This day couldn't have come soon enough, up, showered, hair washed, dressed and looking good. My morning routine is coming back, albeit slowly as we drain now before I shower apart from District Nurse day.
We set off for the Bobby Robson Cancer Clinic at 10.45, giving us time for traffic hold ups on the a1m. My 2nd grip out in gosh I can't remember when! I was nervous, too many what ifs in my brain to settle. Our appointment was noon, but we arrived a good 30. Minutes early, we just waited in the waiting area, no cup of tea just both of us in our own thoughts. Running late Dr Hughes called my name and off we went to the consulting room. I was quite surprised at the thickness of my file at Newcastle because I have only had radiotherapy here prior.
His sentiments were sincere when he said mI don't know whether it is nice to see you again, we both knew I wouldn't be there if the cancer had behaved itself. We were straight down to business's, he doesn't need my history as I first met Dr Hughes when I was first diagnosed, he was running the trial for Alimta and Carbo back from 99 to 2004, my oncologist from James Cook, Dr Storey, had sent me to see him because I was so young and wanted him to recheck the histology of my tumours. I didn't meet Dr Hughes again until 2007 when I had Alimta the second time and he stayed as my oncologist until he gave up his private practice in 2011.
We talked about the spread to my abdomen and he told me that I am still a rare person, always been different to other mesothelioma patients and with me to expect the unexpected at every turn. He said that living this long it is difficult to determine what the cancer will do next, he also thinks due to the weak diaphragm my meso came from the left lung and is the same strain.
I answered his questions about how much fluid was drained daily, if I felt ill etc, although I didn't tell him everything that is going, the problems with my toilet issues or the fluid that has appeared in my left foot. He talked about Vinerolbene and how back when Alimta was being trailed this Chemo was on trial in another study vs supportive care but not many people entered the trial due to the Alimta one taking place. He also believes vinerolbene has a place for fighting mesothelioma.
The surprise was evident that such a low dose of alimta last November had done so much damage to the mesothelioma that he said we would go in low again. After all I looked so healthy in 04 that the side effects experienced by Alimta had shocked him, he thought it would be a walk in the park for me, instead he told me I was the illest person he had ever had when put on chemo. Then when he did it again in 07 and nearly killed me he thought never gain.
I was weighted, I prefer old money, so was 8.12, not bad as I look a lot thinner although my height has lost an inch and a half, I'm now 5'7". Bloods taken and consent note done, I will receive an appointment for my first chemo in the post, he expects it to be the week after next.
Home for lunch, late lunch then off to see Jason. He couldn't believe how much weight I have lost since he last saw me. He manipulated my back then worked on my shoulder.
I peed without pain last night, so happy but will have to see how this goes. My back is extremely sore this morning, one muscle is agony so need to be careful sitting back.
I am shattered today, I had planned on a baking day but so far I have only managed to drain, it's noon and I still haven't showered. I feel like I want to curl up on the sofa and sleep, maybe that's a good thing as my body must be telling me something!
I am worried about starting treatment again, what if I am really ill and I do lose what little quality I do have for the chemo not to work? I know this chemo didn't help my friend Danny, but I do know it is helping 2 others at the moment. Our minds are never free of the worry which cancer brings. Are we doing the right thing? Should we just stop treatments? How long is that piece of string? My quality won't improve u til I get the cancer under control, will the chemo manage this, it is a risk, one that many take every day of their lives.
I need energy, that is one thing I can't seem to get. I need weight on, which in turn will help stop the breathlessness, I need to eat but my body/brain seems to be anti food at the moment! How do you force yourself to eat when you just can't eat much? My friend Leslie became like this, it started 3 months before she died, I really don't want to die!
I know in my heart I have these days and they do pass but I always worry in case they don't. I want to be brighter and energetic not a couch potato with the energy of a slug. On this cheery note I will close here. A day of gathering strength and relaxing seems on the agenda for me.