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”.