If I could map my mood, today’s chemotherapy session would look like a particularly contorted hairpin-bend of a road.
8:45am
Josh is up. I’m heating a bean-bag in the microwave. He places the bean-bag on the arm he’ll be using for blood tests. This helps his veins “pop” and makes it easier for Una (our friendly vampire) to find a vein. Josh is a little low, of all the indignities of cancer it’s blood tests that he loathes the most. I’m chomping at the bit to get going, it’s the last of this particular treatment and I’m ready to get to the milestone.
9:00am
We are at the pathology lab that adjoins our oncologist’s rooms. Today Josh is having a “routine” panel of blood tests. From the four vials of blood they will test for liver function, platelets, haemoglobin, potassium, magnesium and calcium levels amongst others. I’m anxious. Una is on leave and I’m uncertain if the stress of a new nurse will make Joshua’s veins collapse. I’m relieved when the tests are uneventful.
9:15am – 10:30am
Josh and I greet the reception ladies and begin the long wait. We can’t have chemotherapy until we’ve seen the Doc and she won’t see us until Joshua’s blood results come though. We are bored.
10:30ish
We are expecting this to be a routine meeting and indeed it starts like that. We chat about how Josh is feeling health-wise and also his feelings about his upcoming angiogram. The doctor writes up the prescription for his treatment, agrees his next appointment and writes a different script for a potassium supplement. Then the Doctor reveals that she has decided to pursue Immunotherapy for Josh. Immunotherapy is in its infancy but seems to be having positive impact for Cholangiocarcinoma sufferers. My excitement levels zoom up the charts. My anxiety races to meet it as I consider the possibility that Josh wont have the “right” gene mutation to make him and candidate or that the medical insurer might decline to finance such a new and expensive treatment.
10:40am – 2:30pm
We drop off the chemo prescription with the clinic pharmacist and the two treatment nurses get Josh settled in. The treatment room is a nicely tiled room with two circles of lazy-boys. A drip stand is placed next to each chair. Within a an hour all sixteen chairs, plus a couple of couches round the corner will be filled.
“Which arm, today?” Vuyo, the oncology nurse, asks Josh. He points to the right and she places a fur-covered hot water bottle on his arm. She shakes open an emerald coloured fluffy blanket and spreads it over Josh. She pops out an Emend tablet for nausea and opens his bottle of Snapple for him. Josh is the youngest patient in this practise by nearly ten years. The team here are, without exception, gentle and kind to him. I’m filled with gratitude for the grace and good humour they show my son, even when (like today) he isn’t saying much.
Josh is here today for a “long chemo” – we will be here for four to five hours depending on how fast the drips run. The first drip to start is an electrolyte. The “Gem/Cis” chemotherapy treatment is metabolised through the kidneys so this drip will run concurrently with all the other treatments to ensure Joshua’s kidneys are working well.
Next up is a steroid. This helps with nausea. It has the happy side effect of increasing Joshua’s appetite. Within a matter of minutes Josh is fantasizing about dinner options. A few minutes later he’s on the phone to Shannon asking him to bring takeout. The drip is running fast today, the steroid is finished within twenty minutes. I’m amused and slightly embarrassed that whilst everyone else is looking peakier by the moment Josh is ready to gobble up fast food.
The first of the chemotherapies starts next: Gemcitabine.
“No burning?” Paula (the other nurse) asks. Gemcitabine is infamous for creating a burning feeling.
“No, it feels cold and quite nice.” Josh replies. Paula smiles and shakes her head. Josh never seems to have the same side effects as the other patients.
The Gemcitabine takes longer than the steroid – about thirty or forty minutes. It is always followed by 250ml of saline. This drug doesn’t like other chemicals and can crystallise if it’s followed too quickly with other drugs.
Today Josh is having an infusion of Phenergan. At his last treatment he had an allergic reaction to the Cisplatin. The antihistamine is a precaution. Josh is watching American God’s on his phone. I’m bored and trying hard not to be irritated by the endless quibbling of quartet of breast cancer patients next to us.
As the Phenergan ends and the Cisplatin begins Vuyo gives Josh a diuretic shot. Ten minutes later I’m trailing behind Josh guiding his drip stand as he makes his way to the loo. Bored. Slightly embarrassed by the production our bodily functions cause.
“I’m finding it hard to breath again.” Josh says. My heart rate soars. I find Vuyo who directs us to a side room. She follows us with an oxygen tank. Joshua’s eyes are huge behind the mask but he assures us he is feeling better. Paula slips through to the Doctor’s office and returns a few minutes later with another IV bag. This one contains an additional steroid to clear his airways. After fifteen minutes Josh asks to take off the mask. He’s sleepy and I am bored again. And cold. The nurses re-attach the Cisplatin IV and we restart the chemo.
Once the chemo has ended there’s another fifteen minutes where we wait for the big bag of electrolytes to finish running. I’m impatient. I want to get out of this freezing room.
2:45pm
We drive home. I assume that Josh will want to sleep but he tells me he’s going to play computer games.
“I don’t know why I’m so tired,” I tell Shannon as we sip tea, “all I did was sit in a room all day.”
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