I know that when I get home I will probably want to write a novel about what happened during my recent visit to the USA. I was going to wait until I got home to start but as the airport has a computer and I have several hours to spare I thought I may as well start now. During the last 10 days I have been through seer panic attacks, highs and lows but at least I am returning with less cancer cells than when I arrived.
I also didn't realise how the death of my mam had affected me until the day we were flying from London out here. The adrenaline that cruised through my veins was terrifying and I was unable to settle. When we boarded the plane I partly wanted to step straight off. We arrived here on the Sunday and I had the worst sore throat I had had in years, my nose was blocked and I feared a chest infection taking over. To make matters worse the weather wasn't that great either so the story I had told myself about it being a holiday went straight out of the window.
The Monday morning Gary and I went down for Breakfast but I just couldn't settle, my insides were in turmoil and I worried about whether I was doing the right thing. I felt like if I turned around and came home I would be letting everyone down, was it me pushing myself for treatment or was it the fact that everyone around me seems to expect me to keep going and if one thing fails then it is my duty to do something else. We went over the UCLA and met Fereidoun. Instead of spending time closed in his office/reading room we went out into the court yard and had a coffee. I told him I was nervous and full of cold, he said I had nothing to be nervous about and over the last 12 months they had done over 55 procedures and had managed to get the sedation etc right. It was great to see him again and he also mentioned wanting me to meet the famous Dr Cameron. We decided to go and pay for the treatment then rather than have something go wrong in the morning, I had settled myself down and started to feel a whole load better.
We went down to the reception area and said we were there to pay for the treatment the next day, she pulled up our file and didn't look at us, instead she directed us to another department in another building on the complex. On arriving at this other building we were told that we owed thousands of dollars from previous years and that if we didn't pay we couldn't get tomorrow's treatment. After several hours of phone calls between several different offices they agreed to honour the price quoted and that my treatment on Tuesday could go ahead. They quoted something like the procedure should cost us $50,000 which is absolutely bizaar.
That night I was again an emotional mess, never have I felt like this, I couldn't sleep and just wanted someone to say this is the right decision, you will feel better, it will work and hey you are losing billions of cancer cells. I was worried about the thickening, and decided that I will defer any treatment, after all this is the 9th line of treatment in less than 6 years and although surgery was 2 years ago I need a break. The pain hasn't got better and what am I doing with my life, chasing down the meso instead of enjoying the time I have. That was my decision on Monday night - no more for a long time......
Tuesday we arrived about 5.30 and checked in. The nurse was marvellous and needles went in without any problems. I was wheeled down for the procedure at 7.45 and had my first CT scan by 8. Fereidoun said he had suffered at the hands of the admin department and that he was not allowed to treat me further unless I went through International (a way to make more money for the hospital - rather than treat a patient) so instead of doing his proposed plan of one procedure every 5 days he was going to do 4 tumours all at once.
His team started by numbing my left breast, the needle for that was painful, having lost so much weight he was hitting bits of grizzle and of course rubbery muscle. I was fine though and had no problems with the sedation or the probes. At 10 they were turning me for the ones into my back, this is where I went off the deep end. I started having crazy hallucinations about time and eternity and that life was being replayed like groundhog day but it was around a 10 minute event that was speeding up everytime it replayed in my head. I think (Fereidoun is to polite and confidential to tell me what I actually did) I was swearing and calling everyone F*** B**tards and that they had to stop, I also remember kicking my legs behind me trying to pull out one of the probes (been there before!).
I can't remember the first time they tried to bring me back from the drugs but the second time Fereidoun kept asking me if I knew who he was ... I couldn't get warm and I wanted this nightmare to end. I remember begging the nurse to take away whatever it was they had put into me as it was driving me mad. I was told later that I didn't know who anyone was and I was in a really bad way. They had to push the limit on the drugs to calm me down and then reverse them asap to get them out of my system ... cold turkey big way comes to mind.
I was finally admitted onto the recovery ward (guess I was still swearing for quite a while) and a nurse called George took charge of me. He tried to ask how I felt but I couldn't verbalise the feelings very well, I said it was like adrenaline but 30 times worse pushing through the body. He told me (in no uncertain terms and in the voice of a school teacher) to lie down and sleep. I awoke around 3pm and felt warm. They had put socks on my toes to help keep me warm and every 20 minutes they had been changing the blankets to warm ones. Its amazing they heat all the covers up in a big oven!
Gary was finally allowed to join me and I just wanted to sleep, but this was a problem as my bp was crashing, I was unable to get it over 80 and at some points it had been 72 over 53 I believe. The Xrays showed that no damage had been done to the lung but I still wasn't allowed any water, my mouth was dry then I remembered being sick and bringing up blood, I did the same again before going back to sleep. I was in and out of consciousness until about 6pm and had another xray. The nurse fed me water, an ice lolly and a yogurt, all with the hope of getting me going. Blood pressure did reach 103 at one point but then dipped back into the 90's yet again. At 7.30 Fereidoun came to tell me that the procedure had been a great success, I was sheepish and apologised for any terrible behaviour that I may have displayed, he laughed it off, but I am still embarrassed. He released us from hospital but said anything happens to check straight into A&E. We arrived back at the hotel room and I went to bed.
Enough for now, I will carry on when I get home. I am still not sure where my feelings are and in what direction I want to go all I know for sure is that I can't wait to step through our own front door and collapse on the sofa with the mutts. Just wish the flight didn't take so long and combine that with airport time and connections we will be travelling for around 18 hours! Ever wish we could say "beam me up scottie"
A lost meso warrior at the moment