After I experienced complications with my PEG tube, my first chemo session was delayed. I had already met with my Chemo Oncologist so I already knew that I would be given high-dose Cisplatin, and I knew what the possible side-effects would be. I also knew that the procedure would take six hours at least. I knew that I would have three chemo sessions and the dates that they were scheduled for, and that it was important that I attempt to make all of my chemo appointments. The only thing I knew nothing about was the actual procedure itself.

I had already seen the chemo area because it shares the same reception as the regular clinics (radiation therapy has it’s own reception).  I was amazed at the sheer number of people sitting there, waiting for their turn. I checked in at reception, completed my wellness check questionnaire, and was directed to the lab for blood work.

I had been issued a red patient ID card and the number imprinted on it would be my identity while in the chemo area. I checked into chemo reception by swiping my card in a kiosk in the chemo waiting area, then took a seat. Before long a nurse called my number, and we followed her to her little side office.

Her name was Sherry, and she was very helpful in explaining what I should expect to happen. She reviewed the blood work: it was important that my white blood count, red blood count, magnesium, calcium and kidney levels were normal (along with other blood measurements) before proceeding. She recorded my weight and blood pressure, then showed me the patient status board.

It looked like a flight status board you’d see at an airport. She explained that I could see the status of my treatment, or where I was in the chemo process. I could see that my patient ID had checked in, had been approved for chemo, and was now waiting for the pharmacy to concoct the chemo drugs specifically for me at my weight.

Sherry then told my husband to go to the centre’s pharmacy and pick up my antiemetics (aka anti-nauseants). I would need to take one prior to treatment. My dysphagia (swallowing problems) had progressed to the point where I couldn’t swallow pills any longer, but I was still able to swallow soft foods so I mixed the anti-nauseant in with some yoghurt. The rest would need to be sublingual (dissolved under the tongue) or in capsule form so that I could break the capsule open.

As we waited for the pharmacy to finish their prep, we  reviewed the anti-nauseant schedule.  There were four  different anti-nauseants, all to be taken at different times of the day:

• one to be taken prior to chemo
• one to be taken as needed
• one to be taken for 2 days following chemo, morning and night
• the last to be taken for 3 days following chemo, first thing in the morning

Good thing we were prepared with our medication schedule back at home.

The patient status board changed to say that my drugs had been received from the pharmacy. When the pharmacy delivers the drugs to the chemo area, they are required to ensure absolute safety due to the toxicity of the drugs. They transported them, even though it was a short distance, bagged in secure packaging inside a locked specialized cart, and the pharmaceutical assistants transporting them are donned with protective gear in case something leaked.

The status board then changed to tell me to proceed to my assigned room and bed. There were several treatment rooms: some had beds and some had reclining comfy chairs, and each room could accommodate four to six people.

I was still suffering considerably from my PEG procedure and was confined for the most part to a wheelchair. Seaghan wheeled me to my room behind the doors with the hazardous materials sign on the door (scary), the nurses helped me to my bed, and then I was hooked up to an IV via my handy PICC line. We were offered as much water or juice as we’d like.

Can I just interrupt this story to say how much I love those blanket-warming machines they have in hospitals now? The room was a little chilly so I was tucked into my bed with two cozy warm blankies. It was very comforting.

My six hour chemo session started off with intravenous hydration for an hour. The chemo drugs would be hard on my kidneys and this would help prevent damage.

When it was time to administer the drugs, I was asked to confirm that it was my name and birth date on the drug packaging, and that it was the correct drug name. They weren’t taking any chances.

The drug was hooked up to my IV, and I just sat there wondering what I would feel. I was anxious — would I feel burning in my veins? Would I feel sick? Would I have a reaction and get hives or a whopping headache? How long would it take to start losing my hair? You know what I felt, aside from the stomach pain? Nothing! Nothing except for the need to use the washroom frequently due to all of the liquids being pumped in. No problem with my kidney function, no sir.

There was a separate washroom reserved strictly for chemo patients in order to eliminate the possibility of a non-patient coming into contact with chemo drugs through contact with urine. Yuck.

The nurse had to disconnect my IV machine- drug dispenser from the wall outlet. They had batteries which meant that it would still dispense my drugs at a consistent drip while I was away from my bed. It was a bit challenging to get me into my wheelchair and then navigate it and my IV machine to the washroom, but Seaghan managed it.

Back into bed, then it was getting close to noon and we were both hungry. They have wonderful volunteers who heat up soup and bring it to everyone in the chemo area who wanted it, patients and accompanying visitors alike. I opted for chicken noodle soup, thinking that I could manage to swallow that. I was wrong.

I thought that I had been chewing everything well enough to go through the narrowed throat but the tiniest piece of noodle got stuck. Into the bathroom again to try to disgorge it by throwing up. No luck, it was determined to stay. In comes the Oncologist with his scope down my throat to remove it, and from that point on I was banned from having any more solid foods. We had been warned that my swallowing may be permanently affected, so we couldn’t possibly know if that stupid noodle would be the last solid food I would ever eat or not. I was so very disheartened, disappointed, and very very unhappy. 🙁

I would enviously watch other patients eat glorious lunches and enjoy free samples of cookies and treats, and I couldn’t have any of it. I could only have liquids; but at least I could still drink my tea, thankfully.

Since I was captive audience, the chemo nurses and dieticians decided to pass along some patient care instruction to us.

The chemo nurse gave me instructions to take my antiemetics as instructed, as they really would help. And they did help, a lot! I experienced mild to moderate nausea for the next few days, but nothing compared to what I thought I could have, based on what I witnessed other patients going through. I was also given a card with the number for the chemo nursing station. If I had any questions or issues over the next few days I could call and leave a message, and someone would call me back. There was an after-hours on-call chemo Oncologist as well, in case of emergencies.

The last bit of advice was the most important of all, Sherry said. Chemo affects my immune system so I would not be able to fight off any infection as well as I should, and even a minor sign of infection could rapidly escalate into a very serious problem. She said I should take my temperature regularly, and if it ever gets up to 101° F I should proceed directly and immediately to the nearest hospital emergency ward, do not pass go do not collect $200. I should then tell the emergency ward that I was a chemo patient and they’d know what to do. My temperature actually did spike to 101° once, so off we go to the hospital where I was immediately placed into an isolation room. Turns out they couldn’t find anything wrong (blood tests didn’t show any sign of infection) so I was sent home after a few hours, but with a side order of antibiotics just in case.

The dietician showed me how to use my new feeding tube and how to take care of it. I’ll talk about that in my next post.

After the chemo drugs had been administered there was another round of hydration. It contained a drug that would encourage my kidneys to flush out the toxins, and so back to the bathroom I went. I really was worried that after all of that, I wouldn’t be able to last the hour-and-a-half drive home.

I was disconnected, my PICC line was flushed, and home I went. My chemo treatment was followed by a week of in-home hydration via IV because of my inability to drink in enough fluids. What I could drink wouldn’t be adequate enough to flush out the toxins and also to prevent dehydration.

A few radiation sessions and my first chemo session, done! I’m actually being treated now, instead of getting the runaround. I thought that it would be smooth sailing now that I had experienced both radiation and chemo treatments, but my subsequent treatments proved me wrong. More on that in future.

—Sandi

Next time: Looking after my PEG feeding tube

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