After a really rough day on Monday I didn't think I would make Leicester to see Prof Fennell, I had visions of my body splitting open and my organs being crushed as the fluid inside me got bigger and heavier. Some how or some one was watching over me, I didn't feel great yesterday morning, too much morphine had me feeling rather sick, but we got to Leicester and waited patiently for Prof Fennell to see me. At one point in the car I thought we would need to turn around but no we arrived and Liz gave a cheery wave as we walked along the corridor. She looked different again and as usual I didn't recognise her!
As true to specialists go, he was running around an hour late, Liz was actually working the clinic so we weren't able to sit and chat like the last time I was here but nevertheless it was great to keep catching snippets in between.
Our time came, in hubby and I went, Prof Fennell is such a quiet spoken doctor but his welcome was warm and I thought filled with sincerity. He asked what he could do and I explained the situation, how the re-challenging of Alimta had done wonders but now that the meso was back no treatment was offered. I told them about the ascites, and how the hospital had discharged me without relieving me of the fluid and how I had gone private to ensure I had it done. I told him the drain was being fitted on Thursday, keeping my fingers crossed this wasn't going to be an issue.
I thought the ascities would put Prof Fennell off and he would say no there's nothing he could offer, but he didn't. It was like ascities didn't exist, but as Liz said later, they see quite a lot of it. He never said to me Quality over Quantity, or go and put your house in order. He discussed some chemo therapies and the various trails that are coming to the UK, the gene coding that is now being done at the Royal Marsden to help ensure you get on a trial that suits your cancer. Then it was right we'll start with this chemo first, you'll know if it isn't working as the fluid will keep building up!
How simple was that? He is going to write to the oncologist to say start me on Vinorelbine tablet form. So not even any nasty needles! I asked what happens if the oncologist won't do it, he said contact Liz and we will do it from here. "We just don't want to make you travel its crazy when you can have the same thing at home." Crazy as it sounds but my onco won't give me anything at home! He even said we can have a go with a further two chemo's but lets try this one first. Even the fact I had a reaction to the carbo didn't make him blink.
I also found out the true meaning of linage of chemotherapy. If you have Alimta and Carbo twice you have had only 1st line chemotherapy, if you have had Alimta and Carbo then Venorelbine that is 2nd line chemotherapy. I am not sure what it is called if you swap carbo for cisplatin I would think that would be a change of line too. Funny I always thought it was the number of chemo's we had had. So for me I have only had first line chemotherapy although I have rechallenged it twice.
My husband was in a state of shock nearly all the way home. He can't understand how Prof Fennell could say we'll give this a go until we don't get a result, when we had to fight tooth and nail for chemo last year at Bishop and then this year be refused. The difference in health care is bigger than he thought. Even Newcastle aren't as willing to play. Although if I decided to do a trial, I would prefer to do a trial in Leicester or Royal Marsden or St Barts than Newcastle as they don't do meso specific. I don't mind trying a trial as long as it is for our cancer and then if I deteriorate I can still have some form of treatment.
Liz had also arranged an appointment to speak with their pain management but as we were running late they had left for the day. We discussed ideas and she said my best option was to find a Pain Consultant. The length of time I have been on MST and the high quantities I have taken over the years kind of makes me a bit more knowledgeable than most Macmillan nurses. She mentioned that operation where they slice the nerves to stop pain and also said that changing MST to a different make could also change the way the pain is managed.
I hope that I will be able to get in touch with Dr Nicholson at James Cook tomorrow, I saw him in 04 when first diagnosed but he left. He is now back so fingers crossed there.
We were shattered when we got home, just before 8 pm, fed the dogs and had something to eat ourselves.
I've had a terrible night, my stomach is now heavier than the last time, although it doesn't look so big outwardly, the fluid has found gaps everywhere and even gone sideways etc. I got on the scales 9.8lb, am the same weight as last time I had 5.2 litres inside. I was the same weight April 2012 when I went to Leicester, although then it was healthy flesh not 8lbs of fluid.
I have thrown up again this morning, bile, I did this before the drain was inserted time before last. I hope I can last one more day otherwise Gary will be taking me to A and E at James Cook. I do want to hold back because I am frightened they don't put the drain in without ultra sound. I know my friends on face book will tell me to go to A&E but holding out one more day is better for me. hopefully, in the long run. Having the correct drain inside is important together with ensuring it is positioned in the right place. Plus if I went A&E I would probably have to wait until tomorrow anyway.
Hope has been restored in our household, I remember saying to Prof Fennell it's alright putting a drain in and looking after the symptoms but I need to stop what is causing the symptoms. He totally agreed, I am still totally in shock.
Chemo is a hard master, it can be terrible to tolerate and even cost you your life but to have it never offered when you are strong or willing to do it is not anyone's decision surely but your own. We have a light at the end of the tunnel, and not just Plan A but there will be a Plan B and a Plan C. Over the next couple of days things are being set in motion. Part of my biopsy will be required for testing, letters written to oncologists and I can breath again, knowing that I may not be looking at arranging my final funeral details before Christmas 2013.
I want to say thanks here too, I was overwhelmed at the many messages that I had, although quite a few telling me I should be at A&E (which I would agree), overall the love and support given. People underestimate the power of the word or the feeling that others supporting you can do for you. I can't promise I won't moan about the pain of the drain until it settles down but I can promise one thing, I will be looking to a future, one that had been denied me a couple of months ago.
Now catch up on my fellow bloggers, Lou is still facing chemo, Mavis has finished her 4th line, Steve is out of hospital, Linda & Steve are planning all kinds of things, Tess has achieved another target and Amanda is supporting her husband but I can tell is worried.
I am going to sit on the sofa and try and catch up with sleep, getting comfortable is the problem but at least I can smile again.