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.

Thursday 31st January 2019
“Saying goodbye doesn’t mean anything. It’s the time we spent together that matters, not how we left it” — Trey Parker

Today has been somewhat of a sombre day, but a nice one to be able to look back on.

I went to sleep around 9.45pm last night, and woke around 7.45am, so I had a good run at catching up on what I missed out on in hospital, although it was light sleep again and I had to pee 3 times as usual. I still felt tired but reasonably refreshed. I’ve taken my steroids, my injection and anti-sickness meds, and I’m still quite hungry albeit that crazy appetite seems a little more suppressed than it has been. I think I’ve put on upwards of 2kg on since 7th Jan, perhaps made slightly worse with the fact I’m losing leg muscle and adding to the spare tyre growing around my waist.

The school have been good to us. Firstly they know what’s going on and are keeping an eye on Luke and Parker. Secondly, because of child safety you can’t drive onto the school grounds to drop the kids off, and that’s a good thing based on how busy it used to get. If you have special circumstances, you can get a pass to drive into the car park by exception, and a friend at the school has helped me out with one. I still like to walk them in to get some exercise and fresh air if I can, but today wasn’t one of those days. I drove them in, but not before having to pour water over the car because both doors were frozen solidly closed having been sat through this cold weather. Hat definitely required, I haven’t got used to a naked head in freezing temperatures yet !

I rested well on purpose as there was somewhere I really wanted to be today for a portion of the day. In my mid to late teens, I spent a lot of time with a great friend Lee, still a great friend to this day, and his family most of whom I’ve not seen in person for a while. Unfortunately last year he told me his Uncle Stan had lung cancer and it was only a matter of time before it took him. That’s been a really difficult situation for the family for a number of months, and a few weeks back he finally succumbed to the awful disease.

I have some fond memories of Stan, he’d sit with us on a Saturday morning and put the world to rights with us, tell us about all the things he’s been learning by listening to the radio and surfing the internet, and he’d always encourage us to pay attention at school and make sure we had the best start in life to be able to make something of ourselves. But the one thing that stands out, we’d always be laughing, and that’s what I’ll remember. The service was today, and I was keen to get along to pay my respects and be there, which luckily I was able to manage. I continue to count myself lucky that the odds are with me on this journey, in light of all reminders along the way that things could be far worse.

On the lighter side of things, I didn’t have an appropriate hat, it was bloody freezing today again and I’m still not thrilled at all about rocking the baby smooth look. I picked up a more formal grey flat cap on the way there, and it wasn’t until I caught a glimpse of myself in the window at the crematorium that I realised I’d turned up looking like one of the Peaky Blinders. They were filming in Stockport a few weeks back, maybe I could sneak in next time and try and blend into the background?

I chilled out when I got home, then used my pass to drive and get the kids again, but by 4pm I was ready for a nap. If you’ve been following for a while you will know I’m keen to soldier on where possible, but I gave in today and had a much needed hour in bed to recharge. I still feel a bit wiped out and couldn’t be bothered standing to cook so Jayne kindly sorted the boys out and I’ve thrown some low maintenance jacket potato’s in the oven.

In terms of chemo side effects, it’s similar to last time. My skin has dried out and my lips are very dry, Lipsyl is needed throughout the day to stop them being sore. I have a very minor phlegmy cough and slightly tight chest, not as bad as the last 3 times I’ve had the bleomycin but it’s there. I am of course tired, but that’s par for the course. My taste has disappeared again, Vimto and Ketchup being the 2 foods today making this most noticeable. A strong cup of tea barely registers. I think that only lasted a few days last time as it is Cisplatin related. No metallic taste though as others report.

I’ll likely crawl into bed at 9am tonight and get off to sleep not long after. It would be nice to walk the kids to school tomorrow, maintain that basic level of exercise. I averaged about 2200 steps per day in hospital, and the week before was only up at about 3000 – 3500 per day. Not my greatest concern, but where I can I’d like to keep the blood flowing. Other than that, no real plans. Rest, recover, and work towards getting back into a routine next week as best I can.

Wednesday 30th January 2019
“You don’t appreciate life until you get to the other side. Like lying in a hospital bed” — Fabrice Muamba

Yaaayyy, I slept a reasonable amount last night. Very light sleep, but from about 11.30pm to 8am, I reckon I was only awake for about 90 minutes of that, whether having observations taken or running to the toilet and then settling back down.

I amused both myself and Mike last night. About 11.30pm I got up to go to the toilet before I went to sleep, and as always, I stood up, unplugged Bob the IV pump from the wall, then walked off to the toilet. I only remembered half way there, that I had been disconnected at about 11.10pm as my regime had finished for the day, and Bob was an unnecessary passenger on my journey. I walked back and plugged him back in, much to Mike’s amusement, then went off to the toilet alone for a change !

