Last Monday I woke in the middle of the night with a high fever. I woke Sarah and we decided to head into the day ward early and let the docs know.
We already knew that I had a couple of bugs growing in my system but as they previously had not caused any problems with fever we had taken a wait and see approach.
The most prudent thing to do was to be admitted and administer IV antibiotics.
Once again the Doctor asked me if I wanted to continue being treated if the infection spread. He said it would be unlikely that I would survive should I end up in ICU again.
Over the last few months and in particular the last three weeks I have become progressively more unable to function without extreeme fatigue and very distressed breathing. Sarah has to help me get out of bed and get dressed. She has to shower me as I sit in a chair as I cannot stand without becoming very dizzy and coughing.
I've lost a huge amount of weight and at the time of being admitted to hospital only weighed 55kg. Food had totally lost all appeal, but I still ate as much as I could, however it made no effect to my weight.
On Thursday morning the Doctors came and visited me on their rounds. They asked how I saw things going from here.
I told them that I felt I was in a downward spiral and that ultimately once I left hospital it was to progressively get worse until I died.
There was nothing anyone could do.
My bone marrow won't produce any blood, I live from one transfusion to the next. Within a few weeks I'll be too weak to even come into hospital for those. Death would follow within days unless I was admitted to hospital and even then it would only be until I faded away.
I think they asked the question so they would know that I had a grasp of the severity of my situation.
Things certainly looked grim. Any hope of further chemo treatment are curbed by the fact that I'm too weak to survive it.
I then suggested to the Doctor a plan that Sarah and I had discussed the night previous.
All my symptoms, the lung function, the weight loss and fevers were all signs of a relaspe of BOOP, the lung disease that almost killed me in 2009 until I convinced a young respiratory Doctor to treat me for it. My cancer Doctors had up until then (and like now) insisted it was the Hodgkins Lymphoma that was the cause of everything.
Our plan was to treat me with high dose steroids. If it worked we would see a response within a few days. I would rapidly gain an apetite and weight, my fevers would reduce and my breathing improve. We had nothing to loose by trying and everything to gain. After-all I was a dead man walking. I could fade away or have a few more good months (or longer) before possibly succumbing to infection from my steroid weakened immune system.
Basically I get to choose the manner in which I die. Slowly in a bed or quickly one day in the future from infection.
The Doctor (head of the oncology dept and regarded as one of NZ's top oncologists) said he would go away and talk with his team. Twenty minutes later and I had permission to start on 40mg of prednisone; the exact dose I had also decided on when working out our treatment plan. (Had they said no I was going to do it anyway).
It's now been four days and the improvements have been dramatic. It's early days yet though. Going by my notes from 2009 I should see my lungs starting to recover after about 14 days. (read my blog posts from Dec 2009)
It's starting to look like Sarah and I may have just saved my life, at the very least improved my quality of life and bought more precious time together.
You have to wonder though.. The Docs were sending me home to die, so convinced that it was the cancer killing me (it will in time) that they never considered looking at anything else.
To say we are pretty proud of ouselves would be a huge understatement.
Now to get home, eat, get fit and enjoy the time I have. :-)
..Ron
