I can see answers, well maybe

After years of anguish and pure incompetence there is finally some answers in sight, well maybe.

I have had quite the few months. After the ridiculous situation in June, I have now finished my investigations with my rheumatologist and we a staying as we were, no changes to drugs and I now will have an annual check up to make sure I am not about to fall apart.

I had a couple of scans, and they show that although my long bones are still actively growing, it is not at a rate that suggests anything scary. There was an option to change my medication from daily tablets to an intravenous dose every two years. It would have been nice not to have to take tablets every day but the Doctors decided against it, which I thought was good news. Yes it would be easier but having a drug used in chemo is never a good idea if you can survive without it. I am fairly happy with the as you were stance, to be honest.

Remember when they screwed up, well it turned out I had three separate files at Chelsea and Westminster Hospital, all with different letters and tests in, basically according to their system, they had 3 of me, all with different bits of my condition in different files. A* for organisational skills.

This brings me on to the Dermatology department at C&W, who continue to practice with the same level of ineptitude I have become accustom to. It took over 8 month for them to arrange an appointment with a geneticist, promised in December 2011, and is now scheduled for the end of October.

I had a clinic appointment with the entire department. I spent the majority of this wanting to clip each of them around the ear, well mainly one specific consultant. This “character” wanted to show off. “Oh yes, I remember that presentation at the BMC. It was excellent. Do we have the photos? It must have taken 40 years of him” My first reaction was to take the insult on the chin. He went on to describe my case as fascinating, which really pissed me off.

I now could only focus on this bell-end and his fascination in my case. I was delighted his fascination had lead to him discussing me with his colleague in the department, say over the 10 years since the presentation. Oh no wait, that probably would have lead to the realisation that I was being seen.

Well, Dr Twatimus Maximus, if you were not a doctor and worked in the private sector, I doubt anybody would have been nodding along as you brought up a client you were fascinated by, saw an excellent presentation on by a colleague in your department and the failed to mention for the next decade. If a colleague presented a client to the industry, and then I didn’t hear anything about it for the next decade, I would have asked a question or two, say 9 years ago. I definitely wouldn’t be trying to show during another presentation on the client by a different colleague. PRICK.

I haven’t had an appointment since this because of stringent time keeping and the *excellent* service provided by South Eastern Trains. My appointment was scheduled for 11.45am, I had taken the day of work, so set off for an hour’s journey with 20 minutes to spare. My train then sat at a standstill for 50 minutes, because some berk had decided to use the train tracks as a shortcut.

As I was running late, I rung ahead to tell them so.

A clinic, scratch that, a department that has never run to time could surely accommodate me. I was only running half an hour late. “No, sorry, there will be no point you coming across to the hospital I’m afraid” was the answer. I was less than impressed, but calmly made an appointment later in the month, as soon as possible, which turns out to be be on the same day I see the geneticist. That is going to be a day packed full of fun, there is nothing I like more than waiting rooms.

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What a Shit Week

Well this week has been testing to say the least. The administrative staff at Chelsea and Westminster Hospital have surpassed any previously high level of incompetence to reach the summit of Mount Totally Fucking Shit.

Last Saturday I received a new appointment letter for late July with a new doctor in the Dermatology department. Now this was confusing, I already had an appointment booked for Wednesday.

Due to this confusion I rang Dermatology for clarification on why I had two appointments with two different doctors, one of whom I had never met. I was quickly told it would be because my appointment on Wednesday was cancelled, but Jackie did not know why nor why I had an appointment with a doctor I had never met……….. Oh Joy. I was informed that Jackie would be looking into this and would be in contact the next day, which in the Gregorian calendar was a Tuesday.

By complete coincidence I had an appointment with the Chelsea and Westminster Rheumatology department, albeit off campus in Westminster. I arrived at my appointment promptly and sat waiting, 45 minutes passed before the receptionist came to me. She asked if me if I knew who had referred me, as my GP had no record and she did not have a referral letter. I told her that it would have come from a Dr in the Dermatology department and gave her a very abridged version of my tale as a explanation.

