I feel lost and scared

In October 2024 I started getting sick but living with chronic illnesses I was able to pass them off. November 13th everything changed when I went to the emergency room for a minor issue and was diagnosed with acute myeloid leukemia. After some back and forth with that hospital and a second hospital I ended up going home. I’m trying to stay home until the holidays to spend it with my kids because what if it’s my last one? My issue is that none of the doctors would even tell me what timeline I had. Does anyone know a general idea? I’ve had no chemo at all because of the issues I had. I know that I don’t feel well. I’m tired a lot , my stomach is upset a lot and recently I’ve become randomly extremely cold. Are these signs I’m coming to the end? I’m still looking for another hospital and really want to wait another two weeks so I can spend the holidays with my children but I’m so scared.

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Dear @Kaylamylee,
Welcome to our forum, although I am so sorry for the reasons you are here. I can only imagine the shock that you have had. Please be kind to yourself and take one day at a time, have you got plenty of support?
Can I ask how your medical team have left things? Have you got any follow up arranged or any monitoring for over the Christmas period?
Have you got a number you can ring if you feel more unwell? You should have access to a 24hour support line? You could ring through if you are feeling more poorly?
Our nursing team would be very happy to talk things through with you if you wanted to call us our number is 0808 2080 888.
Take good care,
Heidi J (Support Services Nurse)

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Hi @Kaylamylee Thanks so much for posting such an honest post, your natural anxiety really comes through.
@Heidi-J-BloodCancerUK has given you a great response.
I can remember when I was diagnosed 20 yrs ago of looking at he ‘what if’s’ etc. etc.
I came home and wrote my will and funeral music and thought I would never see my son get married, have grandchildren etc. Well 20 yrs on and he has never married or had children, as far as I know.
The very true saying, but so hard, is try and keep it in the day.
Nobody knows what tomorrow will bring in this world.
It is so natural to be scared, you have had a tremendous shock. the internet said I had a 5-10 yr life expectancy and I am still here.
This is your opportunity to write down your symptoms (yes, we are all very complex, individual beings), fears, questions and practicalities for your next appointment.
I was also diagnosed at this time of year and felt on a surreal bubble with the world celebrating around me.
I have found that there seems to be a lot of waiting around and not knowing.
You now have your Blood Cancer UK and forum families around you so you are never alone and I have found a lot of us share similar fears, thoughts and feelings. we will be about all through the holiday season.
Be ever so kind and look after yourself and please do keep posting.

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Hi @Kaylamylee

I’m so sorry to read about what you’re going through, and glad you reached out. It can feel especially difficult to receive any diagnosis at this time of year and it’s understandable you’re feeling so scared.

I just wanted to follow up Heidi’s message with our information about Acute myeloid leukaemia (AML) too. When you feel ready, you can read through this to understand more about your diagnosis and potential treatments: Acute myeloid leukaemia (AML) - what it is, symptoms, tests, treatment, prognosis and support. | Blood Cancer UK Acute myeloid leukaemia (AML) can develop very quickly and often needs urgent treatment, which is why it’s so important to discuss your options with the hospital team as soon as possible. Your doctor can tell you what the aim of your treatment is - everyone’s situation is different, but as our information states:

  • For many people, the aim is to get rid of the leukaemia completely. This requires strong treatment and takes some time, but for many people the treatment is successful and they are cured.

  • For other people, the treatment doesn’t manage to completely get rid of the leukaemia. The aim of treatment might then become to control the Acute myeloid leukaemia (AML) and your symptoms for as long as possible.

Did they discuss treatment start date with you or what it would look like with the other issues you have? You mention you are looking for another hospital, so I’m wondering if it’s a bit uncertain for you?

As Heidi says, you are welcome to call us if you are based in the UK. It can be expensive to ring from abroad, but there are other organisations that can offer support and information elsewhere, such as the Leukemia and Lymphoma Society in the US: Information Specialists | Leukemia and Lymphoma Society. If it would be helpful to know more about these, you can also email us confidentially at support@bloodcancer.org.uk

Take good care of yourself,

Kind regards,
Ali

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Hi. Welcome to the forum so sorry that you have had this news and from what you say very little information about what to expect. I’ve got Chronic lymphocytic leukaemia (CLL) and have just retired after 46 years of nursing due to fatigue As a former manager in the NHS I feel it is unacceptable that you have so little information about What to expect ie prognosis , treatment plan and next steps which will worsen your anxiety. Maybe contact your haematology department and ask to speak to the specialist nurse for that team or contact your consultants medical secretary to ask for another appointment? Best of luck xx

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