Paul. January 24th 2018

Good afternoon all,
So it seems there are quite a few eagle eyed of you that spotted in the last update that I had a meeting with my consultant – frankly I’m amazed that many of you even pay attention to what I write!
Anyway, leading up to the meeting I had generally been feeling pretty grim and the chemo had been heavy. Nice combination. So in light of that it was actually quite a relief to be told that the chemo I’ve been on has basically achieved nothing other than making me feel decidedly sub-par. So, onto plan B. More on which shortly.
When we first had our meeting with the consultant back in Exeter way back at the very beginning of November we asked roughly how long he expected me to survive. His answer was *if*, and only if the chemo worked, perhaps up to 12 months could be possible but this was very, very unlikely. If the chemo did not work, a couple of short months should be what we plan for. The idea confirmed that it we should not expect a happy Christmas and probably not much merriment over the New Year either for that matter.
When we first saw Professor Wagstaff upon coming back to Swansea on the 4th of December we asked the same question and had the same answer, a couple of months.
Today, the 24th of January we asked the same question. A couple of months. Now this may well be a default response to this sort of question, preparing the patient for the worst while allowing leeway in case progress is better than expected, either way, we’re a long way past our initial estimate of Christmas, albeit the effects of the cancer are doing a good job of becoming more and more pronounced as we trundle along. I am so thankful that as we go deeper along this journey God continually gives us a little more time. I am so grateful to have had this time to be able to spend with the incredible family that God has given me who I love so much – to celebrate Jo and I actually went to the cinema for the first time in, er, possibly years this afternoon (saw “The Post” – absolutely superb film, well worth a watch). Now I know this time will be exhausted at some point but again, God speaks truth that gives great confidence in my time left here:
Job 14:5 - You have decided the length of our lives. You know how many months we will live, and we are not given a minute longer.
I know that God has planned my life from the beginning and he knows exactly when he’s going to promote me to Glory (read that in an obituary!). Means I don’t have to worry about it though, another thing he looks after on my behalf.
Anyway, Plan B: there is an experimental drug combination which is becoming more mainstream that has primarily been developed in France over the last few years. Indeed, when you start reading about it and some of the scientific journals that the treatment process has been published in (yes, my wife is pretty much incredi-woman) they conclude with lines such as “This could be the greatest step forward in treating angio-sarcoma (what I’ve got) in decades”. My consultant also said when asked that most patients have zero side effects. None. Encouraging.
So yesterday I started the new treatment. There are two different chemo drugs as well as some beta blockers that I have to take twice a day. Turns out that the chemo drugs are a little different to what I’m used to, they only take a few minutes to infuse, one 10 minutes the other about 3-4 in syringe form, however in both cases the cancer nurse had to sit by me, watch me like a hawk and if there was *anything* that felt wrong, different or otherwise not normal I was to tell her immediately and the treatment would stop. Apparently it’s pretty beasty stuff.
Then came the second chemo drug in the form of a liquid in a syringe that was injected into the saline solution being pumped through my PICC line. I didn’t ask any questions but it is a bit unnerving when your cancer nurse puts on proper safety specs before even going near the syringe… goodness knows what those two drugs are doing to my innerds but it seems they’re pretty potent things.
One thing I was incredibly grateful for was that I didn’t react to the new treatment, most of you are by now aware how useless my body is when it comes to this sort of thing so I was rather relieved when all was said and done and I could go home – bodes well for the rest of the treatment. Having said that I did get home and sleep for the rest of the afternoon, goodness knows what was going on in there but it properly knocked me for 6!
An interesting side note to my earlier point about life expectancy… the full response from the Prof was something along these lines “Yes, still looking at two months or so….” So far so normal… but then he continued “…unless the new treatment works in which case that could change things entirely.”
Entirely.
When he said that I was struck, I may have a significant increase in the time I have left on this planet to spend with a lot of wonderful people. But the cost is getting higher daily; when was the last time I had a full day where I felt just OK? How about a morning of more than 3 hours? Do I really want to be kept alive for months while feeling evermore like an oversized turd?
There is a song, the first verse goes:
“I am not skilled to understand
What God has willed, what God has planned
I only know at his right hand
Stands one who is my Saviour”
I do not know what God will do in my life, I do not really understand what is going on. Do any of us understand everything that happens to us, why we say certain things, why we behave the way we do sometimes, why we get ill, why we face horrendous suffering? All I know is that there is a God in heaven, he is described as love, he delights in me (and you for that matter, ever thought about that?) and he saved me when I called out to him (at the foot of the spare bed in my grandparents house when I was 11 if you’re interested), and at his right hand is the one who took all my pain, all my wrong, all the things I’ve ever done that fall below his standard of perfection. And he replaced them all with his perfection. I am clearly not perfect, you guys know me! But he forgives everything wrong I do, and as a result from his perspective, I’m perfect. Pretty mind blowing. He is my saviour, the one who gives life to the full and I will trust him, because he *does* know what is going on in my life. He *does* understand the illness I have and one day he will call time on my life here. And then I will see him, face to face. No more cancer. No more pain. No more suffering. Life as it is supposed to be, lived to the full.
So I don’t know how long He’ll keep me alive, whether I’ll continue to feel rubbish or if the new drugs will improve things, but I also know that isn’t for me to worry about – he’s got it under control, he knows what he’s doing and even though things are getting tough now I have even more reason to leave all these things in his hands and make the most of every day he gives me.
Which is a relief!