Living Past Help: When a Cancer Patient & co Meet the Scarcity Model of Health Care and Support
In 2018 I asked my hospital for a peer therapy group for women with metastatic breast cancer who had been diagnosed in our 20s and 30s. I knew seven of us who wanted to participate. The hospital organized two experienced therapists to lead the sessions. The therapy was planned for 14 sessions during three months. After the initial group therapy was over, the participants expressed a wish to continue our meetings because the need for support was not going anywhere. We were all ill and dying of cancer. We were struggling more or less all the time. Meeting each other regularly and sharing our difficulties and our joys was a significant measure in survival. Our retired therapists kindly agreed to continue our meetings. Even when it meant saying goodbye to some of us. We continued our meetings once a month until Covid-19 stopped us. By then some of us had died and others died during the last year in isolation. In fall 2020 we met for the last time to end the therapy before death ended it for us all. There were two patients and one therapist present.
In the summer of 2017 I contacted the Finnish family support services (perheneuvola) for help. I had been diagnosed with metastatic breast cancer and had a family facing a grim near-future with my illness, treatment and death. We were feeling sad, angry, frightened and unsure of the future. The services responded quickly and we began to see them regularly as a family. We met our representatives two to four times a year most of the time. In June 2021 our family service workers informed us that the system was gearing toward short term help and targeted interventions and therefore, our regular meetings would have to come to a close when our regular psychologists were no longe available. We have been asked to contact them again IF we need help. My initial response to this had already been that we would like to continue with new people, as I have learned from experience that left to our own devices we allow suffering and difficulty to exist for a long time before asking for help. We were not appointed new representatives. Our current situation is too stable. I am alive and our child is not in acute crisis. I continue to live with breast cancer metastasis in the brain. I have exceeded the average survival months and years for metastatic cancer. No one knows how fast or slow my illness progression will be in the future. In our home everyone lives with sadness, anger, frustration, fear and anxiety.
In the summer of 2017 I contacted the Finnish family support services (perheneuvola) for help. I had been diagnosed with metastatic breast cancer and had a family facing a grim near-future with my illness, treatment and death. We were feeling sad, angry, frightened and unsure of the future. The services responded quickly and we began to see them regularly as a family. We met our representatives two to four times a year most of the time. In June 2021 our family service workers informed us that the system was gearing toward short term help and targeted interventions and therefore, our regular meetings would have to come to a close when our regular psychologists were no longe available. We have been asked to contact them again IF we need help. My initial response to this had already been that we would like to continue with new people, as I have learned from experience that left to our own devices we allow suffering and difficulty to exist for a long time before asking for help. We were not appointed new representatives. Our current situation is too stable. I am alive and our child is not in acute crisis. I continue to live with breast cancer metastasis in the brain. I have exceeded the average survival months and years for metastatic cancer. No one knows how fast or slow my illness progression will be in the future. In our home everyone lives with sadness, anger, frustration, fear and anxiety.
In the summer of 2019 I and my child participated in a peer camp for families with a mother who has metastatic breast cancer. In 2021 only three out of the nine mothers who participated are alive. I am one of the lucky ones. Yet, for the last year cancer has been steadily growing in my brain. I was recently put on targeted chemo. From here on out it is unlikely that I'll ever live without being on some kind of chemo. The fact that I survived for four years after an MBC diagnosis without chemo is a gift I received. It has to do with the kind of cancer type (HER2 positive) I have and the medicines that came in the early 2000s and changed a hopeless cancer type into a more hopeful one. That gift made me hungry for more.
In the summers of 2014, 2015, and 2016 I also participated in peer camps or meetings. They were usually few-day events with talk and activities. They were organized by NGOs. Those days were usually full of laughter and tears. Fast friends were made. Many of the participants have since died.
