Thursday 10th January 2019
“There is nothing like staying at home for real comfort” — Jane Austen

Dave left the ward yesterday about 5pm, Matt left a few hours later, and John and I watched / listened to City thump Burton 9-0. Jayne arrived about 9.45pm, I had about 20 mins left with Bob pumping me full of fluids 🙂 Andy the nurse was bang on time when Bob beeped for the last time, he unhooked me and took the cannula out, then I was free to wrap up warm for the journey home after nearly 3 full days in my PJ’s.

Jayne’s arrival was great, I missed that smile and positivity she always seems to have to hand. Bags packed, we wished John well, and I said goodbye to the place for now. I’d hardly moved from my bed on Weds so I didn’t know what to expect, but it was an easy walk to the car and a simple drive home. I weighed myself before bed and I was about 3 to 4kg heavier than on Monday before treatment, and I honestly felt wobbly going up the stairs carrying so much fluid. Wobbly like jiggly, as opposed to unsteady on my feet.

I slept like a log ! Just the 2 night time toilet trips, all the easier without Bob. The kids woke me up at 7.30am for a hug which was lovely, although I could have slept a lot longer, it was worth it 🙂 Parker, who is terrible at keeping secrets, told me I needed to go downstairs because there was a “surprise.” It was a lovely care package, with a back massager, biscuits, sweets, superfood, carb bars, new slippers and comfy clothes etc. Very thoughtful Mrs E !

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So how do I feel ? Still pretty normal to be honest. I was very tired this morning because of the sleep I missed out on in hospital. I napped from about 11am to around 2pm, which sorted that right out. Twice during my nap there was a delivery driver knocking, so I flew downstairs without thinking to open the door each time and back up to bed. My heart rate was up more than it usually would be, with that sensation of hearing your heart beat in your ear for about 5 minutes, which I guess is a sign of things to come. Energy levels and appetite are still ok, although something tells me I wouldn’t cope with a gentle jog, not that I’ll be trying. I’ll tackle a short walk tomorrow.

After yet more toilet trips, my wedding ring is back to slipping neatly over my finger, the bloating is nearly gone. The only other thing at this point is taste. I made fish and chips for me and the boys for tea, and while ketchup is usually quite tasty and sharply flavoured, it tasted really watered down. Taste is one of the things that can change through the treatment and it seems to have started.

I have a few days worth of steroids and anti-nausea tablets to take, a mini-pharmacy to contend with, but not once have I felt sick. They are doing their job well.

We’re also ready for visitors. Firstly, Jayne will be medically screening people at the front door. If you are ill you will be turned away ! This is in preparation for my blood count and therefore immune system bottoming out over the coming days, a simple bug can be very dangerous and land me back in hospital. If you pass the entry procedure, then you’ll be de-bugged with the alcohol gel on offer as you enter. There’s also a thermometer in case I start feeling ropey, and some sweets in case the taste thing gets worse.

I’m still waiting for that “whoa, so that’s what chemo is all about” type moment, and I’m not going to complain if it takes it’s time to creep up, but I’ve no doubt it will. I just need to be ready for it, which I am.

I’ll end on a quick thank you for all of the support, messages, facebook / workplace comments, blog comments, WhatsApp messages, messenger chat’s and even video calls… etc so far. Part of this challenge will be a mental one, and so far I’ve still got all of my marbles intact. The support doesn’t go unnoticed and is hugely welcome. Lots of people say they’d like to help in some way. A quick chat every now and then, or a comment to read on one of these many platforms is a welcome boost. I’ll be sure to return the favour somehow in the future 🙂

Wednesday 9th January 2019
“I’m tired, but proud.” — Norman Rockwell

Last night I went with the tactic that worked somewhat on night 1. Stay up late, until the eyes want to close, then I’ll get a good sleep. Wrong ! I stayed up just past midnight, then put my screens away and tried to sleep, however at this point I’ve been pumped so full of fluid I feel like the Michelin Man and I still have a litre and a half of fluid to go in. My wedding ring which usually slips over my knuckle quite easily, won’t budge. Try as I might, it gets to 1.45am, time for the salts bottle to be put on for 4 hours, and I’m still awake. John is in a bit of pain tonight, he’s struggling and it’s a little worrying. I helped him out with some minor things, the least I could do. Multiple bathroom trips too of course !

