Groundhog Day:it all repeats, and repeats, and repeats...

I felt all week as if I've been in my own little version of the film Groundhog Day. There has been a "sameness" to every day in that I seem to be doing the same things over and over again, like a drone. It's been more than a little disconcerting.

After I posted last week, I went to see Dr. Dimples. I thought (based on what he told me two years ago) that this time he would discharge me from his clinic, since there is nothing else his team can do for me. So last year, he referred me back to Queen Square, and that whole scenario is one that you already know. But, wahoo (or words to that effect) I was quite mistaken.

I told him about Dr. Davies, and the repeating of the 2011 tests, and the fact that improvement was up to 58%-and he seemed really pleased-jovial, even. He is keeping me in the clinic until March, when we will probably retest again at Queen Square. He wants to keep note of my progress. So do I, in fact.

So that was a positive outcome. Unfortunately, there was a flip side: it rained. Heavily. I got caught in it, and it was terrible. I could hardly walk up the road, it rained so hard. The Brits call it "pissing down"-maybe it's crude, but so descriptive, and so very appropriate. And believe me, I waited to see Dimples and I was sitting in the clinic, cold, wet, peed off, and soaked to the skin. When my name was called, I didn't walk down the corridor-I sloshed. I left a water trail. By the time I finally got back to North London I was-still wet. It was definitely not fun. And on Wednesday it was just as bad. I rushed to walk (or, rather, stagger, which is all I can do in the rain) in the morning, and I just got in my door as the skies opened. I like rain. I like to watch it. I like to watch it when I am inside and warm and dry, and I don't have to go anywhere. And, anyway, my clothes were still wet from the day before. So I wasn't very cheerful on Wednesday.

On Thursday I went along to see Steve and have him check the offending expander. Sure enough, it was misbehaving; after only a week, that right side was already showing signs of sinking. I was sinking, too. I kept thinking that I might have to go through the whole procedure again.

We talked it over, and Steve decided to inflate that side again, and continue to inflate weekly if necessary. Eventually we might need to remove the port, and see if the expander keeps contracting. So I have one decent looking breast and one that is, to put it mildly, concave. Ick. If we remove the port and the thing keeps sinking, then we will need to replace both expanders with permanent silicone implants. At least I know what level of pain to expect. If that has to happen, I must remember to request regular visits to the bathroom. That will save me from catapulting myself off the bottom of the bed and nearly knocking myself unconscious in an effort to avoid using those odious bedpans!

Tomorrow marks six weeks since the surgery-and I am so happy that it is now, and not six weeks ago. I can only wait to see what happens when I go back to the clinic on Thursday.

I have started to make a conscious effort to change the way I do things. I take different routes to get to wherever I need to go. I even start the day differently. I've been trying to mix things up a little. I have had terrible trouble sleeping, because that right expander makes things very painful, so the pain keeps me awake at night. So does trying to move around to find a comfortable position. There is no comfortable position. Even breathing causes pain-but I think I will just have to deal with it. Or-I will just have to live with it.

I've started doing all my vestibular exercises again, even though we have had a lot of rain, and even though I've been a bit demoralized by the fact that I have had a major setback in the balance and vision areas. But I've had a setback. It was to be expected. I just need to understand that I will regain what levels I've lost. It'll take some time, and a whole lot of effort. But I've done it before, and I will do it again.

One thing I have been thinking a lot about this past week is the fact that I have been so busy trying to survive over the last five years that I forgot to enjoy life. And-I know I pulled the genetic short straw, but that doesn't mean I shouldn't enjoy whatever time I have left in front of me. I want to get to that truckstop in the sky (but not for many, many, many years) and be able to look back at my life and say that it was not just traumatic, but also filled with joy, good times, good people-and even if one person reads this blog and realizes that we just have to move forward, and never give up, no matter what the circumstances, and be happy anyway-I will have done something for someone.

As for that truckstop in the sky, they'd better have a huge stock of Kettle Chips. And Starbucks. Otherwise I'm not going.

Just when you think it's safe to go back into the water...

