Steam pops up, as it does, with all of the pretty shiny things it’s advertising.

Not that I wanted any of them, but it made me think of games I might want and how as time passes I won’t be able to afford stuff like that any more, nor upgrades/repairs for my PC when they are needed.

I’m a gamer, I’ve always been a gamer and over the next year or so, I can only see that part of my life being eaten away, leaving a very large hole.

3 months and counting.

The form for my PIP application landed yesterday. I’ve flicked through it, but I can’t face it at this moment. The world is being all kinds of dark and miserable right now – so dealing with my shit is difficult. Hopefully soon, any of the friends who I am supposed to be doing stuff with today will show up and I can get on with that stuff, which will help distract me.

From time to time, I am asked, in my capacity as a chronically ill person, how things are going.

With this in mind I though I would write a brief[0] update as to the state of my health. This is in part to answer the basic question, but also to elucidate more thoroughly on the general “good days, bad days” or similar answer that I give when there isn’t the time to give a full explanation without turning the conversation into “Me me me me me me!” [1]

So there are two basic things wrong:Firstly I suffer from sarcoidosisSecondly and apparently unrelatedly, chronic pain.

So, chronic fatigue. This is probably caused by my sarcoidosis, a wierd disease which seems to have whole body effects, even though it seems to pick on particular organs for physical symptoms. Being in regular extreme pain and on strong meds doesn’t help either. I am always tired, a constant state of exhaustion which is never ending and ever present. I suffer from insomnia which keeps me awake and I then my body will go into shutdown for 12-20 hour stints. Even when I don’t have to attend work, no amount of sleep is ever EVER enough. I have basically no energy for any activities other than those which occur in a chair. You would be amazed at how old playing computer games can become, even for me.[2] Getting out of the house for anything outside the absolutely necessary is really hard work. I’ve not seen my sister in forever, because the thought of travelling the 200 odd miles fills me with fear. Speaking of which…

I suffer from anxiety. This is again, very probably caused by my sarcoidosis. This means that I am prone to worry over things which don’t deserve the attention. If I have little or nothing to worry about, my brain will invent things which have no basis in fact or logic.

Though on a logical level I know this is happening, I am unable to control it and my mind churns around and around imagining the worst possible outcomes to all possibilities. I am receiving medication for this which helps somewhat, but there are times when it can be paralysing and all consuming. As you might imagine, laying in bed with my brain running through conversations which will never happen, in which whoever I am speaking to (friends, colleagues, total strangers) is being wholly and completely at odds with my and utterly unreasonable contributes greatly to keeping me awake at night. This does not help with my fatigue problems.

My anxiety is what tells me that none of you would understand my problems and how you all think I am a terrible person. It tells me that no matter how I would try to explain or justify myself, it would all fall upon deaf ears. I know you all talk about me behind my back in condescending tones. When I do try to open up, I will be confronted with continuous negativity.[3]

I rather feel I could cope a lot better with everything, if I didn’t have the anxiety telling me everything will not (in fact never ever) be all right, everything will always be the worst it could be and if I were to try and make anything better I would not only spectacularly fail, but make things a whole lot worse. It’s interesting that I’ve written more about anxiety than any of my other (arguably just as bad) problems, but you see – my anxiety says I have to justify it at length or it will, quite understandably, be completely dismissed.

I am always in pain. Despite every scan known to the radiographer’s department (I asked them and they said I’d had them all) no root or at least treatable cause for my pain has been located. I’ve had physio, including accupuncture and have been seen by the local specialist pain consultant. The only solution which is in any way effective is opiate based drug therapies. I am presently taking tramadol, about twice as strong as codeine[4]. Needless to say, having been on this for so long I am now dependant[5][6] upon it, both as pain relief and also I suffer from withdrawal if I skip my regular dose. Naturally I also go through paracetomol and ibuprofen like smarties.

Taking such strong drugs, along with ones for blood pressure, anti-anxiety and other relaxation or sleeping pills as necessary to combat the insomnia contributes both to my general state of unwellbeing and tends to make me a bit muddle headed. I can assure you that whilst a few opiate painkillers from time to time might be amusingly recreational[7], being on them long term is horrible and one just wants to come down and be able to think straight. Naturally they don’t mix well with booze at all, so I rarely drink these days[8].

It had seemed for a while at the beginning of the year that things had started to improve somewhat. I was less in pain and generally feeling better, healthier. Since August, I’ve crashed spectacularly. I am more tired than ever, I experience nausea for at least some of every day. My pain has ramped up. Basically I now constantly feel ill, on a really good day, I’ll just feel a bit under the weather. On a really bad day means walking up the stairs makes me feel faint and I’ll probably be vomiting at some point.

I am therefore looking forward with great anticipation to my next round of visits to the hospitals and so on.[9] I’m due to see my sarcoidosis doctor in January. I should have seen him last month, but there was some issue with excessive quantities of patients and so I’ve had to wait. Last time I saw him, my lung functions were down and there was talk of asthma, or progression of my sarcoid or other things.

Meantime I have been trying to get back to see my pain doctor. My GP wrote to his clinic[11] and they wrote back saying they deal with pain, not sarcoidosis. Obviously they lost the letter in which the consultant said he’d be pleased to see me again, also didn’t bother to read the part of the GP referral which said chronic pain. Not happy. I really need a different pain management solution. Tramadol is NOT helping with the other aspects of my health. Not at all.

The net result of my current situation is that I am now forced to take a big step back. I’ve resigned as a director of Alpha Omega Computers and am working part time. With arrangements I’ve made with my colleagues, I’ve got about 10 months of full on financial security, by which time I need to have got something in place to enable me to carry on with life. Either to be well enough to return to full time work, or some other method to support myself on a long term basis.

Naturally I am pretty well unable to ever ask for help, except when in the direst of duress, or when it’s for something trivial. Asking for help will inevitable lead to disappointment as there will be lots of good reasons for not helping me. This applies to my friends (even when I know they love me). It also applies to dealing with banks, benefits and whatever else may confront me on a day to day basis. Because I know I will get the worst possible reaction, it is easier just not to ask.[12]

If you read through all this misery, then well done you and thankyou. You can click ‘like’ if you want, without explaining how it really means ‘not like’. I’ll understand.

Sorry this missive has failed on the amusing gags front. I’m just not in the mood.

tl;dr – Life sucks pretty badly atm.

[0] Even now, having written less than two sentences, I know that in all honesty it will be anything but brief.
[1] I tend to presume that people really don’t want me to bang on for the next 15 minutes about shit and will make a point of asking me for more detail if they want it.
[2] Yes, even for me. I know I am the poster child for overindulgence in video games, but even so.
[3] …I could go on. Whilst I know it’s not true, the anxiety monster isn’t interested in reality.
[4] I’ve written about my codeine fun elsewhere.
[5] My pain consultant reassures me this isn’t the same as addicted, though I think he’s splitting a hair mighty thin.
[6] At least Tramadol doesn’t affect my personality like codeine did. Well.. not as much, I hope.
[7] If you like that sort of thing.
[8] So if you were thinking of buying me a bottle of grog for Xmas, perhaps best to reconsider.[10]
[9] No I’m not.
[10] Unless it’s really expensive grog designed for occasional indulgent sipping… Just saying 😉
[11] I’m not blaming Dr Pike cos his bureaucracy sucks.
[12] Hahah… you will fail and die miserable and alone, just like you deserve.. Big Love, The Anxiety.

I realise it’s been a fair old while since I delivered any news or updates concerning the ongoing saga of shoulders, sarcoids and other general tales from a hospital ward and being as there has been some amount of cage rattling relating to a posting I made some months ago, it has given me a moment of inspiration to put pen to paper, or more precisely fingers to keyboard and tippety tappety some of the things which have been happening recently.

I recall that in my last missive I had just commenced a course of physiotherapy with a chap named Neil. I feel a little disappointed by this, as he is in no way the most attractive of the available physiotherapists. Indeed, when he was away one week, I had the pleasure of meeting Jacinta, an attractive blonde with a talent for massage. This intimate relationship was doomed only to last for about 20 minutes[1] and it’s been Neil ever since.

