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…

Saturday 26th January 2019
“I pick my favourite quotations and store them in my mind as ready armour, offensive or defensive, amid the struggle of this turbulent existence.” — Robert Burns

I am acutely aware that this blog is talking a lot about sleep recently, but sleep seems to be dominating things now and has done for a lot of week 3. I’d resisted the daytime naps until recently, although yesterday I had a much needed 2 and a half hour nap. Even so, I still managed about 9 and a half hours sleep last night.

My hair is weirdly sore. Where it’s shaved short, it hurts when I rest my head on something like the sofa, kinda like little needles in my scalp. Where it’s long and I run my fingers through it, it’s sore too. Must be something to do with it dying off. Anyhow, the mohawk remains, but a fair bit of it had fallen out at the back overnight so it was time to shave it off this morning. I mostly did it myself and Jayne tidied it up for me, it’s just a bit patchy now. Still clinging on to the rest…

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My just giving page topped £1,000 today, which I am utterly thrilled about. Thanks again to everyone that’s contributed.

We had a fairly quiet day, went to Ikea about midday for a wander around. 20 meatballs and chips to fuel the trip around ! Although, by the time we got to the marketplace but where all the interesting junk is, I was knackered and the trolley was basically propping me up until we got back the car. Jayne wanted to get some things to build Parker a sweet shop, I helped her build it when we got back and he’s looking good with it although it’s not finished.

Other than having a headache and being generally tired and lacking energy again, I’ve felt fine today. The cough lingers on again but nothing too troubling.

After sitting at the table to eat as a family, we decided to watch a movie, but for me it was nap time. I’d been fighting it again most of the afternoon, but from 7pm until about 8.30pm I was wiped out on the sofa while they watched the movie. Not much else to share on a fairly (deliberately) quiet day.

Trip to Chester for pancakes and company tomorrow with the kids, then off to watch some cycling at the velodrome. Then it’s a case of getting a bag packed for Monday and having an early night.

Friday 25th January 2019
“As long as there are games to play it is not over.” — Sir Alex Ferguson

Today marks the last treatment for Cycle 1, I’ve now had one third of the chemo I am due to have. There are two more 3 week cycles to go, with Cycle 2 starting on Monday. 2 days of rest remain of Cycle 1.

There was an unwelcome 6.30am alarm today, to get to the hospital on time. I needed to be there for 9.20am but Jayne dropped me before work so I was there about 8.25am. I didn’t have to take a ticket and give a blood sample today, given they were there taken on Wednesday and all fine. One less bruise today.

On that note, my right arm is full of bruises. You’d be forgiven for seeing an arm full of bruises & needle marks and the bad boy haircut and mistaking me for a junkie.

Same Friday drill, see the Dr to get the ok for chemo, have a chat about how I’ve been. No real issues today, we already knew bloods were fine. I know I’ve been feeling crappy because of Monday and the Filgrastim injections. I actually felt a bit more spritely this morning compared to the rest of the week. All good for chemo.

Having forgotten to ask on Wednesday, I asked what the infection turned out to be and whether the chest X-Ray was ok. The X-Ray was fine, they spotted my 2-piece healed collarbone on there from 2 years ago. There was evidence of Rotavirus on my swabs, that’s a sickness/diahorrea type virus. Maybe it was that in week 2 causing my toilet trips. Otherwise, it was likely a combination of factors. The main thing we’re interested in is not what it was so much, but that it was dealt with and is no longer a threat. I also gave the obligatory explanation around my haircut and it got a giggle and a well done.

Next order of business, full English breakfast in the hospital restaurant. Tick. Off to the chemo ward for my 10.30am session, waiting for the phone call to go and take my chair, which was also reasonably timely compared to last week. I tried to describe the chemo suite last week, it was fairly quiet this week so I didn’t mind taking a picture.

You get a comfy leather electric recliner, there’s free wifi in most places in the hospital including here so you can use your electronics. Brews on offer, food if you are there at the right time, music playing. Yeah it’s a bit depressing knowing why people are there and being lined up together, but they do a great job of making a comfortable and relaxing environment for you. For it’s purpose, it’s a great facility.

