How Cancer Complicates Relationships (#fiction)

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Cancer complicates things. By things I guess I mean relationships, though I’m sure it complicates many other things as well. Still, it does a number on relationships. People are just going along planning their lives with certain expectations, and—bam!—cancer throws everything out of whack.

It’s like how people thought Johnny Ramone should visit Joey on his deathbed, but Johnny thought he was the last person on earth Joey would want to see as he drew his last breaths. Would Joey be more of a monster for not visiting or for showing up? I don’t have to figure it out, so I’ll leave it to you decide.

I just know there are some people I would never want to come to me as I lay dying, but others would be forgiven and welcomed on sight without a second thought, because I miss them so much. I don’t think Joey was missing Johnny, though, so maybe Johnny made the right decision. I know I wasn’t going to choose sides, but I never know what I’m doing from minute to minute, so it’s something we have to get used to.

Anyway, Kat knew her husband was wanting a divorce when she got the diagnosis. Just his damned luck she got sick and people would think he was a real heel to leave her in the lurch. Kat was not one of the people who thought that. In all honesty, she wanted him to get out of the way so she could at least have enjoyable sex once or twice before she got too sick, so she wasn’t wanting him to hang around.

Family and friends are sure to have an opinion about whatever choice he made, though, and it wasn’t easy to negotiate everything. How do you explain to your grown daughters that you are happier for their father to leave so you can enjoy getting laid once or twice before you are laid to rest? It can be done, sure, but let’s face it—it’s not a fun conversation.

She managed the whole thing somehow, though. She had an amicable divorce, was happy with how the property was divided, and managed to sleep with her divorce attorney. Not a bad trick, really.

I’m not one to say whether there’s such a thing as a happy death, but some seem much worse than others. I guess death is always traumatic for the living. Even if you don’t know a soul in the world and die anonymously in the street, someone has to find your body. Someone has to report it. Someone has to pick it up. Some find it more traumatic than others, but you are sure to leave some pain in your wake, no matter how hard you try to avoid it.

So that’s something we have to live with. As we die.

Grief Story: Daughter recalls her father’s death in the UK

The following is the recollection of a woman in middle age reflecting on her father’s illness and death some years earlier. I’ve heard many people from the UK who express similar gratitude for the NHS.

Memory is not my strong point. I say that because, when someone is dying, memory can get fuzzy anyway and I will remember some things about my Dad’s dying and death clearly and some things less so.

I guess Dad’s illness became most obvious about a year before he died. I can’t remember whether I knew it was Myelodysplasia – MDS (a form of leukemia in which the bone marrow does not function normally and produces insufficient number of normal blood cells ). What I do remember is that he started to feel tired and listless and started to have regular blood transfusions, at first once a month, then once every two weeks and finally weekly (and it could have even been more often). This trek to the hospital for the transfusions was quite a burden for him and for Mum. I was living 200 miles away at the time so heard about it in our weekly phone calls. Mum would tell me how he was doing. It seemed at first that everything was under control and there was nothing really to worry about. Life went on.

I think the first time I began to realize that something was really wrong was when I went home for a visit and saw the weight Dad was losing and how his mood was really affected by the illness. He was irritable, not his usual cheerful self. Someone had come to visit, a neighbor who, if I remember right, was also going through some illness himself. I Despairremember Dad only being able to tolerate a very few minutes of the social interaction before he had to give his apologies and go back to bed because he was so tired. I think this was a shock to me. This had to be about 6 months in.

I tried to visit more often of course, but a life in another city and a busy job kept me from doing so. I would hear in more regular phone calls with Mum about Dad’s slow deterioration. I marvel at the fact that the intense regime of transfusions and the treatments associated with them were free to Dad – a function of the British National Health Service (NHS). Over their years of working Mum and Dad had contributed their National Insurance contributions and now the NHS was doing what is was supposed to do – support them in their hour of need. Unlike here in the US, my parents never had a moment of worry about having to pay for the treatment – a true blessing at a time when any extra worry would have been overwhelming.

