This month’s blog was going to be about having a PET scan as a wheelchair user, but as always with me, the experience turned into a whole lot of something else…
Photo taken one day after the PET scan when I was bed-bound.
Alt Text: A black & white selfie pose of a white, middle-aged woman, with a bob-style hair cut, wearing a nose ring & a leopard-print pyjama top, resting her head on a pillow case with a dot style print. She looks exhausted.
Before getting into telling my story, I want to acknowledge that it might make uncomfortable reading. I struggled internally as to whether I should make my experience public, because essentially it’s another spotlight on how inadequate our NHS has become. You know I’ll always support the NHS & defend it forever. I acknowledge that it’s been ruined by years & years of underfunding & political “interference.” I know that a lot of healthcare workers have left because they’re exhausted, underpaid, undervalued & working within systems that are often not fit for purpose. But when the systems impact on staff so badly that they lose sight of the need to to treat a patient with compassion, dignity & respect, that the staff treat anyone that needs a bit more support as an inconvenience, then we’re all in trouble. My patient experience has been rapidly getting worse since the end of 2021 & it’s not the NHS that I recognise & love. And so that’s why I’ve blogged about my recent hospital scan. It was really, really humiliating & I was frightened.
I’d planned for this blog to be a practical guide for anyone disabled, predominately if you’re a wheelchair user, on how the PET scan experience might be, so I’ll start with giving my tips first.
To give some context, a PET scan is a ‘3-d’ view of your tissues, muscles, organs & joints. One of its purposes is to see if cancer treatment has worked, or if cancer has spread elsewhere in the body. My oncologist agreed to me having a PET scan because I was reporting systems of what could be potentially secondary breast cancer (painful joints, muscles & bone – especially to the thigh bone), vomiting & constant nausea, & a general feeling of being unwell over the last 4 – 5 months.
A PET scan is nuclear medicine; it’s done with an injection of a radioactive tracer. You wait an hour, & then you have the scan. It’s a table with a tunnel & not dissimilar to MRI or CT scan equipment.
You’ll need to think about how you transfer on & off the table which often isn’t adjustable (check if they have a hoist – I can stand & transfer so I didn’t find out if the department that I was in, had one), & you need to be able to lay flat on your back for up to 45 minutes. However, often the scan takes between 15 & 20 minutes. If you’re claustrophobic, you can request a tunnel with more room.
It’s a fasting procedure. You usually fast for 6 hours before the scan, but there is specific guidance if you’re diabetic. You can drink plain water right up to the procedure (but this is where the letter that I received gave conflicting information, more about that later). Blood will be taken to determine your glucose levels. When you book, they’ll ask a standard list of questions such as whether you’re diabetic, when was your last period, if you’re menopausal or if you have gone through the menopause, if you have any metalwork in you, if you’re on chemo, if you’re having radiotherapy, if there is a chance that you could be pregnant, if you have any allergies (such as latex, plasters etc) – pretty standard stuff. It’s here that I would advise detailing your access requirements, phobias etc. However, this was the point where an important intervention could have been made by the booking team & if they had noted down some key details about me, it could have vastly changed my experience. When you get to the scan, they’ll go through the same questions & more, such as how many operations you’ve had & when, what medication you’re on, etc – all standard stuff. Again, I’d advise reiterating any access requirements, allergies & phobias at this point.
I think something important to think about is if you need assistance and / or reassurance from one other person to be with you during the procedures before the scan. You’ll need to go to the loo at some point & you’ll definitely be asked to do that just before they scan you. You might need help with drinking water too or removing clothes and/or shoewear that might have zips / metal (best thing to do is not wear them in the first place, along with any jewelry). You might need help getting around when you’re pushing yourself with a cannula in your hand or lower arm, they can get caught in the spokes of your wheelchair. I also felt cold when I was waiting for my scan, so I’d bear that in mind. Once they give the nuclear injection, they propose to leave you alone in a room with the door closed because you’re radioactive, & you remain radioactive for 6 – 8 hours after you’ve left the hospital. You’re not meant to be around people who are pregnant or of child-bearing age, & young children for all of those hours. This wasn’t included in the information that I received & it caused me issues – again, more about this later. I’m not sure what they do if you need assistance in the scan, but the hospital staff helped me & my patient advocate (provided by the hospital) stood behind the screen with the staff.
