Waiting for the impact of chemo is like watching a novice weather reporter describe the brink of a hurricane. Smiling down the camera lens, said guileless reporter, bathed by a sunny vista, smiles as she warns of potential doom. The slightest breath of wind flicks hair into her eyes.
I woke the morning after my first chemo infusion, feeling drab, a murky shade of grey with rising waves of nausea and searing gastric reflux. I had diligently taken the steroids and anti-nausea medication, as directed pre and post chemo and had keep hydrated. I managed to eat a few small healthy meals, though the tide was rapidly going out on my appetite. My taste buds had quickly turned from a multi focal complex sensory aid to relaying flavour as a singular metallic taste. This rendered drinking water to an unpalatable experience. It was as if I had sucked on staples.
The following two days were similar however my lips began to dry and crack and my mouth became increasingly sore. My tongue was a whiter shade of pale and heavily coated. The sides were painful to touch and the roof of my mouth puckered. Oral thrush had arrived. I had maintained oral hygiene, including using specialised products for dry mouth, and a gel for my gums. ( I had become a Rewards Member of several local pharmacies and had seriously contributed to the local economy). It made little difference to the mouth soreness, but it had kept ulceration at bay. My nausea and gastric reflux were constant, despite a flotilla of antacid tablets. The storm was rapidly moving across the ocean about to hit land.
Day four, five and six are difficult to adequately describe as words appear flat on the page. I simply existed minute to minute in a fog of greyness and overwhelming Illness. I had been poisoned and every cell was screaming with the injustice of such an act. All existing side effects were amped up and new ones were emerging. I continued to be obsessed with Greg’s safety and cleaned the toilet after each use, wiping down the surfaces with anti-bacterial wipes and double flushing with the lid down. (Frankly we had the cleanest loo in town).
I experienced dark nightmares which I awoke from distressed and sleepless. The impenetrable cloud of fatigue had engulfed me. I became regularly emotionally distressed through lack of sleep and the unrelenting malaise. Next came a delayed allergic reaction to the chemo drugs, a angry vaginal rash which was so painful and burned that I thought I’d pass out. Greg and I went to the after hours clinic in which I yet again, recounted my recent medical history. A steroid cream was recommended for the vaginal rash and a gel for my mouth to numb the gums so I could at least eat and home we went.
Day seven ended in emergency after two days of unrelenting back pain on the right hand side. Panadol over 48 hours had done little to alleviate the dull ache in my side. I feared that my liver was under duress trying to eliminate the toxins. Greg had cornered the market on pear juice and had gallantly tried to disguise water by blending the two, however day six intake was less than desirable. Drinking water had become akin to taking shots of turpentine.
On day seven, Greg and I spent over 5 hours in the Emergency Department, firstly seeing the ED triage nurse, then another ED nurse and then two ED doctors. Each person needed to hear my medical history ‘first count’ but by 11.00 p.m. and in pain my tolerance for procedure was wearing thin. I was required to undertake urine and blood analysis and have a CT scan of my abdomen. I wasn’t thrilled about yet another scan, one that has 30 X more radiation than a simple chest x-ray. I was particularly not thrilled at the level of collaboration.
I had previously researched the toxicity of radiation and isotopic dyes and begun to keep a record of all procedures, such as mammograms, ultrasounds, CT scans and MRI’s that I had undergone in the past 3 or so months. It wasn’t a question of ‘consultative medicine’ but patriarchal, and I resisted doing as I was told with my body. I consented however as there was no isotopic dye to be injected and I was keen to be reassured that my internal organs were normal. (Perhaps it is too toxic for dye, when your veins are already full of poison).
The CT scan and urine tests were normal, however my blood showed that I had slipped into a neutropenic state, where my white blood cells were compromised and that I was unlikely to fight off any simple infection or over growth in my body. I was sent home and advised to return if I ‘felt unwell’, had chills or a fever. Greg and I were less than impressed.
The next day I struggled to stay awake and at 3.00pm had managed a shower and little else. I felt increasingly weaker and by the following evening, I rang my support team member, Charmaine at 7.00 p.m. to ask her to take me back to the Emergency Department as I had a sore wisdom tooth, a sore throat, difficulty swallowing and my chest felt tight. Being that I was now in a neutropenic state, I acted as advised.
The Emergency Department at Bunbury Regional Hospital was no different to any ED that by the nature of ED attracted a range of emergencies from broken libs, sliced fingers, suspected heart attacks, drunks and addicts. The procedure is similar, firstly you are seen by triage nurse then assigned waiting priority, administrative paperwork is completed and eventually you see a doctor. It is the length of time that it takes to achieve this and post doctor review, waiting for blood tests, CT scans, x-rays and other diagnostic tests that makes the ED experience unique. It is frankly an exercise in waiting.
When you are neutropenic, care takes on an additional layer of protection. All staff need to be masked or you do, in order to prevent the spread of disease. An isolated space needs to be disinfected within protocols, all staff are then to be masked and gowned that enter the room,and then re-masked and gowned each time. Apparently this is not clear to some of the doctors who required reminding of this protocol.
The evening of day eight and morning of day nine was spent in the ED. A decision had to be made whether to admit me or to send me home. For Greg and I, it was a no-brainer. To return home, meant only to return and play the ED game again, risk more chances of infection, no antibiotics and no action. I was admitted into the medical ward at 2.00 am in a single room, isolated from others.
Days nine to thirteen have been spent in isolation with regular intravenous antibiotics, injections in my stomach to stimulate white blood cells, painkillers and daily blood tests. I have experienced achy fibromyalgia in my lower back, legs and neck, vomiting and a series of nasty headaches. Getting sleep is difficult due pain levels, the noise of the ward and one particular brain injured patient who regularly escapes from his room and freaks out by engaging in a verbal diatribe of words and repeated high pitched sounds. It is in this urban jungle that nurses and patient carers work.