Thursday 28th February 2019
“Even rats can only be kicked around for so long before they’ve had enough” — Joe Cowley

People say I have coped with this journey really well, and that’s a nice compliment that I take a lot from. I’ve dealt with it well by thinking positively, but more importantly, I cope well when I have a goal or date/times/schedules to look to, or when I am prepared for the way ahead. I like to have a good idea of what will happen, and when, then I feel in control.

I came into Cycle 3 partly cocky that I knew what was going to happen on a day by day basis, because I’ve done it 2 times already of course, and partly expecting it to be a degree worse than the last two cycles. I’d mentally prepared for it to be just a degree worse, but in reality the hit has gone up a number of levels, and it’s more prolonged. So back to my theory of coping. I feel far worse than I expecting, and it’s not gone to plan in terms of duration. That’s been a massive sucker punch this last week.

The last 2 days have continued to be physically difficult. It’s eased off a little, but I’m still getting tired too easily, mores than previous cycles. I spent nearly all day yesterday on the sofa with the exception of spending half an hour or so tinkering with a bike I’ve picked up as a gift for someone. Same today, I’ve just been sat most of the day, except for going into the shopping centre for half an hour and getting a few things done. I was too tired last night to blog again, I genuinely couldn’t be bothered picking up the laptop. I felt the same tonight but just got on with it.

Mentally it’s taken it’s toll for a range of reasons. I’ve said all along work has helped keep me busy and engaged, but I’ve not been able to get back this week despite expecting to do so at some point. It’s frustrating and annoying getting out of breath for menial things, but when it goes on 3 (possibly more yet) days longer than you were prepared for and it’s not going away, it’s depressing. Worst of all I don’t feel like I’m accomplishing anything, and whilst this isn’t about accomplishing things each day other than getting through it, it helps keep positive. Up to now I’d been doing bits and bobs along the way. My appetite is still playing up too. Food has been a source of enjoyment when my taste has been all there, but again this week it’s been the opposite to an extent.

I’m still acutely aware that others who have gone through this journey have faced far worse, full on nausea and needing to sleep more hours in the day than they are awake for example. But relative to my journey, this last 7 days has been the hardest so far and I’m a bit down about it. It’s temporary, but as I keep saying, the great thing here is that once it passes, that should be it given I’m 8 days from my last treatment. Each day it continues though, it just grinds you down a little.

I’ve not had many whinges but consider that a good old whine, including today’s quote. I’ve had enough now, but I’ll still go to bed hoping I wake up with the spring back in my step 🙂 and remember how close to the finishing line I am.

I’m off to hospital for the day tomorrow again for the penultimate chemo, 8.40am bloods, 9.40am Dr appt, 1.30pm chemo for an hour. I hope I’m lucky again and get in a few hours early for the chemo as a 4 hour wait isn’t particularly appealing, and the way I’ve been feeling this last week I’ll be sleepy about lunchtime. Usually I’d spend a good portion of that time eating or thinking where to eat !

On tomorrow’s visit I’m particularly interested to see how my bloods are, red/haemoglobin this time to see if it explains the tiring easily. Also, to ask if it was deliberate or an oversight that I didn’t get any steroids when I was discharged last week, and if that will have added to the fun this time around. In my head, there must be a reason it’s hit harder this time. It won’t help, but I’m a curious kitty.

Tuesday 26th February 2019
“The important thing is to stay positive” — Saku Koivu

There was no real respite today from the exhaustion but the day had it’s positives. It almost became “Two Nap Tuesday” but I think I’ll manage to dodge needing nap number two and go for the early night.

Much the same today in terms of how I felt. I woke about 8am, another 9 and half-ish hours sleep. I said I’d drop the kids at school so that would be a test of how I felt. There was a slight frost on the soft top of the car, so I put my bobble hat on to keep my head warm, it was cold ! I drove them the 0.3 miles to school, and the 300m walk from the car to the school door was really quite tiring. I was glad to be back at the car.

I braved nipping to the shop for a paracetamol stock up and some milk and necessities. I propped myself up with a trolley on the way around, and that helped but it was a knackering experience. No real improvement on yesterday. Back home and I just sat around in the back garden until lunchtime when I felt really quite hungry because I’d missed breakfast, going to the shop straight after the school drop off.

I’m still getting the dizziness when I stand up, although the ferocity has calmed a little. I was reading the list of symptoms from BEP again today, and I found a bit that specifically said “Do not get up too quickly, may cause fainting.” Although it’s hard to remember to get up “slowly” as you do what comes naturally. I can’t do much that requires movement or walking without sounding like an OAP, moaning and groaning and sighing through it because it’s a bloody effort. This is going on much longer than the last two cycles and doesn’t seem to be shifting. I’ve finished taking the Filgrastim injections this time around so maybe that will help.

