Diary Of A Caregiver

By Diane Fine

Diane Fine is earning her Master of Social Work and PhD in clinical psychology. At the moment, she has suspended her studies to take care of her friend Katherine who was diagnosed with metastatic breast cancer. Diane has a niece who is like a daughter to her. She lives in Massachusetts.

I met my friend Katherine when I was at a boarding school in New York. A mutual friend introduced me to this nice dance student from Massachusetts. Like many school friends do, we lost contact after awhile. But five years ago we reconnected through Facebook and found out that we only lived an hour and a half away from each other.

Katherine had just gone through a mastectomy for Stage III breast cancer when we caught up with each other. She was still the wonderful dancer and committed person involved in peace and social justice movements that I’d met and admired in our youth. I was so happy to have her back in my life. Our friendship picked up where it left off, as if we hadn’t even been apart for all those years.

Katherine and Diane

Katherine and Diane

Unfortunately, 16 months ago, when Katherine was about to mark five years since her diagnosis, she found out that her cancer came back. Triple negative this time, and incurable.

Katherine’s family couldn’t look after her, so I promised that I would. I’ve never left her side. I’ve gone to all of her medical appointments and chemotherapy sessions and given her all of the emotional and practical support I can. During this time, I’ve seen with my eyes how terrible metastatic breast cancer is.

I joined a newly formed group called MET UP – the Metastatic Breast Cancer (MBC) Exchange To Unleash Power, and in that group I’ve met so many wonderful people. They have been so kind, and I feel like they are friends. MET UP is dedicated to raising awareness of the devastation of metastatic breast cancer, changing the funding directed to it, and disrupting the breast cancer status quo. Katherine led me to activism years ago, and the people I’ve met through this group have cemented it.

Taking care of my best friend has been hard and scary, even more so when I started realizing that, being the only person she can rely on, one day I will be in a position of making very difficult decisions. That moment has sadly arrived. Since July, Katherine’s health has been deteriorating, and on September 23rd, she went into hospice.

WritingAs I’m here at Katherine’s bedside, a powerless witness of my friend’s impending death, I am keeping a diary. I’d like to share some of it with you.


Katherine was admitted into hospice today. She wants me to stay with her. I’m exhausted. I feel like my mind is like mush, but I need to give her all of my energies. I promised her I would stay with her until she passes or can leave, and in any case I’ll keep campaigning with the MET UP women. I will fight in her name and for the lives of my new friends. I hate cancer.


The last days have been horrible. Katherine is going down fast. Her stomach is all distended with edema. The nurse says it’s her liver that’s shutting down. They just increased her meds tonight again to try to contain her pain.

She was up for a few hours today but was mostly vomiting and in pain. I just sat and rubbed her back.

I haven’t had a proper meal in four days.

I don’t think Katherine’s leaving here. She fell last night but thankfully didn’t break anything.

I am exhausted. This is a 24/7 job. I’m hoping another friend will stay tomorrow night so I can sleep at home, but I feel guilty knowing she is in such pain that gets worse at night.


I need to watch Katherine constantly now because she can’t get out of bed alone. Besides the hospice staff, I’m the only one looking after her. She doesn’t want me to leave even for a second. She’s scared that I’m not coming back because I’m tired or mad at her. I think I’m a kind of security blanket for her now.

The doctor asked her, while lucid, if he could invoke my power of attorney so I could make all decisions for her. We will consult her, but if she’s too confused to make a decision, I will do it for her. This feels very heavy. I’m doing a deathbed vigil.


Last night we all thought my beloved Katherine would die. The hospice staff said all the signs were there. They say she’s in an active process of dying. But she’s still opening her eyes and talking a bit, even though it’s nonsense. When I was at the nurses’ station, she even managed to get up. She’s very confused and agitated.

I kept trying to tell Katherine it was OK to let go. The priest gave her last rites, just in case.

I don’t know how she’s going on. At least we’re keeping ahead of the pain. The doctor said that since she’s young and her heart is strong, it might be longer than we thought. She’s fighting.


Katherine seems to be going again, but I’ll have to wait and see.

Tonight, a friend of Katherine’s visited and made her laugh. Even though she was in and out of lucidity, she actually had some moments of laughter. We massaged her hands and read from a lovely daily inspirational book. Katherine’s friend is a lovely Sufi woman who does much of the peace work with Katherine. It helped me to have her here. She’s another gentle soul.

I’m watching Katherine’s body jerk and again the apnea is starting. I think it will be another sleepless night for me.

I’m so grateful to the kind staff who have been so supportive of me and take such good care of Katherine’s body. I’m praying that God, spirit or whatever releases her gentle soul from the devastation that is her body.

I feel horrible. I started having an anxiety attack this morning, and my asthma was acting up. I want to stay strong, but I’m emotionally and physically exhausted. We’ve been in this nightmare for 16 months, Katherine and me. Others have helped us, but she says she feels safest with me. I need to honor that.

She’s fighting so hard. All the staff are amazed.


I fell asleep at 4 am last night. I had to take something to calm down.

This morning at 7 am, Katherine was already awake. Miraculously, she got up with help and walked to the kitchen sun porch, even sat outside. She then went back to bed.

In the afternoon, some people came to visit. Her sister brought a keyboard from the family room. We all sat listening to her play, and she was dancing with me on the bed (sitting). One of her friends, another peace activist, suggested songs they sang at vigils. We all held hands and sang songs like “This Little Light of Mine,” “Down by the Riverside,” and “We Shall Overcome.” Katherine was singing with us. There was a lot of crying because it felt so nice to have her back.

A day like today makes me think Katherine will be OK, that there’s some mistake. I know that’s not the case, but it makes me much more aware of how much I’ll miss her.

Katherine Dancing

Katherine Dancing

At the same time all this was happening, I was calling the funeral home about cremation costs and sent another friend to Katherine’s apartment with a rent check and to tell the landlord that this is the last month. It was surreal doing that while Katherine was lucid. I obviously didn’t tell her I was doing it.

I’m worried that today really may have been her last rally. I’m listening closely from my bed to hear her move and breathe. Now, I don’t want her to go. I want her to keep being like she was today.


I went home last night for an appointment and some other stuff. Katherine’s sister stayed with her. I didn’t like leaving but felt better that at least she wouldn’t be alone in the evening. Nights are worse.

Now I feel so guilty, so stupid, like I should have cancelled my appointment. Katherine called me. She kept saying she did something horrible and they were kicking her out. She wanted to know where I was. She said she didn’t want to die alone. I felt terrible. I had taken something to help me sleep and knew I couldn’t drive. Poor baby… I guess she got really paranoid, agitated and scared. They took her catheter out because she kept pulling on it.

When I arrived this morning Katherine had been up for some time. The staff was glad when I came back. They all recognize that she is calmer when I’m here, and listens to me. A friend and I wheeled her outside.

Katherine keeps looking like she’s going to go, but she’s fighting. She said she’s scared to lie down, afraid she’ll die.

I love her. But this is a horrible life. She is a dignified person, and to realize that she’s wearing Depends would be horrible for her. I wish I could ease her fear of dying. I keep feeling cruel to say it, but I want her at peace.

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