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
Jet

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.

Best wishes
Jet

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]

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!
Jet

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]

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]

Your comments are welcome.
Thanks for reading.

Jet

It's certainly worth…[Read more]

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!

Happy Chanukah! Giving a gift of life…

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]

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]

I'm not off radar, I just don't come to this site very often, but I do blog fairly regularly, so if you want to know how I'm doing, you're welcome to read it: jetblackliving.wordpress.com.

And yes, you're right, after both types of SCT, you need to renew childhood vaccinations. But your haematologist and GP should advise you.

I…[Read more]

Thanks for adding Emma's blog to the list. I've checked it out and made contact with her. It's very well written, don't you think? How amazing and how awful to have myeloma so very young. 49 was way too young for me and I guess for Mike too in his mid-fifties.

My heart goes out to you. Grief is so painful. My neighbour's husband died in March this year and we both look out for each other and ask how it's going – grief and managing alone versus cancer and its treatment – fortunately we both feel able to say how it is, good days and bad days. She has experienced the same as you though, with people…[Read more]

There is a website that lists blogs by, about and for people who…[Read more]

I was just wondering if anyone else knows about this or have you tried to get it? As I have had an auto and a donor transplant, my…[Read more]

When I got my blue badge, it was from the local council, not from DVLA. It was very straightforward as I recall.
I don't think this is the way I did it, but I've just found the direct.gov website for applying: https://www.gov.uk/apply-blue-badge

Good luck! It has made such a difference for me, being able to park near places and often…[Read more]

I don't know as I only went to the morning of our local Info Day last year. I got bored and it was a sunny day so we left. Bad form! LOL!

It sounds quite exciting, but probably not for us, but those who come after…?

If it doesn't work, just search the Daily Mail page for ImMucin.

I'm quite well at the moment. Tomorrow's my last day of Velcade. Bit wobbley from the Dex, but energised, so it's ok. Just finding trouble typing straight and I have college assignments to complete. Ah well, it'll all get done. Off…[Read more]

I am also about to face a donor stem cell transplant – providing they can find a match. Any prior experience, particularly about recovery and GvHD would be appreciated. Do you have a possible date for yours? Mine will probably be around May this year.

At Nottingham they have a list of 9 patients who've been through it from a similar…[Read more]

There are a few of us blogging:

Debs: debsjourneywithmyeloma.wordpress.com
Wendy: wendyduffield.wordpress.com
Sean:…[Read more]

I just tried All Clear Travel and got a quote for £1499 for the same conditions for a week in USA!!!

The total premium for your policy, including the accepted medical conditions, is: £102.28

We have shown below the status of the declared condition(s) for each traveller and how much extra to cover any accepted condition(s) is…[Read more]

It's nice to know people are thinking of me. I don't come on here often, so best place to find out how I am is on the blog. You're welcome to leave a comment on there too.

As you can see, my remission has failed and I am now on Velcade, in preparation for an allo transplant later this year. Not really ready to fully face that yet,…[Read more]

How are you getting on? Am I right in recalling that you had your SCT a month or so before I had mine? Or am I mixing you up with someone else? Sorry, I've been a bit out of touch.

Hope you're doing well.
Jet

I have just started on Velcade cycle 1, as my remission following the SCT failed very quickly. Velcade is currently being administered by injection, but at Nottingham they are well on their way to being able to administer it subcutaneously. I'm hoping 2nd or 3rd cycle.

I was warned by the specialist nurses that the worst bit would be…[Read more]

I don't consider being lesbian a sexual preference, it's more complex than just a preference and I think that's true for most lesbians and gay men. But this is not the place to go into sexual politics. Suffice to say, that I would not need to explain this to someone who…[Read more]

If there are any issues you want to raise, you can leave a message here for open…[Read more]

Yes, Revlimid is in capsule form. The trial protocol is for 25mg per day, but my consultant was keen to give a lower dose, as the lower dose has been found to be effective in previous trials at the maintenance stage. So, due to my decreased kidney function, she was able to prescribe 10mg per day, with the option to reduce it to 15mg…[Read more]

In answer to your question about how long it takes to get over the SCT… think of a piece of string. As you must know by now, and as we ALL have learnt, everyone is SO different. It would seem that the younger and fitter you are prior to the SCT, the easier it goes, but it so depends how you respond to the chemo, as those symptoms…[Read more]

I had my laptop in hospital with me and could write my blog, access emails and Facebook via the hospital's wifi system. There was no issue about germs at all. In fact, the specialist nurse was the one who mentioned I could take the laptop in with me. The only thing your mum would need to check is whether there is internet access.

To…[Read more]

Glad to hear you're doing well. Sorry to hear about the itching. These things DO matter… quality of life is important. But hopefully, you can get something to manage it? Do ask… A Canadian woman with leukaemia wasn't told by her doctors about easy-to-access (from a pharmacy) products to help with dry mouth and dry eyes from GVHD,…[Read more]