The last two days have been different, yesterday, I spent getting myself mentally ready for RFA today, I have been nervous about it not knowing what to expect. Sam and I arrived at the Ibis hotel last night, yes the Ibis again, to find that they appeared not to have a room for us but eventually they did find one, by this time it was about 9.45pm, so just time enough really to find our room and then try to get some sleep. As you can imagine I had trouble sleeping last night and eventually at about 2am, I think, I managed to drift off to sleep, but I had to be awake by 6am as I had to have breakfast early because I was having a GA for the procedure.
We had to be in UCLH imaging for 11am even though my appointment wasn’t till 2pm, and as I wanted to go and have a look at a venue for the dinner before that we packed when we got back from breakfast and headed off towards Hyde Park. Instead of about 13 minutes it took us about an hour to get there, but it was worth it the venue looked great. Anyway that done, the specialist nurse had earlier suggested that I call her about 10am to see if everything was on time. I phoned her at 10 to be told that the first patient was quite complex and they were running late so suggested I call again at midday. We set off on our way back towards UCLH, making a couple of stops on the way, at midday as requested I phoned to be told that the second patient was being difficult could I phone back at 1pm. Several phone calls later and we arrived in imaging at 2pm, the specialist nurse came out to see us, we were then told that I probably wouldn’t be on the table until about 5pm, as you can imagine I wasn’t too happy!!
I had been up since about 5.30am so I could have breakfast, we were told several times to find somewhere to sit but stay in touch until they were ready, by 2pm I was exhausted, at this point we had a slightly heated discussion with the specialist nurse, she disappeared off to speak to someone else, at which point a nurse came out from the recovery room to say “I hadn’t been forgotten” and quickly found a bed for me to lie down on, thank goodness for that!!! Then the radiographer came out to speak to us, she appeared to have no understanding of my situation, at one point telling us that she wanted to get home on time tonight!! By that time I had started dozing off, a nurse came in and took the necessary readings, blood pressure etc and brought in the hospital gown, slippers and so on. So, there I was feeling even more nervous as the procedure was getting closer, at which point Dr Bandula the radiologist came in to say “I have bad news” we have a problem with our first patient and we have had to stop all procedures!!! ARGH!!!!!!!!!!
I was somewhat angry, annoyed, upset, disappointed all in one, he said that it would have to be rearranged, I asked how long, he said maybe 10 days to 2 weeks!!! All sorts went through my mind, thankfully Sam stepped in and asked “what if the tumours were growing quickly, would they be too big for RFA?” He said that they would get a CT scan done before I went, I wasn’t going to leave without the results of the scan and a new appointment date.
The problem for me at tis point being I had arranged to do things in the next two weeks, Teresa has two weeks off from her job and we were going to go to Paris possibly and a couple of other places. The Paris trip was either going to be fly to Paris and have a couple of days there or maybe drive and see some of the countryside and take a few days doing it. That has been a bit screwed up now, the CT scan was fine, but they made the new appointment for next Thursday, meaning that it would be difficult to do Paris by car before and afterwards, well who knows how I will feel, should I really go to France in the first week after the procedure? I was upset again, at this point in my life I really have no idea how long I have left and if you miss an opportunity to do something then it may not come around again.
I’m not sure what we will be doing by we will make a decision and go with it, whatever it is, I know that they are interventional oncologists, but I just had the feeling they really didn’t understand my position at all.
I now wait for next Thursday to see if it happens then, I hope so and I hope that there aren’t any problems!!! My pains are getting worse again, so I do wonder what is going on inside and I will have to see about upping the strength of my patch to try to get some relief. So the saga continues………..