Lunchtime came and I honestly couldn’t be bothered to cook despite having options, so I drove to the nearest fast food establishment and utilised the drive thru while I had an appetite, which has been iffy this last week. The weather was beautiful today, part of the attractiveness of buying food out was taking the car out with the roof down, it’s one of those small mental lifts on an otherwise crappy day. Certainly no bobble hat required by lunchtime, it got to about 18 degrees today ! I did consider just going for a short drive to pass some time but, yes, I couldn’t summon the physical or mental energy.

• 

I ate in the back garden, and come 1pm I was wiped out again and in need of a nap. I was almost nodding off sat on the chair, being kept company by the dog who likes sunbathing as much as the average beach goer. I got 2 very comfortable sun loungers last year and quite a few times I accidentally nodded off, so I got one out of the shed and had my afternoon nap outside today. I slept for about an hour and fifteen minutes, the sun moving behind the house woke me up because it suddenly got cold.

The kids came home and and did their reading, then we had a lasagna for tea when Jayne got home. I enjoyed mine thoroughly at the time, Luke and I had seconds, but now my stomach feels iffy yet again so I’ve taken an anti sickness tablet. I burped a bit of it up since and that’s as close to nausea as I want to get, or have been at any point. I can’t weigh up what’s going on with my appetite. Maybe I ate a little too much. Even when my stomach is iffy, I keep craving salted crisps though, and they go down well. I just have to remember to drink more afterwards.

After tea, about 7pm, I honestly could have napped again. I’m really tired. There’s no point though, as I won’t sleep later. I’ll muddle through and have an earlyish night.

There’s no end in sight to this yet, but as a couple of people have pointed out today, I can stay positive as usual because once this does lift, it’s the last low. I hope it shifts before my Friday Bleomycin shot though. I’ve never really gone into a Friday feeling unwell, although on the bright side, the Bleo shot doesn’t usually do anything noticeable. Eyes still on the prize, 10 days until my final treatment 🙂

Monday 25th February 2019
“I’m exhausted trying to stay healthy” — Steve Yzerman

Wowsers, today has just been a struggle. Yesterday wasn’t great, you’ll remember me saying. Another 9 and a half hours sleep last night, although last night I had the added bonus of 2 bouts of diahorrea at 12.30am and 4.15am which disturbed things a little.

Jayne woke me at 8am as I’d asked, but it must have been 8.30am before I managed to open my eyes and function. I got up and got dressed, let the folks at work know I wouldn’t be around and headed down for some breakfast. I managed 3 weetabix today instead of 2. Straight away, just standing up to make breakfast was a real effort and was a sign that things hadn’t improved, if anything I felt marginally worse than yesterday.

You know that feeling where you get up “too quickly,” the blood rushes to your head and you feel dizzy? That’s what it’s been like most of the day. Just walking around I seem to get a half measure of it.

So it continued. By 12pm, I wanted to go back to sleep again. The last 2 plants for my flowerbed arrived by post just after lunch, so I went and dug them in the garden, only a 5 minute job but that finished me off. I sat on the patio in the sun and was nodding off so about 2pm I went up to sleep for an hour. 2 and a bit hours later I woke up, and Parker was home with Jayne after school.

Since then, as I have for the majority of the day, I’ve just sat down and messed on my phone or watched TV. I sat with Parker and watched some kids films, and despite being hungry I couldn’t muster the energy to get up and cook anything. Luckily the doorbell went, so I got up to answer it, and although it was just a doorstep charity person who I quickly moved on, it got me up. I settled on cheese and ham toasties for ease of making.

Now its 9pm and I’m ready for my bed already. 11+ hours sleep last night and today in total, barely any physical activity, and I’m done. Ready for bed. It’s quite depressing, but I know it’s just a day or a few until I perk up again, so it’s fine. Expecting more of the same tomorrow, hoping for better.

I’m resting though. There have been times today where I considered doing something. My bike needs cleaning for example, I put it away dirty 3 weeks ago (which is criminal) and forgot (unforgivable) until I saw it in the garage over the weekend. It’s sunny, I could just nip out and clean it…. err no. Best not.

Sunday 24th February 2019
“The time you enjoy wasting is not wasted time” — Bertrand Russell

This weekend has been tough, I’ve been feeling the strain of the cumulative effect of the chemo’s. Saturday started after another long sleep, 9 1/2 hours again, which has become a regular amount. It’s a little like groundhog day, I could almost copy / paste these blogs at the moment.

