Portacath Fitting

I had a really bad night last night, stomach cramps, sweats, severe nausea and (despite the domperidone) actual sickness. This is all thanks to the cape. I still felt sicky in the morning and had to force myself to get up and showered for going to have my port fitted.

At 11:15 Amanda, Lil and Grandma drove me to Royal Surrey Hospital in Guildford for my port fitting. We got there at 12:30 and Amanda took me in in a wheelchair. We checked in and then after making sure I was comfortable she headed off. I then waited about an hour before the nurse did my obs and fitted a cannula (using a dressing I wasn't allergic to - hooray)!

A cannula with a dressing I'm not allergic to!

So what actually is a port?
A port(acath) is a device which is inserted under the skin to allow easy access for IV injections and bloods. The Port is about the size of a walnut and has a chamber with a membrane that self-seals when punctured with the special access needles. Source: Royal Surrey County Hospital Info Sheet

I need one because my veins are shockingly bad. The right arm is bad anyway but still has the DVT (yay!), and the left arm is the one that has had lymph nodes removed so is a no go. Basically it will make my life a hell of a lot easier every cape cycle where I need bloods taken.

I then had to wait half an hour or so before I was taken down on my bed to the operating theatre. They took my obs and moved me onto the operating bed. Dr L explained the procedure and I signed the consent form. 

They then injected me with some strong painkillers and anaesthetic and the procedure started. I was kind of asleep and kind of awake. I could hear the team all moving around, bleeps of machines and touches on my body; but I couldn't feel any pain or actually open my eyes.

Next thing I know I'm coming to properly and I'm back in the room Amanda dropped me off in earlier that morning. The nurses bring me a sugary tea and a yoghurt. They make me wait half an hour, tell me to get hold of my lift home and then take my cannula out.

Post op selfie!

Amanda and Paul then arrive to take me home. We get into the car and Amanda has bought me some yummy fruit from M&S which I was really craving and I wolf it down! They drop me back home about 19:15 and Rob and I chill on the sofa until bedtime.

The Next Best Thing

7th June - I had a very painful night, I was dosed up on IV painkillers and was screaming out in pain a lot of the time. My back is so so painful. God this is so shite. 

Mid-morning I have a chest x-ray to see if the fluid on my lung linings is behaving or not. After my chest x-ray Michelle and Rob come and visit me. I have been missing Fagin and Poppy terribly and the lovely Michelle brought me a cushion as a pressie! She said if I could not go to the borders then she would bring them to me in cushion format! The next best thing - thanks so much Mish - you rock!

My awesome cushion!

That evening, the book club girls come to visit. Because I can't go to book club at whoever's turn it is, they bring book club to my bedside! We chat about the book for a tiny bit and then spend the rest of the time gossipping. Such a nice idea - thanks girls.

That evening I have the most dreadful sleep. In the ward next to mine there is a man with severe Alzheimer's. He calls out his wife's name over and over again. He also shouts "nurse, nurse, nurse" constantly. The nurses go to him and he asks where he is and why he's there. They gently explain but then 5 minutes later the same thing happens again. It's absolutely heartbreaking, but selfishly it's also annoying as i really need to sleep. I feel hideous saying that. He then asks to leave, many many times. He starts offering bribes to the nurses and to people each side of him. People tell him it's not possible and he starts to get really angry. He starts talking about killing people. He talks about his past as a "gangster" and says he is going to get his people to follow everyone in his ward and the next and kill them. He also says he is going to "start killing at random unless he's let out". Now I know this is his Alzheimer's talking and that he is unable to get out of his bed, let alone kill anyone, but it's still a pretty scary thing to be listening to.

8th June - Today I was determined to actually make a real effort with my walking. I manage to walk (with my walker) all the way to the end of the ward. I am bloody proud of myself.

Because of the amount of blood i keep having taken from me, I asked one of the nurses to find out what my blood type is. No reason other than curiosity. I'm 34 years old and have never found this out, so i might as well take the opportunity where I can. Turns out I am B+, the same as my mum .

Back in February, I had an appointment where I found out I had neurofibromatosis type 1. The doc at the time said it was highly likely I had it based on my skin. However they wanted to test me to 100% confirm. Today I got the news that they were somehow able to test the 3 tiny drops of blood they got from my shitty veins and it's been confirmed that the reason I have NF1 is due to a gene mutation. It changes zip, but I suppose it's nice to have the explanation. Dr P will love this for her write up of me for her case study!