Crikey. What a bloody week. Stuffed full of lows, with a dusting of highs and everything in between.
We met the oncologist last Friday (8th Feb) who told us that things have deteriorated by a fairly alarming degree. I have not had any chemo since early December because of the pain in my abdomen (which we now know was caused by post-surgical adhesions) so it was no surprise that things had got worse but the question was, how much worse?
The simple answer is worryingly so. The principal area of concern now seems to be my lungs, wherein there are now about 40 cancerous growths ranging from very tiny to about an inch in diameter. She said that, in the greater scheme of things, an inch is still relatively small but it's still a bloody inch. She was also quite surprised that I was not suffering any side-effects, but this is actually a good thing.
There is also a new suspicious growth in my liver which, thankfully, is still quite small, and there remains some doubt as to whether the radio-frequency ablation (RFA) administered to another growth last summer was, after all, successful. It is difficult to tell as, post-RFA, the appearance of tumours will change anyway, whether successful or not. On this one, only time will tell.
And finally I have three fairly substantially enlarged lymph glands, one in my abdomen, one in my chest and one in my shoulder/neck, which implies the cancer has taken up residence in my lymphatic system as well.
So all told, things are not good and I need to get some chemotherapy into me as soon as possible in order to try to stop the spread and, ideally, shrink things back a bit. My oncologist was very up front about the fact that there is now no chance I will recover from the cancer, and it is going to be a question of managing it and trying to contain it for as long as possible. I will be on chemo for the rest of my life, every two weeks most likely.
We asked whether further RFA might be possible, in particular on the larger tumours in the lungs, but RFA (or any surgery for that matter) requires recovery time before more chemo can be administered so, for the time being, the focus needs to be on chemo and, if things do go in the right direction, we might be able to consider further RFA further down the road.
I'm going to be on a new chemo cocktail, using all three of the previous types that we know were effective - Oxaliplatin, Irinotecan and 5FU.
We briefly discussed clinical trials but we are not quite at that stage yet. We need to see if the chemo works, but if it doesn't, that will be the next step.
We left the meeting with our heads spinning and an overriding sense of doom and gloom. If things had been serious before, they were now critical. If the chemo does not do as we hope, my days are very much numbered. Bekky later told me that, as we walked in a daze through the hospital corridors and back to the car, doubts as to whether we would beat this bastard had crept into her mind for the first time since this whole ordeal had begun.
We then had an hour to get our heads together before we were to head off to Brighton for Bekky's graduation ceremony. Highs and lows. Thankfully this was a wonderful afternoon, full of happiness, pride and celebration, and which helped reset the balance with the traumatic morning we had endured.
The next excitement in store for us was a laparoscopy on Monday morning to try to establish, and hopefully cure, the pain in my abdomen that had been present since November last year. The procedure had come about very suddenly - I had been to see my bowel surgeon in London the previous week after failing to make any headway with the NHS. He immediately suggested that adhesions were the probable cause (not cancer, as we had so feared), and sent me for a CT scan which took place an hour later...! And 6 days later I found myself back at The London Clinic - still my favourite hospital in the world, if you can have such a thing - awaiting surgery.
The procedure went well, and he found and dealt with "a lot of" adhesions throughout my abdomen and in particular around the site of my former stoma and my liver. Finally a moment of hazy sunshine in an otherwise very gloomy world. The adhesions were preventing my bowel from moving about as it should and, I understand, also created a couple of very dodgy kinks and bends that will have fouled up my digestion pretty well. He took a number of biopsies while he was in there as well which, hallelujah, came back as non-cancerous.
I spent three nights in hospital and felt remarkably rough despite plenty of powerful painkillers - a bit like I had been punched repeatedly in my guts. I came home on Thursday and today, day 6 post-surgery, things seem to be very slowly on the up - my appetite seems to come and go, but having been AWOL since Christmas I think it's a bit better. I have lost another 3kg or so, though, and I currently weigh less than I have since I was about 12 years old. I am told it will take a good week or two for things to return to normal, and even then there are no guarantees that things will be perfect.
The key now is to get me sufficiently strong over the next couple days to be able to face chemo early next week, most likely on Tuesday. The good news is that my bum is pretty much fully recovered, and I hope that if I start chemo with that particular area in good order, the pain that I suffered previously should be easier to avoid.
I would imagine there will be three or four rounds before the next scan, which will then tell us whether or not the chemo is doing what it should. In theory, it should given it has been effective in bringing levels down in the past, but if the cancer is now "stronger" than the chemo, there's a chance it might not be able to contain it. That is a bridge we will cross when the time comes.
So, yes. Heavy, heavy times. Had I been to see my bowel surgeon when these abdominal pains first cropped up in November, I might by now have had an additional couple of rounds of chemo and things would be far more under control. But there's no point in crying over spilt milk, and there is nothing we can do beyond looking forward and hoping that we can bring what is now a fairly rampant cancer under control.
Mentally, Bekky and I are doing our best - we vacillate from one end of the spectrum to the other, from counting how long I have left in days to feeling quite positive and hopeful that I still have a good few years left in me. The truth is, nobody knows. Nobody can tell us. And frankly, we don't want to know. When the time comes, and sadly it will, it will be all too obvious and unavoidable.
All things considered, I feel OK at the moment. Far from good, but OK. Yes, there is post-surgical pain and discomfort which I am managing with heavy duty painkillers, and yes, I am having to take each day very, very gently but I don't feel terrible. But neither do I feel well - I get dizzy when I stand up, my appetite is still lacking, and when I don't take painkillers, my whole tummy feels dreadful. And my wife tells me I look like I have just stepped out of a concentration camp. Or possibly a crack den. She's not wrong.
Are we afraid? Yes we are. Last night, for example, I was a wreck - pale, exhausted, light headed, uncomfortable - to the extent that it was quite frightening for both Bekky and I. And during those times, you can't help but wonder if I am actually going to get better again, or is this the start of a steady decline? I am so weak, so filled with painkillers, so not me, that that in itself is frightening. Thankfully, a good night's sleep and this morning I have awoken feeling a bit stronger.
Bekky is being completely amazing in her care for me, which is a huge help, so with a little luck, things will start to improve soon enough.
I guess the next few days will be key - the one encouraging thing is that the surgeon said it will take a good week to two weeks for me to recover and, given how washed out I was when I went in for surgery, small wonder I'm not springing about and eating like a horse yet.
All we can do for now, like so many times before, is wait, watch and hope.