Monday 26 November 2012

Another day, another scan!

Four days ago, when I woke-up at around 9:30am, the first thought that crossed my mind was: I'm thirsty! So, I looked-over at the bedside table, saw a half-full (I'm an optimist) glass of Pepsi and was just about to drink it when I remembered that I had to set-off for a PET scan in an hour or so. As you may remember from an earlier post, you are not allowed to eat or drink anything except water within six hours of a PET scan, so my thirst was going to have to wait until I went downstairs.

As it happens, I live in a three storey townhouse, where my bedroom is on the top floor and the kitchen is on the bottom floor, so being thirsty was never going to beat the desire to avoid going up and down two lots of stairs. With that in mind, I went about the first part of my usual morning routine, whilst constantly reminding myself not to drink the Pepsi, as I could just imagine drinking it without thinking, e.g. to help swallow the daily co-trimoxazole tablet; I was still allowed to take that tablet, as it wasn't sugar-coated so wouldn't affect the PET scan.

After a few minutes, once I was finished on the top floor for the time being, I headed down to the kitchen with the half-full (I'm still an optimist) glass of Pepsi in-hand, and that's when I noticed a water-mark on the hallway ceiling! I'd seen such a water-mark previously, in the very same spot, after some particularly windy and rainy weather, but the roof had in theory been fixed since then - That seemed unlikely now though!

Despite the leaky roof, I carried-on down to the kitchen, put the Pepsi in the fridge for later, got a pint of water, and headed back up the stairs to continue getting ready. However, just as I was getting to the top of the stairs, I had a quick sip of the water only to find it was warm, so off I went back downstairs, got some fresh water, which was actually cold this time, and then carried on getting ready.

The day just wasn't off to a good start really: I'd woken-up thirsty, but wasn't allowed to drink the Pepsi I had to hand; I'd taken the daily co-trimoxazole tablet without any fluids, which tasted horrible and got stuck to my throat; I'd just found out that my roof was still leaking; and the first pint of water that I got to quench my first was warm! Considering I'd only been awake five minutes, it wasn't going well!

I did manage to get ready without any further incidents, but still ended-up arriving at the hospital a few minutes late, due to getting stuck in some unexpected traffic. I didn't think it would really matter though, as when I was given my appointment I was asked to get there thirty minutes early, so (still being an optimist) I just thought that I'm not quite as early as I should have been. However, as it turned-out, the appointment before mine had been cancelled earlier that morning, so rather than sitting in the waiting room for half an hour, I went straight through to getting ready for the PET scan, as they were waiting for me.

When walking by the entrance to the waiting room, I realised that I'd not quite drank as much water as is recommended, as I only had about two-thirds of a pint at home, and I wouldn't get the opportunity to drink any more now, as the water-cooler is in the waiting room. I normally drink very little fluids, but you're supposed to drink a pint or two of water within a couple of hours of the PET scan, so I had planned to drink a pint of water at home, followed by some more at the hospital; However, that plan went about as well as the rest of the morning had gone so far.

After going through my recent medical history with one of the team members operating the PET scanner, which I believe is only necessary as it is run by a third-party that doesn't have full access to my medical records, I had the radioactive tracer injected into my blood stream, before finally waiting about an hour to start the PET scan itself. As I mentioned in a previous post, you have to wait in a quiet room by yourself, as you need to do as little as possible; That allows the radioactive tracer to be absorbed by any cancerous cells, rather than the muscles in your arms and legs, for example, thereby lighting-up any remaining cancer to the PET scanner; Having said that, after about half an hour, I was asked to move into the room with the actual PET scanner in it, where I waited for the rest of the hour - I assume that was so they could begin preparing the next patient. Once the hour was up, I was guided to the toilet, as you're supposed to have an empty bladder when you have the PET scan itself, but given I'd not drank very much it proved to be a wasted journey.

Upon returning to the PET scanner room, the first thing that I noticed was that the bed that slides back and forth through the PET scanner had some kind of head constraint on it. Also, after the usual laying down on the bed, lowering my trousers so that the metal in the belt etc wouldn't get in the way of the PET scan, and having a cushion/rest placed under my legs, what seemed like a wide velcro constraint was fastened around my abdomen. Both of these constraints were new to me, but I assume they are just intended to reduce the potential for movement during the PET scan, as to get clear images it's important to stay still. I'm not sure how well the constraints work in reality though, as I felt more of a need to move than I normally do, just because it wasn't quite as comfortable when fastened in.

Shortly after the PET scan started, I heard one of the team members operating the PET scanner enter the room and start talking to me. I couldn't make out what was being said at first, but eventually I realised that I was being taken out of the PET scanner, as I needed to remove my t-shirt! It turned-out that there were a couple of small decorative metal buttons on the neckline; I'd never given this t-shirt any thought as I'd previously always kept other t-shirts on when having PET (and CT) scans, and unfortunately no-one else had noticed the metal buttons before I got into the PET scanner, but they were getting in the way, so the t-shirt had to come off. The tricky part was that, as I mentioned above, you're not supposed to move once the PET scan is started, hence all of the constraints, so I had to try to sit-up, remove my t-shirt, and lay back down in exactly the same position! I'm not quite sure how successful I was, but the rest of the PET scan seemed to go fairly quickly after that.

To say this PET scan didn't go quite as smoothly as the previous ones is perhaps a bit of an understatement, and after all of the fun and games that morning the optimist in me was starting to see the advantages of pessimism, but all of that aside hopefully the results themselves will be good! The third-party that performed the PET scan said that the results should be available within three to five days, but that in reality within two days is the norm, so as planned they should be discussed tomorrow by the medical team looking after my case, and then explained to me a few days later. I'll then finally know whether all of the money spent on the antibody treatment (Brentuximab Vedotin) was worth it, and what's next for me in my on-going battle with Hodgkin's Lymphoma!

Speaking of the antibody treatment, I don't seem to have been feeling as tired recently, so perhaps it was never actually to blame for that particular side effect, i.e. maybe it was the steroids that were resulting in me feeling tired, hence that side effect gradually faded away after I stopped taking them about three weeks ago. Having said that, I am definitely getting some peripheral sensory neuropathy now, which is a common side effect of the antibody treatment, as the ends of some of my fingers and toes do feel an odd combination of tingly, numb and tender at times. It's a good job that I'm not working, where I would be typing most of the day, as that would no doubt prove quite uncomfortable - for my fingers, not my toes!

In terms of what's next, I just need to wait for the PET scan results now, as a few hours after my previous post, i.e. where I mentioned all of the tests that needed to be performed in order to return to the hospital at Leeds to further discuss the possibility of an Allogeneic Stem Cell Transplant, I was informed that there was no need to perform the heart scan yet after all, as the doctor at the hospital in Leeds had previously only been provided with the results of the heart scan I had immediately prior to starting the treatment for the most recent relapse of the disease, which is not actually the latest heart scan that I've had - If I do proceed with having the Allogeneic Stem Cell Transplant, I will need to have another heart scan before doing so, but until that time the results from the latest one will do just fine.

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