23 April – St George’s Day and oncology appointment

St George is the Patron Saint of England … you know … the dude who slew the dragon. It doesn’t get celebrated quite as enthusiastically as St Patrick, Andrew or David, but it should be.

This year I will be having my three monthly check up with the oncologist and as I haven’t had any scans since October he may order some before my next appointment with him in July. I have been having my Zoledronic Acid treatments (aka Zometa, Zoledronate) at the local hospice which is SO much better than having to go into the city and the General Hospital, which I have to admit I loath going to. I want to give up the Zoledronic Acid as it is blasting holes in my nasal passages and my ears. I have been on it almost continually for 5 years and I think it is time that it stopped and I was put on another treatment, or maybe just stop bone strengtheners altogether. Or what about every three months?

One of my problems with the hospital is that I don’t feel that they listen to what I have to say, and they don’t take my symptoms seriously. It wasn’t helped by the first oncologist (now working in Australia and possibly our best export there since the last convicts) saying that chemo was ‘not appropriate at this time’ when I asked why I was not having any chemo after my Stage IV diagnosis, and that my treatment would be solely palliative and that when symptoms arise they ‘might’ do something about them. Not exactly the most encouraging of concepts, especially when he initially told me that I had six months, possibly a year, to live … but that was in February 2008 so at the moment I am doing quite well really!

Living with cancer can make you a bit bi-polar at times. Things are going well = why are they going well? Things are going badly = why are they going badly? One minute it is ‘I can live for a long time with this’ can so quickly become ‘what does that pain mean? Why make plans beyond a few months? Then realising that I need to think that I will be here in months and years in the future.

My sister-in-law is coming with me tomorrow, or at least will be there because I need to go into the city before I have to get back to work and she needs to get back to work earlier, so we will meet there. She is a good advocate for me, and because she works in Admin in the NHS she has some idea of how the systems work. I tend to try not to be assertive because it can so easily boil over into losing my cool about it all, because I feel that they don’t listen. The hospital had evidence in 2002 that I might have cancer and did nothing. My GP also knew this and took no interest. But there again it can’t be undone now so I just have to get on with it. Maybe my sister-in-law will be my personal St George and slay the hospital dragon for me …

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