How does it feel to be young and dying?

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ElizabethCAplice

Palliverse welcomes a new contributor today. Elizabeth Caplice is an archivist on hiatus. She has Stage IV colorectal cancer, and writes about cancer, and how it intersects with life, particularly in younger adults. Elizabeth has shared a recent photo, to show that “stage IV cancer looks far broader than just some elderly hands with a cannula in them.” (Try doing a Google image search for “palliative care”.)

We recommend Elizabeth’s excellent blog  Sky Between Branches and her Twitter feed. As always please leave responses in the “Comments” box below.

 

Today, I saw my oncologist, and got dealt more bad news.  Stage IV cancer life is mostly bad news, and you come to expect it.  The cancer has spread, again, after only two weeks off chemotherapy – which I needed to take due to my blood count consistently dropping to dangerous levels.  He gently told me that if it was in my bones now, it wouldn’t be shocking, because I was diagnosed with Stage IV rectal cancer a year and a half ago.  I have done remarkably well. 

I’m 31 years of age, and I do not know if I am ‘terminally’ ill. I know the definitions of what terminal means, exactly, seem to shift somewhat, but my medical care, my surgeries, my chemotherapy, and my radiation is all planned at palliation, rather than curative measures.  I have cancer in my rectum, my liver, and my lungs, and it is clear that my liver will be what kills me, as is the case for most colorectal cancer patients.

One thing that has been difficult for me throughout my treatment process has been the fact that in most of the media around terminal illness – particularly terminal cancer, euthanasia, pain control and palliative care, the only patient voices that are highlighted are high profile terminally ill elderly people.  Oliver Sacks and Clive James have written and been published about this, but when it comes to being a young voice, and for that matter, a young writer who wants to discuss terminal illnesses and palliative care in younger people, there tends to be a lack of interest in publishing these voices and opinions. There are also the more subtle points. I can’t even remember the last article I read on end of life care that didn’t mention ‘elderly’ several times, or that included even a single mention of younger adults and their needs.  Even down to images used on websites – wrinkled hands with cannulas, hospital beds with elderly people.  This is the image of the terminally ill. This is what palliative care is represented as being, while the reality is so much broader.

I wonder if it is partly because it is a confronting thing to read. When we hear of elderly people dying or preparing to die from a terminal illness, it is sad, but it is something we can conceptualise and understand.  When someone speaks unapologetically about their experiences as a young, otherwise healthy person who is receiving palliative treatment, it is either not ‘sexy’ enough, or too hard to see, and too hard to face.  We are told to ‘fight’, and to ‘not give in’ and to ‘keep up hope.’  Hope may be a potent thing for some people, but for me, it sets me up for consistent disappointment.  My disease, with the current treatments available, can be slowed. It cannot be cured. It will most likely kill me within five years of diagnosis.  It has been a year and a half now, and I feel that clock ticking.  But what are the unique needs of palliative care for younger adults? These are things I’ve thought about, and never had a chance to really read about.

In no way do I view my approach as giving up.  I still dream of an immunotherapy becoming available for colorectal cancer, or of a spontaneous remission.  But I know that these are not things that are likely to happen. I know that, most likely, I will die within the next 3-5 years, and I would rather make my treatment and life decisions with that thought in mind, rather than planning on a life that I am most likely not to get. There is a strange disjuncture because I physically feel almost completely normal outside of the day or two around chemotherapy.  I have the occasional twitch of pain, and some days where I am less hungry than others, but aside from that, I am fairly robust.  I do not look ill.  I often do not feel ill. And I am dying.  How does this fit in? Who voices this experience? How do I, as a writer, voice this experience? I grapple with these questions a lot.

I feel like my experiences and views of this are, however, deeply influenced by the blessing I have had in my medical team. I have been remarkably well supported from diagnosis to my present point by my entire medical team – the nurses and doctors, oncologists and GPs and surgeons, the reception staff in the cancer centre I am treated at, the oncology social workers, and my oncology psychiatrist.  This is why I have survived, and I think this is also largely why I am able to take a ‘realistic’ view of things, as morbid as I may sound, and as challenging as it may be.

31 thoughts on “How does it feel to be young and dying?”

  2. Thank you for sharing your insights Elizabeth. You are right – often the imagery and resources that support people living with a life limiting illness make many assumptions about who those people are. Your reflections are powerful, thank you for sharing, and I look forward to reading more of your material. Like Sonia I’m glad you have a team that provides you with all the support you need, by the sounds of it. I welcome your voice, and look forward to hearing much more of it!

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  3. Thanks Elizabeth for sharing some of your story. It’s very true that the public face of palliative care (and health services in general) can encourage the assumption that there is some ‘normal’ way to experience illness or access services. Looking forward to hearing more from you, and thanks for being involved with Palliverse.

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    • i’m just really delighted to be involved with such an important blog – and to challenge assumptions people make about palliative care and what it is, and what it means for patients!