At first he had a plan to try and manipulate the vertebrae[2] and loosen stuff up, as though it were some kind of stiff neck issue. This caused a slow downslide into even more pain as my system violently rejected this approach as a particularly bad idea. In addition, the silly exercises were both hard to get done right and also seemed to be doing me more harm than good. Again therefore, that idea was ditched in favour of some easier exercises and some of what is described as “soft tissue work” but realistically means a short snooze on the physio bed whilst getting a bit of a back rub.

Of course such luxuries as a lunchtime snooze in the hospital once a week could not continue without some form of punishment and this came in the form of the suggestion of accupuncture. This apparently to desensitize the area. I would have preferred a solution which fixed the problem in the area, but I’ll settle for this in the meantime.

On an unrelated note, I feel that winter has finally arrived.

I awoke this morning[3] to find the whole area had turned white with a deep frost.

Well, that’s not strictly true. I awoke, dragged myself in the usual state of despair which accompanies having to get up after anything less than 12 hours of sleep (sarcoidosis is a bitch), vaguely got my shit together and then left thehouse to find the aforementioned weather situation. I am pleased to report thatthe heated front windscreen of my mondeo made short work of the nastiness andthat I was on my way in no time.

It’s quite odd living (literally) on the edge of town. I use a little backroad (with passing places!) as a shortcut to the main road towards Batley,which takes me through some farmland used for a variety of equines, mostly ponies. They were all standing about in their white, frost covered fields, and generally looking like they would much rather by in my nice warm car. The fun and cavorting of the summer months[4] long since gone and now replaced by a general horsey malaise of “by ‘eck lad, it’s a bit nippy this morning.”. Equines it seems, much like humans, have an intense capacity to indicate their hated of freezing cold, damp misery.

To return to the main point, I think the accupuncture has done me some good. Certainly it does seem like the pain isn’t quite so bad and I’m a bit less stiff. I have now been given exercises that involve stretching a large rubber strap around my head and doing neck strengthening stuff. This improvement has also led to my pain consultant discharging me for the time being, so all in all the horrible shoulder thing is, mostly, under control. I’m still taking plenty of painkillers and so on, but they work most of the time and though it’s still a lot of meds, it’s a lot less meds than it was six months ago!

I have also recently visited my sarcoidosis consultant, Dr Paul Beirne. Or well, actually I haven’t.

First of all they did a full set of lung function tests. This involved sitting in a strange box whilst some kind of highly trained nurse/technician type had me perform a variety of breathing[5] exercises in a sealed box full of tubes. This gave a set of results which, for once, were completely incomprehensible to me and might just as well have been written in Farsi. I didn’t like that as I normally have at least some idea about whatever it is the doctors are talking about, but lung function tests appear to yield a set of meaningless numbers without useful context to judge anything.

After this and a quick pit stop at X-Ray so they could photograph my chest. They were quite adamant I was standing wrong. How can I stand wrong? I’ve got my chest up to the plate and am standing in the “standard position” that I’ve been put in by a hundred radiographers for a hundred CXR[6] before, but oh no – today it’s not right and they want me to stand in the position most designed to make my shoulder hurt. I am pleased to report that after some growly ouchy noises, I got to stand as I felt was correct, which also is a not hurty position.

Then I had the pleasure of sitting in a waiting room for what seemed like forever, before finally not getting to see Dr Paul, but instead a registrar. She may well have been qualified in medicine, but certainly was not qualified in basic spoken English. Sadly a complete waste of time. The letter that arrived some time afterward (copy of what went to my GP) was quite obviously a failure to understand any of my concerns and somehow had reached the conclusion that I am a smoker[8] and had got the particular symptoms concerning me completely wrong. I think I shall have to write back to the clinic and set it all straight. I’ve already visited my GP to correct any misgivings he may have.

What I can say about the visit is that the CXR was unchanged, my sarcoid is therefore no better and no worse. Ho hum.

Situation normal then.

[1] Now I come to think about it, I’m fairly sure that other kinds of intimate relationships can be purchased in 20 minute blocks, so I’m not sure what that says about physiotherapy departments.
[2] I saw a thing on the web recently about how people now use google to check spelling instead of a dictionary. Guilty.
[3] You understand the morning in question not necessarily the same morning of publishing this article, but some other morning when I was writing this stuff.
[4] Yes, Alicia – It can be quite pleasant to observe, especially when the baby ones[7] are playing.
[5] Deep, Heavy and Panting. Probably recorded for use on the foley stage of “those” kinds of films.
[6] That’s Doctor shorthand for chest x-ray, and appears on all the letters they send around.
[7] The proprieter of the local chippy thinks they get sold to make dog food, but I am reliably informed that this is not the case.
[8] I’m a former smoker, been off the evil nic for years now.

This lunchtime, I once again attended the ghost hospital[1]. Dr Pike (whose name I can’t take seriously, because it makes me think of the mad arm waving antics of the scientist and TV presenter Magnus Pyke) had referred me to see the physiotherapists and so it was those guys I was visiting today.

First of all I had to get there. This should have been a simple process, having already attended DDH twice without issue, however the physio department is hidden. A map at the carpark describes the campus, but is oriented, drawn and coloured in such a manner that the normal function of a map, to indicate the layout of a place in a useful manner, is almost entirely destroyed  such that a chap like myself, who can navigate by means of grid references with a 1:50000 Landranger from Ordnance Survey, became quickly lost.

Normally, being lost in an environment such as a hospital would not be a major issue. They are places with many signs, pointing out useful places like X-Ray and the morgue. This is the ghost hospital, however and has signs to Human Resources and the Oakfield Building and no signs to places like Physiotherapy, or the Old Staincliffe Building (in which physiotherapy is located). Added to this, it’s the ghost hospital, so finding someone who one can ask for directions is a challenge. I did, finally, find a live person (I presume live, was out in daylight and not demanding brains) who was able to give me directions. Naturally I was on the complete opposite side of the hospital from where I wanted to be. Grumbling somewhat I headed to the other side.

Arriving at the other side of the hospital, I found another map. This time, it didn’t even have a “you are here” arrow and had faded so the whole thing was in a sort of uniform “off blue” colour. This made it slightly less useful than the previous map, so I didn’t even bother to try interpreting it and instead caught a glimpse of a member of staff scurrying from one building to another, clearly trying not to be seen. I pounced and after a short scuffle had him pinned down[2]. This man was able to inform me that the large building (unlabelled) was the Old Staincliffe building and that Physio was through the door and up the stairs, or maybe down the stairs, in fact there were two physiotherapies and it depended which one I needed.

Finally, after entering the hospital, walking down a corridor (which split into two lanes at one point to accomodate an elevator) and generally becoming more worried I was lost again, I saw a sign pointing upstairs to physio. I had left Batley at 1230, spent 10 minutes driving and finally arrived at the physiotherapy reception at 1259, for my 1300 appointment.

Naturally, despite a room full of desks and computers, it being the ghost hospital, there was only one person present. A lady of a certain age, with a dark and obvious moustache. She asked who I was and I told her, so she consulted her computer. Looking confused she asked for my address, had I any paperwork and so on. Finally she asked me to write down my full name and date of birth, I guess she was hard of hearing for dates and spellings, so I was happy to oblige. She then found me straight away in the system and asked me to take a seat.

This was an interesting part of the hospital, as it appeared to be one of the few places with staff and/or patients. Most of whom where on crutches[3]. In fact, I felt almost healthy as I sat, vaguely entertained by a gentleman with his leg in plaster arguing the toss with the moustache woman about his appointment. I gathered he had missed it and alleged he had “phoned in” and “been told he could come in later”. I also gathered from the tone of his voice that he was a lying toad who hadn’t got out of bed on time. It was shortly after he was sent away with a new appointment that I was summoned by Neil the Physio for my assessment/treatment.

I won’t bother describing all the things that transpired, except to say it involved much prodding poking and stretching in the neck/shoulder area, as you might imagine – that being the area of the pain. After some amount of this, Neil was able to conclude that there was a marked difference in my movement from one side, as compared to the other. He also found differences in the feel of  it and even astonishingly enough managed to find particular movements which specifically caused me more pain[4]. Finally he announced that he believes it is actually a mechanical problem, which he believes he can treat. To that end, he has given me some neck exercises, or rather as he said, “movements really” which will help free up the stuck bits in my lower neck and hopefully start to relieve the pain.

Basically, he is of the opinion that the whole business with my lymphadenopathy[5] and associated worrying about lymphoma and then sarcoidosis has clouded and pushed into the background the initial problem, which was and remains a sore shoulder and I should have seen a physio months ago.

