Last Wednesday, I had to go for two scans in a row: an MRI followed by a 3D CT. This is part of the pre-assessment for SIRT, to make sure my arteries are suitable and that the procedure is “technically feasible” for me.
It was arranged by my private consultant oncologist, and when they called to tell me about these appointments, I double-checked that I would be able to use my portacath. Yes, they said, that would be fine.
If you don’t know what I’m talking about, this is my portacath. It’s a little titanium implant under the skin of my chest and is accessed by a needle. The port allows me to receive chemo directly into a vein above my heart.
I picked up Mom and Dad from Heathrow and we went up to Oxford for a bit of sightseeing prior to my appointments. My appointments were at 4pm and 5:15pm, but the letter said to allow an hour to park. We left ourselves over an hour, just in case.
I arrived at Radiology reception at Churchill hospital an hour in advance of my first scan and asked, “Do I need to go to oncology to have my port accessed?” The receptionist told me to wait and that the radiology team would let me know.
It was a cold day and I was thoroughly chilled, having just wandered around the streets of Oxford. I was also having ileostomy issues (in the way of diarrhea) so I was hoping the stodgy pizza we’d eaten would slow things down as it usually does and I began pounding back my water bottle to build back up my hydration.
Not ten minutes later, I was called through to have my scans. I assumed I was being called in early to have my port accessed or to be sent down to oncology for it.
I was taken to a cold room in which I was asked to remove my jumper and bra behind a blue curtain. I had to move my stuff immediately as the curtained corner was needed. I was taken to the other corner of the room which had a table with a pillow on it and two stools.
I immediately asked about my port and the radiographer said that they couldn’t use the port for my MRI because of the needle being metal, so they would need to cannulate me. I sat on the stool in the cold room in a T-shirt while she prepared the tray and commented jokingly on my veins, saying to the nurse “This has your name all over it,” which you don’t necessarily want to hear in this situation. I made polite, nervous chat and hoped it wouldn’t be so bad as I sat there in my T-shirt and galaxy leggings. I wished they would offer me a heated pad, a blanket or a bucket of hot water to submerge my arms in but I didn’t speak up.
The nurse came and did her pat-pat-pat thing to my arms and tied the rubber band so tightly that my skin broke in two places. I explained to her where my good vein was and told her that it was a little deep but definitely there. She insisted it was too small and instead tried to hit something 1cm away from it. I get frustrated when nurses don’t listen to me; surely I know my veins?
They filled a medical glove with warm water and applied that to my skin, but my lack of hydration and low body temperature made it near impossible to hit a vein. I felt like crying.
Finally, they decided to hit my good vein where it converges at my wrist and had success. It swelled and bruised immediately. I was told that the cannula would be used for my CT as well as they tested its ability to accept fluid with saline. It was painful but tolerable and I said so at the time. They said something along the lines of (I swear I’m not exaggerating), “You may have to just grin and bear it,” or “sometimes you just have to grin and bear it” as we walked out of the room and down the hall to MRI.
The radiologist stated before the MRI that she would be able to hear me and I could hear her through the headphones. The scan went alright until the pre-dye test scan. The test dye went in and I screamed in pain. I am fairly sure I cursed several times and started crying, saying “Please stop! Please stop!” But she wasn’t listening to me. I didn’t press the panic button because in those situations you forget about everything and focus on the pain.
Before I knew it, the dye scan was happening and resulted in more pain, more swearing and more tears. I had to do a bunch of breath holds afterwards and struggled to hold it together amongst hiccupy sobs.
When the scan ended, I was crying quite uncontrollably. I felt like an idiot. I somehow managed to get my boots on, but couldn’t use my swollen wrist to carry all of my things down to CT so the radiographer had to help me.
I was plonked on a chair in a hallway outside the CT room instead of in a changing room across the hall, so everybody walking by could see my ugly crying. I was still in my T-shirt and this section of rooms seemed even colder than MRI. The machines need to be kept cool. I tried to calm myself down as I was embarrassed and ruining my makeup but had no luck.
I was called into CT and explained that I was crying from the pain in my vein and insisted they couldn’t use the cannula for CT dye. I once again mentioned my powerport and that I was told it could be used for CTs but the team told me that the port couldn’t accept 5ml/second of power injected dye, so I would need to be recannulated. I said that Dr. Weaver’s staff had told me it was possible, but they were keen on recannulating me.
They had to call my oncologist to ask him which exact scans he would need, so I don’t know why they didn’t ask him about my powerport then. Or why they never called the oncology department.
They were more understanding and compassionate than the MRI team and offered me a blanket during cannulation and let me lie down. I was cold and emotionally exhausted and just wanted it all to be over. They put the cannula in my good vein but slightly higher than the wrist, which was painful in itself after the battering that it had just gotten at MRI. They told me they would slow the dye to 4.5ml/second to help.
The scan was as painful as expected but slightly less so than the MRI. When I came out. I was shivering and my jaw was chattering so much that the radiographer commented on it. That’s how cold I was.
The drive home from Oxford was one-handed as I couldn’t take any pain meds until I got home. I had to keep my arm elevated or it would absolutely throb.
The next day, I looked up the patient guide for my port and discovered what I knew to be true: that it was suitable for contrast enhanced CT scans at a rate of 5ml/second. I was furious and immediately penned a letter to the hospital requesting:
- Better training for radiology staff regarding the use of power ports
- Better communication to patients in radiology leaflets explaining the process of port / PICC use
- My money back for the CT scan due to the avoidable suffering I endured
I attached this photo of my arm:
The experience, dehumanising as it was, wasn’t at all unique. I’m fairly sure most of my cancer patient friends have had one of these days, too. Well I’ve had enough. I draw the line. My last good vein has taken a beating, and when it stops co-operating, we’ll have to use my groin or my feet. And then what?
Next time I’ll demand to be cannulated at oncology or by an anaesthetist. Next time I’ll speak up and ask for a blanket. Next time I’ll press the panic button. Next time they’ll be using my port!
Edit / update:
I’d like to add that all of the people I came into contact with were perfectly pleasant and ultimately just trying to do their jobs and get the scans done. I do kick myself for not being as assertive as I’d like to be; I play the role of compliant patient because I know the hospitals are busy and I don’t want to be a bother. Ultimately, I’d just like to see better communication between radiology and oncology departments as well as cancer patients so that those of us with particular needs can have access to extra care and attention.
I recently received a response from the hospital regarding my three points of feedback. I was told I’d need to take it up with my private consultant secretary. I replied asking whether my first two points could be passed along as they could benefit NHS patients as well and received a long email back basically saying nope, I need to channel it all through private. Odd.