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  5. Elizabeth this is so courageous of you to share as you have…..please may I ask …do you feel alone in this ….? Im not meaning that as a reflection on the support youve said you receive ….I. meaning….is there a place or a space in what you are experiencing in which you find yourself totally alone …..? And if so, is it possible, do you think, for you to describe to us that place….what that place feela like … whether you feel ‘okay’ there or do you prefer to come away from it …. please know that in asking this of you, I am not wanting in any way to intrude or overstep a line…I ask this humbly and with greatest respect. My question originates from experience with a mother whose child is dying …early stages … and my sincere wish to expand my heart to go into those fearfilled places she visits….to meet her there, no be on the professional periphery as a good support ….im wondering if it is right to even want to share in her suffering with her……?

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    • that is a very interesting question – and might take me longer than a comment to give credit to. i think cancer – any sort of chronic/severe/life-changing illness – is innately very isolating. essentially you are faced with your body which is, entirely without cruelty, working so wrongly that it will kill you. i can share experiences with other people with cancer – but even then i often feel isolated when talking to non-stage IV/palliative folk, because the experiences and fears of an early stage cancer (reoccurence, success of surgery, hoping for a cure) are very different to that of advanced incurable cancers (how long can we manage it, how can i maintain quality, how do accept my death).

      i think even people closest to someone with a terminal/life limited illness cannot really understand what it is to be faced with that body, that reality, in the same way anyone who is terminally ill/life-limitingly ill is, if that makes sense? i think the grief and terror that the people closest to the person is a very different one – one i have no experience with at all, only from talking to other people in my position – and the situation of a mother is a unique sort of pain.

      my advice for any of this though is try and communicate honestly, kindly, and as openly as possible with your friend to see what she needs. she may need to walk to those places alone, or she may desperately want someone with her. everyone’s approach is so very different.

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  6. Thank you for this Elizabeth.
    You are so right that what happens with those who are not elderly is rarely spoken. It comes from a place of deep fear. If I talk about this, acknowledge that this exists in the world I might become vulnerable, it might happen to me or someone I love, & hey, look at those kittens over there! Awwww, lets talk about those instead.
    This helps me recognize just how important my efforts to write about the experience of learning one is terminally ill & what to do may be. I’m a hospice social worker & have had the good fortune to learn from many younger people like yourself. I have always preferred to work with those patients & learned more than I feel I can tell some times. I’ve been wondering about the best focus to go with & you just gave it to me. I look forward to hearing more & would love to connect.

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    • thanks so much Linda (and thank you for your hospice social work. you social workers are amazing – mine at my hospital has been incredibly helpful for me). i think people specialising in assisting young and younger adults (and i’m thinking under 40 or so here) is a really wonderful thing to do – the grief and loss of what you were expecting is something i imagine is very different for us as to what it is for elderly people who have lived long and full lives.
      the process of acceptance and acknowledgement is another sort of thing altogether – and we all do it so differently.

      i write a lot more (though about pretty different stuff) at my normal blog which i think is listed at the top – i’d love to talk to you. (my email’s there too).

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  7. As a pediatric palliative care social worker, an end of life advocate, and a human, thank you so much for your words. there is so much we have to learn from the people going through serious illness, as well as those who live and care for them. Your perspective and willingness to voice it gives great insight and meaning.

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  9. Thank you for your courageous and resolute posting. You have an inspiring attitude. Immunotherapy is becoming really important in an increasing number of cancers, so there is reason to be hopeful. Wishing you the best.

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    • yup, i’m holding out for at least a colorectal trial to come up in time. sadly, i don’t have the right mutation for any of the current ones, and i have another mutation that we DON’T want that rules me out for another pile of things. but despite being a pessimist, i’m still looking excitedly at targeted therapies and what’s happening with melanoma and breast cancer treatments, and seeing the results they are getting, and hoping something is just around the corner for colorectal pals!

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  10. Young adult cancer sucks, perhaps more than any other age group. Too old for childhood cancer arenas, not (nearly) old enough for elderly cancer suites. … tough spot.

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  11. Elizabeth, my late boyfriend would have loved to read your blog. He used to say there is little for young people to connect with the experience of having cancer. He was lucky to find a group, a few groups actually. But even then, many of those young people were in remission and needed hope. There wasn’t much place for a young adult to be dying! (that’s what I think, I wasn’t there to witness it myself). How do you talk about death with people who are still actively battling the illness? I think he felt really lonely. Fourteen months before he died, he looked healthy, he evn went on a demanding kayaking trip. He didn’t look the image of death at all. Yet, his last years were his most productive.

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  12. I can relate to this feeling but kind of differently. I’m not dying so fast. I have a genetic condition that progresses at random speeds so you can’t really predict it. I could die tomorrow out of nowhere or I might live another 15 years. I’m 26 now and for the past 5 years I have been basically stuck in this cycle of going to doctors, they try a couple things, they don’t work and they give up and often just say I’m just crazy even with positive test results. Clearly depression causes your autonomic nervous system to fail or something. Now I just go in to see a new doctor and they won’t even take me on as a patient.