I stayed in bed until around 11am, and then got up. I did the whole optimistically trying to be active in the hope it might make me feel better, and it was ok to an extent. Luke and I did some more painting and sanding outside in the sun, but not as much as the day before as a) there wasn’t as much to do and b) I wasn’t feeling it, tiring incredibly easily. We wrapped up and went inside, where I pretty much sat on my butt for the rest of the day.

All day I had a bit of a sore throat and a headache. My temperature was ok, and it didn’t get any worse. I did ring the helpline in the morning, just being cautious. They said to call 111 or go to a walk in if I was in discomfort, but were not too concerned. I couldn’t get in anywhere, nowhere nearby had any appointments, so I just soldiered on.

About 6pm, I was completely wiped out and had a nap on the sofa as usual, but unusually I slept for 2 hours pretty easily. I was still tired and lethargic when I woke up. I honestly couldn’t be bothered to pick up my laptop and write the blog, so I decided to roll Saturday and Sunday into one and write it today instead. The nap meant I wasn’t completely tired at bedtime, and I stayed up until midnight.

Like clockwork, another 9 1/2 hours later I woke up Sunday morning t 9.30am. Still a little bit of a sore throat, feeling dehydrated and generally tired. I knew from walking around to the toilet and back today would be a struggle.

Jayne and the boys were going down to the park on their bikes with the dog, and very unusually, I declined to go. I knew I wouldn’t handle it. Instead, with it being really sunny again, I decided to mow the front lawn, thinking getting the blood flowing with a bit of walking up and down might sort me out and perk me up. Unfortunately it didn’t. Usually its a 10 minute job, maximum. Today, I needed 4 rest stops where I literally sat on the floor with my head in my hands recovering. This is as bad as the “getting physically tired without actually doing a lot” has been. It makes me not want to do anything at all, which is quite defeatist for me but a reflection of current reality.

I put the lawnmower away, then just sat in the back garden in the sun until the football started. From 2pm to 6pm, I barely moved off the sofa. Jayne kindly went shopping without me, and cooked our roast beef dinner with no help, so I could rest.

I’ve struggled with food again today, 2 weetabix for breakfast, a couple of microwaved Hollands pies for lunch. Then with a gorgeous roast dinner infront of me, I managed about half of it despite my eyes wanting to eat it all and more. My stomach continues to play up, and I reached a point with my tea where I felt like I would start to feel sick if I ate any more.

After the roast dinner, straight back to the sofa to sit and write the blog. I won’t be doing much else tonight but sitting and doing not much. I haven’t had a nap today and I’m struggling a bit now. I might make it til 10pm, but I’ll be out like a light.

As much as I’ve had the physical tiredness yesterday and today, I’ve struggled mentally a fair bit too. I struggled to concentrate on the football earlier. I’ve been playing a word game on my phone and it’s seemed more difficult than usual. Part of the reason I didn’t blog last night was that I didn’t have the mental capacity to sit and write, and I’m similar today. This one won’t be the best one I’ve written, it feels a bit like a chore today. (In fact, I just proof read what I’ve written and it was riddled with errors, assuming I’ve spotted them all!)

I doubt in this state I’ll make it to the usual plan of working from home tomorrow. In cycle 1 I managed it on the Monday, in cycle 2 I managed to get back to work by the Tuesday, both seem really optimistic at this point. I’m guessing tomorrow will be another hardly budge from the sofa day. Jayne is working from home so can keep an eye on me, and I’ll just take it from there. Bar a miracle occurring overnight.

To quickly cover the list of weekend symptoms, here we go. Tinnitus, as always. Fuzzy hearing on Saturday, worse Sunday. Incredibly dry skin and lips, copious amounts of hand cream and lipsyl used as usual. Sore throat / headache, I’d say I have a very minor bug, the type that wouldn’t normally register. Taste has gone again making food less enjoyable. Tiredness, in spades. Lack of appetite continues, hasn’t bridged the gap to nausea yet but it feels like it’s come close. Heartburn, occasional and solved with Gaviscon. Finger sensitivity to hot/cold remains, still hurts a little to open a can of coke but not impossible, no worse than it has been. My nose, having recovered mostly, is back to being sore inside and bleeding most times I blow my nose. It’s quite a list now, but I’m thankful it’s a manageable list and still could be much worse. It won’t be long before hopefully I can take this list and start to cross things off as we go.