So I fired up the laptop, watched the next instalment of the long-running USA drama, where Mr President talks awkwardly from a teleprompter, then the democrats blame him, then watched an equal mix of CNN and Fox (Hannity the fear monger!) to see what was being said. All seemed pointless. Tried to sleep again at 3am, still no joy. Talked with John til about 4am, and then finally dropped off. Up at 7.45 am, and I don’t dare post the selfie that I took, although that was just lack of sleep. But still no noticeable Chemo side effects. After filling a few more cardboard pee cups, I’m feeling less Michelin now.

The nurse said because my chemo was super late yesterday, they can’t start todays until about 5pm, which would see me ready to leave here about 10pm. Not ideal. Yesterday the Dr was cool with them starting the chemo earlier, despite the 5pm start on Monday (although it then turned up way late). Hopefully he’ll say the same today. My temp, blood pressure, heart rate etc has all been fine along and continues to be, so I hope so. Breakfast, showered and changed, awaiting the Dr’s rounds… Leek & Potato soup, then Roast Pork and veg, then Crumble and Custard to look forward to at lunch time, while my appetite remains.

1pm – I’m told they can bring it forward, but it’s now 9 hours, i.e. 4 hours of fluid, then 1 hour of etopiside (the only remaining chemo) then 4 more hours of fluid ?!?! Challenged this with the nurse and Dr, and at 2.30pm I still don’t have an answer and haven’t started anything. Tad annoying. Looking like it could be another overnighter…

4pm – Still no idea whats going on. Nothing started.

5.30pm – Well, back to the original plan. Starting now with 1 hour of Etoposide, then 4 hours of fluids. Jayne can come and pick me up, I should be out for about 10pm and sleeping in my own bed tonight !

So to recap, I had – Monday, 1 litre of Etoposide over an hour, 1 litre of Cisplatin over 2 hours, another 1 litre of Cisplatin over 2 hours, and 1 litre of salt/electrolyte water over 4 hours. 4 litres in total, plus 2 to 3 litres of water drunk. Tuesday – 500ml of Bleomycin over an hour, 1 litre of Etoposide over an hour, 1 litre of Cisplatin over 2 hours, another 1 litre of Cisplatin over 2 hours, and 1 litre of salt/electrolyte water over 4 hours. 4.5 litres in total, plus 2 to 3 litres of water drunk. Wednesday, 1 litre of Etoposide over an hour, 1 litre of salt/electrolyte water over 4 hours. Plus 2 litres of water. I make that about 17.5 litres over 3 days ! No wonder I was peeing so much.

Dave and Matt are well enough to go home today too, so John will be on his own. He is hoping to get moved to a posher ward tomorrow while he recovers, he’ll be here a while yet. I really hope he gets well soon and off home to his family.

I got a visit from my assigned nurse today, she’s called Cath and is with me on the whole journey. She’s not surprised that I still feel relatively well, but explains that over the next few days at home it will really start to hit me noticeably. I’m back to see the Dr next Friday morning, blood tests etc to see how my immune system is reacting. Then get a 30 min blast of Bleomycin early afternoon as an outpatient. Until then it will be interesting to see how it unfolds. You’d have thought the worst bit would be having it coursing through your veins, but I guess it lingers and takes its time to do it’s job.

3 odd hours to pass until home time, reluctant to snooze or I won’t sleep later. I just polished off another 3 course meal of soup, chicken casserole and chips, and lemon meringue pie. Very much looking forward to seeing Jayne, then the kids when I get home although they will be asleep (and therefore not fighting!) The next chapter awaits… Day 4 ! 3 days down, 60 to go…

Finally, taxi for Evans !

