After the long journey to Leicester, In the UK anything of 5 hours round trip is a long journey, I felt terrible the next day. I didn't even muster the energy to get showered but opted for a bath and as late as 4.00 in the afternoon. It was like watching a beached Whale thrash around in low tide. My day was bad but I had to hang out for one more day, D Day, no not the end of the war but Drain Day.
The alarm went off at 7.10, I had just got to sleep at 5! I felt lousy but thankfully I didn't throw up bile like the day before. Gary rang the ward at 8am to be told they didn't know whether I was on the ward or not so would ring us back. In the meantime I went to shower, I heard the phone ring then I heard Gary come upstairs, he was sobbing and my heart stopped. The relief of being told we could go brought his emotions to the surface.
We arrived at 9.00 am, the procedure was booked for 11.00. We sat in a little interview room opposite what was my bed. At 9.45 am I was getting anxious, although a few nurses had kept walking past not one had looked in our direction. So I went out to the nurses station, no one around. A nurse kept walking past but ensured she never once caught our glances. I went back out when I could hear more voices, this was 10.15, lots of people were talking to each other, all different coloured uniforms I kept my eyes on one and she finally asked can I help you. I explained I was in for a procedure at 11 but as yet hadn't been admitted. She took my name and said go back to the room. Within a couple of minutes a nurse popped her head in the door and said that's your room, pointing to the side room which had been empty since we had arrived. She said she would find my nurse and off she went. A nurse then came by said her name was Kim and she was my named nurse, she said she would be a few minutes then went.
I looked at Gary, time was ticking on so I suggested maybe he should go to radiology and let them know I was here just in case they thought I hadn't shown up. On his way out he saw someone and asked if Radiology knew I was here, the lady assured him they did. As he came back in another nurse came and said that they had been expecting me at 8.30 and why was I late? Another right hand and left hand!
An Auxiliary then came with the equipment to take my vitals, BP was good at 111 over 74, temp my usual 36.5 and pulse was high (nerves). I still hadn't been admitted. Another nurse came with my operating gown and said can you get changed your going. I still hadn't been admitted but who cared. I was wheel chaired down to another ward, a outpatient procedure ward (still can't understand why I couldn't have just been admitted on this one?). The nurse introduced herself as Wendy and that the two ladies sitting in the corner would be coming into the procedure to watch. No asking mind, I was told! They were the representatives of PleurX the manufacturers of the permanent drains. I said as long as Gary comes in I don't care, she gave a look as to say No he can't.
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| My nerves starting before the procedure |
Dr D arrived and told me how they would fit the drain, I wish I hadn't asked! Gary was dressed up in the full X Ray department cover, the iron vest, the thyroid cuff and then the blues for the sterile environment we would be in. The procedure is done where there is a large X Ray machine, lots of video screens and an Ultra Sound machine. The room was quite spacious.
I laid under the x-ray machine, nearly everyone stayed in the room and not the other side of the glass, I saw the nurse loading up the needles, long needles being filled with lignocaine and felt my heart sink. The procedure is similar also to having a hickman line inserted.
I am not brave anymore, I have endured countless operations and procedures, gone through pain that no one should have to both with operations and the pain of the cancer itself, and it has taken it's toll. Never again could I endure a tooth repair without an injection, that girl has gone. But in order to make a start you still have the initial pain of a needle.
My skin was so tight with the fluid building up behind that even a pin prick would hurt like a blade and boy did it, as the needle went deeper he released the local anaesthetic. Once about an inch in he stopped. He had already ran the scan over me and marked out a place where the incisions would go in and the tube would come out. As we were preparing he told me the entire procedure, so I knew what was to come but at each stage he told me again. The next dose of lignocaine went in, this time the needle having to push through another cavity wall, and yes I felt that initial push, Gary's hand nearly lost a thumb but I breathed through it as best as I could. There was Dr D, his nurse, a radiologist, the two ladies from PleurX and Gary. All watching me squirm in pain. How embarrassing but I had to squirm it hurt like hell. Stopping and starting a few times until Dr D was satisfied that I was numb enough. An incision was made where the drain would be inserted an another where the tube would come out about 4 inches above it. The drain is approx. 6" long with lots of holes in to collect the fluid, the tail then comes out which is what is connected to my drain bottle. The drain will lay inside the stomach, the tail needs to be tunnelled into the abdomen lining to hold it in place and ensure it doesn't get pulled out. This was the part that hurts.
Starting with, all Gary could describe as, a knitting needle, a tunnel was started from the first incision to the second, as the tunnel was enlarged a larger needle went in, one after the other, and boy it did hurt. I don't care what others may think of me but it hurt and I screamed out a couple of times, cried a few times and worst of all my leg kept kicking out with pain, not good when someone is trying to keep a instrument inside a membrane and not go through the tissue. Never once did Dr D loose his cool. Once the tunnel was large enough to contain the tail pipe the whole thing was inserted, but this was the tricky part A covering is over the entire tubing, this has to be peeled, like a banana. But it is stripped while inside, that did make me yell out. The tears of pain ran down my face and I kept my head turned to the side so no one could see how much I was crying. Poor Gary's hand was red, his thumb nearly dropping off.
After the needle had reached though into my abdomen Gary told me that a volcano started erupting from the hole and the fluid was bubbling out. I asked if I was bleeding because I could feel the dampness, he said it was the fluid, I couldn't believe how hot it was, it burnt my skin.
The drain was quickly connected to a bag but it filled so fast it had to be tapped off, they wanted to record the fluid and in the room there was no where to empty the bag.
I would mention here that Gary did exceeding well too, he is claustrophobic and to be dressed up like a surgeon made it difficult for him, especially the mouth covering, on top of that he was extremely hot and nearly passing out with the heat, then having to watch some one cut me with a scalpel and cause me pain, he should be given a gold star. Wendy, Dr D's chief nurse told him that many partners had been wheeled out for passing out while watching, hence she never allowed people in anymore.
