Wednesday 6th February 2019
“There is no harm in repeating a good thing” — Plato

I didn’t get tired until about 11.30pm last night, it’s rare Jayne gets to sleep before me but last night that’s how things went. I wasn’t sure I needed that evening nap. I woke about 7.30am again, 8 hours sleep. Thats 1 hour less than the day before and 2 hours less than the day before that, although I wished I had got to sleep a bit earlier.

Same routine today, got the kids ready for school, dropped them off in the car and went on to work. I parked in the building, took the lift upstairs and spent the day at my desk, on the phone and in a couple of meetings. A fairly short but productive day again, then home to pick up the kids. I did feel a little more tired today, so I had a quick hour long nap as we had some things on this evening. Again it wasn’t the best nap, I might not have needed that either.

Later on, we went to see Parker get invested at Otters. It was supposed to be last week but I asked to delay it a week as I would have missed it being in hospital. He did great !

Not much movement in symptoms today. My gum is still sore, I’ve discovered a tube of bonjela at home which does a reasonable job to ease the pain, my tongue and throat are better. Heartburn is something I keep forgetting to mention, it’s become a daily and nightly occurrence, I bought Gaviscon yesterday and that does a good job after every glug. I’ve become a walking pharmacy !

I’ve also noticed that the inside of my nose is sore and the skin feels broken. When I blow it, it bleeds a little nearly every time now, particularly in the morning. This is another one to call out on Friday in the context of my blood results. Nose bleeds can signal a low platelet count, which at worst would require a platelet transfusion, although I suspect it’s not that serious as none of my bloods to date have shown an issue there. I’ve had more muffled hearing at points, I don’t know if it’s occurred less, or I’ve noticed it less because I’m getting used to it, but I’ve not clocked it as often today.

On the plus side, my taste is close to being back to normal, which is great considering Jayne had cooked some 10 hour slow cooked pulled pork today 🙂 Not a lot else to say about today though, it was much the same as yesterday. The days are back to passing by at a reasonable pace, and it’s a psychological milestone to look forward to tomorrow as it will mark the half way point in my treatment. Hasn’t time flown !

Tuesday 5th February 2019
“There is no health without mental health; mental health is too important to be left to the professionals alone, and mental health is everyone’s business” — Vikram Patel

What a difference a day makes, 24 little hours…

The usual last night, I went to sleep at about 10.30pm, and I woke about 7.30am to the usual morning routine in the house. I’ve been getting 9 or 10 hours sleep a night, then napping too more recently. My usual sleep would be about 7 and a half hours per night during the week, with maybe 1 granddad nap per week on the sofa one evening much to Jayne’s amusement and mockery of me “getting old.”

I woke perhaps a little earlier than I’d have liked, there was still bit of sleep left in there. Nevertheless I said I’d drop the kids at school, so I got up and milled around. Based on yesterday, I was expecting another mope on the sofa day in-between dozes.

Something felt a bit different though, really quite different. I wasn’t getting out of breath wandering around anywhere near as much, I woke up to a state of alertness pretty quickly compared to recent days, and I had that lost feeling of being “ready for the day.” Great I thought, I’ll log onto work today and start to get back into this routine I mentally long for. After about 20 minutes of wandering around the house and getting the kids ready, I made the snap decision in my head that I felt so well, I would actually go to work. A remarkable turnaround in the space of 24 hours.

I’ve dipped in and out of the mental health conversation on here briefly, as I feel it’s important. You lose count of the amount of times you give some blood for analysis, have your pulse and blood pressure done, temperature etc. Physically, you are more than adequately looked after. To a lesser degree, you are asked infrequently how you are coping, but the tendency is to refer back to the physical elements, i.e. yes I’m still eating, doing house chores, driving to the supermarket. The mental health conversation is more anonymous, friends, family and colleagues are more likely to ask this.

My GP’s office, which can sometimes be difficult to get into unless you call at precisely the correct time, impressed me back in December by calling and asking me to go in “for a chat.” I got a 4 day in advance appointment outside of work time, which ordinarily is almost impossible to obtain, and went in for the chat. Appointment troubles aside, the Dr’s are great. To their credit, it was to see how I was coping following my diagnosis. The screen said words to the effect of “cancer care review.” We had a good chat, and I was asked to book again once I got the results of my CT Scan. This was of course bad news, chemo required, so I went for another good chat. This is not typical of a normal week though. Typical is knowing where the right support groups, online forums, telephone lines and reading material are, if you need them.

The last two days (Sun/Mon) have been my lowest point physically so far, a really quick descent into exhaustion, like cycle 1 but a little worse. They have also been the worst 2 days mentally. I’m 4 weeks in, nothing is new anymore so the humorous novelty and curiosity of it all, finding your feet, has gone. I’ve spent far more time in the last 4 weeks, and in particularly the last 2 weeks I’ve been off work, in my own home, and the word prison springs to mind slightly. Two of the things in life that cheer me up, exercise and food have been tainted. I have no energy to exercise, and food has been tasting off. I keep saying it could be a lot worse, but all things considered it’s been a really rubbish few days both physically, and mentally.

