Sunday 7th June - Bad News

Hi Everyone,

There is no sugar coating this unfortunately - the results of my scan have shown that the nausea is the least of my problems.

Against all expectations the cancer has returned already and spread to my liver and lungs (plus an area around my stomach). I have multiple small tumours which are not operable, so my status is now officially terminal.

I have a meeting with a new oncologist a week on Wednesday. She is a specialist in neuro-endocrine tumours, and it will be then that we decide whether further chemo with different drugs from last time is a sensible idea or not. I feel that it will be worth it, just so that I can feel that I am fighting the disease, but we'll have to wait and see. It seems from an unofficial conversation a friend had with another neuro-endocrine expert that there may be several courses open to me, so here's hoping they can do something to slow the growth.

Unfortunately it seems that the idea that the neuro-endocrine tumour type should be slow-growing has proved to be inaccurate for this particular tumour, and in fact it has been particularly agressive. My last scan 4 months ago was clear and now there are multiple recurrances. If chemo or any other means I try cannot regulate the growth, it would seem that my prognosis is pretty poor. No-one has offered any timescale at all, but I have to be realistic and look at Jade Goody as a worst-case example - we could be talking 6 months or a year. That said, if we manage to find a treatment that helps, it could be considerably longer.

I'm also pursuing a less 'clinical' treatment which is a Japanese mushroom extract called "Maitake" - there is no clinical evidence of success, but there does seem to be some good case data, and unlike a lot of these "alternate" therapies, very little disparaging information. A friend of Vanda's used it when she had cancer and swears that it helped considerably reduce the size of her tumour. It is supposed to work especially well in combination with chemo, so I guess its worth a try.

I'm obviously somewhat devastated about the news, but equally I did expect this at some point, so I'm mentally pretty well prepared at the moment. Of course I've already thought about the consequences should this day come, when I was first diagnosed and before I knew if it was curable or not, so I've had the chance to think of things I might want to do in the time I have. I feel pretty fulfilled to be honest, so the list is pretty small. The one thing that has changed is that if I go anywhere, I intend to go 5-star all the way! :)

I want to get out and about a bit to see some people, but I guess that will depend on what treatment I have and how that impacts me, so we'll have to wait and see how things progress.

I have felt a bit breathless the last couple of days - paranoia says that it is to do with the lung tumours, but I'm hoping its just that I didn't sleep too well the other night and I'm very short of energy. Strangely, I am generally sleeping fine, and since I heard the news on Tuesday night, it has not really had any effect on my sleep.

I fully intend to keep up business as usual until symptoms say otherwise, so I'm going to carry on working as before and I'm still doing this trip to London this week to test my ability to survive away from home (and also so I can catch up with some people that I only see rarely). I've also had a band rehearsal today - quite hard due to my breathlessness, but good fun and something I want to keep up as long as I can.

Sorry for this shock news out of the blue, but rest assured that I'm handling it well mentally, and I don't intend to let it worry me until I've got something concrete to worry about!

I'm not expecting much in the way of news until I see the oncologist, but depending on what transpires, I may start to increase the frequency of the blog again - I'll let you know.

Ho hum,

Col. x