So, I went for my CT scan at Luton hospital last week. The whole thing was utterly exhausting, and it was hard for me to keep things in perspective. I did get through it, I remained polite, I got my scan and left. This coming Thursday I will return to Luton Hospital and find out whether there is something sinister or not.
I find things difficult at the best of times but getting around during the covid19 pandemic is in league of its own, one needs a degree in logistics. To be frank, I’m in so much pain, the drive itself was a chore and I was pleased to arrive in plenty of time and find the disabled carpark fairly easily.
Because I use a wheelchair and/or a trolley seat (a mobility aid which means I can walk a bit and then sit for a bit) I had the foresight to call the hospital to check where I had to go. The information they had sent through the post didn’t include anything for disabled people. I wanted to make sure the scanning dept. was okay with me not having the blood test for the kidney function, as I wasn’t having the contrast.
The lady who spoke to me on the phone was really helpful and assured me that they always see people on time so not to arrive early, else I’d be waiting in the cold and that it was fine about the dye, I didn’t have to had the contrast.
The journey went well, I did arrive early in the carpark and thought it wise see the scanner zone and check out its location. Good job I plan for bad luck as it took me ten minutes to get out of the carpark.
I was not happy. You cannot imagine the pain I am in when I stand up. I have a walking stick and a light weight frame on wheels which pulls out into a seat. I walked around the disabled carpark, twice. I then pulled out my seat and sat down. A white van was parked near me. I could see someone sat in the driver’s seat. I stare at the windscreen.
The window of it starts winding down and a man puts his head out of the driver’s side. He shouts across to me,
“You okay love?”
“Not really,” I reply. “Am I expected to jump this fence to get into the hospital? Where’s the exit?”
Yeah, very funny, I thought, as I was barely keeping the tears at bay. He pointed towards the wooden builder’s hording wall just in front of us and said,
“It’s on the other side of that. Just go around to the right there, around the corner and you’ll see it.”
I thanked him, gave him a smile which hopefully did not say you fucking arsehole for watching me for what seemed like an eternity, stood up with the aid of my stick and pulled my trolley around the white painted hoarding and, yes, I found the exit of the carpark and finally, into the hospital.
How hard would it have been to put a sign there?
It was then a further ten minute journey for me of walking, sitting, walking to get to the zone where the scanner was. I arrived at 9.25am for my 9.30am appointment. The weather temperature was three degrees according to my car. I was glad to be wrapped up and was feeling smug that I had a flask of tea in the car for when I returned to it. My heart was proper pounding in my chest from the effort, but I was pleased I’d not used my wheelchair as it had all been up hill.
I had my mask on. I’ve got a black fabric one as I have lung disease and need to breathe. Since I was little, I’ve covered my mouth in the cold. It hurts less when you breathe in through a scarf or big fluffy collar or cowl. I don’t mind wearing the mask but when I walk, I cough. Nothing clears the pathway faster, like Moses parting the sea as I walked through the hospital grounds, people crossed over the road rather than walk near me.
I found the area where I needed to be as a kindly man could see I was lost and struggling. He pointed out that I was really close, and but for the lack of signs I would have known.
The kindness of strangers is something I’ve come to rely on since becoming sick. I’m thankful that as a tall person I used to help people out when I was able. As a tall person you are obliged to help out shorter people or people in wheelchairs, it’s part of the ‘tall people’s’ code.
Arriving in Area D…the CT scanner. I realized that it was directly opposite Area C, which is the children department. When I say opposite, I mean the CT Scanner door was approximately two metres from the entrance to the children’s hospital.
I only point it out as they were queuing to get in and I had to wait amongst them.
Social distancing rules have seen the hospital remove seats and benches, so I was pleased with my trolley seat and tried to position myself so that when I coughed, I was facing the scanning unit rather than the pathway. I heard several envious comments about my seat.
I feel it is an ill thought out plan to keep people waiting in the same area where sick children are also waiting. It was impossible to social distance. In order to get their temperatures checked before being allowed into the hospital this queue was being pushed passed by people leaving the hospital too.
Also, it is wrong to make people stand in the cold when there is a respiratory illness going around.
Getting temperatures checked before being allowed INTO the hospital. There are too many things wrong with this…I mean the point of coming to the hospital is that you are ill.
I listened as one by one the parents were told that only one of them could attend by the side of their sick child whilst being made to stand next to strangers coughing. There was one nurse on checking them in and she was doing a cracking job at moving the queue along. I cannot blame the staff, but surely common sense would suggest this queuing does not meet the anti-transmission guidelines.