Lots of people message me, and keep in touch throughout the week, asking how I am and checking in with me. It’s touching to have such a good support network. It helps keep you going, and I know there are plenty of ears to bend out there if I need to.

But back to today. That snap decision to go to work. Mentally, whether sitting in-front of the TV watching films today, or being productive in-front of my work computer screen, the negative drain of another day locked in the house was as unappealing as seeing Liverpool win the league. From a work perspective, I could achieve much the same at home, as I could from work. But the freedom of being able to get out of the house, drive purposefully somewhere, interact with humans face to face and “feel” a sense of normality and contribution… that has power. That keeps the mental juices flowing. It’s a win in my book, today was worlds apart from yesterday, a real mental lift. Tomorrow I might not be able, but today I was, and I did. The folks at work are keeping a real eye out too, being incredibly supportive.

After 6 hours at work, I got home and cooked a lovely Spag-Bol for us all, then sat to eat together. My taste has returned somewhat today, it’s better than it was. Other than having to eat it at a snails pace because of my gum still being sore, I actually really enjoyed it, another small lift. At 6pm I was somewhat tired, so I went up for a nap and managed an hour. It took quite a while to drift off actually, it might turn out to be one of those naps that just stops you getting to sleep quite as quickly at bedtime (Edit – still wide awake past 11.15pm.)

My hearing has been a bit off again today, plenty of tinnitus, but lots of points in the day where it still occurs a little muffled. That’s bothering me, but there’s nothing I can do until Friday. Thankfully yesterday was my last filgrastim injection, to keep the neutrophil (immune system) count up. That might stop an element of the tiredness too moving forward, until the next time I have to take them. Today is also the first day I haven’t worn a hat at any stage of the day. It wasn’t that cold, no hat suits work, and I think I’m getting over being bald.

Suddenly a potentially depressing week is broken up really quite nicely. We’re pulling up out of the nose dive. Hopefully tomorrow is a repeat of today. Then ease off and work from home Thursday, which won’t be so depressing having made it out of the house for 2 days. Finally, off to hospital again on Friday for the usual routine of bloods, chat with the Doctor, have a shot of chemo. Although on Friday, there’s a 3 and a half hour gap from seeing the Doctor at 9.40am, to going up for chemo at 1.30pm. I need a plan for that…

Monday 4th February 2019
“Luck is great, but most of life is hard work” — Iain Duncan Smith

I’ll try and keep upbeat as best I can but the usual go-get-em approach has been sapped away a little these last few days, as I get deeper into cycle 2. It’s still not horrendous, don’t get me wrong, but maintaining a routine seems to be slipping further away these last few days and that gets me down. I could be unable to eat, being sick all the time, confined to bed etc etc and I’m not, so I count myself lucky. I am unable to do much at the moment though.

I was sparked out last night about 10.30pm and slept all the way through the noisy routine of Jayne and the kids getting ready for school this morning, waking finally about 8.30am. I stayed in bed, and finally mustered up the energy to go downstairs about 10am, where I made some easy breakfast and setup camp on the sofa.

Sit rep. I am still getting very tired moving just a handful of metres, this is the main issue. All I want to do is sit on my backside and mentally switch off which is not like me. It’s been fairly consistent all day and hasn’t really got any better. I still have a little bit of a sore throat, the back of my tongue and gums at the back are sore. This is making eating a slower affair, not impossible but not as enjoyable. My lips cracked on both sides yesterday too, right on the joint of top and bottom, which is also sore when eating. Taste is still not 100% but I’m getting used to that now and it’s not stopping me eat.

Despite doing the square root of nothing this morning, Xbox / watching “Sully”, it was nap time some time after 2pm. Off to bed I went, fell asleep pretty much straight away and then got woken by the kids coming home around 3.45pm. I could have slept more but that was me awake, and after about 20 mins I summoned the energy to go downstairs.

Had a gorgeous stew for tea that I’d been smelling in the slow cooker all day, courtesy of chef Jayne. Then it was just been an evening of TV sat on the sofa again, not wanting to move. I’m looking forward to my bed and don’t anticipate any problems nodding off.

I’ve been looking forward to the mental stimulation of dropping back into work, but not like this. I’ll take it day by day hoping there’s an improvement at some point, still no pressure there, just my desire to keep busy.

