Stage IV Oesophageal Cancer - Nearly Year 2. Carrying on Blogging.

I have been spending some time roaming this site - a return visit after some failures earlier in the year.  I know people are communicating with each other out there and I think I have managed to communicate with them ...but I am not sure!

And I don't think I really meant to start a blog but now I have started, I will continue and record for those people, if any, who might find 'the carer's' story of interest.  My apologies if this seems self-indulgent.  

Here is the story so far.  In December last year my husband was diagnosed.  He asked the dreaded 'how long' question and was told, if he was lucky, he might make double figures.  

You cannot fault the speed with which the NHS got him into the chemo regime - or pushed him through the chemo trough, depending on your point of view.  What nobody had explained was that there was going to be no re-staging, no operation, in fact , nothing else except a trial of yet more chemo because he is so fit and an ideal candidate!  And nobody would have explained anything if I had not gone in with the SIGN document (Scottish treatment guidelines) and asked them to explain where we were.  It was a very inexperienced registrar who pointed his trembling finger at where my husband was on the staging chart - off the bottom of the page.  

My brave husband took himself in for his chemo - driving almost a hundred-mile round trip, sometimes in atrocious weather.  Always bouncing in for his checkups - defying the gloomy prognosis with a smile.  

Liver metastases shrank by more than sixty percent (they were tiny anyway). Blood-counts all fine and so on. 

But the eating is now getting more difficult.  He is getting more tired and we are constantly racking our brains about what to eat next.   At least now I have given up work for a while and I will be able to put my mind to the eating problem and, as important, continue to be an irritant to the medics and see what can be offered other than stents.  

The cheery smile is waring a little thin now.

Thanks to those who did respond to first blog.   Crystal is clearly a heroine for oesophageal cancer sufferers and carers.  And Terri a star in the chat room - a place fast, furious and whacky which left my head spinning and finger-tips aching.