In the fall of 2019 as I was officially diagnosed with brain mets, I also became a patient in the palliative care unit of the cancer hospital. Palliative care means symptom care for patients whose illness cannot be cured. It does not mean end-of-life care, although that is one area of palliative care. I was well-informed of this and wanted to become a palliative patient. My oncologist suggested the same thing before I had time to utter the words. They can be the words that cancer patients fear. The word p a l l i a t i v e has become a synonym for death or giving up. For about a year and a half the palliative doctors and nurses called me every now and then asking how I was doing, renewing prescriptions, discussing possible outcomes and improvements. We even discussed the development of my PhD and I was met not only as a terminal patient but as a developing researcher and a human who is living her life to the fullest with the incurable cancer in the background. Those discussions made me feel safe. Even when I had no illness complaints, I knew I could reach the palliative unit easily and ask my stupid questions. Then some time in 2020 my palliative doctor changed and so did the tone of the calls. My problems could not be solved by them any longer. It sounded like I was either too ill from cancer meds to be treated by them or too well to be worthy of their time. I was bounced back and forth between doctors and nurses unsure which part of my physical experiences of illness should be voiced where. It was exhausting. The idea that I am too much creeped into my head. It was a familiar thought from childhood. I was too needy. Here we go again. Why can't I just be fine? Why can't I just be happy to be alive? Where is my thankfulness? Maybe I had truly exhausted all resources, had my share. Maybe it was time to die. To quiet down once and for all.
In effect I felt I had been thrown out of the palliative care services. In the spring of 2021 the brain mets continued their slow growth. My oncologist was scrambling to find a medicine that would address the problem without making me unbearably sick. The promise of a brand new medicine sustained me through the spring, but its arrival to Finland was delayed so in May I started a targeted chemo.
In June I sit in the office of the psychologist who works in the socio-psychological unit of the cancer hospital. I have been seeing this person on and off even before my MBC diagnosis, when I was in remission and struggling. During the pandemic we called about every two or three months. Now I am back in the office after a year and a half. My hair reaches my shoulders. I don't look ill. I sit here after so many of my peers and friends are dead from cancer, not from corona. She knows I feel like the palliative unit wanted to get rid of me. We both know it's partly a feeling of mine and not the actual intention. We also agree that I have not been treated very nicely and that there are loopholes in the systems. I have asked for new personnel. Everyone tells me it's my right. That I belong to palliative care. In the same breath the psychologist tells me about some of the restructuring that her socio-psychological unit is going to implement. I understand that they wish to focus their services to targeted periods and avoid extended patienthood like mine. She tells me that they still won't have resources for working with the whole family, i.e. involving children of the patients. I am lucky to have the ongoing relationship with the family help unit, she says. This meeting was before the one where I learned we can no longer count on it. I tell her that I have over-stayed my welcome in the structures of cancer care. That I should just make do now. Get on with life even if it hits me and my loved ones with a stick on regular weekly intervals and gives us no summer breaks and doesn't slow down to accommodate to pandemic scarcity or personal exhaustion.
I guess by now I should have learned the tricks of relaxation, self-soothing, breathing, feeling and thinking in proportionate healthy intervals. But I just keep having the feeling of needing support. I need people who listen and look me in the eye. Who can take the fact that I am both alive and lucky and not at all ok. People who can respond to my feeling of loneliness and isolation, the continued sense of not being safe, not having enough people and strucures available to me and also my continued striving for a liveable every day life where I am the agent despite difficult times. I want someone to listen when I voice my biggest fear: that I am still too much, too much with what I need and what I feel.
The psychologist mentions that our hour is up. We reserve our next meeting. I feel good about that day.
At this time, four years after receiving a metastatic cancer diagnosis I ask:
Is there an expiry date for the need for help and support?
Can a terminally ill cancer patient and her family fall through the hoops of psycho-social support by having had their share? Or by living too long?
Is it enough to offer short-term targeted therapeutic support to families that live with ongoing stressors?
In the long run what is more cost-effective: walking with those who need support continually or stepping in once the shit has truly hit the fan?
Can anyone anywhere afford to walk with these families and their actual needs if it means that help cannot just be performative (services tailored for set pieces) but may have to be continued for years?
What does it tell about our society, a Finnish welfare state to be precise that a family with a mother with metastatic breast cancer can become too well adjusted for support?
I guess it's just good luck, horse shoes and strawberry emojis until the dying truly begins. And who, may I ask, will define that for us?
Post-script: I am not criticising individual care-givers with this post. I know everyone is doing their best. I feel lucky and cared for for the most part. I wish to point to the structures of care that we currently have. Also, I do not give interviews about this post nor do I give you or anyone in the press permission to make news based on this post.
