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…