Last Tuesday I had my regular assessment meeting at the Cancer Unit prior to starting my fifth cycle of chemo. It’s become quite routine now. It’s like part of your Frumusete Sanatate. We pitch up at the reception desk where the relentlessly cheerful Mrs. Buckwheat checks me off on her list and hands me a clipboard with a Biro attached by a string umbilical, and form CR2666.
Jo takes a seat in the waiting area and I kick off my shoes and step up onto the electronic scales. 84kg’s. I’ve put on weight. I note it down in the box on the form.
CR2666 is an interesting document. It’s also known as The Quality Of Life Assessment Form.
It’s pink naturally.
Some genius graphic designer gave it a nanoseconds’ consideration and naturally assumed that I would find this calming and friendly. That I would be soothed and reassured by it’s comely hue and feel positively disposed toward spending five never-to-be-repeated minutes of my rapidly evaporating life answering its questions.
“One of the important aspects of the assess and follow-up clinics, is to find out whether the treatments are working, and the affect (sic) the treatment has on the patient’s life. This form, filled out by you the patient, gives the doctor a good indication of how you are feeling.”
He could just ask “How are you feeling?”
At the top of the form, under the white sticker with my name, patient number and bar code (Yes I have my own bar code), there is a matrix of attributes and possible responses arranged from good to bad. For example Energy: normal / slightly reduced / tired / exhausted, or Mood: normal / a bit low / depressed / miserable and Pain: none / mid / moderate / severe.
Next is the most interesting and perplexing part. The Overall Quality of Life line. This tales the form of a single black line that traverses the entire width of the page. At the left end is printed one word. TERRIBLE. at the opposite end another word. WONDERFUL. My task this afternoon is to mark with an X the point on the line which reflects my current state of mind.
Now. The temptation is to make my mark as close to the WONDERFUL end as possible, but that would only serve to illustrate that I haven’t really grasped the true gravity of my situation, or just that I am seriously over-medicated. To stray anywhere into the left hand side is to prematurely admit defeat and is therefore philosophically unacceptable. One afternoon a few months ago I did watch a thin young asian woman put her cross over the word TERRIBLE with a trembling hand. Then she underlined it three times. It broke my heart. This only leaves a small window of opportunity about three-quarters of the way along the like, which is where I choose to plant my flag. Optimistic but realistic. Positive without being naive.
buoyed by the positive affirmation of the QOL line, I move on to the altogether more practical and sinister PAIN REGIME. The choices here are none, occasional, regular, non-morphine, and the final chilling option, morphine. After morphine, there is nowhere else to go.I know this from watching my dad’s slow morphine fueled slide into babeling dementia. Morphine takes away the pain. But it takes away just about everything else too. Including dignity and tha ability to say goodbye when the time comes. It’s an expensive ticket. And it’s striclty one way.
I’m not frightened of dying. But I am afraid if pain. I circle none emphatically and move on.
The last question is “How do you feel since your last treatment?” My choices here are: much better / a little better / the same / a bit worse / much worse. This will be the fifth time I’ve filled out this form. So far i have circled the same on each occasion. Maybe not entirely truthfully, some weeks are better than others, but if I feel sick it’s more to do with the treatment than the cancer. My big secret fear is that if “they” think I’m in decline, on the slide, not responding in acordance with their expectations, they may give up on me.
What if they decide no amount of medications or treatments are working on my cancer? What if they decide I am a hopeless case and decide to move on to other patients who have answered the same form as expected? What if I lose out my only chance of hope?
And that really would be TERRIBLE.