This is the opening line to "Bring The Noise", the opening track to Public Enemy's 1988 release "It Takes A Nation Of Millions To Hold Us Back" (incidentally, the greatest hip-hop album ever). And in response to Chuck D's question, this week I was going to find it is pretty bloody low.
After I was discharged last week, feeling OK but maybe not tip-top, I spent a couple of days trying to get some rest and re-energise ready for the next chemo round. Since that's pretty much life these days. By the Sunday I thought I was on the mend, albeit still feeling a bit weak, and struggling to retain my appetite. An indicator that something was amiss came during Sunday dinner (as always, roast something with all the trimmings), when I gagged and was almost sick during the meal. Another, more significant, indicator things were not right was the fact I could only put away 3 roast potatoes, when generally I can inhale those like a whale shark takes in plankton. Still, I thought, get some rest and all will be good.
After a troubled night of sleep, I rose on Monday in the 2nd of the states covered by my rudimentary medical knowledge: right and not-right. I felt weak, tired and just bleh. Even after all that has happened to me, I still am not good about chasing down medical help when needed, so it required prodding from my wife to give the cancer helpline a call and seek guidance. I had gone as far as taking my temperature and it hadn't breached the key marker of 38C. I spoke to the lovely oncology nurse I had met during my stay in hospital the previous week, and attempted to describe what was wrong (something I am really poor at). Based on our conversation, she suggested some over the counter acid reflux medicine to see if that dealt with the gagging. So, based on that information, I packed my wife off to the local chemist, and on her return felt confident this would knock it on the head. Yeah, well done, you misguided idiot...
I attempted to get some work done, but I was kidding myself. I couldn't really concentrate and sat in my office chair feeling shite. So I messaged my boss, updated him on the joys of my situation and took myself back off to bed. I rose to get some lunch, but still struggled to want to eat anything, and by tea time I was worse still. If gagging during Sunday's meal was a trial run, I clearly had passed that test with flying colours since I made it over the line on Monday. (Warning, you are entering a Too-Much-Info point) I ran out of the dining room and needed to make a split-second decision: could I make it to the kitchen sink? Nope. Could I make it up the flight of stairs to the bathroom? Not a cat in hell's chance. Back door open, I took option 3, got a single pace outside and hurled over the outside path. Not ideal, but a better result than 2 paces earlier might have returned. I am sure nothing makes a cook feel better than having someone vomit mid-meal... I did mange to get some jelly to stay down though. After that, I curled up on the sofa and waited for bed time.
During the past 36 hours or so, my urine had been turning some rather odd shades of orange. I had put it down to simple dehydration, in what would prove to be another wrong call by me. One note on my nighttime bathroom etiquette: following the old rhyme of "if it's yellow, let it mellow, if it's brown, flush it down" I tend to not flush in the night unless needed, just to avoid waking people needlessly. The follow-on is that another person can draw the short straw and see first hand what is going wrong with my body. My wife drew that straw and came to the conclusion we were back to the jaundice days of earlier this year. Tuesday morning I woke to a new low bar in the ongoing game of "just how shit can I feel?" My wife commented that my eyes were starting to look yellow. I disagreed (more on that later). And after an episode of chills I realised it was time to check my temperature again. 38.9C. The trigger point was breached, and so another call to the helpline and, for the 2nd time in a week, their sepsis protocols were invoked and I was instructed to get to the hospital ASAP.
This time, more at my wife's prodding I even packed a bag with pyjamas, slippers and a wash kit. I got changed, and brushed my teeth in a most shambolic manner, leaving toothpaste residue everywhere (more on that later), and we headed back to the hospital. By now I felt a complete wreck, and just slumped in the passenger seat. I was also feeling mentally in pieces and chatting on the drive in, noted just how worried I was. My wife commented that I even smelled ill. I am not sure what particular smell "ill" is, but I can't imagine Dior are going to be bottling and selling it anytime soon.