Of course I’ve heard this before, ah yes Mr Morrell, your problem is this and here is what we intend to do[6], but I am actually pretty convinced by this. If nothing else, I guess I have some locked up bits of neck which need a good old loosening. In addition there are some posture issues which need looking at. To that end I have jacked up my monitors on stands[7] to help keep my head looking up.

So far, noone in the office seems to have noticed me doing my silly “movements” which are to be done on an hourly basis. I expect some amount of piss taking when they do. Bless them.

[1] – Dewsbury and District Hospital, see my previous posts for details!
[2] – Well. Shouted “excuse me!” quite loudly, but anyway.
[3] – The patients, not the staff, obviously.
[4] – To state the obvious, this might seem bad, but is incredibly useful for diagnosing the problem.
[5] – Enlarged Lymph nodes. One of these days I’ll have to create some kind of glossary.
[6] – Accompanied usually by poo pooing what other physicians have stated.
[7] – By stands, I mean “things in the office which were tall enough and sturdy enough for monitors to sit on but aren’t actually stands for anything”.

Yes, this is long. Feel free to read it in small easy installments if that helps. Or ignore it. TL;DR is fine.

This missive goes out to the die hard fans, the few loyal followers who can wait six months for an update, the hardy, the resolute. Since being told it’s not cancer and I’m apparently in no immediate danger of death, writing pages of shit every time I enter any of the various medical institutions in West Yorkshire, variously decked out in horrible shades of green, blue or a sort of beigy magnolia seems, frankly, to be a right pain in the arse.

Or to put it another way. I simply couldn’t be bothered.

I’ll put this down, naturally, to my chronic fatigue which seems to get worse and worse as time goes on, to the extent that doing almost anything these days, is a massive effort requiring willpower and psyching up.

Still, I digress from the point of this epistle, which is to round up the last few months in the story of can, or can we not, do anything about Stef’s health problems. The dates are frankly unimportant (ok – I can’t remember them) but events are presented in (roughly speaking) chronological order.

You may remember from last time, that I had just had some surgery which had yielded a result of sarcoidosis. Obviously this is excellent, take two leeches and allow them to dissolve slowly under the tongue, job sorted.

If only.

Instead, Adrian the haematologist discharges me (well, except to see me every year to make sure I’m not getting some other type of horrible cancer) and refers me to a Doctor Suralaya, the local chest consultant. Oddly enough, it says nothing about him knowing anything about sarcoid, which is, as I’m sure you all know by now, a whole body sort of thing, being able to attack any organs and causing all kinds of symptoms.

For me, it’s a bad case of fatigue[0] and a decent amount of free floating anxiety. Oh… and there’s this pain in my shoulder. remember that?

So, I get my appointment to see the chest doc. It’s some weeks away, seeing as I’m not dying, I’m back onto the standard waiting lists and now everything is on the slow track. This sucks. I therefore engage in a bit of self help in the meantime and join an online sarcoidosis support group. As I read the forums I learn that my symptoms are actually pretty mild, certainly in comparison to some of them and they are all saying all the time “Go to London, Dick WhittingStef, where the streets are paved with Sarcoid Specialists”. I’m sure you will all agree that taking a trip to London is a particularly extreme measure to take and one to be avoided at all costs. Fortunately another name pops up, Paul Beirne. It seems that he is interested in Sarcoid and has even done some research medicine into this affliction. Furthermore, he operates a clinic at Leeds General. I head to my GP and demand a referral.

In the meantime, copying with life has become largely impossible. House of Death is a nightmare. Detritus of years of occupancy by various souls, coupled with age and lack of maintenance long since made it beyond my ability to deal with. This on two levels, the first being my endless fatigue simply making getting any of the work done far too big a mountain to climb and secondly my anxiety causing me to retreat into the horror of everything that could and would possibly go wrong even if I did try to sort my shit out. If you’ve never suffered from anxiety, don’t imagine it’s being a bit nervous about normal valid worries. Proper anxiety is where you not only worry to excess about normal things, but your mind invents things to worry about and then paints everything in the blackest, starkest, most terrible terms possible. In my case, heading rapidly towards rock bottom, my mind was telling me I couldn’t possibly ask for any help as I would end up completely abandoned by anyone and everyone I cared for, or I thought might care for me. To admit how bad things were would only drive everyone away, leaving me alone and suicidal, with no way out.

I was lucky then on two fronts. First of all I managed to overcome the darkness for a brief moment, long enough to scream for help. Secondly and more importantly, I have friends who love me, who picked me up and carried me until I was well enough and sorted enough to manage on my own again. There are no words to describe how much that meant and means to me; nor the difference it has made to my life and quality of life. I am now in new accommodation, with a lovely view of a pony field, it’s quiet and I can hear birds singing, instead of phone boxes being vandalised. I’m still exhausted and I’m still an anxiety freak with an over active imagination, but the unending bleakness that was becoming synonymous with living has gone. Really, ‘thankyou’ is a word which seems poor and inadequate.

So, when I say I went to my GP and demanded a referral, what I mean is that I went, with Helen to the GP and she spent much time shouting at him and telling him what a massive wreck I was and bloody do something about it, and by the way, there’s this guy in Leeds and sort out a referral to him and to the pain clinic.

Still not seen Doctor Suralaya… apparently he goes on holiday a lot and so my appointment keeps getting put back.

Thanks to the tireless efforts of Majid, administrator at the GP’s surgery, I do finally get in front of Paul the Sarcoid Doctor at Leeds General Infirmary. I’m not, I have to say, a massive fan of coming here. There’s no parking to speak of, with the nearest being a multi-story NCP about 10 mins walk away. This wouldn’t be so bad, except it’s NCP prices and I was almost at the hospital when I realised I’d left my phone in the car, mounted to the windscreen (in its alternate role as a satnav). This meant walking all the way back, retrieving the handset and then returning (now late) to the hospital.  When I got there it wasn’t so bad really. The usual drab institutionalised colour schemes in the paintwork (I am sure there must be government guidelines which state that NHS properties must be decorated in horrible colours) were all in evidence, along with a few out of date magazines and lots of bored looking people waiting about to be seen.

I was just settling in myself for the long haul, when I was collared by a nurse for the usual height (unnaturally tall), weight (fat bastard) and so on.  Today they also wanted me to do a lung capacity (or something) test. I had to breathe into a tube, whilst a needle drew a graph across a piece of paper. The nurse informed me I needed to get three roughly identical traces, to eliminate any freak results.

Now, most of you will know I’m a gamer. I do like to play games, computer games. Well, here I am with a thingy I blow into and a ‘score sheet’ in front of me. Getting three roughly identical traces was difficult, therefore,  as I kept beating my high score and had to go again and again. During this time, the nurse was telling me how she had binned her recent boyfriend for playing too much World of Warcraft. I wasn’t really paying attention, just trying to get that stupid needle to register bigger and bigger numbers. Finally I was able to match my high score three times in a row and was told it  was very good. I was feeling a bit dizzy from all the hyperventilating, so I didn’t think to ask if I was best of all the patients who had been tested that day, but as I put in a lot of effort, I’m going to assume I was.

It really wasn’t long after that when I got called in to see the consultant as well. Doctor Paul was a refreshing change, quite frankly. My GP loves to wax lyrical about how he knows nothing about sarcoid. “You’re my only patient ever with sarcoidosis” he delights in telling me. Well, pal, that’s all very well, but I am your patient, so go read up on it. Git. Dr Paul knows of what the fuck he speaks.

Up until now, I’ve been despairing of the medical profession. I clearly know more about my condition than 95%+ of the doctors in this country. Paul the Sarcoid dude, however, clearly knows more than me. First of all he asks me some sensible questions, like have I been exposed to beryllium?[1] Which I haven’t. Am I avoiding too much vitamin D[2]? Yes, I am. Then down to business, he’s checked all my scans and tells me that my lymphadenopathy[3] is confined to the centre of my chest and that I also have some minor (so minor as for him to not care) lung sarcoid as well. Under the circumstances, he doesn’t want to treat as that would mean steroids and it’s not worth it.

