Monday, April 03, 2017

Tentatively towards a better me

The first week saw a paler me gradually emerge from the Homer shade of lemon. Appetite returned to one who has never had a problem in that direction before and the results of a renewed appetite was shown in the fact that I could almost go a whole afternoon awake. Other functions thankfully returned to normal, too. Tiredness remained, prewarned by a lack of cognitive focus I got quite good at being ready when instructed to go and lie down, which of course I did.

Midweek brought the phone call, then followed the letter and shortly thereafter the appointment at the specialist hospital. The letter was accompanied by an information sheet to the effect that parking was hideous, particularly in the afternoon and access was awful as road improvements rendered the approach roads all but impassable at busy times. Fortunately my sister and her husband live a few miles away on a bus route but we had a lift there and back. Wonderful.

The appointment was delayed about 45 minutes but it wasn't a problem and anyway, we didn't have anything else of import lined up. We met the first surgeon at 1600, by the time we left ninety full on minutes later we had met the main surgeon and the cancer nurse for this establishment who was just as lovely as her opposite number 50 miles up the road.

The first surgeon began by asking lots of questions about what I/we knew. All I really knew was that I had a lump in an awkward place and it had to go. This surgeon drew exactly the same diagram as the earlier one had on that Monday tete a tete. Yup, the tumour was in an awkward position, no one knew whether it was malignant or benign but most were malignant and chemotherapy would be offered after if needed. That would take place back from whence we came. And yes, it had to be removed.

Now he carried on drawing but this time he drew a schematic of how I would be replumbed. It was brilliant, I so got it. I was reminded of a Haynes manual and how you set about solving problems when the bits you have just don't go back together and you have neither spare parts or a big enough hammer. I never did delicate which is why I was so glad that he was the doctor.

The procedure is called a Whipple and the lump is by or on the head of the pancreas which is why it's so awkward. Again, no surprise there as it has been mentioned frequently that I have been known to be a tad awkward at times.

At which point Mr.Seriously Supremely Competent surgeon came in. Some carry weight and some authority. This man oozed excellence. Numbers, he talked numbers. Whoa, said I, hang on. Pictures, I'm good, words I can sometimes do, numbers, no chance. It appears that these were numbers I needed to know.

Probably my greatest achievement was to marry wisely. Numbers are loved by my wife who was obviously excited and writing with the air of one who knew the importance of numbers. Look, said I,  you tell her and she can tell me later.

He was great, he understood my discalculic quandary. Eventually he got to a number that I knew was coming. Weight. I have it in abundance. I hoped he wasn't going to tell me to lose a few stone, fatso or you've had it because I wouldn't and would have. He did suggest white meat, fruit and veg but I asked about pasties.

Eventually you may be able to eat a pasty but never a proper one in one go. Well, if it takes a few sittings to have a pasty, so be it. At this point, the first surgeon opined that in this case the extra fortifications would not be so bad a hindrance as skinny people can sometimes struggle to get through the initial post op months without dietician intervention.  Good news amid much good news. I ignore all the mortality rate stuff as it's out of my hands, I merely offer myself to needles and everything else just happens.

Prolific thanks to the pair of them who along with two other surgeons will spend 6 -8 hours replumbing the inner workings of my digestive system. In all, they were well practiced in the art of painlessly explaining the future of an awkward patient.

They left and a lady moved silently from the corner and sat between us. Quietly and deliberately she explained the ramifications of future treatment exactly as we'd heard from her opposite number a fortnight ago. More books, more pamphlets but she added the fact that she wasn't going to refer me to a dietician as I had ample calories to spare.

Shocked, I was shocked. How was she to know I wasn't a Guardian reader or a BBC acolyte looking to be a victim of vicious fattism. I could have been looking to be impugned. I could have been seeking any opportunity to be a maligned minority. I shouldn't have made light of anything but I'm not good at reading runes or people.

You are one in five, she said, for every one presenting with your symptoms there are four who will be told that their condition is inoperable. Your jaundice saved your life.

If I needed anything that Thursday afternoon I needed that. I was poorly, it was serious, they were going to sort it. I was of all men, most fortunate. I needed to realise it. Suitably chastened as deserved, I was consumed with gratitude and humbled at the realisation of the sheer magnitude of resources lined up to get me restored. But my overwhelming feeling was one of unworthiness at the sheer quality of personnel engaged in promoting my well being.

The waiting room was empty.
We went home.