Tuesday 8th January 2019
“I didn’t want to fall into the trap of complacency.” — Taj Mahal

Day 1 PM – So going back to last night, lots of folks took the time to read my blog, and the facebook post that Jayne posted, and I spent ages looking and replying to comments which is a welcome distraction and show of support from people. For the first time since being diagnosed, I had a tear in my eye (thanks Jayne!), which was equal parts of the emotion brought by my surroundings, an inconveniently timed sad song and reading her post about me being brave. Some people chatted to me across WhatsApp/Messenger etc, and I had my group of guys in here to talk to. Time flew…

To recap, I had 1x 1 hour Etoposide, and 2x 2 hour Cisplatin IV’s, with a 4 hour electrolyte drip on for 4 hours overnight. Other than phantom tingly fingertips briefly, and a slight feeling of wooziness, it was all normal. Although I fully expected to wake up feeling terrible once it all kicked in.

Stayed up chatting til midnight, went for (another) pee dragging Bob (the IV stand/pump) with me, then dozed awkwardly on the bed with music. Woke up about 2pm, checked Bob to see how much was left, and he was dead ! Out of battery ! I’d forgot to plug him in… so I call the nurse, plug it in, and she gets it going. Then its blood pressure check time for the other chaps in the room, all the time Bob keeps beeping because something isn’t right. She clears my Cannula with saline and it’s working. But I’m awake… and I am until 3.30am. Then I doze off again, half enter consciousness a couple of times for the few-hourly blood pressure measurements, but well away with counting sheep.

The next I know it’s 8.15am and there’s a nurse waking me up to take a breakfast order. Walloped that down, no loss of appetite yet. Video called the family, miss them a bit ! I honestly expected to feel awful, and expected walking to the loo (not with Bob for a change as we were disconnected at some point in the early hours) to be an effort. Nothing though yet. Still feeling pretty normal ! But, not too complacent just yet.

So I’ve had a shower, got changed and expect my next chemo drugs at 10.30am ish. Until then, I’ve got free run of the place. Matt next-door isn’t well, he was hoping to go home today so I guess he’s stuck here a bit longer 😦 John swallowed a plastic cannula cap in the night thinking it was a pill in the dark, we joked about how sweetcorn makes it through ok therefore so should that ! The mornings light entertainment 🙂 Headphones and tech this morning, to block out snoring from the 4th bed !

4pm – So it would seem the factory nearby that produces the Chemo bags (to order) has a broken machine and no chemo drugs have arrived on the ward for anyone today. So since I woke at 8.15am, I’ve had no treatment, and theres no update. I have no idea what this means for my cycle, guess it depends completely on when it arrives. Possibly extend into a Weds night stay, who knows.

I nipped out to Sainsburys out of sheer boredom earlier, a 15 min round trip, passed a pub and the waft of beer was unusually appealing. Dave in bed 4 has a cough, honey in hot water has really helped him out but the hospital has run out of honey now. I thought I’d earn some good karma and bought him a bottle. He was made up with that ! In more positive news, I’m having butterbean and bacon soup with a white roll, sweet and sour chicken with rice and mash (yes mash) and strawberry cheesecake for tea. Roll on 5pm…

6.45pm – My drugs are finally here ! Just had some pre-steroids injected, now 15 mins of salts, then the bleomycin. First time, made my heart beat a little faster when she said that. If you are here reading because you are about to go through this, I would hope you’d have finished your cocktail by now rather than just be starting it, so the effect will hit me a little later than you. Skip ahead a little (no spoilers I promise) if need be.

8pm – 1st lot of bleomycin done. No immediate symptoms. It’s handover time so just sat listening to Bob incessantly beeping for more fluids. We’ve got the Spurs-Chelsea match on, all sat around having a bit of footy banter. Just missing a few bottles of beer ! So far so good still.

1 hour of Etoposide loaded in. Then 2 hours of Cisplatin, twice. Then 4 hours of electrolyte fluid again. And probably 5 or more trips to the bathroom with Bob… Feels like a good time to sign off. Expecting again to wake up feeling like I’ve been hit by that bus, which has so far been late ! It’s been a fun day 🙂

Monday 7th January 2019
“The beginning is the most important part of the work.” — Plato

Managed to avoid the traffic chaos of the first day back after Xmas & NY for most people, with Jayne playing GPS getting us here in efficient time ! Car park was empty, wandered in and got a brew while sat feeling a bit nervous & anxious for the first time. Today is the day I both did, and didn’t want to come.