There were only 2 others nearby hooked up, both there a lot longer than me. Only one more arrived while I was there. The drill here is becoming more familiar too. Get the cannula in, first put some steroids in, flush it through with a little saline. Put the chemo through, it was about 15 mins late today so a brief wait. Bob the pump takes half an hour to put the Bleomycin through, and then another 10 minutes to flush some saline through. It’s then a case of having the cannula taken out, and then off home. All in all about an hour with no delays.

Dad picked me up again, I bought us fish and chips on the way home for lunch to say thank you, I indulged too. My sister came around with baby Xander, we all chatted until about 2.30pm which was nice.

I’d been struggling for a few hours feeling tired again, surprise surprise. I crawled into my bed about 2.45pm intending to sleep until 3.40pm when the boys would be dropped off. I slept through the 3.40pm alarm and the doorbell woke me up. I was absolutely dead to the world, mouth open, dribble, the works. I managed to get up, go downstairs, and I was that tired I struggled to keep conversation at the door.

I asked the boys very nicely to find something quiet to do quietly, and let me sleep, Jayne wouldn’t be back until around 5.30pm. They were great and grabbed their tablets and went in their rooms. I was out cold again, dribbling, and was fast asleep up until 5pm. I really needed that. I woke feeling pretty groggy, came round after about 10 minutes and then took them downstairs to begin our Friday evening. Jayne cooked their tea, I ordered Chinese food (have you been counting the calories) again through sheer lack of energy to get off the sofa. Now it’s Arsenal vs Man U while Jayne is out with her buddies for a meal, and then lots of rest.

It’s the third time I’ve had Bleomycin now. Days 2, 12 and 19. Each time, I’ve got a bit of a phlegmy cough reasonably quickly afterwards, and a little bit of a tight chest. No difference tonight, it usually passes fairly quickly. I’ll drink as much as I can again, to flush the system again and stay hydrated. Antibiotics finish today so I’ll also be medication free for the weekend. I still feel like I’ll sleep well tonight. Then the job this weekend is to recuperate as much as possible before Monday’s 3 day visit.

Thursday 24th January 2019
“Think what a better world it would be if we all, the whole world, had cookies and milk about three o’clock every afternoon and then lay down on our blankets for a nap.” — Barbara Jordan

All day today I have felt like having a nap. I woke up about 7.50am with the rest of the house, and I felt like a nap. Jayne and I drove the kids the half mile round trip to school, and when I got back I felt like a nap. I lazed around for a while, had some breakfast, and felt like a nap. You probably get the gist of it by now.

I drove the 0.1 mile trip to my dad’s house to pick some things up, and then home again. Tired. I had some lunch a while after midday, and then I decided it was nap time. I nodded off after 3pm, and maybe got 30 mins before the kids arrived home, then 2 delivery men ringing the doorbell. The noise made it impossible to sleep any more.

I came down and milled around with the kids for a while, made some glow in the dark gloop with Parker which he’s been dying to do, then made some tea for us while Jayne and Luke went out. Guess what, 6.30pm, curled up on the sofa with my eyes closed for 45 mins. Woke up, felt like a nap. And so on. Early night tonight ahead of chemo day tomorrow. I’ve got to be at The Christie for 9am so it’ll be a fairly early get up.

It was my last Filgrastim injection today, which I believe is still the source of me feeling so run down, so hopefully I’ll perk up. My appetite is still quite low, but I’m doing my best to eat regardless. Other than this tiredness, I feel pretty normal.

I forgot to share my blood results yesterday. Last Friday, my Neutrophil level was 0.1 and the Dr said they want to see a minimum of 1. This left me dangerously vulnerable to infections. The daily injections have been making my bone marrow do it’s job and produce more (and making my bones ache.) Yesterday, my blood results were looking for a Neutrophil count of between 2 and 7.5 as normal. My count was 31.7 !! I’m not sure how quickly that will decline with no more injections due and more chemo, but thats good news for now.

I continue to be blown away by the generosity I’ve seen on my JustGiving page, thanks again to everyone that has contributed. A special thanks to my old colleagues in the Fraud team. It’s about 4 and a half years since I worked there but they put in a sizeable donation as a collective which caught me massively and pleasantly by surprise. It’s at over £900 now, not bad considering I sold my hair off at £100 originally !

