I'm on the trial!

Today I had an appointment at Guildford hospital with my trial onc TC and my research nurse Avril. Avril told me that the bloods I had done last week were all within the range for the trial protocol and then she sent me off for an ECG.

I last had an ECG back in 2012 to check my heart was okay for chemo. This time I went in to the room, took off my tshirt, the lady conducting the ECG put about 8 sticky pads on me and attached clips to each of them. She turned on a machine, it beeped and less than thirty seconds later she took the pads off and gave me my printout.

We headed back upstairs and I gave my printout to Avril. We waited for about ten minutes and then were called into a room with Avril and TC. It was then I learnt that I'm on the trial! So although it's all very unknown and therefore scary, I'm on what TC says is "the best treatment on planet earth right now" for my kind of cancer. Thank you everyone who has had their fingers crossed since June 14th!

Unfortunately the results from last weeks scans weren't back, but based on my PET scan results TC was happy to go ahead. We asked him to go through the PET results in more detail, so I now know that (in addition to the lower lumbar region that I found out about last week), the bastard is also in one vertebrae higher up and my pelvis. At least this explains the pain. It does upset me as he originally told me it hadn't spread, however, TC said these mets may have been there all along and at the start of this shitty journey, I hadn't had a PET scan. I.e. The mets would not have been picked up on just a CT and bone scan, it needed the more detailed PET scan to spot the buggers. The other thing he mentioned was a slight "something" on my lung. This frightened the hell out of me. However, he said the PET scan shows cancer through cell activity taking up glucose and this 1p sized area was not doing that, which makes it unlikely to be cancer. So scarring from a previous infection or something similar. Obviously, having been dealt blow after blow, I want to believe what he says, but it is still scary. Now I'm on the trial, I will be monitored fastidiously, so if this area does turn out to be suspicious, at least I'm having scans etc that will keep an eye on it. TC said he wasn't concerned about it, I just have to trust him.

We then had to wait for over 2 hours for my meds to be dispensed. Apparently because its trial medication, it will always take this long. Eventually we got my drug stash and had another meeting with Avril. She went through how to take them and also gave me a tick chart to ensure I mark off having taken them every day. This really satisfies my Jo-CD. Lastly she gave me a card which I have to carry at all times. It contains details of my trial and important contact numbers. If you are ever with me and we have some sort of medical emergency, please ask for my card!

We then drove home and I took my first dose!

PET Scan

So today (one month on from receiving the dreadful news) I had to have a PET scan. That takes me to 8 appointments this week (5x rads, 2 x oncology appointments and this PET scan) at three different hospitals. I am absolutely exhausted, this is fatigue like I have never felt before. I cannot think straight or even string a sentence together. Typing this is probably a stupid idea. In fact, it definitely is. TBC after a sleep.....

It's amazing what a restorative sleep can do! Feel betterer enough to type and actually make sense!

So this morning I had to have a PET scan at Guildford so that there are baseline scans to compare things to if I get on the drugs trial. I had to fast for 6 hours before and drink a litre of water. We arrived at the imaging unit and I was taken in to the scanning area. There I was given a radioactive glucose injection in my arm and then had to lie down for an hour (no reading, no phone, no iPad) whilst the radioactive material worked its way round my body. After the hour I had to pee so I had an empty bladder and then was taken to the scanner. It was a bit like the CT scanner I'd seen before but more enclosed. I had to lie on a bed, arms above my head and not move. The scanner whirred around me and I moved through it. Half an hour later I was done. You don't feel anything whilst having it, just a bit claustrophobic. Then I had to pee again (they like you to get as much of the radioactivity out of you as possible) and I could leave. I'm not sure if I will actually get sight of any results from this or not, I suppose only if it brings any bad news of spread elsewhere. Whilst I am hoping beyond hope this is not the case, I am pretty convinced it's on the other side of my hip as this area is hurting very much at the moment. At least I know that if this is the case, I can have rads on it or the upcoming systemic treatment (whatever that may be) would get it. At least I'm in the system now.