The receptionist spent the next 15 minutes trying to find out from the Dermatology department what was going on and where my letter was. So that was that I could not have my appointment.

I was seething and told the receptionist not to worry I would go there myself to sort it out.

I spent the 15 minutes walk to Victoria fighting back tears as I spoke to Dad on the phone to try and compose myself, by the time my tube came I was calm, collected and ready to assassinate any member of the dermatology administrative team who blocked me.

I got to the hospital tout suite, well that isn’t entirely true I popped to Starbucks (other coffee shops are available, probably with better coffee), I had a feeling I could be waiting around and knew beverages were going to be required.

I got to the department, still waiting for a member of the admin team to call me back following my conversation on Monday, and asked to collect a referral letter and speak to the head of the admin team for Dermatology. The gormless dingbat, who I have had the arduous task of dealing with far too much for my liking, took a few minutes but seem to have understood the sentences he had heard and promptly picked up the phone. Nope, scratch that he didn’t understand at all. I had to explain my problem to another member of staff who could manage a conversation and interact with more that one human at a time.

I took a seat to wait to see who I would be presented with to discuss my case and the failings of the dermatology department. I was greeted by Steve the head of admin for the Rheumatology department, hang on I hear you say but that is not who you asked to see, I KNOW. Apparently Jackie the head of admin for Dermatology was unavailable, and she wasn’t unavailable because she was returning my call either. I’m still waiting for that one.

For his worth, Steve was very understand and in truth shocked at the treatment I have received within the Dermatology department, but as I said to him at the start of the conversation, it really wasn’t his fault or area, my first dealings with his department was this morning. But he pressed the phone monkey on reception to find out by who and why my Wednesday appointment was cancelled and moved, which he did actually manage to do in little over 10 minutes, a miraculous event that still astounds me.

Steve has also followed this up yesterday, chasing the relevant people to get me a new Rheumatology appointment and answers from the Dermatology team, and has promised to report daily to me until there is at least an immediate resolution, and so far he has. So pat on the back Steve you are a good lad, Jackie you can burn in a pot of boiling piss.

A swift kick up the arse seems to work

*Appointment Alert, Appointment Alert*

After my previous appointment I was asked to be seen within the next six weeks (see I’m a Mutant), well six weeks later I thought I’d ring the hospital to see if they just weren’t going to tell me, or actually hadn’t booked an appointment. The answer was the later, oh the joy of NHS admin strikes again.

“I’m terribly sorry Sir, but Dr Singh didn’t have any space in her clinic six week after your appointment.”

“Did you think to put me in the next available clinic slot?”

“I can do that for you now Mr Bayliss”

“Ok, how long will this be?”

“6 WEEKS”

“Oh delightful, is six weeks just the go to amount of time for everything?”

“I don’t understand your point Mr Bayliss”

So I arrived at my appointment all hopeful of progress, at my last appointment I was told I would be referred to a geneticist specialising in dermatology to find out why I’m a mutant. I should have be having blood tests, to work out whether it was an exposure to a toxin like the turtles, a bite from a spider, or the fact I am actually called Kal-El and came here from Krypton, that has made me super special.

Alas it appears my doctor couldn’t be bother to do anything between appointments, even thought she had twice as long as she expected. SUPER. Sorry, to say she had done absolutely nothing is a bit harsh; she had text someone and was waiting for a response during my appointment, so you text them before I came in, Great.

Well to say I was unimpressed is a bit of an understatement, so I persuaded her that it was probably better to get on with this as I happily let every medic from here to timbucfuckingtoo prod, grope and harass me. I allow all my medical notes to be the Imperial University Medical Library, I must have had about 5 hours in the photo department over the years, don’t get me wrong I was in the waiting room for most of it. I am all for letting the doctors learn from me, but how about they do studies and experiments, rather than make me come for a chat about how they have done fuck all since I last saw them.

