Tuesday 15th January 2019
“I would never win an award for not loving pizza” — Dwayne Johnson

So I made it into work today and did a reasonable amount of hours. Took it easy by going in a bit later than normal and working a standard length day, and by all accounts made it through unscathed. A pal of mine at work has sorted me out a basement parking space for a few weeks so it’s only about 100 steps from the car, up the lift to my desk. I owe him one for that. Although the commute, which I’m used to covering in 25mins on my bike was about 50mins each way. I don’t miss being a rush hour driver, but needs must.

I started off quite tired, although a coffee or two pepped me up. I’d had my 4 weetabix for breakfast, and took a bag full of sandwiches with me to keep up with this relentless appetite I have developed in the last few days. Through most of the day I plodded through some work at my desk, then finished the day hosting a meeting. I felt good. Had a laugh with a colleague about being totally out of breath having walked up 2 lots of stairs to go to a meeting room, and needing a minute to get my breath back. It still amuses me how it can happen !

By the time I got home, I felt a little drained but at no point have I felt as bad as I did yesterday. I thought it best to reward myself (and the boys) with some yummy food, for having managed the day well. Pizza & Burgers promptly arrived around 7pm, and we sat and filled our faces with some delicious dishes. I might have eaten a double cheeseburger and half (or more) of a 16′ pizza, such is this appetite I’ve developed. Since eating I’ve been perky, no feelings of needing to nap at any point really.

A couple of people looking out for me have quite rightly questioned my choice to go back into the office, and you wouldn’t be doing your job if you didn’t! As I’ve said before, whilst the obvious battle here is physical, you forget how much of it is mental too. The last thing I need is to be in the hospital on an antibiotic drip for a few days because I caught a bug, or potentially worse, I agree. But equally the last thing I need as a good friend eloquently puts it, is to be at home “wallowing in self pity” at the whole ordeal. I’ve struggled in the past with my mental health, but over the years I have become really quite resilient. I manage these things by taking them in my stride and simply getting on with things. I don’t do well at home, alone, with not a lot to do but be ill. I was the same in 2016 after breaking my collarbone, in early 2018 after suffering a spontaneous collapsed lung, and in October after my operation. You can’t keep me down, that’s me.

That means the plan for the rest of the week is to spend another sensibly timed day in the office tomorrow, back to working from home on Thursday before chemo day on Friday at The Christie. I’m still taking it day by day but it’s panning out well. Pizza of course, helps.

Monday 14th January 2019
“Boy, that escalated quickly. I mean, that really got out of hand fast.” — Ron Burgundy

Some progress down the slippery slope today !

Firstly, I didn’t get the best nights sleep. I went to bed a bit later than I’d have hoped, and had took a gamble on taking another laxative before bed. I’ve spent the last 16 hours regretting that decision! Either that did it or I picked up a stomach bug. Anyhow, that affected my sleep a few times, and all day today. It was also the first day I’ve come across an early morning alarm clock.

I helped Jayne get the kids ready for school, then logged on to work for the day from home as planned. All fairly standard stuff, catching up on what I’d missed last week whilst in hospital and off work. However, by 10.30am, I was desperately struggling to stay awake. I boiled the kettle, made a brew and took in some caffeine. This process alone was exhausting, and I found my body telling me to grab a seat while the kettle boiled, instead of standing up to wait, such was the exhaustion.

This went in cycles all day really. The brew perked me up. A bit later I felt tired again so wandered around for food or drink, which was an exhausting affair, etc etc. At points, the struggle to stay awake was real. Yesterday, being physical killed me off, today just sitting and being conscious has been doing the same. Nevertheless, I plodded on and made it to about 4.30pm before I had to throw in the towel. I’d have gone to sleep immediately but dad duties kicked in. After making tea for Parker and a few other bits and bobs, I finally made it to my bed about 6pm to catch up on a bit of sleep. Out like a light ! I really wanted to avoid napping, as I worry I won’t sleep at night now, but even after that nap today I’m still pretty wiped out and I’m hoping that won’t be a problem.

Maybe I do have a stomach bug which is draining extra energy, maybe this is just how it should be. Maybe starting from a point of not having had as much sleep as I have been doing, and broken sleep at that, made today worse than it seemed. I’d still consider myself pretty lucky to have got this far and only really have simple fatigue as the major impact. I’m still finding my feet.

