So update on my mum. Shes been told today that the chemo isn’t working and they are stopping it. They are just going to give her blood transfusions as she needs them and they will support her all the way. Not sure what all this means
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@Wendle, you must feel so anxious and concerned.
Have you got a medical contact details like a Clinical Nurse Specialist, Consultant, GP, your mums nurse that you mentioned before, Macmillan Nurse, etc. that you might be able to ask direct questions with. I find not understanding what is said just plays with my head and emotions.
We are here for you, you are not alone and if you would like to talk you can contact the Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at support@bloodcancer.org.uk.
I expect your mum is having the same fears, thoughts and feelings as you so if you are able to talk together perhaps it might help you both.
Treat yourselves
Please let us know how you get on.
Yes I’m phoning my mums nurse on Monday to find out whats going on. Mum had a few units of blood today and the consultant spoke to her in clinic while she was having bloods.
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My thinking if her chemo has stopped and she’ll just have bloods when she needs it, what will the cancer cells do ? Will they grow and spread and at what rate will this happen. I’ve so many questions to ask
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Hi @Wendle don’t you worry how many questions you have to ask, this is your opportunity, perhaps add your fears as well as those questions and follow up questions.
Take care and thinking of you both and please let us know how you get on.
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Hi @Wendle I can’t help with the medical stuff but as Erica says your medical team will be able to help with any questions that you have and we are all here to talk to when you need to.
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My mum these past few weeks has slowly got worse. Having been admitted to hospital
Last week with a high tempreature, no infection was detected and she was discharged from hospital after a week and allowed home. The conclusion was it was her AML that was causing the temprearure.
She came home in a very bad way, weak ,tiredand very breathless. She slept most of the weekend. She had her weekly blood test on Tuesday and it showed bloods at 71. She was booked for 2 units of blood today. But unfortunately she collapsed at home and was blue lighted into hospital. Her tempreature was at 40.5, blood pressure 105/ 45 and blood count at 60. Shes very poorly and on oxygen at the moment. Dr has called me in fir a meeting at 10.30 tomorrow. I’m upset and so very worried about my mum. I have no idea what the dr is going to say. I feel so helpless 
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Oh @Wendle, It must be dreadful to see your mum deteriorating and there is nothing you can do to make her better, you must feel so helpless.
Have you got any support?
Is there anyone, Covid rules permitting, you can have with you at the appointment tomorrow?
if you feel up to it then it might be an idea to write down all your fears, thoughts, questions and practicalities so that you ensure you ask everything you want to at your appointment tomorrow.
We are here for you and if you would like to talk to someone the Blood Cancer UK support line is above.
Please let us know how you and your mum are and the appointment goes tomorrow, I will be thinking about you. Look after yourself…
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I have my sister & 2 brothers with me tomorrow. Our world is crumbling down around us. Mum has gradually got worse over these past few months, but has declined fast this past month 
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Had the hardest meeting. We was told all treatment was being withdrawn, and mum has only days left. Mum was fast tracked home that day.
That was 5 days ago and my beautiful brave mum is fighting on. Its been a very rough and emotional 5 days. She’s developed a large fluid type blister on her left arm and we were told the aml had gone into her skin. We are a close family unit, and we are all caring for our mum at home. Mum has daily visits from the community district nurse’s & palliative team.
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Gosh @Wendle I am truly sorry to hear of what you and your family are going through. I can only imagine how devastating this must be. Please know we are here for you on here and also on the support line, if you want to give us a call at any point to talk things through. Is there any general information, that might be helpful, at this stage? We are thinking of you and your family.
Alice
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Oh @Wendle, I don’t know what to say you must feel so powerless apart from just making sure you are there for whatever your mum needs. Your mum is obviously a fighter.
Perhaps a time to talk and make memories
I am so glad that you are a close knit family, it is at times like these that family are so important.
Your forum family and Blood Cancer UK support line are also here for you so please use us, as you say your emotions and thoughts must be all over the place and you must be exhausted. Take so much care of yourselves.
My mum lost her fight at 11.45pm yesterday, My heart is now broken into a thousand pieces.
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Oh, @Wendle I am so sorry to hear that your mum lost her fight last night, thanks so much for letting us know.
I bet your heart feels broken into a thousand pieces, that sounds so natural.
We are here for you and don’t forget the Blood Cancer UK support line if you would like to talk to someone.
Take time and really look after yourself, you must feel all over the place and emotionally, physically and practically drained. xxx
Oh @Wendle I am so very sorry for your loss. I can only imagine how hard things must be for you all right now. Do you have much help and support around you? If at any point you’d find it a source of support to talk things through, we are here for you on the support line.
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