Tuesday, 18 August 2009

Back to life, back to reality .......stopped cycling; in limbo

The Fantasy
In the red corner: Steve; Velcade and Cisplatin; the medical team; the family, friends and well wishers support network. In the blue corner, Leo the mesothelioma tumour and a long gestation period. It's got to be a fair fight, no cheating, six rounds, go for it! ....And the winner is Steve, by a knockout in Round 2.

The Reality
Dreams can come true, but our wild hopes that Leo would succumb and shrivel away after two cycles of chemo were a fantasy too far. The reality this morning was more mundane. The tumour has not grown since the first scan on 23 June, eleven weeks ago, and may even have shrunk just a little - although it's difficult to measure, being more like a wispy cobweb that a solid mass. However, there has been no assessment based on the second scan taken just before chemo began on 8 July. Consequently, this morning, the doctor couldn't pin down with absolute confidence any changes directly attributable to the drug trial treatment.

The doctor pointed out (again, as she had at the outset) that chemotherapy is not a cure, but a means of improving the quality of life for people with mesothelioma. The scan results were what she would expect to see after only two cycles of treatment (such assessments are usually made after three cycles). Given that Steve is well in other respects and managing the side effects, she was happy to continue chemotherapy using Velcade.

For reasons it's difficult to explain, neither of us felt overjoyed by the result - in fact, we both felt rather disappointed, deflated and dispirited at the time - we had such high hopes. We really must learn to think positively AND to manage our expectations a bit more realistically.

The Unexpected
Things didn't get any better as the morning drew on. Steve's blood samples (tested on the ward) showed a decline in his white blood cells/platelets - a sign that the chemo is affecting his immune system. The drug trial protocol requires a blood count figure of 1.5, whereas Steve's count came back as 1.3. Because the result was marginal, we agreed to stay on the ward whilst the samples were sent to the haematology lab for more accurate testing. News came back and hour or so later that the result was 1.36, still below the threshold necessary to proceed with treatment today. So that's it. The cycle's brakes are on for the time being. All being well, his blood count will rise with more time off chemo and we'll be back on track to start Cycle 3 next week.

Sadly, we're unable to make the most of this extra week off treatment as I'm committed to going back to work tomorrow for three days. However, the break will give Steve a chance to relax and build up his strength ready for battle to re-commence in a week's time. We just need to go through our diaries and the calendar now and revise the treatment dates. Although it will only extend the overall chemotherapy course by a week, shunting everything back impacts on the timing of future "weeks off" treatment and day visits to the hospital. Thank goodness we haven't made too many plans and I have some flexibility around only a few fixed dates when organizing my working time.

The legal stuff
When we arrived home some five and a half hours later, with nothing to show for it, there was a letter waiting for us from the solicitor advising about a possible claim for compensation. Reading between the lines, it looks like more hard evidence about when, where and how Steve was exposed to asbestos is needed before matters can be taken any further. Steve will have to dig deep into the memory banks, again.....So, if any one out there knows of someone who worked with Steve at PSA in the 1970s, or helped create the open plan studio by knocking down walls on the architect's floor of Oxford Poly in the late 1960s, please get in touch with us (in confidence, if necessary).

The future
Looking back on today's events, I can understand why we have felt a bit down. However, we really should be celebrating the good news that Leo has not grown in the last three months or so, and may even have been knocked back a teeny bit. Extending the overall treatment period by a week isn't the end of the world - certainly not as bad as having to start all over again. It's not as though Steve is in pain, having problems breathing or mobility difficulties. Those who have seen him recently have remarked how well he is looking. Time to go away and count our blessings. Limbo isn't such a bad place to be just for a week.....

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