Health Update
Just over two weeks ago we met with our oncologist, presenting the latest set of scans and blood results. At that point I had been jaundice free for perhaps 5-6 weeks which was definitely making life more comfortable. My oncologist, you could tell, was very pleased to see how I was a survivor, that I was beating odds that we all thought would have killed me by Christmas.
My bilirubins had dropped down to 50, possibly the lowest since mid-September. Great for getting into SIRT though we would no longer be pursuing this path as my lungs were such a mess. And ideally I needed to get the bilirubins down to under 20 to be allowed on any clinical trials. (Less than 20 being considered normal for a healthy person). As expected there were not really any options I could engage in at the moment, though a promising tablet-base trial was hoping to commence in late April/early May, and that commencement date brought a little silence into the consulting room. None of us are expecting I last that long. It's a huge carrot on a stick, and even if my bilirubins were to pass, my general state of ill-health come late April might be so bad that I'd be too weak to commence such a trial anyway. Still, a light in the dark, something to seek in that long long passage of nothing and darkness that I'm already sinking into. (Oh, the melodrama...)
But that night friends who arrived from NZ to stay for a couple of days were pleased to see how I had improved and that there was hardly any yellow in my eyes at all these days.
Fuck.
There should be none.
So to make that stick and carrot even more unwieldy, the jaundice is back. I'm living with it better this time around, but it leaves my dehydrated, fatigued and with altered taste buds. Not good really. Nothing like making life a little tougher than it needs to be.
Where am I at? Sleep is broken, not really because of the jaundice this time around, but because of the loss of muscle mass causing my shoulder blades to be noiser than a bowl of Rice Bubbles. And a hell of a lot more painful. I'm struggling to read more than 2 pages at a time in any given book before my eyes begin to close. Fatigue, I think a lot of it feels like what I went through with the deep jaundice, is wreaking havoc on that side of my concentration. It's the same with movies and tv shows - though I can often last an hour before I begin to nod in and out nodland. Which would be nice but invariably I wake up in pain with the shoulder screaming at me "what the fuck do you think you're doing leaning on me?"
I also have a lot of fluid retention building around my feet and abdomen. I'm elevating them for most parts of the day to keep them under some sort of control, but it's definitely not ideal. I'm taking 40mg Oxycontin twice a day for pain killer duty, and have only just managed to get that dose under control so I don't spend the hour after taking them in nodland. (Haven't quite figured out the new dose of Coloxyll/Senna I need to take to battle the constipation though - so this is also causing pain when I misjudge it all).
I awoke late afternoon or early evening (I don't recall which) feeling hot and sweaty, the remnants of a green vegetable juice awash in my guts and I'd like to say ran outside but I can't run, and fell to my hands and knees and proceeded to throw up. Except I didn't. Very strange. Jules, not quite panicking, but definitely alarmed noticed just how distended my belly was, freaked out somewhat and called the district nurses. My body calmed and cooled down somewhat over the next hour and I managed some pitiful toilet time before the district nurse was knocking on the door. My pain killers were also kicking in now too.
The nurse talked with Jules and I for about an hour (essentially nothing she could really do, unless perhaps she needed to inject some morphine, but I was quite stable by this time, and Jules was also a lot calmer.
My appetite is thing of the past. I know I have to eat because if I don't eat I will die, and yet the plate of food (doesn't matter what Jules cooks) is often too hard for me to even contemplate. I've stopped eating the evening meal with my family and instead will snack on its and pieces with a fruit and carb-loaded smoothie until I go to bed (anywhere from 10:30pm-1:00am). Breakfast is still okay and I'm back on 1-3 vegetable juices per day simply to get nutrients inside me.
I'm no longer accepting visitors or taking phone calls (Jules is vetting them for me, and that is just as exhausting for her) but email correspondance with me is still good. I can approach it at my own pace, and reply when I have sufficient energy. Of course, important calls are still taken, but social stuff I just cannot do. If you want to know how we are coping, particularly me as Jules prefers privacy and doesn't often appear in these posts, then please read the blog as the source of info.