If you take more time to do every day tasks, or you’re getting hospital transport, then they’ll potentially ask you to rebook for the morning instead. My scan was booked as urgent so my appointment was late afternoon. This would have been fine if the staff had:
- Followed the information that was on my medical notes
- Had listened to me in the pre-scan procedures
- Made me aware of things like the amount of time the radioactive tracer stays in the system, or if I could continue to drink water right up until the scan
Next time I need a PET scan, I’ve been asked to book in the morning & to prepare the team that they might have to give me an injection guided by ultrasound.
If you have any issues with veins, such as them being deep, fragile, hard to find, etc, then please try & get this across to the booking team. Because you’re fasting, it might be a difficult experience for you so my advice is to drink plenty of water. If you have a needle phobia, then make sure that’s not dismissed by the booking team – one of the team said to me “oh, you don’t like needles” to which I replied, “it’s a phobia, it’s not about not liking needles, it’s much more than that.” Staff often dismiss any kind of issues with needles by saying stuff like “nobody likes them much do they?” “Just look away.” I told the booking team that a patient advocate from the hospital would help to keep me calm during any procedure involving needles. This wasn’t recorded.
And so to my experience. It’s true to say that it was never going to be straightforward because I’m a disabled person undergoing cancer treatment which is making my impairment worse & I’ve always had very deep & fragile veins. I’m needle-phobic – & I don’t know why because it’s a phobia that I’ve had since I was a child. I need help to do every day tasks with the assistance of one other person. But it still could have gone smoothly, which it didn’t.
My experience was vastly transformed by my patient advocate (I think I’ve mentioned her in a previous blog) who literally saved the day – her intervention meant that I did eventually get my PET scan.
On the day of the scan, I stopped eating at the required time & I drank plain water for up to two hours before the scan – I thought the letter had said that. The booking team rang to ask me if I could come slightly earlier because of a prior cancellation. I agreed to this. When I arrived, I informed the booking team that I’d be joined by a patient advocate – the booking staff looked a bit non-plussed as to what an advocate was, & why they needed to be there.
I was called in very quickly, then shut in a room all on my own with one other staff member. She asked me a set standard questions which were a bit more detailed than the booking team’s ones & when I let her know of my phobia, allergies & access requirements, I was met with a blank look. It was then that she informed me that she’d be doing the injection now, & that I couldn’t move from the room or go onto my work event afterwards because I was a radioactive risk to others. I can’t deny that wasn’t bitterly disappointing because I’d been supporting a colleague to set up & deliver that event since October 2022, but I accepted this. I did ask why the potential harms weren’t made clear on the form though. She didn’t reply. I spent some time texting work to give my apologies about not being there in person at the event. My colleagues are so supportive, thank god for them.
In the following days after the scan, I saw detailed information online about PET scans & then I chastised myself for not being more diligent in preparation. But before the scan, I’d stop searching for information on social media because ‘Dr. Google’ wasn’t being my friend – it was fuelling my ‘Scanxiety.’
I explained to the female staff member present that, because of my phobia, she couldn’t do the injection without my advocate being present. And I said that I couldn’t be alone because of my access requirements. She muttered something about me perhaps being allowed to have the door left open & my advocate sitting in the corridor 1 metre away from me, but she’d have to get special permission. Then she let me return to the waiting room so I could catch up with my partner & wait for my advocate.
However, the hospital staff didn’t bleep my advocate, so I opted to go into the procedure room alone, with the hope that she would turn up at some point (she did, & the first thing that she asked the staff was why hadn’t anyone bleeped her).
Once in the procedure room, a nice chap came along & was trying his best, but unfortunately because the letter appeared to state that you could drink water but you had to stop this two hours before, & because I have Spina Bifida, Raynaurds & I’m affected by the side effects of treatments, he couldn’t find any veins. Despite my protestations that he would be advised to seek assistance from his colleagues and / or wait until my advocate arrived, he tried more times than he should have done to find veins. And he wasn’t really listening to what I was saying – like “This is difficult for me”, “The veins in my upper arm tend to be better,” “Can you hide the tray of needles please?” “Can you use the thinnest needle you have?”, “Can you ask one of your colleagues who is trained to get blood from problematic people to do it please?”. etc.