I have as you know been reluctant to simply “waste” time, as in fill time with menial things just to pass the time. This weekend I’ve not really had a choice, and I’ve accepted that it was necessary, so it hasn’t actually felt like a waste. It really helps that this is the last weekend where I should feel this crap, so passing the time feels like a means to an end at this point. 7 weeks down, 2 weeks to go…

Friday 22nd February 2019
“I am reasonably happy, providing I keep busy.” — Burt Lancaster

I had a good nights sleep from about 11am to 8.30am. I fell asleep pretty much as soon as my head hit the pillow last night ! That was a decent amount of sleep and I felt pretty ok with that. Although, there were at least 3 pee trips again, I’m drinking a lot still to make sure the bad stuff is flushed out.

I’d arranged to go and pick up some more garden bits this morning at 10am, so I headed down for some breakfast. I managed 2 weetabix, the appetite is still not so great. Jayne was working from home so I took Parker and left Luke at home, and we were out about an hour.

When we got back, I felt reasonably energetic, but still like my stomach wasn’t quite right. Not like I needed to be sick, but still like I didn’t want to eat. Parker and I enjoyed a little sun while we sanded some wood and did a bit of prep work for the garden project.

At 1pm I was due to meet my cycling coach, I met him at the National Cycling Centre and we sat chatting for an hour. Again I took Parker, and he was hungry on the journey so we nipped in for some junk food before we got there, he had a happy meal and I managed a burger and chips, although still not easily. I got a bit of a buzz talking about cycling goals and what we could start to work on, we’ve got a list of things to look at and some of them just start with me and the bike so we can already look at dates in the diary pretty soon after my last treatment on the 8th March.

Off we went back home, and messed around outside some more while the sun was out. I decided to take some of the anti-sickness tablets I was given on Cycle 1, Day 3 when I was discharged. I’d never had the need to take any but I thought I’d see if they settled my stomach. They have done to an extent, and I felt more like I wanted to eat this evening, managing a reasonably sized meal fairly easily. In fact, a few hours afterwards I would describe myself as a little hungry ! I’ll take the anti-sickness tablets again if my stomach feels a bit ropey.

I watched TV with the boys for a little while as Jayne had some friends around this evening and was cooking for them. We stayed out of the way to let them enjoy their night. I put the kids to bed about 9pm, and decided to do a little bit of painting in the garage for an hour, otherwise I’d have just ended up wanting to have a nap and it was too close to bedtime for that. I managed to finish painting the new patio table I made, after blowtorching it to give it the rustic look. I say made, it was bolting a few legs onto a 1 metre wide cable reel top, sanding, burning and painting it.

I’ve noticed the painful fingertips again today, and I certainly noticed the hot water coming out of the tap felt like it was scolding when it was no hotter than it usually would have been. That’s come on a lot quicker this time. So too has the fuzzy hearing, I’ve noticed that a few times today along with the usual tinnitus. Neither of these I can do anything about, just get on with it and wait for them to get back to normal again. These things, and the lack of appetite is all I’ve noticed so far, but unusually on Day 5. Things don’t normally happen on Day 5, I think it’s just a sign of chemo on top of chemo, the cumulative effect.

I expect tomorrow I’ll start to slow down a little, and feel knackered at the trivial things again. It usually sets in on Saturday and finishes me off on Sunday. I’m sure I’ll be able to manage some more painting and stuff. As always, I’m happy when I’m busy.

Thursday 21st February 2019
“Life is like riding a bicycle. To keep your balance, you must keep moving.” — Albert Einstein

Day 4 of Cycles 1 & 2 had been pretty much like normal days having had a good nights sleep, so I expected much the same today. As you might have guessed, I was up 4 times in the night to pee. One was a really close call, waking up in the middle of a dream where clearly I needed to go to the toilet, and had to hop out of bed pretty quick ! I got back to sleep straight away each time, and woke up when Jayne was getting ready for work feeling quite ok.

This Day 4 was a little different. I’ve felt really lethargic all day. It took me until about 10am to summon the will power to drag myself out of bed. I said I’d go to Costco with Dad and the kids, who are off for half term, at lunchtime to eat and pick up some things we needed. I pretty much sat on the sofa from 10am until 11.30am when he picked us up. I had no appetite up until about 11am, so no breakfast today. I think I’ve left my appetite somewhere and forgotten where it is.

We went out, and I struggled to eat all of my smaller than usual lunch. We did our shopping and headed home, walking around was fine when I was up and about. I bought another shrub for the garden and thought I could plant it when I got home.

