Well it is some time since I added any to my little tale but as I have had a few changes and a setback I thought I would add a few notes and post some questions to see what response there is in the "New Normal" world. The details may wander a bit and thre may be too much info, but without putting "pen to paper" it's difficult to know how far to go!
The first thing is to wish all a better and peaceful New Year with no negative changes to your lifestyles. i.e. it must be positive from now on.
Four weeks ago I found it was becoming more difficult to swallow and having read and asked a few questions I decided that all that I needed was a simple "stretch". How wrong was I !! The doctor who did the endoscopy told me in no uncertain way "it's come back" Well I was devastated to say the least. I had been feeling so much better and was even going to the gym on referral to get fitter and started up my Thai Chi sessions (still going back in the NY). So to be told in such a blunt way wasn't good and having to wait all this time for a CT scan was sooo depressing. Took the edge off Christmas completely, just need to say that without the support of my wife and daughter it would have been so much worse. If you have a team like mine you won't go far wrong.
Anyway back to the tale, I saw my consultant yesterday and I have now got a number of options to go down. He still needs to do some homework to see which may be the best route to follow. It looks like I have the following options:-
1. No treatment - not really an option
2. Chemo with a slightly different Platinum derivative with tablets
3. as in 2 but with Radiotharapy. This depends on location of last Radiotherapy site
4. Clinical Trials of new drugs either at Addenbrookes or Royal Marsden
5. Last one is a PDT Photodynamic Therapy for which some trials have been done.
And that's where you guys may be able to help?
Is there anyone out there that has been to the Royal Marsden for treatment and has anyone had experience of the PDT trials or any other trials that may be useful?
In any case it looks like I must have some treatment soon as my cancer is beginning to prevent food getting into my new "stomach". It gets rather painful within minutes of eating small meals but at the moment it wears off after an hour or so. At least I am not loosing weight at present, just managing to keep the balance between exercise and eating is the difficult bit.
So there you go. Happy New year guys