Saturday, 14 February 2009

100% Wipe Out for Mesothelioma

Its been quite a journey these last 4 weeks and I am pleased that I have waited till now to write about the operation and the aftermath. I must start out by saying what a committed ward of staff I came across, from Joan the HouseKeeper to John Edwards the Surgeon. In the two weeks I spent at Sheffield I only came across one nurse that shouldn't be doing the job she was. That aside here we go.

I went down to Theatre about 8.30 this was to get the needles and epidural in place, I guess this took about an hour in all and I can't remember anything else of the 15th until Hubby and Lorraine were at my bedside in ICU. My next memory was the pain at 5.00am and I remember wishing I hadn't gone through with it and I just wanted to die, every part of me hurt. Hubby told me that all I kept saying was "I'm hurting". At 7.00am I was hoisted into the air and sat in a chair for a few minutes this was extremely painful and I met my physiotherapist for the first time, a tough cookie called Lucy. They put me back to bed and transferred me to PCU at noon, my new home for 5 days and 4 nights. Alot of this is a blur I had 3 drains and plenty of cables and wires plugged in. My blood pressure kept dropping and every 15 minutes your guardian was checking you over. This was when I heard the good news that John (familiar terms now) had removed all the mass together with my diaphragm and pericardium. I knew he had removed the diaphragm because of having a tube down my nose (most uncomfortable). The operation itself had taken 8.5 hours and the whole operating team were pleased with the results. John (bless him) did get me some photo's of what took place.

Its amazing how every 12 hours your body can improve, I counted off the 12 hours and could see the difference. The tube came out on Pete's shift. How embarrassing having some 6' Dark haired blue eyed hunk of a nurse pull a 36" cable covered in yack from your nose, this was a strange and hopefully never to be repeated experience. Laying in this bed for hours at a time I often gave thought to those who are involved in freak accidents and find themselves in a hospital bed, in pain and confused, at least I partly knew what to expect but for accident victims it must be terrible.

My first night in PCU I could not get comfortable at all, my legs ached, my back hurt where the tubes stuck out, my bum was numb, Infact the only things that didn't hurt or ache were my fingers and toes. If you are contemplating this operation make sure you gain a few extra pounds, me I'm skin and bone so everything hurt, I swear I could feel the pipes inside pressing on my ribs, blood vessels and nerves. I could only drink 30mil of water an hour and my mouth was dry but caked inside.

Why do things happen at night, during the day I would feel fine but come night time my body would start to hurt more and I knew it would be along 12 hours. On Night 2 in PCU the line into my vein decided not to work correctly, this records blood pressure and other bits and pieces, its the vein you can't see but can only feel. The SHO decided I would need a new one I told him how terrified I am of needles, but he assured me that I would be numb as they had to mess around to get the needle in place. The local injections hurt but once they started to work I held the Nurse's hand, and discovered that even at my age there's nothing wrong in showing weakness. I said tongue in cheek to the Doc you only have 30 minutes to get that in after 45 they gave up, the needle would not go in at the right place and they were taking no chances in causing infection etc by prodding endlessly into my wrist.
Day three one of the chest drains came out and was I pleased I thought it would make a lot of difference to the pain but it didn't, I also had a bout of diarrhoea, it was just as John was leaving my bedside after discussing the tube removal and progress. I asked for a pan but oh I was unlucky and the smell was unbelievable! No where to hide either. Thankfully it wasn't any virus just a build up of all the pain killers and drugs given over the last 96+ hours that hadn't come away yet! Embarrassing for me was the bed bath that followed then handing over the pj's to hubby.

The time in PCU did pass as a blur, I use to be sat in my chair and do bike exercises, this was to get my lungs expanded, I'm sure sometimes I would sit for an hour or two just pushing the pedals round. The epidural came out so did the catheter. I must be the only person who wanted to go but couldn't, I sat on a commode for an hour, then the toilet for another hour, then had lunch and tried again, still nothing but all the time the pressure was building up. I turned the tap on in the toilet thinking that would spur me on but all it did was make me more aware of this pressure build up inside. I had to be re catheterised, did I care not blooming likely, Just get that pipe in there and give me some relief and by god did it. I had a water infection. So for another 24 hours I was catheterised, did I care no, it was the only wire that didn't bother me.

My first night out of PCU and no epidural saw me lifting in pain, and I mean lifting. There was no way I could get comfortable, the staff didn't seem interested in anything other than making themselves tea and toast. I was out of bed every hour during the night but I could only be drip fed pain killers, whereas if I was at home I would have dropped 40 mil of severdol, if that hadn't done the trick in 20 minutes another 10, by the time morning came I was lying on the floor hugging a foot stool. Thankfully someone from pallative care came over but I was still only allowed a small hit of morphine everyhour instead of a large dose to get ontop of the pain. It turned out I ended up taking something like 600mil of morphine in that one day. This is always a problem for anyone with cancer who is on morphine, your daily balance needs to rise when you've had surgery and also you need a much higher dose to get ontop of the inital pain, once there you can drip feed 20mil to 40mil an hour to keep ontop but you rarely find you need to take anymore for at least 4 hours.

When I moved wards I finally got to meet Pat, who had gone through the operation the Monday before me. It was good to actually meet someone else who felt like that had been ran over by a bus a few times. Pat actually never complained of any pain, so it shows that we are all different. Where I was in agony, she suffered nothing, whether that is down to the amount of treatments my body has gone through and the fact that Pat hadn't had any I don't know. Pat unfortunately had to go back down theatre and that's when she did confide that if she had had to do it within 48 hours of the first operation she didn't think she would pull through. I remembered the fear of being sick and if I had been I would have been rushed back into Theatre and I knew what she meant as I doubt I would have made it through another operation.

I think I have written enough for now I'll let you all digest this amount and will continue on a new posting another day.