Then he drops the bombshell. He doesn’t at all believe my shoulder pain is even slightly related the sarcoid.  Do I have sarcoid? Yes. No question, but this is a random incidental diagnosis, picked up by chance starting with x-rays to check my shoulder.  He wants me to see a rheumatologist as it may well be something arthritis related my neck causing a nerve pinch or some such. This is actually fine as I already have an appointment to see the pain clinic at Dewsbury District Hospital where they will look at rheumatic issues. He also observes that as I am a big guy (“like me,” he says, patting his tummy, “you’re a bit overweight.”) and on hormone supplements, I may be prone to obstructive sleep apnoea, so he wants me to do a sleep test.

Doctor Suralaya again puts the appointment back, this time there is no reason given. Oh well, Dr S. – I’ve found another chest consultant in the meantime, so screw you.

I also get to see Professor Vowden at BRI, the local grand fromage in the field of vascular surgery, who has a look at my mad sticking out vein. He surprises me by being well versed in my case, having clearly taken the time to properly read my notes. He is of the opinion there is little or nothing he can do, but promises to take my scans to a meeting of senior consultants and radiologists for a bit of show and tell to see if anyone there has a bright idea.

This brings us to the past couple of weeks, then, which have been a fair flurry of activity.

On the 18th of last month, I finally was able to attend the Dewsbury and District Hospital. This is a bit of a strange place, hidden away in the middle of a housing estate. It’s also very quiet, so much so that I am put in mind of that rather haunting tune The Specials created during my childhood (and still one of my very favourite songs of all time). Indeed, this place, is coming like a ghost hospital. Normally hospitals are buzzing and full of life. I walked the empty streets and alleyways of the campus, not seeing a soul, finally finding my way to the door of the building where my clinic was. There were people inside (fortunately) including staff. I was on time for my appointment and with no messing or fuss, was whisked directly in to see the consultant[4]. He welcomes me to his office as “the walking text book”, which I accept with mixed feelings[5]. We discuss at some length what my problem is and what to do about it. He largely concurs with Dr Paul that there is probably something nerve related going on, especially as I have the numbness in my thumb. He then does, what I think should have been done *months* ago. He orders an MRI scan.

The following day I go and collect a device from the sleep clinic at LGI for my sleep study. It’s basically one of those things they put on your finger which measures pulse and blood oxygenation. This finger thingy is then connected to a little pack which goes on your wrist, which records ongoing measurements onto a memory card. I’m told I need to sleep with that on and bring it back the next day. Fortunately, I can take my sleepy pills as normal and it won’t make any difference. The temptation to play with the thing (press a button on the wrist watch and it lights up with the current readings) keeps me awake for a little while, but it really doesn’t have any kind of scoring system which I can affect, so I bore of it quickly and manage to sleep fine, strapped into my Borg attachment.

Coming up to last Thursday then, I again visited the good Professor. He’s quite a portly and happy chap who does exude an air of knowledgeability and so inspires confidence. Sadly he tells me that there isn’t anything he can do, or as he puts it “you are safe from surgery from me”. He suggests that the mad vein is on account of a lymph node causing a blockage somewhere on the way back to the heart.

Yesterday I had the MRI, back at the ghost hospital. This time there was hardly anyone inside the buildings either. It’s a very eery place, I can tell you. I had been concerned about fitting into the machine and it was a tight squeeze, but I did manage it, much to my relief. Noisy bastard thing and they piped radio 1 (the horror!) into my protective headphones, yuk.

And this morning, Dr Paul rang me on the phone.

I have to say, I like this method of dealing with stuff. I am frankly a bit fed up of having to go to the hospital for a brief conversation with a doctor. It’s a massive hassle and chunk of time, not to mention a huge waste of resources at the hospital. Receptionists, nurses and so on all cost money, so the less patients they need to deal with, the better – certainly worth the costs of a phone call – by all means, if you just need a quick chat, call me. Perfect.

So he calls me up with the results of my sleep scan. Apparently I score 7 (an hour). This is how many dips in oxygenation there are, which could be interpreted as obstructive sleep apnoea. My first thought is that this means I clearly have rotten sleep, but he quickly explains that a completely normal person scores 5 and a person with a real problem scores 15-20. I therefore may have very mild apnoea and certainly not serious enough to need the treatments[6] they can use, which would likely be counter productive. My fatigue therefore is definately from the sarcoid and not from some other issue. He says it will probably go away, but could be 2-3 years before it does. I inform him that meantime, I’ve started wheezing and popping a bit when I’m laying down, so he will be ordering up some full lung function tests.

He then asks me how I would like to proceed, being as I’m supposed to be seeing Doctor Suralaya, the local chest guy. I inform him that I *still* have not been able to see Dr S, nor any member of his team, so would much rather continue under the care of Doctor Paul, in whom I have some measures of confidence. He is cool with that and will see me again when he’s got the lung function results. Also would I kindly ask my pain clinic to foward him the results of my MRI – of course I will be pleased so to do.

I now plan to call BRI and tell them not to bother with Dr S, as he’s obviously way too busy to see me and I’ve found another consultant in the meantime.

So – progress is slow, but I think we might finally be getting somewhere. I have a proper doctor who knows what sarcoid is all about and another one who is intent upon fixing the shoulder pain. I’m still popping pills like a proper junkie, yet am having some hope that I now have the right medical care which will be able to, if not cure everything, at least improve things. Quality of life is hard to maintain when you are completely knackered all the time.

Naturally, don’t hold your breath for further updates. I’ll likely write something when I can again be bothered.

[0] Fatigue with associated insomnia. Not to mention being kept awake with an ouchy shoulder.
[1] Beryllium poisoning can cause many symptoms which appear almost identical to sarcoidosis.
[2] Too much vitamin D makes sarcoid worse, so on the advice of my physician, I choose to ignore all the latest government shit about Vit-D intake.
[3] Oversized lymph nodes.
[4] Whose name I forget just now.
[5] Amusement, annoyance, intrigue and others I can’t be bothered to list.
[6] A mask thing with positive pressure to keep the away open.

I hope you all had a very merry, Christmas, ideally fat and drunk and not too much pain from the in-laws. I know I did and being as I have no in-laws, I was certainly spared any of that kind of nonsense. Lucky me.

Shortly before Christmas I went to visit Richard the surgeon, but before I get into that, here’s some highlights of the last nine months, since waking up in early May with a bit of a sore shoulder. I will be shamelessly reusing footage from previous episodes, if it helps, you could cue up something like Eye of the Tiger, or similarly inspiring montage music as you imagine me looking buff and heroic, surrounded by hot nurses and complicated machines from some science fiction ‘B’ movie[1].

So, it was May. The usual sort of May, where spring blends gently into summer, bringing tropical rainstorms and the promise of another eight weeks of poor quality jokes about the British weather. A balmy May, a wet May, when she walked into my office, her tall heels clicking against the faded linoleum and a cocktail cigarette smouldering from a long turtleshell holder. A black gloved hand delivered the tip to her mouth, blue smoke passing over glistening ruby lips as she inhaled deeply, studying me from dark seductive eyes.[2]

And then I awoke, the alarm as usual dragging me into the realms of wakefulness and the reality of getting out of bed to go to work. This morning, however, my shoulder was a bit sore. No matter – must have slept funny. Couple of ibuprofen and all will be well.

But of course it wasn’t. A week later I was in my GP’s office complaining about shoulder pain. What followed was a referral for a shoulder X-Ray[3] then an ultrasound[4]. I should point out here, that I have just compressed several weeks into one short sentence. Unless you are an in-patient, or an emergency, the NHS makes you bloody wait for routine scans, or the results of routine scans.

Which by the way, I know we all complain about, but it could be worse. I have friends in the US who struggle to get all the treatment they need from their insurance. I have one friend in the US who simply cannot afford insurance whilst in college, if anything happens to him, he will be proper fucked. For all we, in Great Britain can bleat and whine about the NHS, we get treated, perhaps more slowly than we might like, but we get treated.

It was while I was having the ultrasound that things started down the road from shoulders into chest problems, it was the ultrasound doctor who said they wanted a chest x-ray. I was to expect the results in a couple of weeks, so I knew, beyond any doubt that something was up, when less than a week later I was summoned for a CT scan.

So this was the beginning of August (yes, we’ve skipped June and July trying to get basic scans done) and they are telling me I have cancer. I’d like to take this opportunity to thank a couple of people at my GPs surgery for their support at this difficult time.

