseph, especially for your prayers. I bristle when anyone talks about ‘fighting’ cancer, and particularly loathe the expression ‘lost their battle with cancer’. There is no war; there is no failure or defeat, as you say. It is all part of life.

  28. Thank you Sister Catherine it is wonderful that you can put into such clear words the way you feel. I nearly died of myeloma 4 years ago and am now on permanent chemo and am responding thank God. Without all the prayers said for me and receiving the Eucharist I would have given up the chemo and it is great that you have explained your nausea and tiredness so well. Steroid brain has to be experienced to be believed does it not? You are in my poor prayers now and hopefully I can “scrounge” a couple from you! Sending a holy hug. Maura

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