When we got home, it was back to the sofa for a while and I didn’t feel like moving. After an hour or so, I went out to plant the shrub which took all of 10 minutes and returned to the sofa. About 4.30pm, it was nap time on the sofa which again is unusual for a Day 4, this is usually a Day 7 onwards affair. I slept until about 5.45pm and made some tea for me and the boys. Again I had a smaller portion than usual, and couldn’t quite finish it off.

It only really occurred to me at this point, the last two times I’ve been discharged I’ve come away with 2 days of steroids and anti sickness tablets. This time I didn’t get any, just 3 days of Filgrastim Injections. I’m not quite sure why this is, and in my haste to leave yesterday I didn’t inspect the bag of goodies they gave me. I’m guessing they may have made a little difference to how I was feeling today, and that not having them is why I’ve not had as normal a Day 4 as in the last 2 cycles.

About 8pm, I went out to pick up one of the things I found for my garden project while I was wide awake at 5am in hospital. I found it on facebook, 20 minutes down the road and the chap was really nice, I stood chatting to him for a little while. I’ll go out in the morning if I feel ok to pick up some more ingredients for my garden project, and if I can drag my lazy ass of the sofa I might start some prep.

Jayne got me a voucher at Xmas for a cycling coach, which is awesome because later in the year when I’m back up and running I can use the coaching to help achieve some of my goals and maybe set different ones. It took the shine off it knowing I had this treatment ahead, but I’m off to meet the coach for a brew tomorrow and chat through what we can do when the time comes. With most of the chemo behind me, it’s easier to focus on the good things ahead, like this, because there’s less between me and it now.

Today was one of those days where my mind wanted to keep moving, but unusually my body was one step behind. I’ve not had many days like that. When I’ve been physically tired, I’ve been mentally tired too. I fully expect Cycle 3 to hit harder than the previous two, because I’m starting from a lower point, I wonder if the lack of drugs thing has contributed. Either way I’ll get a good nights sleep tonight to recharge, and play along as usual, finding my way as I go.

Wednesday 20th February 2019
“I have to say goodbye to things in order to take on bigger things that I’ve always wanted to do” — Mahershala Ali

So I actually slept a bit last night ! From around 11.30am, to 5am I would say I slept, with distractions. Firstly, I woke up 4 times in this period, absolutely bursting to pee each time. When you’ve got to get up in a daze, grab a cardboard bottle, unplug Bob and wheel him along to the loo, by the time you get there you are nearly out of time ! Secondly the nurse woke me to do my observations, although I did sleep through it when Bob beeped after my 4 hour bag of saline finished and the nurse came to reset it to let the dregs go through around 3am.

Bob beeping at 5am when the dregs had gone through over 2 hours (which isn’t normal but probably done so to let me sleep), woke me up when the drip finally emptied. I wanted to be unhooked, it’s so much easier to sleep when you don’t have to worry about a line going from your arm across to Bob which you could yank out, however unlikely. Although waiting the brief time for that to happen, made me quite awake.

I sat with my headphones on from 5am until 8am, messing on the internet, looking for my next garden project and ordering a few bits for it. My appetite has done a runner, and I didn’t feel like breakfast but I forced down 2 weetabix and 3 slices of toast, just. I’m a little concerned that the lack of appetite means I’m somewhere closer on the path to nausea and vomiting, which I’ve been incredibly thankful to avoid so far. I’ve never needed to take anti-sickness tablets over and above the ones they dish out alongside the chemo. I’ve got some for if that time comes, but I desperately hope it doesn’t. Usually as soon as I finish one meal, I start daydreaming about the next and thinking about finding some snacks to tide me over.

Dave, Roy and I chatted away for an hour or two, but by 10am I think we were all tired again and we were all napping away. I’d only had about 8 or 9 hours sleep in the 2 days, so I slept on and off until 12pm quite easily, but still woke up a bit groggy. By then it was lunchtime, and I just wasn’t hungry. I’d only ordered 2 courses today, Soup then Pork & Vegetables. I just about managed that too, but was really full.

All this time, I was still waiting to start chemo, it hadn’t turned up. I finally got on around 1.45pm, and today it was about 5 hours. 1 hour chemo, 4 hours of salts. Sometime around 7pm I would finish.

So Roy, Dave and I chatted some more. Roy got the good news he was going home today after some radiotherapy. Yesterday he was told it was a possibility, so I jokingly told him to see if he could get out before me, we’d have a race ! He didn’t seem so sure about winning that yesterday, but he managed to get out around 6.30pm today, about an hour before me !

