The Curious Case of the Exploding Expander

Last week was one of those ho-hum, meh, underwhelming weeks. At least, it started that way, but didn't end very well at all.

On Tuesday I had to go back to the Royal Free to have the registrar check the expander that has been giving me all this grief for weeks. She poked around my chest (that was weird), and decided that the expander has shifted to the right. How exciting, I thought: I will have one breast facing front and one facing back, if it keeps moving. I said that-but she wasn't amused. She was even less amused when she couldn't locate the port on the left side. I asked her where it could have gone. Did it do a runner? Was it going to be found somewhere near my left kidney? Ah, no-no sense of humor, I guess. And I wasn't very pleased, either. So we just left it, since I had to return and see the expert, the surgeon, on Thursday. Tuesday was, for me, a wasted journey.

On Wednesday I was due to go to the London to have my annual gastroscopy. Once a year I get one hosepipe shoved up my back end, and once a year I get a hosepipe shoved down the other end. This is all to see if there is anything major to worry about, since one of the problems with CVID is that it impacts everything to do with the digestive system (and is related to colon cancer). I was fasting, and on the way to the hospital, when I had the most unbelievable pain in the right side-I really thought the right expander was rupturing. It was so painful I could barely breathe. And-I was at the Royal London, so there wasn't anything I could do except wait it out and hope it would stop-or explode,whichever came first. After about twenty minutes the pain subsided. Finally. Nothing flew out of my chest, so I figured I would survive until the next day.

I waited for hours for the hosepipe; everyone was running extremely late. By the time I saw Sean (what a hero-he apologized for the severe delay, something that is unknown in the NHS!), I had fasted for nearly twenty four hours and my stomach was shaking hands with my backbone.

The test took about half an hour, some biopsies were taken-and I chose not to have sedation, because I figured I would be there forever if I said okay. So it hurt, but I was glad in the end. Nobody even offered me a glass of water. That is the Royal London for you-so I am glad that I went over to the Royal Free, where they are much more civilized. I'm keeping the gastro and neurology teams at the London, though. Sean and Dimples have known me for years, and I have every confidence in them. I don't sweat at the idea of going to see them, which I did with the immunology team.

Thursday I went to see my surgeon. Honestly, if I got paid for all the mileage I do each week, going from one hospital to another, I could go to the Bahamas for six months.

Steve had a poke around, said he is pleased with the expander-and that it hasn't ruptured, and has only moved slightly, so I shouldn't worry- yet. He inflated the left side by 50mls of saline, and wants to see me in six weeks. If the right side deflates in that time, we will decide what to do then. So that was that, and I was very relieved. Plus, I have cleavage. What a bonus.

Then I got hit by the black dog. It came out of nowhere and bit me right in the backside when I wasn't looking. I've been bitten before-so many times you would think my butt would be smaller. Too bad. And for two days I didn't really go anywhere, although I forced myself to walk. I had to walk. It was very unpleasant-but I knew that it would pass if I just hung out with it for a bit and then made myself move, take some action, walk, whatever.

Yesterday there was a Patients' Day at the Royal Free, and I went along and saw several people I knew: immunology staff, and immunology patients, too. We heard the latest research into CVID, the newest pumps for immunoglobulin delivery-and a talk about depression, which is one symptom of CVID (one of many). Gut problems, chest problems, depression-all these subjects were covered really well, and we had lunch, too. Even the coffee was good-and you all know what I think about British coffee. Except for Starbucks (and my own), you could use it to strip paint. So when I tasted the brew I was very pleasantly surprised. That in itself cheered me up.

Today I still have the remnants of the blues. We have rain-lots of rain, lots of wind, lots of cold-after a beautiful weekend, too. But when you know the reasons behind symptoms, they are easier to handle. One person out of every 50,000 is born with CVID. That translates to 20 people out of one million. Some idiots sniff and say, oh, that isn't so rare. I'm one of the twenty. Trust me when I say that yes, it is rare! And, like the Energizer bunny, I just keep going. I've come this far-I'm not ready to quit yet. I want to irritate people for at least another 30 years or so...