And so they left me and my family came back and I was feverish and shaken and so scared. I had been nervous about the use of the port before she'd tried and now I was convinced that it was faulty and they'd have to remove it and put another one in. And it would probably have to be on the other side and then I'd have two of these scars (a matching pair!) and try explaining that to people.
My parents had rung David to let him know what was going on - poor soul - I think he must have been so scared - he wasn't in London and couldn't get down to see me that day.
After a while, Keith came by - he was his usual cheerful self - nothing seems to throw him. He massaged my legs and feet which was strangely reassuring. I think it's a human-touch thing - it's comforting and reassuring to be touched. We are tactile beings and we need to feel connected. Keith offered to lend me his CD player and a couple of relaxation CDs after I told him what was going on - he could see, anyone could see, that I was in a total state.
Eventually Ivy comes by - she's another reassuring sort but she explains that the chemosuite is really busy so we'll have to wait until things have quieted down a little.
So we carry on waiting - it's amazing how much you wait.
And the sun moves round and streams through the window and it gets hotter and hotter and I was already hot to begin with! One of the nurses finds a fan which stirs the air around a little.
Finally Ivy comes back - this time my parents are allowed to stay in the room. She has me lay down and she starts to feel the whole area around the port - trying to feel where it is and how it's lying - I am like the proverbial board, and so tense; I grip my dad's hand and he tells me to squeeze, hard. Every time Ivy presses or touches the area it's all I can do not to writhe and wince. It hurts, my shoulder is so stiff and I don't want anyone to touch it - but I let her. Once she thinks she's found the right place she puts the needle in - when the needle is put in it goes through the skin and punctures a silicone rubber bubble covering a chamber which connects to a catheter which is connected to a vein. The bubble is self sealing, so when the needle is removed, it seals over.
Unfortunately because mine is so new, I'm still bruised and sore so the pressure of the needle going in presses the base of the portacath back into an already sore spot. The needle goes in, but again, nothing is coming out. I'm freaking - I have this foreign object inside me - freaks me out already and in addition, it's faulty, it doesn't work, it hurts, it's all bad, bad, bad!
Ivy tries to move it around, pushing it down, moving it around slightly - it's excrutiating, every time she does it a shot of pain goes through my shoulder - I am brave, I lie there and take it and squeeze my dad's hand and try not to gasp too much but I can feel it catching and grating. My mum stands at the bottom of the bed - holding my foot. I think she must have found it very upsetting - it's hard to see your child in pain and not be able to help. After about half an hour Ivy says that it seems to have been put in quite deeply, that the stitches are in the way and that it's quite swollen. She thinks the problem is that these factors are preventing the needle from going far enough into the port - she wants to try a 1" needle. However, she'll put some Ametop cream - a topical anaesthetic cream on the area to try and decrease the pain somewhat. The cream has to be on for 45 minutes before it really takes effect so Ivy goes away for her lunch.
I can't remember that time really - other than a feeling of sheer and utter panic - I often described the way I felt last year as 'twanging with anxiety' and that's what it often felt like - I was so wound up and tense with anxiety that I felt like the vibration and sound and tautness of an elastic band stretched out as far as it will go. I was at snapping point for a year - I never knew if I was going to completely lose the plot from one moment to the next.
Ivy came back, she cleaned off the cream and put the new needle in - it still hurt. I think it was the underlying bruising and pulling of the stitches that hurt more than it was the needle going in. This time a little bit of blood pulled back out into the syringe but not much and it was hard going for her - it still wasn't really working. Ivy did move it around a little more, with no better results. Eventually she said that she wanted to stop - she could see how much it was hurting me, it wasn't working properly - probably because it was swollen and the stitches were still in. She would put in a cannula for the antibiotics and we'd try again another time. She didn't want to hurt me any more.
She redressed the portacath site and stuck my hand in hot water to bring up the veins and put a cannula in the back of my hand. Which she did beautifully, without a hitch, so that I barely felt it - why couldn't they have done that in the first place?
Nightmare nurse came back and injected the first lot of antibiotics into me - it felt cold in the back of my hand and up my arm but hopefully they would start to do their job.
They still had no idea where the infection site actually was.
This is part of the view I could see from my room.
The bonfire would be built of old branches and old bits of wood or old doors or planks or, I remember one year we burnt an old desk. But before you lit it you would always take the bottom apart a bit to check for hedgehogs who like to snuggle down in the pile of wood and would get burned alive if you didn't scare them away - poor things.
