Monday, 20 October 2014

So far, so good with the chemo

I had my first infusion of the new course of chemotherapy last Wednesday, the process went without any hitches and in general I've been pleased with the way that I've been feeling. I'm experiencing some fluid retention but this seems to have stabilised in the last couple of days and I'm hoping it may start to decrease ahead of my next infusion on Wednesday. It's early in the first cycle of treatment however and I know that I might not be this lucky in the next week and that in my previous treatment with these drugs I experienced more significant issues as the cycles went on.
My main problem at present relates to my mobility. I'm now finding that I'm sometimes unable to walk more than two or three hundred yards before I develop severe discomfort and some pain in my chest, tummy and lower abdomen. On a good day I might do better than this but good days seems to be rarer than they were a month ago. I'm considering how I can best prevent this problem from stopping me from getting out and about, I have a feeling I'll be writing about test driving a mobility scooter soon!


There's a very good bill that is currently seeking to pass into law that was in the news last week, it's the 'Medical Innovation Bill' and is designed to allow doctors to prescribe unlicensed drugs to cancer patients for whom existing treatments have failed. Whilst there are a number of genuine concerns about the safety of such drugs, the tolerance for risk amongst patients with a deadly disease and no licensed treatment options available to them is much higher than amongst 'normal' patient groups.
I've had some recent experience closely related to the issue the bill seeks to address. There is a treatment I'd like to consider in the future which is not approved for use in my cancer. Even though this treatment involves using drugs that have been safely taken by large numbers of patients with different cancers and conditions my oncologist explained that it would be difficult for him to prescribe as it hasn't been tested in Leiomyosarcoma or in the drug combination I'm interested in trying. The frustrating thing here from my point of view is that if I were denied access to this treatment then I'm not aware of any alternative option that I'd be willing to try.

I would very much like to see this bill passed by parliament as it will address a need that is felt by many people with advanced cancer. You can read the BBC story on the bill from last week here or the very short text of the bill itself here.


A few weeks ago we visited Canterbury. I've always enjoyed visiting cathedrals and attempting to take photo's of their interiors so I was keen to spend some time at Canterbury's. Here are a few photo's (click or double click to see larger versions):


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