JetBlack

  • Jet replied to the topic Shingles vaccination in the forum General 11 years, 4 months ago

    I've just spoken with my GP and apparently the vaccine for shingles is not yet widely available. Even if it was, it is a live vaccine, so it's too risky to give to transplantees. We would be much more likely to suffer the disease from the vaccine itself, than be immunised against it. Perfect irony, eh?!

  • Jet replied to the topic Shingles vaccination in the forum General 11 years, 4 months ago

    Hi Eve

    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]

  • Jet replied to the topic Myeloma blogs in the forum Newcomers 11 years, 4 months ago

    Hi Lorna

    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.

  • Gill

    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]

  • Jet started the topic Myeloma blogs. in the forum Newcomers 11 years, 4 months ago

    For any newcomers, I'm sure you will find the support and shared experiences on this site invaluable. You may also want to check out some blogs that myeloma patients have written/are writing. I've found it helpful, reassuring and often inspiring to hear of others' experiences…

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

  • Jet started the topic Shingles vaccination. in the forum General 11 years, 4 months ago

    I heard an article on Radio 4's You and Yours on 9 Nov, about the Dept of Health giving approval for a Singles vaccination on the NHS. (http://www.bbc.co.uk/programmes/b01nq3d7 Have a listen from around 32:25).

    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]

  • Jet replied to the topic Blue Badge in the forum General 11 years, 5 months ago

    Hi Pat

    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]

  • Maybe they don't talk about things that are that far in the future…?

    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…?

  • Maybe try this link: http://www.dailymail.co.uk/home/search.html?sel=site&searchPhrase=ImMucin

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

  • Yes, it's the one in Israel. If you can't click on the link, just Google Daily Mail Israel ImMucin. Worked for me.

    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]

  • Jet replied to the topic allogeneic SCT in the forum Treatment 12 years ago

    Hi Penny

    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]

  • Jet replied to the topic Travel insurance in the forum General 12 years, 1 month ago

    Yes, that's very helpful, Caz. Thanks!
    From my own research above, it seems they will do USA, but maybe not for every condition????
    Good to have a used recommendation… but also not expecting to have any reason to claim, to be honest. Just covering my back!
    Jet

  • Jet replied to the topic JET ARE YOU OK in the forum General 12 years, 1 month ago

    Yes, my blog can be found at jetblackliving.wordpress.com. You can subscribe, so you'll get an email each time I post an update. Thanks to everyone who's interested to read and comment on it.

    There are a few of us blogging:

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

  • Jet replied to the topic Travel insurance in the forum General 12 years, 1 month ago

    I tried Medici and failed at the first hurdle… The date of birth field only covers people 18-49! LOL!

  • Jet replied to the topic Travel insurance in the forum General 12 years, 1 month ago

    Bloomin Norah!

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

  • Jet replied to the topic Travel insurance in the forum General 12 years, 1 month ago

    I just went to the MIA site and can't get an online quote for Myeloma. You have to call them.

  • Jet replied to the topic Travel insurance in the forum General 12 years, 1 month ago

    I just checked World First and got a quote for one week including USA/Caribbean. This is the response I got:

    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]

  • Jet replied to the topic Travel insurance in the forum General 12 years, 1 month ago

    Thanks for these suggestions, folks! I'm going to try some of them, along with one that Wendy told me about, with whom she managed to get an annual policy including myeloma, but excluding USA and Caribbean for a very reasonable amount. I think it was under £100, but not sure. The company is World First and I think it was an online questionnaire…[Read more]

  • Jet replied to the topic JET ARE YOU OK in the forum General 12 years, 1 month ago

    Thanks Jo

    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]

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