I tackled the conversation as politely as I could, on the inside I wanted to go apocalyptic on her ass, but I was very, “I think we should progress this with a bit more gusto” rather than “Oi MoFo you best get actioning some shizzy before I break my foot off in yo’ ass”.

My message was understood and the ball started rolling, suddenly I was being referred to the rheumatology department, I was booked into a “meeting of the minds” dermatology clinic within the month and was trotting off for a full body bone scan.

Just think if I had addressed this 5 years ago I could have had a book written about me.

Bad Friend

One of the biggest worries I have had since starting this blog was letting my friends read it, there are things that I have written and will write that they know nothing about and in all honestly I am fairly scared about their reactions if and when they read them.

I have an amazing group of friends and I would jump in front of car for any of them, well most of them, some of them might need some a bit of knocked into them. The way I see it, it is not a reflection of them or our friendship that they don’t know things about me that I have hidden from everybody apart from the other people who live in my head. (Just in case you wondered I only have one voice in my head.)

But, this whole experience has made me very insular, I am an extremely social person and love to “work a room” but beyond being friendly I keep my cards very close to my chest as to what is really happening in my head. I prensent a bravado that really isn’t me, I imagine it is a protection mechanism, for me and for my friends; I don’t want them to associate me with anything to do with my illness. I just want them to be friends with ‘me’, the one that a lot of them knew before my illness, but I guess I am starting to learn that this is a part of me and for them to know who I am it is important that I don’t bricked them out of a part of my life.

I would definitely say I have lived behind a facade for probably the full 10 or so years, which is pretty scary to realise. I have been to and still go to pretty dark places in my head. My dark place and I get on pretty well these days, I try to give it a few hours at a time convenient to me every week, and as a result I rarely get dragged into a slump as frequently as I use to. I have always been able to paint a rose picture for observers but I have never taken time to stop and think if people are recognising my strange depressive behaviour and let me get on with it or just let me get on with it.

My head has been fully loopy ever since my diagnosis but it got worse when I realised that I was going loopy and not talking to anyone. You become more insular as you come to terms with just how cuckoo you have become, well I did anyway.

Oh and yeah and …………… I have heard the one about the dark space in your head being because something is missing.

 

Operations, more operations

After my second operation I was given time to heal, I had a year away from the table to allow hooks and clips to dissolve and to let my face reattached to my skull, before it got ripped off again.

So …..March 2007 was the date of my 3rd operation and this time it would be both the previous operations in one go, it surprisingly only took 8 hrs and again I was home within 48 hours of having my face sewn, glued and stapled back together, no mean feat. This time I was sent home with drains in again, these are particularly horrible contraptions, a tube comes from the bottom of the incision out to a deflated pump balloon which fills up with blood and fluid until the wound has healed. I was making frequent trips back to the dressings nurse again but this was  due to the number of incisions and not an infection so I wasn’t that bothered. The stitches around my ears were the first to come out and then after another two and a half weeks out came the staples. Now this is when you think I am a real freak. Having staples removed is one of the strangest pleasure/pain sensation I have ever experienced. The area is still reasonably numb, and some of the stables are scabbed over and can be hard to remove but all in all the sensation as the staple is pull from your wound is kinda nice. There I said it, don’t look at me differently now.

After this operation I again put everything on hold to let my face recover and thought I should probably finish my degree without any interruptions, so any more operations could wait.

Time to get in the DeLorean, we are heading to 2009. (if you don’t understand this reference, please stop reading – only joking, but seriously Marty McFly is the bees knees)

I have finished University and decided this would be a good time to have my next operation ahead of joining the voyage on a ship by the name “Career”. I saw my Surgeon in August, I was on the list, but he was busy at the time and would get me in as soon as possible. I was given a date in September for a pre-operative assessment, which went wonderfully. Then the wait, a long wait.

Throughout December and January I was trying to contact the NHS to find out if I had a date for my surgery yet. I didn’t hear back and by the time February had arrived I was more than concerned that I was putting my life on hold for something that was not even scheduled. By March, I resorted to making a private appointment with my surgeon to discuss if that route would speed things up. Low and behold my surgery was actually scheduled with the NHS 6 days after my private appointment, I just wasn’t told. To rub salt in the wound, I was meant to be on holiday.

