Four weeks on the Ward: An overview and my current status.

I've probably left my update on life on the wards a little too long, it no longer seems relevant with the passing of time.
However I should put it in writing so I have a record. :)

On Monday 31st May I was moved from ICU to the Haematology ward. I was placed in a really nice isolation room by myself, I couldn't have asked for better!. Total privacy and no body else around to make noises and disturb me. I'd landed on my feet quite nicely as far as accommodation was concerned.

I was however quite unwell and I had a lot of trouble just moving around. I still couldn't shift my body weight in bed and I could only sleep propped up and on my back. A trip to the toilet involved being lifted out of bed and placed on a commode chair that could be wheeled over the toilet.
It wasn't much fun and then you had to humble yourself and ask the nurse to help with clean up.
To be honest I always thought that I'd be embarrassed having to ask for assistance toileting but in fact I was grateful for the help. Embarrassment never came into it. Even when the inevitable accidents occurred.

As time passed I got strong enough to stagger around the room by myself and even move a bit more in bed as I was forever sliding down and needing to push myself up again to eat etc.

Some of the nurses were awesome, most knew that I was self medicating and just asked me what I needed. I would look after my low grade fevers with panadol as I saw fit and take medication for diarrhea if and when it was needed.
However one nurse had other ideas and treated me like I was unfit to look after myself. I'm sure she thought she was a doctor, however had she actually been a doctor she would have let me do as I pleased like my real doctors did.

I tried to explain to her that I'd been looking after myself for the last seven years and I would be doing so again the minute I walked out the doors upon discharge. None of it seemed to sink in.
One night she said I couldn't have panadol because it might mask an infection. I pointed out that as I was already being treated with IV antibiotics for infection and that I have historically run a low grade fever twice a day for the last three years, I wasn't about to suffer through the night with chills and fever just to make her happy (and me miserable).

She left for a while and returned to my room announcing that I was to be moved to another room as "they" need the bed. She then asked if I minded being moved? I said I did, but then why was she asking? it wasn't like I had a choice! So then she said they could move me later if I liked.
That really annoyed me as it proved they didn't urgently need the bed as she had stated. I think I'd just made an enemy by daring to challenge her.

However that was easily fixed the next day when I told my Doctors on their daily rounds that I would like them to make a note on my records that I could choose if and when I needed certain drugs. Problem solved! She now had to follow my requests, no argument.  :)

Life in a four bed room is all about compromise. You have to share the one toilet and try and keep your activities quiet, lights low at night etc so as to make life as easy as possible on the people around you. 70+ y/o Trevor in the bed beside me however took that to an all new level.
He had been admitted just a few hours earlier and had barely settled in when he pressed the nurse call button for attention.

Once she arrived he told her in a very loud voice that "someone" (me) had a radio on and it was very annoying. That someone was me and the radio was in fact my pre-paid TV. The volume was set as low as it would go and the speaker that resides in the remote control was placed on my pillow next to my ear. The nurse popped her head into my cubicle and strained to hear anything. She returned to Trevor and said that every patient had the right to watch TV and that the sound was set to it's lowest.

"Well how long is it going to go on for!?" asked Trevor. "As long as he likes" replied the nurse. It was 8pm, I knew I was going to have a right battle with this old coot. Next thing he's playing a radio on full volume as some petulant way of getting back at me while annoying everyone. I pulled back the curtain and asked that he turn it down and that I would set my TV volume to a level that was inaudible to him. I don't think he liked being spoken to face to face (I'd counted on that). Every now and then after that I'd speak to him through the curtain, making small talk. Always using his name as often as possible and he never bothered anyone for the rest of the week. Coward. Nuff said.

Do you remember the guy from my stay in 2009 that made annoying sanding and scratched noises all night long? I posted about it.. "A Tale of two Ronnies and a night in Geppetto's workshop."
Well what were the odds that the same guy would end up in the bed beside me after Trevor was discharged!!? It would be the middle of the night and all of a sudden there would be this sanding noise coming from his cubicle. I learnt to live with it this time. I was however very tempted to suddenly pull back the curtain and find out once and for all what it was that he was doing. I resisted.

Each day for the month I was there I got stronger and more mobile. I was soon able to make the short walk to the toilet and eventually even down the corridors. Then like now I relied on extra oxygen to help get me by. However the short walks were done without it. That was a real challenge.

For some time now I have suspected that I have a drug resistant strain of candida (thrush. From a weakened immune system and prednisone) and I had voiced this concern to one of my haematology doctors. He very much doubted that I did and said I would be dead if I had a fungal infection in my lungs. I tried to explain to him why I felt I had a drug resistant strain and that I did not think for a second that it was in my lungs. He resisted my attempts to have a culture taken and tested for drug resistance. Then after about a week of bringing the subject up I cornered him and explained exactly what my logic was. He caved in and agreed to have me tested.
It was such an empowering moment for me when he had to admit in front of four of his colleagues three days later that I was right and the lab results proved so. I punched the air declaring "Travis I was right!! you were wrong!!" his colleagues grinned while he stood there somewhat embarrassed. Win for Dr Ron!

About one week in I had another CT scan to check out my lungs and re-stage my lymphoma.
The results showed there was an improvement in my lungs but my lymphoma appeared to have not resolved at all. This suggested the expensive Adcetris drug had failed and I am now running out of options. It was the last thing I ever wanted to hear. It's a hard thing to admit but had I known this before my life and death battle with pneumonia in ICU the outcome may have been different. I don't mind admitting that I spent the rest of that day feeling more than a little depressed. But like always I soon refocused and devised a plan that I could share with my haematologist when he gave me the news officially.

It also meant that when I broke the news to Sarah I could do it gently and show her that I'd already moved on and was looking to our future and what options we had left. I think it helped. We had a meeting with Dr D'Souza the next day and because Sarah and I had already absorbed the news and prepared a plan for the future the meeting went well and Dr D'Souza agreed with our focus of getting as well as I could over the next few months and re-looking at palliative treatment options again then.

I was discharged to go home on June 7th. I spent most of that week eating all I could, trying to put back on some of the 8kg's I'd lost. I'd be needing that weight to help fight off any possible infection and to put me in a good position should we need to start more chemo anytime soon.
However I wasn't making any real progress with my health and it was decided that I should be re-admitted again just 5 days later. I made good progress over the next four days and although the Doctors said I could go home on the Saturday and stayed another day just to sure I was OK as it turns out I'm also battling a bit of bronchitis as well.

So here I am back home again, on oxygen, trying to get some muscle and weight back so I have the strength to fight the next stage of my battle.

I said to Sarah last night that this is the scariest situation we have been in since the battle began seven years ago. In the past there has almost always been a plan-B, a back-up plan that means that if it all turns to custard we still have another option. Right now it feels like we have none, I'm fighting with almost nothing in my arsenal, just a few long shot hopes of my marrow being OK for now.
I feel I've been painted into a corner. I have severe lung damage that precludes most hard line lymphoma treatments. I'm too weak to restart any sort of treatment anyway. My blood counts are appalling and I need a platelet transfusion every two days. This probably means I have bone marrow involvement but the treatment for that would be more chemo... ( along shot hope is that the bronchitis being a virus may be knocking back my blood counts)

Then before I we both got totally depressed I said to Sarah "Hey if there is anyone that can get themselves out of a painted corner it's me. I'll just build myself a set of skates with paint rollers for wheels!"  :) We laughed and moved on...

I have a meeting in the Haematology clinic next week. I'm hoping for a break, I think I've earned one.
Just a slight increase in my blood counts or news that my bone marrow is cancer free.. is that too much to ask?  ...Here's hoping!  :)

....Ron