Throughout all of this, from my first diagnosis to the latest news, I’ve just felt like “I will just deal with it as there’s nothing much else I can do”. To me this feels like a totally normal reaction but other people don’t see it in that same way – I guess because my “nothing much else I can do” is for me at least “Can only be positive, can only continue as normal and try to make the best of it” and I know not everyone is like that.

I think because of this I’ve found it quite difficult in a way reading some of the utterly wonderful comments people have made. It’s like I don’t feel I’ve done anything special or different to how I would handle any situation so don’t deserve what’s being said.

If there’s one thing I did want to come from this blog it was for people to take the positive and it’s really quite overwhelming to see people feel inspired by it. It’s also wonderful to see people take inspiration and comfort from each other’s comments.

It’s been a difficult and confusing week really. Actually, confusion is probably the one constant thing in the back of my brain. It’s been hard to just think about things completely clearly without this element of what the heck in the mix. I got through the difficult and pretty repetitive task of telling close friends and family what the situation was and obviously launching this blog which told everyone else I needed to. First couple of days was the expected flood of messages and my wife and I both found it all a bit overwhelming processing through them.

Almost everyone I think has had the same reaction to the news, feeling incredible sorry, asking if there’s anything they can do to support us but ultimately not really knowing what else to say. My reaction has been much the same to all – we really appreciate the support and if there was anything we could think of we would absolutely ask. But you know there isn’t anything to say about it. It is what it is – hugely unfair for everyone… especially unfair for my wife and for my family. The way I see it is, I’ve only got a short time of having to deal with it before I’m gone, everyone else has to deal with the after.

Probably the first question people we’ve seen have asked is “So what are your plans in terms of what you want to do with your time?” It’s a slightly crazy thing to think about, your things to do before you die list and it’s pretty difficult, for me at least, to think clearly about it. There are absolutely projects I want done, there are of course places I would like to visit but they all feel secondary to just wanting to spend time feeling happy in whatever situation and wherever we are, be it at home lying on the sofa or jetting off somewhere.

Next month is our wedding anniversary so we’re planning a trip to Edinburgh for a long weekend. Both only flown through and never visited and given my mobility issues it seems like a good choice in that we can stay right in the centre and hopefully take lots of photos! Ideally it would be New York or somewhere else abroad but I just don’t feel comfortable at the moment being so far away in case of health problems, especially given I won’t be able to get insurance. That’s one of the things with the “list”, where we go is limited by my mobility and health which has been a little difficult to accept at times. It’s like, okay I have a certain amount of time left and instead of being able to relatively freely go wherever I want I can’t and have to be practical about my situation.

I think overall though we’ve got a good idea of what we want to do with our time at this stage. I’ve not yet felt the probably inevitable panic about how little time I have and I didn’t get to do this thing or finish this thing. It seems like it makes more sense to just take things sensibly and get things on our list booked in as best possible, without attempting to cram it all into the next 2 weeks.

Part of me wishes I had some kind of end date in which to be able to plan against but I guess that takes some of the “fun” out of this… it also would take some of the hope as to how long I actually have.

… but I’m not going to spend one second being angry about it.

I decided under the circumstances that I would start a blog about dealing with what is my final prognosis.  I’m terminally ill and I have a pretty short amount of time left.  How long that is I don’t know but based on my current situation we are talking about months.  That being said, it could be 3/6/9 months or longer even but realistically I don’t expect to see out 2012.

I knew after the failure of the phase 1 trial chemo combination in Feb/Mar that things were starting to look pretty bleak but also that there were potentially other trial drugs we could still try and so met with the trial team week before last.  They were pretty upfront from the start that on the basis that the previous trial didn’t work and that was a good combination to try under the circumstances that there weren’t really any other trial drugs that were likely to work for me.

We would be looking at single digit % chance of success and given what’s involved in a trial i.e. lots of hospital visits/blood tests/side effects from treatment etc the team felt from a quality of life perspective it just wouldn’t be worth it for me.  I still needed to see the urology team who originally did all my treatment for chemo last year up until the trial to discuss any traditional chemo options.  Unfortunately I also knew that given the extremely intense chemo I had undertaken last year didn’t do the job of curing the cancer there wasn’t much chance any other regime would be able to do any more for me.

We had our appointment with the urology team on Friday and talked through some of the chemo options.  They can offer me a lighter combination of drugs that I would take as an outpatient, one of which I’ve had before as part of last year’s chemo plus a different one.  In terms of what the chemo could do for me it was spelt out as if it works it will buy you some time, probably months.  In theory it could be 6/9 even 12 months but most likely the shorter end of the scale.  The problem would be that I would be having to deal with chemo while only possibly extending my time by a short amount and only if it works and they don’t know if it would.  While the chemo wouldn’t be anything like the intensity I had last year I would still have to deal with nausea, fatigue and all the other typical side effects.

When faced with that the choice to make just felt obvious.  No more treatment as it’s not worth feeling horrid from chemo for a small chance it might give me a few more months.

So that’s where we’ve ended up.  The doctors have left it completely up to us as to what we decide and we’re going back in two weeks.  I can certainly change my mind and still try the chemo but I think it’s unlikely I will.  What they are starting me on is a drug to help strengthen the bones in my spine as this is where the main cancer spread is and it will hopefully help stave off the cancer a little longer.  Unfortunately my mobility is not great thanks to the lesions on my spine.  The radiotherapy should have helped a little bit but I need crutches to move about as I can’t stand up straight or without pain.  Because the cancer is in the spine I don’t expect things to improve so I’m doing my best to just adjust to using crutches all the time.  I can still drive at least, but long walks are out!

For me personally, I think I felt like maybe this was always coming.  That everything about the situation just didn’t feel quite right.  The fact it’s still an unknown type of cancer, the partial response to chemo only…. the multiple radiotherapy sessions because it kept coming back.  It just seems like I was always going to be this unusual, probably uncurable case.  But then maybe everyone thinks that when faced with something like cancer!

What I do know though is that I have such amazing support around me.  My wife’s strength, support, selflessness and utter incredibleness (not a word but no better way I can describe it) continues to astound me.  My family and my friends continue to show as much support as I could ever hope for.

As I said at the start, I’m not going to waste any time being angry about it.  That’s not who I am and why should I waste a single second I have left being bitter or mad.  We’re obviously planning out what we want to do with my time, trips we want to make… people we want to see and time we want to share with our friends and family and will absolutely make the most of everything.

I hope that people can find and sense the strength and positivity that I still feel from all of this and know that while it’s a really hard thing to hear and deal with I am still me and hope to be until the end, whenever that is.  I also hope that writing regularly about all of this will help people understand, come to terms with, even enjoy in some small way how the heck someone ends up dealing with this situation.