The breakfast call woke me up at 8am, I ordered my usual toast and weetabix with a cup of milk. Creature of habit. Luke video called me so I said hi to the family, and then got on with the day. Another shower has taken away yet more of my hair now, I’m not quite baby smooth on my head and face but I’m a lot closer. I am so pleased my eyebrows have stuck around, and I don’t want to jinx it but they seem like they are holding on tight. Eyebrows make make a bit of a difference between looking bald and looking ill, particularly when hiding under a hat !

Chemo arrived around 11.30am, a much shorter day today:

• 1 Litre of fluid with Etoposide over an hour, chemo
• 1 Litre of fluid over 4 hours. Replenishment of salts

All being well, I’ll be done by about 4.45pm, have the cannula taken out, my pharmacy order will have arrived on the ward, and we can hit the rush hour roads. I’ll be going home with anti sickness tablets, steroids, and this time proactive filgrastim injections to make sure my neutrophils don’t bottom out again like in cycle 1.

Jayne is picking the kids up from school, then heading down here to sit with me until finishing time. It will be the kids first time visiting me here, hopefully it won’t scare them too much ! They’ve seen most of it across video chat but it’s different being here in person.

Today I’ve been daydreaming about getting back to normality, in particular exercising. I have the cycle ride in September to focus on, and it will need lot of training to get me there. Some folks at work are doing the 10km Manchester Run towards the end of May, that sounds like something a bit closer that I could manage. I could get (slow) 10k ready in 6 weeks, which gives me a few weeks to recover from the chemo first. I’d be happy just to jog the whole thing without stopping, walk it even. I like goals and it’s a good one to go after, cardio helps the bike work too. I’m just dying to get back out there…

8pm – I got out about 5pm, said goodbye to the chaps in my room and we wished each other good luck. I’d spent a good part of the day chatting to Mike again, I will miss him with his great humour and stories, he’s been great company those last 26 hours or so. I do find it hard to leave people like that, like John in cycle 1. Firstly it’s the shared experience, you feel in it together for that short time and we’re all fighting our battles. However, then the guilt kicks in walking out of there, knowing there’s high chance I’ll be cured, and the chances are they may not. It’s really sad, but you have to see the bright side and if we brought a bit of cheer to each other for that brief time, that’s all part of the journey. Maybe I’m too much of a softie at times.

It was great to see Jayne and the kids though, and off we went home. The boys were a little taken aback, Parker was asking why people were being moved around in wheelchairs. I don’t think he understands I’m younger, fitter and have coped a lot better than most in there, so it was unusual to see the more elderly, and poorly patients.

I feel fine leaving the hospital, my utter tiredness from last week has gone, and I guess it’s just the slippery slope of getting more tired from now until next week, then perking back up again and going back for the Friday chemo blasts. I like knowing what to expect and in that respect I’m “enjoying” cycle 2 more than cycle 1. This time though, I’ve got the Filgrastim Injections to take proactively, last cycle I got them reactively when my neutrophil levels dropped very low. That might make the next week a little more challenging as we suspected it was those causing some of the tiredness, but the plus side is that it will leave me far less prone to infections.

We picked up some key supplies from Tesco on the way home, in particular Pizza for tea which I walloped down as usual. Now it’s just some sofa time (sitting picking the remains of my beard stubble out) before an early night tonight, a few days rest until weekend and see how Cycle 2 starts to pan out…

Tuesday 29th January 2019
“Nothing trumps good conversation” — Rich Eisen

I managed to stay awake until about 10.40pm last night, hoping the later I go to bed, the better I’d sleep at night. My drip would finish about 1.30am. 
Sleep was a problem last time so I was conscious of this.

I dropped off, but then at about 11pm, they decided to move the Irish chap with the extended family of visitors earlier on, to another ward as he was unwell and needed more care.  From behind my curtain this sounded like 10 nurses, talking loudly like it was midday, and crinking several plastic bags for at least 15 minutes. A necessary but just badly timed commotion.

Anyhoo, I dropped off again about midnight until 1.30am when Bob beeped to say my IV finished, the nurse unhooked me and took my observations. I went for an obligatory pee and then I was wide awake, like I’d drunk seven coffees wide awake.  It didn’t help that the poorly chap next to me was coughing up what sounded like litres of phlegm all night. I had to put headphones on with music to drown that out. I recall it was way after 3am before I dropped off again, and then I was up at 6am. Lights on and breakfast is 8am.

Surprisingly I haven’t been too tired today.  Not having people to chat to has made the day drag a lot more than last time though. I had breakfast, then waited to see the Doctor. Before the Dr was due, I went to the shower. I’d been dying to get in because my hair has been falling out at a rate of knots, I’m covered in it. Despite it being shaved to a number 1, so much came out that it clogged the shower! It’s my head and beard shedding. Now I have a kind of patchy mess, and am almost starting to look like you might expect a cancer patient to look.