Of course, because my fears come from an irrational place, I started to get agitated, & then I started to panic. Bizarrely, but I guess he might have been following medical training, he started shouting in my face at the top of his voice “Breathe, breathe, pull your mask down, breathe, breathe!” That freaked me out. Then he started to flick my veins which was the only sharp pain that I had. Pushed to my limit, I shouted “stop doing that!”
Then he left me in the room with a tray of needles spread out in front of me & closed the door behind him. I heard muffled voices. A short while later another female staff member appeared. She said she’d try a butterfly instead of a cannula. Then the first guy arrived back & they started talking over & about me, but never to me, so I chose to save my energy for focusing on coping with my phobia. And I wasn’t being listened to anyway so what was the point in me speaking? I completely shut down. Her tries were just as unsuccessful. I think at this point the ‘patient-blaming’ started. They said I hadn’t understood the letter properly because I could have drunk water right up until the scan (they didn’t offer me any water at this point & refused to review the letter when I offered to show it to them) & that I hadn’t informed the booking team of my needs (I had, several times over & my needs are written into my medical notes!)
A different guy appeared & the patient-blaming got worse. I was very distressed by this point so the staff stopped again, because all their faffing about meant that I’d lost my scan slot. I refused to wait alone in the room with the door shut as I was fairly traumatised, & they allowed my boyfriend into the room to sit with me. Once alone with him, I became really angry & he was upset at what state I’d been left in. I’m pretty sure they heard my anger spill out.
But as if by magic, my patient advocate arrived, having come to look for me after she wasn’t bleeped. She wasn’t pleased with what she saw. She has been with me ever since my lumpectomy just under 3 years ago, & she’d never seen me in this state. Then the three staff rushed back into the room & acted quite differently with her around (surprise, surprise!) My advocate explained to them all the ways in which they should be treating me; that the veins in my upper arm were better, that the chemo unit would place my left hand into luke warm water for 10 or so minutes to open the veins. In the same breath, she asked why a tray of needles had been left in front of a needle-phobic patient, & if dehydration was an issue, why hadn’t they fetched me any water? My advocate wasn’t saying anything different to what I had explained, but they took notice of her because she was their colleague. I was so grateful that she had taken charge of the situation.
After establishing that nothing useful was going to come out of my left arm, & knowing that they couldn’t try my right arm as this is the side of the lumpectomy & lymph node renewal, & they couldn’t try my left foot because its affected by my spina bifida, they then suggested my right foot. I broke my self-imposed silence to say that I’d never been through this before but that I was willing to give my foot a try (I was also reminded of that lyric in ‘Lust For Life’ that goes “Of course, I’ve had it in the ear before…”). The last guy to enter the room was tasked with finding veins & he started to place surgical gloves filled with luke warm water on my foot to warm up any veins. I was also given three cups of water & this did open up my veins; unfortunately not enough to get a needle in. He also remembered to do a glucose finger-tip swab, a procedure that had been forgotten in all the chaos.
I was perturbed because the veins in my foot always look big & lie at the surface, but still no vein came. Hence the title ‘Holy Fook / Foot!’
All the time, the guy was commenting that I wasn’t flinching or crying out in pain when he was trying to jab the needles in. I patiently explained that my phobia wasn’t about pain. Then he started to mutter that I’d have to rebook, & it had to be in the morning next time, etc. It elicited this response from me “Well, you’re going to have to find a vein because I’m not leaving without a PET scan. My oncologist is calling Monday to give me the results.” At this point he mentioned that he had a colleague down the corridor who could find veins guided by ultrasound. Resisting the urge to scream out “why didn’t you refer me to him before & why did you try so many times over when you knew this was available!”, I realised that my advocate was already out of her seat & off to find him. And when she did, he agreed to see me.
The PET scan team had jabbed me over 10 times in my left arm & in my right foot to find veins.
I followed her down the corridor & entered a room that wouldn’t look out of space at NASA. I exclaimed “Wow!” at the biggest screen I’d ever seen, suspended from the ceiling & hovering over the scan table. The ultrasound guy was very calm & quietly confident. To my relief, he treated me with respect & listened to me from the start. He explained everything carefully, most importantly explaining that he would only try once to find a vein, & if it didn’t work, I’d have to rebook. I accepted this. Then he began an ultrasound procedure on my left arm; carefully & methodically. And he found a vein! He inserted a line with the third staff member assisting. Done. Simply, kindly, gently, painless. I was so grateful to him, & my advocate & I thanked him profusely.