We arrived, parked up, and I called the ward like last time. One of the staff came out to collect me and walked me back in to the familiar territory of the same ward. The chap said to sit in the chair and wait. Sod that, I got straight into my pyjamas and straight into bed. The same procedures were executed swiftly, bloods, stats, covid and MRSA swabs, IV line of Tazocin. And then, after a moment to breathe, an ECG and a chest X-ray. The ECG produced an odd result so they had to repeat (thankfully they left all those stickies on, so I didn't have to face a 2nd waxing experience). The doctor advised that based on the results they had to rule out I had not had a minor heart attack. Heart attack? Great, a new one to add to this journey. I then had the joy of a serious grown-up conversation with the doctor concerning my advanced directive of treatment. Essentially, if I DID have a heart attack, they would not resuscitate me and that would be game over. I can't complain, I signed the document, but it is still a shock to the system when you find yourself having such a conversation with a complete stranger. To give her full credit, the doctor handled it in a clear yet compassionate manner. It's not like she just tossed it in as an aside in a chat about the weather. Still, analysis concluded I hadn't actually had a heart attack, so add that to the not-covid diagnosis and we're starting to narrow things down.
The doctor commented that it appeared I had oral thrush, so prescribed a mouth-drop treatment for that. It later dawned on me that it was actually a mess of congealed Colgate, but in the interests of not rocking the boat, it was easier to just use the drops. She also commented that my eyes were starting to yellow. I mentioned the Geoffrey Wheeler difference of opinion, to which she simply replied "of course your wife was right."
However, the early signs of jaundice gave the clinical team a focus. It was possible there was an issue with the stent inserted earlier this year. The plan was to have an ultrasound 1st thing next morning and based on the results, there was the possibility of another endoscopy to remedy the issue. The rest of the night was spent trying to get some much needed sleep and being intermittently jacked on Tazocin. Unlike last visit, when I think I was administered a single bag, they were throwing the stuff at me like confetti at a wedding. I didn't think about it at the time, but it was a sign that this was a serious one.
Morning came and doctors rounds advised that the plan was still ultrasound and, assuming space on the list, endoscopy. At 9.30 I was taken in for my 8.30 ultrasound appointment. The technician performing the procedure was either 1) delighted to have someone take an interest in what was going on, and happily answered questions and narrated throughout or 2) incredibly professional in dealing with an irritating know-it-all asking all sorts of stupid questions. I genuinely enjoyed the ultrasound. It is amazing to watch, even if, at times, I might have been watching footage of the moon's surface for all I could interpret from the screen. The only negative was I didn't get to find out if it's a boy or a girl.
After that I was expecting to be wheeled back to the ward and await a decision on the endoscopy, however I was taken directly to the endoscopy department without passing Go or collecting £200. After a brief wait I met the endoscopic consultant who briefed me on the plan. Well, when I say plan, it seemed to be on a Baldrick level of cunningness. First off, he was hopeful, but not certain, I would get seen that day (Friday was the Plan B), it depended on whether his colleague got through another procedure in time and, I guess, they had a chance to quickly wipe down the endoscope with a cloth. Secondly, he couldn't be certain what he would end up doing. He confessed to being an attention to detail sort of person, which I would argue is no bad thing in someone who is preparing to push medical equipment down your throat, but noted that until he got the camera inside he wasn't sure what the procedure was going to entail: new stent, permanent replacement stent, temporary replacement stent, simple clean of the existing stent, or as he put it, doing a full Dynorod clean. He also went through the consent form that needed signing. Readers may remember this from last time. One of the side effects of endoscopic prodding around the biliary duct is the risk of pancreatitis. The pancreas appears to be the drama queen of the organ family, any minor aggravation and you run the risk of it going into a full meltdown, resulting in pancreatitis. The condition is not treatable, and can manifest at any point on a spectrum of "ooh, that's a bit sore" to dying. Agreeing to an endoscope strikes me as the medical equivalent of playing Russian roulette. Still, I signed the form and waited.
After a short period of time I was told it was a go and was wheeled down to the waiting room next to the theatre. Waiting room glorifies it somewhat, it's a walk-in cupboard where the X-ray lead jackets and broken chairs are stored. Then I was taken into theatre, put on the slab face down, and fitted with the mouth spreader and given a dose of fentanyl as the sedative. All the medical staff were in full gowns, X-ray lead overalls, masks and face visors. I couldn't really tell who was who, but had to just assume I was surrounded by actual, and appropriately qualified, medical professionals. It actually had a feel of being on the set of an early James Bond movie, in a scene where all the scientists are staring at dials at Blofeld's HQ.