I learned later that Mum really knew what was happening, despite downplaying the seriousness to us (adult) children. I also learned later from her that she had tried to talk to Dad about the inevitable end point that she knew was coming – his imminent death, but, either because of his fear or discomfort for both of them in talking about such a taboo subject, she couldn’t get him to talk to her until a few days before his death and then only briefly.   My heart aches for the lack of this conversation, and I tear up now imagining what more discussions could have meant to them both.

Over the months, I think I had been hearing the stress in Mum’s voice and came to see them more often. However, she never asked for help – a Northern British trait if ever there was one. The first time she did tell me she needed me to come was on the day of the General Election in May of 1997. I will never forget that day. I was volunteering for the Labour Party that day, taking numbers at the polling station. Mum and I talked and she finally told me that she feared the worst – would I come? I, of course, said yes. I stayed up to watch Michael Portillo lose his seat  and got on the earliest train home the next morning.

When I arrived at home, I remember the stress, grief and fear that I encountered in Mum. I also remember seeing Dad, in bed, so tired, exhausted and drained. And thin, stick thin. A shock to me after not seeing him for a few weeks. That afternoon, the doctor came (yes, a home visit – a rarity these days). Dad had also been tended to by the District Nurse (as a side note, my recollection was that he had been looked after by Macmillan Nurses – an amazing free service via the Macmillan Cancer Support charity in the UK. In later conversations with Mum for this article, she reminded me that although they had applied for this help, everything happened so fast in those last days that Dad died before she got their help).   All of us, the doctor, the nurse, myself and Mum sat outside in the garden on the afternoon of 2nd May. I remember that scene so very clearly. I remember the doctor telling us about Dad’s condition and how he had deteriorated. I remember asking the doctor directly “How long does he have? Days? Weeks? Months?” I remember the doctor telling us that we should prepare for Dad’s death in the next hours and days.   It’s hard to convey to those who haven’t experienced this kind of interaction what a profoundly awful, sad and gut-wrenching feeling is engendered by this information. I think that’s why I remember it so vividly still today, 17 years later. There is something good about knowing this though, of course. It gave us just a little time to prepare.

So, with that time, Mum and I contacted my brother and sister who made plans to come straight away. That night I told Mum I would spend the night with Dad to give her some rest. In hindsight I don’t really know whether I regret that decision or not. It was probably one of the most traumatic and harrowing times of my life. I won’t go into details here but suffice to say that Dad was hallucinating on morphine and coming in and out of rational thought. It was a powerful and devastating experience, for both of us.

On Saturday my sister made it in the morning. She spent some time with Dad and then Mum and us girls made it through the day. Dad was in bed, still gravely ill but hanging on. What I now believe is that he hung on determinedly and staved off death until my brother made it home in the late afternoon. What an amazing gift he gave us for us all to be together at this profound moment. All of us were downstairs a couple of hours after he arrived and I heard a noise upstairs. Mum and I went to check on Dad and sat with him a while. Then he died.   Once more, it’s hard to convey the gravity of this experience. I was so glad we were with him to hold his hand and let him know that he was loved as he journeyed out of this world.   Once his spirit was gone and his body remained, we all as a family spent time with him, in his own bed, sitting with him, drinking whiskey and sharing tears and memories. The doctor and funeral directors came later that night and he was truly gone, spiritually and physically. To be honest much of these activities are a blur to me now.

