Patient Interviews
UCH CANCER CENTRE INTERVIEWS
SIMEON NELSON STUDIO
An important part of this project is to understand the subjective experience of cancer. I have interviewed a few cancer patients so far. Questions that I am interested in and have been discussing include:
What does cancer mean to you?
How do you visualise cancer?
Has cancer made you think differently about your body?
Has it made you think about what it means to be alive in a different way?
But the interviews have been patient-led, they have talked and I have listened
Wednesday 25th
14:00-15:00 - Cancer Patient A
From a Latin background, no problem talking about death
painkillers do not kill pain, but stop you repsonding to pain, make the apprearance of working to the outside world, inside there is still pain
We are part of nature, we are too sudccessful
nature will reset the balance
global population will crash
husband died 09 many
Friday 27th
10:00-11:00 Cancer Patient B
Spindle Cell Sarcoma
Had year of chronic illnesses, face pain, numbness
biopsy chemo, early menopause,
removed diseased part of jaw, but not quite enough, had to do it again
replaced jaw with fibula from both legs
almost entire jaw and lower teeth removed
severe nerve damage, chronic nerve pain like tinnitus but horiffically painful
foot feels too big for its skin
severe depression after initial positive attitude
partner carer, financial impact
changing faces, disfigurement charity
Head and Neck Ward, UCH
counselling, sexual persona challenged
abyss of the unknown
wants to help others
tooth implants
When cancer is threatened it fights back with excruciating pain to the point of blackout, entire body vibrating with extreme pain - chronic nerve pain worse than physical pain
cancer throws out tentacle to avoid excision
Morphine no effect on pain
psychosis in hospital, doctors going to kill me
the horrific suffering like being on the front line in a nasty war
not religious but treasure neighbours holy water
positive attitude makes chemo bearable
Mandibular nerve travelling through tumor in drawing
nerve gets blocked like a kinked hose pipe
no feeling in lower lip
My time is not up
16:00-17:00 - Cancer Patient C
Son died of tongue cancer
medicine not a science but an art
nhs failed son
cancer is about family
misdiagnosed cancer a lot of tongue removed
option 3 neck
can now speak and eat better
food is so important
Problems of social interation, tongue reconstruction
Tongues regrow
Son died as he wanted to happy at farm
Husband wanted to be interviewed too
4 July 2011
Cancer Patient D
14.30-15.30-
Prostate Cancer
Male approach to cancer, myth of invulnerablility, “penis prostate taboo”
Men are very unforhtcoming about difficulty in peeing and other symptoms of cancer
When something goes wrong, one gets as much info as possible re condition.
Cancer metastasised elsewhere, none left in the prostate but travelled through lymph system to many new locations, still prostate cancer.
Had most of prostate removed in a 2.5 hr operation in France. Saw cut sections like little fish in a kidney dish
Created three gardens, raised garden, 2.5 feet deep, steps up from clover patch, retaining walls,
Roof terrace, large, magnolia and roses in tubs, special roses, sold that, then front back patio, house in France, only worked on old houses
Garden mix of fruit and veg, 15 meters square, flowers and veg, artificial
Mixed ornamental kitchen garden, pool integrated into garden, cancer is like a flower, a plant, veins and stamens, petals, sepals, calyx, a flowering, an efflorescence, cancer wants to live, to flourish, to procreate, one, two, four, eight, sixteen, thirty two, etc, etc.
I dont know if it will spread, if it gets into the bone it will be extremely painful, nerves have memory, eg phantom limbs.
We are all going to die, surgeon gave me seven years, mihgt be lucky and get another 7 or 10 years, can they contain the aggression? Cant cure it when metastasised but can contain it, keep it in check, so that one can keep going.
Was a taboo about cancer in the old days,
In france I had to tell people as I was staying for a long time.
Different reaction, some uncomfortble, making them think of their own mortality.
Live for the day, not the past or the future. We must seize the now. We must make the most of the now. I am a social person, when I first knew, I dont need to be nice, I dont want to talk about nonsense, talk about important things.
Lymph glands removed in France, part of a radical prostectomy
If cancer has penetrated prostate membrane then this is automatic.