And so the joy began, here's a camera, please swallow it. Trying to ingest such a piece of kit is no pleasant job, but once it's in, that really is the hard bit done, and just relax and enjoy the fentanyl. During the procedure there was a woman sat at head end of the slab. I have no idea what her primary function was, but throughout she held my hand and stroked my hair and generally reassured me. Through all her PPE there is no way on earth I would ever recognise her again, but for that period of time she was, to me, the kindest and most lovely person on the planet. And with that, we were finished. The consultant explained to me what he had done, I nodded and garbled in my fentanyl-induced haze, but it was later confirmed that a new stent had been put in, and a mass of pus and Christ-knows-what-else was cleaned out of the existing stent. It seemed that this, indeed, was the root cause of the problem. Now the biliary duct was flowing normally again, and things should turn around.
Around this time I was then moved to a new ward, the gastroenterology speciality one. This would give the gastro clinical staff a chance to properly monitor my progress. It was a move from a shielded private room on the covid admissions ward into a shared mixed ward. But the bed next to me remained unoccupied and the chap across from me was out of spitting distance. The doctors came over to see me to confirm again what had happened and also advised that their lab had been able to grow a positive bacterium sample from my blood culture. I glowed with pride at this point, and gave them my permission to name it after me in their research paper. The incredulous look on their faces suggested I had jumped the gun somewhat. It was later explained to me the significance of this lab result: the fact it grew from my blood, as opposed to being cultured from the gunk cleaned out of me, indicated that my own blood was poisoned, which you don't need to have medical training to know is not a good thing. That ramped up the severity of my condition somewhat. It did conjure an image of my blood being in a similar state to Lemmy's when he died. I was also told I would stay in another night for observation but was booked in for a CT scan the following morning (Thursday) to check on the stent job and also to look at the overall progression of my disease.
Thursday came around, and it brought a visit from the oncology nurse. She asked how things were going, which elicited a hell of a wobble as a reply, so much so she drew the curtain around the bed in case of me full-on losing it. She said she was contemplating moving me to a room on the cancer ward, on the basis that it was a shielded room and the oncology team would be on hand. I did say I felt comfortable on the existing ward, but certainly I wouldn't resist any decision the doctors made. I was keen to stay on the ward, at least until early evening, since unlike the full shielded ones, visitors were permitted on an appointment basis, and my wife had booked to come in early afternoon. The nurse did go and check with the gastro team, and returned to say that, for now, she was happy to leave me in my current location. The doctors came through again and advised that if my progress stayed on track, they were looking to discharge me on the Friday. I made the mistake of betting the farm on this. Early afternoon my wife came in for an hour. It was wonderful to see her after a fairly gruelling 2 days of misery.
Later that afternoon I was wheeled off to imaging for my CT scan, including the old favourite of the feeling of peeing yourself from the marking agent. I was taken back to the ward, and got a visit from one of the doctors to let me know they were pulling together my discharge papers for the next day. Brilliant. I had dinner and laid back and readied myself for one last night on the ward. Every 4 hours someone comes around to take blood pressure, temperature and pulse, and I thought the 9pm check was going to be routine. It was not to be. My temperature showed 39.2C, indicating the infection was still lingering. I immediately knew what this meant: I wasn't going home tomorrow. I had mentally set myself up for being discharged, and to have it snatched away was gut-wrenching. I messaged my wife to tell her. The ward was in darkness by now, and the other patients were all asleep. I was sat on the edge of my bed, staring out the window, and feeling as emotionally and mentally low as I ever recall feeling in my life, lower even than getting the original diagnosis. I barely slept the rest of the night. I knew I couldn't call my wife since speaking to her would trigger an absolute meltdown, and no doubt wake my sleeping neighbours. In a bizarre twist, this temperature spike would prove to be the best thing that could have happened to me.