Final thing on the hair, I seriously considered dyeing it pink to add to the ridicule and further entertain you all, but this morning it was coming out at a faster rate of knots. I think if I try to dye it, it’ll just come out and I’ll end up with a thin and patchy mess in need of a full shave. I scratch my face, and my beard hair falls out !

I’ll keep it as is for now and happily tell the story of my awesome network of friends and family who have given so generously for a worthy cause. I’ll be massively proud to tell that story to any of the Dr’s or Nurses I come across tomorrow that are happy to listen.

I’m in tomorrow for a chat with the Dr and a shot of Bleomycin, then I need to get as much rest as possible until Monday when cycle 2 begins. I started Cycle 1 at 100% fitness/health. I won’t be starting cycle 2 at 100%, but I can try to get as close to 100% between now and Monday as is possible.

https://www.justgiving.com/fundraising/chemophil

Wednesday 23rd January 2019
“When you have a lot of success you don’t need vanity anymore” — Amelie Nothomb

I really didn’t do much yesterday in terms of physical activity, but my word was I tired by 9pm. I was ready to throw in the towel about 8pm, but managed to stay awake a few hours longer. Great sleep, I slept right through. I obviously wasn’t drinking enough because I didn’t need a night time pee !

With about 8 and a half hours sleep, I still woke feeling pretty groggy. I feel achey still, generally lacking energy and run down, and today I’ve not even felt like eating which is unusual. I didn’t do a lot in the morning, then headed off to the hospital for my check-in following Monday’s admission.

I got to the hospital sat in a chair in a small room with a few others and waited. A nurse came to take another blood sample to compare to those from the early hours of Monday morning, and then I had an hour or so wait until the results were available. I was a bit bored because it had been an hour and a half, and guess what – I needed to pee. So I wandered to the toilet, but half way, I bumped into the person coming to speak to me, a nurse I’d spoken to on Monday morning who seemed to be a right hand person to the Dr that assessed me.

We chatted in the corridor going back to my chair. She told me my bloods were now off the chart (very high) and were looking great. That meant I’m fine for my chemo on Friday, and also far less vulnerable right now to infections. She asked how I felt and I said achey and crappy, apparently that is as a result of the Filgrastim injections (belly jabs) that have helped my neutrophil levels to rise. They work the bone marrow quite hard and that is quite draining it would be seem. She asked if the aching was in my bones, and yeah it is. All makes sense now.

That was it, and off I went. I totally forgot to ask what the infection was that caused my fever on Monday, I’ll have to ask my Dr on Friday when I go in. As I’ve had my bloods done today, I don’t need to have them done on Friday so that cuts an hour off my visit. Plus, I’m starting to look like a junkie with all the bruises and needle marks on my right arm. One less needle on Friday.

I’ve felt tired, achey and crappy since I got home, again not feeling like I wanted to eat but I have made a point of doing. I just want my bed ! I doubt I’ll feel like working tomorrow, but if I feel up to it I’ll catch up on emails from home. Given I’m in on Friday, and then Mon/Tues/Weds for chemo again, I’m not going to risk anything tomorrow if I don’t feel like it.

Regarding haircuts. Firstly, it’s certainly not the weather for a Mohawk. I’ve never shaved my head before, and it was zero degrees celsius today, not a fantastic combination. Thankfully I have a collection of about 8 hats now, although I forgot to take one with me to the hospital.

Secondly, I’ve felt the need to explain to people why I currently look like a yob everywhere I go. I explained to the nurse why I looked different to Monday, and how much I’d raised for the hospital charity, she seemed impressed and suggested (as some others have) that I should go one step further and ask for more donations to dye it pink. Maybe pink looks less yobbish ? She also said she hadn’t even thought about my hair because it just looks like a “young persons haircut.” 🙂 Loving the compliment, but then as I’ve said before, in terms of age I’m certainly one of the odd ones out in that place.

Later when dropping Parker off at Otters at the church, I had to rearrange him getting invested for a week ahead as it was due for next Wednesday and I’ll be in hospital. I don’t want to miss that. I again felt the need to explain my appearance, except this time upon mentioning I raised £500 so far, the leader passed me £10 and said now its £510. Awesome !

