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…