Sunday, April 02, 2017

A short trip back

I didn't quite get to full strength coffee, partly because my coffee intake was below par, as indeed was I. It is surprising that I never felt bad, no pain, feeling nauseous but never sick, wobbly but never falling, brain scrambled but never unable to realise that it was so. A remarkable aspect is the fact that when my brain was (is) getting deranged I can start sentences but then I see words in my head, words that I want to use but it's like I can't grasp them and force them into the right order. Like Eric Morecombe, all the right words but in the wrong order.

Tuesday after a good sleep was lovely. No blood pressure being taken every few hours but bloods taken locally. Fresh air. It was good. But not for long. By early afternoon I wasn't feeling great but when friends come and tea is poured the spirit is raised significantly. When that particular friend trained as a nurse it's a bonus.

My wife was sat opposite me and like Dirty Harry, I knew what she was thinking. I, too, was wondering if Tuesday night would not be better spent in hospital.

The phone rang and I was requested, as has to happen I suppose, although lots of practice sees me deftly, politely but firmly asking the caller to speak to my wife. The answer was yes and yes I could come in tomorrow for the biopsy stent doings and yes I would be nil by mouth from about now.

That's all it takes to sustain you for another 18 hours when you're feeling lousy.

Wednesday just before midday, a bit early, sees us sat in a nurse's office as she pores over a rather deep sheaf of paper. There are a lot of bits of paper through which she rifles with some satisfaction it seems. Eventually she asks is "this" is your  signature? Could be, I said remembering the doctor on Monday morning. You have had so many cc's of this and of that. Again, I remember the ward sister on Monday morning not allowing the nurse to remove the cannula before she has administered whatever the syringes contained. You are ready to go, I was told, that has saved us a great deal of time.

Back in the waiting room I noticed the ward sister pass by just too late to speak. As she returned she paused as I asked who I had to thank for this? Her? Not only me she said listing others, the young doctor, the main man and the cancer nurse. Is there no goodness that the NHS doesn't do? I offered a totally inadequate thank you. What else can you do?

Next I'm in a robe in what appears a ladies wing of this area. The nurse in charge is muttering about so many extra people this afternoon as one senses a little impatience in a couple of patients. She then leans over, puts her hand on my shoulder and whispers sweet nothings to the effect, don't smile or look smug as the waiting time numbers increase but you are next.

In no time I had things done in a ladies room about which nothing will be said but I was judged fit enough. Then onto a trolley left side down and into a twilight room. The nurse we met earlier was preparing stuff and a nurse whose name took two full rows of a large name badge told me to call her Sue and she would hold my hand and I would do what she, but only she instructed.

Sharp scratch said a voice, in went a needle and the next thing I knew was that a man in front was twiddling wheels in such a way as to invite admiration as his attention was on a screen above me. A voice asked me to squeeze her hand if I could hear. Gently. Swallow four times and then squeeze again, please. Swallowing when a plastic broomhandle fills your throat is an interesting experience but not entirely pleasant. A few more instructions and squeezes and the twiddling man told me it was all done, smiled and the next thing I know was that I was back where I started. Sue told me to stay put so I did.

I think all that happened as I wrote but I wasn't totally with it. I do remember being wheeled past a waiting area where my wife was waiting so I asked if I could take that one. Not sure it went down well but she wasn't allowed in the recovery room.

I wasn't there long and to my right was a whiteboard with names on it. There were mutterings about there being 60 beds short and the man opposite had been there so long he was having sandwiches. I was thirsty. A man came in and wrote "Oak" by my name. Another man came over and asked me if I knew anyone in that ward. I only left it on Monday, I said. Well, they must like you because they want you back, he told me. Within minutes I was not only back I the same ward but in the same bed. Familiar fellow patients waved and familiar staff came to say hello. I could have wept, I was so grateful for all they had done. They were utterly magnificent.

Thursday, the doctor explained that he had referred me to the major centre 50 miles down the road, emailed them all my notes and scans and had a video conference with them that morning. They would discuss me at a weekly meeting the next day. But you'll be home later today and the stent will make its presence felt by outcome he said. The ward sister has arranged blood tests at your surgery.

That was pretty much it. Insufficient thanks expressed to the staff there,  goodbyes and best wishes passed to fellow patients and home again. Still a bit wobbly, still a bit scrambled, still as yellow as Homer but every day it got better and eventually after about a week the plateau arrived. Still not proper in every aspect but able to eat a pasty and more like a pasty in colour as well as shape.

Properly caffeinated as well but even that took a day or two.

