How are things @Maz?
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Oh @2DB no, you could not make it up, I am so sorry.
I find other people’s diagnosis , especially if it is a blood cancer, really hit me hard.
We are always here for you both, you myeloma twinnies.
Look after yourselves and please keep posting how it is for you @2DB too when you have another hat on
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Hi, well consultant called yesterday, wrong blood test was done! No idea how it happened but apparently thru tested mum’s INR levels…not what we needed. So another wait for it to ge done properly…I go back to work next Tuesday, still don’t feel ready though as still dealing with trying to sort carers out . Thank you for asking xx
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Hi @Maz. That’s isn’t what you needed is it - you must be very frustrated.
Are you able to talk to your workplace and explain what’s happening so you can attend appointments and finalise the carers? X
Hi @Maz more awaiting the right tests to be done, it’s all waiting.
You are doing an absolutely brilliant job trying to sort carers out.
If you really do not feel ready to go back to work ask for another week off, they can only say yes or no.
Please keep posting when you get a chance and look after yourselves
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Oh I’m so sorry to hear that, @2DB - but she’s lucky to have such loving and knowledgeable support from you. That really makes a vast difference. Love to you both. X X
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Hi @2DB,
No you couldn’t make it up. It is good that you are close and can support each other on your respective journeys.
Best wishes
Helen
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Hi! Have been incredibly busy with trying to get bloods done and carers sorted. So the bloods came back, hemoglobin 60, platelets 60, so urgent transfusion tomorrow. Consultant not quite so why so anemic bu t I thought if bone marrow was failing and she has blood cancer surely that is a contributing factor? Still got bruises just appearing overnight. Had a cut to her leg which bled and bled, didn’t clot for 3days so district nurse has now badanged the whole of her lower leg, and it’s being redressed on Thursday. Still not got paraprotein levels back, last time they were 18, up form 14. Hopefully at hospital tomorrow I can get more information when having blood transfusion. I’ve had to report her carers to Adult Social care as they have left her again, alone in the kitchen and just walked out. I work for the NHS so I know how hard it is but what’s happening to Mum is utterly ridiculous. Hopefully September will be a better month as this one has been crap! X
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Thanks for the update @Maz and so sorry that you have had such a c*** month.
You must have been so busy and everything seems such a battle I suspect.
Obviously you are so worried about your mum, and she is so, so lucky to have you to care for her.
Perhaps write down everything you would like to raise and also get answers to tomorrow.
Please let us know how you get on.
Please try and care for yourself as well as you care for your mum.
You really are a star.
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Hi @Maz.
Thanks for giving us an update.
As @Erica has said - everything must feel like a battle.
I hope you get the information you need tomorrow. If you feel up to it, please let us know how you get on.
Take good care of yourself X
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Hi, so Mum had one unit of bloods…does anyone know if a further blood test is done to see if it’s been effective? Still not got rest of prev bloods back so no idea about the amount of paraprotein…so frustrating as the dept that did the transfusion only seemed to want to do the transfusion and didn’t really seem interested in finding out, despite me asking several times.
Also does anyone know if a sibling can be tested to see if they have monoclonal gammopathy of unknown significance (MGUS)? I asked my GP and they flatly refused 
Thoughts on this if anyone has any would be appreciated as consultant did indicate I could have the test done x
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Hi @Maz.
Thanks for the update, I can imagine you are both exhausted after today.
It must be very frustrating for you, not getting the answers you need.
I have copied in the @BloodCancerUK_Nurses who may be able to help with your question about testing.
Do you know when the other results may be back?
Please take care of yourself tonight X
Hi @Maz I have found that different clinicians do not like to comment or find out about tests or results ordered by another clinician too.
I believe GP’s have to follow strict protocols when ordering tests and I have heard this before.
Look after yourselves you must both be exhausted
Hi Nichola, well apparently they are back it’s just that the dept that did the transfusion couldn’t seem to access them, I’ll call up tomorrow and chase them
Thanks, I will x
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He Erica, oh ok thanks for letting me know xx
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Hello there @Maz
It is not standard practice to test the full blood count post transfusion, the assessment of effectiveness is based on the patients symptoms and whether they have felt benefit from the transfusion. I suspect that there will be a repeat blood test arranged to assess the need for any further transfusions. Please do speak to Mum’s treatment team about these arrangements and mention if there is any improvements in symptoms of anaemia.
If the Consultant indicated that a test would be appropriate I would ask them to write to the GP ask suggest this as it may well help in accessing the tests.
Hope this is helpful and do give us a call if you needed: Blood cancer information and support by phone and email | Blood Cancer UK
Take care
Gemma
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