All well with the Dr when he arrived, green light for chemo to start a bit earlier. Then I walked to get a latte, and sat and tinkered on YouTube etc watching some US Late Show comedy to pass the time. Then lunch, and then I watched “The Gunman” which was a good film.

Chemo started about 1pm, and is due to finish around 11.10pm (I’m on my last bag as I write this) which is great because I won’t be woken to be unhooked. Today’s regime was slightly longer incorporating the Bleomycin that usually messes with my lungs a bit:

• 0.5 Litres of Bleomycin over 30 minutes, chemo
• 1 Litre of fluid with Etoposide over an hour, chemo
• 1 Litre of fluid with Cisplatin (Platinum) over 2 hours, chemo
• 1 Litre of fluid with Cisplatin (Platinum) over 2 hours, chemo
• 1 Litre of fluid with Magnesium over 4 hours. Replenishment of salts

During this time, the other 2 beds had emptied and I was on my own expecting new roommates. I’d still not had a single conversation with either of them, each for their own reasons. One simply couldn’t talk very loudly.

Towards the end of my film, Mike arrived and my day has changed significantly.  Mike is fantastic company, super chatty from the word go. We also have Andy who is quiet and sleepy, has recently been being sick, and another chap who doesn’t speak English but we communicate with smiles having asked his relatives about how he’s doing. He started chemo in May 2018 and is still going !!

Things were fun chatting away with Mike in-between his work phone calls, but then his family turned up and things got turned up a notch. What great people ! His wife Bernette was just as chatty, a lovely person, telling me how she was on a TV show Strictly Kosher and has since been on daytime TV like Loose Women.  Then she was feeding us Jam Tarts.  It was like being dropped into a sitcom at points, greatly entertaining 🙂

A little later some chaps turned up to visit him and we have been huddled around my laptop watching Man U vs Burnley.  What a difference it makes to have great company.  The second half of my day has absolutely flown by, in a good way.

In terms of how I feel, still no effects from the chemo, other than the regular toilet trips. No cough or tight chest as of yet. I’ve tried to be up and walking about with Bob as much as I can. I’ve been reading up about steroids and two side effects I seem have are difficulty sleeping while I’m here, so I don’t expect to sleep well again tonight. Secondly my appetite, it’s still high and all the Dr’s and nurses I tell blame the steroids.

Hoping for a decent run at some sleep tonight, the only thing I’ll need to get out of bed for is to go and pee (without Bob 🙂 ) a few times, so fingers crossed. I expect another chunk of hair will fall out tomorrow too, I do hope so because it’s still sore in places. Then just the 1 hour of chemo and 4 hours of salts tomorrow, and I have the added bonus that Jayne will be with me for a few hours company before whisking me off home for a well looked forward to night sleeping in my own bed.

Monday 28th January 2019
“The spectacles of experience; through them you will see clearly a second 
time” — Henrik Ibsen

The 6am alarm marked Day 1 of Cycle 2. Bag packed last night, it was just a case of getting ready, getting the kids ready and scoffing a few weetabix. Jayne dropped me at the hospital about 8am, an hour early.

Having done this once already, and having not had a lot of trouble with the 3 day inpatient stay, I rocked up feeling pretty positive and confident for the next 3 days. Very much “let’s get this done and out of the way.” I knew what to expect and I was prepared, the worst part is the boredom. I wandered to the admissions unit and they saw me straight away despite being early, the same chap from Cycle 1 Day 1 putting my cannula in and taking blood.

By his own admission, the cannula had a chance of not working. I never knew but when they push the needle in your vein, if it hits a valve the cannula pops back out. This happened, strange phenomenon, it was about half way in but working ok and pushed out enough blood for the tests. Would it work later on ? Tune in to find out.

I saw the Dr’s. As I’d got in early, blood results were back early too and my bloods were still ok. My neutrophils (read immune system) had dropped from 30 to 15 but to be expected, and they were looking for a figure above 2. A week last Friday they were 0.1. So all good to go with the chemo, and then it was a wait for a bed. The call came about 10.30am ish, last time it was closer to 1.30pm. Just in time to order lunch 🙂

Back up to ward 11, and I am coincidentally in the bed opposite to the one I was in three weeks ago, where John was. The room is far less lively this time. Despite trying, I still haven’t managed eye contact with 2 of the guys in here, and the other seems quite ill and constantly surrounded by lots and lots of different family members, a constant stream. In related news, my new noise cancelling headphones have had a lot of use already and do a superb job. Awesome purchase. I’ve spent the whole day so far on the internet / playing games & listening to music / my audiobook.

