I need to let you know that Wendy died this morning at 2:45. I didn’t get to see her but I’ve been told she was peaceful.
I’m turning off notifications for this post, so I probably won’t get to read any comments left.
Much love to all of us
Thanks Pips. Sadly she died this morning at 2:45. I didn’t get to see her.
I’ll post for the whole group to see.
Don’t be too excited for more blog posts as that would mean that I’ve relapsed and/or back in treatment.
Many of you will have had contact here or even met Wendy Duffield.
I’m sorry to tell you that she is now in ITU at Manchester Royal Infirmary, following intensive treatment for AML which developed post-allo transplant.
Her blood counts are at zero, following the chemo, but now her vital organs are shutting down and she has a s…[Read more]
I've not read everyone's responses, but a few, including both of Dai's.
I had an awful time going through my auto SCT (almost two years ago). Having said that, I completely agree with Dai that even though it may be horrid to go through, it really isn't terrifying, just a bit miserable.
In my case, a relapse came very quickly – 5…[Read more]
Another blog update. Thanks for reading. Comments are most welcome, preferably on the blog itself: http://jetblackliving.wordpress.com/2013/05/04/from-above/
If anyone wants to know what I get up to now that I'm well on the recovery road… http://jetblackliving.wordpress.com/2013/04/23/out-of-adversity/.
Also, if anyone is going to the East Midlands Patient Info Day on Saturday, I'll be there giving a Patient Experience talk. Please come and say hello.
I never made it to one year after my auto transplant. I only got five months before relapsing.
But on 16 May, I will celebrate my one year anniversary for the donor transplant I had after secondary treatment.
Enjoy Australia! Enjoy everything!
I bet a few of you will recognise this… http://jetblackliving.wordpress.com/2013/03/28/minor-scare/.
Thank you for reading.
Thanks for your response. I'm not particularly daunted about speaking in front of an audience and I already know the venue. Im trying to decide between using slides or making it more informal. If I do use slides, I think I need to make it a bit funny – photos and so on, not just information. There'll be plenty of information on the…[Read more]
I wonder if anyone here will be attending the Patient Info Day in Nottingham on 27 April?
Also, has anyone else delivered a patient's perspective talk at any of these days?
I've been asked to speak and quite excited about it, but just wondering if anyone has any tips or things they think they'd like to hear from another…[Read more]
If anyone's interested, you're welcome to read my newest blog update: http://jetblackliving.wordpress.com/2013/03/06/overdue/
Your comments are welcome.
Thanks for reading.
I tried World First, but they've changed their underwriter since I last tried them and it was a real palaver and not so reasonable. But I did get a good quote, that included not just MM, but also depression, chronic kidney failure and Graft versus Host Disease, from Free Spirit: http://www.freespirittravelinsurance.com/
It's certainly worth…[Read more]
I've just posted another update on my blog: http://jetblackliving.wordpress.com/2013/01/12/keeping-my-eye-on-the-ball/. Thanks for reading and commenting.
I've just posted a new blog update, if anyone is interested to read.
I am on a mission to recruit more stem cell donors. You may want to read back to the previous update to see what I've been up to. It's all quite exciting!
Thanks for reading and comments…[Read more]
I was also in hospital with kidney failure, which led to my diagnosis (Feb 2011). Literally within a couple of hours of receiving the diagnosis, they put me on Dex. I didn't start the other medication (Revlimid and Cyclophosphamide) for a few days, when I chose to go on the Myeloma XI trial. When I queried why they started the Dex so…[Read more]
All the consultants and registrars at Nottingham work very closely together, so it doesn't matter much who you see, but you can express a preference. I generally aim not to see Prof. Russell as I find he can be quite dismissive and abrupt, whereas Jenny Byrne and Cathy Williams are much warmer and will gladly spend time answering…[Read more]
Although I barely knew Paul, his death has shocked me the most, for the same reasons you mention in your blog. Not wanting to steal your thunder, Wendy, but I've also just published a blog update on the subject of dying: http://jetblackliving.wordpress.com/2012/11/20/the-other-side-of-the-coin/. Thanks for reading. Comments are welcome.
I understand the confusion. In the first stages, everything's confusing as it's all so new.
Briefly, myeloma is either heavy chain or light chain. If they're talking Bence Jones and kappa/lambda values, then you have light chain. The treatment's the same, but the tests to check on response and progression of the disease are slightly…[Read more]