As per a sign’s instruction, I knocked on the scanner unit’s door and waited. Nothing happened so I waited until exactly 9.30am and knocked again. A serious looking man put his head around the door and asked my name. I inwardly cringed as I feverishly hoped someone else would be in there and I’m not alone with him but keep my anxiousness under control smile and give my name. He doesn’t smile back, nods acknowledgement, repeats my name and closes the door again.
A few minutes later he opened it again and tells me that they have a patient in, and it shouldn’t be much longer. Then he squeezed passed me to go get a cup of tea. I will never know whether it was for him or the patient. I did feel that when he passed me with his warm cup of tea, he had a proper smug look on his face.
This is the perceived racism I feel when faced with some health staff since the attack, stuff I didn’t notice before but now take more personally. The sly looks. The extra waiting. The not smiling back when you smile at them. I’m more wary now, that is sad. I used to just accept it but now I cannot help but question if I am waiting longer because of my name or something else I cannot control.
I was coughing pretty much constantly by the time they opened the door, and the patient came out. I was in at 9.50am and was not in a great frame of mind. The tea man introduced himself, as the radiographer and then started to question my unsuitability claim for the contrast dye.
Back in March 2019 I had an MRI and I had contrast. It was awful and the burning didn’t stop for a month. A blood test, taken in A&E in April, showed my kidneys were showing signs of damage. The doctor told me to stop drinking alcohol rather than listen to me (and my daughter) that it was the contrast dye. I don’t drink alcohol. Not all white people like it. It is water usually in my wine glass so that I look like I’m joining in.
I did my own research and found out that people who have undergone lots of surgical procedures may not be suitable for the dye. The burning I was feeling was at the areas where they’d cut into my body at previous occasions and operations. The ions in the dye tend to group together in these areas which can cause burning sensations and pain. I don’t know why it affects the kidneys.
The MRI scan last year had taken over an hour and I’d eventually asked for it to finish as I couldn’t lie on the bench any longer. The report came back as everything okay. They didn’t note my lung disease, the TVT mesh, my leaky heart valve or the rectum staples. The only thing they noted was that I didn’t have a womb, but my referral letter had said I’d had a hysterectomy.
I thought they’d gotten me muddled with another patient, but this was all at Watford last year, now I was at Luton. Different time, different location and hopefully a different outcome.
I hand Mr tea radiographer man, the forms which they’d sent me. These are forms giving consent for use of the dye and for consent for the images to be used in research and the blood request forms.
He looked a bit annoyed.
On the forms I’d written I consented for diagnostic purposes only and not the contrast injection as I have a compromised immune response issue adding it is not suitable for me. And I signed it.
Clearly, I wanted the normal CT scan and as I had already phoned up them about it, I didn’t see why I needed to justify it again to an arrogant radiographer who obviously thought I was doing it just to annoy him. He came around from behind his glass screen.
“Who said you can’t have the contrast?”
“I did” was my response and I went on to tell him what had happened, but he waved his hand at me and went back to his little booth…he shouted,
“Which hospital did you have the MRI at?”
I replied and then watched him call Watford General. I look at him and I’m thinking…WTF. If he thinks for a moment, he can bully me into something which I know will hurt me he is sadly mistaken, and I start putting my coat back on.
I can hear him on the phone…”yeah, Samantha Harris, says she had a reaction to the dye….”
I catch the eye of the female nurse helping him. I tell her silently mouthing the words…”I’m going to go now as I’m not having the dye.”
I start to stand up as he isn’t listening…he is not listening to me at all. I’ve not had the blood tests to show that my kidneys are fine for the contrast dye. I’d had this at WGH, and it had come back okay. It obviously was not okay otherwise my kidneys would not have looked like a heavy drinkers a month after the scan.
He marches over to me and gives me the forms, releasing them just before I get my hand to them.
“You may as well have these back then.” He states as they fall down on floor near my feet.
He returns to the glass screen booth and the nurse introduces herself and helps me get up on the bench. I coughed a lot. I managed to lie still for the few seconds it takes to take the scan. I’m told I can go home as soon as I am dressed.
I make my way back to the car. I pour myself a cup of tea and cry. I then realise I’ve forgotten to get all the blood tests the consultant wanted done. I cry a bit more. I’m too tired to go back into the hospital, I drive home carefully and fall asleep until the next day.
I almost cried when the blood clinic nurse put the needle in my arm for the blood tests. It was nothing to do with her technique, it’s obviously me.
I think this shows that I am a baby. My pain threshold must be exceptionally low to be almost on the ceiling for a little blood being taken.
To me, this has to be a good sign.
Now it’s a waiting game.
I find out on Thursday afternoon what the colorectal consultant thinks about my sore behind…she is called Dr Brown. Bless her.