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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…
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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…
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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…
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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.
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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…
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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…
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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…
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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…
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I don’t remember what we spoke about leaving the hospital. I just remember saying over and over “that’s big, really big” and the numbers, 10 to 12cm rushing round my head. It didn’t seem real. I had convinced myself that it was a Pheo and with no size indication until this point I just hadn’t even realised…
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It wasn’t long, and the appointment to meet with the endocrinologist was just days away. I was feeling slightly apprehensive, it just felt so uncertain, so unknown. It was scary to be honest. Id also begun to recognise since my appointment quite how often my heart would race. This wasn’t even when I exserted myself, sometimes I would just…
The ACC diary 