    But I’m not on palliative care. I’ve been asking since I think a year and a half ago, when they stopped treating me. As in the last 2 years I haven’t been given a single suggestion that isn’t some over the counter thing. Like once I called complaining my stomach was shut down and was given antacids level.

    They don’t seem to think there is any urgency but like, even if I don’t die, as of right now I can leave the house maybe 2 days a week because I need a 2-3 day buffer to recover, and doctors appointments count. I’d like to have symptom management and quality of life now, when I’m still somewhat able, then to get quality pain relief 10 years from now when I am 50% tubes and unable to get out of bed at all.

    I feel kind of bad though whenever I say this when there is some comparison to cancer because like i said, I’ve got a buffer stage and the narrative in general so different because cancer is basically “cure” or “death” and genetic illness is “time until disability/death” and I think no one really does talk about both together much. But the end stages are probably the same for both.

    And even if I’m not at that point my life has been reduced to just this sickness so the “acceptance” stage is pretty relateable. Because I’ve already accepted I’m going to die young. I’ve accepted there is no getting better from here, only symptom management and going downhill. A lot of my friends accept it too. But my family doesn’t seem to. The doctors even don’t even when they are telling me flat out there is nothing left for me to try. And it’s frustrating to be treated like you are being morbid when you are holding a paper saying you aren’t going to last very long.

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  13. I have written two books for and about young adults with cancer (This Should Not Be Happening: Young Adults with Cancer [Hygeia Media] and Meeting the Need for Psychosocial Care in Young Adults with Cancer [Oncology Nursing Society]) and in doing the literature research for both, i was shocked but not surprised at the lack of research of any kind on the needs and experiences of young adults with terminal cancer. I have given talks on this and heard the stories of young men and women facing the end of life way too soon – but the research is just not happening. Yes, it makes oncology care providers feel helpless and useless and that we have failed – but talking about it and learning more about what we need to do to make the transition bearable for YAs and their families is so important.

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  14. Pingback: The Hairy End: or, the bad shit. |

  15. Hi I have just read your blog post. I am also Stage 4 Bowel cancer. I just read that you are waiting on immune therapy. I have been on it since the start of the year. I had just three treatments and it put me into remission. Of course I am still doing the toxic chemo. I wonder why they have not tried you on immune therapy as of yet. I feel for you. I hate each day ticking away

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  16. Hello, I am the mother of a 19 year old woman dying from terminal brain cancer. She is in the recurrence phase that we were assured would come 2.5 years ago when she was first diagnosed. She has felt mostly alone on this road…as she is not a pediatric patient and not (really) an adult patient. Not many Freshman in college are dying…actively and daily. Thank you for your post. My prayer is that young adults with cancer can receive more focus in the future.

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    • Hi Kathy, I work at the Peter MacCallum Cancer Centre in Melbourne and we have identified this issue as well… our young adult and adolescent patients are seen by a separate team, the OnTrack team, which tries to address their needs which as you point our are different from both children and older adults.

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    • Hello, I am a 40 year old male, with stage 4 colon, liver cancer, diagnosed a little over two years ago….. Went through all the normal chemo, radiation etc. No surgury was done as they said it was not an option….. I have lost the use of my right leg below the knee, due to siatic nerve intrusion by the tumor, and it is very painfull, I take a lot of Methadone to control pain….. I’m not sure of my time line that is left, I feel fine otherwise and like others have said, it will be the liver that kills me, oh and I also have a ostomy for bowel movements as the colon is filled up with tumor…… if anyone would like to talk I may be open to that, I do feel alone someday but try to keep busy and not think about it….. I have 3 kids ages 21, 15, and 13 years. They are my real worry, I don’t care what happens to me, it’s the kids I worry about……. that is my two cents……

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  18. I’m a 29 yo Stage 4 breast cancer patient and nurse. Got the Stage 4 diagnosis Sug 2017, this August it destabilized and they are trying to get my brain/spinal cord mets mopped up and back to stable. I totally can echo your feelings on all this. Only problem is with me, I don’t wanna do the end-of-life planning until I turn 30 (in less than 3 months) because I don’t wanna jinx myself. But I know I should. Been dealing with this cancer since Nov 2015…a couple of months seems like a small risk at the moment.

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  19. First off thank you! My name is Kim and in October 2018 I was diagnosed with metastatic breast cancer. No cure, solely quality of life goals, I’m only 26. Like you said many believe only the elderly get news like this, but sadly we’re proof that far more are affected. Being told I’ll never be a mother or make it past 50 has been difficult, my parents and friends are all “ don’t give up!” “God will bring you a miracle” “your young and doctors can be wrong” but none of that is comforting. Nothing helps my future, a black hole, shrink. I’m in pain a lot, my cancer has spread practically all throughout my skeleton. Medications make me feel worse rather then better. My care team is great and I have support, but how great is all that support when no one really understands. I don’t know, just reading your words helped at least, for once the loneliness that’s been growing inside me felt a tad less lonely. Thank you for your voice.

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