A short trip home

Sunday night brought the paramedics into the bay opposite with an obviously distressed patient. You can't not look and you certainly can't not hear, even with an iPod plugged in. He looked awful and a deeply lemon colour. The young doctor arranged emergency treatment for the patient with liver failure.

He was swiftly tended, prepared and moved on. To where? I didn't ask but later I did comment on his colour to the nurse taking my blood pressure, temperature and pulse. Have you seen yourself lately, he asked? If he was fresh lemon you are a lemon beginning to dry out. Pretty yellow, then.

Monday arrived and so did a young doctor, another familiar face, to tell me that I was likely to be discharged that very day. Surprisingly I think I was not feeling well enough to experience excitement but the prospect of a good night's sleep did appeal.

This young man visited frequently, explaining that I would need no medication and if this then do that, which I can't remember which is why I needed my wife to be there. As she was to meet the main man. I do remember signing some papers and I remember the ward sister squeezing a number of syringes of clear liquids in the cannula just prior to its removal.

Sat on the end of my bed I saw the main man enter the ward whereupon he began wandering about, looking in offices before finally talking with the ward sister, entering a side room with her whereupon the occupant of said room was evicted and extra seats taken in.

This, too, had a degree of familiarity. The last time I witnessed such behaviour was as the doctor tried in vain to find a space to tell us the worst about my mum's cancer. At that time we met in a room from which the occupants did not leave but stayed at their desks carrying on as the doctor told us there was no more they could do. We kept quiet as my sister had arranged transfer to a hospice. St.Julia's Hospice were as excellent as RCH Treliske was shameful.

This meeting was in a quiet, calm, comfortable room with a delightful ward sister, an utterly confidence inducing doctor, a gentle supremely professional cancer nurse, my wife and I.

Eventually the word "cancer" was delicately dropped into the conversation but amid all the positives it was hardly a surprise when it came. The next phase would take place at a much bigger hospital 50 miles down the road.

Before that, however, they would restore my colour to something approaching normality. They would also do a biopsy of the unwelcome lump. This would require a procedure down the throat, through the stomach around the bend and down a bit from which a biopsy would be taken and a stent put in. This would make the juices flow and thus the derangement of the blood would become significantly reduced. It could not be done at the moment, though, so I could go home.

The ward sister had departed earlier now came back to tell us that blood tests would be taken daily at our surgery. Sorted. The cancer nurse explained a number of options but to be honest my wife's note taking is all I can really remember. I do remember her emphasising the fact that the blockage my not necessarily be malignant as she then told us of the down the gullet process that would take place and how we could not be fitted in for either Wednesday or Friday this week so expect early next week.

I also remember the pamphlets and booklets being offered, accepted and put in the handbag.  I see them frequently being read although I have to confess to not having read them myself, yet.

The meeting over and no medication to collect we were free to go. Amid heartfelt thanks and words that could never do justice to what was deserved we went.

Home was quiet, calm and so, so lovely.
The phone began ringing and the management adopted her secretarial role.
Visitors visited next day.

I had a coffee.
A proper full on Gaggia espresso coffee.
It nearly did for me and for the first time in my life I added water to an espresso.

Scan doulos ly well looked after

At the ripe old age of about 12 I was in a tree with others when I descended in the shortest distance and the fastest way possible. Some hours after dark I was in Taunton hospital being operated on. The following day I was told that I had ruptured my spleen and it had been removed. A smart elderly gent in a suit and tie showed me a manky lump of what looked like dirty cotton wool in a small jar and told me that it was the offender. I survived.

Thus when the ultrasound lady was showing me my innermost workings and remarked that my spleen looked good you will understand my surprise. I pointed out my not inconspicuous scar and she momentarily looked as surprise as I felt but confirmed her opinion that my spleen looked like a perfectly well formed and functioning spleen.

At the following morning's bedside gathering I did ask but no one seemed too concerned, which when I think about it is quite right, I was asking about a spleen that was as good as spleens get.

The MRI scan was the next experience. First there was the issue of internal diameter and girth. To say it was a close shave would be an understatement. The pad and straps were exchanged for thinner varieties as I could not be. The operator explained that they were to stop you moving once inside. We concluded that once inside I couldn't move if I wanted to, indeed, I couldn't even be slid in holding the alarm bulb thingy but I managed to slide it forward upon entry not realising that I couldn't hope to get it back. I heard a lady in the headphones remark that I was OK as my feet were tapping in time with the motors. 33 minutes later I was glad to exit.