Firstly Julie, the practice administrator. I’ve known her a very long time, as she worked for my previous GP, moving to my current GP, as I did, when the previous one retired. I had been summoned to my GP just a couple of days after the CT, so was pretty worried and it was nice that she took the time to let me know.

Secondly, Doctor Zahir Mughal. I would like to thank him for his hilarious stories of patients dying of cancer when he was a houseman in some hospital in his youth. Terribly amusing and wonderful to hear him tell them, just after being diagnosed myself.  I’m sure he thought it was all very fun and supportive. I suppose I was in too much of a daze to care, really.

Actually, I would really like to thank you lot for all the well wishes, when I first posted about it. As Kirstie said, it sucks arse getting that sort of new and you suddenly feel very alone and vulnerable, so knowing people gave a shit was welcome and comforting.

Now then begins the complete rollercoaster of hospital visits, seeing Doctor Lisa, Doctor Alan several times and trying all kinds of crap to get a lymph node. Let’s be clear, this is August and it’s going to take them until November to manage to get a sample.

First of all, Doctor Lisa can’t find one by prodding me about.

The Ultrasound people can’t find a decent one in my neck (or, oddly my painful shoulder).

So we give up on easy to get ones and try aspirating a sample via endoscopic ultrasound. I’d just like to repeat it was a bloody horrid procedure and how the idiots managed to fucking COMPLETELY MISS the target, given they are using ultrasound to see where they are going…

And finally to surgery, which involves starting on trips to Leeds to see Richard the surgeon.

It’s interesting to see the differences between hospitals. No doubt St James in Leeds thinks they are a by far superior hospital to poor old Bradford Royal Infirmary and in many ways they are. BRI has nothing like the shopping centre in the heart of Jimmy’s. BRI does not have a chain of coffee shops scattered liberally around the campus. BRI is certainly much smaller. And yet, BRI has a number of advantages from a patient point of view. At Jimmy’s if there is a television at all, it’s showing a slide show of appropriate advertising. Word to the wise, free-to-air channels are free, so you could show something. I’ve done a lot of waiting in a lot of waiting rooms and I can tell you, that despite my various observations on the particular TV shows which have been on, something is always better than nothing. Waiting rooms are BORING. Furthermore, BRI has free wi-fi throughout, whilst Jimmys struggles even to get enough reception to make a phone call.

See, it’s all very well having smart lounges and trendy coffee shops, but we patients still have to wait in the WAITING ROOMS and at Jimmy’s there is no entertainment of any kind, except for (if you are lucky) some very old well thumbed magazines. I suppose the answer is that coffee shops generate revenue, whilst wi-fi costs money, but surely if BRI can manage it, Jimmy’s can.

On to the surgery then and after two attempts to get the bloodwork right, I found myself laying on a bed just outside the operating theatre, with my head swimming as the anaesthetist hit me up with the first of his drugs, if only he had held off on the rest so I had time to enjoy it, but no. Off I went, waking up some time later and arranging a room upgrade for the night, certainly not by fair means and I think I can safely say, by foul!

Biopsy finally achieved, the lab checks are done and Doctor Alan pronounces the result of sarcoidosis to me.

So finally, I find myself back at Jimmy’s talking with Richard the surgeon. On this occasion I am fully dressed and don’t need to be wheeled in on a trolley. As usual I have no signal for my phone. I’ve been here a while now, as they wanted me to get a chest x-ray before I saw him. Presumably they wanted to be sure they left any scalpels or some shit inside me, I guess they didn’t find any. He has a look at the healing scar and we exchange a few pleasantries before he says that he is happy and all done. So I ask him, what about the bizarre random blood.

You will all, of course, remember that my surgery had to be delayed on account of this. Despite spending the better part of a day being messed about[5], there was a problem with the blood on the day, so further tests had to be done.

Richard the surgeon nodded and made a phone call to the blood people to ask what the problem had been. I kind of felt sorry for him, he’s a chest cutter and as he pointed out he works between neck and knackers. Blood antigens and antibodies really not his thing, but he cast his mind back to medical school and struggled through.

So, they found some kind of autoantibody in my blood which they weren’t sure about and didn’t have the relevant kit to test properly. This is why they then sent off some blood to the special blood testing people. They were able to take the particular antibody and look at it. Having gone through this they determined there was nothing to worry about. Plain old A+ blood would do me just fine.

End result – I do not have bizarre random blood. I have awkward bastard blood. This then, is pretty much in line with the rest of me and I think on balance I approve, even if it did delay my surgery.

And so I wish you all a very happy and prosperous New Year. I have now been referred to see a chest specialist at the beginning of March who will decide how to proceed to deal with the sarcoidosis.

Until then, my shoulder is still sore.

[1] And all overseen and operated by Oscar Goldman.
[2] Or at least, these are the sorts of dreams I would wish to have.
[3] Result: Normal
[4] Result: Also Normal
[5] Seriously, it took longer to do the pre-assessment, than it took do to the actual surgery.

Yes, ladies and gentlemen, boys and girls, it’s official. There is zero evidence of Lymphoma in my biopsy. I don’t have cancer and am in no imminent danger of being given X months to live.

Yesterday I went back to visit my chums in the Haematology and Oncology department situated in Outpatients West at BRI. I’ve described it at great length in the past, so won’t get into lots of detail, except to say that some awfulness was on the TV which seemed to be some kind of kids version of “Gladiators” with some Ant and Dec clones babbling away (silently with subtitles).

Nobody offered me any tea.

On this occasion I got to see Doctor Adrian, the mop haired vaguely mad chap I’ve come to know over many years. As usual he struggled to get his concepts across in laymans language, but was able to inform me that I have Sarcoidosis, a condition I know very little about other than it is a standard plot device in House, along with Lupus and Wagners’ Disease. It looks like I’m showing pretty typical symptoms, presenting with enlarge lymph nodes in the chest, but not elsewhere and my biopsy is full of granuloma which are sarcoid in nature.

From what I have been reading sarcoid is an auto immune thing, where the t-cells cluster up in whichever organs and form clumps, which are the granuloma they see in my biopsy. Nobody really knows why and there is no definitive test for sarcoid. The only way to really diagnose it is by ruling out everything else. Long term prospects are pretty good on the whole, but it does need to be addressed.

I think one thing I badly need to stop doing is looking up shit on the Interweb. I’ve been reading about this condition and basically, any {insert symptom here} is an indication of Sarcoid. Feeling a bit depressed? Sarcoid! Feeling a bit tired? Sarcoid! Ankles hurt? Sarcoid! Generally unwell in any way, shape, manner or form? Yes, that’ll be the Sarcoid! I’m thus unsure if I can ever be ill with anything else ever again. I forsee myself walking into my GP having spontaneously grown an extra nose out of my arse[1], and he’ll be saying “Ah, yes – this is a typical symptom of Sarcoidosis, we’ll treat with steroids.”

So, for those of you who have been reading these musings, I can report that the journey is not yet over. More tests are required to see what organs are affected and in particular, the lungs need testing. Of all the organs in the body, the one which is really badly affected by Sarcoid is the lungs which can be left permanently scarred. Doctor Adrian is therefore referring me to a chest consultant, who will more than likely be wanting to do a battery of lung function tests to ensure my lungs are working properly. As an ex-smoker, I wish the lung doctors all the best with deciding which damage is from the nic sticks and which is from sarcoid.

Which leaves me only to report on the mystery of the bizarre random blood, which delayed my surgery a couple of weeks ago. You may recall that despite having spent a day poking, prodding and sticking me with needles to prepare, for some reason when it came to the actual day, Richard the Surgeon decided he couldn’t cut me up because the blood was the wrong type and I needed the bizarre random blood on standby just in case.

As this may well be the last time I see Doctor Adrian for a few months[2] I asked him about this. He made a few phone calls and said they would get back to him. Meantime he gave me a new prescription for the epilepsy[3] drugs his colleague Dr Sood had given me a few weeks earlier and told me if I popped back after I’d picked those up, he’d hang about and tell me what he had heard from Jimmy’s. All things considered, he might be a mop-haired mad professor type, but he basically a good egg.

