Mum was diagnosed with Acute Myeloid Leukaemia 2 months ago, she had a week of chemotherapy then another bone marrow biopsy we were then told the treatment hadn’t worked and there was no more they could do, mum was very poorly at the stage and the consultants told us she had weeks to live. That was 3 weeks ago my mum is doing so well now she is eating and more like herself which is great. My worry is we were told when “it” happens it will be very quick, I am currently staying with my parents to help look after her, my family are 3 hrs away and it’s getting more and more difficult to be here. I know no one can tell me what to do I am just looking for some advice. This is tearing me apart.
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I am so glad that you have found us @Gigglerm and it must be heartbreaking to be in your situation and also torn between being with your mum and your family.
I wonder if your mum’s GP (or consultant) can be of any assistance perhaps with Macmillan nurses or hospice services locally to help you with your caring roll.
You must be physically and mentally exhausted.
The main thing is that you look after yourself as well as you are looking after your mum.
The Blood Cancer support line is there for you if you would like to talk to someone and we are here for you as a space where you can honestly say how it is to be you.
Be kind to yourselves and do lovely things together, and please keep posting
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Hello @Gigglerm
I am so very sorry to hear what your Mum and your family are going through. Being away from home must be so distressing for you as well whilst being a constant support for your parents.
May I ask whether your Mum is still have clinic appointments with her Haematology team or having visiting from the Palliative Care services? It is important to communicate with the Haematology team, via the Clinical Nurse Specialist if possible, that your Mum is improving but that you all need more support. As long as your Mum is able to consent to you calling the team I think that is a reasonable start. The expectation when a person is sent home with no further treatment is that they have a contact within the palliative care service locally so that their condition and their family can be supported: What end of life care involves - NHS. If this is not something you have been given then again I would call the Heamatology team or your Mum’s GP.
With blood cancers like Acute Myeloid Leukaemia the progression can vary and it is important that the right care is given. There may be supportive care that could improve your Mum’s well-being so always best to ask: Blood cancer treatment aims | Blood Cancer UK
I do hope this helps and please do call us if you would prefer to talk things through: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma
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Thank you Erica and Gemma.
We have palliative care through the GP which is Sue Ryder, we’ve been home for 3 weeks and seen a Sue Ryder nurse twice, she has helped us with attendance allowance application and given us a couple of leaflets. Other than that we have been left alone, we have seen a district nurse too as mum has a sore area on her tummy due to blood thinner injections she had whilst in hospital.
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Hi there, no words of wisdom or great points of info from me but just a few words to say im sending every good wish, strength, calm and moments of joy and laughter. I do know all of these can exist at this extraordinarily pressured and sad time. I hope your own circumstances allow you to stay with your parents for this time - its clear you want to be there. I hope you can take each day as it comes, i hope you know what a privilege it is to spend time with someone as this chapter plays out and i hope you know you are not alone. Be as present in these moments as you can, take moments away as you need and know you can do this. Someone i loved and lost in 2020 always told me “we can do hard things”. And we are so amazing and really can. From me to you with kindness at this time
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Thank you so much, I appreciate your words. We are making the most of our time, laughing and crying together. I am really lucky to get this time with my mum, so many don’t get that.
Take care x
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Hi @Gigglerm,
I hope you’re doing okay today? As Gemma has previously mentioned, should you wish to talk things through, our support line is very much here for you Blood cancer information and support by phone and email | Blood Cancer UK.
Do Take Care, Lauran
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Hi @Gigglerm
I’m so sorry what you are going through. All I can say to you is I’m so glad you are getting the opportunity to make memories as hard as it must be. Nobody can tell how theses things go & just take one day at a time & laugh & cry as much as you want to with your dear mum. Sending you love & support. 
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Really tough day yesterday, mum was beside herself crying and just letting it all out, it was tough to see, she has been so strong.
I do feel that we are getting very little support, the district nurses have been amazing however we have a palliative care nurse and we have been home 3 and half weeks and have seen her 3 times is this normal?