Later that afternoon I was told that the doctor would visit on Saturday at 10. In all this the staff, everyone of them, toiled like slaves, never stopping, never being any other than delightful,  helpful, considerate and constantly prioritising seamlessly.  Watching them observe, a word here, an action there, a stop this attend to that, always, always, always.

Saturday morning I determined to ask about the case of the restored spleen. The doctor came as promised. This time he wore a serious face. It could be more serious and we're arranging a CT scan. I would have asked about the spleen but now was not the time.

Within an hour or two a nurse came by to let me know that a CT scan had been arranged for tomorrow, Sunday, he said with the air of one who was quite surprised. I hope my sense of humble gratitude was palpable and that he was aware of how thankful I felt.

Sunday dawned and even before the blood lady had arrived I was taken for a CT scan which, to my great relief, is a scanner with a greater internal diameter than the MRI. What's more, you don't go right into it you just slide about as it whirrs and grinds and eventually 900cc's of clear liquid makes you feel like you are relieving yourself and you get the sensation of a strongly metallic taste. It soon passes.

Back on the ward and life carries on. The ward sister tells me that the tests are all done and the doctor will see me tomorrow, later than usual. She "casually" asks if my wife will be visiting at the usual time. I expect so, I said and asked if the doctor could schedule his visit so as to coincide. Saved her asking, I hope.

Sunday had been an odd day for many reasons. Mostly because I had no option but to observe once again how wonderful hospital staff are to everyone, even those who barely show civility and those who don't even try to be civil in any way, but especially how they deal with the downright obnoxious, foul mouthed, ungrateful ingrates who seem to take pleasure in displaying the very worst of human nature to the very best.

Two wards a diagnosis

An x-ray at 0530 is not my usual start to a Wednesday but this was not a usual Wednesday for me but for everyone else it all seemed as normal as normal can be. At this time I was under the impression that I had a viral infection for which doing nothing but waiting for it to pass is recommended.

I'm not really conscious of many details about the x-Ray  but I do know that my next recollection is of a bloods lady asking me for my dob prior to relieving my elbow of a few more vials of blood. It was daylight and there were windows. I was on another ward, Lime.

I was next awoken by quite a crowd gathered about me. It seems that I was uncommonly yellow and my bloods were extremely deranged but there was no evidence of anything viral, so the tall, smart gentleman said. Your liver is functioning, though,  he said so it'll be a blockage, probably a small stone. Are you in any pain? No. Have you had any pain in recent days? No. You'll be having an ultrasound scan shortly so we can see where the blockage is. OK? Thank you.

A nurse came over and offered me coffee and told me my scan would be imminent as afternoons are mostly for pregnant ladies. The coffee was welcome. It would be churlish to mention that it probably hadn't been anywhere near a bean since it was sprayed against a rotating drum with a surface temperature in excess of 200°C, that being the temperature that turns coffee sprayed at high pressure into grains of solid soluble coffee. Instantly formed, instantly dissolved,  instantly forgettable but by far the best cup of coffee I'd had in what felt like ages.

The expected porters failed to materialise at the time expected but I had nothing else to do and they probably did. At this time I didn't associate their non appearance to the sounds of activity and the distant ringing of alarms. Once the part of the hospital which had been evacuated had determined that the threat was either accidental or otherwise unnecessary I was told to expect my scan early in the afternoon.

Thus, visiting time had hardly had time for pleasantries, more importantly for the handover of radio, iPod and earphones before the porters arrived to wheel me away.

The porter was hugely amused as he weaved his way around the ranks of pregnant ladies and into the room for me to be scanned. The process was fine albeit with even more acreage over which to spread the jelly than even a heavily pregnant lady would require. The scan provided a huge surprise for me and once completed I was wheeled outside and left amid rows of ladies looking at me until a porter arrived which wasn't very long. I think I'd have walked back to the ward but I didn't have a clue how to get there.

Visiting time was resumed, my yellowness noted, a drip replenished and music of my choice enjoyed.

The following morning the team gathered again. No obvious blockage so it must be something else, I was told. The blood lady was waiting for their departure which was odd as she'd only taken a fair drop shortly before the bedside team meeting. This time I clearly saw the laptop which shows my details and a spreadsheet of bloods required, usually three or four. This time there were pages and vials in abundance.

Before she had left a lovely lady doctor who had been a member of the team arrived. Held my hand and explained that whatever it was, however small they would find it. It was when she told me not to worry that I had a wispy stain of an idea turn into something more smoky.

She also told me that tomorrow, Friday, I would have an MRI scan and I'd be moved to another ward. The MRI was an experience and I was moved to Oak ward.