Marcus text me and said he’d drop by again around 4pm on the way to the airport ahead of his crazy 28 hour journey back to New Zealand. I didn’t want to depress him by taking him on the ward so I wheeled Bob with me down to M&S and we got a brew. We chatted away until 5pm, then he headed off to the airport. It was great to see him, and twice in one short visit to the UK. I headed up to eat my evening meal, although I had only ordered one course this time and struggled to finish it off.

I’d previously asked The Christie charity team if they could donate my money raised towards Ward 11, who have looked after me. It’s not all about building big fancy buildings, the wards need new stuff now and again and as they’ve been the ones looking after me, I wanted to give something back. I had a chat with the sisters about that, and hopefully they’ll be able to cash in on some things they need the most. Fingers crossed.

I’d be leaving soon, and felt bad that Dave was losing both of his most recent buddies very close together, but as luck would have it, another of his Christie friends on a different ward was moved up to ward 11 and got Roy’s bed within about 30 mins of him leaving. I really enjoyed Dave’s company, and I was glad when I was leaving that he’s got another friendly face along side to keep him company. If you’re reading this Dave, thanks for the laughs, the chats and the biscuits, and best of luck !

Jayne and the boys turned up about 7.30pm, just as Bob beeped to say he was finished with me, I got some nice hugs. Parker was in a dinosaur onesie which raised some laughs.

The nurse came over and took out my cannula, I already had my prescription injections and my discharge papers so it was a quick exit. We stayed and had a quick chat with Dave, then off we went. I said a few more goodbyes to the nurses I’ve become familiar with, and walked out with a beaming smile on my face. It’s not over yet but no more overnight stays, or marathon sessions of chemo. Just feeling progressively more crap and hitting rock bottom around Sat/Sun/Mon, hopefully perking up come Tuesday onwards, and have 2x Friday chemo top up’s, and chemo is finished.

• 

• 

That wall of medals you see, has inscriptions of the names of people or groups that have raised over £4,000 for The Christie Charity. I’m up to £1320, and my employer will add £250 on top to support my cause. But that’s not even half way there, although considering I set out to raise £1,000, I’m thrilled at how much I raised already. I’d bloody love to get a coin engraved on the wall though, so I’ll have a think about what I can do over the course of 2019 to maybe stretch to that bigger target. #Goals. https://www.justgiving.com/fundraising/chemophil

Eventually we will move onto the more serious stuff, having a CT scan around early April, and keeping all of our fingers and toes crossed that the chemo has actually done what it was supposed to do, and killed the cancer. Eyes on the prize so far has always been getting to the end of the chemo, of which there’s 2 weeks left, I’ve always taken for granted it would do it’s job. All I can do for now is hope that’s the case, get back to some kind of normality, and dream about celebrating the all clear in the not too distant future.

Tuesday 19th February 2019
“Good food, good company, great listening music and a wonderful atmosphere. You can’t ask for anything better” — Anthony T Hincks

Yesterday was a looooooong day in that it finished about 3.30am today when I finally got to sleep. As predicted, the steroids kept me pretty much wide awake until then, despite feeling completely knackered most of the day. I think I dozed from 1am to 1.30am but a chemo changeover and needing to pee woke me back up. When I got onto the 4 hour saline/salts bag, I went for a pre-emptive pee and then managed to get to sleep until about 7.15am when it was finished and I got unhooked.

Around 2.30am, I was slowly running out of things to read or watch on the internet, and I started noticing how hungry I was. I thought about wandering out for breakfast when 8am came, given chemo wouldn’t start until late in the day (because of yesterday’s delay,) but then thought against it in case I missed seeing the Dr. So what else do you do at 2.45am, yes, download the Uber Eats app and see who will deliver to the hospital. You’ll already know I enjoy the sins of a McDonald’s breakfast, and I saw they started taking orders at 8am.

I’m not on commission here, but it was great as a first time user. At 8am, I went on and ordered my food. The best bit was leaving a note for the driver, like arranging a weird blind date in a strange place. “Oak Road Drop Off Point, The Christie Main Entrance. Postcode _______ . Blue Hoody / Grey Shorts.” I watched his journey on my phone, tracking the little car down the roads until he was nearly here and walked downstairs to meet him. It worked though, he passed me my food through the window, and I went back to my bed to eat. A good start to the day.

• 

• 

After breakfast one of the ward doctors came to see me, although she was not familiar with my treatment regime. The only thing I wanted to know was when we could start today’s chemo, because there needs to be a gap between days. She didn’t really know but said she’d find out. She checked me over and everything else health wise for me was OK. Around 11am ish, my Dr came and said he was happy to bring it forward and it was agreed we’d start around 3pm.