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| The final stitches, thought they would put one of those caps like an aerial cover round it! |
A few tight stitches round the tube itself and to close the original insertion point and I was ready to leave the room. My throat was dry from the screams I held back inside it and I felt extremely weak but I decided not to tell anyone as I wanted to be back on the ward and maybe have a quick nap.
This procedure isn't an easy one, I know Dr D is famous for putting stents into livers so chemo can still get in for liver cancer etc and he has done many drains but during this one he and the reps from PleurX kept talking about different ways of tunnelling and inserting the thing. I guess each one is work in progress, finding a different way of putting them in without hurting too much or maybe they review different ways to see who does it the best.
I was pleased it was over but I was sore. My nerves in my hip hurt during the procedure, whether the pressure from the fluid or his instruments kept catching I didn't know but that caused a lot of grief during the procedure. My right shoulder hurt each time I breathed, like some one had put a hole in it and was letting freezing cold air go right through my bones. In fact it still hurts this morning.
I said, tongue in cheek to Dr D 'You never visit me on ward' as I was leaving, as each time he has put the drain in I have been left in the hands of the ward. He smiled, he told me he never got out of radiology!
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| Relief its over! |
We got back on the ward, the young auxiliary, Holly, came in to do my obs, she emptied my overfull bag and told me she would be leaving shortly, it was 1.10 and her shift would be over. Funny I thought, I heard my named nurse tell her to take my obs every 20 minutes, who was then going to look after me. Gary went off to find me some drinks while my BP was done. She said shout when the bags fills up and she would empty it. She returned with a plate of egg sandwiches and a cup of tea and had just left when I had to shout, as I had moved the table my bag had filled already. I tapped it off as she emptied it again. Still no nurse!
I could feel the pain getting worse so took some morphine and tapped off the bag, it had filled another 200 and I could feel it dragging. I ate the sandwiches then the nurse appeared, she said I understand you are staying in. No, I am going around 3 pm I said. She paled, she now had to admit me and discharge me. She wasn't happy and disappeared again. I hadn't tightened the tap properly and noticed the bag was still filling, although slower, another 400 ml was already inside it. Gary came back, he had seen the ward doctor and asked if he would mind discharging me, Dr D had said once I had drank and had something to eat I would be better at home, no risk of infection and better to get me home while the pain relief was still working inside.
The ladies from PleurX then arrived to explain how to empty the drain and how everything works, we were given a cd pack, 2 drains and as they were chatting the nurse came in then left, then Dr D walked in. I nearly died, so did the nursing staff on the ward. The nurse decided to come back and dress my wound and undo the bag while he was there, was she trying to get brownie points, after all we had never really seen her! She couldn't do it and had to find someone else, so left again. We chatted and he wished me well. He told us any competent doctor would be able to remove the drain when it wasn't required. I said if you think I would remove it to go back through it again if the fluid came back he must be joking. I will miss not seeing him again, he has a great sense of humour as well as an excellent doctor\interventionalist radiologist. (He is also head of Radiology at James Cook). Shame he doesn't get to interact more with patients but that's the nature of his job.
I still wasn't admitted nor was I really discharged. The ward doctor popped his head in the room said he would send a letter to my GP and left. Gary left me to go and bring the car from the far end of the car park to the front doors of the North Entrance and I slowly walked the corridors.
We arrived home to two happy dogs, obviously Bear was kept at arms length and I crawled onto the sofa. The pain was terrible, my shoulder and side both radiating different types of pain. I took a good dose of morphine and drank plenty of fluid.
I didn't know what I wanted to eat but voted for Fish finger sandwiches, what has happened to the fish, it didn't taste like cod nor did it look white! I ate must of them, Bear and Lexi helping me out.
I took tamezapam for bed along with my MST and some paracetamol tablets, thought I would try them for a change. No more water tablets, maybe I will put back on some flesh!
To find more information about how these drains work please visit their website, it may be helpful if you are having the same problems I have had.
So a new dawn begins for me. I can control the fluid draining, I won't need to be crushed anymore by the fluid and hopefully once treatment starts I won't need to drain.
I have a great big pipe sticking out of me so I doubt I will ever be able to wear flattering dresses again, ok I still have a little vanity about me. I used to be proud of having such a nice figure at my age. But baggy clothes are in so at least I will be in the fashion, not that I have really bothered with fashion before.
I have to hope the pain will subside sooner than later, because it is agony but the pipe has to settle, my body needs to grow around the tube and accept it. As I went through the pain of this being tunnelled into my flesh I thought about Tom, Tess and Colin, the only 3 people I know with drains and I wonder how they did this in their lung. I have had plenty of drains in my lung but never ones that are buried there to stay inside. Was it the same harsh procedure I went through. I said during it I wish I had taken some diazepam but I was worried about my BP dropping. Dropping 4.5 litres in less than an hour is dangerous and if my BP was low to start with then I would have needed a cannula and fluid pumped in. No Thank You.
Sorry it has been so long but I have detailed out everything I can think of, I hope no one else needs to go through this but to be honest the fluid is terrible and if this is the only way I can live life without being in crushing pain every 2 weeks then it is the best route. I don't understand why so many others don't have this option given to them for ascities.
My stomach has shrunk but not enough, I don't want to drain today as my wound is too sore, also I need the district nurse to come too. She is responsible for ordering the drains so I hope she is going to arrive today. 2 drains will not be enough if I need to drain tomorrow, I think I have another 3 litres waiting and that is building each second of the day. Not only does my body have to fight the alien cancer it will be fighting the silicone that now resides in my body, I will also have some bruising inside so have quite a lot of swelling.
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