Saturday, 28 April 2018

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

Thursday, 26 April 2018

The Isle Of Wight

A wonderful trip that deserves a proper post when I am strong enough.

Thursday, 5 April 2018

A Mixed Bag

Colin took me to my appointment today, bit of a mixed bag. They still aren’t sure if my spine is better or worse! I’m a complicated beast it turns out. Basically one of my tumour markers CA125 has risen a fair bit since they were last tested, however the other tumour marker (CA153) has gone down! They really aren’t sure what’s going on! So my onc wants me to have another MRI and a CT. These actually tie in with my regular scan checks anyway so all good. If the area at the base of my spine has got worse, then I’ll have to have some radiotherapy. Rads is fine though, I can defo cope with that.

My onc has asked me if I can be a case study! I’ll be written up (completely anonymously), as an example of not rushing into unnecessary treatment. So if another less savvy onc than mine had seem my brain scan and assumed it was mets, they could have gone straight to treating them. However, mine looked at my notes and considered my potential neurofibromatosis. Thank goodness she did.

Basically I have cytomas in my brain which are benign and are as a result of my NF1. She could have just assumed they were brain mets. So that’s why she wants to write me up! I’m interesting medically because:

- I was diagnosed young first time round, just 28
- I have secondaries
- I have neurofibromatosis type 1

Then we went up to Comet Ward for my denosumab, easy as ever, injection in the tummy and that’s it.