The pharmacy was very busy indeed. This meant that I got to play a good few rounds of “My Paper Aeroplane 2” whilst waiting for my drugs and so it was gone 5pm when I got back to outpatients west. On arrival I was intercepted by the (apparently popular and in demand) Staff Nurse Ellie who whisked me into the blood test unit and informed me that the phlebotomists[4] had gone home, so she was going to do me some bloods and Doctor Adrian would see me after. Unfortunately, her first attempt was quite frustrating, for whatever reason, although my vein didn’t want to bleed into her needle, though was quite happy to bleed profusely out of the hole the needle left. We decided to throw caution to the wind and she next went to my other arm and attacked the mad sticky outy vein with much more success.

Many tiny bottles of blood later, I pottered along to Doctor Adrian’s office to see what was going on. He was able to tell me that the basic news was that I am A+ blood type. This comes as no real surprise as my Dad is A+. He believes my mum was also A+, although my sister is of the firm belief she was O-. In either case, genetically speaking, (O-)+(A+)=(A+) so that’s what I am. As for the strange antibodies which contribute to the bizarre randomness of my blood, he couldn’t comment as they didn’t have that information to hand. So – he’s ordered these blood tests, to be sent to the local transfusion service. This means that they will have done complete tests of my blood type and any odd antibodies that are present and these records will be permanently available in the Leeds/Bradford area, which will mean that if I need a transfusion at any point in the future (locally at least) that information is immediately available and there will be no confusion.

I should be able to find out exactly what is going on, from the results of these tests, which I will be able to (with any luck) ask Richard the Surgeon about, when I go and visit him in a couple of weeks for a check up.

[1] Clearly the worst possible place to grow an extra nose.
[2] I still need to go back next August for my annual ‘let’s make sure you don’t have myeloma’ test.
[3] Also peripheral neuropathic pain
[4] Professional vampires

It was the 7th November. Now moving into month 7 since I reported to my GP in May that my shoulder was hurty, and I was back in BRI.

On this occasion I saw a Dr Sood. This is the last of the trio of consultant haematologists, so I have now collected the set. This will, as normal, allow me to charge double rent and I have grand plans to build a number of hotels, which will allow me to supplement my income in grand style. I knew I was still waiting for the surgery and so couldn’t expect him to come up with a diagnosis, but I was hoping he would have the results of the venogram that had been done and could shed some light upon the whole shoulder pain issue.

Well, the short answer is no. Or, perhaps, both yes and no. The venogram did show some constriction of my cephalic vein, which was causing other veins to have to carry the extra flow (you can see one sticking up on my arm, lovely) but what was causing that remains a mystery. He now believes that this is, after all, related to my lymph nodes problem and that it is more than likely a lymph node which is pressing on stuff in there. Along with that, it’s probably pressing on a nerve which is causing the shoulder pain. He’s given me (yet) another type of painkiller, gabapentin, which is used to help with peripheral nerve pain[1] and this is proving reasonably effective in conjunction with the opiate based stuff, which is quite a relief. On my way out of the door, I happened in to see Dr Alan, who asked about the surgery. I was pleased to be able to tell him I was due to be admitted tomorrow[2].

Thus the following day, in accordance with the instructions from the hospital, I called the ward to see if they would have a bed for me. You have to call, in case they have been deluged with emergencies and won’t be able to admit you. I would like to believe I am next on the list after emergencies, being on the ‘fast track’ and so I was concerned to hear a lot of “we don’t know yet” and “we are very busy” types of noises. “Please call back later, or leave your number and we’ll call you.” I left my number, but also called back several times during the day, getting more and more worked up as time went on and the day slipped further and further away. It’s bad enough that one is expecting a surgery under general anaesthetic, without being kept on tenterhooks about one’s hospital admission. Finally, late afternoon, they told me they could get me in and could I turn up about 7pm.

About 7pm I arrived and was asked to sit in the day room for a while, as my bed still wasn’t ready. This room has some modern conveniences. It has a television. Of course this is the ward’s television and remains tuned into soaps, car crash tv, and the worst of daytime entertainment[3], with the remote guarded by fierce looking harpies[4] who, with minds already reduced to lime jelly, require their fix of everything that’s worst about daily televisual programming. If one sits right at the back, with one’s phone pressed against the window, however, one can just about get a signal and a data connection. I therefore passed the time trying to get facebook to work until finally, blissfully, they told me my bed was ready and took me away from Corrie hell.

It was a pleasant room, all to myself, with an ensuite and again, a spot near the window where I could just about get Internet. A TV would have been nice, but one can’t have everything. Shortly before midnight they brought me a sandwich and a scone, telling me that once I’d eaten that, I wasn’t to have anything else until after the surgery. I spent a restless night, dropping off to sleep just in time to be woken up again for blood pressure checks and so on, falling back to sleep just in time to be woken up again by Richard the Surgeon.

Richard the Surgeon informed me that they had the wrong kind of blood. Now I’ve noted this in a status update I know, but to recap – I apparently have some rare antibodies in my blood which mean that normal blood of my type[5] simply can’t be used. My surgery had a less than 1% chance of needing a transfusion, but nevertheless without the correct blood on standby, Richard didn’t want to do the surgery as it was an unecessary risk. Further blood samples where taken, in particular for sending to Seacroft Hospital which is the local centre for the bizarre random blood I apparently need.

Now, excuse me all over the damn place, but what the fuck was the point of my coming in for a pre-assessment if not to determine what fucking blood I might want. They took enough damn samples of the stuff, why do they only decide on the morning of my surgery that they’ve got the wrong gear? Someone somewhere royally fucked up and I was not happy and not impressed that all Richard the Surgeon could do was to send me home again, with a view to coming back next week when they’d have the correct blood.

And so next week arrived and again on Monday morning I began the stress of seeing if they had a bed for me. I guess I was lucky as it only took them until lunchtime to decide that I could come in at 4pm.

4pm I presented myself as instructed at the ward. Of course my bed wasn’t ready. If someone can explain why they tell me to arrive at 4pm, when I won’t have a bed until 7pm I’d be grateful. My unecessarily early arrival meant I was subjected not only to additional hours in the day room from hell, but also an extra hospital dinner I might otherwise have avoided. Nondescript chicken pie, with overcooked green beans and mass produced croquette potatoes, followed by bakewell tart with industrial strength pastry and yellow goo pretending to be custard. Yummy.

So yes, eventually I’ve got a bed, but sadly on this occasion I’ve not got a private room but am sharing with 3 other guys. There’s one chap admitted at the same time as me. He’s reading his book and keeping himself to himself. There’s old guy, who is sitting in his chair and just stares into space and there’s tube guy who has drains attached to some kind of noisy machine which buzzes and sucks and gurgles in a most disturbing way. I feel particularly sorry for tube guy, when I overhear a conversation in which he is going to be sent home, still with the drains attached.

On this occasion I have made better preparations for entertainment. I have loaded my phone with video, books and music, so I devise a method by which I can use the paper books (woodpulp is so last decade) to make a suitable stand for my phone, so that I can lie in bed watching “The Martian Chronicles” with my headphones in and thus shutting the world out. Another restless night passes in a hospital bed. You see, it’s not that they are uncomfortable, it’s just… stuff is always happening and tube guys drains keep kicking off and there’s the stress of knowing the surgery is in the morning and well, it doesn’t make for a decent night of sleep. Nevertheless I finally drop off.

I have a number of dreams, the final one of which concerns one of the cuter nurses on the ward and those activities I would[6] enjoy sharing with her. I therefore have a very difficult moment, when I open my eyes, and said nurse is but two inches from my face, her eyes gazing into mine and she says “Sorry, I didn’t mean to wake you.” At that instant, the line between dreams and reality are very blurred and it is likely only my vague dozy surprise saves me from signing the sex offenders register. Having gotten over that, it turns out I’m second on the list for surgery and need to get dressed in the usual theatre gown and the sexy support stockings designed to prevent a deep vein thrombosis.

At about 11am a butch looking lady with a trolley arrives to take me off to theatre.

So I’m now just outside the door of the operating theatre, being prepped up and getting my vein spiked by the anaesthetist (I never learned his name), whilst chatting with Richard the Surgeon about how my blood issues aren’t in his notes either. The anaesthetist tells me he’ll be giving me a series of injections and at the last one I’ll be out. He begins with some strange looking white goo…

…seconds later my head is swimming. “Whoa!” I remark. Much amusement circles the room. “That’ll have kicked in then.” Replies Richard. “Yes.” I reply. “Just leave me like this for half an hour or so…” I trail off as the next drugs are administered…

 I’m on a trolley being wheeled somewhere and I need to move my arm and can’t. It’s vitally important to move my arm, for some reason, but I just can’t seem to move it. Or speak. Someone is telling me everything has gone fine and I’m out of surgery and being taken to the recovery room. Very slowly, reality and control of my body begin to return and I can move my arm again, though can no longer remember quite why I had wanted to.

