I had intended for this to be a weekly blog detailing my recovery, but the unpredictability of being neutropenic put play to that. There is a very fine line between, “I’m doing grand…” and “Eh, temp is up.. time to go to A&E” – 1.5 degrees Celsius.
Friday 4th August
Waking up in my own bed for the first time in over a week, without having nurses wake you to attach you to a drip, without nurses lying through their teeth saying “sharp scratch” as they take blood for daily tests, and yes, I’ve discussed this phrase with several, I’m sure they’ve heard it all before, but “little prick” is probably a bit on the rude side. A long shower, making my own breakfast, Pact coffee (although with my dodgy taste buds, not fully appreciating the specialists blends), then… fire up the computer, see what work has in store. I’d not officially returned but wanted to do that “sort the inbox” thing that approximately 50% of productivity managers say not to do, and the other 50% say you should do. Pretty much uneventful day chilling and resting.
Saturday 5th August
Saturday 5th of August had been a date in our calendar for many months. It was a good friends birthday barbecue, in Matlock, Derbyshire. Originally, prior to my illness we’d intended to book into a B&B in Matlock for the Saturday night and make a grand knees up day out. I have been determined since my illness diagnosis not to change any plans if this was feasible. Tweaks and adjustments have to be accepted, so we kept our decision to travel until last minute, Saturday morning. We’d cancelled the B&B as MrsQ had some gigs come in for the Sunday 6th. We drove to Matlock (with my green juice to drink en-route) stopping off in supermarket just before arriving at chums house to pick up oven cook food for me. Not that I doubted their cooking but not worth taking unnecessary risks. It was great to get out in the sunshine and fresh air in Derbyshire and catch up with all the gang who have been following my progress.
It was first outing of my “white blood cell” t-shirt, which actually looks like I’ve been lying face down in a pizza, anyway, I think it’s cool. I still have to visit all those pubs in Matlock I keep hearing about. Next year! I drove first hour on return leg to give MrsQ a break.
Sunday 6th August – Friday 11th August
The 6th August (this year) was my parents 47th Wedding Anniversary. So after getting the required congratulation messages and phone calls done, Sunday was pretty chill out day, especially after the big trip yesterday. As a reminder, usual rules still applied, checking my own temperature periodically, taking my daily medication. Things were settling down to home routine again after spell in hospital. Today, I also finally got around to putting my trumpets out of sight. They were taunting me, complaining about their neglect, no doubt when I do pick them up again they’ll get their revenge with all manner of split notes and intonation issues. They know, telling you… they know. I did start tinkling the ivories (well plastic) keys on our Yamaha clavinova, determined to learn piano during my “silent period”. Bit ambitious to dive straight into Grade 1 material, so I ordered a method book on my Sister’s (who is piano teacher) recommendation.
Having had over a week of hospital food (and thinking at this point, I’d never have it again…) it was so great to get back into cooking, which is one of my passions. MrsQ was away Sunday at gig, so I had free reign to have what I wanted. It’s not that the hospital food is bad as such, I think, when it is “first cooked” it would be quite appetising, but it has to come from where it is cooked, to the ward where it is served, via some kind of steaming process which seems to blitz the life out of many of the dishes. I’ve deducted that the pasta dishes, sausage & mash, cottage pie, lamb hotpot and the chicken curry survive this process relatively well. For pudding you can have any manner of “sponge pudding” with “custard”, we didn’t have school meals in Ireland, but they have that kind of appeal, you know they aren’t the best, probably powder based custard (which is explosive) they are so bad, they are good. Anyway, a DQ tangent, I made this tasty dish for my lunch on Sunday.
On Monday I had my weekly blood test back at Barnet Hospital. I drove myself there, asserting my independence. Mark, the clinic nurse glanced me a knowing look, “Feeling better David?”, me, “Yes, lots thanks…” I’m not sure exactly what I was expecting from my results, but Neutrophils still zero, so I had to be signed off by consultant to leave. Under “normal” circumstances, nurses would probably pin you down to keep you in the clinic in this state, but as the illness and the treatment result in “low” neutrophils, you are allowed out, but under strict instruction to monitor your temperatures periodically and act as previously instructed. I returned home and logged in to work computer to catch up and take on some work. I was scheduled 3 man weeks work to be completed by the end of the day (ha, joking, it was only 2). For the rest of the week, it was pretty much routine, nothing out of the ordinary. I did have an amusing conference call at work, where the people with the information were Spanish, but spoke no English. I could only hear the Spanish speakers, not my colleagues, one who was translating. It was very Monty Python … “My hovercraft is full of eels…..” sketch…
Friday was special…. 1 week after Chemo, hurrah…. time to celebrate a little. Well, yes until I started to feel a bit queazy, and shivery in the afternoon… so checked Temp, but it wasn’t high. I took a break and had a lie down for a bit, but things didn’t improve, I was still a bit shivery (like you’ve got flu type symptoms) but still didn’t have fever. After an hour or so my temperature did start to rise, but wasn’t over the critical 38 degrees. I phoned clinic for advice, and was instructed not to take any additional medication (e.g. paracetamol) and increase frequency of temperature testing. Sure enough, after an hour temp was approaching 37.7 which was the cut off to leave the house and book in to A&E.