Murphy's Law reached up and bit me hard on the backside-and I didn't really expect it, either. Frankly, a shark would have been more interesting-and probably more entertaining. It has been a stressful two weeks since I last posted. Ugh.

I had a really bad time with balance and vision-really bad-I seem to have regressed a lot. I did expect it-in a way-because surgery was less than five weeks ago, so I don't know what I was thinking when I decided to do everything I had done before the surgery. What an oops that was. I'm cut from armpit to armpit, so I couldn't raise my arms, or lift anything of any consequence. And there was a lot of pain. So I spent a lot of time resting-which, of course, made the balance worse. Another oops moment.

Last Wednesday-exactly four weeks post-op- I had to go to Queen Square to see the physiotherapist. She was great-but couldn't believe I was actually there, since I was staggering all over the place. She also was amazed that I wasn't really depressed about the setback. So we talked about that, and she had me do a whole series of exercises. It turns out that, although I wasn't able to do any of the exercises with my eyes shut, I was better at the other ones than I was when I was tested in March. I can tell you how pleased I was to know that; it means that I am still improving, even though I think, on many occasions, that I am moving backwards rather than forwards. Time to be cheerful (ish).

But-Thursday was about as welcome as a shark attack. I went along for my fortnightly immunoglobulin infusions, and that was okay, except that my usual nurse was on holiday, so someone else handled it-and started an hour late. Bummer. And then I went to see Steve over at the surgery clinic. And was I swearing at Murphy and his bloody law by this time, or wasn't I? The reason for this is: the whole side of the expander on the right side has collapsed. There is a crater where, as far as I can determine, there should not be a crater. So I waited over an hour-again-this being the NHS, I was glad it was only one hour, not three or four-and Steve looked and didn't seem very happy.

That was on Thursday, and Steve took a syringe and inflated the expander (well, yes, he did ask me first, and I said, hell, yes, I'm so freaked out about all this, did I do something wrong?). He stuck a needle into the port and I said I wish he had been the one to shove the needle into the port on my chest that morning, because he didn't hurt me at all. Everything inflated-and I actually had cleavage (or, something resembling cleavage). I also talked all the way through the consultation-it was either talk or burst into tears, so I chose to talk instead.

I go on Thursday to have him examine me again-and the expander is already beginning to sag in the middle. We will need to decide whether to remove it and insert another expander or just insert a permanent implant. My view: a permanent implant. Less trouble. Save my voice, too.

Today I will see Dr. Dimples for the last time. It's sad, I guess, because I have been his patient since just after the gentamicin debacle. But there is nothing more he or his colleagues can do for me. It is up to me, now-up to me with the able assistance of the experienced people at Queen Square.

Remember when I first said (somewhere around a hundred posts ago) that you should always talk to the organ grinder and not the monkey? Not that Dimples is a monkey-but he is the one who sent me to the experts, and Dr. Davies and my two vestibular physiotherapists said that I have more improvements to come, but I must continue to work hard, and work hard daily, no goofing off. Even when I get as far as I can go, I need to work every day, because if I don't, the brain just stops working for me.

I've come a long way-sure, I've got a long way ahead of me, but now I'm looking at it as a major challenge, and I've been able to detach from the anger I felt against the injustice and the four cripplers. It must really suck to be them.

I can report that I am at an internet cafe, waiting for my final appointment with Dimples before he discharges me from his clinic (one more down, I'm halfway out the door of the crappy old Royal London). I walked furtively up the road, just in case I smelled sewage and ran straight into the wife beating, child abusing, dog kicking pile of faecal matter called Bucky Buckland. One never knows what abuse I would get if I ran into him-preferably when I'm in a fast moving vehicle, of course.

I'm really, really lucky that the pile of shite discharged me before the surgery-my ego aside, I was able to quickly move over to the Royal Free, and all treatment (except gastro, which I elected to keep at the London) is now under one roof. It's so much better-and I am so much happier.

Being treated like a human being by people who have so much more experience, expertise, capability, and kindness-it makes an incredible difference. I'm not worried about someone killing me off now. Although, there is always Murphy's Law....