Tuesday, 16 March 2010

Nine months on and still going strong

When I started writing this blog in June 2009, I had no idea of how long it would go on.  In the darkest hours, when the anxiety levels had gone off the top of the scale and it was difficult to see much hope in the black gloom which opened up in front of us on 16 June, I wondered whether I would still be writing it in 2010. 

With a "median" survival rate of 8 months, based on statistics for the meso population as a whole, you can appreciate one of the things feeding those fears.  Being assessed as 100% disabled fueled our concerns about the aggressive nature of mesothelioma and how quickly Steve's health might decline. 

But here we are, nine months since diagnosis, and Steve is still going strong. The numbness in his fingers and toes (a side effect of chemotherapy) continues, but doesn't seem to be getting any worse.  We only fully appreciated just how badly some people can be affected, when the doctor asked last week whether he was able to do up a small button without a problem (which he can).  She also warned him about wearing sandals in the summer, incase a bit of grit became trapped under the sole of his foot causing a sore to develop, unnoticed, because of the lack of feeling. Thank goodness Steve's numbness isn't that bad.  

The cancer itself is stable - still just in one lung and no noticeable change in Leo's size in the last nine months.  We had initially hoped for some tumour shrinkage when Steve joined the Velcade drug trial, and had felt somewhat let down when that didn't happen. However, as his day-to-day life is not affected by pain or breathlessness, stabilizing the cancer at a level which he can live with "normally" has to be welcome news. Whether this stability can be attributed to the chemo and/or the supplements he is taking to help boost his immunity, we don't honestly know. The good thing is that it IS stable, and there are treatment options available which ought to help slow down progression in future.  

Which brings me back to statistics. Andrew Lawson, a doctor with mesothelioma, that we've been in contact with recently, pointed us to an article entitled "The median isn't the message" - a personal story of statistics by an American Scientist called Stephen Jay Gould, who was diagnosed with mesothelioma at the age of 41. I'm not going to give you a blow by blow account here, but will happily pass on details to anyone who would like to read it. 

The bottom line is when it comes to statistics, means and medians are abstracts.  The curve of variation on either side of the median is not symmetrical.  To the left is the "short tail" - those poor souls who die within eight months of diagnosis, including some who are not diagnosed until close to, even after, death.  However, the right hand side of the curve - those who live longer than eight months - is much more stretched out.  Indeed the right side "tail" can, and does, extend for years. Steve is now firmly on the right hand side of the curve and has a lot going for him:

  • epithelial mesothelioma (the type Steve has) is associated with increased survival rates and a better response to treatment efforts than the other major sub-types, sarcomatoid and biphastic 
  • he was diagnosed early 
  • he has access to good treatment, including drug trials 
  • he's in his early sixties, rather than 70s or 80s; in good general health otherwise, has lots to live for and a passion for life   
.....Not forgetting a wonderful support network which helps both of us.  Please be there for us over the next nine months, and beyond!

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