I went back into the little room & the radioactive tracer was administered – this is completely painless. My advocate was allowed to sit 1 metre away from me, on a chair placed in the corridor, with the door open (& this is a reasonable adjustment that anyone who needs assistance can ask for). We chatted away & I was able to relax for an hour before the tracer was ready. There was just one more thing to do before the scan – going to the loo – which I did & then I was taken into the PET scan.
My advocate wasn’t taking no for an answer in terms of not being present for the scan, so she stood behind the screen with the staff member. The PET scan was completed with the guy who had first tried to get blood from me. He had stayed behind to help which I thanked him for. But as I was gently swinging my legs over onto the table, he insisted on helping (& probably wanting me to hurry up) & he grabbed hold of both my legs, then lifted them high to swing them onto the table. I cried out in pain, it was an involuntary cry. I explained to him that my left hip was partially dislocated & that it’s best if I manage the transfer alone. It turned out that he’d put me in the wrong place anyway! I dutifully got off the table to reposition myself, & then I showed him how I swing my legs up onto the table – this time he didn’t help, thankfully. He gave me verbal instructions so I could complete the rest of the positioning, & then we were off! The tunnel moved up & down my little body, taking its measurements. I was laying on my back with a block under my knees. If you move in the scan, they have to start again, so I focused on my breathing to try & ensure that I didn’t spasm. That’s really hard to learn to do. The last 5 minutes of the scan were agony & I wasn’t sure if I was going to spasm right at the end. But I made it through the scan without any major mishaps!
At the end, the staff member was very apologetic about what had happened, & I over apologised too. My advocate said to me earlier that if I did ever want to scream, shout & cry, that was totally fine as people do “all sorts” & that the staff wouldn’t take it personally. But in serious situations like this, I always say “sorry” & “thank you” as much as I can in an attempt to get people onside & then there might be more chance that they’ll meet my needs the next time around. Sadly, remaining calm didn’t work in this particular situation, & there’s no doubt that if my advocate hadn’t have been present, my experience would have ended much more traumatically.
I need to thank my advocate once again for her total dedication, for making my needs clear to the PET scan team. And to ‘play it forward’, whilst I was otherwise occupied, my advocate went off to talk through the needs of a couple of other disabled patients under her care.
If you can get an advocate who knows their ways around procedures using reasonable adjustments, it’s just the best thing ever.
Sadly, another reason for speaking out is that I wasn’t the only person who rejoined their relative in the waiting room, looking like they’d been through a traumatic experience. Another elderly gentleman was there with his wife, & they both looked shell-shocked when they’d finished with the PET team. I felt really bad for the old man as he looked as if he was currently receiving a lot of treatment. Perhaps a culture / attitude change is needed towards the patients from the PET scan team?
I’ll end by reiterating that the staff there were trying to do their best under difficult circumstances, & I really empathise with this. But they’d lost their sense of remembering that there was a human being on the receiving end of their treatment. Ironically, if they had listened to me, they might well have had an easier time treating me & not have had to stay late to complete my scan. Somehow I’ll find a way of getting 3-4 more (simple) requirements added onto my notes so I can be more confident of the experience – if I have it again in the future.
I spent the following day in bed, unable to move because they attempted to get blood from the only foot that works; the one I use for my standing transfers, balancing etc. I was battered & bruised. I think the crushing fatigue came from me trying to process that traumatic experience. The following days I did very little. Saturday was the first the day where I felt better,
In the end, my PET scan was completely clear of cancer, which I’m so very relieved about.
And our work event was a fantastic success for the charity that I founded.
Photo image taken from the Saturday after the scan.
Alt Text: A black & white selfie pose of a white middle-aged woman with her hair cut into a bob style. She is wearing makeup, a large, silver hoop earrings, a small, silver nose ring, & a cardigan. She is smiling. She is in her lounge.
2 thoughts on “Holy Fook / Foot!”
Wow! What an experience Suzanne and, as always, thanks for sharing.
If sharing this makes a positive difference to one person it will have been worthwhile.
You’re a real trailblazer with your courage and tenacity!
LikeLiked by 1 person
Thank you so much for your kindness Geoff. I have had a few people reach out through Twitter to say they’ve had similar experiences so I’m glad I spoke up.