An update from the silence
On Saturday I posted a photo of me smiling in the hospital. Saturday was one of the first times I felt like smiling while I was in the hospital. Things haven't really improved but they're semi-controlled and I had decided I just needed to have a good day.
I've actually had a really rubbish month. While the world has been falling apart with the Covid-19 threat, my world has been doing it's usual kind of cancer related falling apart as well.
I attempted to go into isolation long before we were told to as a country. I'm already high risk thanks to a lung tumour and the medication I'm on so I intended to hide myself away in my safe little house and we introduced a whole lot of extra levels of germ control to stop anything getting in. Unfortunately my body had ideas other than isolation.
My amazing drug that has been keeping me healthy (based on my low standards) appears to have made my immune system a little confused and it is now attacking my liver. That's not a good thing. The attack on the tumours in my liver was success; this is fighting within the ranks. Treason even. Unfortunately treason in this case is referred to as Autoimmune Hepatitis and it's no laughing matter. It's actually quite serious. Which means I got admitted to hospital so many days ago I'm losing track. Twenty-one I think. We're attempting to save my liver now. Trying to convince the immune system to attack the enemy and not me. Trying, but not moving too far. I'm on a whole host of drugs which not only make me feel completely insane and blow me up like a balloon, they also make me even more susceptible to infection. Just what I want during a global pandemic. On the upside we seem to be getting the overwhelming desire to punch anyone who talks to me under control thanks to some sedatives and therefore some degree of sleep. That's feeling like a bonus for me and, I'm confident, for anyone who's had to speak to me in the last few weeks.
Treason also means I have lost my treatment and I'm back in the unknown. It's too dangerous for me to ever receive this drug again and having no options is terrifying. No plan, no fight, no idea is not cool. That's been the biggest blow for me. We're doing something about my liver but now I'm back to watching, waiting and hoping on the cancer front. That's not really my style and it's taken me some time to come to terms with having the immunotherapy taken from me. Pissed off is probably an accurate statement of how I've been feeling.
There is an upside! An early scan to check the state of my liver has shown the tumours have shrunk again! Two tumours have shrunk by about 5mm each and the other is currently too small to measure. So my overactive immunity army was at least getting some of the enemy too. I remain hopeful they remember their training and can continue doing this without the drug being injected every three weeks. We don't know if that can happen, but right now it's my best hope and what I'm focussing on.
It's tough all over the place right now. Fear is at the forefront for many people and I am certainly feeling grateful to be hiding out in New Zealand where we are not untouched, but a little safer than some countries. While my world is falling apart and my health is bad again I am extremely grateful to have a hospital doing everything they can to save me, a safe place to be when I do succeed at isolating again and people who care (from a distance at this point).
Keep safe everyone!!!
I've actually had a really rubbish month. While the world has been falling apart with the Covid-19 threat, my world has been doing it's usual kind of cancer related falling apart as well.
I attempted to go into isolation long before we were told to as a country. I'm already high risk thanks to a lung tumour and the medication I'm on so I intended to hide myself away in my safe little house and we introduced a whole lot of extra levels of germ control to stop anything getting in. Unfortunately my body had ideas other than isolation.
My amazing drug that has been keeping me healthy (based on my low standards) appears to have made my immune system a little confused and it is now attacking my liver. That's not a good thing. The attack on the tumours in my liver was success; this is fighting within the ranks. Treason even. Unfortunately treason in this case is referred to as Autoimmune Hepatitis and it's no laughing matter. It's actually quite serious. Which means I got admitted to hospital so many days ago I'm losing track. Twenty-one I think. We're attempting to save my liver now. Trying to convince the immune system to attack the enemy and not me. Trying, but not moving too far. I'm on a whole host of drugs which not only make me feel completely insane and blow me up like a balloon, they also make me even more susceptible to infection. Just what I want during a global pandemic. On the upside we seem to be getting the overwhelming desire to punch anyone who talks to me under control thanks to some sedatives and therefore some degree of sleep. That's feeling like a bonus for me and, I'm confident, for anyone who's had to speak to me in the last few weeks.
Treason also means I have lost my treatment and I'm back in the unknown. It's too dangerous for me to ever receive this drug again and having no options is terrifying. No plan, no fight, no idea is not cool. That's been the biggest blow for me. We're doing something about my liver but now I'm back to watching, waiting and hoping on the cancer front. That's not really my style and it's taken me some time to come to terms with having the immunotherapy taken from me. Pissed off is probably an accurate statement of how I've been feeling.
There is an upside! An early scan to check the state of my liver has shown the tumours have shrunk again! Two tumours have shrunk by about 5mm each and the other is currently too small to measure. So my overactive immunity army was at least getting some of the enemy too. I remain hopeful they remember their training and can continue doing this without the drug being injected every three weeks. We don't know if that can happen, but right now it's my best hope and what I'm focussing on.
It's tough all over the place right now. Fear is at the forefront for many people and I am certainly feeling grateful to be hiding out in New Zealand where we are not untouched, but a little safer than some countries. While my world is falling apart and my health is bad again I am extremely grateful to have a hospital doing everything they can to save me, a safe place to be when I do succeed at isolating again and people who care (from a distance at this point).
Keep safe everyone!!!
No smiling photos on this one...computer says no!
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