I suppose the reason for putting all of this down on paper is partly to remember that time and have a record so that it’s noted in this span of life when I can still recall some details. Another reason is to remark on my experience of how terminally ill people are supported and cared for in England. Mum will have her own experiences of the National Health Service treatment leading up to this final time. From what I remember it was supportive. My sister reminded me that it wasn’t all great and that sometimes Dad would be waiting on a trolley until he could get a place in a ward and that this experience made him determined to die at home. However, what I do clearly remember is the warmth, care, attention and dedication of the healthcare providers I encountered. And, what I also remember is that all of this amazing care was free at the point it was needed. No-one in this story had to have the additional stress of worrying about which treatments were covered by health insurance. No-one had to worry about co-pays or debt because of the treatment my Dad had to have. No-one had to have the additional stress of worrying about bankruptcy if things weren’t covered. I know the NHS has it’s problems – it did back then and it does now. But, even though problems exist, the fundamental principles of the NHS: that it meet the needs of everyone; that it be free at the point of delivery; that it be based on clinical need, not ability to pay substantially helped my family to experience leukemia diagnosis, treatment and ultimately death in the best and least stressful way possible. I hope you’re listening America.


Patient Story: University Student Faces Surgery in Wuhan, China

I am hoping that Ethics Beyond Compliance can become a place for patients and caregivers to share their stories of medicine, medical research, illness, and loss. The following post is by a university student in Wuhan, China who had to undergo surgery and spend 12 days in the hospital (for less than $1,000). Here is her story.

Wuhan, China

In the end of May 2014, after few really spicy meals, I had dysentery. A few days later, things became worse, so I went to the eighth hospital of Wuhan, which specializes in anorectal diseases.

Knowing that I needed surgery, I felt very nervous and insecure. Then my dad asked one of our relatives, who is also a proctologist, about this hospital and the doctors here. My relative recommended a doctor for me. I went to see the doctor, and he agreed with the former doctor. At first he said he would perform surgery the day after but later told me he had some other business for the day after, so we had to do the operation that day, which was children’s day, 1st of June.

They gave me an enema first, and then had me do a lot of tests such as blood test, allergy test and so on. Later, a nurse came in and gave me a tranquilizer to prepare for the operation. Then another nurse came in to lead me to the operation room. I signed some paper for anesthesia. After a while, there was an angry nurse for the operation who, I guess, frowned on my skirt. I said “sorry,” but she kept frowning on me, which made me very upset and a little bit angry. During the preparation, I asked the angry nurse why she seemed so unhappy, and she said it was just work, nothing else. Then she tried to give me injection. But somehow she had no luck. She gave me three injections in the wrong place, which hurt me a lot. I tried to calm her and said, “It’s okay, don’t be nervous,” but the truth is deep down I felt I could not bear one more try. My hands were very swollen. Finally, the fourth went okay. During the injection a man gave me anesthesia. I could not feel my legs, and then the doctor came and asked me to kneel on my front.

I could not tell what was going on there, but I could hear what they said. The angry nurse checked my wound and said, “Ew, that’s big wound.” Then the doctor said he didn’t expect such a big one either. And he said he would show me my files later, but I said “No, thank you.” Somehow another nurse came in, made some comments and flirted with the doctor. Then another doctor in, also judged my wound, and said something that was not very nice. I swallowed it all in. I felt so assaulted and humiliated, but I could not do anything. Finally, it was over. They used the bed to send me back to my room.

I guess it’s because of the anesthesia that I still could not feel much. Only tired, exhausted. After having some fluid, I fell asleep. I remember around 3 o’clock, I was awoken by severe pain. I could not even cry loud, but somehow my aunt heard me. She woke up the caregiver, whom we hired that day. The caregiver came and helped me to pee; I felt like peeing but owing to the anesthesia and the pain, I found it difficult. After three painful hours, I finally did it. With the help of two painkillers the caregiver gave me, I fell asleep again.

Every time I woke up, I was in great pain. Still I had four more days of injections. The younger nurse tried to give me an injection but she failed and asked an elder nurse; however, the elder nurse gave me even more pain. Then there came a middle-aged nurse who smiled a lot at me even though she felt nervous while giving me the injection. I think she is the first nurse I met in the hospital who made me feel comfortable.

My dad checked on me from time to time, told me the doctor asked for more money for this operation because of my large wound. I checked the bills and found mistakes. I told one nurse, and she said she would check on it but later, and then I got no response.

I spent 12 days in the hospital, and the whole operation cost me 5,618 RMB ($905.00) not including the caregiver.