Basically from all of us in our 4 person room waking up this morning, we were chatting away about a whole range of things for a good few hours. I’ve landed on my feet again in this room, I’ve said all along the company and conversation can really make a dull trip a whole lot brighter. The chap to my left wasn’t around last night until late. I spoke to him today, he was about 31 and was in the stages of diagnosis for lymphoma, with a long but not yet defined road ahead. I shared my experiences and advice for what it was worth. He left for home around 2pm and we wished him well.

3.30pm – I’m hooked up. It’s visiting time, so the others have visitors, and it seems like a good time to try to nap, although this first chemo bag is just 30 mins so I’ll wait for it to empty or I’ll be woken in 15 mins. Today is the same regime as yesterday, with an extra 30 min chemo bag tagged on the front, so I’ll be finishing up after 1am. For the next 10 hours it will be regular trips to the toilet with Evil666-Bob as ever.

8pm – I’ve lost more time due to big gaps between changeovers, I’m due to finish at about 3am now. It’s no big deal, I’m here anyway, the last bag is a 4 hour bag so I can try to sleep about 11pm. They’ll still need to take my blood pressure occasionally so a full nights sleep isn’t a guarantee. The giant syringe of steroids will also have its say.

I feel absolutely fine, again just that ever so slight fuzziness I’ve described both times when walking around during the chemo drips, similar to when you are pretty drunk and your body is full alcohol. No other issues today.

We didn’t end up with Andy the star nurse today, but it was his last day before a week off. I got to say goodbye and thanks for his help in previous cycles. That’s my first goodbye, and a nice reminder for me of being in the latter stages of the process. Hopefully this will be last ever time on a ward here due to successful chemo.

I’ll watch some Champions League football, maybe see where else Uber Eats deliver from, then I’ll wait til 11pm for my last bag change and see what the night brings sleep wise. Today has flown by relatively quickly. Great conversation and company, both here in person and on some facebook posts (you know who you are!) Kept in touch with Jayne and the kids on video calls. Chilling with some music when it’s been quiet. Good food. You really can’t ask for anything much better.

Edit 9.30pm – Dave has blagged us some ice cream from the nurse and we’re sat watching the Liverpool Bayern match 😀

Monday 18th February 2019
“You usually have to wait for that which is worth waiting for” — Craig Bruce

Well today started with a bang ! Up at 6.30am, and needing to be out of the house for 7.10am or so. I didn’t clock it really, but nobody in the house had any urgency to get ready, not like usual. Then just a before 7am, the doorbell rang ?! Who the heck rings your doorbell before 7am ?

I rushed downstairs, opened the door, and to my utter surprise there stood before me my Best Man, Marcus. I’ve not seen him in the flesh for a few years, he now lives in New Zealand, so to be at my door early doors on the morning when I’m getting ready to go to hospital, it was one of those time slows down, am I processing this right (?) moments. Taxi for Evans ! Well done and thanks to Jayne for being the inside woman, and keeping it a surprise 🙂

Once I realised what was going on, we had a brew, chatted, and then he took me to the hospital in the fastest car in the world – his hire car. We chatted the whole way, parked up, checked in and then went for some breakfast. He stayed til around 11am, then went off to visit some more friends whilst he’s over here. It was brilliant to have some good company, spending a good few hours catching up.

I was hoping that getting in earlier than my appointment time would help me get to a bed quicker again today, but that didn’t turn out to be the case. I bumped into another person on the same schedule as me who has been struggling a lot more than me, his brother wheeled him in sat in a wheelchair. We caught up, then he went and found a reclining chair to relax in. I’m shocked it’s hit him so hard and he’s shocked I’ve been working and gardening. When I caught his brother a few hours later, he said they’d been told it may be 5pm before a bed was ready for him.

What was nice today, was that there was a chap called Gary in the waiting room who was there for the first time with his wife. As good as the care at the hospital is, they are not always great at explaining to you what will happen. So when you end up in a waiting room for hours and didn’t expect it, it can be a lot more frustrating than if you were expecting it. This is particularly annoying if you are a first timer. The majority of patients are doing things for the second, third or twelfth time as a lot of treatments or scans are repeated a lot, so they know the drill. Just like me, today starting it all for the third time. It was good to be able to share with them what the sequence is, what to expect, etc etc, and make things a little more understandable. You feel part of the community.

Anyhow, it was about 6.50pm when I got called to say my bed was ready. I’d seen the Dr at 9.30am and got the go-ahead to start the chemo, so that was just over a 9 hour wait 😦 I’d already missed lunch so bought some from the shop, and now I’d missed the evening meal too. The nurse found me a sandwich and a yogurt on the way, then organised some beans on toast too.

