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.