Friday evening (we arrived in about 6pm) in A&E was certainly an experience. MrsQ dropped me off (and then went to park car) and I went in and registered, explaining story etc. I was triaged and seen by nurse after about 30 minute wait, where I had blood taken for tests, given medication for the fever and a cannula fitted. During the procedure with the nurse, I’m sure I heard on the tannoy “Dr Murder to the front desk” ( or where ever), but it turns out it was Dr Murdan (or, not MURDER at least!). After a short spell back out in the waiting room, I was called in to be seen by the doctors. I guess I’d been in A&E about an hour by then, so this was good. I was given antibiotics in IV and told I would be kept in. It takes about 30 minutes for the dose of antibiotics to drip in, then, a nurse turned up “Ah, you are chemo-guy” … with 1 litre of saline to be administered by IV. 1 litre… took nearly 4 hours, and it really does make you want to whazz too! I was then seen by the doctor who said my neutrophils were low, I had sepsis again and would be admitted. I asked my neutrophils number, 0.2 doctor answered, who then was amused by my fist pump celebration. Well, they were zero 4 days ago, things are working, things are recovering, anything positive, step by step! I was moved to another room and eventually picked up and taken for another chest x-ray. I had more IV antibiotics and litres of saline into the early hours of Saturday morning, eventually being seen again by consultant and doctor (they hunt in pairs, remember) at about 6am Saturday morning. At 7:30 am or so, I was wheeled back up to the Mulberry ward, where I would spend the next 6 days.
Routine at Mulberry ward pretty much as before, blood test, IV antibiotics, IV saline (they stopped on Sunday I think). By Tuesday, things were starting to improve fever-wise, but I was having sharp pains in my chest at the top of my breath (the point just between the inhale and exhale… singers & brass players are very aware of this point.. like the bite point on a clutch!). When I say pain, think shards of glass loose in your lung. This confirmed what was found on x-ray that in that they’d spotted shadow on my left lung. It would be the left lung.. just to give you extra panic, requiring the nurse to check with ECG. I was prescribed additional different antibiotics orally, in addition to my IV antibiotic (which, I don’t think I’ve mentioned yet, described by one doctor as “bleach” and several nursers as “being nuked” … gee… thanks, reassuring), and also, thankfully painkillers. My right eye started to irritate me too, so I was prescribed a “lubricant” called “Optive Fusion” – you couldn’t make it up. I just hoped it didn’t do what it said on the box. If they eye didn’t improve enough I’d have to take a trip to the Ophthalmology department for tests.
It didn’t improve enough, so a trip to the Ophthalmology was arranged on Wednesday, however, there was a pediatrics clinic that day so the place was crawling with kids so I had to mask up.
It was quite amusing wandering through the hospital with mask, following the consultant and junior doctor until I was handed over to the next department. I was asked to wait in a room until the optician came to see me. Standard eye test first, then detailed exam, then some fun… drops to dilate pupils (you can kind of see i the picture) and further tests. The good news is there was no issue in the eye, or at the back of the eye, so could be treated with some drops.
I was beginning to think I was falling apart one organ at a time, but obviously exaggerating.
By Thursday the fever was under control, pain in lung (pneumonia) now more dull than shards of glass, and eye improving with the drops. There was a rumour I was being discharged. I wasn’t told directly but all meds I had in the room that I was administering (drops) were taken, they chose not to redress my bed etc. Eventually, many doctors and consultants turned up with the good news. I was being discharged, they would sort my papers for pharmacy to ensure I was leaving with appropriate meds. This took a while. I also had to have my cannula removed. By now, I’d had the original right arm cannula removed and had new one in left arm. The IV themselves are not the issue, as the drip flow is pretty slow. What causes the sting, pain and soreness is when nurses flushing the cannula with saline from syringe before and after connecting a drip. Slower depression of the syringe is much more preferable. When I eventually left at about 6pm Thursday, I had proper junkie arms, left and right. It was so good to get home to a long hot shower, and a nights sleep in my own bed.
Friday 18th August
The simple pleasure of cooking my own breakfast today was absolutely delightful. Omelette with emmenthal cheese washed down with freshly brewed Pact coffee. I didn’t return to work, but did check in online and say Hi and did catch up with my boss. All good. I also started (after disinfecting the keyboard!) into Carol Barratt’s “The Classic Piano Course” method book as recommended. I also took it a lot easier in general than I did after my last stretch in hospital. I could do without another visit, even just to spare my arms the trauma of cannula.
I’d been dreaming about my first meal after release since I spotted an Instagram by Jamie Oliver. It was a rump steak recipe from his new book, but he’d not published the full ingredients, so I had to guess (the concept of his new book is 5 ingredients). My version was the steak, with haricot beans, stock, mushroom, garlic and seasoned with some cheeky mustard. Close enough, should have been cannelinni beans, and the cheeky seasoning was red wine vinegar. Ah well, I have two versions to choose from next time. MrsQ was happy to have me back in control of the stove again.
Also, 2 weeks since completing Chemo… fever down, side illnesses / conditions under control. We’re moving forward, small step by small step. How do you eat an elephant? One bite at a time….
Saturday 19th August
Mmm, eggs on toast, coffee. Chill. Then, finally, a walk in the fresh air (well, as fresh as we get in these parts of London, which is pretty fresh… never measured it, anecdotal…. but we’re not far from countryside)
I’m looking forward to very uneventful (from calamity health conditions perspective) few weeks. I have plans, places to go, people to see, fun to be had.
Laters folks, again, thank you all for your words, cards, posts, tweets, sms messages, emails, slack messages, skype messages of support. You are all marvellous. Again, I can’t thank the staff (including Dr Murder) from Barnet Hospital Mulberry ward enough for the care and treatment I received. I’m looking forward to going back with Christmas gift for them, but I’m hoping not to see them before that!