Say Something.

Sorry for the obvious post title. I’m still here, still wholeheartedly wanting to blog, but I’ve been trying too hard. Drafting posts that take too much energy for me to muster. Too many images, too many links. I’ve got loads to tell you but I’ve been overcomplicating things. I’ll keep this one simple.

I started the second phase of treatment on 20th April. The first cycle of chemo has been OK so far. I’m tired but it’s hard to know if that’s a hangover from the 6.5 weeks of chemo and radiotherapy in February and March or caused by physical exertion on days I try to do a bit too much. Probably all three.

I’ll be MRI scanned on 16th May and this one feels quite important. It’s the first time we’ll know what effect the first phase of treatment has had. My consultant was positive in April that because I have responded so well to the treatment so far (I haven’t felt that unwell, just tired, and my blood counts have all remained stable) that we can be reasonably hopeful. I am.

The title of this post was prompted by me recently thinking a lot about a holiday in summer 2007. Benicàssim Festival > Toulouse > Andorra > Paris.  On the long drives we only had one CD to listen to. The Best of James. I was just 20 years old, about to start a Fine Art degree and like most 20 year olds excited for what the future might hold. 

I'm sharing 10 things I've been doing, learning and feeling recently below. Some are admittedly more exciting than others but then it's all relative, isn’t it?

  1. This week I walked on a treadmill. Amazingly on a treadmill I can walk a million times better, with a more normal gait. Crazy! The physio team think it’s because the treadmill gives my brain feedback due to it moving, so this prompts the brain to fire the signals about moving my left leg. It’s not that I’m lazy on firm ground, but due to reduced sensation in the leg and foot the ground doesn’t talk to me quite as much as the treadmill does. Harnesses were available in case I fell off but I thought risking it without might be more fun.
  2. The Felden Krais method (recommended by my physiotherapist) is like mindfulness with movement. I've been doing some of the free podcasts - not sure if it's making a difference, but I like it. Good for relaxation.
  3. Seizures come in all shapes and sizes. There’s the ones I’ve known I’ve been having regularly and then the not sure what ‘it’ is, or even if it mattered sensations in my left leg. I now know that ‘it’ is a sensory seizure. The Keppra has been increased again and a second drug prescribed to take at night if they continue. I don’t really like the sound of Clobazam so am holding off taking it for now.
  4. Every increase means a conversation with my GP and a trip to the chemist but this week I discovered I can get my prescriptions delivered to me. For. Free. Why didn't I sort this out sooner? No more Ubers to the chemist. Time and money saved!
  5. Uber is everything. Always has been, but even more so now.
  6. Life admin is a job in itself. I now have so much health related correspondence from various hospitals that I’ve had to set up a full-on ‘health related’ filing system. It took half a day, no less.
  7. Talking to other people in the same boat helps.  I’ve been talking to other patients at the Neuro/Stroke circuits class and in particular, one with similar credentials to me (only a few years older, city centre dweller, similarly busy job before) and despite different causes (stroke), our physical problems are really similar. Left side weakness, foot drop. Similar walking ‘style’. We can share tips too: I’ve just ordered a foldable walking stick from Amazon, having tried out his.
  8. It's great not to have to dry my hair now I'm a proud baldie. I'm also saving the £50 a month I used to spend getting it done. Sorry, Steve.
  9. Being off work gets boring… and lonely at times. As does telling your partner what you’ve done that day. Erm, the dishwasher. Yeah, the dishwasher.
  10. I'm a bit of an Instafiend (if that's not a thing, it is now!!) and do most of my posting on there. You can follow me for all the best updates about what I'm wearing, eating and putting on my face. Important stuff.

Sar x