MTCJ — 6 May 2022

Today is a day of ups and downs. The upsides — there are several:

• My boys came to see me today in hospital! What a pleasure, haven’t seen them since Monday morning, and they give me so much love and compassion! It did me a world of good!
• I get to go home tonight! Yay! (That is, if there is no further delay with the remaining post med hydration being pumped into me, port needle removed, and me feeling OK to leave.) I’m confident!
• I have my last pack of chemo meds behind me for this cycle. That doesn’t mean I’m immediately feeling better, but it’s a good feeling nevertheless.
• I have 2 weeks of no chemo ahead of me! And chances are I will start feeling better again in the coming days.
• Also, the nausea is slightly less now, and I’ve been able to eat and drink fairly decent amounts, without feeling sick

I still feel quite poorly, very tired, and the thought of having to go through this same $#!+ 3 more times, each time likely to feel more poorly, is creeping in. OK, stop thinking that, focus on the positive!

The other challenge is that what I didn’t want to happen is happening now — this disease is taking over my life. Morning to night, everything is about cancer and chemo. I had to cancel the sports oncologist this morning. She was due to come and do a few exercises with me this morning, but I simply wasn’t up for it, as a leaden tiredness was weighing me down. I barely managed to do my 20 minute morning walk up and down the corridor.

Stepping back a few hours: I woke up at 3am, feeling nauseous. I tried to focus on something positive, but didn’t manage. I wanted the night to end, but I didn’t want the day to begin. I wanted to eat, but then again I couldn’t bear the thought of food (or drink, for that matter). I wasn’t looking forward to getting up, even being able to walk around without being attached to the drip I have to wheel around with me all day long. I wasn’t looking forward to the daily routine of 12 hours of drip. I wasn’t looking forward to writing this blog. Reading, TV, games on my phone, social media — none of that sounded remotely appealing. I felt hopeless! 3am is not a good time to be awake in a hospital room.

Eventually I remembered that I had some throat lozenges from years ago stored in the pouch I had brought, and that they can help against nausea. And indeed, there they were, and they helped me go back to sleep. Still, the morning brought little relief. Just another day of being attached to the drip all day long, battling fatigue, nausea and boredom.

I realise now that I’m fed up of everything being about my situation. I want to talk less and less about how I feel, and more about what other people are doing. I guess it’s a way of avoiding my whole life becoming about this disease, and trying to participate in the “real” life out there. My patience is wearing thin, my concentration span short, but with what little I can muster, I enjoy hearing my wife tell me about her day. And for the same reason, I want to go home tonight, come what may! Home, a life a little bit more normal, other things going on than the daily routine of changing the drip, being served the same food, wheeling my little trolly to the bathroom and back, and staring at screens to distract myself.

Cycle one is almost complete, now come 2 weeks of rest. I wonder how much longer I will feel the side effects. But most importantly, the prospect of going home gives me a new outlook on life, at least for 2 weeks. What comes after that can wait!