My time in the recovery room was not the best I’ve had. I started to feel very ill indeed and vaguely was able to vocalise my distress. At this point there was much running about and even another anaesthetist rushed in to check on me. Apparently I was very unwell indeed at this point, looking clammy and ill with a blood pressure of 63/30. Quite the emergency. Fortunately, my BP recovered quickly and I was past that problem only to completely lose control of my bowels with corresponding pain in my guts. Fortunately, in such a situation I am not easily embarrassed. I’ve just come out of surgery and definately need looking after, so ok, I’m sure it wasn’t the most pleasant job for the nurses, but there wasn’t much I could do about it.

This incident, however, proved to be a master stroke.

If the patient is exhibiting diarrhea in the recovery room, then perhaps he has some kind of INFECTION! Now, it’s fair to say I was fine before surgery and it’s a bit of a coincidence that just after surgery I’m suddenly ill. Likely something they’ve given me, perhaps a big belt of antibiotics or something, has made me ill, but they can’t take the risk. I might have an INFECTION and I might spread that to other patients and INFECT them as well. This means that the ward has to rearrange stuff, so that instead of going back to my shared accomodation, I get sent back to a private room, this one with a fully working DVD player![7]

My advice then, to anyone who has the unavoidable necessity for surgery under general anaesthetic, is to shit yourself in the recovery room, in order to get a room upgrade. I’ve tested this and it works.

Little more to say then. I got over the anaesthetic slowly, but steadily and was up and about later the same day, getting kicked out of hospital the following afternoon. I currently have a nice looking slit along the base of my throat where they went in to do the surgery and my stitches will dissolve when they are good and ready, I guess. I am told that they got the sample they needed so I hope to have a diagnosis very soon, by which I mean next Monday when I will be visiting the haematologists at BRI again.

I will also ask them what on earth is up with my blood. I have a suspicion I may need to have this information again at some point in the future, knowing what’s going on may make things easier.

[1] Also for treating epilepsy. Not sure how I feel about that!
[2] By which I mean 8th November, the day after my BRI trip
[3] If you can call it that!
[4] aka Female patients
[5] Despite asking repeatedly, nobody at the hospital has so far been able to tell me what my blood type is, it’s not in any of the notes.
[6] Erm.. subconsciously of course *cough*
[7] And my thanks to Andy & Helen for dropping me off some DVDs to watch.

It’s been a while since I wrote more than a couple of brief status updates concerning my hospital based adventures, so I think it’s way past time for a complete update, giving full and frank disclosure about what has been going on over the past couple of weeks.

 To pick up the story, last I wrote I had been summoned to Leeds, attending St James’ Hospital for the pre-assessment for my surgery. During that event I had been informed that a new CT scan would be needed, in order than the surgeon would know where to stab.

 We resume the tale, therefore on the 27th of October, when I am scheduled to be scanned. This is a bizarre day for a number of reasons. Firstly, I decide to drive to the hospital. This may seem very normal to most people, except that I hate driving in Leeds as I inevitably get lost.  Don’t ask me why, but I have this bizarre mental block which seems to make the roads fail miserably to fit the maps I have previously examined, so regardless of how much preparation I may have made, I always end up taking a wrong turn somewhere and taking twice as long as required to get to where I need to be. This trip is no different and is especially hampered by the helpful road signs pointing the route to the hospital being unhelpfully positioned just far enough beyond a junction to be only of use to those who have already selected the correct turnings. Still, I only get lost twice, which isn’t bad for me and I get to hospital in good time.

Here then is the second bizarre item. I get into the multi-story carpark and amidst the hundreds of cars, ‘the’ parking space is free. The parking space nearest the hospital entrance. The parking space from which I can walk, in a straight line, as the crow flies, from car to revolving door. I mean, this multi-storey is rammed out with cars, but this one, magical, perfect parking space is free, waiting for me, beckoning me into its warm embrace. I confess I sat in the car for a couple of minutes, revelling in the experience as other less fortunate visitors had to drive past me and up into the heights of the carpark, to poor quality and inconvenient spaces, from which lifts and/or stairs would be required to get back to the hospital wing.

Having spent enough time savouring the moment, I casually get out of the car and stroll the few yards to the hospital, finding my way to the radiology department. As normal for this building, there is no TV, no wireless and no mobile signal – seriously for all this is a brand new wing and very much looks the part of modern healthcare, they are truly living in the dark ages when it comes to communications technology. Also, I am rather early, the traffic having been kind, so I am expecting a long wait and really would prefer to be in touch… or in truth, be able to cock about on the Internet wasting time.

Time indeed… time for the third bizarre event of the day. I am seen straight away, even though I am about 45 minutes early. They get me in, hook a cannula into my arm and whip me into the scan room where the machine awaits me within about 15 minutes of arriving. This machine is very different to the machine at St Lukes which I have spoken of earlier. It’s bigger and more comfortable for a start. They hook me up to the X-Ray dye pump and tell me to follow the instructions given by the machine. Again this is different from BRI, no angry American barking instructions at me, but rather a gentle female voice tells me, in an English accent when to breathe and when to hold my breath. I later learn that this is the recorded voice of the boss radiographer.

Job done quickly, speedily and efficiently, I am ejected from hospital, just in time to be in front of the rush hour traffic, thus getting home much more quickly than I expected.

All a very bizarre hospital trip, strange in how painless the whole experience was, an almost positive experience. I’d rather not have needed to go at all, but if you gotta go, this is the way you want it to be.

My next visit to hospital was for the surgery, then. I shall write more about this in another note, both to provide a suitable degree of suspense and also to prevent this note from becoming a short novel in its own right.

So… brace yourselves for deep anticipation of the next installment, “The Knife Man Cometh”.

On Monday I attended St James’ Hospital in Leeds, for a pre-assessment for my upcoming surgery. You may recall that after fannying about with various procedures the local medical fraternity have still completely failed to get any kind of lymph node sample and so they are now going to do what they should have done in the first place, which is cut me open, dive in and get some. This can only happen at Leeds, as they don’t do chest cutting in Bradford (for some unknown reason).

So, I duly arrived at St James. Well, I say I arrived. The day had started badly. I had downloaded a new alarm clock app which I had tested and then set to get me up in due time, booked a taxi to the station and knew the train times for Leeds. I had decided not to drive for various reasons, mainly not knowing the way or the state of the parking when I got there. The day promised to be a big arse stress without the additional headache of cocking about with the car. Unfortunately, overnight the alarm had decided that randomly flashing my screen on and off without making any noise would be a good way to get me out of bed, so by the time I woke up in a general state of panic, the booked taxi had long since given up and gone – and my train would be pulling out of the station. So, given limited time, I dragged myself out of bed and called a taxi, paying the price for my lack of decent alarm clock as he drove me all the way to Leeds.

 On the way, I deleted the new alarm clock app.

 Now, St James is big, really big, so I was glad that there were signs enabling my driver and I to navigate across the campus to the correct wing where I was dropped off. Inside it was all new and modern and terribly smart and I was easily able to get directions to where I needed to wait. A fun little note was on the wall talking about hygiene. It explained that all the nurses would be wearing short sleeves and the doctors would be similarly dressed, or with rolled up sleeves and no ties or jackets, this wasn’t because they were scruffy, it said, but rather to avoid the spread of infection. I wandered to the reception desk and asked for directions, being pointed to another reception desk further in the building who would direct me to to see the surgeon (or a member of his team).

I suppose I should have realised by the presence of a dog-collared hospital chaplain leaning on the second reception desk that things were about to go wrong. Clearly he was there to provide moral and spiritual support for the poor patients condemned to this part of the hospital. This is the point where things started to go seriously bad. The building was new, the paintwork was in a very modern shade of institution green, but there was something vitally important missing.

Mobile coverage.

I was in a black spot. Forget data, I couldn’t even send a text. I was cut off from civilisation and thrust back into the dark ages. At any moment vikings would be attacking, pillaging my valuables (not my phone, obviously, what with the lack of connection) and kidnapping the nurses. To add to my pain, there wasn’t even a TV. Or rather, there was, but all it did was show a slide show of advertisements. I suppose the posters of clichéd and twee poetry around the walls was supposed to somehow calm my disposition, but it was a nightmare. The walls began to close in as the net withdrawal began to set in fully. I needed a cup of tea and quickly, looking around desperately for some kind of kettle or vending machine.