The chemo was a little late to the party again and arrived about 2.30pm, although compared to 5.30pm last time I am ahead of that schedule. I fell asleep listening to my audiobook while waiting, so I’ll have to trace back to the point I nodded off. After the steroids and anti sickness tablets, today is:

• 1 Litre of fluid with Etoposide over an hour, chemo
• 1 Litre of fluid with Cisplatin (Platinum) over 2 hours, chemo
• 1 Litre of fluid with Cisplatin (Platinum) over 2 hours, chemo
• 1 Litre of fluid with Magnesium over 5 1/2 hours. Replenishment of salts

Taking into account time taken to swap bags over, that’s just over 11 straight hours hooked up to Bob (the IV pump) and 4 litres of fluid, not including what I drink, and drinking lots is encouraged to help the kidneys. Back to hourly trips to pee in a cardboard bottle, taking Bob along each time. Fluids in are measured, Fluids out are measured, to ensure you are not retaining fluid, in which case treatment is given. Either way I’m a slave to Bob until the wee hours (pardon the pun) until about 1.30am.

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Just going back to the 50/50 cannula in my arm. It didn’t work 😦 So the nurse took it out and went to put a new one in. Attempt 1, no blood 😦 Attempt 2, barely any blood 😦 She was super apologetic, but to be fair I couldn’t even see a vein so they have a tough job to start with, it can’t be helped. Apparently they can only try twice then have to get someone else to do it. Along came another nurse, who got it in on his first attempt, the 4th today. Ouch. Pin cushion. Quite possibly the worst albeit brief part of any visit for chemo, is when they remove the sticky plastic surround that holds the cannula in, ripping your arm hair as it goes. I got a bonus one today 😦

That’s it really for today. I’m about 4 hours in as I write this, no ill effects yet. Just a tiny bit of wooziness like last time, a weak case of the “room spinning” feeling of being overly intoxicated, although with all your faculties intact. I’ll watch stuff on my laptop to pass the time until lights out.

My appetite is still insatiable. I had a couple of weetabix for breakfast which admittedly wasn’t enough. Just before I got called for my bed, I had a meal deal from the WH Smith. An hour later, Irish stew & veg then crumble and custard. My stomach was rumbling an hour before tea, which was soup & bread, then pasta bolognese with cubed potatoes, and a cake. I am still very hungry. I’ll be asking for a sandwich or such like soon so I’m not hungry through the night. I can’t go walkies off the ward while I’m hooked up to a chemo bag (signposted by the mandatory yellow bag over the drip) in case it gets spilt. It’s dangerous stuff. Otherwise I’d go get something to snack on, and a latte. Vimto / water is getting old. I’ll wander in the morning before I get hooked up for that morning coffee.

Lastly, I bit the bullet and shaved the remains of my mohawk last night. Where the hair is long, it comes out easily because you touch it, it touches things like hats, pillows, sofa’s etc, loosens in the shower. It was extremely fragile. Where its been shaved, it doesn’t come out so easily because nothing catches it. I was worried if it kept falling out, I’d have a truly bald “runway” atop my head where the mohawk was, in-between 2 patches of stubble. Arguably more ridiculous than the mohawk itself. That’s why I shaved it. Now I feel like asking for “One Biiilllliioooon Dooooolllllarrrsss…”

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Sunday 27th January 2019
“You cannot escape the responsibility of tomorrow by evading it today” — Abraham Lincoln

Short one today…

Slept until 9am again, haven’t felt like much other than sitting on the sofa, I’ve done a fair bit of that. Hair continues to fall out, seriously considering shaving off the top bit later today so it doesn’t go really patchy while I’m in hospital.

Last year Jayne had got us tickets to the velodrome for the UK Championships for my birthday, and when we found out I’d be having chemo we were unsure I’d be able to go. It was a 5+ hour session, but we just went for the last 2 to 3 hours, it was great to get out and enjoy ourselves again, the day before cycle 2. A brief bit of time to ourselves without the kids.

Once home, a nice family meal followed by time to pack my bag. I kinda took the kitchen sink last time, this time I’ve refined my packing to keep the bag a bit lighter.

Notable additions: Shorts, the hospital is boiling most of the time. Hat, for travel to and from, head gets cold with no hair. Noice cancelling headphones, recently bought, hoping will aid sleep by cancelling out beeping and snoring etc. Indigestion tablets, chemo seems to give me a little heartburn. My litre water bottle, so I can track my water intake better.

Notable omissions: Dressing gown, no need because the hospital is boiling, also takes up 50% of my bag. Towel, no need as they are provided. Food and snacks, the hospital food is great and I’m still getting tubby. Wallet, literally everything in the hospital is contactless so I’m just taking my card.

Early start tomorrow. Bring on cycle 2…