I have noticed over the last 48 hours some tinnitus. It’s not permanent, but that sudden onset of a high pitched beeping noise that sometimes greets you is certainly becoming a regular occurrence, but not the worst thing to put up with.

I’m going into the office tomorrow, lets see how that goes. I’m in the hugely fortunate position that I am under no pressure to do the work thing, I’ve been told my health comes first and foremost, and that the place will still be there when I’m through all this. There are far less fortunate people out there who don’t get sick pay, and need to work through this to continue to make ends meet, I can’t imagine the stress that adds. What it does though is motivate me to keep going in a way. I like my job, it’s a challenge ! What else will I fill my days with ? Mentally I’m still all there, and boredom has often been my enemy. If it doesn’t work out, the support is there.

I will of course stay out of the way of anyone who is ill, working sensible hours, not be shaking hands with anyone (no germs thanks) and be using frequent squirts of alcohol gel. My primary task is not to catch anything.

Sunday 13th January 2019
“To enjoy the glow of good health you must exercise, ” — Gene Tunney

Sunday was much like Saturday in that we had a fairly quiet day. I didn’t sleep so well, not because of the treatment, but it meant I was grateful to lie-in bed until about 10am again. I sound like a broken record, but I woke feeling pretty normal again. Bit of a cough, laxatives starting to work, temperature normal, still no nausea.

I’ve still been staying “active” to a point, not wanting to down tools completely. We went to Sainsbury’s & Asda at lunchtime to get some bits and bobs, and I started to notice getting tired now from some pretty basic things. I’m usually 10 paces ahead across the car park shouting at the kids to keep up, but today I was lagging. I hadn’t had any breakfast for a start, which was a bad move and I could tell I needed fuel. However, just walking around the shops was a little bit of an effort. It was a welcome break, having a sit down when Luke tried on some school pants. Same again when I got home.

Again I jogged upstairs and back down quickly without thinking, and my heart rate shot up to 170bpm, which is normally the heart rate equivalent of a decent effort up a 7% hill on my bike. Later on again, I was taking the washing down and then taking some upstairs, and I needed a minute to sit down. It’s a sign of the treatment reaching another stage, not to say I feel bad because of it, but I need to adjust. I simply don’t have as many blood cells to keep things going and I’m at that point now where I will limit being physical. I’ve got away with it quite well so far.

There are lessons learnt today from when and how I ate, I didn’t eat well or regularly enough and maybe I’d have been a little bit better off if I’d fuelled myself better.

The plan tomorrow is to work from home, 1st day back, I’ll welcome the mental stimulation to be honest. All being well I’ll get 4 days work done Monday to Thursday, then back in hospital on Friday for my first post-chemo blood tests, a chat with the consultant and another shot of Bleomycin. 1 week down, 8 more to go.

Saturday 12th January 2019
“I’m lucky I’ve been able to spend a lot of time with my family” — James Fox

Another relatively uneventful day along the lines of the chemo treatment / side effects. I woke up and checked my temperature, which has been normal again all day. I slept well, felt refreshed and ready for the day. Appetite, thirst etc all still there. Taste seems to be returning to something closer to normal.

It’s strange waking up on a Saturday with no real weekend plans, and trying to figure out how to pass the time based on the restrictions of trying not to get ill or exert yourself. I am missing bike riding (of course!), although not as much as I thought I would as I think mentally it’s not even in my head as a remote possibility. My family were due to visit but again my uncle, and my small nephew have a cold so we cancelled that visit to us.

The plus side was, we sat in watching a few movies with the kids, sat and played games, things we ordinarily wouldn’t have done as a family, or not as much of. It doesn’t help that the weather was really quite blustery and unwelcoming outside, and only set to get worse tomorrow, as we’d planned to go for a walk too but that didn’t happen.

I’ve finished the last of the medication I was sent away from the hospital with, now I just have a box of anti-sickness tablets to take “as required” which so far they have not been. I haven’t felt the tiniest bit sick at any point this far, which I am very pleased about. I’ve read about others who have really struggled with sickness, then struggled to eat / drink, and get into a real mess without the right nutrition and therefore energy levels. Long may this lack of nausea continue !

