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.