Since the trial has stopped my breathing has got worse although the rest of my cancer has stabilised and my CA125 has gone down so its not all been bad news.
I saw my oncologist first thing Wednesday morning and he would like to put me on watch and wait and not give me any more treatment until my cancer progresses on CT. This is a bit scary as treatment had been slowing down the chylothorax and I was feeling very breathless. However I am under a specialist hospital for the management of my chylothorax.
We discussed the options that had been proposed for my chylothorax. I want to explore the embolisation further but was concerned about the radiologists lack of experience. My oncologist’s opinion was that it is such a rare condition that I am unlikely to find anyone locally with more experience and I should ask him about his experience of embolisation in other vessels. I felt this was a good idea.
After my appointment with my oncologist I had to drive over to see the Pleural Team. Thankfully they did not keep me waiting too long. I saw the consultant explained the situation with the trial and that my oncologist is hoping they can do something definitive to sort out the leak in my thoracic duct.
She did an ultrasound on my chest that confirmed it had filled back up again so they decided to fit an IPC so that my drain can be managed at home and I don’t keep having to have lots of painful procedures and also refer me to the consultant radiologist. I felt happier that there was a plan in place this has been dragging on since October.
The catheter was fitted into the side of my right chest under a local. I was able to drive myself home afterwards although one of the nurses did not approve of this or that I would be home alone but the doctor was happy to go ahead. The first night was awful as my side felt really bruised so I did not sleep much and I also felt really depressed.
The next day I decided to go to my mum’s she lives near by. There wasn’t a district nurse booked to see me until Friday and I rang the district nurse service to confirm this. However whilst I was at my mum’s the doctor rang me to see if I was feeling ok. They had drained off a litre whilst I was at the hospital but apparantly there was still quite a bit of fluid in there. She wanted to know how I was feeling and if I wanted the district nurse to come today. My breathing had eased and I wasn’t in quite so much pain and I also wasn’t at home. Then the district nurses rang me at 3 pm to say they were at my flat so I had to explain to them where I was and that I was feeling ok. I also said that I had not been expecting them until Friday.
Thankfully they came back Friday and took off another 500 ml. There was a bit of confusion about how we would dispose of the bottle and it’s contents. It is a new system for them and the bottles are completely sealed so not easy to empty down the toilet. I naively assumed they would take it with them but I guess it would end up stuck in the boot of their car whilst they drove round seeing patients so it sat on my living room floor in a bag most of the weekend.
Another district nurse came on Sunday and took off another 500 ml but she thinks it is starting to taper off so did not need to come back until Tuesday. I mentioned that I had a GP appointment for some bloods Tuesday am and I told her the time. She started to ask me if I could go to a clinic for the drain but must have thought better of her question. I guess I am not her typical housebound patient and everyone always says I look well. I don’t think I could have coped with driving to the other side of Manchester every other day.
I am hoping that is will start to taper off on Tuesday and we can start to go longer between drains. I really want to go to Sharon’s funeral on Thursday and I am already stressing about the hour long drive. I never used to be afraid of going places on my own until all this happened.
The district nurse did not know what to do with the bottle either so now I had two bagged bottles on my lounge floor. The hospital had said ask the district nurses about their clinical waste disposal or cut the tops off the bottles empty the contents down the toilet and put the empty bottles in the genreal waste. That is what I have ended up doing I cut the blue valves and emptied the bottles down the toilet. The fresh warm sample was easy enough but the bottle from Friday had cooled down so the fats had separated from the liquid so that was harder to empty as well as pretty disgusting.
Operation over slowly mending!!!!