I did have a slight chesty cough which I noticed on the Wednesday before leaving hospital, I’ve been coughing today seemingly to clear some phlegm. Later in the afternoon after a bit of coughing, my chest tightened up a little and I paid a lot of attention to how it was feeling. As a chemo patient, I have a hotline to The Christie where if in doubt about anything, 24 hours a day I need to call them and discuss things. This could result in some advice, an instruction to go to see them, or a trip to the nearest A&E. This cough has no other symptoms, and hasn’t done since Wednesday, so for now I’ll wait and see. If it progresses then I’ll get advice, as with anything else that emerges.

Again, I had intentions that other folks going through BEP could read this and get another person’s point of view on everything, so I apologise again for saying that bowel movements are not as regular and causing s a little discomfort. I haven’t found a rhythm with the (self bought) medication yet, let alone know if it’s the right one. I’ll speak to the hospital about it next Friday if it’s still an issue. For now though, I’m increasing my fibre intake and staying vigilant to my fluid intakes / hydration.

Other than that, it’s day 7 tomorrow. My nurse warned me that day’s 7 to 10 are “where it will hit you hardest.” Whether I notice the physical symptoms or not, I need to be mindful that my body will be at it’s lowest point – low blood counts, immune system etc. Another good reason to take it easy again and enjoy some more family time.

Friday 11th January 2019
“Anyone can have a good day, but you have to be able to perform on a bad day” — Jurgen Klopp

Not a great deal to say today to be honest. I consider myself really lucky that again for most of today I feel relatively normal. 7.30am get up, walked the kids to school, no issue. Sat down on the sofa when I got home, and 20% of me felt like a nap. Promptly ignored, I headed out to the supermarket to stock up on a few things.

Back to the medical side of things, no sickness at all so far, not even a slight feeling of nausea. Appetite still all there. My taste is still weird, I couldn’t really taste the sugar on a Morrisons Donut (my personal fave) earlier. No mouth ulcers / sores which I believe are again a matter of time, but I got some mouthwash ahead of time to try and stave these off as long as possible. Other blogs suggested that laxatives may be required at some point, and I’m starting to notice a need potentially, so bought some to be prepared. Sorry if too much info ! Best to attack this one proactively than suffer discomfort.

General energy levels still seem ok, I’ve had quite an active day and at about 6pm, my eyes feel a little sleepy, not quite enough for a nap. One bizarre thing though, in the past I have suffered year on year with bad tonsillitis that puts me in bed for a week. My tonsils have always been really big and I’ve always thought that has been a contributor. However, when I checked them earlier (through sheer paranoia) to make sure I’m not getting a sore throat or similar, randomly since the chemo they have shrunk considerably ! That would be a win in my book !

I’d got a snazzy ear thermometer from Amazon which has turned out to be rubbish, so I returned it and picked up a bobby basic one today which does the trick. Temperature checked regularly today, always around 36.7 to 37.1 so that’s good news. I’ve finished my steroids and anti-sickness tablets today, but I also decided to pick up some Vitamin C and Multivitamin tablets to try and help my body out while it will be struggling. No harm in trying, whatever your opinion of them is.

Dad came round for a brew and we had a good chat for an hour or so, he went through the decontamination process on the way in 🙂 My sister was due round too but my very young nephew has developed a cold so we knocked that on the head. I even managed to put up some new curtains for Jayne and fix the curtain pole, some housework too.

I’m still waiting for this slippery slide to come. Maybe I’ll wake up tomorrow feeling like I’ve run a marathon after being quite active today. Maybe not and it’s still a few days away. My plan was to start back at work on Monday (from home), I’m lucky in that I can work from home so at this point I don’t see why that won’t be the case, although I’m under no pressure there. I need some mental stimulation, boredom had already kicked in today at points. I’ve had my head in work emails at points in the week, just to see what’s been going on.

But for now, I have the conundrum of how to enjoy my weekend without being too bored whilst being on “reduced duties.” It’s not a bad problem to have…

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

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

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

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

• 

• 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Finally, taxi for Evans !

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sunday 6th January 2019

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

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

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

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

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

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