Wednesday, 25 September 2013

RIP blue man

I just saw this terribly sad story and was reminded of an alternative doc I saw in the nineties who wanted me to take colloidal silver. I'm so glad I didn't.

Click here for Daily Mail article  and the full story.

So sorry for this poor blue man who is now dead.

Paul Karason, RIP.

Monday, 9 September 2013

Home again and reflecting on another Information Event

What an interesting event.

left-right: Emma Thomas, Lorraine Williams, Mr Fausto Palazzo (and in background slide, Alaska Blue, Emma's gorgeous and beloved rescue sled dog, who featured in her talk, as a great source of support and inspiration through her illness)
Thanks to all who came along and to all who helped out and to our speakers and to the Royal Free for hosting us and the great catering team who did our refreshments and to those who have sent lovely feedback afterwards.

One person texted me yesterday to say:
“thank you for working so hard to organise such an enthralling lecture.”  
 I love these meetings. So much work goes into them but it is so worth it.

We learn such a lot and it is so good to meet and chat to other thyroid patients.

Thyroid surgery is not actually particularly relevant for me to know about. As someone with an underactive thyroid, as opposed to thyroid cancer, Graves disease (overactive thyroid disease) or a very enlarged goitre growing down into my chest, I won’t ever need thyroid surgery, unless something highly unexpected happens sometime down the line.

But I still enjoyed learning about it from eminent Consultant Endocrine Surgeon, Fausto Palazzo. And I enjoyed hearing from patient, Emma Thomas, who had her surgery more than 20 years ago, when she was just 21, even though she actually had a bad experience with complications, her story was inspiring as she has learned so much about how to manage the condition surgery left her with, hypoparathyroidism. And many of her lessons were relevant to anyone with a chronic health condition who wants to take responsibility for being as well as they can be.

We had been planning to have a third speaker, Louise Davies was going to give a talk on how yoga can be beneficial for people with thyroid disease, but I was concerned our programme was over full and our speaker was concerned about timings as she had to be somewhere else straight after our meeting, so we agreed to rearrange her for a future date (tbc) and we had a short relaxation session instead. That was lovely too. We’ve done relaxation sessions at previous Patient Voices events but this was the first time we’ve done it at an info event and it really worked beautifully. More of this in future I think. 

We also shared photos of our summer activities – the London 10K, Jill Liddington’s walk from Yorkshire to London and the London Group summer walk from Broadstairs to Ramsgate.  Some of our group had also been to a follow up session with the researchers at Imperial who wanted to canvas the views of thyroid patients on changes to how data is being used in the NHS.I hadn’t realised how busy we’d been till I stopped to pull all the information together.

In a couple of weeks BTF has 30 walkers taking  part in the Carrot Walk in London (as well as more walkers at events in Birmingham and Glasgow) organised by the charity Fight for Sight. And next year there’s going to be a special meeting in Leeds for parents, carers and children with thyroid disease. So we promoted both of those upcoming events too.

We finished with another epic Q&A session.

I’ve a lot to write up. And donations to bank. People as ever were very generous.

And I’m quite knackered, it’s a 150 mile round trip for me to get back to London these days and it’s a tiring day as you can imagine. But it’s all good. I’ll post again soon with write ups of the talks and some of the Q&As. 

If you came to the meeting and would like to share any comments on here please do, I seem to be very low on comments on these days though I know lots of you are reading the blog, please don't be shy - all comments are warmly welcomed!