Saturday, 2 February 2013

A bit like Humpty Dumpty

Why buy a dog if you have to do the barking yourself??

Wednesday was my day to go to the storage unit-to get everything out, bleach the floor (allegedly), and put everything back-with some semblance of order. That didn't work out the way I expected.

I got there at 8am, and the storage people were getting their man and his helper to clear the big unit, in addition to the two smaller units (used to clear parts of the big unit so we could get into it to see the mouse damage). Well!! The old guy who showed up was called David; his helper, the muscles, was Norman. They turned out to be more interested in the contents of the boxes than in moving and shifting stuff-and David decided that he had another job at 1pm, so he left Norman to finish up. It turned out to be Norman-and me. And we finished at 4:30, no breaks, nothing to eat or drink...it was purgatory! I got so dizzy at about 2pm that I nearly keeled over in the corridor. Poor Norman thought I was about to expire. BUT-it all got done, although not very well, and there is a lot of damage-not only from mice, but also from David and Norman!!
I got home at about 6:45, feeling like Humpty Dumpty, and wishing that there was somebody who could put me back together again. It took me until today to recover from this very interesting day trip to Hell.

I'm just about finished with all the hospital visits; I have a few in March, and that is about it-until the big knee surgery, and I'm not sure when that will take place. I'm not rushing anything!! I have nearly all of February to myself-first time in two and a half years that I actually have time off. I wonder if I'll be bored!!

NJ emailed me, saying that she thinks she is bipolar, since she has periods of feeling very happy and filled with energy, and other moments of feeling like she doesn't want to go anywhere or see anyone. I think she isn't bipolar (now the trendy term for manic depression), but just moody. That got me thinking-about life, and expectations, and disappointments. We both thought our lives would turn out differently-and we were both wrong.

NJ learned all the right things: how to cook, how to sew, all the homemaking stuff girls learn when they think they will marry and have children, and have dinner parties, and all that good stuff. She always wanted a home. Now-I can cook, but I will never win Master Chef! And, as for sewing...well, what I get when I attempt to sew is a lot of swearing and a substantial amount of blood loss. Sewing? That is why there are tailors!! And cooking?? Hey-God bless whoever invented takeaways.

I can honestly say-at this point in my life-that I have learned to be independent and self-sufficient, in spite of the events of the last two and a half years. A good man would be nice to have around-but there is no substitute for a really good microwave!!!!!!




Tuesday, 29 January 2013

And another thing!

I fully expect the fertilizer to hit the fan very soon-when the GMC contacts the doctors involved in the botched case. So...I'm prepared. I'm looking at different hospitals, I've talked with my GP (who has been fantastic), and I've got a long scarf and dark glasses-just in case!!

Now all I need is a mask...

Small victories...small, but huge in the end

On Saturday I went out to look at the car-and I could see that the tires were on their way to total flatness. Not so good, so I figured I would take a chance and go put air in the tires on Sunday morning. That was the plan, anyway. I haven't really driven in two and a half years-only to move the car from one space to another, and never in traffic, rain, snow, any weather conditions that could be dangerous. I do have my marbles, after all!!

Sunday morning, at 7:15-still dark, but the roads are lit-I decided to take the car up the road a mile and a bit to the Shell station, pay my 50p (imagine having to pay for air and water-what a con!), fill the tires and come back. And-I did it!! It was dark, but I didn't hit anything, or maim or kill anyone-I drove (a little nervously) to the station, filled the tires (did they ever need air!!), and drove back home without any problem whatsoever.

I got back, got inside, and punched the air in triumph. I must admit, I was a bit proud of myself for even daring to drive in the dark. Of course, there weren't many cars on the road yet, so no lights shining in my eyes. It was dry...but even three months ago, I wouldn't ever have taken the risk. So I have some of my confidence back. Now I need to build on that by driving to the supermarket, which is about a mile further down the road than the gas station. Go there, go back, and just keep driving short distances until I feel confident enough to venture a bit further. And I remember my vestibular physiotherapist telling me last summer that I need to get out and drive, although I should be mindful of weather conditions, traffic, and all the things that would make me nervous (including having an accident!!).

I know it's been two and a half years-more, in fact. I know I have had absolutely no patience when it comes to the brain making new pathways so I can get some balance back. But I can look back and see that I am still improving, and that I am still moving forward-although it is very, very slow going.

The fat lady hasn't sung yet-nowhere near it. Keep death on the roads, that's what I say! LOL!!!!!

I got an email from the General Medical Council, telling me that the complaint has been referred to someone who will be investigating it. We shall see if that really happens. I'm not very trusting of doctors; to me, they are one step above personal injury lawyers-who are about a half a step above politicians!! Ah, cynic that I am!!!

Saturday, 26 January 2013

Once again in deep doodoo

I went home on Tuesday and started to do laundry, and cleaning, and all that boring (but necessary) stuff. Then I got "the call". This was from the registrar at the hospital, telling me that my consultant, Matt, wanted me to come in asap. I said-it's 3:30, I just can't drop everything - and I need transport to get there. Anya, her name is: very unpleasant, too. Anyway, things were finally sorted out by my GP-and, sure enough, the hospital transport didn't show up until 9:30pm. Typical NHS brilliance, I say!!!

