Time to Glow

Previous posts in this story can be found here.

Part 1, Part 2, Part 3, Part 4

As well as the public Facebook group Beat It.

March 13th and it was time to deal with this cancer once and for all.
I had been to the hospital the two previous days for thyrogen injections and blood tests. To be honest this was a bit of a joke. When I turned up the first day, they had none of my notes, so had no idea what I was doing there, although on quick inspection, at my guidance, in the fridge was my thyrogen injection, with my name, address, and date of birth printed on it. But they couldn’t give it to me as they needed the doctor signed prescription which was in my notes.
This took the only nurse working on the ward, off for an hour to find a willing doctor who was able to write the prescription for her, for a patient he has never, and will never likely meet.
It’s a bit of a joke, but I knew this wasn’t a perfect system so just let it ride. I certainly did not add pressure to the nurses or other NHS staff, these guys have it hard enough.
What was supposed to be 5 minutes turned into 2 hours, but it was done.
Back on the Monday for much the same as well as the admission process. This gets complicated quickly. As i’m about to be locked in a room for many days on my own, they need to be sure I can care for myself. Many, many questions later, another injection (which really hurt by the way), a quick blood deposit, and I was all setup for the next day, so it’s home to pack.
That night I slept like a log, which was unexpected. But now I was very much a passenger, had been through all the hurdles, and finally it was all about to happen. This was different from the recent surgeries i’d had. Mentally, dealing with physical injury seemed normal, but being blasted with radiation was just plain weird. I was always going to recover from the surgery, I just had to let my body repair itself like every other time I’ve been injured, but radiation….. god only knows, so why worry. It was out of my hands, and I just had to get it done, so I did.
On March 13th at 9AM I was in the quiet room at Southend hospital. I had been pre-briefed so had my expectations set. I was to be admitted at 9:30, Claire would drop me off and take my belongings home, and I would get locked in the nuclear suite with the limited items I was allowed to bring, I would take the capsule, and then sit it out whilst the radiation levels decreased. This process could take anywhere from 4 to 8 days to happen, but I was adamant I was going to be out for the weekend and would do everything needed to ensure that was the case. If it dragged over into the weekend then I wouldn’t get discharged until Monday as there was no doctor working over the weekend to discharge me.
It didn’t start well. First of all, my notes were still missing, and there was someone else in my room. The ward are so low on beds, that as soon as the room became free they put another patient in there. They vacated that morning but then a specialist team have to come and prepare the room for my arrival. By 3PM they had finally found my notes which had details of the dosage, so now they could verify the capsule they had been delivered was correct. The room had been prepared, which basically means that cling film had been put over most parts of the room that I was liable to come into contact with, and absorption matts put on the floor to catch any moisture I would produce. All very clinical.
Then the nuclear nurse was there quickly with a large white pot which contained radioactive iodine.
THE SCIENCE BIT
I have a papillary cancer which is a mutation of existing cells caused by exposure to radiation. Therefore, these cells still have the abilities of the original host cells, in my case, thyroid tissue. Your thyroid metabolises iodine and turns it in Thyrogen. By removing my thyroid, and putting me on a low iodine diet, and then pumping me full of radioactive iodine, any cancer cells in my body would grab this new source of iodine, and attempt to metabolise it. As I have no thyroid tissue left in my body, the cancer cells are the only cells left which uses iodine so there is no competition and the fact that it is radioactive means it will damage the cells and my body would do what it normally does with damaged cells, remove them from my body as quickly as possible, and therefore remove the cancer. The dosage of radiation is carefully prescribed to ensure it is strong enough to damage the cells, but not too strong to cause further mutations, although this is a grey area, and can’t be guaranteed. Therefore one of the side effects of this whole process, is my increased chances of secondary cancers, therefore I am now on a lifetime monitoring programme to try and spot these as early as possible should they occur. This can take anywhere from 5 to 25 years to happen, if at all.

I am a bit nervous taking the capsule. About the size of a paracetamol, it’s not difficult to take, but you have to be very careful. If you look at it for too long, your eyes can become effected as they are very sensitive to radiation, and you go blind! I also hadn’t eaten most the day to ensure I absorb it as quickly as possible, you don’t want it in your stomach for any long period as the radiation would damage my stomach. I need it broken down and whizzing around in my blood as quickly as possible.
Oh, I also need to be very careful not to throw up. Cleaning up a radioactive spill is not what the nurses wanted on their hands, and it would also mean I would be going home until I could get scheduled again. The pressure was on, but it went down without a problem. As soon as it’s in, you can get to work on getting it out, and there is only one way this happens, by drinking lots and flushing it all out. This process takes 4–8 days, I was already 6 hours behind due to the delay, and me getting out on Friday wasn’t looking likely, I would have to work super hard. The challenge had been set and I was off, locked in a 4 x 2 meter room on my own until my levels has got back to safe levels. No physical human contact, no leaving the room, just sit tight and drink water. So that what I did.

