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  • The intensive care recovery ward is all a bit of a blur, I was still heavily sedated, and at that point wasn’t in any pain. That epidural was certainly doing its job!! I had an oxygen nasal tube and the canula still in my hand. For a while I was drifting in and out of…

  • So a very short post today. It’s been a heck of a week, full of appointments. But I have two bits of positivity to share. 1. Last week I went bowling with my team again! Didn’t do too badly either – scoring 4 spares over the 2 games. I need to get some more games…

  • Rare disease day is on the rarest day, February  29th, there is a lot to be said about living with a rare disease and unsurprisingly, its not entirely a positive experience. ACC is classified as a rare disease, 1 in 1 million people will be diagnosed with ACC annually, and probably, like myself, pre-diagnosis there…

  • I left the appointment and all hat I could think was how soon that was. My mum kept reassuring me that it was a good thing, that I wouldn’t have time to think, and I knew she was right. I am very good at overthinking and worrying, so the less time I have to do…

  • We arrived on the ward and checked in, took our seats and waited. While we were waiting we started to come up with some sort of plan, devising a little bit of an action plan, what would we do between now and surgery. Trying to figure out   how much time we had, in our heads…

  • today, Sunday 11th February I have ticked off one of my goals, I walked for just over 1  ¾  miles, at a steady pace and without pain. I could have gone further, but the rain decided to join us! I’m happy with myself, and look forward to ticking off my next goal.

  • The ward was so very busy that day, the waiting room was full and people were rushing back and forth hurriedly trying to get things done in a timely manner. I’m not sure if it was the stress getting to me, but I felt like I was seeing all the goings on through a weird…

  • Today, February 4th is world cancer day. So, I thought I would talk a little bit about one of the things that make me particularly uncomfortable when the topic of cancer is brought up. Two years of chemo as a kid, living with a disability and now another road of treatment ahead is something I…

  • It was now just a couple of days until my scan results. I think by that point I had fully braced myself that the likelihood of this being cancer was more likely thatn not. This was hard. If I was right, and this was cancer  that could mean chemo, and that was something I wasn’t sure I was willing to…

  • I was just leaving the bank, when the phone rang, it was the hospital. They had my scan date. It was to be the following day. With anything like this you just grab the appointment short notice or not! I have  had lots of MRI scans before, but was warned that PET scans were very…