There was none. A jug of water, the style one normally sees next to each bed in a ward was on a tray, with a little sign offering that patients should help themselves. If only there had been cups, some trauma might have been avoided, but no, even this was denied me. My mood, already dark on account of having to rush out of the house with no caffeine began to blacken further.

It is perhaps, for the best that I didn’t have too long to wait before the registrar (a scruffy chap in rolled up sleeves with no tie) called me into his office to discuss the upcoming procedure. He was also able to show me the CT scan from last August and point out the different bits and pieces. Here are lungs, here is the heart, and here is the…

…and it was at this point that I actually shut the fuck up. That lymph node is properly massive…

…It’s down in the middle between my lungs being all much bigger than it should be and stuff. I am very much torn, I have to say. Whilst I find these images of my insides generally fascinating from a scientific and anatomical viewpoint I really don’t know if I really wanted to know how big that lymph node actually is. The term ‘enlarged’ that they have been using does not do it justice, although I suppose ‘ginormous’ is not a term in general use by the medical profession. It’s pretty bloody big. I am pleased to state that on my paperwork, I could see “fast-track” stickers all over it. Knowing now how big it is, I’ll be very pleased to move as quickly as possible.

The operation then, which is to be performed under a general anaesthetic will involve keyhole surgery to send a camera down to locate the node internally, followed up by taking a good size sample suitable for testing. I signed the consent form (receiving the pink copy for my own records) and he wandered off to speak to the surgeon about fitting me in. This took some time, as the surgeon was also seeing patients. This wasted time, as I sat in the registrar’s office staring at a lymph node the size of a small astronomical body would be the cause of further difficulties, as I shall shortly relate. Eventually and, in fairness, apologetically, the registrar returned to inform me that he would get me in for a procedure on the 9th. I need to arrive on the 8th and will probably be released on the 10th. In the meantime, they’d very much like to get a fresh CT scan.

So, the next stage in processing involves a small hike. One is provided with an envelope stuffed with paperwork. I notice they had sealed it tightly, and scrawled on the seals so it would be more obvious if I opened it and read it all. I actually feel a bit aggrieved by this, it’s my notes, why shouldn’t I read them on the way? In any event, there were 15 lines of directions to get me from this department to the surgery pre-assessment department, which I gather is where ALL the pre-assessments are done.

After some muddling along with what turned out to be “almost correct but just wrong/inexact enough to create difficulties” directions I found myself at the windowed reception for preassessment. The delay at the registrar meant I had arrived just in time for them to shut for lunch and could I come back around 2pm? I looked at the time, around 12:15. I’m in Leeds, with nothing to do for the next 2 hours and I can’t even go to the boozer as beer will affect the pile of tests I’m about to endure. I express at some length to the receptionist my disatisfaction with this state of affairs. She puts on her best “you have my sympathies, but there’s fuck all I can do about it” face and gives me some directions which will lead to a Costa Coffee, nearby in the hospital. Thus resigned to being at Jimmy’s all bastard day I trudge down the stairs and along the corridors and arrive, not at the Costa Coffee. No mere coffee shop this, instead, these directions have led me, inexorably towards the…

**** St James’ Hospital Retail Therapy Experience ****

It is, perhaps, ironic that given all the recent articles about the potential health risks of infection from fish pedicures[1], that there is, within the actual hospital building itself, a beauty salon offering just exactly that service. There are shops, there is a hairdressers. There are restaurants and pie shops and yes, way over in the back there is a Costa Coffee. I stand, seriously in utter bewilderment watching people scurrying about, eating, buying, having their feet eaten. It is at this point that my phone rings. Oh bliss, delicious, wonderful connectivity, how I love thee. I stagger outside, retail confusion warring with restored connection, blinking in the sunlight to take a call from the office.

By the time I’m done, my mental state has been restored somewhat and it being lunchtime, and there being numerous food outlets, I go back inside and avail myself of the pie shop for a couple of pasties and a coffee, whilst considering my next move, there being much time remaining before I could get assessed. I guess I was lucky, as it was a wonderful sunny and warm autumn day and so I was able to sit outside and read my book. Well, I say book, obviously I mean my emergency e-book on my phone. I should state that I’ve given up reading Jules Verne for reasons I’ve given at much length in the past and am instead reading Harry Harrison’s Stainless Steel Rat series, which are much more fun, amusing and easy to read, which is sort of what one needs when being stressed at a hospital.

Around 1:30pm I decide to chance my arm and hope they are back early, wandering upstairs to pre-assessment. As it turns out I’m in luck and they are recommencing the processing of patients. A nurse “as soon as possible” is promised.

Pre assessment appears to be in a much older part of the hospital, in soothing instution blue. It has two very important things which were lacking elsewhere. A television which displays television programmes (BBC News channel on this occasion, very grown up!) and mobile coverage. I have to say however, I didn’t get much chance to enjoy either, as they are pretty bloody efficient in there as you are processed, conveyor belt style from one nurse to the next. A nurse for MRSA tests, another for the questionnaire. Amusingly enough I had the campest nurse in West Yorkshire performing my ECG which overall made the performance of failing to get any of the sticky pads to stick quite entertaining as he fought in excellently camp and flambouyant style to get the pads situated, electrodes attached and the infernal ECG machine to accept it had the correct connections to take the readings – stereotype and proud of it, I found this particular nurse’s efforts to be one of the highlights of an otherwise dull day. Finally the ward sister took all the blood tests and I was told I could go home.

Which I did, essentially uneventfully.

I am now awaiting an appointment for this next CT, which will likely be at Leeds again, as the Leeds doctors can’t order up scans in Bradford, but he said he would write to BRI and try to get the referring doctor there to order me up one closer to home. They will need to get on with it, mind, as there are now only 8 working days until I’m due to be hacked into.[2]

My next known appointment will be on the 7th when I am due to see my haematologist, who will hopefully be able to do something more about this shoulder pain we are also looking at, following on from the earlier venogram.

Now – I want to say something in all seriousness. Codeine is horrible. I have spent the past two-three weeks getting myself off this quite insidious drug, in a process of weaning down under my GP’s supervision. I had been taking the strong dose pills constantly for several months and realised I’d become completely dependant upon this drug, which many people don’t realise is actually an opiate. And so I went to my GP. Coming off codeine is horrible. I had physical and mental withdrawal symptoms, physically being sick and flu-like, mentally with anxiety and paranoia, by which I mean severe anxiety and severe paranoia. I say this, so that if anyone reading this ends up, like I currently am, with chronic pain, they will know to avoid an extended stay with the codeine. There are other options and I heartily recommend you discuss those with your GP. Codeine will seriously mess you up.  After a brief (and futile) flirtation with various NSAID type drugs, all as effective as tap water, I’m now taking Tramadol as and when I need it and I’ve been given a week’s worth of uber strength sleeping pills to get my head down and past the lingering anxiety issues as I am now utterly exhausted. Tramadol is another drug in the opiate family (though artificial, unlike codeine which is present in raw opium). It’s stronger than codeine, but at least for me (based on previous experience with a shattered elbow, inserted metalwork and extended rehabilitation) it’s not so addictive. So please all of you who read this, really take care with pain medication. Codeine pills are available over the counter in pharmacies, when they say don’t take for more than three days, they mean it. Go and see your GP, there may well be something outside the opium family which will work for you. Sadly, it appears, not for me, not this time.

I now have another new alarm app. It works. For those of you wondering why I’m not simply using the default alarm clock on my phone, the answer is simply that I can’t abide all the beepy buzzy alarm noises that it offers and need something a bit less like being smacked in the face with a brick, when being woken up.

[1] I had at this point intended to do some gag about the fish from the fish pedicure ending up in the restaurant, but that utter bastard Danny Baker did the whole whitebait thing on ‘Have I Got News For You’ over the weekend, which sort of spoiled it for me and indeed for my overseas readers, who do not get HIGNFY on their primitive television networks.
[2] In retrospect, I realise this is a pretty poor pun for an IT person to write, but as I didn’t notice it at first and it wasn’t deliberate, you can all suffer.