Now-on Tuesday, I had replied to the General Medical Council's investigators, and I decided to email my chest consultant to ask her to move me out of the combined clinic she shares with-none other than Sofia Grigoriadou, the last person on this earth I want in my life. I pointed out to Lieske (chest consultant) that this woman crippled me for life, that I trusted Lieske but not Sofia, and that the only room I wanted to see Sofia in is a courtroom. I fired off that email, and, of course, actions have consequences. I didn't count on dropping myself into deepest, darkest doodoo with Matthew, my immunologist-but that is exactly what I did. And-in a big way.

On Wednesday morning, one of the registrars came to see me and told me that they wanted to take a chest scan and run tests, and that I would be under observation, but I wouldn't get any meds until they figured out what was wrong-I was glad, because I am already 99% antibiotics, so I didn't want more if I didn't need them. Fine. Then, in the afternoon, Matthew arrived, very angry, in a very pissy mood, and very combative.

He took offence at my email to Lieske (I copied it to him-more fool me!). Well, he laid into me like you wouldn't believe, calling me bullying, saying that I had no right to say things about his colleague-whom he trusted and was part of his team-and so on. He ranted for about 45 minutes, and threatened to discharge me from the service and send me back to my GP so she could find another immunology clinic. He had already called the Royal Free, which is very near where I live, he said-and they won't accept me as a patient. He suggested Addenbrooke's - in Cambridge, 60 miles away. I truly thought he lost it-not very compassionate, and not in the least bit professional. He and his registrar left, and I was in tears. I didn't know what I was going to do. I don't like going to Bart's, but I did (notice I'm using the past tense) trust Matthew as a clinician, and there was nobody else I knew. I would be starting all over again.

Thursday was not a good day. I didn't even get out of bed. I rang my GP, was told she didn't have any phone consultations until Monday-so I booked one, and told the practice manager what had happened. She was as gobsmacked as I was-and Margaret (my GP) rang me at 6pm and I told her the whole story.

I have to say that she was absolutely right. She pointed out that I am very angry and hurt, and for good reason-anyone who had this happen to them would be angry. BUT-actions have consequences. And she said that before I fire off any angry emails, I should stop, walk away, and think carefully about what I have written before I hit the send button. She asked me if I wanted her to email Matthew and say they need to talk; I asked her to wait, because he was due to come on the ward the next day, Friday.

I did try to explain why I felt the way I did-this was yesterday morning-but Matthew wasn't having it. Honestly, I was very disappointed in him; he has the compassion of a cluster bomb. He was cold, impatient, and he told me that he would treat me but that I couldn't send any more emails, and that he would treat whatever chest infection I have, but that would be it. He would not listen to anything having to do with gentamicin, other consultants, anything. And he said I could go home. My scan was good, my bloodwork was good, go home and go back to see my GP. And then he and his four registrars left.

I got home at 4pm...so happy to be there! I have to say, I could have been more diplomatic in my email to Lieske-but I have good reasons for feeling the way I do: betrayed, hard done by, and abused, both as a patient and as a human being. I have no respect for Matthew-he blew that when he had a go at me.

So there you are, the whole sorry tale. I'm glad I didn't hear back from the media. Would I ever be in shit street if anyone published that story!! I would have to move to Belfast just to see an immunologist!!!!

I believe the whole system is grossly unfair. I think that doctors should be made accountable for their actions-and be subjected to public scrutiny, so there is no cover-up and no whitewashing. In this country, there is more of a chance of being hit by a meteor than seeing changes in the law. Sad-but true.

Well- I don't know what I am going to do next- because the General Medical Council should (allegedly) be investigating my complaint, and Matthew will certainly hear about that. Then I am out. I think the best thing I can do now is follow the vestibular physiotherapist's plan: do all the exercises he gave me (bad me, I have been such a slacker!!), do everything that makes me dizzy, and as often as I can, steer clear of stress (ho, really? Easier said than done!!), drink a lot of water, get enough sleep (as if!), and try my best not to be run over by a moving vehicle. And maintain my sense of humor!!

Dr Dimples said that I can get 80% of my balance back if I keep challenging my brain to make new neural pathways-although he did say it would take a long time. So I need to focus on the goal, and leave all the rest of the recent crap behind. I'm giving myself until August to get that 80%-it's a goal, and an achievable one, I think. I also think that I can stay out of hospitals and stay away from Bart's if I start seeing myself as healthy, and focus on the positives, not the negatives.

And I will start looking at other immunology centers, just in case!!! I can't help thinking that, when the General Medical Council contacts Sofia, and Phil, and Hilary, there will be a shitstorm of epic proportions. Heh-THEN I will think about going to the media!!! My motto: never give up.

Tuesday, 22 January 2013

Oh, finally!!

