Right Side Drain, Pleurodesis & a Heart ECG

11th June - The chest x-ray that I had on the 7th June shows that I have a right side pleural infusion which is growing in size. FFS. That means I now have to have a drain on the right side. Please life, just cut me a break! I tell the docs how nervous about this I am given the amount of pain the last ones have caused me and that I really want the top dog to do it . They tell me that the person doing this is the best at it in the hospital. This alleviates some of my fears. It gets to just before lunchtime and Dr A appears, ready to do the procedure. As before there is a lot of anesthetic, a ruddy great needle, and a lot of prodding and poking. It really hurts and one of the nurses gives me her hand to hold which is very sweet. Thankfully this is all in one place rather than the troublesome po

The drain in situ

The drain plus a random bruise that's appeared!

Ouchy 😢

Just as it finished, Mish arrived with some McDonald's nuggets! What a treat after hospital food for so long! LOL. The doc wanted to check the drain was working so she allowed it to drain out slowly. Once 500ml had drained out the doc clamped it for a few hours. It felt pretty weird and I felt short of breath for a little while. Mish was there for a good few hours though so we were able to have a good chat.

Once Mish left, the doc unclamped the drain and more fluid came out, it was a much darker bloodier looking colour than all the others had been. I was sat in my chair in quite a lot of pain, it kept coming in waves and would make it hard to breathe as it was so painful. I was trying to ride the pain out but the nurses spotted that I was in a lot of pain and told me to stop trying to be brave and to take painkillers as that's what they are there for! They administered some strong painkillers and something to almost knock me out so I could sleep through the pain.

The liquid coming out into the drain container

I feel like I need an "I was brave today" sticker like Oscar got today after his jabs!

I manage to sleep for a little while, Mum, Colin and Alex arrive and I keep whimpering and crying out in pain. It's so bastard sore. I'm allowed some more pain relief and again I refuse to eat because it's just too much effort through the pain. Alex goes off in hunt of something bland and basic and comes back with chips and baked beans! I manage to eat some of it.

I then have another xray to check the fluid on my right lung.

By the end of the day, my right lung drain has drained out ~900mls. I have to try and sleep overnight with this bugger in. At least it's coming out tomorrow. Huzzah.....

12th June - 

Happy Birthday to my amazing Mummy, I love you very much!

Through sheer exhaustion I manage to sleep. The drain has hardly drained any liquid overnight so after an ultrasound, the docs make the call to leave it open all day. I sit in my chair most of the day struggling to breathe. I have intense pain at drain site and down my neck. The pain down my neck makes it even harder to breathe. I'm not brave this time, I ask for all the painkillers I can have and I drift off into a deep sleep!

When I wake it's about 17:30, the drain has let out a total of 1,200ml. The drain now not coming out tonight 😭 There is nothing more at all showing on ultrasound/xray, however the team leaves at 6pm 😭 They don't want to rush anything or for it to be taken off by a not fully competent team (the on-call team). That means I am scheduled in for sure for tomorrow. I will have another ultrasound to 100% check there is defo no more fluid to come out, which Dr A (Queen Doc of doing this), has said there will not be. Then they will taken drain out and do pleurodesis all in one go. So by me pushing for the top people to work on me it means I have to wait as they are obviously in demand. However I would prefer to wait a bit more and be done perfectly rather than rushed and it go wrong or hurt more!

Karen my ward-buddy is leaving tonight and although I am pleased for her, I am bloody sad as I will miss her!

13th June - I have a bad nights' sleep, it's so hard to sleep with the drain in, I managed to rip the purse string suture, but luckily it doesn't bleed everywhere. At 09:15, Dr A arrives and mercifully takes the drain out which has definitely stopped draining liquid now. She then puts in the talc for the pleurodesis and then stitches me up. The pleurodesis makes me cough as it feels very tight in the chest as the lining starts to stick together.

My arm that has the PICC line is now enormous and the nurses take out the PICC and arrange for a scan.

Later that day, Mum and Colin arrive and then an oncologist comes to my bed (with my BCN) who I have never met before and tells me that I will be starting on weekly paclitaxel. She doesn't introduce herself or give me any sort of calming feeling. My back is immediately put up and I ask my BCN Tracey for some more information on paclitaxel and cape so I can make an informed decision. I am pissed off. How dare this onc who knows nothing of my story just waltz in and tell me what I am doing. It's my life and my decision. I think she can tell this so she makes a hasty retreat!

Then a lady comes to my bed and I have a repeat echo on my heart to monitor the effusion which last time showed 0.3cm pericardial effusion. Fingers crossed no more liquid has built there.