Perhaps most strange today and yesterday in terms of sensation, my hearing is a bit fuzzy. I’ve noticed that I’m hearing things a bit muffled, like there’s thin layer of cotton wool in my ears. It’s different to the tinnitus I had last cycle, although that is here again. Permanent (degrees of) hearing loss can be a side effect of the cisplatin. I’ll have to keep a close eye on this and it will definitely be on the list to chat with the Dr about on Friday.

Sunday 3rd February 2019
“If there is no struggle, there is no progress” — Frederick Douglass

Getting straight to the point, today has been an unexpected struggle.

The schedule for today was wake up, visit Mum briefly to drop some things off. Then come home, rest until Lee and the kids came for a visit, have some pizza with them and watch the football, then just see the rest of the day out and hopefully feel up to a day back at work tomorrow catching up from home.

2.30am, the laxatives kicked in and I was up for a while, an annoyance timing wise but it served a greater purpose. The kids then woke us at 8am, which wasn’t so bad but I still felt quite tired. I mentioned yesterday there’s a bug in the house. Jayne is still struggling a bit, Luke seems to just be coughing still. I was a bit dehydrated, I had a sore tongue and a mildly sore throat, but my temperature was ok. No emergency referrals needed though.

I went to see my Mum around 10.15am, and noticed the 15 metre walk from my car to inside the house was doing me in. By that I mean out of breath, heart rate high, feeling exhausted, holding onto the worktop when stood. Going back to Cycle 1, the tiredness from walking around hit around day 7, but Cycle 2 Day 7 seems a fair bit worse. Just standing to talk was and is hard work today. Luke and I stayed there for about half an hour and came home, Jayne and Parker were still out shopping. I had an overwhelming urge to curl into a ball on the sofa and sleep, but I didn’t as visitors were imminent.

Our visitors arrived at lunchtime and we sat chatting with a brew, I ordered pizza in and then we watched the football, it was really enjoyable and the kids had a great time. Around 3pm, through the 2nd half I was struggling to be awake. As soon as they left for home around 4.15pm, I went straight up to bed and said I’d have an hour / hour and a half nap. 2 hours later the noise of the kids coming up the stairs like a herd of elephants woke me, and I was really groggy, not ready to be awake at all.

Since then, about 6.30pm, any amount of movement is a real effort. Cooking tea in the kitchen was hard work, and since I’ve eaten, just going between rooms is a challenge. I’ve retreated to the comfort of our bed with the laptop about 9pm, and I can’t wait to do the pre-bedtime routine and get to sleep. Pre-chemo I remember reading about getting tired ridiculously easily and scoffing at the idea, it’s quite hard to comprehend before you’ve experienced it. It still baffles me !

Days 7 to 10 of each cycle are usually the low points after the 3 day cocktail of all 3 drugs has its delayed effect, and this one has arrived bang on the money. Ever the optimist I hope this is rock bottom for cycle 2 and with some minor miracle tomorrow I start to bounce back, but I get the feeling tomorrow is going to be much the same given the 2nd half of today has been worse than the 1st. If not, tomorrow might be a record breaking day for daytime sleeping. I’ve felt less tired going to bed after a 100+ mile day in the saddle. Today I’ve done 1750 steps and had a 2 hour nap 😦

My worry was always that in cycle 1 you start from 100% fitness. When you start cycle 2, you don’t, maybe around 85% or so, maybe less. Hence cycle 2 hits a little harder. There’s been a marked difference from cycle 1 to 2, I know it’s 3 weeks away yet but I dread to think what this point of cycle 3 will be like. Although the silver lining at that point will be that it’s the home straight. Eyes on the prize !

Saturday 2nd February 2019
“Friends are the sunshine of life” — John Hay

Fairly brief today… woke around 9am, slept ok again but lightly. Steroids finished yesterday so hoping sleep will improve a little more the next few days. Suitably refreshed, I stayed home while Jayne took the boys for a haircut and started tidying the house, albeit that was a little tiring but necessary with guests coming over. I sure wasn’t a quivering wreck of jelly from yesterdays bike ride, no real impacts noted thankfully, no aches / pains etc.

Early afternoon our friends came over with food, Mac’n’cheese for the kids and home made chilli con carne and rice for most of the grown ups, both were lovely. I span both child and adult so had a mix of the two. Yesterday I signed off asking for my taste back, and there was mild improvement today to the point I enjoyed lunch, but it still wasn’t as flavoursome as I imagine to was for the others. I had simple sandwiches in the evening, which were better than bland again but not quite there yet.

It was nice to have some company today, have a chat and chill out at home. We watched the rugby too, which is unusual for me but it was good to watch England win somewhat unexpectedly.

Sorry to talk toilet talk again, but in cycle 1 I got a bit backed up and then decided to try laxatives, which I gambled on one too many times and spent an entire day going to the toilet. In all honesty I’d completely forgotten, and I’ve been back and re-read my own blog. I’ve reached that crossroads again today. I’ve not drunk as much again partly because of this taste thing, but I’m also a bit bloated because I’ve still been eating a lot but not going to the toilet so easily. It’s uncomfortable, and before bed tonight I’ve gambled on taking the poo pill. Fingers crossed for some relief tomorrow, but not too much relief like the last time.