I was snowed in-and I do mean, snowed in!! Saturday was difficult, but Sunday it just kept snowing. And nobody knows how to deal with snow and ice here!! So I hung out at home, did laundry, and complained to myself about not being able to get out to do anything. The roads were sheets of ice, the pavements-well, anyway, I am able to negotiate the ice patches without falling and breaking something. That would be the next exciting thing to happen!!

I received an email from the General Medical Council- they apologized for not answering sooner, but said that they never received the original complaints. They have promised to investigate. I'm telling them everything that happened, and I will be interested to see what (if anything) they do about it. Of course, my name will be worse than sh*t at Barts and the London-but who cares?

I'm seeing flakes (snow flakes!!)-so I will get my little self to the supermarket while I can still walk(ish).

I'm in battle mode!! Always ready for a good fight for rights-usually other people's, but mine this time!!

Saturday, 19 January 2013

Frozen in London

Someone put a comment on the blog-asking if I have been killed by the hospital, since I haven't posted since Wednesday. No-not dead yet-but, of course, there is still time!!!

On Thursday, I took my life in my hands and went to Barts-where I spent eight hours having iron infusions. What a joy-they wonder why I'm anemic-well, of course I am anemic, they keep taking my blood!!! Anyway, I got home late, very tired, and that was my Thursday gone.

Yesterday-it snowed. And I do mean, it snowed. In North London we had about an inch of snow-and the rest of London had about the same-and the entire city was crippled. You would think that, after several winters with snow (at least an inch), someone would think of having enough grit for the roads, and getting out and gritting both roads and pavements...errr...well, no, and we now have sheets of ice on the pavements. That makes it lethal for anyone who is able-bodied, let alone someone (me, in fact) on a walking stick. It must be comical to watch me trying to walk on ice-I have a gait like Charlie Chaplin. Except I fall over.

So, that is the latest from me. Still alive, still trying to walk regardless of snow, ice, fog, bad weather...and still trying to decide on changing hospitals. First: the lawsuit, the media, the fight with Barts Trust. Then I think I will have to find another doctor, because I don't trust anyone at Barts. It's a quandary.

I actually saw something I haven't seen in years: snowball fights. I live on a small side road, and kids were scooping up snow and having snowball fights. It was great: it reminded me of my youth. LOL I was young once, yes!! And we used to lie in the snow and make snow angels. Nobody does that here. How sad.

Wednesday, 16 January 2013

The Iceman Cometh

Actually, it's the winter that cometh. It's freezing out there-and in here, too. Brrrr....this is playing havoc with my balance, and my vision-at least, that is my excuse, and I'm sticking to it.

I had this tap on my shoulder yesterday; I was in the supermarket, and I thought, oh dear, I have no place to hide (in case I have to hide). It was my physiotherapist, and she has been following the blog. At least it was someone friendly. And-she comes from Ireland, so anything I say about the Brits makes her laugh-so I'm safe there (so far).

She said that she is behind me in my crusade-but did I remember the old saying "hoist by one's own petard"? This, by the way, means being blown up by your own bomb, or doing something to someone else that will hurt you more than it will hurt them. I heard this saying years and years ago-It's worth remembering.

I really had to think about this-and very seriously. I considered every avenue before I began this campaign-even the fact that I might be forced to change hospitals and consultants-and, truthfully, I am still in a quandary.

I believe that everyone, regardless of background, or class, or money, or status-everyone-is entitled to decent medical treatment. That is why we have a national health system, even though it is being systematically destroyed by this current government; the NHS works in theory, but in practice it is imploding at warp speed. The Royal London has two shiny new (expensive) buildings, and Barts Hospital is being upgraded-but the nursing staff is being cut so badly that there are fewer nurses who are forced to work double shifts, do twice the work, and they are doing this for the same pay. It's either that, or quit. Some choice!

I'm doing this because the doctors who are responsible for this travesty need to be forced to be publicly accountable-and by publicly, I mean publicly. There is no point in doctors investigating doctors, because there will invariably be a whitewash, a cover-up. That is the way it works-not only here, but everywhere. So there needs to be public scrutiny involved-because I know this has happened to other people, and I don't want this to happen to anyone else-ever. And this could easily have been avoided if the doctors had any level of competence.

I also want gentamicin to be banned in this country-and in every other country. Gent. is 50 years old, and nobody can tell me that, with all the advances in medicine, there aren't other drugs that do the same (or better) -except, of course, they cost more. So the NHS is taking the easy way out: buy the cheapest drug, even if it is highly toxic and causes horrific damage. Ban it. Those who make the decisions can pay themselves a bit less; it's the patients that count.

I want to go elsewhere-but there is only the Royal Free, which happens to be around the corner. But I could be going from the frying pan straight into the fire, so I'm not sure I want to do that.

I do have a feeling that everyone at Barts will be treating me with a great deal of caution (in addition to the obvious hostility to which I have been subjected so far).

If someone wants justice-if someone wants to right a wrong that is very, very wrong indeed-if someone is so fed up with a system that desperately needs a thorough overhaul, and nobody else is doing anything about it-then one must take risks. And-if anything happens to me, we will all know who is responsible!!!!!! Accidental poisoning? Sure. Accidental poisoning, my backside!