Doing a stretch
I had no idea how I was going to react to the time ahead of me. I had clearly done nothing like this before. I was about to be locked in a room, on my own, with no physical human contact, until my radiation levels dropped back to safe levels. This could take between 4–8 days. I couldn’t even look out of the window as it was so high up, to avoid anyone walking past my window and getting blasted by the radiation. The walls were thick concrete and lead lined, as were the doors. There was little chance of phone signal or WiFi working, so the room was equipped with a land line and a TV. Rather than come in the room, the nurses would phone me to take meal orders and check in on me on occasions, but that was all.
It was 3:30PM on Tuesday 13th March, I had swallowed the radioactive iodine capsule and I had started to drink as much water as possible. It was going down by the litre. I felt really weird, apart from being a little queezy, physically I was fine, but I could almost feel the radiation coming off of me, and I didn’t want to touch anything and make it radioactive. So I stood in the middle of the room, with a book my mum had given me, and read for the next 3 hours, and drank. It was completely pointless, the clues in the name, radiation radiates, so everything in the room within about a 3 meter radius, was getting a pretty good lick of radiation right now. I had a brief visit from the nuclear nurse at 4PM. There is a protocol for when the nurses needed to get in the room. They would knock on the door, wait for me to move into the bathroom, which was over 3 meters from the main door, i’d call “come in” and they would open the main door. On this occasion it was Frank, the nuclear nurse armed with a Geiger counter to take a baseline radiation measurement. All I saw was his hand come from behind the door armed with a small device which he pointed in my general direction, and he took a reading. It was 3000 microSieverts, which is what he was expecting.
To put this into perspective, if you point a Geiger counter at yourself today, you may get a reading of around 10 microSieverts. I had a long way to go!!
At around 7pm dinner came. I assumed the position by the toilet door, whilst another hand appeared around my door with a tray. There is a shelf right next to the door which they put the tray on, and quickly go. They do not hang around!!!
I had been warned of the quality of the food, and sure enough, it was bad. Edible, but only just. That didn’t help, but I was really hungry not having eaten now since the slice of toast I had had at 7am, I got stuck in.
Then I settled in for the evening. I now allowed myself to sit in the only chair in the room (covered in clingfilm) and watched a DVD on the 7 inch tablet my friend Lee had given me. Tonight’s entertainment, The Martian — a story of a man isolated on Mars. Seemed quite fitting. After the movie finished, I did all of my washing up, nothing was allowed to leave the room once it was in there, so I had to ensure it was all clean otherwise things would soon start to smell.
I also had to have at least 2 showers a day. The radiation would be coming out in my sweat, so I had to wash myself repeatedly to get it off. A quick shower then into the hospital bed to see if I could sleep.
I couldn’t.
The ward I was on was a busy one. There was a room just up from me with a man who had lung cancer and was on chemotherapy. His cough could wake the dead, and it was constant, all through the night. I couldn’t get angry about this, the poor guy was going through hell. there was also a lady on the ward who had mental health issues, and also had cancer. She would scream out every now and then thinking the staff were attacking her. Again. I couldn’t get angry or frustrated, imagine having to live like that. The poor woman. I could hear all these noises going on around me and the staff were kept busy all night long. It was going to be a long night.
I did doze off around midnight, but was back up at 3. There I lay till 5. I then made a big mistake. I got up and kicked off my day. By 7 AM I had done some yoga, done some exercise, had my shower, ordered my food for the day, had breakfast, and was starting a new chapter on my book. I was moving at normal Glen speed, which is fast, get stuff done. At the time I didn’t realise, but this was about to be the longest day ever.
Sure enough, by 3 PM I felt like I had been awake for ever. I had watched ‘Behind enemy lines’ the story of a man isolated in enemy territory, seemed fitting. I had also read a few hundred pages of my book, finished a few magasines… basically, I had consumed around half of the entertainment I had brought with me, and I was only a few hours into my second day. I had to slow down.
Like any problem I face, I try and break it down into small digestible chunks. I did this to my day. I took inspiration from Huge Grant in ‘About a boy’, a man whos retired early on in life, and now breaks his day down into hourly units. Play video games, 1 unit, watch a movie, 2 units etc. I created a quick list of things I could do, allocated units to them, looked at the time I had left (expecting to get out this Friday) and rationed myself to an amount of units of activity a day. The rest of the time could be spent watching some rubbish tv or trying to sleep.