After Mum and Col have left, Caroline and Rosie appear and they bring pizza 😊

The Greek Dyno-Rod

⚠️ Epic post alert ⚠️

We had been in the Isle of Wight for a few days and I noticed I was getting more and more breathless.

Rob, the doggies and I went for a lovely coastal walk along the cliffs, but it involved scrambling, stairs, stepping stones, pebbles along the beach and steep climbs. The end of this walk was a steep hill, and at the top I was so breathless I thought I was about to vomit and/or pass out.

In the end, just walking from the bedroom to the toilet in our holiday flat was leaving me out of breath. Rob made me go to a local GP on the island and thank goodness he did.

I got to the GP and she examined me and then requested I do a blood test called a D Dimer as she was worried I might have a pulmonary embolism! They were able to do it then and there in the doctor's surgery. So they did the test. The result came back in 20 minutes. Normal results are less than 500µg/L and mine was 1,200! My heart rate was also about 135. That meant a trip to A & E.... 

We rushed back to the flat and let the doggies out to pee and then headed off to the island’s only A&E in Newport. We waited for a small amount of time and then after triage I was taken straight to the ER beds where I had to have a blood test and a cannula.

Then I had an x-ray of my lungs. Basically the result was that I didn’t have a pulmonary embolism but I did have something called a pleural effusion:

Pleural effusion, sometimes referred to as “water on the lungs,” is the build-up of excess fluid between the layers of the pleura outside the lungs. The pleura are thin membranes that line the lungs and the inside of the chest cavity and act to lubricate and facilitate breathing.

Image from pedilung.com 

So that explained my shortness of breath. Basically as the effusion grew larger, it meant there was more fluid in the lining. It meant it was getting harder for my left lung to expand and therefore more difficult for me to breathe. There was chest pain because the pleural lung was irritated. 

The xray results showed that I had 2.2l of fluid on my left lung! That’s over a big bottle of cola in my lung. Think how heavy that is. And I’m only 5ft1! No wonder I was breathless and sore....

The procedure to get rid of the liquid is called a thoracocentesis, basically they insert a ruddy great needle into the pleural space around my lung and then drain off the fluid. Sounds simple enough but pretty ruddy painful. Now you should understand why the post is named Greek Dyno-Rod!

The only drain option on the IoW was a slow drain and I would have had to have been in that hospital until Sunday. Our accommodation was due to run out on Friday, this was all happening on a Wednesday. We had the dogs so obviously would have had to have found dog friendly accommodation. Therefore we put our foot down. We wanted to travel home. The doc was unsure as if there was an issue on the ferry I would have had to have had a helicopter called out! He asked his consultant who gave us the okay to travel. As soon as we got the okay and they had contacted East Surrey to arrange the op there we were out of there!

We rushed back to the flat, Rob heroically packed it all up and we drove to the ferry terminal, crossing fingers all the way that they would let us on. Thank goodness they did.

We turned up bright and early at East Surrey on Thursday only to be told there was no-one there that could do the op!! As I was breathing without oxygen they told me to go away and come back the next day! So as we were on holiday still, we made the most of it and went and saw the new Avengers movie 🙂

Try again! Friday we turn up at East Surrey and this time they say we’re on the list and can come in! Rob and I wait for a while and then I’m sent for another x-ray. Normally when you have a scan of any kind the people taking the images are pokerfaced and say nothing. This time, the man takes the image and then says "how long have you felt this poorly?" I say "oh a few days, I know about the fluid as I have had a scan already". He then says "Ah okay, I was wondering! Most people complain about fluid at 300ml, you have 2,200ml; you're hardcore!"

I then go back to Kingsfold Unit, wait for about an hour and then go through to a side room. The doctor and a trainee explain the procedure, ask me to sign a consent form, give me an ultrasound over my ribs so they know where to shove the ruddy great needle and it begins!

The doctor gives me an anaesthetic and some oramorph and then puts the 15cm screwdriver type needle into the pleural space and attaches a drain. Loads of liquid begins to drain out and I'm taken to the recovery ward.

Just a small needle.... 

The liquid continues to drain out and then the pain begins. As the liquid dissipates, my left lung begins to reinflate. The pain is fecking hideous and I roar and shout a lot. I also cough continually as the air begins to fill back in. It hurts so much.

The doctor comes over and gives me some more oramorph. The morphine makes me feel groggy and I have a sleep. About an hour later I wake up and we're told we can go home.

Here's a photo of me smiling (wtaf!) with the drain in, the 15cm needle and the liquid, which I promise you is not pee!

Thank you Mish xx