We want the best for our mum but she is quick to dismiss help (purely because she feels there are others worse off than her).
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Have you called the palliative team? If not then call them & explain to them you feel you are not getting the support needed & that you are struggling. Your dear mum sounds much like how my mum was not wanting to cause any fuss or burden but it’s so important that you all get the help that’s needed. Have a word with your district nurses to & see what they think. I’m sorry I don’t have all the answers for you but please rest assured you most certainly have my support when needed.
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Hi @Gigglerm,
I am so sorry to hear that your mum has been through a really tough day. That must be so difficult for both you & your family to witness & manage. May i ask how you all are today?
Your feelings of lack of support are fully warranted as your mum and her care is all that should matter. It often feels like the only aspect we can help control in such a powerless situation.
It is also really important that you all are feeling supported and that you have plans in place should mum need an increase. Contacting the palliative care community team would be a great start and it may be they can spend some time and talk through both their service but possibly signpost to others also.
Would it be helpful to have a chat about things with ourselves? If so i would be more than happy to arrange a call in the next few days. Please do just let me know if this is something you would like.
Take care of yourself, Lauran
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Oh @Gigglerm what a tough time for you all.
It must have been so heart wrenching to see your mum beside herself crying, but probably just what she needed, in my experience I can only hold things in for so long.
I can imagine your mum being very quick to dismiss help, she has probably heard stories of resources and services being stretched and she is so lovely she feels that there are others worse off than her because she has such a wonderful family around her.
However please do speak to each agency and understand what they can provide and stress your needs as a family. My phase is to be ‘pleasantly assertive’.
I can hear how emotionally, physically and practically drained you are.
The Blood Cancer UK support line are there for you to have a chat with.
Please try to look after yourselves as well as you are looking after your mum.
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Hi @Gigglerm I have been thinking of you both loads.
How are you both doing now?
Be kind to yourselves
Thank you for checking in.
Things are mentally draining, mum is doing ok, has aches and pains but doing really well. We are just so confused with what is going on, in the 5th week of no treatment and amazing that she is so well!
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Oh @Gigglerm things must be so mentally draining for you both and so, so confusing.
Perhaps just make the most of every day as it comes and really be kind to yourselves and do lovely things together.
Look after yourselves and don’t forget the Blood Cancer UK support line is there for you if you would like to talk to someone 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
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Hi @Gigglerm I can completely identify with your situation as I lost my brother to pancreatic cancer and we were given notice that he would die within a week or two. I took time off work to help with the end of life care but found it very stressful, getting up every day wondering if that was going to be the day. He started off those two weeks quite lively and eventually lasted three and a half weeks but the last few days he wasn’t able to eat or do anything for himself as his body was shutting down. They drastically increased his meds to knock him out so that he was less aware of what was going on towards the end. It was a horrible waiting game and I really feel for you. I do hope that you are looking after yourself as I don’t think I did. It goes without saying that we are all here if you need to talk. Let us know how you are.
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Franko, thank you for your reply and sharing your experience. I am so sorry for your loss.
Unfortunately I think it goes with the territory, the most important person is the one going through this awful disease, and you literally concentrate on them until the inevitable happens. Then it hits. I’m so glad I’ve got time with my mum but mentally it’s very draining.
Thank you 
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Hi @Gigglerm I have been thinking about you both, how are things?
You say the person going through the illness is the most important one, I would say the carers are the unsung heroes and equally important.
Look after, spoil and be kind to yourselves
Hi Erica, thank you for checking in. My mum is surprisingly well, we are thankful but extremely confused and mentally I’m exhausted. I’ve managed to come home for a while as mum is well, we are hoping to go back to the consult at the hospital in the next week or so to see if anything has changed.
This is an emotional roller coaster, I really want to get off now😢
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Oh @Gigglerm I bet you want to get off your emotional roller coaster, you must be mentally, physically and practically completely exhausted and your batteries depleted.
Now you have to catch up at home.
Please try to have a bit of a rest, be kind to yourself and take care of yourself.
Please keep posting when you can.