They log into the system. Sometimes my blood has been drawn, and I am allowed to look at a printed page of its ingredients. Each week the blood flows with more or less of one kind of cell or substance than it did the week before. The nurses ask questions about my experience of my body. They enter the sensations I describe into a computer, clicking on symptoms that have long been given a category and a name and an insurance code. I care for you suggests a different mode of abstraction that of feeling than the measurement of the cell division rate of a tumour that of pathological fact. But strange reversals reveal themselves during serious illness.
Or rather, what appears to be reversal becomes clarification. Our once solid, unpredictable, sensing, spectacularly messy and animal bodies submit — imperfectly, but also intensively — to the abstracting conditions of medicine. Likewise, care becomes vivid and material.
Cancer patients left to cope with mental health problems alone | Mental Health Foundation
During my treatment for cancer, most of these workers — the receptionists, paraprofessionals and nurses — have been women. They log into the system, but they type less or sometimes not at all.
If it is the women who transmute bodies into data, it is the doctors who interpret the data. The other workers have extracted and labelled me. It is the doctors who read me — or rather, read what my body has become: a patient made of information, produced by the work of women. I n approximately 60 hours, and for the second time, Adriamycin will be infused into my body through a plastic port surgically implanted into my chest and connected to my jugular vein.
In order to administer the medicine, the oncology nurse, after checking the prescription with a partner, must dress in an elaborate protective costume and slowly, personally, push the Adriamycin through the port in my chest. The medicine destroys tissue if it escapes the veins: it is sometimes considered too dangerous to everyone and everything else to administer by drip.
It is rumoured, if spilled, to melt the linoleum on a clinic floor. Adriamycin is sometimes fatal to the heart, and has a lifetime limit, of which, by the end of this treatment, I will have reached half.
Treatment with Adriamycin can cause leukaemia, heart failure, organ failure, and will almost certainly cause me infertility and infection. Because, like many chemotherapy drugs, Adriamycin is a generalist in its destructions, it is also toxic to the central nervous system, and my mitochondria will begin to react to it three hours after its administration.
This will continue for up to 27 hours, but the damage cascades beyond treatment, is often sustained for years. As I sit in the infusion chair, the white and grey matter of my brain will begin to diminish. There is no particular way to know how this will change me: the brain damage from chemotherapy is cumulative and unpredictable. Patients report that they lose the ability to read, to recall words, to speak fluently, to make decisions, and to remember. Some lose not just their short-term memories, but their episodic ones: that is, they lose memory of their lives.
C hemotherapy, like most medical treatments, is boring. Like death, it is a lot of waiting for your name to be called. It is also waiting while the potential for panic and pain hangs around, too, waiting for its name to be called. In this it is like war. A nurse in a hazmat suit inserts a large needle into my plastic subdermal port.
Managing Cancer as a Chronic Illness
First things are drawn from me, then things are flushed in and out of me, then things drip into me. For each of these things that drip into me, I must say my own name and when I was born. Of the many drugs that I am infused with, some of them are drugs with familiar, clear-cut effects: Benadryl, steroids, Ativan. I should know how these feel, but in this context, they never feel like themselves. Instead, they combine with the chemotherapy drugs into a new feeling, each type of chemotherapy mixing with its additives into a unique mush of hybrid lack of clarity.
I try to be the best-dressed person in the infusion room, wrap myself up in thrift-store luxury and pin it together with a large gold brooch in the shape of a horseshoe. The nurses always praise the way I dress. I need that. Then they infuse me with a platinum agent, among other things, and I am a person in thrift-store luxury with platinum running through her veins. After the infusion is over, I sit up until I fall over. Terrible things are happening in my body. Someone once said that choosing chemotherapy is like choosing to jump off a building when someone is holding a gun to your head.
You jump out of fear of death, or at least a fear of the painful and ugly version of death that is cancer, or you jump from a desire to live, even if that life will be for the rest of its duration a painful one. There is a choice, of course, and you make it, but the choice never really feels like yours.
- Finding my own voice through the breast cancer journey: humour, sadness and smurfs?
- Illness Is Not A Journey Empathy Card.
- Never Gone.
- You are here?
- Illness is Not a Journey Empathy Card | Emily McDowell & Friends?
- Request an Appointment!
- Angels On Horseback / The Thundering Hooves!
You comply out of a fear of disappointing others, a fear of being seen as deserving of your suffering, a hope that you could again feel healthy, a fear that you will be blamed for your own dying, a hope that you can put it all behind you, a fear of being named as the person who cannot cheerfully submit to every form of self-preservative self-destruction written in the popular instructions. You comply from hope that obedience now will result in years in which you can disobey later.
You comply because the only other option might be to drink carrot juice and die of your own cellular proliferation, refusing to admit your own mortal vulnerabilities, pinning heartbreaking notes about spontaneous remission around your room. You must have a desire to live, but it is also necessary to believe that you are a person worth keeping alive. Cancer requires painful, expensive, environmentally harmful, extractive medicine. It took a while for the chemo effects to pass, and I missed going into the unit meeting people, but certainly not the chemo!
Life continued as normal as can be, regular three monthly check ups, bloods, meeting the Doc, wait, repeat. Early I decided to run the Birmingham half marathon, my son had completed it the previous year. How hard can it be? I said, very hard. Gym three nights a week, healthy smoothies every day, I felt great. I shrugged it off until I returned from holiday, voiced my concerns to the hospital. There was….
My treatment consisted of rituximab and bendamustine, oh how I hate that combination. It makes me feel so rough. I started my treatment early November , every 4 weeks for 6 cycles. At first the chemo had the same effect as last time… not much except the tiredness, then as I progressed through the course, it all started to happen.
Hmm, more on that later. Mid May I lost all of my hair on my head and body except my eyebrows strange I thought. Hard to accept at first, even knowing that in all likeliness I would lose it anyway. After a few weeks of tests and taking blood from my hand, as I only had one good vein left in my arm, they decided I needed a booster.
So 7 days of injections GSCF , self-administered in my stomach, and a final booster plerixaflor at the day unit, they managed to collect some cells. They needed 2,,, yes 2 million, which apparently is an insignificant amount. The problem was they only collected 1.
All very painless; just uncomfortable lying still for so long. Finally they had enough stem cells, 2. Four very stressful weeks later, after two attempted admissions, I finally made it into hospital. The four weeks and even the preceding few weeks were incredibly stressful, I just wanted it sorted. I knew it was a big thing and just wanted to get it over and done with, get on with my life, whatever it would be like after.
Twice a day, then day 7 would be a rest day then day 0: the stem cell transplant. The first six days went smoothly. I was allowed out to visit and support my partner if I bought pictures back, that was the deal with the nurses. After six days [on] my rest day, the effects were starting to take their toll, very tired, no appetite etc.
Glenda: The medical system is so slow, waiting for the tests and then waiting for the results.