Soooooooo, it's been a while.
Alas the news is not good and progression on my liver is abundant, over 12 new lesions, thickening of the omentum inline with omental disease and a good dose of moderate malignant ascites for all of my organs to swim about in. Bony met has become 'bony mets' on the CT report with no explanation really as to whether the one has become many, an assumption can be made regarding the use of the english language however............. Apparently it is not too important compared to the soft tissue major organ progression that seems to be having somewhat of a cancer party in my abdomen. The next line of treatment is a chemical concoction of the name Eribulin/Halaven. I tried not to think of those gone before me on this cancer treadmill, following the same protocol, like some 'dark' production line of doom. I try to remember all of our journeys are different, but regardless the protocol's seem to remain the same even though the humans are not.
My oncologist didn't feel my abdomen but told me if the fluid became too much they 'could' drain it. I told them I had booked into the local hospice to have it done, which they agreed would be a much nicer option!! My team also told me that from now on the success rate of the chemo is reduced by 20% and that this next treatment would be my second to last option. I told my team that I had booked a second opinion at the LOC and have a liver appointment with the professor I saw in 2016 at Kings, who has kindly responded to my pleas of another biopsy for the purpose of sequencing and putting data forward for the 100000 genome project. I had emailed him out of desperation as part of my search for a new kind of treatment, my BCN had told me he had retired but it turned out he hadn't. I reassured them that it was just for my own peace of mind that I was exploring every avenue I could, and from every angle. I think they know now that I am just going to do what I want regardless of what protocol is to be followed.
The LOC consultation was a great success, the specialist confirmed that I was receiving the correct 'protocol' of treatment and that she would have offered the same, she also reccommended a BRACA gene mutation test and a definite drain of the ascites to make me more comforatble, she estimated from the feel of my abdomen that 3 litres were lurking in there. The doctor also put me forward for a trial at a private research centre of which I am now waiting eagerly for a slot for. So a chink of light to cut through the enveloping darkness.
So after 24 hours in the wonderful hospice being drained I began my new chemo, a chemo designed to create the image we all associate with cancer, this is by no means an insult to the decades of research that goes into cancer drugs, but they all have there delightful side effects, hairloss, sickness, fatigue, pale skin. So the next phase has begun, my first day or so included vomiting, pain, fatigue sleeploss. Morphine and anti sickness drugs in hand saw me through.
Today though, I sit here, having spent the morning in London after being given what looks like another slither of hope from the kind professor who wants to help me get a targetted individualised therapy. I am beginning to dare I say, come out of what seemed like a very long dark tunnel from which I thought that perhaps there was no return this time. A prospect of which I found deeply upsetting as the timing regarding my daughter and her starting secondary school would be too much for me to bare at this point.
My professor is going to speak to his colleague and friend at the LOC to get some advice as to the best way to proceed, we are talking big big help from big big people on the cutting edge of treatments for cancer, sequencing and analysing genomes and DNA, seeking the yearned for answers, like a droplet of nectar in a vast expanse of desert. There is no 'protocol' here, this is the land of 'pushing boundaries' where the sea's of change flow.
I just have to cling on by the very root of my fingernails in the hope that I am in the right place at the right time, for the stars to get into alignment and for any potential magic to happen. I am beyond grateful that this superbrained man who has lived his life to save others has spared me some time to look at my case and to step in on that 'dark, dark' conveyer belt of doom, reaching his arm out to me as I approached the terrifying 'drop' into the cavernous bin of no return, there is always a chance he could let go, but for now I grasp his hand, like a vice, eyes squeezed shut, blind, blind faith in the essence of life.