Immediately my pace slowed and I got things under control.
At 4:30PM Frank arrived with the Geiger counter. I had been looking forward to this all day. My first indication of my radiation levels and what sort of chance I would have of getting out on Friday. I was still drinking water almost constantly, and had turned myself into a human water fountain. I was almost constantly in the bathroom.
His hand shot around from behind the door and took the reading. I had lost 80% of my radiation and I was down to 600 microSieverts. Yay, I was delighted, this sounded great.
It wasn’t.
You’re supposed to lose over 90% of it within the first 24 hours, my body was holding onto it. At this rate, my chances of getting out on Friday were 50/50. This was a bit of a blow, and all I could do was carry on and see how it went.
That evening I watched ‘Castaway’ The story of a man isolated on a desert island. It seemed fitting.
That night I slept a bit better. The ward wasn’t as noisy, and I was dead tired. I went off around 11PM, and woke up at 5. This time, learning from my previous mistake, I stayed in bed. I’m not one for laying around in bed, as soon as I wake, i’m up and getting on, so this was more difficult than it sounds. I sat there till 9 when breakfast arrived, then read my book, did some yoga and exercise, had my shower, boom, it was midday. By doing very little I had burnt a whole half a day. My plan was working. On I went.
That afternoon I watched ‘Black Hawk Down’ the story of a team isolated in enemy territory. It seemed fitting.
Frank arrived at 4, I was nervous. He took the reading, I was at 180 microSieverts. That was the magic number. I was going home tomorrow!!! I was so happy and relieved. The thought of spending two more days in this room were pretty depressing, although now I was my stride, and this was getting easy, but I was keen to see my family.
To celebrate, my wife went and fetched me a Chinese takeaway, brought it down to the ward, and I got to enjoy a lovely meal. She even put a little note on each of the containers (see photo). I was walking on air.
Not much sleep that night, but I stayed in bed till 7 then got on with my routine. At 9 they were coming for me to have a full body scan. For this they use a Gamma Camera, which is a table you lay on that slides you slowly under a camera which measures your radiation levels in your body, and also where it is. This would confirm if I was going home that day. For the first time i was allowed out of the room and a brief walk down the corridor to the camera room.
It came back with a low ready, result. The discharge process would commence. I was delighted. Back to the room to throw everything in the bin and wait. The bin was actually a yellow sack with large black hazmat signs all over it.
It was 2 PM before the paper work had been completed and I was out.
Walking out of that room felt weird, but lovely. On getting home, I immediately went for a walk down by the beach and just breathed in the air around me. I was a free man… sort of.
I’m now under a restricted movement plan, which means I can’t spend too long in the company of others. This is only for a short while, allowing any remaining radiation to dissipate.
Very soon things will be back to normal and I will no longer glow in the dark.
Keeping my son and wife at arms length is difficult, but necessary. A quick hug and kiss, and i’m off to the other side of the room.
Next step is to start the monitoring process. I’ll be back in 4 weeks time for another full body scan, as well as kicking off the blood test, to detect for any signs of the cancer. If the radiotherapy hasn’t worked, I may need to do it again, or have another type of treatment, but the chances of that are very slim, but we’ll just see.

People have asked me a lot of the same questions which i’ll answer here.

Did it hurt or did I feel weird?
No. I did get some weird pins and needles sensation in my body, but I actually think that was psychological and my mind playing tricks on me, or due to the large amount of sitting around I did.

Did my wee come out a different colour?
No. Although the amount of water I was drinking meant that it came out clear as a mountain stream.

How do I feel now?
Fine, just need to catch up on sleep, get some nutrients back in my body as I’ve washed most of that out. Feeling a bit light-headed and lethargic but that’s all.

What are the restrictions i’m under?
The radiation reading was so low on Friday that they put me under a very light restriction. Basically, keep clear of most people for 24 hours (till Saturday morning), then just avoid prolonged exposure (8 hours or so) until the end of the month, so avoid long flights, sitting in an office next to the same people all day, that sort of thing. I must avoid babies and pregnant women until April.

Next stop, back to the oncologist to see how the treatment went and find out my next steps. But more importantly, to get back out there and enjoy life to the full.

Next chapter https://medium.com/@glenprobinson/patience-7a127276d99

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