So a fairly low key day today in terms of physicality. The housework tired me out briefly but was a short part of the morning, I only did 2500 steps all day, but I spent the rest of the day on my backside and I’m going to bed pretty wiped out tonight. I am starting to wonder if the proactive exercise thing is worth a go. When I laze around a lot in a day, I do seem to end the day tired.

Lastly, Jayne is coming down with some kind of cold. Luke has started coughing too. That might be tricky to avoid even with all the alcohol gel in the world, but I’m hoping the Filgrastim injections will be keeping my bloods up to the point that if (and when) it does get to me, it’s a fairly simple affair. If not, emergency hotline…

Friday 1st February 2019
“True enjoyment comes from activity of the mind and exercise of the body; the two are ever united” — Wilhelm von Humboldt

Another good night’s sleep behind me, and I felt well enough to walk the kids to school as I’d hoped. Full wooly bobble hat and big coat required for the morning cold. A little later I went shopping for bread, milk and the basics with Dad to get some supplies, and we had lunch out.

My biggest problem today has been taste again. I said yesterday my taste had gone off a bit again like cycle 1, but today it has seemed worse than ever and I’ve had no enjoyment at all from my food today. Breakfast bagels were very bland, lunchtime posh hotdogs with ‘chup tasted gooey and flavourless. I cooked us a Gammon roast dinner for our Friday night in, even had some pigs in blankets in the freezer from Xmas, and it tasted awful (for me, the others enjoyed it!) Drinking too, Vimto and juice is really bland, even Cherry Pepsi Max I had at lunch, and I definitely haven’t drunk enough today. I’ll just have to force that issue or I’ll feel more ropey. Must. Stay. Hydrated. Although I recall this only lasted a few days last time, I can’t wait for it to go away.

I decided that if my Filgrastim injections have been causing some tiredness, then this time I’ll inject them before bed each night, so my body does the hard work reacting to them while I’m asleep. I have no medical advice on that, but it seems logical so I’ll give it a try. So far so good, I did it about 10pm last night and I’ve felt quite energetic today compared to last week.

Early afternoon, I have to say I was pretty bored and my mind was wandering. As I’ve said before, I don’t do boredom. Jayne was working from home so I tried to stay out of the way and let her work. Feeling relatively good physically today, I mulled over (as I have numerous times the last few weeks but always decided against) taking the mountain bike out for a very gentle ride, i.e. the bike equivalent of walking pace. My usual style on the bike is flat out or nothing, so it would be a considered effort to go easy. Most of the snow has gone here, and I would put the bobbly tyres back on it to be sure.

After careful consideration I thought sod it, it’s Friday. I’ll only ruin my weekend if it doesn’t work out and I can still recover Sat/Sun then focus on being back in a routine from Monday. So off I went. Thick pants, thickest cycling jacket I have, layers, wooly hat, face/neck warmer and winter cycling boots, I sure wouldn’t get cold.

It was bloody brilliant, I smiled the whole way. When I say the whole way, I managed 3.5 miles with a few stops to take pictures, riding for about 20 minutes in total on and off. I didn’t go hard enough to get tired legs, I didn’t get to the point of being out of breath, and I’ve been advised not to get out of breath so I heeded that advice. I kept an eye on my heart rate too and it was more than sensible. Mentally though, it felt just a little bit like a normal day, just enough to give that little buzz. A short independence from it all, it felt a little like rehab.

I guess you are wondering at what point during the remainder of the day I fell into a pile of jelly, and napped for 3 hours. I’m as surprised as anyone to say that when I got back in from my brief foray, I actually felt energised. Yes, energised, and surprised. I haven’t felt tired or lethargic since. I walked to get the kids from school again, felt fine after that too. I’m still going strong now at about 8.30pm.

I’ll not be getting carried away, a 20 min ride and a few walks doesn’t reflect peak physical condition. On the flip side, it shows I’m not dead in the water. I’d love to do it again but I know the chemo has a drawn out effect and in theory I should feel worse each day until about Monday then bounce back. I have read stories of other people going through BEP who have reported that gentle exercise does serve to keep the body energised, so long as it’s appropriate. Maybe there’s some logic here, to keep the body moving and active to an extent. Or, tomorrow is when I’ll turn to jelly. We live and learn.

Weekend plans are still being drawn up but will be mostly staying at home seeing friends, maybe family too, and getting the housework done. Will the legs ache tomorrow from 2 walks, some shopping and a short ride ? I can’t wait to find out. My main wish though, can I have my taste back please ? I love my food too much.