My surgeon kindly said that I should go on holiday and he would sort it all out for me to have the surgery in April. He was an absolute superstar creating space for me after the administration of Chelsea and Westminster had royally fudged up. My surgeon has always tried to make my surgeries as convenient as possible for me, for my first 3 operations we got our diaries out and scheduled them around my university holiday and his kids’ school holidays.

So April came and it was time for my 4th operation. This time I was having the scars around my ears removed and a bit of a tweak around my eyes. The surgery was a lighteningly quick 4 hours and after another breezy 48 hours on the ward I was being driven across London to nestle on a sofa for a few weeks.

As with previous surgeries I had to sleep upright again with my 3rd and 4th. This is one of the hardest parts of the whole experience, you don’t feel as though you are recovering properly when you can’t have a bit of quality shut eye. My recover took about 4 weeks this time with the stitches coming out after 2. I think my head is getting used to inflating to the size of Hey Arnold’s.

Well that is all of my surgeries covered now, but fear not, I am awaiting a date for my next and we have all the joys of the investigations and more presentations.

The investigation goes…. well nowhere

After the inspiring update from last week, let’s get back to the history and try and get up to date before my next appointment.

After having the first two surgeries, my face was given a year off, to settle. This was when things started to go less than brilliantly service wise with Chelsea and Westminster hospital. I was referred to the dermatology department for them to carry out some studies into the disease. This was excellent news; one of the best things about being a special case is that you normally get the attention of the doctors as they like to play with weird stuff, that’s me. Apparently not so in 2006/2007 at Chelsea and Westminster.

I saw a professor of dermatology who specialised in connective tissue disorders; he was going to conduct research in to everything about me. This sort of happened, but I was never given the interim findings and there were no further studies beyond those findings. I had a medical history done and a skin biopsy, then nothing.  My case and I were shown at the Royal Society of Medicine which was a strange event, I sat topless in a cubical as about two to three hundred doctors walked past me staring, some even did me the courtesy of pointing or poking me, this was a pretty horrible experience, but not the worst of this time.

During my skin biopsy I was asked if the students could look at my case photos. To start with I have students in lots of my appointments, Chelsea and Westminster is Imperial College’s teaching hospital and I’m all for helping the kids learns. I’m also vain so think they were going to see a set of portrait shots I have posed for in the photography studio at the hospital which would give them a good look of my cool hairstyles over past two years. Now if you have a choice between looking at photos of yourself or someone cut into your hand down to the bone, on most occasions you who be watching the slideshow, after about 6 photos I saw a bloody mess. Ahhh they were showing photos of me with face cut off, if you have seen face-off, it is accurate. Now I had never had a problem with gore but my own gore that is disturbing and since that day I have been unbelievably squeamish, I hide my eyes during Holby City. My skin biopsy results were pretty normal to the disappointment of the doctors and this is when the department’s interest in me tailed off, the interim findings suggest I had six more investigation to find out more about the condition, I had none of these, in fact I had no further appointments with the dermatology department until December 2011, when I took the initiative to approach the department again and tell them to sort their act out. Now I can’t fault the new team looking after me, they seem to be good geeky doctors who find me extremely interesting. So project me continues.

 

I’m a Mutant

This one is coming out of sync, but I’ve had some pretty fandabbydosey news. I had an appointment with my dermatologist on Monday and was told not only has she found me a dermatological disease specialist to take over my case and give me the attention I deserve, but medical research has located the mutant gene that causes my disease. I don’t think I have ever been happier to find out that I’m a mutant; you can officially call me the x-man from now on, or the hero turtle. But to be serious again this is amazing news, I don’t actually know how this news will initially affect me, it will probably mean more tests. The good news is that when I decide to have kids they won’t have it, gene selection already happens, so whoop whoop I am a very happy bunny.