The 12th of July.
Any day in ambulatory care means getting up before six which is not ideal, but necessary. I was last to arrive in my section, but that didn’t matter because I was third on the list, so there was no rush with my admission. I didn’t expect to go down until about eleven, so I was very surprised when a porter arrived at twenty past ten. The nurses didn’t even know, so I had to quickly go pee and put my gown on.
Across in angio, I said hi to all the team, and Mr. Singh (who put the PICC in) came to consent me. Then Andrew came and we had a chat about the plan – it was left unspoken that this is our last shot.
On the table, I was prepped, covered, cleaned. It is a testament to the greatness of the team that I have to be essentially naked in front of the whole room for a while but at no point did I feel undignified or unsafe. My groin was ultrasounded to find the vein, but there seemed to be trouble getting into it because I heard a lot of talk about scarring, then a dilator had to be used to hold it open so the sheath could go in. Then there were issues with the wires – people had to keep getting different ones from the wall. I think it was to do with the length or the stiffness? They were having to get all the way from the groin up to my neck, which is pretty far. They did a couple of runs with the gadolinium to check everything was in the right place, then it was time for fun and sleepy drugs. I got the nice, warm fuzz, then the discomfort of having balloons inflated inside you. I think they did maybe six inflations in total? They used the two biggest balloons available, in one site in the neck vein, one in the SVC and again a little bit further down. Then everything came out, and I had the awkward five minutes where a man leans heavily on my groin to stop the bleeding and there isn’t much to say.
I went into recovery about twenty past twelve, where I had to stay for half an hour to make sure I was fine before they’d take the PICC out. When it came to that time, the nurses had changed, and the new one hadn’t done it before, so we had to grab a doctor to do it. The nurse watched closely, but there isn’t much to learn – just pull it out, then put some pressure on the hole. Then the nurse was able to ring the ward, where a student nurse said someone would come for me. Forty five minutes later, she rang again, and the staff nurse said she hadn’t passed on the message, and came straight away. I was fine; another nurse had shared her Jelly Babies with me and I only had twenty minutes of lying flat left.
Back in ambulatory care, I asked Mommy to get the flowers and chocolates from the car because Emelda and Tracey would be gone by the time I’d be able to, so she delivered those and then got me some coffee and a sandwich, which I was only too eager to get into my face. Then we just had two hours to kill, so I was checking the tennis and talking to Mommy about what had happened in angio and what we do now. I have to keep my arm elevated a lot and try to squeeze the fluid down. We’re going to see if the massage people at the chiro do lymphatic drainage, and if that could help me. I’m also considering acupuncture. Anything that will get this swelling to go down. Anything at all.
By half past four, I’d got myself ready to go, so I was given my discharge letter and we were out of there. I had a ticket to hear Matt Haig talk about his new book, How to Stop Time, at Waterstones at half past six, and I needed some dinner first. I ended up having a cinnamon crêpe and a chocolate milkshake because I am an adult and I can.
Because of the wheelchair, I had to use the lift to get to that second floor, where the event was, which meant I basically jumped the queue. However, I chose to sit at the front which was good for watching the interview, but then I was at the back of the queue for the signing. However (and I honestly don’t know why this happened), some people near the front said I could go in front of them, so I got out a lot quicker than I might have. I just wanted to tell him how much I loved Reasons to Stay Alive. I’m so excited to read this new one.
The 13th of July.
Trying not to get sad. I’m pretty sure the venoplasty isn’t going to have worked. I’ve spent most of my day looking for effective treatments for lymphoedema.
I had a chiro appointment this morning, which I was very thankful for because a) my neck has been really clunky recently and b) I wanted to ask about the massage/lymphatic drainage thing. Turns out my neck muscles have been recruited to help me breathe so they’ve got all stiff, and Trine’s not sure if they do this but she’ll find out on Monday.
When we got back, I wrote a long entry about yesterday, watched two rather short Wimbledon semi-finals, and did a lot of internet research. There are the standard treatments of drainage massage and compression garments, but honestly they don’t sound very effective. There is a chance that acupuncture may have a small amount of benefit, but I’d want to know somebody who’d had it, not just pick a random practitioner. Or there are surgical interventions, and frankly I am leaning towards those. I will try anything. I just want my arm back. I want to not feel deformed.