No major hair fallout today, although it remains fragile and I need to stop accidentally (on purpose says Jayne) picking bits out. I’m still blown away from the generosity I’ve seen on my just giving page. £515 in a little over 24 hours for getting a daft haircut is amazing, and as a good friend said earlier, it shows just how much people think of me. I am truly and genuinely humbled. Who needs hair ?

Tuesday 22nd January 2019
“I don’t think there’s a public in the world who respond like the British to a call for charity” — Terry Wogan

I slept like a log last night thanks to resisting having a nap when I got home from hospital. Yes I had to get up twice to pee in the night, that goes without saying. I’m still drinking lots to flush the system. That said, it’s the codeine keeping the back pain at bay. I had some before bed, and needed it again when I woke up, although the pain is improving. The Solpadeine packet tells me I could be addicted after just 3 days. Today is day 2. I will be mindful of that !

I also woke about 2am in a bit of a sweaty state, clearly my body is still up to something, fighting off this infection. I thought it best to sleep on a towel and in a t-shirt in case it continued. Lovely.

The first order of business each day now is remembering to take a multitude of medications. Antibiotic 1, Antibiotic 2, painkillers, along with the vitamin c and multivitamins I’m proactively taking, and then the needle into my belly. Still 3 of them to go after today.

Today was all about rest. I’m still fighting the infection, I’m still tired from it and the less I do, the quicker it will pass. No work today, pure rest. I planned to just sit and do nothing most of the day, with a quick trip to the supermarket to pick up some necessary supplies like milk and bread. On the whole, that’s what I’ve done, and I haven’t felt up to much more at all. Roll on bed time…

I’m back at the hospital tomorrow to find out the results of all of yesterday’s tests, see what drugs I need to take ongoing, and hopefully get the OK for chemo on Friday.

However, in other news, this morning I looked like this, as chipper as ever…

You may recall I joked yesterday about going for a Mohawk before all my hair falls out. (Incidentally I pulled at some hair above my ear this morning and ended up with a small bald spot. It’s really happening. I am also one of the chemo patients putting on weight, they weigh you a lot and I notice it’s a consistent upward trajectory, note the 2nd chin appearing.)

Well, I woke up to a good friend having posted on my facebook timeline suggesting a £20 donation for charity if I do the mohawk, already sporting comments from others also willing to donate. In hindsight, I sold myself out a bit too cheaply, agreeing to get it done tomorrow if I got £100. I setup a justgiving page, which I was due to do at some point to raise money for The Christie through my September bike ride. I then posted it to facebook, and it was less than an hour before we hit £100 !

Given I’d pulled a big chunk of hair out already, I thought to be fair I’d wander to the hairdressers today. It’s not hard sitting in a chair for 20 minutes for a good cause, I could always nap afterwards 🙂 I wasn’t sure if there would be enough hair left tomorrow, and now there was charity money on the line ! So here I am…

I have no idea how long it will last before it falls out. I was actually bricking it in the hairdressers chair, I can’t tell you how much I’ve been dreading parting with my hair. Quite trivial in the context of other things that could go wrong. It’s not really “Job Appropriate” either but I’m currently sidelined from work with the infection, at best I’ll work from home and with 4 days of chemo coming up, the mohawk will never see the office.

The best thing by far though is that Sue’s initial £20 pledge has already morphed into £335 for a fantastic cause. That’s one third of what I was hoping to raise in the whole of 2019. I’ve done a lot of fundraising over the years, but this was one of the simplest things I’ve ever done. Sue, I raise a Peroni to you !

A huge thanks to those who have donated so far, you are all amazing. A huge thanks in advance if you decide to contribute too, you are also amazing. And not forgetting those of you who would like to contribute but for one reason or another you can’t, or you already donate elsewhere. That’s great too ! (Maybe don a mohawk instead.)

The Christie is an amazing place, and as I’ve said on my fundraising page, bluntly, it’s keeping me alive. This feels like the least I can do… and it’s far easier than lugging my fat ass and 2nd chin around 100 miles of hills is going to be in September…

https://www.justgiving.com/fundraising/chemophil