It's getting close, people, very close.
Very soon we're going to have to have *that* conversation with Isla, and I'm so scared of bursting that big happy bubble she currently lives in.
My bilirubins had dropped down to 50, possibly the lowest since mid-September. Great for getting into SIRT though we would no longer be pursuing this path as my lungs were such a mess. And ideally I needed to get the bilirubins down to under 20 to be allowed on any clinical trials. (Less than 20 being considered normal for a healthy person). As expected there were not really any options I could engage in at the moment, though a promising tablet-base trial was hoping to commence in late April/early May, and that commencement date brought a little silence into the consulting room. None of us are expecting I last that long. It's a huge carrot on a stick, and even if my bilirubins were to pass, my general state of ill-health come late April might be so bad that I'd be too weak to commence such a trial anyway. Still, a light in the dark, something to seek in that long long passage of nothing and darkness that I'm already sinking into. (Oh, the melodrama...)
But that night friends who arrived from NZ to stay for a couple of days were pleased to see how I had improved and that there was hardly any yellow in my eyes at all these days.
Fuck.
There should be none.
So to make that stick and carrot even more unwieldy, the jaundice is back. I'm living with it better this time around, but it leaves my dehydrated, fatigued and with altered taste buds. Not good really. Nothing like making life a little tougher than it needs to be.
Where am I at? Sleep is broken, not really because of the jaundice this time around, but because of the loss of muscle mass causing my shoulder blades to be noiser than a bowl of Rice Bubbles. And a hell of a lot more painful. I'm struggling to read more than 2 pages at a time in any given book before my eyes begin to close. Fatigue, I think a lot of it feels like what I went through with the deep jaundice, is wreaking havoc on that side of my concentration. It's the same with movies and tv shows - though I can often last an hour before I begin to nod in and out nodland. Which would be nice but invariably I wake up in pain with the shoulder screaming at me "what the fuck do you think you're doing leaning on me?"
I also have a lot of fluid retention building around my feet and abdomen. I'm elevating them for most parts of the day to keep them under some sort of control, but it's definitely not ideal. I'm taking 40mg Oxycontin twice a day for pain killer duty, and have only just managed to get that dose under control so I don't spend the hour after taking them in nodland. (Haven't quite figured out the new dose of Coloxyll/Senna I need to take to battle the constipation though - so this is also causing pain when I misjudge it all).
I awoke late afternoon or early evening (I don't recall which) feeling hot and sweaty, the remnants of a green vegetable juice awash in my guts and I'd like to say ran outside but I can't run, and fell to my hands and knees and proceeded to throw up. Except I didn't. Very strange. Jules, not quite panicking, but definitely alarmed noticed just how distended my belly was, freaked out somewhat and called the district nurses. My body calmed and cooled down somewhat over the next hour and I managed some pitiful toilet time before the district nurse was knocking on the door. My pain killers were also kicking in now too.
The nurse talked with Jules and I for about an hour (essentially nothing she could really do, unless perhaps she needed to inject some morphine, but I was quite stable by this time, and Jules was also a lot calmer.
My appetite is thing of the past. I know I have to eat because if I don't eat I will die, and yet the plate of food (doesn't matter what Jules cooks) is often too hard for me to even contemplate. I've stopped eating the evening meal with my family and instead will snack on its and pieces with a fruit and carb-loaded smoothie until I go to bed (anywhere from 10:30pm-1:00am). Breakfast is still okay and I'm back on 1-3 vegetable juices per day simply to get nutrients inside me.
I'm no longer accepting visitors or taking phone calls (Jules is vetting them for me, and that is just as exhausting for her) but email correspondance with me is still good. I can approach it at my own pace, and reply when I have sufficient energy. Of course, important calls are still taken, but social stuff I just cannot do. If you want to know how we are coping, particularly me as Jules prefers privacy and doesn't often appear in these posts, then please read the blog as the source of info.
It's getting close, people, very close.
Very soon we're going to have to have *that* conversation with Isla, and I'm so scared of bursting that big happy bubble she currently lives in.