The great news was though, I am in bed 19, ward 11 again, the same bed as Cycle 2, and opposite the bed from Cycle 1. It might not seem a big deal, but the familiarity of it is great. It’s out of the way, close to the loo, I’m next to a window with a decent view and I know where everything is. I realise had a bed come up sooner, it would likely have been elsewhere, so on reflection I don’t mind the wait as much. More great news, one of the nurses from Cycle 1, Andy, was looking after me albeit briefly when I arrived and will be here tomorrow. All the nurses are good, Andy is the best so far and a good guy to have around.

They hadn’t put a cannula in this morning either, much to the annoyance of the nurse looking after me once Andy went home, and it was 3 attempts today to get one in. Apparently your veins start to take a hit from all the prodding and the chemo, which makes sense because early on it was always done on the 1st attempt. That was about 8.15pm. I had my pre-meds around 8.45pm, and then started the chemo about 9.25pm.

If you flick back to Cycle 2, Day 1 you’ll see the breakdown of drugs, I’ll not repeat it. But suffice to say it’s 4 litres of fluid over 9 hours (not including changeovers, so more like 10 hours.) The downside here is that the steroids will keep me awake having taken them so late, even though I’m knackered. I’ll also be peeing every hour or so again due to the fluid intake and the extra water I am encouraged to drink, so by 7am tomorrow I’ll be a train wreck.

On the plus side, I got up here in time to watch the football, another win for Ole. I got chatting with Roy and his wife opposite me, who is here for treatment that will relieve his pain. Despite that, he’s good company, along with Dave next to him who is great for a conversation. Dave’s football stream was 30 seconds ahead of mine so I knew when to pay attention to the game from the commentary I could hear.

Just one thing though, if you’ve followed the blog, you’ll be familiar with “Bob.” That’s the nickname I give to the IV Pump I have to wheel around everywhere including the many trips to the toilet. If you are superstitious, look away now. I just saw what number has been allocated to today’s Bob…

Luckily, I am not 🙂

Sunday 17th February 2019
“In the spring, at the end of the day, you should smell like dirt.” — Margaret Atwood

It’s not quite spring yet but you would be mistaken again today for thinking it was. I spent some of the day in the garden as planned, the rest chilling out. I woke about 8.30am, and stayed in bed for a bit before getting up about 9.30am. I felt ok, a little tired still, but generally well and energetic.

Luke and I went to buy some soil and fertiliser, so we could plant the shrubs we got yesterday, and the new tree when it arrived. I swapped Luke with Parker then, who likes digging up worms and such like, Luke stayed indoors to help Jayne tidy the house. They then went out to get some ingredients for a meal Luke was going to cook, and then serve, so he could earn a cubs badge.

Parker and I spent about 3 hours in the garden, then going to the tip to get rid of a load of awful “new build” soil (aka clay and bricks) which we dug up and replaced with the new stuff. He was great, very helpful and didn’t get bored. We did half of the planter I built last year… (still awaiting plants for the other half.)

Then we dug up a tree that wasn’t doing so well, dug out all the crap soil and replaced it with some better stuff, carefully taking the half grown tulips out and replanting them in the process.

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The (willing) child slave labour continued with some window cleaning. We had a great time ! They did the low windows, I did the high ones, and we all got wet !

After that, it was about 3pm and I was knackered. We retreated to the sofa for a while, before Jayne did an excellent job of helping Luke prepare his first ever family meal. Luke prepped all the ingredients, and made a very nice Cottage Pie. For dessert, he’d dipped strawberries in chocolate, and served them with mint choc chip ice cream 🙂

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All in all, it’s been a fantastic day (and weekend) before going into hospital for 3 days again. I’ve felt ok today, nose still a little runny, still bleeds a little. My fingers are hurting again, I couldn’t open a can of drink before without the ring pull feeling like it was going to cut into my fingers. I’m still adjusting to this since I noticed it yesterday. Later on, around 7pm, I’ve developed an ache in my gum in the same place from about 2 weeks ago, next to my wisdom tooth, so I’ll be having painkillers before bed.

Other than that, it’s an early start again tomorrow to get to the hospital. Jayne is dropping me off so I’ll be there for about 8am again. Hopefully that will get me to a bed nice and early like it did 3 weeks ago, either that or my getting there early was pure coincidence. My bag is packed, it only took 10 minutes this time around knowing what to pack and not. Time for a shower, then bed. I’m absolutely knackered, and ready for a good nights sleep.