So it’s progressed. They are going to try another 3 months of a different chemo, and if she makes it through it, she will go for a t-cell transplant in Birmingham (think that’s what it’s called. They informed us that it’s going to be a long hard road over the next 3 months, and during that time, my mum has signed a DNR as they said if it came to it, it’s not in her best interest to bring her back. But if she makes it to the 3 months, they will remove the DNR for the transplant part.
Tbh I don’t know how to get my head around this. I feel lost.
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Oh @Amz, I am sorry that your mothers condition has progressed, but at least now you all have a plan in place.
I bet you do feel so in shock and lost.
Give yourself time to get your head round this, and I expect it will take time.
How does your mother feel about this plan?
Take lots of special care of yourself and we are all here to support you.
Does anyone else relate to the feelings @Amz is feeling, I certainly do.
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I might have got it wrong, think it’s CAR T therapy?
Haven’t heard from mum. Don’t think she’s in a right frame of mind to talk to us right now. So I’m just say wondering how she is.
How has everyone else cope with bad news like this? I can’t even think straight
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Gosh - that’s so so much to get your head around @Amz and you need to give your time to process it all. - it will take time.
Are you able to contact through text?
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Normally yes. She’s not messaging back right now though. Don’t think she wants to talk so I don’t want to push it X
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I do hope things get easier for you @Amz . As well as my own blood cancer, my sister has terminal lung cancer and I don’t generally talk about her treatment and progress with her unless she brings up the subject as I know she doesn’t want to dwell on it. It’s so difficult when you want to help and feel powerless.
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It’s interesting because you have perspectives from both sides @Franko, how you are treated as a patient by others and how to treat the patient by yourself and there are no manuals and we are all so individual. What do we want the other person to say and do and what do we say and do with others.
I have just been for my daily walk with a clear Leukaemia mask on and this dog jumped up twice on me. I always protect my hands, but I thought the difference is that if a dog scratches my skin then I end up in A&E (with all the weekend sports injuries) for ages.
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@Amz I am so sorry to hear what you’re going through, it sounds incredibly tough. Do you have much support around you? Is there any general information that might be helpful right now that we can offer you? If you want to talk things through with us please do feel free to call us on 0808 2080 888, we’re only a phone call away.
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Sorry to hear that @Franko that must be really tough for you 
Life is really so cruel.
@Alice_BloodCancerUK thank you. I will bare that in mind, I know it helps to talk it through. I do have amazing friends and family so I’m not alone, but it’s still tough on us all.
So the reason for the no contact from her is because she has had UTI which has caused her a lot of confusion, hallucinations etc, spoke to her today and she seems a little better, but said a for a few days she didn’t even know where she was. Hopefully the antibiotics seem to be doing the trick now though and she’s a lot more with it.
Her Macmillan nurse said the next few weeks/months will be hard and she could very well go down hill very quickly… but I have to keep hope that she will keep fighting and make it to have the CAR T therapy 
Just sucks that we cannot visit her in hospital because of covid
Thanks again for all of your support and kind words. Xx
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Hi @Amz. Such a hard situation to be in but I’m so so glad that you got to hear her voice and that she sounds a little better. I’m keeping everything crossed that perhaps visiting will start up again soon X
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Hi @Amz, I am glad that you have spoken to your mum today. In my experience of being prone to them in the past UTI’s can be really nasty and apart from the symptoms you describe make me feel so rough and yukky.
You have also spoken to her Macmillan nurse I see and it sounds as if she was honest with you and it must be so tough for you especially not being able to visit your mum in hospital.
Covid times muck everything u, don’t they but it is so important that your mum is as safe as she can be especially as her immune system is probably very compromised.
At least you have us to support you, keep posting and take lots of care.
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I am so glad to hear you’ve got such a good support network, that’s so important. Glad to hear your mum seems a little better today. I imagine it was hard and worrying for you having no contact with her. Take care @Amz
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She’s been given only a 5% chance of treatment working.
I’m a mess. Not sure how I’m going to get through this.
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Oh @Amz I am so very sorry to hear this. I can only imagine what you’re going through. Do you have support around you right now?
No pressure at all but if you want to talk things through or if there’s anything we can do to support you, please do give us a call on the support line. Or you can email support@bloodcancer.org.uk and we can set up a time to give you a call?
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Oh, @Amz I am not surprised that you are in a mess, just give yourself a little time to process everything.
How is your mum doing?
Don’t forget we are all here to support you whenever you need us and I know you have the support line details.
Take lots of care of yourself and please keep posting.
Oh @Amz, I’m so sorry that you have received that news and I wish I could just give you a hug. I can only imagine how hard it is for you all. Please give the support line a call if you need to. We are all here to listen. Please share whenever you need. Sending lots and lots of love X
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Thank you for all of your replies. They are very kind.
Mum is adamant that she wants to keep fighting even though the chances are low… We are so very proud of her strength.
1st lot of this next IV chemo done today, she says she feels ok after it so really hoping it stays that way. Please keep everything crossed for her, she really is our world 
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Hi @Amz, I am typing this with everything crossed, yes, you must be so very proud of your mum and her determination.
She sounds a very special person and must be you world.
Please take lots of care of yourself and keep posting as you are a very special daughter as well.
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I have everything possible crossed! Your mum sounds amazing and so lucky to have you to support her. Please take care of yourself as well. Is more important now more than ever X
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So apparently mum didn’t have her Chemo on Monday 
Apparently it was meds to get her ready for it. So they are giving her a chemo called ‘cisplatin’, and should be starting this tomorrow…
The last two days or so she’s sounded much brighter, so I’m worried the chemo is going to knock her back down and it’s all going to go wrong… My anxiety is just so high right now
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