Oh, I didn't want to hear that

Another month, gone, and that means good news - so I have led you to believe. I've been remarkably well and doing more jogging and working and feeling full of energy. My re-scheduled chemo happened on Feb 11, even though my neutrophils were still at 0.8 in the belief they were on the way back (next day 4.1!!!). It was my first IV chemo since the end of November and unusually caused me to be nauseous and sick but that's normal for most people.

Three weeks had passed and for the scheduled fifth cycle on 5 March I was keen to see what my neutrophils would be and would this for much-interrupted regime actually have a three week cycle? They were 1.9 and treatment went ahead; an hour for the anti-nausea drugs and hour or so of the three chemo drugs and then 14 hours of basic fluid with Mesna added to flush the chemo from my kidney(s). A bit of nausea at the end but OK. A nice bunch of fellow patients, much more lively than usual and it was great to meet up with the nurses and doctoring team again. Five down and just one (or two, to be decided) to go.

In February I had belatedly discovered a e-mail list exclusively for people with Sarcomas and decided to join. It wasn't at all that I felt the need for support. I have always felt strong, with only a very few short, low interludes. And I have tremendous support from my whole family and of course, friends and acquaintances (YOU!). But maybe I could offer help, as I've been told my story of good heath has been encouraging for others. Actually it's been great. Instant bonding with people who have actually been through what you're going through is remarkably comforting.

Less comforting is they introduced me to the word "scanxiety": that feeling you have between getting a scan and hearing the results, invariably a few days, sometimes a week or more. Thing is, I didn't use to get scanxiety. Of course, I would wonder what they scan would show, but I was never apprehensive or worried about it. Helped by having great progress through the latter part of 2007 but even when "stable" I was unperturbed. Having a word allows expression, so I found myself scanxious (that can't be a word) on Thursday morning before the Docs all come round.

All that prattle is a long build up to the fact that the scan of 25 Feb shows, in the stark words of the radiographer, "disease progression". But only in one area. The kidney and liver areas are stable: no reduction but no increase. Thing is, the area of progression is an area I didn't know there was cancer, my left adrenal gland. A quick consult with Doctor Wikipedia and I realise I shouldn't be surprised. The adrenal is ad-renal (on the kidney) and located by T12, the 12th thoracic vertebrae, the general location where all the action is. The radiographer actually said: "the left adrenal metastatic lesion is significantly more bulky and now measures 7.2 x 6.2cm (previously 6.4 x 4.6cm)" The previously refers to the last CT scan on 14 December 2007.

Having had all those great scan results August to October where there was obvious visible shrinking, to November and December scans officially "stable" was one thing. Progression - while on chemo - was another. Initially (yes, I know: oddly) I felt mostly annoyed that my mental vision of getting better and better was dashed. I had entered some runs and been spending a little time at the office which I enjoyed. I felt I was getting my life back and now this. But within a couple of hours I recognised that "this" was proof of the winding road of the disease, and I started to re-adjust. I'm not pretending that everything looks the same and so positive to me: I'm in no doubt this is a mind game as much as anything. Look at how long before I posted this blog, it's been written pretty much in this form for three weeks.

But the growing certainty of a return to full effectiveness in 2008 has ebbed and that makes planning and committing (and expecting others to commit to me) problematic. However, the medics have re-iterated their approval of my three week trip to Australia in May and I'm looking forward to meeting up with friends (and lawyers!) I've made over there. The Docs were obviously surprised themselves at the progression with the infrerence that, after squeezing in and extra cycle of this VAC chemo regime before Australia, there may be a return to the hard stuff of last summer. Makes sense: harsh though it was, while I was on it my tumour and mets reduced. While on the VAC regime, which they called a maintenance regime, my tumour has been static or grown.


I'm in good hands and in good spirits. My fond love to all who care for me daily and whenever.

Carpe your diems!

Paul