November Update Continued..
First things first I just want to thank everyone for the kind messages of support. Its very humbling and heartwarming to know I have the support of so many people. It would be mean to not update you after my last post. My folks and I visited UCLH yesterday and left feeling better about this situation than we did before. Firstly its a great hospital and the Macmillan Cancer Centre is very clean, modern and calming. Everything a hospital should be. It also provides care just for cancer patients, so its quiet. We checked into a hotel the night before and met a few mates for dinner. I then spent the evening looking up at tall buildings and shiny stuff. Annoyingly I had no appetite and felt restless so walking around was a welcome distraction. I always look forward to all the different foodie places when visiting usually.
When I walked into the hospital reception I knew instantly it was better. There was a cardboard cut out of some Saracens rugby players, and I thought “I like rugby, this is my kinda place!”. The oncologist was fantastic and spent over an hour going through everything. She is South African so I assumed she would be in a bad mood after Italy beat the Boks, but she was very smiley. She had been over my notes but wanted to hear my story from the start and then asked me my understanding of what I was facing. I said we were told from the start it was always going to be tough and there would be less than 10% chance of beating it but I chose to ignore that statistic from the off. She gave me a kinda nod and said they would prolong my life as long as possible. I also told her no matter what I’m always going to aim to beat this. The trial we were initially told about is now closed, there is only 3 people on it. Bit this isn’t bad. She called it more of an ‘experiment’ than a trial. Its phase 1 so they don’t know much about the drug other than what they have found out on animals, which isn’t a nice thought either. Its the first trials on humans so they are using a very very low dose.
There are still 2 conventional chemo’s to try which we were not aware of. One is a combination of two drugs and the other is a higher dose of a drug I’ve already had called Ifosfamide, but this time its on its own instead of used alongside other drugs. We all decided to start off with the Ifosfamide. The reason being is its more aggressive so its best to do it now, as if I get any weaker it might not be possible. Last time I had about 9g I think, and this time it will be 14g administered over 2 weeks. What was new to me is that I will have to carry a small bag around with me 24/7 for 2 weeks, with a line hooked up to my chest port. Its going to be a massive ball ache, especially in bed and I have to bath one handed now, instead of showers. But this also means I wont need to stay in hospital, which is a big bonus. Day to day, the way my life is at the moment, it wont affect me much. I saw a guy in hospital wearing one I think. Its like a little man bag or ‘drug dealer guy at a festival’ bag, although you don’t want to take these drugs!
Im starting a two week course this Friday, after another base line scan on Thursday. Ill have a two week gap before a second round, and then a progress scan. Its good things are happening fast as its starting to feel like I’ve got a liver full of tumour, and the pain is a constant reminder.
Whats really good is the fact I’m strong enough to have this chemo after so long. The Dr said Im only able to have this because my blood counts, renal and liver function are still good, which is fucking brilliant! (Touch wood this continues) Now, usually I would take that great news for granted but after such a rough ride I’m celebrating every little bit of good health. So high-five to being healthy…other than advanced cancer of course.
My mum pulled out a folder full of research from her handbag and started quizzing the Dr on it all. The Dr was really helpful and explained so much more to us about the nature of the disease and the various research happening around the world, not that we didn’t know a lot from our own research already. My new oncologist is fantastic, and my old one was also very good but they are so different. Whats obvious from this move is we all needed a change in direction. Its been reaffirmed how important it is to do your own research. Knowledge is power, and not only helps practically but also lets you know that you are doing everything you can.
1 Comment
Thanks for the up date Julian ,it’s so good to know you are in a better place .
November 23, 2016 at 8:48 amFriday will soon be here,& here’s hoping the two weeks that follow will fly by .
I’m getting a facial done by phoebe (Bert ) at midday lucky me .!!!!
Bye for now .
Mary