9am – As always, the staff are really friendly from reception to the nurses. A lovely chap called Clive put my cannula in, and importantly it’s in on top of my forearm, not in my hand, so it’s in a great place where it will get in the way the least. Good given it will be in for 3 days.

10am – All done with the nurses and I’ve had a chat with the Dr’s, signed the all important consent form after hearing about the side effects. Serious lung damage and heart attack being the worst possibilities, tinnitus, numbness in my fingers etc the lesser ones. A calculated risk, given the other option is that my body destroys itself ! Anyhow, long wait and lunch, then off to the ward. Enjoyed chatting with Jayne, particularly when she reminded me we’ve been together just coming up to a century and a half (she meant decades.)

1.30pm – Finally onto the ward, such a weird place – 4 folks to a small room (bay), curtains open, folks snoozing. Straight away a joke about how I’m helping the chap next to me to lower the average age in the room ! Us “youngn’s” are in the minority.

4.30pm – Still literally nothing. Await first contact with Dr / Nurse about anything chemo related since getting on the ward. We’re both a bit bored and we’ve just heard some workmen have cut through the main electricity cable to our street so there’s no power at the house ! Our friend is there and was due to pick up the boys, dinner by candlelight it would seem !

5.30pm – Etoposide and some anti sickness tablets, my first drugs. Just over a litre via IV over about 70 mins, it gives you a real funny cold sensation going into your arm. Lovely pasta bolognese and Manchester tart (dessert!) for my evening meal. Around 7pm, I got my first bag of Cisplatin (Platinum basically, my value has just increased 😉 ) So far it’s ok, I’m about an hour into a 2 hour drip right now and I’m starting to feel ever so slightly woozy in the head, like getting drunk. I’m trying to drink lots of water as I’ve been advised, but…

Pee-ing in a cardboard bottle. This is required. They monitor fluids in. They also monitor fluids out. Hence pee-ing in a cardboard bottle and leaving it on the bathroom floor for the nurses to collect and measure. This will be my norm the next few days, and with the amount of fluid going in, it will be a very frequent occurrence. I also have to wheel Bob (the IV pump) around with me when I’m hooked up.

Some good company in my room, Matt who seems a similar age to me, John is a real funny character and is a lot older. Both have/had Leukaemia, John told me he was diagnosis is very serious but he’s still got a great sense of humour. That, together with seeing bays of older folks receiving similar treatment, looking frail and vulnerable, just reminds you this is serious stuff. I almost feel a tad guilty I’m faced with a survival chance of 95%+, but that’s probably because I still feel relatively normal right now. I’m sure when I wake up tomorrow in a different state, guilt won’t be on my mind any more. If indeed I get a decent nights sleep…

Sunday 6th January 2019

“Good company in a journey makes the way seem shorter.” — Izaak Walton

So here’s my first ever attempt at a blog, my first post.  If I figure out how this all works properly, I’ll go back and add some posts around the lead up to needing Chemo, as I believe I’ll have some time on my hands !

I’m thinking this is a good way to keep friends, family and other interested parties up to date with my journey. Maybe as others have done, it will serve as pre-reading for other unlucky folks going through a similar journey.

I had a nice day today chilling out, went to Hebden Bridge with Jayne without the kids which was a nice bit of “us time” before life gets turned upside down somewhat.

I’ve done a lot of reading around what to take with me to the hospital for my 3 day stay. Nearly time to pack my bag which will amongst other things contain comfy (warm and cool) clothes, towel, toiletries, lots of blackcurrant Fisherman’s Friends, chargers / power bank for my tech, chocolate, wooly hat, slippers, dressing gown etc.  Some unusual ones in there but based on recommendations from others.

Either way, I’m expecting a rough ride, and knowing it impacts some more than others, and in a number of different ways, I’m hoping for a sense of normality throughout.  Call me naive but at this point I’m a chemo noob !  But mentally now, I just want to get stuck in…  bring it on !