@Byrnebaby blood cancer do a Red card where you can fill in your information and you could carry that around with
Also pop it in the medical part of your phone
iPhone have
Make sure all your emergency contacts know all information about you if unable to communicate
Hi spangles
I had a bad experience with first two when they first came out and I didn’t make any antibodies I also had Covid after I had them and was treated with sotrovimab.
After my second transplant I wanted to protect it so I did a lot of research with my brother for many hours and conversations in 2022 and I made my decision to postpone for now.
To note I have a personal risk assessment plan and I’m shielding due to my own research
Everyone has to weigh up what they want to do.
My household keep away from me if they are feeling unwell
We did have Covid in the house after my transplant and we put into plan my risk assessment and I avoided catching it.
NB for information
There are very very limited trials that will take you on without covid vaccinations at this moment in time
Luckily the one I hope to to do it isn’t a strict protocol
Something to think about
Thank lovely @2DB ordered 2, 1 for phone, 2 for purse, great idea? X
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I’m similar to @2DB I reacted to the 1st Astra Zeneca jab, sort of like mumps, the nurse who did our injections died from it, and then reading lots on it, it get very confusing all the info/misinfo out there, I don’t think I’ve had it so far, I know I’m more at risk, but my lifestyle anyway, we don’t see the kids if any of us are ill, we never really go out in crowds as k and I are more early morning walkers and shoppers, I’ll carry on masking shopping until April anyway, we do everything early morning, and if I ever go to gigs again , they will be outdoors, or I’ll wear a mask, I just don’t know what’s right with all the conflicting advise, at the moment I feel doomed if I , doomed if I don’t, bread too much 
@Spangleystar I didn’t realise with trials it could be compulsory to have the covid @2db that’s interesting , I just hate the thought of any of them, hate this blinking disease 
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I had Astra zenica times two
First one it was thought I had an embolism had 2 ct scans in A&E sent by my GP
I did not feel well at all for several weeks.
the trial I hope to do is looking at.Biospecifics Car T from Astra Zeneca not covid vaccine required
Omg @2DB how frightening! I’ve just read a research paper on a woman who relapsed shortly after taking it, and they can’t definitively say wether the jab caused it or not after a 4 year remission 
it’s all so confusing isn’t it?
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Gosh some nasty reactions! I’ve had 8 I think now and not so much as a sore arm. I was advised to have it because of my heart condition, it’s all about weighing up your individual risk I guess xx
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To our little ray of light, we are all wishing you well tomorrow and thinking of you and sending you the hugest amount of love and hugs, got get ‘em @Spangleystar xxxxx 
xxxxx
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Oh thank you my darling @Byrnebaby I’ve been up since 3 I feel nervous, and I know I don’t need to. This is apparently a well tolerated treatment but I keep getting infusion flashbacks from Stem cell transplant and how I got jumpy frogs legs 
and wondering how I’ll cope with that for 6 hours 
. It’s not a known reaction- but then again it wasn’t before! It’s made my kids howl with laughter when I’ve demonstrated it, but joking aside it’s painful and frustrating so the thought is making me a little crazy!
Was sorry to read on the other thread that you’re back in the brain spiral. What do you think will pull you out of it lovely? Have you spoken to your GP to see if there’s anything they can help you with? Xx
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You have got this spangles
Coming so far already
The unknown is always the worst step
X
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Hope all went well for you xx @Spangleystar xxxxx
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Thank you, no frogs legs 
but it did have to stop twice for an hour to deal with reactions first a migraine, then hives on my face and my head overall was really itchy especially in my ears and throat. They got that down in about 40 minutes and I’m just home now. They keep going with Isa even with reactions until your body gets used to it, so hopefully next time won’t be as bad 
I am back to tired and wired after taking 20mg of Dex at midday followed by further steroids and multiple antihistamines. Urgh. Xx
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Oh bloody heck @Spangleystar you don’t half go through it sweetheart x that’s such a long day, glad you dint get the frogs 
but ohh no to the rest!! Hoping it will quicker and quicker as you go on and your body adapts to it xx go get a cuppa and a sit down x love you x
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Thanks my darling, ‘this too will pass’ is today’s mantra would like to sleep it off. Maybe I’ll try singing ‘C’mon Eileen’ instead of counting sheep tonight how are YOU feeling my angel? @Byrnebaby 
xx
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Should also say @Byrnebaby I’m back on the co-trim again! So aside from treatment day it’s three days co trim and daily acic. Early again today, just the 3 hours, even with a sleeping tablet - thanks Dex! Xx
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Hey beautiful people, I’ve just posted this in my group, as I’m trying to run a ‘Be Prepared’ section @Spangleystar @2DB @DuncanB @Erica @Willow @judesadventures @Jules @Ceri_BloodCancerUK @BloodCancerUK_Nurses_Group
IMPORTANT: Free Home Phone Protections for Myeloma Patients (UK Digital Landline Switchover)
Hi everyone,
If you use a BT landline, please read this.
Traditional UK landlines are currently being switched over to a new digital system. Crucial note: Digital landlines do not work during a power cut.
Because cancer treatments and long-term health conditions put us in the vulnerable needs category, BT provides free Battery Backup Units (BBU) to keep your landline working for emergency calls if the power goes out.
How to Protect Your Line
To get your free backup equipment, you must let BT know about your health status so they can flag you on their system.
- Call BT Customer Service: Dial 0330 1234 150 (or 150 from a BT line).
- State Your Health Needs: Tell them you are a multiple myeloma patient and rely on a working phone line.
- Ask for the Scheme: Request to be placed on their Priority Services Register(sometimes called the Protected Services Scheme) and ask for a free battery backup unit.
Who Else is Automatically Eligible?
- Anyone using a health pendant, fall detector, or personal alarm
- People aged 70 or older
- Anyone living in an area with no mobile phone coverage
If your landline provider is not BT (e.g., Virgin Media, Sky, TalkTalk), they are bound by the same safety rules. Please call them directly to register your health condition and ask for their specific emergency backup options.
Official Support Information: - Learn more on the BT Digital Voice Support Page
- Read about customer protections on the BT Connected Together Hub.
I spoke to them on their live chat at 9pm last night and my unit is in the post 
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3 hours!? Oh you poor thing , I hope you get a chance to catch-up and relax today xx I’ve not stopped any of my induction meds, been on Aciclovir, Fluconazole and ataquvone ( alt to co-trim) right the way through, during Stem cell transplant and still on them all now, so odd the regional differences x
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Thanks @Byrnebaby for this vitally important information, you are a star too.
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Thanks bb that is very useful info
Can I add if any of you haven’t already get yourselves on the priority list for gas/electric/water it’s easy to do on their websites
How are you feeling today spangles @Spangleystar
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