Friday morning arrived and I was still feeling in a dark place. The doctors came on morning rounds. The consultant asked how I was doing. I was totally spent and told her that I just wanted to go home. She apologised for being the bearer of bad news, but noted that a discharge today would be out of the question. Despite my wish to think otherwise, a temperature of 39.2 was indicative of an ongoing infection, not being wrapped up in one too many blankets. She advised that the plan now was to add a 2nd antibiotic into the mix, Vancomycin, to combat whatever was still raging inside me. Subsequent Googling indicated that Vancomycin is basically the antibiotic of last resort, generally reserved for a select number of heavy-duty infections. Basically, if they were dragging this out of the pharmacy, things were serious. The consultant did note that with the spacing of IV deliveries (Tazocin down to 3 times a day, and Vancomycin twice a day), I would be permitted to go outside and leave the hospital in between. She confirmed that this could include getting home for a few hours a day. This was a game changer for me. Whilst my wish was to be home for good, as a compromise I could handle being kept in, if it meant I got some time at home, with my wife, family and the dogs.
After the doctors went away, I called my wife to update her, and to make a plan for my 1st stint on day-release as some sort of low risk offender. The 2 packs of antibiotics have a total delivery time of 3 hours via an IV hook up. Based on when they started I was looking at being home for 3pm ish. As such I called my sister and concocted a story to get her down. The reason we wanted her to visit was because we had finally managed to get the last dog over from Cayman, the one her and her partner were going to adopt. Based on the pack of lies we had told them, they were expecting to drive to Heathrow the following day to collect her, but we had already picked her up as a surprise, so today was our last chance (earlier plans having been scuppered by the obvious). It all worked well. She came down. My wife released the dogs to the garden, under the pretence of seeing how ours would greet me. Eventually the penny dropped and she realised there was a 3rd one scampering about. After my sister left, I had a lovely couple of hours snoozing on the sofa with a dog at my side, and then had a home cooked tea with my wife and mother-in-law. I returned to the hospital refreshed and feeling way more positive.
When the doctors did rounds on Saturday morning, my mental state was chalk and cheese compared to Friday. The time at home made it all different. They updated me on the plan, which was to give IV antibiotics for a few more days, meaning a few more days in the hospital, and then switch to oral antibiotics, which itself would require 24 hours of observation. Basically, I was stuck in for a while longer. I got out that afternoon, and arranged with a friend to come over and socially distance in the garden for a couple of hours. Then I crashed with the dogs before heading back in.
In the absence of any tests, the days started to follow a set routine: meals at regular hours in the hospital, doctors' rounds, day release time back at home. It was clear how easy it might be to become institutionalised. The only variation on Sunday was that the doctors didn't do rounds. By Monday I was going stir crazy, and was keen to find out the switch on medication was going to be made, since that was basically the bell, indicating the last lap. On Monday rounds I got the news I was hoping for: they were switching me that afternoon, and the countdown clock was ticking. I got home for what I hoped was the last day release. I sat in the MIL's garden, read the paper, got some proper fresh air for the first time in ages. My day release trips straddle the evening shift change on the ward. I always felt bad for the nurse and HCA taking over the night shift since they must have some concern they have lost a patient, until I wander back in.
The concern I had now was that any temperature spike was going to scupper plans to get out. Observations are taken every 4 hours through to about 10pm, and then from 6am onwards. They might do them at night too, but if so, they are very good about never waking me. Each time the check was done I was obsessively asking for the temperature, thankfully it stayed below 37 each time. Each check was another hurdle crossed. I had a reasonable night's sleep, and awoke on Tuesday with hope this particular week was going to be put to bed. Just as I was expecting rounds, chaos erupted with the patient in the bed across from me (an old boy who looked very frail, and had been through the wringer in recent days). It appeared that he had crashed, and all of a sudden his bed area was swarming with every doctor and nurse on the ward, the crash cart came out, and I think they were just about to clear and fire away when they managed to get him back. It was the first time I had seen anything like that at close hand, and the professionalism was impressive. After that panic, rounds recommenced, and the doctor basically opened with "we're getting you home today". I couldn't have felt more relieved. I called my wife to have her come in and collect me, and just waited for the discharge letter to be printed off, and to get my take-away medicines. As I left I thanked each of the staff I could.
And so quite possibly the worst week of my life ended. Thanks to the NHS I was in a much better shape that the previous Tuesday. A week ago I had no idea as to just how unwell I was, but clearly this was a doozy. And back into scratched record mode, it is just another example of why I am so dearly grateful for the NHS. I lost count of the number of staff who were involved in my care, from doctors, nurses, HCAs, porters, ancillary staff, cleaners, etc. They all did their part, in one way or another. And they were all stars.
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