Claire has post surgical hypoparathyroidism following a thyroidectomy for thyroid cancer
Claire had surgery in early 2009. When the result came back that she had thyroid cancer she had a second operation to remove the rest of her thyroid. She was barely home when she realised something was wrong. Her legs felt like lead and her hands cramped up and she was soon back in the hospital having a calcium injection.
I feel confident with my doctors. However, I do think you are left to cope on your own too much and in between appointments you have to manage things yourself, which is difficult as there is no home testing kit for calcium levels.
‘It was a horrific moment because my body went into tetany just as they started administering the calcium. I thought they were causing it so I wanted them to stop. My husband was in the room at the time, so he was trying to keep me calm. After the calcium shot I was put on an intravenous calcium drip. The staff were really good and all recognised the symptoms but none of them had ever seen it happen. They told me with all their combined years of experience none of them had seen a case like it! I was given no information about the condition until I got home and Googled for information.’
Clare now has permanent hypoparathyroidism. She continues: ‘I feel confident with my doctors. However, I do think you are left to cope on your own too much and in between appointments you have to manage things yourself, which is difficult as there is no home testing kit for calcium levels.’
Claire has also sought other help. ‘I went to see a therapist to talk through the events, which helped as I think I was heading for a massive crash. I’ve seen a hypnotherapist to help rebuild my confidence with daily life. I have taken a meditation class to help remain calm when things go a bit array. I also went to see a nutritionist to help take control of things through my diet. I rely heavily on my husband to help me get through the tough times or just to get through the working week.
‘Life is a struggle, especially as people remember you how you were and do not want to see or comprehend how you are now. It’s a constant battle to get anyone to realise that you can’t do as much as you used to as you constantly worry about how this will affect you in a few days time.’